My 1 in 88

Jacob, March 2012

Today is World Autism Awareness Day and April is Autism Awareness Month. A big deal in the autism parenting community.

I am, as is usual these days, a busier than busy bee, slammed to the wall with things that MUST BE DONE. And a long school vacation is looming later this week.

But I could not let today pass silently, without notice on my blog. It's just too important.

Last year I wrote a pretty cool post about my son, Jacob: Every day is Autism Awareness Day 'round these parts and everything I said in there still stands.

Jake is now one year older, evolved and evolving; his conversational skills and artistic talents just bursting forth, more and more amazingly every day.

And he is still, and will likely always be, on the autism spectrum. A unique boy with a unique brain; a singular perspective on the world, which, thankfully, usually delights him.

I love Jacob with every fiber of my being.

But I hate that he struggles so mightily with language, with expressing himself, and sometimes with just simply understanding what people are saying to him. I see the efforts in his eyes; sometimes I swear I can watch his brain attempting to process. And then I see the pain when it just doesn't compute, and he switches off.

I hate that his relationship with his twin brother, Ethan, is so difficult and fractious. I know that this too will evolve, but it has been a thorn in my side for so long now, it is hard to imagine anything other than the state of fraternal siege we live in.

I worry about his future in so many ways. I want him to have the biggest, fullest, happiest, most independent life possible. I want him to always be surrounded by love.

But I know how harsh and cruel the world can be for those who are noticeably different.

And as much as I am alarmed by the statistics that have recently come out, how autism is on the rise as a worldwide phenomenon and is just increasing and increasing annually with little end in sight?

I am also weirdly comforted by knowing that Jacob will not be alone. That he will be be coming of age as an adult into a world increasing filling up with others like him, and the world will HAVE to change - and will actively BE changed by the higher functioning of his brethren - to accommodate Jake and his people.

1 in 88 is a number, a statistic.

But my Jacob is not a number.

He is a person.

A boy.

My boy.

This is the face of autism.

To me.

Jacob, March 2012

Daylight

One short week of school vacation - time off the clock - and the days have gotten noticeably longer at the fringes. When I took Jacob down to wait for his bus this morning, we were watching the early-walking dogs and their people stroll by in daylight, not darkness.

The yellow of the school bus rounding the corner popped against a truly blue sky. And my dour wintry spirits lifted, too, sniffing hopefully towards spring.

*

Tonight, walking home from picking up Ethan at Hebrew School, for the first time in forever it was not completely pitch black night at 6 pm.  Ethan and his friend, our next door neighbor whose mom I “foot-pool” with, were busy talking their 9 year-old-boy-talk of video games interspersed with mock battles that threatened to engulf the sidewalk-sharing passersby.

I just didn’t have the energy to scold, hoped no bodily harm was being done, walked three paces ahead with Jacob on my arm, ever chivalrous.

Jake and I had one of our typical conversations the whole way home, he repeating the same three or four questions over and over, never ceasing in his delight at the correct-to-his-mind answers I doggedly offer back. 

And while the topics often skew to the obvious, they also occasionally delight and surprise.

Jake was talking a lot about the earth and the sky tonight, impressed, as was I, by the moon playing peekaboo with us between the tall buildings. It was in between phases, not quite crescent yet shy of half full, and fuzzy about the edges, giving it a soft, somewhat unearthly glow, as if we'd slipped into a Maxfield Parrish painting. 

"Where is the planet, Mom, where is the earth?" Jake asked. And I assured him we were walking upon it, each and every time.

"When you were dead, before you were a baby, did you live in the sky, Mommy?"

OK, didn't expect THAT one.

A complex and somewhat... unusual cosmological concept going on here. A moment's reflection upon his current Japanimation obsession, though, solved the mystery of its origin. 

In the DragonBall-Z-Kai universe, people are always dying and being brought back to life, and hanging out on a platform in the sky while waiting for that to happen. 

Explaining the improbability of all that to my autistic son was quite beyond my ken tonight, so I just waived my hand in the air and proclaimed it to be a bunch of "made-up TV story nonsense" and not the stuff of real life.

He smiled indulgently, knowing how much more real his beloved Goku and Piccolo are than I will ever know, and, as we were on our block, no more streets to cross, ran the rest of the way home, West toward the fast-fading, last pink echo at the horizon.

I trudged behind, watching the evening's first stars emerge, casting their fuzzy glow about the sky; setting down, one in front of the other, my feet upon this planet, following my boy home.

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Promises, Promises

I hate disappointing my kids.

Ethan is all aggression, calling me a liar when I have to backpedal on an agreement, undo a plan; telling me next time he's going to make me pinkie-swear and if I break THAT promise I then owe him a million trillion dollars. But it's Jake that breaks my heart again and again.

