Author Archives: twinmom

Beyond the next mountain

In hiking there’s a moment where you think you’ve reached the summit, and your heart delights. Bright colors flash across your vision as your pace quickens and the glories of the view you imagined pinken the canvas of the sky. But you were wrong. It’s just some meaningless hillock. The skies are grey, you’re exhausted, and your beyond is lost.

Your heart drops. Exhaustion, or fear, growls, louder. Your aching sinews. The entourage you’re leading, whose sweaty brows and tired eyes look into yours, wondering without words. Do you stay the course, or listen to the winds? Then there’s the spark, flicking a fuel inside you didn’t think you have. Then the knowing. And the next step.

Our 2020 Coronavirus trail was like that, and more – even now, as we ended the year in the way we survived it. One foot at a time, marching our daily miles to a Dunkin’, singing, certainly looking different, pushing away a doubtful fog by striding into a still-unsettled and unsettling new year.

Never did I imagine on March 3 in a hotel room in Cuba, on tour with my mother while CNN reported of a Biogen conference in Boston infecting over a hundred attendees, that the virus would so affect us. We’ve been blessed, compared to so many. Our family stayed intact, mostly healthy with the exception of a niece and nephew with mild cases, mostly employed, mostly managing the confusion and boredom of two very challenged young men. Last year I castigated myself for slowness in the grand plan of a future living situation for Will and Jeff outside Mom and Dad’s home. In 2020 it was a supreme blessing. By residing in the family home, our sons avoided the group home lockdown of 13 weeks, where parents were barred from seeing their loved ones – and these already challenged young adults were left without structure or understanding. A lockdown that inspired self-injurious behavior, or seething that turned against parents.

More importantly, because I also had at-home support funding to keep Will and Jeff safe, I had two Essential Worker who epitomized the name. They saved me. Despite taunts from rude others as they walked loops with little else to do, these two showed up here four or five days a week as my rudder against a COVID storm. As both boys but especially Will acted out from not understanding why this Coronavirus shrunk their world, I had four to six hours a day to work and pretend I’m more than just a special needs mom. I owe them an incredible debt.

We more than survived here. We walked our way to wellness, by finding the boys’ love of a simple medium iced coffee at a Dunkin’s in a gas station 2.7 miles away. So simple, so small an act to be transformative. The Dunkin Trail became our beyond. When day programs and churches and gyms and restaurants closed, and we were asked not to bring our germs northward into the New Hampshire and Maine mountains, we found trails of our own. Serendipity! Simple delights! We may not have had Four Thousand Footers, but we had feet to carry us, friends and loving supporters to help, and the ability to seek a new summit of joy. In our near-daily 5.4 mile round trips to Dunkin, my guys found an event to organize their day, a reason to wake up, healthful exercise, and a daily delight in a cool plastic cup.

Blazing a new path for us went beyond daily walks. I saw how greatly Will benefitted from physical activity, the outdoors, and agency where their disability has long meant they march to some other drummer’s timing. The pandemic pushed me to do what I’d been considering anyway – to partially self-direct their programming to their daily path brought them some small measure of joy.

Self-direction also enabled us to include an every-Monday volunteering job at a food pantry warehouse. COVID restrictions at the day program and its insistence on scheduling in 45-min time blocks with 1:2 staffing would never have allowed the experience, nor the growth Will in particular has gained there. He still has occasional avoidance moments where his perseverative hand-washing or bathrooming unfocuses him. Yet his ability to work for three full hours in a demanding setting speaks volumes about capability, not disability – if only there’s belief, and commitment, in its value.

It also enabled Jeff to participate in Garden Art each Monday through October – to build skills, and hopefully find self-expression beyond what I know. Simple kindness of strangers wrapped us in a blanket of love. A family with a “Take a book-share a book” case on a street we walk to Dunkins became friendly with us, and one day chased us, apologetically maskless, to alert that we needed to come back and get a book someone just donated – a book titled “Twins.” Every day I’m stunned by strangers who wave to us from their cars as we march along – perhaps friends whose faces I can’t see, perhaps frequent passers-by with a high-five for our making sweet lemonade from COVID’s lemons. The odd puzzle piece that we are with autism sometimes feels like a glittering gem, as the universe says we are not odd – we are precious.

