Mother Of A Child With Autism

2 04 2008

I am many things. I’ve got lots of labels. Mother. Writer. Wife. Self-obsessed panic-prone neurotic with duck feet. But today, the one that is bouncing around my brain like a four-year old with a face full of neon blue icing from a Little Mermaid birthday cake is “Mother of a Child With Autism.” Maybe it’s because it is World Autism Awareness Day, of which I am all too aware. Or maybe it’s because I spent the better part of last evening at a mom-blogger meeting talking to another woman with an Autistic kid. Or maybe it’s because I spent 20 minutes this morning standing in the school hallway with Roo’s kindergarten teacher and Special Needs Assistant, discussing her refusal to follow instructions, and her subsequent “violent outburst.” Or maybe it’s because it’s my reality. I am the Mother of A Child With Autism. 
But what does that even mean, to actually be the Mother Of A Child With Autism? That depends. Depends on you, depends on your kid, depends on the day, the moment, the position of the moon in relation to Neptune for all I know. Right now, for me, it means that we can’t go to a movie theatre because the ambiant noise and sensory overload might make Roo go ballistic. It means I expect her to eat sand and playdoh whenever it’s in reach, even though she is almost five. It means I know how to execute “the hold” that keeps her from hurting herself or someone else when her meltdowns get out of control. It means playdates aren’t really an option. It means I am a pro at deciphering her echolalia, the repeated lines from TV shows she uses to represent emotions she can’t otherwise express. It means I can do the Wilbarger Protocol with my eyes closed. It means that I actually know what the Wilbarger Protocol is. But for someone else it might mean something totally different. If you know one kid with Autism, then…well…you know one kid with Autism. And that’s it. The same goes for the Mothers. We’re like snowflakes. Some of us are fun and sloppy and unexpected, and some of us are sparkling and icy and driven, and sometimes we change in mid-air. Made of the same stuff, each falling to earth on a trajectory we can’t control, but no two exactly alike. 
Human beings, even the non-Autistic ones, like predictability, patterns, and for everyone and everything to fit in a neat little clearly labeled boxes. And there lies the problem. Even though I call myself the Mother of a Child With Autism, applying the label does not make me or my family any easier to understand, or to define. I’m not a tragic hero-mom who sacrifices herself and devotes her life to battling all things Autistic, desperate for a cause and a cure. And I’m not an over-anxious hover-mother who spent too much time reading shit on the internet and not enough time playing with my kid. I didn’t push doctors to pathologize my kid’s brattiness so I could play martyr or victim. But I’m sure I’ve been pegged as these phony archetypes in the minds of people who only hear that I’m a Mother of a Child With Autism, and can’t grasp the complexity of the situation, who can’t see the shades of grey. 
Being the Mother of a Child With Autism is hard. Some days, I wish Autism would fuck right off and leave my family alone. But I don’t feel sorry for myself or my family, and I don’t think my child needs to be “fixed” because she is not broken. She is who she is – weird and wild and wonderful – and that has played a role in making me who I am. The mother I am. So I am, among many things, the Mother of a Child With Autism, even though no one except me really knows what that means to my life. But I guess it doesn’t really matter. It’s just another label. 

 

 

 

 

 

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One response

5 04 2008
Jody

Brilliant!

Love you guys.

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