Autism’s Original Instructions

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?

Beating prompt dependence – an epiphany

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.

Five things that mattered this week in autism and why – June 9, 2018

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.


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

Five Mother’s Day Gifts from A Special Needs Child

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.

Less and More in 2018, autism-style

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?

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.

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!

Autism Lessons from Superbowl LI


Patriots logo“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!”

Trusting the timing

Go-See-Do cropped 12-31-16
It’s New Years Eve 2016, and I’m ready to assess how well I did in curing autism, achieving world peace and losing 7 pounds. Crap, they’re not done yet.

I’ve been in a blue funk for the past 3 months since I tore my meniscus leading my autism hiking group on Sept 18. My knee has been in various levels of dis-ease (I used that word because I hate associating myself with the word Pain) and the December 2 surgery has not really fixed it. And what a surprise, I’m my worst enemy on rehabbing slowly, which is not my typical speed.

And then, comes this most beautiful quote from a hiking duo I love:

“Trust the timing of everything. Just because it’s not happening now doesn’t mean it never will.”

How utterly fitting, as a summary of our 2016, of my always – as hope springs eternal when I look at these quirky beings called Will and Jeff who life has put under my care, and who are my mission to make happy, and whole. As I sat here doing some yucky long-avoided chore that made me feel incompetent, Jeff has circled around my office, chanting a few nonsense phrases that somehow have now turned into full-throated “Yodelay-Hee-Hee” crooning from the Lonely Goatherd song in the “Sound of Music.” Meanwhile Will has been doing his extended “sitting,” enjoying his favorite bathroom throne in a way that confirms my husband is indeed his biological father. Autism parents probably recognize these far from normal, normals like this. Typically I bend the family agenda to the boys, but today they’ve had to wait. I so needed to be here on this page, processing all the year brought, what it didn’t, want what I’ll do to change us in the coming weeks, as I think about our yellow brick road, and where I want it to take us in 2017.

I didn’t cure autism in 2016. I hope I habilitated the boys. We certainly transitioned as nicely as one could expect from school years to adult services grid at age 22, and I’m pleased by that. But I’m the personality type in the photo above – a Go-See-Do fanatic. I want more, for them, for me, for the world. I want them to be high functioning autistic individuals, or at least higher-functioning than yesterday or last week or heck, last year. I don’t want them to struggle to read the words Will and Jeff taped to their drink cups, or to orient shirt fronts and backs, or to complete a sequence of getting cereal, or wipe their bottoms.

Their timing is off in the grand plan of life, according to me. They are not where I want them to be. I probably wrote that last year, and the year before, and each of the preceding 19 years since diagnosis. – And while we’re at it I didn’t succeed in getting enough people to vote for Hillary Clinton such that we can even hope to achieve world peace or maybe avoid world annihilation as Donald Trump defines it. Nor did I hit my Weight Watchers goal, although having a goal itself has made me better off than without one.

And yet, here we are. Jeff has just returned, awaiting my joining him to help start our day. Will is back at the computer playing his favorite puzzle games and probably attacking the new iPod on the charger. I awoke this morning worried about how low-functioning they are, while noting that Will routinely takes himself to bed these days, and Jeff now tells, half asks me with words when he wants to go to bed, and busily neatens up each room which, while his rearrangements often confuse me, is actually not such a bad skill to have.

Their timing is perfect – for them. I know that intellectually, and on a good day, for real. I wish I could say the same for my knee healing’s timing. But perhaps, maybe, there’s some grander plan, such that their slow rate of progress, and this extended period of non-hiking, of being forced to rely more on Paul, to let go of my obsession on an action items list, is good for me, and us.

So for today, I trust that I did something right in 2016. I’ll go to my personal journal pages in a few minutes and blather about my lists of What Works, What Didn’t in the year, and probably depress myself with more lists of skills Will and Jeff need to learn, in an effort to prioritize our time. I’ll look at the incremental gains and celebrate them, always mindful that their flawed neurological wiring makes their pace not that of my own.

Then I’ll trust the timing of everything in 2017 – that there will still be mountains there for me to climb when my knee is better – new friends and experiences out there waiting to be had -opportunities for me to grab that force me to be my better self. Most importantly, I’ll trust that with that fire of all fires – love – to guide us, we will summit our peak, whatever it may be – and keep marching into another bright beyond.

One thimble at a time


Ogunquit Ocean Jeff 50pct 10-24-16

Progress with autism, at least our variant, happens slowly. A thimble’s worth at a time as you bail out the ocean, some days it seems.

