About 90 minutes too early to say this, but I think we survived Snowmageddon 2013 here in New England.   I say that because it’s not over until the bus driver beep-beeps in the driveway to take the lovely young gentlemen to school.   Not sure how it works for other special needs kids, but W. and J. have trouble with unstructured time.   Unfortunately lately each of their recreational interests have waned a bit, making snow days – especially the work days – difficult.

Here’s a guilty admission:  school snow days are really tough for me because the work expectations don’t end, even if the outside world cuts me a little slack because like me, everyone else is working from home and putting their finger in the dike managing the kids.  So I take breaks to make sure the kids are OK but unfortunately I’m not there doing crafts and attending to their interests every moment.  This makes me feel bad but really, I’m not sure how everyone else does it all either.  We pop in videos, make sure the hygiene and breakfast are addressed, and otherwise encourage appropriate play but tolerate more stimming than usual, just because we have to get thru the day somehow.  The hubby is often minding the fort on these days as he’s far better at working with autism-noise in the background.  Lately the boys are a cacophony of noises – J. tends to make nonfunctional vocalizations – someone once called them dolphin sounds – while W. sings Xmas songs year round, and has an amazingly pertinent playlist.  (“Let is Snow” was a favorite all weekend.  See here, people who say the profoundly affected are clueless to their world.) I have a hard time writing and thinking with two channels of autism noise, so tend to sit in my upstairs office perch cranking the heater up and hoping I don’t hear screams or hubby bellowing.

Friday was like this, Saturday was largely spent popping videos into the basement VCR and checking in on the boys every 10 min while we spent 6 hours – literally – shoveling and snowblowing 27 inches from our 75-foot long driveway.  And that didn’t count 1 of the 2 garages where the 4+ foot drift just couldn’t get done with the weary snowblower – nor the back sidewalk where a 5-foot high drift just wasn’t in the cards.

But then, there was the reward.   There’s always a reward, really.  The trails were restored to their fluffy snowiness thanks to 12-16 inches in the White Mountains of NH where we like to hike.   We picked a bit of an aggressive route, I was sadly hauling arse due to feeling slightly under the weather and probably more out of shape than I’d like to admit, but – we made it.  The summit was as grand as imagined, and actually not as hard as I’d thought.  After a nice break I had more fuel in the tank so to speak to have gone longer and harder at the snowshoe.  Which is great news, since I set a goal for a longer/greater elevation gain peak across the street, hopefully to be done in the next month.

Apologies for boring all 3 of you readers with endless hiking blather, but I take such joy in days like Sunday.   The Presidential Range arced across the sky and of the 8 four-thousand foot or above peaks directly in front of us, we’d done 6 of them already – with the 2 biggest (and hardest) still left beckoning us, invitingly, gently telling us they know we can do it – and they will be so proud to welcome us atop.  Each mountain has a memory, or several.   No time to recite them all here on a day where I’m supposed to be working, but suffice it to say they are truly my mountains – our mountains.  When the sun shines bright and the crisp winter skies silhouette us against nature’s achievements, I know I can do autism.
And run a business, be good at my craft, be a decent mom, and love enough to change my sons for the better, and the rest of the world along with it all.

Of course there was Monday, when for whatever stupid nonsensical reason school was cancelled, caregivers weren’t to be found to help with 1 notable exception (who wins a prize in my heart for showing up), and we were finger in the dike again. But- we made it.  As W. and J. awake to shut off their alarm clock soon, I’ll hug them from the depths of my soul, and know we are ready for the trails ahead today – that the storm tested us, proved us more than worthy – and that our unique journey carries us ever upward to the sky.

As Monday takes its own crazy pace I’m still mentally wrapping up the weekend and its lessons for W. and J.   Every day presents a lesson, if only we look for it.  Sunday’s lesson was about being flexible, and true to the mission.  Unfortunately we didn’t go snowshoeing largely with icy conditions with recent thaws/freeze-ups that dictate extreme caution on even super easy trails – and partly for other reasons.   There are always many reasons for counter-intuitive choices for families of special needs kids, really, as we juggle here with the Chores and Fun List (that’s the heading I write on my weekend Action Items List.  I write Fun as a little inside joke to myself, just like I wear my favorite SuperMom sweatshirt on the days I’m most stressed out).

