Monthly Archives: August 2014

Gratitude, and living vicariously

Trek to Bondcliff 09-04-12A former neighbor and now Facebook friend moved me to tears with a simple comment on a recent hiking post of mine the other day.  “I have climbed sooooo many mountains, vicariously, thanks to you people,” she wrote.   This from a person with so many health issues that she’s wheelchair bound and with the use of just a few fingers on one hand.  Yet she’s among the most avid Facebook posters in my little circle and never fails to email with holiday and birthday greetings.

It’s all about perspective, isn’t it?  The term “living vicariously” is often pejorative.   I remember my own mother castigating some of her peers who rather forced decisions on their kids in an effort to ‘live vicariously’ through their choices rather than free them.  On a more positive note I’ve told many friends how I delight in ‘living vicariously’ through my daughter’s travels and now career exploits – remembering my own early career accomplishments and travels.   Certainly the travels for us is now greatly restricted by autism-driven difficulties in finding care for the boys when/if we’d go on a long trip.   We’ve chosen not to take them abroad (not counting Canada) as they’re certainly unable to appreciate new/different cultures, the time-zone changes further complicates destinations and the cost/benefit ratio to them and us just doesn’t work out.

I write this from our usual end of summer vacation taken largely to fill time while the boys have 2 weeks off from summer session until the fall school year.  We’ve done our usual combo vacation with something for everyone – hiking for us all, motel pools and ocean for J., plenty of restaurants and treats for W., and a few wineries and historic sights for the parents.  I always feel guilty relaxing even while on vacation.  This trip I’ve struggled to let go of lingering dumb work items I wanted to finish before I left but didn’t.  I’ve worked hard to put down the usual feeling that  in relaxing for 3 1/2 minutes, I failed at the cause of curing autism and haven’t helped the boys advance their always limited skills.  My mind wanders to the coulda, woulda, shoulda litany of things I could do differently and better, that would lead me to be a better Autism Parent.

But wait – there’s another perspective.  I just turned around to see W.’s beaming face as he lazes around in bed at 9 am without an agenda, knowing there’s a sizable breakfast around the corner, and time with his favorite pastimes and a car trip to somewhere new in store.  J. is soundly sleeping still but I suspect that suits him quite happily too.   The hubby is regaling me with fun facts about some sights we’re about to see and inlet  geography of these fascinating fjord-like Maine ports and coves that are like Norman Rockwell paintings live.  Last night’s drives to see and plot the semi-fictional second home purchase (“Look!  we should buy that mansion by the sea after I write the great American novel!”) is always fun.

Yesterday’s vistas during this spectacular hike will fuel me, but so it this letting go of agendas, schedules and demands, most importantly my own self-demands to be the Perfect Autism Parent.  Rest and relaxation is so very important for those of us special parents, but for me, sometimes hard to achieve.  It’s about letting go of living vicariously through the multitude of posts from Facebook autism-friends on how they live their lives, how they are spending their vacations, or how they are doing X therapy or Y group in order to fix their kiddo.  Truly I love these people and their stuff on a good day is very helpful to know, but tends to make me stray into the self-flagellation department – particularly during my 3 1/2 minutes of relaxation.  I take great heart in my guys’ marching on up that oceanside cliff walk yesterday, and smiling and stimming with joy that says they took a break for a minute too.

So that you, dear M., my neighbor and friend. It’s all about perspective, isn’t it?






CSA – Community Supported Autism

The sun is shining, it’s 3:30 pm and while I’m dog tired and about jump on yet another work fire drill, there such a wonder here that I have to take a break and write about it.  A new Community Supported Agriculture (CSA) arrived here yesterday courtesy of a vacationing friend for whom we’re house-sit – and such abundance you’ve never seen.  I mean like 8 shopping bags full of goodness – vegetables like kohlrabi that my kids have never seen, along with massive leafy greens I’m embarrassed that I can’t identify (collard greens?), fresh sage, onions and garlic, purple-tipped scallions, about a dozen cucumbers and zucchini, plump tomatoes, fresh apricots, peaches, blueberries, cantaloupe, and more.  Bountiful gifts indeed, and I can’t wait to prepare them up lovingly then tell my friend all I made of her gift.

So too an abundance of helpers have just arrived here today.  Call them my Community Supported Autism team.   My skills trainer, a long-time respite helper and even my daughter assisted, so at 2:45 pm when the bus beep-beeped I need only go greet it – or not – then check in on the boys, see what their home school notebooks said about their day, note any relevant goals are challenges on which we’re working lately – and head back to my life for a breath then another dive into my job.

Massachusetts has many flaws, but the way it’s supporting me to enable the boys’ safety and to give me some semblance (ha!) of sanity is frankly a model for other states to  follow.   Those of us who receive state funding don’t usually self-identify for fear if people knew we got aid of some kind, somehow it would get taken away.   Certainly I’m the same.   But although some right-wing nut will likely use me as an example of tax and spend waste etc.,
there are days when I hardly know what I’d do without 1:1 support so when W is streaking naked through the back yard, or gnawing on raw steak from the freezer, J. isn’t simultaneously taking off on his bike and ending up a mile away in some stranger’s house (yes it’s been done before.)  While I fear what post-age 22 life will bring them for living circumstances, and how J. will survive without his beloved backyard swimming pool, for today – I have my CSA.  My helpers are encouraging my guys’ behavior as I myself shape them when I’m with them – toward greater capability and social appropriateness.

