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.

Confession: I have a Solitaire addition. It’s my favorite guilty pleasure that I excuse by considering it an Alzheimer’s prevention activity. But really it stokes my need to solve something, anything – particularly only days where curing autism on the side of a day-job that has an increasing share of frustrations, and the molasses-poured pace of the boys’ progress make me question if we are making any progress at all.

Around noon today after a few work hassles while waiting for someone else I allowed myself 3 minutes when I should be been doing 500 other things to solve the Daily Solitaire Challenge I couldn’t get this morning. I recently changed my preferred settings to be 3-card draw which supposedly is harder. I’m still not mastering the deal, so like autism I find myself re-dealing and replaying the same hand some ridiculous number of times, like the win mattered. After repeated fails, there’s an aha! that feels sweet – a boost upon the day, and a lingering lesson that sometimes I figure out, and sometimes inspires more questions.

Last night we had a similar mini-moment with Will and Jeff attending “Rock of Ages” on Boston. The plot- sweet Midwestern girl turns stripper, sees the light and wins her man – wouldn’t have been my pick. But our neighbor’s daughter the budding actor was a lead, Jenn our daughter suggested it, so – why not?

Fortunately the bawdy body jokes and expletives flew by the boys’ language cognition, and two last-minute grabs from the car somewhat saved the day – word cards and a squishy ball. Yeah they’re stimmy toys, but in the spirit of accommodating particularly in non-preferred environments, it seemed a bargain I could strike.

The word cards worked wonderfully. Will tried to listen and the loud rock music didn’t seem to bother him, so I was able to hold off over half of the first act. When he got a bit motoric I was able to gently lower his hands to his lap and below the eyesight of patrons in rows behind us. Jeff, hand over ears, clearly was enjoying the night less, and when Dad’s verbal reminders about quiet mouth’ didn’t work in the first act, the squishy ball diminished his self-talk a decent amount. He also took us up on occasional candies and while he looked at me as odd for singing when we could – “so what about your quiet mouth?” his puzzled look seem to say – by and large he stat still, apart from some classic Jeff fidgets that are uniquely his own (ahem.)

Life must be so hard when so many environments just don’t feel right, or you’re subjected to experiences that you dread. Jeff so willingly said Yes to a play in Boston this weekend that I forgotten how much he hates loud environments. With Will, because he initially said No to going, I made a deal with him. I told him how much Mom and Dad wanted to go, that Jeff wanted to a well, and that if Will did what Mom wanted on Sunday, Will could choose the activity of the day on Monday. I also reminded him to use his words if he needed a bathroom visit or a break.

The result was – it worked. Will jumped up to attempt an escape just once, perhaps even to adjust his long pants, but that’s far better than sometimes. He actually did use his words to request the bathroom near the end of the first act and waited nicely until intermission. Despite the self-talk Jeff was manageable and both tolerated waiting at the stage door for the neighborhood thespian to emerge with the larger than life hug.

I get frustrated with myself over time-wasters of any time and particularly my Solitaire thing. I don’t understand why I cling to it, and what it gives me. I insist on ritualistic adherence to many tasks in the boys day, and often wonder if it’s best to skip it all. I’m not sure which of multiple rearrangements of the deck eventually give me a win, whether the insistence on treadmill or brisk walks with Jeff prior to speech will make him attend, or labeling family drink cups in the seemingly futile hope that they won’t steal my Diet Coke because it has my name on it let alone steal someone else’s as a party.

Yet maybe our time-wasters simply set the stage for the bigger win, like yesterday. After multiple theater-movies where I missed half the show – after the Urban Nutcracker last year where Paul took Will out of the theater at least 6 times – we figure out how to work the hand we were dealt – and had one of those happy-stances when bum neurology met the real world and life proceeded as if we didn’t have autism, or barely.

In this game of life, here’s hoping the way we play the seemingly insignificant games leads us to the bigger prize.

Hope. This image may look like just another gorgeous mountain range across a lake. But it’s my talisman of what is possible, and the beauty and peace waiting whenever the autism-life is turbulent. It speaks to turning challenge into opportunity – disability into achievement – frustration into joy.

