Tuesday, June 30, 2009
If you have been following this blog then you will know how I feel about school vacations. I kind of dread them. When it is over, I feel great relief. I know it's horrible to say but there is a lot of truth to it.
The vacations are hard because we are basically going out of routine and doing something new. With new things, the therapists in my children's lives say two things that sort of drive me crazy:
1- They can not stay in routine all the time. That is not life. You have to give them a chance to experience new things.
2- They become overstimulated very easily. You have to ease them into things. Talk to them about what will happen (days before if possible) and this will reduce anxiety and negative responses.
I have my screw-ups somewhere between 1 and 2.
We are only halfway into this vacation (Summer school for Logan starts next week) but already I've done a good deal of sweating and stressing.
1. On the day of Logan's last day of school, Spencer had no morning therapy sessions and so we went out for a walk. I had only my wallet and phone, no diapers, food.... nothing. I spontaneously called a friend nearby to see if she could do a playdate and she said yes! Hooray! I then tried to hop on the subway but Spencer started to panic. He clung to me the whole entire way there. I had to carry him up the stairs, hold him in the train, carry him from the train station to my friends house and aside from my friend's apartment, his feet did not touch the pavement until we were three blocks from my apartment. What in the world is this child afraid of? He had been on the subway before but he was always in a stroller. Would it have helped if I said, "Spencer, we are going to my friend's house and we are getting on the subway," one minute before we walked up the stairs to the subway? How can we be spontaneous without panic and dismay?
2. I was invited to a playdate with other children on a small trip to an animal/environmental center with both of my kids. I never go to any museum or center or any place without my husband. We each take one child and we always avoid sessions where teachers are asking children to sit and listen but since the petting of animals was involved, I figured I should give my kids the chance but boy WAS THAT HARD. Seriously, Spencer and Logan ARE the ADHD Brothers! It's not a joke anymore. If the boys were not actively engaged in touching an animal, they would just get up and walk away and look for something to touch or play with. Meanwhile I have to listen to others saying, "Please don't let him touch that," or "Oh no, stay here, don't leave the room."
3. I also took them to a park with the group and as soon as we got there, the group sat down to eat lunch. My kids went straight to the playground. They were not interested in food and Spencer was not keen on hanging out on the grass anyway. Okay, fine, don't eat... whatever... But then, there it was, the evil monster named Overstimulation, came and started dancing circles around me and my kids. Logan became more hyper than usual and would barely follow any adult direction. I could feel my face crinkling more and more as I tried to give my kids a chance to step out of routine and play in an unfamiliar but fun playground. Wasn't this the "good mom" thing to do?
And then it happened: while Spencer was trying to climb a water fountain (I was standing right next to him), I started yelling, "Logan, don't kick the ball that way. (at other children- not maliciously- but still) Bring back the ball...." And I turned around and saw Spencer's head diving straight to the ground. He was straddling the water fountain, lost his balance, and then fell, head first, pretty much in a complete vertical line. I almost died. I had an ice pack and started pressing it on to the bump on his head while he was screaming. And just to pour salt into my wounds, someone came up to me while Spencer was still crying his eyes out and told me that Logan had broken another child's toy. Oh NOOOOOO!!!!!!! I found the child's mom, apologized, and abruptly left my group.
I take full responsibility for what happened. I know I was supposed to have a little help with Logan at the group outing but still, I should have listened to my gut and my gut told me that I should not go to that park because I might not be able to keep both of them safe or at least in-line. I could have gone straight home after the animal-petting experience but I told myself that I should stop being such a party-pooper. But I should have been the pooper. Then I wouldn't worry the whole day about Spencer having a concussion.
Believe it or not, something good came out of the horrid park experience. When we left the park, I was a little surprised to hear Logan say, "Mom, I'm glad we are going home." So there it was... he knew the Overstimulation Monster was there too. He just doesn't know how to recognize it like I do. I told one of Spencer's therapists what Logan had said and she gave me a great piece of advice. She said I should talk to Logan about having felt this way and give the feeling a name. That way, when he's overstimulated again, he can recognize it, vocalize it, and get help before he gets to a point where we lose him and need leave the scene to bring him back to earth. I love this idea! I hope we can pull it off.
With all these little disasters that happen along the way, I guess there is a lot for me to learn during school vacations. I won't list them all except for my favorite one: My kids may be afraid of automatic toilets and water sprinklers but will have no problem sticking their naked little fingers in cages of birds and bunnies and even lay down next to a garden snake and have some fun. (pictured above with Spencer) They seriously like animals and have no fear at all. The ADHD Brothers are something else.
Sunday, June 28, 2009
A few months ago, Barbara Levine won this book in a contest that asked Can Mom Be Calm? readers to share their marital advice. With her humble and generous spirit, Barbara graciously accepted my invitation to write a review of one of the few if not the only book on the market that discusses marital issues as it relates to raising special needs children. Thanks Barbara for sharing your valuable insight! – Jenn
Book Review by Barbara Levine
If ever there is a book that validates the stresses and strains that we all feel raising special needs children, Laura E. Marshak, PhD. and Fran Pollock Prezant, M.Ed., CCC-SLP, in their book Married With Special Needs Children: A Couples’ Guide to Keeping Connected have done exactly that. They validate what we all know to be true – raising special needs children takes lots of time, energy and definitely makes it necessary to work harder on our marriages/relationships. The good news is this: With hard work and a conscious effort, our relationships can thrive! So will our kids. It’s all in our perspective about the situations we’re in.
