The sun is shining, it’s 3:30 pm and while I’m dog tired and about jump on yet another work fire drill, there such a wonder here that I have to take a break and write about it.  A new Community Supported Agriculture (CSA) arrived here yesterday courtesy of a vacationing friend for whom we’re house-sit – and such abundance you’ve never seen.  I mean like 8 shopping bags full of goodness – vegetables like kohlrabi that my kids have never seen, along with massive leafy greens I’m embarrassed that I can’t identify (collard greens?), fresh sage, onions and garlic, purple-tipped scallions, about a dozen cucumbers and zucchini, plump tomatoes, fresh apricots, peaches, blueberries, cantaloupe, and more.  Bountiful gifts indeed, and I can’t wait to prepare them up lovingly then tell my friend all I made of her gift.

So too an abundance of helpers have just arrived here today.  Call them my Community Supported Autism team.   My skills trainer, a long-time respite helper and even my daughter assisted, so at 2:45 pm when the bus beep-beeped I need only go greet it – or not – then check in on the boys, see what their home school notebooks said about their day, note any relevant goals are challenges on which we’re working lately – and head back to my life for a breath then another dive into my job.

Massachusetts has many flaws, but the way it’s supporting me to enable the boys’ safety and to give me some semblance (ha!) of sanity is frankly a model for other states to  follow.   Those of us who receive state funding don’t usually self-identify for fear if people knew we got aid of some kind, somehow it would get taken away.   Certainly I’m the same.   But although some right-wing nut will likely use me as an example of tax and spend waste etc.,
there are days when I hardly know what I’d do without 1:1 support so when W is streaking naked through the back yard, or gnawing on raw steak from the freezer, J. isn’t simultaneously taking off on his bike and ending up a mile away in some stranger’s house (yes it’s been done before.)  While I fear what post-age 22 life will bring them for living circumstances, and how J. will survive without his beloved backyard swimming pool, for today – I have my CSA.  My helpers are encouraging my guys’ behavior as I myself shape them when I’m with them – toward greater capability and social appropriateness.

Could I survive without the funds? Maybe.  Probably.  But then when the boys get hit by a car or I go mental and end up foisting my sons and their issues on the Commonwealth as a ward of the state – it would likely cost more than this “train them so they don’t go residential before their time” approach.

And on days like today when the sun shines, and J. can independently get his own swimsuit from the outdoor rack, put it on and head to the pool – OR when W. can vacuum the floor better than the college-graduate residents – I think of the words “abundant blessings.”

For today, such abundance is more than enough.

It’s the small stuff that matters in the end – particularly with autism, where progress is just a progression of small stuff, done time and again with mind-numbing repetition until mastery is achieved.   It was a busy weekend as clouds made for sub-optimal views.  No hikes and instead plenty of chores I’d long neglected.   But within that there was nice progress.

– W’s ability to get my attention and ask for what he needs is so strong lately.   While we had some shirt and shorts protests particularly when his favorites endured a big spill at the dinner table, we worked through them.

– J is increasingly independent in the morning readiness routine, getting shoes, wallet in pocket and then marching on out to the bus with only minor hesitation at the step where he has to push the automatic garage door opener.

– Both boys had superb speech therapy sessions on Saturday.  In fact J started out so agitated that I thought we were going to have trouble – that 50 minute walk around the neighborhood, followed by time in his 4-layer spandex swing, did wonders.

– Both boys tolerated more than their share of retail store visits as Mom and Dad hunted for deals and returned some broken purchases. What did we ever do without those foam beads they so love lately in the car as we ride around?

– Happily for everyone, I got time for things I needed to do – work, some of it, but also sleep, church, household organization, blogging, and chats with the soon to be workaday world post-college daughter.   Perhaps the biggest small victory herein is that I asked for what I needed, instead of just sucking it up and pretending I could be Superwoman.

Reentry to the work week always brings a yearning for the fun and yes, the chores I actually would like to get done.  But here and now, I see we each are making gains toward the people we want to be – including me.   Now that’s a victory!

