Happy New Year, world! No time like the present to make room for new thinking and new ways. Like turning my notorious sleep deprivation of late into constructive posts.

I made time for a great yoga class last night that has me focused on opening new pages of this 365- page book I’ve been given called 2014. Funny, yesterday morning I was musing about the same thing, really, under the guise of our 48th hiking accomplishment and how it taught me about the simplicity of simply taking one step at a time toward a lofty peak.

If I but focus – repeat , step by step- and stay consistent to my goals, what new summits I could gain!

Here’s to fresh starts, as fresh as each new day.

Promised myself I’d blog today so here’s the world’s shortest post.  The hubby’s away this weekend and while that means more work, and the need to allow more time for the usual routine, it’s also allowed me to focus on the boys.

I love my kids – all of them, even with their issues.   Yeah doing both showers, keeping an eye on both simultaneously to guard against their bad behaviors takes more focus.   Yet focus is a clarifying thing.  It cuts to the chase, and lets go of all that is extraneous so what’s left has meaning.

Love.  My guys are genuinely sweet to the core, and despite W’s issues – despite J’s tendency to croon the same invented Mommy song at the top of his lungs for three hours, they are a joy.  When I ask “Who wants to help Mom trim green beans?” – they both coming running.   When I ask “who wants to open cans for Mom so we can make dinner?” – J peels off his favorite La-Z-Boy to dart to my side even when it’s his brother that I called.  When I asked “Who wants to vacuum before the car trip?” the “I do” chorus made me smile.

We’re inexplicably bonded, my guys and me.  They’re genuinely trying to do what I ask, and correspondingly I’m trying to coach them to greater capability while respecting their uniqueness.  It’s fluidity that’s great for us both.  It’s easy to want to change your autistic kiddos, and certainly their deficits promote a greater focus on “what’s wrong.”  As this week brought tremendous achievement for the typically developing sister, I also had to avoid sadness over what isn’t meant to be.  No my boys are not at college and readying for a launch into the work world.  Hell they’re not even reading although J. correctly counted the number of forks needed for dinner last night, and independently opened a can of tomatoes – uplifting me that all this daily practice really does work.

But each day, we both grow through love.  My boys, and me.

With T-minus 23 minutes to do three showers and get to church, the tubs aren’t going to get scrubbed today.  And don’t tell anyone but my own personal hygiene my get a little crimped.   But we’ll be freshly bearers of joy where ever we go today.  And that’s a gift.

So go away more often, hubby 🙂 – because the clarify on what really matters to me will carry me through gray skies, today and always.

In the peaks and valleys of life department, we summited another one – my niece’s wedding.   Although W did not wear his official “party pants” for which we did a behavioral shaping program, he did wear a sport coat AND a long sleeved dress shirt ALL NIGHT.
And while I did have to special order solid black PJ pants that he would wear, he looked – OK! (especially if you ignored the bottoms).

J. as usual was smartly handsome in sport coat, white oxford shirt and tie with matching dressy docker-style pants in a blue that brought out the sweetness of his eyes.

I stressed out so greatly over this wedding it’s not funny.  And while W.’s sensory issues with pants continue to not be what I want for him – we made it through an otherwise stressful, not-much-in-it-for-me event to everyone’s satisfaction.  Not sure either boy really enjoyed the wedding – and eating dinner at 9:30 pm after a long day waiting and wearing uncomfortable clothes probably wasn’t their thing – but we made it.

We made it!  In our own unique way – as we do each day.

As with many things in life and autism, as I blather excitedly to others about our hiking NH’s 48 Four Thousand Foot peaks accomplishment, there are those who get it and those who don’t.  I think about that today, several weeks afterwards, during a rainy weekend where I’d far rather be hiking than dusting the living room.  I think about it also as the daily struggle to gain capabilities continues, and we do the work that gets us to the peaks -the over and over again repetition that builds capability.

The “get it” camp among those who reveled in our hiking joy included the boys’ longtime therapists who have watched them gain capabilities, which is really rewarding, and some neighbors and family members.  One neighbor even baked us a cake afterwards to celebrate.

The “don’t get it” camp unfortunately at present included most of their teachers, which is a sad statement on which I could riff for a few hours. The “don’t get its” also includes a few uber-hikers that I admire among the various online groups in which I participate, which I suppose saddens me, but also gives me pause to examine my own motives as well as expectations.

As a spectrum disorder I suppose one has to know autism and its particular expression in a given individual to understand any accomplishment.   So much media airtime is expended on advocating inclusion for autistic individuals and convincing neurotypicals that jobs, gainful community roles and living settings are possible and indeed contribute to society.

