Can Mom Be Calm?

Hello and Goodbye but Not Really

2011-12-05T10:31:00.001-04:00

As I see that folks are still continuing to drop by despite the last post in November 2011. I'd like to say, "Hey, drop on by the new site!"

www.toysaretools.com

I hope you'll love reading it at least half as much as I enjoy writing it. Thanks for dropping by Can Mom Be Calm?

-Jenn

p.s. I may be absorbing my old one into the new one so my followers can get my latest updates.

Final Post: Can Mom Be Calm?

2011-11-02T13:09:00.000-04:00

No one wants this kind of attention but thank goodness the media is here for us

I hate to be one of those people who leaves a blog hanging. But that is exactly what I've done. I know there is no great damage. I have no contracts, no stakeholders, no ads, and yet it pained me whenever I saw it or was asked about it.

I decided a few months ago to close Can Mom Be Calm? but I think I was just waiting for the right moment to close it and that time is now.

Sheesh, I was in the newspaper again. The last time I wrote about being in the newspaper, it was to defend myself about how I pay my teen babysitter after a wonderful New York Times article talked about the special needs babysitting program that my kids' babysitter had completed. But this time, the issue was very different. This time, I was in the paper because I was in the middle of a shame-on-you article where I shared the story of my eight-month-long battle to get safe school bus transportation for my preschooler receiving special education.

I hate stories like this. I hate that people have to go to the media to get things done. I used to be a publicist at a hospital and once in a while I would get a phone call from a very disgruntled patient who would literally threaten to go to the media unless we did X,Y, and Z. Dealing with such calls was never fun especially if you end up feeling like you are putting out a fire. It's stressful.

Now I was on the other side and I asked myself if my story was ablaze. Perhaps...it was one of those stories that made you shake your head. The problem was that because we lived in a different borough (county) from our school, the bus was allowed to take my then 3-year-old in a ride that could last up to 1 hour and 45 minutes long, even though the distance was only twenty minutes by car with my slow driving. There was a way out of suffering this busride and Spencer certainly did qualify for it. Certain medical conditions he had would make such a long ride horrible for his health. I got the right forms filled out and had it approved within a couple of weeks of him riding on this awful route. However, the approval meant nothing because I still wasn't able to get things changed for another two months. When they finally changed it, the change lasted only three weeks.

Sure, they gave me some sort of brief explanation but they wouldn't tell me when I would see change, not even an estimated date. I was worried because they would take Spencer in front of another school just a few blocks away and make him wait there until those kids came out before embarking on a long ride to go home. That wait could last anywhere from 15 to 30 minutes depending on who else from Spencer's school rode the bus before they stopped at the other school. Luckily, at the time, there were other kids from Spencer's school being dropped off and so during the colder months, I didn't think Spencer would be waiting too long in front of the school. It matters if it is cold or hot outside because when a school bus waits in front of a school, they must turn off the engine thereby turning off the heat or A/C.

But everything came crashing down in the Spring. The city stopped answering my phone calls asking when we would see a change. I would write emails to higher-up folks too and was astounded that no one replied. It was as if I was a ghost. I was virtually ignored.

I went to my local city council member, Jimmy Van Bramer for help and for months his constituent liaison, Deborah, would tell me where Spencer's bus issue was being discussed. First it would be discussed at a meeting with certain officials, then approved by another government body, then it was supposed to be finished, I was told. Without her, I was totally in the dark.

By late Spring, things really went downhill, the timeline of progress given to my councilmember's office suddenly came to a halt and there was no news of when things would be completed, by then it was a good seven months of waiting and it was like I woke up and wondered, how I could let this go on for so long. I did what I was told. I tried to be patient. I didn't scream at anyone. But look, I was still nowhere. I hated myself.

To make matters worse, Spencer was now the only boy from his school to be picked up on that bus and so there was no more of him sitting in a moving bus, now it would just be him sitting in a parked bus for at least 30 minutes. At this time, it must be mentioned that New York City humidity is pretty disgusting. And yet, buses have to turn off their engine in front of schools for more than 3 minutes. So what about the A/C on my child's bus? What about Spencer? Would the driver really risk a $2,000 fine? Would Spencer then bake in a bus?

Of course not, because I decided to take him home myself shortly after learning that Spencer would be sitting there like that. Even on the days when it wasn't so hot, I felt just awful about my little guy just sitting there. I bought him a Leapster Explorer to play with but oftentimes he refused to play with it because he is rigid about what he can do on a bus. I literally asked the bus matron to stop asking him if he wanted it and just told her to leave it on his lap and walk away.

I was furious for having to transport my son like this. Not only did I lose a lot of my own time and gas money, but I think it is just wrong that a parent would have to pick up a child repeatedly to keep him safe from an unsafe bus ride. The city would never tell me when it would be corrected. They wouldn't even tell me why I had to wait so long. I had no idea when this would end, if at all. Maybe they were hoping that I would just disappear if they ignored me for a while or maybe they were working hard on it but just didn't feel like telling me. I will never know.

What would I have done if I had a 9-5 job? Even if I didn't have one, I didn't give up my career to spend my energy on this! And say I was a mom who had a job like my mother did back then when she was a factory seamstress working for bare minimum wages. She would have been fired on the spot for leaving. It's just not fair and yet, when I say that, I feel like I sound like many kids with ADHD or ASD stomping their feet on the floor because they can't be "reasonable" or "realistic." But really, when are we supposed to stop fighting and start being "flexible"? How do we teach our kids when we should fight and when we should let things go? I have trouble with this myself still.

I don't know about you but I really suck at confrontation. To make matters worse, writing emails where I delineate infractions and point out fallacies takes hours for me. I write it, edit it, and reread it and then reread it again because I am the Queen of Careless Errors. Oh, and also, you can't do this kind of writing when your kids are home. If you did, that is one more thing that this ordeal has taken away from you. And heaven forbid if I picked up the phone and had yet another futile conversation with a complaint-taker. After hanging up, even if it was only a ten minute call, I would sink into a funk because it's all so depressing.

"Fight, fight, fight," everyone says. Did anyone ever tell these people who wield so much power over our lives that I need all of my patience and energy to give to my children with special needs? Could I be allowed to provide that kind of mothering instead of the exhausted, crabby, angry mothering I gave by the time they were home from school? After all this "fighting," I truly felt like my family had been robbed. While my love for them is endless, my daily supply of patience and energy is not. I am human, and my mind and body require consistent rest and refueling and if the bureaucrats take that away from me because I have to "fight" then what do I have left for my kids?

This is what angers me the most about this whole thing. Don't they (anyone who has power over us) want us to be good parents to our kids? Don't they want us to be true partners? Don't they think that if we can provide therapeutic and learning opportunities at home as much as possible then perhaps just maybe.... just MAYBE??..... our children would be less expensive to educate? But I have to ask them, how can they expect this from me when they have eaten all the meat off my bones and I am but a skeleton by 3 PM.

At one point, I really really did start to actually fear that Spencer's route would never be changed and that I would have to go get him everyday in the summer and possibly the entire school year to come. I contemplated getting a lawyer but wasn't that just crazy? Getting a lawyer because your child is not getting FAPE (free and appropriate education) is one thing but getting a lawyer so that your child won't bake on a bus? Then I would need to look outside my window and make sure I'm still living in America.

But really, I would literally write emails to the top folks in charge of school transportation in the city and say things like, 'tomorrow, the real feel temperature is 95 degrees. If you don't have a bus for him yet, can you do something in the meantime? How is it okay for him to sit in front of another school for 30 minutes with no A/C because the bus has to be shut off?' The rules also say that the bus staff can't even give him a sip of water! (I guess it's because of choking.) And let's not forget, we can't have sick bus staff taking our kids home. If my kid is baking on a bus, then somebody is supposed to be there baking with him. When the kids from the other school finally get on the bus and bus gets going, how can we expect that the bus staff will be in decent health?

Luckily for me, the bus matron and driver were the kind of people who would rather risk losing their jobs by giving a kid some water than to have a child under their care end up in the emergency room. Still, they would have to break the law and other rules to keep him safe.

So, I did what I really really really didn't want to do. I was very scared to do it because if people could be so neglectful and/or incompetent, how did I know I wasn't creating more problems for my other child who is also "in the system"? But I had to go to the media. I didn't want to hire an attorney not just because of the money but also because of the wait. Going to the press was faster and I had no more time to waste. Summer in New York City is just plain brutal. All subways and buses are air-conditioned. Why can't our kids have this too?

My councilmember, who was never mentioned in the story, was the one who pitched it. I was actually very worried because I wasn't quite sure how much of a story it would be. Would any reporter pick it up? Spencer was never in the emergency room. I never let him boil on the bus. Could we really get any coverage?

There was one newspaper who cared enough about him to put him on page 3. The article also had a huge picture of me and Spencer sitting in front of a yellow school bus. But you know, it did deserve to be on Page 3 because part of the story included how we got a new bus route within 24 hours of the reporter calling them to ask questions about Spencer. I had been trying to solve this with a pattern of complaining and waiting and then more firm complaining and then going to a local official. My council member had been trying to push this along with cooperative advocacy but clearly no one is rewarded for working this way.

You would think that I'd be happy with the results and I am but I am also very sad too. I don't think it is right that a parent has to go this far. The Daily News was kind in not disclosing my son's school name and his last name but again, this is luck. Because from my own experience of having to pitch personal stories from a hospital, I can assure you that not every editor will allow a story to go out like that. Like I say all the time, when it comes to my kids, they are not so lucky to have these challenges but in the course of raising them, we have been graced by the presence of some very fine human beings who exemplify the characteristics that I want my children to embrace.

While Spencer is too immature to understand it, I learned through this experience that in the face of adversity, I now have to explain to Logan what is happening and use this teachable moment. I need to teach him how "this is what I mean about speaking up for yourself." At first I didn't explain why I kept coming to get the both of them from school. He even asked me and I made up some lie. But that was a big mistake because I once ended up complaining to the city on the phone and he was unavoidably with me (in the car) hearing the whole thing. He got so upset that he actually ended up vomiting several minutes later. But then I sat him down and explained to him what people do when when they are wronged. I explained that I chose to get help from a newspaper to keep his little brother safe. It also gave me the chance to explain one of the roles of a newspaper in a community. Afterwards he thanked me for telling him the story and then said, "So that is why you've been picking us up everyday."

This was definitely a lesson in advocacy for Logan but also a lesson in bullying. Yes, bullying. Because there is no doubt in my mind that I was a victim of bullying- the grown-up bureaucratic version of bullying. I really do. Bullies do things to you because they think they can. And though we teach our kids to stand up for themselves. Sometimes that's not enough and that is why bullying continues. When you alone can't stop a bully, you have to ask your friends for help. We made a lot of friends throughout this process. All of them said the same thing to this bully and that is, "I see you, I know what you are doing, you'd better stop and I'll be watching you to make sure that you do. "

So is this the last post to Can Mom Be Calm? I thought I would end this blog with this story because it had everything to do with calm. Have I found it? Can I close it because I have it now? Well, not exactly but I seek calm less now. I am less afraid to not have it. I am less embarrassed when I don't.

I was not calm about this bus thing. I sometimes tried to have calm by being complacent and avoiding confrontation. I told myself I was being patient. That usually got me nowhere and that was not true calm. Cowardice never brings calm.

But after a while, I wasn't calm and decided to let myself get angry about the bus. I started to stop being sorry that I was in everyone's face all the time. I kept talking even when I saw that people were not happy to hear what I was saying. Sure they don't want to deal with it. No one does. This decision to let myself get really bothered by it was a release. It actually worked to fill my reserves with energy (and calm) so that I could argue for better opportunities for my kids.

When I am in some sort of battle about something, I try to explain to my husband that sometimes, this is how it has to be. It can't be easy all the time and if someone is kicking you around..... then NOT being complacent will eventually bring the peace and calm that we want. There are times when fighting (a.k.a. "advocacy") will take over your life because it is the birthing process of something better to come. I wish I could be very calm throughout this process but I am just not that evolved. I settled for so-so calm instead.

My husband and others said that it was taking over my life and I said, "You bet it is but I can not end this until I put out this fire completely." I couldn't let this go on for another year! It would have surely killed me. Everyone expected me to be the cheery "yes" person and this time, I just was not. I was angry. I snapped at everyone, especially my family. Once my brother phoned me but then could not listen to me complain about the bus anymore and he sort of hung up on me the most polite way he could. I called him back and let him have it.

Sorry if my life is not all roses for you. Sorry if I don't say "Fine" when you ask me how I am. Sorry if I just sound like I'm complaining all the time these days. To the people closest to me, I shouldn't have to always lie and try to make them feel comfortable. My life can get ugly sometimes and I can only hide it so much. I don't need them to be miserable with me but if they want to talk to me then they have to be willing to see my family for who we are and what we go through.

Thus, being calm while dealing with something like this would mean, at least for me, that I'm dead. Being angry when someone is treating you like shit is normal. And even if we have to train ourselves to be different, getting upset when your kid is doing something really unbelievable is at least initially a NORMAL reaction! Losing it, throwing and even breaking shit once in a while has to be normal too, right? It has to be. How can it not? I know we do our best parenting and advocacy when we are calm but sometimes, attaining calm is a process and we have to start the process sometime, even if it is rocky in the beginning.

I feel like I've changed a little. Recently, at a family gathering, I saw my family and some in-laws. It was a big party and these always makes me nervous even though I know it is good for my kids to go to these things. I tried my best to be calm while trying to help my kids take advantage of this socially challenging opportunity. Even though being with family is stressful, there is love there and my kids know it.

The evening started out awful. One of my children was running around in circles. The other one wouldn't eat his dinner unless he was sitting on my lap and spoonfed. I just wanted to get dinner over with so we could get the kids moving about but barely anyone helped me. Instead what I got was criticism.

"Excuse me," I thought to myself, "but how many times did I tell you that my kids have issues? Why must you always think it is my fault?" But these words left the thought bubble and transformed into real words leaving my good Korean American girl's mouth and actively rebuking my elders. I thought to myself, why do I need to make everyone feel comfortable? I am not comfortable and they are making it worse. So for an elder relative who criticized me about spoon-feeding my child at his age. I gave her a very direct blank stare with very intentionally awkward response of no verbal response (you can not do this be Korean at the same time- something will catch on fire). She wouldn't have understood that my son was overwhelmed and needed extra help. I was too pissed to explain for the 100th time.

For my mother who chimed in with something about how Spencer eats too many sausages, I gave her the same blank stare at first but then gave her a verbal thrashing the next day of "Do I have to explain to you AGAIN how his oral muscles are weak? Didn't I tell you that he has a hard time chewing and swallowing meat?" I actually just flat out told her to stop blaming me for their faults. Deep down, if she's not accepting their differences, then she is likely blaming me for them. They all are. No need to be nice if this is happening, right? Sometimes you have to be very direct and even shout a little to be heard. Can you shout in a calm way? I suppose not but now that I've done it, I'm calmer, we all are. The air was cleared, at least until they stop believing me again.

How refreshing it is to not have to be nice all the time to people who are not nice to you. At the time of tension, you are not happy. This is true. During the whole bus thing, I yelled at my kids all the time. But I don't anymore (at least not everyday). We are happier and I have healed a lot over the summer and early fall. I know my kids and my husband have forgiven me for being unbelievably crabby during this debacle. Even after winning a big fight, you still end up scarred and you need time to heal your wounds. But it's better now and I think that we will live to fight and win another day.

So let's ask this now: Can Mom Be Calm?

My answer is: "sometimes" and "sometimes" is good enough for me to move on.

Next up:

THIS IS MY NEW SITE! -www.toysaretools.com

My friend once told me that shopping was her sport. (Love you Fern, I am your shopping disciple.) I think it is a natural progression for many parents with special needs kids. We shop for toys with hope that this could help them work on their much needed areas of development or bring them joy that will help them carry those endorphins throughout the day so they can be in a great mood to tackle the harder parts of their daily lives.

Shopping with certain skill sets in mind can help parents become more goal-oriented and savvy about their purchases. Additionally, this "sport" is very time-consuming and expensive. Searching, finding the details, reading comments, weighing the comments, comparing products, buying it, and then trying it out at home and being disappointed regardless of the work you put into it can be disheartening and cause small to medium-sized marital fights. It is my goal to eliminate those feelings and make every purchase something that will put a smile on everyone's face. Additionally, I will also post my family fix-its, that include gadgets and other ideas that is intended to help with behavior training and family functionality. Please come visit me!

There are other great things to read out on the blogosphere. Please check out some of my favorites, some of sites written by friends and some are run by people I've never met. Also, I should say that I have not received any payment in exchange for being mentioned here in my list which is arranged in no particular order.

http://www.myspecialneedsnetwork.com/ This is anonline community bringing special education teachers, therapists, and parents into one big room. They introduce lots of neat products here and give members a chance to win a few of them. Membership is easy and free and seems to be growing really fast. The blog posts are interesting and informative. This is a site to watch.

http://specialchildren.about.com/ Few things can be as comprehensive and as updated as this site. Terry Mauro is the roving reporter for special needs news and she also occasionally throws out a question and has people sharing info and voting for their favorite sites. Information junkies: this is your stop

http://amomsviewofadhd.com This blog is awesome. Penny Williams' blog is a roundtable of great minds dishing out how to survive and thrive with ADHD in their families.

http://www.veryspecialkids.com/ A very different site others listed here but much needed in my great city. Every city and every town should try to bring their resources to a central place. I get my best info from other parents but it takes so much time. That time could go to caring for kids and ourselves instead.

http://www.sengifted.org/ Wow! Do I learn a lot here. There have dozens of free articles about gifted children with special needs. I just love how they are out there advocating for twice-exceptional (2e) kids. ADHD and autism are disabilities with a disability, I like to say... but being twice-exceptional, ugh, it's an everyday battle that fools even the child's parents. If you have a special needs child who makes you check to see if he really is seven and not seventeen because he just said something that showed some seriously advanced thinking then you have to stop here. Here I learned how to protect and encourage my 2e baby.

http://www.hartleysboys.com/ Hartley Steiner is a very smart and hardworking mom whose personal mission is to educate everyone about SPD and a million other things because she does pretty much everything including having written a children's book about SPD.

http://www.thequadmanhattan.com/ Even if you don't live in Manhattan or NYC for that matter, you have to see what is going on here. Ask yourself if classes teaching stand-up comedy, magic, tinkering with electronics is therapeutic and the Quad will say,"absolutely." To me, this is a great social experiment to provide gifted kids with issues, things like engineering classes with solid support to help them be successful as they can be. The kids might end up blowing you away. My son took a martial arts class here and he usually gets thrown out of such classes in the general community. He takes a class here and ends up quite possibly the most athletic kid in the group. We knew he had "lots of energy" but who knew he was actually talented? The layers were peeled off here. Now he's learning magic which means that he's learning that you need to look at how others see you to make them believe your trick. This is a crucial social skill that many SN kids lack.

Thank you so much for stopping by here on my last day and for reading what is probably my longest post ever. It's been an honor.

Until we meet again at www.toysaretools.com,

Jenn

This post is dedicated to my mother, whom I have shamefully mentioned yelling at here. She taught me by example how to be resourceful and keep on working until I am satisfied. Luckily, she programmed the bar to be really high for me so I still keep ticking as I look for more ways to raise my kids to become the persons they want to be. This blog and the next one has been just another way of being a resourceful mother as she was and still is to me.

Seeing Socially Through Their Eyes First

2011-10-12T17:20:00.016-04:00

So this is not the last post. I am actually done with the last post. I am just not done with the next blog. Yes, there is a next blog. That announcement will come soon.

However, I needed to post this because I had an explosive learning experience at recent a YAI conference here in New York and for me the best way to keep this memory alive is by recording it and sharing it.

You may have heard me discuss this in previous posts but after having listened to the Michelle Garcia Winner in person, I can appreciate even more now why her curriculum, Social Thinking is being used all over the world.

I first heard about her after an auction win for a 2-day session for a sibling dyad (relationship/play therapy) at Emerge and See an NYC-based educational center for special needs children. One of the owners, Alison Berkley spent a lot of time on the phone with me trying to explain how she uses the principles taught by Michelle Garcia Winner in her approach to helping siblings play with each other.

"Michelle Who?" is all I thought and then moved on. I wasn't interested in the curriculum. I honestly didn't even know there were different social skills curricula out there. All I thought was, "Could you just make my kids play with each other without it erupting into a fight, three seconds after I walk away?"

Alison, who, by the way, was really good with my kids, tried in the kindest most patient way to push through my blockhead what Ms. Winner teaches. And while it is no fault of Alison's, I finished my conversation with her picturing Ms. Winner to be some woman in some room at some school that wrote a nice text book about how kids can make more friends.

I really do have to thank Emerge and See for planting Ms. Winner's name in my head because the next time I heard her name was a year later, at my son's beloved afterschool center, the Quad Manhattan. The Quad is a place for lots of different classes and activities but Michelle Garcia Winner's Social Thinking concepts are the basis for the staff relates to the kids there and social interaction in their classes. Social Thinking, I thought must be a good thing because it was there he learned martial arts for the first time. My oldest son is a boy who gets asked to leave martial arts classes but at the Quad, he ended the semester as one of the best in his class. Until then we didn't know how athletic he really was.

But back to Social Thinking: I was already curious by then but I was really hooked when I went to a workshop at the Quad where a speech language pathologist and Social Thinking provider, Rhea Hooper spoke about how kids have a hard time thinking about what the other person is thinking. Thus, they make mistakes and that leads to the child with special needs feeling badly about himself. From there, the feeling bad part that is, we work our way back up to help the child learn from his social mistake. Wait, what????? Sounds so negative.

I felt like I was just transported by a Star Trek phaser to Korea, where I was born. I jokingly say that this culture in which I was raised, is a special space on this planet where the fuel of shame propels so many engines there. And you know what? I do not mean this in a bad way. I really don't because it is so very real. My kids may not know what exactly they goofed up on but they certainly can sense that they are not the most liked in the room. Not surprisingly, after some of their social faux pas, the buttons are pressed, and the meltdown begins.

No less than 1 million times have I heard as a child and personally said to children, including my own, "How would you feel if someone did that to you?" And now I am thinking, wait, why do we ask such a question to a child who has a hard time considering other people's feelings to begin with... why use a teaching approach that forces them to use a skill they lack? It's like trying to teach a kid to write with his right hand when he's a born-lefty. Or teaching division to a kid who's bad at both math AND reading by making him do math word problems. Not smart, right? Enter: Social Thinking.... and I am now thinking to say to my son something like:

Hey, you did XYZ, and she now has weird thoughts about you. How do you feel?

bad.

And do you like feeling like this?

no.

Hmmm.... maybe when this situation comes up again, you could try to solve the problem a different way? Can we talk about that?

yeah....

And I'm sorry to all the wonderful folks at Social Thinking if I am not interpreting their curriculum incorrectly. But this was truly the hook for me. My oldest son thinks in patterns and with logical reasoning (most times at least) and for his little logical mind, this is a great way to look at social relationships, which as we know can be quite illogical.

Let's go back to my college years.... "He said, he would call...... but it's been two weeks and nothing, no messages even! Why?"

Logic Man would say, "Chances are, he died, or was in a car accident and his cell phone was crushed, or he lost your phone number and doesn't know any of your friends' numbers."

Illogical Man would say, "Come on, not everyone does what they say they'll do. If he didn't want to call you, would he tell you that and then go?"

Illogical Man wins.

Ms. Winner also talked about dating issues briefly too although the above example is just a sampling of my most pathetic dating memories. Anyway, I now think like this: social relationships are not so logical but we can speak to our concrete-thinkers by trying to see things through their perspective first. Ms. Winner did teach me that this week. I hope I never forget it especially since I forget a lot of stuff.

My son who is an expert forgetter too, is more apt to remember his own feelings more than someone else's. Heck, he may not get how someone else feels at all, especially if he has never been in the same situation. Sometimes we can't either. But I am quite certain that if I remind my son to remember his own feelings about certain situations, then he will be more motivated to make better decisions and carry out the "expected" behavior if he wants others to NOT think weird thoughts about him.

I mean it all sounds so practical, doesn't it? If you insult someone or get left out or have an argument, irregardless of how the other person feels, I tell my son, "you will feel bad and YOU don't want that." And I know he gets that.

I know this is a little bit against what I learned as a kid... Be yourself.... It doesn't matter what anyone else thinks about you.... Don't copy them just to fit in.... Just ignore him, he doesn't matter..... But you know what? I don't think these mottos apply to my kids. Maybe later, but not now, maybe not ever....

So instead of asking, "Do you remember how mad Daddy was when you broke that?" I am now trying to ask him, "Do you remember when you had to explain yourself to Daddy and how awful you felt?" And likewise, I can remind him how great he felt about himself when he won that prize and leave the focus off of how I was proud of him or how everyone was praising him. The key focus is always about how HE felt.

It goes much deeper than that and I should not try anymore to explain this curriculum. I have more reading to do and I am not good at reading. I promise though, that I will be posting more about Social Thinking in my next blog especially how social deficits are tied to academic problems--- totally fascinating. But since the new blog hasn't made its debut yet, I needed to write something about this very fantastic curriculum that has been changing the way I've been teaching my children to relate to others.

For my older son, while there are myriad interventions at play, Social Thinking is one strong reason why his playdate requests have gone up by, gosh... I can't compute.. how do you times something by zero? Okay, seriously, just 12 months ago, I would stare at my contact list and really have a hard time finding a good match for him but now things are different. It's hard to describe it without sounding AND feeling deluded so I will just say this: I am so proud of Logan. He has been doing great at making friends these days. If you ask him now,"Who is your best friend?" He will give me one, possibly two names. And in all eyes concerning, the answer will be correct.

******* IMPORTANT*********

Oh, I can't close this post without mentioning this. If you are reading this Alison, my boys, still fight, but on most occasions they get along great. Their play is usually now on "auto-pilot." And you were right, by the time one brother wanted to do something, the other brother was onto something else. Now, they negotiate with each other, using tactics you taught them over a year ago by taking turns in leading the play. It's not surprising that I heard Michelle Garcia Winner say this week at the conference someone usually takes on a leadership role in a group. To be sure, that has been established Alison has said I should teach them to take turns being a leader (even though the older one hogs up that job often). Still, the two of them have found time afterschool a lot more fun. Thank you Emerge and See. And thank you YAI for bringing Michelle Garcia Winner to NYC! Now I don't have to have to leave home to hear her speak although something tells me I'll be doing that anyway, since there is so much more to learn.

And thanks everyone for reading Can Mom Be Calm?

I promise to issue the last post next week. Ha! There! I gave myself a deadline.

Photo 1: Michelle Garcia Winner (the start) poses for a photo with me. I wish my face didn't look like that. I look a little evil or angry... oh well....

Photo 2: Alison Berkley at Emerge and See's previous location before they moved to Chelsea (still in NYC). My two boys loved playing with her.

The Final Post is Coming Soon

2011-09-02T05:34:00.007-04:00

I know there have not been any recent posts in a long long time but I have been working on a big bang final post. I hope you can come back next week for it. It will be posted after Labor Day.

I hope you'll enjoy it. I am writing this announcement of my final post because I still see Twitter followers coming in and I thought I should write something about the future of this blog.

Truth be told, I have been thinking, writing, deleting, writing something else, not finishing, writing, thinking, rewriting, and thinking some more about this. It's tough to wrap this up as I've enjoyed writing in it for the past two and a half years. So much good has come from this blog including making personal and professional connections as well as my favorite part, writing stories to share with others. The final post will be this blog's last attempt to answer the question, "Can Mom be calm, really calm, not just sedated by medicine, happy via cabernet, but rather, just really truly calm?"

The post will include a story about a huge fight that pretty much ate me alive until the very end. It was so vicious that it even caught they eye of the news media here in New York City. There was a big picture of me and my son in the paper that final day. Someone said to me, "You're always in the newspaper," and I thought, "but it's not on purpose...." I can't wait to share it with everyone. I hope you can come back very soon as I say goodbye. I promise to include a list of favorite blogs to share with you that you may not yet spotted on the blogosphere.

Jenn

Caption: Somewhere on this path of motherhood, my two boys have grown to be two kids who have sometimes been able to go to playground with each other and not need me at all. The little one still needs my help if he comes without his big brother but when the two of them are together, they are best friends. Here they are trying to do tricks on the Yobaby Kick Flipper which is usually under ten dollars for both the board and the DVD. I love this product. I wish they could practice their tricks at home by watching the DVD but we have neighbors downstairs. I could solve the problem by downloading the video to my iPod and letting them practice there but I never get around to doing that.

Still, I do like the culture of skateboarding for special needs kids. I see the older boys in the park doing stunts and while it looks a little dangerous, it looks exciting as well. I don't see them doing anything else (smoking cigarettes or worse..) The boys I've seen are respectful to the people around them. The culture also seems to be friendly to folks who may not be so chatty and just very into watching and doing. Thus is looks like the practice of being a "fan" of this sport is not as fanatical as some other sports. I can't say this for sure but that is impression I have. I still remember Travis from the movie Clueless who was one of my favorite characters. Yes, he did smoke pot but then gave it up to soar new heights as an athlete. I wish skateboarding could be a school sport like football and wrestling. I don't see how the latter two are less dangerous or less expensive than skateboarding might be.

Moreover, the learning that happens when they get together is best done outdoors and not in front of a screen with video game controls (although I do still like that if it is social, at least for now.) The sport seems to promote mutual support and invite constructive criticism and praise from peers in a non-anxiety provoking way. It also looks like it promotes turn-taking but waiting for turns involves watching your friend do a stunt so it is not so boring to wait. It is also independent like swimming, golf, and track which many professionals say is what are the preferred team sports for special needs kids. Last but not least, it uses my kid's favorite styles of learning: visual and video instruction and trial-and-error. When I ask the older boys in the park how they got so good, they usually tell me that they watched other kids or watched YouTube. Sports education via YouTube. What's next? I've even found someone who gives actual skateboarding lessons. I haven't done it yet but maybe someday....

I like the fashion too... just not all the skulls... nope, not into the skulls....why skulls? How do skulls connect with skateboarding? Is skateboarding connected to pirates somehow? I wonder if has anything to do with rejecting society or maybe just feeling like an outsider. I think my sons will likely struggle with finding their place in society once they reach junior and high school. They will need to be with kids who accept them and help them feel good about themselves. I wonder if they'll fit in with the skateboarder kids in the neighborhood. Oh well.. I don't know everything about this sport but for now, skateboarding culture is okay with me.

Can Emotional Intelligence Be Taught From When-I-Was-A-Kid Stories?

2011-01-31T14:46:00.006-04:00

How can I get my son to grow up faster? I don't mean grow as in physical growth (he needs that too). I mean maturity.....

I looked at a couple of books about "emotional intelligence" and I have to say that I lost interest so quickly. It was overwhelming and I still have such little patience for reading, even at this age (perhaps it is just plain worse at this age). And with all that goes on in this house, I barely have time to read any parenting books or even peek at the parenting magazines for which I have paid subscriptions. The magazines are still sitting in the plastic wrappings they came in through the mail.

I really do not know how to teach emotional intelligence. It is a new term for me and all I know how to do is talk so that is what I've been doing - just talking to my son. I have noticed that he seems interested in the stories of my youth which is something my mom did not do much of when I was little. But these stories of what I did and how I overcame or didn't overcome things seem to interest Logan very much.

As I get to know Logan more, I see myself in him quite often. I recognize his irrational fears even before he says anything about them. I recognize his difficulty with reading comprehension even though he can read (decode) words quite well. I recognize his low self-esteem and his preoccupation with what people are thinking about him. I actually still feel like this today. Sometimes when I am talking to someone, I don't hear them because I am wondering what they are thinking about me. It really is ridiculous but it is what I do and I am imagining that Logan does the same. Thus, I am just teaching him about emotional intelligence through examples of my own life. This is my shoddy plan because I can not get through a book that tells me how to teach it to my kid.

Logan and I really do have so much in common. For example, I used to complain about how Logan is so young and yet has managed to get stitches and break his arm before the age of six. Thinking about this now, I don't know why I complained. I broke my leg on two occasions before the age of six and I would have also had stitches but I fought off the doctors so hard at the hospital that they finally gave up on me, my mother told me. (This was in Korea when I was about 3 or 4 years old.)

On one occasion when I broke my leg at the age of 4. It was because I could not voice my concern over a broken slide but felt like I needed to go down it and so I did. I broke my leg but hid my pain for the longest time. I was taking piano lessons at the time and was visiting family that day. My parents asked me to play piano for everyone and put a portable keyboard on top of my broken leg. After playing a few notes, I broke down crying because of the pain. My parents took me to the hospital and there they were told that their daughter's leg was broken. I have a vague memory of my exasperated father telling me that next time, I should tell him what is going on. Ohmigosh, I say the same things to Logan so often now!

So as I recognize myself in him more and more, I am trying to open his horizons about fears, living life, and possibly even spirituality.

I haven't come out and said, you have this disorder and that disability. He already knows that he has some issues but I don't know how he sees himself in the context of the world. All I am doing right now is just telling him about him and myself without the labels. I feel like I can really start talking about the world outside his window. I am telling him that the school across the street has a 1st grade class of 24 kids and one teacher. (He gasped when I told him that.) I am telling him that I went to such a class.

