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Nervous Laughter

When I was eight years old, Uncle Russell came to visit. He was my mother’s cousin, but everyone called him Uncle Russell. He was twenty years old and had a severe case of cerebral palsy.

Russell was pigeon-toed as I had never seen before, causing his knees to face each other. He walked in a spastic, bouncing stumble. His hands were gnarled and bent at the wrist, fingers curled, in a way that my brother and I found impossible to imitate. His long neck was thick with muscles pulsating from the strain of holding his large, constantly moving head.

Despite his challenges, Russell always had a huge, improbable smile on his face. My brother Scott and I tried in vain not to laugh at him. Even my compassionate mother sometimes had to excuse herself to giggle in the kitchen with us.

“Laura, we’d better not laugh,” she said before going back to face poor Russell again. “God may give you one like Russell someday.”

Mom wasn’t superstitious, and I knew her warning was only meant to sober us enough to get our giggles under control.

Russell wore pointy red Keds and a baggy old cardigan sweater. His dark hair was greasy, and he smelled bad. I remember thinking that it would sure help if his parents dressed him nicely and cleaned him up a little. Looking back, I realize that his parents did the best they could-the shoes were probably the only ones that fit his feet; cardigans are easier to get on a spastic child than pullovers; and bathing a young man with cerebral palsy is a grueling job for aging parents beaten down by endless caretaking.

Through the years, there were others I couldn’t help but laugh at, like the twin brothers at a Christian summer camp when I was fourteen. One was normal and the other weird. The odd boy flapped his hands when he was happy; he’d rock back and forth and sing songs. My friend Ginny and I didn’t want to laugh at him, but we found it easier simply to avoid crossing his path so we wouldn’t blow it. One time his brother caught my self-conscious giggle and glared at me, deeply hurt. I’ll never forget it.

When I was in my twenties and living in San Francisco, I was introduced to a nice-looking guy at a Christmas party. As he stood up to shake my hand, I noticed there was something funny about his legs. He seemed like a great catch-educated, funny, well-dressed except for the bow tie. We sat down again and talked for a while. Eventually, he got my phone number. My excitement turned to dread when he got up to get us a drink. He walked like Uncle Russell. I stifled a nervous, embarrassed laugh and pretended to be laughing at a funny joke I had just heard when he got back with our drinks. Somehow I held it together for the rest of the evening.

He did call me for a date and I accepted. Before he arrived, I told myself that here was a terrific guy with a great attitude who had accomplished much despite his disability, and I should rise above my silliness, be a good person, have a great time. But when I opened the door to greet him and saw him bouncing up the stairs toward my apartment, bouquet of flowers shaking violently, I knew this would be our last date.

I called my mother the next day to share my date story. She didn’t laugh.

“I hope you were kind to him,” she said quietly. “It must be so hard for him. I’ll bet his mother worries.”

There was an awkward silence between us, and I felt like a superficial, spoiled brat. What could I say to redeem myself?

“If I had a baby with a problem, it would be hard, but I’d do fine. But I have a feeling my kids are going to be healthy,” I said.

“So do I,” said Mom. “So do I.”

A Trip to the Hardware Store

“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.

Beginnings

 

I didn’t need to check my dog-eared copy of What to Expect When You’re Expecting to know that I was in labor. I had spent the day window-shopping in San Mateo, an upscale community twenty miles south of San Francisco where I lived with my husband Peter. I was proud of my Princess Diana-inspired maternity wardrobe, and on this day I was wearing the red-floral Laura Ashley dress with the ruffled shawl collar that tied in front, sailor-style.

It was 5 p.m., and I was in the bookstore two blocks from home when the first contraction gripped me. Right away, I could tell that my evenings in Lamaze class at our local hospital had been nothing but a social hour.

“Any day now!” sang the manager, patting my belly as I hurried from the store.

I made it home in a minute or two, smiling all the way, and called Peter. We were both so excited to become parents.

“They say with the first it takes awhile,” Peter said, but he could tell from the sound of my voice that I would be an exception. By the time he walked in the door at 6:30, the contractions were three minutes apart. We made it to the hospital at 7:15, and Matthew was born just after midnight, at 12:35. It was May 22, 1986, the happiest day of my life.

I can’t remember a time when I didn’t know that I wanted to be a mother. I grew up in a loving family with parents who treasured each other. In the beginning, I was the middle child, brother Scott two and a half years older, brother David a year younger. Every evening at five o’clock, the three of us sat on the brick steps of our brown-shingle home in Piedmont, across the bay from San Francisco, waiting for the 42 bus that brought our dad home from his work as a stockbroker in Oakland.