Enough pretty talk. COVID sowed plenty of weeds in the garden. Physical activity is great but you can only walk to Dunkins so many minutes a day, before you have to face yourself, your lacks. The guys need way more than daily walks to make a purposeful live. Staff turnover after about four years of consistency was inevitable, and made harder by the pandemic, despite my trying to be a good employer. Finding Monday and Fridays workers to show up oddly continues to be problematic. Disgruntled employees who get the most often whine the loudest at hangnail-size injustices. Food pantry Mondays where I’m usually heaving 50-lb potato sacks leave my left shoulder hurting. Client demands don’t let up even when I wake before the sun to proactively address them. Insomnia dogs me and every few days I fall asleep at 8 pm trying and failing to normalize my rhythms. I try to prune the garden as I can, without taking it too personally which I always do.

Then there’s Jeff, whose easygoing nature means he is readily ignored – both by my own prioritization, and by caregivers focused on making sure Will doesn’t bolt or raid the fridge. I deliberately prioritized Jeff’s painting today, and am working to hire additionally with an eye toward him and his needs.

Last, probably least, though it shouldn’t be, there’s me. I’m failing at daily anything – writing, exercises to staunch the dreaded A-word (arthritis), sleep in a bed not the sofa. I’m behind on the book, getting punched at work more than I’d like, as dust-bunnies gather behind my clutter-piles. Yet. -Yet again. I love that word, and how it interrupts. This year I found my way to this blog, we finished the Belknap 12 and the 52 With a View hiking lists, and deepened family connections made oddly stronger as virtual ones. I’m 5 pounds COVID-heavier and yet my heart is as light, and joyful, as shimmers on the ocean.

Today, on New Year’s Eve, Will and Jeff have traveled nearly 1,000 miles since the pandemic hit – 952.7 to be exact as of this morning. But we’ve gone so much further. We saw a false summit, where the fog of a pandemic obscured the known, and instead found an inner trail called Belief – as in, believing the raw matter inside each of us can guide us, if we but listen and get out of our own way.

The anal retentive goal-setter in me is bummed that holiday weather and busy-ness in December precluded our ability to hit the magic 1000-mile mark during 2020. There’s still today, my inner voice says. Still 18 hours remaining for unsung songs, a dab of color toward a dream canvas we’ve longed to create. The self-pressure is daunting. Working and day program Zooms and essential, overdue Mom exercise and healthcare have to be done. So does a great New Year’s Eve commemoration, if only to show the boys what New Year Eve means. So many more mountains, so little time.

Jeff’s giving me the answer to that, already. While Will and his Dad sleep, Jeff’s chanting “go later,” or some variant, as he circumnavigates the kitchen, then the twinkling lights of the Christmas tree we’ve so loved this year, more than ever. He’s finding his own morning path. And so am I.

CVT Day 161 – Breaking free

Jeff knew it, Will did it, and this terrified, hyper-stressed, yearning for more Mom did what we’ve all perfected on this Corona Virus Trail (CVT).

It’s time to test the boundaries. Try something new. Then trust.

In this bliss of a Sunday morning cool and quiet, Jeff strayed out of our driveway and into the street. Unusual for him, and karmic as I’ve told several people this week he is not my elopement child. I’d sent him out to get the newspapers and practice attending to the task, always a challenge for him. He usually stands yoga-tree legged, singing, watching with fascination, so obviously delighted to spring free from the four walls of his house. Yet today he strayed. Any parent would mildly panic seeing their kiddo standing in the street, and I choked back my instinct to bellow out the open window to call him back.

Yet instead of mounting the glistening green rise of their hill, he stopped, singing so loud I could hear him 100 feet away through the window I’d opened just a crack in case I had to bellow to retrieve him. Looking at all that is home, he came back.