Just for today I’m taking a moment to focus on what’s most important in my life before diving into work. Hint: it’s not my work. While my busted-out knee keeps me sidelined from hiking, we’re using Sundays for sojourns that feed other needs.

Oceans are a family favorite. Jeff loves the waves, and perhaps the soothing repetitive sounds and smells. Will seems to like the views. I’m sure the fried seafood stands we always seem to fit into the journey helps too. We got them and more yesterday in a little jaunt to a beachfront art gallery.

I recalled telling someone last week that autism is like bailing out the ocean with a thimble. I thought of that yesterday, after attempting to tame Jeff’s vocal tics thanks to a new med, and corral Will to stay with us as we walked the gallery and he hadn’t a whit of interest in the paintings. So for today, I have to be grateful for my thimbles of the weekend.

Will – tolerated wearing a suit coat long enough to let us size and buy one for him for a forthcoming wedding. For 3 days of the past 5, has independently come downstairs with appropriate pants on, without prompting. Found his way back to the pew after Communion without prompting.

Jeff – wiped half the table after dinner without a prompt. Ever patient and cheery through averse activities like trying on suits. Truly enjoys the ocean and stared almost reverently at it, which warmed my soul.

As a spectrum disorder it’s often hard to sit among groups where even the supposedly enlightened doubt the ability to progress and the imperative to do so among our more affected individuals. Think it’s time for me to buy them a few thimbles, and explain those moments where those of us who keep bailing out the ocean with them – beat back the tide, and watch our children scamper as they explore new lands among the shore.

Solo, And Yet Never Alone

Special NE67 finishers 50pct 09-22-16

Autism makes us think we walk alone. The universe proves us wrong sometimes.

Look at this beauty of a day, and an accomplishment that made all the mountains sing. Nearly three weeks ago my guys Will and Jeff, and my hubby and I summited the last of New England’s four thousand foot or above peaks – called the NE 67 4K’s list. The feeling of making it to our first major hiking milestone, the New Hampshire 48 4Ks, three years ago despite autism or perhaps because of it, will buoy me for my entire life. Hitting our 67 was even better.

But there was another lesson that made our accomplishment smaller, yet greater – insignificant in a way, and yet so profound it’s still resonating for me today.

As we geared up in the parking lot, Debra approached us and asked to join us on the trek up our last mountain in the NE 67, because she didn’t want to hike alone. Turns out she was in Baxter State Park with a MeetUp group that rather ditched her because she only wanted to hike one peak, not 2 or 3 in a typical loop. Apparently they also preferred a faster pace than hers, and after a few days with her where only a few were willing to go it at someone else’s style, she chose to strike out in hopes of finding other partners on her final 67th hike.

That MeetUp’s loss was our gift. It turns out Debra was a fellow mom of a special child who lived a few towns over. Our paths were a little different – her kiddo has Down’s Syndrome. She achieved her 48’s and 67’s faster than us. OK she hikes and is probably younger and faster too. Our struggles with schools and supports were a little different but so common that chatting our our situations make a boring 3.5 mile ascent fly.

When we finally both hit that summit – there were few moments as sweet.

The message was loud and clear for those like me who don’t believe in coincidence. We’re not alone on the trails of life – even when rocks and roots trip us. Even when fear clutches as we look to some steep ascent ahead and question whether we have what it takes. Even when we think no one else understands.

We lingered at the peak for an hour, about 45 minutes of it taking over 100 photos. I’m not sure the group of 4 neurotypical 20-somethings, or the family of 3 who also summited with us, truly got it. But Debra did. Even if we never cross paths again, the earth, my kids, my companions and everyone around that day are the better for two small little parties of different people, each proving that we may be different – but we are not lost.

Milestones that are so savored become the fire that lights our next journey – especially for parents of special needs kids. Some people turn to Facebook and blogs like this to verbalize their pain with autism-parenthood to let it go. I need to articulate the promise, and the glory – because it’s what makes me believe in the beauty and joy I know around the corner in some other way, and that I hope to feel.

Today’s summit is more about chores, and rehabbing my bum left knee, and smaller scale growth for the guys. Jeff will get to practice attending during this painting job, while I’ll continue to try to both get Will to expand his range of interests, his clothing tolerance, and hopefully take steps to finding more meaningful work roles in the community for him.

My 67th makes me know we can do it. Debra’s presence shows we are an unseen army of the small and mighty, all doing the same.

