We slog through autism and on the dark days think we aren’t getting anywhere.  And then it happens.  They learn.

Last night W. self-corrected his choice of drinking cup and after maybe 1,000 reruns of the video model and just as many corrections from Mom, Dad and caregivers, he stopped going for the wrong one and did what he trained – “get the W. cup.”

I’m reminded of the movie “Parenthood” with Steve Martin where his son catches a long fly ball when he’d flubbed more than a few – when his teammates gave up on him – when his parent’s expectations were nil.  In response to dad’s incredulity, the mom says “well what did you think?  You only practiced catching that ball 10,000 times.”

It was W’s fly ball catch – and best of all, he KNEW IT- he knew why Mommy was especially happy, hugging and high-fiving and whooping and hollering.  W. lingered for about 5 minutes letting me slather on the praise.  He was beaming, and he knew why.

Here’s hoping we all have a moment like this today when as parents we stretch for that fly ball, and miraculously, because we did our job, it’s a catch.

I love the view from my office.  It’s on the second floor overlooking a sloped porch roof to the swimming pool at the back of the lot, and a grove of birch trees beyond.  In the spring the newness of lime green leaves budding on trees signals rebirth both worldly and internal.  Bluebirds like to visit as do cardinals, and while I’m not a bird fanatic, the fact the like it here makes me smile.  Summer’s heat makes the pool look inviting even if I rarely have time for a swim, and fall’s palette or oranges and yellows remind me of the time our daughter was born in early October as the pageant of leafy colors surrounded us.

Yet winter is the most special of views, as black and white contrasts from snow and branch, and reveals what’s at the core – inviting us to do the same.  Unfortunately right fully two-third of my view is snow bank where I can’t see much of anything, except windswept bluster rearranging the white stuff, and more snow falling on top of the mound.  And the storm window about that is 2/3 frozen over and frosted beyond a view.

I’ve pretty much given up hope of a snowshoe in NH today considering it’s probably zero visibility and biting winds – the kind the mean frostbite in minutes -are in the forecast.   The movie selection around here is lousy and while I’d love to see “Wild,” being R rated the repeater box in the house (see earlier post) probably would gather another gem of a swear word to share with his teachers.  I baked so many cookies this week that any more are a diet risk.  We already did one favorite weekend pastime – swimming at the gym – yesterday afternoon and while J. could swim all day long, W. is likely to protest another forced lap-march today as he has to water-walk the same number of laps as his age, and Heaven forbid when he must walk my age-number.  The above of course presume we can get out of our driveway in today’s snows.

So, I watch the wind blow, I think about how I’m going to enlarge my guys skills while not getting fired for not completing work-work that I can’t seem to bring myself to do on a Sunday morning when there’s blog posts to write and chores undone.  I think about the transition steps not fully explored, the friend with whom I’ve been meaning to network on her kid’s transition, the organization doing local programming that might be a fit, the social story I’ve got on the to-do list today, etc. etc.  I so feel the storm, but I want the vision – and right now it’s blocked.

Time for a break.   Time to stand up and get more hot coffee.  Time to rouse the boys lest they sleep all day and god forbid stay up past midnight to hassle me at my worst hour and raid the fridge while I yell “get to bed!”.  – And time to notice that I can see my beloved view as I rise, on the move to somewhere different – and on the way to something new.

Echolalia is a comical experience.  For those non-autistic parents, echolalia is the repeating of text you just heard that is typical of those with auditory integration disorders.  The individual buys time in “repeating after me” in order to perhaps think out the words they just heard.  It’s common with autism, particularly the profound variant, and while many individuals learn other assistive strategies and echolalia diminishes, as it has with our guys, we still see it – to hysterical aplomb.

Friday night was like our usual here.  Library volunteering is first, where for the past 5 years I take the boys to the children’s room where they shelve picture books and board books (tasks not requiring reading of a library catalog number), and spray/wipe down the tables; followed by a trip to the bank where each boy practices signing their name on a check, walking to a teller and saying “Cash please” or “deposit please,” then completing the chain.  Sometimes there’s a fast run into CVS or the dry cleaner, but the last stop is the reward of a Whole Foods visit where the boys get to purchase their snack, usually pizza or chicken nuggets, as they complete the whole chain with words, wallets and counting dollar bills.

It was a very successful jaunt and we returned home as usual with the hubby having already poured me a large glass of wine and started baking the stuffed clams we always have as appetizer on Fridays before our fresh fish.  I was riffing on the day’s minor news items including the six fat envelopes just arrived from our detested new health insurance company who has amazingly found a way to pay just about zero of the boys claims for 9 months, causing me acid stomach and time I don’t have so chase down these people as I hold a metaphorical bazooka gun on the other end of the phone.  – We began ragging on why health insurance reform bypassed these idiotic third parties with the hubby saying ” insurance companies are just in business to screw the doctor and deny your claim.”

J. was nearby setting the table and as he loves to listen in on big people chatter and pick up on the most emotionally intoned words, immediately began his “Screw the doctors!” “Screw the doctors” repetition, going on for at least 20 minutes through dinner.  It was hysterical at first, and even when we tried to replace it with other mantras like “Job helping” (our words for chores he was doing at the time) or “Help the doctors” – J wasn’t fooled, with this little gleam in his eye.