We’re atop Mt. Shaw in Moultonborough NH, a peak on a list of superb viewpoints that we’re hiking lately. The picture was taken from no place special really – just a random descent on a lovely Sunday where the trek went faster and easier than expected. The peaks in view aren’t brag-worthy hikes that ultra-marathoners list in a can-you-top-this post on Facebook. They’re local and accessible and gorgeous, and coincidentally they’re trails we’re volunteering to help maintain.

The boys did great ascending this hike, and after a quiet period eating his snack at the summit, the real Will emerged. He jumped up with loud non-word happy noises that startled a fellow hiker talking to us but quickly melted everyone into smiles. It’s the Will that hiking brings out – whose joy that can’t always find words but who bursts forward when there’s views around and shows me that I didn’t imagine his liking his sport.

Jeff usually isn’t as demonstrative this way, nor was he yesterday, but he was soaking in the view in his own way. He’s exceedingly patient as always when I want to linger for 45 minutes taking pictures and using my new favorite obsession, the PeakAR app that ID’s the mountains in view. I love testing my internal geography around us, but more than anything I love remembering the times we hiked each, then dreaming of the next ones to bag. Ostensibly my excuse for too much summit picture-taking is to make “what did we do this weekend?” social stories for the boys to send to their day program, something I’ve done each Monday for over 10 years at a teacher’s urging. Sometimes I indulge myself in writing the names of each peak on the photo’s horizon, a probably not too disguised statement of pride on how many we have conquered. Mostly the day program ignores these, and I often question why I bother – except deep down I know why. It’s probably just as much for me as for them.

Mondays are few people’s favorite days, nor mine. But lately I begin each, no matter how busy I am with work, by emphatically prioritizing the long view if only with one action item that however small puts boots on the ground of my journey there. Autism makes our family’s days highly structured, filled with repetition and pushing others to do things they don’t want, despite perennial irritants like respite worker cancellations and cleaning up spilled milk literally and figuratively. Sitting atop a laptop pales in comparison to a summit no matter how engaging the effort, and ascending stairs for yet another pile of laundry is far from rewarding. So when I start my Monday by doing something, anything, to address my own personal goals, I feel as if I’m still on that one, continuous trail toward habilitation for the boys, and last but certainly not least, happiness for me.

Call it a Monday me-first action item, or just my quirk. I take action each morning to make my world more of what it needs to be, and for today, I made this picture my lock screen. Now every time I look at the technology that chains me to the desk, I get to remember where we stepped a day or so ago, and visualize the horizon of my many tomorrows across a sky that will be dotted with even more meaning and joy.

Here’s to Monday – and here’s to omni-present hope.

Vacations always bring revelation, on what helps us outside our comfort zone – on what works and what doesn’t – on new opportunities that open my guys to their world. Even now at age 24 I’m not sure we get it right, and I’m constantly rewriting the instructions on balancing structure of the known versus new experiences.

Take Labor Day weekend. Even before vacation Will’s self-stim motoric activities were overtaking daily routines. The favorite has been shuffling preschool word cards, which I view as OK and probably self-organizing to a degree. But when it becomes an obsession, wand he won’t the car or the room until his deck is all organized, and won’t try what I consider more purposeful play with iPad, puzzles or beads – alarm bells go off for me, along with the usual mother guilt over what if anything I could have, should have or maybe could be doing.

In an attempt to get him into something else on day #2, spent lazily in post-hike recovery, we lounged in the motel’s lovely pool, and I deliberately didn’t bring word cards or other amusements. It was one of those gorgeous days you long for during your vacation, and I was basking in the sunshine on a chaise lounge overlooking the two peaks we’d summitted the day before, filled with pride at my hiking men and how well they do on the trails. Jeff grinned ear to ear in the pool while Will showed so little interest in even the hot tub that I worried about him bolting -another of our favorite vacation misbehaviors. I managed to have him join me as I basked in sunshine while admiring the big peaks we’d conquered the day before, but even sustaining him in the chair was a struggle. After a with a newly downloaded new puzzle game lost its appeal, Will rediscovered something simple that I forgot- my phone’s photo albums of him and our adventures.

