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.

Gently falling snow outside my office window is masking the internal stress of a busy day, made harder by continued school bus and schedule disruptions with the Snowmageddon storm of four days ago.

There’s a saying in twelve step groups that everyone needs to spend 20 minutes a day in prayer and meditation, except for when you’re busy – in which case you double it.

So while my hair’s on fire with work deliverables and attendant stress from a tough situation I’m handling professionally, it’s a worthy time to pause, and do my version of the above.  It’s called Five Deep Breaths.

When the kids spill the milk, when the administrators say something inane, when the spouse forgets something I told him 3 times, when the clients say some balderdash ridiculousness and I have to reply tactfully – I take a breath.

When W. disrobes on the babysitter then proudly shakes her hand goodbye, as he did yesterday – as if we all shake hands buck naked – I laugh, and take a breath.

When J. spends more time with his hands on his pants than on his tasks, to the point it’s publicly evident shall we say – I may wince, but I take a breath.

When the health insurance rejects yet another claim and further delays its already long payment, adding one more item to the growing “when I get 15 minutes” to-do pile – I fume, butI take a breath.

When I sigh remembering the person of my past, the one 10-lbs lighter and with a few less facial lines and sags, yet the one who still fits into a killer dress from time to time and has such richness and joy to relate to others, and hopefully bring to them too – I take a breath.

Namaste, dear readers.  The journey of the special needs parent requires lots of taking breaths, and as I take mine, I feel yours.

My New Year’s resolution was to post a series of daily affirmation for parents of special needs kids.  Here on January 29, I may be a tad late, but I’m grateful for the “push” per earlier post to get started. 🙂

“Strength and honor!” was the battle cry of the Roman legion in last night’s rerun of “Gladiator,” the mindless movie of the night that was on TV as J. and I did needlepoint.  How much that resonated for me.   Strength – the experience certainly builds that, in spades, be it repeating the same elementary concept to kids who just don’t get it for the 3 millionth time, or cleaning up the grosses of bathroom messes.   Or tolerating those years of disrupted sleep when the kids just can’t settle down.  Or the endless school administration hassles over getting the I (individualized) in your kid’s IEP.

As for Honor – i’m mindful of just how wonderful my autistic wonderboys are, at the core.   Of how tremendous my staff of skills trainers and OTs and SL/Ps and teachers are, in seeing capability not disability.   Of my ultra tolerant spouse who puts up with my weirdo sleep schedule which usually includes falling asleep on the sofa 2-3 night a week, leaving him to do the nightly toothbrush and floss.  Of all the people I’ve met along the way who treat every human being as special, even my so obviously flawed guys (and me).

Here’s hoping I can have strength and honor enough today to carry me thought- carry us all through – and help W and J to grow.

 Snowmageddon 2015 here in New England continues, and as special needs parents know, it brings change in routines as well as opportunities.  Amazingly we weathered the storm better than anticipated, and as always these moments bring aha moments that point the way.

The snowiest, most locked in day went along better than expected, thankfully with our power and heat supply unaffected, and the boys tolerating indoor limited play options very well.  With “push” and “pull” concepts among the boys’ speech goals lately, the snows provided a great opportunity to “push it – push it real good” as the silly TV commercial says.  I was surprised how well both boys pushed and dumped the extra inch of snow left over after the hubby and I had plowed the first 30 or so inches before nightfall.  They worked on snow shoveling very briefly last year with a skills trainer.   Either they remembered well, or maybe it just came naturally.

We also got lucky in that the roads were cleared pretty quickly here, so by noon on Day 2 we were out and about in search of a snowshoe location and a lunch-out treat.  Car trips have always been our salvation, so when they’re not an option, I personally get squirrely.  So here on Day 3, when W. doesn’t have school but J. does, I’m breathing easier knowing at least we can get out and about.

After I weather a storm of any kind,  be it parental, personal or even professional, I find it helpful to step back and assess.   Snowmageddon showed me yet again the many wonderful things about my guys.   While their interests are proscribed and limited compared to a typical peer, they have pursuits they love, and a far better ability to roll with change than most profoundly affected autistic individuals – probably even better than me.  We had some magical moments at night where J. in particular rediscovered needlepoint and I was so impressed with the uptick in his visual perceptual abilities to place the needle where it belonged on the next stitch.  W. on the other hand, has finally realized that to get what you want, you need WORDS.  And a slap on the head to Mom if she is not paying attention, although last night it was actually a stare in the face 2 inches away from me, without the slap.  He still struggles to get beyond a repeated “I want……I want…..” verbally, and we still are working on the best prompt to get out of that – but for us, it’s progress and I’ll take it.  We all baked too many cookies, fired up the crock pot so that the scent of something rich and wonderful wafted through the house all day long, and played Uno games and old family fun that makes me smile just thinking about it.

Pushing it here for me has meant driving the clutter out of my life and setting work hours and work life so that there’s actually room for something else.   Snowstorms have a way of imposing other life priorities, although technology makes it so we can never truly get away.  I struck a reasonable balance, better than sometimes.    A recent work setback has me grateful for doing this even more.   While I really love what I do for pay, I’m crappy at setting limits in a “jump-how high?” profession.  I so loved being forced, if you will, to hang out with my guys, come up with ideas for a few new speech programs based on their challenges, and marvel at how they are so very patient with their distracted, always waylaid mother. They teach me about consistency and love, more than anyone knows.

