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Tuesday, September 28, 2010

The Diagnosis

It's officially Asperger's. It was a little disconcerting to hear that, even though I was expecting it. Brian Balance doesn't focus on labels like Asperger's, ADHD or autism. Rather, those and other neurological disorders are either right-hemisphere deficiencies or left-hemisphere deficiencies. This is all explained in-depth in the book and on the Brain Balance website, so I won't go into it here. However, they do have a scale of ADHD, Asperger's and autism. He was definite for ADHD and Asperger's, with one breath away from the autism line. That was a shock. I wasn't even sure he would be positive for Asperger's.

That result came from questionnaires they had me fill out about his behaviors. They also did extensive testing in the Center. They use what they call "brain-age" to determine if and how far a child is behind. He scored an age 10 on the cognitive tests (including having a 7th grade vocabulary - minus the curse words) but only an age 5 on the physical tests (gross motor skills, fine motor skills, balance, auditory processing). He is 8, almost 9, so you can see where this would be an issue. The biggest problem, though is that the hemispheres are so far out of balance.

One of their test is a "pseudoword decoding" exercise, where they show the child made-up words to test their phonics skills. (He scored "greater than age 19, 11 months" on that one.) The Center Director went over all the the results with us, but that's a lot of information to process in one hour, so I went through everything when we got home. I was reading her notes on his cognitive tests, which she didn't mention at the meeting. I literally laughed out loud when I read it. Remember that imaginary world he lives in? Well, it has its own language. He's all the time telling us what some word (sometimes made up, sometimes just appropriated for his own use) means in his language.  This is from the director's notes: "He said some of the words on pseudoword decoding were real words in his imaginary language... He was fun to work with." LOL I can just see him telling her that.

He is also very sensitive to light (we already knew that, but again, sometimes, it sounds different coming from someone else) and although most of his body, particularly his legs (I was thinking of the tactile test we did yesterday when she mentioned this), lack sensitivity, his head is hyper-sensitive. That would explain why it "hurts" to get a haircut. He says he can feel the hairs getting cut. These days, he'll go get a haircut without crying, but he still complains about it.

So, now I'll be doing what I do best: research. Even though I plan to do the program with him, it will take a few months to show results and in the meantime, I need to know how to help him (and me) deal with everything.

It only recently occured to me that we may be dealing with Asperger's. When I would mention it to people, I got varying reactions.
"He doesn't act like other kids I know with Asperger's."
"He's just a boy. There's nothing wrong with him."
"I don't believe Asperger's is real. It's just one more thing that they've made up to label healthy kids who are outside the 'normal' behavior."
"Really? He seems fine to me."
Most of those things were nice to hear. It meant that others see my son as a normal little boy. But they were (unintentionally) criticisms of my parenting and common sense. If I were not as strong or opinionated as I am, those criticisms may have kept me from seeking help for my son. But I knew something just wasn't right. I'm the one with my son all day every day. I'm the one who sees him at home and with our extended family where he feels comfortable enough to be himself. There are some behaviors, of course, that he can't control at all, but there are some that he holds in check until he gets home. (Wait... that must be bad parenting. How silly of me.)  Really, though, if you have concerns about your child, do some research and talk to a professional who will help you. If you choose to mention your concerns to friends, be prepared for all kinds of responses, but remember that no one knows or loves your child like you do.

Here's a great page I found through a friend's blog. It's called Letter to Grandparents, but really, anyone who is around an Aspie needs to read it.

I'm getting some vibes from a few people who are wondering why I'm trying to change my son instead of just accepting him the way he is. Well, I've accepted him this way his all his life, haven't I? He's my first-born and will always hold a special place in my heart. I don't want to make him into someone else or make him feel like he can't be himself. But if he had a disease that caused him pain, and would always affect how he lived his life, and I believed there was a way I could cure him by taking an hour out of my day every day for six months, what kind of mother would I be if I didn't do it? So he has Asperger's. Okay. I believe it can be cured. Maybe not by me. In the end, we may have to see what our options are and if there is any way we *can* afford the Brain Balance program. But it's possible. The program is just a series of exercises, each with a specific goal. He knows it's about helping him to be able ride his bike or be calm or be able to go to a movie theater. He's not being told or made to feel "Something is wrong with you and this is how we're going to fix it." We're focusing on the things he wants. So, no, I'm not someone who can't accept and appreciate my awesome child for who and what he is. I'm someone who knows there is a whole world out there that my child has never experienced and I am going to do what I can to open up his possibilities so he can be anything he wants to be.

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