This is such a great time to talk to him about my own life because he is now in 1st grade and 1st grade was so memorable (traumatic) for me. That year was not only my first school experience but it was also my first year in the United States. In Korea, kids start school 6 months after American children do. So basically my parents didn't bother to put me in kindergarten. I learned everything from my big brother anyway who taught me how to read and do math.

But starting life as a student without being able to speak English, having no parents at home until 7 PM, and not having much money was tough on me, to say the least.

When I say no to Logan about buying something and he whines, I remind him about how my mother didn't have enough money to buy me a sufficient supply of socks and so if the laundry wasn't done, I would go to school without socks. I tell him how the other kids made fun of me (true story).

I know that eventually he may tune me out like the When-I-was-little-I-walked-five-miles-to-school-story but for now, the look on his face tells me that he believes me and is imagining what that must have been like. Thankfully, Logan is one of those kids that can walk out of a toy store empty-handed. He may ask and he may even whine but tantrums are rare.

I also let him know that I consider it a gift for him to have me at home. I kind of see it this way because my mother had absolutely no choice but to work. That first year in the United States was probably horrendous for her. She literally worked all day in a garment factory and then brought work home so she could be paid piecemeal.

Last year, I actually cried when I went to Logan's Thanksgiving Lunch Event at his school. It was only when I walked into his classroom that day did a flood of emotions come over me because at that moment it occurred to me that my mother was never able to do this. Logan gets so anxious about me coming to school. Perhaps if he understood how it is not a choice for some kids and how he is fortunate that his own mom could attend an event.... maybe he can open his mind a little more and not be so stuck on what should be and what shouldn't be.

I know that he is immature and yet his intelligence and ability to grasp large ideas seems to allow him to understand some of these things. I suppose you can call it something akin to building upon his strengths. I sometimes wonder what the real meaning of strengths-based programming is. I have to be careful to make sure it is not lip-service and that institutions really walk the walk when they say that.

Back to emotional intelligence: My friend once told me that when she talks to Logan, she feels like she is talking to a grown-up. This struck a chord with me because now I know why Logan is always making me laugh. The things he says is funny because it usually does not come from a child's mouth.

When Logan was four, I told him that Daddy will stay home for a week because he is taking off work and then Logan asked how we will have money to live. I think I laughed for about 15 minutes straight that day.

When Logan was six, he told me that he would buy me a car and I asked when and he said.... "After I go to college and get a job." I didn't realize that he thought of such things so far ahead. I think the future worries him a bit even though he's only 7 years old. But the cute part of that story is that when I joked to Logan saying that I don't want to share a car with his father and that I would want my own car, he said, "Okay, but then Spencer is going to have to help me."

Is that weird? When he says things like this. I never think, "He's so smart." Rather, I think, "do you seriously think like that?" It is hysterical. I wish I had more examples to share but I have a really bad memory now. So bad that I am now starting to do more brain exercises like Scrabble Flash or puzzles. And now, as I write this, I am thinking that I should write his funny-sayings all down and make a book out of it and call it, "Sh*t Logan Says." Really, he makes me laugh like this almost everyday now and strangely he is not telling me a joke to make me laugh.

But I think he is really starting to like the feeling of making people laugh. (ohmigosh, another Jim Carrey?) I think he has been attempting to do this for a long time now but he had been failing miserably. I finally taught him how to tell a joke and he felt really empowered. I also told him how to do a Ha-Fooled-Ya-type joke but it is backfiring a bit. He is starting to make up stories for fun and then admit later that it was a joke but these jokes are not funny. I think in his mind, he is doing some sort of what-would-happen-if-I-said-this-test not really to make someone upset but rather he is experimenting people's reactions.

He is so inquisitive and it is so hard to explain to a kid who sees the world a little differently, "Uh, Logan, people are not toys. Get that through your head buddy." I think he is starting to get the picture but his impulsivity is strong and when he gets an idea to do something...... ugh... trouble..

The bottom line is that I remind myself that this child of mine who can infuriate me in 60 seconds is the same child who when given a choice, will always pick the less expensive toy to lessen his parent's financial hardship and will always share his chocolate and candies with his little brother without being told. It really just dawned on me these days, why he doesn't ask for more Wii games. I thought he was oblivious but I think he doesn't want to burden me.

Maybe, I don't have to worry. On my most sane days, I think he is going to be just fine. Like I said before in another post, I just have to survive his childhood.

Photo: Probably even just a year ago, I would have never thought this picture was possible. But now I have a boy who likes books such as the Berenstain Bears and Olivia. He wanted to buy that book that he's holding here in this picture and of course, I said "Seventeen dollars! No way!" We found a great book on sale though. He clutched it with anxious hands until we took it to the register. I was so happy that finally we could both be at Barnes and Nobles in peace and he was no longer that toddler taking all the books out of the shelves.

Learning to Accept Gifts Makes Me a Better Mom

2011-01-10T14:03:00.001-04:00

When he was 2 years old, Spencer's therapists used to tell me, Spencer is Spencer and Logan is Logan. I did not listen. Since Spencer exhibited traits of inattention and feeding difficulty, I just assumed that Spencer would come to have an ADHD diagnosis as well. That PDD-NOS diagnosis that he received when he was 2 was taken seriously but at the same time, I always felt that he'd grow out of it with therapy.

But as my kids get older, the acronyms have changed. We are now looking at ASD (Autism Spectrum Disorder) as an acronym for Spencer. Many people don't believe it. I am not even sure I do myself but irregardless, one test does say that and he was very much himself the day he was tested.

For Logan, we are looking at adding more acronyms. Obsessive Difficult Temperament could be one and thus ODT. Anyone ever heard of ODT? And no, it is not ODD (Oppositional Defiant Disorder). I have never heard of it until I met Logan's new doctor in the fall.

And there are more labels. The term "gifted," is another. I always knew he was smart but "gifted" seemed like a stretch to me. I asked Logan's doctor about this last week. Kai was with me. And the doctor said that he thought Logan was gifted but not a genius. There are very few geniuses in the world, he told us. Since the category "genius" was ruled out, "gifted" was a bit more easy to accept and my husband is starting to accept it too.

You would think that we would be embracing the notion of having a gifted child but right now, the "gifted" part of Logan is likely causing him a lot of trouble. It is like ADHD X 3. I don't know how else to describe it. You can't tell he's gifted either at most times because he is really unable to finish a lot of things without a grown-up. Sometimes, the grown-up doesn't have to do anything but just to sit down next to him while he puts a Lego plane together can make a huge difference.

The other day, I helped him make a twelve word sentence together and when he sat to write it down, he stopped midway because he couldn't spell one word. He doesn't like to ask for help and he doesn't like to wait for help either. Many times, he doesn't seem to know why he needs to demonstrate what he knows a.k.a. homework or classwork.

This past weekend, I played with a new pottery wheel that I bought for Logan. Spencer is tactile-defensive with his hands so he abhors getting his hands muddy. Nevertheless, I tried to involve Spencer and of course, he said "NO" a million times over. Logan has never said anything about his brother's tactile issue but sure enough, he knew everything and said, "Look mom, tell him to put his finger in here so he doesn't have to touch anything," as he made a huge hole in the middle of his clay work on the wheel thereby giving Spencer an opportunity to touch without actually getting his hands dirty. Spencer wouldn't come near it but I liked Logan's idea.

Sometimes, when I see Logan play with other special needs kids, he looks like he's really struggling because they don't match his cognitive level or they don't share the same interests as him. But this is what we face in the special needs world. There are so many positives in having a self-contained special needs environment and yet, it's not a perfect solution either.

Logan is doing better these days, I think. He has new medications and he is going to start therapy with a psychologist soon to better learn how to communicate what he needs or is feeling. This is huge for him. You would think he could do some of that but my theory is that he is so complex that even he does not know what he is feeling or perhaps he is too ashamed to validate it. For example, I think he feels really bad if he doesn't like someone. I think he also in turn, does not know how to handle being unforgiven or disliked.

I still don't quite understand how exactly he is gifted and how it plays into his behavior. I am committed to learn about it though. I have been frequenting a website called www.sengifted.org. It is really terrific because there are a bunch of articles that one can read about the emotional needs of the gifted. I never realized that high intelligence could really affect someone's behavior negatively.

I always knew Logan was bright but I never wanted to acknowledge that he was gifted. First of all, his IQ scores don't reach the super duper level. He was just rated as above average but Logan's psychiatrist doesn't think that all these tests are accurate when they are so young. Tests or no tests, when Logan's school psychologist told me that he was gifted last summer, I don't think I wanted to believe her because I didn't want to have hope. How ridiculously stupid can I be?

But I realized that my not accepting his giftedness is just as bad as not accepting his special needs. Why am I so willing to accept his faults but not something positive? This denial I had is so "all about me" and not "all about the kid."

I am going to spend the rest of this year (and more) dedicating myself to figuring out how he is gifted and to help him discover what his natural talents are. For now, what I seem to know is that he is upset when things don't come easy to him. I wonder if it is because so many things do come easy to him.

Sometimes when I hear him talk, he makes me burst out laughing. He wasn't even telling me a joke but his words reveal how he thinks and it sometimes amazes me. Some of his thoughts are so mature. He knows what my behavior modification tactics are and I see him employ my tactics on his little brother. It is a comedy in my house and when he does what I do, I get to see how ridiculous I must look when I get angry and expect total compliance.

I also have to figure out how to get compliance and/or cooperation from a child who questions "Why?" to just about anything. Why do I have to do homework everyday? Why do I have to write this sentence? Why doesn't Spencer have homework too? Why do I have to clean EVERYTHING? Why doesn't Spencer have to clean? Why can't I go to second grade now and not next year? Why do you make me do all this work?

Ugh.... some of these questions he asks are asked because he doesn't want to do the work but I think sometimes he really does not know why he has to comply. And it is to those questions, that I don't have many answers. Sometimes, despite it being vilified in just about every parenting book, I really just want to say, "Because I said so."

When I have lost my patience or if I am in a hurry, I do have to be more authoritarian but I know that this works better now because he's seven and soon my "You have to.." or "You better.." statements will be ignored. I need to figure him out better so I can have him cooperate faster. I am even thinking about religion and philosophy at this point. Some of his questions are very ethics-basedl and he sounds like he needs to know more about these things and while ethics has been taught, philosophy and spirituality have not. I think maybe that is why Logan's doctor told me that I might like reading Aesop's Fables to him. I used to love that book when I was little.

On second thought, if Logan really thinks like a scientist, I wonder if introducing him to religion and philosophy will only create more WHY- questions and drive me crazy. Maybe, but I suspect that he needs it so I am going to try. I wish Confucius lived next door. I would just plop my kid down at his doorstep with a box of coins and sacks of rice and Logan could ask all his WHY questions all day long. Confucius would have an answer for everything and would never tell Logan, "Because I said so."

Caption: For his birthday, my husband built him a little "workshop" by converting this little-used closet into a place where he can go and tinker. It has become a place for him to store his favorite items and stare at his ant farm. Also, he doesn't have to be afraid that his little brother will come and mess it up. Spencer is pretty good about staying out.

If you are thinking of doing this yourself, I strongly encourage it. It cost us less than 80 dollars. He bought some board at Home Depot and borrowed a saw and just put it in! We bought a stool and when he is not using it, he just rolls it under the desk and closes the door. We absolutely love it and have yelled at him a lot less for leaving his stuff everywhere. The workshop was his psychiatrist's idea. I couldn't believe what a great job Kai did. I love how the space just envelops Logan's forward view and peripheral view and lets him escape into a place where he can create and find calm.

Lastly... my friend Melissa and I made a yahoogroup for parents of 2e kids in the NYC area. Look for a button on the right hand column if you would like to join it.

I Am Still Here and Still Have Something to Say

2010-12-21T22:30:00.005-04:00

Once a week I receive an email from a free service that tells me how many visitors have taken a peek at this site. I am continuously surprised that there are people coming to a blog that hasn't been updated in 7 weeks. Such a long drop in time is a record, but not a record to be proud of...

It sounds weird to apologize but I do feel bad to myself and to others. I don't know quite what to say except that as usual, I'm a wreck. I haven't had much direction these days. I am not quite sure if I ever did. As usual, there is a lot going on. Whenever there is nothing going on, I frequently take deeper breaths because peace is so foreign sometimes that it almost makes me a little nervous.

What I am learning these days is that I see myself in my children more and more as they grow. I see their behavior and recognize it because I used to have similar fears and strange tendencies. We may not manifest all of our feelings in the same way but many of the things that bother them, bothered me too when I was young. Heck, they still sort of bother me now.

I should fess up as to why I haven't written much lately but why bore you? I have been doing good work these days and I hope to organize those thoughts and write about them but since all of us are getting coupons come down on us from internet clouds above, why not take the time to talk about how to spend your money this season, belated as it is... the sales are still around and we all know that we shop more for ourselves and our immediate family after the 25th.

So here is my list of cool things:

1. Whisperphone: I love this crazy little invention. I had been having a hard time with Logan on reading. When he is not focused, getting him to clean his room is easier than getting him to read. However, I found that once he directed his energy into his voice, he really heard himself read out loud and I could tell that he was helping himself focus by hearing himself read. I've been told in the past that when you read, you are not supposed to read the words out loud in your head but I have always done that. That is my speed. This whisperphone allows Logan to hear himself more clearly when he reads. I also make him wear them when his voice is too loud. He basically ends up screaming into his own ear. He doesn't like that very much. Okay, it might be a little cruel but I don't use it all the time but it does help. I think I paid $7.99 for it. Cool factor: Cooler than a weighted vest for sure! Click here for Whisperphone's homework activities and tips.

2. Ryan's Room Dollhouse - Some people got annoyed with me because I bought my son a dollhouse but I am so glad I got it. Spencer loves pretend play and the house allows him to do it and practice good speech at the same time. It is also seems like it can capture the very core of play therapy. Once Spencer enacted a scene at which he had one doll tell another doll not to be afraid of the washing machine and the other doll said that he would just like to look at it for a while (he is afraid of the washing machine in our building). I was floored when I saw that. A few days later, he finally went to the washing machine area with me! The house was not cheap but it was worth every penny. I only wish the Asian family that fits with the house was not clothed in Asian garb. I mean hello?!? We are not in China and even if we were, I think the moms would be sporting a pair of jeans and a t-shirt and not a silk dress! Luckily these dolls are small. I am going to make the mom a pair of khakis. I am not so good with the needles so she may look kinda homeless but still....

3. Books with Little to No Words- I have gotten really into these books lately. My ADHDer is smart but he can't tell a story for his life. These wordless books are very cool, creative, and makes my kids want to comment and narrate to me. They really need

to improve these skills and I'm learning now that it really hinders Logan's reading comprehension and writing skills which is frustrating for him because the reading part of reading class is easy for him so he checks out and ends up fumbling later. My favorite books so far are: Art and Max, Chalk, The Red Book, Flotsam, and The Lion and the Mouse.

4. Wooden Subway Cars - If you have a boy, especially one with special needs, it is very likely that you have a wooden train track set at home. With these toys, they seem to dance around the border between stimming and playing appropriately. I didn't realize this but to collect the trains of the New York City subway system is actually not as expensive as collecting trains from Thomas the Tank Engine. What is also great is that if your kid loves maps, the trains represent the actual lines of the New York City subway system and so your child can get a map and look at his trains and dream up a million travel scenarios in his head. (Hey, I just got an idea for a speech exercise!) The map is free and available for pick-up at any station booth. Spencer is in love with them so much that I think I will find a way to use them to entice him to poop in the potty. He is being extremely slow in that department. I will start after I give him this book of cut-out subway trains. I got a very nice copy that was advertised as "used" but it was brand new and super cheap.

5. Snap Circuits Jr. - A couple of months ago, Logan took apart a cheap plastic toy jeep that ran on batteries. He cracked it open to see how it worked. When I saw that, I immediately started balking at him. What if he hurt himself? But I knew what he wanted and so I got him this kit even though he is not 8 yet. What I've learned so far is that I must watch him to make sure he doesn't give up when it starts to get a little challenging, eg. a word problem. Each experiment comes with a checkbox which I love. It helps Logan to remember to not skip to #101 (the last one) when he didn't even get past #19. I also told him some basic rules about what not to do to prevent shortcircuiting (as described in the instructions) and so far he has been very careful about that. Anxiety can be a friend in this situation.

6. Cardboard Sheets - Recently, my building installed new windows into each unit so they left a ton of cardboard pieces (heavy duty) in the garbage every night. Naturally, I picked up a stack and took it home and with another existing box (big), my two boys and I built a "house" or "elevator" whatever... I gave them stickers to decorate and made some windows. Logan taped pieces of his K'nex toys to symbolize buttons in his home. I remember playing with cardboard boxes when I was little. They are the best toys and it is free. Husband annoyance factor: med-high (he is tired of seeing the boys' stuff taking over the whole apartment)

7. Digital piano- I can't help it. I know things are hard for my kids but I really want them to learn how to play piano. The trouble was to find something affordable. I found one for a good value but there were too many bells and whistles on this thing. I really dislike extra buttons. You are only asking for yet another reason to yell at them. So I got something that doesn't have too many buttons and also had weighted keys to give the feel of a real piano. I also love the way I can turn off the sound in an instant while teaching them how to play. It helps them slow down and pay attention instead of impulsively banging on the keys. I absolutely love my piano. I can play music with headphones at night while everyone is asleep. It is better than a real piano in so many ways. Guitar center gives you a great warranty. Even if you break it or spill water on it, they will fix it or replace it. I haven't tested the warranty out yet but that is what they promised. But my kids have been really good so far. I put up a sign on the first day that says "The Piano Only Makes Music" and they've stuck to the rules so well that I don't have to hide the plug anymore.

8. Handyman/Carpentry services - I really wanted to make a hideaway space for Logan. Tents are great but they end up getting broken and it is a pain to fold out and fold back for storage. However, I found these curtains at Ikea and I figured out that I can hang them around their bunk bed so that each kid could have the private enclosed feeling of a tent without needing extra space. The curtain would be retractable too so that the "tent" could easily disappear and reappear when wanted. I have already purchased the curtains but have not put them up yet, I am doubting when I will actually do it. I am not a handyman in anyway but Kai doesn't like this idea so there is no chance he'll put it up. Anyway, what my point is that we need to look at handyman services as something that we should be willing to purchase, just as much as we are willing to purchase a Nintendo DS. While our children may not have any physical disabilities, if they did, I am sure we would be more willing to pay for alterations made in our home. We should give our neurologically-challenged kids the same consideration and be grateful that such alterations and additions could possibly make a big impact on them.

I should mention that my dear husband did follow the recent advice of our doctor and created a work closet for Logan. We will present it to him at Christmas time or on his birthday which is coming up soon. The workstation will allow him to tinker, build, or do whatever without his mess disturbing others or causing a hazardous condition for his little brother. It will also help him to not lose things and the fact that he's practically inside a closet will help him to focus. When Logan's doctor suggested this idea, I realized how important it was for Logan to have this space. I also had to admit that it was time to teach Logan how to really make good use of screwdrivers and other tools since I want to teach him how to use them safely. Kai resisted at first but the next thing you know, he was using his day off to saw and hammer and make a beautiful space for Logan, complete with music speakers for his new iPod Shuffle (for Christmas)! You would never think it was possible in our small urban space but so far, it looks fantastic. My kids don't really use their closet anyway since these hyper little guys would rarely ever be seen in clothes that need to be hung on a hanger. Total cost: only $40.00 sans tools and storage shelves.

9. Classes for Twice-Exceptional Children - There is a recreational-educational center called The Quad Manhattan in New York City that opened earlier this year for kids who are very bright but also have significant special needs. I signed Logan up for a mini-session and I wish I could put him there more often but travel time and finances are always issues for us. Understandably these classes are not as inexpensive as a no-frills karate class in the neighborhood but then again, the way things are taught and the type of subjects they teach to kids are just perfect for my twice-exceptional kid. Thus, in essence it can't be too inexpensive, just like all other special needs classes. The difference is that these classes fit my kid's interests and intellectual abilities while at the same time meeting his needs for a small class size and knowledgeable (about their needs) instructors. I don't know where I could find a class that would teach a 7-year-old things like filmmaking, electronics, rock climbing, website building and even photoshop! Actually, when you think about the kind of classes they are offering, the tuition is quite reasonable. This is what I explained to my husband and he was finally able to understand it that way.

10. Choiceworks- I have said enough about this already but I finally coughed up the extra cash and bought myself the CD with extra images and also some extra stickers and magnets. Boy, was that a good move. Now, when I put the "choice time" magnet on their schedules, I can refer to an already placed row of magnets that actually show what their choices are. Honestly, if I don't tell them what their choices are, they will likely pick electronics and I think that gets old for even them. I realized just how hard it is for my kids to make choices and stick with them so not only is the schedule good for them but they really need to learn how to think about what they like and want. I think the Choiceworks helps them with that a lot. The only trouble is to stay consistent as the parent. I need to start out small so that not only they can get used to it but also I need to get used to it. We have all used it many times but incorporating any behavior modification technique on a daily basis isn't easy.

OOOH, last tip of the day: convince your child's teacher to make an Amazon wish list. Parents can know what she needs in the classroom and can donate them throughout the school year. She can put things that are not offered by Amazon as well and of course, if you happen to have the item at home, you can donate it and reserve the item on the list so that no one else will buy it. It's a very private way to donate too since only the teacher will know who bought what. I like that.

And that is all folks. I will post again hopefully very soon. I wish everyone a very happy holiday season. Thank you to all who have dropped by and thanks to my kindred spirits who have lent me a hand whenever I needed help.

photo 1: Logan uses his Whisperphone. He has been doing homework on his own these days. It is a miracle. Sometimes I take pictures of him doing good work to then show him later so that he has a visual picture of what he looks like when he is calm and productive.

photo 2: Spencer at work. We must tackle those sensory issues. He is still so defensive with his hands. He's been making some progress though. He's got a very good OT.

photo 3: Oops, I did it again. Last year, around this time, I broke my finger and had to get surgery. This year, I managed to not get surgery but rather give myself a nice 2nd degree burn on my writing hand. I have been spared dishwashing duties for the past two weeks but otherwise, this hand gets no brake.

Really, Just How Much Should You Pay a Teen Babysitter?

2010-11-04T11:40:00.003-04:00

I think I just got my first internet ass-whoopin'. I didn't expect it at all but that just goes to show you how naive I am.

Some background: In the past year, my teen babysitter has grown into a confident and adept teacher to my children. She is so fantastic and really beyond "babysitter" status now. In fact, she doesn't really do the traditional babysitting so much. She does things that are more akin to homework help and play therapy.

In the spring of this year, she signed up to get training to become a babysitter to special needs children at a JCC here in New York City. I also promised her a raise when she got her certificate of completion. Saying that she had learned so much from us, she tried to refuse it when she finally did get her certificate. Being an Asian American woman, I have been treated as a doormat on more that one occasion so I told her that she should learn how to accept what she deserves. It's harder than you think especially when you are a nice girl like Catalina Lopez (her real name). I also told her that I gave her a raise to stay competitive because it is in my best interest that she continue to work with my kids. Still I knew that the pay could have been more but that raise was all I could afford since she came on a regular basis and thus I would see my money leave me on a regular basis.

Raises.... That seems to be the big word right now because Catalina was featured in a column in the New York freakin' Times!!!!!! The story focused on how this program at the JCC helped turn this wonderful young person into a babysitter extraordinaire. In truth, she was always great but the training she received really gave her a stronger knowledge base from which she could be more effective with my children.

So when Susan Dominus, who was one of the most respectful and kid-friendly reporters I've ever met (I've met a lot), asked me how much I pay Catalina, I told her. I felt bad about it not because I didn't want people to know what I pay her but it was more to protect her privacy so she could have less pressure when negotiating rates with others. However, I didn't feel so bad when I found out that Catalina also told the reporter what she earned as well because if you think about it, salary or at least salary range is an important part of the story. If you are going to talk about how great teen babysitters are, then you must talk about how financially feasible it is.

Never did I imagine the verbal barbecuing that I would end up getting. I don't know why but people actually thought I was paying her $8 an hour to watch two children even though nowhere in the story was that ever written. Nevertheless, Catalina only gets $8.50 an hour from me to work with one child. She would receive more if she is babysitting both of them. In the story, the Ms. Dominus wrote $8 per hour because when she was factchecking with me, I didn't correct her. I was too embarrassed to point out the extra $0.50 an hour.

Irregardless, Catalina has grown into someone whose skills and experience could confidently command way more than $8.50 an hour from a family, whether that child is neurotypical or not. She doesn't just "watch" my kids and make sure they eat and sleep, she will get on the floor and really play with them. Also, if I give her a task like a puzzle or a worksheet to give to the kids, SHE WILL MAKE SURE IT GETS DONE.

However, I found my face starting to heat up as I read through the comments posted by readers of the article and saw that I was being criticized for the low pay. I am not sure if everyone thought I was paying her $8 an hour to care for two children but still, I couldn't help but feel terrible that so many folks may have missed the point of the story.

It is comments like these that make you not want to share your stories publicly. But I am quickly comforted by the fact that this story has enjoyed a most awesome response. On the day of publication, the JCC told me that they received calls from around the world asking them about their training curriculum so that they could replicate it in their area. Could you ask for better results? Ms. Dominus' story about Catalina and the JCC helped special needs families everywhere.

Back to salary- This is how I see it. You have to be as fair as possible because it is good for all parties involved. This means you have to pay as much as you can afford and hopefully for the family's sake, that will be at a competitive rate because a good sitter can't be kept at low pay unless there is some other draw like learning opportunities, flexibility and short commute. (Thank goodness our sitter lives in our building). All in all, I know that the rate I pay is all that I can afford. I wish I could afford more but I also wish my kids didn't have neurological issues and that I wasn't overweight.

Not that I'm not ecstatic about how skilled Catalina has become, but honestly, my original intention for hiring a teen was not really for the kind of work she is doing now. All I had wanted was to have someone safely occupy Spencer while I worked with Logan on academics and therapeutic activities. Back then, this was my only solution to not being able to find an afterschool program that was not just a good fit for Logan but also affordable and nearby. In our last effort to put him in to a neighborhood martial arts program, we were asked to leave before the one hour class was even over. I wasn't going to bring him back anyway since the other kids were so mean to him. That was a very bad day.

Bottomline, I was basically doing my own version of a homeschool-afterschool program and Catalina keeping Spencer out of our hair made it all possible. Even with this reasoning, it was hard to get my husband to agree to spend the extra money at first. He grew up in a Chinatown ghetto where he shared a bedroom with three older sisters. It is also important to mention that this apartment had no living room or dining room. Thus my "need" for help in order to pursue Logan's academic enrichment and a little alone time for Mommy and Logan was not really something he could easily understand as a "need." But like most things about the kids, my husband usually comes to my camp eventually.

But who knew that she would evolve into a dynamite mini-therapist? I certainly did not but there is no question that my family is extremely lucky. Again, I am SO SURE she can be paid more elsewhere but I think she might still be with us for other reasons. So to end this post, I'd like to leave with you what I've tried to do to make this job more meaningful to Catalina. Perhaps you can provide this to your teen babysitter if you have one.

I actually have some experience directing a youth program in New York City and I can tell you that many teens lack things like internship opportunities, professional connections, workplace communication skills, and self-promotion skills like resume writing and interviewing. Thus with college admissions and jobs being so competitive now, these teens really could use every boost they can get.

With that knowledge and my worship of all that is Catalina, I offered to help her write her resume, offered to help her find more jobs, and offered to help her with college applications. She has great parents to guide her but one more adult in her life can be helpful too. Schools are just too overloaded to give the amount of guidance that kids need now. Additionally, sometimes we'd just talk about her future. When she got her special needs babysitting certificate, I knew I'd scare her but I actually told her to negotiate her raise with me (even though I had already decided what to give her), because I wanted her to learn this valuable skill that so many young women often lack. While she hasn't taken me up on all of my offers, I hope I was successful in letting her know that I want to help her grow.

Additionally, I paid for her time to be trained. This is really beneficial for your babysitter. The training course was free so I just paid her registration fee and of course I made her ask her mother if that was okay because that is something that every employer of a teen should respect. I also paid her to watch Spencer's therapy sessions when she was off from school and the therapists had been coming to our house everyday. Once we had a therapy session outside of the home and I had her come and watch it because I thought it could help her. Since she usually babysits for us at home and has no commute, I paid her for the time that she traveled with us back and forth as well as the time for her to watch the kids' therapy session. In fact, whenever she ever came out with us, I would always pay for the travel time.

More importantly, I made sure that everything, and I mean everything was okay with her mom. This is really critical. If your babysitter's mom doesn't like you, then well... I don't think you will have her in your life too long. If I needed her outside of our neighborhood or did something else unusual then I would expect that she would have told her mother. From the beginning, I made sure that her mom knew my cell phone and knew to call our home if Catalina didn't answer her cell phone. I made sure that I would have Catalina's emergency numbers too. I don't believe you have to be chummy with your sitter's mother but if you are in her good graces, this can only help you.

Lastly, I try to set her up with learning opportunities by connecting her with other special needs professionals so that she can expand her network and attain some valuable advice. This can not only help your children right now but for the teen who is considering a career in special needs education or therapy, this kind of thing is just priceless. Current professionals can advise them on what are good college programs, where to find scholarships, and possibly know someone who can help her get admitted into a good school or help her find a good job later.

I thoroughly enjoyed doing these things because I feel grateful for the opportunity to be a part of Catalina's growth. Additionally, being a mentor to a talented young person definitely helps alleviate some of the emptiness I feel since I decided to press the pause button on my own career because of the kids.

Let it be said that all of these perks do not necessarily replace good wages. Some of the best internships are great because they are paid and so the person who needs to learn but also needs to earn can do both! Otherwise, you have only the privileged few that are already well connected get the unpaid-but-very-valuable learning and networking opportunities. I don't mean to sound naive. I am aware that the situation that I just described is basically the real world in which we live but, as employers of people who have a big influence over the beings most precious to your heart, we can all do our part to balance out this equation one teen at a time.

Photo:

If I had more money, I would have Catalina take Spencer to his soccer class. Because he wants to impress her so much, I know he would try that much harder to fight off his anxiety. When I take him, he usually just runs off the field and straight to me whenever the class becomes too stressful. In this picture, I was not at soccer class that day, my husband was.

P.S. One last thing! Feed your babysitter! They are young and most likely are still growing. If you have them afterschool or around dinnertime or really anytime then you better have some food in your house. The teens most likely enjoy the same things that your little ones do. Catalina loves chocolate milk and white cheddar puffs just like Spencer does. Seriously, if you ask her to feed your kids dinner then it is safe to assume she needs something too. It could be a doubly good thing if your kid needs a good model for eating.

Mom Sucks at Transition Too

2010-10-28T09:42:00.011-04:00

This is probably the third or fourth post I have written since my last post in September. I start them and come near to finishing but something gets in the way, namely me.

One of the drawbacks of sending your kids to an outstanding special needs school is that an outstanding special needs school will be calling you frequently to let you know what is going on with your child. There may inevitably be some work attached to these phone calls, most of it self-imposed. Nonetheless, there is stuff to be done to help the kids and of course, it is the beginning of the school year so you want to set some good habits to continue for the rest of the year.

The news that comes home will most often not be so good to hear. I know that they have special needs and that is why they are where they are but still I have a hard time listening to the 101 challenges that they have. I have been trying so hard not to let my happiness be predicted by their performance in school for the day but it is so hard to live by those words. I dread the phone ringing and when my Caller ID shows the school's phone number, I try to remind myself to hold it together when they talk to me. While I don't cry on them, I am sure I sound like I will just shrivel up and die. But really, how is a mom supposed to respond when she is told that her three-year-old is putting his hands on his classmate's neck because he doesn't know how else to say "Hey, I like you. Can you play with me?"

Luckily, as I write this post, both boys have been doing a little better in school. We have even changed medication for Logan AGAIN. I am feeling less and less insecure about school. I have come to recognize that I have a little complex about the school informing me of my child's challenges. When the news is really bad, I always worry if they will ask my child to find another school. I know in my head that my child should leave ASAP if he is not wanted. But I can't help shake the feeling that my children might be unwanted when a school calls me to tell me they are having a hard time. If they had to leave because they were too challenged, I would go crazy because it would likely mean that they are worse off than I originally thought.

When I get a phone call telling me about a continued problem, I have even asked them, "Are you thinking of suggesting he go to school somewhere else?" The answer is always "no," but still I worry. It is silly but I had a bad experience with Logan in a special education setting where he was asked to leave and it was very unprofessionally handled. Even though I received a letter of apology from the school, the damage has been done. I don't think I'll ever get over it until they graduate from college.

It is so much easier to worry when I have nothing else going on. While I am busy everyday, I don't think I am building anything right now. I am cleaning a lot. I am sorting and organizing all of my piles of things to sort and organize. However, they are really just another item off a to-do list that has no end. Since both of the boys are in school right now, I am actually experiencing what it is like to have seven hours to myself where I am not running around trying to get it all done before I have to relieve a babysitter so she can go home or my husband before the kids drive him nuts. I don't mean to sound ungrateful but it is not as great as I thought it would be.