When we first learn that our dear children have challenges, our world stops for awhile. The authors really emphasize that we all need to allow ourselves to go through the grieving process to deal with the fact that our children have differences that require special help to allow them to adapt to the world they live in. This grieving time can last as much as two or more years. The confounding factor is that you and your partner are probably going to cope with it all in different ways and be at different places during the process of grieving.
Again, the good news is that this is NOT unusual nor is it bad. The work we have to do is to be able to realize that even though our journey of grieving may be different; we can still share that journey with our partners. The biggest point I learned from the authors is that each of us has to be willing to adapt to which stage of grieving we are at and our partner is at so we can be supportive for each other.
Another message: Compromise, compromise, compromise! Furthermore, the authors advise you not to feel critical of yourself if you decide to seek therapy in order to get things on the right track.
Our kids with special needs require a lot of our support and energy. Sometimes we can then lose sight of what the center of our marriage has to be – our partner first, then our child. That outlook keeps our marriage centered. I found the advice and vignettes of the couples interviewed for this book encouraging.
Let’s face it . . . there are just those times when we’re too tired to think about ANYTHING. What is important, the authors write, is making some time during the day to let our partner know how important they are to you, even if it is expressed non-verbally. For example, make your partner’s favorite meal. Feed the kids early and get them settled so you can share this special meal as a couple. Set aside one night a week as “date night”. It can be as simple as popping a movie into the DVD player and sharing it together.
Positive attitude is essential to making things work. The couples interviewed for this book that were most successful in their relationship were those who could find at least one positive thing to focus on regarding their situation.
Let’s also recognize there are times when we DO fail in our relationships! Sadly, sometimes the stress of raising special needs kids puts such strain on a marriage that it doesn’t survive. The authors then stress that it is important to be able to maintain a relationship with each other that is healthy for the children. This is especially important with special needs children who most often do best with stability and consistency.
This book is an excellent source of ideas for keeping marriages and relationships together despite the pressures of raising a special needs child. The overall message: it is possible for a family to thrive. I highly recommend this book as a tool for making our marriages and relationships healthier and more fulfilling.
Here's another challenge! To win a copy of this book, answer the question: What is the one best thing that helps you and your spouse get closer together? Simply write your submission into the comments section of this post but make sure you include your email address in your submission. If we get a substantial number of comments, then it will be readily accessible in the "Readers Give Advice" section on the front page of this blog. If you experience technical difficulty or don't want to put in your email address for public viewing, you can email your submission to me at firstname.lastname@example.org as soon as you put in your submission and you will still be eligible to win. Just know that your winning submission will be highlighted in a future blog post but you can still remain anonymous. Please send your submission by Saturday, July 11, 2009 11:59 PM. Dr. Marshak will be choosing the winner and will be providing more books so we can have more winners. Good luck. I hope we can all help and learn from each other.
Photo: Barbara Levine lives in
Friday, June 26, 2009
I decided to reissue this blog post regarding sensory processing disorder because I've been able to upload longer videos (2 minutes) to this blog now through YouTube. It depicts what I described in my post below. Sometimes video is just better so I thought I'd share it with you again.- Jenn 6.26.09
6.09.09 Now that summer is here, it brings on a new set of sensory challenges. One of the challenges that really breaks my heart is the water sprinkler. It could be raging hot and Spencer will almost never go near it. Meanwhile, I see kids younger than him getting wet, pouring water all over themselves and having so much fun. I know I shouldn't think like this but I can't stop being a bit envious.
Even though Spencer can sit in a bathtub and be inside a pool, he can not deal with sprinklers or showers. Albert Dungca, our occupational therapist told us to keep trying to expose him to sprinklers. He even told me to try getting him under the shower first. I made a face that said, "Please don't make me do that to him!" I knew he'd act like I was torturing him.
Today, we didn't have ABA therapy and it was raining so we couldn't go out. To alleviate the boredom, I took him into the tub and ran the water in a light flow, easy for filling up buckets. I didn't put the drain stopper to try to simulate how it would be in a park.
At first, he was a little lost and had trouble filling up his watering can but after a while, I could see that he was enjoying himself. Then I thought of Albert's advice and put on my Therapy Mom hat and turned on the shower in a light-sprinkle. He screamed of course but we kept going at it. Surprisingly, for a few minutes, he actually tried to fill a cup with the shower water and pour it into a bucket. I was really stunned.
When my kid squirms, screams, and cries, my instinct is to take him away from whatever that is bothering him. However, by gently pushing him, he started to tolerate it a little more. Wow. I wish I knew that when Logan was little. When he was just 3 years old, there was an instance where a boy sprayed his face with water (for fun) and Logan freaked and in an instant pushed the boy away. Unfortunately, they were in a jungle gym and the boy fell 6 feet to the floor. Luckily he was okay but it just goes to show you how SPD can really prevent kids from making friends.
So here's my recipe for Overcoming Water Spray Defensiveness. It is derived from Spencer's OT's advice and my experience with Logan. Hope you find a point or two useful:
1. Even in the shower, put plain clothes on him so that he learns it's okay to be wet in his clothes. Spencer is only used to being naked or wearing a swimsuit when it comes to water play.
2. Make sure he is in a good mood by doing what he likes first. I let Spencer play a little his way before I turned the shower on.
