Monday, April 30, 2012

Anything can happen if you let it.

Ryan at his first Broadway show.
I could start by saying that Mary Poppins isn't the best Broadway musical for kids; it's a long and very uneven show, with lots of slow, talky parts between the fun production numbers (I completely agree with the New York Times' review). But I don't want to diminish the amazing experience we had seeing a special autism-friendly performance of Mary Poppins on Broadway this weekend.

The good folks at the Theatre Development Fund (TDF), working with Autism Friendly Spaces, offered the second-ever performance of their Autism Theatre Initiative to make Broadway shows more accessible to families with a member on the spectrum. They opened a door for our kids that many of them had been unable to go through previously without generating lots of disruption and dirty looks.

TDF thought of just about any obstacle that might keep a person with autism and his family from feeling comfortable seeing a show. In advance of the performance, ticket holders could download a customizable social story written specifically for the event. There were designated quiet areas where kids could take a break if the show became too much for them, and fidget toys and earplugs to use during the performance. The production team made slight adjustments to the lighting and sound of the show to make the sensory experience less jarring. Volunteers throughout the theater held up unobtrusive glow sticks to alert the audience to loud parts (like applause). The entire theater staff and cast went through sensitivity training. The volunteers handed out PECS cards with relaxation techniques and a handy cheat sheet to show the difference between what each character looked like in the movie vs. the play.

Seriously, these people thought of everything. The ladies room was turned into a "family restroom" so moms could take their 12-year-old sons to the bathroom without issue. While I was standing outside Ryan's stall before the show, I made eye contact with another mom standing outside her too-old-for-the-ladies-room son's stall, and we both smiled and remarked how wonderful an event this was already. There was no question I would keep an eye on her son while she used the restroom - everyone in that room got it.

At curtain time the house lights dimmed but did not go out. The show opens with some needlessly talky exposition, and the kids made their disinterest known by retreating into their respective stims. But during the musical numbers or other scenes with more visual elements, our kids were totally engaged: the boy next to Ryan air-drummed with pretzel rods; some children sang along; a boy behind us repeated lines that pleased him; Ryan's toy alien danced.


I had prepared Ryan for the show by renting the 1964 film. He had me fast-forward through the scenes with dialogue and repeat the musical numbers. It seemed the audience at this performance would have liked to do the same with the live actors. There's no pretense with kids, and there's even less pretense with autism: if a kid on the spectrum thinks a scene is boring, he will stim at full volume (at one point in the second act, Ryan actually launched into his "Boring! Super boring! Mega boring!" script). I don't know how the actors were able to maintain their concentration with all the chaotic noises coming from the audience, but somehow they powered through.

Ryan's favorite song from the movie was Step In Time, the chimney sweep number. At the end of Act I Bert appears dressed as a sweep but doesn't dance. As the lights came up for intermission, Ryan looked confused. "Where's Step In Time?" he asked. I checked the program and assured him it was coming in Act II. I wish I could have taken a picture of his face as he watched the dancers perform Step In Time: he was in love.

When that number was over, though, he was pretty much done, and chattered to himself for the rest of the second act. I tried to keep his volume down, but I knew everyone around me understood what was going on. And that alone was worth the price of admission.

Imagine this graphic blown up on a full stage-width scrim as the dancers spelled out
Supercalifragilisticexpialidocious with their bodies. Yeah, Ryan was into it.


Tuesday, April 24, 2012

I'm not a Helicopter Mom; I'm a Sherpa

Sir Edmund Hillary, Colonel John Hunt, and Sherpa Tenzing Norgay at Mount Everest.

Everyone loves to hate Helicopter Parents: the ones who grab all the Easter eggs at the egg hunt to guarantee their child doesn't walk away without finding one; the mother who calls her grown child's employer to negotiate a better salary on his behalf; the mom who wipes her kid's butt long after she's capable of doing it herself.  We mock parents who shield their children from any of life's challenges, preventing their kids from learning how to handle problems on their own.