Could I survive without the funds? Maybe.  Probably.  But then when the boys get hit by a car or I go mental and end up foisting my sons and their issues on the Commonwealth as a ward of the state – it would likely cost more than this “train them so they don’t go residential before their time” approach.

And on days like today when the sun shines, and J. can independently get his own swimsuit from the outdoor rack, put it on and head to the pool – OR when W. can vacuum the floor better than the college-graduate residents – I think of the words “abundant blessings.”

For today, such abundance is more than enough.

Small victories

It’s the small stuff that matters in the end – particularly with autism, where progress is just a progression of small stuff, done time and again with mind-numbing repetition until mastery is achieved.   It was a busy weekend as clouds made for sub-optimal views.  No hikes and instead plenty of chores I’d long neglected.   But within that there was nice progress.

– W’s ability to get my attention and ask for what he needs is so strong lately.   While we had some shirt and shorts protests particularly when his favorites endured a big spill at the dinner table, we worked through them.

– J is increasingly independent in the morning readiness routine, getting shoes, wallet in pocket and then marching on out to the bus with only minor hesitation at the step where he has to push the automatic garage door opener.

– Both boys had superb speech therapy sessions on Saturday.  In fact J started out so agitated that I thought we were going to have trouble – that 50 minute walk around the neighborhood, followed by time in his 4-layer spandex swing, did wonders.

– Both boys tolerated more than their share of retail store visits as Mom and Dad hunted for deals and returned some broken purchases. What did we ever do without those foam beads they so love lately in the car as we ride around?

– Happily for everyone, I got time for things I needed to do – work, some of it, but also sleep, church, household organization, blogging, and chats with the soon to be workaday world post-college daughter.   Perhaps the biggest small victory herein is that I asked for what I needed, instead of just sucking it up and pretending I could be Superwoman.

Reentry to the work week always brings a yearning for the fun and yes, the chores I actually would like to get done.  But here and now, I see we each are making gains toward the people we want to be – including me.   Now that’s a victory!

Curing Autism – One Parent’s Perspective

The buzz about an ABC News report last week while I was busy living the super-busy, parent of multiple autistic kiddo life is still floating around the Internet, and begs for a remark – or ten. The headline  summarizes that “new” research appears to be science confirming it’s possible for autism to be “cured,” or at least for individuals to make such gains that upon retesting and rediaognosis, that the hallmark social, communicative and sensory dysfunction aren’t present – and therefore, individuals “move off” the spectrum.

What to think here? My W and J belong to the low-functioning camp.  Speed-read down to the bottom of the transcript link where the interviewed physician cautions against over-interpreting the research to say those parents like me of lower-functioning kiddos need not use the research to suggest that they either did not work hard enough, or perhaps even did not apply the right therapies.  The physician, I believe appropriately, used the report to point to the need for additional research so that science could point us toward a deeper understanding of the spectrum itself, and interventions that do work for certain subgroups.

This is such an emotionally charged domain, at least for me.  My autism-related Facebook friends shared some chatter basically supporting the call for applying science to autism’s treatments, and not surprisingly often asserting their own mini-success stories about how their kids have triumphed over Whatever.

Full disclosure:  those who know me know I often trip up over the Blame Game implicit in well-intentioned but undeniable I Cured Autism parental sharing.   I routinely explain W and J’s progress to well intentioned friends and family with Sentence 1 explaining the latest and Sentence 2 beginning “I haven’t cured autism yet, but…..”   For me, I’ll go to my grave thinking that despite everyone (really) who knows me commending me for working harder than most,  my W and J still speak in several word phrases, struggle to count,  self-stim as much as I’ll let them and can’t think in the abstract or in any way outside basic functioning.  I did ABA, Floor Time, sensory integration therapy, auditory integration therapy, B vitamins, broccoli extract pills, a brief gluten free/casein free diet, and not a small number of meds trials.   We’ve most assuredly made progress, but I measure ours in thimbles.  And I’m still proud and grateful for it, and for how it has made me a better person in the process.

Yet there is simply not enough recognition of our lower functioning autism world – these individuals’ needs but also their superpowers and capabilities that make them suitable for the world of work, for the world at large, and also go greatly to be admired.  Clearly our autistic superhero musicians, artists and others deserve the spotlight and accolades, and this discussion is in no way suggesting we diminish them at all.   But so too, do we deserve to celebrate my W. for spray and wipe a table at the public library – or my J. for fully independently  getting himself cereal after school.

On my darkest days I take heart in letters from the boys physicians and SPED director saying I was a great parent, one of the finest.  Praise for heartfelt, hard-won accomplishments always makes the journey seem more tolerable.   However I suspect I’m not alone in this rather mixed feeling when high-functioning autistic individuals get all the spotlight.  I also suspect other low-functioning individuals’ parents could benefit from a little support like this, too.

Success comes in special packages of all shapes and sizes.   It’s time we celebrate more than the pretty-looking examples of “cures” – and appreciate growth however it presents itself – on the path to always greater capability.