Unfortunately for those of us who were given “Classic Autism” ie lower functioning individuals – in my case that means W. and J. cannot read, struggle to count and perform basic activities of daily living – it’s not so easy.   Most assuredly W. and J. belong in their world, and make it a better place.   However their capabilities are very limiting on the job or for independent living.   W. continues to do wonderfully at his shredding job at a sheltered workshop, however by definition it is not competitive employment like bagging groceries (which I wonder if he could ever do).  Most decidedly, W. needs the supports of the staff at his shredding job to remember basics like “when the red light comes on the machine is jammed so you have to stop” and such – even after at least 9 months of working intensely on such skills.

J. on the other hand has such profound sensory issues that work environment overload spawns either bouts of nonfunctional vocalization (once called “whale noises” by an S/LP we met vacationing at a hotel) or bouts of slapping himself rhythmically.  His vocationally oriented school has not yet found a job setting where Jeff functions well after about 2 years of various rotations.   At home with support I see him function beautifully while painting, and he’s also done wonderfully albeit with 1:1 support at a local bakery where he scrapes then greases about 100 cake pans each week prior to baking.   But it’s been hard to build the requisite preparation skills and independence around these roles – not impossible of course, but a lofty peak to climb on which we are still early in the ascent.

My lower-functioning guy’s challenges brings up the topic of their life path and where they’ll fit in the world after us.   Yesterday’s Boston Globe carried a story on abuses at a group home chain where 3 adults have died in the past 18 months.  Truly I couldn’t bring myself to read more than the first 4 paragraphs.

The road is long, yes.   At present I also struggle with my own limitations as full-time work demands, a profession of “can you top this” in ridiculous expectations, and the increased demands of my aging body like the need to stretch and sleep in ways I could formerly skip.  Always I feel insanely sad and “bad mother” like when I can’t accomplish all the 30 boys’ action items I put on my To Do List each day.   The rain has made this weekend about chores and organization, not hikes, which also inspires my feeling rather cheated and sad. The road is long indeed, and I am human.

But thanks to this summer I have a new mental image:

This is W., the child who couldn’t go more than 100 yards when we started hiking without a sit down protest and a promise of a reward.   The child who took insanely long to plan the next step.   The child who’d ask to go home after 10 minutes.

This is W. journeying independently home.

On my crappiest days, I know I made this happen, and it gives me intense joy.

We stumble, struggle and sometimes fall as parents of special kids, but the path to capability journeys upward always.    If you set your child’s goals low, you will achieve them.  If you look to new heights – you will go above and beyond, and may even surprise yourself.

Onward!

We did it!

My guys, the hubby and I summited all 48 of NH’s four thousand foot or above mountains.  It’s been three weeks already and I’m remiss in sharing my joy with the world here on my sorely neglected blog about the journey of parenting my most special guys.

The joy lives on, still, even across this rainy Labor Day weekend.

I rushed to share my joy and thanks with a hiking forum from which I learned immeasurably about the finer points of planning hikes.   Someone in commenting his congratulations amended a metaphor I used about hiking helping us each deal with our daily rocks and roots, to emphasize his own view:

“Each of us has a journey with rocks and roots but, occasionally, we rise above the tree line and enjoy a miles long vista.”

Mt. Carrigain for our 48th was certainly one of those.  I intend to continue my analysis of what this meant for us, and how others can apply it in other published venues.   But for now, I need to share with the world that WE DID IT -and we are all the better for it.

It was also oh-so special that the neurotypical older sister joined us, even though she hates hiking (except at the mall).  I saw glints of tears in her eyes reflecting my own as I thanked her for being part of what was intensely special to me.  I also fully informed everyone we met that it was our 48th because I wanted the world to revel in our accomplishment.
It was so special to be in community, among remoteness – and to feel deeply the congratulations of other hikers, particularly that of a blind hiker of some renown locally who in some amazing coincidence, if you believe in such, had just summited ahead of us and was descending as W and I were almost there.  When I told him that he was an inspiration, he said “I have a great team.”  To which I instantly replied “So do I,” and choked up.   Dear those on the “get it” list – we were there on that day because of you – truly.

Sometimes the road is long, and seemingly impossible.   One step at a time, we succeed! Always.

Aah, summer.   Vacations, languorous days spent poolside, and nights of warm happiness.  Or, if you’re a glass half empty type, unstructured downtime, stimming and the unsettledness borne of change.

Today I’m seeing the glass half full even though yesterday included a visit to the meds doctor for J. to address the new tendency to scratch himself until he blisters and bleeds when he’s not supervised.  This unwelcome behavior blew up in our faces about six weeks ago, and although it abated from its initial 3-4x/weekly frequency, it’s still happening once a week, which is once too many.  HATE, HATE, HATE meds – that’s my sentiment.  They make me feel like a bad parent.  But I certainly don’t want J. to hurt himself.

