It’s day 2 of back to school week after February vacation, which is always a good thing as we embrace structure and routine.   Day 1 featured an unexpected kid financial paperwork matter which sucked up 2 hours of time I didn’t have, capped off by a respite worker cancellation which further crimped work time and put me more behinder (apologies to the grammar police).   Welcome to my world, special needs parents.  Isn’t this the life.  In my down moments I wonder if the rest of the world understands what it takes for us somedays just to get it together for the most minor of activities.

Autism being a disorder where visuals help, I’m instantly drawn to the same efforts that help my kids.   Pictures.  For years I’ve guided my guys in understanding daily routines using the ubiquitous Meyer-Johnson pictures arranged in a strip, with some prized reward at the end.  Well here mine for the day.   I’ll skip over the 1st 15 cards which would basically say Work-Work-Work-Work.  The reward is the view from where we are, and where we’ve been.

Mountains call me, and remind me there is a gorgeous vista with autism and all things. This one was from Sunday, when we summited a minor peak in NH’s Waterville Valley made tougher by freshly fallen snow that required a mile of trail-breaking.  I see it and instantly I know no matter what crap is before this on the schedule, there IS a prize later in the day.

On Sunday’s trek, my good knee was killing me and each squishy step down a foot or more of unconsolidated snow made it twist sideways – not fun.   The hubby was equally challenged and W. was flopping on the easy part up. – But we made it. The real star of the day was J., who of course broke trail in the hardest part practically without breaking a sweat.   We also rotated out the 2nd position of who was behind J. for harder stuff, and took breaks.

Really seeing your accomplishments is so powerful, in autism and all things.   On Sunday it was sitting at a chilly yet sun-bathed ledge looking out at 3 peaks we summited last year, while ringed by two other mountain ranges to the left and right which we’ve also done.  It was seeing W. enjoy the summit after the flops, and J. smile – while I rested assured knowing that although the walk down was going to kill my knee, we all made it on a day when it was tough. – Yesterday it was seeing that a yucky work situation was ending and over the course of a few years I really did help the player in question.  And it was seeing the daily improvements that we as parents of special needs can relish if we but open our eyes to see them – in my case, J. being able to take out the trash with only the most minimal assistance, and W. verbalizing a genuine choice about what he wanted for the afternoon.

So here’s to another day of the slog, when something will hurt, the trail breaking won’t be perfect, but my guys are increasingly more independent, I have trusted help, my day will assuredly have some surprises – and there will be another vista just like this one as my reward.

Who knew? – that 7 or 8 years later, this chaotic water park type of environment not exactly fine-tuned for autism – one that was formerly so aversive my guys sat on the edge and didn’t participate – would be W and J’s favorite day of autism camp week.  Chalk that one up to try, try, and try again – and sometimes even autism gives you a surprise.

Who knew?  that other people actually can cope with my guys when they deviate from the plan, as the camp director had to do on snowshoe day when W. protested wearing his bib overalls.  News flash, Mom – you don’t have to do everything.

Who knew? that when you stop micromanaging, and let go – even when for years, the way you HAD to get your kids through the day was to duly consider every minute sensory experience or fine-motor process at which your kids are delayed – your kiddos cope just fine.

Yay!

So fortunate am I that my area has an age 14-22 camp during school vacation weeks specifically for autistic kids.   J’s done it successfully for several years, but with W., his disrobes, bolts and impulsive behavior led them to provide shall we say a less than welcome regard for my most special guy.   Surprise surprise.

And as I ponder over the still-lingering beautiful memories of my own autism camp, the parents retreat, I’m mindful of how much I got out of going away from the known and meeting new people, opening up to new perspectives etc.

W’s very real gains in clothing tolerance and fewer bolts lately made me go for it and sign him up for this week’s full camp – not just begging to allow him to accompany his brother for a day or two this week. – Unfortunately the daily activities lineup doesn’t get published until after signup and funds payment, so I learned after the fact that the agenda fits less with his interests than most earlier camps.  Meaning I may get one of those dreaded glares at pickup time, or the calm yet persistent request that I move over to this corner here and wait a minute until The Director can regale me with a litany of my guy’s escapades.

But just for today, I’m trusting that preparation, maturing – as much as a developmentally delayed guy can – and the fact there’s a restaurant trip in the mix may prevail.  Today camp is going ice skating, something we did long ago with both boys but nixed due to their fears when their feet are not solidly on the ground.   I just printed a pic of ice skating from Google Images to help explain the event.  For J, he may not love it but he’ll try.  For W. – heck if I know.  I just hope the rinks is cold enough that he keeps his pants on.  Said only half-jokingly.

