Portraits of Autism - Guest Post from Kim

This week, I'm conferencing in Prato, near Florence. Yes, I will make sure I don't spend all my time in the conference and plan on doing some exploring. And I'm taking Room with a view with me, which Better World Books duly delivered along with a guidebook to Tuscany. In the meantime I can't do a portrait, so I've asked my friend Kim, who has a fantastic blog in which she records her daughter's many and frequent words of wisdom, The Imcombobulation of an Incredible Imogenation, to write one for me.  Kim's daughter, Imogen, is a bit like a Dalai Lama with a sense of humour - you'll learn a lot from her, and you'll have a laugh in the bargain. Kim is also a great photographer and you can see her pictures on her other blog: As I See it: A Daily Photograph Journal.  Go and check them out for yourself.


I took Imogen and Julius to the Fringe Festival today. I’d been on my own last weekend and got to see two fantastic plays and I wanted to give the kids their first taste of fringing.

Edmonton hosts the largest Fringe Festival in North America. And it’s incredible. There’s a huge range of plays and performances. Thousands and thousands of people flock to the sites for non-theatrical entertainment as well—street performers, musicians, fortune-tellers, and other carnival favourites are scattered through the streets as are food vendors hawking grease, sugar, and alcohol. What’s not to love?

Well, if you’re two and a half or four and a half and fall on the autism spectrum, there’s potentially a lot not to love. Noise. Crowds. Unpredictability. People talking to you and expecting a freaking response. An appropriate response, even. Jerks.

But I refuse to keep my children at home, avoiding life and interaction just because it’s easier. For them. For me. Home is controllable in ways that the public sphere is not. There are no loud, sudden noises at home (save for the blasts of bass from drugged-out neighbours but that’s another rant story); there are no crowds in our living room; there is no music that cannot be turned off in an instant. However, there are no open spaces in which to run at home. There are no other kids to be near whilst running. There are no other people. Just the three of us. And contrary to popular belief, people with autism are not anti-social. They’re just social in different ways.
Julius likes to hug. He loves to hug. He gives me the greatest hugs I’ve had from anyone in my entire life. He just doesn’t like to be looked at when he hugs. So when we’re out, at festivals, parks, galleries, museums, zoos... wherever, Jude seeks out people, usually men, facing away from him, and charges forth with his chubby two year old arms full of love and appreciation and a yearning for acceptance and he hug-tackles those to whom he is most drawn. He hug-tackles with an enthusiasm I’ve rarely seen in anyone, for anything. And you know, most people love his unsolicited love. At the Heritage Festival, Julius nearly flattened a small Peruvian man. But that man managed to regain his balance and once he did, he scooped Julius up, kissed him, and returned that wonder-hug. Julius might not communicate through language but he makes his social desires very well known.

Imogen, like her brother, tends towards non-conventional social interactions. I’m trying to train her out of kissing people before introducing herself. She’s a lover. I bet the hippies would have embraced her. (But her hygiene is too good to be one of them ;) ) She is not a girl who wants to be home in the familiar company of her mother and brother. ‘New friends!’ is her rallying cry. Wherever we go, whatever we do, Imogen’s primary goal is the acquisition of new friends. The very best kind of new friend to encounter is one who runs. And runs. And runs. And RUNS. Wherever we go, whatever we do, she finds new friends who are into endless, aimless, hysterical games of chase. All the better if they like her ever-present drag queen ensembles. (She wants to be a drag queen or a soccer coach when she grows up.)

So, Hugger Extraordinaire and Future Drag Queen Soccer Coach in tow, I headed to the Fringe this afternoon, in search of a good time on all of our terms.

We had a bit of a hike to get to the grounds; parking is the greatest challenge (and triumph, when you find a spot!) of the Fringe. Upon arriving, all three of us were ravenous. I’d come armed with rice cakes, apple crisps, and pretzels. Somehow those all disappeared in the car, en route. We came upon a pizza vendor who offered pizza baked in a wood-fired oven right there, on the spot, in front of our eyes. Imogen was entranced. We ordered a four cheeser to please all three of us. After the intense excitement of the oven (Imogen recounted to the completely uninterested baker all her pizza exploits: “I had pizza in London with my cousin Courtney after we went on the big red bus; I had pizza in Turkey with my brother and it had salmon on it and it was late so my dad yelled at the delivery man and my mom said to him to leave the delivery man alone because it wasn’t his fault and my dad said I don’t care and then he put the pizza in the oven; I had pizza in Paris, France that looked like Mickey Mouse and I had to leave the pizza to go pee and then I saw Ariel and I had to kiss her and she got my pizza sauce on her face but that’s okay...), we all sat down to devour our lunch. Alas, the slices were too floppy (damn you, thin crust!) for Julius’s liking, so he abstained. Imogen and I gorged ourselves. Julius dealt with the apple and pretzel crumbs.

