Monthly Archives: March 2020

CVT Day 13 – The Feelings buttons

Today being Saturday, I let myself indulge, feeling guilty for not overtly structuring the day and putting myself higher on the priority list. Long morning writing. Extended coffee chat with the hubby. This mean Will and Jeff had to self-start – which they did. Will surprised me by going to get his own cereal – he usually waits for Jeff to start – and then realizing there were no spoons in the utensil drawer, opened the dishwasher, emptied the utensil bin, then continued on with his cereal-making. Progress!

Dad intervened on cleanup which Will would be delighted to skip, and we proceeded with showers, the noon Family Virtual Dance party, now a fixture in our Coronvirus days, and lunch. We did a little cleanup and I snuck a quick nap, again guilty that my evening insomnia made me exhausted. In seeing Will sitting in his recliner chair rather bored waiting for me, I used his AAC software, TouchChat, to present several choices. He chose a walk to Dunkin Donuts, our new family favorite.

We made it a real hike of sorts, wearing a backpack to carry back a gallon of milk on the way home. Dad even accompanied us today, the first time since he’s been feeling better. Meanwhile Jenn was texting us as she walked the streets of Providence RI, her town. Our family was virtual, yet together under the slight grey flatness of increasing clouds, yet light upper-40 degree breezes. Passing neighbors and friends, it was like a party the minute you opened your door. Everyone honored the 6-foot maxim yet the usual “Hi Neighbor!” took on new enthusiasm. We were all craving each other, and comfort of knowing we were sharing our sacrifice for the common good.

Long-legged and sure-strided, Jeff was at least 30 feet in front of us along the roadsides, and we’d take turns calling to him to stop so Will, always slow, could catch up. I was so proud of how well Jeff listened, and stayed safely along the edge. Always the sherpa, he carried the milk-laden backpack first and barely blinked at its weight, til I and Dad took our turns. Like a comfortable shoe we were back at our trailside adventures. My mind drifted to other ways I could enhance the new routine – maybe an ice cream purchase at the convenience store. Or maybe a different loop that led to the Wendy’s across the interaction.

Once home, the day’s miracle happened. It was 5 pm and a little early for dinner, so I presented the guys with some next choices – fold shirts or cleanup, choosing the former. Jeff cocooned himself in his bodysock, a sign he was tired, so I decided to try the Feelings board of the AAC interface with Will who sat looking at me from his reclinerly perch, eager for the activities that to him frame a connection. The software presents 4 options and speaks them out loud: great, very good, OK, or not good.

I asked Will how he felt about the Dunkin walk – the iced coffee – the Chex Mix snack we just had – and then through in a few tests, like how does he feel about cleaning the kitchen.

Wonders! How did I not know this man, my son! Will made varied, and seemingly accurate Feeling choices! His weren’t the indiscriminate button-pokes of a 5-year old who liked to hear various sounds over and over. This was genuine communication!

I felt tears well up thinking that for years my son was an enigma, that his feelings were bottled inside, and only escaped with flappy hands or dancy jigs or clenched teeth. He knows what he feels, and knows the words that accompanies them. An open door to his soul!

After dinner as I sat reading the newspaper Will leaned over to me on the sofa and twacked my arm to get my attention. He doesn’t do that often, so I was keen to ask and probe for what he wanted. I wish I could have found it – I asked with words, grabbed the iPad and offered TouchChat choices. I’m not sure Will truly wanted to fold clothes before snack time, though we did for a bit.

Our new quarantine existence has stripped time and tasks to the essentials of what really matter. On Day 12 I didn’t cure autism’s language blight on my sons. But I saw glimmers at what could be done, and acceptance from them as well as me that we could make it through this new normal, and be better than when we began.

CVT Day 12 – Our Daily Walks

When life thwarts the plan, a smile is the plan itself.

I’m totally supportive of Coronavirus social distancing measures and our governor’s dictums. Like everyone I’m bored, sad about missing my special places like New Hampshire’s White Mountains, and annoyed at the strictures on my personal freedom that just keep coming.

