Monthly Archives: September 2014

Breakthroughs, autism style – and making them last

Shoes cropped 09-28-14I’m away at a 24-hour girl’s getaway, with wonderful though different than me friends and a vantage point over a lake that would inspire any writer.   Hopefully the rest of the house will continue sleeping, because the sunlight as it dapples the water through the trees is enough to stir soulful longings of so many kinds for another hour or more.

Call me Guilty Mom but the ultra-committed part of me feels bad leaving my boys ever, when I work but especially when I play.  Yesterday  our most fabulous caregiver made a second mini breakthrough of the week with W – getting him to wear his old tennis shoes for a walk, instead of the Crocs which have become his emblem in the past six months.   She texted me photos so I could share the moment.   This was after she got him to wear his long-john pants for albeit only 20 seconds, but that’s far more than I’ve accomplished with power struggles over clothing.

What’s more the old tennis shoes followed a morning where I insisted on a new shirt choice – I sabotaged the shirt drawer by not replacing the just-washed two favorite shirts – and Dad finally got W. to don not only an non preferred option – but one that’s cotton, instead of the wicking tech fabric that has been the only one tolerated for months.

What’s the message here?  TwinMom has to take more vacations and get more help so her kids can take baby steps on the path to where they’re meant to be? 🙂

Sensory issues with autism are among the thorniest to fix.  Behaviorists talk about the need for consistency, antecedent control, reinforcement of other behaviors and all that.  But as parents we struggle to find the balance between draconian requirements that doesn’t respect the person in side the autism – and appropriate rules and structure.

Yet progress especially with kids on the spectrum happens with daily breakthroughs that other people call baby steps.   It’s that daily progression of choices made, challenges worked through and new neural patterns being formed as a result.

What’s even harder, sometimes s that progress is about the often mind-numbing repetition that goes along with establishing patterns.  Like the fact that I’m going to have to go back and repeat those 15 minutes of protests over the shirt choices, what whatever length of time V the great caregiver took to get the tennis shoes vs. the Crocs on the feet, and endure the glaring Beep-Beep-Beep of the bus as we aren’t ready, or the trashed drawers of the young man who’s angry that his mom won’t present the favorite shirts – and the mom’s irritation that she already late for umpteen action items and doesn’t need more.

So hat’s off to yesterday being a success, even without knowing any bad things that happened to our wonderful caregiver as she took the boys on an adventure to hike trails they’ve never done with me, literally and figuratively.   Hat’s off to those caregivers who expose themselves to tough stuff like disrobing, toilet peculiarities and more on the journey to helping special peopel like W and J better reveal themselves.  And hat off to W. for making new choices, however else he drives me nuts with his little weirdnesses.

Autism has a side benefit of making us savor every baby step on the trail to progress, and all those who journey with us.  W is going to progress, and God help me, so am I.   So am I!

I’ve loved these days

Billy Joel ILTD sheet musicSchool begins today, and when we arrived back from vacation on Sunday late afternoon, instead of making voluminous action item lists in my remaining 36 hours, I allowed myself the supreme decadence, or so it seems, of enjoying wonderfully lazy family time around the pool, the TV and with our daughter.   Such supreme decadence – just being, and enjoying.  The words of a Billy Joel song have swirled around my mind all weekend as I savored all that is wonderful about family, my kids and summer.

“So, before we end, and then begin,
Let’s drink a toast to how it’s been
A few more hours to be complete
A few more nights on satin sheets
A few more times that I can say
I’ve loved these days.”

It was a fabulous summer and while I always castigate myself over not curing autism,
not trying or doing one more thing to build the boys skills, etc. – I am right now savoring my love of being a parent as I watch that life role subside and new paths open for me.   Yesterday saw us visiting the daughter’s new apartment where we’ll be helping her move in a few more days.   In a stroke of great karma, she’s going to be living across from a wonderful yoga studio I’ve visited before, so I took that as a good sign.  I watch my active parenting years draw to a close and simultaneously wonder  however did I ever get this old, and whatever will I do with myself as time unfolds and I can capture new opportunities as I see my friends doing – even those with autism in their midst.

Everyone says they love being a parent, but for me, it’s bone-deep and both a self-definition and a salvation.  Parenting turned me from a rather haughty corporate type and rounded the edges of who I am.  As I walked through our daughter’s city-vibe world I savored how  I’ve so loved these days  of being a mom, her mom in particular.  I felt myself looking over my shoulder to see someone who just a few short years ago was once a squealing baby-ball of pinkness in my arm,, now amazingly a beautiful functioning adult.
I hope I can say the same about the boys when I let go and see them accomplish something fine without me.   As we played Uno together with the boys one night vacation and I watched Will remember a few skills like how to deal and count out 7 cards, how to match cards, etc – I felt the same;  that pride in bringing a life into the world and hopefully making it better by doing so.

Goodbye summer.   Although this week’s hot weather will remind me you’re not far gone,
and thank heaven for the backyard pool on 90 degree days for J., it’s time to turn the page to school things and our life’s work, whatever that is.  But when the demands get high and the pressure is on, I can reach into the bag of happy thoughts of car trips to get fried clams, to walk the shore,  to revel in small towns and their quietude, to soak in vistas I’ve longed to know, and to see new paths.  Most importantly, I can remember the feeling, not just the experience, of opening myself up to moments where simple people whose grace gave me some of my own – all colored in the glow of warm summer light, and be transported to wherever new and exciting I’m meant to go.

I’ve loved these days.