San Francisco Chronicle
January 15, 2006
Link to original article

Do you want me to come in with you while you get your haircut?” “No,” replies my 19-year-old son Matthew. “I want him to think I drove here by myself.”

When I suggest that he remove the junior sheriff sticker from his T-shirt before he goes in, he refuses.

“I want him to think I take care of bad guys.”

Matthew is autistic, and wants to be a regular guy in the worst way. But he is crippled by a social awkwardness that, try as we have, we can’t train out of him. Earlier in the day, we had been to the dentist, where Matthew read “The Care Bears Go to the Dentist” while waiting. To look at his face, you would think he was reading “Paradise Lost.” I sat next to him with a straight face while the packed waiting room stifled laughter. And who could blame them?

Most of the people in the waiting room have seen Matthew around town and wondered about him. They have seen him at the skateboard store, pretending he works there, and at the hardware store with his large hands wrapped around a bottle of weed killer, studying the label earnestly. They have seen him pushing a gas-powered lawnmower around town with a weed whacker and a leaf blower stacked on top.

What is with that kid?

Matthew doesn’t want just to be a regular guy. He wants to be the guy, the poisonous plant and weed expert, and the lawn-care authority of our East Bay community of Lafayette. He’s been known to approach strangers with warnings about deadly nightshade, oleander and water hemlock. Some snicker and walk away, others show a glimpse of understanding and stop to chat. They make his day, and I know my smile of gratitude makes theirs.

“He would be really good looking if he weren’t autistic,” my 12-year-old son says of Matthew, and as unkind as it sounds, I know what he means. Matthew is handsome, with a tall and wiry frame, broad shoulders and sandy blond hair. His eyebrows arch dramatically to frame his brown eyes, and his jaw is square. But his exaggerated expressions and body carriage set him apart. His forehead twists with intensity, he smiles too suddenly and too widely, his hungry-for-friendship gaze is desperate. He doesn’t pick up on subtle social cues, like when to step back, when to change the subject from poisonous plants to anything more universal, and he doesn’t understand that it is not cool to ask a girl if she has ever had a seizure. He likes to wear dark socks and sandals, shorts and a T-shirt that says Shumaker Landscaping, with our phone number below. The phone number, of course, is not for soliciting business as Matthew would like to believe, but for identification purposes.

“Is this Shumaker Landscaping? There is a man mowing my lawn, and I already have a gardener. Could you please get him to stop?”

Matthew has been attending Camphill Special School in Pennsylvania since he was 16, a year when he decided that he should drive a car like a regular guy and drove my car through a wall in our garage. There were other close calls. One day during his freshman year at our local high school, he observed a guy pushing his girlfriend flirtatiously and then tapping her on the head. When Matthew tried the same move with too much force, I was summoned to his school where he was crying in the principal’s office. “Joe did it to Sue, and she liked it!” Just when we thought things were calming down following this incident, we got a letter from an attorney asking us to contact him about the bicycle accident involving Matthew. It turned out that while riding his bike, Matthew had apparently collided with a young boy on his bike the month before.

“Matthew? What’s this about a bike accident?”

“Who told you?”

“Someone sent me a letter. Was the boy you bumped into hurt?”

“Pretty much.”

Dear God.

“Was he bleeding?”

“Probably. Am I in trouble?”

My husband and I came to the heartbreaking conclusion that Matthew was no longer safe in the community where he had grown up, and his impulsive actions were putting others in peril. He needed more supervision, more than we or the local school could provide.

The good news now is that Matthew is thriving at Camphill, and is an important part of its community of disabled people. He goes to class, cooks and does his own laundry. He prunes trees, tends an organic garden and takes care of the grass. During the winter he shovels snow gleefully, and has become fascinated with weather patterns in the Northeast. He brags about his newfound responsibilities, and tells us he is good at hard things. When he graduates from this school, he hopes to live in the Camphill community in Santa Cruz.

But he’ll be home for spring break, and if you’re lucky, you might spot him walking around town with his garden tools, rain or shine, just a regular working guy. His mother is the blonde hiding behind the wheel of her Toyota Highlander, or behind a bush, keeping her eye on her firstborn son. Just a regular mom with a giant lump in her throat.