My work drives even more flexibility, particularly the past two weeks when Paul’s flu meant no respite help. You can only rejuggle your already topsy-turvy schedule so many times until you want to pull your hair out for getting so little accomplished, except agility. I hear harried parents vent about the pain of working from home with their capable, independent, neurotypical kiddos, and my eye-roll probably screams. Given I’ve worked from home for 28+ years while raising three kiddos, including two with profound autism, I’ve got zero sympathy.

I thought I had it down on Friday when I booked a work call for 10:30 am, aligned the morning schedule accordingly, and diverted Will from flooding Jeff’s brand new iPad in puddles of water from his powder room water play. I even fit in an hour for yoga, thankful to the hubby for feeling better and watching the men. I got everyone toothed/shaved/showered in time, completed the call, and did an hour of structured play for each – an 84-piece puzzle with Will, coloring in the lines practice with Jeff. I was thrilled when the boys picked a long walk for our next activity and figured I’d juice up the reward – McDonald’s for takeout fish sandwiches. One of my guilty Lenten pleasures, the 5.4 mile trek mitigated the tartar sauce calories and we could even make it longer by journeying to the pond beyond it.

Leave it to work to barrage me with hot-potato task just 10 minutes into the walk – with only 15% of my phone battery left. Within another 10 minutes my battery life was down to 4%. I had to either blow off the work, which wasn’t smart, or call the hubby to pick us up in my van with the charging cable so I could at least make a phone call. – Our 5.4 miles was trimmed to about 2.5 miles, and the bright sunshine warming our souls had to wait as I rushed back to attend to my deadline.

The boys dealt with the change fine. After all there were still fries with the reordered order. They even moved immediately into the day’s virtual Dance Party time without indigestion. Then, when my sleep-addled brain needed a 45 min nap following it, they got to practice flexibility again. Work then demanded more schedule rearrangement. By 4:30 pm each of them looked at me with “so – what now?” eyes. Will’s distant discomfort over not knowing what day, time and schedule item he was living was a 5-o’clock shadow I couldn’t deny.

Back to basics once more, I rearranged the daily schedule strip to offer two choices – walk or folding shirts. Tilting his head and one-eyed beaming the way he does when he’s really excited, Will finger-pointed to the Walk icon with a vigor that spoke of pent-up promise.

Maybe it was the soul once denied that realized its time had come. Maybe folding shirts is less desirable than it is with his helpers. Will smiled as if the day finally gave him what he wanted.

Hubby joining us, now fully recovered, we sojourned on the shorter 1-mile neighborhood route. We chatted with an old friend on her bike who we didn’t realize now lived nearby, and waved to distant neighbors. We basked in warmth that wasn’t just sunshine.

We walked through the rest of our new coronavirus schedule, folding shirts, a little disinfecting, yet more laundry. I watched my guys manage half-OK with tolerable levels of their behaviors as we parents cooked Friday’s delights: fresh home-delivered swordfish with garlic and lime, creamy-white clam chowder, stuffed clams, asparagus topped with blue cheese.

We ate more than our fill, and I baked my favorite lightened blueberry pie so we could indulge half-healthily for evening snack. The weather forecaster said tomorrow was another day without clouds. Fake news, I thought. He’s coloring reality so the closures and changes wear a new spring coat. Yet as Will and Jeff watched TV with us, just a little stimmy but calm, our daily walk to fish sandwiches and ponds and change and challenge seemed exactly the right tomorrow.

CVT Day 11 – Rinse and Repeat

There’s comfort, annoyance – yet growth – in the over-again cycle of our new days.

The mom I want to be desperately wants to tell you our new normal is Will and Jeff-centric. That our daily schedule rigorously keeps the boys on track. That I’m consistent as the textbooks say I must be to force their growth. That I’ve helped their scrambled neurology with overt structure to show Thursday differs from Friday, from Saturday in our new normal.

