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This is what it’s really like to have a child with autism

May 3, 2016

My husband and I are at our local garden store, running errands on a typical Saturday, when Mae, our 8-year-old, becomes agitated. She quickly goes from bunny-hopping down the Azalea aisle — smile on her face, dimples on display — to growing fidgety and vaguely cranky to screaming and hitting herself. The sound is horrifying. Heads turn toward us.

Mae is wearing a bathing suit under her leggings, not because we plan to go to the pool but because she still wears diapers and recently developed a habit of removing them. In this moment, she's got rock-star hair: What's usually a neat black pageboy is sticking up four inches, thanks to the way she compulsively rotates her head back and forth in bed as she falls asleep. Her beautiful long eyelashes now are plastered together with inconsolable tears — trying to intervene only ever makes it worse.

I don't want to foist this on other people, and I want to protect my daughter. So I scoop her up — for now, at 48 pounds, she's still light enough to carry — and take her back to the car, where I can strap her into her car seat, keep her from hurting herself and limit the sensory assault on her brain.

It occurs to me that it's Autism Awareness month, and we've just hosted our own autism awareness event at the store.

I'm not always the best spokeswoman for autism. I toggle between wanting people to understand our daughter and wanting to behave like a normal family running errands on a Saturday. Some days I don't feel like having to explain to strangers in line at the grocery store that she doesn't speak, or having to identify myself at a school board meeting as a parent of a special-needs child.

I'm cautious about putting Mae in unfamiliar situations. She depends on her environment for context, and she depends on context for communication. If she leads me to the bathroom and puts my hand on the tub while removing her shirt, it isn't hard to figure out she's in the mood for a bath. When I take her out into the world and the context changes, it becomes more difficult for her to convey what she wants. So we don't go to restaurants or movie theaters, and I graciously decline invitations to backyard barbecues, rather than risk ending up with a frustrated child in a screaming, self-injurious tantrum.

At the same time, I realize that if we never take her anywhere, we are doubling down on the isolation that can come with autism. I know that families like ours need to open up about the reality of our lives if we're ever going to get the sort of support we need and if the world is ever going to make a place for our children — while they're still children and when they become adults.

The reality of autism is that parents often have to fight for their children to receive an "appropriate" education, however that is defined. By law, we aren't entitled to "high-quality," just "appropriate." My family lives in Northern California, in one of the wealthiest counties in the country. Yet the chaos in Mae's classroom last year, with seven other nonverbal children, was such that when she came home from school one day covered in her own blood, nobody knew how it happened. The four staff members were so overwhelmed that they regularly sat the kids in front of a television and turned out the lights. Neither our daughter nor any of her classmates appeared in the yearbook; it was as if they didn't exist.

The reality of autism is that when my daughter graduates from high school, the only system that exists for her is a regional county-run day center. I toured one several years ago. Picture a room filled with people whose bodies are adult but whose behaviors are those of young children. Some did small craft projects, gluing Scrabble pieces to magnets; some just sat and rocked back and forth; some paced around, with their hands flapping.

The reality of autism is that the bills can knock the wind out of you. The Centers for Disease Control and Prevention estimates that compared with the average child, it costs $17,000 more per year to raise a child who is on the autism spectrum and $21,000 more per year to raise a child with severe autism. The nonprofit Autism Speaks suggests that the average cost of lifetime care for nonverbal individuals is $2.3 million. Most states require health insurance to cover at least a small portion of behavioral health and speech services in the early years — though the number of therapy hours that insurance will even partially cover tends to go down after early childhood.

I'm always running a cost-benefit analysis on the professionals who come in contact with Mae. It wasn't worth pillaging our 401(k) for the speech therapist who held up a picture of a pig in front of my daughter while repeating the word "pig" louder and louder. But for the good ones — the therapists who will touch Mae's face, coax sound out of her mouth in small chunks and reward her efforts with enthusiasm — I find myself spending hours on the phone with insurance company call centers and engaging in creative math that assumes we will never retire.

The reality of autism is that it is relentless. It doesn't take off weekends or federal holidays. My husband and I will never have an empty nest. And every day, we worry about who will take care of our daughter when we no longer can.

It's a struggle to reconcile my love and acceptance of my child with my resistance to settling for the world as it is. I won't dance at Mae's wedding, and I may never hear her say "Mom." But she's an amazing kid. I adore her belly laugh, and I get a kick out of how she can jump higher and run faster than anyone else in our family. I want more for her than a future in a regional center making refrigerator magnets.

And so we venture out. Some days, we end up having to retreat to the car. Other days, she surprises me. I thought bringing her to a family friend's barbecue — an activity centered on talking and eating, neither of which are Mae's thing — would probably result in tears. But when I finally did, it was someone else's 8-year-old, a neurotypical child, who had the meltdown. When I looked over at Mae, she was jumping into the pool, holding another child's hand and laughing.

(Source: chicagotribune.com)


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