Four Visits

I hear her high heels tapping down the polished hallway.  She had an intermediary call me to ask if I knew of any people in need; I mentioned a longtime colleague, retired and alone now, with some serious health problems.  There was, the intermediary said, someone who wanted to help a person just like that this Christmas.  That someone would stop by with an envelope, and she would be grateful if I would just address and mail it.

It was an easy task to agree to do.

I am thinking this must be a seasoned benefactor…someone comfortably settled, perhaps with children established and in no need of mama’s money.  But the heels belong to a young person who is far from rich. She is, though, smart, clever, and thoroughly professional; she and her husband came unexpectedly into a tidy sum, and they decided to split it. Half goes to someone he found who is in need, the other half to someone she identifies: that’s their Christmas gift to each other.

She hands me a thick envelope with a name etched on it; her joy at perpetrating this unacknowledged act of giving is boundless.  She swears me to secrecy, wishes me a merry Christmas, and taps away.

I address and stamp the envelope and slide it into the mailbox across the street.

********

Ducking her head, eyes hidden beneath a long bang, she hands out hand-folded boxes to each of the board members.  Open them! she urges. We do, and are amazed at the painted ornaments–with snow-covered pine trees, fat red cardinals perched on snow-dusted branches, beaming Santas and frolicking snowmen, rigid nutcrackers and graceful ballerinas, gracing their tender, curved glass sides.

We gasp; they are exquisite.  She laughs delightedly.  She grasps her hands and bobs a bow.  She is so proud.

She is a recovering addict become an artist, someone who wanted to say thank you to the board that okays the funds that support the program she first went through and now works for.  She teaches others, now, to paint; she donates paintings to be auctioned off to raise funds for the program.  She has worked through a long, bad tunnel, and she has emerged into the light.

Beet-red, triumphant, she slides out of the conference room, waving a merry Christmas to all.

**********

We gather around the table–eight old friends missing two more who are at a different gathering that day,–two who are mourning a loved one lost too soon.  The candles glow, Keith invokes a warm and personal grace, and we tuck into herbed rolled pork, potato pancakes and applesauce, crusty homemade bread, a savory slaw, and Larry-made pies.  It is a meal as delicious and unique as the home in which we gather.

The long table sits on polished concrete floors; whitewashed beams gleam high above us.  This was once a gas station; it now is Kay and Brian’s home, with a sleeping space defined by walls cleverly constructed of three-deep packing pallets strung with twinkle lights. The kitchen is a tiny marvel of high-tech efficiency, the bathroom small and snug and wonderful.

Kay has her studio; her paintings enliven the walls of the whole space–new paintings, larger, growing evermore strong and bold, like her amazing and constantly maturing talent. Brian has his work-space.  Together, they have stories to tell of mishaps and triumphs, but it has been worth the trek: their vision of this extraordinary home-space is realized.

Kay and Brain live at a midpoint; after that wonderful meal and a chance to really visit, we reluctantly move outside.  No parking problems in a former service station: we linger by the cars. We listen to the gentle burble of the fountain Brian constructed, and which is, in this oddly warm winter, unhindered by ice.  Finally, with hugs and plans to meet again in 2016, with shouts of “Merry Christmas!” we climb in our cars and pull out, headed north, south, and west, into the darkness, strengthened by the rekindling of that friendly warmth.

**********

Jeff is the counselor who organized and oversaw a wonderful program Jim took part in several years ago.  Jeff keeps everyone connected with email updates and invitations to reunions and notices about who’s graduated, who’s gotten a job, and who might need a little support.  This week he emails that a young man from the program is alone this Christmas.  He wonders if anyone would like to spend an hour or two helping the boy celebrate.

I mention it to Mark and Jim, and both of them, without hesitation, say, “Of course.”  Tight-throated and misty, I email Jeff to confirm.

We pack up cookies, write out a card, grab a game, and bundle into Mark’s car for the ride to the city at 11:30 or so on Christmas day.  We arrive at the boy’s house just a shade early; he is standing out front, tall, bearded, and gangly limbed–sort of Abe-Lincoln-y–yelling into a cell phone.  We park and approach and he looks at us, a little frightened, and yells into the phone that he has to go, there are PEOPLE here!

Jeff pulls up at that moment and we usher into a small, tidy apartment, with sparse furniture, white walls, and hardwood floors.  There is a little fabric tree; there is one present underneath it.  Jeff, Mark, and Jim lug in folding chairs.  Our host pulls chicken nuggets and french fries from the freezer; we locate one baking sheet and make chicken and potatoes share.  Jeff produces a veggie lasagna; he figures out the intricacies of the oven.