The buzz about an ABC News report last week while I was busy living the super-busy, parent of multiple autistic kiddo life is still floating around the Internet, and begs for a remark – or ten.  http://abcnews.go.com/GMA/video/research-suggests-parents-move-children-off-autism-24786501 The headline  summarizes that “new” research appears to be science confirming it’s possible for autism to be “cured,” or at least for individuals to make such gains that upon retesting and rediaognosis, that the hallmark social, communicative and sensory dysfunction aren’t present – and therefore, individuals “move off” the spectrum.

What to think here? My W and J belong to the low-functioning camp.  Speed-read down to the bottom of the transcript link where the interviewed physician cautions against over-interpreting the research to say those parents like me of lower-functioning kiddos need not use the research to suggest that they either did not work hard enough, or perhaps even did not apply the right therapies.  The physician, I believe appropriately, used the report to point to the need for additional research so that science could point us toward a deeper understanding of the spectrum itself, and interventions that do work for certain subgroups.

This is such an emotionally charged domain, at least for me.  My autism-related Facebook friends shared some chatter basically supporting the call for applying science to autism’s treatments, and not surprisingly often asserting their own mini-success stories about how their kids have triumphed over Whatever.

Full disclosure:  those who know me know I often trip up over the Blame Game implicit in well-intentioned but undeniable I Cured Autism parental sharing.   I routinely explain W and J’s progress to well intentioned friends and family with Sentence 1 explaining the latest and Sentence 2 beginning “I haven’t cured autism yet, but…..”   For me, I’ll go to my grave thinking that despite everyone (really) who knows me commending me for working harder than most,  my W and J still speak in several word phrases, struggle to count,  self-stim as much as I’ll let them and can’t think in the abstract or in any way outside basic functioning.  I did ABA, Floor Time, sensory integration therapy, auditory integration therapy, B vitamins, broccoli extract pills, a brief gluten free/casein free diet, and not a small number of meds trials.   We’ve most assuredly made progress, but I measure ours in thimbles.  And I’m still proud and grateful for it, and for how it has made me a better person in the process.

Yet there is simply not enough recognition of our lower functioning autism world – these individuals’ needs but also their superpowers and capabilities that make them suitable for the world of work, for the world at large, and also go greatly to be admired.  Clearly our autistic superhero musicians, artists and others deserve the spotlight and accolades, and this discussion is in no way suggesting we diminish them at all.   But so too, do we deserve to celebrate my W. for spray and wipe a table at the public library – or my J. for fully independently  getting himself cereal after school.

On my darkest days I take heart in letters from the boys physicians and SPED director saying I was a great parent, one of the finest.  Praise for heartfelt, hard-won accomplishments always makes the journey seem more tolerable.   However I suspect I’m not alone in this rather mixed feeling when high-functioning autistic individuals get all the spotlight.  I also suspect other low-functioning individuals’ parents could benefit from a little support like this, too.

Success comes in special packages of all shapes and sizes.   It’s time we celebrate more than the pretty-looking examples of “cures” – and appreciate growth however it presents itself – on the path to always greater capability.

The title of a book I’m reading, and whose author I know and admire, is resonating with me across many levels as the sun shines and I’ve just rejiggered today’s plans in hopefully what will turn out to be an exciting vector.

“It’s Not About the Hike” chronicles two ordinary not-20 something women as they hike NH’s Four Thousand Foot peaks, the travails they manage to conquer on each, and the broader ones that the journey fuels them to enjoy.  Obviously this is turf near and near to my heart as you, all four of you reading his blog, know well.   I love the inspirational quotes atop each chapter which the Facebook page reiterates as a daily reminder to keep a perspective across life’s vast vistas.

My progress thru the book is probably the world’s slowest given I fall asleep about 2 instants after my head hits the pillow lately (often before, while sitting, glasses on and usually crunching something under me that wasn’t supposed to be there.)  But the story is a dictum for rich, balanced living – something that I personally have to remind myself often – and that I suspect other parents of special kids must do, as well.

