Tuesday, December 21, 2010

I Am Still Here and Still Have Something to Say

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.

Thursday, November 4, 2010

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

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.

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.

Thursday, October 28, 2010

Mom Sucks at Transition Too

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?

Monday, September 13, 2010

How I Survived 4 Weeks of No School

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.

Wednesday, August 4, 2010

Is Change Really that Good?

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?

Thursday, July 29, 2010

Sick of Worrying Myself Sick

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.

Wednesday, July 14, 2010

Do-it-Yourself Therapy: Fun but Distracting

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.

Monday, July 5, 2010

Disney with Disabilities? Can it be Done?

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.


Friday, June 18, 2010

Play Therapy

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.

Thursday, June 10, 2010

New Villains to Vanquish

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.

Wednesday, May 26, 2010

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

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!