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Family Matters

"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."

 

Name: Halle France. Date of birth: 8-22-90. Behaviors identified, self-injurious: Head-banging, bites and scratches self to pt. of bleeding, bites inside of mouth to bleeding, pulls skin to pt. of bleeding, head-butts others, will run into traffic if not restrained, licks furniture, doorknobs, other items. Very impulsive, no judgment. Injurious to others: Pushes others, bites others, scratches, head-butts. Property destruction: Severe tantrums, throws objects, breaks numerous household items, kicks things, can chew up clothes.

-- Medical Assistance evaluation,
May 1995

Tania Robinson always wanted a daughter. Growing up in Puerto Rico, she was close to her mother and sister and the other women in her extended family. Even though Robinson's family moved to Virginia when she was 12, she and her sister spent summers in Puerto Rico with their grandmother and aunts. "They'd come together every night at one aunt's house. They'd talk, visit, eat. The women are the ones that keep the family together. They're the glue," Robinson remarks. "These women, they're so important to me, I can't imagine my life without them. Part of it for me was to have a daughter to bring."

Robinson has three sons: Clifford, 17; Dylan, almost 15; and Morgan, 13. But she still wanted a daughter, and she started thinking about adoption. "I was watching the Phil Donahue show, and they were talking about adopting wards of the state. I thought it would be a cool thing to do," Robinson remembers. "I was naive and idealistic about where I was going with this."

Her husband went along with her, even though the quest didn't consume him the same way. To qualify as adoptive parents, they went to parenting classes and were scrutinized by social workers. They had few guidelines for the child they wanted: a girl, younger than Morgan, preferably non-white. They were open to a child with disabilities. At the time they lived in Florida, a state that had stringent rules about interracial adoptions--and it was an arduous, painful process even to classify the couple as a particular race (Tania, who is from Puerto Rico, is biracial; Bruce is Caucasian).

Robinson first wanted to adopt a nine-month-old girl whose mother had died of AIDS, but was thwarted by a social worker who placed the girl with another family. Then, through a private agency, Robinson located a 16-year-old African-American who was pregnant with her fifth child, a girl she wanted to put up for adoption. The couple helped the girl all the way through labor. "We were good to go," Robinson says. "We had the crib, we had the little baby clothes. Then the mom said, 'We're keeping her.'"

Around Christmas of 1992, a social worker called and told Robinson about a little girl with fetal hydantoin syndrome. She was living in a medical foster home, the oldest of ten kids there. "I expect her to blossom once she gets out of there," Robinson remembers the social worker saying. Robinson looked over the girl's file, but "there was precious little information about this kid. This little girl had fallen through the cracks. The foster parents were getting her check, but no one was going out there to check on her."

Robinson researched fetal hydantoin syndrome and learned that it causes some severe physical disabilities. It sometimes, but not always, causes mental retardation. She talked about it with her husband and sons. "It didn't sound so terrible," she says. So she and Bruce went to meet the girl at the foster home, which was run by an older white couple. "They were really racist. They just didn't like her very much," Robinson recalls. "They were talking about how difficult it was for them: 'It wouldn't have been so bad if she weren't so black, but she was so black.' They wouldn't go anywhere with her."

The child was nearly 2 1/2 years old but weighed only 16 pounds. Her knee was the biggest part of her leg. "She just glommed onto me," Robinson says. "We thought, 'Clearly she wants us to take her out of here. Clearly she doesn't like being here any more than they like having her.'"

 

In most adoptions, Robinson explains, children are integrated into their adoptive homes slowly, with gradual introductions to the parents and siblings. But for her family, it happened much faster. Two days after they first visited the foster home, the couple took Halle on an outing. Two days after that, they brought her home for an overnight visit. "She had a fat lip and a chunk of her hair was missing," Robinson remembers. "They said another little boy in the home had hit her and pulled her hair out. We thought, 'She doesn't need to go back to this place.'"

It was February 1993. Tania Robinson finally had a daughter.