Dad greeted us with a laugh and a hug. Sometimes he’d surprise us with treasures from Chinatown, a few blocks from his office at Dean Witter, where he strolled at lunch: wooden snakes, mystery boxes, fortune cookies. My brothers and I waited in the living room while Mom and Dad had a drink in the kitchen, discussing the events of their day, and we were soothed by the sounds of them laughing and talking. After they had caught up, we were invited in for dinner at the kitchen table. My favorite time of the day followed the evening meal, when I snuggled on the sofa with my mother and we talked or read. Even when I was very small, my mother and I shared private jokes that cemented our bond, and I loved the feeling of our bodies shaking with laughter as we cuddled.

When I was five, my brother David drowned. He was just four years old. I remember standing helplessly on the dock of Clear Lake with my mother and brother Scott while my dad struggled to revive him.

The year that followed his death was quiet and strange. My mother was remote; my father’s smile disappeared. Scott and I didn’t understand the permanence of David’s absence, and we escaped to a world of our own, fantasizing about how David would reappear. One evening, six months after his death, my brother and I found our father crying in our living room, looking at a photograph of beautiful blond David with his clear blue eyes sparkling mischievously.

“Don’t worry, Dad,” I said, patting his arm. “He’ll be back.”

“No, Laura. He won’t.”

And we all wept together. It was the saddest day of my short life, but the day when the healing began for my parents.

Four years later, my father carried my baby sister up the brick steps of our home and put her in an infant seat on the kitchen table, where we all gazed at her sleeping. Carrie was three days old when we adopted her-and once again, we were a family of five. She did not replace David, but she completed our family.

For a nine-year-old girl, there is no more precious gift than a baby, and I relished her completely. After school and on weekends, I spent every moment with her, carrying her around, dressing her, singing to her. When family and friends came to visit the new baby, they had to pry her out of my arms, and they were quick to hand her back while I stood anxiously nearby. “You will be a great mother someday!” Mom told me.

I think I scared away a couple of good prospects when I was in my twenties, with the “Wants to Be a Mother!” stamp on my forehead. Mom told me gently to tone it down a bit, but she admitted that any guy who was afraid of me wasn’t the right one anyway.

I spotted Peter at the health club in San Francisco where we were both members. He was dating a friend of mine from college. Peter doesn’t remember being introduced to me by his then-girlfriend, but I remember our conversation when he walked away.

“He is so cute! Where did you meet him?” I asked my friend.

Cute was not the proper way to describe Peter. He was handsome, resembling a young Cary Grant with brown hair sweeping across his forehead, a patch of gray in the front. What made him cute was that he didn’t know how handsome he was. When I met him he was dressed in jeans and a red crewneck sweater.

“Isn’t he so East Coast?” my friend gushed. She was hooked. I wondered if he was as well.

When I heard that they had broken up, I found a way to strike up a conversation with him. I noticed an advertisement that he had posted at the gym. His roommate was getting married and he was looking for a new one. I called him and claimed to have a cousin who was moving to the area who might be interested. Our phone conversation turned flirtatious and concluded with a lunch date set for the following day.

Six months into our whirlwind romance, Peter admitted to me that the “Wants to Be a Mother!” sign had scared him at first but ended up being the thing he loved most about me. Peter was one of four kids and had grown up in a devoted family like mine. Nearly all of his family still lived in Connecticut, where he was raised. The old girlfriend was right-he was so East Coast.

Peter and I were married only eight months after we met, but nobody was surprised-the love and admiration we shared for one another was obvious.

When we were first married, we lived together in an apartment in the Pacific Heights neighborhood of San Francisco. During the week, we worked, met friends for drinks, and had dinner together, happily making plans for our future. The weekends were spent studying Gourmet magazine and having dinner parties with friends.

Shall we use the clay pot tonight or the wok?

Where did you put the eight-inch springform pan?

It’s next to the pasta machine in the pantry.

We had season tickets to the ballet; we entered bike and running races. Living in San Francisco was seductive and gave us a false sense of superiority. Looking back, I’m grateful for our self-indulgence. It was a gift to be naive and optimistic. Life would draw us back soon enough.

A baby after two years of marriage was our plan. Matthew beat us by three months.

He was beautiful. We were parents at last.

I was a mother.

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

 

 

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?

KQED Radio: Not So Special Needs

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