But more importantly this weekend I really wanted to fulfill my last blog post, of giving each boy a moment for their Happy Place.   On Saturday despite my being a little sick of the motif we did dinner at Chitpotle, for W.   Beaming smiles ensued, and melted any doubts on my part that it was the right thing to do.

On Sunday we made time both for a wintry walk around a local lake AND more importantly for swimming pool time for J.   He’s often not as demonstrative with his feelings, so I wasn’t sure if he found his Happy Place in the pool or in the bag of chips at our little Super Bowl “party” here.  The swim also didn’t engender a good night’s sleep either, as J. and W.  were up well past midnight.   But I sat poolside watching the boys and hearing the strains of an old Carly Simon song “Loving You’s The Right Thing To Do.” Sounds corny, but I felt a rightness in the priority ranking of the weekend.   I didn’t get to the trails, but I got to my sons, and they got to me.

Trouble is, there’s still me lurking at the bottom of the pile of wants and needs.   While I’m happy W. and J. are happy, I need that soulful recharge too.   I get my fillup from more than just hiking trails.  Nowadays since I work from home, receive therapies for the boys at home, and am perpetually cleaning up/yeaning to be spiffing up the home, I’m frankly sick of the home.  The wilds are my spiritual release.  Daughter’s recent ski trip in the Alps makes me yearn all the more for newness and limitless boundaries not hemmed in by the need to care for others.

Truly I’m not bummed out today,  yet I’m mindful that especially with yoga class being cancelled,  my emotional bank account needs replenishing.  I’m 60% and not 100%.  Here’s a statement and a promise to the other special parents who read this – and you are special, even if you are parenting neurotypicals – that by the time of my next post, I will travel to some new venue by heart and by car – and it too, will be the self help that is the right thing to do.

As the boys lie sleeping, I’m in my Saturday morning reverie like yeast gently urging the dough upward.  Today it’s fueled by a hour or so of bread baking and watching the weather as I dream of hiking trails tomorrow.   Yet the chats I had last night with some neighbors at a ladies night of wine and memories carry me across the house to my sons’ slumbering.

A dear neighbor with kids of similar ages to mine talked about her sharing my problem of waking at night and not being able to get back to sleep.   I mentioned that when it happens I whip out my iPhone and surf web sites that interest me.   She asked me if when that happens I could go to my Happy Place – that dream locale where life is soothing and you are lulled into bliss by the simple thought of it.

That Happy Place –  what a great word for it.  I’m blessed to have many – my kitchen mixing new creations, my husband’s arms, a mountain top, the feeling of helping clients discover their corporate voice, and this blog.  I’ll put up with sleep deprivation and way too rushed a daily agenda for just 10 minutes of what I truly love – because it recharges me.   It’s my fuel for the journey, and without it, I plod instead of leap.

W. and J. have a happy place too – and that’s a blessing.  So many autistic individuals, especially the most affected, seem locked in a very UNhappy place of self-injurious or aggressive behavior, or coping strategies that reflect profound confusion at a largely overloaded sensory environment.  I think I know my sons’ happy place – certainly the look of delight from W. when we drive up to a Chipotle is precious, and J. while swimming beams me smiles that reflect I think the fact his poorly wired sensory system is finally soothed and not overloaded.

Yet look a the operative words “I think” above – as in I think I know what makes W. and J. genuinely happy, or I interpret their behavior to mean happiness.  Where is their true happy place – do I really know it, or is it an experience that’s yet to come?  How can I help them find it, and also share it with me? – so I can make more time for it, and thus enlarge their happiness and my own.

Sleep-time for the men is about to be rudely ended by the jolt of their mother telling them it’s time to take a shower and get ready for speech therapy.   But later today I hope to try some approaches on how to get W. and J. to tell me what makes them happy.   Abstract concepts like this are always hard, yet really maybe they’re simple, and looking me in the eye as clearly as their bright beaming smiles.

The saying “Two Steps Forward, One Step Back” is a lot more fun on the Forward days.   Sunday and Monday were the forward days.   Unfortunately Tuesday was a Step Back.  School changed semesters last week, and instead of having three days a week at one, known and understood job placement – J. now attends three different jobs, with very different environments and expectations.   Not only the days of the week are rearranged, as to when he attends class versus vocational settings -he’s being asked every day, all day long, to meet novel expectations.

For J., coping with stress means making nonfunctional vocalization, fidgeting in usually unacceptable ways like adjusting his “package” and gently slapping his leg almost as if the rhythm soothes him.   For some reason W. seems unaffected by the semester change, although his Tuesday wasn’t exactly a banner day either.   Stepping out in front of a car in the parking lot of a school trip to purchase items at the grocery store for cooking class doesn’t exactly impress the teachers.

