By Glen Finland
Sunday, May 10, 2009
We had spent the end of last summer riding the Metro -- my son David and I -- not so much going anywhere, just riding from stop to stop. Counting the look-alike stations between Clarendon and Metro Center, hugging the right side of the escalator to switch to the Red Line, then coming up for air in the river of humanity that is midday Chinatown.
So it goes, when your handsome 21-year-old -- a rangy six-footer with a sexy 5 o'clock shadow -- has the mind of a good-natured 9-year-old. Pervasive developmental by his swinging an imaginary baseball bat whenever he's really happy. Feet squared, wrists piled up high on his right shoulder, and swoosh! The impulse reflects an open innocence that's way too friendly when it comes to strangers. At Eighth and F streets NW, when a homeless man asks him for change, David pulls out his wallet and says, "Okay, how much?"
But if he could learn to ride the Metro, my husband and I believed, then he could travel to a job site; and when he locked down that job, he could pay his rent. With a job and an apartment, he would have a real life. And who knows? Maybe even find somebody other than his dad and me to love him well into the future. It was a goal we could all agree on. David swung his imaginary bat whenever we talked about it.
So at the end of the summer, David and I got cozy with all the different Metro routes. We visited the zoo and met the guy who scrubs the elephants' backs. We surfaced in Chinatown, where he walked around with a starry-eyed look on his face because of "the pretty Korean girls." One morning, we hopped off at Smithsonian Station for him to run to the Lincoln Memorial while I waited on a bench in a light downpour. (Despite his early diagnosis of cerebral palsy, David can run like a deer.) At Arlington Cemetery Station, we followed the path to Section 60, where we sat beside a 19-year-old Marine's grave and talked about the war in Iraq. David would like to be a soldier, and he wasn't interested in my political musings. Instead, he wondered if the soldiers had lived good lives before they died. Another day, we raced up the escalators toward the wrong train and ended up in Shady Grove, then turned around and doubled back. We didn't have anywhere we had to be that day. No worries.
It stayed that way until the August afternoon when David told me he was ready to go it alone. We both knew this was coming; it was, in fact, exactly what we'd been working toward. I just hadn't realized he'd be ready sooner than I was.
David was born in 1987. He was a failure-to-thrive baby who spit up half his birth weight during his first months before doctors diagnosed reflux and mild cerebral palsy. He did not walk until he was 3. When David was 5, a neurologist attributed his developmental delays to a combination of autism and static encephalopathy -- a brain pause that impairs intelligence -- like a circuit misfire in the brain. Imagine driving through the mountains, hitting static on the radio and suddenly losing the music. Sometimes, David loses the music.
But by the time he turned 7, every doctor we saw offered us a different diagnosis. A specialist added on a mean mix of ADHD; obsessive-compulsive disorder; and Tourette's syndrome, a neurological disorder of involuntary and repetitive motor and vocal tics. The tics include eye-blinking, head or shoulder jerking, facial grimacing and, in David's case, snorting sounds often combined with an upper body twist, a hop and a punch to his own mouth. Just watching this child sleep could wear me out.
By age 15, David had grown tall, with high cheekbones, and was so thin I could count every notch along his spine. His twisting body kept him busy corralling the tics that jerked him around and sometimes burst out of his throat without warning. Once, during a National Theatre matinee of "Cats," his tics nearly got us tossed out of our third-row seats. The usher said David was distracting the cats.
Even with the difficulty in conveying his thoughts, David made it clear he wanted to be included in the mainstream activities at his public high school -- and not just the special education program. But teenagers have their own hierarchy, and even the most accepting ones play by their peers' social rules. The mascot syndrome revealed itself in well-intentioned pats and hugs from passing acquaintances in the halls, but the phone never rang for him at home. In 2005, he would turn 18. There had never been any hope of college or SAT tests. What would happen after high school?
The school psychologist recommended a relatively new approach -- an expensive, two-year program called the College Living Experience. The downside was its faraway location in Fort Lauderdale, Fla. However, it had a residential component geared toward independent living, teaching task completion, money management and social skills to developmentally disabled young adults. So in 2006 -- after two decades of navigating Fairfax County's murky special education system, and investigating expensive drug therapy and psychiatric care -- my husband, Bruce, and I enrolled David in CLE, which is adjacent to the sprawling Broward College campus in South Florida.
David was all for it. "This is my college -- right, Mom?" he asked.