The reality is we’re reachers. Four of us live here and have our daily needs to be met. We strain for a brass ring called Everyone’s Happy. We rinse and repeat daily tasks from morning coffee to nightly tooth flossing so we are intact, a micron more capable than the day before, and enrich the earth entire. We jump, we stretch, we hope that next time we’ll grab the magic ring and feel the wonder of being hoisted above our daily selves – finally There. Wherever the new There is.

To do this I’ve had to give up illusions and allow the boys about two hours or stim time – something a behaviorist would label a big No-No, as it sets up stimming as an acceptable activity, rather than forcing more normative patterns. This is vastly different than our former day program schedule where Will’s iPod alarm began playing the Village People’s YMCA -“Young Men- There’s no need to feel down….” – at 6:50 am, with just enough time for a brisk pace of making their lunch, toothbrushing, shaving, showering, dressing and barely making it for the 7:35 am bus.

Short of sacrificing our jobs, our new normal is to loosely supervise the environment yet give everyone a semi-structured block so we all get what we need. I can’t ride herd to the level an ABA purist requires. Essential skills violations are corrected – like their selecting the drinking the cup with their name on it, using a coaster when they place it on the end table beside their La-Z-Boy chairs.

But we look the other way as they pursue odd calming repetitive activities that merely soothe, even though when overdone, lead to really problematic behaviors. For Will this is disrobing, and for Jeff, albeit a long time ago, was self-injurious picking at hang-nails or moles until they bled.

For Jeff his stims are an OCD-like realigning the way Kleenexes pop out from their box, or racing across the room if the garbage cabinet drawer isn’t perfectly closed. Or grabbing a napkin to hold in his hands while he stealthily rips tiny balls of them to hold between his fingers. Or crooning babbly words, inventing a vocabulary to new tunes that make me laugh when I wonder how he possibly came up with these sayings. Or dog-earing my now laughably ancient Gourmet Magazine back issues, tossing them willy-nilly on floors and counters.

For Will it’s perseverative water play – running water and rinsing his hands for minutes at a time, then dripping a trail of water across the first floor. Or wearing socks from the orphan basket on his hands, and sorting through them as if there were hidden snacks to be found a the bottom. Or blaring video models from his iPad without his Airbuds on, so we all get to enjoy about 30 repetitions of the 4-minute tape of his sister Jenn saying Hi at Xmas – or the tape of his helper Vickie teaching him to fold a shirt. Or pushing dog-eared phonics cards into their box.

God only knows why these particular activities collect the guys. Sometimes they want music in the background during these morning reveries. So we play Soundscapes or a similar blanket of calmness from the cable TV music channels – tunes I can still allow me to think and create unlike rock and more upbeat tunes that unfortunately confuse my brain-lanes.

Meanwhile in our new normal while the boys stim the parents triage work, maybe do a fast surf of Facebook or scan the day’s pushed-news headlines on our phones. I usually thrash the piles of yesterday’s newspapers to find the To Do notepad where I scrawl reminders, which sadly gets lots or forgotten half the time in the craziness of the new schedule. Or I write, usually feeling guilty about having needs that divert me from Momly devotion, while intellectually knowing without it I’m like a soured apple hidden too long in a far corner of the fridge.

This particular Thursday, stim time was more like 3 hours with a work deadline. Glancing at Will, I saw his confused, I’m not at ease look – the one cries out, where the hell is my schedule, where’s my teachers, and what is my life. Cue the parental guilt, at other life roles taking priority. At not being one of those bouncy Facebook friends who delightedly manage 4 kids and their schedules while Instagramming souffles.

I don’t have a picture symbol card for Morning Stim, although maybe I should. The perfect mom-wannabe in me knows I shouldn’t allow it. In the new normal, I must. Yet I take heart that we’re consistent, and learning to handle free time is an important skill, too. That no one is in crisis in our house. That I actually like these people, and the strong good bones of our home. That the collective health of the family unit – including my own – overrides some dusty prescriptive ABA must-do textbook. Most importantly, that the new rinse and repeat cycles we’re establishing – all of us here in this house, together – is perhaps the most important Meyer-Johnson schedule strip of all.