Will apparently didn’t know the boundary as Jeff did, so his was a darker, scarier trip. On Wednesday night as this Mom slept at 1 am – how dare I? – Will bolted out the patio door that the hubby forgot to secure, and walked into the same neighbor’s house in his skivvies. Through the grace of a God who loves drunks and overgrown 5-year olds, Will came back. Firstly thank heavens for good neighbors. Their visiting daughter guided him out of their bathroom – probably peeing with the door open – and back to our house. But secondly, thank heavens for Will’s beacon for home. What happened after my neighbors “sent him back” is unclear. Did they put back in our porch and house, or merely direct him to his driveway and watch him seemingly go back into the house? Did he swing in the dark, or maybe (god forbid) test the lock on the swimming pool? What he did all night remains a mystery, and even more frightening.

When I woke at 6 am, the patio door was wide open, I thought was odd but maybe a relic of the time I shooed Will back to bed at midnight. It took me 10 minutes to note Will was not in his bed – and to shriek as only an autism Mom can shriek when your wanderer is lost, and you pray that 26 years of ABA, specialists, behavior plans and whatever learning he’s accomplished is put to the test. As I ran to check the garage, in case Will was raiding the spare fridge of cold Diet Cokes, I slapped the automatic garage door button to run out, then realized I was in my PJs with no shoes.

Bounding upstairs for clothes, I flew back down while Paul did the same – and Will walked in the door, Cheshire-cat grinning at what I don’t know. His feet were frigid with a black clump of asphalt stuck between his left toes, but he stared right at me with perfect eye contact as if he was waiting for my reaction – otherwise unharmed. From the temperature of his feet it probably wasn’t out all night, maybe only for a while. He too, came home.

I did the requisite behavioral approach du jour with his bolting – made him use his AAC program’s button that speaks the words “Go outside please,” emphasizing that he has to use his words, not just leave the house. I snickered inside that at a least 5 years of ABA trials worked and he wore pants not his bare bum. But I thanked God he was here, he knew to come back, and whatever good exists in the world that watched over drunks and children – watched over us.

We can all relate – to the yearning to flee, break free, and enlarge our narrowed world.

It’s particularly fitting that we’re testing boundaries as we reach a fork in the road in our Corona Virus Trail (CVT). In two more new days the day program van will arrive in the driveway and Will and Jeff will return three days a week to the schedule they once knew. As parents agonize over hybrid vs. live learning decisions nationwide, I know this one one is right for us. Elopement for Will, and here a little with Jeff, is a symptom. I have to get out, it says. Honestly I do that myself, in normative ways. I plot and plan and strategize so the family schedule involves a Sunday foray into the mountains – yes to recharge my soul, and give us the exercise that enables fried clam dinner splurges and fresh baked bread and cookies. Yet at the core, I too need to bust the limits.

Yet as Robert Frost said, good walls make good neighbors. The pandemic has forced the world to shift boundary lines, and more importantly, given us the permission to do so in whatever most individualized way we need. Our CVT trail and the delight Will and Jeff obtain from simple pleasures like their near daily walks to Dunkin’s has shown me their daily boundaries must change. It pushed me to secure 2-day a week self-directed services and only 3 days of week in the center. It showed me more fully what make my guys learn, smile, and progress. Rugged physical activity, the kind they didn’t get before. ADL guidance with 1:1 support that they cannot get in a traditional day program structure. As a result I committed to a parent group attempting to tackle the state DDS programming and MassHealth funding system to make it accommodate the many individuals for which the pandemic delivered vastly better day programming.

At the same time both Will and Jeff yearn for other people. Will’s elopement speaks to this, as does Jeff’s fascination with others on the trail – and not just pretty girls in sports bras.

I have new boundaries – on what I’ll accept for the boys. On what I’ll accept from staff here. And even, amazingly, on what I need for me.

We have a new short term goal – reaching 600-miles of walking during the pandemic. Maybe because I like the headline “Our 600-Mile Day Program.” Maybe because the boys authentically chose a walk to Dunkin’ today versus our usual hike, and knowing it’ll be 91 degrees with rains coming late afternoon, I said Yes. Maybe because I need to be with them to watch them delight in some small measure of a personal centered life – picking one silly pleasure, and being allowed to let it carry their spirits.

