Monthly Archives: May 2020

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.

CVT Day 63 – Reduction Sauce

In the crazy salad of our COVID-19 days, imperfection brings the sweetest sauce.

Throw it out, my husband said. The orange juice separated into a thick bottom layer and a watery top. Looks weird. Get a fresh one.

As a veteran of watching others overlook the slightly off, imperfect, differently flavored, it raised my shackles. He of all people should know better. Especially now. COVID-19 is emphasizing anew how much we can do with limited larders. Stale bread makes the best croutons. Extra milk nearing expiry becomes homemade ricotta cheese. Salad without lettuce becomes a Buddha bowl. A little acidity in orange juice is nothing. I had 2 cups of wonder-making in my hand.

First it was orange-chocolate chip muffins, where the juice’s piquancy coupled with zest and sour cream made for little black polka-dotted crowns of sweetness.

Next is was King Arthur’s 100% whole wheat sandwich bread, my favorite whole grained loaf. Their cookbook extols OJ’s ability to offset acidity in whole wheat flour, and when combined with whole milk, sugar, instant mashed potatoes and nonfat dry milk power, is almost heavenly.

But the evening’s finest was the orange reduction sauce a la Martha Stewart – the secret ingredient in her orange vinaigrette salad dressing. Simply boil orange juice for an hour until it’s one-sixth of its former self, and dress whatever you have on hand.

The recipe calls for the seemingly impossible. Simply let life heat it up, and wait. Don’t fear the heat. Don’t mollycoddle. Sweat out the impurities. Sear until the bubbling and boiling threaten to froth over their pot and scar the countertop. Stop thinking that as the chef your job is to lovingly coax and elevate. Tread the fine line between cultivating, and killing with the tough love. Let simmer, and let go. Take your eyes off the pot for a few minutes – just 10, maybe -and trust will it change.

I stepped away from the stove to rinse beautifully shaped spears of Romaine left lying at the back of the vegetable bin, and knead homemade pizza dough for the rest of the meal.

Before I knew the kitchen smelled like a citrus grove, and a blood-orange paste emerged under the pot lid. My juice was now a few tablespoons of thick paste. Distilled to its new, improved essence. A blank page on which to compose and elevate.

I whisked in a few tablespoons of vinegar, a drizzle of oil, fresh cracked pepper and salt. The result was – amazing. Complex, nipped by acid and yet sweet. Worthy of a five-stair restaurant. I gave the hubby a taste on a green leaf, and he ooh’ed in agreement.

I’m still savoring. Reduced to its essence, the almost-rejected that heat and time burnished it into unbelievable sweetness – is what feeds us.

CVT Day 58 – The 100-Mile Day Program

In the giant juggling act that is COVID life now, when business models are rewriting themselves, almost everyone has reframed their day, and reexamined their place in the world. The place is usually no longer a physical dot on a map anymore. Many of us strain for an equilibrium in where and who we are, as frothy seas toss our tender little life raft.

I think I have found my twin sons’ new best place. On their own two feet.

I call it the 100-Mile Day program. The traditional adult day program model for disabled individuals was typically a location where individuals gathered – a hub for community volunteering and work, a centering place from which goals were defined and services delivered. Self-directed programming initiatives existed, at least in Massachusetts, but had limited adoption given the difficulty in hiring and maintaining staff for an admittedly challenging population.

Now parents and caregivers supporting the disabled are it. Suddenly it was up to us to cobble together some structure within our walls that kept our kids safe, busy and half-sane. The lucky among us got to do so while juggling a full-time job. The unlucky got more time to play teacher, but the added financial stress.

In those early days Facebook groups for parents of special kids were awash with ideas of how to help your special individual cope. I practically lived there. Several hours daily I clipped links to virtual zoo tours, read-to-me story time, Coronavirus social stories to explain what was going on, and more.

The previously posted COVID-19 Daily Schedule was my guide, but it didn’t entirely fit. I need to work in early mornings even if I clamp it to only essentials, and their “academics” at age 26 given their flavor of autism requires placing everything in a functional context of a daily life skill – meaning Mom or a helper has to guide it. Not something easily done when you’re supposed to write cogent drafts with your client’s key message.

Buried in a voluminous email was a link to the 100-Mile Challenge, a non-profit first founded to attack childhood obesity. It promoted a 26-day, walk as much as you can initiative to get kids moving instead of spending an indefinite future sitting in front of a screen.

