I've been away on a business trip the past couple of days; amazing how disconnected I feel after even such a short time. Last night, Jesse handed Isaac the phone and whispered, "Isaac, say hi to Mommy in Boston." "Hi Mommy in Boston," he sang out happily. I tried to suppress the question of whether that was humorous or echolalic--unsuccessfully, as you can see. I could hear his muffled breath through the phone.
Odd, being here. I've spent the entire time in conference rooms, taxicabs and my hotel room, which, after an $11 bowl of oatmeal this morning (good, but honestly) I gazed down at the graves of Samuel Adams and Paul Revere.
Somehow, I don't know how to collect my thoughts today. I've been wanting to write a follow-up to the whole Ransom Notes campaign, but I think I'm still brooding about it. One thing I'll say, though: this experience has been extremely valuable (just not in the way the creators intended) because it has illuminated the incredible complexity of what we're getting into when we talk about disability: who's talking, who's being talked about, who has the microphone, who is the subject, and, most importantly, the fine, shfting line between disability and difference, personality and pathology.
I don't mean to overdramatize here, but I do think we're at the beginning of something critically important. To me, the most telling sign is that this campaign has become a rallying point for many people with autism and a way to get their voices heard; for that I am profoundly grateful.
Back from tantrumland, at least for the moment. Was it Wordsworth who said that poetry is "emotion recollected in tranquillity"? If so, our lives are pure poetry these days. In my more disoriented moments, I find this thought mildly reassuring, even though I doubt that's what old Will had in mind as he was penning Tintern Abbey during that lazy summer back in 1798.
On the train to the city yesterday (grandparents generously having offered to watch the boy), J. and I did some recollecting ourselves, some talking each other off the ledge, some vague rationalizing, but we mostly just gazed out the window and read, save for the occasional "He did great this morning. Did you see how he..." And then our voices would trail off, and we'd read a few more pages as the landscape flew by.
Many blocks, a triple-marked-down jacket (ah New York summer sales) and a rushed and mediocre pedicure later, I am feeling a little more myself. Is it that sometimes I need to hit the pause button? Is it the exertion of managing my feelings through every meal, moment, transition, wondering what's around the next corner? Mostly Isaac has been terrific here--affectionate toward his grandparents, connected and happy--but the twice-yearly visits always feel momentous in some way, as if we need to demonstrate, in five short days, the arc of his progress and the gorgeous 45 degree trajectory of his future...so everyone else will be happy? So they'll stop worrying? So I can relax and feel like a good mommy?
No one is asking me to feel this way. It's my own doing, and it feels somehow as traitorious as it is pointless and exhausting. He is not a science experiment, after all, just my own sweet boy, who is who he is, who learns and grows and changes with each passing season. So I need to, as a certain colleague of mine would say, put on my big-girl pants and deal. Here it is for your reading pleasure--me dealing.
Tomorrow we get on a plane and go home. I'll share some of my newfound travel tips for those of you contemplating a plane ride anytime soon (#1: If you have a sound-sensitive and newly potty-trained child who has never been in an airplane bathroom, you might consider a pull-up for the ride. We did okay after a four-hour nail-biter when I finally convinced him to go with the door open and his hands over his ears. I'm sure the whole cabin appreciated that memorable sight).
But, back to the moment. Dinner, which came from the farmer's market at the Rockefeller Preserve, is done, and the dishes are washed and put away. Nonna is upstairs, Grandpa is on the couch, and Isaac is sitting on the floor with J, who is trying to tempt him with a variety of delicacies--blueberries, carrots, strawberries--to go with the ubiquitous crackers. Then they get silly, J. suggesting a range of other options for the meal: crackers with hummus, with hair, with cars, with blocks, and Isaac starts to giggle. It is our own sort of tranquillity, made a little melancholy by the fact that we return home tomorrow. And so we'll see what home, and daily life, and a new school year, will bring.
*** While with an eye made quiet by the power
Of harmony, and the deep power of joy,
We see into the life of things.
- William Wordsworth, "Composed A Few Miles Above Tintern Abbey, On Revisiting The Banks Of The Wye During A Tour. July 13, 1798.
We made the plans on the spur of the moment, after much deliberation, agonizing and negotiation: we'd take a vacation. Not a family visit, not a couple of unscheduled days at home, not a tacked-onto-a-business-trip weekend: a real vacation. With sand, sun, just us. We'd never done it before. We might never do it again. But we had to try.
The obvious questions: will he eat? Sleep? Freak out in a strange place? Refuse to go anywhere? And, just as importantly: will we? Some of my friends said we were brave, in tones that made me think that "brave" was a compassionate way of saying "totally out of your minds." And I resolved not to overthink it, the way I always do. (I was only partially successful. Can you tell?)
But finally we went, and in the Maui airport, as we trekked by dozens of sunburned families, I thought: "Wow. People really do this."
The first night was tough: Isaac completely lost it when he realized that he was actually going to have to sleep in this strange new place, and we all seriously reconsidered whether we'd made a huge mistake, but eventually he (and we) settled, and we awoke the next day to a spectacular view.
We spent four beautiful days on Maui. We went to the Maui Ocean Center, the inside of which was a little hard for Isaac--lots of kids, sound, lights--and let him be the boss as to what we did and how long we stayed. We took him to Iao Valley State Park, where after an initial period of anxiety, he finally climbed the steps to the lookout point (check out the excellent windblown Elvis hair). And we spent a lot of time in the pool and the ocean. High point: Isaac spotting Jesse from the steps into the pool, and happily calling out: "Hi Daddy! I'm going down the steps!" Low point: Isaac melting down at full volume in a tiny chocolate shop in Paia.
And yes, he (mostly) slept and (sort of) ate, and there was at least one meltdown per day, and it all went too fast--every bit of it.
When we left yesterday, Isaac said goodbye to our room, which he referred to throughout the trip by its number ("Bye 496!"), the fountain at the front, the tiki torches, the white rental car, the pool, the ocean. He slept in my lap on the plane ride back. It was awesome. It was a gift.