Last week was the culmination of two major work projects capped by a whirlwind 48-hour business trip out and back from East Coast to West Coast.  During this time W.  had one of his shirt disrobe-filled, power struggle weeks both at school and at home where he was difficult and defiant with everyone.  My mommy self always blames myself for my sons’ bad weeks.  If only I hadn’t _____.  If only I was the one who put him on the bus, not the spouse.  Maybe if I hadn’t fallen asleep at night and we did puzzles instead of let him do iPad, he would have been more organized the next day.   Was it because we didn’t get central air conditioning and the temperature here varies when it’s hot?   etc. etc. etc.

Our autistic kids’ tough times are tiring in a physical sense, of course, but it’s the emotional trek involved in addressing them that is its own formidable peak to climb.   I constantly reexamine the most minute aspects of what I do for things I could do differently, which on a bad day can lead me into a spiral of self-recrimination.  It’s no fun beating up yourself, and certainly it doesn’t help the kiddo either.

But then all of a sudden, there’s a stunning vista where you didn’t expect it – and the rays bathe the mountain top, and you know it will be OK – somehow.  Given the week as it was I was not looking forward to the hubby being away this weekend on his annual guy’s weekend.   So I planned to pretty much keep to the usual semi-structured weekend routine of Friday library volunteering, Saturday morning speech therapy, and Sunday participation at a church event with the help of some friends.  When in doubt, in our house, structure and then if all else fails go on a car trip.

Amazingly the boys were quite manageable, and its Sunday at 9 am while I write this.   They were so good I found myself rejiggering Saturday’s schedule to throw in a fast jaunt to the ocean – agreed upon by group vote but really balm for my weary soul.    They actually put themselves to bed when I fell sound asleep on the sofa after returning – OK they did not dress in PJs or brush their teeth but who cares.

So we’re off on a journey now, for a last-minute planned hike.  I cancelled the help and he helpers and am taking a deep breath that I can manage the boys effectively on this day.   Doing solo hikes with the boys is advanced territory for me, as I have to negotiate the bathrooming situation to avoid mens-room only facilities, and more importantly make sure the group stays together so we don’t lose anyone up the mountain.   I’ve done enough household chores so that I don’t feel like I’m totally blowing off the weekend so I can justify this to myself.  (does any other mother do this to herself?) And of course I have to pack, drive and manage the readiness of shaving, toothbrushing, shoes on, backpacks loaded etc.  (missing my spouses help and grateful for it now).

But that hardly matters a whit today.  It’s not about the hike – this one, or probably any of them.   It’s about growing, giving yourself something you love in a word of must-do’s and everyone else’s demands and priorities.   It’s about shared joy.   It’s about entering what Shakespeare calls the Green World and letting go of daily cares so as to find a better, fresher way.   It’s about putting one foot in front of the other, with sometimes mind-numbing repetition, until suddenly there is accomplishment – there is new skill – and there is hope.

J. made himself a cereal breakfast yesterday, all except for a reminder that cereal tastes better with milk, which he then promptly got.  He even cleaned up after himself and put the milk away.  Later he swam in the backyard pool while I watched 100 feet away from he back porch, totally appropriately and answering when I called, for an hour.   Both W. and J. used the men’s room solo and appropriately at BJs later on, and waited nicely 2x sitting at a table at a restaurant while I moved about and used the restroom.

We are making progress.   There are breathtaking vistas in life that will be ours, and mine. We are journeying toward some stunning summit, and we will make it there!

Commencement exercises are filled with lofty speeches on future paths and one person changing the world, etc.   I reveled in a weekend-long college graduation for the other exceptional child in the family – the neurotypical one – and its memories still make me smile.  As I struggle to stop posting proud parent Facebook items, three days out from the event – or to keep focused on work when all I want to do is look at that gorgeous picture of the lovely graduate beside her beaming parents – I think of the other graduations with autism.

