Inevitability

I'm antsy.  Matrix is on in the background.  Lily is asleep.  Emma is showering.  I'm on the treadmill wondering what I should write about.  If anything.  This.  This is what I came up with.

My car sucks in the snow.  I slid around a little bit in it last week.  Every time that happens I think, "my car sucks in the snow.  I really need something better."  I have the minivan, but never drive it.  I don't want two cars.  I just want one.  But it needs room so that I can take kids to the beach or camping or whatever.  It needs AWD or 4WD or something...but I somehow also need it to be a commuter.  What's out there?

I thought maybe a smaller SUV/Crossover.  Maybe a Subaru or something, and i could always just add a Big Mac or whatever to the roof.  Still thinking about it though.  Not sure.

Tank is loading the training for the B212 helicopter into Trinity, and it occurs to me that the flimsy little keyboard shelves he's using for his multiple keyboards is probably akin to the technology I'm using to support my laptop on this treadmill.

That probably sounds like I mean to make my treadmill matrix-like, but mostly it's just a realization that the Matrix operators had shitty keyboard support.

As previously stated, writing more means that sometimes I'll write about ...less.  Just getting back in the habit.

Oh...here's something.  I find myself putting off autism-friendly things.  They seem overwhelming to me.  Sensory friendly Peter Pan is coming soon.  And I keep looking at the flyer and then putting it in the stack with the other "to be addressed later" stuff.  And I know that part of it is because this was Leslie's strength...pushing me past the inconvenience of staying at home and comfortable.  Pushing Lily's experiences.  I know that I have to pick up that flyer.

"Do you hear that, Mr. Anderson?  That is the sound of inevitability."

Tomorrow?

"My name is Neo."

Tonight I think.

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

The Lion King (Autism-Friendly-style)

This was big.

What was the big deal?  I don't know.  But it was.  It was a big deal.  You play back all the rejection in your mind...kicked out of church because your daughter is too loud in the balcony and the organist doesn't want to detract from Easter Mass, kicked out of the front of the auditorium where your daughter is watching her cousins in a talent show because the woman in front complains she's too loud and it's hurting her sons ears, told to quiet her down in a theater before the performance starts and that maybe a theater isn't the right place for her if she can't quiet down...all the little hurts that build into chronic anxiety and stress and a feeling of "she can't do that"..."she's not welcome there"..."what if people complain"...any time any new experience is contemplated.  If she "couldn't" do those things, how could she possibly attend a musical?

Musicals have protocols all their own, when to stand or clap figuring prominently among them, but chiefest of these always is remain quietly seated throughout.  And there's just no way that can happen with Lily.  Unless...unless someone put together a performance where the conventional protocols of musical theater were adapted...suspended...unless someone changed the way a musical's conventional performance was conducted.

And that is precisely what this was.  I don't know exactly how the Pittsburgh Cultural Trust got where they did with the Lion King.  I know that ABOARD worked with them, and I'd be speculating if I threw all the credit at ABOARD without knowing if other charities were involved...or if I threw all the credit at The Pittsburgh Cultural Trust for doing it not knowing how long or hard the charity(ies) had to work to make it happen. What I know is what I experienced.  What I know is what I can directly report.  If people want to know more of the details I'll ask around.  Or maybe they'll comment here.  You never know.  This post is just to talk about what The Lion King meant to me and mine and a few thousand of my closest friends...my tribe.  But I know people here and in other cities..."autism people"... were abuzz.

The bill of goods we were sold is that this was to be an "Autism-friendly showing of The Lion King musical".  I know that there was at least one sensory room.  I know that there were quiet rooms for people to retreat to if it got overwhelming.  I know that fidgets were available.  I know that the staff was bolstered by volunteers who were familiar with autism.  I know that when we bought tickets we received a social story discussing what could be expected.

The other things I saw while I was there, but I was mostly ignorant of the details because once I bought the tickets I put it out of my mind until probably a week before the performance and focused on our little family.

We'd gotten tickets right away, so our seats were good.  Extremely good.  Front row, aisle, with the grandparents sitting an aisle back.  We were as close to the stage as you can get without actually being part of the performance, not that Lily didn't try to join in.

We were ready in plenty of time for the drive downtown.  All we had to do was get the kids McDonald's and then we'd be set.  Predictably we fucked this up.  With no money, Leslie arrived at McDonald's and attempted to purchase Happy Meals with her smile.  And just as predictably McDonald's found this currency wanting (despite the smile being priceless).  We had to make another unplanned trip.

Leslie got home and found me less ready than she needed me to be and snapped.  I snapped back and we were off to the races.  Pissed off and stressed out.  It wouldn't be a family outing if it didn't start that way.

Extra trip accomplished, we left fifteen minutes later than we wanted but still arrived with 10 minutes to spare.  I pulled over to the curb in the rain and the girls piled out.  I circled the block to look for parking and found it a half block away from The Benedum (the venue).

I pulled into the parking spot, unlimbered my umbrella and crossed the street to the Benedum before  ducking inside.  Leslie texted me that they were already seated, and I had time to spare.  I found Lu (ABOARD's director) in the lobby.  She told me, unnecessarily, to calm down, and I meandered in to find our seats.  I was the last to arrive, and although I probably sat down just after the 2:00 start time, they allowed people to slowly trickle in for several more minutes before the lights were dimmed (not extinguished) and the show started.