At 585.5 miles today, with just today and tomorrow to score the 14.5 more, it’s a goal post that may be a stretch of a distance. Yet so was independent showering and cereal making for Will, which the pandemic has brought us. As it has expanded asking for help and brotherly crisis-intervention for Jeff. I can’t count the times Jeff has deflected Will from fleeing, raiding the fridge, or taking Mom’s Diet Coke (the latter, probably because Jeff stole it first). The return to the day program also brings new ISP goals, and a return to former routines like waking to an alarm and independently springing to a well-oiled sequence of tasks when a bus beep-beeps and Mom’s heart soars thinking soon, very soon, I’ll see white space in the margins of a page I crave to write.

Will’s video models of me teaching him how to make his bed is on his endless loop right now as he walks around the downstairs, waiting for me to put down the computer and lace up my shoes. Paul just informed me that for the past 10 minutes, maybe longer, the boys’ shower was running unattended, perhaps by someone who knew we typically do showers now, someone trying in their own flawed little way to do the routine they’re supposed to do – and bridge toward the independence Mom and Dad want. Except with the shower curtain in, of course.

Ceiling floods may await, and I may be shrieking anew in 10 seconds at the cost of this latest mishap. Yet we’ll soon set out afresh on a new day, as new goal posts shimmer in the sun. There will be cleanup, and revision of the day’s plan, action items I wont’ achieve, including maybe those remaining 14.5 miles. Yet it’s already a day where, however flawed the steps, we will firmly plant a foot toward the path we deserve – a day we will love.

CVT Day 145 – Our 500-Mile Day Program

Some people walk off the war. Or commemorate a loved one. Or to release a burning they don’t understand, pain that calls for booze or wild living. Or to find a catharsis from demons we cannot see, flinging wide the backpack of their burdens so their spirit soars.

We survived the pandemic by walking to Dunkin’s. Who’d have thought? The simple promise of an iced coffee with sugar free vanilla could carry two highly challenged young men with profound autism to a new land called Purposeful Living – to unexplained happiness – to a life worth living because it honors what genuinely works for you.

Call it our 500-Mile Day Program.

I tallied mileage the other night, because I knew we were close. As of last Sunday August 2, when we summited two little mountains in the Belknap Range, Will and Jeff had walked 500 miles since March 15, 2020 when our day program announced its closure and our world changed.

(to be finished)

CVT Day 146 – New Chapters

The email looked like another weed in our COVID-ly garden, and I opened it expecting to pluck it from my inbox and toss. Until the first words sunk in.

Can the boys return to the day program in two weeks, ahead of our Phase 2?

Talk about a surprise. I’d hunkered down figuring October at best was when we’d be on their list. I’d spent nearly 21 weeks navigating often choppy seas in running Mom’s 500-mile day program and keeping them home and safe 7/24. Lately Will’s bolting has soared, caregivers have gone and new ones arrived, and work demands in my limited time blocks have forced a new prioritization that I hate. My advancing arthritis has created physical issues I wish I could pretend away. I’ve pivoted the boys’ day services to what I wanted all along – partial self-direction – and hired and staffed to make it happen.

If we say yes, the balance we’d struggled to achieve will change again. AFGO – another friggin’ growth experience, as the say in 12-step programs.

Change is so hard, especially with our life grid. The hubby is far more hesitant than me. COVID lingers, he said. Our bubble will balloon, and maybe break with all these new vectors for the virus in our world. Then there’s the staff. One who asked us to change her schedule isn’t thrilled that we’re returning the favor in requiring the flexibility we ask of her. A newly hired helper already flagged she’s living up to her stated plan to leave in mid-September. Another hire due to start next week hasn’t replied to my confirm. My work is on fire, with a favorite client asking for more monthly hours, which is a lovely vote of confidence that will assuredly mean more early mornings and late night if my present “work between zooms” business continues, at least until I equilibrate again.