Laura Shumaker lives in Lafayette with her husband, Peter, and her three teenage boys. She has recently completed a memoir about life with an autistic son.

“A must-read for all families affected by autism, professionals who care for children and adults on the autism spectrum, and for those who wish to get a better understanding of what it is like to wear the shoes of a mother striving to do the best for her special-needs son.”

-Ricki G. Robinson, M.D., M.P.H.
Clinical Professor of Pediatrics at the University of Southern California School of Medicine; Scientific Advisory Board Member, “Autism Speaks.”

“In Laura Shumaker’s thoughtful portrait of her family’s struggle with autism, we explore the journey that anyone touched by disability must navigate. Her writing is elegant. Her lessons are invaluable.”

-Mark Trautwein
NPR Perspectives, KQED-FM/San Francisco

“Laura Shumaker has written a book with sensitivity, warmth, and intelligence. On one level its theme is autism; on another it is about tragedy, hope, resilience, and, above all, loving.”

-John Swartzberg, M.D.
Clinical Professor of Medicine; Chair, Editorial Board, UC Berkeley Wellness Letter;
Director, UCB-UCSF Joint Medical Program

“What would happen to Matthew if you guys were killed in a plane crash?” asked a nervy acquaintance. The question stunned me. Since my son, Matthew was first diagnosed with autism as a toddler, I’d been asked tough questions about his future. “Will he ever live on his own and hold down a job? Do you think he’ll get married?”

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“Voices of Autism” Anthology Shares Real-Life Accounts of 40 Patients and Caregivers

– LAURA SHUMAKER, LOCAL AUTHOR, PUBLISHES STORY IN ANTHOLOGY–

LOVE LESSONS

It was February 16^th, just two days after the Valentine’s Day storm paralyzed the Northeast. I had just finished my continental breakfast-a rubbery muffin and weak coffee -at a mediocre hotel near the Philadelphia Airport. My flight from California had arrived late the night before, following hours of delays, and I was tired and jittery.

I was on my way to pick up my twenty-year-old son, Matthew, who is autistic, at his special school in rural Pennsylvania, about an hour west of the city. He had been begging me to take him to Washington D.C. since he’d enrolled at the school four years before at age 16, and I thought it would be fun to go over the President’s Weekend break.

Sending Matthew to a residential school was the last thing that my husband and I thought we would ever do. While painfully aware of his disability, Matthew has always wanted to a regular guy like his two younger brothers Andy and John. Matthew didn’t just want to be a regular guy, but the guy- the poisonous plant and weed expert, and the lawn care authority of our northern California community. He was often seen at our local hardware store with his large hands wrapped around a bottle of weed killer, studying the label earnestly. My socially awkward son would approach strangers with warnings about deadly nightshade, oleander and water hemlock. Some would snicker and walk away; others showed a glimpse of understanding, really putting a smile on the day.

But just a few days into his 16^th year, Matthew decided that he should drive a car like a regular guy and drove my car through a wall in our garage. There were other close calls. One day during his freshman year at our local high school, he observed a guy pushing his girlfriend flirtatiously and then tapping her on the head. When Matthew tried the same move with too much force, I was summoned to his school where he was crying in the principal’s office. “Joe did it to Sue, and she liked it!”

Just when we thought things were calming down following the incident at school, a letter arrived from an attorney asking us to contact him about the bicycle accident involving Matthew. It turned out that while riding his bike, Matthew had collided with a young boy on his bike the month before.

“Matthew? What’s this about a bike accident?”

“Who told you?”

“Someone sent me a letter. Was the boy you bumped into hurt?”

“Pretty much”

Dear God.

“Was he bleeding?”

“Probably. Am I in trouble?”

It became clear that Matthew was no longer safe in the community where he had grown up, and his impulsive actions were putting others in peril. He needed more supervision, more than we or the local school could provide.

