Monthly Archives: February 2013

17 Things “The Princess Bride” Taught Me About Autism

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:

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!

Snowmageddon 2013

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.

Helping You’s The Right Thing to Do

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.


That Happy Place

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.