For at least 20 minutes there I had what I needed all week – time to read, to restore and think about my own broad canvas. I lingered on an article in an outdoors magazine by a native American teacher who bested his teenage alcoholism by focusing on his tribe’s Original Instructions – teachings on humans’ role in the world and their intimate connection to all living creatures. They include love, courage, kindness, respect, humility, truth and wisdom – balanced against the wide canvas of nature where humans are only a part.

How applicable, it seemed. Later after dinner, ice cream and relaxing in the room while Will’s ennui seemed to creep in, I got him to play five games of Uno with me. We made it harder by using a real deck of cards, not an official Uno kid’s set – my best $1 splurge at the Family Dollar. It was my #2 favorite moment of the trip, next to the summit of course. He would have kept going except it was 10:45 am and we had to start the bedtime routine ahead of early rising.

What finally did it for Will and those moments outside of his stim zone? social time with Mommy? photos of him? rediscovering an old pastime? meaning beyond motoric self-calming?

Autism’s Original Instructions don’t come with a guidebook to Will or Jeff. They’re a compilation of ancestral teachings and our own best fit on what our kids need. My list is a compilation from my tribe – the parents, teachers and therapists who went ahead of me and shared their wisdom – with tweaks of my own born in disasters from which we all have learned. Funny they’re not far off from the Native American version.

Autism’s Original Instructions

1) Love, above all else.

It’s amazingly visible when Will or Jeff know I love them. It fuels me, and I try to capture those moments in photos increasingly, so my addled brain won’t forget how happy they make me.
2) Respect, no matter how disgusting the behavior. Like poop accidents on the trail, which thankfully we avoided the following day.
3) Communicating, even when there’s difficulty on understanding what the individual states back.
4) Self-determination. All humans need to feel in charge of their destiny, even to a small degree. The more the control, the more at ease in their world.
5) Structure, yet balance. When the boys were younger I brought my trusty Velcro schedule strips so I could use picto cards to show today’s schedule. I no longer need that but sometimes a photo even if a Google Images one speaks volumes to what’s on the menu literally and figuratively.
6) Community. We all need to learn to live in a world of others, and more importantly know that when we don’t have enough resources on the inside, plentiful help is out there, even if it seems it’s not.

Maybe these aren’t so bad a set of instructions for the rest of us, too. What’s your Original Instruction list?

Sunday mornings aren’t just for churchly insights, apparently. In our house they’re either frenzied packing up the car for the day’s hike, or, on rainy times like today, Sundays mean luxurious white space in the margins mornings, where everyone’s best self tiptoes from behind the screen of our outer face, and says “Hello World!”

Jeff just did me proud that way. His early rising gives me one on one time with him for several hours before Will my late, nuclear-war sleeper, rouses. With Dad away I also have these precious times of clarity where there’s just us guys here focusing on learning and fun together. For several months we’ve been helping Jeff work on following 2-step directions outside the home – as in “go get the newspaper and bring it back in.” Being highly distractable, this means he usually gets to the mailbox and see something far more interesting in a neighbor’s lawn or a bike rider cruising by. We watch outside the front windows where I have a direct line of sight so when he wanders too greatly we can retrieve him.

There’s also the moments where Jeff is absorbed in his own song, literally. Like today, when he held one hand over an ear to reverberate the noise internally, and crooned some combination of “Let’s Go Fly a Kite” and Popsicles. At 8 am. Hope the neighbors enjoyed the concert.

The self-talk is normal for him as is distraction, and usually I’ve interrupted after a bit, especially when wandering starts. First I’d try a referential point at the window, because he looks over here now and then – and if it didn’t work, I’d say his name to get him on track. But today I wondered if I’m forcing prompt dependence and doing my usual of failing to let go. I put a stopwatch on and decided to wait him out to see if maybe he’d kick into gear without me, only interrupting if his safety dictated.

Voila! at the 3:06 mark the singing stopped, he looked down, grabbed the papers, closed the mailbox and marched right back up the driveway and into the garage.

Was I lucky today? did he get bored with his song? or did the dozens of prompts become something he remembered, and it rushed back when I was quiet and letting him go?

