Tuesday, April 19, 2011

Mother of A Child With Autism

Amy Spurway

I am many things. I’ve got lots of labels. Mother. Writer. Wife. Gen Xer. 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 April is Autism Awareness month. Of which I am all too aware, thank you very much. Or maybe it’s because I spent the better part of last evening at a mom-blogger workshop 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 my daughter Roo’s kindergarten teacher and Special Needs Assistant, discussing her refusal to follow instructions, and her “violent outburst.” Or maybe it’s because it’s just my reality, my most significant label. 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's wind for all I know. Right now, for me, it means that we can’t go to a movie theatre because the ambient noise and sensory overload might make Roo go ballistic. It means that 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, being the Mother of a Child with Autism 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 us Autism 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. No two exactly alike.

Human beings, even the non-autistic ones, like predictability, patterns, and for everyone and everything to fit into neat little clearly labeled boxes. And therein 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. I'm not a grieving wreck or a blindly blissful neurodiversity cheerleader. But I’m sure I’ve been pegged as each of these things, and squished into the compartment of every other phony archetype in the minds of people who only hear that I’m a Mother of a Child With Autism, who can’t grasp the complexity of the situation, who can’t see the many shades of grey that inhabit the space between black and white.

Being the Mother of a Child With Autism is hard. Some days, my heart breaks a dozen times before breakfast. Some days I get bitten and scratched and screamed at. I go weeks and months without the spontaneous hugs or an 'I love you mommy's that other mothers take for granted. 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 needs a different level of support and understanding from me and from the rest of the world, but 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. I am stronger, tougher, more determined as a result. But I am also more patient, more flexible, more compassionate, and more grateful for the little things than I ever could have imagined.

I am, among many things, the Mother of a Child With Autism. And although the average person might nod knowingly when they hear that because they saw an episode of Parenthood or Doctor Oz, no one except me really knows what that means to me and my life.

Whatever. It’s just another label. And as the Mother of a Child with Autism I've learned something very important about labels: It is just as useless and irritating to stitch them on people as it is to stitch them on clothes. Sometimes it's better to rip them off before they drive you nuts.

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A version of this essay originally appeared on Amy's now defunct blog, Domestic Blister.