Summer turned to Indian Summer, and now fully to Fall, my favorite season. “What I my learned on my summer vacation” is a stale headline as yellows and reds paint leaves on the trees.   Yet lessons are always relevant and indeed vital to this Mom because they take the felt and make it real, if only as words on paper to be savored and shared.   So what did this special-needs mom learn?

• Failure happens, and we survive   Despite the pontification of PhD’s experts, despite the ABA mumbo-jumbo and two monthe of diligence, I failed at teaching W. to wear underwear.  He’s 18 years old and truly has a will of own, despite whatever cognitive age he may be.   That’s probably a good thing – even though it likely drove away a teacher/helper here.  Thinking back I suppose locking the teacher in the bathroom for tens of minutes probably wasn’t an enriching job, despite the pay.  The time spent on W. also meant little to no time spent working on J.’s maladptive behavior, not by design. (mom guilt, mom guilt)  Yet here we are, trying it a different way now, and moving on.  It led us to finging a frankly better ABA expert, and to a newfound respect for age appropriate choices by our kids – even if they are not our own.
• Self-determination wins.  W. clearly stated his wishes to Go Commando.  In a disorder of head-banging and self-injurious behavior when human desires can’t be expressed, at least my W. found some half-appropriate means of communicating.  You kind of have to admire the gumption, despite his flawed ability to show it.
• Beauty and strength shine through.  J.’s sweet and loving disposition to his brother so characterized those long afternoons spent monitoring whether Will was motivated enough to emerge from the bathroom for whatever reward was proffered. He has an amazing ability to be patient and go with the flow, even when it so violates his nature, like those 5 am rising to go on long hikes.  J. also had a fabulous summer enjoying his swimming pool and new gym facility.
• Hikes of stunning beauty, as the never-ending trail carries us forward.  We summited 10 of New Hampshire’s vaunted 4,000 foot or above peaks, including a mammoth 19.5 mile Traverse of the Bonds over Labor Day weekend.   Full disclosure: the trek was not without its autism moments (don’t ask a man who poops every morning at 7 to forego it on a hike, or to care if 12 fellow hikers we’ve never met are sharing the moment.) And this Mom is not nearly as fast and rugged as those 18-year olds I shepherd – rather they shepherd me these days, and wait for me so patiently – particularly J. who could finish anything abour 50% faster than the rest of us.  But we have conquered 45 of NH’s 48 4K’s.   They have taught us all about each other, revealed unknown strengths, and tucked beauty inside of our souls, for safekeeping in stormy weather.

When Daylight Savings time ends in a few weeks the clocks will fall back, but thanks to my wonderboys, our family will continue to Fall Ahead.   The road goes ever onward, to greater skill and capability – and not just for the boys.

Autism brings out the best in people. Meet Brian and Brian.

They’re thirty-something’s with families of their own – Brian on the right was even a newlywed – who took a full week off from their lives to be one-on- one camp counselors to my W. and J. Talk about embodying Christian love for your fellow man. It still makes me tear up, to think two strangers set aside their lives, without pay, just to ease the burden of someone they never met- with a disability whose challenges are unpredictable and often unsavory.

Wow. Would i have the capacity to love and give so freely?

Camp as it turns out was a fabulous experience for the boys. Each bedtime without them I wondered if I’d get “the call”- that they had run away in the night, or that Captain Underpants had pitch-tossed his briefs one time too many. Instead apparently my guys were easygoing, happy, tried new things and were “well-mannered.” The latter certainly was not an adjective I’d ever applied to my brood.

J even did what I had stressed about and prepared him to do for four months: take a stand-up shower instead of a tub bath. Since camp only had a shower house, he had no other choice. We gradually desensitized him with our hand held, European shower head. Camp also helped us by having someone go take a photo of the actual shower stall and fixtures, then email it to me, so i could make it into a social story. I didn’t want the shower to be the epicenter of the week so i filled the story with other cool things to do there: swim, boat, roast marshmallows, have campfires. We read the story over and over, at school and at home.

On shower day Brian told J his Mom would be so proud. I hope J heard him, and beamed like he does when I say that.

