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An Excerpt from A REGULAR GUY: GROWING UP FROM AUTISM

I stood in the dressing room of Gap Kids with Matthew and Andy, clothes heaped all around us, trying to find just the right outfit for Matthew’s first day of kindergarten. Matthew squirmed and laughed as I wrestled shirts and shorts over his busy body. When he dove under the door of the fitting room dressed only in his Batman underpants, I grabbed him by the leg and pulled him back in before he made a scene. But the shopping trip was over.

“I think the red shirt looks neat,” said Andy. “Can we go now?”

Andy had been an amiable two-year-old when family preoccupations switched abruptly from Halloween costumes to what to do about Matthew. He took walks with me while his big brother was in speech therapy and broke the silence of a droning car ride to the child psychologist with “Well, it’s a beautiful day today, isn’t it?”

His favorite outfit was a pair of khaki corduroy pants, a turtleneck with bears around the collar and down the sleeves, and a pair of shoes with cars on them—a miniature man who spoke in full sentences.

“How old is he?” astonished passersby would ask when they overheard him conversing with me on our walks.

Now, at three, he was already a skilled mediator.

Any woman in her right mind would not go shopping with two boys, aged three and five, but I was a woman on the edge, having learned just days before that what I’d feared and suspected was true. Matthew was autistic. The official diagnosis of autism came from another specialist who was a colleague of Dr. Hoffman’s.

“Back-to-school shopping, eh?” asked the saleslady, handing me my bag. “Where do your kids go?”

I felt my face flush. “The little one goes to preschool at Merriewood, and Matthew goes to Burton Valley. He’ll be in kindergarten.”

“You’re kidding! My daughter starts there too! She got Mrs. Miller. How about your son?”

“He’s in the special class with Miss Adams.”

“The special class?” said the saleslady competitively. “I thought the gifted class didn’t start till the second grade.”

“The special class for kids with learning disabilities,” I clarified.

“Ohhh,” she said, coolly examining Matthew, who was now licking the mirror next to the register. “Bless his heart. Bless your heart, for that matter!”

While we had suspected for some time that it was autism, the news still leveled us and made us question whether we were doing the right things. Was I wasting my time driving back and forth to psychologists and speech therapists, time that could be spent doing something more effective? And what was the right thing?

There had been a lot of talk about the Lovaas early intervention program for children with autism. It was a behavior modification program designed to enhance the development of communication skills and represented a huge commitment involving forty hours a week of intensive one-on-one therapy with trained tutors. I had heard reports, however, that it had helped some children totally recover from autism. Should I seriously consider this?

“Matthew is too old for the program,” said the new specialist, “and too high-functioning. The program is most successful with children up to three and a half years, before stereotypical and disruptive behaviors become established. And,” she added, “there is no cure for autism.”

I believed that the psychologist was making progress with Matthew, but Peter wasn’t so sure.

“A woman in my office has a friend whose cousin is autistic,” Peter told me, glancing at Dr. Hoffman’s latest bill, “and she said psychotherapy doesn’t work for autistic people.”

“Not all people with autism are alike, Peter, and we don’t know anything about the cousin’s case.” I started crying. I fell apart easily these days.

“Dr. Hoffman has been helping Matthew a lot,” I wept. “He is talking more and is communicating his feelings better.”

The most helpful aspect of Matthew’s visits with Dr. Hoffman was what I was learning about Matthew and his autistic brain. I was particularly curious about Matthew’s rituals and his insistence on sameness.

“Matthew’s internal world is very confusing,” Dr. Hoffman explained. “He depends on routine and rituals to restore order.”

“What about his random, impulsive behavior?” I asked the doctor. “Why does he bite kids in his class, apparently out of the blue? Why does he throw toys and rocks at other children—and then laugh?”

He explained that Matthew’s impulsive ways were his attempt to connect with people. When he bites someone or throws a toy at them, he gets a reaction, albeit a negative one. Dr. Hoffman would work on helping Matthew communicate appropriately, with language.

On Matthew’s first day of school, I dressed him in his new red shirt and blue shorts and white Velcro shoes. I combed his hair and took a picture of him for the scrapbook, hoping that someday I could say, “This picture was taken on your first day of kindergarten, just months before we cured you of autism!” His expression in the picture wasn’t happy or sad but passive, like a man waiting in line at the bank.

I arrived at Matthew’s classroom fifteen minutes early, hoping that I could watch his new classmates arrive with their mothers. I had been feeling so isolated and was anxious to connect with these women who, like me, had been through so much.

But Matthew and I walked into a full classroom, with no mothers in sight.