Being avid hikers, a long daily walk was a natural for us. We usually walk the 2.4 mile loop around our neighborhood 3-5 times weekly, plus swimming and occasional rainy day walks at the gym, and our weekend 5-8 mile hikes. But the life-changing spark was when I realized a cut-back road lead toward a Dunkin’ location in a gas station – and that the final 0.2 miles had sidewalks. Laughingly calling it the Dunkin’ Trail, it became the boys’ new nirvana.

I used to think it was the iced coffee – or the free mocha shot our new favorite barista, Miranda, snuck into their cup along with her scribbled smiley-face next to the boy’s names. Or the occasional donut. Or the fresh air, and new scenery beyond our neighborhood.

Now I know it is far more. Will and Jeff don’t speak enough to tell me with words why their #1, immediate and broad beaming smile-inducing choice when I show pictures on the AAC software is a walk to Dunkin’s. Yet their grins are so radiant – their sing-songy self talk so clear and joyful – that I know something is meaningful, even if I know not the word to hold it.

So walking is the heart of our day program. Morning after rising is free time, then we do breakfast and do the morning toothbrush/shave/shower routine that drives toward increased independence. It’s like we did when a bus beep-beeped in our driveway to drive 25 minutes north, except there’s more free time.

By week 3 their day program began offering daily Zoom morning meetings and afternoon exercise class, and they were early to do so. We walk as soon as morning meeting is done, and until exercise class starts, usually throwing lunch and its ADL goal-building skills in there. If it rains, there’s in-home fine motor skill building and ADL practice such as folding shirts, as directed by my incredible skills trainer helper.

As time’s progressed, we’ve added items. At first prior to the day program’s Zooms we participated in family dance classes, like Zumba for autism. I loved them but the dance moves were hard to follow and eventually the boys stopped doing them in favor of sitting on bean bag chairs. So family dance became occasional, until each young man started telling me with their AAC choices that the wanted to do other things.

Since the helps leaves between 3-4 pm after doing inside activities like folding clothes or 1:1 number practice work, I occasionally add new activities during this time block, like Jeff’s weekly art therapy class, a Will knot-tying class, and drum circle.

Where the schedule falls down is at 4 pm, when I usually still have to work and the boys must self-start with some minimal assistance on independent play for 60-90 minutes until one of us starts dinner and they begin helping with peeling carrots, opening cans, setting the table and the like. If not highly engaged Will will run upstairs to disrobe – at least he’s doing so in his room which is semi-normative. Laugh about a naked room all you want, but I don’t believe this is appropriate behavior for any setting where others live, so I prohibit it. I also prohibit his wearing boxer shorts around the house during the day, as a non-normative behavior I wouldn’t want I used to feel guilty about having to work but truly, these men have to be able to navigate free time without overt direction.

Today as I write this, the boys have walked over 200 miles in the six weeks since April 30 when we began the 100-miles challenge. They’re averaging 100 miles in 20 days, helped by the weekends where we’ve been clocking 7-8 miles as we added restaurants and conservation trails as destinations. Each has lost about 5 lbs of early COVID indulgence-weight. Will in particular has quickened his pace, such that we exceed the time estimates of my iPhone’s GPS app and its walk–time estimator. As the late-day sun soothes and my own arthritic bones need loosening, the boys eagerly jump up for a quick mile lap around our adjoining cul-de-sacs.

Can walking bring meaning? Is movement a right and fitting heart of a life? Can someone center their day around physical activity and from that, be better at whatever else engages him?

The metric is evolving, and qualitative. When Jeff is 10 paces ahead, stops as soon as I ask, turns to face me, and smiles. When Will, with a cock-eyed grin and sing-song invented tunes, looks me squarely in the eye, and beams. When each listens to long-worked-on safety commands like moving to the side of the road. When we return to our physical home, and the bodily home seems calmer, at ease, rested in their favorite La-Z-Boy chairs as if skin and nerves and jumpy organism unite.

We’re all walking a new path, especially now. Achieving a full, meaningful life is no longer simple task, as if it ever was for the challenged. My sons’ 100-mile day program symbolizes the person-centered planning we’re supposed to do – and that somehow formalistic day programs shunt as they seek to serve the many often at the expense of the individual. Walking sustains my sons from a place I don’t fully understand, but note so clearly. My sons are unfettered at home with me or 1-2 caregivers to truly individualize their programming, versus at the day program where the capabilities of the lowest common denominator dictate time and activities in 45 minute time slots, on a day everyone shows up for work, or before some staffer has to leave to serve the needs of others. Now my sons get what they really want, need and desire.

I knew it before, sort of, but seeing it so clearly has upended my own vision for what they want and need for a rich and purposeful life. This is not just a COVID-19 bypass, or a stop-gap measure until the state reopens day programs.