David has always operated under a different reality, his functioning compromised by both his cognitive limitations and his fine-motor weaknesses. Standing in line with me at our neighborhood grocery store where he had worked for a brief time as a courtesy clerk, he jerked his head like a pogo stick and proudly told the cashier that he was going off to college in Florida. This was the same woman who had him fired for staring off into the distance and not taking care of a cleanup in the aisles. "Really," she said, rolling her eyes. Then she handed me my change.
What kind of middle-aged parents don't look forward to the time their adult children are able to live on their own? With David's two older brothers grown and out of the house, the prospect of becoming real empty nesters gleamed in the near future for Bruce and me. Still, I struggled with David's risky move into an apartment 1,000 miles from home. After decades of being my intellectually disabled son's advocate, hard-wired to protect him, how could I just shut off my dependency on his dependency on me?
That was not how my husband saw it. "I just want some time alone together," he said, his eyes lighting up, "before we get old and floppy."
So Bruce began what was to be a summer of early preparation. He doled out instructions to David on how to open canned goods, boil water for pasta, shave himself, cut his toenails, do his laundry and send an e-mail. It was hard work for David, but for Bruce, who is not known for his patience, it was excruciating. If David got bored, he would just walk away from the boiling water. If he got frustrated, he would drop the razor mid-shave, leaving a ring of white cream around his jaw, and go chase the cat.
"Like pushing wet cotton," Bruce said, but he kept at it. Still, sometimes Bruce's rat-a-tat style and multi-step directions would backfire. Like the lesson on sandwich-making.
"With this skill, David, pretty soon, you can get a job making sandwiches in a deli. But," Bruce would warn, "you have to wash your hands first." Smiling now. Upbeat. Then: "No. Not like that. You have to use soap. No. You have to get in there and really scrub. No. Not like that. Come on, David, really scrub!"
Pushing David beyond his limits resulted in crumbs everywhere, a huge glob of mayonnaise on the top of his shoe, no trace of a sandwich and Bruce shouting: "Finish the job! You wanna live here with Mom and me forever?" Which was my cue to walk in and growl: "Leave him alone! You're giving him too many directions at once!" And while Bruce and I faced off, David would open and close his fists, as if he could shut us both up with the fragile strength of his hands. Then he'd drift off into another room to play with the cat. Lesson over.
Still, when August came around and it was time for David to move to Florida, Bruce pronounced David ready. Ready for the chance to succeed or fail on his own. "He wants out," Bruce assured me, "wants his own place, his own life. Let him go. What could happen?"
On the long drive from Northern Virginia, with the U-Haul trailer tugging, we crossed into Florida. On a road trip, you can't ask for a better traveling companion than David -- if being on the lookout for police cars is your thing. "Look quick, Mom -- Homeland Security vehicle!" "K-9 officer coming up from behind." "Duval County sheriff's car!" David has always liked cops because he believes they're the good guys, and he loves cars because they're fast.
Well, honey, welcome to Florida.
South Florida drivers take off from red lights like they're shot out of a cannon, catching pedestrians halfway across the intersection, then saluting them with the finger for making them wait.
This is where we had chosen to leave our son.
At the orientation, I looked around the room at an exhausted group of parents and recognized in all of us the effects of decades of steady advocacy: the fatigue, the frustration and the anxiety attached to avoiding a missed step for your special needs adult child. None of the couples seemed to be touching; in fact, we looked like a room full of shock victims. There would be no trophies here for our kids, no cheery crossing of the finish line accompanied by a Best Buddy and a flashbulb. Instead, the director insisted now was the time to take off the training wheels. "Let the kids feel empowered by their new living situation. Allow them to make mistakes -- because they will -- and then let them become the problem solver."
David and about 100 other CLE students would be scattered throughout a large public apartment complex, where they would microwave their own meals and be expected to make it to vocational training classes on time every day. Adult resident advisers lived within the complex, but this was not a 24/7 managed system. There would be no bed checks here. We bought David his first cellphone, and for weeks before the move the three of us recited those digits -- along with his Social Security number -- out loud throughout the day.
David's first e-mail home read: "hey i was just wondering how i can get hot water for my oatmeal if i eat it. Because the sink water dosent work."
"At least he figured out the Internet," Bruce said.
