Thursday, 20 March 2014

Madonna and Autism

When Alex was little, he had almost no language.  He didn't really start to speak until he was almost four.  Today, he's fairly good with functional language, telling us what he wants (or doesn't want) fairly reliably.

When he didn't speak, one of the things he did respond to was music.  Since I could only tolerate so much "kid's" music, I played him music which I liked: Bon Jovi, ABBA, Phil Collins and Madonna (among others).

He really liked the Madonna music and would sing along, albeit it somewhat garbled since he wasn't really listening to the words.  (His favourite was Like A Birgin.)  This repetition without understanding is called echolalia.  With the help of our speech therapist, we used the echolalia to encourage him to speak more and pay more attention to what other people were saying.

Thus, it is fair to say that Madonna helped us to discover how to connect and communicate with our son.  We sang songs everywhere, at home, in the car, at the store.  For three and a half years, I sang "Drowned World/Substitute For Love" as a bedtime song each night.  One of the first things he ever spontaneously requested was "Dancing Pencils" which turned out to be a video of Madonna's Confessions tour.

A few years ago, I wrote Madonna a letter explaining the impact her music has had on our family.  I never heard anything back, which doesn't surprise me.  I would be surprised to discover she'd ever actually read it since I assume she has a whole staff of people who deal with such things for her.

It doesn't stop me from occasionally fantasizing that maybe she would be touched by the story.  Maybe she would name an album or a song after Dancing Pencils in honour of her littlest fan.  Or maybe she might even want to meet Alex to sing him Drowned World herself.

I even tell myself that someone with autism would be a perfect friend for a celebrity as they wouldn't be impacted by the social expectations of flattery.  They would be honest and treat the celebrity the same as anyone else.

Of course, the reality pin pricks the fantasy bubble fairly quickly.  There is a reason why celebrities tend to drift towards cancer kids or Downs' kids instead of kids with autism.  It is precisely because the kid with autism won't treat the celebrity any differently or recognize the specialness of the occasion.  If Madonna came to our house and sang Drowned World, Alex would probably stop her to request that "Mommy sing" or ask for "A Thousand Miles" (his new bedtime song) instead.  Because to him, that's how the situation should work.  He might be happy to watch Confessions with her, but he'd get just as annoyed with her as he does with me if she tried to interrupt or sing along.

At the end of the day, it doesn't matter if Madonna never learns about our family or all the hard work we put her music to.  Because it's not about her.  It's about us and our love and dedication to our child and our stubborn determination to help him to communicate.

We're the real stars of the story.

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