I’m visualizing that snow shovel photo above and the “push it” metaphor as I segue into the day’s work.  Clearing the path of the snows in my life was easier than expected this week – and is setting me up for the next opportunity from tomorrow’s oncoming storm – literally and symbolically.

Hooray, at least on Tuesday.  W. wore long pants during a neighborhood walk!  thanks to the miraculous intervention of our most wonderful skills trainer.   She made it a choice – either your wear those tennis shoes you really don’t want, OR you get pants on in order to get your Crocs which oh by the way you left in the basement instead of bringing them where they belong.  How wonderful the basement is the usual path out the door to a neighborhood walk.

Unfortunately I couldn’t replicate the miracle the rest of the week, nor could school which I promptly alerted.  But that’s OK.  He walked down the path toward half-normalcy once, and lo and behold, those Crocs are in the same place yet again this morning.  Here on the “Fall Back” end of Daylight Savings time today gave me an hour to blog, bake bread and drink coffee, not necessarily in that order, everything seems doable.  It’s presently 39 degrees Fahrenheit here on a rainy Sunday morning in the Boston suburbs and I’m not sure I can rally the family rallied to do what I really want – hike – with 45 mph winds forecast at the base of the peaks, let alone the summits.   So we’ll be likely be off to church shortly, meaning I have a perfect opportunity to incentivize the W. man to get warm pants on – and if it fails, well, those Christians get to practice their non-judgmental attitudes yet again.

But wait.  I just whispered the H. word to the hubby – “hiking” – and the light in his eye sparked as did mine.  It’s been three weeks since we last were on the trails and I’m sooooooo missing the release and the sustenance of the mountains.  We drove north yesterday but by the time we got halfway the rains began and it didn’t seem fun or prudent to embark, and with only a few hours or daylight left.  -Hiking today most clearly would give us an opportunity to drive the pants agenda as the winds wouldn’t be safe unless exposed skin was covered.  OK the wind have just howled here. Yeah I know the H word is pretty impractical.

Beyond Hooray, and the treasuring of small milestones, another “H” word – ‘hope’ – comes to mind.  How much of this journey in parenting a special child relies on a massive dose of believing, trusting and hoping you will endure the yucky moments, and finally near your goal.  For me, much of that is learning  that “help” is just as important an H word I don’t use nearly as much as I should – when events like this show me it’s less a sign of weakness and more often the smarter choice.

On a Monday morning full of technology hassles that have now made me way, way, way late for the day’s paid work, it’s more important than ever to remember my #1 priority – why I’m here – and why you should visit me again, dear readers.   I’m Twin Mom, and while I’m much more – as you are too – my role as autism mom has forever changed me.

Some parents of autistic individuals have autism as their personal bumper sticker.  Others start foundations or write legislation and actively assist the broader autism community.  My personal mission is perhaps an inch wide and a mile deep.   I hope to share my story of parenting twin boys on the spectrum through to adulthood as a semi-balanced human being in the hopes you will feel validated, maybe learn something, or if nothing else, know you are not alone.   My W. and J. are the light of my world, and when the light is dim, that’s when they do something remarkable that shows me how genuinely gifted I am that they are mine.

Perhaps it’s that I’ve needed to make money so I didn’t have the ability to quit my job.  Or that I was just too overwhelmed surviving the twin thing.  But unlike some parents of autistic kids, I didn’t discover a genetic breakthrough.  I didn’t abandon my one other child so I could lock myself in a bathroom with the autistic two and cure them.  My kiddos do not go to college and maybe someday they’ll even read or count the correct number of forks at the dinner table.  They struggle, sometimes a lot.  It’s unlikely they will drive a car or live independently.

Yet they smile from the soul, and their joy doubles or quadruples my own.   Most of all they have each other, something that J. thrives on.  Right before the above photo was taken as they strolled across the Burnside Bridge on a civil war battlefield as the sun gently faded, J. (on the right) lovingly took W’s elbow and guided him from one side to the other.   How fitting, because the two of them have done that for me.   They helped me walk from a land of rather self-centeredness of Yuppiedom, to a life where I am humbled daily – I have to ask for help, a lot – and I am forced to shed perfectionism and accept with gratitude the small victories that happen each day.  With our typically developing oldest kiddo, she made it all so easy. With W. and J. there’s much to work and yet much to treasure too.

It’s easy to find resources lately for younger kids with autism, and I’m grateful that many friends and fellow parents have made early diagnosis a reality.  But the fight to integrate our kids into the mainstream of happy, productive living is a fresh one, and not nearly begun.   No offense to wonderful events, but it’s not about autism friendly performances.  It’s about making an autism friendly workplace and neighborhood – not just for the pretty little ones or the higher functioning individuals, but for us all.

Join me on our journeys toward adulthood, and post comments with your own.   Being parent to an autistic child is not a life sentence, and the path from the teen years and toward adulthood – my own personal focus at present – is well trodden by others.   Together we show each other the way.

