Mom comes first. No matter what.

Day 2’s euphoria at having help and watching my sons thrive under the loving care of others dissipated into reality. My sons are squirrely, their misbehaviors appear around 4 pm – Will disrobes, Jeff, well, the hands get way too busy where they don’t belong- and my demons whisper that I’m not good enough at any life role.

I vowed to make a change on Day 3. I put two important feet solidly on better ground.

Firstly I wrote in this blog. My new rule is that work writing doesn’t count. Even if zero humans read this blogly screed, it’s like yoga. My words float to join a giant Om chanted by thousands of special needs parents. Like me, we’re trying hard to make it through unchartered waters. CalI me crazy, but could feel their gentle vibration throughout my day. Telling me I wasn’t alone. That I would make it. My sons would make it. Indeed the world would make it and we’d all grow phenomenally from even the uphill slog days on this shared trail.

Secondly I booked an online fitness class at my daughter’s studio, replacing my usual Wednesday night Pilates class. Those who know me know my daughter’s studio is pole dance and fitness-focused. Thankfully no poles were required in the class – just a yoga mat and two water bottles as weights. Also I had the option of joining by audio-only instead of broadcasting my midriff across the World Wide Web. Which the heavens must have felt was verboten since my videocam wouldn’t work on Zoom, and thus the universe was spared the sight of this mother of three’s abs.

My daughter forewarned me it was a tough class. If i was winded, probably everyone else was, too. Not to worry. Just do your best, she said.

Amazingly – I ACED THE CLASS! Me – little old me. By far I was the oldest classmate. Excepting a 4-minute bouncy cardio warmup that reminded me to watch my half-meniscus knee, the format was simply eight common yoga and Pilates moves, done for one-minute intervals each, three times in a row. I side-plank all the time, and routinely flow common yoga moves like a Down Dog into a physical mantra to match the mental one. At one point I heard the instructor commend one of the video-broadcasting young-uns for lifting her free hand as a advanced side plank variation, while unbeknownst to the class I lifting both upper leg and hand, an even more advanced variation, and sustaining it for a minute.

Day 3 gifted me with an epiphany. I am strong. I am especially strong for admitting I’m weak, and need self-sustenance, the kind words of others, help with my sons. Confession: my sons’ daily schedule strip selfishly also gives me what I need – a structured mix of work toward goals, creativity, good food, cleanup and movement. At yoga class we call this balance. On Day 3 I call it Sanity.

I suspect the days beyond may not all be so bright. In sharing with other special moms online and in a few conf calls I did, I almost feel guilty for having such fabulous help with the boys the past two days, such that I wasn’t over the edge.

The challenge for me is to remember all of this. That’s part of the purpose in being here with you on this page. Like many moms I put everyone else’s needs ahead of mine – a really stupid character flaw that easily spirals into the dark place. In being accountable publicly, I’m determined to keep my feet on the most important trail of all – the journey to a better me, the one that holds others’ hands as together we reach views of majesty.

At least there’s dinner.

Day 2 brought gifts, yet reality. The gifts are named V. and N., two amazing caregivers who willingly want to continue working here with Will and Jeff, and even increased their hours. Gifts like the hubby’s employer releasing him from office-duty and enabling him to work at home for the duration. Like my understanding clients.

Gifts like the boys’ love of anything food-related, which will carry us through the reality of this time, which hit full-force on Day 2. Gifts like a daily need to create something new for a meal, and realizing its symbolism.

I don’t know an ostensibly fine Day 2 put me into a funk by 5 pm. I should have been over the top grateful. I have caregivers, they showed up on time with beaming smiles, gave me blissful time to work in quiet, and readily embraced the new trails. We filmed a new video model of sandwich making to assist in independence building. They heard and marched alongside us with my five ADL goals for the men. They went above and beyond, as always. When I mentioned that one of the day’s cleanup options could be sorting magazine piles in the living room, it became a 90-min task that I watched the boys smile as if it was a trip to the donut store. Marie Kondo couldn’t have decluttered my living room any better – nor made the cleaner-uppers happy to do it.