CVT Day 10 – No Words

(busy work day, so no fresh writing today – just a classic post on the behavioral talking that’s we’re revisiting as Coronavirus upends our days and forces us to find a new normal.)

Maybe he’s indigested. Or bored. Maybe his soul is pained, crushed, and the only way he knows to show it is to pace, or soothe himself by sorting phonics cards into a blue plastic box over and over, or piling everyone’s folded laundry into his drawer because disorder drives him nuts.

He’s always in motion. His whole life. The cyclone inside him builds when you’re not looking, then uproots up our house entire. All a mother can do is hold on, and pick up the pieces.

And now, at age 26, at 3:15 am, his feet start their talking – and his brows, and the one-eyed squint where he thinks I can’t see him. No words. He has a few, but why bother, he must think. Words are such imperfect levers for grabbing the heart’s desire. I can feel him hesitating outside the crack in my bedroom door, his gaze burning through the night. He starts out quietly, sneaky, but every sinew is poised, ready to see if he can get away with it. Why tonight? Why now? I worry that he’s pained, but then I feel the twinkle in his eye through the sliver of hallway light, that impishness he’s never outgrown.

A mother’s work is never done, I know. It’s 3:15 am and he’s still not asleep. I didn’t hear the grind and roll of the automatic garage door opening, so he must still be inside. Is he thirsty? It couldn’t have been my homemade meatballs, or the diet breaded eggplant I so masterfully crafted to soothe his cravings within his Weight Watcher points tally. They’re a crisp bit of heaven that says “Mom triumphed! She can tame him, and herself too!” It’s my illusion, but I have to hang on to it. I have to pretend we can all be happy when feet and hands and brows replace the sound of his voice. When motion is his paragraph. When I ask “Are you all right?” sixteen times, and all I get are rote “Yes,” the same as if I asked “Did you kill your brother?” or “Do you like calves liver?”

It’s too quiet. In yet another admission I don’t run my life, he does – I pad down the stairs. Maybe he’s pop-topping the microbrews in the refrigerator again, enjoying the whoosh! of their spray like the 5-year old he is inside. Or maybe he hates his life – the maddening repetition, everyone structuring him. Maybe he knows the lie of it all – that those paid to help him sneer, treating him as a less-than, resenting that they can’t find a better job than guiding a man-boy. Maybe his turbulence is pain I can’t see, can’t feel, and he aches because he can’t tell me.

As I near the first floor landing, he rounds the corner, water cup in hand, smirking, looking tired. His eyes soften seeing that I’m not mad at him. Maybe he knows I love him, endlessly. – Maybe.

CVT Trail Day 9 – Five Ways that Parenting with Autism has Prepared Us

Even in our pandemic’s uncertainty, we parents have an edge.

A blazing sunrise like this might be a coincidence, or if you’re like me, you might see it as a sign. That there is still beauty in a corona virus pandemic. That there are still surprises, and plenty. That none of present insanity makes sense, and yet the outpouring of spontaneous goodness affirms the goodness in humanity, and will change us all.

Can you can tell I just scored a four pack of toilet paper?

Perhaps if you’re a parent of a special needs child like me, you feel it too. That random epiphany that the journey we’ve been on for years has prepared us for this moment.

I realized as I veered the car away from my usual path, and indulged myself with the long way home, hoping the twin wonderboys were sleeping – that I am ready, even capable, of managing work, kids, an unwell husband, and a lack of respite help for when my sons dash in front of cars or claw fistfulls of my homemade bread loaves while I’m in the bathroom.