3. Be task-oriented: I made him first fill up the cup under a running faucet and then we did the same thing with the shower. Shoving him under the shower with nothing to do would have probably sent him running.
4. If he wants a towel for his face, I say, "Later," and delay as much as possible.
5. If he freaks out about having wet clothes, remove them VERY slowly and keep saying it's okay to be wet when taking them off so he can get used to having wet clothes on. (Logan used to streak the park whenever his clothes got wet and I didn't get him a change of clothes fast enough. At one point when he was younger, he wouldn't even wear wet Crocs unless I dried them with a towel. That really stressed me out.)
6. Take turns splashing each others faces in the bath, increase the amount of water as he tolerates it better.
7. After you have some success with the shower, bring the same toys from home to the sprinkler. It will help him generalize and feel more comfortable.
8. Take it easy the first time, when you got him to do what you want, end it on a good note. And keep doing it on a consistent basis.
I used a similar method with getting him into the sandbox and it's working well. If you have a tip, I'd love to hear it. I really want him to get under the sprinkler this summer.
Please note the first eight comments were in response to the post when there was no video.
Tuesday, June 23, 2009
When I was in my twenties, I was very involved with my identity as a Korean American woman. It was a really big deal to me. I worked for a women's organization that was run by Korean American women and for a couple of years, we set up conferences that discussed issues that affected us as Asians and as women.
In many ways, being an Asian American woman was a double blow. As Asians, we dealt with a plethora of stereotypes: complacent nerds, Harvard bound math geniuses, sleazy Chinatown gangsters, and perpetual foreigners despite being raised or even born in the U.S. (Do you know how many times I've been asked where I'm from and after I say "New York," the person says, "No, where are you really from?")
As Asian American women, our stereotype paints us as super-submissive rugs to step on and/or exotic sex kittens. We are marginalized by mainstream American society and we are also marginalized by our male Asian counterparts. There is a reason that you see so many Asian women married to non-Asian men. I know some men have fetishes for Asian women but there is another side to it. Some Asian women sometimes have a hard time dealing with the double standards of Asian men and so they naturally fall in love with men who are not unfair and selfish. (BTW, not all Asian American men are like this- many are really great to their wives.)
I bring this up today because I read something disturbing after doing the happy dance upon hearing the recent Supreme court ruling that says that parents can ask for tuition reimbursement for a private special education school even if they never had their child in a public special education setting. Jen Laviano, a special education lawyer wrote an insightful blog post lamenting how the evening news covered the story in a way that focused more on the costs implicated in the ruling. If you want to hear some dissenting lay opinions, read the comments on Sue Shellenbarger's blog in the Wall Street Journal. Words like "retard," "reform school," "hood," and "flipping burgers at McDonald's" were used by commenters. It wasn't pretty.
Any special needs parent knows that the cost spent now will mean a lot less spent later. It could also result in a great contribution to society. They also know that a child placed in an inappropriate educational setting will negatively impact the child's classmates' opportunity to learn as well. But here's the problem: only the parents of special needs families know this. Possibly included in this circle are the teachers who teach these classes and parents of the special needs child's classmates who are aware that the child is negatively impacting their own child's education. If we are lucky, the teacher and the other parents will recognize the child has special needs. If we aren't, the child and his parents will be painted with numerous assumptions which would be hurtful, not to mention counter-productive.
When I was very focused on evolving as a Korean American woman, I set up and attended workshops for Korean American women and one of the frequent points of discussion was how to deal with misconceptions/stereotypes that impact your progress at work. The answers from the experts was a bit disappointing. They said that it would serve us to educate the people who give us a hard time - plain and simple. It would be hard and confrontational but it would help us and besides, who will do it if you don't? It's the best way to obtain improved relations (unless the person is a real jerk, then you go to HR).
So am I saying that on top of fighting insurance companies and the school system, now we have to educate the parents of the typical children too? It's very hard for me to say this but I think the answer to this question is yes. We just can't sit by and watch them be misled into thinking we are stealing their child's resources.
Yes, we are entitled to adequate healthcare and education but we are not entitled to empathy. And until we get empathy, we can not proclaim total victory. In the most ideal of situations, I think the parent who complains the most about our child in school could possibly be our strongest ally if we let them into our lives. Maybe if she empathized with our child's struggles, she can be a secret weapon-advocate with her motivation being to have an optimal classroom for her child. Can you imagine bringing your child's classmate's mom to an IEP meeting for the express purpose of highlighting your child's weakness/needs? I wonder how many times that has been done. Hmmmm. Okay, it's sounds a little crazy but you never know.....
Maybe if all of us set aside a few minutes of our time to explain our child's side of the story, we may be one step closer to becoming a society that is more accepting of our children's needs and would be willing to wait a little to see their strengths. Also, I think we could recruit our own friends who are moms of typical children to carry out our little PR campaign. After all, they are likely to hear these negative comments more than us special needs moms, right? Who better to spread the word than the people whose children have struggled to play nice with our kids, who have had their stuff broken by our kids when we visited, but still love them because they love our whole family. Whatever we do, I think we must keep talking, especially to our non-special needs parent friends.
This post is dedicated to my friend I.H. who recently reconnected with me (love ya Facebook) and read through my blog to catch up on my life. She gave me valuable insight as a mom of a typical child and as someone who knew me way before the days of Can Mom Be Calm? Thanks I.H. and all the moms of typical kids who read this blog. I'm so grateful that you cared to read about our lives.
picture: In my personal experience, early recognition and treatment of special needs can reduce unnecessary medical costs. Logan managed to break his arm before he turned three. This is when we were still in the dark and the only diagnosis he had was that of "difficult child."