So here’s to camps, autism camp, parents camps, and all ventures into to green world that take us out of our element and make us try something new.  Here’s to adventure, learning, and something out of the ordinary.  Here’s to uber-parents being able – or trying, anyway – to let go and let others help.   Here’s to pathways to normalcy, and living opportunities while we can- meaning that in 13 months I wont’ have this camp option, so I should take it while I can.

And here’s to hopes and prayers at that at pick up time, the stories they tell won’t be bad – especially they get to tell them to Dad, who owns pickup today. 🙂

Ah, the relaxation of a retreat, and the reality of reentry – to a life that’s rich but messy.

The parents retreat taught me much, but it didn’t mean the boys suddenly greeted me in full sentences.  Nor was I spared from dirty dishes, a carpet strewn with foam beads – the favorite pastime of the year – or food steal attempts as soon as we were home. The guys still required prompting to say goodbye to their sister who’d lovingly cared for them and even figured out how to use the snowblower through 14 inches of new white stuff so the driveway was clean enough to enter with a car. Neither one wanted to jump up and practice their “push” word by shoveling the sidewalk – although they did accompany the daughter while she snowblowed, which was amazing given the near gale force winds.

New Facebook friends greeted me after the weekend which was sweet, and made the memories linger.  But one not so favorable learning was noting that many of the parents I respect did not have their post-22 kids in day programs – they built their own.  Nor were they even considering group homes or other group residential settings.  Many experts on my team encourage both, and I supposed to some extent I have been planning that as well – although I’ve kicked the can down the road a decade or more with residential aspects.

Yes, most certainly I truly want what’s best for each boy’s long term interests.  But wow, custom-creating two active day programs for guys with different interests, while regardless of income needs, I know I need intellectual engagement beyond autism? – Hmmm.

I have to trust the wisdom I know is inside me, as those others have done. And that while there are paths through the wilderness, I have the ability to choose from among the many – and ask for help in the storm.

Armies don’t need to carry guns and swords to defeat the enemy.  Sometimes a puzzle and a spirit of teamwork is all it takes.

Yeah, the puzzle metaphor with autism is old hat, but today I’m living it on a new level. – I’m in the midst of autism’s finest in New England – professionals, parents and advocates at an annual retreat among whispering pines (snowy ones today).  Last night after fabulous food, sharing and dancing the team set out boxed 500-piece puzzles in an adjacent room.  I’m far from the puzzle master that my W, is in his ability to see shapes among the whole.   But with the help of about 10 people who came and went throughout an hour or so, we conquered that puzzle.  And is was sweet, as apt for me as I look at those macarons in the picture thinking about how my own attempt at them at Xmas fell short.

What a living, breathing example of the power we bring to each other.  Still 5 hours to go of this energy drink of a session, and far too many learnings to post all too soon.   This week’s daily affirmations will center on themes that resonated for me here:  transitions, team-building with professionals, life skills as paths to work skills, are group homes a bad thing, how our professional lives help or hurt our abilities as parents, the unique energies of men vs. women, how our kids teach us to be parents, using strengths to defeat weaknesses – and so much more.

For now, I’m ready to let the rest of my puzzle team help me put more of my own together. That we can all do the same, every day, always.

What else to write on Valentine’s Day but a missive about love.  This one goes out to the siblings and family members who support us, and allow us to be whole.  The ones who push themselves and do the dirty work, literally, that make our journey manageable.

Our most wonderful daughter is watching the boys this weekend while the hubby and I attend a retreat for parents of autistic kids – a retreat we haven’t visited for about 8 years given child care issues when the event moved to winter.  Yes I was my usual basket case getting out of the house and readying just about every possible item she might need to know.  Laundry is first off.  Not sure why I feel the need to wash every item of apparel before I leave for 24 hours.  And of course a trial of all the flashlights in the house she might need when the anticipated foot of snow arrives and a power outage might ensue.

But the minute the car turned down the narrow rutted street to the secluded camp where we meet, I felt this rush of – peace.  Calm.  And a knowing that being away for thirtysix blissful hours will make me a more effective parent for the next year or more.

Here’s to those who show their love by giving what is often hard, messy, and inconvenient to ease the journey for us.  That’s the best valentine of all.  And here’s to knowing that my own stepping back sometimes to let someone else manage the boys for a brief while is a way I can love them back.

