Family Matters

Halle France has no idea why she can't tap into state services for the mentally retarded. Neither do the pencil pushers who are sitting on millions earmarked for kids like her.

"Long-term prognosis is not good. Long-term chronic developmental physical problems. Brain-damaged, multiple functional deficit[s], growth and development."

 

--Halle France's pediatrician, March 1991

 

Halle France is ten years old. She plays with her "Kellys," a posse of diminutive Barbie-style dolls with flowing golden locks. She takes swimming lessons. She cranks the radio to KOOL 108 and sings along to Nancy Sinatra or the Chiffons. She roughhouses with her brothers, with neighborhood friends. She is a cute kid, with a big smile and a boisterous laugh. But she is not like most other ten-year-olds.

In her short life, Halle has been prodded by more doctors, and viewed by more psychiatrists, than most grownups ten times her age. She was born to a severely retarded and epileptic mother whose seizure medication had caused a birth defect in the unborn Halle called fetal hydantoin syndrome. Because of the birth defect, Halle has a flat forehead and nose, which cause her no end of sinus troubles. Her drooping eyelids don't close all the way, even in sleep; she has had surgery to fix them but still must crane her neck to see. Her feet are flat and she has a tendency to walk on her toes, so she wears leg braces at night to stretch her calf muscles. Her elbows are permanently bent; she may one day lose the ability to use her hands and arms at all. When Halle stands, her feet point out like a penguin's and her back arches slightly. Her arms and legs are wispy, making her look like one of those rubber stick-figure toys whose skinny limbs bend every which way.

Halle's IQ is probably between 40 and 50; it's hard to know exactly, because it was measured before she began to talk at the late age of six. Mentally, she functions at a level roughly equivalent to a five- to seven-year-old. She still wears a diaper at night. In her early years, she displayed autistic tendencies, ranging from licking doorknobs to banging her head on the wall. She is easily agitated if her routine is changed, or if she's introduced to unfamiliar people or places.

Tania Robinson and Bruce France adopted Halle when she was 2 1/2 years old. They knew that raising a child with a disability wouldn't be easy, they say, but they were told she'd blossom in the embrace of a loving family. They assumed they would get help making that happen.

People tell Robinson how kind she is to have opened her home to a child with a disability, that she has earned a place in heaven. Though it seems like a compliment, the words chafe more than they comfort. The couple had three sons, but Robinson had always longed for a daughter. "We weren't thinking heaven. We were thinking selfishly," Robinson says. "We weren't out there saving kids. You don't feel really heaven-bound when that wasn't the plan. The plan was shopping for little pink dresses."

But instead of pinafores, they got violent tantrums and inexplicable behaviors. The first pediatrician they took Halle to recommended the family return her, Robinson recounts with a caustic laugh. "He said, 'This child will destroy your family, your marriage. You are never going to have a relationship with her as you would with a normal person, and she's going to destroy your family.'"

Even a clerk at the social-security office suggested that Robinson stop the adoption. Robinson had gone there to register Halle for a social-security number, and, as was frequently the case, the toddler threw a fit. After hearing Robinson's saga, the clerk gave her a phone number to call to prevent the adoption from being finalized.

"I had the number on a piece of paper on the fridge," Robinson remembers. "I never called it. But seeing the number made me feel better." She couldn't imagine sending Halle back to the home where they'd found her. She just kept believing that there was a web of social services out there to assist families like hers.

Yet for seven years Robinson has jumped through seemingly endless bureaucratic hoops to try to get services designed for kids like Halle. And she has learned so much that now she works as an advocate for the disability-rights organization Arc (formerly known as the Association for Retarded Citizens). But despite the family's persistence, Halle still hasn't climbed to the top of the waiting list for services.

Instead the result, which experts say they see all too often, is that in the long and thorny years since they took Halle from the medical foster home, the family has crumbled. Robinson and France have divorced; their four kids now shuttle between their parents' two homes. Both parents struggle to pay bills and have had to switch jobs. Caring for Halle has been the sole mission of the family.

"Everything we learned, everything we did, we did on our own, out of desperation. People weren't coming in and saying, How can we help you?" Robinson says. "It was so hard on all of us. It made trying to be married very difficult. If we had had the right kinds of services at the right time--even now--it would go a long way to making things better for her, because the rest of the family would be better off. There's never a break."

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