I think that another reason why this blog has been so neglected is that I have been sad. I didn't realize it but I am feeling quite empty and anxious. I will just say it now: I have been trying to fill the void with shopping online. I don't know why people think shopping online is a big time-saver. It is not. It sucks up so much of my time especially when I am trying to save money.

I read so many of my emails that advertise sales, discounts, or free shipping because I think I might end up saving some money. However, because I am shopping on someone else's schedule, I end up diverting myself from my own goals and perhaps wasting way too much time. Sometimes, I see a sale and remember that I need to get something and then after spending time looking through their site especially, their overstock section, I end up not buying anything and find that one hour has been wasted. I get so depressed afterwards.

There are other things that I do and don't feel I have anything to show for it. Most of it involves the kids. I look up things online to buy for them. I email and call people looking for new opportunities and programs for them. Most are dead ends and are too expensive but still I keep trying because I love to find out things. However, after I eat my breakfast/lunch at noon because I can no longer ignore my hunger (or my stimulant wears off) and have a moment to break, I realize that it is almost 2 PM and I haven't even thought about dinner (all three of them not including mine), I haven't made their afternoon picture schedule, and I haven't showered either. This is not what I envisioned my days would be like once they started school.

I imagined a cleaner home. I imagined less chaos. I imagined a happier husband and a happier me. I imagined getting a part-time job. With all imaginations aside, I think only my home is a little cleaner and I wonder if only I think this. Perhaps my husband would not agree. He doesn't see the K'nex bin organized into 10 different compartments categorized by shape and size to make it more fun and easy for Logan to build things. He doesn't see that I cleaned out all the dust and debris from under the foam mats. He doesn't notice that I wipe off all the urine from the walls and the floor from the Logan's poor aim on an almost daily basis. He doesn't know that I spend so much time on the phone because of the kids or with another special needs parent who I'm helping or is giving me help. It would be so nice if I just knew that he knew how much I did and that all this work is indeed important. He may know it all and believe it is important but I can't tell that from the way he acts towards me.

Irregardless, this stay-at-home thing is really tough because I am my own boss and I hate it. When I was a publicist, I would be racing against deadlines imposed upon me by journalists or my bosses. There was pressure almost everyday and I needed it to focus and work faster.

Now the pressures are different and attaining focus is really challenging and while I may be productive, I don't feel like that at the end of the day so I am making some changes. The first is to get over my shame and start writing again. I learned something great about facilitating play between siblings at a place called Emerge and See here in New York and I will be writing about it soon. Additionally, I have decided to stop reading my sale emails. I am going to just put them in a temporarily folder if I want to read them later. Hopefully, I will have the courage to take myself off these lists for good one day. I think I am wasting more valuable time hunting for deals than I am saving money. I have to try to remember that.

The other thing I am going to do is to make small to-do lists and try to stick to them. My to-do lists get so long. It is almost laughable. Lastly, if I veer off-course, then I am going to write down what I did. Hopefully that will prevent feelings of depression because I can't remember what I did that day. This happens all the time.

I also would like to say thanks to all the friends that wrote and called me because they haven't seen a blog post in a while. If any of you thought I was depressed, you were right. I might have told you otherwise at the time but I think I didn't even know myself how sad I really was. It is so easy to lose yourself when you feel like you are racing to help your kids. Everyday counts, especially when they are so young. I also think I couldn't share anything because I felt so empty inside. I have been trying to fill these voids with bargain shopping for things we need or want and I have been so ashamed of falling into this trap. But hopefully, I have made some progress and I'll be doing more worthy things from now on. Thanks everyone for checking in on me!

Photo: This is Spencer on a little subway-themed stage before one of his soccer classes. This child loves subways! What is it about special needs kids and subways!?! The soccer class started out good but turned out to be really terrible. I was so frustrated that he could not follow the class. The class changed their drills every week and it was really hard on him. I don't know why I let this class upset me but it did. This is what happens when you just plop them into a program for typically developing kids where the teachers have no idea what "special needs" really mean. I kind of wanted to see what happened when I enrolled him and hoped for the best but of course, when it wasn't so great, I let it upset me. I am such a fool. I even tried to use chocolate to encourage him to stay with the group. I really did whatever I could to get him to stay in the class without my help but it didn't work. He did okay at the very last class (after 8 weeks) and I think it was because the demands were decreased and there were less kids in the class. We might try again next semester but I may decide against it. I don't know..... I am just a wanna-be soccer mom. Pathetic, right?

How I Survived 4 Weeks of No School

2010-09-13T07:41:00.004-04:00

I feel like my summer started on August 13th, the day when Logan's summer program at his school finished. He is lucky enough (or unlucky enough) to be eligible for a 12 month special education program. The extra two months are given to prevent regression says the school system. I agree with that but for me, those six weeks of education at his school is my answer to what to do about Logan for summer camp, since obviously I would have a hard time paying for something that would have trained staff to accommodate his needs.

Even though I usually dread those few weeks when I have him at home without the support of my husband or his school, I am happy he was home this summer. This is the time when I learn about him the most. This is the time when we can play without worrying about school bus schedules or packing the lunch that he doesn't eat. This is the time when I can challenge him myself and take him to greet new challenges, new people, and new places. Spencer gets to do the same because this is the one time of the year, I will allow him to miss therapy at home. He finished that process anyway since he starts school today as a special needs preschool student. I miss the therapists at home but am relieved to have it all done at school now.

I am pretty much amazed at how much easier and happier this summer is. I wasn't sure what was making the difference and then I figured out that there was more than one factor that was making the difference.

1. I have good drugs. When my anti-anxiety medication stopped my digestive system from working, I was in complete misery but I kept going and my body became used to it. Now I don't feel so sick anymore and instead, I have been able to stabilize myself and have not had one panic attack or panicky feeling. I am even more patient now. I think that was the key to making this difficult time work for me.

2. I am just flat out ignoring my husband. Actually, that doesn't sound exactly right. What I really mean is that I am not going to want him to be happy just so I can be or stay happy. He has always been so quiet but sometimes I am uncomfortable with that. My husband is his own person and if he goes to a social gathering and doesn't talk to anyone then I am not going to worry about it and wonder whether I did anything wrong. I need to leave him be and hopefully he'll come around. Sometimes I ignore him for a couple of days and I swear he doesn't notice until maybe the third day or so and then he starts talking to me a little more. I'm not playing hard to get but perhaps that element needs to be explored more.

3. I was busy keeping them busy. I ignored everything else. I am behind on just about everything and I have decided not to care. When they were home, I barely looked at my computer or talked to anyone on the phone. I didn't even post on this blog for over 4 weeks! My mile-long to-do lists were gone. Everyday I woke up and just knew that I was going to get the kids to do something fun and that I wouldn't be scared to be alone with them.

4. I put Logan to bed later and I decided just to wake up earlier. I always used to give him his sleep aid earlier and just dealt with him waking up at 5 AM but I realized that it did no one any good. Instead, I decided that he can stay up a little longer and do the things to occupy himself quietly that I wouldn't allow him to do in the morning for fear of creating bad habits or waking up his little brother such as playing with the computer or playing the Wii... etc. Now he is up later at night and my husband can share more responsibility in watching him since I always had morning duty.

5. More importantly, I decided to shift my personal time from late evening after bedtime to early morning before the kids woke up. This change made a critical impact in my daily overall mood. I had energy to do things like yoga, write emails, read the news. Before when I used the late evening to make time for myself, I basically just watched t.v. because I only had enough energy for that. I didn't like to write at night because my mind would always be racing after I finished and then I couldn't go to sleep. Now, I wake up as early as 4 am and I absolutely love it. Because Logan's slept in more, I had the time to myself to be quiet and do yoga and just relax after a full night's sleep.

5. Logan's new medicine is working better for him. As soon as his vacation started, I came to better understand the pattern of behavior that they saw in school. We decided that perhaps his extended release formula was possibly not appropriate for him so we switched things around to a short acting stimulant and things seem to be better for him (and then for me).

6. I have become a playdate whore. I ask everyone for a playdate. Sometimes I get a yes and sometimes I get no response at all. I don't know if they are avoiding me or my kids or both. I just try to not take it personally and just move on. I understand fully that my kids are not the most socially appropriate peers for their child. For me, it is not about Spencer and Logan having typically developing social models for friends. At this point, it is just about them being happy with other kids. They also played with kids who have special needs and have had fun doing that too. Playdate whoring has led me to understand that all kids are unique in their own special way and that despite their odd behaviors, Spencer and Logan can be fun companions that children may actually seek.

However, on that last note, I really have come to appreciate the extremely kind souls that have seen the goodness in my children and have encouraged them to be with their own kids. This is relatively new to me. I literally asked them why they haven't shunned me and my kids. (That will be a future blog post). This summer has been so interesting and fun and it is all because I put my kids with other kids every single day I could. It didn't always work out great but I can see that with each playdate, they look forward to more social interaction and can improve their play and conversation skills.

I also found that me being with other parents eased my own anxiety and elevated my patience with my own kids. Everyone remarked how patient I was and I told them that I am not so patient but the difference is similar to what you experience when you are eating out with a group. Sometimes, you don't pig out in front of them because you just don't want to look disgusting. You almost see yourself through their eyes and then you regulate yourself. For this reason, I often did not lose my temper. That is what ended up happening as I surrounded my family with other families. It was healthy and healthy is good. Thanks to all the moms and kids who played with the ADHD Brothers this summer!!!! Not only did you make our summer bearable, it actually turned out to be a blast!

caption: First day of school this morning. Logan left our apartment with his shoes not quite put on. This is how he usually leaves the house. Here he is lying on the pavement (on top of his brand new schoolbag!) putting his shoes on.

Is Change Really that Good?

2010-08-04T00:05:00.003-04:00

I dread this month so much. I can't believe it is already August but here it is and I feel my chest tightening and my breath shortening despite my new medication.

I don't like change except when it comes to more variety in food especially when I am not the one making it. In my dreams, I will have sushi for dinner for one day, the next day barbecued Korean short ribs, and why not chow down on curried goat the next night? That is the kind of change I can live with. However, aside from that, change blows.

I always took forever to adjust to new things even when I was little. Usually, I am unhappy with the way I handle new experiences of life. I find myself saying things like, "I can't wait to do this the second time around, I know so much more now...." I said that about my Disney trip and my trip to China. I said that about breastfeeding and while I won't go back to high school or college, you will often find me lecturing young people about their academic career decisions. Change forces you to make adjustments, reprioritize, and of course, just do plain ol' thinking. These are things that I don't like to do and yet, change can be so helpful.

I bring this up now because Spencer got a new ABA therapist to work with him for 2 weeks while his regular therapist took a vacation. After spending 7 days with him, she recommended that I get his vision checked and also suggested that he was possibly left-handed!!!! Spencer has 1-3 therapists passing through our home every weekday for the past three years and not one person had suggested that to me. Also, I am his mother. How could I not see that he could be a lefty? But here is a fresh eye that pointing out something we might have been blind to. She suggested that it could be the reason why he hates writing.

Additionally, last week, I asked our teenage babysitter Vivienne* to take Spencer to the park. They usually play and work at home but I figured that something good could happen if Spencer went to the park without me. It was also a really hot that day and I just didn't want to get all sweaty but felt that the boys should be outside.

You would think it is not a big deal, allowing someone else to take Spencer to the park but to me, the park is a big deal. I am very hands-on at the park. I love chatting with other parents but I still don't like to leave Spencer idle. It is not because I see him hit other kids (which has happened) but it is more to help Spencer spend every minute in the park playing appropriately. I hate to see him off and alone which can happen oftentimes or if he plays with another kid, he becomes very rigid and doesn't know what to do if the other kid mixes it up a little. If anything, I will be his playmate on the days we don't find anyone to play with him.

Building up his social skills is my number one priority right now. It is not easy when our playground is on top of sand and he doesn't like sand. And up until recently, he didn't like sprinklers either. But I can usually coax him to get on and stay on the sand now but only if I am his playmate just as it is now with the sprinkler. Hopefully, I will one day graduate from playmate status and be promoted to the position of Looming Shadow.

When Spencer came back from the park with Vivienne, he was smelly and dirty. These were signs of progress but then she told me that Spencer went on the swings which he has not done appropriately since he was 18 months old. It was amazing to hear about it but then today, I took him to the park without her and he asked for the swings and I realized the tremendous value of change/new person in his life. A new person doesn't know your fears and so they can not readily validate them, let alone accommodate them. It gives an anxious kid the perfect opportunity to try out some fearful without showing great failure because the person has no idea that he just screwed up at trying to face a fear.

Could that possibly be true? Could a 3-year-old be that complex? Does he really worry about what I think of him? Could that be why he doesn't want to try doing something fearful in front of me?

I quit my job three years ago so that I could increase therapeutic opportunities for my kids but now I wonder if I should be working out there in the world and entrusting my kids to others that won't validate their difficulties like I do.

Either way, it is a valuable lesson to learn and one that is timely as Spencer will soon leave our state's Early Intervention program and receive his services through the school system. This means that the therapists that he has had for over two years will suddenly stop coming to the house. This could be traumatic for a kid who probably thinks that every kid has "teachers" coming to his house on a daily basis.

I know that Spencer is so used to them because he is sort of defiant during sessions now and yet that just tells me that there may be a huge vacuum effect once they leave. I become anxious just thinking about the moment that Spencer realizes that they won't return. Will he understand? Will he be sad? Will I be there when he figures this out and recognize it for what it is? Probably not. I will probably just say something like, "What the hell is wrong with him today?" and never figure it out. Like me, for Spencer, change sucks big time.

We have already started telling him that he will go to preschool in September. Spencer doesn't know what September is but he knows it is coming soon. I already bought him some t-shirts and a bookbag with the school's logo on it. He already started to use the bookbag. I let him because he is going to need as many familiar things as possible once he starts school. Luckily for us, he is really looking forward to going to preschool.

I am also going to plan a farewell party for each therapist during their last session so that he knows that the last session has a special significance. We will eat cake and play games and hopefully they will get to see the fruits of their labor as they get to see him do something totally different on their last day with him.

Truthfully, this will no doubt help me too. I am very afraid to see them go. It will be weird not having these adults come to my house everyday. Because of them, I clean my toilet and wash my dishes, and clean the bathroom sink frequently. They are also easy targets when I crave grown-up conversation.

I also know that since Spencer will be out of the house for over 6 hours a day, I may just freak out from the huge change. I was hoping that I would have some part-time work by the time they started school but that has not happened at all, not even a little.

Spencer went to the park again with Vivienne and she let him pour water on her head and then HE ASKED HER TO DO THE SAME THING TO HIM! I was floored when I heard this. I thought I was super cool when I got him in the sprinkler. She takes him to the sprinkler for the first time and he asks her to douse him with water. Maybe if I leave him with a total stranger, he may start speaking full sentences with 100 percent clarity and befriend 5 preschoolers within 24 hours.

Maybe what this family needs is just a little bit more courage. I am so scared to see him fail which I will equate as my own failure because I am the one that put him in that situation. This fall I am going to rock the boat again and will put Spencer in his first afterschool activity without me by his side. It is not for special needs kids either. The instructors will likely know as much about PDD as they know about Ancient Chinese literature. I am going to put Logan in a soccer class too. Last year, we took the leap (aka - learning alongside typical kids) with chess class and we came out alive and still loving chess. Now we are going to take his love of kicking a ball into a whole new level.

This year, my goals for putting them in the class is not so much to expose them to typical kids and have them practice following direction. Plainly and simply, I just want them to make friends in their neighborhood. I love where my boys go to school but for young children, friends must be within walking distance. That is the biggest downfall about having your kid go to school far away from home. None of his classmates live nearby. They don't even live nearby each other. Each playdate only comes after a tennis match like exchange in emails between busy well-meaning parents. There is no spontaneity. There is no convenience for the parent.

This fall I earnestly pray that they will allow themselves to enjoy their classes and will help themselves to become brave enough to make new friends. Maybe if I send them to the class with someone else instead of me, they might transform themselves into non-anxious calm children and have a blast. That could be a thought but I wouldn't want to miss witnessing their moments of pleasure and triumph and/or sadness. I will be there for them and probably increase these chances of success if I can just wipe the worry off my face. Now that would be a real change and perhaps the only change they really need.

* Name changed because she is a minor

Photo: One of the reasons I do not let Spencer be idle is that he may go off and do something not functional if he is feeling overwhelmed or uneasy. Here he is at a recent birthday pool party and if wasn't clinging to me, he found comfort staring at the lines by the edge of the pool. This shot was taken by my husband who probably may not see what I am seeing. Instead of deleting it, I am keeping it and posting it to remind myself why is important to keep challenging him to join the party. It is a reminder to myself to do the same. He has the lines, I have my computer and insurmountable to-do lists as my excuse to be reclusive. It is painful to look at this picture. Don't be surprised if this one disappears.

Sick of Worrying Myself Sick

2010-07-29T13:52:00.003-04:00

I worry so much. It is ruining my health, my life, and my relationships with my family.

I wish I could just stop worrying but I just can't turn it off. It is almost like it has a life of its own. I also never know when my anxiety is taking over the driver's seat. It's like one minute I am fine and the next minute, I am struggling to take deep breaths.

I really really hate this. I wish I could be fine and not have to take medication to help me stop worrying. I have nothing against medication and would gladly swallow all those tiny pills but the side effects are killing me. The latest medication that I am trying has given me such bad constipation that I actually had a backache. I don't know what to do about this. It seems like the benzodiapenes do not work well in the long term and the SSRIs do work well in the long-term but cause me such a horrible GI discomfort. I called my doctor immediately and she told me to try some things like flax and coconut water but really the best thing that helps is my stimulant medication. I actually have to have both components to feel like a normal person.

It is at times like this that I think about how my son's body is handling his own little pharmaceutical goulash. Does he feel as uncomfortable as me? I suppose I should be checking his stools too. He is still so young that he can't verbalize a lot of feelings but I should start asking him more. Maybe I can make some visuals.... hmmm....

I wonder what would happen if I just dropped all the drugs and just did yoga for an hour a day, everyday, undisturbed. I bet that would make a difference but who could guarantee me this time? Only I could and I know that I could never swing this. Maybe I can try once the two boys are off to school but then I promised myself that I would use the time to find a part-time job. I know women who are raising two kids with special needs and have a full-time job. I should at least try to manage a part-time job, right? I am sure people will tell me to take a break and I will but that break will last until the first day that I don't have a mile-long to-do list, I will think about getting a part-time job.

I will never win against myself. If I want something, there is always another part of me of equal size and strength to say why I shouldn't have it. And so sometimes, I talk myself out of it and go nowhere.

My mother used to talk to me this way. I used to tell her things and she would always play devil's advocate. She never -- just listened. A good friend of mine one day pointed out that I do this too. She was quite pissed off at me by the time she blurted it out. I guess I am not a good listener, just like my kids.

But I have to get better, right? I have to at least try to move in that direction even though I don't know what I will be doing next week. This is so hard to do and thus, I end up feeling like everything will fail.

I wonder how I can be a good example to my kids if I constantly worry all the time. My kids have similar problems so I should be particularly mindful about showing them how to be calm. It is just so hard sometimes when your challenges are great and those same challenges seem like they were created just to pick at your most weakest points.

Rise to the occasion? I suppose I can look at this as an opportunity to do just that but I still feel like I am at the barely-keeping-head-afloat stage.

I did notice one thing about this medication despite all that discomfort it causes me. The plain truth is that it really works. This new anti-anxiety medication has pretty much prevented my panicky feelings. I have been able to take a step back and I have been a much more patient and effective mother. I do think that I am probably less productive but maybe that is all I can handle and I should accept that, at least for now.

Taking care of yourself is just so hard... When I first starting taking medication, I never thought I would still be taking it two years later but here I am, just a couple of months shy of a sad two year anniversary of the day when I first went into an ER with chest pains, not knowing that I was having an anxiety attack. Now, I have so many bottles of pills in my cabinet of treatments that failed. I should throw them away.

I wish this new medicine wouldn't produce such awful side effects. They are so bad that they cause its own hindrance to having a good life and being a good mother. So I may be coming to a crossing point: should I choose to live a life in a constant battle to fight constipation and gas or should I choose to live a life where I am sometimes in a panic or should I keep slamming my body with new drugs to see if any of those is the golden ticket?

It is so depressing just to even think about it so I am just taking it day by day. Luckily, the anti-anxiety portion of medication is indeed working when I am not in complete discomfort, I can make some good decisions. So far I have decided to see where this medication takes me. I like how I have been more patient with Logan in the mornings. I love being more patient and I can tell that Logan loves it too. If only patience could come in a bottle.....

One thing that I have decided is that I do not want to keep doing this anymore. Eventually I would like to be off of everything. I think I can do it, even if I have to wait until they go to college! I will do it! I think I will try seeing a new psychiatrist next year. I am waiting until next year because I do not want to pay an insurance deductible twice within 6 months. I hope I can afford a good one. My mental health benefits are the worst. I really need to move on from this and the pills don't seem to be an exit strategy for me. It is only maintenance and because of the side effects, it almost feels like a holding cell.

I need to be free.

photo: My summer miracle. My water-on-the-face-defensive child, Spencer made a monumental achievement by going under the sprinkler. Just a month ago, he was screaming in the bathtub and now he wants only sprinklers at the park. The key is that I have to get completely soaking wet too. The kids in the park do not know why a grown-up is getting wet. I don't think the grown-ups know either. We have made lots of social gains under the sprinklers too. Spencer didn't have a meltdown when someone poured a bucket of water on top of his head! If I did it, I'm sure that he would have. I try not to be too self-conscious doing this therapy but I do feel like a oddball parent but if I didn't get wet, Spencer would not either.

Do-it-Yourself Therapy: Fun but Distracting

2010-07-14T14:07:00.021-04:00

I really hate summer. Sometimes I just can't stand it. I hate the heat. I hate the frequent disturbances of routine and while it is all in my head, I feel a constant need to make sure that the kids are having a blast. After all, it is summer. If they are not having fun, playing outside, or going somewhere for the weekend, then I feel like I am being a very incompetent mother.

Something is clearly wrong with me for disliking summer, right? I think part of it is because for me, summer is a time for reflection. It is the time of the year to sum up what progress has been made and what else is left to do. When I think about the latter, I shift from feeling overwhelmed to feeling like a failure.

This is the time of the year when I realize that I barely spoke to Logan's speech therapist and haven't worked hard enough on the things she told me to do for him. I especially am reminded of this as I listen to Logan trying to tell me what happened in school and he makes very little sense.

This is also the time of the year when I think about all the things Spencer needs to be able to do once he gets to preschool. This list keeps growing. I think about what I should be making for lunch at home now so that he could practice eating things that are easy to send to school. He is still so picky and so slow. He is tactile defensive on his hands so he doesn't like to get his hands too dirty when he eats so that knocks out options too. Don't even get me started on his allergies.....

I also think about how he'll do in storytime since I have been told that this is hard for him in the pre-preschool (for special needs kids) he attends. I also think about if he will hit or push other children because this has recently been happening. Even though he does this mostly out of overstimulation, I still worry.

To add to my summer frustration, I was planning on doing a lot of reading. But when I planned this, I forgot that I am not like other people. I have less time to myself in the summer, not more. So now, I have a stack of books about anxiety to read and I have gotten nowhere. The stack just serves as a reminder of my failure to reach my goals. However, I am still stubborn and won't give up on myself. I still leave them there within my view so that I may one day just buckle down and read the damn books.

It's not all bad. I think I have made progress in two areas and that is (1) I have decided to go back and get acupuncture treatment on a regular basis. My food digestion has improved. That is a relief.

The second, and more important accomplishment is that I have been helping Spencer to have playdates now. We have been getting at least one playdate per week, sometimes two. I do have to thank the summer season for that since there are more opportunities to play during the summer. The playdates are really great and I drop everything on those dates to make them fun and successful. He is not always acting appropriately in a playdate but usually I am lucky enough to have them scheduled while Spencer's therapist is with us at home. Her presence makes a huge difference.

We have also been making progress with Spencer's pretend play as well. Someone once commented on this blog (Thank you Sheila) about the use of puppets and a Little People playground set to improve social skills. Although, I haven't bought those exact things, I did buy a playground set and also used Spencer's Disney character stuffed animals to role play/pretend play with him. It is very interesting to see how he plays with them.

For example, sometimes Mickey Mouse and Minnie Mouse are playing "Dance Party" and whichever doll Spencer is holding will usually end up crashing into the doll that I'm holding once the dancing becomes boisterous. This type of crashing is EXACTLY what he does in real life. Isn't that crazy? I told his therapist that it seems like he could really learn social skills from the doll-role play while somewhat avoiding the personal shame that goes with making mistakes in a real-live playdate. My therapist agreed and looked at me like, "ummmm, yes, that is what this all is...."

And so now my mind is racing!!!! I am thinking of all of these things that I can buy or make to help Spencer to do pretend play and also play with other children when they come over. Some have been successful, some have been real failures. I tried to make a birthday cake using styrofoam but that was too difficult. I ended up just buying one from Amazon and he loved it. However, as far as my do-it-yourself masterpieces, I did make a hammer-me-box by putting an extra layer of cardboard on a diaper box and punching holes in it. Then Spencer and his friends would take the plastic nails from his Home Depot toolbox and hammer them in and take them out. The only downfall is that it is very unsightly. Once my husband crushed it and was about to throw it out while mumbling what a mess our house was. I was of course, livid and told him exactly how he just trashed my work. It's not like the pretend hammering box took ten minutes to make. He didn't apologize but has since left the boxes alone so I decided to let him continue living in our house.

I guess I had to go crazy and make such a box because I am not all that into pretend play. If my kids aren't good at it, then there is a chance that Mom sucks at it too, right? What is so fun about pretending to hammer a nail into nothing? You gotta hammer it into something right? I am more into making real food instead of pretending to cook and taking pretend bites. I also rather have paper dollars and fake coins in my hand when pretending to pay for something instead of just plopping "air money" into someone's hand. Air money doesn't teach math but paper dollars can! This is how I think. I can't let go of academic goals even though this is not where they are lacking.

But I digress again from talking about my summer woes. I think what is upsetting me most about this summer is how little I feel like I am getting done. Maybe that is why I have been going nuts on making therapeutic play things for Spencer. I suppose I just need to organize and plan better. I make To-Do lists that are two pages long which is counterproductive. I am sure that I am getting things done because I am so tired all the time and have so little time to write in this beloved blog of mine. I get so depressed when I don't update within 7 days. If I am this exhausted, surely I must have done something, right?

I have to sympathize with Logan and his reliably aggravating ADHD. He has lots of good ideas. So do I. We both get nothing done with all our good ideas because our good ideas distract us from the basic things we have to do. Reading up on anxiety should be a priority. Exercising on a regular basis is a necessity. Washing bedsheets is a necessity. Removing rotten foods from the fridge is necessary. When these things do not get done it causes trouble and depression. Irregardless, these tasks are pushed aside so that I can make a "hammering box" out of cardboard to make Spencer's playdates more fun and hopefully, just hopefully, these kids and parents will want 2nd and 3rd dates. I am courting small children - plain and simple.

Is this pathetic, desperate, or practical? I think the answer varies by my mood. I think I do these things because I am desperate to feel accomplished in some way. I know that I can make a decent hammering box and that little boys will love it. I know that I can make fake menus so that Spencer's prospective playmates (and even Logan) can play "Eating at a Restaurant." I know kids will love that. I know that if I hyper-organize toy foods in a kitchen, the kids are more apt to play with it. I feel special when I do this but at the same time I feel somewhat ashamed because my projects kind of feel like I appear to be someone with a lot of time on my hands.

You would think that I don't care about that but I really do. Once, I was gluing a pop-up set of Disney Playhouse characters onto thick paper so that Spencer can have yet another role-play set. I was really stressed that morning and needed to run away from my monstrous To-Do list. Thus, I just started cutting and gluing Goofy and Donald Duck into little pop-up figures and said to my son's therapist who was in the same room with me, "I have a billion things to do right now but I am just doing this to escape." It's not like she asked me what I was doing but I was just so embarrassed for making a craft when I could be doing other more "important" things.

The truth is that while I am embarrassed of my pretend play craft bonanza and generally feel defeated on a daily basis, there is something cool about the way my children's challenges make my brain crank out some ideas that makes me proud of myself.

If only improving social skills was as easy as poking holes in a cardboard box. I know I should give myself more credit but I really do have to go beyond the details and educate myself on the roots of their anxiety and poor social skills. I will get rid of that stack of Childhood Anxiety 101 books and really start reading at least one or two of them. I am also going to attempt to meditate again. Hopefully that will bring me back to yoga. I need something to help me with this frustrating heat. Wish me luck!

photo 1 : Spencer is asleep and wiped out from swimming under the hot Florida sun. I never thought he would love Mickey and Minnie mouse so much but his newfound interest has given us a few new avenues to pursue for therapy. I am so grateful.

photo 2: my glorious hammering box. I am proud to show it to other parents and embarrassed at the same time.

Disney with Disabilities? Can it be Done?

2010-07-05T21:12:00.009-04:00

Vacationing with two children is never easy but throw in two servings of anxiety and extra helpings of hyperactivity and suddenly you wonder if you should just stay home and not bother trying to do "normal" things that are out of your reach.

That is how I felt occasionally when I went to DisneyWorld in Florida last week. I have been back for three days and I am still so tired. I feel so terrible that I feel like I am coming down with something but in truth, I know that it is nothing more than exhaustion and possibly medication withdrawal (will explain later).

There are so many things to discuss but maybe I can just focus on one aspect at a time, that is vacationing with a special needs child X 2 = FUN only if you have patience and realistic expectations.

My first plan for the vacation was all about being realistic. After having taken the kids to Sesame Place a month ago, I came to the conclusion that my kids should not be in a theme park for more than 3-4 hours. I knew I would be getting the disability passes for the kids so that line waiting would be cut down and we could get more rides in anyway. I also decided to stay longer than I normally would (whatever that means) and stay for 8 nights so we could take our time enjoying the parks.

I promised myself that I would plan each day, give the kids a lot of YouTube exposure about Disney before we left and when we got there, I would give my kids a checklist of the day's itinerary to reduce anxiety. Most importantly, I promised I would take us home early and relax in the pool by afternoon. Unfortunately, we rarely followed such plans.

What is ideal is all nice and good but then reality comes knocking and all that is ideal is left blatantly hanging on a hook on the wall so that you can't forget how stupid you are. The truth is, I was overwhelmed with planning the trip and the end of the school year brought about a lot of unexpected work that cut into my master vacation planning time. I didn't realize that DisneyWorld was that huge and while I did succeed in exposing them to Disney characters and many of the theme park attractions, I was not successful in figuring everything out before I got there.

I also didn't anticipate how much we needed to split up the kids. They are only three years apart and yet, their tastes, I found were already vastly different. Spencer likes easy spinning rides like Dumbo, the carousel, the tea cup ride. Logan wanted race cars, stunt shows and things to shoot like Buzz Lightyear's Ranger Spin.

Additionally, my husband didn't want to leave the park so early. This is what I mean by being realistic. Even though he agreed with me before we left that leaving the park early and relaxing by the pool in the afternoon should be the plan, he changed his mind like a teenage girl once we got there. I can understand that. The theme parks are feasts for the eyes and all you can do is think about what each attraction has to offer the children (and yourself). That is, unless you are me, with a three year old constantly whining and clinging onto you and challenging the little patience you have left in heat wave temperatures.

While we didn't want to, we really needed to separate the kids on the first day because it was obvious that both of them were losing their patience but to my great disappointment, Disney refused to give my children their own disability pass. Instead they had to share one. YES. This is true!!!! Two employees at the guest relations desk said that only one pass was given per "group" despite the group having more than one guest with a disability.

I explained to them that the kids were of different ages and that they would not enjoy the same attractions and they told me that the pass I was getting was "a really great thing" and that the other child could use the Fastpass option. I won't get into the Fastpass option right now but take my word for it, it is not the same thing as a disability pass. I was really peeved too. It was quite obvious that they were telling me that I was lucky to be getting what I was getting so I should stop my bitching.

I thought that maybe I just ran into two misinformed guest relations personnel but lo and behold, after an exhausting and frustrating first Disney day, I called Disney's customer service (for guests with disabilities) and they confirmed that this was indeed Disney's policy.

HOW STUPID IS THIS?

My kids are only three years apart but imagine if they were 7 years apart, both with disabilities and perhaps even very different disabilities? How could they be made to share the same pass? The whole point is to have them wait less to reduce any ill effect that a long waiting period could cause but waiting is exactly what would happen if they have to wait for each other to have his own thrill.

Of course, it would have been so much easier to just go into the guest relations office as two separate groups but who knew we would have to be stealthy this way? Of course, on the next day, that is exactly what we did. We went to a different Disney theme park and Kai went into the guest relations office without me and Logan and got Spencer his own pass. It was so easy. Like the day prior, no one asked for documentation although we did have it.

