Balancing structure and free time

For kids on the autism spectrum who need structure – how much is enough, versus too much?

It’s a worthwhile question that arose out of a lovely group hike I sponsored yesterday with a wonderful teacher-participant. After many years when unstructured time devolved into inappropriate pursuits like public nakedness, refrigerator raids or masturbation, our boys live a very scheduled life. I always thought this was a good thing but as we approach age 22 and at some point, living elsewhere – I kind of wonder if it’s time to loosen up.

My twins represent the two sides of the coin about now.

Jeff seems to enjoy his free time and when bored with one activity, jump-starts readily to the next without asking. Rarely does it bridge into the realm of inappropriateness, although last summer I did create a video model on “asking Mom to leave the porch when you want to go outside.” Our prevocational forays keep him pretty busy about six days of the week now. Hmmmm.

Will, on the other hand, lately is bored after dinner when it’s free time-time, and I’m seeing multiple bolts up to his room to disrobe and lay naked while doing a host of repetitive fine motor tasks I’d categorize as non-learning focused, repetitive stimmy-play, or in some cases – like tearing the pages of books and magazine, or rooting through Mom and Dad’s drawers and bureaus – trashing behavior that’s irritating and definitely not to be encouraged. He has 4 days of caregivers’ attention Mon- Thurs after school, then a 5th day of in the community time with me – all followed by free time each evening. Jeff seems to enjoy his evening free time, while Will’s not coping with it well now. Hmmmm.

Finding the best balance of structure and free time seems a little elusive. I have all kinds of thoughts, here in the middle of the work day when I should be doing about 50 other things. – Time for some deeper reflection, and the kind of closely listening to my kids and their behaviors that may be tough at first (especially when I’m perpetually under rested like now), but that always brings us to a better place.

Answers, dear readers?

Three Goals to Live By

“We all need:
1) something to do
2) someone to love
3) something to look forward to.”

Watchwords for today, and always, brought to you and me by my wonderful yoga teacher yesterday. I’d remarked at how one of the best things people can do to help the disabled is to give them a job.My wonderful friend gave Jeff a job for the next few weeks: painting her mailbox and 6-part fence. We took photos for a social story and washed the mailbox the other day so we can get to work, albeit later than I’d like due the hubby’s desire to have some holiday time away in the mountains.

Jeff’s teacher enthusiastically endorsed the mission, and in a stroke of meant-to-be-ness, my business has rearranged itself (euphemism) to allow me ample time for the boys.

My guys lie sleeping this Saturday morning but they’re on my mind, as always. I’m jamming to complete a bunch of chores ahead of the long holiday weekend, and while they’ll have a few on their list, they deserve this morning moment. They do. And while that mother guilt is always present – did I really do enough for them yesterday? – are we doing the right things today? – the trees in the yard beyond, and the smell of the bread proofing in the oven, tell me otherwise. They grew to where there’s available space, always seeking, growing without my guidance. They found their way into the open. So will I.

As a whole new beyond opens – with my own opportunity to build an autism employment business I’ve always longed to do – I’m hopeful that they like everyone else will have something to do, and not just any old thing, but something they enjoy, with meaning and purpose to their days. I hope they know they have someone to love, if only me and each other. As for the looking forward part, there’s the car trip, the boys’ word and really our entire family’s life metaphor for a journey to some destination whose end is irrelevant – because it’s the journey that’s all that matters in the end.

TwinMom takes a break from autism

TwinMom kissed the men goodbye today (all three) and flew on an adventure. It has nothing to do with curing autism or habilitating my challenged young guys. And yet it’s tightly wound into my ability to be whole – human – and energized to do more than just do – but to create.

My guys need a re-created world. Sure they fit in most days but the next 10 months is going to be foundational. Much as I love them and try to work the independence building, they are going to have to get ready for adult life, and not just in mommy and daddy’s house. I’m fine with deferring the residential component but I’ll be Goddamned if I throw them into a dayhab world with meaningless yet safe existence 6 hours a day instead of purposeful and productive helping.

I’m ready to start living my life differently – more about the boys work of the future and less about my clients.

But first, a rare experience – a pause – an immersion in the past as my best hope for a brighter future for all. Bring it on!

The View Nearing 22

imageWe just concluded our last April school vacation, given that next year J and W will be age 22 and (hopefully) onto their adult next settings. It was a great one.

And in the wake of all the negativity coming out of the Dateline episode on aging out of school autism services – AND a crappy tour of a probably typical dayhab setting to reinforce that building a rich future for the boys will take some oomph to achieve- just take a look at the face of J above.

Smiling, determined, and hopeful.

This is face of autism we need to remember. Not just the disability – the capability. The assets that you might have to look beyond the behavior to see.

This particular day was emblematic of so many for parents on the autism sojorn. I studied the trail well and it was supposed to be well travelled, but we took a side path that wasn’t.  The trail markers disappeared. We had to gauge where we were going by instinct, reading the rise of hills and faint traces of possible foot steps before.