One of the hardest things for me to do in anything, parenting particularly, is letting go. Today’s epiphany is that sometimes when I stop the prompts, those roots of new growth will push forward. I think of about six other skill sets I’m working with him, and wonder how else to disengage myself and others from the process, so his new roots go deeper. And I pull the lens back further, to wonder about my own struggles, and where else I can stop waiting for my own version of a prompt and in doing so set the magic free.

Jeff’s since been wandering around the house crooning some new tunes, this one a variant of a sing-song I made up for him with “I love Jeff-y. He’s my Jeff-y.” Sure, it’s not age appropriate. But in a world fraught with hate and division, I take heart that there’s one young man who knows he’s loved, and happy to tell the world who he is.

Whether you’re an autism authority or “just” a parent like me who lives and breathes it through my twin wonder boys, each week brings a parade of events, insights and aha! moments that impact our special loved ones. Here’s my take on this week’s noteworthy items – both autism-wide, and me-deep from my own daily slog through helping my kiddos to grow, and achieving some normalcy on my own.

Autism-Wide

1.Justice Department threatens ACA’s pre-existing conditions. Given autism is often treated as a pre-existing condition, Wednesday’s DoJ decision not to defend pre-existing conditions coverage in the Affordable Care Act in a case brought by 20 conservative states before the Federal court is frightening. The DoJ agreed with the states that the ACA’s coverage and pre-existing mandates were no longer constitutional and that they should be struck down. Regardless if the Federal court agrees, it’s is a harbinger of legal and personal fights to come – to ensure our loved ones get the care they deserve, and are not passed off with half-baked excuses for denied insurance coverage like a life-long congenital disability.

2. Sadness and a call to kindness and self-care. This week’s suicides of prominent individuals cast a pall over the nation with a chorus of mental health experts attempting constructive dialogue to ward off what data apparently suggest is often a surge of such events following publicity. Long ago I recall a far more savvy parent than me saying the one thing that’s good about a lower functioning kid is that he’d never worry about terrorism or nuclear war – and had a sustaining knowledge that someone would always take care of him. I take heart in a weird way that my kiddos are not likely to experience schaudenfreud. Yet still remember a fellow parent of a 12-year old at the time stating her son wanted to end it all – and frightening instances where bullied autistic individuals did what they were told this way. OMG world, can we please take a big breath and love each other – show kindness – and act inclusively.

3. What autism feels like, from the inside.
Ever wonder what it feels like to walk in your child’s shoes, experience their sensory discomfort, or hear and see the same life through their prism? This TheInvisibleStrings Asperger’s forum post chronicles peculiar behaviors I know I’ve seen from my guys – from listening to the refrigerator, to why an old movie always fascinates, to delays in responding to questions. Most importantly the author explains in painstaking detail the body experience of those with faulty neurology. Gives me pause, literally, when I’m asking Will the same question six times, annoyed by his slow or absent response.

4. It’s IEP season, and….
harried parents repeat after me, as I’m readying to do in a week: “The I in IEP stands for Individual.” – Say it with all the patience you can muster as you remind administrators that there’s no one-size fits all shortcut to helping your kid to grow while solving their latest resource crimp.

5. Autism Graduates. So heartening to learn of cousins, nephews once removed etc. who completed high school and are moving on. Now let’s strive to find a place for all of them in the work world. Progress on this front is so superficial and incremental, particularly for the more affected among us.

Me-deep – tendrils that went a mile deep at our house

1. What’s inside out can be righted. Jeff showed me that yes indeed, he can turn a shirt right-side out, and after only a few weeks of practice. Yes, he needs prompting but I live for moments of learning like this. Someday he’s going to fold all his own clothes, and I can watch hands-off and sip a Viognier. Ha!

2. Reading is fundamental. Will’s new-found interest in reading books with caregivers and me is heartening. One of the saddest aspects of my own daily walk with autism is that my guys don’t read. Their logographic knowledge is amazing and picture assisted memory is also huge, but decoding phonemes into expressive language hasn’t happened – yet. Will’s interest put the Yet in that sentence. I just dusted off an individualized reading program developed by one of our finest S/LPs, who abandoned it around the same time she decided she no longer wanted to treat our boys. Time to try again.