“Good morning, Matthew!” said Miss Adams, Matthew’s fresh-faced young teacher. “It’s nice to see you again. Come on over and we’ll introduce you to your classmates.”

There were six children in the class including Matthew—four boys and two girls. None of them, except for the blind boy, Adam, looked disabled as they sat at their desks.

“Are we late?” I asked.

“No, they’re early. On the first day, the bus drops the kids off early.”

My heart sank.

“They all came on the bus? Even on their first day of kindergarten?”

Miss Adams nodded. “Will Matthew be taking the bus?”

I had great memories of my mom driving me to and from kindergarten. I was always so excited to see her by the classroom door waiting to hear about my day.

“No, I like driving him,” I said. “I hoped I could meet some of the moms today. I thought since it was the first day—”

“All of the parents should be at Back to School Night next week,” said Miss Adams.

 What a bunch of cold women!

I tried to hold back my tears, but I felt so undone—not just because the mothers didn’t show up, but by the whole scene.

 

“You must think I’m a nut!” I said, wiping my tears.

“Mommy cries a lot,” Andy confided to Miss Adams, “but she’s fine.”

“All moms cry on the first day of kindergarten,” said Miss Adams, smiling.

“Goodbye, Matthew!” I called from the doorway, but he was already busy with the water fountain. He had recently added a new twist to the water fountain routine. While one hand was under the stream of water, the other was flapping, and he stopped intermittently to jump and dip down to touch the floor, laughing and drooling. Dr. Hoffman told me this was called self-stimulating behavior, and Matthew used it to cope with an overstimulating environment.

“Is he having a fit?” a mother at the park had asked me over the summer.

“No,” I responded. “He’s just overwhelmed, and he’s working it out.”

Once in the car, I put on a smile for Andy.

“Do you want to go see Grandma?” I asked.

“OK,” he said, peering up at me. “You’re fine now, right, Mommy?”

“I’m better than fine,” I said, hugging my insightful, sympathetic three-year-old. “I’m great!”

***

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AN EXCERPT FROM A REGULAR GUY: GROWING UP WITH AUTISM

I worried about how Matthew would fit into the new neighborhood. I thought about circulating a flyer that would explain him and his behavior, but I was so preoccupied with my mother’s health that I never got around to it.

My father would later admit that he’d thought she would die the day he’d taken her to the emergency room from what turned out to be a blood clot in her lung and pulmonary fibrosis.

“But with the right medicine, respiratory therapy, and rest,” said my ever-reassuring father, “she’ll be on her feet in no time.”

Our move to the new neighborhood coincided with Matthew’s latest obsession, one that made us question the efficacy of Luvox, the drug meant to curb his obsessive-compulsive symptoms—balloons. I was guilty of launching the balloon phase when I started buying them for him as a reward for a good day at school. Then one day, Matthew saw an airplane fly overhead with a banner attached to it, and he started taping signs to his balloons. He would let the balloon go and imagine where it might land.

“This is a grandma’s all better now balloon,” he said once. “It’s going all the way to Carmel.”

I became keenly aware of how many damn balloons were everywhere. If I saw a balloon around town, I would make a mental note and take a different route when driving with Matthew.

Why? Because I knew that Matthew would not rest until any balloon in his path was freed. One time, he impulsively cut a balloon loose near a freeway, and it dipped down close to the speeding cars. I held my breath, shuddering to think of the disaster he could have caused.

One sunny Saturday, I was about to make the rounds of the neighborhood to search for Matthew, who had disappeared, when the doorbell rang.

Uh-oh.

I opened the door gingerly and saw my neighbor Sarah, hands on her hips, looking very angry. Sarah was a stunning blond in her mid-thirties with a handsome husband and two small sons. I had met her briefly when we had moved to the neighborhood a few months before, but we never connected. I had attributed this to our age difference—and to Matthew.

“I think your son stole a balloon off our mailbox,” she growled.

“Yes, I’m sure he did,” I said. “I’ll go get another one right now.”

My keys and purse in the front hallway, I started toward the garage.

Sarah looked surprised by my cooperation, but a little frustrated that she couldn’t finish her diatribe. I paused and let her finish.

“I have heard he steals a lot of balloons and—”

She stopped, seeing the anguish on my face.

“I know,” I said, my voice cracking. Don’t start crying, Laura. Just keep it together. “I’ll be right back with the balloon.”

And off I went, to the party store where they knew me well, feeling stupid. As I drove off, I saw Sarah stomp back to her house where a few couples were standing. I imagined their conversation.

