Monthly Archives: April 2020

CVT Day 35 – Shaping “Bad” Behavior

Sunday, CVT day 35 could only have gone up for Will, given Saturday’s day-long disrobe fest and at least 5x of trashing his drawers and Jeff’s in a furtive search for Pants That Feel Good. I took brilliant sunshine as a sign. At least the weather would let me deliver what he loved – a walk to a Dunkin Donuts iced coffee – and a semi-structured agenda between church and chores that could gentle encourage him toward normative. Whatever that is.

What’s normal pant-wearing for a 26-year old profoundly sensory-challenged man in a pandemic?

It’s hard establishing “appropriateness” for any behavior for those who are unfairly challenged. I don’t live in his skin. Why at age 19 did underwear become a non-starter? Why did waistbands need to swim far from his midsection so they didn’t touch? Why a kid who aged out of sensory integration therapy at age 13 suddenly had an explosion of it that dominated his life, and certainly my attempts at clothing him?

Our family rules pre-pandemic were made easier by daily out of the house schedules. Rise at 6:50 am, day program bus at 7:30 am, home after the day, change into shorts from long pants if we weren’t walking outside. It was fine.

Pandemic life however has meant Will wants to sit around in silky boxer shorts all day long.

In the past I’d be grateful his junk wasn’t showing, or that he was parading around upstairs buck-bottomed. Yet as pandemic life drags on the we look at potentially months more of house arrest, I have to draw the line. My new rule is that silky boxers are OK first thing in the morning when you come down from your room, but after shower and daily routine we have to wear long pants or shorts. At night after dinner I try to be flexible but when he’s hanging out in the family room with the rest of us, it does not feel right to me for him to entertain us with Kohl’s finest red hot chili peppers on a black background. Or royal blue paisleys.

He’s resisting, particularly on days where I can’t deliver the walk I promised because it rains. Where I sleep because my insomnia catches up with me and I can’t read more than one newspaper article on the sofa before my eyelids close and slumber wraps me.

Will’s also back at emptying drawers, including Jeff’s in some form of search I guess for either hiding pants he no longer wants to wear or asserting there is nothing in his drawer he likes – because there’s nothing in his drawer. He’s also massively “reorganizing.” Order-seeking behavior when life is disordered? Devious annoyance for his mom whom he knows will blow up when I see this despite my efforts to understand and be calm, since I have no idea if the overflowing dirty clothes hamper is truly dirty?

Such Will from this Will. – But the happy news is we made it. CVT Day 5 included a brunchy breakfast of cottage cheese pancakes, a shower, watching Mass on TV from his recliner chair, then a fabulous 8-mile walk – our usual 5.8 mile round trip to the Dunkin’s, plus 2.2 of a hill overlooking it where new condos with a pool at a view reminded us that single-family Colonial with a grubby lawn the neighborhood turkeys love to de-grub, and a swimming pool we have to clean, is not our only option.

When we arrived at home, our daughter whispered two words of joy in the boys’ vocabulary: Ice Cream. She loaded them up in her car after ordering frozen yogurt at one of my favorite joints, allowing me a blissful hour to take a yin yoga class. Deep stretching for 2-6 minutes per pose was the cherry on top of the day.

I watched the boys return from the ice cream run while prone on my yoga mat. I suspected there would be more pants-disrobes and drawer trashing to come, as night suggested silky boxers, and I tried to hold firm to the no-underwear-downstairs-during-the-day rule. I debated about how best to support this – social story? video model? – whether it was fair, how best to reinforce correct performance. – No matter. The look in Will’s eyes suggested we have a relationship, that today was not the end, and yet -. And yet.

Some days it all comes together. Today yesterday reminded, gave new trails, and smiles. Tomorrow beckoned. Today was sunny with abundant pants. I’ll take it.

CVT Day 26 – Like a bolt in the night

We’re really OK, I tell everyone. Yet in the land where behavior is communication, there’s far more I can’t see in my challenged sons.

Mon thru Friday seemed fabulous I thought on a Friday at 6 pm as light faded to gauzy dusk. My guys showed a glimmer of recognition when watching their day program staff on our big screen TV during our Zoom remote learning sessions. My heart leaped thinking they might understand what was going on. At morning meeting Will accurately answered “what month is it” three times in a row. In the afternoon Jeff imitated arm circles while watching a peer do them on the TV – a huge leap for him – and showed promise in understanding the difference between marching, kicking, and jumping.

With Easter upon us we baked treats for our two support helpers. I tried not to choke up in thanking them for proving just how essential they are to our family.