3. Nose-prints as communication. The bane of my cleaning tasks are Jeff’s nose prints on windows that my anal retentive self likes sparkling clean. Yet they’re always the ones where he can see people walking by or our closest neighbor’s huge TV which apparently has better stations than our own. Yesterday’s respite helper said Jeff’s bike ride kept getting interrupted by stops to watch people. Feels like a teachable moment in helping him find bridges from his routinized, closed world to the beyond.

4. Food raids as communication. – The downside of Will’s Weight Watchers participation – down 8 pounds, extremely slowly and with see-saws of progress – is that he’s genuinely hungry. He’s always been a chomper and we know how to position ourselves in the evening and keep an ear out for him attempting to forage the garage refrigerator – we thought out of boredom or simply loving to eat. I haven’t quite figured out the magic formula for him but he’s adapting to new patterns and I’m lucky he loves lettuce and vegetables. I’m also mindful that he may have other hungers – driven from boredom, dislike of hearing CNN and yakking political commentators each night, or some other feeling he gets from eating that I don’t know.

5. Like Arwen says…..there is still hope. Balance is not something I do well, as I strive to live out a ditty I saw on LinkedIn this week (inset) and apply new mantra to “move the ball forward” and not just with work. My classic struggle is to avoid putting something of my own choosing at the top of my list, ahead of curing autism or saving the world one tech company at a time. Yeah, I have way too many action items, interests and top priorities. But every once in a while I do what I need and it works. Like my new Pilates class or typing these words before I dive into the work piles. There is still hope for me, too, just like my guys. Just like us all.

Five things you can control (attributed to Arianna Huffington)
1. Your attitude
2. How forgiving you are
3. How you start your day
4. How you treat your body
5. How many times you get back up

Wins and losses come in different sizes when you’re parenting a differently abled child. I’m flying high today because we succeeded in attending a non-autism friendly play at a big downtown theater this week – with far less fuss than before. Yes, Will asked for the bathroom twice and jumped up two more times before we yanked his butt down into the seat. Yes, Jeff was more fascinated by the earrings of the lady behind him than “The Lonely Goatherd” on stage, and I had to whip out the silent fidget toy from my purse when the all-purpose toy in his pants became a distraction. (Ahem.)

Yet we made it through a 90-minute first half, and an hour-plus second half with no traumas. Will wore a collared polo shirt and dress socks, a mini-feat. Jeff as usual looked dapper, even preppy. I got to hear my favorite tunes and their mountain theme of course for this hiker girl resonated long and deeply.

“It’s the simple things,” said a wise parent in response to my Facebook post.

Indeed! As Mother’s Day gives me license to ruminate, and I’m savoring how much better a person I’ve become thanks to motherhood, I’m mindful of five particular gifts that my sons’ autism gave me.

1. Savoring the small. As in the beauty of one tender green leaf fluttering in the breeze. Three kind words from a stranger in the check-out line. Jeff’s honesty when I asked if he just stole his brother’s lemonade. My shiny freshly painted door jambs, done not flawlessly but actually quite nicely by Jeff as he improves his house painting skills; they make my happy every time I’m in a bathroom. That moment where after five years of drilling him on what we do when we see a trail sign – five whole years – Will stopped at a trail sign with no prompting and waited patiently for his family.

2. Breaking tasks into discrete units. Even if you’re not an Applied Behavioral Analysis (ABA) freak, we all learn Antecedent/Behavior/Consequences as we see our kids fail, and bridge them to success. I’ve learned to analyze any activity into its component steps, even if there are dozen – and work on them until there is mastery, if only with one tiny, tiny element in the chain. Because every journey starts with the first step.

3. Routines. Perhaps it’s my bias but I think every human achieves balance when they have a structure onto which to pin their dreams. While it’s always a balancing act to temper the routine with reality, and know when to back off if the day’s going south – our boys need structure, we’ve had to learn how to frame our family lives for them, and it’s given me the lines on the page of my life so there’s order yet white space on the margins even in very crowded days.

4. A sense of humor. I’m still not over the mortification of Will dropping trousers and attending to his daily constitutional in the middle of a trail as a group of a dozen hikers passed by – hikers with whom we crossed paths for another 15 miles. But, hey, we win parental “can you top this?” story contests with that one. The hubby and I have “the look” of silent alarm when something just happened we can’t share publicly without people thinking we’re warped. And they’re usually worthy of the look even if NSFW.