Sunday, June 21, 2009
This post is extremely hard for me to write. I wish I was writing something other than what I'll be saying but since I finally said some of these words out loud for the first time this week, I'll fess up and make it more real today.
The truth is, I can not tell if biomedical treatment is working for me. I really just can't and this is unacceptable to me because we've been at it for almost a year. I know I'm not the most observant person in the world but still I have to see some change. For those of you who don't know what biomed is, please click onto the link because I am not smart enough to explain it. What I can tell you is that I had heard such great things about it, I felt like I was witnessing the beginning stages of a new medical discovery like occupational therapy for the new diagnosis of sensory processing disorder (less than 40 years ago). To me, the theory of biomedical treatment (biomed) was completely plausible and that naysayers from the medical community stating that biomed wasn't proven bla, bla, bla were probably not doing enough.
Even though, we're taking a break from biomed, I still don't believe the medical community is doing enough. Perhaps for ADHD, there is more attention but what about autism? Many biomed specialists feel that ADHD is part of the autism spectrum disorder and for me, that's not hard to believe. I think that is why it's so easy for me to befriend a mom of a child on the spectrum. If you have a child with ADHD and don't believe me, you should read Look Me In the Eye and you'll see what I mean. With autism, you can barely get one medical discipline to claim it as their own- another unacceptable situation.
Okay, getting angry here..... not productive... will stop.
Back to biomed: I tried really hard to stick to the rules. After trying a "Special Needs" Nutritionist for a couple of months, I decided to go for the gold standard and hire a DAN! doctor. He was expensive, was an actual MD, and a pediatrician too! If he can't fix this then no one can, right? I remember telling my developmental pediatrician about our move. She had already been Logan's doctor for a whole year and I was at the brink of begging her to drug my 4-year-old before the promise of biomed blew the breath of hope back into me. She wished me luck and always left the door open for us to come back.
We went back through that door this past week. We were talking about Logan's current medications and vitamins and she said the DAN! doctor should do the prescribing of medication for Logan (ADHD medication) since he was giving him other medicines as well. However, in the softest of voices, I quietly told her that I wanted her to do the prescribing of medication from now on. It was at that moment, I let myself face why I was really in her office that day. I was saying goodbye to biomed for Logan, at least temporarily.
You would think that my husband and I would have talked this over and decided together about such a change but we barely did. Both of us had invested so much in this protocol (diet, days off from work to go to the doctor, lab tests (lots of blood), very involved allergy testing that takes hours and multiple visits, enormous bills from the DAN! doctor, vitamins and supplements, and biggest expense of all, grocery shopping and time... time is money too). Kai and I never had the courage to even talk to each other and firmly acknowledge that biomed had not shown us much improvement but at the doctor's office, I couldn't let our reluctance to face reality get in the way of finding a better path for Logan.
For the record, our DAN! doctor is accomplished and well-known, I think perhaps even nationally within DAN! circles. From our very first meeting, even before taking any blood, he challenged us to give up everything, not just casein and gluten but also soy, corn, peanut, eggs, citrus, chocolate, peas, alcohol, and caffeine, food dye and preservatives. It was difficult but we actually managed to carry out this diet for a long time but still we saw no significant changes.
Additionally, our doctor gave us other things including the B12 shots (there's a lot more but I won't go down that lane). We saw no changes with that either. But we kept going, hoping that time would help the healing but we had to ask, how long is long enough?
I think our visit to the city the other day sort of said it all. A year ago right before we started the diet, I took Logan to a traditional allergist and spent the day similarly to the day I previously wrote about when Logan was uncontrollable. The only difference between that day last year and the one this past week was that he was one year older.
I also want to say that my DAN! doctor knows I'm taking a break from things. We aren't dropping everything and I'm still keeping him in our life, possibly just for allergies.... I don't know. We will also still steer clear from gluten and some other foods because tests and some GI reactions indicate problems in this area. We'll still keep him on those VERY expensive vitamin supplements and B12 shots but it won't go beyond that for now. If we see him worsen, that will be the sign saying that things were working and we just didn't know it!
By the way, since stimulant medications still scare me to infinity, I will never rest for the search to help Logan with alternative methods if I have some evidence that it has helped others. I'm going to try cranial osteopathy soon. I actually found someone that takes my insurance! Others call it cranial sacral therapy but the osteopaths say that they've had more training and the sacral therapists have not. I have a friend who is a professor of osteopathic medicine who assures me that it can not harm my son which was my greatest concern. I am not exactly sure how it works but I'm going to try it and see.
Believe it or not, even though I have apparently suffered major defeat with DAN!, I worked up enough nerve to tell my developmental pediatrician that I was going to try another alternative method. I can only guess what she was thinking but I will never know because she was very gracious and even told me not to try any ADHD medication while I was trying out this new treatment. I like doctors like this, don't you? She might have her own thoughts but maybe she's letting me find my own path while possibly silently acknowledging that she doesn't know everything either. The osteopath was humble too. Not once did he say he could change Logan.