“You went to old lady Shumaker’s house? Wow! What’s she like? Did you tell her off? Good! Where’s she going now?”

I pulled up to Sarah’s house eight minutes later with a red balloon and rang the doorbell. No answer. I heard the sounds of a birthday party behind the gate to their backyard and slipped through it. As I passed the garbage cans, garden tools, and blue plastic wading pool, about sixty multicolored balloons came into view. There were also streamers and happy birthday signs and a large piñata, but the sight of the balloons—she could have replaced the stolen balloon with one of them—floored me.

Sarah strode over, unfazed.

“Thank you,” she said curtly, snatching the balloon.

I got the hell out of there.

After this incident, I tightened the reins on Matthew and avoided driving by Sarah’s. “Tightening the reins” meant constant surveillance, which was not appreciated by my son. If I was distracted by a phone call or even a sneeze, Matthew would make a run for it. I tried to put myself in the position of Sarah and the other neighbors and could imagine them discussing us.

“I know the kid’s got a problem, but they ought to. . . ”

Ought to what? I had investigated tracking devices, but at that time they were only available for military and law enforcement. I thought a gadget that would deliver a beeping sound or a mild shock might work, but Dr. Hoffman advised against it. I had friends who monitored their kids with walkie-talkies, but they only work when both parties agree to stay in touch.

About a year after the Sarah incident, I got a call from another neighbor, Jean, a good friend of Sarah’s, inviting me over. Was this an intervention? I thought. No, she and Sarah were having a neighborhood coffee and could I join the group? I said yes right away, thanked her, hung up the phone, and burst into tears.

Matthew was not my only worry at the time. My mother’s health continued to deteriorate, and she now relied on oxygen apparatus to keep her going. I also worried about Andy, who had always been outgoing, but who had withdrawn considerably in the last year. He continued to do well in school and was well-liked, but he’d stopped having friends over and refused invitations. He had grown weary of the daily grind—the explanations, the outbursts, the lonely times when we were so preoccupied with managing Matthew. He didn’t want to bother us with the ups and downs of his life. Peter and I asked Andy if he wanted to talk to a counselor about his feelings, and he said he did not. Looking back, I think he wanted to be removed from the category of those who needed therapeutic intervention, like Matthew.

While I needed my mother more than ever, I tried to protect her from my escalating difficulties with Matthew and saved them instead for my sessions with Rebecca. I thought I was a convincing actress, but Mom picked up the strain in my voice in our daily 8:00 a.m. call the morning of the neighborly gathering.

“Oh! And I’m getting together with some women in the neighborhood!”

“You mean the ones that don’t like Matthew? No wonder you sound tense.”

She went on to tell me that obviously these women could see what a wonderful person I was and were coming around.

“They need you more than you need them!”

She encouraged me to take a breath, have fun, and not to apologize too much for Matthew, her sweet grandson.

The morning of the gathering, I told Peter that I thought I’d skip it and go to the gym. As he left for work he hugged me and told me to go and have fun, and that I would be the best-looking woman there. In the end, I decided I would go and show these people that I was a wonderful person, once voted most friendly in my high-school senior class, and that I was doing my best in an arduous situation. But I was in the mood to blend in with the crowd, not to be seen as the mother of the strange kid.

I laughed to myself as I approached Jean’s house with flowers from my garden in hand. Laura, your days of blending in are over. I marched forward, bolstered by the memory of my mother’s encouraging words and Peter’s loving smile as he had left for work that morning, knowing my trepidation.

I had visualized the gathering, walking in: a conference table in the living room, being encircled by the women of the neighborhood, fielding accusations as in a Senate hearing. Instead, I was absorbed into a group of friendly, good-looking women who ambled around a granite island in the kitchen, eating muffins, drinking coffee, and laughing a lot.

We talked about paint colors and kitchen remodels, babysitters and vacation spots. I tried to groove with the scene, but I had an overwhelming urge to clear the air by making a public apology about Matthew’s disruptive behavior, and to take the question-and-answer session about which I had fantasized. Then I remembered my mother’s advice and held back. The morning wasn’t just about me.

After about an hour the group started to break up, and I started to head for home. I thanked Sarah and Jean, and as I left, Sarah called out to me.

“How is Matthew doing?” she asked.

Don’t cry, Laura.

“A work in progress!” I joked. “I hope you’ll let me know if he bothers you, I’m always available—”

Oh, no. She’s coming toward me and being nice. “It must be so hard. Can I ask you a question?”

