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Tuesday, April 13, 2010

What a difference a year makes

Today is Sam's 8th birthday, and I'm embarrassed to say, I've been on the verge of tears all morning. I'm just so proud of him and everything he has accomplished.

It was one year ago this month that we got Sam's diagnosis of Asperger's Syndrome. What a day that was. I had been fighting for almost a year prior to his diagnosis, trying to get information on doctors, trying to get school professionals to give me some direction, trying to convince Sam's father that there was something going on with his son and that it wasn't ADHD (like another doctor had said). 

It was so clear to me that Sam had Asperger's Syndrome. But when I talked to his teachers, his occupational therapist, his behavior specialist, the special education department, his preschool administrator, family members, social services... everyone had a different opinion. It was so incredibly frustrating, trying to figure out what to do and where to go.

Finally, something happened that spurred everyone into action: Sam threatened Kaydee with a knife. Horrible, right? But really, if it hadn't happened, we may still be spinning our wheels. 

Sam didn't really threaten his sister with a knife. I'd mistakenly left a knife out on my desk after opening a package from his father for Sam's birthday, and Kaydee picked it up while I was in the shower the next morning. Sam took it away from her and was trying to explain that it was dangerous. She wasn't listening, so he mimicked "stabbing" motions to show her how dangerous knives are, and Kaydee ran to me crying that Sam had tried to poke her with a knife. Because I hadn't seen what happened, and Sam wasn't telling me anything, I had to go with what Kaydee said happened. 

I called the special education department, spoke with my parent liaison, and she got me an appointment to see a doctor in Bismarck the next day. Finally I had the name of a doctor who specialized in Autism.

When we met with the doctor, I was terrified. I thought Sam was going to be locked up or admitted to a psychiatric facility or taken away from me, because of the knife incident. Instead, I finally got answers. I was finally told, in no uncertain terms, that Sam was autistic.

While some parents may feel disappointed or upset with a diagnosis of Asperger's Syndrome, I was relieved. No, I was more than relieved. I felt vindicated. Ever since Sam was a baby, I'd thought I was a horrible mother. I thought I had done something terribly wrong. Why couldn't I get through to this kid? Why wasn't he listening to me? Why was he acting out all the time and fighting me over stupid things like socks? Why was he so much trouble? 

People whispered about me. No one ever said it to my face, but I'd heard enough to know that the general population thought I was a horrible mother too. Hell, even my ex-husband had his doubts in my capabilities as a mother. 

But no longer. Now I have a name for what ails my son: Asperger's Syndrome. Now I know what I'm dealing with and how I can help Sam with his disability. I dove into research. I ordered every single book I could find about Asperger's Syndrome. I watched him and learned about him and put all my knowledge to good use. I fought for his rights at his IEP meetings. I explained his behaviors. I implemented new tools at home and introduced those tools to his IEP team to help Sam cope. 

And while I've been talking this whole post about how his diagnosis has benefited me, it's really benefited Sam the most. Last year at this time, he had severe sensory issues. He had to wear his socks inside out because the sock "pimples" bothered his toes. I couldn't get him to wear shoes (he wore snow boots). He couldn't stand bright lights, and he cried when his photo was taken with a flash. We couldn't go to a basketball game because of all the noise and chaos. He would cover his ears and yell for everyone to shut up in the lunchroom. 

Today, he has none of those issues. He can wear socks and shoes without problems. He can wear t-shirts with a silkscreen on them. While bright lights still make his eyes water, he doesn't throw the fits he used to. Last month, we went to a basketball game, and Sam just remembered to watch the time clock so he could cover his ears when the buzzer rang. He's learned to manage his sensory problems.

It's not only his sensory deficiencies either. Things are so much more calm at home. I don't fight him when he fills his pockets with rocks - I let him have a rock collection. I don't fight him anymore at the dinner table - if he doesn't like what I make, he knows he can make himself a sandwich. We use the Incredible Five-Point Scale to help him identify where he is emotionally (and it works for me too!). There are so many other accommodations and changes we've made at home, but by now they've become second nature to us, so I can't even identify them all!

I'm just so proud of my boy for all he's accomplished this past year, and I'm proud of myself. I'm proud of Kaydee, who at five doesn't really understand it all, but she sticks up for her brother at school. She's had to endure a lot this past year too, but it hasn't broken her playful spirit. 

Yay for us! 

Happy birthday, Sam! May you experience even more growth in this upcoming year.

Additional reading:

Since Asperger's Syndrome is considered a social disability, it is easy to recognize in school-age children. However, there are some early warning signs to Asperger's Syndrome that can began in infancy.
by Heather K. Adams


  1. Awesome! Way to go Sam and Happy Birthday! ANd way to go Heather. Braeden, as you may remember, was diagnosed with Autism/ PDD-NOS a few months ago. We are still struggling with the very beginnings of therapy, accommodations and making so many changes at home. It's wonderful to hear/ read stories of Moms and kids who are making progress.

  2. Now that I look at the date, Happy belated bday to Sam! LOL