Beautiful, Terrifying

Here are two situations I’ve encountered recently:

At the music school again. I’m in the waiting area, with my laptop and four other adults, while Martin takes his piano lesson. A woman enters, accompanied by a teenager and a younger boy, maybe eight or nine years old. All three look alike; I assume these are a mother and her two sons. The mother approaches the front desk with questions about lessons and fees. As she talks to an employee, for a while, she turns her back to everyone else.

Immediately I see that her younger son is on the spectrum. He’s holding a small electronic device, a video game, close to his face as he paces urgent, long-stride circles, humming. He plops to the ground and focuses intensely on the video game, tapping the screen with his thumbs. He rises and recommences circling.

The teenage son, meanwhile, settles into a sofa and starts studying some sheet music. He appears comfortable with the situation, and not embarrassed by his brother. In fact, the teenager looks as if he could be a special-education professional. Magically, his eyes are on both his sheet music and his ASD brother. When the younger boy breaks his circle pattern and bolts down a hallway, the teenager follows him. They return seconds later, the teenager guiding and redirecting to the video game. When the ASD boy intensifies his pacing, then begins to disrupt objects in a sensory-seeking manner, the teenager calmly collects him in his arms and brings him to the sofa, cradling him in all-over pressure. Not once does the mother even have to divert her attention from the employee with whom she’s talking—although she, like any special-needs mom, must sense all that’s transpiring behind her.

After five minutes, the mom settles her business with the front desk, and the teenager’s music lesson is ready to begin. Before he heads off with the instructor, the teenager makes eye contact with his mother, so she knows he’s passing his younger brother’s safety to her.

It’s like watching a master-class in family ASD management.

In Texas, at an indoor playground. It’s Easter Sunday afternoon and Martin is antsy, so my brothers and I bring him to an indoor playground. Martin removes his shoes and dashes into the climbing structure, a sort of gigantic, netted jungle gym. I sit with my brothers in an ample lounge surrounded on all sides by the jungle gym.

Two men enter. They look cool. Super-cool. Sunglasses. Ample, sculpted chests, pecs, and biceps, visible under fitted polo shirts. Nice jeans and shoes. Okay, I’ll say it. They’re handsome. They have four or five children with them. I’m not really sure how many, because my attention goes directly to the one with autism. From his face, I’d say he’s ten or eleven years old, but he’s almost adult-sized. He’s tall and, like many ASD kids, with their gut problems and food issues, he’s overweight. He’s not looking at anyone, or speaking. The other children store their sneakers in the plastic cabinets set up for that purpose. The ASD boy tugs off his sneakers and leaves them on the floor. The kids disappear into the climbing structure.

The taller of the two men, in a white shirt, seems to be the one in charge of the ASD boy. I guess that he’s the boy’s dad. Almost without a pause he scoops the abandoned sneakers and tucks them in a plastic cabinet. The two men take adjacent chairs and begin talking. They seem like good friends. I’m too far away to hear what they’re discussing.

I imagine it’s the New York Rangers, because really cool, handsome men everywhere, even in Texas, like to talk about the New York Rangers.

After some time the ASD boy emerges from the jungle gym. He seems confused until he spots the two men, then runs to them and climbs onto his dad’s lap. The boy is so big that he looks absurd perched on a lap, like a teenager or even a small man curling his body onto another’s. His dad, Mr. Super-Cool, Mr. If-We-Were-in-Any-Other-Setting-I-Would-Take-Him-for-a-Childless-Playboy, continues talking to his friend while wrapping one arm around his son and using the other hand to rub the boy’s scalp. He betrays no hint of feeling awkward about the 150 pounds of kid smooshing his quads. He continues rubbing his son’s head until the boy springs to his feet and scampers back to the jungle gym.