As parents of kids on the spectrum we’ll all endured everyday moments of hell. Umpteen repetitions, ABA interventions, failures and getting-ups again that each of us endure in parenting a kiddo with autism uniquely prepared me, and you too, for this moment. In my case it was the fecal smearing years. The taking a bite of someone else’s cheese sandwich while walking across the restaurant to be seated years. The four toilet accidents in an hour years.

We were handed a crappy lot, and figured a way forward, at whatever measured a pace. We found amazing helpers and friends. We made the sweetest lemonade from lemons that many thought were losers.

Now, in this insane moment of time, we have well-honed skills that give us what we need to thrive – skills others may not have yet. I’m grateful for five teachings that my sons gave me, as I was trying to teach them – teachings that during sunrises and smiles, I know I have – and will carry all of us through.

  1. Resilience. Much as we embrace more rigid structures than parents of typical kids, we also learned to watch for curveballs, duck and run at times, but how to find a clear path, and change so we navigate a clearer path.
  2. Repetition. Mind-numbing, screamingly boring, I can’t stand it any more practice of the most minute skill until you think your skull will pop. Because who knows if 149,000 trials of watching your child struggle to tie his shoes, were what allowed him to win on trial # 149,001.
  3. Seeing the win. We claim success in the most laughable places. We see the veins on the leaves of the trees in the forest, and celebrate each one as if it were the only.
  4. Humility. My house is cluttered, I hate dusting and COVID-19 cleaning makes me crabby. I’ve tried a ton of dumb ideas in the name of growth and when I’m tired I’m a massive PITA. But per #1 above, like fellow special parents, I get back up and at it.
  5. Love that conquers. Despite their many challenges, my guys (and my neurotypical, other type of exceptional gal) know I love them. I see it in their eyes – in the times they do what I know they hate because I asked them – in random smiles over something I never knew made them happy. Love may not be enough to neutralize the corona virus in a test tube, but in the laboratory of life – it’s all we need.

CVT Day 8 – The Real Gift

Seeing beyond is the takeaway of our times.

It wasn’t the day I wanted for the boys, but it was abundant beyond measure.

Celebrations under Coronavirus are markedly different, like everything. Stripped to its bare meaning, we’re offered a strawberry reduction sauce, not just a strawberry – simmered until it’s a fraction of itself and yet oh so sweet – even better.

Day 8 of our CV trail brought the guys’ 26th birthday. The family traditions continued – a birthday sign, special breakfast (cornmeal waffles), cake and restaurant meal for which they poked at their AAC software to make a choice for hours – of course, each one wanting something different. Would it be both Outback Steakhouse AND Chinese food? Or could we ask enough time that someone traded camps?

I bought balloons, two bunches of three each, which was reduced to one when I opened the car door and a bunch joined the blueness of the sky the other day. I was lucky to get them at all. The party store cautioned I’d better buy them in advance, as they doubted they’d be open much longer under non-essential business closures.

Jeff rocked the bday, loving hats and so preciously delighted by small things. He beamed from the soul over the small thing. Chipotle wraps for lunch. His balloons whose strings tripped him as the walked through the kitchen and made hims giggle. Birthday songs.

Will unfortunately showed more wear and tear of recent times, and I struggled to find his smile. Not a fan of hats, I bought him a garland of silly bead necklaces, which he sort of tolerated. I think he was living for the food treats. Aren’t we all?

The day’s real gift arrived at 5 pm, when their sister Jenn and boyfriend drove the 90 minutes from her home to make sure the boys were honored. Waving at each other across a closed back sliding door, they hoisted brightly-bagged presents to be left for us to get later, which of course were perfect, and shouted well-wishes through the glass. We lit the candles and sang Happy Birthday across a door, pulling out the fat numeral 2 and 6 candles so the boys each could blow them out several feet away from the cake.

Will has always loved everything about his sister – her room (perhaps because there might have been hidden candy troves), her voice, her caring. He replays videos she’s made for him on his iPad endlessly. We videotaped our birthday song, and he’s played it ad nauseum ever since. As I looked over and saw his smile during one of these, I knew there was a hit of a present given.