After we got the two separate passes, things were much easier by then. There were attractions that only one could really enjoy. To take advantage of the parks as much as they can, they should be allowed to repeat what they like and avoid what they don't like. Because they were of different ages, one child might even want to go to a totally different park. How can they share the same pass then?

Posing as two different families or "groups" is only the first lesson I learned at Disney. I also learned a few more things that I will randomly list below.

1. My kids were unbelievably oblivious to the disability pass, even my six year old had very few comments about it. I was relieved to not have to explain why we had it but it did sadden me. It is also possible that he knows what it was but didn't want to talk about being different as well. Either way, I did consult with his school psychologist about what to say in case our oldest son asked. We came up with "Mommy and Daddy got this pass to help keep your body calm." On a side note, Disney never asked me for documentation. I kind of wished they did. If the employees know it is so easy to get it, won't some of them be suspicious? Then again, what good is a note anyway? Anyone could make one up.

2. Except for the hugely ridiculous rule about only one pass per "group," I still am grateful that these passes exist. However, I do think that we as a family spent an awful lot of money on our vacation and that we just can not budget like other families do because of our special needs. Budgeting usually comes at the cost of the parents' sanity and if you know me, I have very little left to spare. I hope that Disney does know families like mine spend a lot of money in these parks. For example, I tried my very best to make sure they sat in table service restaurants even though they were very expensive because the fast-food places were unbelievably mobbed and many were outdoors so there was no air conditioning. Eating at the table service restaurants as a family were crucial to getting them fed allergy free foods and getting them to be safe while they ate.

3. Avoiding waiting on lines is not just about cutting the wait time. For some kids, it is also about cutting time spent in close quarters with a bunch of strangers aka your basic anxious kids' nightmare. Spencer freaked out when we got to the airport when he saw all the people there. Luckily, I found an attendant to help us check our bags in faster. I am sure we must have gotten evil stares but for those people who gave me the eyes, I just want to tell them that you would not like to have waited next to our family on that terribly long line. Do you want to hear my child crying inconsolably for an hour?

4. Never underestimate the lack of understanding about our children's disability. Because it is not physically visible, even fellow special needs families of guests in wheelchairs have given us a strange look. I remember for one attraction that was a show and not a ride, I asked if my "Guest Assistance Card" could help us with there and the Disney employee said "no," and I proceeded to wait online with everyone else. I only did it because it was moving quickly. However, when I got inside to the special "pre-show" area, I saw that there was a special area blocked off for people with wheelchairs to wait until they could be seated. That section was great for us because it kept us out of the crowd and therefore reduced Spencer's anxiety. However, it was in that same waiting area that a woman with a child jn a wheelchair ushered her family to come closer to her saying something like, "Wheelchairs should get in first." She obviously thought that I was hawking that spot "illegally." I casually explained to her why I was there. I know I didn't have to but I just had to.

Additionally, I stumbled upon DisneyWorld disability webpages after our trip and found that at least in these pages, they don't seem to include neurological disability as a disability for which they make accommodations but rather, all that they listed were for things for the wheelchair-bound, the visually-impaired and the hearing-impaired. Uh, has anyone told them about the new autism statistics yet? Maybe they missed that memo.

5. I should have realized that splitting up in the park would not be enough of a measure to prevent frustration. It is also just as important to be able to leave the park at a different time from the rest of your group. For example, the difference in Spencer's and Logan's age made it so that Logan could not only attend attractions for older kids but also, he could stay at the park a lot longer. Spencer on the other hand, lost interest in the park very quickly. He was ready to go home after just a couple of hours. I wished very much that I could have done that, instead, I missed two days at the theme park because Spencer and I couldn't handle another full half day at the park. He was invariably clingy to me when distressed and that made my life harder too. On one day, I had to carry him around everywhere because he hates strollers but he was too upset to walk around holding my hand. He either wanted to be left alone to run freely or be carried around. I decided that I rather have a backache than to lose him.

Note to self: If there is a next time, I will stay in a resort that connects to the Disney monorail so that I can leave the park in the middle of the day quickly and come back easily if I want. It might be more expensive but what else is new about vacationing with disabilities.

6. Why am I writing this last? It should have been first. The most important thing I should have done first was figure out what would be MY triggers and figure out how to avoid them. I barely gave this any thought. If I did think about this first then I would have never booked a vacation at the end of June in Florida where it is even more humid and hot than it is in New York. I lose my temper so quickly in this type of weather. For this trip, I did not lose my temper but rather, I internalized it all and so I felt extremely drained and frustrated. I also took benzodiapenes to help keep me calm. These usually have the effect of making me sleepy but nothing about that trip could make you sleepy so I used them but I had never used them so frequently. I was still using them within the doctor's guidelines but I realized that the side effect or possibly a withdrawal symptom was extreme fatigue. I woke up so tired everyday. I should have planned to work out my anxiety better.

7. We met friends from Logan's school down in Orlando and while we didn't go to the parks together, we did bump into each other at one of the rides and we also planned to have dinner together. That was a really great part of the trip and I hope I can do more such coordinating in the future. It was nice to be vacationing with a "sister." We shared info about certain attractions as well as vented via text messages when our kids drove us nuts. Kai was annoyed with all my texting but I loved to be able to talk to her during this time. The kids also liked being around familiar faces and so my next vacation, I am going to try to go where I can be with other families who have children that make my children feel good.

8. There are so many new experiences that made our kids' eyes grow wide with delight however, all of this was possible because I tried my best to make sure that they had as many comforts from home as they possibly could. My hotel room was a suite with a kitchen and two bedrooms. I had to do my own laundry and ate in more but that was more comfortable for the kids in the long run. Spencer went to sleep just as he usually did in our own home and that floored me because he is scared of soooo many things. Logan was just so happy to see his friends from school, even for the short time he saw them. A good dose of familiar given frequently throughout the day is therapeutic for us all even if it meant carrying around a favorite toy while they are in one of the biggest theme parks in the world. For me, I wish I had figured out where was the closest Korean restaurant and planned to eat there at least once. I think that would have been a definite mood changer.

9. Guilt. I tried very much not to have any of that. It was the key to having a good time and believe me, warding off any guilty feelings was a daily battle fought more than once a day. There were so many times I said, "I should have done this...." I hope to go back to Disney in the future and do it better next time around. Hopefully, I will find a like-minded family to travel with during a time when it is not as humid and hopefully I will have more money to spend so that I can stay very close to the parks. I also hope that Disney will change their rules for families traveling with more than one child with special needs. When I recover from my energy drain, that will be high on my priority list. They really need to change that rule.

10. Lastly, I have to remember to write a list of my kids' accomplishments and remind them of it as much as possible. Logan did great in facing his fears of scary things on some of the spookiest rides in the parks. He also rode a little mini-roller coaster and I think he was proud of himself for that. Additionally, his school shared with me a list of worries that Logan had about his vacation and the summer and I didn't know it but I think he didn't know how to process feeling worried and yet excited about the same thing; our vacation. It was so good to have a talk with him about it before leaving. I assured him that he would not be made to go on anything he didn't want to ride.

Spencer also surprised me because he went down a small slide in the "water park"in our hotel. He was really scared at first but he soon learned to enjoy it. He also challenged himself with touching the sprinklers. This triumph was huge for me to just witness. Taking him out of his element also helped me to better understand his fears and how he reacts to them. I also found out that he likes to perform which really surprised me because I know that Logan has stagefright but Spencer wanted to sing karaoke at an event in our hotel. I didn't let him only because of the time but I don't think I would have figured this out had we not left home.

All in all, I am happy we went but am even happier that summer school starts tomorrow. I am dreading the next break when summer school ends and I have three weeks before the fall semester starts. What will I do then?

Photo: Our little one's face is blurry here but I like this picture because they are leaving their last day at Disney with big smiles and lots of laughter. These bubble blowers which you might find positioned somewhere in the Magic Kingdom are the best. It is such an unexpected treat for the kids.

Play Therapy

2010-06-18T10:07:00.006-04:00

That term sounds really sexy to me. "Sexy" is a term that some publicists use about a good story worth pitching to a journalist. Who thought of putting those two words together? Who thought of this idea in the first place? I don't know and I guess I don't really care but all I know is that my kids really need it.

I first heard about it when Logan was starting special needs preschool. The school system used the term "play counseling" or just "counseling," but it seems to me that, for any child under 4, counseling is therapy through play.

My kids seem to benefit from play therapy. I only wish we had more time to do as much play therapy as possible especially now that I see that anxiety is really bothering them. For the little one, he seemed to have social anxiety. He does like being around other children but only if it is a very small group like say three. It can be a larger group if the group meets daily. Otherwise things are hard for him. He easily shies away when more kids show up at a park.

How am I supposed to go to Disney World? Even with the disability pass to skip lines, we still have the crowds to deal with. This is why we have promised ourselves to stay in the park no more than four hours a day. I hope we can keep to our plan.

Back to play therapy... I have been going nuts about it because I am determined to deal with Spencer's anxiety while he is still little (3). I even bought an Asian American family doll set for his therapist to use during her sessions with him. (YES, THERE IS ONE and they are not wearing kimonos- because Duh, Asian Americans don't wear kimonos everyday!) I have also bought more games to help him do interactive game playing with friends and be more comfortable around them.

I think it can definitely help him but we are still testing things out and I have been very avid about making playdates with just about anyone I can. I practically wear a sign around my neck saying, "Please come over and play with my son." Hopefully I can help him make some friends this way. I need to be very proactive because in September, he will be going to school outside of our neighborhood and so seeing his classmates afterschool on weekdays will be nearly impossible. Hopefully we can make more dates. I wouldn't mind if he had three playdates a week. He really needs the one on one interaction as much as possible if he is ever going to make it in the playground.

I also try to play with Spencer when we go to the park. In our park, the jungle gym and slides are on top of a large sandbox. Last year, this wasn't really an issue for him but this year it is. He hates the sand. He has regressed with tactile sensitivity which is really sad because we had really made a lot of progress last year. It takes a while to get him used to the sandbox and I usually have to drag him there and cheerfully ignore his protests. Once there, he might be able to play on the sand but playing with the sand is doubly hard for him.

I found a sand mold set made of numbers on the internet recently and thought I had discovered gold since he is obsessed with numbers. As soon as it came in the mail, I took it out and took out my stolen sand from the park and started to play with it with Spencer. He was squirmish but the numbers held him attention and desire. However, when I took him to the park to play with it, he started to do okay and there was even a prospective same-age friend that wanted to play with him as well.

Those first few minutes were great. The two of them molded numbers out of sand and they were happy because I sat there and helped them and said things like, "Oh, you made 15," and for Spencer, because he is so crazy about math, I said, "Oh, look, you made 100." You would think that I struck it rich and became "Therapy Mom of the Year" but then something happened and everything was ruined.

The Number Sand Molds were way too interesting. Kids as old as 7 would come up to us and take the molds and make more numbers. Younger kids did too. The little ones would grab things and walk away and in my park, sharing is really encouraged especially if you have plenty of number molds, but I really wanted to just say out loud, "Please don't take those away. It only costs 10 dollars but I have to spend 25 dollars from that store to get free shipping. Also, Spencer will have a fit if he lost the two "zero" molds to make his favorite "100" number." And I really wanted to tell the other older kids, "Please go away, my son is not ready for such a big crowd. We just want one kid with him and now he's gone because you scared him off."

Who would understand me if I said this? Do I have to tell everyone about my kid's psychological problems to get a little bit of space. It's an open park space so it's not like I can take a few square feet and section it off for my own therapy session and only let "select" children in. By the way, while I have talked about my kids' special needs, I have never told people to not play with us but now because of that, it is now so hard to do therapeutic play with my son in the park.

Another problem is that children are attracted to me. While other parents might get on the sand occasionally to play with their kid, I sit on the sand with my son because if I don't, he may likely leave. So I sit with him. I play with him. I talk about how great he was at packing the sand in the mold. I make "birthday cakes" out of sand for him. We sing and pretend to blow out the candles. The good part about this besides helping him be comfortable is that other kids like to see this and start to come by and try to play with me and by default with Spencer too. However, sometimes, too many of them come and they try to talk and play with me as if I was their teacher. At times, Spencer has gotten overwhelmed and has left me and I find myself stuck playing with other people's children. It's a pitiful sight.

This also happens with bubble-blowing in the park. He loves it but too many kids crowd around him and his bubble set and then he just ends up wanting to leave.

No more bubbles for us. I only bring them to a park where I don't know the kids. There is really no way around it. It just attracts too much attention. Other parents probably don't bring them to the park for the same reason I do. Because other people's kids end up using all your bubble stuff. Everyone but your kid. Bubbles will only have to be for private backyards for now.

Additionally,while I will continue to bring the number sand molds to my park, I will only bring a few and I will have be more politefully stingy and keep them very close to me. I am sure that I might seem odd to people but once parents and babysitters see the number molds, hopefully they will understand that my sand molds are not like those that frequently found and easily bought in a store. Hopefully, I won't look like a crazy person but I'm sure I already do.

I am also going to lower my voice and attract less attention when playing with Spencer. This is very hard for me. I am usually loud especially when I am being a Therapy Mom. I clap too loud. I say "Wow" way too often. These things are too attractive for young children. They want to praise too so they come sit next to me and show me their creations. I will have to tone it down. Hopefully that will attract just a couple of kids to play with Spencer and not a mob.

I am also going to tone down the play therapy thing altogether. I am constantly spying for playdates and thinking of ways for Spencer to play interactively with another child. It is somewhat consuming and I should really give it a rest. In the past week, I have spent so much money on toys and even organizing supplies to make it easier for all of us to find different games to play with Spencer.

I guess I am overdoing it partially because I am really afraid. I know it is so unhealthy but I want to avoid medication in the future if it is possible. I can't stand to see him idle in the park and not play functionally while he's there. I don't want him to become too obsessive about order and routine because he is so used to a structured life. I want him to be happy to be with people, young and old, boy or girl, small groups and big groups. People are messy and lovely and give you joy and give you pain. Even though he shies away from it, the times that he hasn't and has done well with other children, I see great happiness in his face. It is worth the effort. I just have to not let it drive me crazy in the process.

Photo: We took the boys to the Staten Island Children's Museum where there is a quiet room for building blocks and playing kitchen. I kept telling Logan to build a city, a skill I know he can do very well but he just wouldn't do it until I sat down and did it with him. Whatever building I did was no match to his once he started to join in on the play. He's got so much potential, I guess I just have to drag him into things to get started. Sometimes I watch parents go to a museum or park with a book in hand and try their hand at reading while they take sneak peeks at their child playing on his own. I wonder if I will ever see this day. For now, I am trying very hard to fill Lucy Miller's prescription of playing with your child as much as he receives therapy from a professional. I understand her point now more than ever.

In case you are interested, here are some cool things that I found for helping my three year old learn to play with others.

1. Doctor Kit
2. Painting
3. Zingo (but played not competitively)
4. Kitchen with foods. It's best to have tables and chairs and utensils too and if all of the foods and utensils are neatly organized, then Spencer becomes more creative. (I'm thinking of creating a menu for him to make a pretend restaurant.)
5. Making instant pudding. Giving two whisks and letting them stir together and bump each other and then hopefully they'll eat it together.
6. Don't Break the Ice (a game) Spencer's therapist, the genius, decided to number the ice blocks and this helped Spencer follow through the game.
7. I Never Forget a Face (matching game, I love anything that helps him look at children's faces intently)
8. Preschool Lotto Game (we just got this and haven't started but it looks good. Very good quality, good graphics. the eeBoo products seem very well made.)
9. Birthday party. I bought some stryofoam blocks to make a birthday cake but I have this feeling I will fail at this miserably. I should have just bought it.
10. Matching Game. This is available pretty much everywhere.
11. Balloon Toss. It took a while but Spencer finally understood that the object of the game was to toss it up in the air and not to let it fall on the ground.
12. Bowling. We joined www.kidsbowlfree.com and now we just pay for shoe rental to pay for the kids' bowling. We found that Spencer loves bowling and that Logan is quite the sore loser. We can work on that through bowling.
13. Construction Set. I found some low cost tool belts and construction vests from Michaels in the sale bin. They also had foam construction hats ($2.99) where you can stick foam stickers on them. I am hoping this might entice Spencer to put on a foam hat to pretend to be a construction worker because he hates hats. They even had the "caution-do not cross" tape which I just had to buy.

If you have any ideas for a three and six year old, please feel free to put them in the comment list or send me an email. I am absolutely obsessed with finding good things for him.

New Villains to Vanquish

2010-06-10T12:13:00.002-04:00

There is a reason for this two week silence on my blog. The first is simple, I had and actually still have a really horrible cold. It is the kind of cold that makes your abdomen feel like you did 200 sit ups because you are coughing so hard.

The other is not so simple and unfortunately will not go away like a cold. That is, anxiety. It's a dirty word in my house now. If I could, I would take it, stomp on it, chop it up until little tiny pieces and then burn it.

Of all the words that make me and my kids fall into "psychologically different" category, this word or really this aspect of our lives may actually be the most debilitating, more than hyperactivity, impulsivity, autism, ADHD, sensory processing disorder and so forth. I am still trying to figure out why but I think that part of it is because I think it is somewhat stealthy in nature. The word itself is accepted in society. In a sense, you are allowed to have some and not do anything about it.

When you say that someone is anxious, you don't necessarily think that person has an actual disorder but "disorder" or not, the level of anxiety in this house stops us from doing what we want to do and being who we want to be.

In my quest of finding calm, I have learned that the medication that treats anxiety can cause nasty side effects. I have also learned that if you don't recognize and deal with it effectively and treat the other things like SPD and ADHD then it may be like collecting water with holes in your buckets. The bucket will hold the water but still you have to move fast because eventually you will lose all the water and have an empty bucket again.

It took me 38 years to figure out that I have been suffering from anxiety since I was little. As I watch my children grow, I see myself in them. I see their irrational fears and remember the ones that I had that weren't the exactly same but equally nonsensical. And while I do know that all children have fears, having big fears or fears that are uncommon along with other behavioral issues makes for a pretty difficult time to do something like say... learning and having fun with other people.

Three weeks ago, I gave up my anti-anxiety medication because it was making me fat and causing major gastrointestinal problems (hint: starts with "c" and ends with "n"). My plan was to just brave it out and do yoga.

While I love yoga, I need to kind of laugh at myself because when I start to get busy and stressed, the last thing I think about doing is yoga. It is so much easier to just pop a pill.

So I had to make adjustments to my plan by using another type of medication and it helps somewhat although it doesn't beat the anti-anxiety medication. However, I don't miss those meds enough to go back on them. I really don't think I will ever start using them again unless I have another huge panic attack like the one that landed me in the ER and sparked this blog into existence.

These past few weeks, I have also noticed that anxiety is not only making me suffer but also bothering my two children in a big big way. For the little one, it is very obvious and it really unnerves me. I feel so bad for him and yet his anxieties or fears or whatever you call them have at times, totally wreak havoc on all of us. It is very stressful.

For example, like many little kids, he wants to ring the doorbell when we go to someone's house but unlike other kids, he will talk about it for five minutes continuously until he gets to ring the bell. Even if we reassure him that he will get to ring the bell, still, he can not stop talking about it until the moment he pushes that button.

Oh, and just to make things easier for me, just throw in his big brother to the mix. Logan who knows that Spencer is obsessed with the doorbell, can not resist the urge to taunt him and so he'll walk in front of Spencer on the way to the door, making it seem like he will ring the bell first thereby further fueling his little brother's anxiety. Sometimes I wonder if the personality mix between the two is healthy or harmful. Is Logan's tendency to "push people's buttons" good for
Spencer because it challenges Spencer's fears head on or does it push those anxieties to dig deeper into his psyche?

When I was little, my brother knew that I was DEATHLY afraid of vampires. We were latch key kids too so sometimes, when my parents weren't home, he would take a blanket and cloak himself with it and pretend to be a vampire. To his delight at each time, without missing a beat, I would totally lose it.

I think Spencer finds it so hard to relax when he's feeling this tense. He does not have a security blanket like Logan does. I think I am his blankie and since he's three now, I think it is fair to say that I won't be able to give that job to a real blankie or stuffed animal. Believe me, I have tried. I'm still trying. I wonder if that is why he is so attached to me. He asks me for a hug about fifty times a day.

I have noticed some obsessive compulsive behaviors in our little guy as well. He closes the door often. Sometimes, he closes drawers if they are open even just slightly. I noticed that at night, he wants his glass of water in the same exact spot near his bed. It's as if there was an imaginary coaster there that only he can see. On the night that I noticed this habit, I decided to secretly take it away and within five minutes after tucking him in and closing the door behind me, I heard sobbing from his room because his water cup was missing.

I explained to him that I was thirsty too so I needed to take the water and that if he was thirsty he could take a sip and I would then take it with me back out of the room. He accepted that but as for the laundry machine, his latest and greatest fear, there is no way of reasoning with him.

I couldn't believe how bad his fear was but starting two months ago, he started crying whenever we went into the laundry room in my apartment building. I know that sometimes things upset him and I do not know why so I just keep talking to him and say that nothing is scary. Recently, during one of my laundry days, I went to him to hold him for a second and I was shocked. He was shaking. You can't see it with your eyes but if you felt him you would know. At this point, what can you say to make him stop the shaking? I still didn't know what exactly about the laundry room was bothering him.

That same day that I noticed the shaking, I found out that it was the big jumbo washer that was causing the trouble because another tenant had turned it on after we left the room. Spencer was so shocked to see it on when we returned to put our clothes in the dryer. He acted like it was a bloody monster. I had never heard him scream like that. I tried to remain calm for him but it pained me to see him so disturbed. I asked myself, "Am I doing the right thing? Am I pushing him too hard? What is the quickest and most gentle way of getting rid of this fear?"

About those fears and getting rid of them.... I had even more questions. Would getting rid of one help you get rid of the others you have in your life concurrently? Theoretically yes, right? I actually have no idea. I am planning on having a larger chat with his therapists to figure things out.

I know that I have done a good amount of reading on things like ADHD and Sensory Processing Disorder, but I have barely done any reading on anxiety. I am realizing now that I know so little about it. I always thought that my kids didn't have anxiety to a clinical extent but now I am really questioning that, even with Logan.

My poor Logan. I am trying to think back to when he was three years old, the same age Spencer is now. At three years of age, Logan's issues could no longer be passed off as just being a "real boy" or "really energetic," and so we had him evaluated. We were so surprised to see that his evaluations reported many many delays.

As he grew up, I only suspected ADHD, SPD, and Oppositional Defiant Disorder (ODD) for him but never anxiety. Logan isn't afraid of anything, I thought. Logan doesn't complain of tummyaches. Logan likes people even though he doesn't quite know how to play nicely with them sometimes.

However, Logan has been scared of any movie having scary-type suspense scenes or characters with scary faces on animated creatures like a shark or a tiger. He was even scared of watching Finding Nemo. I have also noticed that he avoids sitting in the inside of a booth sometimes at a diner or sitting in a place from which he can't easily extricate himself. Also, another clue about possible anxiety of Logan's part are his favorite phrases: "What's next?" and, "What comes after that?"

He does complain of tummyaches but I think I always know what the root of them are and they aren't anxiety related. Basically, Logan's anxiety, if it is indeed anxiety because it is still a question mark right now may not be that huge but big enough to cause poor behavior. Even while he is on stimulant medication, if he is in a non-structured situation (like the weekends at home), he sometimes appears to have not taken any medication at all.

Obviously by now it is clear that anxiety is huge in my house but now the biggest question is... Am I the best person to help them with this? I suppose I could be because I may know or could take a good guess at how that feel. The bad part is that I am anxious too and so at times, I lose the patience and calm that I need to help my children effectively when they start to freak out.

This is what I noticed after I stopped taking my anti-anxiety medication. It is probably just a coincidence that my children's anxieties seemed to have expanded or become more noticeable just as I pass this phase of my life. But I do have some hope because I do believe anxiety is treatable. Now, on top of my list of things to research 'til I drop is anxiety. There is so much to do. It just never stops.

Photo: Spencer has not wanted to go to sleep in his own bed at night for a while. He used to be so good about it too. These days, he is begging to sleep with me in my room. I usually say"no" but I really had to on some of the days when I was very sick because I just couldn't listen to him crying anymore. One day, he went to bed and we didn't hear any whining nor did we have to chase him after he came running out of his room. Kai thought it was strange too and when he went to check on him, he saw that Spencer had crawled into his brother's bed (they share a room) and fell asleep there. Right now, the battle seems to have stopped because we have negotiated that if we leave the door open a little, he would promise to stay in bed and go to sleep. So far so good.

Caution Beware: "Winging It" Can Ruin Your Vacation (or Not)

2010-05-26T10:38:00.003-04:00

Recently, I went to Sesame Place for the first time this season. I had gone last year but did not write about it in the blog. I think it was just too traumatic for me.

To make a long story short, last year, while visiting my brother in Philadelphia, we took the kids to the amusement park as a last minute decision. I let my brother lead the way and he suggested that I not bother with getting special "I'm-disabled-so-let-me-cut-the-line" wristbands because it wouldn't be crowded. I didn't have time to call Sesame Place to see what was required and so we just sort of winged it but when we got there, the lines were huge. There was even a line to park the car.

Note to self: Do not ever wing things - not with YOUR kids. Never Never Never, okay? And if you must, please make sure there is someone to catch you if you fall.

This was the problem with the last trip. There was no one to help me. Kai had Logan but Spencer was the extremely difficult one that day. He wouldn't go on any rides except the carousel. He wouldn't even play in the playground where there was no line and no kids! He cried and cried throughout the day. Also, it was disgustingly hot and humid and I abhor humidity 10 times more than the average person does. Additionally, I was with another family and we only came in one car so I couldn't even just leave. Big Mistake. Huge!

You'd think I'd be older and wiser now but no, not really. What I learned from my last trip out was that I must prepare the kids in advance for things to come. For us, vacations require extra prep work so that it won't turn out disastrous.

I thought that I should also get those wristbands too. I always felt like we didn't deserve them but throughout the past year, Spencer has given me so many little safety scares, a disability pass of any kind seems to put my mind more at ease. My friend Kim tells me that "easier is always better" and she is someone who works very very hard for and on her children to help them grow up happy and strong.

Fast forward to this Spring and I am preparing to go to Sesame Place again. Unfortunately, I have been very busy this month and so I barely prepared Spencer to go, thus not fulfilling my grandmaster plan of preventing the kind of anxiety I saw last year. All I did was show some YouTube videos of a couple of the rides right before we got into the car.

We were lucky. It was a very cloudy day and the park was not crowded at all. We got our special wristbands and we parked in the handicapped parking spot and things were feeling easy. We saw the carousel and Spencer said that we didn't want to ride it but he didn't have much of a chance to complain because I just walked right in without waiting on line. We rode it three times in a row and he finally started to feel a bit at ease.

We moved onto other rides and I tried to do the same formula then. Ride the ride three times in a row and by the third time, he'll start to enjoy himself. However, at this ride, the line seemed longer and our cutting the line seemed quite noticeable. I felt uneasy about it but what could I do. This is the way that my son will enjoy this park. We must pick just a few rides and just ride them several times. We can not roam around the park and just pick what grabs our eye. Additionally based on each child's sensory needs, perhaps even 50 percent of the park's attraction would be useless to them. I think I can estimate that Spencer can only enjoy about 25% percent of that park.

Nevertheless, to the staff and other park-goers, we may have looked like we were abusing our privilege by camping out at a ride for three turns but that is the only way my child will come to enjoy this park. I have a feeling that some of these workers do not know this so I have decided to write to the park's customer service folks and let them know.

I tried very hard not to meet anyone's eyes when I made use of our magic wristbands. I imagined that no one knew why we were there. It is not as if Spencer is in a wheelchair. I think maybe next time, I will have him wear a shirt that sports the logo of a national autism organization. Perhaps that might give others an idea why I cut the line even though Spencer is not diagnosed with autism. I am sure that my cutting the line aroused at least a bit of ill will. I did hear someone telling their child that "you have to wait on line just like everyone else," and I wondered if that was directed towards me.

By Spencer's third ride, it was apparent that he thought riding was a good experience so I took him to a spinning teacup ride and I had him wait on line for the first time that day. It was then that I figured out the best reason for the wristbands. That is, the wristbands are for the caregiver as much as they are for the child. I had trouble keeping Spencer on the line and keeping his body safe as he waited. Sure, he waited on line just like everybody else but I was quickly losing my patience and began to understand why I hated my last experience there. Keeping him "in line" while waiting on line is so draining. I think I'm entitled to not have amusement parks kill me while I'm trying to show my kid a good time.

I would have tried to go on more rides but clouds in the sky did fulfill their threat to rain on our afternoon. I was sort of happy to leave. We had been in the park for almost three hours and ask any therapist of ours and they will tell you that our kids really can't handle much more than that anyway. Wristbands or not, amusement parks are an expensive proposition for us. We will never soak up the park like other families do. I think Sesame Place does give discounted single-day admission to children with special needs but not to their companions.

Everyone thinks that Sesame Place will be a dry run for us to go to Disney. Those words were ever more clear after our three hour visit to Sesame Place. To make our vacation reach our goals of having fun (all of us - not just the kids) I think we have to do the following things:

1. Pack food to avoid long cafeteria lines. Waiting is more stressful to the parent than it is for the child. However, I will not pack too much water. I will cough up the money for that because that is just too heavy and you never wait on line for water anyway. Same goes for treats. I am also going to look into sit-down restaurants as an alternative to packing lunch for some days. Cafeterias are very noisy and overstimulating.

2. Do YouTube prep as much as possible but save them all in a playlist in advance (more homework for me) so that they can do continuous watching of my hand-picked selection of videos that best represents what they will be doing. If you have a DisneyWorld YouTube video that could help us, please email me the link!!!! please, please!!!!

3. Print out pictures of rides and make a pictorial checklist/itinerary of where to go on each day. This must be completed before we leave and must reviewed consistently prior to leaving. Include Logan in making our itineraries.

4. Print out pictures of the rooms at the hotel. Print out pictures of the hotel. This could be part of the checklist/itinerary too so that we can signify an end to the day at the park.

5. Get a 7-day pass to Disney. The increase in price per day is so small after the third day at Disney. It is better to pay more and do less per day at each park then do a lot at a park for the whole day. I think this is the best way to make good memories for us.

6. Do as much research as possible. Avoid wandering. This will be extremely hard for my easily distracted brain but I will resist the temptation as much as possible. I will however, wander a place only if we've been there before and the kids feel at ease after seeing familiar sights.

7. For Spencer the scared one, I think riding rides once to three times will be good for him. If he tells me that he wants to go but is not wailing then I will try to stay on the rides for another round. If he is happy then that has to mean that I can go and try another ride. I really hope I can follow through on that.

I am lucky this year that Logan is going to a great school because one of his classmates is going to stay at the same hotel that I will stay in (around the same time). I am hoping that they will be able to play independently together and free me from playmate duty for a little bit.

Oh how I wish I could take my teen babysitter with me. Now that would be a real vacation. This is more of a family trip. I still have to cook and do laundry. We chose a place with a kitchen because of Spencer's allergies. I think we'll save money this way as well but this vacation has been hard to accept because we have been paying extra for everything to make this vacation work for us including non-stop flights, an extra bedroom, a kitchen, and even an extended stay so that they can have extra time to practice having a good time. Their "extra" needs spell "extra" expenses but hopefully I will get my act together and fulfill the above checklist. I can't believe how much work I am going to have to do but at this point, I know that if I don't, I will no doubt be adding extra alcohol to my long list of "extra" expenses.

Photo: Like I said before, I will never ever "wing it" again unless I have help. This past weekend, we made a decision to go to the Adventure Aquarium in Camden, New Jersey. This place was amazing. You could actually touch the starfish, stingrays, and jellyfish too (safely). The boys didn't really touch it that much but it was a thrill enough for them to watch us touch it. I told my brother (the pusher to new heights) that the boys weren't good "lookers" but he still kept pushing me to go.

He even bought tickets to a 4-D show which I was also hesitant to do - can you say "auditory overstimulation?" (Spencer is pictured here with his 4-D glasses that my brother pilfered). Logan covered his ears for the first quarter of the show but both of them ended up enjoying it. Hooray, I was so glad to be wrong! I guess the lesson learned is that winging things with special needs kids is okay but only if you have some cushion to catch them if they fall and oh, that cushion can not be you. Then who is going to catch you?

Picture 2: My beloved disability parking permit, valid only in the greatest city in the world. Sesame Place accepted it though. I really fought hard for this little placard. They first rejected Spencer's application but I appealed it. I questioned myself many times on whether or not we deserved one but I felt like I was Spencer's wheelchair even though he is not physically disabled. Without me or a trained grown-up, he can not go to many places safely. If your state or city offers this permit to children with disabilities, please consider getting it if you might need it. It could mean less anger and frustration in parking lots and sidewalks and most importantly, more safe travels and more travels at that!

Happiness Doesn't Come in Pills

2010-05-17T13:12:00.004-04:00

The other day, I called my acupuncturist with great embarrassment and asked her. "Uh, can you help me lose weight with acupuncture?"