Statistics of old, at least when I was newly diagnosed, suggest that 75% of autistic individuals are intellectually disabled.   Surely more recent diagnoses are changing that figure, at least with all the high-functioning individuals I meet in our various groups and therapy waiting rooms.   Yet my W. and J. are the more classic type, who at age 20 cannot read, struggle to count, and have mental blocks on seemingly simple items they’ve practiced for over a decade such as which utensil is a fork vs. a knife in the kitchen drawer.

The future holds a graduation for us, too – with or without a diploma, or reading, or multiplication table mastery.   It’s called age 22, when the school bus doesn’t come, and transitions move to adult programs and adult staffing.   J. is progressing nicely, or at least it feels that way.  His self-injurious behavior appears to be greatly diminished or (I hate to type this or it may go away) extinguished.   His ability to function in novel tasks, such as yesterday’s school play dress rehearsal, are improving.   He’s an employee at a bakery where he greases cake pans with a paintbrush for 2 hours each week.   As I explore community based adult day programs for individuals on the autism spectrum, it feels like there will be a home for J.

For W., however, the path is less clear.   His sensory issues have flared lately as has a probably developmentally appropriate self-will whose assertion seems to involve power struggles over wearing shoes and shirt.   Fortunately the shirt stayed on most of the time during graduation weekend, but it was none to pleasant for Mom and Dad to have to accompany him to the bathroom at restaurants while making about 5 stops across a public restaurant to tell him to put his shoes on or there’s no bathroom, or no finishing your meal.    And, of course, to do so at least 5 times each meal since the bathroom is a lovely escape from whatever, as our meals grew cold and the rest of the family got to enjoy wine and conversation.

I haven’t figured out W’s needs.   Certainly I can beat myself up for, say, inconsistency with many of the at home ABA style programs that we deploy here to meet a need, and then fade as the problem appears to diminish.  Or, I can lock horns right in there with the power struggle, deploying my Mommy Reprimand Voice which works situationally most of the time but can’t be cloned by the respite workers and helpers – and avoids the core issue driving the behavior.

Much as I hate to admit it, W.’s behavior of late is his own graduation into a more adult selfhood and expression of his needs.  Emphatically, the expression is way flawed and socially inappropriate.   Yet W. has something driving the emergence of a different and changed self.   Yes it’s no fun to endure the behavior and it always asserts itself when I’m busy, stressed or tired.   Today is a half day and I awoke before the crack of dawn to attack the myriad work tasks before me – not made any easier by arriving home to dust and disorganization post-trip away that is beyond my tolerance level and necessitating some level of clean up for me to feel orderly in my life.   I’m still not at the work point yet but I needed this moment to pull back the lens and gather perspective at W’s graduation into this latest phase.

There is a lesson in W’s behavior, and my choice – I believe it’s the path, really – is to follow where he’s leading me, listen to suggestions from experts, and hold his hand as we journey together to where he needs to go toward that better place.   No it’s not the traditional cap and gown.   But W. is growing and changing, and while I’m not writing a tuition check or offering advice on course selection, my role is likely way more important in his process-ing down a path of his own choosing toward greater capability and achievement.

Last night I watched “Blue Jasmine,” with the stunning performance by Cate Blanchett of a woman falling apart.  Hard to avoid the subject of parenting an autistic child without acknowledging the many times, sometimes daily, that we feel the same.

Yet here on an unexpectedly sunny morning – made that way of course because I cancelled a group hike with other parents of autistic kiddos because of forecast thunderstorms 🙂 – I just had to touch this keyboard with the knowledge that we all fall apart – but then we keep on going.    The hubby and I spent 20 min as we shared morning coffee today discussing how to fit 10 lbs of chores into a 5-lb bag.  Typically I structure my life with the “first work, then play” prioritization founded on my overly Catholic upbringing.  But lately I’m realizing the importance of blending that which sustains us, with that which get us by.

Certainly last week had its falling-apart moments as W’s sensory issues flared up to become the kind of rather laughable but serious issues that those of us parenting someone with special needs could know.  Power struggles with your special kid are no fun, especially as they are age 20 and you can’t pick them up in a tantrum and plop them down.  Or, in my case, make them wear clothes or shoes.

