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Wednesday, January 29, 2014

Challenger

I signed Lily up for adapted baseball (Challenger League) in the Spring.  Emma's not playing softball this year, and rather than use that extra time to get yard work done, we elected to fill it with additional chauffeuring for Lily. 

I've talked before about mapping out firsts and pushing boundaries and expanding experience.  Much of the time it's Leslie who does that legwork, and I'm dragged behind in her wake, not wholly resistant, but perhaps more skeptical.  Lily started dance classes at the tail end of last year and loves it, and so why not go all in?  Leslie talked to a friend whose son is in it, and I drove down to sign Lily up.

Here's how it works (as I understand it):

It's almost all ages.  I saw a kid on the sign up sheet who was 19.  The organizer splits them into two groups.  There's a starter group and a more advanced group.  Participants are paired with a buddy (if needed) who provides help and hand-over-hand as necessary.  There are no practices.  They just hit the ground running...or wheeling as the case may be.  I told them to put Lily in the starter group because I'm not sure what she'll even do with a bat and she rarely catches the largest of playground balls, so a tee-ball is going to just bounce off her beautiful noggin.  He said we could switch if the other group was a better fit.

I thought one of the cool things was when the organizer asked me whether there was a certain type of person Lily should be paired with.  And I thought about all the people who work with Lily and who have success with her.  Cheerful and positive and upbeat.  And when those people work with Lily...Lily mirrors some of that back at them.  I chewed on it for a minute before saying, "High energy, loud, positive, but not a pushover."  He thanked me because he said some of the kids don't do well with all the stimulation. 

This made me think about Lily in the mornings.  When I wake Lily up for school she's often in a bit of a daze.  She doesn't usually answer my questions.  "How did you sleep?" (crickets)  "Ready to get up?" (silence)

Once I put her on the potty and she has a chance to process, wake up, and catch up she starts responding a bit more.  But what I was thinking about was that a long time ago (or so it seems) Lily used to fight that routine.  She didn't want to sit on the potty, and we had to sit with her and convince her to try.  And she could get a little frustrated with us, and during those times the absolute best way to snap her out of it was...to giggle.  If you just laughed and smiled at her for no reason, you'd see the corners of her mouth turn up and she'd giggle back at you.  I found that in the mornings everyday that I woke her (we take turns), I'd sit with her and put my head against hers and smile and laugh.  And every time (or nearly so) she'd slowly grin and laugh with me, and she started her day in a good mood.

This morning when I thought about this in terms of a blog post I was thinking this was some sort of Lily-specific autism thing.  Like I had some insight to share with people about what makes Lily tick that I'd gleaned.  But the more I thought about it, the more I thought..."well, this is stupid.  Isn't everyone a little happier with happier people?"

I thought how much it bums me out when I talk to people who are themselves bummed out.  You want them to be excited to hear from you.  You want them to be full of energy and fun to talk to, but they're not, and it's disappointing, and there's nothing you can really do about it and it sucks away at your own mood, and on the other side of it, when you're a little down and you're talking to a chipper cheerful person, it's hard to stay in that gloom (unless they're so chipper you want to punch them...you know who you are).

Anyway, it may be common sense, but it just wasn't anything I'd thought about.  Lily is happier with happy people.  Lily is more energetic with more energetic people.  Lily stays more on task with people who don't allow her to stray. 

So baseball will come sometime in April (he said whenever it starts staying warm and bright) and they'll put a bat in her ungentle hands, and then (as I posted on Facebook) it'll be Thunderdome, with Lily swinging the bat without regard for her teammates and I just pray they understand the ramifications because I really don't want the Challenger League to earn its title by exploding minutes after takeoff.
Lily paired with Blaster.  I feel like this is a good pairing.  He's positive, upbeat, takes no shit...welcome to Thunderdome, bitches!

Tuesday, January 21, 2014

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.

Wednesday, January 15, 2014

Black Olives

My wife stood in our walk-in closet and said, "Does this look okay?"  She was wearing a black sweater with olive pants.

I instantly panic anytime she asks me that.  It's not like I have PTSD about it or anything, she's never shrilled at me for giving an insensitive answer, but it occurs to me that there is an insensitive answer floating in the air, and I want desperately to avoid snatching it from the ether and serving it up to her.  So I looked at her and said, "Yeah."  I wasn't sure about the pants though, and said so.  It wasn't that the pants looked bad.  Or that the sweater looked bad.  It was that I wasn't sure the olive pants "went" with the black sweater.  I told her so.