**

When I pulled into the snowy driveway of the house where Matthew lives, I saw him waiting on the porch, smiling widely, and that old familiar lump made its way back to my throat. He was wearing jeans, black snow boots and a thin t-shirt, even though it was only 28 degrees. He was holding the leaf blower that I’d given him for Christmas, and was using it as a snow blower. It was clear that he had just cut his bangs again, another botch job. Matthew’s house was on the grounds of his school, and he lived there with two other students and his house parents, Dawn and Lazlo.

“He’d be really good looking if he weren’t autistic,” my fourteen-year-old son has said about Matthew, and as unkind as it sounds, it’s true. Matthew is very handsome, with a tall and solid frame, broad shoulders, and sandy blonde hair. His eyebrows arch dramatically to frame his brown eyes, and his jaw is square and masculine. But his exaggerated expressions and awkward body carriage make him stand out in a crowd. His forehead twists with intensity, he smiles too suddenly and his hungry-for-friendship gaze is desperate. And the bangs are a problem.

“He’s been so excited about this,” said Dawn as she loaded Matthew’s bag in the car. She looked excited, too, and I understood. Matthew had been unusually aggressive about making contact with “hot” girls when his school group went on outings, using suave pickup lines such as “Can I touch your hair?” and “When was the last time you had a seizure?” When counselors from the school tried to offer suggestions of more appropriate exchanges, Matthew yelled, “Stay out of my business!” The pretty girls scattered, rolling their eyes, and leaving Matthew angry, heartbroken and inconsolable. I applauded anyone who tried to crack Matthew’s socially awkward behavior, but was losing hope that Matthew would ever be able to enjoy the relationship that he craved, one that every mother wants for her child.

The drive from Pennsylvania to Washington was stressful as I swerved to avoid shards of ice, remnants of the storm flying off of cars, trucks and tree limbs. Matthew seemed oblivious to my angst, and played Beatles music loudly as we drove, replaying the first thirty seconds of Octopus’s Garden over and over each time we entered a new state. By the time we got to Washington DC I was ragged and hungry, and while seeing the Washington Monument, the White House, the Jefferson Memorial for the first time thrilled me, I worried that it was all too much for Matthew, who was smiling but flapping his hands and rocking double time. Near our hotel, we found a pizza place – Matthew’s first meal while traveling must be pizza – and Matthew settled down after eating his cheese pizza “with nineteen French fries on the side” before heading back to our hotel for the night.

During breakfast at our hotel the next morning, I bit my lip as Matthew leered awkwardly at our attractive young waitress while ordering three Belgian Waffles and an order of sausage.

“First time in D.C.?” she asked, “you have got to go to the Botanical Gardens! Look,” she said, pointing at our map, “it’s just about six blocks away, right next to the Capitol.”

“I’m smart about gardens, I tell you,” Matthew said earnestly, trying to impress, “and you should stay away from oleanders. They’re poisonous.” The waitress rushed away, stifling laughter, leaving me with the heavy feeling in my chest that mothers get when people laugh at their children.

**

I panicked when I first saw the enormous glass conservatory that housed the botanical gardens and the swarm of people streaming in. Clearly, this was a popular week for middle school tour groups in Washington. A small pack young teenage girls were bunched in front of us giggling uncontrollably.

“Those girls are hot!” Matthew said, loudly enough for some chaperones to look at us warily

“They are too young to be hot,” I shot back nervously as Matthew pushed towards the entrance. “Stay away from them or you’ll get in trouble.”

“Let me go in first,” Matthew said, still eyeing the young teens. “I don’t want people to think I came here with my mother.”

“That’s fine,” I said, “but Matthew. This is Washington D.C.” I pointed at the pair of armed security guards at the entrance. “It’s important that we stay together and use out best manners. Do you understand?”

“If I don’t use my manners, will they think I’m a bad guy?” Matthew asked, raising his brows and looking titillated.

“They might. You’re a big guy, you know how to behave.”

I tried to suppress the sinking feeling that I’d already lost control of the day, that in fact this entire trip had been a bad idea as he followed the group of young middle-schoolers past the security guards, darting through a series of automatic sliding doors that separated the collections of plants. While I was able to track him, he was working so hard to distance himself from me that he looked suspicious, and I looked like an undercover agent tracking him. I caught Matthew by the arm just as a security guard started marching toward us.