On a final note, for my GFCF sisters (especially the master chefs of the GFCFrecipes Yahoogroup) out there, I want to say thank you for your guidance and support. I will still continue to seek your advice because the diet is important to us. More importantly, I want to tell you that I only wish I had the same good experiences that you are having and that I support you fully in what you are doing for your children. No matter what happens with this break that I'm taking, I will never regret trying out this tremendously difficult task. My kids eat so much healthier than they ever did and I'm proud of myself for baking the boys' bread and cupcakes. I also want to say that in defense of the GFCF (and other things F) diet, I maybe a bit blind about it because Spencer has been making a lot of progress. I attribute a lot of this to ABA therapy because as soon as he started ABA therapy, I saw a lot of changes, especially in speech but we can not say for sure that his diet and supplements didn't have anything to do with it. We'll never fully know how much it helped until we are fully able to let it all go. I don't have the audacity to do that so that is why we are not dropping everything but I am ready to take a partial break and try something new. I'll let you know how it goes.
Pictured: Mother's Day 2008. Our last gluten cake as a family was a mocha cake from a local Filipino bakery. Filipino cakes are amazing.
Thursday, June 18, 2009
Once in a while, Logan and I have a doctor's appointment at where many New Yorkers call "the city." We are really referring to the island borough of Manhattan where most of the best shops, schools, restaurants, and doctors are located. The only people who don't refer to the borough of Manhattan as "the city" are residents of Manhattan.
Logan loves going to "the city," because it means he can take the subway. He is crazy about the subway. He has a map of the New York City Subway system and tries to memorize the stations we use and where the transfer stations are.
We had an appointment yesterday and the day started out great. He was on a train and had his mommy's full attention; a recipe for success. He listened to my every direction but then after the doctor's appointment, I lost him. He could barely walk with me. He either ran ahead or was way behind me. I couldn't decide whether to be worried or angry. He kept switching from being super annoying to endangering himself.
But remembering my last post about being positive, I tried very hard to stay calm. I did manage that but still, he was a mad man. I was able to see some reduced hyperactivity during lunch at a yummy gluten-free restaurant that we sometimes go to but it was so obvious that he needed something more because he was no longer able to self-regulate. I wish I had a sensory gym in my backpocket that I could blow up and use instantly. He could have really used a swing or a ball pit or something...
What can I do in the middle of one of the busiest streets in midtown Manhattan with a kid who can't walk a straight line even while holding my hand? Time out would be impossible and likely useless too.
Today, I happened to have a meeting with Spencer's therapists and I ended up talking about Logan's loss of control. They told me that the trip to the city was overstimulating and overwhelming to him. They suggested that I take him to a bathroom next time and give him some deep pressure hugs. I kind of tried that a little but I didn't go to the bathroom and instead I tried to give him deep proprioceptive input near the cash register at the Gap. It didn't work.
The therapists asked me if I had prepared Logan before going on the trip and I said no. Of course, why would I do something so basic and necessary like that? We are only shattering the routine of a child who needs routine second only to food and water. This is an area of parenting that I really need to fix. I'm sure it can alleviate anxiety - theirs and mine.
Anyway, they suggested making a picture schedule for both Spencer and Logan and while they gave me something for Spencer, they pointed me to a great site for more products that could help Logan organize himself. I looked it up and realized that I knew the founder/CEO of the company! I had completely forgotten about her company because I had met her before I had children and only knew that she had a child with special needs but knew nothing more than that. Can you believe I never even asked her?
I looked at her online store and was so happy to see all these things that can support behavior training. It further supports this thought I've been having about how ABA can help children with ADHD but I still have to do research on that. Please check out the site sometime, it's called Different Roads to Learning and the founder, Julie Azuma, has a daughter living with autism. She's also an advocate in issues involving children, women, and immigrants and was even named one of Inc. Magazine's 26 Most Fascinating Entrepeneurs. And in case you're wondering, I've already asked her for an interview for this blog and she's agreed. Stay tuned. If you have a specific question for her, send me an email and I'll try to ask it.
In her store, I found some really cool things for making Logan's new schedule but I'm going to try out a homemade version first to make sure I'm going in the right direction. So far, my tactic is to create a daily picture schedule and this should be complimented with a picture schedule notebook to help him stay on track on outings. Hopefully this will help him organize himself and make him feel more in control of his day. It's probably no different than what my blackberry is to me and if you know me, you know that my blackberry is an auxiliary part of my brain. I think I'll buy a red one for him and tell him it's his redberry. I think he'll like that because he knows how much I love my blackberry.
Picture: This is our new schedule. I put today's up as well as tomorrow's so he can see what lies ahead. I used a different color for each day and for fun, I wrote in some Korean even though he hasn't learned the Korean alphabet yet. Someday......
Tuesday, June 16, 2009
Today, was just like any other day. Logan was slow to start his morning routine and needed assistance to carry out every single thing he had to do. It took him twenty minutes to change into his clothes. We are talking shorts and a t-shirt here; no big production and yet, he took forever. He does that sometimes.
Instead of nagging, I decided to be cheerful this morning. It's a little sad that I had to make a conscientious decision to be cheerful but I had to so that I could deal with Logan this morning.
It was hard but I held my tongue and did not say one negative comment. Instead I just tried to recognize anything good he did even if it wasn't that great. For example, it took 15 minutes to get him to take off his pajama pants, but instead of saying, "You still didn't change?!?" I said instead, "Oh, look, you already changed out of your pants, great!" I deserve a Golden Globe.