We sat on Jean’s front porch, and Sarah asked me: When did you learn he had autism? How do his brothers handle it? I noticed he likes to mow lawns—maybe he can mow mine sometime. We talked for an hour. I teared up, but I didn’t cry. A few other women stopped by on their way out and joined in—they all made me feel like a hero, not like the crazy Shumaker lady with the weird kid.

Once home, I collapsed on the couch, relieved and wrung out. It had been a healing morning. I was grateful for the way it turned out, even more grateful that it was over. It occurred to me that my neighbors were hungry for information, and that my appearance this morning was a bridge-builder. They had a clearer picture of me, and of Matthew. I was approachable now, and so were they.

The next day, I called Jean to thank her.

“You are so welcome. I was actually just about to call you. Matthew is standing in front of my house, and a police car just pulled up to talk to him. You might want to run down and see what’s going on.”

I ran down as fast as I could. Matthew and the officer were all smiles.

“Hi. I’m his mother,” I said breathlessly.

“Hello, I’m Officer Jones. Everything is fine. Matthew was just asking me if I take care of bad guys,” he said, winking.

He got it.

“Goodbye, Officer Jones,” said Matthew, grinning.

“Remember what I told you, Matthew,” said the officer, pulling away, “No more throwing rocks at cars, especially police cars!”

I was relieved that the police officer had been kind, but frustrated that Matthew’s negative method of making a connection had succeeded. Would he throw a rock again in an attempt to make a friend? I looked over and saw Jean standing on her porch.

“You OK?” she asked, and I just rolled my eyes. “Hang in there,” she said, her front door shutting behind her.

An Excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

It took me over an hour during a cold December rainstorm to get to Brian Hoffman’s office near Stanford University. Matthew studied the windshield wipers during the drive, and Andy slept. When Dr. Hoffman greeted us in the waiting room that he shared with two other therapists, my eyes filled with tears, and the ordeal of getting there was immediately forgotten.

Dr. Hoffman’s redwood-paneled office was tidy but warm with a big leather couch and chairs. A bookcase contained a mix of professional books and manuals, child development tomes, and children’s stories. In the corner was a play table that converted into a sandbox.

We spent just a few minutes getting reacquainted, and then Dr. Hoffman took Matthew’s hand.

“Let’s do some drawing, Matthew,” he said. “Your mom and Andy are going for a walk. They’ll be right back.”

“Right back,” said Matthew, still echolalic despite months of speech therapy.

“We’ll see you in about an hour,” Dr. Hoffman said, closing the door behind him.

***

 

“What do you think?” I asked the doctor anxiously when I returned. “Do you think it’s serious? Do you think it’s autism? Or something else? And if it is autism, is there some way we can turn things around?”

Dr. Hoffman told me that Matthew did display many autistic traits, but that it would be premature to diagnose him just yet.

“He may have been traumatized by an event in the family, such as Andy’s birth, which caused him to withdraw,” he said while watching the two brothers play side by side.

“Could it be something I did? Or Peter? Maybe a babysitter that was mean to him?”

I started to cry.

“I am not saying that anyone did anything. It may just be that Matthew is a sensitive child, and that he has reacted to normal family events by withdrawing. If that is the case, play therapy could help draw him out.”

He proposed two sessions a week for Matthew, and monthly parent appointments to discuss Matthew’s progress.

Wow, that’s gotta be expensive! And an hour drive each way!

***

I drove home in turmoil. This would be a big commitment. But I knew that Dr. Hoffman wouldn’t suggest it unless he believed it would help. He’s the expert.

But they’re all experts. Who do I believe?

Maybe insurance will cover this. Maybe my parents will help. How would I do it?

Preschool Monday, Wednesday, and Friday. That’s when I’ll work. Then when I pick him up from school, we’ll run to speech therapy. Tuesday and Thursday will be Dr. Hoffman’s days. I’ll keep Andy up until it’s time to go and he can nap in the car. Maybe I’ll have to quit my job. Can we afford it?

When I went over Dr. Hoffman’s theory with Peter, he grew pale.

“You’ve got to be kidding! Traumatized? Give me a break!”

“The way he explained it was, some children are more sensitive than others and react to regular things by withdrawing.” I struggled to explain what Dr. Hoffman had told me today, and finally gave up. I had to admit it sounded like psychobabble, but I needed to trust someone.

“Just call him and get it all from him,” I said, throwing up my hands. I was exhausted, utterly confused, and scared.

“I’ll call him,” Peter said, “but there is no way we’re going to do this. Can’t you find anyone closer?”

“Peter,” I said, crazed, “I just can’t go to another doctor, answer all the same questions in another freaky office, and put Matthew through it—again!”