On top of it, the hubby’s tenuous employment – for no explained reason he didn’t get a paycheck last week – appears to continue. The bank account showed his weekly amount, and his online dashboard restored him to Active status. Whew. The layoff he was told to expect last August looms, but dodging the bullet another week gave ample cause to open a bottle of red, my first time drinking in two weeks.

Mom of special kids simply cannot make the mistake of sleeping.

“Did you know Will bolted outside ?” my husband said, rousing me from sleep at 11:45 pm. Apparently I made it til 8:15 pm in front of the TV.

OMG. Apparently the hubby snoozed TV-faced just like me. At 10:30 he went to check on the men and found the front door ajar,. The foot-carpet was askew far away and the storm door in front of it unhinged from its lock. Either the HVAC contractors who were here on Wednesday left the deadbolt unsecured, or we goofed.

Hubby ran up to search for two bodies in their beds. Fortunately the men were sound asleep. My mind’s eye flashed to them, Will chewing his comforter with his recent oral fixation, Jeff cheubic- faced in PJs with the shirt on backwards.

Whether Jeff pulled Will back into the house, ever the hovering little brother – or Will departed and got bored, returning quickly – we’ll never know. The bigger and always unanswered question was why. Why does Will’s flight response activate? Because – his mother sleeps? Because he can’t cope with an hour of unstructured time at the end of his day? Because stimulating, engaging activities for him are depleted?

Or is there a thrill to self-agency in a pandemic – asserting the power of the soul in the night.

For the rest of the night and the next day, I kept wondering where he was. Is he safe. Is he happy. Then the corollary. What about me. I failed. Can I ever really keep him safe. Am I allowed a glass of red, a minute to write, reading just for pleasure. Or was the lesson that I’m meant to trust the Universe will help us somehow – when night seems impenetrable.

CVT Days 22-25 Zoom Zoom Zoom

The sun always shines – it’s a metaphor, and far more. Our Monday, Tues, Wed and Thurs of Coronavirus Week Three saw our first full week of remote learning from our day program. Loosely structured, we do 2x/ Zooms – a morning meeting, and an exercise class, with purposeful, fun activities in between.

Structure! schedules! sanity!

Both group Zooms are wonderfully facilitated by the staff, although the boys need 1:1 or close to it support to respond to questions relating to time – what did you eat last night for dinner? – and to imitate exercises. Thankfully since repetition is our savior, the format is working.

Although it makes me feel guilty – that old tape of Mom always has to super-structure and direct their moments toward learning – we allow the boys an hour or two of unstructured “stim time” as both parents triage work and answer essential emails nearby. We push independent ADLs like toothbrushing and bed-making with minimal assistance. We facilitate a shower, maybe fit in a lightly guided activity, and greet our most wonderful two helpers who arrive to support Morning Meeting.

As weather supports, we segue usually to a walk for Dunkin iced coffees, as part of our 100-mile challenge. That’s one of the most superb activities of this time. It’s only day 12 and the guys are at 40.8 miles!

My lead helper, an OT assistant working on her OT license, always comes with crafts and fine-motor building table time activities. Then Exercise Class, and free time as Mom and Dad do more emails, and we transition to possible additional neighborhood walk, and help with dinner.

Autism, at least our variant, demands overt structure and consistency. I read so many heart-rending accounts of kiddos who aren’t adjusting, and are in such pain, and even bridge to self-injury because they can’t make sense of these unnerving times. None of us can. I pray for them, and I give immense thanks to the universe that somehow, we are balancing on this tippety ship through newly charted waters – and lifting our faces to be kissed by the sun.

CVT Day 21 – Virtual Church

When you can’t go to church, there are advantages to church coming to you.

Don’t tell anyone, but a key advantage of Mass attendance is white space in the margins of life for the mind to wander and multitask. What other better use is there for the weekly bulletin than a grocery list?

When I was bored inside churchly walls – I suffer from contemporary ADHD, brought on by too many short Facebook posts – I’d sneak my pen out of my purse and scribble Must-Do’s while the priest intoned something probably of great relevance. I’d write words that resonated in a hymn onto the insides between the ads. Just like my own life where moments of meaning get squeezed within columns of work-lists, I’d exhale, and what I was really feeling would emerge. I’d be grateful in that moment – for that moment.

Today, as we gathered around the electronic hearth, especially given related to our parish priest “live” on our big screen TV – I felt a rush of the same ease at being able to sit in my PJs, and run back and forth to the kitchen, to my notepad – to relaxing in the way I do here.

