Right after James’ diagnosis of autism, his preschool had an end -of -the -year party. Parents talked about their vacation plans while little ones played on the swings and slides. I sat on the curb, away from everyone and glared at them. I glared at his teachers, who had first referred James for testing. I glared at the kids, who had refused to play with him all year and even now, were avoiding him. I glared at the other parents, especially the woman who had said upon hearing our news, “Oh, we wondered what was wrong with him. You seemed so normal.”
My husband motioned for me to come over and talk to James’ teacher. I didn’t even shake my head to say no. I just glared. They got the message.
My world changed the day my child was diagnosed, and I knew it. And I was mad. I felt like the diagnosis had taken away my child’s future. It had certainly taken away MY vision of James’ future.
What would be in store for him? Would he go to a regular school? Would he get married? Would he have a career? Would he be happy?
Would our family be happy again? On that day, it didn’t feel like it.
I denied the diagnosis long into the summer. I kept saying, “But my baby is smart.” And he was. The diagnosis of autism, ADHD, or Oppositional Defiance Disorder (or all three together, as James has) does not mean your child isn’t smart. It doesn’t mean he is bad. It doesn’t mean you are a bad parent.
But it does mean that he will need some help. So eventually, when I was ready, I made some phone calls.
I first called a friend who was an occupational therapist that worked with autistic youngsters. I had heard from her that “brushing’ was an approach that showed promising results in calming children who had anger issues.
“You literally take a hair brush and stroke your child repeatedly on his arms and legs,” Kelley said. Supposedly, it stimulated the nerves and promoted sensory integration.
As we talked, Kelley asked me if I had applied for the autism scholarship.
“I didn’t even know there was a scholarship,” I said, writing it down as yet another thing to look up.
“Well, all the therapies you are going to need for your child are expensive,’ she said. “If you choose us as a provider, you’ll probably want the extra assistance.”
“I need a brushing provider?” I asked.
I am not dumb. I have a master’s degree. But I felt like she didn’t know what I wanted, and I certainly didn’t know what she wanted from me. Why couldn’t I brush him? Why was it expensive? (And really, why was I brushing him again?)
“Maybe you should come in and talk to my boss,” Kelley said finally.
And that proved to be good advice. When you are new to the spectrum, phone calls can be very intimidating and confusing. There are code words and acronyms and jargon that therapists used oh-so-casually but sound completely foreign and frightening to a parent new to the spectrum. Talking to someone in person, and seeing their occasional look of sympathy and their almost-constant desire to help, is much easier. Not easy, but better.
I found that the medical field had changed, much of it due to political correctness. There were no more words like “handicapped” or “emotionally disturbed.” There were no “special ed” teachers or short buses.
Now there were “intervention teachers” for special needs children who rode on their own regular-length bus with a personal assistant that would come right to your door to escort your child to school. And how nice is that? But you have to know to ask for it first. You have to know how and who to ask for what you suddenly, horribly need.
And I had never needed so much help before. I needed help interpreting the new words and foreign world before me.
That’s when I called a therapist. I asked for someone who specialized in autism. I went every week with James, but more and more, I realized that I was the one who needed to talk and needed the therapy. He was five. He didn’t want to hear about yet another chart to monitor his behavior. To tell you the truth, I didn’t either. I just wanted someone to hear me as I grieved and questioned and cursed. I wanted someone to tell me that it would all be OK.
And it will. It will be OK. But not magically. Not easily. I learned that it will only be OK if I made it OK. I had to start. I had to start learning and stop crying. I had to start listening and stop talking. I had to start nodding and stop glaring. I had to start helping my special needs child.