J. and I have a new ritual in our rare times away. We've been going to museums; partly to see the art, and partly to have a peaceful place to talk. There's something about museums that calms us both and shakes loose a bit of perspective.
Several weeks ago, we took a walk among the cool granite walls of the grandly named California Palace of the Legion of Honor, and had a chance to see a fragment of the Dead Sea Scrolls on loan from Israel. It sat, just a tiny fragment, in a dim recess, illuminated by the slightest hint of light. It was magical, and a little spooky, to see something so ancient and yet so unprepossessing, and know that it was written nearly 2,000 years ago. I kept thinking that, as Bogie so memorably said in Casablanca, "the problems of three little people don't amount to a hill of beans in this crazy world."
I snuck away briefly today to go to an open studio on my own and visit a painter I admire (more on that in a future post). But some of the most memorable art of the day was on the outside of the building--a mural that I couldn't resist photographing.
Tomorrow we're planning to take Isaac out and see the Gilbert & George exhibit at the de Young.
It was an edgy day, brightened by the fact that Isaac read his first story: "Once upon a time, there was a boy, and he was very sleepy so he went to bed. The End." Now, as my eyes droop shut, I think I'll do the same.
"There is nothing either good or bad, but thinking makes it so."
Hamlet, Act II, Scene II
Back in the early days following Isaac's diagnosis, J. and I spent a lot of time wondering what exactly we were to do with this new information about our son. Should we accept that it would always be hard for him to...? That he might not...? That he would never...? Should we accept anything, in fact? Or should we just proceed with our lives, getting him all the therapies he needs, but in an emotional state of suspended judgment?
And then there was the creeping dread that we, who so love language, and books and reading--who can't stop talking, for heaven's sake--would be facing a future with a child who couldn't communicate with us. It seemed sort of Greekly ironic, a bad cosmic joke.
It turns out we were very, very wrong.
The truth is, Isaac loves language. Loves communication. Loves rhymes and silly songs and word substitutions and the surprises that words make when the sneak up on you from behind.
From his earliest days, he'd laugh when he heard a new word, and later, laugh and repeat it--endlessly. This last weekend, as we horsed around on the bedroom floor, I asked him jokingly, "Isaac, do you want some proprioceptive input?" "Yes!" he crowed, giggling madly. "Popoceptive...input!"
Tonight, as J. shepherded our tired boy home from a luxurious dinner of chicken and fries, Isaac insisted that Daddy pick him up. "Isaac, you're very heavy. You're the biggest boy I've ever carried," J. said, scooping him up. "You're not a small boy," Isaac answered, smiling. "You're not a teeny-tiny boy. You're a double boy!"
Double boy. Okay, forgetting the pronoun confusion for a second, consider this: from a child who is supposed to be unable to understand anything but the most literal language, that's a pretty clever image.
Said more plainly: thems are fightin' words.
P.S. Today is believed to be the birthday of William Shakespeare, who is responsible for so many of the phrases--even words--we utter every day.
On behalf of my son, born a mere 439 years after you, Happy Birthday, Will.
...but we were all hecka edgy this morning, most notably Isaac, who informed J. that he was worried about going to his new school today. Worried.
Of course J. and I were delighted, because our lives are a grandly perverse science experiment in which we are both the lab rats and the scientists, endlessly jotting down our observations on a legal pad, chewing thoughtfully on the pencil eraser.
"Worried. Have you heard that before?"
"Nope. Have you?"
"Nope. It's great, isn't it?"
And isn't it bizarre to think so.
After a few false starts, we finally managed to get Isaac dressed, with the help of many fulsome promises that he would have at least one elevator ride before we went to the new school open house. He was pretty reluctant, but a few rides and two cookies later, we were primed and ready for action.
He held J.'s hand as we walked from the car to the schoolyard (my heart tight in my chest, trying not to feel the weight of such a rite of passage, just to go with it, let it happen). He sidled through the gate and made a beeline for a clutch of kids playing with bubbles. He stayed there for a time, crouched down, happily blowing bubbles with the other kids, then edged over to the food table, where he availed himself of a rather large doughnut before hitting the climbing structure.
My friends, it was awesome.
J. and I introduced ourselves to some of the parents, the principal and a couple of the kindergarten teachers, one of whom was kind enough to give Isaac and us a guided tour of the classrooms. He wandered into each in turn, curiously examining the art materials, toys and books.
"Today's not a play day, sweetie, just a looking day. So no touching the toys."
He was fine with it.