Will and Jeff’s daily bi-ped journeys are leading them to their next, best selves. They themselves are geotracing a map to what they need – a map for the rest of us to follow.

CVT Day 57 – My COVID-19 Schedule

Thanks to whomever developed this schedule – I will go back and source this later when I have time. It emerged online in the early days of the pandemic when special needs program closures meant our community was floundering. With my guys needing consistency and routine, just having a target framework like this helped us set up a new normal day “program” of sorts.

Below is what we have evolved to use. Imperfect, as is anything, and where life falls down especially for Will is during “independent play’ which is also a code word for Mom and Dad are working and busy. Mom’s job being deadline- and client need-driven – also known as the “Jump? How High?” business model – I often can’t just stop work at 4 pm when the helpers leave. We’re always working, both at growing the boys’ independent recreation skills and my trying to set work boundaries.

I’m considering some overhauls of the below, but it’s what we use for now – and is reasonably working.

Q Family COVID-19 Schedule
7:00 AMWake up, make breakfast, chores
8:00 AMIndependent play while Mom and Dad do essential emails; brush teeth/shave/shower
9:00 ishHousecleaning; morning meeting set-up
10:00 AMMorning meeting
10:45 AMChoices; transition to activity or walk
11:00 AMWalk 5.4 mi /5.8 mi to Dunkin; purchasing
11:00 AMoptional fine motor/”academic” skills activity if rainy or if chosen
1:30 PMLunch (if walk only, no activity
2:00 PMExercise class
2:45 PMFold clothes, paint, cleanup or sort
3:30 PMSnack, time adjusted dep on lunch
4:00 PMIndependent play
5:00 PMOptional short walk, dinner prep help
6:30 PMDinner (often later dep on parent work)
7:30 PMIndep play, TV now on
9:00 PMSnack
10:00 PMToothbrushing/flossing and bed; read if chosen

CVT Day 56 – Hidden Treasure

Who knew I would have such beauty, and that bliss this wide and deep is so close to home.

Tomorrow there will be work, and rain, and our daughter will return to her apartment. I’ll need to vacuum, and de-COVID-ize door handles, and slay autism’s foes, and swallow disappointment over failings and disconnections and many things I am not. But just for today, Mother’s Day, I soaked in bliss.

Could I ever have imagined at age 29, when I “succumbed” to marriage, that I would have these three gifts. I could rhapsodize on each of them for paragraphs. Their gentle spirits, even Will with his quirks. Their inner light. The beauty they already have painted across the skies of their worlds, and mine.

Being wonderful, they indulged me, and I loved every moment. My choice of breakfast. Writing time. Church on TV. Late showers and a long 8 mile walk through conservation land I’ve driven by for over 28 years, and only thanks to COVID-19 been forced to discover. Surprise presents and ones I’ve wanted. Time- precious time, with them and on my own.

If life gives you what you need, I’m stunned, and grateful. Stunned that my career-driven 20’s still let me find a life-partner who put up with me and all my weirdness. Stunned that career didn’t seem so vital after the birth of a beautiful daughter, coinciding with being laid off so that I jumped off the corporate train and hung up my own shingle. Stunned that I had twins, further stunned that I could somehow learn to manage being a TwinMom – then shot in the heart when their autism turned fairy tales to mud.

Grateful for hundreds of helpers on a new trail I never though I’d enter – where a warrior-like mission to ‘eliminate the diagnosis’ – a parental code word for cure their autism – gradually faded. Grateful to the heavens that our bumbling through therapies and my desperate clinging to a search for a “cure” led us to mountain glories. Grateful that I didn’t ruin our daughter, our marriage, or myself in trying to help them. Grateful that despite the boys’ many limits, they have amazing capabilities, and over time I really think they have found balance, and peace, and on some days, happiness. Grateful that Jenn became such a lovely adult.

We are what we love. I love these three humans the most in the whole world. If I can have a fraction of the goodness inside – the perseverance, determination, and purity – my happiness will touch the sky. Like it did today.

CVT Day 55 – The charging station

Better than an electric jump-start.

I hate you, slumber. When my body gives out to you, despite a To-Do list yards long.

As May snowflakes poured down, and my usual 6 am Saturday writer-reverie got Tasked til it sadly faded, the caffeine stopped working. Even the tasks I like – breadbaking – became irritating. I spent 90 minutes obsessing over the weekly social story I create prior to the boys’ speech therapy session, to facilitate “what did we do this week?” conversations – to the point I barely had time to brush my teeth, and zero to primp yet another bad hair day from showing my reality as a strung-out, doing too much mom.

