Monthly Archives: July 2020

And the word is…..

No. I mean what other word applies?
Even ever-tolerant Jeff felt the same.

Language is a magical thing.

On Independence Day, of all days, Will found his word. He’d slept late, which is rare, and with spectacular weather in the forecast, we presented choices to Jeff who was awake. Jeff pressed the Hiking icon on his AAC program – the icon featuring a photo of all four of us smiling from last week’s summit. My heart leapt. Majority rule: we get to go today.

Will didn’t seem averse. He wore his quirky half-smile in our trailhead photo, dust like haze against the noonday sun. Indeed across the first 0.9 mile Will sang and tried to make sure he was near to me. We mounted an overgrown logging road with shaggy green grass in its center, mirroring that COVID haircut I gave him, as the gentle grade got steeper. He quietly took my direction toward the rutted rocky ground where there’d be less ticks, switching between “Who’s Afraid of the Big Bad Wolf” and “I’ve Been Working On The Railroad.”

Yet after a half hour more of the trudge, Will started taking his prescription sunglasses off and squeezing them in a claw-grip. Eyeing me with irritation, he’d wait. Put them back on, Will. A smirk, and then he’d comply. And take them off. Put them on. The dance began. The humidity pasted my shirt to my skin and I wasn’t in the mood.

While Jeff marched ahead at his usual undauntedness, Will paused on a rock so his 5’10” frame towered over me. I waited for about 10 seconds, hoping he’d get the word out. “Will, what do you want?” I said.

“I want……” his ecohlalia kicked in. After a few more seconds, he’d say again “I want……” Finally I interrupted with “Will, do you want to go hiking?”

“No.” It was quiet and clear. Not booming and violent. Not spit out and foamy. Not with clenchy-fingers and tilted head, or a grimace an inch away from my face his way when he’s really steamed. And not with tears. Just one word. Communication. Pure. And a look at me smack in the eye.

It’s amazing what one tiny word can thrill. I felt bad in a way, with 2+ miles left to go, that I couldn’t deliver on the request. But I got a word, instead of behavior! I had to honor the language. I told him I was sorry, explained the reasons, said tomorrow could be his day. Pool and cookout, with Dad’s fire pit and s’mores and laid-back backyard fun. Do you want to swim and cheeseburgers and s’mores tomorrow, Will? I knew the answer, and I hoped it would suffice.

If he’d have known the biblical plague of mosquitoes around the bend as the trail dipped into the cool shade of a col, I’m not sure Will would have trusted me so gently. Nor realized that the more down you go, the more Up you must climb again to get to the top. Nor the supreme indignity of Mom insisting it was time for the bug net else the gnats would chew his ears til they bled. If he were typically developing 26-year old I’d have gotten other choice words I can’t type here.

Yet Will is Will. For all his fiery moments, he can walk himself to a better place. When at last we reached Mt. Parker, a mere 3000-footer in the Montalban range of New Hampshire’s White Mountains with a resplendent view, he was spent. Parched and sweaty, he ate three granola bars and about a cup of dry roasted peanuts – everything in his snack bag plus his 32-ounce Nalgene of water. I could relate, shaking the last grains of salt from my peanut bag into my mouth and downing the electrolyte drink I usually reserve for dire hydration.

At first he was quiet, replenishing. Cross-legged, he and Jeff stayed to themselves atop the granite ledge while Jeff chanted phrases that Paul and I said in sing-song perfect pitch. I like to believe both of them were sipping the view as I held up my phone so my augmented reality (AR) app outlined the silhouette of the peaks around us. We probably bore them silly each week with the parental recitation of peak names, lesser outcroppings, and reminiscences of mountains tamed, and lofty ones beyond us still. Ten feet away two women rested, nicely socially distant, while a couple lie cuddling behind a gnarled juniper bush behind us, laughing.

Then Will got up and smiled. Not a beaming toothy grin, like he’d just spied his favorite brownies. Without saucer-eyes when the van door slides wide to reveal an ocean and sand. Not even the one I captured above. His smile was deeper, quieter, with the wideness of the world I didn’t know within him – that I so desperately wish he could unleash.

I asked him to step to the left for a picture, and as he did he turned to face the grand sweep of the southern Presidentials, mountains we’d won over 10 years ago. He looked back at me with an ease and a calmness he rarely gets anywhere else but here, where rock meets sky.

In the valley of the unsaid, there is always so much more to explore – caves of wonder, hidden ice in July, or maybe a lurking bear. Does he like hiking? Does he like me? Does he want to keep living at home or with peers his age? What does he want to do with his time and days? Is he happy?