One of the classrooms had a centrally-located "word wall" where they had organized a number of simple three-to five-letter words, arranged by letter of the alphabet. Isaac wandered over and traced his fingers along the words, spelling several of them aloud as he went.
I admit, I don't want to be one of those parents who ostentatiously parades her child's accomplishments to anyone who will listen (yes I realize I am a hypocrite--here I am blogging about it after all) but...I was so damned proud of him. For spelling, sure, but mostly for working through his anxiety. For getting into the action with the other kids. For giving the whole thing a try.
He had a really good time. When we left, he said goodbye to the teacher who had given us the tour, and waved bye-bye to the school.
I burst into tears in the car on the way back.
I'm not a superstitious person, usually, and I know we're in for a big heap of change in the next few months, but I'm going to take this as a good sign.
This morning, our little family is going to a "playdate/orientation" at Isaac's future Kindergarten. It's just the sort of casual, "just drop by and play" affair that usually sends us into panic mode. Will he flee? Will he run the perimeter? And, reading the tea leaves in every situation:
What does it mean for the future of humanity?
We've already started the beginnings of a social story to prepare him (and us) for Kinder. We've heard it's a warm, involved community. It even has a Yahoo group!
But it's new. And new is, well, challenging for us.
A spectacular day today: sunny, warm, breezy, so not your usual San Francisco April day. Isaac had been edgy all weekend, and since we didn't want to get kicked out of any more hotels, we thought we'd rely on our three most powerful tools in the global war on meltdown: protein, humor and exercise.
We took a walk, during which Isaac chattered happily about anything and everything that caught his attention: buses (of course), people, dogs, porta-potties (all, thankfully, padlocked). As the map on Dora the Explorer would say, "Say it with me: Spontaneous. Meaningful. Language."
We crossed into the Presidio and took the footpath, making our way over rocks, branches, and beds of pungent eucalyptus. As we rounded the last curve, the Palace of Fine Arts came into view. Suddenly, Isaac announced he wanted to go to the Exploratorium--a place with mixed memories for us.
First, imagine an environment that is completely devoted to engaging the senses. Then mentally fill it with tourists. Then go back to the sensory part. Would it surprise you if I told you we had to carry Isaac out bodily the first time we went because he just could not stop stimming on a series of spinning disks? Would it further surprise you that we have a family membership? Yes, we are masochists. But over time, as Isaac has matured, he's become able to sample more of what the museum has to offer, and to stay regulated (mostly) and have a good time.
That's not to say it's a perfect experience. The transition from exhibit to exhibit can be tough. He's not the suavest turn-taker. The elevator is a highlight, for no other reason than that it's...an elevator. After a time, we managed a quick lunch and a successful trip to the bathroom, where we met another one of our people. She totally twigged when she saw him with his hands over his ears.
I love those complicitous smiles: we're everywhere, aren't we?
The highlight? the big bubble exhibit. Check out that expression as he huffs and puffs and blows the house down.
An up-and-down week. On the upside, we had Isaac's IEP (did you ever think you'd hear me say that?!?) The truth is, he's growing in so many areas: interpersonally, communicatively, intellectually. He can sight-read simple words and sound out longer phonetic ones. He's big on kissing lately, loves stories, and is a world-class ham: he knows when he's said something funny, to the extent that he repeats it until the last laugh is squeezed out of the room. But the "stereotypical" behavior continues: we continue to see flapping, perseveration (around buses and elevators, most particularly), and a lot of anxiety about noises.
But oh the moods on that kid. I see him starting to try out ways to cope: today, for example, my Dad was here and so we went to the Farmer's Market while J. took a much-deserved break. Isaac was a bit edgy, wanting to ride the streetcar, so I tried out my new gambit. "Okay, pal," I said, "Here's the plan. First we go to the Farmer's Market, then we get you some bread, then we buy some food, then we go home, and you can ride buses with Daddy."
He considered it for a while, repeated it to himself a few times, and was fine. Absolutely fine. It seems that I got the better part of the deal today, since J. and later Beata weren't so lucky. But what makes me optimistic is that I see him trying to find a way to cope with unexpected or difficult situations. As they said in his IEP, his tolerance for frustration is increasing. Now if I can keep mine from eroding, we'll be in business.
Sort of as a PS, you have to read this post by MOM-NOS. To me, it's a sign that Spring is on its way.
On a May evening in a Paris theater some years ago, a group of dancers and musicians took the stage and began their performance. The effect was so unexpected—even discordant—that it provoked a riot among the audience. People shouted. Fights broke out in the aisles.
It wasn’t Elvis. It wasn’t even the Sex Pistols. It was Paris 1913, the first public performance of Igor Stravinsky’s “The Rite of Spring.”