Zoom speech therapy is a hit or miss activity lately. Today was worse than usual, with Will’s seeming progress evaporating at following directions from this talking head that used to be in his kitchen, now on Mom’s laptop. The social story didn’t appeal to them one bit. Jeff’s new meds, if they ever worked, certainly didn’t today, and his self-talk meant probably 20 reminders to use your quiet mouth during a 30 minute session.

Nothing can sink your heart like your kids working on a simple skill for about three or four years, only to fail at it time and again – as if you, parent, hadn’t done anything at all.

We knew a cooped-up, bad weather day would spell trouble. So we treated ourselves to a Chipotle wrap lunch, and told the boys well in advance on the family daily schedule so there was a reward after speech and household clean-ups. It was hand-delivered by our lovely daughter who was out doing several store runs so she could prepare a sumptuous vegan feast, and bring home Mothers Day surprises.

The boys needed continued structure after lunch, more time being “helpers,” my mind said. Over across the room, I heard the fluffiness of the blanket whisper. Come. I slept for over two hours.

Guilty, decadent, a tiny bit panicked about time lost on my single-spaced scrawl of a Chores column, I looked over instinctively to find them. Both boys in their La-Z-Boys, a little stimmy but actually not bad. Paul and Jenn were here, reading, relaxing. Maybe everyone’s batteries needed charging.

The sun floated in and out of clouds, such that we snuck in a brief neighborhood walk. Braving the bluster, I thought about our last real mountain hike on March 17, the day life changed. The crunch of the snow. The hug of my buff neck gaiter across my hair, back when it was a defense against wind chill not social distance apparel. I felt I’d wasted today. So much still undone. Yet as Jenn joined us, there was symmetry, and balance more than I’d known in the morning. No one else was out walking but we five intrepid COVID warriors. As usual. I laughed. Blanketed in changing weather, our family blessedly together when so many others are not, there was Jenn’s vegan feast ahead, and the usual Will disrobe prevention that hits this hour of the day. She was making something that translated to Garden of Nine Delights, where coconut-milk sauce blanketed rough-hewn vegetables, and earthly imperfection stewed and rested in the sweetness of home-made sauce.

CVT Day 54 – All Mine

Savoring this moment once more, before our coronavirus trails diverge.

The beauty of these days has been in simple moments – balance in the oddest of times -purpose that others struggle to find. Today our CoronaVirus Trail #54 day, being Friday ahead of Mother’s Day, I needed these men to myself. Some might call it a want, but I knew it was need. So I structured their helper’s work to allow morning work and activities toward their skill-building goals, yet committed to do the Dunkin’ walk myself in the afternoon.

Some might say a daily walk to buy iced coffee isn’t a major component of an adult life. Too small. Not connected to a larger goal of employment or community. They are dead wrong.

Look at those smiles. (admittedly this picture is a few weeks old because I was so enjoying the moment I forgot to take a new one, with our masks on inside the Dunkin convenience store.) In a disability characterized by isolation and frustration, often expressed in self-injury, and for Will lately, in tears – these face beam a contentedness I never knew you could get from a daily walk.
When given choices of activities, both men pick this walk #1, hands down. I wish they had the words to tell me why, so I have to go on other signs. Smiles. The zest in their steps. How the walked have allowed each to lose about 5 lbs. of early COVID noshing-pudge – so much so, that lately I’ve allowed Free Donut Friday to become a new family holiday.

How this Dunkin walk was a mom’s desperation move, when Dad’s non-COVID flu and early days of missing their usual day program routine meant the boys were squirrely beyond belief, and needed something, anything as structure and goal. How finding this Dunkin trail epitomized the search every special parent undertakes for those moments of connection, engagement and, dare I say, meaning.

I just had to grab one more of these moments before Saturday’s rains, and Sunday’s Mother’s Day agenda which will be a hike or wooded walk and not Dunkin’s. As I think broadly about what’s worked exceedingly well during this time and what I want to keep in the boys day programming – as a full moon of glory rises tonight to say there is still hope, and wonder left – I needed to see if this walk as a way to ask them.

Their feet, their smiles, their eagerness to be here with me spoke the words I needed, as we walked the old, new way home.

CVT Day 52 – Stuff you can’t make up

100% truthful events to narrate that reality with autism is stranger than any fictional account conjured by a sick brain.