 

Going out in public is a major ordeal. Halle needs to cling to her mom. The parents know that sooner or later she will totally lose it, but it is totally unpredictable when that will happen. Once she loses control away from home, she is unable to regain it. Doctor's appointments, of which there are many, are a nightmare. Halle is very fearful, and will scream for hours. It usually takes her several days to get back to normal.

--May 1994, Ramsey County service plan

 

It didn't take long for Robinson to figure out that Halle wasn't like other kids. "She started doing just really weird things," Robinson says, closing her eyes and shaking her head. "She would suck on the doorknobs. She'd be shrieking, banging her head, hitting herself.

"Initially I was consumed by figuring out what was wrong with her," Robinson says. "As the diagnoses were coming in, I learned that my efforts weren't going to fix things. There was no amount of love that was going to make any difference. It was hard. I was with this kid 24-7. I was losing my mind."

Halle's behavior grew worse and worse. She couldn't speak or communicate, but she flew into rages. "She'd be screaming, screaming, screaming and beating herself. There was blood everywhere," Robinson says. "I was carting this kid all around, trying to see if anything could be done, and she just kept getting worse and worse and worse." On top of everything else, a doctor told the family that Halle had probably been abused.

Robinson began searching for information on Halle's birth mother. She learned that Halle's mother had been physically abused as a child and lived in a group home. She suffered from epilepsy and severe mental retardation, and she also had limited use of her left hand because of a stroke she'd had as a child. Apparently the mother had left the home for a social event one day and was raped, which is when Halle was conceived. Robinson continued to search for answers, thinking she might glean something that would offer an insight into Halle's condition.

In the fall of 1993, just after the adoption was finalized, the family moved to St. Paul in search of better jobs and living opportunities. Bruce France got a sales job, the boys went to school, and Robinson stayed home with Halle. She spent her days taking the screaming child to see doctors, psychiatrists, and social workers, trying to cull treatment plans and find out what services were available.

Halle's Ramsey County caseworker suggested putting the three-year-old on the waiting list for a program for people with metal retardation and certain other developmental disabilities, such as autism and cerebral palsy. Once they were admitted to the program, known as the MR/RC (Mental Retardation and Related Conditions) Waiver, the family would be allotted state and federal money to help pay for Halle's needs. (Waiver does not refer to a piece of paper; it's an outgrowth of the program's bureaucratic roots.)

The social worker--the first in a long series--warned Robinson that getting on the list wouldn't fix her immediate problem. "He said, 'Maybe by the time she's an adult she'd get the waiver,'" she recalls. Aside from that, all he gave Robinson was a phone number she could call to get diapers for her daughter. "I could have figured that out on my own," Robinson grumbles.

Frustrated, Robinson kept looking for help herself. She took all the information she gathered and meticulously put it into Halle's medical file, which she carried everywhere, like a paper security blanket.

At one point Robinson enlisted a psychologist to come to the house and observe Halle's behavior in order to come up with a plan to help modify her destructive tendencies. Instead, she got a new-age lecture. "She said she didn't believe in medication," Robinson recounts with a chuckle. "She said, 'You can heal any child through love.'"

Robinson tried to get Halle enrolled in the St. Paul Public Schools, where disabled kids are entitled to expensive special services. She called and called but never got any response from the already overtaxed bureaucracy. Eventually she carried Halle to the special-education office. "I put her on the floor and walked out. She's sitting there screaming. I said, 'You won't return my calls. We can't do it.' Two days later she was in school."

 

The family was able to hire a personal-care attendant to work with Halle for a few hours a week, thanks to Medical Assistance, a joint state and federal program that helps the chronically ill pay for services such as hospital and nursing care, home health aides, and convalescent care. And that helped Robinson go to the grocery store, say, or an appointment with another child. But it was a far cry from what they could do with a waiver.

Robinson stopped adding to the file a few years ago. "It was helpful at first. It kept me focused," she muses. "It got to be kind of depressing collecting all this stuff." Most of the time, the file stays perched on a shelf in her office, a painful reminder of those early years. "There was very little about her that was like any other human being," Robinson says. "I can't describe it. It was just really bad. She was so cute, too. And then she'd just start screaming."

