Our family was having dinner one Sunday evening when Matthew, who has autism, became distressed because his potatoes were touching his meat. My husband Peter, who was tired after pruning trees all day, told Matthew in a loud voice “Don’t be ridiculous, just eat your dinner.”

Matthew yelled no, that he was the boss of his food, and picked up his plate and threw it across the room. Peter was ready to lunge out of his chair in anger, as were Matthews two younger brothers, but instead they stayed put while I walked my sobbing son to the backyard for a talk.

Although it took tremendous self control, I talked to Matthew quietly even when he flared up irrationally, (I’m like a weed whacker! If I get too wound up I need to throw my food!) until he was calm-even remorseful. Peter, Andy and John came outside when they could see the coast was clear, and Matthew apologized to his dad, who also apologized.

Another meltdown is defused.

Once Matthew was in bed, and after I finished my cold potatoes and downed my wine, Peter and I debriefed. Meltdown defused-but could it have been avoided?

YES!

There is an acronym used by recovering addicts, H.A.L.T. , that applies to parents of special needs children. If kids (or parents) are Hungry, Angry, Lonely or Tired, be aware, and be flexible.

“I should have more flexible”, said my husband, “but it is SO HARD!”

“I know, I know,” I responded in a soothing voice.

Sometimes being a good wife and mother means being a good actress.

Need more “meltdown” strategies? Check out NO MORE MELTDOWNS by Jed Baker

 

 

 

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.”

Click here to order A REGULAR GUY.

 

 

 

 

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.

An Excerpt from A Regular Guy: Growing Up With Autism

“Mom! I have something very important to tell you,” my eighteen-year-old son told me urgently. “We need to go to the hardware store.”

I took a deep breath. Another adventure with my autistic son was about to begin.

When we got to the store, Matthew rushed in and disappeared behind the shovels and the toilet seats. I followed, warily. He reappeared with the orange extension cord he’d had in mind.

“Mom, give me the money and let me buy this-like I’m a regular man.” His forehead was screwed up with intensity.

I handed him a twenty and told him to meet me outside.

I stood behind Matthew in line, clutching a bottle of Elmer’s glue I had grabbed. He wanted me to look like a regular woman, anonymous to him, shopping at Ace Hardware. I watched as Matthew put the extension cord on the counter and handed the saleslady the twenty-dollar bill.

She was Flo, an old-timer with a bouffant hairdo and painted-on eyebrows. I saw the two of them having a little conversation, and I could tell by the confused look on Flo’s face that she might need my help. But I held back anxiously to respect Matthew’s wishes.

After what seemed like an eternity, Matthew paid for the extension cord and stepped outside to wait for me as I marched up to Flo, placing the glue on the counter.

“See that guy?” she whispered. I glanced out the door and saw Matthew standing there with a self-satisfied look on his face. “He’s got mental problems!”

“What did he say?” I asked with a heavy heart.

“He walks up here with his extension cord, and he says, “˜Are rhododendrons poisonous to goats?’ And I says, “˜I don’t know.’ Then he just starts laughing and walks out with his extension cord!”

“He’s my son,” I confessed. “I should have explained when I came in. He’s autistic.”

“Autistic? You mean like the Rain Man?” she asked, looking mortified.

“Well, sort of,” I replied. Best not to go into a big explanation right now. “He wanted me to let him buy something at the store like he was a regular guy.”

“I feel terrible!” Flo said. “But he must know he’s different.” Realizing that Matthew’s hopes, dreams, and lack of self-awareness would be too hard to explain, I shrugged and took my glue.

Flo had no idea how many times I had said to Matthew, “If you want to be treated like a regular guy, you’ve got to act like a regular guy!” or “Regular guys don’t talk about poisonous plants all the time!” Unfortunately, social awkwardness is wired into Matthew’s brain, and no amount of instruction or reasoning was going to change that.

I glanced at Matthew as we drove home, and I could tell by the strange smile on his face that he had moved on from his “regular man” frame of mind to the absurd.

“What would happen if Dad ate an oleander?” he asked, grinning crazily, and the lump that had been in my throat on and off since his birth returned.

The thing about being the parent of a child with autism is that you are often so overwhelmed by the relentlessness of your job that you can’t think straight. A lot of well meaning and unsolicited advice comes your way during these moments of confusion, so much so that it’s easy to filter out the good stuff. Once in a while, though, you hear something that resonates with you and fortifies you. For example:

 

I was on my way to pick up Matthew at preschool when a mother, holding the hand of her crying daughter approached me.