This Sunday in particular, the ease was welcome. Given I was cleaning out two closets, we said the Gloria and Apostles Creed surrounding by stacks of old IEPs and receipts. No offense to Palm Sunday, but I was secretly over the moon that I had time to fill out reimbursement forms for the boys’ care during the homily. I sorted old MassHealth forms into Keep and Discard piles. Will moved seamlessly from bathroom to La-Z-Boy, Jeff sang ditties to himself based on words from the mass, and Paul – well, he slept. I kept rising and dusting flour onto my evolving Sourdough Fig and Walnut loaf, whiffs of its musty wonderfulness reminding that old doughy bits can elevate simple bread to something heavenly.

At last week’s church service, Will seemed indifferent at first, until it was time for the Eucharistic player. Suddenly a bolt of recognition veered his eyes to the screen, and he had rapt attention for the entire rest of the Mass, even singing “Jerusalem, Our Destiny” for the next hour and a half. It was genuinely moving. Yet another example that he knows more than I give credit. Maybe that easy comfy chair was his best multi-tasking worship seat, too, as he sat stretching orphaned socks on one hand, and sorting his beloved word cards as he watched, while Jeff chanted ditties he made up to a word in the sermon.

I often wonder what my guys think of their changed world in these bizarre times, where we’re locked out of the church a mile away and have to watch it on TV. We’ve read their Coronavirus social story so often they know it by heart. When I begin with “it’s a coronavirus time. A coronavirus is a _______________________,” leading with the expectant pause, in nanoseconds they fill in the black with “a germ.” When I say, “Germs make us___________” – “Sick.” “We dont’ want to get sick so right now, there’s no Opportunity Works. We have to _______________” “Stay home.”

Of course rote repetition is not the same as understanding, or acceptance. I’m not sure I’ve achieved either, nor will I.

So on Sunday mornings when who we are and who we want to be comes into focus perhaps a little more, we grasp our pre-Rona routine however we can. Morning writing and breadmaking, for me. Church, with its calming repetition of prayers and ritual the same in our family rooms as near the altar. Baking cookies for treats after the day’s Chores and Fun list is done. Reading books in bed with the parents at night, with two overgrown five-year olds squishing two parents in a queen size bed – as doe eyes hand me a book, and trust I can unpack more than words.

Maybe that’s the lesson of these days anyway. Being. Being together. A bond that doesn’t need a building, or an activity. A hug that wraps the soul.

CVT Day 20 – Dust of our Days

Being Saturday, the morning ease was like soft bread dough – elastic -springy, so the finger-poke rose back, as if to say Don’t Discount What’s Inside.

The boys rose later than usual, and we all sat rising the easy warmth of each other’s presence. I sat in the living room, back-buttressed with stiff pillows, loving the morning light and time with my words after mixing two loaves of homemade bread and tucked them into the proofing oven. The boys plunked themselves into the La-Z-Boys across the kitchen to family room in the far side of the house. The yeastiness of bread in the making blanketed us, breathing Home and Comfort.

Paul slept late, padding downstairs bleary-eyed while I stole a few moments to read and write before the day’s inevitable: cleaning two closets, my office and my daughter’s. Avoidance was no longer an option.

The neighbors may look askance, and the social distancing zealots on FB will scorn me. But we decided to proceed with an already delayed home improvement involving 3 days of contractors displacing us from the upstairs. I’d dreaded this day for two months, so was feeding myself well this morning in advance of the onslaught. I worried less about the social distancing – the doors and windows were open during their visit, we were distant in the house and vowed to wipe down surfaces after they left. Unpacking 27 odd years of treasures tucked into corners, shelves, under beds and inside rarely opened chests would be hard.

Even harder will be the throwing out of anything with a memory, particularly that of touchpoints where maybe I could have made different choices. Bending down to unclog the vacuum, I lefted a cloudy photograph, dulled with time, of a twin stroller with Jeff and Will seated, smiling, both looking at the camera which is a rarity – Jeff cherubic as usual, and Will with that impish, “you better watch me closely” look.

Could I have intervened right after age 2, when it all went south? Is it my fault after all? Was I working too hard, distracted, swallowing down the failed developmental milestones as I listened to the voices that said boys are slower, twins are slowing to socialize and communicate?

I put the photo on my VariDesk, a fitting location as my self-forgiveness rises and falls like a wheel, like some non-sensical phase of the moon. Pushing two boxes of old photos of the me I used to be – the men that used to be – and the family that is now, I let the vacuum suck away the cobwebs and the regret, like so much dust. After all there were times to simply clean up, and not think about what you might be throwing away.

CVT Day 17 and 18 – Remote learning

Our bubble burst in the best of ways today. Will and Jeff’s day program began remote learning via Zoom. Yes!