One Brian told me you could tell W and J were raised well. I tucked those words and memory of that moment in my heart, for forever-keeping. I’m not sure he’ll ever know how much that meant to me.

Day to day, it’s hard to see that your kids with profound disabilities are making progress. Then the wind whispers, you let go of their hand, and they walk off beyond you, to where they’re meant to be. Which, amazingly, is more capable than when they left you.

Joy!

Amazingly my twin autistic wonderboys have been at camp for six whole days now – without me!  Wow.  I was expecting the call long ago that they bolted into the woods, had a nuclear meltdown, or the counselors were simply sick of their quirks and sent them packing.

Without them, I’ve had a week of space and time to catch a play, a museum, time with the neurotypical daughter, self care errands like the periodontist (OK that was not my idea of vacation fun), and husband-talk.  Having dinner solo with the hubby last night, no kids, was weird.  Shades of the future when child rearing years are done and it’s just the two of us, like it was at the journey’s start.  OK I worked a lot while they were gone too; kind of what I do with myself.  But there was a white space to the margins that was soothing, yet also lonely in a way.

Without them, I’ve wondered what they missed about home – what they’ll first crave when back at the cradle – what they learned.   I always hope my boys know they’re loved, even when they’re not with us.

Tomorrow morning I’ll no longer be without them.  They’ll probably smell like real men after a week in the woods, and probably weigh 10 pounds more given the stash of cookies W’s counselor showed us as his secret behavior-inducement.  I’m already thinking about the long soaking bath I’ll give J., and whether Will still will crave his computer and his iPad.  – Yet my life will be complete, in a way – and the source of what has made me good, focused, and whole will be back to further reshape me into the person I’m meant to be.  I know they’ll be things W and J will do that I will not entertain as happily.  Yet refreshed for the journey, I’m eager to see what they are – and bend the sapling into a mighty tree.

There are empty plates at our dinner table this week while W. and J. attend Camp.  I thought the sound of my exhale post-Camp drop off on Sunday would echo down the Eastern seaboard.  After days of planning and packing, they were off.

But something happened along the trip home – I missed them. I still do, even though we enjoyed the leisurely drive home thru local wine country, and have both tackled long-overdue projects and errands.

I’m collecting a rolling list of all the wonderful things I miss about W and J. this week.

• chores they do, and I don’t.  They empty the dishwasher, wipe the table after meals, and put their dishes in the dishwasher.  (reading this, oh college student daughter of mine?)
• taking breaks – When the bus beeps at 2:45 pm, I get to force myself to stop, take 15 minutes and be human, instead of an automaton answering email and dealing with seemingly perpetual work demands as a work from-home freelancer in a service profession.
• walks – I made my husband walk the neighborhood with me last night after dinner.  Even though my guys seldom talk and J. likes to walk 10 paces ahead of me, they’re my exercise companions.
• pure joy at the simplest things – J’s favorite cranberry cereal in which he pours the milk to the tippy-top then drinks 2-3 bowls of it;  W’s Leap Pad that he sneaks away and plays with delight.

We grown neurotypicals complicate life way beyond what’s needed.  I’m storing all these moments when I miss W and J in my heart, and hoping they feel the same about the little things I do for them.

Oh so quiet around the house today, our 2nd day of the boys attending Camp Fatima’s Exceptional Camper Week.   What a gift – a full week for the boys to attend camp like every other kid, with one-on-one assistance – while Mom and Dad luxuriate in time away.  Well, for us, we luxuriate by working like banshees at the crack of dawn, but I must say that not having to wake at 6:45 am to shower and shave two grown men and in W’s case, to make sure he didn’t throw away his underwear, is restorative.

Friends have asked if I’m worrying.  Yes, and no.  I’m framing a list for a future blog of all the things I miss in caring for my special autistic 18-year olds.   I do wake thinking about them, wondering if theyr’e having fun, hoping the loud music at the dining hall isn’t too much for J’s sensitive ears, and hoping W’s “going commando” instincts isn’t wearing on his aide.

