3.10.2014

A bridge to her world

I'm at the point right now that I don't pounce at the plethora of autism-related articles making their way through the social media, unless it was written by someone I know or something about it REALLY captures my interest. So even though I noticed "Reaching my autistic son through Disney" pop up in my Facebook feed several times, it wasn't until a reader messaged me the link that I finally decided to skim it and see what the big deal was.

Well, it had me at the first sentence since the author started off describing his son's regression at 3. Every time I read regression stories they bring back a wave of emotion, the anxiety, the fear the author recalled - did he injure his head when we didn't notice, was he poisoned (we thought- brain tumor?), then brief relief, oh it's "only autism" then back to fear- now what?

I've talked about Sophie's regression many times but only touched on this topic- the role of Thomas the tank engine during and following the event. In the article, the boy Owen retained and fortified his love of Disney movies during his regression. For Sophie it was Thomas. While she has liked Thomas since she was about 16 months old, at first it was a typical toddler interest, one of many things she enjoyed doing. When she was losing skills, gradually all her other interests fell away, like leaves off the trees in autumn... But she was becoming more and more absorbed in Thomas.

The regression was a big mystery, it was no doubt the worst thing that has ever happened in our ten year parenting journey. Sophie was losing speech, social skills, she started vomiting, she lost weight- and then like a sea after a storm she settled. She started to feel better but was never the same, and neither were we. I sat holding her limp little body most of the day, watching Thomas. Throughout the next months, all the doctors, the evaluations, there was Thomas, always Thomas. If we turned it off, she didn't fight. Like a weak little bird she'd put her fingers in her mouth and fall asleep. We left it on.

I always felt that in that whole bleak scenario, Thomas was a thread that was tethering her to our world. She let us hold her and watch the videos with her. As she got stronger we noticed she would look at us, really look at us if we said lines from the show, so we did, often and with gusto. People would advise us to remove Thomas, said it was unhealthy, unnatural. And yet my gut was saying no, it's not the right thing to do. Thomas was a bridge from her world to ours. Why would we want to burn the only bridge we had?

Sophie rewinding with glee

Sophie has come a long way since the regression. She is strong and healthy and doesn't fall asleep when challenged. She likes to play outside, and go to school and play in the gym. She is learning to communicate, slowly. But Thomas is still the biggest part of her life. Now that she is on the ipad, we get to really see her preferences as she is able to select the episodes independently. We realized that she can watch the same episode over and over all day. What's more she stops it- every time - at PRECISELY the same moment (I mean precisely, down to the frame) and rewinds to the beginning again. All the while looking so pleased with herself, like she is having the greatest time ever.

We still speak in Thomas speak. The only time we get shared interest is when one of the trains smashes into a fruit cart or something. She gives us a wide-eyed look like "did you see that?!" And of course we muster up excitement every time. The only words she tries to repeat are thomas-related words- smash, bump, crash, biff! So we go with it. Her face is so natural, relaxed, animated, her laugh so earnest. Like in the article, when she is with Thomas, it's as if the autism is not affecting her. It's just a girl and her best friend, hanging out together in our living room.

Sweet smile for her bud

Anyone who watches her while she's with Thomas sees the emotions, the joy, the pure love she has for the show. I always believe she understands everything that goes on and follows the plot. I don't question why she needs the repetition- I do like familiar shows, not to the same extent but I know that familiar show feeling and how the characters become like friends after a while. Reading the article, and how Owen used Disney to make sense of real-life situations is something we frequently talk about- we do use Thomas-specific lingo to entice her to tolerate certain unpleasant events, having a wash-down for example... umm, I mean a bath.

This paragraph from the article really made me stop and think.

It’s as if Owen had let us in, just for an instant, to glimpse a mysterious grid growing inside him, a matrix on which he affixed items he saw each day that we might not even notice. And then he carefully aligned it to another one, standing parallel: The world of Disney.

I think Sophie does this too. Of course I don't have proof, but I have a feeling. I think somehow, when her brain was undergoing the change, for whatever reason, she latched on and somehow enmeshed with this show that she happened to like at the time. I wonder if the regression terrified her, or traumatized her even. Maybe she found the "real world" all of a sudden confusing and overwhelming. Thomas was there, same as it always was. Or maybe in that vulnerable state, her brain decided Thomas was the real world and we are just the supporting cast?

These are all things we think about, wonder about when we see her in carefree abandon watching Thomas, giggling heartily. It's all speculation of course, but still I think the answer is more complex than just "take away Thomas and she'll do other things". Like the author of the article, we use Thomas to enter her world and to connect with her there. And I'm guessing as she is re-entering our world gradually, it is through the Thomas bridge as well.

 

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