Then there’s my needs. Ha. As if I’m allowed to have them. I may stretch my limits, but COVID has also taught me and how grouchy and ill -literally – I get if I don’t treat myself with a teensy bit of the loving care I give everyone else.

I’m remembering the lesson of my basil. I repotted and cultivated tiny shoots from a plant the CSA sent with my share in the spring. It lasted over two months – until I continued to let it stand like a green sentry to my nurturance too long. Pot-bound, my gardener-neighbor said. It needs the nutrients of new soil.

I wish there’d still be hope for my basil, but it’s wilted each day, and though I watered and whispered anew this morning, the leaves are mottled with yellow spots, shrunken. I suspect it may be too late.

Yet the stalk has a lime green resilience to it – and when I caressed it, I could feel fresh fluid in its core and the tender white fuzzy hairs that lined its reediness, a beard of the wizened perhaps, or just the one who knows to self-protect in a garden of many others more beautiful.

There’s too much to do in too little time today, as always. Paul and Jenn are asleep, and I have just 90 min left before speech therapy when hopefully one of them will wake to help me. But I already have a plan for buying a larger flower pot and fresh potting soil, mixed lovingly by my own hand, where the base soil beneath it comes from the soil that already has helped us flourish, sturdy earth that will let us bloom again.

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.

CVT Day 82 (I think) – Speaking in Doors

In the land of the limited verbal communicators where I live, I’m learning a new language, and it’s quiet effective.

Doors.

When it’s a slam and a slap -that’s Jeff. His OCD has long meant that every drawer, door and cabinet be tightly and fully aligned, some kind of self-ordering done by the kerflooey mind. While the birds chirp, the slam of the basement door means he’s off to his suspended swing, the cocoon that hugs him in a way he won’t let me. He isn’t usually an early riser, so if I hear him I know I’m really late. Probably missed three self-imposed deadlines. Lost my fifteen minutes of quiet time, my sustenance for the parts of me that need to be more than a mom.

Or if the slap is closer, it’s the hall bathroom closet – Jeff’s voice again, not Will’s. How dare a sock protrude from its corner, fallen from the dirty clothes hamper. Jeff will shove it hard, waking me if I’m dozing.

When it’s a scrapey hinge, the door-whisper of a sneak – that’s Will for sure. I have to hope it’s the bathroom door partially closing. Not the violin-bow of at the French door downstairs, the “fah-so-la-ti-DO! do” melody that arcs upwards, then descends to a slap-bang. Meaning he’s invaded the kitchen and the fresh bread is likely to be defiled by a fist-full grab.

If it’s an automated creak, a metronome in the night that drifts upwards two floors from the garage door – it’s Will, and it means trouble. I bolt shoeless into the hall, trying not to slip on last night’s newspapers that fall as I inevitably doze after two paragraphs. I rush to see if he’s escaped – my biggest fear. Wandering out of the driveway, lilting-voice singing a Raffi tune as he surveys the neighbor’s front door, illuminated in the night. Leaving the basement door wide open of course, for the local chipmunks and field mice to ferret out a stray crumb in the basement.

“WILL!!” I bellow, unaware that it’s 2:15 am and my neighbors may not appreciate this wake-up call.

He’ll return Cheshire-cat grinned, proud of himself for having come at my command, looking at me with those eyes that say he loves me most of anything in the world. But why am I always so angry at him? I mean, you taught me to open the garage door so I could get on the bus. Get the mail. Pick up the newspaper. What’s the big deal Mom?

I’ll launch my harangue like a rocket pre-loaded for a heat-seeking target. I’ll wait til he returns then I’ll wallop shut the basement door from the garage, its hollowness echoing like my own voice, over and over again though no but me hears it. Will will look down at me as he bolts upstairs, and still he’ll grin – only muting that impish smile a bit, enough to scurry in the house and up the stairs while I assess the collateral damage. Bread shards on the floor maybe, or God forbid another bag of chocolate chips chewed open, though I really think I removed them months ago.

