By Ray Stern
By New Times
By Amy Silverman
By Stephen Lemons
By Stephen Lemons
By Monica Alonzo
By Chris Parker
By New Times
"But you can look at Madeline and tell what's wrong with her," Cheryl said. "You can't tell, by looking at Sophie. I need to protect her."
I kept pressing, still clueless, and finally, Cheryl blurted it out:
Oh. DUH. How could I have missed it? There was my example, my anecdote. I e-mailed Cheryl after class, and she eagerly agreed to open her home and her family for storytelling purposes.
The Fishers live in far north Phoenix, in a small enclave not far from Anthem. Their home is neat and bright, with a big wooden kitchen table that appears to serve as the epicenter for most family activities. Cheryl is obviously very organized, and you'd have to be, to juggle the schedules of three active kids, all of whom have complicated school, therapy and medical schedules. With a clear-cut medical diagnosis and the accompanying mental retardation (although even with Down syndrome, someone still has to "test" your 3-year-old to determine she's mentally retarded), Madeline easily qualified for state services. Cheryl fought hard to get Zachary, who is now 3 and has a mild case of cerebral palsy, qualified for the public special-needs preschool.
She pushed the hardest for Sophie. And while Cheryl isn't so crazy about sharing Sophie's diagnosis of autism with the world, for fear it will brand her daughter (because to look at her, Cheryl's right, you'd never know), the Fishers actually sued their local school district to get Sophie labeled autistic, so she could get the right services.
"We went in there with medical reports pardon the expression out the ass," Cheryl says.
Cheryl rushes through her story, mindful that at any moment, the bus will deposit her kids at the front door. It's the last week of school, and Sophie's been out of sorts. Transitions are hard.
"This morning I went to hug her and she freaked out," Cheryl says.
The kids tumble off the bus and deposit their backpacks at the front door. It's obvious at first glance that Madeline has Down syndrome. Cheryl always has to laugh, when she talks about her younger daughter. One of the hallmarks of Down syndrome is a cheery disposition, but apparently no one sent that memo to Madeline, who her mother says can be downright mean. Cheryl laughs about it she clearly adores Madeline, who does, in fact, walk in with a scowl on her face, eager to get to the kitchen table and her Wiggles coloring book. Neither Zachary nor Sophie appears "special" in any way, although it does become apparent, when she joins her sister at the table, that Sophie has some challenges. Like many autistic kids, she doesn't usually meet your eye. Like her mother said, she is out of sorts, inconsolable in a quiet way wandering in and out of the house, from the backyard to the kitchen. Madeline finally cracks a big smile, pumping high on a swing just outside the arcadia door, instantly smudged from so many exits and entrances. The kids interact, but not much. During my visit, there are no big meltdowns, no temper tantrums. Just lunch, and several sippy cups.
I had been associating the whole denial thing with the lack of a medical diagnosis, but the interesting fact about Sophie Fisher is that she's one of the few autistic kids out there who does have a medical explanation for her condition. She's got Fragile X, a genetic syndrome that affects the 23rd chromosome. It results in mental retardation and, often, autism. The Fishers didn't know Sophie had Fragile X when they agreed to adopt her; they knew her mother was a carrier and assumed she would be, because commonly, Fragile X is passed from mothers to boys. It's very unusual for a girl to have it.
A genetic condition is responsible for Sophie's autism, and the Fishers aren't responsible for Sophie's genes. Maybe that's why Cheryl clashes so often with other parents on the autism support message boards. She goes nuts over the parents whom she says spend all their time looking for a cause and a cure for their kid's autism, worrying about vaccines, she says, to the detriment of the health of their own kid and other kids, not to mention the time they miss just being with their child. Cheryl shared one of her posts, which read in part:
You know what? I don't CARE that a gene made my children "different"; in fact, I know it DID! (We have genetic results to prove it!) I would LOVE to know: has YOUR child been genetically tested? Do you know FOR SURE your child DOES NOT have Fragile X, or might that possible reality just be too scary to explore? Can you even consider that, regardless of the centuries old "mess" we humans have made upon our world, that you, in fact, may be the partial cause for your child's disability?
With all the talk about "causes" and "cures", maybe the thing that needs to be said and sadly never is is simply this: WHO CARES!? Your child has Autism. Maybe they have a genetic disability that, if you had them checked, you might know about, too. This might be helpful for your child as they grow up and maybe plan their own families someday. Maybe someday you might find your cure. I hope, for your sake, you are successful. Me? I'll love and accept my children as they are, thank you very much. They are each special in their own way and, hell, if they were "perfect" you know, "blonde hair, blue eyed", in ways others once thought an ideal race should be then my husband and I would not even have them. Their own biological parents would have kept them, and maybe everything would have been "perfect" . . . for them.