Swift running waters underneath the snow covered brook gave out under our feet, and 2 of 4 of us almost went for a swim. The foot path was so unstable we’d sink up to our waists.  We wandered lost for a while, following someone else’s tracks that led us nowhere.  We were way, way slower than most. My knee ached every time I sank in and to solve all the above I used the terrifically sensible strategy of a brief cry, which seemed like a good idea at the time anyway.

And yet- we emerged. We found the summit and it had J beaming as above – beaming as he does when he hikes. The views took your breath away, with hundreds of summits in bluebird view, many of which we’d done. W didn’t flop once, or even require much motivation.  We were the team we’d always been – flexible but resolute.  We made it, in our own way and pace.

Creativity is a magical thing, and knowing you can employ it is even better.  There appear to be a range of adult day programs and living options, which is great, except there is always some Authority with a stupid gotcha rule showing up. Just like school teams so quickly forget there’s an I in Indiviualized Education Plan (IEP).  Yet I’m watching a number of uber parents come up with novel options, and while it looks like hard work, it also looks very exciting to be finding your own trail. I know that feeling well.

With 11 months to go, I’m sure there will be plenty more program administrators who invoke this or that rule to make sure something doesn’t fit for W and J. And I’m still revising my map of what I think are the best trails for them.

But even when the going was a real slog on this hike, we made it, and there was that moment in the sun when the beaming came as much from within J as from the skies. I carry that feeling with me always. In Eastern circles it’s called right livelihood. Here, I call it my next best summit.













Bridges to our next phase


Last night’s Special Olympics party to conclude the season has me thinking about transitions -also the tabletime topic among the parents in attendance.  W (nor J) won’t have an organized team sport this spring unless I mix up their speech therapy schedule a bit, or reach beyond the local groups here – which is actually not a bad idea.  There’s lots to be gained from trying something new and exercise plus sociability is always helpful for our family.

With one year and 17 days left in the public school system, not that I’m counting, our bridge to tomorrow seems so very near.   The above image is the Burnside Bridge in ?Antietam MD, on a Civil War battlefield we toured back when dear daughter’s Virginia college put us hear such dappled fields.    Because I like my autistic wonderboys need visuals to guide me, I’m keeping it at heart this morning.  It was such a gift of a day, with J. as usual guiding W across an expanse and somehow everyone getting their needs met.  I know that’s possible for adults with developmental disabilities, however fresh the stories of frustration that square pegs of these special individuals don’t fit into the round holes of adult programs for them.  I also know it’s very possible for me to creatively frame a life for them – and me – that meets our needs, allows us to grow and yet places us on some undiscovered path to a future full of light and promise.

I”m also heartened that I’ve made it here, God knows how sometimes.   Today is day 5 of the hubby’s seemingly endless business trip and the work demands have been ridiculous, yet somehow I’ve held it together.  My own life is on its own bridge to somewhere – hopefully not a bridge to nowhere – and I feel that too.  I’m ever mindful that I have options and can exercise them should I figure out what the heck ones I want, and more than anything manage my own warped self-expectations.

To the bridge!  to the future!   to a day with the best of all we can be.

I like you just the way you are

fredrogersbigProfound wisdom comes in the simplest packages.  Like a man in a red sweater and blue tennis shoes who simply tells you “I like you just the way you are.”

What a talisman for the day.  A FB friend reminded me that it’s been nearly 12 years since his passing, and reposted a great clip of his message when asked how to help kids understand the 911 events. The clip saw him relate how people would walk up to him and relate how good he made them feel – and how by carrying that same message forward to their own children, these people were working to make more neighborhoods feel safe and loved.

Self-acceptance is so freeing.  I found myself adopting his “I like you just the way you are” mantra as I glanced sideway in the mirror at those ghastly 5 lbs I can’t seem to lose lumped in my midsection.  I said it to both W. and J. first thing, as I caught them in the act of doing good – J. yet again independently proceeding through more of his morning routine, and W. as he made his own sandwich with that off-centered cut rather creatively into companion 1/8 and 7/8 slices.

Here on day 4 of the hubby’s business trip when lots is going wrong, so much about me, the guys and our lives are just fine.   I love you just the way you are, my friends.

A life in your own skin – autism edition

black-and-white-hands-300pxA faraway yoga studio that I love but can’t visit often just sent a gem of an email that stopped me in my tracks.  I jumped out of a document I was writing, ignored the overdue action items and pondered a truism.

Autism has a skin, and be we parent or autistic loved one, we have to learn to live in it.

For me as a parent, that means tolerating messiness, clutter and over-commitment because I know the outcome is richness, and balance in a way that simply limiting the day’s action items wont’ allow.  I thought about it this morning when I was dog tired and yet couldn’t sleep.  I started the week sleep deprived because I had a weekend jam packed with good things, and so the work things had to get shoved into less space.  At one point the hubby said to me that maybe I should stop overcommitting and making myself so stressed on the weekend.  But thinking back to all we got done, and did – I say – nah.

