Monday, June 16, 2014

Dance Mom Twice Over

This post is a long time coming...

In the infancy of our journey along the rainbow (spectrum/rainbow/rainbow spectrum...get it?) I bought Leslie a book called "Wit and Wisdom from the Parents of Special Needs Kids".  It was a collection of works by bloggers that I was following.  Leslie's not much of a reader.  Which is not to say she doesn't enjoy reading.  She just isn't capable of getting past the first few paragraphs without falling asleep.  It seemed like a great fit for her, because these were people whose blogs I was linking to her via email.  They were connections I was making in the "blogosphere".  And, at only a few pages per essay, it seemed possible she'd be able to read one or two without passing out.

She read ...some amount...of it.  Maybe she even finished it, but I'm not positive, and I only have her track record to go on.  One of her favorite essays was from Jen (who now blogs at Yellow Mustard Mom).  In the essay she talked about the dreams she'd had for her daughter, and how some of those dreams wouldn't...couldn't...come true.  One in particular was about being a dancer, and that struck Leslie.  Sometimes our expectations, things that seem reasonable to us when we first have kids, are rendered unreasonable by circumstance.

Lily had already been asked to leave a children's group (not unkindly) at the end of the term, because it just wasn't an appropriate fit for her.  The group was a music group where the kids listened to stories and sang songs and played instruments or danced and mimicked movements.  It fit into Lily's sweet spots, but not her development.  In those days I didn't really even think about asking for accommodations to make the class a better fit for her.  I recognized that she just wasn't in the same place these other kids were, and spent most of my time trying to discipline her into enjoyment of the offering.  Which is stupid, obviously.

In those days we didn't know anything at all really about autism.  We had been told by a pre-school case manager that one of the reasons Lily wasn't talking at her age level was because we weren't being consistent enough with her.  We weren't following through.  In other words, our parenting was at fault.  So we tried to be stricter and more consistent.  We tried all kinds of things back then.  We didn't know where Lily was heading.  We didn't know what she was capable of and what was beyond her.  And to some extent we still don't.  But we're a little more savvy now than we were then.

Lily's participation in a special needs dance class came because Leslie wanted it badly enough that she wouldn't let it go.  I'm not trying to suggest that anyone who doesn't get their little princess involved is a quitter, I'm just saying I personally had given up on the idea.  As far as I was concerned once someone had told us that there was no such thing in our area, that meant there wasn't, nor ever would be.  But it must have lingered in Leslie's mind the same way that essay did.  She, as she likes to say, "used her resources," in this instance a reference to a dance class in our area by a member of a Facebook support group to which she belonged.  When she finally tracked down the class offered for special needs kids I was lukewarm about sending Lily.  I can't really even explain why.  I think it was just one more thing.  Maybe our "failure" with the other class still lingered in my mind.  Maybe I worried that this was just one more thing to organize, schedule, and make happen, that I feared woul go bad.  But I did examine the idea and think to myself that if there was any program that was a perfect fit for our little whirling dervish, our lover of all things movement and music-related...then dance was it.  Maybe this would be okay.

She hated putting on the little leotard.  STILL hates putting on the little leotard.  When you put it on her she gets mad and says "No!  I no like pink dress!"  But then it's on her.  And everything is alright again.   Maybe this would be okay.
I hate pink dress.

I hate pink dress.

The first few weeks the class was sparsely attended.  I think the first week there were three or four kids and that dropped to two for a couple weeks (Lily included).  I remember thinking, "They're going to take it away from her.  She's going to like it and then it's going to be taken from her," and I hardened my heart to it, almost not wanting it to be a success just so that when it ultimately failed Leslie and Lily's hearts wouldn't be broken. the year progressed, the numbers grew.  From the beginning to the end of the year, the class swelled from two to five regulars.  Maybe this would be okay.

The class itself wasn't like her older sister Emma's dance.  There was no instruction on "first position".  There was music, and there was movement and there  They walked like elephants and  also tippy-toed.  They spun and hopped and twirled and ran and stomped.  And some of the kids struggled.  But the instructor and her assistants got it.  Worked with it.  Invited parents into the class where needed to soothe anxieties.  Initially they were reluctant to allow Lily's TSS into the class, but as the year progressed, I think the extra set of hands was more than welcomed.  This was going to be okay.