“See these bite marks? Your son bit her. It was completely unprovoked. We’re on our way to the pediatrician, thank you very much.”

I was mortified.”I am so sorry,” I said, “Sorry doesn’t cut it,” replied the angry mother as she rushed away.

Luckily, my dad called later that day to say hello. I told him about the incident. “I feel sick about it,” I said, “not only that Matthew hurt this girl, but that the mother will spread the word that Matthew is a trouble kid. What should I do?”

“Write her a note, reassure her that you’re working on Matthew’s behavior, “he said. “Drop it off with some flowers or a bottle of wine and things will settle down.

1) But don’t take this too personally. Maybe there was more to the story–maybe the woman’s cat scratched her that day–maybe her husband is having job troubles. You never know what’s going on behind the scenes.”

His words of wisdom did three very important things:

1) They made me smile

2) They filled me with hope and resolve–and clarity

3) They helped me manage a lot of uncomfortable situations through the years in a community minded way.

Thank you, Dad.

I asked parents to share the words that helped them:

What piece of advice resonated with you and made a difference in your life?

 

2)My husband said to me once (after a devastating, huge failure of an outing where my son stimmed to blues clues for 2 full hours)”Babe, sometimes, ya just gotta skadoo.” This became our family motto. In other words, if it’s not important in the long term, just go for the ride.

 

 

Liz Turner Zurn

 

3)Learn to accept offers of help.

 

 

Madeline Mckewan Asker

 

4)You are your child’s best advocate.

 

 

Jacki Gilbert Hensley

 

5)Happiness is a choice. Pain is inevitable but suffering is optional.

 

 

Jamie Menning Regier

 

6)Put your emotions on the back burner, your kid needs you NOW.

 

 

Alicia Coleman

 

7)Always build on your child’s strengths and don’t compare your child to any other child.

 

 

Katherine Osbourne

 

8)The world will not collapse if you are five minutes late. Relax.

 

 

Kimberly Falk

 

9)You know your child better than anyone, never forget that.

 

 

Valerie Mehany

 

10)Never assume anything.

 

 

Nicky Lynchehun

 

11) Someone once told me”It’s just the word ‘autism’ that you’re afraid of.” I went from “how do I deal with this?” to “let’s deal with this!”

 

 

Amy Jo Patton

 

12)CELEBRATE THE SMALL STUFF. It’s amazing how, “Mom – you might need a jacket – it’s cold outside” is such a monumental leap forward of awareness and concern for others wrapped into one simple sentence.

 

 

Kirstie Martinelli

 

13)You can’t take care of him if you don’t take care of yourself.

 

 

Shannon Marie Haworth

 

14)My sons pediatrician said “Arm yourself with information. You’re going to meet a lot of doctors, teachers and therapists along the way and they won’t know your boy as well as you do.”

 

 

Katie Smith Bachman

 

15)Always assume competency.I am different not less. And I am more like you than not.

 

 

Jenn Brooking

 

16)Treat your child like they are normal and talk to them like a normal person not like a baby.

 

 

Annie Colson

To be continued!

***

Read A REGULAR GUY: GROWING UP WITH AUTISM

also available on KINDLE

 

 

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.

 

 

 

 

Follow this link for original article

Follow THIS LINK to read my guest post for Lisa Belkin’s Motherlode blog in the New York Times

An excerpt from A REGULAR GUY: GROWING UP WITH AUTISM.

(you can read the first 3 chapters HERE.)

I sat on the sofa that looks out our living room window, my attention torn between the People magazine in my lap, and Matthew, who was sitting cross legged on the front lawn, inspecting — or was he dismembering? — a dead butterfly. A heap of laundry on and around the coffee table nagged at me – I was just too tired, too scattered. Peter wandered in from the kitchen, beer in hand.

“Where’s Matthew?”

“Right there,” I said frostily, motioning to Matthew.

Saturdays were hard, and seemed to go on forever. Someone always had to keep track of Matthew – and one of us always thought he or she was doing more than the other.