“What did I just say a minute ago?” I whispered hoarsely.

“Is everything all right here?” asked the security guard.

“My mother keeps following me,” wailed Matthew, “I need some space. I want to be independent!”

“Of course you do,” said the guard, glancing at the hacked bangs that explained all, ” but you need to stay together while you’re in this building.” Matthew took off again once the guard turned his back, and I followed like a championship speed walker until he raced through the exit and turned to me, stomping his foot.

“Stop stalking me!” he yelled. I felt like the young mother whose child was having a melt-down at the grocery store-if only I could just pick Matthew up and disappear into my minivan. Instead, I had to remain calm. The last thing we needed was a public shouting match.

“I have a great idea,” I said, “Let’s drive to Virginia! That’s a state that you’ve never been to before.”

“Or we could go there first,” Matthew said, pointing to the Capitol Building. There was a line curving around the imposing marble steps, also protected by armed security guards. My instincts told me that it would be best to stay away from any more monuments except from the distance of our rental car.

“Can you promise to stay with me and walk slowly?” I sighed, “Will you remember that this is the most important place in the world to follow the rules?“

**

Fortunately, the line that led to the entrance of the Capitol was moving quickly. It wasn’t until we got to the security checkpoint that I learned we were in the line for the gallery that overlooked the Senate floor. This didn’t concern me at first. Surely since 9/11 the gallery would be in a secure, soundproofed room with floor to ceiling bulletproof windows separating us from the Senate floor. But after filing through a third and final metal detector, Matthew and I were led into the second of three rows that overlooked the Senate floor, where John Warner was speaking. No walls, no glass…just open air and the Senate floor right before us. A camera crew was taping the proceedings for CSPAN.

God help me…

To make matters worse, seated in the row behind us were five very good-looking college age girls.

The hot flashes I’d experienced before were nothing compared to the whoosh of heat that rushed through me now. Matthew promptly got down to business, leaning back and flirting loudly and awkwardly with the co-ed behind him. She shook her head and motioned for him to turn around, which he did with a sly smirk.

“Talking is not allowed here,” I whispered firmly. “I’m serious.”

“O.K!” he yelled. I made eye contact with the security guard hoping he would remove us, but he didn’t budge and Matthew twisted around again, tapping the knee of another girl behind him and waving at her.

“Cut it out!” she whispered, then looked at her friends in disbelief. While I was frantically thinking of a way to coax Matthew out peacefully, the girls got up and left in disgust. Matthew rose to leave with them, but the security guards motioned for him to stay seated. Matthew looked surprised, hesitated, then sat down and faced forward. His face turned red, and tears poured down his face. Diane Feinstein made her way to the podium. I looked pleadingly at the security guard, and he came to my aid.

“Let’s go, son,” he said kindly, his arm outstretched, and my sobbing son and I filed out of the gallery. Once outside in the hallway, Matthew confided to the security guard that he wanted a hot girlfriend because he was healthy.

I put my arm around Matthew’s shoulder as we left the Capitol, and wondered what I could say about this experience that would make sense to him.

“Those girls really hurt my feelings,” Matthew said as we exited into the cold. “They weren’t nice.”

“I know Matthew, but you know what? One time when I was your age, something like this happened to me, too.”

“Really? Where were you?”

“Well, I was in church, and some really cool guys were sitting behind me. I decided to talk to them.”

“Then what happened?”

“I started to talk to them and they told me to shut up!”

“Then what did you do?”

” I started crying. Then my mother, your grandma, walked me out of the church.”

“Was she angry with you?”

“No, she knew that I felt bad because the boys yelled at me. She explained to me that at church, you are not supposed to talk. And the boys knew that and didn’t want to get in trouble.”

“Oh.” Matthew was quiet for about a minute, and wiped his runny nose on the sleeve of his pale blue sweater.

“But Mom?” he asked, his voice quavering, “Did the boys actually think you were nice?”

“I don’t know,” I said. “I never saw them again. But later there were other boys who thought I was nice.”

“That’s good. I’m done talking about the girls now. Can we have lunch in Virginia?”

