Monthly Archives: May 2014


Commencement exercises are filled with lofty speeches on future paths and one person changing the world, etc.   I reveled in a weekend-long college graduation for the other exceptional child in the family – the neurotypical one – and its memories still make me smile.  As I struggle to stop posting proud parent Facebook items, three days out from the event – or to keep focused on work when all I want to do is look at that gorgeous picture of the lovely graduate beside her beaming parents – I think of the other graduations with autism.

Statistics of old, at least when I was newly diagnosed, suggest that 75% of autistic individuals are intellectually disabled.   Surely more recent diagnoses are changing that figure, at least with all the high-functioning individuals I meet in our various groups and therapy waiting rooms.   Yet my W. and J. are the more classic type, who at age 20 cannot read, struggle to count, and have mental blocks on seemingly simple items they’ve practiced for over a decade such as which utensil is a fork vs. a knife in the kitchen drawer.

The future holds a graduation for us, too – with or without a diploma, or reading, or multiplication table mastery.   It’s called age 22, when the school bus doesn’t come, and transitions move to adult programs and adult staffing.   J. is progressing nicely, or at least it feels that way.  His self-injurious behavior appears to be greatly diminished or (I hate to type this or it may go away) extinguished.   His ability to function in novel tasks, such as yesterday’s school play dress rehearsal, are improving.   He’s an employee at a bakery where he greases cake pans with a paintbrush for 2 hours each week.   As I explore community based adult day programs for individuals on the autism spectrum, it feels like there will be a home for J.

For W., however, the path is less clear.   His sensory issues have flared lately as has a probably developmentally appropriate self-will whose assertion seems to involve power struggles over wearing shoes and shirt.   Fortunately the shirt stayed on most of the time during graduation weekend, but it was none to pleasant for Mom and Dad to have to accompany him to the bathroom at restaurants while making about 5 stops across a public restaurant to tell him to put his shoes on or there’s no bathroom, or no finishing your meal.    And, of course, to do so at least 5 times each meal since the bathroom is a lovely escape from whatever, as our meals grew cold and the rest of the family got to enjoy wine and conversation.

I haven’t figured out W’s needs.   Certainly I can beat myself up for, say, inconsistency with many of the at home ABA style programs that we deploy here to meet a need, and then fade as the problem appears to diminish.  Or, I can lock horns right in there with the power struggle, deploying my Mommy Reprimand Voice which works situationally most of the time but can’t be cloned by the respite workers and helpers – and avoids the core issue driving the behavior.

Much as I hate to admit it, W.’s behavior of late is his own graduation into a more adult selfhood and expression of his needs.  Emphatically, the expression is way flawed and socially inappropriate.   Yet W. has something driving the emergence of a different and changed self.   Yes it’s no fun to endure the behavior and it always asserts itself when I’m busy, stressed or tired.   Today is a half day and I awoke before the crack of dawn to attack the myriad work tasks before me – not made any easier by arriving home to dust and disorganization post-trip away that is beyond my tolerance level and necessitating some level of clean up for me to feel orderly in my life.   I’m still not at the work point yet but I needed this moment to pull back the lens and gather perspective at W’s graduation into this latest phase.

There is a lesson in W’s behavior, and my choice – I believe it’s the path, really – is to follow where he’s leading me, listen to suggestions from experts, and hold his hand as we journey together to where he needs to go toward that better place.   No it’s not the traditional cap and gown.   But W. is growing and changing, and while I’m not writing a tuition check or offering advice on course selection, my role is likely way more important in his process-ing down a path of his own choosing toward greater capability and achievement.


That Which Sustains Us: 5 Ways Parents of Autistic Kids Stay Strong

Last night I watched “Blue Jasmine,” with the stunning performance by Cate Blanchett of a woman falling apart.  Hard to avoid the subject of parenting an autistic child without acknowledging the many times, sometimes daily, that we feel the same.

Yet here on an unexpectedly sunny morning – made that way of course because I cancelled a group hike with other parents of autistic kiddos because of forecast thunderstorms 🙂 – I just had to touch this keyboard with the knowledge that we all fall apart – but then we keep on going.    The hubby and I spent 20 min as we shared morning coffee today discussing how to fit 10 lbs of chores into a 5-lb bag.  Typically I structure my life with the “first work, then play” prioritization founded on my overly Catholic upbringing.  But lately I’m realizing the importance of blending that which sustains us, with that which get us by.