Eventually, Robinson adds, "We just stopped doing things as a family. If the boys wanted to do something fun, they'd go with their dad, and I'd stay home with Halle."

In 1996 Robinson moved out of the family's home, and she and France filed for divorce. "Tania and Halle, they just didn't work. She kind of burned out, and it wasn't what she was hoping for," France says. "I went along with the adoption, but I had my doubts. Tania wanted the adoption, and maybe there's more guilt, more responsibility, more upset on her part. I didn't really deal with that aspect."

At first all four children lived with their father, as Robinson started a long grieving process. Eventually, the two younger boys moved in with Robinson and her new husband in Minneapolis. Halle and her oldest brother live with their dad in the Carroll Avenue home.

If they had received help, maybe things would have been different, Robinson says. At the time, though, she was tormented by thoughts that she had failed. "Maybe I'm not trying hard enough, maybe I don't love her, maybe if I'm better she'll get better," she used to think. "But she wasn't getting better, and I was trying harder. I felt really sorry for myself. I was like, this is it, this is my daughter. And I couldn't talk about it with anybody."

 

Further recommendations for Halle would include ongoing therapeutic support and parent guidance for Mr. and Mrs. France. Halle is an extremely difficult child who will require a great deal of patience, nurturing, stimulation, and skill on the part of her parents. It will be crucial to Halle's adjustment that Mr. and Mrs. France have an ongoing resource which can answer their questions and provide them with guidance as they parent this difficult child.

--psychological evaluation of Halle, August 1993

 

Because we live in a free society, isn't it our right--even those of us with disabilities--to live and learn and work in our communities, in our homes, as long as we are able to? That has been the prevailing idea in Minnesota since the mid-Seventies, when an era of de-institutionalization began. Rather than continuing to shut the mentally retarded and people with other severe developmental disabilities up in giant, sterile, hospital-style institutions, public assistance could make it possible for them to live at home.

The government was already paying to put people in institutions, and policymakers thought the money would be better used to pay for services that would help keep people in the community. One of those programs is the one Halle has been waiting for for seven years, the MR/RC. To qualify, an individuals must have an IQ that is less than 70, as well as such behavioral problems as an inability to make decisions, take care of themselves, or interact with others. Once someone receives a waiver, she has it until her condition improves and she doesn't require services, or she moves from the state, or dies.

It's difficult to estimate exactly how many dollars Halle would receive because the figure varies from case to case, depending on the needs of the disabled person. But it can be substantial, anywhere from $2,000 to more than $100,000 a year; the average annual expenditure per person is close to $50,000. Other programs can provide some assistance, but the real advantage of the MR/RC Waiver is its flexibility, according to Anne L. Henry, an attorney with the Minnesota Disability Law Center, a part of the Legal Aid Society of Minneapolis. People can use their funds for the things they need most: in-home family support, equipment, modifications on a home or a vehicle, even a job coach. The cost of the program, more than $400 million in fiscal year 2000, is split between the state--specifically the Minnesota Department of Human Services (DHS)--and the federal government.

 

The state's highest priority for the program has been to get people out of institutions and into the community, says Henry. In the past, the state budgeted funds for 600 new waivers each year: 400 were earmarked for people already living in institutions; the remaining 200 were for people living in the community who needed services. The program has done a good job getting people out of facilities, Henry says, but hasn't kept up with the needs of people who were never institutionalized. The waiting list has simply grown and grown. Right now there are more than 4,500 people across Minnesota waiting to receive the MR/RC Waiver.

At the same time, most families no longer have the option of institutional care, because many of those facilities have been closed. "What that means for families is that the demands on their time are tremendous," says Bob Brick, executive director of the disability-rights organization Arc Minnesota. "People are losing wages, losing jobs; they aren't getting any sleep. It affects their ability to be employed and contribute to our society. Families who are well into retirement are still expected to care for sons and daughters in their 20s and 30s. When do those folks ever get a break for themselves?" Too often, Brick says, families simply fall apart.