In truth, keeping track of Matthew was an impossible task, and we were both doing our best. In earlier days, we had alternated taking Matthew for hikes or to the movies.  We took him to Tilden Park for train and merry-go-round rides over and over again. We went through a stage when Peter took him to a small local airport to watch the planes take off for hours. But at age fourteen, he preferred the company of kids his age, and was good at finding the ones who liked to challenge him to spitting contests and walks to pot smoking hideouts in the local cemetery. We were constantly searching for him, trying to redirect him”¦ and running out of steam.

Suddenly, the view out of our living room window changed, and I felt my feet planting firmly into the red oriental carpet, ready to act. An elderly Asian woman and her husband walked by our house slowly, and said something to Matthew. The woman was shaking her head and pointing at the butterfly that Matthew was”¦ playing with.

“Uh oh”¦” Peter and I mumbled in unison. Before we could move, Matthew picked up a rock and hurled it at the woman, hitting her in her shoulder.

Peter flew out the front door, grabbed Matthew and dragged him inside while I apologized profusely to the couple. It was clear they didn’t speak English, so I clarified Matthew’s situation by pointing at him, then pointing my index finger at my temple, twirling it around and saying “Crazy”. They nodded sympathetically and went on their way.

By the time I got into the house, things were heating up.

“She didn’t look nice!”Â  Matthew yelled at Peter, who gripped Matthew’s upper arm firmly.

Uh, oh. Peter’s going to lose it.

“You don’t throw rocks at people who look at you funny when you are doing something FREAKY!” Peter roared.

Matthew went nuts, and started punching and scratching him. It seemed that Matthew became stronger with every meltdown.

“Don’t hit back!” I yelled at Peter, who succeeded in pinning Matthew to the hardwood floor.

I could tell Peter was tempted, and I didn’t blame him. This wasn’t the first time Matthew had attacked”¦Peter and I have jagged scars on our hands and arms from similar incidents.

Matthew got loose and kicked a hole in the wall before I could pick up the phone and call 911.

Within a minute, the doorbell rang. I opened the door, and there stood Officer Jones in his navy blue uniform, complete with badge, gun in holster, and club.

I had never seen a situation diffuse so magically.

The first person to speak was Matthew.

“Oops,” he said, as if all that had taken place had been accidental. A piece of sheetrock lay at his feet, its powder covering his right calf.

Officer Jones was medium height and build, with a black crew cut and a passive expression on his face, like a young Joe Friday.  He spoke calmly and quietly.

“Please tell me what happened,” he said. There wasn’t a hint of anger or threat in his voice.

“The lady didn’t look nice” Matthew explained, “and I sort of threw a rock at her.”

“And I told him you don’t attack people who look at you funny!” Peter injected, heating up once again.

Officer Jones’s expression remained spookily unchanged.

“Mrs. Shumaker called 911 because of a domestic altercation. Who started it?” he asked smoothly.

“Autistic“ I whispered to the officer from over his right shoulder-he looked at me as if I were a nut, but paused and processed my clue while Matthew proceeded.

“I sort of hit my dad first, but then he hit me next.”

God help us.

“Matthew, I didn’t hit you” Peter said, glancing sideways at the policeman. “I held you down so you would stop hitting me and kicking holes in the wall!” I looked at Peter and cringed. Normally a buttoned up kind of guy, today he happened to be wearing a white threadbare undershirt with two small holes an inch above his left nipple. I scanned the room for his beer bottle and casually kicked some unfolded laundry behind the couch. A bra got tangled around my ankle, and I stumbled to regain my balance.

The officer seemed unmoved, and his ponderous silence made us nervous. After a moment, he spoke.

“Matthew, your father is right. You must never throw rocks at people. If someone upsets you, find a parent and let one of them handle things. You must never hit your parents. Do you understand?”

“Am I going to jail?” Matthew whimpered, obviously humiliated to have disappointed this powerful figure.

“No.”

“Can I talk to you for a minute?” Matthew asked the officer, his voice quavering, his expression pained. I could tell he was hurt by the gulf that had formed between us.  ” I don’t want my parents to hear.”

Peter and I listened from the next room while Matthew and the officer chatted on the couch. I could see only the upper right quadrant of the officer’s face. Matthew told him how hard it was when people made fun of him. He told him how lonely he feels when his brothers go out with friends, and he has no one to hang out with.

“I have friends,” he said, “but they’re really busy.”

