Monthly Archives: August 2012

Camp Heroes

Autism brings out the best in people. Meet Brian and Brian.

They’re thirty-something’s with families of their own – Brian on the right was even a newlywed – who took a full week off from their lives to be one-on- one camp counselors to my W. and J. Talk about embodying Christian love for your fellow man. It still makes me tear up, to think two strangers set aside their lives, without pay, just to ease the burden of someone they never met- with a disability whose challenges are unpredictable and often unsavory.

Wow. Would i have the capacity to love and give so freely?

Camp as it turns out was a fabulous experience for the boys. Each bedtime without them I wondered if I’d get “the call”- that they had run away in the night, or that Captain Underpants had pitch-tossed his briefs one time too many. Instead apparently my guys were easygoing, happy, tried new things and were “well-mannered.” The latter certainly was not an adjective I’d ever applied to my brood.

J even did what I had stressed about and prepared him to do for four months: take a stand-up shower instead of a tub bath. Since camp only had a shower house, he had no other choice. We gradually desensitized him with our hand held, European shower head. Camp also helped us by having someone go take a photo of the actual shower stall and fixtures, then email it to me, so i could make it into a social story. I didn’t want the shower to be the epicenter of the week so i filled the story with other cool things to do there: swim, boat, roast marshmallows, have campfires. We read the story over and over, at school and at home.

On shower day Brian told J his Mom would be so proud. I hope J heard him, and beamed like he does when I say that.

One Brian told me you could tell W and J were raised well. I tucked those words and memory of that moment in my heart, for forever-keeping. I’m not sure he’ll ever know how much that meant to me.

Day to day, it’s hard to see that your kids with profound disabilities are making progress. Then the wind whispers, you let go of their hand, and they walk off beyond you, to where they’re meant to be. Which, amazingly, is more capable than when they left you.


Without them

Amazingly my twin autistic wonderboys have been at camp for six whole days now – without me!  Wow.  I was expecting the call long ago that they bolted into the woods, had a nuclear meltdown, or the counselors were simply sick of their quirks and sent them packing.

Without them, I’ve had a week of space and time to catch a play, a museum, time with the neurotypical daughter, self care errands like the periodontist (OK that was not my idea of vacation fun), and husband-talk.  Having dinner solo with the hubby last night, no kids, was weird.  Shades of the future when child rearing years are done and it’s just the two of us, like it was at the journey’s start.  OK I worked a lot while they were gone too; kind of what I do with myself.  But there was a white space to the margins that was soothing, yet also lonely in a way.

Without them, I’ve wondered what they missed about home – what they’ll first crave when back at the cradle – what they learned.   I always hope my boys know they’re loved, even when they’re not with us.

Tomorrow morning I’ll no longer be without them.  They’ll probably smell like real men after a week in the woods, and probably weigh 10 pounds more given the stash of cookies W’s counselor showed us as his secret behavior-inducement.  I’m already thinking about the long soaking bath I’ll give J., and whether Will still will crave his computer and his iPad.  – Yet my life will be complete, in a way – and the source of what has made me good, focused, and whole will be back to further reshape me into the person I’m meant to be.  I know they’ll be things W and J will do that I will not entertain as happily.  Yet refreshed for the journey, I’m eager to see what they are – and bend the sapling into a mighty tree.

What I Miss About My Autistic Child

There are empty plates at our dinner table this week while W. and J. attend Camp.  I thought the sound of my exhale post-Camp drop off on Sunday would echo down the Eastern seaboard.  After days of planning and packing, they were off.

But something happened along the trip home – I missed them. I still do, even though we enjoyed the leisurely drive home thru local wine country, and have both tackled long-overdue projects and errands.

I’m collecting a rolling list of all the wonderful things I miss about W and J. this week.