Aware of the number of desperate families who weren't being helped, in 1999 the Minnesota Legislature passed what was known as the "Unlock the Waiting List" law. The measure aimed to dramatically reduce or eliminate the backlog by 2003. The state would increase to 700 the number of new slots each year, and the program could keep any funds that went unspent--either because the cost of care decreased or because families with waivers couldn't immediately find people to provide the services they could now pay for. That extra money also was supposed to get more people off the list.

The change was supposed to take effect in July 1999. But, according to Henry, DHS had trouble implementing the new law. The state and county bureaucracies involved couldn't figure out how to get the extra money to new families. Henry says they simply failed to spend all the cash. In addition, some of Minnesota's counties are not home to enough disabled people to use up their budgets, and those unspent funds went back to the state, too.

While some of those unused dollars were earmarked for additional waivers in 2001, not all the money was rolled into the following year's budget. When the Governor's Office set about drawing up the state's next budget (2002-03), the number crunchers noted that the waiver program had a surplus, so they planned to take away $66 million over the course of the next two years, 2002 and 2003. After the governor's budget proposal was announced in January, the legislators who had authored "Unlock the Waiting List" were infuriated. They, along with Henry, set out to track down what hadn't been spent and why. In March, after months of public hearings, lobbying, and comparing different budget charts, the team discovered that an estimated $28 million in state funds was lying around unspent.

"It was incomprehensible to us that there was unused money and people were suffering," Henry says. "People should not have had to wait this long. People are really, really suffering. There is still a backlog."

DHS budget director Wes Kooistra says that the state agency has been trying to spend the money, but there is a lag between when the counties determine how many people can have new waivers and when the money is actually spent. New waivers have to be granted slowly so that the program doesn't go over budget. "We have no way of knowing that immediately," Kooistra says. "It's not a big error in terms of calculations for a big program like this, but it does turn out to be a big dollar amount."

In an attempt to spend the money before it must go back into the state's general coffers, last month DHS told county administrators that they should open up waiver slots to anyone on the waiting list who can begin spending money on services before June 30, when the fiscal year ends.

Unfortunately, that's not as easy as it sounds. For years families on the waiting list hear the repeated refrain that there is no money to help them. But when a family is lucky enough to get a waiver, it often faces continued waits because there aren't enough services. This new delay, says Arc's Brick, is due in part to a workforce shortage. The work is exhausting, while the wages are meager, so it's not surprising that during all those years when there wasn't enough money to even get services, the number of providers dwindled. Consequently, it often takes five or six months to get services up and running once a waiver is issued.

 

"DHS will give the money out, but it's a one-shot deal," Henry says. "It's going to allow people to try. It's a question of making it before the door shuts, before June 30. It's entirely up to the counties. If they don't do it, they have basically failed the people in their counties."

Now, especially because of the increased time pressure, the marked differences in how well the counties administer the program could prove devastating. For example, Henry opines, Hennepin County has worked hard to improve its program, while Ramsey County has not. "People on the waiting list are very disadvantaged if they live in Ramsey County," she declares. "It is very, very sad. Residents are not well served."

Tania Robinson is painfully aware that had she and Bruce France settled in a different county when they moved to Minnesota eight years ago, life might have been different. But at least the new directive from DHS has offered hope where before there was only desperation. Halle's new social worker said she'll put her on a new list of people who need waivers that's being compiled by all of the Ramsey County case managers, Robinson says. By the end of April, a committee is supposed to decide who receives them. The case worker, Robinson says, thinks Halle's long wait will be over, but she can't make any promises. (Contacted for this story, Ramsey County waiver administrators say they are hoping to take full advantage of the last-minute spending spree.)

Regardless of whether Halle gets the waiver that could change her life, Robinson says, the family is still suffering from having paid such a high price to take care of the child alone all these years. "I took her from place to place trying to maximize her options, her opportunities," Robinson says. "I wanted her to be the best she could be. Who knows what she could be?