I got out of my pickle, and so do all of you, dear readers.   I know that because we’re all here together, progressing with our lives to whatever imperfect yet essentially flawless manner.  So as I watched Cate Blanchett babble to herself on park benches and street corners in the movie last night, I realized I’m more ahead of the game than I acknowledge.
Further, my challenges are infinitely more bearable when do follow my heart to trails I know lead me to sustenance, strength, and hope.

Here’s my list of the five ways that parents of autistic kids I know – including the one I know best, me – stay strong.

Five Ways that Parents of Autistic Kids Stay Strong

1) Passions.   I have many, but so do we all.   When I start Saturday baking bread, or Sunday writing instead of cleaning the house or (gasp) going to church, I fuel myself for the journey beyond.   By hook or by crook today, my/our feet are touching a trail even if it’s the one in the park 20 minutes away.  Age (and a lot of it!) has taught me what I love the most.   When I touch these things, I am steeled.   I am recharge.  I am whole.

2) Mission.   Most of us special parents consider raising our child to greater capability to be our life’s work.   When life sucks, as it does a lot, we remember that it’s important to set limits for your child, so the learn them, and make them their own.  Our family rule with W. is that the only rooms in the house where you can sit around without pants and a shirt are your bedroom and the bathroom.  Sure I could budge but when he lives elsewhere someday,  he will have missed these formative experiences to intuit that if you want to go to BJ’s you gotta wear a shirt and shoes.

I also happen to think my workaday work job is my mission, too.   Like everyone my work has the 80/20 factor, as in 80% of the work is important and 20 is a waste of time, yet my own self image demands require that I deliver 120%, or at least try to do so.  Yet on those days when you win a big one, and I realize I’ve helped some little company have an outsized perception, it’s all worth while.

More importantly we all have a mission to make the world a better place, hopefully by our coming and not by our going (as the saying goes).  When I can lift my head above the day to day, I’m seeing myself take small but important steps for me to leave an impact on the autism community, and beyond.   It makes me get up the morning in a new way, not just to change my kids, or my clients, but truly to change the world.

3) Order.   Action item lists are my specialty, to obsession, and my personal journal is filled with Pro/Con lists.  But for me, I need structure to frame the many moving parts and pieces especially as autism forces so many skill-buildings in a scaffold of personal skills that are rather random.   Every once in a while it’s also important to clean house, literally and figuratively.   Routines that sap energy, family members to which your kind ear makes no difference, and expenditures of money but more importantly time aren’t yielding what you want – they have to tidied up, too.

4) Self-care.  I still struggle to put myself on my own personal priority list, and yes I’m writing this as Jeff has been pacing in my office for the past 10 minutes making his porpoise noises instead of words and telling me he’s ready for the next structured activity I promised.  And yes, I feel guilty. But I need this moment; and far more than that, really.  I know myself well enough to know I also need healthy food, creativity be it with bread, paint or words, physical activity, sleep (way more than I get) and time with girlfriends.   I have an annual charity walk that I do with a friend in two weeks, and it’s like a day-long binge with someone I love talking heart to heart, shoe to shoe.   I can’t wait.

5) Love.   It frees our kids from their unfortunate autistic limitations – it transforms communities – it reshapes a flawed and hurting world.   And sometimes it happens just by letting go.  I have to remember that as I hold tight in struggles.   Day 1’s version of W’s shoe protest where we spent 15 min with him kicking off shoes at least 15x so we could barely walk 2 steps finally ended when I – surprise! let go.   By ignoring W and the behavior for a few minutes he got sick of the lack of attention and put shoes on enough to walk out the door.   Ditto with leaving yesterday after another horrific morning-long stint of shirt disrobes where the speech therapist had to leave 10 minutes after she came due to the No-Shirt-No-Speech rule enforcement.  I thought about cancelling my hair appointment so I could make W. get that shirt on, but I didn’t, and was glad.  By the time I returned,  W was calmly sitting with Dad watching the hockey playoff game, and J was happily rocking away in his chair.  The world had righted itself amazingly without my direct machination, but more importantly W. knew I loved him, then and now – J. knew he could get what he needed – and we all went on together in the work of life, as one.