Strangely, it actually worked. Even though he was so behind schedule, the more smiles I gave and positive comments I made, the faster he worked at getting the job done. The next thing you know, he finished his breakfast, took his pills and vitamins, put on his socks and shoes and was ready to get on that school bus-ON TIME. Those last steps were effortless on my part.
The craziest thing was that he actually said to me, "I'm going to miss you, Mommy." I can honestly say that I have never heard that in the morning! Logan is so transparent. He can and would never hide the fact that I've made him happy. I should count my blessings that he's still expressing himself to me this way. I'm sure when he's nearing those teen years, such expressions could be revolting but for now, I'm lucky my little guy still likes me.
I found something else today about feeling good about yourself. I read a really great story from a guest blogger on Well- Tara Parker-Pope's Health Blog from The New York Times. The guest blogger had ADHD when he was a child (rode the short bus like some of our kids do) and felt "retarded" for much of his younger years until he discovered his love for running. His accomplishments empowered him to feel good about himself and helped him get through high school. He finished university at the Master's level, became a teacher, and is now a principal of a high school in Ohio.
Excuse me, but WOW!!!!!!! It's not only inspiring to me as a mom but to me as a person! It's one of those stories that I'm going to have to print out and save in a Real-Life ADHD Stories Folder for my kids when they get older. (OOOH, now that's an idea.) I'm not sure Logan is ready to hear about his diagnosis yet but I can see that he knows that he has a hard time with certain things.
Stories like this will certainly ease the pain and will hopefully lift his spirits when he feels alone and "stupid." The fact that the guest blogger is a principal is also great since it's a role to which he can relate at an early age. Three cheers for ADHD role models! Now, I wonder how we can find some more...... I only know of Michael Phelps and Ty Pennington. Let me know if you have anymore names and stories. In the meantime, you might find John Elder Robison interesting. He has Asperger's and not ADHD but, I found his autobiography, Look Me in the Eye just as inspiring. I read it in just a few days and this slow-processing brain of mine can't say that about just any book.
Picture: There is no question: Logan loves to run. I think he was holding onto some dandelions in his pocket which he later gave to me. I hope he'll like track if and when he tries out. I was on the track team for a year in high school and gave new meaning to the word "last." I have a feeling he won't be the same. I did finally find my "thing." I loved writing and being co-president of the Asian club in high school. There were days when I went to school just so I could go to a club meeting.
Sunday, June 14, 2009
Spencer is doing very well these days. We still have our challenges but in general, we're happy that we've received therapy for him so early. However, despite the progress, I was still surprised when his behavioral therapists felt he was ready for potty-training and they warned that we shouldn't miss the boat when he's giving us the signs that he is ready to learn.
"OKAY! Let's go for it!" I said. We got the potty out and it took a long time but he finally did it and then he did it for a few days straight.
Then, I think I made a mistake. I think I should have just concentrated on this issue and really tried our best not to leave the house for about two weeks or so. However, life called and we needed to go out and so we put a diaper back on him and skipped the potty for a couple of days.
And then after we were settled back home again, we said, "Spencer go potty."
"No, no potty."
And no potty it was for several days and we tried and tried to get him to go back but nooooooo, no potty.
And then the strangest thing happened. He refused to urinate at all, not even in the diaper. I got so worried that I even called the doctor. This child clearly had to go but he would just hold it in. He would sway, dance, and do whatever he could to hold it in and he even whimpered in pain but still he would not pee.
The doctor said that if he didn't urinate in a 12 hour period, then I would have to take him to the emergency room. She suggested that I stop potty-training for now and that I should put him in a shallow bath and this might stimulate him to urinate.
"Okay, Spencer, let's go to the bath. " The minute he stepped in, he sprayed me across my shirt and I was sooooo relieved.
His therapists marked this behavior as a sign of anxiety and debated whether or not the potty should stay out of sight. Since he continued this behavior when the potty was in sight, our ABA lead therapist told us to put it away for a while. A day after we put it away, he stopped holding it in. No more anxiety for my 2 year old.
I don't know why I'm so nieve. I'm blogging about having 2 children with special needs and I'm still surprised at how much anxiety they can have at such an early age. Spencer is the child who pretty much starved himself last year and now he is holding in his urine to the point where it hurts and somehow I am still so surprised. What don't I get? Maybe I am in a perpetual state of semi-denial.
One thing that I am learning is that children's anxiety is rather mystical and I really need to pay more attention to this as a source of behavioral problems. (I also heard this from Kirk Martin- I really like his work! I can listen to those CDs over and over again.)
I guess the best thing I can do is show him that I can be relaxed but who am I kidding? My kids may have special needs but when it comes to me, they have x-ray vision. They probably know better than anyone else that I find it extremely difficult to relax.
Another funny thing happened as a result of this trial with the potty. The lead therapist had told me to read more on potty training and continue to read potty books with Spencer and so of course, the first thing I did was google "toilet training." Immediately, I was led to a parenting site and I realized that I hadn't looked at one of these parenting (for typical children) sites in probably a whole year. Wow.
I remember how much I searched through those sites whenever I had problems with Logan and how many times, I didn't get anywhere with the advice that was often prescribed. I must have looked up every possible problem they wrote about...... Breast feeding, Bottle Refusal, Hitting, Biting, Tantrums, Reading To Your Child, Sleeping, Pacifiers, and the list goes on. I wonder if I ever stumbled upon the lines, "if this doesn't work, your child may have a developmental delay. " I probably did and ignored it.
