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.   But...as 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 was...fun.  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.

A Letter to My Autistic Daughter to be Opened at Graduation

I feel a little guilty sharing this here, and I think the only reason I'm doing it is because it was always my plan to write something of this nature on the blog.  It's only now that it's a school assignment that I'm actually getting to it.


A little background.  Before I blogged, and after Emma was born, I bought a little leather-bound journal that I intended to write to Emma.  The idea at the time was that this was going to be something that I wrote to her that she was not allowed to open and read until she had kids of her own.  I wanted something she could look at with her own kids and see how we struggled and floundered and how we didn't always have the answers.  And how we loved her.  And I wanted it to be my voice in her ear when perhaps she might prefer not having my actual voice in her ear, but still needed help or guidance.  It was also this morbid idea of a voice from the grave.  What if I wasn't around when she had kids?  Here were my words, preserved.  

From the second journal...

I struggled with it.  I had a difficult time determining my voice.  I wrote in it pretty regularly, but I struggled writing to Emma adult-to-adult the way I had intended; the way I wanted it to read.  I shifted back and forth but mostly it came across (in my opinion) inconsistent, amateurish, and uncomfortable.  I was writing to a two year old one day and the next I was writing to the 30 year old to be, it vacillated between stuffy and formal, and profanely casual.  I filled the journal and didn't buy a new one.  And then Lily was born and weeks turned into months and then years until I once more bought a journal and began filling it in, this time for both kids.  There was a lot of guilt about having a journal for Emma but not for Lily.  And so the journals became for "both kids". 

It was essentially a blog, but instead of typing and hitting enter, I was smearing ink across fingers and pages and giving myself hand cramps.  So I started the blog.  When it started (here's the first post), it was with the idea that autism and Lily probably belonged in a separate space all their own.  I was 'marketing it' to autism parents.  I had started writing unread blog posts prior to that about Emma's adventures, but it was only after I immersed myself in the reading others' posts and writing my own specific to autism that I was really "all-in" blog-wise. I felt guilty about having a "whole family" blog and a Lily-specific blog, and eventually merged the two into one.  Okay. 

That is the story of how this blog came to be.  That is what this blog arguably (now) is, a series of journal posts to my children that they can someday read and hopefully get a little comfort/support from, while also making me a SHIT ton of money.  Meh...at least they'll have the posts.

We received an assignment to put together a time capsule for Lily.  I love those things.  I don't know what all is included, but what I'm focused on here is:  "A letter to Lily for her to read at graduation."

Without further adieu...
-----------------------------

Dear Lily,

Hi, Peach. When you read this eleven years will have gone by.  The first thing I want to tell you is the last thing I say to you every night before you go to bed.  I'm proud of you.  I love you.  I believe in you.  Past.  Present.  Future.

It seems to me that by writing this I'm attempting to predict the future.  Nobody can do that.  The parents who think they can are misguided.  Whether they think their child will be a doctor or football star, an engineer or a pilot, a stay-at-home parent, live in assisted-care or stay at home all his or her life...no parent knows the future regardless of their child's neurology.  The hoops and hurdles God places in the paths of all His children are always different and are never lept through or over nor stumbled across the same way by any two of us.  The branching results of all our decisions, good and bad both, lead us each down a path that is unique to our own experience.  And utterly unpredictable.

You work so hard.  You jump through all the hoops and over all the hurdles we as parents place in front of you.  Sometimes there are so many.  Sometimes we don't even understand why we think you need to jump through them.  We do it because we think they'll help.  We do it because we're told they're necessary.  We do it because "research indicates that...".  We don't know.  We don't have the answers.  We just want what's best for you, and we pray the decisions we make will help lead you there.

But I want you to know this...

You, 8 year old Lily, child of the present, are such a happy child, so full of life and energy and joy.  Watching you spin and jump and play, a broad grin splitting your face, an infectious and mischievous giggle bubbling up and over as we tickle you or play with you we can't help but be happy too.  Every day when I bundle you up and walk you out to the school bus we hold hands and I tell you to stand in the driveway to be safe from cars, and you get so frustrated with me and I worry that you're going to have a meltdown, or throw your glasses or refuse to get on the bus, but when the bus gets there, you tell me, "I happy, daddy," and climb aboard.  On graduation day, this past Lily is the future I want for you in adulthood, the present you now inhabit in childhood:  Happy Lily. 

If you never become a doctor, if you never graduate from college and get a job, if you never go to college, if you never leave our home, if you never learn to read this letter, if you always need help to eat...but are happy?  Then I will be happy.  This future is certain and fixed and utterly predictable.  This future is unchangeable because it holds within itself all the possible divergences from my "expectations" that don't matter when compared to your happiness.

I may not be able to predict what you will one day become.  I may not be able to forecast how far you will go, or how much you will change from the sweet little peach you are right now, but after working so hard and jumping through so many hoops, after all the drills and therapy and frustration, when graduation day comes for you, if you say nothing more than, "I happy, daddy," well then I think we'll consider those 11 years time well spent.