Because Paul is unwell, we’re being ultra-rigorous with quarantine tactics, even though he doesn’t have COVID-19 symptoms, and failed the CDC screener several times so we know he’s not at serious issue. I’m the only family member for car trips to stores and restaurants, he wears gloves all day that we washes nightly and sleeps/bathes in his locked room. We didn’t want him any contact at all with Jenn, other than fond waves. But she absolutely needed to savor this birthday.

Before she left I sliced sloppy triangles of cake, wrapped them and ran out the basement door and perched the cake atop her car roof. She and the BF emerged from our porch to see it, laughing as freshly fallen snow lay like powdered sugar. My own best gift was that they lingered, a safe 6-foot distance, with under the garage door jamb and the poor BF in the driveway practically soaked by fresh fluffy snow. Its whiteness gave him a laughable fuzzy cap on his black hair. They must have been freezing, yet I selfishly didn’t want to let her go.

It wasn’t the birthday I wanted for the boys. The mounting snow on the roads made it impractical to buy a Bloomin’ Onion as well as Lo Mein, so Will had to defer his choice til tomorrow. None of our favorite local Chinese places were open so we had to go to the marginal one. The cake was from the supermarket, not our favorite bakery. I swear my waistband was tighter. I hadn’t had time to load Jeff’s gift (an iPad) with more apps, and Will got a more meager set from me since the stores for what I wanted for him have been closed.

No, it wasn’t the birthday I wanted. And yet it was abundant beyond measure.

Corona Virus Trail, Day 7 – Seven Wins for the Week

The thoughtful GratiDUDE blogger on Medium, a lovely man in my writer’s group, and his focus on gratefulness as a cleansing life path reminds us that any journey can bring joy, even mine in parenting twin special needs young men through these challenged times. As the sun shone on Day 7, I reveled in the gains of the past week – tender green shoots of better living.

1). It’s spring, and everything’s growing. When “hiker stay home” sentiment thwarted my plans for a trip to the mountains – multiple doctors stressed the lack of capacity in the two White Mountains hospitals, given the area’s already outsized Coronavirus incidence – we made our own Dunkin Trail. Amazingly it was only 2.7 miles/5.4 miles round trip to cold cubes of reward. The forsythia were blooming, we added variety beyond our usual 2.4 mile circuit, and my guys did fabulously walking the sidewalk along a busy town road. The success opened the door, or maybe just my mind, to other local walks we can take to take-out/don’t eat in facilities with bathrooms (the latter being a linchpin for us).

2) My guys have strengths – lots of them. From where they stand on more profoundly affected end of the autism spectrum, Will and Jeff actually are quite patient and wait with more patience than most typical kids. Being a identical surely honed this; someone else was usually demanding Mom at the same nanosecond. Thankfully the skill remains. As I groggy-woke today across the house from yet another essential nap given my nighttime sleep problems, I heard the hubby reading to Will, as Jeff sat nearby in his favorite chair – the one with the pillow saying Family.

3) Practice brings progress. It’s only been a week and tiny buds of improvement are emerging in the five ADL goals I set last week. Wow!

4) We’re given raw materials, if we see them. Our daily walk on the 2.4 mile circuit near our home passes our church, which is open til noon. I’ve visited every day, soaking in the quiet, making the boys recite the Our Father, and remembering the spiritual foundation that sustains me more than anyone knows.

5) It’s OK to be a mess. Sadly I don’t live in an Andover house with an Andover life, though my perfectionism tells me I should. I’m struggling to complete essential work while faithful to my more important role as Life Skills Director for two men with next to zero respite help given the hubby’s illness. But Coronavirus has inspired both greater disinfection and neatening – and acceptance that it will work out.

6) We have abundance – in my overflowing La-Z-Susan pantry cabinet, in kinds neighbors and and friends, in eyes newly widened to experience the best of this ridiculous time.