I’m also overwhelmed by the two 30-something young men who are our boys aides, and who left their wives and in one case, their young daughter for a full week just so that I and my husband could take a break from the daily rigors of caring for someone with autism.  What better demonstration of love and charity toward a stranger, and that stranger’s (even stranger) kids.   I hope W and J are giving them a few moments of joy, like they give me.  Maybe in time I, too, can find a similar way to give back to the world,  as these young men have done for me.

Trails are spelled much like “trials” for a reason.  They’re one in the same – it’s just an adjustment of letter, or an attitude, or a feeling or two.  Over the past two weeks we’ve surmounted two major hikes – Isolation and Owl’s Head – that are accomplishments for any person, let alone those challenged with autism.  I’m still glowing with pride over my little wonder boys and their ability to put one foot in front of the other, and move forward.   Pardon the moment of parental crowing, dear readers.  When life is tough, the hubby and I say to each other that while our boys can’t read, struggle to count and can’t open a soda can or a granola bar independently – they sure can hike up the mountain.

And that’s what we are all doing, truly.  My photos of our journeys usually don’t do justice either to the natural beauty of the day, or to my sons inner beauty, since their ability to look at a camera and focus is limited.  This leads to lots of “funny nose face” images, or others where they’re behaving in ways I’d rather not memorialize, like the hands going to the pants and so forth.  But look closer.  The top of the above image shows Boot Spur, a side peak south of Mt. Washington where those who struggled to emerge from forest and shadow are treated to a 360-degree view of the vast beyond. We sit looking at our future, knowing there was about another 2 hours beyond that to the actual destination of Isolation, and yet seeing the path that we all know is very doable – with views every step of the journey to delight.

Today is a weekday, workday, and busy day.   Disrobing is still part of our daily trek with W., and each day we continue to work on behavior-training to help him learn to keep his clothes on where it’s appropriate.   Self-stimulatory noises are still part of J.’s path, as are occasional slaps to himself, and a tendency for hands to stray to the private parts – behaviors that rise with stress levels.  Each boy’s list of activities of daily living they must grow loom as large as that mountain.  At 5:10 am as I write this, the day’s to-do list has only begun, and I’m already half way through the coffee pot.

Yet there is a trail, and it is only a trial if I misspell that word.  It is leading forward, as surely as all others we summitted.  And there is a view to savor always, if we keep looking up to see it.  My challenged boys had the fortitude to spend 12 hours of one foot in front of the hour to get to what you’re viewing above- 14 hours, in the case of Owl’s Head – even when the pebbles beneath them slid and they were tired or afraid.   That’s a reminder to me at least of their patience, strength, and perhaps even trust in me as we march on toward capability and happiness.

There was a rainbow across our seemingly interminable 20-day school vacation. It came when I least expected it – arcing across the horizon as a reminder that where we start is not where we end – and in the process, there is rare beauty.

Today marks Week 3 back at school. We survived, dear readers, but you knew that, because each of you have survived trying moments of your own. Right now it’s raining here at home, our first rain in nearly a month. Rains soothe, bring us inward, and give us pause if only when we must slow down, maybe wear a different outer shell, and make sure the structure of our abode is intact.

Our real rainbow occurred the evening after my last Commando post, in the parking lot of a beach-side supermarket of all places where we restocked snacks and beverages. We unloaded our cart while pointing to the skies with a few oohs and aahs, and some hurried “Look! Look!”s to the boys who didn’t get it.

It was a good sign nonetheless, and I’ll take any sign I can get. It headed us back to the ocean where captured some stunning photos of W. and J. coated in golden sunlight, both beaming, atop the sand dunes. Not wanting to leave the evening light or a family moment spent not fighting about underwear, I twisted my husband’s arm to go for a drive, just exploring.

After twist and turns we discovered a neck of land arcing westward, where near the tip there was a beach where apparently all the locals go to watch the sun set across the waters. We were about 10 minutes late for the sun’s dipping beneath the horizon, but pinkness still washed the sky, until it ebbed away with calm. I filed the place to memory and savored the partial glory.