People start to pile in, three more families with kids from the program.  The table groans with drinks and cookies and fudge and a frosted cake–turns out, it’s not just Christmas: our young host has a birthday today, too. A pile of presents grows beneath the tree. The kids talk about Star Wars and superheroes and debate DC versus Marvel; a young artist passes around her cell phone to share her truly incredible artwork.  A young guitarist shows us his band’s professional calling card.  The food is hot; people grab plates,and our host sits in the place of honor, munching and beaming.

This was a group of strangers for mere moments.  Now we pass presents to the birthday guy; we take pictures; we cheer and exclaim.  Excited, he runs upstairs to change into a brand new shirt and, when he emerges, he gets a round of applause.  We eat cake and those frozen ice cream cones with the tops dipped in chocolate and nuts.  Jeff tries to get some singing going, but the attempt crashes and burns amid laughter and groans.

In the kitchen, gathering up, Mark and I talk with a young man (call him Matt) who’s a staff member, someone who works shifts in this little apartment so the birthday guy can successfully live on his own.  Matt tells us he’s actually off-shift, but he couldn’t stand the thought that our guy would be alone on the holiday–on his BIRTHDAY.  Jeff, Matt says, is amazing; this was probably one of the best Christmas-birthdays his young charge has ever had.

Jim shakes a lot of hands; the young people trade info; they promise to write and email and keep in touch.  We all take information about a zoo-lights expedition coming up the day after New Year’s. We part with hugs and laughter and hopes to see each other soon.  The ride home takes less than an hour; in 90 minutes, the oven is heated and the rib roast is scenting the house. The roads were great, the trip was no big deal–but the gathering was pretty major for a young guy who expected only to be alone.

***********
Such gifts this holiday season: of generosity, of artistry, of creation, of gathering and goodness.  Dark falls shortly after we arrive home, but it’s no threat. There is light.  In this season of darkness, I know there is light, there is warmth, and there is great, great hope.

Advertisements

The Iron Man Interview

 

If you’ve met one person with autism…

I just learned a catch-phrase often used in the autism community. It goes like this: “If you’ve met one person with autism, you’ve met one person with autism.”

Today, on April 2nd–Light It Up Blue for Autism Day, at the beginning of National Autism Month, — I can’t tell you what the autism walk is like for everyone. I can’t say definitively that these are the causes, symptoms, problems, joys, and challenges all people on the spectrum experience.

I can tell you, though, in a mother’s voice, about one autism hero. My son, James, is 24, and on the autism spectrum.

James is a big guy, 6’2″ or so, and broadly built. He has the thick head of hair my mother’s genes so generously bestowed on many of us; the red glints come honestly from both his Dad and me. Jim has Mark’s brown eyes,–eyes just like his brother Matt’s– as brown and glossy, we used to say when they were each little, as M & M’s. Jim’s eyes seem to snap when he is intrigued, compelled, or outraged.

Big guy that he is, Jim has never been much interested in competitive sport; competition is not a language he speaks. Instead, he’ll walk endlessly, pumping his arms, listening to music on his smart phone, writing–I’m guessing–sagas in his head. Writing is Jim’s passion, and he feeds that passion with film, television, role-playing video games, and books. He started reading at an incredibly young age, and the world of story shapes and defines his life.

At 24, Jim is just beginning to find his stance. The transition from a structured school experience–the end of high school–to a life of choices and options and uncertainty has been difficult for Jim. As I read more, talk to more families, and get to know more adults on the spectrum, I learn that this is one of the few things that can be said universally of [almost] all adults with autism.

Education and job-training programs are built with a kind of ‘one size fits many’ philosophy, and they don’t often work for people with autism. In the adult autism community, unemployment is outrageously high; one study I read recently places it at 85 per cent. The college completion rate, too, is much lower than the average, despite the fact that many autistic adults have higher than average intelligence.

When Jim walks in and sits down, people who’ve just met him don’t say, “Hey. Gosh. A disabled guy.” But things that neuro-typical folks would brush off, cope with, or accommodate, are impassable boundaries to him. (This often appears to be laziness or defiance to people who have no training in, or familiarity with, spectrum individuals.)

Autism seems to mean that a layer of protective insulation against sensory bombardment has been peeled away. Jim is particularly vulnerable to sounds and smells; he couldn’t stand one job, for instance, because Top 40 music played, loudly and constantly. The coordinator, very sensibly and fairly, tried to work out a schedule…the folks who liked Top 40 got their days, Jim could pick the music on others. But it wasn’t a matter of fairness or sharing time; the Top 40 songs were a constant battering to Jim, and he soon left that experience.