How is it possible that a simple piece of theater could evoke such outrage? Over the years, sociologists, psychologists, historians and musicologists have proffered various theories about the suggestive nature of the dance, and the discordant tones of the score, but no one will ever know precisely what sent an otherwise civilized audience into total chaos.
That was nearly 100 years ago. Scandalous as it was at the time, Stravinsky’s “Rite” ultimately taught a whole generation to hear differently. And it is widely credited with making modern music possible.
On this Autism Awareness Day, I’d like to honor Igor Stravinsky, because I believe his “Rite” has a lot to teach us about where we are today with autism.
Autism is many things to many people, but it is essentially a difference of perception—sometimes mild, sometimes severe, with many thousands of permutations. And, like the audience in the theater that night, we are at a fundamental moment: will we cover our ears and flee, or will we try, in whatever way we can, to hear its music?
By asking those with autism to live as we do in our world, we’re asking them to endure a daily cacophony that sends their senses into overload. Is that even the right thing to do? Can we help them find a way through? Can we look past their coping behaviors to understand what they are trying to communicate?
Daily, even hourly, we are chipping away at these questions. And it's heavy work.
There are many, many people in the trenches today who are committed to listening to and reaching people with autism in whatever way they can: through music, art, drama, mathematics, language, pictures—even textures, smells, taste, touch and movement. Here are just a few:
Dr. Stanley Greenspan, for example, whose Floortime approach is so innately respectful of developmental, individual and learning styles;
Professor Simon Baron-Cohen, whose CHAT diagnostic tool is simplifying diagnosis for so many families, and who communicates such a sense of respect for the individuality of those with autism;
Elaine Hall of The Miracle Project in Los Angeles, who used dramatic play to reach her son Neal, and who is sharing what she’s learned with other families, most visibly in the film "Autism: The Musical."
And sooner or later, we end up talking about causation, and the false dichotomy of acceptance versus cure, mind versus body and medical versus educational interventions. And then voices get raised, and lines drawn, and it all goes to hell.
Please. We have to stop fighting each other. Autism is complicated and personal. We have to let our differences coexist.
We have to get past all of this.
People with autism demand and deserve acceptance and openness, and, like those of us who are less than one standard deviation from the hypothetical norm, they need services and insurance and educational options to help them address any and all challenges they face in daily life.
For adults who can advocate for themselves, it comes down to personal choice. For those who can’t, or for children who are too young to do so, we parents and loved ones must be there until they are able to do it for themselves. And we have to do it with respect and with love and with utter fearlessness.
Helping people does not imply a lack of respect. Respect and acceptance doesn’t diminish the challenges that many people with autism face. Acknowledging the challenges our children has nothing to do with how much we love them. Yes, autism can bring confusion and pain, but it also can bring us unexpected gifts.
So on this World Autism Awareness Day, I have a few words for those of you who are making your impact in whatever way:
CNN: You showed true leadership today, on a complex and prickly issue, and I was incredibly moved to see the personal commitment behind your coverage. Special thanks to Jim Boulden, John Dear, Soledad O’Brien and your families for breaking the fourth wall and permitting yourselves to be part of this story. Your perspective deepened the coverage immeasurably.
Insurance companies: you can’t hide from this issue. It is not going away any time soon. Pay now, or pay more—a lot more—later. And quit “losing” our freaking paperwork.
Lorri Unumb: you’re amazing. Your work on Ryan’s law is a critical step toward helping an entire generation of children get the insurance coverage they need.
Politicians: Show real leadership. Pressure the insurance companies and fund education, research, promising therapies. Do not, I repeat, do not, break your campaign promises on this issue. A generation depends on you.
Researchers: Thank you for everything you’re doing to get to the heart of autism and put all this divisiveness about causation to rest.
Therapists, teachers and doctors: Thank you for everything you do for our children. Please don’t discount our concerns and give us a false and temporary sense of security. Early intervention is key, so give us the referral if we’re worried. And don’t forget to look at the whole family—not just the child. Autism affects us all.
Parents: Don’t ever lose hope. Find your people—we’re here and we understand. You can find us on blogs and Internet communities and in the therapist’s offices and at the playground and in line at the checkout stand. And remember—this is a marathon—not a sprint, so find some time, however you do it, to take care of yourselves.
People with autism, our children and families and friends: Even though we screw up a lot, we’re trying, just like you are. And even if we don’t always understand you, we always, always, always love and respect you.
If you've read this far, well, thanks. And if you have something you’d like to say about autism today, please share it in the comments.