My parents came over for dinner that evening, and the four of us churned over all of the advice we had heard since Matthew’s first evaluation less than six months before.

“All I want,” said Peter, “is for one person, one expert, to say ‘Here is what is wrong with Matthew, and here is exactly what you should do.’”

“It seems that you would be smart to try everything within reason,” said my dad, “and step back and see what’s working. And by the way, just raise your hand if you need help with this. We mean it. And I’m sure your parents would do the same.”

I looked at my mom, who was looking out the window at Matthew while he played with the garden hose. She seemed so sad.

“I wonder what he’s thinking about,” she said. “I wonder if he knows we’re worried about him.”

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An excerpt from A Regular Guy: Growing Up With Autism

“Hi Laura. Just giving you a heads-up. There was a program last night on this cable channel about miracle treatments for autism. Something about a hyperbaric chamber, and there was another treatment—chelation, I think they called it. They also mentioned the diet thing, so you might be getting some calls. I’ve already gotten a few. Talk to you soon!”

This first phone message, from my brother Scott, was followed by three others, all from well-meaning friends.

I have grown to dread the news reports on autism breakthroughs and the phone calls that followed them because of the way they make me feel. Angry. Offended. Insecure. Guilty.

I feel angry because I have tried so many treatments already: speech therapy, psychotherapy, auditory training, behavior modification, psychotropic drugs. Can’t people see how hard I’ve worked?

I’m offended because they can’t accept Matthew as he is. Can’t they appreciate his honesty, his humor, and the pureness of his soul?

I’m conflicted. Maybe I should be open to some of these new treatments. Maybe they will improve his life. I followed every lead when he was young; I tried everything. Have I lost my resolve, have I become lazy, are my weariness and skepticism shortchanging Matthew?

I feel insecure because perhaps I haven’t done enough, and friends and family think that I could have done more. “If it were my child—”

I feel guilty. Just plain guilty. Since he’s not cured, maybe I just haven’t done enough.

But then clarity returns.

The friends and family who call me about new treatments have seen me struggle through the years and have heard my horror stories. They genuinely want to help. Haven’t I shared the good stories, the heartwarming stories, too?

Did I tell them how I lay awake the night Matthew was born just to hear the squeak, squeak, squeak of the bassinet being rolled from the nursery with my hungry baby boy?

“Can you leave him here with me now?” I had asked, and the nurse had smiled and said yes. Yes, of course.

Had I shared my joy when Matthew and Andy, at age three and one, ran out to greet their dad home from work with gurgly, contagious laughter? Maybe not. After all, it was a common thing in most families, but precious in ours for the sibling joy and sharing it showed, a sharing we feared was fleeting.

Or the day when Matthew was twelve, and I had scolded him for pushing his brother John into a swimming pool fully clothed. For the first time, Matthew showed genuine remorse. He doggedly repeated his apologies until he was satisfied that he was understood and forgiven. An ordinary occurrence in most families, but a rare victory in ours. Maybe I kept this to myself.

And then when Matthew was fifteen, I went to the skateboard store to buy a shirt for Andy. There was Matthew behind the counter, pretending he worked there.

“May I help you?” he inquired. Matthew’s helper, Ben, browsed nearby, pretending to be a customer as well. Have I told others how this made me feel—to see my damaged son trying desperately to be the responsible worker?

The most crippling aspect of Matthew’s autism is his social awkwardness. If we could put him in an oxygen chamber and smear him with cream that would suck the metals, good and bad, out of his body, would he become suave and understanding, insightful and clever? Would he learn to read faces and gestures and react appropriately? Would he be sympathetic?

Would he still be Matthew?

Matthew is now an adult, and I accepted long ago that he will not be cured of autism. I want others to accept this, too. It is not easy to be Matthew, someone who wants desperately just to be a regular guy. But I admire him for trying.

A look back at “The Dark Ages” when early intervention was a guessing game:

An excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

 

1993

During winter break in Matthew’s first-grade year, and without the support of the experts who were currently working with Matthew, Peter and I decided to try the miracle cure: Auditory Training.

“Did you see that girl on Oprah?” I asked Dr. Hoffman. “I don’t usually watch Oprah, but one day I flipped it on while I was folding the laundry. Anyway, through this amazing treatment, this girl went from autistic and functionally retarded to gifted.”

The theory behind auditory training, simply put, was that some children who suffer from learning and behavioral disorders, including autism, are hypersensitive to certain frequencies of sound. Auditory training was designed to normalize hearing and the ways in which the brain processes auditory information.

