Sunday, April 23, 2017

Mythical Beasts and Where to Find Them



Our 10 yr. old neighbor rolled up to the house on Easter morning, as I was out having a cup of coffee with my neighbor/buddy cat, Henry.  "Hey - check out what the Easter Bunny brought me!"he chirped, and flashed his new, white sneakers.  "What did the Easter Bunny bring Liam?"

I hesitated for a moment.

In our house, there isn't a big deal made of presents around holidays.  Family members ask what Liam might like for his birthday or Christmas.  Usually, we suggest money, or art supplies, since Liam never really asks for anything.  And while he'd readily identify the Tooth Fairy, Easter Bunny or Santa Claus, if shown a picture, he never really associated them with getting gifts.  So on the one hand, we've never been pressured about presents for weeks (or months) prior to big holidays and birthdays, nor could we use the threat, "if you are naughty, Santa won't bring any presents."  We just got used to doing without the mythical beasts that dwell in most young children's imaginations.



So, to answer my young friend's question, I simply said, "Liam didn't get anything for Easter.  He didn't ask the Easter Bunny for anything."  It was clearly an unsatisfactory answer.  As it is when I tell my parents the same thing around Christmas or birthday time.  "He doesn't want anything."  I've heard this line used by parents trying to ward off a slew of presents for the child who has enough, but in our case, it's the honest truth.

When Liam asks for something, it's usually something like a graphics package or a plug-in for an editing program - something for which the giver needs passwords and access codes.   This year he DID ask for a special birthday present.  He wants a kitten, to replace our 16 yr. old kitty, who passed away a couple of months ago. 

That doesn't mean that Liam lacks imagination.  Instead of talking about the childhood trifecta of holiday heroes, Liam ascribes personalities to inanimate objects.  He's been known to hug a road sign, say, "hello" to a traffic cone and the other day, he discovered our P-Touch label maker and gave names to all of the objects in my husband's studio (Barry, Benny and Bruce, the drawers, were my favorites).

A big part of our life with Liam is completely letting go of what's "typical" and seeing what "is."  As he matures, it's clear he's aware of the world around him, but he is revealing more and more of the world inside him.  So, instead of excitedly showing off his Easter gift, Liam calls us into his room to see his latest video creation on YouTube, Adobe After Effects or BlocksWorld.

Last week, he produced a music video for his band director, Dan West.  I'd trade his excitement in creating that video for any holiday gift you could name.

Just before posting this, he wanted to show me something else - an amazing re-creation of a Mark Raetz sculpture, done in BlocksWorld.  His understanding of how to create this dimensional illusion blew us away.

I used to feel sad that we didn't share the same, magical universe as other families.  Now, we're finding the joy of watching the Universe that Liam creates for himself.

Monday, April 3, 2017

Always Have an Escape Plan

As anyone with an autistic child knows, in any new, public situation, there is the plan and then there is the escape planThe plan may be to go see the latest blockbuster animated film.  The escape plan involves taking seats on the isle, just in case the movie was mastered at "Voice of GOD" levels and your child starts to try to burrow under the seats to escape the noise.  Or, the plan might be to attend a dear friend's wedding.  The escape plan involves sitting in a less-populated pew, in the back of the church, again on the end, in case your child's inability to understand the protocols of church cause the need to exit quickly.  As time goes by, you find you need the escape plan less and less.  It might almost make you forget to make one.  Don't.

Last night, we attended what we hoped would be a cool experience for Liam, especially with his newfound interest in organ music.  We went to Walt Disney Hall to hear organist Felix Hell, perform a Bach concert.
Walt Disney Hall

The concert hall is an architectural masterpiece, a sweeping, soaring building on the outside and an interior designed to naturally amplify and reflect the tiniest of sounds. Visually, the space was captivating and normally the sonic sensitivity would be a dream-come-true for someone wanting to taste every note of a delicate piece of music.  The seats are designed so that no-one is ever blocking anyone's view.  In fact, everyone can pretty much see everyone else when the house lights are partially up, as they were in this performance - a fact I would later come to regret.

My husband said he knew we'd made a mistake when he read the evening's program: "Goldberg Variations, BWV 988."  Did you know that the history of this piece is that it was written to help the Russian ambassador to Saxony with his insomnia? Yes.  It is lovely, well known, popular and so goddamn tranquil that it only took about 10 minutes before trouble started.  Don't get me wrong, the organist was brilliant, but this piece, full of gentle, quiet passages was death-on-toast for an autistic 11 yr. old who loves the booming, soaring Bach of "Toccata and Fugue in D Minor."