Yet I was swamped by Facebook posts of all everyone else was doing, considering, and had to push away my usual hurt that they boys aren’t spelling, or reading, or proactively using words to say what they want. I wondered if other moms are better at warding off the daily deaths that come with accepting your kids’ disability at their level, and worrying if it was something you did or didn’t do that pegged their place on the autism spectrum – which is never where you want it to be.

I was distracted all day, despite the kind helper’s men-care help. I accomplished only one of the two work tasks I’d needed, albeit a hard one but I struggled to focus. I watched swells of “Masshole stay home” threads on hiking forums as well-intentioned New Hampshire hikers said those of us driving to the trails in the Whites from MA weren’t social-distancing if we stopped at a highway restroom and brought our potential germs north. If we stepped less than six-feet away from our fellow hikers on the trail. God forbid if we walked inside a take-out joint to grab and go the nightly meal. – The thought of no hiking for weeks on end bummed me out more than COVID-19 “redrum” hour that emerged on Day 2. Almost like clockwork, around 4 pm Will did his daily disrobe – a sure sign he’s off-kilter – running buck-naked upstairs in a mortal sin of a behavior that manifests when life is off- and that he kept in check on Day 1 by at least disrobing in his room.

True confession: TwinMom is not perfect. I yell when I’m mad. I get grumpy when clouds ruin my view. On Day 2 I spent a grouchy 30-min crabbing at the hubby about how I never get time for me, to write, I missed yoga, dinner interfered with the online exercise classes I’ve been eyeing.

But then there was dinner. Creative-time, if only with spinach and potatoes. Even if they’d prefer to stim, I can elicit participation from the boys in peeling potatoes and carrots, trimming green beans, and anything related to two of the most wonderful words in their vocabulary: chocolate chips. I wasted 45 minutes making a six-part grid of St. Patrick’s Day dessert choices, and let the boys select. Green beer and cute green outfits got omitted this year, but we had a fine feast of making do with three half-spent bags of different kinds of chocolate chips, improvising when we ran out of peppermint extract, improvising around the lack of the one key chocolate chip required for the recipe, and burning the first batch.

Dinner fed a deeper pang.

It was less than fun watching Will struggle to self-start free time activities, and overdo his iPad. To watch Jeff’s stealth misbehavior and know I have to spend more time helping him rediscover old passions too. To realize the many things I wasn’t getting done and no matter how efficient I think I am, there’s still more personal decluttering I need to do.

Yet for a second night in a row Will and Jeff both readily took me up on the request to get a book and bring it in bed with me for family nighttime reading. Yes we still read preschool sing-songy picture books. We’ll probably never outgrow sharks and trains and nursery rhymes. But something very powerful was happening, and I made an important vow for Day 3 – a vow that I knew could carry me through.

Renewed by mountains once more, we broke ground on a spur path off the Appalachian Trail called the CVT – the Corona Virus Trail. Join us if you’re on it, too.

Today, Monday March 16, is Day 1 on a trail we’re now discovering along with the rest of the world of developmentally disabled – the Corona Virus Trail. The world has changed. So will we.

Only one day ago I saw the clouds rolling toward us and thought they’d blow away. Canceled day programs for those challenged ones like my sons, our public library closure, a media echo chamber about maintaining a 6-foot distance and no-touch hellos. Reality hit late on Sunday March 15, as we were driving home from a stunningly beautiful hike in New Hampshire’s White Mountains. The email said No day program for Will and Jeff for at least a week.

Welcome to the day to day trek toward growth, sanity and greater purpose for our family – four of us living in northern MA, me MK the Mom, Paul the Dad, and our twins Will and Jeff with profound autism. In RI but with us always in our hearts is our other exceptional progeny Jenn.