7) We’re an incredibly family. There is no one else I’d want to hold my hands on this journey, with Will and Jeff astride, Jenn at my heart, and Paul at my back. There is nothing, nothing we cannot do.

CVT Journeys, Day 6 – Mom’s Sanity Song

Sing it with me, Mamas:

Oh where, oh where has Mom’s sanity gone?
Oh where, oh here can it be?
Daddy’s sick, and Mom’s doing everything
Oh where’s the new path for me?

The guys are squirrely and I can’t sleep
Three hours isn’t enough
So my young men have to sit tight, and wait
So Mom can nap and stay tough

Thank goodness sunshine has wrapped the skies
Our walks enliven the view
Even though we’re not in the mountains high
Our cul-de-sacs have to do

And Facebook – well, it’s a love and hate
You hug, yet made me feel sad
I can’t do the many things others can
And right-wing rants drive me mad

Like those idiots who deny this all
They yell “Conspiracy!”
Special parents like me are going nuts
Yet others swing at the tee.

For now, I rest while my guys do sleep
I feed my brain and breathe in
Tomorrow will be a gorgeous day
We’ll hold hands and make it a win.

Corona Trail Day 5 – A New Song

If our times call for a new anthem, this unlikely composer has it.

Jeff shares a mellifluous pre-shaving ditty, while Will echoes from his room.

My Jeff sings and sings. In perfect pitch. So genuine. Moving. He’s crooning his “Coronavirus” special today, begun after our daily reading of that lifesaving Flipsnack social story from the Illinois Autism Society that’s begun our days lately. Like a flowerbud you’d look at and think was a weed until you looked closer to see its beauty, he sprouts so many timely learnings.

Like his tune snippets – sing-songs where he picks the latest words floating in the air, and mashes them anew. “Dance party,” to the tune of “Edelweiss.” Post-breakfast, it later morphed to “it’s your favorite oatmeal.” Then “go in the sinker” which I think relates to soaking breakfast dishes. Then the Happy Birthday tune sung to “I love Jeffy I do, I love Jeff-er-y Q,” a classic now oft-repeated to promote a full 20-second hand washing. It’s as if he grabbed whatever word was left on the grocery shelf and whipped it into a creation of wonder.

Aren’t we all singing a new tune these days.

Day 5, a Friday, had its moments. The hubby’s stomach bug lingered, and while he emerged from the bedroom a few more times, his MO was to stay up for 30 min, then back to bed. Consequently yet again I got about 15 minutes of productive work time. I still flabbergast at how the simple ADLs of the boys’ daily routine consume an hour or more – showers, lunch, cleanup. The yoga I need for increasingly achy joints seems a laughable goal, unless I consider incorporate cardio-enhanced jogs up the basement stairs to chase young men out of the refrigerator in the middle of a Downward Dog – which frankly I just might do. I haven’t slept a full normal block all week. After each post-prandial cleanup, the Mommy wear and tear shows and I usually need to sit down and catch my breath, until inane Facebook posts make me angry and I have to rejoin the real world.

Yet by 5 pm on this day – having done a 2.4 mi walk, a virtual dance party which Will is really loving, and a quick trip to the Dunkin Donuts drive-through to celebrate Free Donut Friday – I had hope the boys had better selves. I needed them to sit while I scrubbed the floor in between making fresh scallops and roasted brussels sprouts. Surprisingly they delivered, sitting bathed in sunlight in our three-season room while I worked in the kitchen next door.

By 8 pm after Dad came and went again, I needed the boys to behave because I was spent and not in the mood to chase them out of misbehavior-land which for Will lately is either flooding bathroom counters then placing his electronics or books in it – or blaring Raffi tunes from his iPad while I attempt to listen to something else. Thankfully Will put down his iPad in the living room and joined us in a La-Z-Boy chair, actually watching TV for almost 10 minutes quietly and calmly.