If our story ended there, I think it would be counted a success from our point of view.  I'm not sure what the other parents thought.  They toyed with the idea of including the kids on stage during the recital, having them perform their opening number.  They tried a few things, talked to the parents, but ultimately decided it would be too difficult for the kids.  And that was okay.

Except the next week it was my turn to take Lily to dance and the instructor approached me, the great communicator, and said, "We're going to include them in the recital.  They can do this."  And I took that information home to Leslie as if it was the answer to some question she'd previously asked (ignorant of the previous decision not to include them) and she then peppered me with a million questions that I hadn't thought to ask and of course had no answers to and she again lamented ever letting me communicate with anyone who ever comes into contact with or instruct Lily because I suck at being inquisitive, paying attention or remembering anything.  Holy shit, this is not okay!

They took parent suggestions for how to give the kids the best possible chance of success.  They listened and included those suggestions.  They gave the kids three trial runs.  They could always call it off if it just wasn't going to work.  Day one Lily was so petrified at rehearsal that she held her TSS with two hands so tightly they couldn't be pried off her until she was backstage again.  But it got better.  For all of them.

There were costumes.  They were, however, functional tutus that the kids could reuse in dance class in case we had to abort the mission on recital day.  They would leave the lights on.  Their music would be played at low levels.  The assistants and even BSC would be onstage with them.  They took parent's input about where to place the kids while they waited, about the music and a pre-recital announcement to explain the opening number, and about not clapping, but instead...flapping (my wife's suggestion, if i'm not mistaken).  Fuck you if you're an autism parent who doesn't tear up at the idea of an auditorium full of normies flapping their hands in appreciation of autistic and other special needs kids dancing, but there's something in my eye and I'm just writing it.  This isn't okay...this might just be great.
Waiting calmly in the quiet room backstage

Before the recital started I sat with my family and waited,  and the theater got dark and I thought, "Wait a minute, I thought the lights would be on."  The announcements came.  They announced the first special needs dance class in the area and they explained what would happen and how we should show our appreciation at the end.  And then the lights came on, the curtain parted, and there they were on stage, all five of them.

They did it.  They all did it.  The littlest one who couldn't be parted from her mother for a moment during the year's classes without tears...parted from her mother without tears and did the dance.  The girl who bolts did not bolt.  Lily required only one hand be death-gripped on her TSS.  They danced.  My hyper-vigilant super-paranoid ears detected not one snicker nor derisive snort, and when the dance ended...every hand in the auditorium raised like they were greeting their Lord and Savior himself with a Hallelujah, and fingers fluttered and only when the children were escorted from the stage as the next set of dancers hustled on did I think, belatedly, to snap a picture of it as it was ending. 
Too late to capture the whole audience in mid flap...I assure you, it happened.

I don't want to turn this into a discussion of acceptance.  I know that this little glimpse of what it can look like doesn't mean "acceptance", but I do know that it's what acceptance is supposed to look like.  Providing accommodations to kids with special needs in order to allow them to be included in a dance recital?  Communicating to the audience?  Seeing the response?  This is how it's supposed to be.  We left that recital to go back to things as they are, the great and the terrible both, but that five minute snippet was perfection.  That's how it's supposed to work, people.

Leslie got her second daughter in a pink tutu and on stage.  We've come a long way since diagnosis.  We think about things differently now than we did then.  But this is one pre-diagnosis dream that did not have to go unfulfilled due to circumstance.  This dream was accommodated, adapted, included, and accepted.  

Are we signed up for next year?  You bet your sweet, sweet ass we are.

If you live North of Pittsburgh and have a special needs child you're interested in finding a dance class for...drop me a line.  I'm only too happy to give this studio a recommendation.

Thursday, June 12, 2014

Father's Day

Father's day is coming up, so I wrote an article for Glade Run about the things I learned from my Father.  I'd love for you to give it a look-see.  Huffpo will be running it also.

Cat's In The Cradle: Six Lessons On Parenting Passed From Father to Son