autism takes a holiday

I'm back.

I've been home from Paris for a week or so, flat out exhausted and rife with thoughts, thoughts and more thoughts about my trip, my family, and well, life at 42.

I can tell you that my trip was unbelievable - every day an adventure - theatre and sites, arts, and fantastic, fine food and champagne. It was the hedonistic trip of a lifetime. Every day was centered on my pleasure, my delight, and my senses. Upon awakening, I took a long bubble bath in my granite bathroom with gabled roof, cheerily waving to the neighbors across the street. My Gay and I set out for the day, fortified with rich espresso and fruit, and perhaps a chewy, buttery croissant if we felt like it. We eschewed maps, and opted to blend in like natives, which, blissfully, we were able to accomplish more often than not.

I missed my children terribly. I will let you in on one secret though:

It was nice to be me again.

I thought this over and over, as we laughed and talked nonstop, rested and read, walked and sang.

I didn't have the pressure of 100 students, or a the neediness of a 5 year old...or a daughter with autism.

Yes. I'm saying it.

I realized how hard life has been for the last several years.

I realized, as I had the time to hear myself, how much of my day is spent thinking ahead, planning, worrying, preparing. I advocate, fight, and muscle my way through most days.

I'm not pitying myself, or making a political statement. I'm saying my truth, and that is that autism is hard work. It's hard to predict the minutiae of life - how a certain sound or light, or even clothing tag can set your child off. It's endless worry. It's constant engagement. It's a cheery, animated voice and face when you are too tired to function, yet do it anyway so that you can properly model and elicit response. It's repeating yourself. It's working out in the middle of the night, fending off anger and anxiety so that you don't take it out on the kids. It's enduring judgment and stupid comments and quizzical looks. It's being a rock in school meetings, when all you really want to do is be held and rocked like a baby.

It is fucking hard work.

I spoke to Miss M from the Louvre, on a red Blackberry, and was stunned by how conversant and adult she was.

When I hung up, I had many thoughts.

She sounded better than I'd remembered.

I thought about how hard we'd all worked to get her there.

I thought about the last nine years, and how, for 7 of those years, I have been completely, obsessively concerned with my daughter's progress and well-being.

I took a breath and we walked along the Seine.

In spite of the Post-Traumatic Stress, as my friend Michelle O'Neil reminds me, I still function. I still laugh. I still drink too much champagne. I can still appreciate a sunset or piece of artwork. I can still discuss theatre with the best of them, and I surely, surely, can outperform most young ingenues half my age.

I'm still here. I'm still standing.

I came home to find that Miss M won an award for Creative Writing, that she now has a real-honest-to-goodness-boyfriend (hugging and whispering and wanting more and more playdates!) and that Roxie would like to pierce her ears and join the SF Ballet.

I've done okay. My plants still flourish in my absence. The roots are strong and hearty.

I have adjusted in the past week, missing cafe society and Galuoise cigarettes and books, and, well, me. In its place is a different permutation of me - just as valuable, just as dynamic, but with a richer context and meaning.

Remember E.T. and Miss M's awakening to empathy? She was listening to Phantom of the Opera in the car the other day (a gift from Her Majesty's Theatre in London) and she sang along, perfectly, in her sweet, strong soprano. She came to this song:

No more talk
of darkness,
Forget these
wide-eyed fears.
I'm here,
nothing can harm you -
my words will
warm and calm you.
Let me be
your freedom,
let daylight
dry -your tears.
I'm here,
with you, beside you,
to guard you
and to guide you . . .

Miss M suddenly erupted into tears. She sang through, wiping tears away as she finished the song.

Her sister and I glanced at each other, and I turned off the stereo. We drove in silence awhile.

Roxie broke the silence. "Why are you crying?" her eyes wide and incredulous.

Miss M stammered a bit. "It's well, I --- it's so touching. They love each other, and, well, they feel - they feel - they -"

She didn't have the words. For once.

She had the feeling.

She understood the feelings.

Perhaps I haven't finished the life I thought I'd have.

But I've done a damned good job with the one I have.