“C’mon,” people say. “He left a job because he didn’t like the music?” That, I think, is the place where the path of the neuro-typical and the path of the autistic person start to diverge. Most of us would be annoyed, maybe, but we’d accommodate–we’d wear our ear buds, negotiate a different spot in which to work, or find a compromise all could live with.

That compromise, I have come to understand, is not a possibility for folks on the spectrum. The sensory input is not an annoyance. It’s insurmountable.

An example: A friend of a friend has an adult son on the spectrum who is a hard worker, reasonably social, and very bright. He has held a number of fast food jobs and lost them all. It’s not because he is late, unreliable, or inappropriate. It’s because he cannot–and really cannot, although it seems like ‘will not’–wear the uniforms. This young man doesn’t like the polyester texture or the tags. He says he can’t breathe in those clothes. He says he can’t wear clothes with writing on them. His bosses say, over and over, “Sorry, son. You’re fired.”

Sensory rawness marks these adults as different. Their social reactions can also be very unique and difficult to understand. I’ve found that many people on the spectrum are almost completely literal. If they’ve been told something is true, for example, they believe it should be true in all circumstances.

So a lovely young autistic woman, a former student of mine at a different college, seemed to morph into a virago when told she was not going to be allowed to take a make-up test in the testing center. It was 4:45 and the center closed at 5:00; there wasn’t time to take the test.

But Angie (not her real name, of course) had been told, by her instructor, that she could take the test at the testing center. And so, to Angie, the person who said that wasn’t true was a liar, and she told the poor assistant who had to share the bad news that, loudly and unceasingly. The center staff called for help.

Jim has really worked hard at learning to read social cues, and he does a great job, but he will still ask for help in unnerving situations. Looking in at his world, I sometimes think it must be like living in a foreign country, one where he can learn the customs if he works really, really hard. He never completely understands the random-seeming reasons behind the customs, though, and every once in a while, one practice might just loom as being totally intolerable.

But, like anything, there are flip sides. The literalness that makes some situations difficult for Jim and for others on the spectrum also makes some situations very, very simple. Jim believes, for instance, that all people have a right to respect, and he is always a champion for the underdog. He doesn’t care if you have a label of ‘PhD’ or of ‘DD’; if you’re his friend, you’re his friend. He is impressed by your spirit and not by your title. He is moved by photos he sees in the back pages of magazines of babies born with cleft palates ; he is incensed by injustice to marginalized folks–the mentally ill, the developmentally disadvantaged, gay people who can’t get married, the elderly abused in institutions we should be able to trust. Like competition, injustice is not a language Jim speaks.

Jim has arrived at his point in life by a lot of hard work, a lot of frustration, a lot of luck. He earned his high school degree on a normal schedule. Since high school, he’s completed over a year of college–he’ll return to that pursuit this summer–, and he’s taken part in several different job training programs.

He wants, very strongly, to live independently, and he’s working toward that. At the same time, that thought is pretty scary, and we need to help him take the steps to becoming secure in his ability to navigate independent, adult life.

This might sound like the writing of a wise and competent mother, but the truth is, the mistakes I’ve made are enough to fuel Jim’s conversations with his therapist for a lifetime, at least. Here we are, imperfect and impatient, in this unmapped territory, trying to help our intelligent, funny, vulnerable, loving son find a very good route to where he wants to be.

There’s not a route that’s well-traveled enough, though, for Jim to see the landmarks. In many ways, he’s in a rain forest with a machete, hacking away, not knowing what’s behind today’s particular clump of overgrown vegetation. I have no doubt, though, that he’ll create a path; Jim perseveres long after I would have given up. That, I think, is another gift autism has given him.

Jim is just one gifted, challenged, creative, sometimes difficult, sometimes amazing, always cherished, person with autism. Mark and I sit in support group meetings and are amazed by the commonalities we have with other parents and by the rich and distinct differences our offspring display. We hope that through our meetings, our discussions, our support of Jim as he increasingly takes ownership of his path, we can help, in a small but meaningful way, to ease the path that other young autistic young people will have to take as they reach that adult threshold. We hope there will be precedents or models they can learn from.

But we know that each of those young adults will also need, in so many ways, to walk their own walks. There’s not a one-size- fits-all answer–although there are things we can and must do to make life more livable for adults on the autism spectrum. As the understanding of this diagnosis grows, and its scope is defined (the CDC recently released a study estimating one in 68 persons is on the autism spectrum), we need to create opportunities for these individuals to use their gifts to help make society richer.

If you’ve met one person with autism, you’ve met one person with autism. And you’ve also encountered someone who can change your world view. This month, we celebrate that.