Suddenly Jeff’s sing-song united us like a mantra. Truthfully I can’t remember the words he invented right then. As if words matter in times like these. In a common family room on a pinprick of the earth, we were a trio of misfits – two young men whose neurology precluded normal language, and a mother of questionable finite impact on the earth, who never finished the Great American Novel, who struggles – although like Arwen, I hear the breath of “there is still hope.”

We sat blessed with health and abundance and rugged purpose, breathing deeply ahead of a rest before a day of forecast strong winds and sunshine. Not merely singers, we ourselves were the song.

Corona Trail, Day 4 – Man Overboard

Locked in the house with rain obscuring the sun, my co-pilot tipped off the family platform, and I teetered to right it and us. What the ****?

How dare the gods of Corona virus! After so rudely bringing rainy skies on the first Thursday of the crisis – ruining the one physical release the boys have of their daily walks – the gods struck my pilot off our little life raft.

At 8:45 am, after nursing his morning java for an hour while looking half-dead, the hubby admitted he felt awful. No fever, according to our 20-year old digital thermometer, the only one in the house so it had to suffice. No fever to the touch of his wife’s soon to be washed hand either. But he was dizzy and green under the gills. He self-banished, virtually assuring I’d get zero business-work done given how squirrely and off Will was. I couldn’t live with myself if we gave this bug to the two respite helpers, so I got to pretend I was supermom.

The bad news is yes I got zero business work done.

The good news was hidden, but there – glimmering beneath the surface. Dad appeared to have some GI bug and never developed a fever. I never felt so glad for a throw-up virus. He still worried me greatly – emerging from his room twice all day, looking awful but sleeping a ton. While I groaned thinking of managing multiple nonverbal men tossing cookies, at least the hubby didn’t spike a fever, or show other Coronavirus affect. Although I came to check on him at around 6:45, and exhaled relief when he stirred as I opened the door.

The men and I survived. I may get canned by my work friends, and I’m perpetually amazed at how long it takes when I force the boys to be independent at bedmaking or table-setting or skills we’ve been working to develop for 10 years. Surprise, I barely got to any of cleaning and neatening chores on the voluminous Get Ready for the Remodelers list. With each passing day I see a crisis unfolding because I have til Monday to clear out two bedroom closets, including my office with 27 years of whatnots preciously saved there. The pressure clutches my throat when I think about it too much.

Yet at 4:00 pm we had this blissful 90 minutes where Jeff painted on the kitchen table, Will puzzled, and I navigated our happy little life raft so there were smiles from everyone. Where I took a break from worrying.

Always the eager helper, Will helped me sanitize and vacuum one room in preparation for the big upstairs cleanout.

We’re eating well – homemade pizza with full-moons of ricotta cheese floating on grainy semolina-olive oil crust. One spread with red-sauced and pepperoni, and my favorite, pesto with ricotta and plump grape tomato halves, a froth of melted fresh parmigiano-reggiano somehow attesting that I had it within me to make my own life raft out of little nothings.

If I look at the glass half full, it’s frustrating. With Jeff’s bed making I had to prompt 5 times to jump-start him from one task in the sequence to the next. Will’s misbehaviors are flowering like the crocuses along my back walk from all this rain. Every few hours he “organizes” the magazine that he and the staffers neatly sorted on Tuesday so that I could pitch some and save others, giving us “opportunities” to practice re-sorting multiple times a day. Since I obviously have extra time.

I’m not where I want to be with anything. At 7 pm, while serving dinner later than planned – I guess homemade pizza-making takes time, surprise – and without a hubby to help, I had to do listen-in mode with my writer’s group conference call as Jeff chanted and I supervised pizza grabs. It was yet another way I’m adrift, dipping my toe in the sea I’d rather swim like a porpoise who bobs up from the depths.

And yet, as I watched Will try a body-sock to self-soothe at night, something he’s never done – and saw Jeff automatically begin to rinse off his dinner dish to put in the dishwasher – and I felt the pleasure of orderliness reclaiming even a few rooms of the house – I knew I’m exactly where I need to be.