AUTISM Painful Reminder. I didn’t know the world my friends with normal — or, as we call them, typically developing — kids lived in until recently. Two and a half years ago, my husband and I adopted our second child, Joey. And as he has grown to be a toddler, every milestone he has reached has been bittersweet–a celebration but also a painful reminder of all the milestones our 8-year-old son Nate has never reached.
Before Joey could even talk, he would point — as if to say “Hey, Mom, look at that dog over there” — the way kids do to engage you. I flashed back to the evaluation forms we filled out for Nate when we were taking him to specialists. One question that appeared on every form was “Does your child point?” It’s a major developmental step, a gesture that communicates a child’s desire to share something outside himself. Nate never pointed.
When Nate was not talking by age 2, we took him to a big New York City hospital to get him evaluated. The neurologist gave us his diagnosis almost apologetically, in a very quiet voice. I remember just two words: “Maybe autistic.”
When I stopped crying, I went to my office and called everyone I had ever met who was in any way connected to the world of special-needs kids. We made a lot of mistakes before finding the perfect match for Nate (and us): a wonderful speech therapist whom we later dubbed our captain. When she met Nate, he was nonverbal and running around her office like a self-propelled buzz saw. She looked at us calmly and said, “Let’s get busy. We’ve got work to do.”
We’ve been working ever since. In addition to continual speech, behavior and occupational therapies, we have dabbled in what one of our doctors called “the flavor of the week” — vitamins and supplements and other “can’t miss” cures. We also shelled out a small fortune for every must-have tool that Lori, Nate’s occupational therapist, mentioned even casually, including weighted vests (to help “ground” Nate) and special CDs (to help desensitize him to loud sounds). “Every time Lori opens her mouth, it cost me a hundred bucks,” my husband once said.
Recently I read Joey a picture book that contained illustrations of fruit. Joey pretended to pick the fruit off the page and eat it, offering me a bite. Again I flashed back to those evaluation forms: “Does your child engage in pretend/imaginative play?” Nate’s idea of play is to drop sticks and small stones into a drain at the playground. He could do this for hours if we let him. Last week Joey took a long noodle from his bowl of soup, dragged it across the table and said, “Look, it’s a train. There’s the freight car.” Then Nate took a noodle from his soup. He tossed it onto the ceiling.
Yet maybe because I entered motherhood through the special-needs world, I somehow feel more a part of it than I do the “normal” one. The challenges in this world are greater, but the accomplishments — those firsts — are that much sweeter.
The other day I heard Joey singing a song about trains, and I realized that I couldn’t remember the first time I heard my second son sing. I just took it for granted. With Nate, I never take anything for granted.
I remember that when Nate was 6, I was invited to hear his class put on a concert. I had no idea what to expect, as Nate doesn’t sing. What he does do is make loud repetitive noises, occasionally while rocking back and forth. But I went anyway. And when the music teacher approached Nate and began to sing a song Nate loved to listen to, Nate looked down, stared at his hands and very quietly chimed in, “A ram sam sam, a ram sam, gooly, gooly, gooly … ” The other moms rushed to hand me tissues as tears streamed down my face. I was listening to Nate sing. For the first time.
Goehner is head arts reporter at Time.
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