Getting on Track

After Evan's diagnosis, we made a round of phone calls to our close friends and family. We decided to be selective about who we told. This was all foreign territory and we determined that going slowly would be our best bet. After a few calls, we wished we could press fast forward. People weren't sure what Asperger's was and weren't sure what to say and it all added up to an awkward conversation. Someone even said, "Well, at least he doesn't have like cancer or something." Everyone wanted to make me feel better, but didn't know what to say and neither did I.

Evan's pediatric neurologist had advised us to start occupational therapy (OT) and speech therapy for Evan. First he would need evaluations. We called our insurance company and after taking notes and asking questions realized we might need to hire a translator. Understanding our coverage was pretty confusing. There was only one place that would accept our insurance, a local children's hospital. We set up the evaluations and waited.

In the meantime, a friend put me in touch with a mom whom I had met previously. She had a special needs son and spent an hour on the phone with me giving me advice. I realized how important it was to have support and the knowledge of those who had been there before me.

Evan had his OT evaluation in October and we watched as the therapist practiced different skills with him. It was very interesting to learn reasons behind some of Evan's behavior. Next up was his speech evaluation. I sat in the tiny chair in the tiny room as Evan took test after test. He spoke very well, except for the issue of pragmatics. Evan didn't understand context or how to use language in daily life. For example, she asked if Evan ever asked me for help. I realized that I knew what he wanted and gave it to him. He didn't need to ask. It looked like we would be making a lot of changes at home.

I was anxious to read up on Asperger's Syndrome. I quickly realized there were two types of books: informative ones and personal accounts. Although the former are important and helpful they are also...depressing. I was kind of sick of hearing how my child would have no friends, be bullied and become depressed. It is essential to be aware and prepared, but I needed more than that. I needed to read about progress. I needed hope. I read Look Me in the Eye by John Elder Robison first. I was fascinated at the insights I was gleaming from his childhood. There were a few parts where I felt like I was looking into my son's mind. Evan slept under his pillows every night. Robison did the same and discussed how he felt safe and comfortable underneath the heaviness of his blankets and pillows. This book inspired me to seek out more personal accounts from people with Asperger's and parents raising children with Asperger's. Success stories are the very best recipe for hope.