I’ll send him back to bed, lay my head on my pillow and wait. For the gentle pad of his feet into the bathroom. For the feet to hopefully pad back. I might snarl “Flush!”, then hear him comply. Or there might be a groan from dead-log of a spouse next to me, who rarely rouses through this entertainment, other than to mumble about the time.

When I hear a short soft whine of his bedroom door as he returns, I can rest. My door ajar, I’ll bid my eyes close but stay watchful.

But if there’s a gentle foot-pad, or if a whisper of light warms what I long to be cool slumber, it’s an alarm that only I can hear. He’s downstairs. He’s turned on the light to the powder room. If there’s gurgling, he’s running cold water over his hands. If a masculine lowness of the rarely opened dining room door talks, he’s tiptoeing through the dining room toward the pantry with the box of Cranberry Morning. Or heading or the the freezer and the cookies we made last week.

No need for Google Translate to comprehend this language. I’ve had a night-long immersion course. Get going, Mom. Your feet must talk back.

CVT Day 75 – It’s Hard

Some days you knock it out of the ballpark, or so it feels. They smile, I smile, the sun shines, we do semi-normal activities, I accomplish some work objectives, cook a fabulous meal, keep their underwear clean. Others you swim in a sea of demands, looking at a slurpy green pool that’s supposed to cool your kiddos today, and wonder when the work will pay off. When the algae of unfinished cleaning is finally balance, calm cool blueness.

Today’s Day 4 since pool opening and by now it “should” be chemically balanced. With a forecast in the mid-80’s and high humidity both guys are looking longingly toward it, even Will who two years ago barely dipped a toe into the waters. I have zero right to complain as 95% of the cleanup work has been done by the hubby, save a little brooming and furniture cleaning on my part, and kid tending while he could do the heavy cleanup.

When’s it going to end – the perpetual repetition, working and working on a goal til it’s accomplished? Jeff’s quelling his self-talk long enough to listen to a speaker and respond, especially on Zoom calls when the laptop is the intermediary. Will’s underwear tolerance, or his increased oral needs that have taken off during the pandemic.

Tiptoeing into his room early today to retrieve his favorite shorts for a quick-cycle wash, I noted Will chewing his comforter. Whether he’s chewing his plastic drinking cup or his shirt, the pandemic has heightened his oral needs, sadly. Jeff’s misbehavior seems to be the hands to the pants which I also hate and gets really annoying especially when in highly inappropriate settings.

Coronavirus, I hate you. I hate the extra four pounds you gave my midsection, the schedule disruption, juggling provider schedules as well as my own, rarely if ever having a blissful block of time from which to accomplish anything. I had it all down or so it seemed before you. I want my life back. I want my sons’ equilibrium restored. I want soothing turquoise-blue to lap my toes as I float, as the boys splash and smile, and use their words to say it’s OK Mom. We’re going to make it.

CVT Day 72 – Opened Doors

It’s just a movie, the hubby and I say to ourselves when a moment sucks and we just have to endure. Like startup clients on the failing end of the dream – those 9 out of 10 that don’t make it. You throw another Hail Mary pass, the fifth this month it seems, knowing it’s unlikely to score, but you’ve got to try. Like pandemic juggling, trying and trying to do that self-care, address those five #1 Top Priorities written on the Post-It-Note because they indeed are vital, they keep you from getting sick or worse, except your sons have other plans. So you juggle even more, knowing you’re juggling eggs that when the splat, won’t be pretty.

It’s another open door, I know.

I’m trying to remember that as today’s fog envelops the birch trees across the street and the lilacs stand poised for another day. Everything in my world is a metaphor. I know it will burn off, this moment and the swimming pool forecast of a high of 82 degrees will float across the lawn of my days. Soon my guys will smile simply looking at what soon will be turquoise waters, despite its too-green to swim tinge, and the need for the hubby to hose the greenness off the filter a few more times until it all kicks in, and we are free.