“We figured that since Matthew is hypersensitive to sound, auditory training might cure him. Do you know anyone who has tried it?”

Dr. Hoffman had not seen the girl on Oprah, but Christy, the speech therapist, said she knew some parents who had tried the training.

“It’s very expensive,” she added. “Some claim that they have seen some improvement, but none of my clients has been ‘cured’ by it. There has been no clinical proof that it works, so I’m skeptical.”

“Let me put it this way,” I said. “If it were your child, would you try it?”

“No.”

But Peter and I were already carried away by the wave of information we had gathered on auditory training since the young girl’s appearance on the Oprah show. What if Matthew’s autism was caused by hypersensitivity to sound, and what if this one treatment improved his life forever? And how guilty would we feel if someday, some specialist said, “If only he’d had auditory training when he was six. . . ”

“I know that if I heard everything as acutely as Matthew does,” Peter said, “I’d have a hard time focusing on anything else. I’d go mad.”

Matthew started the training just two weeks after the birth of our third son, John. As soon as it became clear that Matthew’s disability would be lifelong, I was desperate to have a third child. “We don’t want our boys to be viewed as ‘the normal one and the one with the problem,’” I told Peter. “Can you imagine what a burden it would be for Andy down the road?”

Peter agreed with the idea of having a third, but thought we should find out if we were at risk of having another child with autism. The responses from the experts were mixed, and Peter was ambivalent, but I pressed, reasoned, and begged and finally we took a chance. John was the most beautiful of my three babies and appeared normal, but we would have to wait a while to see whether he had escaped autism.

The closest auditory training practitioner we could find was in Marin County, about an hour’s drive north on a good day. Peter agreed that he would be in charge of taking Matthew to and from the ten-day program, during which Matthew would listen to music wearing headphones fitted with a special electronic device. The device filtered frequencies from the music, sending modified sounds into Matthew’s ears and training his auditory nerve to process sound normally. Each day of the training, Matthew would wear the headphones for thirty minutes in the morning followed by a three-hour break, and thirty minutes in the afternoon.

“Matthew and I can go out for lunch and for a hike between sessions,” said Peter. “It will be fun.”

The training facilitator suggested that before the training we put headphones on Matthew at home as much as possible to get him used to it.

“And if he doesn’t get used to it, don’t worry, we can make the headphones so loose that he won’t know he has them on. And we have plenty of toys to keep him busy.”

“But will the treatment work if the headphones are loose?”

“Oh, don’t worry, they won’t be too loose!”

Even with a two-week-old baby, I went along for the ride the first day of training. The “facilitator,” who was also a psychotherapist, had sounded quite professional on the phone, but I wanted to meet her in person. “I work with my husband,” she had said. “He is also a therapist, and great with kids.”

 

The husband greeted us when we arrived and ushered us into his office. He was tall and thin and wore a full beard, Birkenstocks, and a leather vest over a paisley shirt.

“It smells like garbage in here,” said Matthew. The husband opened a window.

The office reminded me of a low-rent version of Dr. Hoffman’s.

Instead of a sleek, leather chair there was a beat-up brown recliner, and next to it a large beanbag chair with toys strewn all around it. I looked at the certificate on the wall.

“You do hypnotherapy, too?” I asked, and he nodded.

“That’s my bread and butter. My wife will give Matthew an audiogram before we start, another during the middle of treatment, and then a final one when treatment has been completed. We’ll make adjustments to the filter along the way to get the best result. You should see some results immediately following the last treatment, but the full effect won’t be apparent until six months after the treatment is completed.”

“Do you guarantee your work?” asked Peter.

“Yes. After the six-month period, we’ll do another audiogram and more treatment if he needs it.”

If you’re still here in six months.

“Can I see the headphones?” I asked. “I’d just like to see how they fit Matthew.”

The husband sat Matthew in the beanbag chair and put the headphones on him. Then he turned on the music and Matthew started laughing—a crazy, scary laugh.

“See?” said Peter. “He likes it.”

I knew what Peter was thinking. We have already put $1500 into this thing, fifty percent of the total, and damn it, it’s gonna work.

“Where is your wife?” Peter asked, and a red-headed beauty wearing a gauzy peasant dress came floating in breathlessly.

“Sorry I’m late,” she said. “My cat is sick.”

Yeah, well I’ve got a two-week-old baby, and I’m early.

“Do you have any questions?” she asked.

The husband had answered our questions, so we said no.

Peter and I took our seats in the waiting room. Baby John slept, and Andy opened his new coloring book. I glanced through the vertical blinds into the room where the wife was giving Matthew his audiogram, the husband by her side looking befuddled.