As I segue into IEP planning for the selfsame kiddo, and think about how to maximize J’s and W’s growth toward adulthood this summer after a very helpful side chat with the doctor yesterday about expectations of staff in adult supported living settings – I’m both hopeful and sad.  Hopeful, because I’ve seen slow but steady progress with both boys toward ADLs and general adjustedness (my spell checker says that is not a word but I like it) across settings.   Sad, because they are not at all near where they can shower, brush teeth, make a snack and do laundry independently – hallmarks that the doctor said are important for better quality adult living settings.

So, as I sneak this moment away from a busy work day and the looming exterminator visit for which I have to declutter the floors of just about every room here, I’m using the above photo as my talisman for the day.   Summertime with autism presents cooling breezes and peace, for the autistic and for their parents.   It did for us last week, and my goal for today is to enable it for my guys, even for a moment – and just as importantly, for myself.

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!

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.

Today’s the one year anniversary of this blog – a Mother’s Day gift from the hubby, one of his finest.  While more than a little embarrassing that haven’t posted for 3 months – I left life, births and deaths, travel and toil, distract me from this “non-productive”  activity, ie. one I can’t bill to clients, and one that doesn’t clean or grow my kids- I’m here today, in bliss despite the rainy weather.  I’m here! and life is good – even better than a year ago.

My boys are a year older, now age 19, and I’m proud to say they are most definitely more capable than last Mother’s Day, and still happy.  Yes there are issues.   W.  still disrobes, though far less frequently, and more than before is dressing himself in accordance with the rules that we don’t walk in the hall or out of the bathroom without pants.  J.’s vocals still bedevil us and unfortunately his stimmy-ness sometimes spills over into scratching or rubbing himself til he bleeds or blisters.  Neither boy reads or counts reliably, and our pace continues to be measured in baby steps.

Yet a glance at the horizon -when I forget the date, and remember what tasks were like just a few months ago -says PROGRESS in bold letters.

W’s spelling of his 9-letter last name (that could win a Scrabble game with all its unusual letters) at the bank last Friday was stronger than ever.  Thank you V. our most wonderful skills trainer for helping him!

J’s ability to double-tie his shoes nearly independently – excepting for Mom tightening the initial knot – means I can tell him to go get shoes, and it’s done.

Both boys take delight in self-determination.  W. is routinely choosing clothes, shoes and school lunch vs. homemade sandwich.   He even hits me upside the head – literally – like last night when he wants to get my attention for a ‘treat.’   J. chooses his own clothes and many other points in his day.

J. listens even better  – no more lost young man who’d marched all the way to Wildcat C while we were still ascending Wildcat A.  Yet, anyway.

Two weeks ago I heard a remarkable interview of the Vermont woman who received a full face transplant, and the daughter of the donor who made the choice to donate her mother’s face to a stranger.  They spoke of mutually deciding to have a relationship, not knowing where it would take them, but in the spirit of journeys and openness to where they lead us, the recipient simply said “And here we go.”

So that is my mantra today, as I try to stuff 10 pounds of flour into a 5-pound Mother’s Day, as I don’t know if we will find post-age 22 employment that’s meaningful and honoring, that I don’t know if the global business climate will allow me sustained employment to cover the many gaps in therapies and support.   As I try hard to take care of myself along with others.   As I work to live my dreams, while loving and honoring my obligations.

Here we go, readers – here we go!

Great post over at AutismWeb yesterday on “The 17 Things ‘The Princess Bride’ Taught Me About Autism.”  Thank you Winnie for reposting it, and big thanks to Snagglebox, source of the original post.   We could all use a dose of this today.   Personally I’m replaying #16, i.e. even when I’m dog tired, with my perpetual sleep issues lately – and even when there’s two steps forward and one step back, as in W’s disrobing behavior and J.’s agitation, I’m still alive and keeping up the fight.  And most importantly, #17.   To the castle – !

1.  Affection doesn’t have to mean saying I love you. Reading a story to someone who’s sick in bed, saying “as you wish” or playing rhyming games that annoy your boss… there are many more ways to show love than just those three little words.

2.  Optimism can get you through the fire swamp. Just because you haven’t tackled a problem before doesn’t mean there’s no solution, even for POUS’s (Problems of Unusual Size).

3.  Having a target will help you stay focused. You don’t have the energy or resources to tackle every challenge that’s in front of you. Find your six-fingered man – prioritize your goals, work out which of those you can tackle and then pursue them with everything you’ve got.

4.  You rush a miracle man, you get rotten miracles. Be patient. Change and growth takes time, and there are no corners to be cut here. Every kid is working to their own schedule and developing at their own rate.

See the rest of the original Snagglebox post here:  http://www.snagglebox.com/2013/02/17-things-princess-bride-taught-me.html

And, last but not least, a final word we all need to remember:

17.  It’s one hell of a story. Sure there’ll be laughs, adventure, pain and tears… but at the heart of it all, it’s about love.

Have fun storming the castle!