Full disclosure – a few weeks ago the repeater box text of the day was “God DAMN it.”  Emphasis on the 2nd syllable. – And yes, I hate to admit but W. enjoyed the “F*** this s**t” mantra in the not too distant past. (did I say that?)

Consequently we don’t do R rated movies with the boys present in the room and restrict our movies experience to those where the repeater box won’t get filled with the above style gems.
Which is rather a bummer as I think about how on God’s green earth I’m going to occupy the boys for the next 72 hours when we’ll likely be locked indoors again with 18+ more inches of snow, school cancellations and plenty of (overdue) work tasks.

Just another silly moment in the land of autism, and a scene for that long deferred novel.

Busy work day meant clockwork like precision and sitting in front of the computer earlier than even the usual early.  Yet buried within the business are simple victories – the kind it’s vital for us to honor, because they mean IT’S WORKING – what we do, the slog, the fight and the way stations on the path toward capability.

J independently arose and found me when my iPhone alarm went off at rising time.  I’ve stopped setting his own room alarm as there are too many confusing buttons and he kept making mistakes in the dark – putting “buy alarm clock” on the growing list of dumb tasks to be done sometime when I get time -which is never  (like sewing that button on his khakis that say in the sewing pile for, oh, 2 years.)  So I figured it was a great stop-gap learning that applies to other moments in the day, like when it’s time to stop painting and clean up.  Yay for J!

W.’s toast buttering skills, in particular the diagonal slant to the knife, are greatly improved to the point that he did his toast far better today – he’s now consistent in understanding toast slices placed “next to” each other on the plate, vs. on top of each other or other arrangements.  Even his school commented after cooking class the other day that his spreading skills are coming on strong.

J. got his own cereal, bowl, and spoon and successfully ate it as his snack yesterday. OK he forgot the milk but heck, this is good.

W. independently tied both shoes in a separate room from me and then came to the kitchen to make his breakfast.  Yes I did tighten one but he did it all.

J. independently got his toothbrush and started brushing last night.

W.’s use of the correctly labelled W cup at the sink for his water is improving, and probably about 70% from a less than half the time accuracy of maybe 3 weeks ago.

Progress, not perfection, always.   What we’re doing is working!

Are we ever really prepared for what an adult future may bring to our autistic kiddos?  I’m an inveterate planner, but really you always wonder – at least I do.  Yesterday’s doctor visit with J. brought up the topic when the meds prescribing neuropsych ran down a rather banal template of questions on whole life issues to be considered, as part of a holistic clinical practice.

The big picture directions and issues for me are pretty set, although we have a few months more before it’s tactic time.  My kids will need some form of adult day program setting and the path has a few more options for J. in particular.   I also know plenty of what I don’t know – which is, I don’t know much about the residential component – since I’ve kicked the can down the road a bit in deciding that I want my guys to live with us at home for at least 5-10 more years.

A seminar I once attended by my local DDS office really pushed residential settings more than job or day programs as being the first priority for a happy adult life. – But during these snow-delayed days when schedules are so jumbled, when Mom is solo handling both parents’ tasks and does her usual falling asleep at 8:30 pm because she’s exhausted for burning the work candle at both ends – my guys fall back on their most loved pastimes.  J’s basement spandex swing.   W’s computer.  And of course our refrigerators that are raided so readily when Mom is asnooze.  Even thinking about taking them away from the boy seems unfair, when they have so few pure loves.

Then again I read other uber-autism moms’ directions on Facebook groups and try to keep an open mind about my own destinations.   The Boston Globe did a piece recently about a mom who started a house to help special needs kiddos transition to independent living.  There’s a similar facility in my town but for me, it hasn’t seemed a great fit since transitioning to an unrelated transition place kind of doesn’t make sense, at least where I’m at. – But it made me reexamine my expectations – as did an extended chat at W’s basketball game last week about other things she’s doing with her Downs kid.

As I watched myself totally jumble the morning routine today – W’s shower done way early so I wouldn’t have a second day in a row where J’s bus beeped while I was sopping wet in my shower uniform (underwear and sports bra) as I was assisting W, leaving me like a freezing drowned rat putting J on the bus – and each boy doing new self-preparedness things for the day, out of order – I’m mindful that sometimes the best thing about preparedness is being able to violate the known order and just go with the day. – It all worked out, actually quite successfully, as most of the time it does.    A lesson there?  Yes – and a sigh of relief as I context-switch into the next column of action items on my daily page called Work.  And maybe even the column that says Personal, too.

My mother the inveterate list maker gave me the gift of the action item list.  She had about 5 notepads around the house with various lists, and separate journal books beyond those.  Write it on the list, she’d say, and it will get done.

Structure is my godsend.   It’s how we got through the past several snow days until yay, the school bus arrived 10 min ago.  It’s often the antithesis of autism, at least the profound type with which I live here.  Autism means surprise, constant deviation from the norm and demands intense flexibility and creativity.  Structure keeps the expectations known for everyone.

