A Regular Guy: Growing Up With Autism
Now, here is the wonderful essay “Love Lessons”, by Laura Shumaker:
It was February 16th, 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 three years before, and I thought it would be fun to go over the President’s Weekend break. When the storm hit I almost backed out, but maternal love and guilt pushed me forward.
When I pulled into the snowy driveway of the house where Matthew lived, 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. A self-proclaimed gardening expert, 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.
“There will be a lot of pretty girls in Washington D.C. this weekend,” Dawn warned me under her breath, then waved us on our way. “Good luck!”
I heeded her warning, but as Matthew’s mother, I had seen it all, and was optimistic that I could manage his girl-crazy behavior and coach him successfully.
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 – Mathew’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 wearing identical t-shirts 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, that the reward for my sacrifice would be heartache for me and frustration for Matthew. It had been easy to fantasize about this trip from California, where the magnificence of Washington was uncluttered by snow, crowds, and hot middle school girls. But here we were, at the entrance of the Botanical gardens. I had to try to make our day a successful one.
Matthew 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. This was not a good place to be running after a suspicious looking son, and 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?” demanded the no-nonsense 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.” So gripped by his desire to connect with pretty girls, 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, echoing the words he’d heard directed toward him so many times before. 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. But darn it, I wanted to see the Capitol myself.
“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. There was a special Saturday session debating censorship of the Iraq war. 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 add to my tension, 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 glanced at the security guards. Matthew had gotten their attention. What would they do if he erupted again? Just as Carl Levin rose to speak, Matthew twisted around again, tapped the knee of another girl behind him and waved 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 one of 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. The obvious explanation would be that since 9/11, it was more important than ever keep a low profile. But how in the world could I communicate that to a person devoid of common sense?
“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 and valid 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.