**

We headed toward Virginia, and as Matthew cued up Octopus’s Garden on the car’s CD player, it occurred to me that this silly ritual had a purpose-it distracted Matthew’s heavy, longing heart. As littered with roadblocks as it was, Matthew’s search for a meaningful relationship was as important as anyone’s. It was vital that everyone who cared for him keep trying to help him find one.

I looked wistfully as we drove away from the Washington Monument and Jefferson Memorial we wouldn’t visit.

I’ll see them next time.

 

LaChance Publishing is donating 100% of profits to LaChance’s other entrepreneurial venture, The Healing Project (www.thehealingproject.org), a non-profit organization dedicated to the education and support of those living with life-threatening and chronic illnesses.

Voices of Autism is available at bookstores everywhere and at www.healingproject.org.

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BEN

(an excerpt from A REGULAR GUY: GROWING UP WITH AUTISM)

The day before Matthew’s first day of high school, I pushed open the door to Joe’s Barbershop, the intense August heat on my back. Matthew trailed behind me, a big expectant smile on his face. He went straight for the lollipops on the counter, the ones you are supposed to get after the haircut.

Trips with Matthew to Joe, the barber, were a treat. They gave me a glimpse of “normal” as the two settled into a regular barbershop conversation that Joe modified to accommodate Matthew’s interests.

Instead of “How about that ballgame,” it was “Seen any poisonous plants lately?”

The barbershop was known and revered by the students at the local high school and the small private college nearby.

“Laura, you don’t look so good,” said Joe as he swept up from the last customer, and he was right. I looked like hell. I was tired and drawn, and I hadn’t smiled in quite a while.

“Joe, you wouldn’t know of any college students who are looking for, uh, babysitting jobs.”

I knew right away I should have used a different term.

“I’m not a baby! I’m a teenager and I don’t need babysitters!” yelled Matthew.

“What I mean, Matthew, is a cool guy for you to hang out with. ”

“As a matter of fact,” said Joe, “I know a really nice kid who’s looking for work. He’s a freshman at the college. He left his phone number on the bulletin board.”

“Do you know anything about him?” I asked, holding up the scrap of paper with Ben’s number on it.

“Not much. Seems nice enough,” he replied. I envisioned a nerdy, scrawny, homesick kid who didn’t have a social life and had decided he might as well babysit. I had no problem with that. I needed help.

Adolescence had kicked Matthew’s impulsive behavior into high gear. He had become an escape artist, and I was often seen cruising around town in my minivan, anxiously searching for him. On these excursions, Matthew approached kids his age and begged them for friendship. He stood too close to girls and asked them if he could touch their hair. Faced with frequent police visits and neighborhood complaints, I would deliver flowers, bottles of wine, and cookies to those who had been upset by Matthew’s shenanigans. Damage control had become my way of life.

I circulated brochures about autism to neighbors and law enforcement, who thought Matthew’s behavior might be drug-related. Through it all, I worried about John and Andy, and about how Matthew’s public scenes affected them. It was an unsettling time, and I was a wreck. Maybe this nice college boy could give me a hand.

I called Ben later that afternoon and left a message. His phone message said something like, “Yo, here comes the beep, you know what to do.”

Maybe he wasn’t such a nerd after all.

Ben called back the next morning and we arranged an interview for the next day. He sounded pretty normal on the phone. He mentioned that he played football for Saint Mary’s College. Hmm. . .

One of my friends had stopped by to borrow a cup of sugar when the doorbell rang. I opened the door, and there he was—tall, blond, and unbelievably handsome. He kicked off his shoes as he entered the house and put his hand out to shake mine.

My friend stood there, her jaw on the floor.

“I’m Ben.”

There was something in his eyes. It was a kind, sympathetic look that went straight to my heart. I knew nothing about this boy, or what kind of experience he had had, but I knew he was special.

“You don’t have to take off your shoes,” I said.

“I have two brothers. My mom always makes us take our shoes off when we come in the house,” he said, smiling.

Ben told me a little bit about himself. The sympathetic look turned sorrowful when he related that he had lost his father a few years back in a car accident, and that his mother was working hard to put her three college-age sons through school. He wanted to work as much as possible to lighten her load.