It's so hard to know what to do and now that I have stamped the "special needs" stamp on my kids, you would think it would be easier but it's really really not. I think I'm probably not in semi-denial but rather I'm just not that accepting the fact that I don't know everything and that I never will. I wonder who is more anxious, the one who refuses to pee or the one who needs to control just about everything. Sorry Spencer but Mommy wins this one.
P.S. I did find a special needs-potty training webpage. It was helpful.
P.P.S. (added 6.19.09) I found another book on special needs toilet training but I haven't read it yet but here it is the link.
Picture: Logan on his way to preschool #2 a couple of months before we finally sought professional help for his issues. Babycenter.com searches that month were likely: potty-training, is it too soon for nursery school?, aggression, discipline... I wonder if there is a topic entitled, "How to know if you are a bad parent?" I would have likely clicked on that first.
Thursday, June 11, 2009
I know I talked about cruelty in disciplining special needs children before but unfortunately, this story gets retold over and over again. A teacher apparently made a 6-year-old girl sit topless in the classroom for 15 minutes because she was stimming. (Click here to read the story) The teacher resigned but still what happened, happened and you can never take it back. I wonder how a parent can prevent this from happening to their child. Are there signs or clues to tell a parent that the special education teacher for their child's class is unfit? Something worth investigating but I've been saying that a lot these days. The list keeps piling up but unfortunately, it's all so important and it has to be done.
However, we can end this post on a good note. I read a story from adhdmomma, a kindred spirit, the other day and teared up. It was one of those great teacher stories that gives you hope that a wonderful education is possible and real. In the comments section there is a good idea about how to thank a great teacher. This post helped me to remember my favorite elementary school teacher, Ms. Hefter and how she brought out the best in me. Additionally, this year, I have to say that I've never been so touched by everyone in Logan's school. They all try so hard and are out there for Logan 100% everyday. We are very blessed. I wish you all the best as you wrap up the school year and hope you are looking forward to an even better school year come September.
Picture: Therapists are teachers too, right? Anastasia Pieri, Spencer's speech and feeding therapist used a baby doll, cup, spoon, and bottle set to teach Spencer about eating. She goes above and beyond always and has really helped Spencer grow to be a very happy and healthy toddler.
Sunday, June 7, 2009
Recently I was invited to a barbecue party where I didn't know most of the moms there even though they were from my neighborhood.
I think I didn't know them because most of them had children younger than Logan and most of the moms were work-outside-of-the-home moms. When I commuted to work, I never met any moms in the neighborhood. I hated that. It was one of the reasons that I was late in figuring out Logan's poor social skills because I could never get a playdate for him on the weekend. Now I know plenty of moms but that is because I quit my job as a publicist.
I found myself asking all the moms at the picnic what they their job was. I practically took a census. I also found myself not talking about much except for my latest project with Logan, getting him into an appropriate Kindergarten class (not so easy as I'm learning). I did talk about this blog a bit but I wish I had more good news like yes, I finally started my freelance writing career. I would have loved to say, "I just published an article in......." But no such words came out of my mouth.
And of course, what else do I talk about? Anyone who was dealing with issues such as special needs, special education, evaluations, and allergies. I have nothing in common with anyone except for things like speech delays! What happened to me? Does this mean I don't have a life?
Don't answer that!
Because I want to tell you that I'm working on reinventing myself or reclaiming my life, whatever you want to call it. I have joined twitter so that I can increase the exposure of this blog and access more resources out there. I have also tried to find more familiar faces on facebook... faces I knew before my belly got big and I traveled to a planet called ADHD.
Special needs or not, I think many moms reinvent their careers after they have children. Two years ago when I found out that Logan had special needs, I dropped everything so that I make sure he received the best care possible. However, now that I've dropped everything, I have been spending some time picking up those pieces of myself, my identity, and the search for my real passion. It's not that easy and it's a little scary. Okay, it's very scary but I will get through it. Step by step.
Now where did I put my courage juice? Nothing like a nice glass of red courage a.k.a. Shiraz to speed up the progress of self-transformation.
Picture: the very first article I ever published. It was an article about cold noodles for the now defunct A. Magazine: Inside Asian America. My high school buddy was the editor and gave me the chance of a lifetime to put my byline in a real magazine. One of the proudest days of my life.
Friday, June 5, 2009
I have heard of this happening to people and I thought I knew what I would do but then it really happened to me and the sheer angriness and inappropriateness of the person completely dumbfounded me.
This is what happened: After picking Logan up from the school bus, Spencer, Logan, and I walked back into our building. We have a hard time with this transition. Unless I march them into the elevator like a drill sergeant, they will run around (street or hallway), laugh, shout, shriek, and do anything else that can earn them the title of "The ADHD Brothers."
That day, I saw my very elderly (90+) and blind next-door neighbor walking toward the elevator door with his home health aide. Of course, even though he had an aide, it was very apparent that an extra hand would have been good to hold open the door for them so I did. This of course resulted in the ADHD brothers being left to handle themselves for a minute or two.
Then another elderly neighbor from my building came by and saw the ADHD brothers doing their thing, jumping and shouting in the mailbox area. The elevator is very close to the mailbox area but my back was towards them because I was holding the elevator door so I could only hear them but not see them.
The next thing you know, this lady is shouting at my children, telling them to shut up. (Shut up?) By the time my elderly and blind neighbor and his aide were safely in the elevator, Spencer came running to me in tears. What an awful scene.