Aren’t our lives all like this.  My yesterday totally got off course when J. had a surprise after school activity for his play scenery production group – something he so loves because he gets to paint – and a light snowstorm meant horrific traffic.  Instead of doing about 15 other overdue work things, I sat in over 2 hours of traffic.  It meant I was the job coach of the day at the bakery job.

Such a gift that was!  He still need support, but less – !  the programming we’ve painstakingly worked for the past year or more  -encouraging greater independence in scraping cruddy cake pans of their crumbs, then greasing them – is working!  He’s improved his ability to don an apron and gloves and best of all, he’s using words to ask for help – not as many words as I’d like but heck, he’s talking! He’s more able to visually identify still-dirty pans that need further scraping than before.  And while the job coach still has to make sure his visual inspection and accuracy remain strong at both scraping and greasing, he’s better than 8 months ago when I last was there.

Thank you Boston traffic.  I’m so glad you helped me focus on what was most important today – and let me be part of the incremental growth through autism.

I subscribe to a daily affirmations Facebook group for hikers, run by an author I have the privilege to know and admire.  Today’s quote resonates in my overly busy agenda:

“Whatever you’re thinking – think bigger.”

May we all find the way to do that with our autistic young persons.  Today and always.

Hey other special needs parents – curious how you balance the need to focus deeply on your kids’ specific issue(s), versus the need to scatter-shot it – and make incremental progress on a variety of fronts.

I skew toward the former but really lately, it’s not working.  My one more thing disease hits.  I awake with a highly focused agenda, usually work, and readily am diverted into just one more therapist email, preparation step so my kids can rehearse some micro-skill I’d like to accomplish, or readying health food like my cutting a pineapple so they’ll reach for fruit vs. an extra helping of cereal in order to keep weight gain at bay.

Then to hell it goes.  Focus is some fleeting objective allowed other people. I yet again scatter-shot myself across a vast number of domains work and personal.  Sure I get a ton of baby steps done toward important goals – which is actually a good thing – yet the intensity that I love and that’s required for quality thinking is gone baby, gone.

Yet in a Facebook era where fast, compact snippets of thought, writing and life really seems to have taken hold of most functions, be they work or personal.   Do we get more done this way?  Certainly seems to be the way many of us must progress. – Hmmm.

“It’s hard to work all day,” the hubby said, in one his more profound commentaries on life.

Not to poke fun at him unduly but here at 9:30 pm when I’ve been at it since 5:30 am slinging out the work, getting the boys shaved/showered/to dentist appointments, driving them to school both ways since we had no transportation in our town today, making dinner and then more work til 7:30 pm, it’s hard to get motivated for another shift.  I’m tired, and grumpy, the way parents can get when there’s way too much to do, and you feel like everyone else gets a life and you don’t.  When your eyelids droop and my fingers type errors more than words.  When you want badly to just chuck it but the angel on the shoulder says “just one more thing”

In a prophetic move, the battery died on this laptop, and almost on Mommy.  I had to restart them both to keep typing here.  How apt.

W. and J. had great days today where few parents sent their kids to school so they had plenty of teacher attention. I found it odd that one principal thanked me for bringing W. to school. I hear this a lot from teachers – when there’s no transportation, kids don’t show up at school.   I mean, really people.   Don’t you want your kids to learn something, even if it means you have to get off your arse and juggle your day a bit to get them there.

I suppose maybe a snow day lets them avoid the monotony that is autism.  Repetition until you get it is enough to make you want to scream sometimes.  Over and over and over we go with the same two word phrase or skill to the point of utter mind-numbing.  But for my guys, and probably me too, it’s the only way we make progress.

We keep going around and around, like hamsters in a wheel, brushing teeth and tying shoes and paying bills and writing press releases and phoning appointments and making cereal for snack and vacuuming the floor and practicing counting 4 forks at dinner and wiping the table and doing more emails and chasing the boys out of the cookie jar in the freezer and sorting the laundry and….

Until they get it.   Like tonight, when I forced myself to videotape the boys and create a video model of a troublesome skill – choosing just “one” item, instead of a wad.   Usually they fumble or don’t pay attention, but tonight when it was time to tape them – each guy was right on task.   Lucky break?  A day full of practice? Because we went to school today with structure and heaps of 1:1 attention?  Mommy’s reward for working hard?

Now I’m buoyed to keep on keepin’ on, with some sleep to fuel me.  After just one more thing. 🙂