Supported by my bestest two helpers, the guys attended Morning Meeting first. Typical day and date orienting – today is _____, the number of the day is __, what was yesterday, what is tomorrow. Season. Weather. What do we wear.

Will’s mesmerized by the same image on the laptop as on the screen. Jeff’s attentional challenges meant he needed lots of redirects but eventually seemed to understand.

As always spending time with the guys gives me a new perspective. On their profound communications challenges. Their very light vocal volume, which complicated Zoom’s sharing hard-won expressive language with the day program staff. Their auditory processing, always delayed. Mostly I was stunned at the complete lack of visual supports offered by the staff. True Zooming is foreign to both teacher and learner, but the experience stirred the usual Bad Mother feelings. Have the staff been this clueless as to Will in particular and his far greater capabilities when presented a picture symbol?

Dashing upstairs to retrieve the iPad with its TouchChat software, I started prompting the guys to use the device to speak words. To enable louder sound but mostly to prompt the dialogue and speed communications. We quickly supplemented it with the usual Velcro-backed picture symbols, which also helped.

His bean-bag chair tuffet a point of safety, Will stared at these people he knew on TV, and I could see the wheels turning. Jeff was silly and more amused – one of his staffers was there though his face was smaller on the screen. Regardless it held promise.

The rain let up a bit even though the clouds mostly obscured the sun through the slivers of casement windows in the basement. Spring is here, and all green and growing things are face-up to find the sun.

CVT Day 16 – Thanks for your smile

Simple words of kindness remind us of what our challenged kids already know.

I didn’t know what to expect, so I steeled myself and left early. Senior status has its privilege, with early morning grocery shopping ahead of the crowd. Yesterday’s further restrictions on store crowds and social distancing enforcement amped it up. Today at 6:10 am on a weekday, the parking lot of my local Market Basket looked like Thanksgiving eve.

As usual lately I thanked every clerk I met for working. I meant it. I’d heard this local chain was providing 10% hazard pay. I actually wondered if I might buy $10 gift cards and hand them to random clerks on my next trip. These people deserve triple what they’re getting for putting their health, just to assure our little family unit has ample iceberg lettuce and toilet paper.

As I left, an older clerk pushed a block of a dozen or more shopping carts into the entry door. “Thank you for working,” I said.

“Thank you for smiling,” he offered.

Tears started, and I felt stupid for being such a sap, yet moved. We think we’re alone to fend for our needs. Yet a web of often invisible strangers sustain us with simple acts like making sure we have a grocery cart, or fresh milk, or puzzles shipped to our bored kids in COVID lockdown, or likes to our Facebook pages that share silly triumphs.

We’re especially sustained by angels in our lives, like the two support staffers who still arrive daily to work with Will and Jeff, while I work, clean and manage their healthcare. Like my daughter, who finds time to pop her head up for a Hi every day. Like my mother and friends who phone or text if I haven’t gotten back to them lately.

More than anyone knows, we’re sustained by our special kids. By the way they enjoy something simple, like Xmas music played in April. By the way they try to do something hard, just because we asked. By the way they’re putting up with house arrest, car trips to restaurant pick-ups not eat-ins, hikes on asphalt flat lands – and by and large adapting. By the way they rise in the morning to find me doing yoga in the basement and simply sit nearby, knowing this is where they are most loved.

At night, when I’m dog-tired and my To Do list is longer than when the day began, it’s easy to forget. Present times have challenges and uncertainty galore, but my special sons gave me the best they had today – their smiles.

CVT Day 14 and 15 – Living Small

The parade of tiny victories propels us miles forward.

The face of progress.

As coronavirus days wash over our heads, moments both brilliant and dark just a watercolor brush of time – and as work so rudely intrudes on my new role as home-day program director, maid and wannabe writer – the triumphs hide in plain sight.

Will independently got his entire cereal breakfast today. Cereal, bowl, spoon and milk. At least 10 years in the making. Thousands of repetitions with dozens of social stories, picture symbol strips, light boxes, video models, coaching from helpers and parents On April Fool’s Day – no joke! – this man-boy showed he has it in him.

Should we be thanking our Coronvirus altered days for forcibly removing prompts and driving independence? Should we thank this blog, for the times I’ve been writing instead of hovering anxiously atop him, and thus forcing him to find ways to recreate, however altered from a neurotypical.

I say we simply celebrate. That every human has the potential for growth. That pandemics have a blue, if not silver lining. That parents can have a life, and loves outside their kids, and the space to grow them, too.

That the sun will shine, the challenged can succeed, and the world’s vast potential lies within us just waiting to be freed.