Matthew told Officer Jones that girls look nice, and that he would like to be able to touch their hair, even though it’s against the rules, and that his Grandma was really sick and might die. The officer listened, the expression on his face softening ever so slightly. Just as Matthew was about to show him his room and his middle school yearbook, the officer’s radio crackled–something about a shoplifting incident at the convenience store on the main drag.

“It was nice talking to you, Matthew. Will you remember what we talked about?”

“I surely will,” Matthew said resolutely. “Do you think you can come over again if I need to talk?”

My poor, lonely boy”¦he had made a connection, a friend. I never thought there would be a day when I would want a police call to last a little longer.

“Matthew, I am happy to talk with you, but I never want to come to this house again if you have thrown a rock, or hit your parents, or put a hole in the wall. Do you understand?”

“Do you ever shoot bad guys?” Matthew asked, trying to keep things going a little longer.

“Only if I have to. I really have to take this “¦” as his radio barked with urgency.

“But you’ll remember what we talked about?” he asked, placing his hand gently on Matthew’s shoulder. Matthew nodded his assent, tears welling up in his eyes. Officer Jones could have turned to me and asked me for a new police dog. I surely would have given it to him.

Matthew walked his new friend to his car”¦I thought I heard him ask the officer if he’d ever had a seizure – and off he went. I stood with Matthew, patting his back lightly as he watched the police cruiser drive away.

“Does Officer Jones think I’m a good guy or a bad guy?” Matthew sputtered.

“He thinks you are a wonderful guy.” I said.

“I’m not going to jail?” Matthew heaved.

“No, honey. You’re not.” And Matthew fell against me and cried, tears of relief, regret, and confusion.

Matthew didn’t notice the curious neighbors peering out their windows.

I’ll give them a call later

But what could I tell them to preserve Matthew’s dignity?

“I hope he gets those bad guys.” Matthew said, trying to pull himself together.

“I’m sure he will. Let’s get you a cold washcloth and a drink of water.”

“I’m a good guy”¦” Matthew muttered, as we walked back into the house. I drenched a washcloth in ice-cold water and held it to his face as long as he would let me, and he went in his room and shut the door.

Peter and I sat at the dining room table, wiped out. We felt exposed, sad for Matthew, guilty for letting things get out of control. We marveled at how quickly Matthew responded to the police officer, and resolved to use his approach the next time.

But could we do it? Could we be firm and remain calm when Matthew throws a rock at someone, or kicked a hole in the wall, or reappeared after we had been searching for him for two hours?  I could be a good actress, I thought. There was no way I could do it otherwise.

“What time is it?” I asked.

“4:59″ said Peter, and got up to pour me a glass of wine–it would be 5:00 by the time it reached my lips. Then he went in to see Matthew. I heard them talking quietly, then laughing–and off they went to get an ice cream cone.

I tried to remember the last time my parents had “lost it” with me. It had been a long, long time ago, and I didn’t remember the details. But I did remember feeling alone and scared. I craved for swift resolution to the bad feelings. I longed for the hug, for the tears of joy and relief, and for the laughter that followed.  I remember going to bed feeling safe. Everything was going to be all right, and I was the luckiest girl in the world. And when Matthew bounded through the door, peppermint ice cream all over his face, I went to hug him, but he had moved on.

“Mom, I’m too busy for this!” and he ran to the back yard, and out the back gate, searching for the source of a sound that only he could hear. Peter gave me a quick kiss, and ran after Matthew, threadbare t-shirt and all.

Suddenly alone, I felt gripped with anxiety. I was haunted by the events of the afternoon- the look of disgust on the Asian woman’s face,  the police car in the driveway, the curious neighbors. I saw Matthew’s tormented face, red from crying, and slick with a mixture of tears and slobber. I worried about Andy and John and knew they would hear from the kids at school”¦There was a police car at your house –again?

I knew that everything would not be all right.

nd then the doorbell rang. It was my neighbor, Dori. She held a loaf of banana bread and before I could thank her, she gave me a hug.

Then I lost it.

An Excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

Whenever Matthew was home from Camphill, there was business to take care of. During Christmas break, we scheduled his annual physical. At Thanksgiving, he got a haircut and visited the dermatologist. During spring break, it was time for a visit to the dentist.
But this last spring break, as Matthew was turning nineteen, we had some very important business to take care of. A court investigator was coming to visit our home. Peter and I were in the process of obtaining limited conservatorship for Matthew, as advised by the Regional Center caseworker who had been involved with our family since Matthew’s autism diagnosis years ago.
Limited conservatorship would enable us to continue to care for Matthew as we had since birth, making decisions about where he would live and about his education. We would continue to be in charge of his financial affairs and medical treatment. We could give or withhold consent should he decide to marry.
We had endured many painful steps since Matthew’s birth””diagnosis, search for treatment, and yearly evaluations by the school and state, to name a few. But this step was particularly difficult. It was an admission that after all of our years trying to build skills and autonomy, our adult son would not achieve the independence of which we, and he, had dreamed.
The attorney assigned by the court to represent Matthew had come to call the day before. Both the court investigator and the attorney were required to make home visits to verify that Matthew was indeed disabled enough to warrant this drastic action, and to advise him of his rights. The attorney, who later would admit that Matthew’s was only her second such case, was a young blond without a line on her face. With her businesslike, slightly suspicious manner, I felt like a scam artist looking to bilk my son out of his rights and freedom.
We chatted briefly at the dining room table, my attempts to break the ice (“I love your briefcase!”) falling flat. Then she asked if she could meet Matthew alone. I coaxed him from his room, where he was studying a book on poisonous plants, and I eavesdropped on their conversation from the kitchen.
“Do you know that I’m an attorney?”
“What’s that?”

“Do you have a driver’s license?”

Ooooh, sore subject. Wants one. Can’t have one.

“Do you have a girlfriend?” Silence.

You’re on a roll. Why don’t you ask him if he has any friends””at all?

“Do you know how much a car costs?”

“A lot of dollars.”

“Do you know how much a hamburger at McDonald’s costs?”

“No.”

He doesn’t go to McDonald’s.

After asking him a few more questions, she told me with a wink that we clearly had a good case. She didn’t know that I was on the verge of crying, and that I was desperate for some kind of reassurance that I was doing the right thing.

I knew that the young attorney meant no harm, but she had frayed some nerves and uncovered some insecurities. I worried that another grilling might damage Matthew’s ego, and mine.

A few days later, while waiting for the court investigator to arrive, I paced anxiously, wringing my hands. I envisioned a stout jail-warden type with frizzy dark hair pulled back in a tight bun, and I worried that she would bark at me and I would dissolve into tears. So when I opened the door to Claire, the court investigator, I was utterly relieved.

Claire had a shy, sympathetic smile, an open face, and brown Labrador-retriever eyes. Her brown hair was spiked in a youthful boy’s haircut and she wore a bright orange Oxford shirt and khakis. The only thing that distinguished her from a younger sister happy to see me was the badge that she wore around her neck.

I showed her to the dining room table where the attorney had needled Matthew a few days earlier, and she immediately reassured me that her visit was routine and that our case was straightforward. She explained the process and encouraged me to ask questions. Claire treated me like a heroic parent going to great lengths to secure the uncertain future of my challenged son. At that moment, Matthew emerged from his room with a long piece of toilet paper streaming from his left nostril. Why hadn’t he treated the attorney to such a greeting? He might have been spared the driver’s license and girlfriend questions. Claire asked Matthew if she could see his room, and as before, I listened from the kitchen while she explained her visit.
Matthew took it all in somberly, and then told her he could take care of himself. “I’m good at hard things,” he said proudly.

“I can see that! Wow!”

I peeked in and saw him proudly holding up the checkerboard that he made in woodshop.

“Let me look at this!” Claire turned it over in amazement and felt its well-sanded corners. Matthew studied her face while she admired his work; his smile and chuckle were infectious and heartbreaking. I could tell Claire felt it, as her voice cracked while she explained that being taken care of by your parents is a good thing.

“Your mom seems really nice. I’ll bet your mom and dad are so proud of you.” Then she asked him if he had any questions.
“What states have you been to?” he asked his new friend. Claire patiently recounted all the states she could remember, and listened in amazement to Matthew’s list.

Sobbing like an idiot from my spying post in the hallway, I quickly dried the tears with my sleeve when Matthew emerged from his room with Claire and walked her to her car.

“Back off!” he told me as I followed them out. Claire smiled and nodded””we were done. Another dreaded visit. Another bittersweet ending.

Claire’s name is on the top of my Christmas card list. I wonder when her birthday is?