Monthly Archives: April 2014

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The word of the day today according to Dictionary.com is anagnorisis.   In case you didn’t know it either, it means “the critical moment of recognition or discovery, especially preceding ‘peripeteia’ in Greek tragedies – the latter meaning an abrupt reversal of circumstances.   Call it aha moment, or the hit me with a plank of wood on the head moment.

Autism is so full of “anagnorsis,” or perhaps we should just call it serendipity.  Yesterday W. was the picture of the word at a local food pantry where he used to work with a former school.  The word “fabulous” also applied.   W. was a machine stocking industrial shelving with pallets full of canned goods donated by Wal-Mart and the local Hannaford supermarket (a shout out for their generosity.)  Perhaps it was the familiar environment, or the known tasks, or the repetitive, motoric nature that fit for him.   But he took delight in his work.  And I took delight in him, as did the staff who treated him with respect and gratitude – as is deserved for us all but not necessarily always found.

The sudden reversal of circumstances occurred about 4 hours later, when W. suddenly decided his high-top basketball shoes were not the ticket and pitch-tossed them for over an hour as we attempted to go have our usual 2-mile walk at the gym.   He needed exercise, his brother J. needed exercise, I needed exercise, but instead W. sat in the car pitching shoes and socks into other seats insisting he was not going to wear them.   We spent 45 minutes (no joke) on this task and I never got out of the car.   About the only plus to the event was the incredible practice he got in double-tying his shoes – dramatically improved proficiency in pulling those long loops for a great double-tie.   The shoe experience does follow on Sunday’s church dress shoe pitch-toss and refusal to wear those either.  Hmmm, says the observant mother.

So was it a win, or a loss of a day – and what was my agagnorisis – ? Here at my desktop perch after a reasonable night’s sleep and a supportive chat with the hubby – it was that W. is a complex ball of sensory experiences that I have not yet understood.   The other aha, or really a reminder, was that W. has a will to state his needs emphatically, however flawed the language as shoe toss vs words.    Certainly I’m delighted to shoe-shop and allow his favorite Croc clogs where appropriate.

A herd of deer crossed my backyard as they foraged in this early springtime where the buds on the trees are barely emerging and they are hungry.   Deer have needs, autistic young men have needs, and their mothers certainly have needs.   This one needs to know her guys are always on a path to greater capability.   So thanks, Dictionary.com, for giving me a new name for those days that otherwise might be called hair-pulling – and for a fork in the road that will bring us to a few new destinations, and an always deepening dialogue with our autistic loved ones if we are but receptive.

The joyful patch

Patch cropped I thinkBrilliant 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.

Twenty Best Things about my 20-Year Olds with Autism

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.