"The reality is that everyone has the right to live and learn and work and play in their community," she adds. "People say it's not fair, why should I have to pay for your kid? Well, it's not fair for her to walk around with her disability. It's not fair that we have to take care of her the rest of our lives. It's just the way it is. And who said anything about fair, anyway?"

 

There almost certainly will be no magical medical solution and even more precisely defining diagnostic labels such as Hydantoin syndrome or autism will not lead to any specific therapies that will be dramatically more effective than [what] is already being attempted. The parents themselves are now aware that something as simple as changing homes from the previous foster home to the present family does not provide any magical solution either.

--Halle's pediatric neurologist, November 1993

 

It's only a five-minute drive over the Lake Street Bridge to get from Robinson's home on 35th Avenue in Minneapolis to France's house in St. Paul, and there is a great deal of coming and going between the two places. Morgan and Dylan, who live with Robinson, may spend afternoons or evenings with their dad during the week, or they'll watch Halle if no one else is available. On Sundays, France works cleaning office buildings, so Halle may spend the afternoon at her mom's house, though she never spends the night there.

In many ways, it's as if they are still one family, living in two very different households. There is a general disarray in France's Carroll Avenue house. The paint is cracked and peeling, holes in the plaster have been patched with silvery strips of duct tape. There is no furniture in the front living room, just scratched-up wood floors and assorted toys spread around the perimeter. Papers and clothing cover the dining-room table and chairs. There isn't a speck of visible counter space in the kitchen, which is cluttered with pots, pans, dishes, and bottles of prescription medications.

At Robinson's home, the living room is quiet and clean, with glass ornaments gracefully resting in a curio case, velvety overstuffed chairs and antique side tables, and oriental rugs on polished wood floors.

 

The family's chaotic method of coming and going seems to work, for the most part, but everyone appears to continually reside at the precipice. Neither Robinson nor France has any money to speak of. Every penny goes toward taking care of the kids. Forget retirement savings. To sustain the family they have both been forced to take jobs that are flexible. France makes deliveries for the Bibelot Shops, which allows him to be home with Halle if necessary. Robinson often has to miss work at Arc to take care of the kids. The parents, who remain friends and see each other almost every day, split the bills and share the duties of taking the kids to doctor appointments or going to parent-teacher conferences.

Now that Robinson and France are divorced and the kids are split up, it's easier for the family to function. At least now they can all rely on each other to take over when someone needs a break. "It's more natural, more acceptable this way," Robinson says. "All our needs are met and we don't feel as overwhelmed. You figure out how to make it work. There are not a lot of options out there. It's what's best for all the kids."

Perhaps the greatest harm has come to the relationship between mother and daughter. Robinson's wish to have a daughter was all-consuming; against that backdrop the strained relationship is all the more poignant. If the Carroll Avenue house is the epitome of laid-back, disorganized flexibility, Robinson's home is an embodiment of intricate structure, delicate organization. And the homes are effective metaphors for Halle's relationship to each of her parents. In Robinson's home, Halle is quiet, her ready smile more tentative than usual.

Robinson is certainly aware of Halle's nervousness. "I am a very detail-oriented, organized person. Part of what was so difficult for me about taking care of Halle was that she was so unpredictable, so everywhere, so consuming," she says. "Bruce was just able to deal with her a lot better than I was. They do really well together in their very unstructured routine."

Even though Robinson is seeking a compromise--somewhere between chaos and rigidity--that will keep her sane and make Halle more comfortable, it's hard for her to envision caring for Halle full-time again. "What if Bruce can't take care of her anymore? I think about bringing her to take care of here," Robinson whispers, adding her worries about the changes, physical, mental, and hormonal, that Halle may undergo during puberty. "I don't think I could do that. And that's really hard for me to say."

Nonetheless it's clear that Robinson loves her daughter. The ten-year-old longs for flowing tresses, and Robinson recently spent 12 hours one day putting extensions in Halle's coarse hair. Sometimes Halle will follow her mom around, helping make lunch or sorting laundry. Sometimes they'll turn on music and Halle will dance. Her favorite is ABBA, Robinson says. If only a little "Dancing Queen" could piece together their broken bond.