For the third time in five days, Will has remembered how to push the automatic garage door opener, and left. The good news is each time he came back. The bad news is apparently my sensitive Mommy ears have left, too, so I don’t hear these escapes. Today, God forbid, I was in the bathroom. Last weeks’ two times occurred in the middle of the night. While I was doing the unthinkable of sleeping, he’s sneak, slurk, slide downstairs, open the garage as if it’s his own personal statement of agency. He’d grab a few cool ones from the fridge, and leave open the door to the basement as he returns. I know not this has happened at the time, except for that mother instinct that makes me roll over and sense something is wrong.

I’d check his bed, and when he’s not there, the panic only we special mothers know would take hold of my feet and fly them downstairs to find the dark of night.

On many levels I get it. I live for my own open doors, too. The car door where magical destinations of my making await. My writer-office, cluttered and perpetually evolving yet an oasis of my lists and makings.

I’m immensely grateful that Will appears to only want the open door, not the traverse out of it to a lostness he doesn’t know. To the harms that I close my inner eyes, too painful, searing.

Autism’s communicative impairment at least for my guys means there’s a wellspring of humanity locked inside them that I can’t begin to know, though I try. Yesterday on Memorial Day as we arrived from a busy, demanding food pantry stint to a green swamp of a pool to be cleaned, Will lingered outside the garage, not wanting to go inside even with a promise of a snack. After wordly encouragement, his mouth formed his I want statement. I want to walk to Dunkin Donuts. I felt so bad but at that hour, I needed a break, and with the holiday it was highly likely even if started immediately, Dunkin’s usual short hours were even shorter on a holiday, so the trip would have been for naught. – I told him we’d try for a second neighborhood walk of the day. Sadly I didn’t deliver – by the time we did inside chores and I managed both men so Paul could do more pool work, then dinner, then cleanup, there wasn’t time for a 2+ hour walk. – I guess we have that in common – wanting more than words can say. Yet I couldn’t wait to tell the hubby we’d had a mini-victory. Real words, from a real man locked in an overgrown 5-year old’s spirit – my special gift.

Coronavirus is fresh yeast on whole grains that others pass by, waiting for finer flour. It’s clarified what matters, and showed me how much is right about my family, my sons, the boys’ programming, their team, their spirit. Last but not least, it’s flavored the frothy sourdough I keep within me – old dough that combined with new, makes ragged bubbles that aerate a loaf into artisanal bliss. I tried making one this weekend, but my bubbles were small. Maybe not enough living yet to become really crusty and toothsome.

Coronavirus also revealed where I’ve failed, in teaching Will limits, in lurking evil I can’t pretend away, behind a door I wish he wouldn’t open.

Dammit, the fog is still outside the window. The weather guy, the expert, said it would clear. That today was swimming pool weather – sunny and bright.

Yet as Will blares Raffi tunes behind the windows of the French door to the hallway, Jeff slams the basement door and rushes into the kitchen. Identical DNA, yet uniquely himself. He successfully follows 3 sets of directions I give him to make him realize he’s chosen the wrong cup, and rights himself. Looking me square in the eye over and over, we are connected. A team. In a minute the tired-muscled pool-cleaning hubby plops into the seat next to me with his coffee, regrouping before it’s time for supervising breakfast and showers and another day filming this movie.

I swear I see a patch of brilliance through the window-square of the door.

CVT Day 65 – Mind your P’s with the Q’s

Amazing the ways COVID-19 makes little things count.

After nine weeks away from Will Q’s food pantry volunteering role with the nonprofit Neighbors in Need, I was ecstatic to see its FB post seeking small groups of volunteers to bag foods for its clients. Will’s frequent requests to get out of the house, coupled with the guys’ love of walking, suggests they’re as cooped up as I am with COVID house arrest. I signed up as fast as my arthritic fingers could tap the keys.

The catch was the need to wear masks and gloves, but we’ve had mask success lately, and Jeff Q formerly tolerated. I also had to sneak out of a busy work week, but cell phones make that manageable. The lovely NIN staff made it even better by offering us a role where no one else was in the building, meaning the boys’ quirks like Will’s frequent bathroom requests were less off-putting.