She moved to the bathroom and observed herself.  She pulled the sweater down self consciously, then pulled it down again as it rose up.  I wondered if she thought it was too short.

"Is it too short, do you think?  You keep pulling it down."

"Maybe," she mused.  "I wonder if it would look better with different pants."

"Maybe let me get my first pair of pants before you start in on pair number two."

She graciously stepped aside as I grabbed a hanger with pants, and moved back into the bedroom to change into them.

When I looked up she was wearing black pants.  My brow furrowed involuntarily but she already had second thoughts.  "Maybe the gray ones?"

I shrugged and said, "Maybe let me get my shirt before you start in on pair number three." She grabbed pair number three as I left the walk-in closet and finished dressing.  I made the bed and went downstairs to start breakfast.  It was her turn to wake Lily and bring her downstairs.

She was already at the table eating before she said, "You didn't notice."

I hadn't, whatever it was, "Notice what?"

"I changed my pants and my sweater."  Pair four and sweater two...such is the life of a woman, I suppose.

I stirred my greek yogurt.  I like greek yogurt.  It's actually really good for you, and can be tasty, but when you first open it, it separates a little.  There's a milky liquid atop it with globs of yogurt and it looks completely unappetizing.  Once stirred to homogeneity, however, it's like ice cream.  I stirred too vigorously and some slopped over the edge of the container.  I didn't really notice until i saw it on the place mat.  I mopped this up with a napkin before noticing it on my shirt.

"You're going to have to change your shirt, Daddy," said Emma.

"I am if I can't get this out," I responded, daubing at it.

I finished my breakfast and began to stand.  There on my crotch was the rest of the yogurt.  Apparently it was quite a load.  And...well if we're being honest...looked like one.  I laughed.  "Lovely"

My wife and daughter laughed.  "How did you not know?"  I had no good answer for this. 

"Okay, well I guess that answers that.  I'm going upstairs to change."

I figured I might as well take the shirt off even though it was the least of my worries.  I found a pair of pants and grabbed a sweater off the shelf.  I put these on before taking my "soiled" clothes to the basement to rinse them in water, spray "Shout" on them, and dump them in the wash basin for the next laundry run.

I drove Emma to the bus stop after saying goodbye to Lily and Leslie.  When the bus picked Emma up I watched them drive out of sight.

It was only then that I noticed I was wearing a black sweater with olive pants.

Friday, January 3, 2014

The Nutcracker (Autism-Friendly Style)

Image from:  http://www.pbt.org/news/pittsburgh-ballet-theatre-premiere-first-ever-autism-friendly-performance-nutcracker

I wanted to make sure I mentioned our experience at The Nutcracker.  The Pittsburgh Ballet Theatre (PBT) approached my friends at ABOARD (Autism Connection of PA) about putting together an autism-friendly production of the Nutcracker a YEAR ago.  This is the first ever...in the country.  When last we spoke of the arts, I was writing about the Lion King. The Landlord (Pittsburgh Cultural Trust) and therefore staffing/venue/support are the same, but now PBT took the lead.

We purchased our tickets for the Nutcracker months in advance, and prepped Lily by DVR'ing an A&E production of the Nutcracker.  She enjoyed watching it.  It's pretty much right in her wheelhouse...music, dancing...should be a no-brainer.

We were, as a family, more prepared for this production.  We knew, for example, that we wanted to get there a little earlier than we had to the Lion King.  We knew where we'd park.  We knew to get a booster seat.  All these things served to make our "pre-event" stress less than it was for The Lion King.

What we did wrong was...  No, that's not fair.  What I did wrong, was I changed our seats.  The front row was taken.  I had snoozed and therefore I had loozed.  And so I thought, wouldn't it be cool to see this from the balcony?  Yeah.  Yeah, it would.  And the very first row of the balcony was still available.  Bang.  Done.  Tickets purchased.

