The developmental pediatrician ordered a few new studies. Will has already had an EEG which was ABNORMAL. I don't even understand what the neurologist was telling me. I look forward to getting the report so I can read it better and hopefully understand. Because it came back abnormal, we will now go back for a 24-hour overnight EEG in January. They will look for seizure activity.
Will is going to see the autism geneticist in February and I assume have a more in-depth genetic study done. The doctor mentioned something about exome sequencing. I hope he gets it done.
Will is getting another MRI of his brain in January to see if anything has changed with his Chiari malformation... or anything else for that matter. The neurosurgeon didn't think it was necessary, but I said: Yes it is. So the doctor agreed to order another one. She's a good one. Plus, Will has hit his head on various surfaces so many times in the last year, I think we need another look. I'm glad for him to do this again.
Will was started on 0.5 mg of melatonin and it is really working well to help him fall asleep at night. It's kinda like a miracle! The only problem we're facing is he wakes up now in the middle of the night wide awake and ready to play. He is up for a couple hours every night at least. I'll keep monitoring this situation and maybe get him some different help. But I'm happy he is at least able to fall asleep now, rather than trash his bedroom for an hour or two as he goes to bed for the night.
Now with a diagnosis of autism Will is on a wait list for the autism Medicaid waiver. The wait list is 6 months to 2 years. Don't even get me started on how I find this to be outrageous. But once he gets the waiver he can get different therapies covered. I get upset because he needs help now. His behavior is getting worse and I hope we will be able to combat it with some behavior therapy in the future.
That's about it for now. Once all the new stuff has been done, I will write more about what we found!
Wednesday, November 20, 2013
Children's Hospital Evaluation 2013 - Autism
I took Will back down for his yearly checkup at the Child Developmental Unit at Children's Hospital in Aurora. The appointment went well. He did a really good job and did everything he could. He wasn't tired or unhappy. He saw the occupational therapist, speech therapist, physical therapist, child psychologist, and developmental pediatrician.
The biggest thing was that Will was given a diagnosis of autism. Last year they told me: 'No we don't think he has autism. He is too social.' In the last year he has changed in that he is able to focus for very long periods of time on repetitive tasks, like throwing balls or rocks. Over the summer he loved throwing rocks so much that some days he would be outside 3 hours throwing rocks and never get bored with it. He also has his obsessions with opening and closing doors and drawers. When we go visiting family or friends he isn't interested in the people so much as interested in their houses and the things he can explore there and the doors he can open and close. Will makes good eye contact with me and Mickey, but we are really the only ones.
The way autism was diagnosed for Will is the professionals take his overall developmental age, which was 9 months. Some categories were higher than 9 months, but that was the average. They look at what a typical 9-month-old is doing socially and Will is not doing what a typical 9-month-old does. He doesn't interact like you would expect a baby to do. So since he falls below that, they put him on the spectrum. I'm happy to have a diagnosis of something. I don't know if that is Will's only issue. I think he has a lot more going on. I think his brain is having some very mixed signals and things just aren't connecting properly.
I will be honest: When I picture a child with autism, I picture hand flapping and rocking along with some genius activities; smart at math or amazing at playing the piano. I really do not mean to be offensive about this. I am just saying that's what I have always pictured in my mind. Now I know differently. They call it autism spectrum disorder because of the large spectrum of symptoms, skills, behaviors, and impairment. And Will doesn't really do any of these things I picture. He doesn't really flap his arms around or rock. He is aware of us and his surroundings. He likes to cuddle and be close and shows some affection. He is very silly sometimes and loves to laugh and be tickled. My eyes are more open now the more I read and learn about autism.
The team of professionals used a thing called "The Bayley Scales of Infant Development" to evaluate Will's overall development. In cognitive he is "extremely low" at 4 months. In fine motor he is 9 months. In gross motor he is 19 months. In receptive language he is 5 months. In expressive language he is 9 months. Will is 3-1/2 years old. In a year he has made 4 months' worth of progress. Some progress is better than no progress, yes. But I find this to be sad. I'm sorry, but I do. I'm worried about Will's future. I am worried about it more than anything else. I do not know what he will accomplish. Will he ever be able to be toilet-trained? Will he ever be able to read? Will he ever have a friend? What will he do without me when I'm gone? We can only keep pushing forward and pushing him harder to learn.
The biggest thing was that Will was given a diagnosis of autism. Last year they told me: 'No we don't think he has autism. He is too social.' In the last year he has changed in that he is able to focus for very long periods of time on repetitive tasks, like throwing balls or rocks. Over the summer he loved throwing rocks so much that some days he would be outside 3 hours throwing rocks and never get bored with it. He also has his obsessions with opening and closing doors and drawers. When we go visiting family or friends he isn't interested in the people so much as interested in their houses and the things he can explore there and the doors he can open and close. Will makes good eye contact with me and Mickey, but we are really the only ones.
The way autism was diagnosed for Will is the professionals take his overall developmental age, which was 9 months. Some categories were higher than 9 months, but that was the average. They look at what a typical 9-month-old is doing socially and Will is not doing what a typical 9-month-old does. He doesn't interact like you would expect a baby to do. So since he falls below that, they put him on the spectrum. I'm happy to have a diagnosis of something. I don't know if that is Will's only issue. I think he has a lot more going on. I think his brain is having some very mixed signals and things just aren't connecting properly.
I will be honest: When I picture a child with autism, I picture hand flapping and rocking along with some genius activities; smart at math or amazing at playing the piano. I really do not mean to be offensive about this. I am just saying that's what I have always pictured in my mind. Now I know differently. They call it autism spectrum disorder because of the large spectrum of symptoms, skills, behaviors, and impairment. And Will doesn't really do any of these things I picture. He doesn't really flap his arms around or rock. He is aware of us and his surroundings. He likes to cuddle and be close and shows some affection. He is very silly sometimes and loves to laugh and be tickled. My eyes are more open now the more I read and learn about autism.
The team of professionals used a thing called "The Bayley Scales of Infant Development" to evaluate Will's overall development. In cognitive he is "extremely low" at 4 months. In fine motor he is 9 months. In gross motor he is 19 months. In receptive language he is 5 months. In expressive language he is 9 months. Will is 3-1/2 years old. In a year he has made 4 months' worth of progress. Some progress is better than no progress, yes. But I find this to be sad. I'm sorry, but I do. I'm worried about Will's future. I am worried about it more than anything else. I do not know what he will accomplish. Will he ever be able to be toilet-trained? Will he ever be able to read? Will he ever have a friend? What will he do without me when I'm gone? We can only keep pushing forward and pushing him harder to learn.
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