Every day I get myriad opportunities to see autism’s glass as half-full or half-empty. Or, in today’s metaphor, to admire the beauty in an earthy tuber and overlook its dirt. We’d dump a 5-pound bag of spuds onto a table, count them, then divide into 3 separate smaller bags to be distributed in individual packages to clients. Simple enough. With 510 bags to make – dividing 10-5-pounders each inside of 17 brown warehouse bags full of taters, the community could benefit from this minding their Ps with the Qs. (couldn’t resist). However that presumes your 26-year old volunteers can count.

It’s cosmically unfair that my sons’ father scored a perfect 800 on both his SAT and GRE math scores – and their sister was almost the same – while Will and Jeff can barely get four or five forks from the silverware drawer. Here’s my obligatory statement for all the smart asses reading this: yes indeedy, I have tried a thousand ways to drive improved counting proficiency. It’s been an IEP or ISP goal for the last 23 years they’ve had such goals. I’ve tried M&M, beads, checkers, pretend fruit, tracing the numerals in shaving cream and sandpaper, and singing Sesame Street “Count von Count” songs. And more. I die a little death each day when I see that such a fundamental skill still is what teachers call “emerging.” But like anyone facing a wall and knowing it only moves if you try, I swallow the sadness and look for functional contexts to practice. Like with potatoes.

I’d always thought Jeff exceeded Will’s 1:1 correspondence capabilities and that his inaccuracies were mainly attentional. Today showed Will would pause when he reached the designated 4 or 5 spuds, showing me he understood that “four was all done” and waiting for me to hand over the next flimsy produce bag for him to hold open and begin again. While Jeff would recite the numerals yet keep on filling the bag.

Then again I always thought Will had better attending skills. Today he showed his love of fast-paced, repetitive motoric work, like carrying three bags full over to the next table when done. But the nano-second his helper would hesitate, Will would dart away to a nearby sink to run water, another one of his age-inappropriate perseverations that’s been on the rise since the pandemic. OR he’d ask for the bathroom when he’s just gone. Whereas Jeff stayed with me and completed each task, albeit more slowly.

I also thought Jeff’s glove-wearing for years at the bakery would carry over here. But while Jeff tolerated the mask, the gloves bothered him, and within 15 minutes he’d so rubbed his own left ring finger that he got an inch-long blister with a second one developing on his thumb-fold. Will meanwhile whipped off his gloves and mask a half-dozen times, and stripped his glasses off his head so yet again, less than 10 days after his last trip to BJ’s Optical, they’re broken again.

Pommes de Terre a la Will

The good news – and it is always good news, at least if you have the vision to see it – is that we completed 14 of the 17 warehouse sacks – over 400 bags of spuds. We went round the room and popped a freshly counted spud-bag into each of 135 pre-assembled brown paper bags for Tuesday’s clients, and mounded the rest into empty banana boxes to be bagged later. Vickie was incredibly patient with Will while helping me set the bar high by insisting on mask and gloves, although all of us got to cheating a bit by allowing our noses outside of the mask. Maybe it’s me and I’m still too new to masking, but wow it is hard to breather for hours at a time with a mask. How do the check-out clerks do it?.

Jeff calmed down with the blistering himself, and by evening his sore finger looked less red. Will extended his mask wearing although the minute we said masks were all done, his was off.
I realized they’d tolerating a demanding task for three full hours, letting a little pride seep in, mixed with gratitude for NIN allowing us to be a productive member of the community. We’d missed the boys’ exercise class in attempting to finish up, but it was a worth sacrifice to the greater good.

As the next shift of volunteers arrived I grabbed disinfectant to wipe the sorting table now gritty with spud-dust. The smell of bleach against the soil reminded me of clean linens – a favorite Yankee Candle fragrance – and the countless washings-clean that go along with growing something finer than when it starts. One day when I am elbow-deep in the dirt of some other chore, today’s 400 bags of potatoes will have been the tipping point, and I will reap what I sowed. Who knows, it may be in the form of Jeff accurately counting four steak knives at dinner. Or in tilling my own field to see beyond the dust on the spud, to the rough yet graceful arc of its shape.