I felt like I was drawing a capital L on my forehead (for "Loser") but I had to ask. I have been getting quite desperate.

Why do I need to get help this way? Why can't I just stop eating?

Honestly, sometimes, I still don't feel like I am one that overeats constantly but clearly something is wrong with me. For the past year, I have been doing things like yoga and dieting and still the pounds just stay on. I couldn't figure out why. One of my friends suggested that I go for a run and I know she is right but at the same time, there is something else going on.

My acupuncturist and I talked for a while and then she thought that I still might have underlying thyroid issues even though my tests came back negative. She also thought that the weight gain or inability to lose weight was a side effect of my medication.

It must be the anti-anxiety pills, I thought. That is what I've been on the longest. However, even as I experience appetite loss as a welcome result of going back to ADHD stimulant meds, I was still not losing weight.

Before I got pregnant with Spencer, I was very overweight and experiencing what my endocrinologist called "reactive hypoglycemia" where I would just crash from any of the carbs I ate. He told me to cut out the carbs and I was so surprised to hear that. I had always thought those no-carb diets were a hoax but he said I really didn't need carbs and an expert nutritionist that I consulted agreed that for me, I could skip it. The next thing you know... I lost 20 pounds in about 6-8 months.

I was really motivated to stay on this diet because in my mind, it wasn't a diet to lose weight. Losing weight was just a bonus. What I was really trying to do was avoid the sugar crashes because by then, they had been coming on a daily basis and when I crashed, I felt like I was shaking from the core of my body. I would even get a headache sometimes or become extremely tired. I basically couldn't work until I ate a piece of bread.

After a while, I allowed more carbs into my diet but I still limited it and it was easy to do because I was working so I bought 2 out of 3 daily meals outside of the house.

Fast forward to my life today as I try a no-carb diet. Starchy foods are everywhere in my house and I am now finding it hard to digest whole meats like chicken, beef, and pork but can eat something like a hot dog or eggs. Thus, going no-carb is even harder. My anti-anxiety pills cause me constipation and then I have to drink very caloric prune juice which is the only thing that seems to help regulate me.

Basically, I am a complete mess.

I think my doctor also said that my anti-anxiety pills might have also been the cause for a slightly elevated HDL cholesterol reading. I know I am getting older but this was the first that I had an elevated reading.

All I know is that something is wrong and now that I'm on the stimulants that does help with anxiety somewhat, I have decided to get off the anti-anxiety medication once and for all. I wondered when I would ever get rid of it. I could see no end to my symptoms. I always thought that my life would eventually get easier years later and then I could give it up but I don't think I can wait anymore. I think I am going to just make it happen for me somehow.

The good news is that I still like to do yoga and I know that calms me. I still allow myself to drink socially and to have a glass of wine now and then. Additionally, as my acupuncturist said, she may be able to help my body metabolize foods better and help me to lose weight but I will have the most success if I can improve my emotional connection to food. She said that for most of her patients looking for weight loss help, they can not be successful unless they work on this part as well.

I knew what she was saying when she said it but it is still so hard to hear and accept it. I do not know how long it has been or why this is but I am going to have to figure this out if I am ever going to feel good about my weight. Coincidentally, I watched a recorded episode of Oprah the very next day where a woman named Geneen Roth talked about her book Women, Food, and God also talked about women and the emotional reasons for overeating. I figure that this was some sort of sign to me to make some changes. It is not everyday where the words" emotional connection to food" are mentioned within a day apart from each other and coincidentally I am seeking to lose weight at that time as well.

To be quite honest, I haven't gone on a very strict diet in a long long time. However, as Oprah now swears off dieting, I think I am going to join her. As I can now see, happiness is not a number on a scale and stability may come in a bottle of tiny white pills but not without cost. In essence, I am realizing that the bottle of pills almost cause as many problems as they fix. I don't want to have anxiety attacks but I also can no longer stand being this weight. I will have to find other ways to continue my life with all the challenges that are imposed on me as well as the challenges that I impose upon myself.

To start, I am getting a copy of Women, Food, and God and am going to begin a yoga routine and hopefully start incorporating a cardio regimen after I feel that the yoga is making an impact on my anxiety. I am also going to go to my acupuncturist again and she will help me detox and work on any thyroid imbalance that I might have. I am still going to continue my ADHD meds because they really help me get moving and getting a move on helps me to avoid eating when I'm not hungry.

Additionally, while I am going to learn from her book, Geneen Roth's seven guidelines for eating seemed so great that I thought I'd write it down here in case you were interested:

Eat when you are hungry.
Eat when sitting down in a calm environment. This does not include the car.
Eat without distractions. This includes radio, television, newspapers, book, intense anxiety-producing conversations and music
Eat what your body wants.
Eat until you are satisfied.
Eat (with the intention of being) in full view of others.
Eat with enjoyment, gusto, and pleasure.

I got to practice these new rules yesterday and it was wonderful. In the morning, despite having appetite-reducing stimulants in my body, I was still hungry for breakfast and ate just a small plate of my favorite dim sum: Lao-Churn (minced beef steamed in a long rice noodle sheet). It was different from what I usually eat and more importantly, it was a perfect portion. After drinking coffee and lots of water, I had a Big Mac for lunch but I didn't finish it nor ate any fries. It was DELICIOUS and felt no guilt. I only eat this maybe four times a year so it's no big deal to me.

For dinner, I went out with two friends who were visiting New York for a special roundtable discussion, you might know them, Kay Marner of ADDitude Magazine's Parenting Blog and Penny Williams a.k.a. ADHDMomma. We made plans to go out for dinner weeks earlier and obviously earlier than my new resolve to eat better. With my new intention to eat with pleasure, I did something that I never do and ordered three appetizers instead of an appetizer and an entree like I would usually do when I am eating a big dinner out with friends. I finished my appetizers and a had just a little room for dessert.

After dinner came the real dessert, we walked and walked through the city in the most pleasant of evening weathers. It was cool but not cold and while my feet really hurt, I really enjoyed the rare opportunity of showing my hometown to my favorite blogging buddies while walking off the huge dinner I ate.

I wish I could go for a walk every night after dinner but it is so hard to do because I have to get the kids to bed and by the time they are in bed, it is too late to go out for a walk. I guess I don't have all the answers and I must accept that this is a process. I do feel like I am getting somewhere though. I stepped on the scale and haven't gained any weight even though I have eaten more this past weekend than I did in the past week! It must the drugs. That is the only change I've made and so far it looks like it was a good one. Wish me luck!

Photo 1 and 2: This is Spencer and his friend Christian blowing bubbles together at my house. It is very calming for Spencer and it also helps with oral motor strengthening. While Christian's mommy, Melida and I get the boys together every week so that the two can have fun and that Spencer can work on his social skills, I have ended up learning a lot from her about how exercise can leave you feeling great. She runs marathons and goes for runs in the morning before starting her day. Wow, isn't she something? She also goes to school full-time and takes care of her kids full-time too. I remember the days I did yoga early in the morning before starting the grind with the boys. That was so cool but then I no longer could wake up that early. Maybe I can start that again too. I really did feel great back then.

Additionally, my speech therapist saw this photo and she thinks this is the proper way to blow bubbles (from the oral motor strengthening aspect). Notice he is not biting and he is blowing from the edge of the pipe. Some kids bite them to give themselves more support but this does not help oral motor functioning.

Why Everyone Should Google Their Ex

2010-05-10T23:47:00.002-04:00

On the night of Mother's Day, I had a dream about my ex-fiance. I do not remember anything about the dream at all which is probably a good thing because he and I ended on really really really bad terms when we broke off our engagement just two months shy of our wedding date.

I think he appeared in my subconscious because I was looking for pictures of a dog I used to have and stumbled upon photos from my mid-twenties when I was engaged to someone else. It is funny that I had a dream about him where I could clearly see his face since I actually don't have one picture of him and so I haven't seen his face in years. I am very black and white about break-ups and I throw pictures out. I am never friends with old boyfriends.

The next morning, I found myself googling my ex-fiance to see what he was up to. It has been over 12 or 13 years since I saw last him. I was kind of curious to see what his life was like. Getting a bit of information was actually really easy since his name is not a typical Korean American man's name like David Kim. If you search for me under Google, you will not find me until maybe the 10th page because Jennifer Choi is to Korean Americans as Maria Lopez is to Latino Americans. There are so many of us.

A quick search told me that he owns a bar or lounge and is a contractor for the U.S. military. I suppose that was impressive and the next thing you know, I started getting depressed. Where was I in life? Here I am at home with only a memory of a career and fighting depression, anxiety, and loneliness on a daily basis. I am sure he lives in a big house in the suburbs with 2.5 kids and is making good money. I am here in a neighborhood that my immigrant parents moved out of when I was 11 years old.

My day spiraled down even further after my husband called in sick and I decided to do some discount shopping. There was a new Century 21 that opened near my apartment and I had really wanted to try it but never had the time. I hoped that I would find something pretty to wear and that it would be affordable. I am a bit tired of shopping online. In my closet, I have a ton of things from Lands End that I have to return.

When I got there, the store had just opened and was very empty. This is a perfect scenario to score big in a name-brands-for-less store. The guarantee in such a store is that you will find something as long as you have the time and can deal with the crowds but it was Monday morning and there was hardly anyone there. I started grabbing anything that I thought was pretty and by the time I got to the dressing room, I was holding ten pieces of clothing.

As I tried the clothes on, I became sadder and sadder. The clothes were pretty but they didn't look pretty on me. I was a big blob in stylish clothing or at least I felt that way. What scene could be more pathetic? I had already been there for almost an hour and was about to walk out with just three pairs of beige underwear. Real sexy.

I thought about my ex-fiance and how embarrassed I would be if I were to bump into him at that very moment. I am 20-30 lbs. heavier than I was when I last saw him. I am none the richer and have no identity in a career at this point.

According to what I found in Google, he no longer lives in New York but still, you never know, right? His hometown is New York and I think his parents may still live about 10 minutes from where I was shopping. Ugh.

I am not quite sure when but some time during the day, I started to feel better. Yes, I am heavier now and no I don't live in a big house and drive a Lexus SUV (I know SUVs are not eco-friendly but I love the Lexus SUV). However, I realized that I do like my life. I actually really like where I live. And although I complain quite a bit about him, my husband is a good man. I thought about that today as I realized that Kai stayed home to reboot himself and I used the opportunity to go shopping while he stayed home with Spencer. He didn't complain one bit. I even told him to sit and blow bubbles with our little guy(our new favorite therapeutic speech exercise) and he just did it.

I also thought about how my husband is really a partner when it comes to the kids. We've become a bit more at ease with our special needs life. He is taking more of my direction and respecting it but at the same time he is aware of what is going on (to an acceptable degree at least). I am also getting better and communicating their progress and ongoing needs to him.

I thought about my ex-fiance and how I might not be able to say the same things about him that I've said about my husband above. I don't think I would like living where he lives, being his wife and raising not just one but two children with special needs with him. That last part makes me really think about how we were definitely not a good match because it is hard enough to see eye-to-eye with a spouse on how to raise a child but raising a child with special needs..... not every marriage can survive this life.

I suppose this dream that I had, the morning after Mother's Day, ended up helping me remember that I was one of those lucky people who escaped making the terrible mistake of marrying the wrong person. But still, here I was standing in front of a dressing room mirror and feeling sorry for myself because of what my life looks like and not what my life actually is like.

I think I forget how grateful I should be. I really really should be. My husband is a pretty decent guy and I have two kids who make me laugh and feel very proud. Last weekend, Logan was really driving me nuts with his hyperactivity and silliness - these are kind ways to describe the behavior. It was only 9 AM on a Saturday and already he had worn me out and then in the car, on the way to our weekly visit to Grandpa's house, my strange little six-year-old said, out of the blue, "Mom, I am going to buy you a car when I grow up and go to college and get a job."

My husband and I grinned at each other and then I joked around a bit and said, "Okay, but I don't want to share a car with Daddy. I want my own car."

Logan replied, "Okay, I can do that but Spencer is going to have to help me."

With that, Kai and I just laughed and laughed. I have to be grateful for Logan's heart. It is something that he's born with just like his ADHD. We are just so damn lucky he was born to us. I can lose 30 lbs and earn lots of money to buy a big house but Logan's heart is something I can never buy.

I know there is something in him that wants to help people. Maybe lots of ADHD kids do. My husband's job entails analyzing and reporting faulty trading activities and this month I explained to Logan, my math geek son, that "Daddy catches bad guys with numbers" and his eyes lit up with inspiration and excitement. He lit up again when I explained to him that if becomes good at chess and math then he could be a codebreaker when he grows up. I told him that he could break codes to understand messages written in secret patterns and find out which park has the bomb so he could save the children. Am I crazy or what?

Like my friend Sue always tells me, Logan will be really great some day..... I just have to survive his childhood. She is so right. I hope I can survive both of my math geeks' paths to maturity and when Logan eventually becomes a codebreaker or do something else in service of others, I hope I will finally finally finally be 30 pounds lighter!!!! I know yesterday was about celebrating our lives as mothers but I have to say that I was most happiest today because I remembered whose mother I am.

Photo 1: Logan can easily kick or push his little brother but he also looks out for him without any direction from me. Here he is surrounding the trampoline with cushions to better ensure Spencer's safety. This is the same kid who crosses his arms and says that he wishes he had another mother.

Photo 2: One of my Mother's Day wishes that I didn't tell my husband but hoped he would do was to teach Logan how to honor his mom on Mother's Day. On his way home from chess class, Logan and Kai bought me flowers. A single rose from Logan and a bouquet from Kai. Logan was proud of himself for putting a smile on my face and filled up the vase with water himself. I am grateful for both of them.

All Showers Lead to Australia

2010-05-06T13:13:00.006-04:00

My friend Melissa asked me if I know "three million people" because she thinks I have connections everywhere. I really don't but I think I do feel very connected to mothers with special needs children. It's funny but while I am sort of shy meeting new people, I have no problem approaching a special needs mom and immediately opening up to her and asking her personal questions too.

I love these moms for the advice they give me. I love them for listening to me. I love them for not judging me. And even when I meet mothers who are still in denial, these moms still have my heart because I know what it is like to be there too.

This Mother's Day, I have a guest post from a special friend who lives over 3,000 miles away from me. I have never seen her face in real life nor given her a hug nor met her children but she knows me and I know her. Her name is Hartley Steiner (pictured) and she is the author of This is Gabriel Making Sense of School and the diligent writer of the blog www.hartleysboys.com. Happy Mother's Day everyone!- Jenn

“Do you want to go to Australia with me?” My husband asked casually while I stood at the stove cooking the taco meat for dinner the other night. Such a ridiculous question didn’t warrant an actual verbal response, so I just looked at him out of the corner of my eye and gave a sarcastic smirk. He smiled, and said, “I am being serious. If you and I both start working on it now, we could find someone to take care of the kids for a few days and you could come with me to Australia in June.” He really was serious. And you know what, I wanted to go.

It isn’t going to surprise anyone to find out that spending a week away from our kids is something that we have NEVER done – heck we haven’t even made it 48 hours away from our kids in the last seven years. SEVEN YEARS.

Normally when I get asked by friends or relatives about traveling for an extended period of time, I always say my dream is to ‘be away from my kids long enough to miss them.” And it is true. The kind of stress I am under every single day as a special needs parent is not the kind that dissolves with a 20 minute shower. Not even close. And I spent years using that excuse to justify not spending any time taking care of myself.

But that changed about a year ago.

The light bulb went on when I stepped on the scale last spring – and well – let’s just say that instead of displaying a number, it actually said, “One at a time, please.” That was the first sign that I had stopped making time for myself.

The other signs were equally as disturbing; I was eating horribly (what my kids left behind, or fast food drive thru), wasn’t getting any exercise (chasing Matt should make me thin, but no such luck), hadn’t been to the doctor in years, never mind the dentist, and was down to having my hair cut 2 times a year at best, no matter how awful it looked. I would NEVER accept those things for my kids, so why was it OK for me?

I realized then that respite time had more to do with how I was treating myself – that taking the 20 minute shower was symbolic of self value and, more importantly, a stepping stone on the way to Australia. (OK, so I didn’t actually know the whole Australia thing then, but I knew it was a stepping stone towards something.)

I made a commitment to treat myself better. To treat myself, my health, my body, my mind, all of my needs, as if they were as important as my son’s needs.

The irony is that because we have special kids, we somehow have convinced ourselves that taking care of our own personal needs is a luxury. It’s not a luxury. A Mercedes Benz is a luxury. A Rolex is a luxury. 1000 thread count sheets is a luxury. Taking a shower, spending time with our spouse, or even going out with our friends is not my definition of a ‘luxury’.

The well kept secret here is that we can choose to take care of ourselves AND our kids.

I started my new self-care campaign by committing to getting myself a shower, if not every day, hopefully every other day. Do you think that was easy? NOT EVEN CLOSE.

My choices were to either, a) awake before my kids like my husband does by getting up and into the shower before 6am or b) find a way to distract my youngest son Matthew while the older boys were at school, and jump in then.

Now, I am not a morning person and I don’t drink coffee because I can’t stand hot beverages, so that ruled out option ‘a’ pretty quickly (I may just be the only SAHM on the planet that doesn’t sip a latte every morning, but thus far, Starbucks hasn’t seen a dime of my money).

This left me choosing option ‘b’, which requires a great deal more creativity and even a tinge of daring on my part. Matthew, as much as I love that small child, is a mess waiting to happen. Which means, no matter how well laid my plans are, no matter what awesome ‘new’ show I have recorded, no matter how many bribes he has in front of him, he will be NO WHERE near the spot I left him when I get done with my shower.

But, I am willing to take that risk.

And when I get out of the shower, wrap a towel around my head, and run through the house in my underwear surveying the damage he did in mere minutes, I remind myself that it was worth it. Because I am worth it.

But showering was only part of the plan.

After I had showering under my belt, I began to feel better about myself – dare I say even less stressed, and that feeling was addictive.

Soon I turned my new self-care addiction into going out for dinner with my girlfriends, attending more support group meetings, the occasional trip to the gym, going to the doctor, getting my hair cut, replacing 10-year old clothes with new ones, and going on dates with my husband. I even painted my own nails at night when the boys were asleep.

It was a change of attitude really: A change of perception about me, and about my life. It wasn’t (and isn’t) about just being away from my children, or doing frivolous things, but rather about allowing myself to see me as more than just a SAHM or a Special Needs Parent. Those are only part of who I am.

Taking time to out to take care of my needs allowed me to remember that I am a whole person, not just one label or another.

I spend a great deal of time talking about my family on my blog and in my real life, because I love them and they are truly the focus of my life every day.

But they aren’t the sum of who I am. I am much more. I love to laugh, can bake amazing desserts (cheesecake and lemon pound cake are my favorites), still listen to rap music, enjoy photography and have been infatuated with the ocean since I was 9 years old and decided to become a Marine Biologist, despite getting decompression sickness while SCUBA diving and going through hyperbaric treatment in Hawaii when I was 14. I bet you didn’t know those things about me, right? Truthfully, I’d begun to forget about them myself.

The bottom line here is this: It is OK that I want to go to Australia.

Two years ago, there is no way I would’ve been able to admit that and honor that I needed time for myself and that it would be OK to leave the kids for a week (Although I have yet to master the logistics involved in leaving them for an extended period of time). I know now, that taking time for myself and for my marriage will make me a better person, wife and mother.

And I have proof of it in my daily life – in the way I am able to be with my kids, and honor their challenges. In the way I am able to see my husband and support his dreams. And in the 20lbs I’ve lost without so much as being on a ‘diet’ this last year. Turns out taking care of your own needs is a good idea – and it is never too late to start.

Now, I know all of you are not going to read this and run off to Australia – but my hope is that you do run off to the shower, because as you now know, all showers lead to Australia.

-- Hartley Steiner, Australia bound mom, special needs advocate, blogger at www.hartleysboys.com and author of This is Gabriel Making Sense of School.

Geeky Children, Geeky Parents

2010-04-30T14:27:00.002-04:00

Once in a while you do something out of the ordinary and rejoin the world of typical parents just for a few hours and you realize just how out-of-place you really are.

This past weekend, I attended a bridal shower for a dear friend but unfortunately, I really didn't know anyone there. Thus, I ended up sitting and chatting with three women who knew the bride from college. There were all married and had children, and from what could discern, all of the children were typically developing. I was just happy to be sitting with moms because I thought there could be some interesting conversation but it was more interesting-odd rather than interesting-cool or interesting-useful.

At the beginning of the shower, I decided in advance that I would not blurt out my special need-ness to anyone. I thought I might reveal it later but only if it was necessary and hopefully it would come out casually.

I tried to be an observer instead and listened more than talked as the moms and I discussed topics like schools, emergency rooms, staying home, juggling work and family, etc. I started feeling really distant as they delved into subjects like sleepovers and afterschool activities.

I listened as they talked about how many boys or girls were in their house for their last sleepover and how it went well except for the girl who went home early. "But she has issues," the mom said. I thought about my kids and how they would feel about sleepovers when they got to that age. Would anyone invite them? Would they even have any typically developing friends? Could they control themselves and their emotions in someone else's house?

And then there was the discussion on weekend sports activities. I envied these women who could take multiple children to classes and have their child who may not be attending a class, patiently wait until their siblings finished their classes. That would never be the case for us. I can barely take my kids for a walk in my neighborhood without fearing for their safety and constantly redirecting them to behave more appropriately to the point where I am breaking a sweat.

I then got really lost when they started talking about middle schools and high schools. They seemed to know everything about which school their child would eventually attend. I know my children are young but I have no idea how much they will be able to overcome their disabilities in a few years from now. I have no idea when they will no longer need an IEP. Maybe college? ugh. Thus it is hard to look forward to any school. I guess that really sucks because I will not get to plan ahead as much as I want and if I try to plan ahead, I could very well be wasting precious time that I don't have.

I could have mentioned this in our discussion but when things like this came up, I just listened. I just listened to all of the things that I do not have. Strangely, it really wasn't envy that I felt. It was more loneliness. I knew that it would be strange if I opened my mouth and started talking about how it was so great that they knew which school their children would attend because mine had special needs and that we've been living between question marks and exclamation points since the days of breast pads and crib mobiles. I had a feeling that they might not get my meaning. I wonder if they would take it like, "Gosh, you are so lucky that your car turns on and you can drive after you put the key in the ignition."

Giving more of my life's details and start rambling out acronyms like ADHD or PDD would probably not bring about any comments I want to hear. I guess I'm tired of hearing stuff like, "my nephew had it and he's fine now," or worse, the eyes shoot straight down to the floor because they have nothing to say and I for some reason end up feeling ignored or stupid or regretful for saying anything at all.

Why do I feel like this? It's only a bridal shower. Why can't I just be happy for the pretty bracelet that the bride's mother made for each guest and the manicure set that I could also use to clip my kids' fingernails.

When the subject of extracurricular activities came up, I said that my kid had no luck with soccer but rather we have been trying out chess lately. ( I don't know why I had to begin with talking about his soccer failure first). I suppose I felt the need to extra-explain why I put him in chess class. The bride's mom had lovely things to say about how chess is good for promoting intelligence. I felt embarrassed after I talked about it, as if everyone at the table thought I was boasting about my smart kid who has a hard time doing other things but is great at the smart people's game. The other moms practically said nothing which made me feel even more odd. One did mention that her son learned chess but conversation didn't go anywhere after there.

I finally did mention that my son had "attention deficits" without spelling out the whole disorder and wasn't asked a single question afterwards. I wondered if that scenario was odd. I wonder what I would say if someone was talking to me at a bridal shower and she said that her son has cerebral palsy, so swimming is hard for him, . Actually that is not a good comparison because I identify with pretty much any mom that has a child living with challenges.

So what is my point? I am not sure if I have one except that I really feel like an outcast (or geek) sometimes. I really think that I am no different from my kid in that I find it so incredibly hard to be socially appropriate or just plain likable. I feel like I have no commonality with many women regarding the issues that are so incredibly huge in my life. Thus, I feel lost and out of place in their conversations. I also feel like I have a family of geeks and while you think I am trying to be humorous, I really just want to make sure that my kids will have friends when they finally mainstream out among their typically developing peers. So far, Spencer is completely obsessing about subways and numbers. Logan still likes math and chess and driving games on the Wii. My husband rarely sees or speaks to his friends and if he does, it is because they called him.

Okay, that says it all I guess. We are a family of geeks and I love them and see that the geek in them might be the one thing that brings them into society. Logan has already said he wants to be a mathematician even though neither of us really know what a mathematician does. Spencer is exhibiting cognitive talents more and more each day. Whispers of the word "Asperger's" seem to echo in the air. He definitely seems to have some traits of autism spectrum disorder and I always thought he'd grow out of the PDD-NOS diagnosis. Oh well. They are just words. He is still him, a geek, just like his mom.

Photo: My first-born geek, Logan. We went to a park and Logan managed to find leftover geese food on the ground. Sometimes, I wish I wasn't so safety-conscious (and that he was more safety-aware) so I can let him explore like the way I was able to when I was a kid.

My Mother the Scientist

2010-04-17T09:04:00.010-04:00

I think I finally realized that I would never be good in science after I took my first high school science class. The class was called "Earth Science," and my instructor was a very good teacher named Mr. Cave.

Perhaps high school is when a kind-of-smart-but-lazy A student finally becomes a B student. For me, I usually did well in my classes from elementary to junior high school even though I didn't pay very close attention to the teachers. Things weren't so hard and if they were I would teach myself the lesson with the textbook and solve things that way. I never went to the teacher for help and my parents couldn't help me because they didn't speak English. If the subject was boring then I would really need to have a good teacher to help make it interesting. Mr. Cave was one of those teachers and I was lucky for that because I hated Earth Science. However, despite Mr. Cave's good teaching skills, I barely got an A- that year because that was the year we started to have to do hands-on projects requiring cooperation and observation in the lab.

Lab was awful. I don't know why but I had two left hands and half a brain during lab. I remember one day that I had to position a lamp to face a pot of soil ( the sun warming the earth) and then measure the soil's temperature every 10 minutes or so to mark the increase. I do not know why things like this were so hard but it was. Perhaps it was ADHD coupled with anxiety from having to work with someone else? I do not know but I won't be surprised if Logan ends up struggling in science lab. While hands-on work comes naturally to him, cooperating with others does not. Additionally, in lab, both his and my trial-and-error style of learning is not really supported there. There is just not enough time.

Now I feel just as incompetent as I had when I was in the lab but this time, that pot of soil is now my son and that lamp is a variable otherwise known as diet, stimulants, and the question of the month: pollen.

This is Logan's sixth Spring season but for the past three years since his first evaluation, I have noticed that he becomes very difficult during this time. While his behavior during the other months is no picnic, for some reason, I see him as especially difficult in the Spring. On some days he shows zero frustration tolerance and becomes easily angered and irritated. I usually describe Logan as a happy kid that is very hyper and easily overstimulated but in the Spring, he can be very wild and even foul and that really disturbs me.

I am still taking data on Logan to see why he has a good number of "off" days even when he is on stimulants.. What I've found out so far is that he seems to be more irritable when he doesn't get as much sleep (even 30 minutes makes a difference). Now, I have started looking at the pollen count to see if there is a correlation in his behavior.

On some days when the pollen count is low, he is better behaved but there are days when the pollen count is not that high and he is horrible. I am not sure if that blows my Spring allergy theory out of the water but it doesn't look good. On top of that, he has already dealt with the post-nasal drip from Spring allergies and now when his behavior is at its worst, he is not showing any traditional symptoms of allergies (runny-nose, itchiness, etc.) Does this mean that the allergies have settled into his system and is now wreaking havoc on his brain? It doesn't make any sense but what else could explain this seasonal dip in behavior?

I really hate this. I do not know what I am supposed to do. My DAN! doctor used to put him on Singulair but this was not really to treat acute allergy or asthma symptoms but rather he believed that the Singulair would do something to the leukotrienes in his body to help alleviate whatever is causing his ADHD. (Can not remember how he explained it to me, sorry.) Alas, the many months of taking Singulair did nothing as far is I could tell. I sometimes wonder if I didn't give the treatment enough time. To be sure, Logan has those dark patches under his eyes a.k.a. "allergy shiners." which DAN! proponents say is frequently found in children with autism (I guess ADHD too).

I am not the only person who believes that Spring makes some ADHD kids crazy (or crazier). My social worker who works with ADHD children in a public elementary school told me that the children in her care are having quite a hard time now. She believes it is the Spring allergens as well.

Even though my pollen count data doesn't support this but he really does seem different these days. The worst part is I have no idea what to do about it. How can I medicate this? How can I get rid of this? Can I just talk to him? Should I re-examine his diet to see if there is anything new in there? We just started Pediasure supplements two weeks ago, but I doubt that matters. Should I just continue with what we are supposed to do everyday or should I just let him be and wait for this to blow over? I really don't have a clue and that leaves me feeling helpless.

Whatever it is, I know I do have to be careful. Even if this behavior is temporary, there is a side of Logan that does things by habit so if I cut him too much slack, he will expect that even when he returns more to his normal self. I guess this means that I have to be really strict or tough or consistent or all of the above. I hate this because there is a part of me that knows that he must be feeling so awful inside if he is acting this way. I can see it when he finally breaks down and cries uncontrollably. Sobbing can actually help calm him down but only sometimes. I can see it when he starts to let his body feel tired and he seeks the comfort of his blankie. I wonder if he's feeling scared or depressed or hating himself when he is out of control.

As I write this post, I find myself resolving to be really consistent but at the same time, I think I am just going to have to spend more time with him. I guess that is something you would do for someone who has come down with say... pneumonia. Perhaps I should look at it as if his brain has come down with some sort of brain-pneumonia and so it's just not functioning optimally. And while I wait for him to heal, I can temporarily alleviate his symptoms by helping his brain do what is really tough for him: calm down and feel better about himself. There is only one quick-but-temporary method I find to work well towards this goal. Some experts call it "attending." Kai and I learned it at the NYU Child Study Center when we participated in a research study that was examining parent training methods.

I first read about this tactic in Russell Barkley's Your Defiant Child. Dr. Barkley called this method "Special Time." It is a simple exercise where you play with the child but you do not ask questions nor give criticism. You let the child take the lead and play with what she wants to play with (no video games.) You are supposed to praise and narrate her play. When the child displays errant behavior, you stop narrating and look away and say nothing. When desired behavior returns, you resume narration and praise.

When I first did this, I couldn't believe how well it worked. For me, the goal was not to change my child forever but just to make him behave better. After doing a few "special times"a week, I can honestly say that I did see some positive changes, at least at home. The exercises helped to calm him down and feel happy and I guess that made him behave better. Those results usually didn't last beyond the day or sometimes even an hour, but it was apparent to even poor scientific observers like me, that they did indeed help.

Logan loved "Mommy/Daddy and Logan Time" which is what we called the exercise. At the end of the 15 minutes, I thanked him for the time and told him that I look forward to the next time we did it. I wish I had the energy and will-power to keep doing this on a regular basis. Fifteen minutes seems somewhat simple but it is actually very difficult for me. Spencer must not be involved which can be difficult to manage. Additionally, we just have so much to do. There is homework, play time with both of them present, dinner, bath, and time to wind down to let Logan's sleep aid take effect. (They were a lot stronger when he wasn't on stimulants) Him sleeping later is not an option because I think that will produce negative results the next day.

I think perhaps this is all I can do for now. My pollen data chart is ridiculously unhelpful but I'm going to keep doing it for now just to see where it takes me. Honestly, I am surprised that I haven't done this before. It just makes sense to at least try to be a little scientific about figuring him out. At the moment, I am using Pollen.com which is helpful with its daily allergy forecasts being sent to my Inbox everyday. They even tell you what the predominant pollens are for that day. The best part is that you can look up past history of pollen in your area for up to 30 days. I especially like that feature because it helps me, the world's most oblivious mother, attempt to be somewhat scientific in finding out the root causes of Logan's mysterious extra-ADHD behavior in the Spring.

Photo:
This was taken today and he had had a very tough morning. He did get some sleep in the car at noon which tells me that he must have been very tired. He never brings his blankie into the car but asked to bring it with him today. I suspected that he must have been feeling really insecure and sad this morning when he was angry and impulsive. A ride in the car seemed to calm him and help him become sleepy and he began to comfort himself and quiet down. Maybe today's bad behavior was not pollen-related but rather due to a lack of sleep? But the question is now - how do you get them to sleep more? I can't give him a time-out for waking up early.

The Search for Passion Continues

2010-04-12T13:24:00.012-04:00

Ever since we have had trouble with the Wii in our home, I have noticed that Logan has not wanted to play Chess so much. He has a CD-rom that enables him to learn chess moves and play against the computer but that has been untouched for at least two months. I have been getting a bit worried about this.

Since summer is approaching, I have been thinking about other activities for Logan other than his private swimming lessons of which he has become quite bored. I started thinking about actual chess lessons since I know that Logan really does like it and hoped I could find something affordable in my area.