Happy trails wherever you are today, and here’s to making each step as joyous as the first – because it is, the first step on the journey to the newness your child and you will discover today.

One step at a time, they say.  My twins W. and J. heartily agree – and if there’s a lesson for other parents and providers in a simple worn-out tennis shoe, it’s that life is a progression of steps toward a goal.  If we keep taking them, we get there – even with autism.

W. kept his tennis shoes and socks on for over 2 hours yesterday on a combined walk and errand run.   I’m celebrating because in this two steps forward, one step back disorder of profound autism – or one step forward/two steps back on certain days – we are making progress.

At age 20 autism is mighty different than at age 6.  Unfortunately service providers and educational systems skew so heavily toward early services that we tend to forget adults of all kind, including those with autism, have sensory needs.  A visiting DDS social worker on Friday suggested I’m not getting W’s school to deliver on W’s sensory aversions.   I’m still thinking about that.  Really after years of school systems applying their cookie cutter service grid regardless of the I in Individualized Education Plan, maybe I have low expectations.

Yet progress of any kind happens because of persistence, and some magical element of leveraging the individuals innate assets to cooperate.   What was the deciding factor yesterday in keeping the shoes on?  Temperature, since it was in the 50’s and W’s feet were cold after wearing Crocs with no socks all day?   Tolerance, since our most wonderful skills trainer has successfully gotten W. to wear said shoes/socks at least 5 times before on neighborhood walks? Mood, as in W. was compliant that day? Overriding sensory regulation, in whatever earlier activities W had undertaken?  None of the above?

So while work awaits, I’m newly energized at multiple goals for W and J. too -as well as myself.  Any goal is possible when you work at it.  Here’s to a day to you all, and me too, of many steps toward even seemingly implacable goals.

I’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!

School 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.

A former neighbor and now Facebook friend moved me to tears with a simple comment on a recent hiking post of mine the other day.  “I have climbed sooooo many mountains, vicariously, thanks to you people,” she wrote.   This from a person with so many health issues that she’s wheelchair bound and with the use of just a few fingers on one hand.  Yet she’s among the most avid Facebook posters in my little circle and never fails to email with holiday and birthday greetings.

It’s all about perspective, isn’t it?  The term “living vicariously” is often pejorative.   I remember my own mother castigating some of her peers who rather forced decisions on their kids in an effort to ‘live vicariously’ through their choices rather than free them.  On a more positive note I’ve told many friends how I delight in ‘living vicariously’ through my daughter’s travels and now career exploits – remembering my own early career accomplishments and travels.   Certainly the travels for us is now greatly restricted by autism-driven difficulties in finding care for the boys when/if we’d go on a long trip.   We’ve chosen not to take them abroad (not counting Canada) as they’re certainly unable to appreciate new/different cultures, the time-zone changes further complicates destinations and the cost/benefit ratio to them and us just doesn’t work out.

I write this from our usual end of summer vacation taken largely to fill time while the boys have 2 weeks off from summer session until the fall school year.  We’ve done our usual combo vacation with something for everyone – hiking for us all, motel pools and ocean for J., plenty of restaurants and treats for W., and a few wineries and historic sights for the parents.  I always feel guilty relaxing even while on vacation.  This trip I’ve struggled to let go of lingering dumb work items I wanted to finish before I left but didn’t.  I’ve worked hard to put down the usual feeling that  in relaxing for 3 1/2 minutes, I failed at the cause of curing autism and haven’t helped the boys advance their always limited skills.  My mind wanders to the coulda, woulda, shoulda litany of things I could do differently and better, that would lead me to be a better Autism Parent.

But wait – there’s another perspective.  I just turned around to see W.’s beaming face as he lazes around in bed at 9 am without an agenda, knowing there’s a sizable breakfast around the corner, and time with his favorite pastimes and a car trip to somewhere new in store.  J. is soundly sleeping still but I suspect that suits him quite happily too.   The hubby is regaling me with fun facts about some sights we’re about to see and inlet  geography of these fascinating fjord-like Maine ports and coves that are like Norman Rockwell paintings live.  Last night’s drives to see and plot the semi-fictional second home purchase (“Look!  we should buy that mansion by the sea after I write the great American novel!”) is always fun.

Yesterday’s vistas during this spectacular hike will fuel me, but so it this letting go of agendas, schedules and demands, most importantly my own self-demands to be the Perfect Autism Parent.  Rest and relaxation is so very important for those of us special parents, but for me, sometimes hard to achieve.  It’s about letting go of living vicariously through the multitude of posts from Facebook autism-friends on how they live their lives, how they are spending their vacations, or how they are doing X therapy or Y group in order to fix their kiddo.  Truly I love these people and their stuff on a good day is very helpful to know, but tends to make me stray into the self-flagellation department – particularly during my 3 1/2 minutes of relaxation.  I take great heart in my guys’ marching on up that oceanside cliff walk yesterday, and smiling and stimming with joy that says they took a break for a minute too.

So that you, dear M., my neighbor and friend. It’s all about perspective, isn’t it?