Home Away From Home: Why my autistic children don’t live with me.

Image Source: Thinkstock
Image Source: Thinkstock

I’ve left Austin with my parents and am running up to my favorite place in the world. No, it’s not the Taj Mahal, the East Village, the Grand Canyon at sunrise, but a nondescript home in a beige exurb. I knock and Fe, who runs the home, lets me in. I proffer a box of chocolates, a small token of esteem, when suddenly I hear the footsteps.

I can hear him even before I see him, the quick breaths, his bare feet slapping out a rapid beat as he dashes down the cream-carpeted hall, and now here comes

Ethan! Ethan! Where are you running pell-mell?

He’s a tall ten-year-old but still as cute as ever, with wide eyes and a mouth like an O. He’s just shot out of the hall and into Chloe’s room. He doesn’t have time for me. He has important stuff to do. He’s on a mission. In his tiny brown hand he clutches something as precious as any gem from King Solomon’s mines.

As he runs, he syncopates up and down, up and down, with a rapid ska-like beat. I chase him into Chloe’s room, where he’s next to his big sister’s bed, springing off the balls of his feet to heaven. He’s so excited he’s hyperventilating, so that when he says the only word he knows, it comes rushing out, short and quick but most of all, excited: “OohOohOoh!” Then he opens his palm and rests his treasure on Chloe’s Disney Princesses bedspread. It’s a small, smooth rock. The sort of decorative rock you seen in an aquarium. Moss green.

Then he turns and dashes off. He hasn’t even noticed me. But that’s okay, he’s doing his thing, and anyway, now Chloe, thirteen, throws back her covers and, as she does on each visit, stares at me. She’s uncomprehending at first, but then, by sure degrees, her expression changes from confusion to dawning awareness and then she suddenly remembers me.

Her face lights up like it’s the first day of the world. She squeals and laughs — for she has no more words than her little brother — and throws her arms around me and holds me tight. As always, I think, This is the most amazing hug I’ve had in my entire life!

And all of a sudden it’s all worth it: the therapies, the struggles, the ominous words from people in white coats, because Chloe is laughing in my ear. Not any ordinary laugh, but a laugh that’s beautiful, melodic, like something you heard when you were a little kid and it was spring and the world was green and buzzing with life.

Ethan and Chloe are both autistic. And now, because of this nondescript place, this palatial tract home, they’re safe and clean and well cared for. Every time I visit and see Fe and Marcie and the others, the clean rooms, the gleaming kitchen, I feel so, so thankful.

It’s sad leaving them, but I know the sight of Austin will lift my spirits. He’s their big brother, an irrepressible bundle of teen angst and joy, and he needs me very much. He has autism too, only it’s the high-functioning kind: Asperger’s. He’s as brilliant as they are delayed.

For the rest of their lives, Chloe and Ethan will need help each time they go to the bathroom, and they will never be able to go out alone. Such is the peculiar nature of their disabilities that Ethan will run heedless into traffic and Chloe will take all her clothes off and dance on a roof thirty feet off the ground. All of which means that neither their mother nor I can assure their safety anymore. So three years ago, when Ethan was seven and Chloe was ten, we placed them in a home, where Ellen catches Ethan when he starts running at 4 a.m., and Fe carefully washes and braids Chloe’s hair. The staff there feeds them, and puts them on their school buses, and makes sure they are safe and cared for twenty-four hours a day.

With my mind free of worrying about Chloe and Ethan, I can focus all my attention on Austin. And he needs it. That kid could win a genius grant someday, although I’m not sure what for — perhaps something along the lines of (and these are just a few of his latest obsessions) Sumerian linguistics, Great Lakes paleontology or green engineering. First, though, he’s got to learn some basic stuff, like how to make sure his math homework is legible.

Austin was born in 1992, when the autism epidemic that today strikes one in 150 children was just beginning. There were no memoirs, how-to books, or websites for my wife and me. Early diagnosis and intervention, the bywords of today’s savvy parents, were unheard of. When Austin exhibited unusual behaviors — fascination with the wheels of his toy trucks, indifference to peers — specialists assured us that he was fine, just a little “eccentric.”

When Austin was three, Chloe was born. And for quite a while she was a marvelous, developmentally perfect little girl: alert, vivacious, happy, laughing and talking all the time. But shortly before her second birthday she began withdrawing and losing language. She’d spend hours spinning alone in the backyard. She jumped so frequently and so hard on the furniture that we had to get a new living room set. By this time my wife was pregnant with Ethan. Within months of his birth, all three children were diagnosed.

Those early years were very difficult. My wife quit her job to look after the children. We cajoled schools, insurance companies and the autism research clinic at the nearby university, in an effort to cobble together therapies that were often far beyond our limited ability to pay. The strain of chasing Ethan through a parking lot, of getting Chloe to look us in the eye, of deciding if the latest exciting but unproven dietary treatment would work for Austin, grew and grew. As so often happens with parents of disabled children, my wife and I divorced. Meanwhile, with each passing day, all three children were growing bigger and stronger. And while Austin was learning, Chloe and Ethan hit a plateau.

The group home has lifted a planet of worry from my shoulders. The group home has lifted a planet of worry from my shoulders. Now I can focus when I’m driving Austin from his psychologist to his Shakespeare camp, when I’m teaching him how to cook and clean, and when I’m taking him camping on Cape Cod or the canyons of New Mexico. Because of the group home, I am a much better father for Austin. Because of the group home, I can breathe.

Nobody has criticized me for placing Chloe and Ethan in a group home. Sometimes I wish someone would, though. Then I wouldn’t feel so lonely when I get down on myself. Logic, reason, not to mention vivid memories of my own rapidly vanishing sense of sanity in those last few months, all tell me that placing them was the right thing to do. But sometimes, in the still of the night, I get this gnawing sense that they should be home with me. It’s a haunted feeling that I don’t think will ever go away.

Article Posted 9 years Ago

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