“Peter?” I whispered. “Look.”

“Oh, man,” he sighed. “If this pair cures Matthew, that would be the miracle.”

 

Peter and I studied Matthew carefully once he had completed the training, watching for his reaction to sounds and for any improvement in his behavior.

“I think he’s little better,” said Peter one evening as the family sat down to dinner. Then as if on cue, Matthew jumped up from the table and ran outside. We followed him and found him smiling intensely as he looked skyward at the white trail of an airplane. Then he jumped up and down, laughing and drooling, his hands flapping.

“They said we might not see the full effect for six months,” Peter said as I shook my head.

“Yeah, we’ll have to mark that on the calendar.”

Any improvements that were gained by auditory training, real or imagined, were erased in an instant on the third Monday of Matthew’s second-grade year, two months after the magical six- month deadline. Someone pulled the school fire alarm, and Matthew refused to take his hands off his ears—for three whole months. A special meeting was called at school; even Dr. Hoffman attended, but no one was able to get Matthew to take his hands off his ears.

Finally, Matthew’s Grandpa surprised him at school one morning, took Matthew’s wrists and said, “Matthew. It’s safe now.”

And that was that.

NOTE:

Auditory Training (Now referred to as Auditory Integration Therapy) is still available today, and while some individuals have reported improvements in auditory processing resulting from AIT, there are no credible studies that demonstrate its effectiveness or support its use.

To learn more about treatment for autism spectrum disorders, CLICK HERE.

 

 

 

 

A day in the life of an autism mom is a LONG day, but some are longer than others. Some are so long that it is almost funny.

Will you tell me the story of one of your long days?

500 words or less, please. You can even do it in list form if you like. I’ll be posting winners on my San Francisco Chronicle Autism Blog. Winners also get a copy of my book. There will be honorable mention prizes, too, but I haven’t figured out what they are yet.

Please email them to me and paste them into the body of the email-NO attachments please. l shumaker AT pacbell DOT net

Here is a sample of one of my long days. It’s an excerpt from my book A REGULAR GUY: GROWING UP WITH AUTISM

 

It is day five of Matthew’s spring break visit. Here is how the day unfolds.

I am lying in bed at 6:30am waiting for Matthew to stir. Peter has left for work, and my sons John and Andy are off skiing with friends.

At 6:31, I hear the front door slam, and know Matthew has gone out to watch some gardeners work a few houses down. It is a cold, drizzly morning, but I know Matthew is wearing shorts and a t-shirt that reads SHUMAKER LANDSCAPING with our phone number below.

At 7:30, I am up and ready for Matthew’s breakfast ritual. He will make pancakes, stack them on a serving plate, then go in his room and sing a song and say a morning prayer.

Just like at Camphill.

After breakfast, Matthew tells me his plans for the day.

“First, I want to go to the mall with Ben, then I want to go to work at Dorothy’s.”

Ben is a student at a nearby college, a friend for hire when Matthew is home for breaks.  He has a heart of gold and movie star good looks, making trips to the mall for Matthew a wonderland of pretty, flirty girls who would normally avert his hungry, pleading gaze.

”Matthew, Ben is on spring vacation, and I don’t know about Dorothy. I’ll call her. But first we have to go to the dentist.”

Matthew insists on calling Dorothy. He knows that he is more persuasive than I. After a few minutes, he hands the phone to me.

“Sure Matthew can come work in the garden. But first I’m waiting for the vet to come to euthanize the dog.”  I tell her how sorry I am Perhaps Matthew can work for her another day, but Dorothy says today would be fine, after they have taken the dog away.We decide not to tell Matthew about the dog or he would ask questions.

“How old was the dog? Where was I when he died? What was I doing? What were you doing when the dog died?”  All the while oblivious to weeping family members.

I drive Mathew to the dentist, and he tells me to wait in the car; he wants to go in himself like a regular man. After 30 minutes, Matthew comes out. The dentist would like to speak to me. Matthew follows me in and sits in the packed waiting room while I talk to the dentist. It turns out I need to schedule a time to have Matthew’s wisdom teeth removed.

On my way out, I see that Matthew is intently reading, “The Berenstain Bears go to the Dentist”.  By the expression on his face, you’d think he was reading Dostoevsky.

“Time to go, Matt.”

“I’m not finished with my book. I’ll meet you in the car when I’m finished.”

I scan the faces in the waiting room, all stifling laughter. I flash an embarrassed smile and walk out to my car.

After five minutes, Matthew gets in the car.