I had promised we'd go to the movies together, just he and I, this past weekend. Two weeks ago we had finally seen the Muppet Movie, and I have been walking around singing the very catchy "Am I a Man or Am I a Muppet?" in my head ever since.

Jake loves movies, lives for movies. But Ethan and I both had been laid low sick on Friday and were recovering slowly over the weekend.

Dan, as nearly always, worked all day Sunday, and I just didn't have it in me. Didn't have what it takes to hustle up a playdate to fob Ethan off on, to get out the door with Jake and Ethan, dropping Ethan off, head down to the movies with Jake then pick Ethan up afterward and hope the timing wasn't off, and oh my god, feed the kids, too and get them to bed early enough for school the next morning.

But Jake, being Jake, just didn't understand, even though I explained and explained and explained. Even though I let him watch hours and hours more TV on Sunday than usual, come 4, 5, 6 pm, come bedtime, he just kept asking "Can we go to the movies, Mom? Are we going to the movies, now, Mom?" in this small plaintive voice.

He didn't have to say "But you'd PROMISED!" the way his blatant, brazen brother would have. The movies are his magic and I had dangled it in front of him then snatched it away.  And because it wasn't Ethan's own disappointment he was able to keep perspective. Too much in fact; was scornful of his brother in the guise of being helpful:

"Jacob, Mom is not feeling well, she can't take you to the movies, you'll go next week.  So stop bugging her. It's just the movies, no big deal. Star Wars 3D doesn't even open for 2 more weeks, anyway."

Ethan was happy as a clam to lounge around all day in PJs with the resident screen police too tired for any real rule enforcement.

But Jacob? My sweet Jacob? "Moovies Mommy, I want to go to the moooooovies."

"Next week, my love, next week, OK?"

Please, gods of autism and head colds, don't let me break my promise.

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SOC Sunday: Nearly Human

Yup, Sunday again. Technically. It still feels like Saturday to me because I haven't gone to sleep yet. Or rather I should say "haven't gone to bed yet." Because that hour spent semi-sitting up, slumped on the sofa with the TV playing to my closed eyelids was sleep. Sorta.

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Well, I am happy to report that rumors of my demise have been greatly exaggerated, and I am, in fact feeling much better. FINALLY. Feeling something like a human being again. SHOCKING.

Not quite human enough, unfortunately, to take the kids sledding, in spite of the inches of snow today. Human enough, however, to have fun tossing snowballs with Ethan on the way to the corner diner where we met his best friend for lunch today,. We scraped fresh snow off the parked cars on the two blocks of our walk and packed it down as best we could.

The snowballs were fluffy, disintegrating as they flew. Which was fine by me as Ethan still has the tendency to make up for accuracy deficits by standing WAY too close when he lobs them.

It was lovely to get out of the house, to snarf down a quick lunch and steal a few minutes of uninterrupted grown-up conversation with my friend, the mother of Ethan;s friend. Sacrificing my iphone to the boys greasy food fingers was so worth it.

And then, Saturday being Saturday, there was basketballl. This week was my turn with Jake, who did not want to leave the cozy confines of home/cat/TV, but I made come out anyway because the wide world must not be ignored.

He kept thinking that every snow-covered car we passed was OUR car, and it distressed him no end that we had not found our car yet, no matter how many times I explained to him that we were, in fact, parked one block away in the OPPOSITE direction of the school he plays basketball in, so would definitely NOT not be seeing our car on our walk there.

But Jake being Jake, he still had to ask about it. Every. parked. car. we. passed. And I also answered the question "What color is our car, Mom?" about 1,000 times on that 10 block walk, too. (It's still green.)

I was worn out by the time we arrived. Getting Jake out of his snowboots and into his sneakers left me wanting to collapse in a puddle. And taking his mittens off reminded him how he had left his other pair at school and nearly set off another crying jag like the one he'd had upon arriving home on Friday. But only nearly. (Thank goodness.)

But still my heart swelled with pride as I heard the coach setting up Jake's new helper this week by telling him: "You'll be paired up with Jacob today, he;s our best shooter." And even though Ethan's games are more exciting and coherent, actually recognizable as "games," there is something so sweet about the special needs division; our kids trying so hard, their one-on-one helpers so kind.

And then afterwards we met up on Broadway with Ethan and Daddy for a snack and slogging home through the snow together. And then, home, the boys even played together for a few minutes -- if you count sitting on each other with the sitee attempting to throw the sitter off to be playing. (And i do, i SO DO!)

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OK, I cheated tonight! Clearly this was longer than 5 minutes - more like 10-15. But it felt to good to feel human enough to want to write, I just couldn't stop. I figure I will be forgiven. (Right, Fadra?)

And now? To bed!
 
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