The rainbow’s end that evening was a moment of peace and perspective, and it has stretched all the way to today. Vacation taught me about W.’s need for self-determination. For autistic young men locked in bodies without the ability to communicate, behavior is their way of speaking. This young man has a voice, and a spirit, and a soul – and he’s going to use it, dammit. Willfullness is a gift. So many of our autistic kids languish in seeming tolerance of anything we give them, only to either half-exist in sadness, or later lash out in aggressive or abberant behavior we can’t connect. My W. wants to set his own course, and he’s telling me now. This is good.

The process of shaping behavior sometimes isn’t pretty. W’s first day back to school on July 9 was horrific – a spike in disrobes unlike even during vacation. Days 2 and 3 weren’t a picnic either. Day 4 featured a 3 hour and 45 minute protest disrobe. The behaviorist drove me nuts with endless repetitions of Go Read My Protocol and Keep On Doing This. Yet gradually the disrobes have decreased, and with it has come an understanding that Mom and Dad require underwear most times, and that if he wants his usual routine, he has to use the choices available to him – styles, sizes and fabric of underwear – to get what he wants. We aren’t there yet, but we have dialogues now. Isn’t that what we want with all our children?

Vacation also taught me that J. has passions all his own – and when immersed, he’s his own young man, no longer bound by his twinnness and his role supervising his brother. J. so loved the beach – hours of walking the sands, swimming out way beyond my tolerance level, and smiling like we rarely see. The less self-stimulatory (“stimmy”) noises and hand clenching that are typical with him subsided. My motherly heart felt fulfilled just watching him. My challenge now is help foster that same joy in other activities. We all need to find our joy.

Finally vacation taught me about myself. Moi, aging old moi, is capable of fresh vision, and maybe even finding my own joy. I concluded school vacation by having to make a choice between attending a wake for a friend’s parent, and hiking. I agonized, tried to do it all, and when circumstance finally forced me to make a choice, it was what fed my soul – hiking. It’s a move that probably wouldn’t have happened a few years ago, and before a week of watching my kids find what moves them, and thinking about what it means to me. In lieu of being at the wake, W. and J. constructed a little memorial of sorts in the woods to my friend’s dad. Our prayers softly-spoken that day became part of the bedrock that is the mountain, and what grounds all of us – even the autistic – to the earth.

How fitting that our final day of vacation was mountain glory that had only sunshine. And our road led us back to what is truly home.

What a week it was.  The Car Trip of the last post inspired a 25-minute naked protest inside Target’s changing room.  We didn’t end up at the chosen destination, the beach and the fried clam shack — partly because the weather had changed, but partly because W. spent so much time being naked.  The behaviorist’s input of the day before seemed off-topic as the antecedents, behavior and consequences were vastly different.  W. didn’t respond to motivators that worked just the day before and a new, defiant, probably typical 18-year old willfullness emerged that may have been developmentally an achievement of chronology over autism, but frankly was a pain in the *ss right about then.  What’s more, J. began siding with W. in the battle of wills against Mommy, even attempting to bite me to emphasize, I suppose, that W. really, really does not like wearing clothes.

And I was alone, no hubby to help take a break from the fun – or at least share in the black humor of such lovelies as when your 18-year old strips in public, and hasn’t a clue that this is not a good thing.

Yet here we are, a full week later, as breezes rustle the hair on my writing-arm in the white walled calm of our beach motel at Cape Cod.  Nature can be such a reflection of the soul.  It reminds me that yes, we did survive last week – somehow – and we will do the same again today – even with autism.  To his credit, the following day of Sunday 6/24 for W. was better than the day before.  True, we had protest strip-downs whenever I mentioned the word Church (sorry God, I really did try to make it to Mass) and even when it was time to wear the bathing suit prior to the car trip to aforementioned beach. Maybe that’s because these were Mommy’s agenda items, and not W’s.  However help arrived (yay!) in the form of a long-unavailable respite worker, one of my absolute favorite, who managed W. and J. at a graduation party of a friend’s daughter.  I also felt the love of two friends there who came over to me, shared my commiseration and one reminded me that during tough times, your daily action item list should have Just One Thing.  As any of you who know me will attest, my weekend Chores and Fun list is a black-scrawled 8 1/2 x 11 with zero white space in the margins.