  • chores they do, and I don’t.  They empty the dishwasher, wipe the table after meals, and put their dishes in the dishwasher.  (reading this, oh college student daughter of mine?)
  • taking breaks – When the bus beeps at 2:45 pm, I get to force myself to stop, take 15 minutes and be human, instead of an automaton answering email and dealing with seemingly perpetual work demands as a work from-home freelancer in a service profession.
  • walks – I made my husband walk the neighborhood with me last night after dinner.  Even though my guys seldom talk and J. likes to walk 10 paces ahead of me, they’re my exercise companions.
  • pure joy at the simplest things – J’s favorite cranberry cereal in which he pours the milk to the tippy-top then drinks 2-3 bowls of it;  W’s Leap Pad that he sneaks away and plays with delight.

We grown neurotypicals complicate life way beyond what’s needed.  I’m storing all these moments when I miss W and J in my heart, and hoping they feel the same about the little things I do for them.


Camp – Even For Autistic Kids!

Oh so quiet around the house today, our 2nd day of the boys attending Camp Fatima’s Exceptional Camper Week.   What a gift – a full week for the boys to attend camp like every other kid, with one-on-one assistance – while Mom and Dad luxuriate in time away.  Well, for us, we luxuriate by working like banshees at the crack of dawn, but I must say that not having to wake at 6:45 am to shower and shave two grown men and in W’s case, to make sure he didn’t throw away his underwear, is restorative.

Friends have asked if I’m worrying.  Yes, and no.  I’m framing a list for a future blog of all the things I miss in caring for my special autistic 18-year olds.   I do wake thinking about them, wondering if theyr’e having fun, hoping the loud music at the dining hall isn’t too much for J’s sensitive ears, and hoping W’s “going commando” instincts isn’t wearing on his aide.

I’m also overwhelmed by the two 30-something young men who are our boys aides, and who left their wives and in one case, their young daughter for a full week just so that I and my husband could take a break from the daily rigors of caring for someone with autism.  What better demonstration of love and charity toward a stranger, and that stranger’s (even stranger) kids.   I hope W and J are giving them a few moments of joy, like they give me.  Maybe in time I, too, can find a similar way to give back to the world,  as these young men have done for me.

Trails, Trials and The Road Forward

Trails are spelled much like “trials” for a reason.  They’re one in the same – it’s just an adjustment of letter, or an attitude, or a feeling or two.  Over the past two weeks we’ve surmounted two major hikes – Isolation and Owl’s Head – that are accomplishments for any person, let alone those challenged with autism.  I’m still glowing with pride over my little wonder boys and their ability to put one foot in front of the other, and move forward.   Pardon the moment of parental crowing, dear readers.  When life is tough, the hubby and I say to each other that while our boys can’t read, struggle to count and can’t open a soda can or a granola bar independently – they sure can hike up the mountain.

And that’s what we are all doing, truly.  My photos of our journeys usually don’t do justice either to the natural beauty of the day, or to my sons inner beauty, since their ability to look at a camera and focus is limited.  This leads to lots of “funny nose face” images, or others where they’re behaving in ways I’d rather not memorialize, like the hands going to the pants and so forth.  But look closer.  The top of the above image shows Boot Spur, a side peak south of Mt. Washington where those who struggled to emerge from forest and shadow are treated to a 360-degree view of the vast beyond. We sit looking at our future, knowing there was about another 2 hours beyond that to the actual destination of Isolation, and yet seeing the path that we all know is very doable – with views every step of the journey to delight.

Today is a weekday, workday, and busy day.   Disrobing is still part of our daily trek with W., and each day we continue to work on behavior-training to help him learn to keep his clothes on where it’s appropriate.   Self-stimulatory noises are still part of J.’s path, as are occasional slaps to himself, and a tendency for hands to stray to the private parts – behaviors that rise with stress levels.  Each boy’s list of activities of daily living they must grow loom as large as that mountain.  At 5:10 am as I write this, the day’s to-do list has only begun, and I’m already half way through the coffee pot.

Yet there is a trail, and it is only a trial if I misspell that word.  It is leading forward, as surely as all others we summitted.  And there is a view to savor always, if we keep looking up to see it.  My challenged boys had the fortitude to spend 12 hours of one foot in front of the hour to get to what you’re viewing above- 14 hours, in the case of Owl’s Head – even when the pebbles beneath them slid and they were tired or afraid.   That’s a reminder to me at least of their patience, strength, and perhaps even trust in me as we march on toward capability and happiness.