To further complicate matters, tonight J. starts a special needs soccer class – totally Mom’s idea and interest, not his.  As a result the Wednesday after school and evening schedule will further change.  And, for three nights in a row, Tuesday -Wednesday – Thursday -family dinner will be at 7:30 or 8 pm, sometimes later.

And we skipped over Mom’s own minor little traumas, like my perpetual inability to set limits on my work load and work ‘friends,’ or constantly skipping over self care matters like my back strengthening exercises, and my humorous but not really need to top the Personal column of my voluminous daily To Do list by the word Hygiene (my code word for Take a Shower, Stupid) so that I actually get around to it.

The alarm just rang, so it’s time to rouse the sleeping husband and zip off to the usual Action Item litany where I stuff 10 pounds of living  into a 5-pound bag.   But as J. just shut off the alarm and started his routine, I’m chastened by the wisdom of Facebook – did I just type that? 🙂 – that after a day that’s a gigantic #FAIL, the best and ONLY thing to do is get some rest, and get back at it again.

Here’s to being back at it -and making today the first of those Two Steps Forward.

My kids – your kids – all kids grow every day, no matter how big the leap.  That includes forever kids like W. and J. whose developmental age of maybe 5 years old on a good day belies their 18-year old bodies.

Yesterday was not a special day, really.   We let the boys sleep late (Mom actually slept late, which was amazing), went to late Mass, and did neglected chores like putting away the Xmas ornaments.  We did treat the boys to their favorite “restaurant” (Chipotle, where W. inhaled a wrap before I got to my seat – truly).  And we did the usual drive-around errands of the grocery store, a few other stores and the bank where the boys basically tag along with us and practice behaving in lines and in public.  We made dinner at home, quite a fabulous one cooked by Dad, folded clothes and readied for the week.

Buried in the ordinary were milestones, and I hold them in front of me to guide me today:

-W. zipped out of church door far ahead of us, got in line and independently shook the priest’s hand, saying “Hi Father.”  Without prompting!  and without parents to guide him!

– J. painted 2 sides of his favorite craft boxes using side-to-side, “cover up all the white space” strokes and not the stimmy circles he does when he’s simply calming himself.

– W. spent between 4 pm and 8 pm playing 4 different preferred activities – his word cards, puzzles on his iPad,  puzzles and iTunes on his computer, and money in his cash register – without a disrobe and without hyper-vigilance on the part of Mom and Dad – so the parents could do other chores around the house.  OK, some of his play was stimmy, but it was so delightful not to have to run and chase him all the time to make sure he was behaving appropriately.

– J. independently awoke to the alarm clock and shut it off each day – just like we’ve been practicing for about 3 months.  He even proved he is no different than any typical teen, when he hit the snooze bar and promptly went back to bed. 🙂

Growth is about progress, not perfection – about the unending journey to better ourselves, one step at a time – however small.   W. and J. are growing, and for that my day is all sunshine today, inside and out.  Here’s hoping this Mom can do the same.

Is there any phrase for special needs parents with such immediate emotional impact as IEP meeting? Merely breathe it to “special parents” and we enter the zone of mutual knowing – that no matter how the meeting concludes, parents emerge with frustration and amazement that assembling so many highly educated people in one room inevitably leads to displays of sheer stupidity.

After 15 years of IEP meetings you’d think I’d know better.  For the first time this year I fully rejected the drafted IEP as required by a new town liaison who insisted that any word changed to the document once we left the team meeting required a fully new team meeting.  (however it was OK for the OTs and SL/Ps to reword what they drafted in the document sent to me for signature, though.  So I guess the rules apply only to we “lesser” members of the team of equals, i.e. parents).  I had our 2nd team meeting as required a few days ago, and while I did emerge with about 80% of what I wanted, the display of lack of knowledge of my son after 2 years – and commitment to trying something new that might work – was sad, puzzling and downright irritating.

“Individualized” is the first word in Individualized Education Program (IEP).  Yet the lack of interest from SL/Ps and OTs to genuinely individualize a program cuts across just about every school my sons have attended.  This school, in particular, appears to hide behind statements of “we tried and he can’t ___.”   Yet when you ask specifically what they tried, in an attempt to understand or frame a new approach, answers were vague.  I ask, “Did you help him understand the (noun) or the (action verb) by using Meyer-Johnson picture symbols?  “Oh we always have symbols in the room.” – OK, but you didn’t answer the question.  Did you present them to him, and how – or was he supposed to go them for himself ?