When you're a special needs parent, it's easy to look like you're helicoptering, even if you're not. I want my kid to snap his own pants, but so far he lacks the hand strength to do it, so I am forced to help. He works on this with his Occupational Therapist at school and with me at home, but he still can't pinch the snap closed. So I make him go through the motions of snapping, and then I get in there and close the snap.

To the untrained eye I might look like a Helicopter Mom, but I like to think of myself as a Sherpa Mom.


Sir Edmund Hillary gets all the glory for being the first man to reach the summit of Mount Everest, but he never would have gotten there without Sherpa Tenzing Norgay, providing the expertise gained on his seven previous expeditions on Everest.

A Helicopter Mom follows her child around the playground to prevent him from climbing anything dangerous and scraping his knee. A Sherpa Mom watches her child at the playground so she can step in if he has been playing by himself too long and needs encouragement to interact with other kids.

A Helicopter Mom brushes her child's teeth for him. A Sherpa Mom puts the toothbrush in her son's hand and holds her hand over his to show him how to brush his own teeth properly.

A Helicopter Mom speaks for her child. A Sherpa Mom models appropriate language so her child can learn to speak for himself.

A Helicopter Mom flies her child to the top of Mount Everest. A Sherpa Mom carries the oxygen and warms the soup so her child can climb to the top on his own.

Sunday, April 22, 2012

Hey, look!

Ryan has just started calling our attention to things he finds interesting.

"Mommy, look! There's a flower!"

"Daddy, look a little bit! I made a square!"

"Look! The green fish is eating the letter Y!!!"

Your average toddler does this all the time. And I'm elated that Ryan has finally discovered the value in sharing things with us.

Along with this, he has discovered that if he calls out "Look, Mommy" when I'm in another room, he can get my attention. This is huge.

If this is such a wonderful turning point, why am I a little sad?

I tried looking at those daunting child development charts to get an idea of when neurotypical kids start to draw your attention to things, but it's such a basic element of being human that I didn't find a single such chart that even mentioned it. I remember why I stopped looking at those charts years ago: I got tired of their striking irrelevance to our lives smacking me in the face, dangling our Otherness in front of me. Reading what a typical two-year-old can do that my way-older-than-two-year-old struggled with or had not even begun to struggle with made me dwell on Ryan's delays and limitations instead of on his strengths and accomplishments.

So while I feel like I should be celebrating how far Ryan has come, I find myself choking back thoughts of finally, and what the hell took us so long to get here.

And why does my baby have to grow up so fast?

Captain No Teeth

Friday, April 20, 2012

The Family Secret

Recently I read Eustacia Cutler (Temple Grandin's mother)'s memoir, A Thorn in My Pocket. The most striking thing about the family story is the extent to which Mrs. Cutler bucked the common wisdom of the time: in an era when children with "childhood schizophrenia" or "retardation" were routinely institutionalized and isolated, Cutler kept Temple at home and taught her to socialize.

In discussing the book with my parents, I learned a shocking story from my own family's history - one that I find it hard to believe never came up in conversation at any time over the last 36 years.

My grandfather's younger sister, Molly, had Down Syndrome. As was the custom in the early 1900s, the family had her institutionalized. At age 10 Molly was sent to Letchworth Village in Rockland County, NY. The family would visit her once or twice a year, take her out for ice cream, and trek back to Brooklyn. After every visit, Molly's mother would spend days in deep despair, wondering if it would be better to bring her youngest child home, and the rest of the family would assure her that Letchworth was the best possible place for a girl like Molly. According to my father, the family's biggest fear was that a young "Mongoloid" woman would be easy sexual prey at home, and institutionalization was the only way to protect her from being raped.


Letchworth Village for the Feebleminded and Epileptic was established in 1909 to care for individuals with developmental disabilities. The facility was proud of its dedication to training the less-handicapped residents to perform farm labor on the premises - this was progressive stuff at the time.