I, in turn, explained our situation to Ben, and he listened, nodding compassionately. He admitted that he knew nothing about autism, but was willing to learn. While I was telling Ben about some of Matthew’s behaviors, and how best to handle them, Matthew emerged from his room, where he had been playing video games.

“Matthew, this is Ben,” I said cautiously.

“He looks good,” Matthew announced. Ben took Matthew out that very afternoon.

“Maybe you can play basketball or go for a hike or—”

“We’ll be fine,” said Ben reassuringly, and off they went in his blue pickup.

When they came back, Ben and Matthew looked tired and happy—almost fraternal. They had driven to Ben’s dorm room to hang out, gone for pizza, and listened to music. Ben had shown Matthew the football stadium where he played and had introduced him to some of the guys on the team. They had gone to the pool and done cannonballs off the diving board. Guy stuff.

I handed Ben a generous check—bribery, of course—and asked if he would be interested in coming again. “Sure!” he answered enthusiastically. I gave him some information about autism to read over, and he went to find Matthew before he left.

“See ya tomorrow, my man,” he said to Matthew, to which Matthew replied “That’s cool” and swaggered out to see Ben zoom off in his truck.

Ben became a fixture at our house, coming three or four times a week to hang out with Matthew. John and Andy always ran out to meet Ben when his blue truck rolled into the driveway.

“Come look at my new guitar!” said Andy.

“I got a new video game!” John called. Ben spread the wealth of his presence, but remained loyal to Matthew and heeded his call.

“Andy and John, I’m sorry to have to tell you this,” said Matthew, “but Ben is my friend and not yours. We are very busy and don’t want to be messed with. Let’s go, Ben.”

Not all of their outings together were totally fun and games, and Ben worked hard to manage Matthew’s public peculiarities, coaching him gently through his social awkwardness. He explained that “How’s it going?” works better than “Do you like me?” and showed him how to nod his head oh-so-slightly in the process.

I paid Ben well and often sent him home with clean laundry and a batch of cookies. But there were many times when he would drop Matthew off and refuse payment.

“It wouldn’t be right, we had too much fun,” he would say, even as I attempted to throw a wad of well-deserved money into his truck as he drove off laughing.

Matthew loved going to the mall with Ben. His charismatic good looks and great personality attracted an array of pretty, flirty girls who would otherwise run from Matthew’s desperate, hungry gaze.

“Hey, man, you’ve gotta be cool. Don’t stand so close. Girls don’t like that.”

Ben’s influence on Matthew proved the phrase “The impact of the message depends on the messenger.” He welcomed my calls for help when my message failed to make an impression.

Ben? Matthew’s having a hard time understanding that he shouldn’t put his arm around a girl he doesn’t know. Can you talk to him?

Ben stayed connected to our family through his four years of college and even went on vacations with us during the summer to help with Matthew, but he always blended in like a member of the family.

“Four sons!” said a grandmotherly type one night when we all went out to dinner.

“Yeah,” replied Ben, winking at me. “Isn’t our mom the best?” I blushed.

At Ben’s graduation, I overheard one of his uncles exclaim, “Now all he has to do is convince someone to hire him!”

But I knew that whoever was lucky enough to get him would never regret it.

 

San Francisco Chronicle
October 21, 2007

Link to original article

“I’m ready now.”I turned to look at my son Matthew, who is twenty-one and autistic. He stood in the doorway of the kitchen looking pleased with himself, wearing grass-stained socks and sandals and a clean striped shirt tucked into shorts cinched up high with a belt. His handsome face was clean, but there were several spots he had missed while shaving that morning. His sandy blonde hair was combed straight forward in a most unflattering Dumb and Dumber sort of way.

“All right,” I said, “just comb your hair to the side and do a quick shave and we’ll be on our way.”

If I could just dress Matthew myself he would look great, but I had to respect his desire to be treated like a regular 21 year old.

He had been working obsessively in the garden all morning, and I’d promised to take him to lunch at his favorite restaurant-a nearby ice cream parlor- as a reward.