5. Serendipity. It stinks when my sons’ disability thwarts little self-indulgences, as in last Mother’s Day when Jeff had 3 toilet accidents in 90 minutes, ran out of spare clothes, and so I got to celebrate the day in the Target menswear department instead of the MFA. But for every one of those, there’s three moments of unexpected joy, as in last week’s hike when our late departure made me sad that we didn’t have time for the cliff walk trail – only to catch a sunset as it washed the Vermont horizon in orange fire. Or yesterday, when Will beamed just hearing the choral music performed ahead of his little 3-song concert – sitting quietly for a half hour. And how Will was excited beyond belief by just being able to help the Post Office food drive with carrying and sorting canned goods – proving that his favorite three words are “you’re a helper.”

Years ago when I was a child I thought Mother’s Day was about “made” gifts that give back from what is genuinely me. The gift selection was important, as it had to honor Mom but also reflect my talents and even push the envelope of them. Today, as the recipient, the gifts are my children themselves. With Jenn, they shine so obviously. With the boys, they’re wrapped in ways that may not sparkle, yet are positively luminescent, for anyone who has eyes to see them.

Happy Mother’s Day to all you Super Special Moms. May your day give you the vision to see the gift you kiddos really are.

Tree lights still twinkle and despite the noon hour on New Year’s Day I’m still in my PJs pretending this holiday won’t end. I’m not super-into resolutions but it’s hard to turn a page on a year without looking back, then yearning for what’s ahead. Fortunately it was a rich one, a year-long parade of gifts that glittered from what is simple. Family, friends, travel, and white space around the margins that I don’t usually allow myself in a life too cluttered – self-cluttered – and busy. Accomplishments and growth, too, for the 23-year old autistic wonderboys in my charge – slow but steady and sure.

A friend last night said her 2018 was all about more. More health, more hiking, more trips, more fun. Interestingly I’m the opposite. I want less – and yet they’re two sides of the same coin. Here’s my 2018 to-do list of less, and more. What’s yours?

Less:
1. Work. Enough to pay the bills, but without the insanity that often comes with a deadline-driven, highly competitive, how high can you jump profession. Which it is far too easy for me to embrace.
2. Stress. Because sadly I’m a recovering perfectionist who isn’t 100% there yet. (get it?)
3. Skewed priorities. As in, yes it is OK to pursue a non-paying, non-child enhancing, non-responsibility-checklist item as a top priority once in a while. (although I’m still scratching my head as I write this that it’s really OK).
4. Clutter. Am I really developing a neatness gene – ? does autism allow neatness ever?
5. Facebook. I’m considering a social media holiday in the coming week. The implicit braggadocio of the whole thing is annoying, and sets up a false comparison for everything and everybody. Yeah I enjoy preening my sons’ exploits as much as anyone. But sometimes watching everyone else’s wonder-days can divert me from what’s truly important.
6. Fear. I get amazingly caught up in the “is this good enough” or “what will happen if” game that prevents me from much of the below “more” list.