The hall amplifies EVERY sound - not just those on stage, but a quiet rustling of a jacket (did I mention Liam was wearing a windbreaker?), a cough and of course, my son saying "I think I might have an allergy."  With those words, it felt like a prison-yard search light had been turned on us. We started whispering quick directions to Liam that he couldn't talk during the concert AT ALL.  He nodded and began to fidget instead.  His feet tapped on the ground behind what was, in Disney Hall's seating, the head of the person behind him.  Both John and I put our hands on his legs, and whispered to stop, which only escalated the fidgiting, the rustling of his windbreaker sounding like a thousand candy wrappers adding to the thumping of his feet.  We tried again to still him, which only resulted in his plainly spoken, "why are you saying "SSSSSHHH?" We were in real trouble.

And we were completely trapped.  I'd purchased the tickets on Goldstar. Part of my "new experience" strategy is to buy discounted tickets to events, to make the possibility of ditching less painful.  I had not had the option of choosing our seats, which were smack-dab in the middle of a row of about 15 people on either side of us.  There was no extra space in front of our feet to scoot out past the people beside us. Also, the folks in the row were mostly elderly, so asking them to move or even making them aware they'd need to move was going to be next to impossible. I was keenly aware that before the show even started it took about 10 minutes for an usher to explain to a very elderly couple in front of us that they were in the wrong seats and another 5 for the gentleman to stand, shakily and move down a seat.  Glancing at the row of white heads to either side, I could not imagine a quick or quiet exit that way.
Interior of the music hall for a different concert.  If you start at the top of the picture, center and look in the second row of the balcony, you can see where we were sitting.

Meanwhile the writhing and stomping had increased and was about to reach critical mass.  Liam was grabbing onto us, pushing his head into our bodies and we were practically laying on him, both to give him reassurance and stop the stomping, but I could hear small noises rising in his throat and see a panic creeping onto his face.  He could not contain himself at all and we couldn't help him.

I knew that whatever we did next would be seen by a nearly full theater of people,  but not doing something would result in ruining the rest of the performance for everyone there.  My husband and I sent urgent glances to each other.  We could tell we were running out of time.  We waited for a slightly louder passage in the insanely quiet music so we could make a plan.

He leaned in and whispered, "I see a way out," glancing behind us at open seats that extended to the last row of the balcony about 4 rows away.  "I see it too.  Over the top?"  He nodded "yes."  The music dropped again to a quiet passage and Liam was holding John's hand over his mouth. Liam knew it was a bad situation too, but he was about to lose it.  I watched him contort his face as he tried to contain his mounting anxiety.  I slid the Etch-A-Sketch Liam had been holding into my purse and snapped it shut.  The snap sounded like a bullet. 

Finally - another loud passage.  "Now or never,"  John said, hoisting Liam over the back of the chair, and with his extra-long limbs, carried him over the rows of seats - straight to the last row and out the exit.  Thankfully the people to either side made no disparaging remarks. They wanted us gone as much as we wanted to go.  I was able to climb over the first seat, but my short legs weren't going to make the other 3 rows.  One woman leapt to her feet and tried to pull me over the next row.  I thanked her but said I wouldn't make it.  Instead, I saw that there were only about six people in my new row.  By this point, there was no need to alert them - they all saw me coming, stood quickly and accepted my whispered apology "so sorry, we're leaving!" as I dashed down the row and followed my family out of the hall to the lobby where we regrouped.

We made it to our car and back out onto the highway.  "OH MY GOD, THAT WAS STRESSFUL!" he said - bursting with relief.  "I've never felt so trapped!"

"I know.  I kept hoping we could make it to intermission. I'm glad the people were helpful about getting us out of there!" (note - when we got home and studied the program, I saw there was to be NO INTERMISSION - see below).


We got home, made a shaker of martinis and went over the events, while Liam went happily back to playing Angry Birds on his iPad.

We didn't blame Liam for not being into the music - with apologies to all Bach/"Goldberg" fans, we weren't really that into it either.  It was insane to ask any kid, let alone an autistic one, to sit perfectly still for that.  We concluded that, after experiencing the incredible acoustics of the hall, we wouldn't bring Liam back there, unless it was a loud performance and we had isle seats.

For those people for whom we caused a distraction, we are sorry from the bottom of our souls.  But at least they'll have a great story.

And from now on, the first thing we'll do in a new space, is look for the emergency exits.

Footnote: In relating this story to my mother-in-law, I found out that at least one of her friends was AT the concert last night.  I guess I'll find out what stories others will tell about us, after all.