When we pulled up to the restaurant, Matthew sprang out of the car and ran in, and I followed closely behind. It had been a while since we last visited the restaurant, and it appeared that the employees that we’d known before had moved on. The anxiety of being unknown and of having to explain Matthew’s disability filled me with dread.

Before the waitress could seat us, Matthew rushed over to a table decorated with balloons. A group of 11 or 12 year old girls, all grasping long handled spoons, gathered around the parlor’s signature watermelon-sized ice cream sundae.

“Whose birthday is it?” Matthew asked excitedly as I hovered warily behind him.

“Mine,” said the young girl at the head of the table, raising her hand timidly. Her mother, sitting at the other end of the table, looked nervous, and the manager appeared in a flash.

It was obvious what the mother and the manager were thinking. My odd looking son must be some kind of pervert, a pedophile like those on the TV show To Catch a Predator. I tried to understand their perspective; I’d probably react the same way if I had daughters of my own. I stepped closer to make it apparent that Matthew was closely supervised.

“Happy Birthday!” Matthew said with a goofy grin, “How old are you?”

Before the birthday girl could answer, the manager stepped in front of him.

“Please take your seat,” she said sternly, pointing at a booth around the corner.

“I’ve got him,” I said, my heart pounding. “We’re together.”

Mercifully, Matthew cooperated and seemed oblivious to the sudden tension in the restaurant and the stares he was drawing. I wanted to leave, but knew Matthew wouldn’t understand why, so we stayed.

The waitress, who had picked up the negative vibe, scribbled down Matthew’s order – the tuna melt and the hot fudge sundae with extra cherries- avoiding eye contact.

“Just water for me,” I said cheerfully for my son’s sake.

After ordering, Matthew got up to wash his hands, but when he walked past the birthday party toward the bathroom, the manager stepped in front of him again.

“Sit down”, she ordered, and I popped up.

“He just wants to wash his hands,” I said under my breath. “Is there a problem?”

“My customer does not want him interacting with the children. He’ll have to wait till they leave.”

“I’ll stand by the door,” I said quietly, “and there’ll be no interacting.” I could have stomped my foot and told this woman where to go, but cool and calm was needed to clear the air.

“Thank you,” she said, and the mother led the children out of the restaurant while Matthew washed his hands, leaving me with a heavy feeling in my chest. When we sat down again, Matthew asked why the manager was so “strict”.

“I was being nice,” he said.

“Remember how I always told you not to talk to strangers when you were little?” I said. “You were a stranger to those girls, so the mother and the manager got nervous”.

There was so much more to say, and I needed to think long and hard about how to say it.

How could I explain this emotionally charged and complex side of life in simple language that my socially inept son could understand? How could I find the right words that would prepare him for the next social crisis?

When Matthew finished his lunch, he got up to wash his hands again and I cringed as he completed his restaurant ritual of tracking down and thanking the waitress. I watched as the two exchanged a few words, then Matthew turned around and laughed while the waitress smiled slightly and shook her head.

“What did you say, Matthew?” I asked as we drove home.

“I told her I was pretty strict, too”, he said with his crazy grin, “and she could not wash her hands.”

I couldn’t help but admire Matthew. He may not have been known when he walked into the restaurant, but he sure was now.

***

Read the first three chapters of  Laura’s book REGULAR GUY: GROWING UP WITH AUTISM here.