So here it is, a full hour later than I planned with a 15-minute-only blog session, where the day’s #1 top priority remains undone, and looming clouds are indicating the weather guy was right.  But it’s already so bright.

Brilliant sunshine usually makes me joyous.   Today’s unexpectedly gorgeous day however is making me all the more frustrated with perpetual work demands and my lack of ability to set limits on them.   The guys are off with others on this April vacation Tuesday and while that’s OK with me – I can’t do everything – I’m so longing to be their mom, to deliver them a sane mom instead of one who is always so tired – and more than anything, for joy.

I haven’t blogged since that life-renewing moment when our family received The Joyful Patch below – our patch for joining the Four Thousand Foot Club about which I’ve babbled in this blog for months.   Everyone deserves their moment, and that one was mine -when an auditorium of about 500 people gave a standing ovation to us, for joining despite autism, but really because of it.

Much to do, and so ill-focused here – but for now, I just had to touch The Joyful Patch once again – to remember that of all our journeys through autism and with it – we reached a goal that at least I for one treasured – and it has forever changed us and the world.

Autism Awareness Month is upon us and as much as I’m delighted that the subject is receiving airtime, the posts I’m seeing are implicitly negative.   Sure it’s hard, and remember I have double the venting rights a la the twin factor.

But we’re getting it wrong, people.  There is double the joy, too.   Funny, when I woke for my usual Saturday bread baking therapy (cheaper than a shrink) to the words “You’ll Find Joy in Every Bag of Flour We Make.”  How apt.

Parents, you’ll find joy in your autistic child, too.   No matter what.  No matter how they wake you at 2 am while they’re raiding the freezer (like last night) and interrupt what precious sleep your fractured life allows.  Or how  they clog the toilet instead of remembering to  “count 3 sheets” as the reminder cue card on the wall says to do (yesterday).   Or how they fail to look for moving cars in a parking lot exactly as you’ve just shown them four times a video model (yesterday).

It’s time we open the bag of each day and expect that joy, because when you stop venting about how hard it is – you’ll see the miracle of what is unfolding in front of you, and appreciate that it has been a gift to be taken places no others have gone.
It’s also time we remember that autistic children are our children for life – and they need to be celebrated, heard, and assisted even when they are no longer cute 6-year olds whose behavior we can more readily excuse as childhood.

I penned this a few weeks back on my W and J’s 20th birthday.   It guides me even when I’m worn, and helps me see how profoundly better they have made me.

20 Best Things about my 20 year olds with Autism

1). Honesty.  The brutal type.   “Did you steal that bagel?”  “yes.”

2). Purity.  iPods bring joy.  So do paint brushes, and large slices of pizza.

3). No judgments.   My bad hair day is meaningless to you.   As is my snappy mouth, because you love me anyway, just like I love you.

4). Lack of mean spiritedness.   My kids will never bully or be unkind knowingly.

5). Easygoing nature.   That may not be the case for every autistic individual, but I am blessed that my guys inherited their dad’s disposition.

6). Enjoy the quieter path.   My guys’ favorite times are often when there’s no TV or entertainment.   They can just be.  Wow – what a concept.

7). Truly enjoy the simple things.  Rocking chairs, swimming pools, cake & candles, a good song, Mommy’s tickles.

8.) Uncomplicated.  First shower, then breakfast, then school, then home.

9). Not afraid.  While I can’t pretend to know their inner life, they don’t appear to worry when they enter a room of strangers that these pants make their arse look fat.

10). Trusting.   When they’re tired and I tell them it’s just a little while longer to do something hard, they know I mean it.

11). Present in the moment.   Truly, what a gift this is.

12). Unbowed by social pressure.

13). Sensory.   I love the feeling of my hands in bread dough, or the release of a hot shower pounding on my skin.  I also love how J. instinctively smiles  while painting, and W. has favorite blankets wrapped on his head.

14).  They try.   Unlike a typical kid there’s no pushback because I’m not in the mood.