Here’s another one. “When we point to the (noun) on the shelf and ask him to put it away, he can’t do that.”  I ask, “So when that happens what do you do?  “We point and walk him over to show what it is.”  I ask again, “Did you use the picture symbols, or look at perhaps whether he doesn’t understand either the noun, or the verb?”   The answer came back,  “Oh we have picture symbols all of the place.”  I ask, well, how do you present them – is it in a size of visual field he can understand, is the symbol photographic or illustrative, what was happening at the time, did you try to simplify or explain the task?”  Dead silence.

Hello, professionals?  You work at a SCHOOL.   Your job is to TEACH.  Your consultative time on my child’s behalf is meant to FRAME APPROACHES.   Your direct service time is meant to PROVIDE INDIVIDUAL THERAPY, not so the same old thing you’ve done for 2 years that didn’t work,or tasks you’ve developed for other students –  then tell me “He can’t.”

And thank you also for sharing that you, too, own an iPad, with the same programs my son uses at home.  But when I pay for his outside speech therapist to show you what she’s doing my child, and you reject the suggestion, even though you crow about how you own an iPad  and are happy to try the existing screens and software you have developed for others – you are proving yourself guilty of the #1 error of your field – failing to MEET THE STUDENT WHERE THEY ARE AT.  Isn’t this the definition of “Individualized”?

I’m not sure if these professionals have noticed, but I begin each meeting by thanking them for their interest and concern in my son – and I mean that.   And I end each meeting remarking on a recent achievement.  It’s my way of saying that while my sons are profoundly autistic, they make progress, Mr./Ms. Professional – even if the pace is slow, and uniquely their own.

And you, the professional who is not really helping, you are in for the most tactful, clear, and insistent PITA (Pain In the Ass) you’ve ever met.

Ran into a lovely parent I’ve known for years yesterday as my sons were on their usual Friday purchase-pizza practice.  (their reward for volunteering at the public library).
She mentioned that her son, just days younger than my sons, has been in a residential placement since last fall.

Wow.  That’s all I can say.  I haven’t gotten done processing it.  He’s only the 2nd peer I’ve known to go residential right now – the other child unfortunately hit a troubled, violent patch with his mom where there was no other choice.  Interestingly this boy was someone I’d always considered much higher functioning than mine – more social, more engaged, with different but (I guess to me) less problematic behaviors.

It’s happening – the autism generation, that blip on the charts where there are so many kids with autism, are starting to move out of the family home and onward to their next destinations.  I have lots of feelings on the topic. Too many to process in the few remaining moments before it’s time for showers and pre-speech therapy activities to start.

When do we know when – when is best – and how do we as parents do that real letting go
that comes with fleeing the nest?

And how can we ever trust that their next nest is as loving, supporting and appropriate as
the one I so carefully build and cultivate for them?

Here’s the perfect visual metaphor for my life – a cake so brimming with goodness that it overflows, browns too fast, blackens the oven and nearly sets off the smoke alarm – yet creates sweetness that lingers.

Too many ingredients- too many stories to tell – too little time!  The above photo was from 10 days ago, before we entered yet another rapid-rise period where too much had to be done at once.  The boys started back to school, J. developed some lovely new bad behaviors we had to immediately address – entire rolls of toilet paper don’t flush well and tend to flood ceilings – and we readied the typically developing now 21-year old sister for a semester abroad.  There were the usual Saturday morning cakes to bake so J. could practice his bakery-related vocabulary words with his speech therapist (scrape, middle, edge, side, clean and dirty).   There were naked man episodes where despite our drafty old house W. persists in bolting and getting naked when he’s bored – thankfully in the bathroom or his bedroom now.  There were malfunctioning appliances just when you needed them most (washers that don’t spin, driers that don’t dry), last-minute daughter logistics to supervise – and a rerun of “Taken” to watch two nights before the trip abroad, just so we parents could further terrorize ourselves.  Finally one Monday morning we put the boys on the school bus, the daughter on the plane, and it was back to semi-normalcy – whatever that is.