  • What’s that on the fluzzy white bathmat in the boys’ bathroom? Waking at 5:30 am, I hurried past, with the coffee pot in my sights. Was it a mouse? A stuffed-inside sock?
    No, just a giant poop-turd, waiting for me on the floor. Good morning Mom.
  • At 5:45 am, with coffee barely dripping one-eighth of the pot-full, my men awake. No quiet for Mom today. Keeping my #1 objective in sight, I deflect Will’s garage-forays to attempt to open beer. I listen to Jeff’s furtive up and down the stairs-running to make sure it’s him and not Will. I measure flour and milk into the bread machine since there’s none left and I just baked on Sunday. By 7 am I still hadn’t achieved the morning’s goal: brushing my teeth.
  • Will threw up all over the powder room at 7:15 am. I guess three 16-ounce tumblers of ice water, a pear and an apple was a bit much. Fortunately the reinforcements fortunately trundled down the stairs immediately after said event, plopping into a recliner, bleary eyed. I guess it is I who is destined for vomit-wiping.
  • Meanwhile there’s a rustling sound as I hear Will foraging in the fridge, probably with grapes. I bellow from the powder room floor to the reinforcements asking what the *@%!&%* he’s doing sitting there and allowing Will to eat and drink more.
  • By 8 am a CEO-client emails and I realize I have to accelerate showers and rising routine by an hour to have myself ready for a video Zoom session with him in at 9 am. Stressed by needing a client-presentable look, preferably without vomit in my hair, and teeth brushed, I take heart that Zooms don’t show whether you’d flossed.
  • Whew! Hair wet but intact, I lock myself in my office from any intruders, survive the call -with minty-fresh teeth no less. I quickly revise a document fast and get the boys aligned for their 10 am Morning Meeting. The first loaf I had baked in between throw-up cleanup browns nicely while the boys name the days of the week and like Houdini Will manages to bolt at least four times from a six-inch gap in front of his chair designed to keep him there.
  • At 10:40 am I breathe relief. My superb respite helper takes the boys for a walk and entertainment for a few hours – freeing me to furiously revise documents, bake loaf #2, update spreadsheets, sneak open a pack of my favorite New York Style Sesame Flats to nibble on a few and fly through Zoom calls #3, 4 and 5 until 1:45 pm arrives, and the helper departs ahead of Zoom Call #6 with the boys Exercise Group.
  • By 3 pm Will tries his best at a poorly visualized but great idea of a outdoors knot-tying workshop during Zoom #6. With 20 min to spare before my next Zoom, I furiously iterate with clients before Jeff’s 4 pm art therapy class at Zoom #7.
  • At last! at 4:45 I give the boys protein bars and pretzels for a quick snack, and hand them off to the hubby while I finish up work, and our lovely daughter makes a spectacular albeit complex fried rice with peanut sauce.
  • Uh-oh. At 6:15 Will tasted a fist-ful of peanut butter all over his shirt. I help him change and send him upstairs to get a shirt out of his drawer.
  • 15 minutes later, the hubby emerges to find Will has thrown every the contents of three full bureau drawers into the dirty clothes bin.
  • Finally, at 6:50 pm, we eat a lovely meal ahead of my 8th Zoom of the day, a slide show at 7 pm from a fellow hiker’s trip up Mt. Whitney two years ago. I stretch out under my favorite fuzzy leopard-skin blanket as Jeff sits singing in his recliner nearby, and Will does laps through the dining room and hallway watching us. I fall asleep before a few slides before it ends, to the sound of hubby calling Will’s name, with Will nowhere to be found.
  • We retrieve Will and he has a few small chocolates from me, ahead of a small bowl of creamy hand-packed ice cream that Jenn bought on Sunday. After which he immediately rushes into the bread drawer, plants a fist into my stunningly crowned white sandwich loaf, eating a quarter of the fresh loaf with one giant mouthful. After the ice cream.
  • Screaming as if he’d inflicted pain, I was that bad, mad Mom you’re never supposed to be. I made him spit out the bread. I sent him to his room, while I picked bread-hunks off the floor.
  • Carrying my work computer up to my office ahead of helping Will brush and floss, I saw the empty bread flats box, near a heap of spent sesame seeds on the bed in my guest bedroom-office. He’d consumed the remaining 12 flats – AFTER the bread steal.
  • At 9:30 pm, I made Will vacuum my office, and endure one of “those” motherly chats about how he was a great young man but he had some bad behavior, and maybe tomorrow we can have a better day – while Jeff jumped in and out of bed.

I thought about the day program exercise class staffers complaining about how they’d binge-watched everything new on Netflix and were bored. Or the friend who had time to sew pet clothes on the side. Or faceless people online who laugh about never wearing pants in their new work from home life.

This is us here – autism under quarantine. Wearing pants for sure. Surviving, better than many. Yet oh, man. There are days.