I promise I will always have that end goal in sight.  I promise not to lose sight of your happiness while chasing after misguided expectations of a future that cannot be predicted.  I'm not saying you won't still be frustrated with me.  I'm not saying you won't still have to work hard to jump through my hoops (the ones that make sense and the ones that don't).  I'm just saying that those branched paths of your life within my control that don't ultimately lead to your happiness will be pruned if they can be.

Every night after prayers as we lie in bed I tell you I love you, I'm proud of you, and I believe in you.  No matter what the future holds, I know how hard you will have worked to make it there.  And I love you, I'm proud of you, and I believe in you.

On your graduation day if I say to you, "Are you happy, Lily?" and you respond "I happy, daddy" then I'm happy too.  And if you can't tell me that, then I will do everything in my power to fix that.

I love you Lily.
I'm proud of you.
I believe in you.
Do what makes you happy.

Love for NT Parents

One of each...

This post isn't probably going to be spectacularly popular in the autism parenting community.  I want to give a little love to the parents of neurotypical kids, pejoratively..."normies".  And to do that, I want to first talk about being a parent of my own NT daughter for a minute.  Specifically, I want to talk about Emma, my 11 year-old NT daughter, and Lily's big sister.

Sometimes Emma struggles.  When she doesn't make the talent show.  When a friend says something cruel.  When she worries about a test.  When she can't land a side aerial.  When she wishes she was in the honors program.  When she wishes she wasn't one of the smallest kids in class.  When she wishes she didn't have such a hard time trying new foods.  When she can't decide between softball (because she thinks it will break her father's heart if she quits) or dance (because that's what she really prefers).

What I want autism parents to understand is...it doesn't hurt my heart any less than it does when Lily struggles.  When her horizontal pencil strokes are weak.  When she has an accident at school.  When she doesn't eat.  When she can't participate in something her typically developing peers are doing.

They're both my kids.  I don't ever think, God it hurts my heart that Emma is sad about not making the talent show, but at least she's not autistic! 

Observing Facebook, Twitter, and the blogging community I see daily (on my lunch break, of course) where autism parents rail about NT parents' problems.  My close friends in the autism community do it.  Every day.  I see it in the form of:

• A rant about an NT parent friend/acquaintance bragging about son/daughter's honor roll/soccer team/dance performance, etc.
• A rant about an NT parent friend/acquaintance complaining about son/daughter's struggles with (insert sport/school activity/etc).
• A rant about how offended we were that NT parent friend/acquaintance asked stupid/insensitive (but well-meaning) question about our children.
• A rant about how hurt we were that NT parent friend/acquaintance won't bother to even educate him/herself by asking us questions about our children.

NT parents are damned if they do and damned if they don't in the autism parenting community.  If they ask questions out of ignorance they're excoriated for their insensitivity.  If they fail to ask questions then they're derided for not caring.  If they brag about their kids, they make us feel bad.  If they complain about their kids they lack perspective.

And what I think every time I read one of those posts is, if I didn't have an autistic child I would be doing each and every one of these things.  I am "educated" about autism solely by virtue of having an autistic child.  I wouldn't know the first fucking thing about autism if it wasn't for Lily.  I would ask the questions..."does she make eye contact?"  I would say, "Is she really good at math?"  I might argue, "But she seems happy and smiles!"  I would complain that Emma didn't start at pitcher.  I would brag that her team won the championship.  I would shy away from asking questions that I feared would come across as insensitive.

I get it.  I do.  There is a definite difference between wondering whether your child will make honor roll or wondering whether your child will ever learn to read.  That's perspective.  But NT parents love their kids no less than we love ours.  I know this because I'm the parent of one of each.  And I will be damned if I'm going to censor someone from bragging about how awesome their kid is doing, or how heart breaking it is to see him/her struggle, even if that struggle seems trivial to me, or the success unapproachable relative to my autistic child.  They love their kids like we love our kids.  Their lives should not be framed around my daughter's neurology.

I think what bothers me the most is that sometimes the same people arguing that NT parents need to become educated about autism are the same people who get butt-hurt when given an opportunity to provide that education.

I can either answer the question, "Is she really good at math?" with "No, autism doesn't mean she's a fucking human computer, asshole," or, "Actually, they say about 70% of kids on the spectrum struggle with cognitive/intellectual disabilities.  We're not sure where she falls, but she struggles to communicate on our terms so it's hard to be sure what's going on in her brain."  Those sorts of things are difficult to come up with off the cuff when they seem insensitive and the easiest response is just to lash out instead.  And I'm not saying my life or Lily's should become someone else's teaching moment.  I'm just saying, the same perspective that we supposedly gain by virtue of having an autistic child, we somehow selectively forget when given the opportunity to apply it to our NT parent friends. 

I try to talk very candidly to friends about Lily's successes and struggles.  I don't know if it makes them uncomfortable that I'm excited about something like "asked me a question appropriately."  Maybe they're on more comfortable footing when I share Emma's successes and struggles because they get the frame of reference.  Regardless, I also try to celebrate their kids' successes with them...and lament their struggles.  They love their kids no less. 

