What one parent of a child with autism tells other parents whose children have been recently diagnosed ... and what's too painful to share.
By Tucker Trimble, Parenting
I get the call from church. I get these calls from time to time, maybe once or twice a year, from church, from friends and even acquaintances. It is always the same. A young couple has just gotten a diagnosis of "autism" for their little boy. It is always a little boy. Can I talk to them? Tell them what to expect? I get these calls because in their eyes I am a success. I have successfully raised an autistic son, who is now 29 years old.
I know my role in these calls. "You are starting a wonderful journey," I tell them. "You will meet dedicated, wonderfully caring professionals who will help you." But they don't want to hear this. They are stunned and filled with anger and sadness. They want to talk about the neighbor who made an insensitive comment, a mother-in-law who questioned their parenting technique, even family members who insist "he's being a boy." And I don't really believe the journey they are starting is wonderful. I say that because the reality is just too sad to imagine.
Like most of these parents, we received the diagnosis when James was 3 years old. At that age there is no hiding it. No more thinking those behaviors can be couched into terms like "late bloomers." No more "wait and see" for another 6 months.
I caution these new parents not to assume all unwanted behavior is autistic behavior. I made this mistake myself. Sitting with James and his older sister in Dunkin Donuts one morning with a friend, James got up on the attached bench of seats and began walking along them. I was horrified and bundled both children in the car. "I can't even take him to Dunkin Donuts!" I cried over the phone to my husband. Years later my younger son did the same thing. It wasn't autistic behavior, it was boy behavior.
"You will meet remarkable people on your journey who will enrich your life," I might tell these new parents. This is really true. Like all handicaps, there is a wide range of abilities, and one couple I met had a son who was classically autistic. Classically autistic can mean that you never speak, never recognize your parents, never become toilet trained. These parents were determined to take their gangly, uncontrollable teenage son to Disney World. They had to sedate him for the flight.
I also caution these parents about not recognizing and accepting the pretty good in life. For a long time, years and years, really, we held out for the perfect. If James could not handle a Memorial Day picnic, we didn't go. Friends used to ask us to go skiing in Vermont. They would help with James, they said. But we couldn't go with him, and leaving him with a babysitter was unthinkable. The invitations dried up.
"Look for the best school placement possible," I tell these new parents. But things have changed in the public school over the past 29 years. James was the leading edge of the huge wave of autism diagnoses. My other three kids don't believe me when I tell them that when we got the diagnosis I had never heard the word "autism." There was no Autism Awareness Month, no magazine covers, no blue light in the Empire State Building, no rubber bracelets or magnetic bumper stickers. My husband finally told a colleague at work about James, haltingly speaking of the trials we were going through. "I understand," his friend told him. "I have an artistic son too."
Since my husband commuted for work into New York City and was gone for more than 12 hours each day, looking at school placements fell to me. At that time they had out-of-district choices, something that is not the case today. There are more than enough children in districts now to make up several classes of autistic kids, but when James was moving through his educational years we had more outside options. "Be prepared to fight for what you think is best," I tell the new parents. When I would find a school that I wanted for James, occasionally we were told by the school district that it was too expensive. My husband lives for news like that. He jumped into action, hiring lawyers and threatening to sue. James always got his placement. Looking back with somewhat dispassionate eyes I wonder at the unbelievable expense of these placements. I don't doubt that these options are not available today.
I tell the parents to find the joy in their child. Some of these kids have unbelievable capabilities in certain areas. Splinter skills, they call them. James had them too. At the age of 10 he had memorized the entire set of the "Little House" books. My husband thought this was incredible. James, he would ask, Chapter 3 in On the Banks of Plum Creek—what is the fourth sentence? "All along Plum Creek the birds were talking," James would recite in his clear sing-song voice. That's incredible, the response would come. But I hated these skills. What was the point? We can't even take him to McDonalds, I would think, unless we could withstand the sight of him helping himself to other people's French fries.
You would imagine that over the years the heartbreak lessens, but this is not the case. Of course, I don't tell the new parents this. It is hard to accept myself. It frightens me. Last summer in the Michigan resort town where we all gather each year, my dear sister-in-law announced happily that we were all there and that we should have a family picture. But James was not there. James is almost forgotten by my family in the joyful muddle of graduations, weddings and grandchildren that now occur yearly among the extended family. For James now lives permanently in New Haven, Connecticut, under the auspices of the wonderful Chapel Haven. Against all odds, he has a real part-time job in the mailroom of a bank. He lives fairly independently by himself in a condo, and takes the bus downtown every day to work. He attends weekly symphony concerts at Yale with other Chapel Haven "clients."
I lock myself in the bathroom and cry harshly, painfully, for a few minutes. Then I put on my Ray-Ban aviator sunglasses and go out and gather my other children with the cousins. Then I take the damn picture.
I wait a day or two, or a week. Then I make the call. "You are starting a wonderful journey," I begin.
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