A full thirty minutes into our time on site, we arrived, with full bellies and not a meltdown in sight, at the Kids’ Fringe. The schedule announced a library performance at 2pm, just narrowly before Julius’s usual nap time. Imogen was delighted at the prospect. It was 1:15pm, so we hit the facepainting booth to kill time before the performance.

“I’m not going to be a jaguar this time, Mummy,” said the girl who asks every face painter at every face painting booth we’ve ever encountered to make her a feral cat. “I’m going to be a peacock. Do you think they can make me a jaguar-peacock?” Thankfully, rather than having to face the certain meltdown that a jaguar-peacock other than the one she’d imagined would provoke, the face-painters had a sheet of images for perusal; the only options. Imogen, a recent fan of the rainbow, went for the arches and clouds. She was somewhat disappointed by the lack of jaguar-peacocks but she can absolutely handle choosing from a pre-determined set. All was well. Julius would never in his wildest dreams entertain the idea of face-painting, so it was a simple one-kid, speedy rainbow affair before we moved on, still intact, still happy to the massive sand table.

Both children leapt in, bare-footed, to the expanse of false beach. Erm, well, an over-sized sand playtable to the other partakers, but a beach to my children. While other children dutifully filled and emptied the provided containers, Imogen and Julius pranced about as if dodging tidal pools. They dragged their bare toes through the sand, giggling and gleaming at each other, at me, and at the awestruck kids around them. Imogen did a hula dance and encouraged a little girl near her (who she did NOT kiss!) to join in. Soon, the sand play area was a heaving throng of toddler/preschool dance mania. That is, until one mother loudly and sternly told her eagerly dancing progeny to “settle the hell down and built a damned sand castle because that’s what this frickin’ place is here for” whilst rolling her eyes with a misguided sense of conspiracy at me. She got a glare in return. But the other mothers present heeded her call and urged their children to sit and build. Imogen eventually joined in. Julius took a flying leap off the table and headed for the hills the puppet theatre.

It wasn’t hard to get Imogen to join. Few opportunities for the active play she craves present themselves in a subdued sandbox environment. Julius ran circles around the puppet theatre while Imogen put on play after play using the monkey puppet. But he was a jaguar-peacock. And he was dancing on the beach in each and every storyline she developed.

Finally, the clock (or rather, my watch) struck two, and we headed for the performance tent. But... what’s this? The group that began at noon and was scheduled to run til 1:30 is still on the stage? Really? No one from the Fringe team is here to pull out their hook and drag the excessive performers off stage?

I popped Julius in the stroller; we circled the Kids area twice and returned at 2:05pm. Performance ongoing. But now they’ve added really, really, REALLY loud music to the mix. Imogen’s and Julius’s hands pop defensively over their ears. “Where’s the library group?” Imogen whine-demands? “Ay-ay-ay-ay-ayyaba-ba-ba-ba,” Julius protests, while rocking and hitting his head with his water bottle. We veer away from the performance tent again.

On our fourth? Fifth? Thirtieth? loop around the kids’ zone, Imogen spied a small group of people who were clearly the library’s performers. A princess in a paper bag, a dragon, a smug prince, and a woman struggling beneath a heavy load of books. It made me nostalgic for the days when I was in the library performances. Imogen made a beeline for them. “You’re the Paperbag Princess,” she informed the Paperbag Princess, “and your dress is ugly,” then turning to the smug prince, “and you are a bum.” The princess laughed and the prince appeared unaware. That s/he’d been spoken to. After Imogen had talked up mutual princesshood for a few minutes, I called her to rejoin her brother and me for more loops of the space in hopes that, stroller-bound and naptime looming, Julius might succumb to sleep. Such plans never materialize.

At 2:30, the group which had over-stayed its welcome on stage finally, finally departed. The library performers swooped in and, amazingly, took to the stage almost immediately. Robert Munsch’s Paperbag Princess played out in Reader’s Theatre format before Imogen’s eyes, to her delight. Julius shook his head, flapped his hands, and hurled his water bottle into the crowd. He and I departed the tent, back to looping, with very frequent swings by the tent to check on Imogen.

By the time the performance ended, it was after 3pm. Julius usually conks out for his nap at 2:15. He was inconsolable. Offers of water were met with the water being thrown; offers of hugs and squeezes were met with headbutts. I ushered Imogen out of the tent at top speed and headed for the car, Julius screeching as we high-tailed it out of the Fringe zone.

A few blocks into our hike back to the car, Julius calmed down. Imogen took her hands off her ears. Away from the crowds and noise we all relaxed. The tension in our bodies dropped.

“Mummy,” said Imogen, “I really loved the Fringe. I really loved the Paperbag Princess. I really loved the sand and the puppets and getting my face painted. Thank you for taking me there where I had so much fun.” She trodded along holding the stroller. Julius shifted his body so he could see his sister and grinned.

In the car, neither child fell asleep as I’d suspected they would. Instead, they held hands while Imogen recited over and over (and over and over and over and over) the words exchanged in her encounter with the Paperbag Princess. And I couldn’t have imagined a better outcome to our afternoon if I tried.

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