That night I did the unthinkable and watched dumb TV for an hour after our real New Year began.  It’s been a week and I still need more time to decompress and digest it all.   Yet that’s hardly doable  – between starting new helpers in working with the boys, knocking heads with the school district over IEPs, juggling the usual respite worker cancellations and oh yeah, running a business on the side.  Aren’t our lives always like that, with autism.

As my 18-year olds W. and J. travel to adulthood, their mom journeys toward a New Year of greater balance and focus, where the batter suits the size of the cake pan.  Maybe.  Sort of.  Hopefully.  Seriously.  Really?

I’m a sucker for New Year’s retrospectives and goal-setting – on behalf of my autistic kids and myself. The obsessive list maker in me loves the scrawled “what did we accomplish” and “where have we yet to go” lineups in my old fashioned paper journal. Somehow the naked reality of a little word on a tally of hopes turns a dream into a stepping stone on the foot path to reality – however small.

Yet Age 22 looms ever larger ahead of W. and J. -that vaunted time when the happy school bus doesn’t beep-beep in the driveway any more in our state, and the officially adult disabled life path begins. It’s a scary thought. Just yesterday I asked a trusted babysitter about her soon to be age-22 brother and how her family felt about the impending transition. Her answer was sobering indeed.

I want 2013 to be filled with so much for W and J. Truly each one made nice gains in self care and communications realms. J’s overcoming his fear of a shower so that he now prefers one over a tub bath starts each morning with a smile for me. And W’s ability to state his needs, even by standing up at a restaurant when he wants to leave or whacking me in the head when I’m not paying attention to him – literally – is the voice of a young man saying “I’m here – look at me” – however inelegant.

But we have so vastly much more to go on the journey to adult living and working. As always with their functioning level I feel like I’m bailing out the ocean with a thimble. Or, in the more appropriate metaphor, the mountain is so far away and winter winds of naysaying teachers and state services gatekeepers so harsh, that I worry we will never summit. Instead will we forever journey, always upward yet never much beyond – always hard and never fulfilled?

There’s no perfect answer here, only New Years faith that each of us, even the profoundly autistic, has beauty within – destiny beyond – and fortitude enough to keep building that path so we are ever closer to the sky.

Adult autism comes in many shapes. I’m no artist, but as parents we all strive to paint our kids a path they can follow toward happiness and health. If I drew the life path of my neurotypical daughter, it would be one of a continuous line, moving upward and forward through successive milestones and accomplishments.

My 18-year old twin sons’ variant of autism feels like living in a world of concentric circles. This is not a depressing commentary, dear reader; far from it. Here on a full, grateful post-Thanksgiving morning, I’m counting many blessings, including that the boys lie sleeping, the daughter did not take me up on my 5 am Black Friday shopping offer, and the hotel has free coffee and Internet access enough for all our devices, electronic and metaphorical.

But I’m struck by last night’s incident at the hotel pool. J. was with Grandma while I took W. back to the room when he was tired of swimming and I felt a public disrobe coming on. (see previous posts for more on the delightful escapades of life with Captain Commando). J. had been happily swimming when 20 rowdy kids descended on the pool and took over. Being a child who largely prefers quiet, J. didn’t know what to make of it. So he walked in circles around and around the pool, over and over, until Grandma realized he was adrift and brought him back.

Autism is so like that – so framed by repetition, of behaviors that calm the autistic individual yet look odd, like ever news motor tics that thwart our best-hoped efforts at a path toward normalcy. It’s also about parents’ need to repeat the teaching of skills, and the correction of maladaptive behaviors, over and over with a sense of ad nauseum that can be wearying, and make us feel doomed to ever-draw the same circle so often that it cuts a rut into the paper, instead of soaringly upward lines.

More importantly, what we do as parents to special kids – often without realizing it – is to see and decode the shapes drawn by our kiddos’ behavior. Grandma so fittingly read the shapes of Jeff’s laps around the pool last night, as a cry out that said “What’s going on here? Swimming calms me but what do I do now when there’s no room for me and it’s too loud?”

My task – indeed, that of all parents of autistic individuals, regardless of functioning level – is to see shapes made from everyday actions, and gently stretch them upward and beyond. It’s a mini-revelation, actually. It’s made me think today about some other recent minor behaviors I’ve got to shape, like W.’s tendency to stack and sort vs. read flash cards, and J.’s motoric scribbling when it’s time to paint or color. Theses are certainly minor issues relative to disrobing in public but when viewed as a picture of a person, they point out areas we can perhaps address, or reshape.