Call me Arwen, but while I gulped hard knowing the adjustments, I knew the second I read that email we had it in us to turn this moment into our finest hour. I know it still.

My Day One reality stood deeply in the rock of the day before, Sunday, on Bald Peak, an outcropping on Kinsman Ridge in Easton NH. I hadn’t planned to be there, preferring to hike one of NH’s fabled Four Thousand Footers, both to push my physical abilities and earn bragging rights I somehow need to prove to myself I’m really not as old as I am. But the hubby wanted this one badly. He’d tried to hike here unsuccessfully two weeks ago when I was in Cuba with my mother, and weather headed him off. So the least I could do was to give him this one today.

The skies duly rewarded us with views straight through to Killington’s ski trails in Vermont. We struck a fast pace – 25% ahead of book time, likely from the perfect snow-packed trails but also because we hike regularly, and now that I’m post-five months since my leg break, I’m proud that I’m getting stronger. Best of all, the mind’s camera snapped images of the carpet of I’ve yet to tame – from Mts. Jim and Blue on the Asquam Ridge to the north of Mt. Moosilauke, to that badass Appalachian Trail section beneath N. and S. Kinsman, one I’d salivate to say I bagged – to the Long Trail through Vermont to Canada. I heard them whisper that I am more than just a mom with a plan – that the world entire still welcomes me and all the I am. I recorded that whisper, for the days ahead when I’d need it.

A kind couple lingering on Bald Peak’s ledges with us broke the social distance rule and offered to snap a family photo. Will and Jeff were their typically distracted but Paul and I beamed. We had just laid foot on a new trail, proven ourselves more than worthy, and had all we needed for the routes beyond – a map, a plan, and each other.

We especially needed that family photo on Day 1, the formal opening of Mom’s Super-Fun Autism Day Program. The men were confused. No bus to their usual day program. No helpers at home either. Bossy Mom telling them what to do. No stores or trips to the gym.

Instead, there was the familiar and I believe comforting routine we do when thrust into change.
I grabbed the overstuffed binder of Meyer-Johnson picto symbols cards, and riffled through three overstuffed Ziplock bags of them too. I marked the calendar with the day I thought they’d return to the day program, and thanked those wonderful parent groups on Facebook for sharing Coronavirus social stories, and a color-coded COVID-19 Autism Schedule as a fitting topo map for our new land. I picked one close to the boy’s knowing, and drew a we read the online PDF of the Coronavirus social story. We looked at the calendar, fingering March 16, today’s date, then flipping the page to April 7, when we likely will return to the day program if it heeds the Governor’s school closure date.

We scanned the day’s picture symbols like trail names on an old path we’ve trekked and smiled remembering. Showers, walk, puzzle and art time, lunch, cleanup, cooking time, snack, another walk, another cleanup time.

I didn’t tell the boys, but I’d set five goals for the journeys of our coming days – new buds on the springtime I knew could take root.

1. Wiping face accurately and independently after toothbrushing and eating – so they look appropriately handsome, not like silly ragamuffins.
2. Bedmaking independently.
3. Table-setting for meals independently and with greatly reduced prompts.
4. Rinsing dishes and placing into dishwasher after every meal. No exceptions.
5. Sandwich-making at home, independently – which is slightly different than for the bagged sandwich in the lunch box.

I framed the above photo from Bald Knob as my talisman. It was on top of the mental shelf as we ripped each Velcro’s picture symbol from the strip, through morning, to hairy late-afternoon, through my realization I can never accurately estimate the time it takes to do anything – through early evening when all of us sat on the couch watching CNN and realizing this was not an isolated day-hike into Corona-Land – that the crisis was worsening- and that we’d be lucky to return to our former lives on April 7.

Day 1 wiped me out. Tomorrow’s route on Day 2, while similar, would need every bit of the planning, the resilience to adjust to new conditions. I kept that framed photo top of mind if only to remember that there was a past that made us ready – and stunningly beautiful skies in the future beyond.