Luckily, I found a chess class that ran in the Spring for five weeks and they were offering a free trial class. When I called they said that only two kids were enrolled which of course was good news to me. I signed up for the free trial right away.

This was my opportunity to find out if my Logan had a bit of chess genius in him. I knew that he can beat my husband sometimes so I hoped that he might have a real talent that could be nurtured. In truth, I am looking for anything to help get him excited about life. Logan is not a depressed boy by any means but as he gets older, he will have to feel proud of himself in some way because he is starting to realize how hard it is for him to do seemingly simple things.

I feel paralyzed when he starts to cry and tell me that he is stupid. This kind of talk has been coming out more and more lately. Sometimes I think I know what to do in these situations but do I really? Should I be understanding and yet strict and make him do it anyway which is kind of the time he starts wailing with the self-pity? ie. homework, reading a book, finishing his lunch, etc. This is a whole other can of worms which I am still grappling with. I'll write about it hopefully soon.

I was so excited about the chess class. Logan looked relaxed about going too. It was as if he knew that he'd be comfortable there. When he got there, he met the instructor and was allowed to bounce around in the gym area until class started. "PERFECT!" said the OT deity that lives in the back of my brain. Bounce around and then sit down to focus? What could be better?

Within a few minutes, the other kids rolled in and unfortunately, newly enrolled children also showed up so it was five kids in total and not three. I thought it would be okay and Logan sat with his back faced to the gym (good) and across from the teacher (good). I had told the center ahead of time about Logan's issues. The class was almost an hour long but Logan only lasted about 40 minutes. In the world of Logan, 40 minutes is tremendous but still I wasn't happy. I dislike him leaving the class early especially on the first day. It sets a bad tone and tells me that he would likely stay in class even less than 40 minutes if we decided to try again.

Either way, the instructor told me to have him come to the class that took place right after the one we tried. That class is geared for slightly younger children and had only one student in it so in a way, it was better for Logan. Still, I liked the class with kids his age but could feel that the teacher really didn't want him in that class anymore.

Additionally, it was important for me to find out if he thought Logan had any real talent for chess and I was disappointed to hear his tepid response. "He did some things," the teacher said. I didn't completely understand that comment but I guess it basically meant that Logan is no chess genius. I feel embarrassed to say this but I was disappointed. I was hoping that chess might be his "thing." Better chess than say... Mario Kart, cigarettes, and cutting class, right? I know, I am thinking way too far ahead and secretly wishing that chess can prevent possible pot-smoking in the future.

The teacher didn't seem to be enamored of him in anyway either. This was short of inspiring to say the least and really, you have to be a little inspired to put your very distractible kid in a chess class, right? I have also been struggling with these questions: Should this result tell me that I shouldn't enroll him? Should I keep searching for another chess class or maybe not even bother? Does he have to have great talent for something for me to give him a shot at it? What should determine the answer? Tuition? Logan saying he wants to go? I want so desperately for Logan to be proud of himself in something other than Mario Kart (Wii). Maybe chess could be it because swimming doesn't look like it is his thing.

Today I read an article in ADDitude.com about a person with ADHD who finally excelled in life after he realized that he could run competitively. His story brought about a lot of comments in the The New York Times' Well Blog when I had first read about him last year. He found his talent when he was a young teen and forgive me for my greed but I would love to have Logan find his "thing" at a much younger age. Tomorrow would be a great time. Kids like mine require so much motivation to move on. Finding his passions and talents could certainly help him go in the right direction. Uh, and it could make my life easier too- I can't help but think that this notion might be propelling me at least subconsciously.

I sincerely pray that both Logan and I (and Kai) will have the ability to find and recognize his passions and talents sooner than later. I also hope that we will have the means to support those talents once my husband and I figure out what they are. Hope it will be something that more closely resembles things like chess or swimming and less like other interesting things such as extreme dirt-biking or speed racing. I suppose there could be worse things than being a race car driver but please oh please God, can you give us the chess and give the race car bug to someone else?

Video:
While it's not chess, I think Spencer is very fond of numbers and so his therapist and I use it to motivate him to do other things. Here he is washing his hands appropriately because on the educational flyer that we got from school (that my friend made at the department of health in this city- yes, small world), he is advised to wash his hands for 20 seconds. He sees the number 20 and he is more apt to comply. While he has several delays and his behavior can be whacky at times, I am so happy because he seems to be advanced in early math skills. I basically live with three numbers geeks. When I see numbers, I run in the other direction unless it is a big sale for clothing, shoes, and toys.

Wii: Friend or Foe?

2010-04-06T08:36:00.005-04:00

I know that mine is not the only family to go through this issue but boy AM I ANNOYED!

This past Christmas, my brother bought a Wii set for Logan. I was really grateful not only because it was an expensive toy but also because the last time I had tried the game for Logan, he failed at it miserably. To me, the Wii was just another typical thing that my atypical boy couldn't enjoy. I was especially dejected because I had heard of the potential therapeutic effects the Wii could have. It seemed like a wonderful way to move around productively so he could get that out of his system but alas, it proved too hard for him so we decided not to keep it.

When Logan tried the Wii this year, the games we tried were different. Everything seemed easier and Logan took to it right away. He was in heaven and we watched him enjoy himself the way you watch a kid eating an ice cream cone for the first time.

That was over three months ago and our lives seem to be different now that we have a Wii. I actually find it hard to remember what we used to do without a Wii. He loves and plays with it so much. We are going on vacation in June and I actually planned on taking it with us but now I am not so sure.

At first, Logan just played the Wii Sports game. That was easy enough. He liked it a lot and was able to teach himself how to do everything. That created less stress on all of us. Logan likes to learn by trial-and-error when he is excited enough about the lesson. Wii Sports definitely did keep him busy but eventually he would get bored and walk away.

However, my husband then bought a game called Mario Kart, a race car game, which really didn't have any educational or therapeutic value at all from at least what I could see. I suppose it could possibly have some hand-eye coordination help but really, unlike his Leapster, Logan is not asked math or spelling questions and unlike Wii Sports, he is barely moving any part of his body. Nevertheless, Mario Kart is his favorite game and he bothers no one for quite a good chunk of time while he plays.

This past week, we had a break from school and Logan was allowed to play the Wii intermittently throughout the day. I would often try to hide the remotes or the game CDs so that he would not play without my permission because once he started, it was a struggle to get him away from it. I would have to hide the CDs in different spots because he knew where my hiding places were. In the morning, I would walk into my kitchen and see every cabinet door left open because Logan had been looking for it. He was like a wee little drug addict needing his fix so badly that he didn't even bother to try covering up his tracks.

Sometimes, I would forget to hide it and I would wake up at 530 AM to the wonderful vrooming zooming sounds of the Mario Kart. I would quickly tell him to turn the volume off or to not play at all so that Spencer could continue to sleep. Thus Logan, my crafty angel, learned to play in silence and I think he soon realized how rewarding it is to play video games at 530 AM when everyone is asleep and no little brother to bug you and no Mommy to nag you to turn it off. I think Logan's ritual with Mario Kart is akin to my 3 AM yoga rituals. We all want to be undisturbed when we are having our "treat."

Unfortunately, his love for the Wii seemed to be turning into an addiction. Admittedly, I knew I was partly to blame. I was depending on it to motivate him to do his homework or to keep quiet in the morning. I know how typical families feel about video games more or less. They set limits with it and it is used for reinforcement as well as punishment. I think I was doing the same with it but perhaps I was using it too much in that respect and that was perhaps the biggest downside. So I decided to examine it from our family's point of view. Is the Wii a friend or a foe?

Friend:

When he gets to play without his little brother bothering him, he is quiet, not bothering anyone, and that is heavenly when he wakes up early in the morning. Logan can be very loud in the morning so I normally have to wake up too and try to keep him quiet until the others awake.
Logan feels very confident with his Mario Kart and I saw the potential in successful playdates with the Wii. He would likely learn new games with great enthusiasm and he would love to teach others how to play the games he knows.
He can also just sit and play and be satisfied and not need much maintenance from me. That is very appealing to me, I have to be honest. At playdates, I love talking to the other moms. We dish about husbands, sex, money, schools, and special needs. Uninterrupted girl talk: priceless.
I can use it to motivate him to do stuff and use it also to threaten him when he isn't doing what he's told. This past weekend, he had a really rough day and I actually told him that he can not have Mario Kart for two days. Of course the next day, I had to leave the house and my dad babysat and while I had hidden it, I think Logan managed to trick my Dad into finding it and giving it to him.

Foe:

He is constantly wanting to play. His latest epiphany in realizing that Wii is best in the morning when everyone is asleep motivated him to stay awake when he awoke at 2 AM on a Sunday. He had been woken up by his brother and usually Logan can go back to sleep that early in the morning but this time he decided to wake up and that was a horrible night for our family. Kai got angry, I was exhausted, Logan ended up crying. It was ugly.
I use it for reinforcement but I haven't been careful about how often I use it for reinforcement. In fact, I have been using it too much and so in a way, the Wii has become the center of his universe.
I do want Logan to learn that he has to do his homework because he just has to and not so that he can play Wii but once you start using the Wii as a reinforcement then it is hard to stop the trend.
Video games makes for a voracious appetite in him. He is quickly losing interest in other activities like chess, playing with Mom or Dad or brother, and his Leapster which used to satisfy him but now it does not at all. Now he is asking for a Nintendo DS and my husband and I are trying really hard to wait as long as possible to buy it for him. I want to wait until the end of the year but we might buy it to help him keep busy when we go on vacation (as if vacation won't keep him busy enough, but I know the truth... there is only so much Disney and swimming pools a boy can take.)

I thought about getting rid of the thing completely but I think that is not a great idea. The "friend" list is significant and like cellphones, the internet, i-pods, etc.... we must learn to live with them and live with them productively. While they can take over your life but these games are a part of many boys' life and I have to learn to make peace with it somehow and perhaps, even make it work for me.

So the Wii stays but I had a long talk with my husband and I laid down some rules. My husband had almost no input but that is okay. I am used to it. I told Kai that Logan hasn't shown much interest in anything else this month except for the Wii. I think he saw that too. I told him that Logan can only have the Wii if he does his homework and he can only have it for 30 minutes. For now, he can also play if he has guests. I'll see how that rule pans out. I realize that this new rule means that we can no longer use the Wii as a crutch to keep him quiet and busy but unfettered use of the Wii is causing even more problems than his usual hyperactivity-caused-by-boredom. Who needs more problems? Not me.

Photo:
Building toys like this Kid K'nex set was and still is a favorite of his but now I see him use toys like these a lot less.

Medicating to Move On With My Life

2010-03-31T03:42:00.007-04:00

Are you one of those people who are awesome at helping others including your children and husband but when it comes to helping yourself, you totally suck at it?

I certainly get a thrill at helping my children and other moms going through the special needs ringer but when it comes to just looking in the mirror and moving on towards my own goals, I am just plain flawed. In fact, I have always been bad at this. You may think this sounds very modest of me but I really I am kind of ashamed. It is the reason that I don't feel like I'm really so good at anything and it is the reason why I don't feel very accomplished with my own career. Now that I've taken a break from my career, the feeling is even worse.

I started to become more conscientious about this side of my life again after Spencer was accepted into Logan's school. Before he did, I would tell everyone that since I won my court case for Logan, the only thing I'm worried about is where Spencer will go to preschool. If I can get him into the right school, he could have a great start and hopefully won't have to go to three special ed preschools like Logan did.

When Spencer was accepted into Logan's school. I was elated and then when I started to come back down to earth (believe me, it took a while), my friend asked me, "So what's your next big project?"

Ugh. Do I have one? Should I have one? Of course I have one. It's the worst one ever.

My next big project is ME.

I think this is the toughest project of all because I just suck at working on myself.

A few weeks ago I wrote about how I was only ten pounds away from being obese and you would have thought that I would have never let myself get one pound within that ten pound bracket but I did. Of course, I don't want to blame myself for this but in a way, I was really concerned about my thyroid and was aiming to make an appointment with my new doctor but never did.

However, last week, when I was feeling unusually lost because I had no pressing deadlines except having to update this blog at least once a week and trying to prepare for part-time work when Spencer starts preschool.

I have already decided that I will not return to full-time work once both boys are in school. Spencer's preschool is 5.5 hours long so it's almost as if he is attending regular school but still I do not know who would want to take care of my children afterschool. I do not know who would be available to take care of them during the numerous school holidays and chunks of vacation time. I know some people find ways around this but I don't think I can. Additionally, I also still want to be here for them even though the hours that they are home from school are really the most stressful times of the day.

I realized something about myself last week. I just need help. I am just not good at doing things for myself and I'm not talking about getting a manicure or a massage. I am talking about setting up plans to make this major adjustment in my life from being a stay-at-home-with-no-income-blogging-mom to a stay-at-home-with-some-income-blogging-mom.

I have decided that the best option would be to start a freelance career and possibly turn this blog into a book but this really requires so much self-discipline and self-starter motivation. I must face the fact that I just do not have this. The evidence is on my stomach, arms and thighs too because I suck at losing weight which really requires motivation.

I need deadlines and I think that is an ADHD thing. I really just don't function without them. Even my last job as a hospital publicist was driven with so many daily deadlines. Many of my non-deadline projects which were always the more challenging but interesting would just get buried.

Well, the thought of having nothing to do but laundry and cooking when Spencer and Logan start school in September is so depressing. Some people advised me to take a break and I guess I can try that but I really don't feel comfortable until I do at least something small to get started on my goal.

When I saw my doctor last week to discuss a possible thyroid problem, I also talked to her about taking stimulants again. (I had taken one from an old bottle the day prior and gotten a lot done that day) I still don't know if I have ADHD or not but I still highly suspect it given my childhood and my style of working. I just don't do well without pressure and now that I am looking at a career that needs me to be a self-starter, I am hopelessly flailing. So I have been on the medication now for about five days and it has been helping.

I have not been able to do much on building my new career because there is a school vacation here in New York this week but irregardless, the medication has definitely helped. I have been getting things done and have tried stay organized despite the tremendous break in routine from the kids being off from school. I have been more patient and upbeat with my children as well. The stimulants are especially helpful when I am working on reading with Logan because he hates reading so much even though he can read above grade level.

The side effects still need some getting used to but overall I am glad I decided to help myself this way. I am hoping that once I fall into a new lifestyle where I will have deadlines because I have many jobs, then perhaps I may not need the medication. To be sure, it does not help me with my forgetfulness. That is only solved by me being consistent in updating my blackberry. However, with the meds, I feel I have myself there (in my head) to remind me to get moving.

I have even started to turn off my computer because I've realized that at most times, I am doing nothing while I'm on it. I didn't want to face it but I have realized that I have been constantly checking my email to see if anyone wrote me. It's as if I'm looking for people asking me to do something because I feel like I have nothing to do. The medicine is helping me move away from this bad habit. I hope that it will help me accomplish my goals. I need to move on with my own life. Wish me luck.

Photo:
This break has been hard for me because I've had no help at all. On top of that, the weather has been awful so I couldn't even take them out. Yesterday was the first day that I had trouble breathing in a long time. They were that crazy. I credit the medication for giving me the patience to get my kids to walk to the swimming pool in a rainstorm so that they can be out of the house and have fun. Unfortunately, Logan started turning blue after 45 minutes and so we had to get going. My husband thinks it is because he is so skinny. The stimulants he's taking really don't help the situation.

Spencer was no picnic either. Getting him to the pool was very hard because I had to put new rain gear on him and he gets upset by anything new. He also didn't want to go because he didn't want to get his "boo-boo" wet. Lately he has been wearing band-aids. While he has finally allowed me to put one on him, he will only take one type of band-aid and it has to be the same size. He will also scream when I put an antibiotic cream on him but I do it anyway even if he doesn't need it so that he'll get used to it. His therapists and I are working on this rigidity and I am working on breaking routines without driving him nuts. I hope he starts to loosen up soon.

What Happens When You Go To Bed Angry?

2010-03-25T09:18:00.007-04:00

Logan is in a great school but that does not mean that he is going to have great behavior every day he's there.

I have to keep telling myself that because every time he has a bad day, I start to visualize what he could have done, how much stress he must have felt, and if the school will let him go eventually. I will never get over that fear, having had my child kicked out once before, without warning. I have even talked to the school management about how a child is asked to leave and what he told me was so reassuring but my anxiety is WAY TOO POWERFUL. I heard his words. I believe them but I have to feel it in my bones.

That said, we were thinking of changing his medication or his dosage AGAIN. His teacher and school psychologist both talked to Logan's developmental pediatrician and I expected a change right away. Instead, they gave me homework.

More homework. Great. I hate that word now more as a parent than as a kid.

I was asked to keep a diary that notes when and what time he gets up and what he eats for breakfast, when he takes his meds, his morning mood, and when he falls asleep. It's not hard to do but I was a bit annoyed that my doctor wasn't just going to give me a new script. More work for me..... that's what I thought initially.

However, I think it's better this way. I really need to see how much sleep affects his behavior. I noticed on the days he is best behaved, his lunch comes back completely untouched.

You know what..... I'm am digressing from the real point. Here it is....

I had a big fight with my husband on Saturday night and we have still not made up yet. Today is Wednesday and I have not spoken to him at all except for things like bringing home cash or being home at a certain hour so that I can attend a meeting. I do not even say "goodbye" to him as he leaves the house in the morning. This is huge for me because I am big on greetings. Call me Korean. When I was little, if I didn't rush to the door when my dad came home from work and greeted him with a bow, I would get lectured or bopped on the head.

Nevertheless, the most awful thing about our fight is that for a while there, I don't think he knew that we haven't made up yet. He probably was just going to move on but I think he doesn't realize how upset he made me. We basically fought about the kids (surprise surprise). Kai instituted a big change in rules without telling me and I told him that it wasn't a time for change because we are working on this food-sleep diary thing right now and the change he wanted to institute had to do with mealtimes and thus would affect data collection.

He complained that Logan's refusal to eat or feed himself is out of hand and that I look so unhappy and am constantly complaining about how hard it is when he comes home. Huh? I never wanted to be that person but apparently that is how he sees me. And then, he even went as far to say that I am not telling him anything. Right, as if having to settle for grunts and barely any acknowledgment when I give him updates is not belittling and disrespectful to me. No thank you, I will keep my updates to myself. You can ask me for one if you are so curious.

I certainly have a job in this house and I do not feel like I have to give him all the details. He is not my supervisor. That said, I do email him from time to time about things going on. I feel that email is easier. We both have more energy during the day. By the time we put the kids to bed, no one feels like talking.

Additionally, he is not a talker by all means so short sentences on emailing him to communicate is less stressful and disappointing for me. Who ever thought email could help facilitate better communication in a marriage? It really helps his poor communication skills because he is at work already so as a natural consequence, he emails me using office-based courtesy. That means, if I say something, he will acknowledge receipt which is more than what he does at home. And for my end, I can not get bothered because he is not facing me when I'm talking to him. I really hate that. I honestly don't know how I deal with Logan's ADHD since not looking at me when I talk is a hallmark trait.

Irregardless, I am getting more upset at how my husband doesn't even realize or does realize but is purposely ignoring that I'm still mad at him. Fighting is one thing but he used some really harsh words when he was talking to me and I found it to be abusive. Don't get me wrong, he's not an abusive husband (I've had abusive boyfriends before, trust me). However, abusive words are abusive words so I told him that the mean disrespectful talk had to stop. Still he didn't apologize. He was too mad at the time and he thinks everything has blown over by now.

Sorry, but it has not. I didn't ask for an apology and I am not waiting for it anymore. Instead, I have decided to just live like a person who deserves an apology. It would be better if he was sorry and communicated that to me but if he doesn't know to do that then I will have to just show him and myself that I deserve to be treated better. I think the best way to do this is just by making myself happier and sacrificing less.

So far, it's been fun! Some of my self-therapy:

-I bought silly things like gloves to wear overnight as you super-moisturize your hands ($3).

-I bought a sweet smelling body mist ($6) because perfume is too expensive but eventually I will get it. I promised myself. I am still in love with Issey Miyake

-I'm taking Logan to see a marionette show for the first time in his life. It's also a playdate with his classmate. I emailed Kai to tell him that I'm going because he'll have to watch Spencer. He emails me saying that it was fine and then asked me how much it was..... I decided not to answer him because since it was only $15 dollars for the both of us, I didn't even want him thinking, "oh well that is okay." I do not need his approval.

-I'm going to meet my friend on Friday night after the kids are asleep. No need to ask if it's fine with him since the kids are sleeping. I will just email him to tell him I'm going so he won't be surprised come Friday night.

-I changed doctors finally because I found one that will actually listen to me, even when I talk about my energy (chi) being blocked and my acupuncture treatments. I am going to see her today because I think I may need to go back on stimulants and check out my thyroid.

-After my doctor's appointment I am going to relax in a cafe and read a book!

It's not all about going out and spending money. That will only make him angrier and I will feel guilty. It's more about enjoying myself and strangely, I have been cooking better meals and I'm not doing it to get on his good side but I can see that he is enjoying the food. Additionally, I am cleaning more and organizing more. It all makes me feel good. I am also really focusing on what I'm eating. I went to Trader Joe's to buy a whole bunch of salads and dressings because they are quick and easy and the reason I gain weight is because there is never anything low-carb in my house that is quick and easy. Now there is.

I don't know if my husband and I will ever discuss our fight. But this experience has been very good for me because for once, I didn't ask him to apologize to me after he hurt my feelings. That took a lot of will power from me because I am usually too weak and need him to make me feel better even if I have to ask him to say sorry. Of course, we all know that such a requested or forced apology is a ruined-and-doesn't-really-count apology. He clearly didn't want to say sorry and I am doing what I can to accept that. Perhaps, if I treat myself to a really expensive sashimi lunch, I may get myself in a good enough mood that eventually I can accept him and forgive him for not being able to apologize when he should. Nobody's perfect. Hopefully someday he really will understand where he was wrong.

Photo: Even though I get annoyed with Kai a lot. There is no question that he is a good dad. I do tell him that. I hope he remembers that I do.

Strippers Can Not Eliminate Separation Anxiety

2010-03-17T23:46:00.007-04:00

This past weekend was one of the best I've ever had. On Friday morning, I passed my eye test for my driver's license renewal SANS glasses thanks to my LASIK surgery!!!! Then I came home and tried really hard not to burst because I knew Kai would be home with Spencer and would have to tell me how Spencer did in his preschool screening. This is also Logan's school so I have been salivating over the notion that both of my boys would be under one educational roof- you know... like typical kids. sigh....

"It's over," he said. Kai loves to create drama by taunting me.

"WHAT DO YOU MEAN?"

"He's in."

"What do you mean? What did they say?" I could so see him misunderstanding something.

"They said they are offering him a placement or a seat or uh.. whatever. I don't remember."

"How can you not remember!?!?!?!"

I called the school immediately and they confirmed it. "The moms never believe the dads," the Assistant Head of the school told me.

I could have kissed the ground but instead I kissed Spencer, the air, and jumped around my apartment for ten minutes in complete glee. Now I know that Spencer would be given the best chance he could possibly have to have a great start in his education. This school meets my criteria. They are not afraid of anyone. They are straightforward with parents too. They have kids who match Spencer's cognitive level but need just as much help as he does with other needs. The school makes classes where the kids compliment each other and they are very serious about that.

I could go on and on but I was busy packing!!!!! Yes, packing!!!!

I was on my way to a special trip to Atlantic City without my kids and husband! The news about Spencer made me even happier and excited about my trip.

I promised myself that I was going to prepare Spencer and talk to him everyday about my weekend away but I spent all that energy preparing him for his screening. So he was quite shocked that I wasn't home when he woke up at 2 am looking for me. Kai stayed up with him for 2 hours until he finally went to sleep.

I was afraid of this happening but what could I do? A good friend from high school was getting married and my very close friend, her maid of honor, decided to throw her a bachelorette party in Atlantic City. No one expected me to go but I knew this would probably be my one and only chance to get away from the family. In his 3+ years, Spencer had never spent the night without me and the first and only time Logan did was when I gave birth to Spencer in the hospital. Moreover, I had never left my husband with the kids for more than a few hours.

How would he survive the whole weekend? Would he hate me by the time I came home or would he appreciate me more? I could only find out if I left home. I didn't have a good feeling about him until the hour I left. The day before I left he was bitter and picked mini-fights with me.

Nevertheless, I had a lovely time in Atlantic City. My friends have more energy and ability to rest than I do. They stayed up later than I did and slept in longer than I did. I woke up at 7 AM couldn't believe I had slept so late. I walked around the hotel, drank tons of coffee and read a book. Of course I called home and when Spencer woke up, my husband put them both on the phone. I started crying instantly and my Blackberry was soaked with tears. I had never really had a conversation with Logan on the phone. We had never really had a conversation. I didn't know how to talk to him and so, like an idiot, I just repeated everything he said.

"Mom, I played Wii,"

"You played Wii"

"And Daddy bought a new toy for my brother."

"Daddy, bought a new toy for your brother."

"Mama, why are you keep copying me?"

I guess I can be just as socially awkward as my son. I missed them so much and late that Saturday night, while I was watching men take off their pants to very very loud music, I looked at my phone and saw that I received two voicemail messages from home within a span of five minutes. I ran out of the club and called home immediately. I wondered if Kai couldn't find something. Instead, Kai says, "Okay, Spencer, here's Mommy. Mommy is going to sing you a song."

Ah, the beauty of routine, even if it's long distance! I sang him two verses of his bedtime song, just like we do every night and then told him to drink a sip of water, just like we do every night, and then sang him one short verse of another song, the song that finishes our routine and then he went to sleep. These are all Korean songs and my children don't speak Korean but they love these cute Korean children's songs. My husband obviously can not sing them but I wonder if that was why he wouldn't go to sleep.

I stood outside the club in the cold trying to hold back the tears as I sang him his little song. I missed him so much but we all needed to do this. Do you ever feel like your youngest just owns you?

I am so glad we did our little separation. It was a perfect weekend for me. Now Kai and I are actually talking about taking a real family vacation. I am thinking Disney World right now.....which would probably be a sensory nightmare but I have YouTube to help me prepare Spencer. I also have a feeling that their diagnoses will qualify for them to skip the lines. I know some people want to make their children wait and while I could do that for Logan, I know that Spencer could really benefit from a VIP pass. If I go on vacation, I am going to go with their psychological evaluations in my hands. The more help I get, the more opportunities I have to reduce my stress and enjoy the trip myself.

Also, if you are wondering if Kai ended up hating me or appreciating me after the trip, I really don't have an answer. He said the weekend was okay and didn't complain a bit. Moreover, he didn't say anything close to, "Oh, I don't know how you do it!" I actually can't even picture him saying that.

If anything, I think he appreciated himself more after I went away. Maybe he realized that he could be with the kids alone for a long period of time. Tomorrow night, I think he is congratulating himself by going out with his coworkers which is something he never does. So while he is not necessarily appreciating me more after my absence, the fact that he is now open to talking about a vacation and going out by himself spells good results to me all around.

Some weekends can be perfect. Even the ones with first time separations, hours of tears in the middle of the night, naked sweaty men, and a stoic husband who never tells you what is on his mind (because there might not be anything on his mind at all and I have to accept that).

picture: I discovered this right before my trip to Atlantic City. Above is Logan's newest game: Tipover from ThinkFun. It's a little too hard for him but I love it because these puzzles really calm him down. Some of the most challenging things calm him down and he can just hyperfocus. Today he said he would like chess lessons when I briefly mentioned it to him.

Special Needs Preschool Admissions Can Cause Freakish Anxiety Too

2010-03-11T23:10:00.001-04:00

I have been terribly preoccupied with Spencer's preschool admissions lately. I am almost ashamed of myself for being so anxious but here I am in the throes of educationally-based craziness.

Even though so many factors are beyond my control such as someone accepting him or not, I still worry about it. Here in New York City, there are several select nursery schools for typical children that are just so incredibly difficult to have your child admitted. The process sends many upscale New York parents absolutely insane. For many, these nursery schools are apparently the first crucial step to take if you want your child to go to a good primary (private) school.

These select nursery schools were always way out of my income bracket and the frenzy that these affluent parents exhibit for such exclusive schools would bring out a bit of disdain in me. I would say to myself, these people have no idea how lucky they are to have this kind of problem. But now, I am experiencing my turning point with Spencer and feel so anxious especially after having gone through the impartial hearing process. With every step I take with Spencer, I wonder if I am anything like those parents whom I have scorned in the past.

But then again, I can't beat myself up too much. So much of the driving force of my anxiety stems from the misguided trust I placed in the people who were part of deciding where Logan should go to preschool. Now here are the crazy things that I think of when looking at a school since I am still licking my wounds from Logan having gone to five different preschools, three of them being special needs schools:

1. Will the school be truthful when they say they put a class together where the kids compliment one another in strengths and weaknesses. I have been told that often but it is not always the truth.

2. Will they be honest with me and tell me in a timely manner that they are thinking about sending him to another school or will they drop a bomb on me like one school did to Logan and let him go at their convenience without warning.

3. Will Spencer be the only verbal child class in his class? He's not like other PDD-NOS children. Will he be compared to his classmates or compared to typical children when assessing how much intervention is needed for him. It should be the latter but I have found that this doesn't always happen.

4. How much will they teach him to self-regulate on his own? Are the teachers really qualified to teach that? Not all of them are. And would the program that they use to help him behave be applicable outside of the classroom?

5. Will the school support me if I decide to take Spencer's case to an impartial hearing process like I did for Logan? I have heard cases where some schools have not. However, this is not one of those questions you ask when you apply for a school, or is it? How can this be worded gently without sounding paranoid and belligerent? So far, I have not found the answer to that.

I have also re-learned that even at the special needs preschool level, a bright child with complex behavioral needs is hard to place. So far, the best choice I could find was actually Logan's school which has a wonderful preschool in it. However the preschool is different in that I don't have to sue or get special permission from the city to have my child attend.

More importantly, I am in love with the possibility that my two special needs kids could see each other in the hallway and take comfort in knowing that his brother was just down the hall. So many families with special needs children have one child at one school and another child at another school. I'm sure that has got to be difficult. But if Spencer was accepted to his brother's school then we would be able to enjoy an integral piece of a typical child's life where siblings go to the same school.

So, it's obvious, I really want him to get there but how do you prepare a 3-year-old for an interview? Should you even prepare? Is that like cheating somehow? It's not like he's taking a math test to get in so what does one do? I suppose you really just want your child to be himself but a special needs child does not always act himself especially in new scenarios.

Since Spencer does so well in his therapeutic sessions, my worst fear was that they would see Spencer and feel that their school was too restrictive for him. Obviously that wouldn't be such terrible news but still, the romantic notion of my two sons in the same schools is so hard to beat. Additionally, I really felt Spencer was a good match for the school.

However Spencer did eventually have his interview there and it turned out that they thought Spencer needed more support than they could handle. I was so stunned and regretted all the negative things I said about him in his interview. I wanted to kick myself in the face and perhaps with more yoga practice I will be able to but for now, I could only just bang my head against the wall.

Luckily, Spencer got another chance. An impromptu observation occurred when I picked Logan up from school because he had developed a stomach flu and I had to drag Spencer along. The impromptu observation showed Spencer to contradict the earlier findings about him so he was able to be re-screened. I have never been happier about Logan being sick. He threw up in every room in the house that day but nothing could bring me down.

Now tomorrow, Spencer has another interview at this school and I am just reeling with hope and fear and excitement. I never thought I would be like this but my eye is twitching and I drank two glasses of wine which is a big deal. (I haven't drank much wine since I started yoga.)

My friend said that if I am like this for nursery school, imagine what I would be like for college. I see her point and I think about those top-of-the-line nursery schools in New York City and feel the frenzy of those parents. However, l can't help but think that my anxiety is different from theirs. Like them, I want my child to thrive one day but first............... I need to get him to a place where he can be comfortable with his body and that is the biggest difference between me and them. I am looking for a school that will get him to be comfortable with himself so he can learn as much as his mind wants to learn.

Intervening early for Spencer and getting him tons of therapy at such a young age has done wonders for him. A great nursery school would only continue that momentum especially if he didn't have to be kicked out from one of them like his big brother did.

Thanks to Logan and all the mistakes made in choosing his education (mine and others'), Spencer is truly benefiting from the resulting wisdom. However, great preschools for bright children with significant special needs are few and far between and I wouldn't be surprised if some of these placements are more competitive than the upscale nursery schools that periodically cause lots of media hoopla.

So the question is, can you prepare a child for a preschool interview? Should you even prepare them? Well, my social worker told me that if I believe that Spencer belonged in a certain school then I have to prepare him as much as possible so that he could have a "good day." In Spencer's case, that meant quelling any possibility of anxiety that he might have that would prevent him from functioning at his optimum level. I'm sure the school can imagine him at his least optimum level since they have all of his evaluations anyway.

This made sense to me. I do not know what the test is or what they will ask him, but I do know that Spencer does better when he's prepared. My social worker pointed out that our YouTube preparations of showing Spencer plane rides and beaches, really helped him prepare for our trip to Mexico. He didn't freak out once in the plane. She told me to prepare him just like that. While I can't rely on YouTube this time, I did tell him what he will be doing, how will he get there, where will his Daddy be, who he'll meet, what he'll do, when he'll reunite with his dad, the subway train they will take and what he'll get when he comes home. Everyone that works with Spencer drilled it into him today. Hopefully it will help.