10 Lessons for Transitioning from School to Adult life for persons with autism

After 3 months post-transition, we’re over the hump of that word everyone fears – transition – and moving on. Here’s my take on essential lessons for individuals with autism – particularly the profound kind – that turn 22 when in the state of MA we shift from school to an adult life.

Media accounts make it seem dire – “the cliff,” it’s called. I roll my eyes now when I read that term, especially now when I’m done with it. No life isn’t perfect. There’s a stunning lack of understanding of autism even in supposedly fine programs, and plenty of gaps with community-based programming and employment. Maybe my analysis would be colored differently if we were in crisis or sitting around watching TV all day until an opening in a program arose.

But there is plenty of growth, goodness and dare we say happiness available on this side of the rainbow.

1. Know them deeply. We all know parents make the best advocates that it’s emphatically the case as you move into advocating – OK, the better word is arguing – for what they need to succeed. Believe in them. They will succeed and so you will you.

2. Decide if you’re seeking residential support, for now. The fundamental decision point at least from my view is whether you want to move toward housing supports outside your home for your loved one. I know advocates who assert that housing is a far more important determinant of happiness than day programming. Many of them are individuals I admire deeply. Yet for me – I just can’t go there yet. It’s a huge leap for me to trust that the many gaps in my sons’ skill sets will be adequately addressed by staff and a system that doesn’t value what I do. Flossing their teeth daily, for example. Choosing to focus on on a day program simplified the task for me. Theoretically if your individual is deemed appropriate for state support, the funding decision on housing and day programs are separate. Bunk, I say. I decidedly felt that by not advocating for residential supports right now, I got what I wanted (mostly) in the boys’ day programming.

3. Get them paying work prior to the transition. Not every individual with autism can work competitively, particularly the profoundly affected. And we are so far away as a world from supporting employment for the disabled. Disgustingly, sadly far away. However having competitive employment under MA’s new “employment first” initiative that values the ability to work even to the point of spending more money to support an individual – is a game-changer. My Jeff works competitively and it was the ticket to IMHO a vastly better day grid. I only wish my Will presented with as readily served skills. Not that I have stopped trying, but securing job coaching and support after the transition is markedly harder, at least in my nascent view of it. It’s like someone has decided he cannot work competitively which is stupid, flawed and one of these absurd binary choices made by a system that overcategorizes, but that’s another riff for later.

4. Make DDS your friend, but know their strengths and weaknesses. Wake-up call to MA residents – we have it vastly better than in most states. The transition process is funded, staffed and by and large, it works if you work it. DDS strengths, from my experience: they genuinely care. They actually do know lots about programming and options. When you make reasonable requests that are in line with your individual’s documented needs and goals, they generally work to support you.

DDS weaknesses – they wait til the last minute. No matter how organized you are, how much you prod and how well you as a parent work the system. It’s maddening, but just set your expectations accordingly because you can’t change it, so railing against it just wastes time although it’s fun to do because all your autism friends relate, too. Funds are not unlimited and when you ask for more than the Medicaid funded ration, there’s a process that throws up roadblocks and that even DDS itself doesn’t understand. Lastly, I’ve observed an undercurrent of “we can’t save everyone” in particularly affected and intractable individuals. Perhaps it’s a remnant of old institutional days and yes, OK, maybe it’s tru. But if you ever see that appear with your individual – please firehose them until they’re publicly shamed. Every human has potential, dammit.

5. Clear your life around the time of the transition. My workload lightened by accident 3 months prior, which I viewed as a cosmic sign and for once, listened. For this over-commitment addict it was one of the best moves I made in recent times. Meetings, paperwork, phone calls to track and prod the process etc – they’ll require time, but more than anything you’ll need to a workable Plan B in place in case there’s a – gasp! – gap. The G word was my most feared going into this. Will and Jeff don’t do well in a lack of structure – they revert to their bad behaviors. So I deferred new work, skipped a trip abroad with my mother timed 4 months after the transition than I know she really wanted me to take with her, and let paperwork and other household things be a distant 2nd priority. It made all the difference to me. Fortunately I had a gap of just 3 days before my guys started their adult program. But I had the emotional reserve available if needed to sustain us until they got to where they needed to go.

6. Celebrate the moment. I threw a Turning 22 party which probably added more busy-ness, but was one of the best things I did. Truly like me, of course I had to schedule every house fixup we needed in the past 20 years ahead of the big soiree. The new ceiling fell down 2 weeks before the main event and the passive-aggressive plasterer kept us on tinterhooks with endless no-shows, and the new 40-lb art piece of a mirror also fell off the wall the night before. But the party was one of those life highlights that carries you through the dark times. I gathered every therapist, teacher, social worker, neighbor, relative and friend I could reach as a thank you and send off into our new life. Amazingly about 60 of them were here as my village celebrated this milestone. The warmth and love sustains me even now. My village joined hands around my family, gave us a hug, and reassured me that there is another village of fabulous friends I haven’t yet met that is awaiting me here on the other shore, if I but open my eyes and see it.