Monday through Friday, thankfully, had the structure of 3 field-trip camp days for W. and two at-home days with a beloved babysitter.  The first two camp days were OK.  The third day never happened because he spent a full hour on the toilet while throwing apparel willy-nilly across the bathroom, for the camps staff to retrieve and plead like a game.   The  2 at home days were the opposite – happy, mostly well-behaved, albeit with an amazing new pastime of whipping off the pants, the underwear, then re-donning the pants so fast that no one knew they were gone except me, who’d find them in sensible locations where every other family stores men’s briefs like the magazine bin.

Going Commando – that’s what my lovely new social worker at the state DDS agency called it.  The word makes me think of the weapon I’d theoretically wield with him when my beloved naked boy gets like this, only I’m a pacifist, so the only weapon I really use is my voice, which my typically developing daughter will probably tell you can be worse than an Uzi.    My mission according to the behaviorist last night, is to spend the next 5 days or so training W. that underwear is good.  Of course this sets up the essential conflict, of W. versus Mom – Commando versus Captain Underpants.

My blog is new, so not many readers/comments, but dear reader whoever you are, offer a thread of wisdom if you can.  Mine lies in a belief that we all have a deep sense of knowing what is best for us, however flawed our behaviors.  So my mission today, and tomorrow and always really, is to help W. find a way to honor whatever is going on with the Commando stuff, while habilitating his behavior in accordance with the real world. Tall order at times, it seems.  I just peeked across the corner and asked W., who’s lying in the motel bed, if he was wearing underwear, as I spied one of the new 10 or so pair lying on the floor.

“No.”

“Can you please put on pants, W.?”

“No.”

My brow furrows, I snicker at his honesty, and I feel the pang of having to stop writing and start living a life that is often not what I want it to be.  I close out this moment knowing that the next time I write – there will most definitely be a story to tell – and somehow, somewhere, a breeze that brings inspiration.

One of my sons’ favorite phrases is Car Trip. It connotes a step outside the cocoon, a departure from the ordinary, and usually treats and pleasures. Today I gave them a choice of basketball at the new gym and a trip to Chipotle, or the ocean and clams. Thankfully they picked the one I wanted, too.

So we’re off! After a few obligatory chores. Yes I am always that kind of mom.

What a catchphrase for today, and for all of us who parent adults with autism – Becoming Remarkbly Able, by Dr. Jackie Marquette.  I hear her speak at an autism conference and marveled at the growth she achieved with her son Trent.  Even more notable is that Trent’s autism in many ways is the classic kind.  No offense intended to anyone, but with higher functioning autistic individuals who can speak, write, drive cars and attend college – it’s easy to profile their achievements, because they are much like our own.   Less common is the celebration of the more challenged.  Trent, from Jackie’s accounts, has needs which she characterizes as “significant.”  Yet at the time I attended the conference, Trent’s artwork business as sold on greeting cards and prints was flourishing to the point he was acheiving a little steady income stream from it enough to pay for a portion of his living needs, if I recall correctly.   That’s absolutely huge, at least for parents like me who struggle to help our teens and young adults acheive gainful employement, and worry about their life path without it.  Trent and Jackie are a beacon  as I work to uncover the unique strengths in my guys.

Listen to the acceptance and love for what is unique in her son, from the publisher’s description of Jackie’s book:

“The Walking the Path Model© is a system of ongoing assessment and action steps that promote the individual’s participation, emotional support, and growth. WP is about identifying talents and strengths, then transferring them into tangible forms. It’s all about finding and pursuing that hobby, that activity, that job, or that subject to study which makes the heart sing. How can this be done when a person’s needs are significant? Supports are identified and negotiated to help lift and link the individual to full involvement and participation.”

Like an old friend just rediscovered, I’m eager to pore through Becoming Remarkably Able.   We are all remarkably able, if we have the vision to see it.