Hopefully tomorrow and any other interviews he may have, Spencer will be his best Spencer-self and the evaluators will have the right information to make the best decision for them and us. I can only hope that wherever he goes, it will be a place where he'll make lots of progress and will help him find the right placement for big school when the time comes. Please wish us luck. We can certainly use it.

Photo: Here is a picture of Logan on his first day going to preschool #2 of 5. After this preschool run ended in disaster, we stopped taking "first day of school" pictures.

The Scariest Fight of My Life and Winning It!

2010-03-01T21:15:00.004-04:00

Not long ago, I got what was probably the best news I ever heard in my life. Logan had won his impartial hearing. The city would now support our decision to send him to the state-approved private school he was currently attending and would thus fully pay his tuition starting from back in September when he was first enrolled.

Those of you who follow this blog will not know what I'm talking about because the matter was under litigation and so I could not speak about it publicly. Basically, in short, last year, Kai and I decided that what the city offered to Logan as an educational placement for Kindergarten was inappropriate and so we needed to find other options.

I truly believe my panic attacks originated from worrying about where he would go to Big School so this chapter in my life is a huge factor in attempting to answer the question, "Can Mom be Calm?" I believe that for many parents of special needs children, the education issue can be a tremendous source of joy and comfort but also of heartbreak and frustration.

In Logan's last year of preschool, I started worrying about where he would go to kindergarten. I worked really hard calling everyone I could to learn about the process and to see what is out there for Logan. It was so overwhelming. There was so much to do. There was so much I didn't know and so many decisions that I had to make. Everyone was giving me different advice.

"No, you don't need a private evaluation," I heard from some. "The city will give you one."

But I also heard, "Yes, you definitely need one, here's the number to where we did ours, we paid $10,000 but it was worth every penny."

Uh, I didn't have $10,000 to spend on a private evaluation and the last time the city gave Logan a psychological evaluation had been two years prior and no one from the city ever called to schedule a new one. I was really confused.

I had to deal with decisions like should I get a psycho-educational evaluation or a neuro-psychological evaluation? What is the difference and which one is better? Should I get it at a university and pay only $700 dollars but then have to wait until the end of the semester to get it or go to a private psychologist and pay upwards of $3,000 and get it within a month. What do I ask them to figure out if they can do a good job?

Those days, I felt like I was on the phone everyday, finding ways to get the most for my money. I'd also be on the phone calling different schools (public and private) to see if they had a program that would fit Logan. I felt so much pressure and really didn't know how to find these appropriate classes for Logan. Additionally, I didn't want to wait for my meeting at the end of the school year to find out the city's suggestion. I needed to have a look-see for myself first.

The pressure didn't end there. Slowly, I came to suspect that the public school special education system would likely not have what Logan needed: appropriate academics (because of his above average IQ) and appropriate support in a small class setting. If it existed, it was truly hidden to me. Thus, I started to look at state-approved private schools. These schools will have their tuition covered by the city and state if the city agrees you should be there.

Here is where you get really scared. I am almost certain that the odds that you'd get into Harvard are better than your child matching into these schools. There are so few seats and so many children needing a spot. I prayed so hard for him to get into these schools. I put fake acceptance letters on my "vision board" where I put pinned up things that I wished for on a wall. I guess the board worked because he was offered spots in not one but two amazing schools that were both state-approved. (If you don't go to a state-approved school, you have to sue every year to get some tuition reimbursement. Ugh.) There he could get what he needed and now all we had to do was ask the city to say yes.

But alas, the city had other ideas for Logan and we found those to be very inappropriate for him. His teachers, therapists, and evaluators did too but their sage advice was not followed and the city insisted that Logan belonged in a general education kindergarten which would have no special education teacher. We knew in our hearts that he was not ready for that.

Thus, Kai and I decided that we'd have to go to court knowing full well that if we lost, we'd lose all the money we spent on our lawyer. (But if you win, you get much or all of it back.) I never imagined that I would have to spend so much money just to get an appropriate education for Logan. The bills were mounting and then we had to make another scary financial and emotional decision.

The case wasn't going to be heard until the fall and would go on into the winter so the question was..... where would Logan go to school until the judge reached a decision? Many children are usually given the option to stay in their current school and so were we and while that might have been okay for Logan, in the end, we asked ourselves, where would he go if we won? It is not as if the schools that accepted him would hold the seat for him. That is not fair or fiscally sound for the school.

We had a choice. We could pay the tuition to the school somehow and keep his seat so that if we won, he would have a place to be and his education would be uninterrupted. However, if we lost, we would lose a great deal of money and risk traumatizing Logan by taking him out of a school that "gets" him and send him to a place where he'd likely be very lost and would act out. The teachers would have no special education background either. The whole thing seemed incredulous to me. Less then 12 months before this, Logan had been kicked out of a class in which half the students were typical. He then ended up in a preschool class with a special ed teacher, two aides, and 6 other students and things were great for him. Now the city was suggesting that he be in a classroom with no special ed teacher and with 24 or more typical children. He was not ready for that. We made up our minds to fight back but how much could we do?

Kai said no way to paying the private school tuition up front even if that would be the only way he would secure his acceptance there. The thought of using all that money made me angry too but, the thought of winning this case and Logan not having a place to go was unimaginable to me. I literally couldn't picture it. What do other families do in this situation?

Well, if you have money, I gather it is a bit easier to decide to risk your money and pay the tuition until you win and get it all back. If you lost then you could appeal and continue to pay and keep your child there while you retried the hearing process.

But what about others who don't have this kind of money? What do they do? Sadly, I think many families must wait it out in their current schools (even putting five year olds in a class with three-four year olds) and if they win, they try to work something out and hopefully their child will be accepted to an appropriate school in the following school year but I'm an anxious person and there were just too many unknowns in this equation. I had to hold onto his seat as much as I could.

I told my husband that I wanted to use what little money we had to keep fighting. If we ran out while we were fighting, we would deal with it then. I told him that both our lawyer and I felt that we had a strong case. She told me that Logan's hearing request was over two times the length of her average hearing request. That is how many points we had to support Logan's case. I told him that I wanted Logan to have a great start in Big School. It's a lot of money but we were more sure to "lose" if we didn't secure his seat by placing him in the school ourselves and hope for a positive outcome.

It is never an easy decision to fight this way but that night I told Kai that I wanted to risk it because this was the only way we could actually "win," ie. Logan best secures his chance to go to an appropriate educational setting. But sadly, Kai refused to talk to me about it and I decided to keep my mouth shut and not argue, even a little. I never act unilaterally but if he continued like this, I would. I even made up my mind that if he wouldn't agree with me to use our money then I would borrow it somehow.

However, it only took one day for Kai to change his mind and agree with me to place Logan in the school that accepted him. I was grateful that I shut my mouth and just waited for him to come around.

This whole process from filing for a hearing to actually getting a decision took approximately 6 months. During this time, I had never done so much faxing, photocopying, and running around in my life. Every fax had to have a confirmation sheet. All those confirmation sheets had to be scanned and sent to my lawyer. All progress reports had to be scanned and faxed. I visited many different types of public educational settings. I took notes and talked to as many teachers as I could. I did this all by myself.

It really bugged me that I had to go this far. I always wondered, what would happen to other families who didn't have the resources I did. We are by no means wealthy but I am able to stay home, find affordable independent evaluations for Logan, talk to people and learn things, and go to a million places to get things done. It took so much time. How would a person with little resources fight? How does a working mother do this? How does a single mother do this? Would a person like my mother, an immigrant with little English know to fight or would she just accept what they were offered? Where would immigrant parents like my mom, get the money, the precious advice, the attorney if they disagreed with what they were offered? The whole process angers and still bewilders me. Does it really have to be this hard?

Luckily we won but many tears were shed along the way and many migraines happily took over my life because of this. Dealing with these officials gave me so much anxiety that I'd have a hard time breathing after doing things so simple like making a brief phone call with a secretary to arrange a meeting time. Anxiety came from other directions too.

Whenever we got bad news along the way, my husband would get so mad and then he would ask me if our lawyer anticipated any of this would happen or ask why she hadn't warned us ahead of time. I never had an answer for him and really didn't want to ask her such questions. Nevertheless, I felt very responsible and defensive since I chose her by myself. I think that was probably the biggest mistake I made. I should have dragged him with me to that meeting. He went to the first lawyer interview we had but we ended up choosing someone that I had met by myself. She had come highly recommended to me. In think he would have been less anxious and I would have felt less guilty whenever our case became more difficult had we both met her together.

In the end the lesson learned was simple but hard to execute. That is, to not be afraid and to not give up. There is no harm in asking around to see if there is something more appropriate for your child. It may possibly be out there and you just don't know about it because you don't have the right resources or no one ever bothered to tell you. Luckily for me, I had some friends to hold my hand and give me sound advice. I had great preschool teachers and therapists that confirmed what I knew about him. I also got really lucky and had an excellent neuro-psychological evaluation. You can't make good decisions unless you have good information.

Additionally, while I do not like to part with my money, I dislike more the idea of Logan in the wrong educational setting where he would invariably get in trouble everyday and end up disliking himself and have no friends. This would cause me great grief and I'm sure it would have affected his behavior at home. Moreover, I would be stressed with the phone calls and the suspensions and the constant explaining and teaching I would have to do (assuming they would listen). Putting him in an appropriate educational setting is almost the same as putting my family on an appropriate emotional footing. How can we be happy if Logan is miserable?

I am just grateful for the support I've been given throughout this time. I'm grateful to my husband for working together with me on this. I'm grateful to my lawyer for answering my anxious "what if" emails at 11:30 pm. (There were many.) I'm grateful to all the professionals in Logan's life who adeptly articulated what his needs were. In the end it all got done and while I hope I never have to do it again, at least I know now that I can live through it and sometimes we can prevail. We are truly blessed.

Photo: Summer '08 This is the summer where Logan started to be less afraid of the water and venture under the sprinklers and let his face and clothing get wet. This is also the summer when I started to understand just how difficult it is to place bright children with significant special needs. When he was asked to leave the school with the integrated class because they no longer could handle his needs, I was upset because they told me this news in the summer when the placements for preschools were basically all filled. To that, they told me not to worry because he can stay there until I find him a new school. "How is this supposed to comfort me when you just told me you can not help him?" I wondered in my head. I finally got an apology letter from the principal after I wrote a formal complaint letter. All in all, I learned a lot from getting kicked out of a special ed school. Special ed staff and teachers, as well meaning as they are, are not super-people. They can make poor judgments too. We as parents must be on top of everything always.

Underestimating My Child's Ability to Mourn

2010-02-26T23:10:00.003-04:00

Recently, a child that Logan sees on a regular basis passed away. It was completely unexpected. I am still in shock and my heart goes out to the child's parents. Everyone will miss him. I know death is a part of life and comes at different times for everyone but still this child was only six. It is so very tragic. I think about him and his parents everyday.

I have to admit that when I heard the news, one of the first thoughts that rushed to my mind was Logan. Is it normal to always think about yourself or your family first even in a situation like this? I am a bit sorry to say it but I do that all the time. I couldn't help wondering... How will Logan take it? Will he understand? Will this cause trouble for him? Will he be very sad or not even care? If he doesn't care, what will it say about him?

My husband and I both presumed that he wouldn't get it but still it took us days to tell him. I wasn't sure when was the right time but I knew that he would soon found out that his friend was missing and so I had to tell him.

What do you say to a six year old about death? Especially to a child who is already emotionally immature? Will he not "get it?" And when he does "get it" will I get to be there to comfort him? That is what upsets me the most. I want to be there if he experiences pain or sadness or fear. I guess we all do for any situation, not just mourning.

My husband actually suggested that I say that the child moved somewhere. I know that sounds really awful to some of you but this is old school Asian talk. When I think back to the old days when I was a little kid living in Korea, I am sure that my parents would have done just that. It's one of those things that people think would cause unnecessary hardship for the kids. All the adults would think the same and the only way the kids find out is if they overhear the adults and then they'll spread it among themselves.

I believe that you have to take these teaching opportunities as they come. No one will ever be ready for this kind of lesson. Additionally, I would want the news to come from me and not from a peer or another grown-up. This type of news always has the storyteller's beliefs attached to it and I want Logan to understand what his own family thinks about death even if he is not mature enough to fully comprehend all of our ideas. We have to start somewhere at sometime. To be honest, I have not solidified a lot of these ideas even for myself so this child's passing forced me to define it some more. What is really weird is that Kai and I never discuss it but he and I are more or less on the same page. I think.

Before I told Logan, I talked to him about death first. I thought it might be good to lay some groundwork before I gave him the harsh news. It just made sense to me. First make sure he knows a little about death and then break the news. Maybe it is a little like math and Logan understands math. As long we know how to add, we can add any number. If we know about death, maybe we can then understand it as it applies to someone that we know. I also did some research online to see what others do. There was no way I was going to "wing it." I definitely practiced some Parenting-by-Google here.

When I first told Logan, he didn't get it. He just couldn't believe that he wouldn't see his friend ever again. All of his comments were very interesting. For example, the day before I told him, I had spilled water on my Blackberry and followed a suggestion from a friend to put the Blackberry on some uncooked rice to help dry it. It had worked and Logan knew that and so in his innocent childlike way, he told me to put his friend on some uncooked rice when I told him that the doctors couldn't save him. I think he really meant it.

I didn't want to use the word "heaven." This was actually suggested in some advice I found online about talking to children about a death of a friend. They said "heaven" might be too difficult for children to understand. So instead I used a term that I used when his grandmother passed away when he was 2 years old. I had told him that she was "in the stars" looking down on us. This is also very abstract but at least it was something that we had discussed in the past. When I said his friend was there too, he said he will then be able to see his friend through a telescope. My heart sank. Does he not get it or does he not want to get it?

Then I just used the word "dead." I thought I needed to be more concrete. We don't use this word in the house much because like the words "shit" or "stupid," (two words I used to use very often) Logan gets excited about these words and he starts repeating them and gets himself overstimulated.

So the word "dead" didn't work that well and thus I started to tell him where I thought his friend was and what he was doing there. "He is happy and comfortable and playing a lot of Wii." This seemed to get through to him the most. Logan loves his Wii. I think it was easy for him to visualize his friend this way. Visualizing is the way to go for Logan. The next day we chatted again and this time it was starting to sink in. I could tell because he told me that his friend is a "wonderful bestest boy" as if to say his friend doesn't deserve to die. I was really proud of him. I think my husband and I underestimated our son a lot.

While I don't want my child to be in pain, I do want him to mourn his friend. And this sounds really selfish but it would have been so great if he mourned him the minute I told him because I want so much to be there for him when he starts to process it. However, Logan's psychologist said that even adults process death in stages and things hit them at different times. I guess she is right. I shouldn't hope for him to mourn right away. In some respects, it's just plain selfish of me.

It sounds horrible to say but I believe that he'll grow from this experience. I always tell him that he must be careful and not get hurt because "Mommy has only one Logan."

"If anything ever happened to you," I would warn, "then Mommy would never come out of bed because I will be too sad." Maybe he'll understand what kind of sadness I'm talking about now. I feel incredibly awful for the child's parents. What a horrible tragedy. I truly hope their pain will be eased as soon as possible. Through the passing of the joy of their life, I've been once again reminded that everyday I get to spend with my family is indeed truly a gift.

Raising Money for Special Needs Kids

2010-02-23T09:44:00.009-04:00

I think I am really itching for a life outside of my kids. For the past 2 weeks, I've been a little obsessed with raising money for Logan's school. Usually fundraising is not fun for most of us, myself included, but for some reason, I found this round of fundraising for the school to be educational, inspiring, and exciting.

It all started with contacting some book authors I know. I just wrote them an email and asked politely to donate an autographed copy of their book for our auction. There would be a live auction for big items and a silent auction for smaller ones.

I knew these writers so I felt there would be a good chance that they would say yes and they did. However, I wasn't satisfied with my "gets." But what else could I get for the auction? Who would want to give to a small school for special needs children? This was my first year raising money for the school so I ran out of ideas really fast.

One day, I had a little extra time after a doctor's appointment and went to Barnes and Noble. I love going there. It's almost like eating at a buffet. I get a dozen books and magazines that look interesting and eat with my eyes while I drink coffee or a cappuccino if I'm splurging. Sometimes I might actually buy something. This only comes after a big internal battle because I am committed to only taking books out of the library to save money.

On my way to my feeding session at the cafe, I stumbled upon a book display. It was featuring children's books about subways. Wow, I thought, "Spencer would love this. I wish I could buy them all!" At the top was Subway, illustrated by Karen Katz, a book that he made me read to him every night for months. But there were others. These books were great and then it hit me. Special needs kids love subways. I know both of my kids do. When Spencer was not yet 3, he would look at the New York City subway map hanging next to Logan's bed and try to read it, calling out the numbers and letters that named the train lines. That summer, on days we had some free time, we'd go to the train station, sit on a bench on the platform and watch the trains go by while eating a snack.

Logan did the same thing when he was younger too. We actually took him out for subway rides with no real purpose other than to ride it because he was so hyper, we didn't know what else to do with him. It definitely helped that our line was partially elevated so he had things to see while we rode the train.

What is it about trains and subways and special needs kids? I think there are a few components that strongly attracts our kids. For one, the motion is just to their taste, isn't it? It is consistent, not that smooth, bumpy enough to soothe them but not too bumpy to startle them. I think they also love the predictability of the announcements. "Stand clear of the closing doors, please." Spencer loves saying that as well as imitating the bell sound that comes after the announcement.

The maps are a whole different animal. I think that some special needs kids see maps like a girl looks at a diamond heart pendant. On one yahoogroup that I'm on, a mom was concerned that her child was a human Mapquest. I think for these kids, maps are just beautiful and fascinating. They are empowering because they help you figure out how to get somewhere and they are anxiety-reducing because they help you know where you are and then you won't get lost. At least that is why I think they like maps. Logan found the GPS feature on my Blackberry and was instantly intrigued. He immediately felt that he could find his way to Philadelphia from New York. I know that he can't right now but I was impressed that the thought of the possibilities. Either way, Logan loves his subway map. He remembers not all but many of the stations, transfer points, and other features like the colors and names of each train line.

To make a long story short, the subway display at Barnes and Nobles inspired me to raise money for my son's school in a different way. How do you raise money for special needs kids? With inspiring tearjerker stories? Maybe. By going to your friends and local businesses around the school? Yes, but you can do more. You can inform people that your special needs child is part of a group that needs and adores them or their services. It's even more effective when you are telling them something they didn't already know.

When I got home that day, I started to contact authors of subway-themed children's books and many of them wrote back to me immediately saying that they'll send me an autographed copy or copies of their books to the auction. One author who was also a painter was so moved, she said she would create a painting that might be appealing to a special needs child and donate it to Logan's school auction. How kind and inspiring but I had to move on. "More, more, more," said this greedy monster in my head.

Then I thought about how much I want Logan to learn yoga. I know it is so good for him and other children with special needs like anxiety, sensory processing disorder, ADHD, the list could probably go on but I have not read any studies on this yet. I thought these yoga instructors and yoga schools would want to know just how much the special needs child would appreciate their services. Some of them knew that yoga was good for special needs kids but still, I loved telling them about how yoga has helped me and I just know it can help other children and other moms like me learn to relax better.

To my absolute delight, some of my queries were answered with gracious generosity. I was really inspired. I kept thinking of other businesses that may not know that their product or service could be extremely helpful to a special needs child. It was not like I was asking the obvious folks, like a company that produces oral motor tools but instead I would call places that would probably like to reach out to our community but may possibly not know how. I even talked to gluten free eateries since so many special needs kids have allergies and are on the GFCF diet. In fact, two gluten-free eateries immediately said yes after I approached them. It was an awesome feeling. So far, out of 34 queries, I got 12 positive responses. I consider that pretty darn good.

Wish me luck. I'm going to keep on going.

Video: My husband suggested that we buy Spencer books about trains for his birthday and luckily I bought him one book about trains and another about subways. The subway book was a hit as you can see. Once he saw this $6 dollar book, he saw nothing else that came out of that box.

Resource List if you have subway fanatics at home:

My Subway Ride by Paul Dubois Jacobs and Jennifer Swender and illustrated by Selina Alko
The Deaf Musicians by Paul Dubois Jacobs and Jennifer Swender and illustrated by R. Gregory Christie
Subway Ride by Heather Lynne Miller and illustrated by Sue Rama
Under New York by Linda Oatman High and illustrated by Robert Rayevsky
Down in the Subway by Miriam Cohen and illustrated by Melanie Hope Greenberg
Subway by Anastasia Suen and illustrated by Karen Katz
Subways by Mary Winget

The Best Calming Yoga (at least for me)

2010-02-16T06:01:00.010-04:00

I have been doing yoga for about 2-3 weeks now. I can't believe myself. I am usually a giver-upper when it comes to exercise but this time it's different. I think it is because I don't consider it exercise but rather it's like therapy to me.

I have tried yoga on numerous occasions before. I remember my first experience. It was in a class at my gym where I went after work when I was in my twenties and was very out of shape (like now). I remember going into the class and trying to follow along. The instructor looked at me like I was the runt of the litter. He doesn't want to throw me out but clearly I was not going to make it.

That was many years ago and I've never stepped foot in a class since then and now I don't want to spend the money. I was in the library a few weeks ago and a Yoga DVD that featured a lot of stretching caught my eye. It was by Ravi Singh and Ana Brett called the Ultimate Stretch Yoga Workout.

I really want to be thin but I really want to be flexible too so I decided to give it a try and I kind of got hooked. I am not sure why but this style of yoga called Kundalini Yoga best suits me and calms me down.

It's not like any yoga that I've ever seen. There is no tree pose or downward-facing-dog here. In many ways there is a lot of resting and but also a good amount of strenuous activity - the kind that reminds you that you are very out of shape and old. But much of it is the practice of relaxation and there is a lot of stretching. The stretching hurts and feels good at the same time, much like marking a cross over a mosquito bite with your fingernail.

I had to also get used to interesting language being used by the instructors. There is a bit too much "spirit talk" for me. I don't know how else to describe it. There is also chanting and that took some time to get used to as well but I did it because they are the experts and I thought I should at least give it a shot and do the whole program.

What is Kundalini Yoga?
I am no expert but according to this page I found in About.com, Kundalini is about releasing untapped energy at the base of the spine. The focus is on breath and movement which is interesting since my panic attacks have a lot to do with my breathing. Kundalini is supposedly rather new to the west as it was introduced as late as 1969.

I like it because the breathing is mostly done through the nose so I don't have to fuss about inhaling and exhaling correctly. I also like it because a lot of the work is done with your eyes closed which adds to the relaxation and decreases distraction for me. Additionally, one of my DVDs that stars Maya Fiennes promises to detox my body. I don't know how this works but the DVD talked about how the exercises assisted your adrenal glands and my acupuncturist is always trying to fix my overworked adrenals.

Even though I am not ten pounds lighter, my body does feel better. My backaches are gone. I can bend down more easily and I do feel a bit more flexible. Additionally, I do feel very relaxed after I do it and my biggest change since starting Kundalini yoga is possibly my hair. Yes, my hair.

It may sound silly but I credit this style of yoga for finally allowing me to get up the nerve to dye my hair red. That's right, I'm a redhead now or at least a brunette with tons of red highlights. For the past ten years, I have had a box of red hair dye in my bathroom. It was always unopened. I had only tried doing it once but it didn't work because my hair is black so the red color didn't show up. I knew that I would have to lighten my hair first but that meant going to a salon and spending money and also dealing with it growing out. So this box of dye would sit in my bathroom for years, taking up space and accumulating dust and I'd never open it. Finally I would throw it out and a few months later, I would buy it again on a whim and let the process repeat.

However, this past weekend, I don't know what got into me. I just told Kai that I must dye my hair today and told him that he must watch the kids as I did it. I found a hair lightening kit in the drug store and decided to do it on my own. It took quite a bit of time and I was scared too. What if it came out terrible? I am not a hairstylist.

However, the results weren't that terrible at all. Overall, my hair is not exactly screaming, "I did this at home." Logan thinks it looks nice too. Kai didn't have a comment which likely means he couldn't care less or doesn't think it looks good but I LOVE IT! I finally finally finally jumped over this line. I know that I'll have to deal with the stage when it grows out but I will worry about that later.

Back to yoga: I am so glad I didn't give up on it. I remember a therapist told me to try it and so I tried doing it at home by watching a t.v. program but it was too hard and quite boring. I think that style was called Hatha Yoga. I guess that type of yoga is not for me.

Also, a real factor to this somewhat successful run with yoga is that I do it when I'm all alone and everyone is sleeping. I am still waking up at 3:30 am. No one bothers me at this time and I'm so grateful for it even though I get sleepy a bit here and there. I also like doing yoga after I wake up because it helps me get the kinks out of my body after I've slept for the night. I probably need a better mattress and better pillow but I have no more money so yoga will have to do the work for now.

Last pitch for yoga: I finally swam some laps in many many months of just swishing around the water with the kids. I expected to be out of breath after 2 laps as usual but I couldn't believe how strong I was! I looked at my body and all the flab was still there but still I noticed a difference in my breathing and tenacity. It's amazing that yoga can do that for you when I did no cardio or weight lifting in months. I guess like acupuncture, yoga will always remain a mystery to me. I guess I'll just have to have some faith and just keep at it.

Photo 1: Happy Lunar New Year to you all. For the Chinese (I'm Korean) this is an extremely important holiday. As a non-Chinese wife to a Chinese family, it can be a little stressful because women are the keepers of rituals and I don't know what these rituals are because I'm not Chinese! Koreans have their own rituals. My husband and I always get frustrated with each other this time of the year and no amount of yoga will change this stress. However, with each passing year, it does get better. Pictured here is Logan, Spencer, and Kai with Pork Chop dressed in a Chinese outfit. Spencer went crazy over Pork Chop. He kept laughing and if you see his teeth, you can tell he's very overstimulated. Poor Spencer. As he gets older, I can see his ability to self-regulate become increasingly challenged.

Photo 2: My new red hair in honor of Chinese New Year! Some people just wear red but I went one step further. Maybe my new red hair will bring me and my family luck this year.

Stop Wearing Sweatpants!

2010-02-11T11:23:00.001-04:00

Recently, there was some sort of casting call for a new show to be produced by Oprah and I applied to be in it. I am sure there are much more deserving people than me (it was about having dreams fulfilled) but still, I thought it was worth a try.

One of the requirements included me sending a picture and sadly, I couldn't find anything that was worth sending except for my self-makeover picture which I took many months ago.

Am I that ugly? I recently bought some clothing because Lands' End was having a sale and I needed a little happiness-via-credit card. However, when I finally got the jacket and pants in the mail, I hated them. It took me a few days to admit to myself that I hated them but I did. But here is real the question: Did I hate it because it didn't compliment my body or did I just hate myself because I figured that I wouldn't look good in anything. I think the latter is the truth since I've been overweight for a long time now.

Now that I have been doing yoga, I have become more aware of my body. The body-awareness increasing potential of yoga is probably one of the reasons why it is recommended for children with special needs since they bump and bounce all over the place.

Through yoga, at least for me, I have come to realize that my main problem is not merely weight or tight muscles or even poor body awareness. Rather, it's an overall lack of concern for my body. I am not eating well. I am not caring about my appearance. I am ignoring my growing stomach. I am not flossing and don't even talk to me about exfoliating- ha! My hair is always tied back and I dress like I am never going to go anywhere. If I ever do put on "going out" clothes, my children look at me like I'm someone else's mother. They actually pick up the skirt and stare at it as if I was wearing a kimono or something. Obviously this must stop.

But how could I change years-old habits of ignoring myself? I guess I'll do what any anxious person does. I'll write a list of the the ways that I'll increase body awareness to promote better mood and better health (and a little weight loss doesn't hurt too):

1. Put on make-up.
I stopped doing it in the summer because of all the sweating and now it is months into winter and I still haven't gotten back into it. The act of putting on make-up really raises body awareness for me. I can see my face change as I age so I don't get surprised later when I notice a dark spot or a wrinkle. Also, obviously, making myself look decent is good for the spirit, especially when I pass by a mirror in my house.

2. Stop wearing elastic pants!
I wear elastic pants every chance I get but a weight loss surgeon once told me that elastic pants are one of the reasons people don't realize that they are becoming fat. So now I've been wearing jeans as early as 8 am until the evening and I also wear a girdle but now I think it's called "Shapewear." It's not super tight but I notice a difference once I take it off and that helps me with awareness too. The girdle also helps me be aware that my digestive system is not working well because sometimes, I don't notice that I'm getting bloated. With the girdle, I know right away and eat a bunch of prunes and drinks lots of water to help my system. I also found some shapewear that creates a slimming effect like the miracle bra without the underwire, I really want to try it.

3. Wear ankle weights or weighted belts.
I tried light ankle weights for a good portion of the day and it was really okay. I felt like I might be burning calories but I was more conscious of how much walking I was doing around the house. I asked my son's OT if wearing weighted belts and other things would be okay for an adult trying to increase body awareness. After all, I do not want to add back spasm to my list of problems. He said, that with anything, you have to do a little bit at a time and increase as you go on. This is what he does for his pediatric patients when introducing weighted vests.

4. Do not read or watch T.V. when I eat.
Even though I have been home for over two years now, I am still not used to feeding myself at home since I used to buy my lunch and breakfast near my office. My problems are that I don't chew enough and I don't eat balanced meals. I don't enjoy my food or I end up enjoying too much of it. Sometimes, I am watching a good show while I'm eating and I realize that I'm done with my food but the show is still going on and to give myself the excuse to watch a little more, I will help myself to seconds. It's so stupid but I'm so guilty of this. I think now I must try to separate treat from sustenance. I'll treat myself to t.v. when I want (which will probably be never) and just eat to nourish myself. Hopefully, I will enjoy my food more this way and eat healthier.

5. Wear my hair down.
I absolutely HATE hair on my face. It has become a real sensory issue for me. When I go to the salon, I tell them that I do not want to style it in the morning and that I don't want any hair in my face. Obviously, this sensory issue (and laziness issue) has become a beauty issue now because everyday I end up having hair that looks like I am off to the gym. It would probably be okay if my hair was longer or curlier or if I had bangs but none of this is true for me. I know I can be and feel more attractive with my hair down and if I leave it down for at least an hour each day, then maybe just maybe.... I could possibly have an actual hairstyle by the end of this year! I always loved Meg Ryan's hair. This could be a goal.

6. Put on body lotion EVERYDAY and wear perfume.
I really hate doing this but I know that I need to if I am ever going to face up to the sheer size of my body. My BMI (body mass index) is 28.21 which means that I am only 1.79 points from being obese. For me, that means I'm only 10 lbs. from hanging out in the obese category. It's not hard to gain 10 lbs. I also think the perfume will help because it's another way to adorn yourself thus promoting happy body awareness (hopefully). I stopped wearing perfume a long time ago because I just didn't care anymore. Now I care but I went to Sephora today and took a look at the prices. Ohmigosh! Perfume is so expensive!

I think I could probably add more things to this list but I'll stop here or I'll surely set myself up for failure. If you have any tips for me to increase my body awareness, please feel free to send them this way.

Photo: This photo of me was taken by my friend two years ago. It was around the same time I was really starting to lose it. Spencer was very behind in his feeding skills but had just been rejected from Early Intervention to receive services. This look (no make-up, hair pulled back, stained t-shirt) has not changed much since then except that I just have more wrinkles and age spots.

Forget Him and Do My Own Thing?

2010-02-06T21:15:00.009-04:00

I don't know remember where I read this but I once read that before I got married, I should have talked to my fiance about how I wanted to raise children.

I never really did that. The most I ever did was ask him what he would do if I was working too hard and ended up ignoring the children's needs. Would he confront me? I was really disappointed when he answered me. He said he wouldn't say anything and that he would just try to manage without me. How passive and counterproductive is that? Still, I married him anyway.

It's funny to think about that now because I consult him before making most of my decisions regarding the kids. And even though he is passive to an extent, we've definitely had our share of disagreements especially about the kids and how much money we should spend on their therapy and education. When it comes to money, he's not the silent type. Thus, I do seek his approval and/or support a lot. I don't like to get him mad and I don't like it when he disapproves of something I do. You can call me a chicken or you can say that my marriage is just as important to me as my children are. I really couldn't answer that but it is what it is. I don't act unilaterally.

I even think about what he would say before spending $25 dollars on Amazon.com. I'm that ridiculous. I won't spend it if I think he won't like what I did unless I really needed it and then I know he would support my purchase decision (and if he doesn't, I won't care). However, when it comes to the kids, if he disagrees with me and says "no" to something new (and expensive) I want to try on them, then I don't do it or buy it.

Luckily for the most part, he has always come around to the things that I really felt were important and necessary like the GFCF diet, DAN! protocol, the choice of school for Logan..etc. But recently we disagreed again and for the first time, I was really tempted to go out on my own and do it anyway.