Certainly last week had its falling-apart moments as W’s sensory issues flared up to become the kind of rather laughable but serious issues that those of us parenting someone with special needs could know.  Power struggles with your special kid are no fun, especially as they are age 20 and you can’t pick them up in a tantrum and plop them down.  Or, in my case, make them wear clothes or shoes.

I got out of my pickle, and so do all of you, dear readers.   I know that because we’re all here together, progressing with our lives to whatever imperfect yet essentially flawless manner.  So as I watched Cate Blanchett babble to herself on park benches and street corners in the movie last night, I realized I’m more ahead of the game than I acknowledge.
Further, my challenges are infinitely more bearable when do follow my heart to trails I know lead me to sustenance, strength, and hope.

Here’s my list of the five ways that parents of autistic kids I know – including the one I know best, me – stay strong.

Five Ways that Parents of Autistic Kids Stay Strong

1) Passions.   I have many, but so do we all.   When I start Saturday baking bread, or Sunday writing instead of cleaning the house or (gasp) going to church, I fuel myself for the journey beyond.   By hook or by crook today, my/our feet are touching a trail even if it’s the one in the park 20 minutes away.  Age (and a lot of it!) has taught me what I love the most.   When I touch these things, I am steeled.   I am recharge.  I am whole.

2) Mission.   Most of us special parents consider raising our child to greater capability to be our life’s work.   When life sucks, as it does a lot, we remember that it’s important to set limits for your child, so the learn them, and make them their own.  Our family rule with W. is that the only rooms in the house where you can sit around without pants and a shirt are your bedroom and the bathroom.  Sure I could budge but when he lives elsewhere someday,  he will have missed these formative experiences to intuit that if you want to go to BJ’s you gotta wear a shirt and shoes.

I also happen to think my workaday work job is my mission, too.   Like everyone my work has the 80/20 factor, as in 80% of the work is important and 20 is a waste of time, yet my own self image demands require that I deliver 120%, or at least try to do so.  Yet on those days when you win a big one, and I realize I’ve helped some little company have an outsized perception, it’s all worth while.

More importantly we all have a mission to make the world a better place, hopefully by our coming and not by our going (as the saying goes).  When I can lift my head above the day to day, I’m seeing myself take small but important steps for me to leave an impact on the autism community, and beyond.   It makes me get up the morning in a new way, not just to change my kids, or my clients, but truly to change the world.

3) Order.   Action item lists are my specialty, to obsession, and my personal journal is filled with Pro/Con lists.  But for me, I need structure to frame the many moving parts and pieces especially as autism forces so many skill-buildings in a scaffold of personal skills that are rather random.   Every once in a while it’s also important to clean house, literally and figuratively.   Routines that sap energy, family members to which your kind ear makes no difference, and expenditures of money but more importantly time aren’t yielding what you want – they have to tidied up, too.

4) Self-care.  I still struggle to put myself on my own personal priority list, and yes I’m writing this as Jeff has been pacing in my office for the past 10 minutes making his porpoise noises instead of words and telling me he’s ready for the next structured activity I promised.  And yes, I feel guilty. But I need this moment; and far more than that, really.  I know myself well enough to know I also need healthy food, creativity be it with bread, paint or words, physical activity, sleep (way more than I get) and time with girlfriends.   I have an annual charity walk that I do with a friend in two weeks, and it’s like a day-long binge with someone I love talking heart to heart, shoe to shoe.   I can’t wait.

5) Love.   It frees our kids from their unfortunate autistic limitations – it transforms communities – it reshapes a flawed and hurting world.   And sometimes it happens just by letting go.  I have to remember that as I hold tight in struggles.   Day 1’s version of W’s shoe protest where we spent 15 min with him kicking off shoes at least 15x so we could barely walk 2 steps finally ended when I – surprise! let go.   By ignoring W and the behavior for a few minutes he got sick of the lack of attention and put shoes on enough to walk out the door.   Ditto with leaving yesterday after another horrific morning-long stint of shirt disrobes where the speech therapist had to leave 10 minutes after she came due to the No-Shirt-No-Speech rule enforcement.  I thought about cancelling my hair appointment so I could make W. get that shirt on, but I didn’t, and was glad.  By the time I returned,  W was calmly sitting with Dad watching the hockey playoff game, and J was happily rocking away in his chair.  The world had righted itself amazingly without my direct machination, but more importantly W. knew I loved him, then and now – J. knew he could get what he needed – and we all went on together in the work of life, as one.

So here it is, a full hour later than I planned with a 15-minute-only blog session, where the day’s #1 top priority remains undone, and looming clouds are indicating the weather guy was right.  But it’s already so bright.