Today I’m grateful for the most wonderful skills trainer in the world who showed up as expected yesterday for work, on a week here where 2 of the other 4 helpers cancelled already.  Her focus on individual work with the boys was like school – comforting, known, engaging in exactly the right way for each.  It continued my little efforts at doing the same while putting my finger in the dike of work at the same time earlier in the day.

My own day today is highly structured, and I find when I’m busiest, most structured and usually juggling 15 different things – I’m happiest.  So here’s to the rest of my own daily structure -and a tip of the hat to those helpers I am so very lucky to have in advancing both our skills and happiness.

Yay!

As I settled in to sleep last night after a long snow day – knowing school was cancelled again today, and the hubby is gone and leaving with the two wonderboys and one snow blower – I entered that loving, dreamy state called Counting Your Blessings.  it’s when the bed is warm, drowsiness makes you stop the obsessive to-do list making, and you look back over the day in gratitude that the problems you have are yours, and no one else’s.

J. spent much of yesterday’s snow day with a new favorite blanket wrapped over his head.  OTs I know have said this is a move likely to intensify whatever sensory moment he was enjoying.  I worried at first when I saw this, then noticed the grin on his face, and an almost ethereal look of peace.  There’s a fine line between the ease of a day that has white space in the margins, and the confusion of too little structure and not enough to do for the kids who lack the ability to jump-start recreation on their own.  But really for much of the day he was in that zone – calm, relaxed and going with the flow.

Flexibility.   It’s an asset supreme for those of us with kids on the spectrum, and something J. showed in spades yesterday.  It’s something I didn’t think I had in my growing up years, but certainly get to practice now.  W. has the flexibility gene, too, although he needs more structure than J.  I watched W. drift from computer to beaded string play and back to his iPad yesterday as both parents struggle to mind the kids while doing the work across myriad time zones.  And as he ran upstairs to disrobe after dinner, W. even dressed himself in shorts before emerging from upstairs – a sign that all those social stories and repetitions of the household rules are sticking, at least sometimes.

Today especially, I vow to use my assets and those of my kids creatively, to meet the day and make the most of it.   Both boys’ generally easygoing nature and ability to learn, at however slow a pace, is a gift. So too, are my own abilities to creatively assemble the components of the day into just enough structure to meet needs – and my ability to flex that structure as time passes, and organizational skill enough to stuff 10 pounds of life into a 5 pound bag always.  Their love of something new which we often call a Car Trip, but is more than that – their desire for adventure from within the confines of the known – is something I cherish and not every autistic kiddo has.   And thankfully their love of sleeping in lately, like typical young adults, is a blessing for the overworked mom who is already spending way too much time blogging and not back on the work tasks.

Rather than sitting on those (ass)ets, I’m hoping to be mindful today of all that they are – to call them out, if I’ve forgotten them in both my kids and myself – and look forward to tonight’s dreamy Count Your Blessings moment where wrapped in the blanket called family, I smile at what the day has brought.

After yesterday’s semi-miraculous NE Patriots win through the efforts of a little known, rarely played rookie,  what more do we parents of special needs kiddos need to remember except to do our jobs.  Then growth and miracles happen.

We’re stuck at home on a snow day yet again here and I’m late to work, and juggling tasks that really take more time and uninterrupted bandwidth than the day will allow.  I’ve made my daily action item list of things to accomplish, both for work and with the boys.  I’m also mindful of yesterday’s snowshoe where W. flopped every 10 feet on a quite easy trail he’s done at least 10x before.   It was one of those obvious “I’m not into it, Mom, and I’m going to show you with my behavior” days.   And while he was OK during Super Bowl watching, he did manage to sneak downstairs and do a major food raid while the rest of us were in our bedroom watching post-game interviews.  I worried about what this means not only for securing the cookie containers in the freezer right now, but for future life planning in non-home residences. – How can I possibly prevent food steals for the rest of his life?

I’m also mindful of a chat I had with a friend on an hour-long car ride back from a social event about transitioning the boys to the post-age 22 services world and the challenges I have ahead with securing appropriate adult placements.   A Boston Globe story yesterday on a wonderful parent-founded transition program for kiddos who likely have greater independent living potential than mine was yet another example, if I want to beat on myself, I can do it real well.  I start with how I haven’t been one of those parents who founded an autism non-profit, haven’t discovered a gene that leads to a cure, or in obvious ways made the world a better place for those of us with autistic kids.  Perhaps like many of you I’m a self-flagellation expert.

But for today, I’m working to focus only on Doing My Job.  Which for me, means continuing on the many “practice self care skills” routines we have going here each day with ADLs, providing enough structure during a snow day that the behaviors don’t completely drive us nuts, and setting a few modest other life-learning goals, such as practicing making their own sandwiches at lunch.  We’ll also fit in some other life skills like cleaning up the house a bit and using speech vocabulary in context, such as in “pushing” the snow, presuming it ever stops falling and isn’t measured in feet again.

An unsung football rookie saved a game for a team filled with stars who otherwise grab the glory.   Today I’m going to do what that rookie did – practice, train and prepare – so my boys and myself can find a path to doing our jobs, and furthering our team in the big game called habilitation.