I got my two kids in the elevator and then she came in as well. Then, while looking at the floor and not at my face she reprimanded me:
-You have no control over your kids
-Your kids hold up the elevator on your floor because your kids are always playing with it
-Your kids are so loud, screaming everywhere
-Everyone in the building is talking about you
Ouch. Ouch. Ouch. Ouch.
Sometimes, I kind of just ignore these people, especially if they are elderly and looked unreasonably angry as she did. However, she did make little Spencer cry and THAT AIN'T RIGHT. Either way, like with my neighbors downstairs, I usually tell them that my children have neurological disorders that causes them to exhibit certain behaviors that are hard for me to manage. But this time, I had Logan with me and I felt strange saying this in front of him especially in such a hostile situation. When he was younger, I would have probably said something but now if I talked about him in front of him, he'd probably ask me "Mom, what does nurcology shoulder mean?" Articulation, you gotta love it.
Nevertheless, I forced myself to talk back to her just because while Logan said nothing, I am sure he knew what was going on. I have to model how to respond to a bully, don't I? I told her that I do have control over my kids (why did I say that?) and that my children don't play with the elevator (not the way she says they do) and lastly told her that she was unbelievable (ma'am). Very weak, I know. It was just an odd situation. This lady is generally very nice and had even once cried on my shoulder because she is at home caring for her husband with Alzheimer's. I even gave her some information about a caregiver program I knew of that could have been of assistance to her.
Don't get me wrong, I know I should have just told her VERY FIRMLY that she had no right to do what she did and if she had anymore complaints, she could just direct it to building management. But this incident opened up other questions for me.
- The truth is that I don't always have control over them and they are loud and unruly. How can I explain this while my kids are standing right next to me? Are there times when I shouldn't bother?
- Should I feel bad that the "whole building is talking about me?" I know there are people who like my kids but of course, some people will not like their noisiness. I do care about my neighbors. I have to live with them. Should I now start a behavior training tactic directed at having good behavior in the hallway and elevator?
- What are my rights when it comes to having kids with neurological disabilities and living in an apartment building?
- When is a good time to talk to Logan about his condition?
- When is a good time to stop talking about Spencer's (now 2) disabilities in front of him?
Either way, I don't know if any of you are interested but now I'm really curious about those questions above and once I get them answered, I'll let you all know. If you have a tip on who is a good expert is to talk to about this, please write me an email and or a comment.
Picture: This is my "cutey face" picture of Spencer. How could anyone make a 2 year old cry like that?
Tuesday, June 2, 2009
I am not "cured." But I am done with them for now.
In my first blog post, I wrote about how Klonopin makes me a better parent. At this point, I can just say that Klonopin can temporarily make you a better parent. What I've learned is that spending the afternoon by yourself can possibly have the same calming effect as medicine. Unfortunately, it is easier to take a dose of Klonopin on a daily basis, than to spend an afternoon by yourself. This is where the trouble begins.....
Here is the list of things I have done in trying to find the "Calm" in Can Mom be Calm? (many of which I have not followed through because I'm too lazy, tired, whatever.... ):
- Relaxing meds like Klonopin (2 different kinds)
- Antidepressants (3 different kinds)
- Mood stabilizer with a relaxing med
- Seeing friends
- Blogging about my life lessons as a mother of 2 children with special needs
- Going on Dates or doing Date Night with my husband (of course, not anyone else)
- Psychiatrists (2) Internists (1)
- Talk therapist/social worker (2)
- ADHD drugs (2)
I think I'm doing a really bad job of coping. Yeah, yeah, I got a lot on my plate, I know, but I was relying on psychiatrists too much. I don't think I was doing my part. I gave up on the swimming, the yoga, the date nights. I see friends sporadically and the only time I ever spent for myself was when I went to see the psychiatrist! I know, this is just no good.
So here is the new plan. I'm taking a break from trying to fix myself, at least with a psychiatrist, for now. I didn't realize how hard it would be to find the right fit or the right diagnosis. It's also possible that I'm not being cooperative or patient enough, but then again, no... I am cooperative but definitely can work on the patience.
When I was doing medical public relations, I met many patients who went through the "medical mill." That is, they would go to the wrong doctors for many years and continue to suffer as physicians tried to figure them out. I would always be publicizing their "A-Ha" moment when they finally went to the right doctor at the right hospital and then they were cured! HOORAY! I'm sure you've seen those stories. It's on the news all the time.
I often wondered how these patients could endure such a series of misdiagnosis for so many years. I guess I kind of know how they feel now. It is really tiring to fix yourself. The hope and disappointment coupled with the actual fatigue that goes into seeing doctors and answering and asking the same questions over and over again. Of course, dealing with your insurance company throughout all of this also adds to the workload of fixing yourself. Who needs such aggravation when you are already sick?
Hopefully, I will find calm soon enough but for now, I'm going to just take a break. However, I won't be completely letting go. I have decided that for this next month I will try to exercise and just take some time to myself (I've been approved for respite services so I can exercise during the day twice a week for about two months). I am also going to try to sleep more which is what my last psychiatrist advised me to do anyway. The one great thing about sleeping is that it is cheaper than doctor visits, pool memberships, babysitters, and even generic medications. I could do cheap. We definitely need more cheap around here.
Picture: A day of calm at the beach. It wasn't a perfect day but I remember clearly being calm about whatever happened that day. I relished in the kids' accomplishments (in play skills and eating skills) and just chatting with my friend.