“Can we call Dorothy now?”

”No…she said she’d call after her…doctor’s appointment”

It’s 9:30. The dog is to be put to sleep at 12:30. I need to keep Matthew busy for three and a half hours so he won’t pester the grieving family.

He goes to work in our back yard, mowing, trimming, blowing and raking while I do laundry, pay bills and vacuum, stopping every 10 minutes to check on him. At around 11:30 Matthew stomps into the house, his shoes caked with grass clippings.

“We need to go to the hardware store. I need oil for the lawn mower.”

Off we go. I walk in with him but give him space. He appears with the oil but I don’t have cash, and have to pay with a credit card. As I approach Matthew, he yells,“Let me buy this myself! I’m a regular man!”
“You’re a regular man with no money and you need me to pay for this. Be quiet.”

He points at an elderly man in line. “You don’t see him shopping with his mother!” Matthew shouts, and once again, I’m on stage.

“Shape up, or we’ll leave the store and there will be no more gardening today,”I say.

We pay, and as we walk out, the motherless elderly man winks at me sympathetically, a slight kindness that makes all the difference in my day.

Once home, I take a moment to fold some laundry when Matthew enters the room, looking shifty.“Dorothy called” he lies.

I never heard the phone ring.

“Did you actually call Dorothy?”

“How did you know?”he counters, looking sheepish.

“I just know”, I say with a sigh.

“She said we can go over now.”

I call Dorothy to verify the facts. The lifeless dog is being carried away on a stretcher at the moment. Could we wait a little while?

I hold Matthew off till 2:30, about an hour post mortem. Dorothy’s twelve-year-old boy is mourning in his room, and her teenage son and daughter bravely greet Matthew, who tells them– “You better big time not mess with me.”  Dorothy tells me I look tired, and we talk briefly about Copper’s final hours. I promise to pick Matthew up at 3:45; then I drive home and collapse on the couch, waking at 3:30. Time to get Matthew.

Once home, Matthew goes in his room and listens to music, his favorite, the Beatles. I plop down on the couch and turn on Oprah. Lisa Marie Presley and her mother are guests. The mother has had a lot of work done, and she looks younger than her daughter in a freakish way. What’s with her upper lip? I hear Matthew emerging from his room, and he comes in to see me, tears rolling down his face.

“Do you hear this song?” he asks, and I listen…and hear Paul McCartney singing mournfully. “All the lonely people…where do they all belong?”

“Am I kind of like Eleanor Rigby?” he chokes.

“Awwww” I reply, rocking Matthew in a hug, telling him it hurts to be lonely, doesn’t it, and reassuring him that he belongs, is needed and is loved. I feel pain in my chest, the kind of pain that a mother feels when she knows she can’t fix an aching heart.

“Who loves me?” he asks, sobbing.

I tell him a long list of all the people who love him. I tell him to go wash his face, and while he does, I call Peter, my father, and my brother, and ask them to call Matthew and tell him how great he is. They do, and Matthew recovers. He makes plans with all three men…Going out with pizza with dad, going to the beach with Grandpa, working with Scott in the garden. I am so grateful for all of them, and proud of Matthew for pulling himself together. Soon, he is in the back yard, remowing a patch of lawn, raking and sweeping. I take a deep breath. Now what?

Peter comes home at 6:30. Matthew shows him all the work he has done today, so proud. The two of them joke around about poisonous plants. After a while Peter comes in and comments that our lawn looks like a putting green. He tells me I look tired and gives me a hug, and we sit down to a scrounged up dinner; dried up chicken breast, toast, and carrot sticks, washed down with good wine, and eat with the rumble of the lawn mower in the background. I go over the events of the day, and by the time I get to Priscilla Presley, we are in hysterics. Matthew appears before us and tells us to stop laughing.

Matthew has warmed up spaghetti, spinach salad, and sparkling apple cider out of a wine glass for dinner, bathes, and settles down for the night. I sit on the couch and watch American Idol in a daze while Peter and Matthew listen the Beatles, their evening ritual, before Matthew goes to sleep. The phone rings, and it’s for Matthew. It’s Ben and he’s back from Spring Break. Does Matt want to hang out tomorrow? Maybe go to the mall or something? I sigh, my heart full of gratitude, and Ben tells me “Don’t even try to pay me.”

Peter and I catch the end of American Idol, and I tell him I’m sorry I’m not more talkative, I’m just so tired. He understands. We go to bed and read. After 3 minutes, my book drops to the floor, and I drift off. Not such a bad day. Maybe Matt will sleep in.

Read the first three chapters of my book HERE.

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