It's difficult to know that the balcony was Lily's issue, but she was upset and scared to go sit down in her seat overlooking the stage.  I made several attempts, each time retreating to the bathroom or quiet room as Lily would say, "I have to go to the bathroom" in an effort to escape the seat (I think).  After three bathroom trips, Leslie texted an aide from Lily's school who was also in attendance.  She took Lily to see one of her classmates (also seated in the balcony section) and diverted her to the point where she calmed down before returning with her daughter to their seats prior to the show. 
the view from up here...
from the front of the balcony...attempting to calm her

With Lily calmer, we retreated from the very front row to a safer distance from the edge, where Lily, if not happily, at least not miserably watched the entire show.  At least she was after she requested and received M&M's from the concession stand, which I handed her, and she flung across the empty row of seats.


"this castle hath a pleasant seat..."

calmer...clapping...

Again I really felt like staff and talent were well-prepared for their audience.  I have never been approached by more smiles and offers to help in any venue as I was during my repeated sorties to the bathroom and back with an upset Lily in tow.  The ushers were so laid back..."sit anywhere"..."don't worry about getting up and down"...etc.  The stress I was feeling at calming Lily did not snowball as a result of getting additional stress from people targeting me with judgmental stares or scornful glances or, god forbid, "SHHHHH".

My only concern was what I saw when I looked around.  Empty seats.  How can you convince a venue/organization/etc to back your efforts if they're not paying off?

Back to Lion King.  When I posted about our adventures, I said there was only one thing that I could think of that the venue could have done better/differently.  "Sell fewer tickets so there aren't as many people".  At the time I didn't really feel like it was a practical suggestion.  It was just the only one I could think of.  Fewer people...less noise...less overwhelming press of bodies in the entrance and the bathrooms and the aisles...less stress.

So it might seem as if my concern above regarding the vacant seats is me talking out of both sides of my mouth (face?  How does that expression go again?).  It's not.  I just don't know whether the lack of butts in seats had to do with lack of interest...or a concerted effort on the part of the Pittsburgh Ballet Theatre to make the event less crowded for its autistic audience members.

Because I'll say this...if that's what happened?  Holy shit!  Lily's trepidation had nothing to do with what the venue did to prepare for Lily's arrival.  They did what they could.  It's never going to be perfect, but they did absolutely everything they could to make it as close to perfect as possible.  Fidgets distributed, social stories, lights dimmed instead of extinguished, lower volume, educated staff, performance modified to make it less scary/startling and...perhaps...fewer tickets sold?  Magnificent.  Keep.  Up.  The.  Good.  Work.

If the empty seats were because people couldn't be troubled around the holidays to cart their families to the event, then I guess I get it, but it's a shame.  Efforts like this one deserve to be rewarded.  This is textbook sticker chart material, people.  If you display preferred behavior, you get a sticker.  They did their part...and we didn't give them a sticker for it. 
a thing I did that amused me

I would love to think that both performances were considered successes and that more were planned for the future, because really, attending these my family was the source of much envy around the nation in locations that do nothing of the sort for their city's autistic population.  I need this to work and catch on, and drive other places to do similar things that will similarly work and catch on.  This stuff is awareness and acceptance brought into actual practical application!  This is what everyone in this community WANTS.

It's what I want anyway.  I get in trouble when I speak to generally about what everyone wants.

ALERT ALERT!!!  This just in!

Okay, I'm not rewriting all of that, but I did talk to my sources within ABOARD.  Okay, just so you know, when I wrote that, I LEGIT giggled like a school girl.  Heh...sources.

Anyway!!  They told me that PBT was thrilled with the turnout.  And parents were thrilled with the "chill" atmosphere that having fewer bodies in the venue created.  I can confirm as a parent to being both chill and thrilled (once Lily got her goddamned M&M's).  So I'm excited that PBT was less concerned about selling out the venue and more concerned about making the experience enjoyable/memorable/endurable for this group of patrons.

Also, they recognized that the Nutcracker, though a holiday tradition for many, is not a Disney juggernaut, so they weren't competing for that sort of turnout, and they also were aware that ballet is considered by some to be "girly" and with more boys on the spectrum than girls...it might not get the same sort of play.  And finally they recognized that it was the holiday, and that they might be competing for people's time.

So...YAY!

And apparently it's not just Pittsburgh that appreciates PBT's efforts to appeal to a more inclusive audience...PBT Education Director Receives Emerging Leader Award for Commitment to Arts Accessibility