During weekends at the independent living program, the students were left mostly on their own. Drawing on a happy childhood memory of a kind Pentagon Police officer who had given him a few rides in his cruiser, David got into a routine of dropping by the nearby Broward County police station to take cellphone photos of the parked squad cars. It wasn't too long before he was escorted off the property for peering too closely. So, he returned to his apartment, got on the Internet and discovered Web sites of police cars for virtually every city in Florida. He'd print out the photos on Monday mornings at his school and bring them back to his bedroom to stick on his wall. When Halloween rolled around, he decided to dress up as a cop. He walked seven blocks to a uniform warehouse and bought himself a black POLICE T-shirt and a riot helmet with a face mask. When the big night came, he set out to patrol his apartment complex grounds, cautioning the trick-or-treaters to Be careful! and to Watch out for cars! The sight of a tall thin fellow in blue jeans and a riot helmet apparently spooked several parents. Soon enough, management was called in to usher David back inside his apartment with a no-nonsense warning about impersonating an officer.
With David in Florida, Bruce and I were suddenly liberated. Gone, too, was David's habit of unclasping our fingers to separate us anytime he saw us holding hands in public. Absent that tension, a simple, quiet rhythm crept back into our relationship. It felt solid, familiar and promising. Coming home from our jobs to an orderly house, dinner became a beautiful event for us. Bruce, the better cook, revived his favorite recipes, stopping nightly at the market to shop for fresh produce. I'd hop up on the cool granite counter, sip a glass of wine and toss the salad while we talked about our day. Sometimes, after dinner, we would dance. It began in the kitchen and, even on cold nights in coats and gloves, we'd open the doors and slow-dance ourselves outside under the trees.
For the first time in 25 years, we didn't have to manage someone else's life hour by hour. Somehow, my husband's clear-eyed approach had unchained me from the tyranny of being the good parent. I did not feel guilty, but the new freedom struck me as flirting with danger, like driving down a dark, country road with the headlights off. Two days in a row might pass between phone calls from David.
The call came one February afternoon, just before nightfall. It was six months into David's CLE stay. I hopped off the treadmill and leaned against the basement wall, the one I'd helped the boys' paint with their signature red, black and purple handprints in 1995. I remember joking that we'd always have their fingerprints handy if they didn't show up for dinner some night.
"Mom." David sounded excited. "Guess where I am?"
"Don't know, sweetie. Where?"
My throat closed up tight as David explained a man named Nelson from the Internet was driving him into the Everglades. They'd met up at the drugstore.
"Put Nelson on the phone, David."
There was some background rumbling before David came back on the line. "He says he doesn't speak English."
"David. Get out of the car. Now."
"I'm on the highway, Mom."
"Nelson!" I roared to this stranger a thousand miles away. "Bring my son back this minute. I'm calling the police now!"
"Okay, okay, okay," said the voice in the background.
I kept David on the line: "What does the big green road sign say now? What color is Nelson's car?"
I took notes while Bruce called in details to the Broward County police. There was an employee named Nelson at the drugstore near David's apartment, and the police ran a security check on him. Nothing turned up. No laws had been broken, and, after all, David was legally an adult. The police told us there was nothing to do but wait. Forty-five agonizing minutes later, I heard a car door open and close, Goodbye, and a single set of footsteps slapping up the stairs. I counted them. A key turned in a door, and David spoke into the phone, "I'm home, Mom."
To him, it was just another adventure.
Much of Florida utterly delighted David. Eight-inch Jesus lizards with a predilection for running on water scampered about on their hind legs, arms open wide. When we visited, green-feathered parrots whistled at him from the tops of palm trees. David has always loved birds, and those crazy parrots really cracked him up. The months passed quickly, but the highlight of his two years in Florida came toward the end, after he scored a volunteer job at the Abandoned Pet Rescue shelter in a run-down strip mall off Ninth Avenue. There, a loud-mouthed "guard" parrot named Bueno screeched at visitors like a club bouncer. Heavy feral cats leapt onto aluminum bookshelves stacked with cat food and kitty litter. Kittens slept in open desk drawers. Thirty to 40 caged dogs barked in wild desperation whenever David opened the doors to clean their quarters. His job was Feeder and Scoop-up Man, and, along with his grooming chores, he loved the work. He stayed focused and finished the jobs he was given, gently brushing the cats in his free time. He did so well, one day he called home with big news.
"The shelter lady offered me a job. She wants to pay me, Mom."