ORDER HERE

link to original article July 2007

It was July 30, and the first day of relief from a record breaking heat wave in the San Francisco Bay Area. I stood anxiously by the escalator at the Oakland Airport waiting for my twenty-year-old son Matthew to arrive from Pennsylvania. Matthew is autistic and has been attending a special residential school there since he was 15.
He would be home for a five-week break. Worried that he would be lonely and adrift as in summers past, I hired a companion who worked at his school to fly Matthew home and stay with us for three weeks.
His name was Kim, a twenty-five-year old from South Korea who had joined the staff of Matthew’s school just a year earlier. I had heard good things about Kim, but was nervous because our communication through phone and email, though cheerful, had been awkward. His English was difficult to understand, and I wasn’t sure he understood the notion of “friend to hang out with” rather than “policeman”. Matthew was painfully aware of his disability and need for support, but despite his innate social ineptitude, he craved independence and friendship, and wanted to be viewed by the world as a regular twenty-year-old.
In the past when I had hired “friends” for Matthew, I’d had the benefit of meeting them first in person to see if the chemistry was right. When Kim and Matthew came into view at the top of the escalator, I saw no chemistry. My son, wearing a t-shirt, shorts and sandals, rushed ahead of his smiling companion.
“I’m not with him,” said Matthew, frowning in earnest. “I don’t need a babysitter.”
“He’s not a babysitter,” I said, shaking hands with the stranger in front of me, “Kim is our friend!” Matthew rushed ahead to the baggage claim. “Did you have a nice flight?” I asked Kim, who shrugged and smiled.
It’s gonna be a long three weeks.
The first few days of the visit Matthew avoided Kim, and my husband and I and our other two teenage sons tried manically to make Kim feel useful and at home, talking to him, struggling to understand his English, inviting him for walks and meals, and asking him to help with the dishes. By the third day, I was exhausted from smiling, talking, and suggesting activities for Matthew and Kim that fell flat.
“Do you want to go to the movies with Kim, Matthew?”
“No”
“How about a hike?”
“No hikes.”
Feeling like a prisoner in my own home, I left Matthew and Kim alone together while I took our four-month-old Labrador puppy, Cali, for a walk. When I returned, there was a police car in the driveway.
“He’s stalking me!” Matthew was telling the policewoman who had responded to his 911 call. Kim smiled nervously and paced around, and the officer looked confused. I explained the situation and apologized profusely. She said she thought she’d seen everything till today.
“Look, Matthew,” I sighed, “Kim is our friend. Will you please be nice to him?”
“Probably not,” was his response.
There was no way I could endure this kind of grief for three weeks, and I wondered if I should just pay Matthew’s friend for hire the full amount that I had promised him and put him on a plane back to Pennsylvania. But then I glanced at Kim who was stroking the puppy, and I could see he was a person who smiled even when he was hurt. Somehow I had to make his visit a successful one.
“Matthew has some yard work to do,” I said. “Could you do me a big favor and wear this puppy out?”
Kim nodded eagerly, and the two fled to a walking path around the corner. Later that evening, Kim took Cali for another walk, and came home looking exhilarated. Did we have any movies he could watch on his laptop, he asked? As I was reaching for The Sound of Music, my thirteen year old handed him the first season of “24″, a cult show among teenagers about the dangerous adventures of no-nonsense counter-terrorist agent Jack Bauer. The next morning Kim slept in, and admitted sheepishly that he had been up half the night watching the series.

“That’s OK,” said my thirteen-year-old, “We’re addicted, too!”
By the fifth day of his visit, Kim had settled into a happy routine of dog care and other chores, amiable family dinners and evenings with “24″. On day six, a Saturday, Matthew knocked on Kim’s door, and asked him if he wanted to walk downtown and get some pizza.
“I decided that I might like Kim,” said Matthew when they returned, and I heaved a sigh of relief, grateful that the web of reverse psychology that I had woven out of desperation snagged Matthew. I stopped counting the days until Kim’s departure, as the two bonded over daily walks downtown.
The morning of Kim’s departure, Matthew told him not to be sad-he’d see him in September. But Kim had a hard time saying goodbye to Cali, and knelt down to cuddle her one last time. He was still smiling, but I saw a tear cascade onto the puppy’s shiny coat.
“You are going to miss uncle Kim, aren’t you Cali? Let’s take your picture with him.” As Kim grinned for the camera, I was grateful that the painful scene at the airport three weeks earlier had unfolded so magically. It seemed that by turning our constant focus from our autistic son to the needs of our houseguest, Matthew was free to befriend his friend for hire in his own time and in is own way.
The next morning, an email message from Kim arrived. It remains on our refrigerator along with his picture with Cali.

So much thank you for you, and family,
and my niece Cali.
It was a great 3 weeks for me….my best summer in life.
Thanks a lot for giving me such a nice memory.

Kim

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“It’s So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success” (Touchstone/Simon and Schuster). www.jimlavoie.com