More:
1. Self-care. As in, my #1 priority this morning was supposed to be my stretching exercises which I will get to after 3 other very important priorities for the boys to be squeezed in ahead of them before 4 other things must get done in the next 45 minutes. Can you relate oh autism parent friends.
2. Friends. I’m blessed to have some great ones. When I give myself the time to be a decent friend, everything in my life feels aligned. Like PT for the soul.
3. Community. Autism can be a lonely place, especially when your kiddos’ proclivities aren’t too nice in public, and when lack of respite care forces you to 7×24 child care roles. Thankfully the autism-friendly settings have opened doors as has the tremendous growth in awareness and tolerance. My 2017 included more moments outside our little 4 walls when we tried new things – the special needs choral group, community performances, art therapy, ballet even. Not all of them are keepers but getting out of our cocoon and making us and our autism more a part of the world felt so freeing.
4. Employment-focused development. If I had a bumper sticker in 2018 it would read, “Give autism a job.” And if I have a mission, it’s that. – Unfortunately Jeff and my sideline painting business got sidelined in August when the 2nd and superb job coach of the year went back to college. But as I sit admiring an entire first floor of door jambs and molding glistening white from a fresh coat this year, I know in my heart this business proposition has potential – and that if the fates of employment allow the two of us, I WILL find a way to make this happen. – As for Will, I’m still not sure where his vocational assets lie, and his behaviors like “neatening” surfaces by trashing them have to be shaped before they’re assets not issues. But I know he has them, and as I spent time with him on a cold and snowy Xmas day helping him play puzzles as swiftly as ever, I know he has many assets waiting to be tapped, if I can but find them.
5. Giving back. And not just with money. A very handicapped young woman walked laps with us at the gym a few days ago beamed from inside at a very simple “great job!” remark. Aren’t we all just like that – repaid and refreshed by a simple kindness – and similarly nourished when we pass it along.
6. Journeys. Big surprise: hiking journeys are #1 atop my adventure list, including the vice-presidential traverse we didn’t get to doing last year, assuming my knees can do it, the Grey Knob overnight where we can practice backcountry camping without the hassles, and the winter Grand Canyon trek for my milestone bday in 11 months. But so many other journeys await of the spiritual kind, where the reward is a different kind of world view, and the result in a changed me has just as much power to help my sons, enrich me, and change the world. My 2018 also involves my giving permission to myself to have more of these, especially when it means I give myself permission to do the Less list above, ie less work and less skewing the personal priorities list to work vs. supposed downtime.

Here’s to getting less, more and all that is good in 2018!

“We can do it.”
“Keep going.”
“They’re wearing down – you got ’em.”
“Just one more play.”

Even if you’re a New England Patriots hater – and I’m amazed how many there are – last week’s Superbowl LI holds lessons for every breathing human. Particularly autism parents.

A “Patriots All-Access” broadcast of the self-talk that coach and quarterback had shows how they did it. Every one of us autism parents needs to go watch this. The team self-talked itself into believing – and do what no one thought they could.

Their performance was awful – terribly flawed. They bungled just about every touch of the ball. Conventional wisdom, historical comeback performance, and odds-makers counted them out. Erstwhile fans left the stadium or turned off the TV.

Yet they kept saying the same seemingly trite phrases over, and over. It was like ABA 101 – or a yoga mantra, guiding their focus. And it wasn’t just Brady and Belichick, even if the camera was on them. An entire team of assistants, helpers and benched talent were as one, with the same mantra – propelling those actually on the playing field doing the work.

For TwinMom’s family here, there are so many parallels. This week we’re struggling to shape Will’s new-found OCD-isms that aren’t life-threatening but just not tolerable, where everything ends up removed or in the trash, including car keys and wallets – and of course remembering to wear pants. That doesn’t even count the still-undone work of helping convert his passions into meaningful employment. Jeff’s house painting abilities indeed show promise but teaching him to look at detail, and paint it thoroughly and accurately, still requires work, particularly with his tendency toward distraction. Breaking down each still to be learned task requires micro-precision in identifying what’s needed, and thinking through to the core skills that must happen, takes time and is frustrating.

The tacit naysayers of the world, who see employment as only the province of certain capability levels, or see the list of items to be achieved prior to any goal – the ones who want to set the bar low, so they’ll achieve it – they were the ones that left the stadium in the third quarter, and wrote it off as a loss.

We autism parents – we’re in it to play all 60 minutes, plus. We don’t give up. Certainly we get tired, take vacations, and cry at times. It’s hard work and it never happens on days we’re rested and have free time. Yet I hear myself talking the self-talk of victory all the time. We, all of us, try to say it loud and strong enough that the caregivers, the day program staff, the DDS social workers, and our team on the sidelines hear us. And to find and foster teammates who also believe as we do – that with focus, repetition and patience, amazing feats are ours. I think back to a wise SPED director’s remark about how the boys learned to tie their shoes. “It might take 4 years or practice, and seem like it’s not happening, but never know if the next day is the one it all comes together. And I don’t want to be the one to stop working on it.”

“We can do this.”
“Keep going – we’ve got ’em.”
“We did it!”