For W. and J., it means learning to habilitate to your flawed sensory systems.   So when Mom’s got the TV on and J. needs a break, it means J. hides in the corner, or goes into the basement sanctum of his spandex cocoon swing, and finds what he needs.

For W. it means insisting on clothing fabric and styles that make zero sense to the neurotypical, but apparently soothe and eliminate the chafing of common cotton, zippers and fitted waists.

The best part of the email was the reminder:

Be Bold – honor the season you are in, no apologies required!

Making the Shot

Will shoots BBall 02-28-15
It’s so true – parents of special needs kids walk on eggshells most of our lives.  There’s a funny saying going around Facebook circles lately that if something is going well, don’t talk, don’t act, and don’t even breathe.

How silly, really.  We’re so used to things going awry that when they actually work out, we’re stunned. – W. had a fabulous Special Olympics tournament Saturday.  While he’s scored more baskets in the past, he paid attention more, zero shoe disrobes or running off the court to find Dad, and twice he even ran instead of lumbered back and forth as shots were won and the team moved from offense to defense.

W. made the shot because he practiced lots – and because we and others helped.   I take heart on that greatly.  Today’s Monday morning solo-parent rush out the door meant a few practice tasks got expedited by me, but I take heart that every time the boys struggle, then win, over that twist-tie on the sandwich bread for their lunch, we score another point for the team.  Every time W. comes across a room to find me when he’s stuck on untying his shoes, he made the shot and so did I.   Every time J. independently follows directions and gets his toothbrush when I yell it out as I’m frantically wrapping up some work before it’s morning readying time – the crowd of all special needs parents is cheering behind me in the stands.

We’re making the shot – and it shows.  Yay!

Meyer-Johnson Pictos for Parents

SnowsMtn views only SMALLER 02-22-15Schedule strip cropped and flipped 02-24-15

It’s day 2 of back to school week after February vacation, which is always a good thing as we embrace structure and routine.   Day 1 featured an unexpected kid financial paperwork matter which sucked up 2 hours of time I didn’t have, capped off by a respite worker cancellation which further crimped work time and put me more behinder (apologies to the grammar police).   Welcome to my world, special needs parents.  Isn’t this the life.  In my down moments I wonder if the rest of the world understands what it takes for us somedays just to get it together for the most minor of activities.

Autism being a disorder where visuals help, I’m instantly drawn to the same efforts that help my kids.   Pictures.  For years I’ve guided my guys in understanding daily routines using the ubiquitous Meyer-Johnson pictures arranged in a strip, with some prized reward at the end.  Well here mine for the day.   I’ll skip over the 1st 15 cards which would basically say Work-Work-Work-Work.  The reward is the view from where we are, and where we’ve been.

Mountains call me, and remind me there is a gorgeous vista with autism and all things. This one was from Sunday, when we summited a minor peak in NH’s Waterville Valley made tougher by freshly fallen snow that required a mile of trail-breaking.  I see it and instantly I know no matter what crap is before this on the schedule, there IS a prize later in the day.

On Sunday’s trek, my good knee was killing me and each squishy step down a foot or more of unconsolidated snow made it twist sideways – not fun.   The hubby was equally challenged and W. was flopping on the easy part up. – But we made it. The real star of the day was J., who of course broke trail in the hardest part practically without breaking a sweat.   We also rotated out the 2nd position of who was behind J. for harder stuff, and took breaks.

Really seeing your accomplishments is so powerful, in autism and all things.   On Sunday it was sitting at a chilly yet sun-bathed ledge looking out at 3 peaks we summited last year, while ringed by two other mountain ranges to the left and right which we’ve also done.  It was seeing W. enjoy the summit after the flops, and J. smile – while I rested assured knowing that although the walk down was going to kill my knee, we all made it on a day when it was tough. – Yesterday it was seeing that a yucky work situation was ending and over the course of a few years I really did help the player in question.  And it was seeing the daily improvements that we as parents of special needs can relish if we but open our eyes to see them – in my case, J. being able to take out the trash with only the most minimal assistance, and W. verbalizing a genuine choice about what he wanted for the afternoon.

So here’s to another day of the slog, when something will hurt, the trail breaking won’t be perfect, but my guys are increasingly more independent, I have trusted help, my day will assuredly have some surprises – and there will be another vista just like this one as my reward.

Who Knew?

Who knew? – that 7 or 8 years later, this chaotic water park type of environment not exactly fine-tuned for autism – one that was formerly so aversive my guys sat on the edge and didn’t participate – would be W and J’s favorite day of autism camp week.  Chalk that one up to try, try, and try again – and sometimes even autism gives you a surprise.

Who knew?  that other people actually can cope with my guys when they deviate from the plan, as the camp director had to do on snowshoe day when W. protested wearing his bib overalls.  News flash, Mom – you don’t have to do everything.

Who knew? that when you stop micromanaging, and let go – even when for years, the way you HAD to get your kids through the day was to duly consider every minute sensory experience or fine-motor process at which your kids are delayed – your kiddos cope just fine.