I'll probably realize I'm wrong at some point, but I feel like I've reached a really good place with Lily.  I feel like I accept her completely.  But before I got where I am with Lily today I wondered how to accept autism.  Before I wondered how to accept autism I wondered how best to spread awareness.  Before I wondered how to spread awareness I wondered what had caused it.  Before I wondered what caused it I wondered whether I shouldn't have vaccinated.  Before I wondered about vaccines I wondered about cures.  Before I wondered about cures I didn't have an autistic child.  Each new thing I 'learned' either built upon the last, or completely razed it to the ground and rebuilt it from scratch.  I was totally adrift and I needed to understand.  Needed to because my daughter was autistic.  No other reason.

Before I had an autistic child everything I knew about autism came from "Rainman".  Everything.  Just like your friends.  You don't like the questions they ask?  Help them ask the right ones.   You can't celebrate your friends' kids victories and support them during their losses?  Then the problem isn't your friends' insensitivity or lack of perspective.  The problem just might be YOU.

What Acceptance Means to One Autistic Girl

I have an autistic Facebook friend who is doing a giveaway for the month of April on her Facebook page.  She called my attention to it.  I actually didn't even know that particular page existed.  I follow her blog, but this was unrelated.  She was giving away patterns she designs.  To enter the giveaway you had to write what "Acceptance" meant to you.

She messaged me about it, and I told her I wasn't sure I was comfortable injecting my two cents into a conversation among autistics about what "Acceptance" means.  In essence, my discomfort comes from not wanting to "butt into" the conversation.  Parents' voices often ring a bit too loudly and too self importantly in those sorts of conversations.  Who am I to say what acceptance means?  I'm accepted.  I don't have a valid frame of reference.  So I explained my reluctance.  She countered, "Why not ask Lily what it means to her instead?"

Why not?  Well, Lily's seven.  It's difficult to know what she knows and doesn't know.  When Emma was seven I don't think she could have told me what "acceptance" meant to her.  Why not though?  I preach, "presume competence"...why not practice it a little?

That night I was giving Lily a bath.  Lily was impatient to get in the tub, but it wasn't full yet.  I was sitting in front of her on the lip of the tub helping her get her clothes off.  

"Lily," I started, holding the cuffs of her pants as she stepped out of them, "what does acceptance mean to you?"

"Um," she replied unhelpfully.

"What does acceptance mean to you, Lily?" I tried again.

"Um," she repeated.

I asked her a couple more times, pulling her shirt over her head, stretching her socks out by their toes until they released from her feet to spring into my hand.  I tossed the clothing into the hallway, and held her hand while she stepped gingerly into the steaming tub.

I let the water run a bit more and she hunkered down to get closer to the warm suds, staring at her reflection in the polished chrome fixtures.

"What does acceptance mean to you, Lily?"

I used cupfuls of the warm water to wet her hair, damming her forehead unsuccessfully against the splashing water with my free hand to keep it from running into her eyes.

"Independence," she sputtered.

I froze, the cup in mid dip.

"Independence?" I asked, not quite sure I'd heard her right.

"Independence," she repeated.

I cocked my head quizzically.  This was my answer.  At face value I could certainly tell my friend that my daughter had said that acceptance meant independence to her.  It was a wise answer, maybe a better one than the others I'd seen.  I could extrapolate from it.  It meant not needing help with things.  It meant being able to do things for herself without others interfering or getting in the way, or forcing her to do therapy to tailor her way to their way.  It was a good answer, even if I was still hesitant to accept it at face value (how's that for irony?).

Did Lily understand acceptance?  Christ, I'm not sure even I completely get it most of the time.  I was very intrigued.

"Lily, what does independence mean?"

As I lathered her hair with shampoo, she began scripting a song she listens to on one of her favorite DVD's.  It's Emma's dance recital DVD from a year ago.  She calls it "Purple Recital" because the DVD cover has purple lettering and a purple graphic.  She loves listening to the music and watching the girls dance.  One of the songs the girls (it is not Emma's group) dance to is the song she began to script,

"I've got no strings so I have fun,
I'm not tied up to anyone."

It's "I've Got No Strings" from Pinocchio.  That was her response to me when I asked her what independence meant.  There is no rote memorization that goes with that association.  There is no..."oh she only associates it with independence because Pinocchio talks about it in the movie before they sing that song"...because she doesn't know the song from Pinocchio, having never watched it; she only knows it from this dance recital video.   

I am reminded poignantly of the amount of "hand-over-hand" this kid gets during the course of any given day, and of how frustrating it must be to have to move your hands when someone else is pulling your strings.

There's no cynic's knife I can use to pare away the concept that Lily knows what independence means...maybe even what acceptance means.

SO interesting.  Presume competence.  

I'm usually pretty careful with how I phrase my titles...but this post isn't one parent's interpretation of what his autistic daughter thinks...this is straight from the girl herself.