Monthly Archives: May 2020

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.