Thursday, January 28, 2010

9 months - 42 rounds of DMSA/ALA

It has been a very long time since I last wrote. I had mixed feelings about what to post since I was not seeing a lot of progress. But since October, I can see that I have seen enough improvements to post another log.

Jonathan started a new private school last September. They focus on tons of moments before each academic class, they do additional therapies like speech, tomatis, brain exercises, OT, etc., and they do fun things like Tae Kwon Do, swimming, fun social science classes, etc. Jonathan really loves it there. I can see that it has been a very good experience for him with regards to this academics, his vocabulary, his exposure to different hands-on activities, and the love he receives is priceless. He adores his teachers.

With regards to his eccentricities, Jonathan's humming is completely gone. I don't know when it happened, but I noticed 2 days ago that he stopped humming a while ago. He started singing a song in the car and I almost said "no humming" as I normally do since he as 3 years old, and suddenly I noticed that he was not humming. I turned and asked him "when did you stop humming?" and he looked right into my eyes and said "I don't know". It was kind of strange.

Same with the scratch in his throat - which seemed like a tic in his brain. I posted last time that the homeopathic drops that I started him on late summer had stopped the scratch. And since then, he probably has scratched his throat 3 times in the last 4 months.

The items I am very concerned about are his social skills, processing, attention and language.

  • Social: Jonathan is actually a very social kid. He loves to be with people, interact with them and play. The problem is that his interests are not of a typical 7 year old and hence he doesn't fit in with other kids and sometimes with adults. He gets bullied a lot when around kids that are not into technology like he is. But his interests are more than just video games, he is into emails, contacts and different applications and how the work. So it creates a challenge and frustration because he feels left out. He is a very sensitive kid. After a lot of frustration on our part (his dad and me), and talking to his doctor, we came to terms with the fact that Jonathan needs a different social setting to succeed. His doctor said to me "Forget about the word autism because that is not the problem here. The problem is that he is a very left-brain child and needs to socialize with kids like him - kids that like technology and that he can relate to. Not with with disabilities, but kids with the same interests. He will not be the kid to play with action figures and dinosaurs, so find the right setting for him and he will thrive." He is obsessive compulsive when it comes to electronics, but he uses them to interact and it is easier for him to be part of a social group under those conditions than with kids that play Batman and Spiderman. So we are on a quest to finding groups where he will be happy.

  • Processing: This is definitely the biggest of all his problems. It is at a minimum auditory and visual. It is also executive functioning, which plays a huge role in his attention problems. Sometimes he does not understand what he hears, or he does not see stuff in front of him. Sometimes he cannot express his thoughts verbally. I have noticed that he can express himself better when he writes an email or a letter than when he talks to us. He has made huge progress on this area. But it is still an issue. Perhaps one that will follow him the rest of his life and he will need to learn how to live with it and adapt his life accordingly.

  • Attention: he does not have the typical ADD symptoms, but he has attention problems that prevent him from comprehending books when reading, or understanding conversations. He can remember things that other kids with ADD cannot remember, but when he sits down to read a fantasy story, he cannot follow up well. Before the page is over, he already forgot the topic. I am working with him, but this is a hard one. If he is interested in the topic, he remembers it well.

  • Language: his receptive language continues to improve. He has little problem understanding a question or short conversation as long as he understands all the words. Long conversations are a bit more challenging when the vocabulary and situation is more complex unless it relates to technology or science. Expressive language is still an issue. I want to have his verbal IQ retested again this August to see if it has gone up from 82. His intonation is much better. He does not sound like a robot anymore. But he needs to improve a bit because he has trouble pronouncing some of the words. His tone (volume-wise) is better. He still has a high volume tone when he speaks, but better than 6 months ago.
DAN! Dr Visit

We had a meeting with his DAN! doctor on Tuesday. It went really well and was refreshing. We did some blood work before the visit and the results were provided to me during the visit. His liver functions are a bit high but the Dr. believes it is because he is growing. But what caught my attention was that his TSH (thyroid function) is normal high and he wants to look into this. He gave me a prescription drug (very low dosage) to lower this value and that might help him lose some weight (he is 20 lbs overweight for his age - 89 lbs and he is 7, almost 8), and it might help with his energy level (he is a bit lazy when doing things but mitochondrial disorder has been ruled out). I am going to schedule a meeting with pediatrician to do more thyroid and other glands tests.