15). Laughable.   The men’s discussion group at the annual retreat with parents of autistic kids yielded so many hilarious toilet training war stories that our relatives started asking us for this year’s update each time we returned.  (happy to share, PM me. :-))  I still regale folks who don’t know us well with the cheese sandwich sneak from a restaurant – or the dropped dozen of eggs as I was on the phone with work on the other side of the French doors and couldn’t do a thing about it.

16).  Endearing.   W’s standard greeting to me is to lean down, wrap his arms on my shoulders and kiss my forehead.  Priceless.

17). Serendipitous.   My kids always know more than you think, and when they show it,  we revel. J. stunned everyone last weekend at his bakery job when he stopped work as a colleague  put coins out on a counter for him from a purchase, put them into his wallet, then went back to work independently and perfectly on task.  We never knew he knew what “change back” meant, but I guess he did.

18).  Work hard.  If you brain didn’t know how to make your hands open a twist-tie or spread butter on your toast, and it took all your might to make it happen – you’d appreciate what every day must be like for my guys.   They work so hard to do what you and I take for granted.    In our family we joke that we have individuals who got the work gene, and those who didn’t.  My guys did.

19).  Easy to please.   School vacation days don’t need a grand agenda.   Time with a favorite pastime and a trip to the local wrap joint are delight enough.

20.) Lovable, however imperfect they are.  My sons have brought me growth that I never would have known by parenting my other kind of exceptional neurotypical kid – the kind of kid everyone brags about.  Certainly she is our golden girl, and her smarts and compassion are already making the world a better place.  But so are all our autistic children – at age 20, or 2, or 95.  So are my W. and my J.   If only within me.

Tomorrow my twin guys W. and J. will turn age 20.   Wow.   I’m not sure I’m ready for this, physically and karma-wise.  Yeah I don’t have the gifts bought or wrapped but that’s in the plans.  The bigger issue is the journey beyond and the ticking clock toward adult services and life outside the known schooling world.  As we all know.

Certainly my guys don’t know the significance of turning the page on a decade.  They barely can count beyond 12.  And their ability to accurately select 4 forks for dinner also varies.   Yesterday being Friday, I baked special cupcakes for school so I know they know it’s coming.  And we’ve been talking up our usual birthday routine of allowing them to pick the restaurant of choice for the big day.  It’s a precious ritual.  We print 3 pages of photos of about a half dozen favorite eateries, and spend days refining the choice.  Then, at the last minute, every years for the past 6 or 7 years, the fingers move swiftly to – the Chinese buffet.  Where they’ll pig out like fiends, and we’ll laugh and capture smiles rarely seen even on a favorite mountain top.

I thought I’d feel more sad than I do at these birthdays.   I actually was going to start the last paragraph saying “Sadly my guys don’t know the significance…” but stopped because deep down I don’t feel this gut-wrenching sadness.    True, I’ll go to my grave feeling like I could have done one more thing to fix them, and I can’t count the number of times I apologize to my spouse for being a bad mother when limitations of being human, needing to work, or whatever restrict me from doing 120% of everything personally for the boys.
Would I wish autism on anyone?  Of course not.    But my guys are such genuinely pure and wonderful spirits that it’s hard to feel dejected, at least for long.

Last night was a rare night out with the ladies, and although I barely let myself schedule it in my usual too-work-focused personal priorities list, it was a gift.  Wine, honest talk about funerals and divorces but about honoring what they teach, and moving on from them, made me feel loved and respected for who I am.   The even bigger gift was on the bean bag chair in the basement when I opened the door from the garage.  J., grinning ear to ear,  comfy by himself in the quiet of a sensory room, after having just helped his dad in a late-night errand run to work.    Meanwhile W. was laser-focused on his favorite computer puzzle play and although not sporting a grin, he looked like I felt when I’m writing or baking bread – immersed.

My guys have joy, even with autism.   They have brought me to such a better place, and I to them.    Now they sleep, but I’m reaching out my hand spiritually today as I have the honor of guiding them from one decade to the next.  We will share it, revel in it, and use our love from it to change the world.