7. Recognize the biggest gap post-transition – free time. No more Monday after-school art class. No more proms, winter dances and movie nights with your class. For many individuals who formerly had some even limited degree of state-funded respite or after-school support, that goes as away too. Suddenly there’s this vast white canvas of time from 3-10 pm each day, and far fewer school-related recreational choices to fill it. Look around and even the most progressive autism related support centers skew their programming toward school-age kids. It’s hard to find programs even open to adults. If your individual’s behavior and attitude disintegrates with too much free time – you’ve got a problem.

Personally I wish I have the answer to this, but I’m still working on it. Blessedly I do have some degree of DDS funding to support some after school engagement but it’s even harder finding staff for adults. Working full-time doesn’t help and I keep getting in the way of my own good intentions to work less, which is a nice to have in some ways but, not really in others. My intention is to start a local walking club for those with autism that does shorter, less aggressive walks nearby as a vehicle to filling this gap. Not decluttered enough in my work life yet.

8. Accept that adult services are viewed differently than your own idea of life-building, and change what you can. Theoretically adult services are supposed to be focused on habilitation. In practice, too often they slip into babysitting mode just keeping individuals safe and somewhat engaged – while defining that term far more liberally than I do. Ostensibly, at a higher level, adult service providers believe they are supposed to be putting programming in place to grow individuals in their care. But old attitudes die hard, particularly with underpaid staff who view involved parents (that’s a euphemism for bitch I suppose) as the enemy.

I will never, ever stop helping Will and Jeff to grow – just as I haven’t stopped in my own life either. Human potential is God given, needs to be fostered and given back to the world. But the system isn’t ready or eager to proceed with the number and pace of goals that I want from it. For today my approach is more of a “changing what I can.” It may be settling, and I reserve the right to edit this post later as I learn more, because it sucks frankly on given days – and it is something I intend to fix, to the extent that I can.

9. Expect both bad and good surprises. Bad, in our house – the behaviors reemerged. Will’s disrobes went up pretty significantly in the 2 months post-transition. He expanded on trashing the drawers in his room and developed an interest in having certain surfaces totally clear and clean, to the tune of throwing away eyeglasses, measuring spoons, parts to air conditioners, and a host of sundry non-trash items left in his line of sight. Jeff’s self-injurious rubbing/blistering himself reared its ugly head and his masturbatory interest when stressed is back. His interests in certain aspects of women’s clothing is downright freaky in public and totally inappropriate especially when combined with a lack of understanding of social space. He no longer wants to have his every minute scheduled and some of the most loving shared passions of ours, like baking cookies with me, have become more sometimes things.

It pains me to write this as I would prefer not to have these behaviors as part of their world.
That said, we’re turning the corner on the disrobes, and working on Jeff’s issues too. Autism sucks sometimes.

The good – both boys have surprised me with their ability to tolerate some larger than planned expanses of unstructured time – AND with their ability to learn. They now are more reliable than not with bathrooming in public restrooms when there is no family bathroom where I can take them. You never saw a happier face than mine standing outside the BJ’s men’s room when the red door swings wide and familiar face emerges with all their clothes on! They surprised me with their ability to accurately ID 3 new WH questions about their day program that i recently instituted – not perfect but better than I thought. While I may not like it when Jeff says No to making cookies, he’s more fully his own person and this is a great thing.

10. Tomorrow is another day. Thank you Scarlett O’Hara for the profound wisdom that we can always start anew – turn the page to beautiful white space awaiting a new story to be scrawled upon it – and work to help our adult loved ones with autism to have a happy and productive life.

Adulthood with autism is not a holding pattern, a chasm or a flat-line EEG readout – unless you let it be. The process of crossing from there to here is time-consuming and may make you sad for the little boys that grew into men, and the ready system we knew. No doubt about it, it’s hard to find helpers and quality, appropriate services for adults like in school days. But they are there. They await you, and once you’re on the other side, on some days when the sun shines, the slower pace of working on schooling, and simply living life to the extent you can – is actually freeing. You, and they, can just get on with the business of living, through sun and rain. Dare I say it – you might even find you all are happy.