Letchworth was over-crowded and under-funded; residents were often malnourished and left naked for lack of food and clothes. The residents were also the subjects of medical experiments - eugenics studies and vaccination trials. Male and female patients were kept segregated to prevent bringing more Idiots into the world, but despite my family's best intentions, Letchworth was not immune to sexual abuse.

 Many who died at Letchworth were buried near the premises in graves marked by numbers, not names; their families had been too ashamed of the stigma of mental illness to want those names displayed in public. I am pleased to report that when Molly died (from choking on food - as my father notes, this was before the Heimlich Maneuver had been invented), she was buried near her mother, with her name on her headstone.

I never heard my grandfather mention his sister Molly. My father thinks she was a tremendous source of shame and embarrassment to him. And for whatever reason my dad never told me about her before today. He says that when he was a child and saw his grandmother in distress after a visit with Molly, he was convinced his aunt was better off at Letchworth than she would have been in Brooklyn.

In the early 1900s, a child like Ryan would have been locked away in an institution like Letchworth. He would have been lumped in with the Imbecils, presumed to be incapable of learning to do anything more than yard work, and likely would not have received much of an education. He would have been left to wait out his days without love or human dignity.

What a long way we have come in the last century.

And what a long way we still have to go before the Feebleminded are able to be fully integrated into our society.

Wednesday, April 18, 2012

My son the doctor

Some folks say that people with autism lack empathy. This is bull.

Last week I came down with the plague. The whole family eventually followed suit, but, you know, I'm a born leader.

So I'm lying in bed with a fever, miserable, when the door opens and Ryan walks in with a glass of chocolate milk.

For me.

It seems that Stu had explained to Ryan that Mommy was sick and needed to rest. Ryan immediately announced, "We got to make him [sic] feel much better!" Stu asked what would make Mommy feel better, and Ryan replied, "Maybe a snack would help. I got to make him chocolate milk with a straw!"

And then Ryan poured me a glass of milk, stirred in the Nesquik, got a straw, and carefully carried the glass to my room.

And you know what? I felt much better after that.

Monday, April 2, 2012

Awareness

Were you aware that yesterday was World Autism Awareness Day?

Honestly, I wasn't aware of that until late last night. Because, you know, I was too busy being aware of autism.

Over the last week or so I've found myself cringing whenever Ryan and I go out in public together because his desire to engage with strangers, combined with his, er, peculiar grammatical constructions, thrust our otherness right out front, and sometimes I just don't want the world to be so Aware of us. When Ryan runs toward a stranger at full speed, halts six inches shy of crashing into that person, and shouts either an all-vowels greeting/assault or a full-out "Hi there anywhere yet!," I know I should be pleased that he's trying to interact, but instead I sometimes feel paralyzed by that "omigod, you're embarrassing me in front of my friends" feeling I thought was unique to teenagers.

Don't get me wrong, I'm thrilled that Ryan has learned that a polite way to start a conversation with a stranger is to offer them a compliment, but I felt a little awkward when he told the UPS guy, "I love your mustache," and more than a little awkward when Ryan told a toddler-toting mom in our building's elevator, "I like your girlie baby."

These are the kinds of candid statements that adults expect from three-year-olds; when they're coming out of the mouth of a fairly tall six-and-a-half-year-old, folks act a bit guarded.

And the younger the stranger, the more openly they express their confusion when Ryan runs up to them and says, "See ya later guys!"

Lately I feel the need to remind myself not to make excuses for Ryan's behavior. Sometimes I'll give Ryan directions in phrasing that's more useful to the stranger than to him; the stranger might find "Sweetie, that's her personal space, let's take a step back" more comforting and disarming than the Ryan-centered directive, "arms distance." I feel compelled in such moments to bond with the victim of the awkwardness, rather than with my own son, the perpetrator of the awkwardness.

In theory, such moments are opportunities to discuss autism with strangers and spread the gospel of tolerance and inclusion.

In reality, sometimes I'm all, like, OMG, this is totes embarrassing.