A mother’s heart has to ask such things, and every once in a while, a word suffices for an approximation of an answer. Within the hour Will used his No again, after repeated bug net removals, and after the last straw, his chewing the net, most disgustingly. This time I could honor the word. I prayed for the best as I spritzed his ears and forehead with bug spray while defending my own against the pestilence as the afternoon air grew heavier. Later he turned to me with another simple word – “Car.” I assured him we were on the way home, explaining that most times, except for canyons, you climb up, so then when you’re walking down, it’s back to the car. Will returned to his inner song, then me singing one verse and Will completing it, as Jeff joined too, his treble a higher counterpoint to Will’s deeper baritone. We made a game of it, inventing songs to the make-believe bear we were scaring away. Far better than pepper spray.

We segued to what we usually do – offering two dinner choices at a time, then flip-flopping them so echolalia didn’t make them choose only the last one. Talk about tomorrow’s overdue chores, the next bigger peak to climb. Words between parents, the chatter of reentry from living in your light at some happy summit, to carrying it back inside you, and hoping it could last. The brook to the right babbled its own word, a long lush variant of Yessssssssss, rolling and free, as the peace of the woods hugged us and sent us home.

It’s Amazing

Jeff’s echolalia epitomizes all that’s right and true about COVID times, even with profound autism, in the beauty of the view beyond.

He said it, because I said it. “It’s amazing,” Jeff chanted, on the morning of the annual ISP meeting, as he ran through the living room in his PJs. A word snippet that he captured mid-air, as I grumbled about some inane event that blocked me from our goal. My words had snark. Frustration, born of history. Fear. – Yet Jeff made them song. Happy and free, his crystal-clear voice lilted, reshaping two simple words and giving them back to me, far better than I gave to him.

It really is amazing.

Here we sit, over 15 weeks since the men last boarded the morning bus for their day program. Since house arrest, and husbandly flu, and a new pandemic schedule, and house-ly, inwardly focus. Since churches closed, and New Hampshire said please don’t come and hike, and we bumbled into a new daily schedule focused on long walks and Zoom-ing ourselves into new connections.

We made it.

It’s amazing we didn’t lose Will as his own frustration with a shrunken life manifested in bolts at 2 am into the night If only his fervor for proficiency at the automatic garage door, and the pride in accomplishment at making Mommy lunatic-mad again, could have been applied to one of his ISP goals. That walking over 500 miles – 500 miles!! – since late March trimmed him, gave him a new something to love from a Dunkin destination – that epitomized COVID’s new paths, and surprising joys.

It’s amazing Jeff has borne through such change with an even keel, a smile, and a song every day. That our ridiculous imperative to always make sure Will is safe and within eyeshot when he’s awake didn’t take away Jeff’s sense of balance, or his smile. That he’s tolerated yet another meds trial and doesn’t hate me, as I watch him struggle and tell him I’m really trying to help him be his better self. That he sweetly sings and smiles when he paints, or climbs mountains.

It’s amazing I didn’t crash the car out of sleep deprivation, or my clients didn’t fire me for juggling too many balls as I squished 30 hours of work into 15 hours/week in between Zooms and staff availability.

It’s amazing we’re still married and I haven’t thrown a shoe through the damn TV usurped for manly content, while the honey-do chores like bathroom cleaning – there’s just no time!

It’s amazing our daughter blossomed into a lovely human, and actually enjoys hanging out with us in all our weirdness.

COVID-19 barely scratched us, compared to those ravaged by the disease, and the hundreds of thousands who have fallen. Blissfully sleeping in new big boy beds, I can kiss their foreheads, and tell them I love them in deeds purer than words.

Autism’s ugliest parts like self-injurious behavior didn’t arrive at our door, apart from Jeff’s slight rubbing his fingers when he has to wear gloves he doesn’t like at the food pantry. We weren’t forced into the unfairness of choosing to leave our kids in a group home where we were banned from visiting lest we infect them – or forced to take them home and manage them 7/24 with no help. We appear to be on track toward a more optimal day program, and despite my stunning inability to actually finish any one task while 50 undone ones surround me, I felt near-exhilaration at making time to sit here and let the words flow, not for hire.

It’s amazing that a pandemic could bring us closer to our real selves. As we reclaim our lost loves – hiking in New Hampshire for the first time last Sunday, on a trail we did in the crunch of February snows – I was amazed at all the things I didn’t see before. A rock stairway that shaped easier footing near the top. The view from Peak 2 (Belknap) back at Peak 1 (Gunstock), where Jeff and Paul and I looked back at where we’d been, as we headed up. Will’s tiny smile as I snapped a picture of him simply walking in the woods, a wordless “I like this.” The same smile when he stopped himself from bounding through the porch door and used the “I want swimming pool please.”

The dewy wonder of the view from my office today says it all, my new-old-reclaimed desk now facing a different direction, where the cardinal red of my neighbor’s mailbox shouts “I’m here! I’m beautiful!” next to the willowy green bush. So much is new, and fresh, and growing.