I'm told the music was quieter...for being directly in front of the speakers, I suppose it had to have been.  The music started to play, and Lily looked a bit alarmed.  She reached out to grab hold of our arms.  She didn't want her hands to be held, just wanted to hold someone's hand.  On her terms.  She was agitated.  We made references to the stage..."see the monkey!" ..."her name is Rafiki"...

"No, don't talk!"

I worried she'd start to spiral, but then the music started to sound familiar, and the animals started to walk the aisles...and she was captivated.  Her eyes got big and she started looking all around her at the elephants and giraffes and cheetahs, at the cloth construct birds tethered to poles swirling around our heads, at the colors and the lights and the music.  We kept a steady stream of observations going, attempting to calm her and engage her.  Her movements were quick and stiff like she was scared and anxious, but looking at her face I could see she was just very stimulated by what was going on around her.

The animals gathered and voices joined to voices, agglomerating and building, and they sang the "Circle of Life" and the music and the song built in richness and volume to the crescendo and the Lion King, Mufasa held up his cub for the world's inspection and acceptance and the animals bowed and Lily sang along.  We watched her watching them and my eyes started to brim and I looked to Leslie to see the tears already streaming down her face...watching Lily watch The Lion King.  I gave Emma's hand a squeeze.  She seemed oblivious to the emotion.  I felt the cold constricting band of anger and stress loosen and then fall away from around my chest and I felt like I could breathe again.  I sighed and breathed a deep relaxing breath and then I leaned back into my seat - willing my muscles to slacken, willing my hands to unclench- to enjoy the show.


Throughout the performance the mutters and shrieks and even what sounded like prolonged boos rang out from the crowd.  It felt weird.  It felt funny.  It felt off.  But we all knew.  We all knew it was okay.  And the performers knew it was okay.  And nobody complained or hushed anyone.  Not once.  And believe me it was a full house.  A young man near us, let loose a cacophony of shrieks.  He was upset.  I'm not sure what about.  He stood and stamped and shrieked at his caregivers.  They calmed him and soothed him.  I'm sure they were conscious of others around them.  But nobody cast scornful looks.  Everybody in that venue had a stake in the autism life.  There was no judgement.  As the end of the performance neared he'd had enough.  His group quietly stood and departed and he visibly relaxed in gratitude as they left.  No one told them to wait to stand.  No one cried, "Down in front!"

If the ushers had negative opinions about this disruption to business as usual they didn't show it.  I never saw one look of scorn or judgement.  I saw only smiles.  I experienced only friendly service. 

The performance ended and thousands of grateful patrons stood to appreciate it with cheers and whistles and the performers bowed and smiled in acceptance.  A little girl wearing noise reducing headphones bolted for the stage.  Her mother scooped her up and took her back to their seat.  I smiled.  Ten seconds later she was loose and charging the stage again.  Again her mother corralled her expertly and returned her to her seat.  A third time she bolted.  This time the performers saw her and they began smiling and waving to her, blowing kisses her way as she smiled delightedly back at them, her mother simply holding her in place this time.  I laughed and found again that my eyes were brimming.

Lily stayed in her seat the entire time.  She loved the performance.  At the end of each number she immediately turned to one or both of us and said, "I want the next song."  And each time we replied, "It's coming, Lily."

We left the Benedum with a spring in our strides.  We dodged rain drops and got in our car and drove home and Leslie would sit at the table, or couch, or stand at the counter, or lie in bed for the next...I don't know...four hours maybe?  and repeat, "My heart is full," over and over and over until all she had to do was catch my eye and I'd roll mine and say, "Yeah, I know.  Your heart is full...full of love."

I hope that was everyone's experience.  When we left I tried to think of what could have been done "better".  And the things I thought were all limitations to the venue itself.  The least autistim-friendly parts of the performance were not part of the performance at all.  They were the facilities, or the ingress and egress.  That is where the waiting took place.  That is where the large, loud, stimulating crowds jostled and maneuvered.  And I told Leslie as we left, "I don't know how you could improve upon that unless you convinced the venue to sell half the seats and call 50% attendance a sell-out, then got some major corporate sponsor to underwrite the missing revenue from tickets and concessions so that it still made money."  And that's it.  That's the only issue I had.  It was ironic to me that the intermission, traditionally a time to get up and move around, relax and visit the facilities, was probably the most stressful part of the performance for most people.

We were allowed to get up and move around.  We were allowed to make all the noise we wanted.  We could leave if we needed to without complaint.  We could take her to a quiet room to calm down.  We were allowed to bring in our own food.  The music was softer.  The lights were dimmed but not extinguished.  Extra volunteers were on hand.  Performers and employees were instructed on what to expect.  Women were in the men's room with their kids, men were in the women's room with their kids.  And everyone knew why, and it worked.  It worked so well.

This was big. 

In December they're putting on an "autism-friendly" performance of the Nutcracker.  We used the Lion King to gauge whether we thought Lily would enjoy it...could handle it.  We'll be buying tickets, assuming they're still available.  She can do it.

One last post script.  I know that other organizations were witnessing this.  Seeing how it was done.  Seeing whether it could be done in their venues.  If you're reading this and thinking to yourself..."God, I wish they'd do something like that here," then consider the possibility that they just may.  Contact your local equivalent of the Pittsburgh Cultural Trust and see.  Contact your local equivalent of ABOARD and see.  Don't assume they're not.


Pittsburgh Cultural Trust on Facebook
Aboard (Autism Connection of PA) on Facebook