The school confirmed it, and our hopes skyrocketed. I called his big brothers and squealed, "David has a job!" For two weeks we dreamed of him on his own: a steady income; the bus route he'd need to master; the prospect of his own set of friends; how often we'd get down there to visit . . . Bruce called the county vocational training counselor to nail down the salary schedule so that we could begin to make a budget plan, but received only vague promises of a callback. When the call finally came, it was dispiriting:
"Somebody jumped the gun here," said the counselor. "The shelter would hire David if they had the extra money. But there is no extra money. And there is no job."
And so, after two years of living on his own and with no prospects for another job, the program had come to an end. David was headed home to stay.
It took a few weeks for us all to get used to each other, but David was back, and the cat was sleeping in the bend of his knees again. The first thing we did was put his name on a county group housing list, gamely landing at the end of a line with a three-year waiting period.
David is 21 now, has grown another inch taller, and needs to be reminded to shave every day. However, with a mother's perpetually tested hope, I sense a welcome new level of curiosity in him about his future. Lately, instead of surfing the Internet for photos of police cars, he's searching for job openings at local animal shelters.
David and I spent his first few weeks home reversing the avalanche of paperwork that involves updating Supplemental Security Income, Medicaid and Department of Rehabilitation information whenever a recipient changes his address.
We stood in line again at the crowded SSI office to push his benefits as high as legally possible. During the long wait, I couldn't help but notice the silent young woman in a wheelchair in front of us. Her legs were cut off at the knees, and her face was disfigured. What stuck out in my mind was that she appeared to be all alone.
Four hours and a lost day's work later, our mound of paperwork was completed. Stepping out of the SSI office into the sunshine, David let loose a day's worth of pent-up tics by setting his feet shoulder-width apart and swinging his imaginary baseball bat over and over again. Just happy to be out in the fresh air and free to tic away, free of all the social workers talking over his head to his mother about what he planned to do with the rest of his life.
On the ride home, the haunting image of the legless woman returned to me. I looked over at David and said, "Dave, do you realize what a lucky guy you are to have someone love you enough to go through what we just did today?"
"Yeah," he said, pausing a beat in his traffic-watching, " -- who?"
Every day for that last week of August, David had been bugging me to let him ride the Metro alone. Then, early one morning, he walked into my bedroom wearing a camelback water bottle and his brother's old lacrosse helmet.
"I'm ready for the Metro, Mom," he said.
"Lose the helmet," I said, "and you're good to go."
Later that morning, we agreed, I would ride with him to Metro Center, and from there he would go solo.
At the top of the mezzanine stairs, I told him good luck, and off he went.
Then I slipped into the crowd after him. From there, I shadowed him without his knowing it, darting behind a commuter's newspaper like in a bad spy movie. I glued myself to the opposite side of a Metro directory pole, biting my lip as David studied the wrong color line. At that moment, I mentally willed him to choose the Orange Line. A train came and went, and there stood my boy, quietly staring down the tracks as he waited for the right train.
The rumbling grew louder along the tunnel walls, and David's eyes seemed focused on the blinking lights that signaled the Orange Line train's approach. Suddenly, it was here: the moment I would have to let go.
If I hopped on that train behind him, he would see me for certain and know I didn't believe in him. I made a quick mental note of what he was wearing when last seen -- the loose khaki shorts, the navy blue Pentagon Police T-shirt, the white baseball cap with the logo . . . but which team was it? Unexpectedly, David looked over his shoulder, and I thought I'd been found out. But it wasn't me he was looking at. It was a lovely Asian woman who had stepped through the doors of his arriving train and dropped a handful of papers onto the platform. David walked up to her, said something I couldn't hear, then bent down to help pick up the papers. She smiled, nodded her thanks, and stepped out of the way, just in time for him to slip onto the train in front of me, only an arm's length away. There was still an instant for me to leap into the breach when the big voice came over the PA system: "Step back. Doors closing."
Through the windows, I caught a last glimpse of David, standing there a head taller than most of the other commuters. I could make out his white baseball cap but, Oh, which team did he like?
Too late. The doors shut. He was less than 10 feet from me now, but on the far side of the glass, headed directly into the dark tunnel. He stood off to himself in the back of the train. I couldn't see his face from this angle, but I caught the movement of his silhouette as he set his feet shoulder-width apart, stacked his fists together high over his right shoulder, and swung hard.
Glen Finland is a freelance writer who teaches writing at American University. She can be reached at firstname.lastname@example.org.