Desperate

 

an excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

Matthew was always in the same spot when I came to pick him up from Merriewood preschool, shoving pieces of tan bark from the play area through the chicken-wire gate at the school entrance. No matter what the weather, his handsome face and blond bangs peeked out from his blue corduroy hooded jacket, and his rosy mouth curved in a slight smile. He was always alone.

“Someone has been looking for you,” Gretchen would say, and while Matthew looked happy to see me, it was only because I arrived on time. If I had arrived even five minutes earlier, he would have flipped out and forced me to wait by the gate while he did his bark-shoving. This was just one of the many rituals Matthew insisted on during his day, and he was collecting more all the time.

The group of mothers whom I met at Merriewood were kind to me and to Matthew, and they had included us in a few group playdates. I loved the idea of being included, but the differences between Matthew and the other children his age were amplified when we gathered. I chased Matthew around cheerfully and tried to draw him into the group, but ended up apologizing for his quirks.

“Oops, Matthew, the cookie doesn’t go in the heater vent!”

“That’s right, Matthew, light! He’s fascinated with lights.”

“I’m sorry. . . ”

In the end, I felt like the manic cheerleader who kept missing her flips.

While I was trying to move Matthew along with Dr. Davies’s suggestions, I was haunted by a leaflet I had picked up in her office, one that listed autistic symptoms. It seemed that so many of the items on the list were sprouting in Matthew every day. Those that worried me the most were the ones that had nothing to do with speech and language.

“Insistence on sameness; resists changes in routine.”

I have to go around the block before pulling in the driveway or he’ll flip out.

“Difficulty mixing with others.”

Difficult? He just won’t do it.

“Sustained odd play.”

The wheels, the drains, lining up toys, licking everything.

I watched the children who were receiving speech therapy getting better, and I resented Matthew because his gains were so much less impressive.

“Wow, Nickie is doing so well,” I commented to his mother in the speech waiting room.

“He’s made great strides,” she replied proudly. “His developmental pediatrician said that he’s never seen such a huge improvement in such a short time.”

“You’re going to a developmental pediatrician? No one told me to see a developmental pediatrician. Who do you go to? What’s their number? What else are you doing? Hold on, let me write this down,” I said, digging frantically in my purse.

“You’re doing vision therapy, too, aren’t you?” she asked. “And you’ve got to get all the wheat and dairy out of his diet.”

I wrote it all down on the back of a grocery receipt.

“How did you hear about all of this stuff?” I asked, feeling like I’d missed out on membership at an exclusive club.

“From other parents, mostly,” she said. “But if I were you, I’d get on the developmental pediatrician’s list right away. Matthew’s autistic, right?”

She threw it out just like that. I felt the blood rush to my face and my heart raced dangerously.

“I don’t, we don’t know yet,” I managed. I wanted to hide, to disappear.

“I just assumed,” said the mother. “Gosh, I’m sorry. I’m sure he’ll be fine.”

Again, I spied at Matthew from the rearview window as we drove home, and I wondered. When was the last time I looked at him and smiled proudly? When was the last time I didn’t suspect that there was anything wrong?

I needed to remember. I needed to get that feeling back, or I would go crazy.

ORDER A COPY OF A REGULAR GUY HERE.

(Read first three chapters HERE)

About the author

Laura Shumaker is a nationally recognized writer, autism and disabilities advocate. Her essays have appeared in many places, including the New York Times, CNN, NPR, and in a popular autism and disabilities blog for The San Francisco Chronicle. She’s the mother of three terrific sons, and her oldest son, Matthew, is the subject of her book A Regular Guy: Growing Up with Autism.

Comments

  1. Valerie says

    Wow! Sounds so familiar…all of it. The only time I feel relaxed is when we’re alone. I sometimes dread the grocery stores or other public places because I will have to explain away everything…It does get better as he gets older but there are always events that I can’t or don’t foresee and then it’s “here we go again”. I have learned to share, avoid and just be more tough-skinned and I dare anyone to say anything derogatory in my presence but I know sometimes I get looks and I try to ignore those who seem to have no clue. In my experience it has been the elder generation that are the least tolerant. Sean looks completely “normal” and even gets compliments on how cute or handsome he is…this can actually make things worse, not that I want my child to “look the part” but people seem to expect you to be or act a certain way based on your appearance. My daughter, who is special needs and is now grown up and married with a child, was always small for her age so when she would act a certain way people just thought she was acting her age. Sean on the other hand is tall for his age or at least looks his age, so when people see him flipping out in the store they are sometimes appalled. And of course you can’t always predict when or what is going to set them off.
    Well, thank you for your articles and hopefully I will get a chance to read your book soon…

  2. Ginny says

    Having read just a little of this blog i am moved to think that perhaps my husband and I have made a small difference in the life of a young man like Matthew. One of our employees – yes employee – is a reminder to me every time I see him that many of these individuals can flourish with the right support and opportunities. This young man’s “passion” just happened to be what our small family business was about. At the request of his family and with the support of his school we gave him a job a couple of years ago – teamed him with a “normal” person with a similar intense passion about plants. Years later this young man is still with us and has expanded enough on his interests to work in any part of our nursery. With out going into details I will say hiring him was a good move for our business and a blessing to watch him mature.

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