The super-cool guys and their charges leave before we do. (My brothers and I, in tandem, are lazy caregivers. While Martin plays, for more than two hours, we’re sipping coffee and teasing each other, destitute of other ideas for filling a holiday afternoon.) As the other kids get themselves ready, Mr. Super-Cool puts shoes on his son’s feet and ties them. They’re nearer us now, and I hear him ask, “You okay, buddy?” Then, probably because his son is not verbal, he answers for the boy: “You’re okay.” They walk out holding hands.

There is a beauty to scenes like this, to a teenage brother forced to mature into vigilance, to a dude with nothing but tenderness for the child who requires more attention than the rest combined. I want to wave my arms and shout, “Hey, us, too! Autism’s got us, too! I’m proud to be like you!” I want to be counted with those who rise so brilliantly to the challenges they face.

Yet I also regret these scenes. Autism is a monster of our own making. Its incidence is rising from some combination (I don’t know which; who does?) of the dangers we humans have unleashed. Chemical concoctions disguised as food. GMO’s. Antibiotics, overused. Electromagnetic fields. Mercury and other heavy metals. Radio waves. Injected toxins. Pollutants. Pesticides. Sure, I admire the caregivers who meet autism head-on. They’re making positive choices. Where is the choice for the children with autism, who need calming, who crave sensory stimulation, who cannot sleep, cannot relate, cannot adapt, cannot ensure their own safety?

And where will they be when the brave and patient caregivers are no longer available?

We’ve got to stop this.

Martin, in the indoor playground, somewhere.

Martin, in the indoor playground, somewhere.

Without Martin

Readers, it’s been a week. For the first time since I started this blog, I let more than three days pass without a post.

I apologize.

I blame Christmas preparations—I didn’t accomplish even half a standard Christmas, but that’s a subject for a later post—, forging through dense briefing schedules in two separate litigations, sitting up at night as Martin’s had trouble sleeping, and preparing for the trip.

Yes! The trip! This is the big one, Adrian’s sixth-anniversary gift to me, and eight days without my Martin. My mother is staying in our apartment with Martin. We’ve gone backwards and forwards over his daily supplementation schedule, dietary restrictions, wants, and needs. I’ve filled the freezer with pre-prepared meals and organic meats. With the approval of Martin’s HANDLE therapist, he gets these eight days off from HANDLE exercises. And all week Samara’s been helping Martin learn this mantra: “Mommy and Daddy are coming back. Mommy and Daddy always come back.” As a result, he was okay when we left this afternoon. I said, “Daddy and I are going on an airplane and will come back next week. You’re staying with Grandma.” Martin replied, “Mommy is coming back another day. Mommy always comes back.”

I’m worried, of course. Not that my mother won’t accomplish Martin’s diet and supplements to the T. Not that my mother and Samara and even my visiting brother won’t be doting on him. I’m worried that he will be distressed without us, and more especially, that we could lose recovery momentum. These past few weeks have brought so much progress. I’ll have a hard time forgiving myself if our absence interrupts that, or prompts a set-back.

(“I’m not worried about permanent damage,” Adrian assured me yesterday. “I’m really not.”)

It didn’t help that, just before Adrian and I headed out, Martin seemed, as my mother put it, “a little spacey today.”

Nevertheless, I made it out the door, teary-eyed. I’m typing this on the airplane. We’re bound for Israel, landing in Tel Aviv and continuing by car to Eilat, then to Jerusalem, sandwiching a day trip to Petra in Jordan. This was all supposed to be a surprise, but some weeks ago I forced Adrian to reveal the itinerary. Not knowing our destination was just shoveling anxiety onto my already gigantic pile of hesitation about leaving Martin. It’s only the second time, since we radicalized his treatment, that I’ve been away more than a night. The first was a four-day trip to Germany for a family emergency, during which Samara moved into the apartment and helped Adrian manage the routine.

So there you have it. This blogger is on her way to the Holy Land and will have a week to contemplate the course we’re on with Martin. I’m determined to post daily, both to take advantage of the time away and to make amends for the recent posting dearth.

An eight-day travel journey, meant as a break from a years-long recovery journey.

Here we go.