A Series of Moments

By the parent of a ten-year old

The one thing I am sure of is that my son is on the autistic spectrum. It has taken years to be able to own that statement.

When my son was three he went to a small neighborhood pre-school. Towards the end of his year there, his teacher asked to meet with my husband and me. She told us there was something different about our son, and since our intentions were to enroll him in public school for K1 the next year, we should begin the process of evaluations as soon as possible. I left the meeting with no idea what she was talking about. It was another three years before I started to learn.

At the beginning of 1st grade his teacher, who had also taught him the year before, approached me in the schoolyard and said, “We have to talk.” I cried then as I cry now at the memory. Thus began the search.

The school department conducted their evaluations. On the advice of other more knowledgeable parents I was guided to reject the school evaluations and get independent evaluations which we did. I first heard the word “Asperger,” from the neuropsychologist at the hospital. A second doctor who did the pediatric neurodevelopment evaluation suggested a diagnosis of High Functioning Autistic Spectrum Disorder. I continued the search wanting confirmations. Next he was seen and evaluated by two psychiatrists and an additional psychologist at the school. He was enrolled in a social skills group and has recently completed a 3 year Developmental Disorders Research Project. Today he is having testing at the school to fulfill his three-year re-evaluation requirements. Tomorrow is the I.E.P meeting. Middle School starts next year and I have no confidence he will get what he needs with what the school department will offer.

The question remains: what was I thinking and feeling when I first learned the diagnosis? It was never that one moment in time, but a series of moments. There were the late nights on the web. My first conversation with Dania at the AANE, and the first books read. The parents at the School Age Support Group offer a lot of comfort. They show me it’s not poor parenting skills at play here and help me understand him better and better. The denial creeps in and out among the clarity and acceptance. Moments of great pride and embarrassment. Early on, I had a recurring question: “Is he unable or unwilling to: stay seated, keep his hands to himself, do his work?” I now believe that he is often unable. I keep thinking that he will outgrow some behaviors: learn to be organized, understand that five minutes is not an hour and vice-versa. Be able and want to have a back and forth conversation. Know to think before he acts, or to stop talking when he has lost his listeners. Maybe even ask me a question about something I care about, or someday talk about his feelings. But it has all yet to be seen.

I’m reading The Autistic Spectrum, by Lorna Wing. It seems to be the best book to date that describes my son. He’s only ten but shows incredible promise. I can’t allow the world to snuff out his genius. My job in the next decade is to ensure that he is exposed to schools and people that see the greatness that I see in him. The next few years are critical.

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