Author Archives: twinmom

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.

CVT Day 49 – When men don’t sleep

You’d think a 7.3 mile walk would be enough. To calm them. To make them sleep. To let me catch my breath.

Will apparently needed maybe 10 miles or 15 miles of walking, because at 11:30 pm on Saturday night, we did that cat and mouse game he loves to do. When the hubby was snoring, I heard the pitter-patter of someone attempting a midnight snack-raid. Shooing him back, I fell asleep with the door open and the hallway light waking me all night. Not exactly restful. In truth it only took 3 or 4 bellowed scoldings of “time for bed!” – and only one furious hop from my bed to scour the hallways for intruders – before he tired of the game.

The damage was done to my always fractured sleep, though. The fun continued Sunday, CVT Day 49. As anyone who knows me knows, I need my morning inner sanctum. I consider it rude beyond belief that when I wake at 5:45 am for an hour or so of uninterrupted writing and peace, like little birdlings craning their neck for Mom to drop in a worm, my sons chirp in seconds, eager to be near me.

Usually Jeff is manageable, and I can do what I need to do which is usually write and read. Today he slammed doors – his OCD meaning every cabinet, door and soft-soap container has to be neatly aligned. Of course this woke Will. By 6 am both of them were up, down, pants on, pants off, and after 90 minutes attempting to get them self-engaged so I could do something on my own – I had to shake the reinforcements out of snoring-sleep with the insistent “it’s your turn.”

Mom’s sleep deprivation is so mild in the scheme of COVID-19 autism family dramas I feel bad detailing it. Yet night on night, especially when mixed with my own sleep issues, exhaustion grows wearying. I hate, hate, hate being the one who’s always adjusting my wants and needs, as if I don’t matter.

We eked out a decent day – church-on-TV in the morning, late showers, even later walk due to some other hubby priorities that had to get done. We even cut the boys hair – Paul doing more than me, but who cares. Sporting their bad haircuts, they smile and tolerated more than I expected with a makeshift cape made of a black trash bag with a cut-out neck hole, arms straight-jacketed by their sides.

All’s well that ends well as they say. Except one of these days the Mom’s fractured life is going to catch up to her. Mark my words.

CVT Day 48 – All Sunshine

Sing it, Billy Joel…..I’ve loved these days.

Autism sucks, our friend Rona is a drag, and her restrictions to our freedom can crimp the spirit. Every time I look at hiking maps I get sad, wondering when I can reconnect with passions tucked under some rug called Soon. Yet the Coronavirus Trail has such pluses. Ours has been the discovery of local walks – extended family time – a pass on ever-present perfectionism – and tiny buds of newness.

Here’s Saturday Lunch Walk Redux – a 7.3 mile circuit to a local, you guessed it, a Dunkin’s next to a fabulous egg cafe with an emerald-grass carpet, as nodding yellow daffodils cluster and smile on the cul-de-sac beyond. We reward the boys with the java, and pick up the to-go lunch like a brown bag of hope, and spread out in the bright sunshine. This week we lingered for 45 minutes, savoring the specialties of the upscale cafe’s eggs-on-everything motif. My mouth waters just thinking of it. Golden egg yolk oozing into chorizo-sweet potato hash with remoulade dressing, or sunny-sided cheeseburgers and egg, or scrambled-egg burrito with hidden flecks of goodies.

Eggs are the symbol of creation according to philosophers. I’m loving what we’re creating during these hard times. So much I never knew. That there are sidewalks along most of this major 2-lane road leading to this restaurant and another Dunkin’s. That there’s a trail on conservation land right along our path, should woodland walks call. That the boys are calm and well-behaved on these walks, although the years of running into traffic always make me skittish to say that. That our daughter actually likes hanging out with us. That she’s turned into such a lovely human.

Here’s even more I learned this Saturday. That the boys can tolerate real face masks, Jeff better than Will but considering we’ve only just begun practicing, that’s not bad. That after a long week with fractured sleep, I need to take a nap sometimes. That despite funky cocktails that sound hip on web sites, bourbon drinks just don’t do it for me. That Jeff’s attentional issues are profound, and I need to spend more time helping him. That I’m amazed at how everyone else seems to get more household projects done;- then again they probably aren’t chasing Will up and down the stairs to verify he’s wearing pants.

That it’s time. Time for major changes in the boys’ programming and my own priorities on meaningful work, household neatness, my definition of accomplishment. Time for more time, for walks, books, friends.

Rain’s in the forecast tomorrow, and probably many tomorrows on our walk back to reality. But just for today, I’m savoring one little banquet on a lawn under the warm of a loving sky, in a spring of more than flowers.

CVT Day 47 -Big Wins, Little Wins

This man. Triumphs no one understand except fellow autism parent-warriors.

Attention, world.

Will wore his dad’s Buff type face mask for over 20 minutes at BJ’s on Fri 5/1, CoronavirusTrail (CVT) day 47. Unplanned, unprepared, unbelievable.

Here’s what I know about Will: he has a Will. After his glasses fell off his face twice at exercise class that day when I was assisting, I finally remembered to phone BJ’s Optical to see if they’re adjusting frames. The kind optician said the store’s not officially adjusting frames, but I’ll do you a favor if you get here in an hour. I took a breath. This was his first store trip since the pandemic, expressly because of the mask.

With MA governor mandating face masks in public in just five more days, it was time. At BJ’s huge ATTENTION signs highly encouraged face masks. Every single shopper in line already had donned theirs. Will, you have to wear a mask, I said, pointing to the sign. Remember, the coronavirus. It’s a ________.

“Germ,” he said, yanking down Dad’s buff-style mask that I’d just pulled on.

I pulled it up. He yanked down. Ballet de Mask – a pas de deux of the autism power-struggle kind. We’ve choreographed it for years. Today we danced it well, least 10 more times, with the optician entering stage right a few times. He’d flash me an irritated look with those doe-eyes that could slice. The optician would lean forward into our frame, then lean back. Somehow we made it through about 10 minutes and two eyeglass-pairs of adjustments.

I hated to press my luck, seeing at least 15 carts queued to the left behind the big-screen TVs. With no more lettuce left at home, I was hoping to snag 10 minutes to run through the store for milk, lettuce and lunch meat to tide us til Tuesday. Choices, I thought. Give him choices.

Will, do you want to buy lettuce here, or go home.

Home, he said. – OK. The optician said the produce aisle was probably barren anyway. – I was willing to accept his choice. Yet he lives by his daily salad, and the half-dead spinach and romaine leaves at the back of the bin would barely be enough for him let alone his twin.

Will, do you want lettuce for dinner, or go home, I said to his eyes one more time.

Lettuce, he said this time. I tucked his mask up under his now-snug glasses and put his hands on the cart, getting him to push.

Amazingly, three boxes of lettuce were left. Keep him busy, I thought. Count out four heads. Push the cart through the produce, then the deli line. Great job, Will. Let’s walk more. Want sausage? How about salad dressing?

With barely two or three mask-fixes, we endured – even a 20-person long checkout line. Will even told me he needed the bathroom, my fellow shoppers let my cart hold its place, and he even appropriately used the men’s room while i waited 30 feet away toward my cart.

Here’s what I know about Will. Very little. He is far more than what I see. He understands more than I know. He tries. He loves me. He is far more than what I see.

Here’s what I know about me. About autism. About masks I must wear, don’t want to wear, struggle against. About our collective ability to tolerate, and go beyond.

Lots and lots, and yet happily, still very little.