Monthly Archives: June 2013

Respecting Special Choices

Bliss is the only word for today. I sit poolside while W. and J. swim and relax with me, for over 90 min now. We’ve done an impressive lineup of overdue chores, some left by the absent husband who’s annual guys weekend took priority (Ahem), and some just bugging-me items like that stack of clothes on my bedroom chair or changing out the boys drawers from winter to summer wear. Heck it’s fine with me if he never comes home.

Last year this he ‘s gone weekend was really tough, the start of our disrobe battles. This year, W and I are at a good detente on the subject. I still would wish for far wider choices in attire and the upcoming family wedding still worries me, and makes me want to build some kind of program in advance so he’s not wearing his PJ-style baggies with his shirt and tie. But for today, the sun is shining, he and J are singing a made-up silly song as the walk round and round the edges of the pool from shallow to deep end. Everyone’s happy, even me. Imagine that.

J’s scratch-til-he bleeds behavior has been low this week and I know this week’s daily swimming has helped calm him. Still haven’t totally figured that out and although I spent no small amount of time liaising with behaviorist, PCP, autism physicians and doing their minor test work ups in preparation for (yuck, yuck, I hate the very word) meds trials – J too is at a good place.

What made the difference? Help, most likely. My lovely daughter was here for those priceless little boosts like giving the boys their evening snack Friday when I fell asleep @8:30 pm – and supervising dressing choices for church so I could get dressed myself.

Our fabulous skills trainer was here for 4 hrs Saturday helping J. paint the wood fence like he used to do 2 years ago when we had a grant for weekly help – and to my thrill J., while still needing a few breaks, did well and enjoyed the work. Call it a dream or a delusion, but my hope that some day I can start a Special Painters business where I employ him and maybe others like him lives on, at least for today.

But mostly I changed. My life isn’t perfect and I’ll never stop waking each day feeling that if I just did one more thing, the boys would be better off than they are. But I have new-found respect for each boy’s limits and preferences. There are worst things in the world than a young man sans underpants. And while the self-injurious scratching has to be stopped because no degree of a child hurting themselves is acceptable, I’m watching J’s good days and working to understand their drivers. Fortunately it didn’t take too much bitching to get school on board and thank heaven for the new state social worker network who truly has helped. I also have new eyes for little things he does to calm himself, or not – and ideas for how to help him get to the next better calming moment.

So bliss, stick around please, for at least another few hours. Long enough for the Supermoon to shine on us all as we walk ever forward toward the light of some unknown but ever present goodness in the boys – the light they are beaming back at the world. And me. Yes!

Peak Experiences – Five Lessons with Autism, and Life

Peak Experiences

Descending Mt Adams

I’m so proud of my guys summiting Mt. Adams, the 2nd tallest peak in NH and the hardest elevation gain we’ve done (4500′ feet.)  We hiked on Saturday, cancelling the usual speech and chores routine since the weather was peak. So too were many moments that day.  I could gaze at the above photo for hours.

Yesterday frankly I was more frustrated with myself over my slow speed on the tough final half-mile. Only now, really, do its lessons speak to me and to all of us parents of special needs kids.

  • Agility – the boys charged up the mountain like it was a walk in the park.  Even with autism – or maybe because of it.  Even W.  What’s more, they charged right on down, something that used to be so painfully difficult for W.  Even during the tricky parts.  Despite this being peak #46 of the hallowed #48 I exert extra care over them due to their autism.   Lesson: sometimes even the profoundly autistic can achieve. Even beyond their mother.
  • Fear – it clutched my throat as I looked up at 0.9 miles of rock-to-rock typical Northern Presis climb.   Probably because I sprained my ankle 3 years ago on a similar climb, but maybe because that tends to be my outlook on life: Fear first, ultra-planning and commitment, as a means to accomplishment.  I went so painfully slow that half – no, most- of the other hikers passed us by.  It made me feel old, and a little silly, but it was where I was at.  Lesson: “You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face. You must do the thing which you think you cannot do.” (Thank you Eleanor Roosevelt.)
  • Patience – J.  had it in spades as he stopped on command to slow his pace for his parents.   W. had it as he turned to watch and wait for me, still behind him.   Hubby had it as I kept apologizing for my slowness even though it wasn’t that bad really.  And I had it as I made it through, focused, stopped worrying about the autism and just focused on the climb – and on one step at a time.  Lesson: take one step at a time.
  • A Symbol to guide us – not to spoil the future post but an unusual icon in the Madison Springs Hut kitchen spoke to me, and became my guide on the way home.  Lesson: Just like Meyer-Johnson picto cards, symbols can have power.
  • Love – my favorite moment of the day was when W. waited for me to catch up, then as I neared, he bent down from his 6-inches taller than me height, made greater by a rock, and kissed me lovingly.  I couldn’t tell if it was concern, joy at the above-treeline wonder, a kiss as a way to request something, or merely a moment where he loved his mom.  I savor it regardless. Lesson: For all those who say the profoundly autistic cannot love because they lack words – hello, daughter’s 2nd grade teacher – here’s your proof.

The work day beckons, with behaviorist ABC data collection forms, state social worker paperwork, and the launch of the boys to school.   While I cannot WAIT to get back to our mountains, it’s almost as much of a gift to richly savor the above lessons, and how I might apply them to daily living.   Because – whether it’s Mt. Adams or zero-disrobes or no self-stimulatory slapping – it is good to have an end to journey toward, but the journey is all that matters in the end.

Bon journée, as they say in France – and bonne journye today and beyond.