Stimulant treatment for Logan's ADHD symptoms seems to be going well but his appetite has really decreased so I have to work extra hard to get him to eat in the morning and after his meds wear off in the evening. It is really stressful however, I feel that we are stable with Logan now. He still has his bad days or moments but overall, the medication has helped him at school and at home.

Call it ambition or greed but since things were somewhat stable, I wondered if it might be time to try something new. We had largely abandoned the DAN! protocol and discontinued the osteo-manipulative medicine therapy (for different reasons). But after a recent visit to my acupuncturist, I wondered if I could take Logan to see her.

I got the idea as she told me that my adrenal glands are exhausted. I guess that makes sense for an anxious and tense person like me. According to her, my adrenal glands are in constant fight-or-flight mode and so my taxed adrenals cause problems with my other organs. For me, I get sick with indigestion and get migraines.

I kept thinking...... well.... Logan is always in a constant fight-or-flight mode... his anxiety and sensory issues make him like that so......... maybe he should try acupuncture like me?!?!?!?!? My acupuncturist already told me that she would use moxibustion and not needles on someone as young as Logan. If Logan could stand it, then maybe we could try it? It was definitely more affordable than my DAN! doctor and his vitamins and she was very closeby so I asked Kai. He has been to her as well and she helped him a lot so I thought there was a good chance he would agree.

He must have said NO about 30 times to me because I had to keep asking him. I couldn't believe he wouldn't go along with it. He said he didn't want to try anything else anymore on Logan and he said that even if it was affordable, it is still money and it adds up so he refused to go along with it. I was so disappointed. I really wanted to do it.

Coincidentally, Logan is getting another break from school soon and I thought that maybe I should take him during that time and not tell my husband about it unless it went well. It is possible that Logan would tell him but it is completely plausible that he may not.

I really wondered if I should take a chance. I must confess that I'm equally as curious how a unilateral action would affect my marriage as much as acupuncture could possibly help Logan. I still have some time to decide but right now I am abstaining from acting on my own. I know it's kind of disappointing but I guess it is because going for acupuncture right now is not that urgent and it is more about money than concern for Logan's safety with acupuncture or efficacy of treatment. I hate fighting about money. I think it is so awful when that happens within a family. I've seen it break families apart including people in my own family. It totally sucks.

So instead of embarking on a new leap of faith now, I have decided to just add yoga to my homemade enrichment program for Logan. Lately, as I wake up at 3 am, I have been doing some yoga. It helps me work out the kinks in my back after a night's sleep. I only do about thirty minutes of it but I actually really feel good after I'm done. I think it really does calm me and I don't know why it has taken me this long to give it a serious try when I have been suffering from anxiety for over a year. I did try once last year but that was a wasted effort. I think my mind wasn't into it and that particular yoga teacher's t.v. show was too hard.

Either way, I have noticed that I become so relaxed that I even get sleepy. I'm also stronger as I grunt less when I reach down in the fridge to go get milk. Once I did yoga around noon and then did some reading with Logan afterwards and I fell asleep on him as he read a book out loud.

So instead of paying for acupuncture treatment, I am going to "splurge" and buy a $15 dollar Family Yoga DVD. I had purchased yoga cards ($25) but it didn't work out so I felt guilty about spending even more money on a DVD. What if that didn't work out either, I wondered. However, I just love yoga now and must use this DVD to attempt to fill this void left by the rejection of my acupuncture idea.

I haven't given up yet. I really believe that there are merits to acupuncture that I don't fully understand but have faith that it can help. At this point, when I look for alternative treatments, I am not looking for recovery or even healing. I am looking to reduce the amount of medicine he has to take, increase his appetite, and most importantly, I just want him to be more comfortable and in control of his own body.

Furthermore, since it is largely a money issue, I am even more inspired to find a paying job which has been a big point of depression for me! There can be no better motivation than to work to pay for your child's therapy a.k.a My Next Big Idea, right? I wonder how fast I can make this happen.

Picture: Sometimes, things just don't work without Kai. Because I pumped milk for Logan for two months before he finally latched on to my breasts, I felt I needed to be fair to Spencer and do the same. Spencer took 2 1/2 months to latch on. Thus, for over 2 months, I pumped by breasts 6 times a day, every day. While it was hard on me, you can't do this on your own. The dad has to help and Kai must have thought I was crazy trying so hard to give breastmilk but he did support me on that one. If he hadn't, I would have felt awful and probably would have given up.

I Have No Right to Be Bored

2010-02-03T18:17:00.004-04:00

Being a mother of a special needs child usually means that you are beyond busy. It means that everything takes twice as long (dressing, homework, eating, conversations like "what did you do today?"). It means you spend a lot of time dealing with your child's special needs because you have to talk to teachers, therapists, government workers, doctors, etc... The work never stops until it does for some odd reason and when it happened to me, I kind of realized that I don't have much of a life.

Don't get me wrong, raising my children is very fulfilling and it was my choice to stay home but still, this month I experienced real actual boredom and it left me feeling depressed and embarrassed.

I asked myself how did I become this way? I guess the first reason would be my broken finger. I can do a lot with this injury but still, I do a lot less dishes, cooking, and cleaning. (Tragic, I know) This frees up my time somewhat and you would think that I would have no problem filling it up with something else to do but then two other things happened.

Logan came down with strep throat. Ever have a sick ADHD child? Before I started medicating Logan, sick or not, he was hyper as ever but this time, I decided to give him his ADHD medications because I thought it might actually help him listen to his own body signals telling him to rest.

I was right. He lay on the couch like a potato for days. I thought I had a different child living in my house. It was unnerving.

So rest he did but he didn't eat much and I didn't want to get sick so we didn't cuddle up so much together. So in short, he was a maintenance-free sick child.

Then in the same week, my computer crashed. It just died one day but luckily I was able to find someone trustworthy to fix it. But it took a while to get it back so with all the things that were going on (or not going on) I found myself very lost.

I thought that I would read more books but I did nothing of the sort. Reading books during the day seems too luxurious to me. Thus, instead, I ate.

I ate a lot. My friend said that I was acting as if I had quit smoking. That made a lot of sense to me. Without knowing it, I guess I go to my computer to fill the void.

I also found myself shopping more often as well. I got the overstock catalog from Lands' End and practically studied it wasting tons of time. For days, I wrestled with myself with what I "needed" vs. "wanted." I also recently found out that my Lands' End jacket would be fully refunded because the zipper broke even though I purchased it two years ago. That sent me on another tear to buy a coat but since it's hard to leave the house, I sat in front of my husband's computer for even more hours trying to find the right coat for me.

At the end of the day, I bought three coats online, only to have to return them which is a hassle too. These past two weeks, it seemed that all I did was shop and eat. I felt really ashamed and directionless because I had to think about what to do- I usually never have to think about it. There is always a billion things on my list.

Even though I don't like having a broken finger or a wiped out computer or having my child sick, this was a good experience for me. I have never been so bored in my life. It's not like I had nothing to do but there was nothing interesting to do. It made me realize that I have to have some things of my own that are productive.

While I love this blog and do find writing in it productive, the bottom line is that I do need to earn some money. This is what I really mean about productive. Spencer will go to preschool soon and that will mean I will have about 6-7 hours by myself at home. I want to be off and running with some sort of career move by the time he starts school. I just borrowed a book from the library to help me. I have to decide what I want to do and then just go for it. I don't know why it is so scary to me but the alternative of being bored and being continuously short-on-cash is not fun either.

One good thing did come from my vacation from my busy life. I started doing some yoga stretching exercises in the morning while everyone is still sleeping in the house. (yes, I still wake up at 3 am) Another library find, this DVD focused more on stretching than cardio and for me, I prefer that because I really want to be flexible. For some reason, when I can't touch my toes, I feel unbelievably pathetic like I failed gym class in high school.

Someday I am just going to have to get off my duff and start this new chapter of my life. I only wish I wasn't so afraid of failure.

picture: This battle with strep throat for Logan was no joke. I can't believe he had to use a nebulizer (pictured). Originally we used some ridiculous tube thing but nothing works better than a nebulizer. My friend lent it to me. She's an angel. Thanks to her, Logan stopped coughing within two days. He finally went back to school today and I actually feel more normal today than ever.

Teenage Babysitters for Special Needs Children? Can it Work?

2010-01-29T04:51:00.019-04:00

My friend Penny recently wrote an info-packed blog post about the interventions she has tried to make homework successful. I totally know how she feels. We have the same issues here. When do you do homework? Where do you do it? Where does he sit? How do you handle fine motor work? How do you do it without losing your mind?

The answers to these questions are still a work in progress with Logan but we have the added complication of our second special needs child, Spencer, who is now 3.

He just won't leave us alone. He says he wants to do homework too but won't do it once I give him some "homework" to do. Then I'll bring him back down to the floor and then soon he is climbing on top of me or doing something else disruptive. This is not good for our already distractable Logan. Thus for months, we did homework at night while my husband was home to play with Spencer but I realized that night-time was the worst time for Logan to do work. The lateness of the hour gives you little choice for the when-you-finish-your-work-incentives since he has to go to bed and also like Penny's Luke, the meds wear off by then so you get less done at that hour.

For us, we decided to do two things. First, I moved homework time to the hour that I have when Logan is home alone with me before Spencer comes home from his baby preschool. This is tough because no one wants to do homework as soon as they come home but the incentive for Logan is that he can play with Spencer without having to do any homework as soon as Spencer arrives. So far, the plan is working.

However this is not enough for me. I want Logan to do more than 45 minutes worth of homework especially during the colder months when we can't go outside. Call me crazy for wanting more from an ADHD kid but I do. I want to work on the many activities suggested to us from his teachers and therapists and sometimes that requires quiet one-on-one time but again, Spencer is in the picture too so what to do?

Ever since Logan was four, I have tried to hire teenage babysitters to help out in our home. It has always been disastrous. The ones I hired were too young and I also didn't know any better and wasn't willing to spend hardly any money. These youngsters did not know how to handle Logan and Spencer was so little then, that he refused to be with anyone but me. However, in my two-year quest to find inexpensive and more energetic help for my kids, I managed to meet a nice young high school junior in my building elevator. She said hello to Spencer which piqued my attention because teens don't usually talk to toddlers. I immediately asked her if she babysat. She said no but that she wanted to and soon I found out that she volunteered at the local Catholic school twice a week with preschool children.

Uh, okay, you're hired.

I interviewed her and loved her immediately. She did not care that the kids had special needs. I suppose in her eyes, their special needs did not really stand out. My boys just look really hyper and silly at first glance. However, I could tell that she had a lot of inner-confidence and possessed genuine earnest to do a good job. That is all I can ask from a sixteen-year old. And so she was hired but little did I realize how helpful she would become.

She became the answer to my Spencer problem because Spencer absolutely adored her. This was a real surprise because Spencer is so attached to me but when he finds out that Vivienne (real name withheld because she's a minor) is coming, he stands by the door to wait for her. And then when he sees her, he practically jumps on top of her so excited to play. I also called her to help me during the recent winter break as I was still recovering from my broken finger and really wanted the extra help in the house. She was there to play with the kids and I could relax a bit more.

Having a teenage babysitter is helpful in so many ways, especially when they live very close to your home. The first reason is that it is okay for them not to be so grown-up around your kids. I don't believe that they have to be as strict or as consistent as me. They can be silly with my kids and it's sort of okay because they are young too. I think my kids sense that. There are silly games that they'll initiate only with Vivienne.

Moreover, because she is young and lives nearby. I do not worry if she babysits in the evening and goes home late at night. I know that I can make sure she is safe and that is important to me. Additionally, I don't have to hire her for big chunks of hours because she lives so close. She has worked for as little as 1 - 1.5 hours for me on a school day and it's been fine for both of us. It also doesn't cost that much because she is only watching one child usually.

That one hour in the afternoon on a school day is exactly the time I need to work on a solid enrichment effort with Logan. Right now I'm doing it just twice a week and it is working out okay. Because I'm paying for her time, I take it more seriously too and I get an organized lesson plan ready for that hour. I give her some advice for what she can do with Spencer as well and I've found that she is good with helping Spencer with pretend play, an area in which he needs to improve. So that one hour is a win-win for us all. One day, I am going to ask her to sit in on a session with Spencer's ABA therapist so that she can watch a professional working with Spencer.

Most importantly, because the help is inexpensive but effective, I am calmer and I can be more effective too. My kids are a handful and getting that extra help on days when I have a broken finger, feel overwhelmed or just need from someone to watch Spencer while I take Logan to a swim lesson (I used to take both of them but my finger is still broken and can not get wet), then Vivienne is the answer to our special needs family.

It is not all roses however, don't get me wrong. I have to be observant of how her relationship with my children progresses. Vivienne recently helped me with Logan's birthday party as the main caregiver for Spencer. After a couple of hours , I saw her face and I could tell Spencer was frustrating her. She seemed so perplexed that he would not listen. Poor thing! Spencer's angel face can be so misleading. I had to repeatedly remind her that she was the boss and that he was manipulating her but that she had to watch over his safety no matter what. In the end, she came out alive but it was an important lesson for both of us. I thought she was going to quit working with our family that day but she is still with us. Phew!

I am so glad that I met her and so happy that she won't be going off to college for another year and a half (another factor to consider). I always felt like I should find a young person to help me and all this time, she lived just a few floors below me. Soon, she will even be taking a special needs babysitting class at the JCC. I think this is the coolest program. The teens become certified in CPR and first aid but more importantly, they'll learn about dealing with allergies, sensory issues, finding out about which behavior tactics works for a child..... all that good stuff that average teen sitters don't usually think about.

I found out that there was a small fee to enter the program and I insisted on paying for it as long as her mother was comfortable with that. I feel like a good employer investing in my great employee. I am a little scared that I won't access as much of her time once she becomes certified because she'll be the only person in my neighborhood to have completed this program and my big mouth will likely make sure people get to know her. However, I love watching young people grow professionally so hopefully that feeling will curb any jealousies I have when other parents start hiring her. My family has always been blessed with great people helping us and she is especially important because of her unique big sister-like status. She is huge piece to our little family puzzle and now I can't imagine our family without her.

Photo 1 and 2: This winter, I've seen my boys grow up and change into two brothers who can actually play together. This means they need time alone, no park, no babysitter, and time without mom hovering too. I left them alone for 20 minutes and came back to see that Logan had built Strawz mazes for his brother and himself. Spencer actually really needs this oral motor work so I was extra happy to see it. I took pictures immediately to communicate to Logan how much I liked this generous leader-like behavior. I use my camera frequently for this purpose because actions sometimes speak louder than verbal praise.

Why Waking Up at 3:30 AM is Good

2010-01-25T12:43:00.005-04:00

This past month has been real madness. With a broken finger, I managed to bake 18 cupcakes and make homemade frosting. The next day I had surgery and hours after that I served those cupcakes to Logan's friends in school. Then a few days later I threw an ice skating birthday party for him while still groggy from vicodin. People said I was a super mom but really, these were just things on a schedule I couldn't change.

Right after the birthday party I came down with serious migraines (probably from the vicodin) and just as the migraines went away, I found out that my finger had become infected. So then I had to go on constipation-causing antibiotics which also sent me back to migraine country. I don't know anyone who gets migraines because of digestion issues but I do.

The only person who helped me feel better was my acupuncturist. I could find no relief through any medication. I don't know what she does but I really wish I had enough money to see her every week just to keep my body in balance. I have a feeling she could even help Logan too.

I definitely know I am better because I am back to waking up at 4 AM again. I used to hate waking up at this hour. Most of the time, it was caused by Spencer waking up and not going back to sleep. I would try to play with him and keep him safe and entertained while I stole minutes of sleep here and there. It was hell.

But now waking up at 4 AM all on my own is a totally wonderful experience. I am basically doing the things I would be doing after they fall asleep except I have tons more energy because I have already slept a few hours. Even though I have a couple of hours everyday while both children are at school, that time is reserved for grocery shopping, eating lunch and dawdling, making dinner, and/or running errands, and feeling sorry for myself because my finger is broken. I hardly feel good about myself during this time. I also never exercise during this time because I feel bad exercising when I could be using the time to make dinner and run errands. I always find excuses not to exercise.

However, when you go to sleep early and wake up at 3 or 4 am, everything is different. The fatigue you have goes away quickly and all you want to do is lie down and stretch your body. This is hardly something I want to do at night or in the middle of the day when the kids are at school. But early in the morning, stretching exercises and possibly even yoga (in the future) make sense to me.

I also get a chance to tidy up the house a bit, pack Logan's lunch without hurrying, choose and pre-prepare his breakfast, eat my own breakfast, and look at my to-do list for the day or make one if I haven't already. I drink coffee while I'm sitting and finish the cup while the coffee is still hot which rarely ever happens. I also may start writing a post in this blog and catch up on emails.

I also like it because there is a deadline. I still think I have ADHD because I love deadlines. My deadline in the morning is when I have to wake Logan for school. Until then, I do as much as I can and I work faster because I feel the pressure. If I were to attempt the same things at night after the kids went to bed, I would likely feel overwhelmed with fatigue and not do as much but stay up late anyway because I never go to sleep at the same time.

I have also found that I want to eat a smaller breakfast at this time because it is still so dark and I become very sleepy on a full stomach. Thus for the sake of being more productive (and thin), I end up having a small breakfast, peacefully and mindfully.

I am not sure if I'm playing mindgames with myself but there is also something to be said for trying to get things done while everyone is asleep. I think I find comfort knowing that everyone I love is at home and yet not needing anything from me. This is "me time."

I used to do my homework at 11 PM when I was in high school for the same reason. I was not alone but I had silence and no distractions. This reminds me of another plus for going to sleep early and waking up early. You must be quiet. That means that I can not do loud things like cook, empty the dishwasher, or call anyone (because no one is up) and so this usually means I can only do things for myself like read, write, stretch, eat, and watch dramas online.

I don't know how long I'll keep up this practice but I hope I can carry it out for a long time. I am not sure why but starting the day on my own terms instead of waking up when my kids wake up really helps me find the calm I need to have a good morning.

Picture 1: Two birthdays in one month meant three batches of cupcakes and two batches of icing. Here is Spencer filling cupcake liners with gluten-free batter. His ABA therapist Christa (pictured) helps and encourages him. Unfortunately, that batch (not Spencer's fault) came out so bad. I had to use a mix from Cherrybrook Kitchen.

Picture 2: There is something good that can come out of breaking your bones. The cool pictures are very educational for the kids. Still, it is really hard to recover from a break when you have children who are hyper. They have knocked into my broken finger almost daily.

Skating Parties: Perfect for Special Needs Kids

2010-01-20T14:16:00.000-04:00

Early in the new year, this family achieved a major "first."

We recently threw the first birthday party that Logan has ever had since he turned one. I don't know when it was but perhaps around the time he turned three, we realized that he didn't have many friends. Additionally, whatever parties he attended before then, he appeared to want to leave and didn't want to do the activities like the other children. As he got older, less and less people asked us to meet for playdates and worse, we moved when he was 2.5 yrs old and we didn't get to know my neighboring families until the following year after I quit my job to take care of the kids.

Still even though we became more social as a family, Logan still had a hard time making friends and parents sometimes looked worried when their child was near him in the playground. I remember there was a mom who was attending a birthday party of a child who lived my building. We all knew each other and she immediately assumed we were invited but I had no idea that there even was a party. She asked me what apartment number was the birthday boy's apartment was and I pointed to the family's buzzer. I saw the presents in the back of her stroller and I realized what was going on. During the year prior around that time, we were invited to that boy's party but this time we had no such luck. I was sad but I couldn't blame her. A party is stressful in and of itself. Why invite a child who you think will definitely misbehave? The kids rarely played together anyway so that could have also been a reason to not invite him.

I think I chose this year to throw a party since Logan started attending his current school where they really foster a community spirit between the students as well as the parents. Now I felt confident that if he were to have a birthday party, someone may actually show up.

But I live in New York City and throwing a birthday party for a child in this town is really expensive. If they are affordable then they are really not made for the special needs child and their special needs guests. Clowns, princess parties, martial arts parties, whatever.... these do not work for my kids because they assume a larger attention span and more patience. We need our parties to be active, we need to be captivated, we need small numbers, we need extra grown-ups, we need our own space... we need a lot.

I decided I couldn't do anything that could possibly be affordable and good for my child and his special needs classmates until I started taking him ice skating at a place called the City Ice Pavilion. One day, it just dawned on me that an ice skating party would be just the right thing for us. The rink we frequented was affordable and the people were extremely kind to us. Moreover, for a small fee, they offered a lesson to my party and blocked off a part of the rink for us and gave us our own heated tent. All I had to do was make sure the party stayed small so that the kids could have a lower student teacher ratio. Since Logan doesn't have too many friends, this was not hard to do.

The kids were so excited. Many of them had never been on the ice before and none had ever received a skating lesson. The parents were delighted and on some of the moms, I could actually see their happiness on their faces as their children laughed each time they fell and cheerfully got back up before skating 3 more yards and then falling again.

From a sensory perspective, I think the weight of the ice skates sort of decreases the need to be hyperactive and run around everywhere. So thus when they weren't skating, they weren't running around making their parents crazy. They talked to each other, came back to our tent and ate or drank juice, played with the toy vending machines, and some even went back to skate.

I was surprised a bit that Logan didn't spend that much time in his tent. I think he was overwhelmed because he knew this was all for him. I don't think he skated that much either, but I was happy to see what I wanted to see the most from that day. Logan finally had friends.

Ice skating truly is a great special needs sport. In a way, it is very similar to swimming because it requires so much from your body and many kids are inspired to just keep on skating irregardless of how many times they fall. My son's swim coach also said that you build a bond when you are in the water because the child is totally dependent on the adult holding her up and ice skating is very similar to that. Parents would hold their child's hands in the beginning until the child was ready to let go. For me, I get a thrill when I see my kids skate with or without me.

Almost all of the parents told me that the skating was a great idea. I suppose it really was because it isn't the first thing that comes up to parents' minds when you think about planning a birthday party but for some special needs kids, I think it makes a lot of sense. In our case, we lucked out like crazy because the rink sent us scores of instructors (for free) for our kids. I was completely surprised. It was like a Christmas movie with a plot about how a special needs family had been denied birthday parties for so long until Santa brought them the best party that was the envy of the whole town.

I think the extra instructors came because I informed them that my kid and his friends had special needs and really this rink showed us extreme kindness and generosity. With all the attention, our family felt like VIPs and as a special needs parent, I couldn't be more grateful since we always have to pay more to get our children to receive appropriate instruction.

Once in a while I think we all luck out this way. Some people are just darn nice to our children. I wonder if the smiles of our children touch these instructors differently than the smiles of typical children do. I wouldn't be surprised if they did because we all have to work a lot harder for those smiles and I think you know what I mean.

Photo 1: Logan's friend Theo and his mom Elyse laugh on the ice as Theo takes some tips from Augustine, an awesome skate instructor.

Photo 2: The birthday boy sort of kept to himself on ice but this instructor tried hard to get him to skate with him.

Advocating for Yourself to Your Own Family

2010-01-13T09:51:00.011-04:00

Since I broke my finger on Christmas Eve, things have been a little tough. However, things really changed when I went to the hand specialist's office last week and he told me that I had to have surgery right away because my nail bed had become damaged on top of already having a broken finger. If I didn't have the surgery, I could grow back two nails on that one finger or possibly none! YUCKKKKKK! Why? It was such a tiny break! How did I even get here?

It's been a journey and although I have a broken finger, I have been able to write but somehow I couldn't find the right words to say anything that was on my mind and thus the silence on this blog for the past two weeks. I guess I was feeling one thing one day and another the next day and then after my surgery last week, I fell sick from the side effects of the painkillers so I couldn't write at all. That was when I hit rock-bottom with illness and as I remove myself from a digestion hell laced with eye-shutting migraines, I can see a bit more clearly now and things have certainly been interesting.

The first interesting tidbit is why I even went to see a hand specialist in the first place. The urgent care center told me that I didn't need one but I wanted to go just for safe measure. However, it was very difficult to find a surgeon willing to see me on such short notice between Christmas and New Year's so I spent much of the day on the phone calling different offices. My husband was probably already annoyed with me because he had taken some days off of work to "help me" during the kids' vacation from school but never expected to do so much of the work since I had a broken finger. However, the hours I spent of the phone got him really angry because he thought I was making something out of nothing and called me a hypochondriac.

I was deflated. Maybe I was being ridiculous because I am an anxious person? I did however, find one office to agree to see me while my husband was still off but they wanted the x-rays. To my surprise, the urgent care center that I went to refused to give them to me when I called to ask for them. They said they would give me just a photocopy. Perhaps this is a sneaky practice employed by urgent care centers to get patients to do follow-up visits. I do not know but it was all the reason I needed to yell at my husband and tell him that they were not to be trusted and that I was right to want to see a surgeon.

I am not always right but I was really really right on this one. My friends had urged me to see one too. One friend said that if the tables were turned, my husband would see a surgeon too but this is not correct, I told her. My husband never does anything until it's on fire. He is not prevention-oriented when it comes to healthcare. This is why I schedule his regular check-ups now like he's my third child.

Anyway, I suppose the urgent care center might have eventually told me to see a surgeon because my nail bed had been damaged which could have caused an infection and deformed nail growth. My surgeon said that it was good that I came early because the longer you wait the results would be less cosmetically pleasing, and while I am no where nearly good at taking care of my appearance, I do not want monster nails.

Strangely the most important lesson that I've learned through this process isn't about not trusting urgent care centers but rather, how to advocate for myself in my own house. Having had an injury that required me to do less of everything causes a strain on all the relationships I have in this family, especially with my husband. It is a major struggle but I have to make it clear that I just can not do certain things and that I need to rest. Not surprisingly, the first person I must convince the most is me. And I have to do it everyday.

I also know that it is very important is to communicate with everyone what is going on with me. Thus, when I went to the surgeon's office yesterday and they removed the bandages, I took a picture (will not show you this) of my wonderfully discolored skin, dried up blood, and deep black creepy stitches and immediately emailed them to my husband while he was at work. This way I get his best attention.

I hoped that this will help him see why he needed to pull the extra weight around the house. I also showed him how I was right to see a surgeon because my finger looked like it was healing well, cosmetically too! I also communicated to him what was going on with me in the least whiny fashion as possible. The surgeon said my finger looked good but that it was infected and that I would have to be on antibiotics. Translation to husband: You better help me out more.

I think the extra communication with visuals helped because that night, he helped a lot without me asking him to do anything. He just kept looking for things to do (not hard) and the kids got to bed on time. It also helped that I called my new teenage babysitter to help me with the kids before he came home so that she could watch Spencer while I did some homework with Logan, thus one less nighttime duty we would have to worry about. I plan to call her to help me as many times as possible while my finger is healing.

I also tried to communicate my extra needs to my six-year-old, Logan. I showed him the picture of my healing finger, hoping it would help him understand to be more careful around me but his impulsivity still gets the better of him. He just simply can not be more careful around me and my finger but I guess I can print out a picture and show it to him. I will also try to praise any careful behavior he has around my finger.

I have also decided that I need aids to help me keep my commitment to take it easy so I got a couple of books from the library and I promised myself I'd stretch more. I would go to the gym too but I don't think I'm supposed to do that. Anyway, my Get-Out-of-Cooking/Dishwashing Card will not last forever. I may as well make it productive and enjoyable.

Picture: Here I am waiting for surgery. I took this myself to remember how I felt that morning. The kids had woken up extra early that day but somehow we got them back to sleep and I was able to steal away early in the morning without too much chaos. I felt liberated when I left. People were now taking care of me and then I felt like a child. I couldn't stop talking and thanking everyone. It felt and still feels very awkward when people help me but I have to get used to it. On the day of the surgery, I asked a total stranger to zip up my sweater. I should have been home relaxing and not out asking strangers to zip me but I had two previously made appointments that I couldn't cancel and so even though I left home at 5 in the morning for surgery, I didn't get home until 7 PM that night. If I do things like this, I can't blame my husband too much for expecting more work from me.

Photo 2: Me at a school event with Logan a few hours after surgery. I look like I have a broken arm but it's just a finger with my arm in a sling to keep the finger elevated. It was a tough day but I survived. I hope this never happens to me/us again. I know I have a special needs family and perhaps that might make me more accident prone but as some of you may know, having a special needs child when you are not 100% can be really really trying. I am going to try to be more careful from now on.

End of the Year Gratitude

2009-12-31T03:23:00.004-04:00

I haven't done this in a long time but it seems fitting to do this now since it is the end of the year. The truth is despite all the crazy things that have happened like my finger breaking, I am doing better now than when I started this blog a year ago in December.

Twelve months ago, I wondered if happiness came in a pill. I wondered if I could survive without them at all. When they worked, I thought everyone around me should have one too. It is silly but what I do know is that the pills are helping me parent my children, be a better partner to my husband, and most importantly help me center myself so that I can accomplish whatever I need to do. However, to be sure, happiness does not come in a pill or in a glass of red but it can help you get through a tough day.

Anyway, here is my gratitude list. I am ashamed to have not done it in so long. I want to bring good fortune to my family and friends for many years to come and the best way that I know how is to be grateful for what I have now.

1. I am grateful that I started Logan on medication. It is not perfect. It gives him a bad temper sometimes but still I see him more at peace than ever before. He is able to participate more in his own life now and while he is so young, everyday counts so I am happy we've started this process.

2. I am grateful that Logan is in a wonderful school. I know a lot of children with ADHD go to school in a general education setting but this wasn't appropriate for him this year. Maybe he has super-ADHD? Is that possible? Anyway, this school is loving and at the same time extremely competent. We were lucky that they accepted him. I say "we" and not just Logan because a good school for him benefits our whole family.

3. When Logan was born, I looked at his face and couldn't believe that I could love another child as much as him but then we had Spencer and he just brings so much joy into our lives. (he is still a royal pain in many ways, don't get me wrong). This year, I am grateful that Spencer is making his own sentences and that he has a competent enough therapist to work on his issues so we can understand what the heck he is trying to say.

4. I am also grateful that Spencer is doing better the second time around for potty training. He still shows signs of anxiety but he actually peed in a toilet other than at school or at home yesterday and that was a huge accomplishment.

5. Let me not forget my life partner in this list. I frequently make this mistake of forgetting to be grateful for him first. He is my opposite which I'm happy about but still it makes us argue and yet, he does listen to me and supports me for those really important things that require us to have a little faith and hope. When I try to convince Kai that we need to do something, I can never guarantee that it will work, like the DAN! protocol, osteomanipulative medicine, non-stimulants, stimulants, swimming... but when we decide to do it, we decide together.

6. This year I have accepted that I am forgetful and disorganized and it has led me to make decisions that have improved my functionality. I bought a blackberry that has really made me so much more efficient. I even bought a different type of birth control (once-monthly) because it was so obvious that I could not remember to take those little pills everyday even though they are the cheapest option.

7. I am grateful this year for my friends both new and old. I couldn't believe how many well-wishes I received about my broken finger. I am especially grateful this year for the friends that I have made in my neighborhood and in Logan's school. My friendships breathes life into a part of me that is neglected and not growing on its own sometimes. They help me cultivate my identity beyond my role as a mother.

8. I am grateful for my parents and father-in-law for still being alive and helping us in whatever way they can. My mom works a lot and can not come visit often but sends me food in a cab from her restaurant whenever I know I'm going to have a tough week. Additionally, my dad who is the epitome of the old school Korean man babysits Spencer for me all the time and washes the dishes, makes rice, and even changes Spencer's diaper. People do change.

9. I am especially grateful for my brother and new sister-in-law. They have given a new sense of family to my children. My children feel that they are loved by them and look forward to seeing them whenever possible.

10. I am grateful for all the programs that help children like ours afford things that they need. This year, I have been crazy about applying for aid and so far have received almost $1,500 for goods and services for Spencer. It is fair to note that Logan's diagnosis of ADHD qualifies for nothing which is sad but still that $1500 has paid for Spencer's swim lessons, weighted blankets, toys for pretend play, and other great things.

11. While Spencer has wonderful therapists that come to our home (and I'm so grateful for them), I am grateful that he started attending a short session preschool this fall. It was really hard to let go but I'm so glad I did. The different people and different environment really gave a new perspective on his abilities and the things that still challenge him. I'm also grateful for his swim instructor, Michael Jackson (Logan's too). He's the first teacher from the general community that has made any progress with my children.

12. Lastly, I am happy for this blog. I am surprised that I have kept it going this long but there is always something to say and I'm incredibly grateful for the people who have been listening. Thank you for validating my thoughts and ideas whether you agreed with them or not. One of my primal wishes is just to be heard and to be able to share and you have allowed me to do that.

I wish everyone in the coming new year, lots of happiness and money, therapeutic and educational advancement, weight loss or gain- whichever you prefer, and good physical and mental health overall.

photo: Here are four things I'm grateful for. The first three are obvious but this pool and gym center we attend has been extremely wonderful to our family. The administrator is great with getting us receipts to help us with reimbursement and he also gives us a separate locker room to change to help keep our boys safe. Their swim instructor is amazing with disabled children and we are not charged a penny more for our extra needs. If anything, we have only received more love and compassion because of them.