"I love all of my children, all four of my children. I love them differently, because of who they are. With her, it's an overwhelming sense of responsibility," Robinson explains. "I don't have a connection with Halle. She doesn't make sense to me. It's hard to have your hopes and dreams for yourself, and yourself and your child, to have those go away. Not only do they go away, but you're going to have to take care of this person for the rest of your life. I really wanted to have a daughter I can have a relationship with, and that isn't there. But that's me, it's not her.

"I don't think any of us blame her for anything that's happened," she continues. "I wish not that we hadn't adopted her; I wish her life had been different."

 

It appears that you are doing an excellent job with managing Halle's many concerns and demands, but helpful resources for you would be desirable too. As we discussed, Halle's puzzle is indeed made up of many pieces and we and her other health care providers are trying to determine just how many pieces there are to assemble [to] coordinate her treatment most effectively.

--University of Minnesota's Craniofacial Clinic, February 1994

 

Perhaps the most striking aspect of Halle's life is that no one who hasn't lived through it--not friends, not caretakers, not even medical experts--can completely grasp the difficulties she and her family have faced. It can be hard for people to understand why this family had to split itself apart in order to stay whole. Outsiders, especially those who didn't know Halle during her early, tempestuous years, see a girl with little resemblance to the enigma the family brought home in 1993.

 

Carly Kidd is a personal-care assistant who has come to the France home to work with Halle twice a week since August. A 25-year-old college student, she was assigned to Halle by St. David's Child Development and Family Services in Minnetonka, where she was trained to do part-time in-home care. Medical Assistance pays St. David's for the service, and Halle's parents are grateful.

The afternoon routine is always the same. As soon as Halle steps off the school bus from St. Paul's Homecroft Elementary School, she has her usual after-school snack: ramen noodles (there's a case of the packets on the floor in the dining room), string cheese, slices of salami and bologna, and thyroid medicine. Soon it's time for homework. Today the task is spelling words with an "ow" or "or" sound. Kidd goes over a list of words with Halle. She has trouble with some of the sounds and can't seem to make a connection between them. Kidd asks her to use the word "mow" in a sentence, and Halle responds, "Mow is a character on The Simpsons." Chuckling, Kidd explains that that kind of "Moe" is spelled differently. Halle doesn't get the joke.

Next Kidd suggests a bath. Halle doesn't like the idea. Her gravelly voice rises in frustration, reminiscent, Kidd says, of a tantrum her charge once threw in the local library. Kidd remains firm. They settle on a shower, and Kidd helps Halle undress, wash, towel off, slather on lotion, and get dressed in a sweatshirt and pants with an elastic waist (zippers and buttons are still a little too hard for the girl to maneuver).

Kidd sees Halle through hopeful eyes. It's hard to tell whether they're colored by inexperience or simple optimism. She sees a little girl who is not very different from other ten-year-olds. Because she's the family's youngest child, the only girl, and adopted, she's been very sheltered, Kidd opines. "I came in expecting someone completely nonfunctional. But her strengths are so numbered. Not until her dad, in particular, lets her learn more things and have more freedoms will she really be able to learn the skills she needs. I think she'll be completely functioning. I see her having boyfriends, getting married. She's definitely functioning enough to have children."

That notion evokes an uncomfortable shiver from Halle's father, who is noticeably distressed by the idea of Halle maturing sexually. From her mother, the idea garners a guffaw. The past eight years have blurred together into a pool of shared, painful memories for these parents. They have struggled with their daughter, battling to get her help, battling their own frustration, and finally learning to live without the services she is eligible for but can't have. Today Halle has come farther than they ever expected. But their experience--clocked in years, not hours--tells them that Halle won't be able to take care of herself, let alone a child.

The idea raises a nagging question: What will happen to Halle when she reaches adulthood? While it's difficult to imagine putting her in a group home--assuming there's a decent one available--it's even harder to envision taking care of her at home when she has reached her 20s or 30s. And so they wait, hoping they'll get the waiver. Until then, they'll keep doing what they've been doing. They'll continue to cope.

They've heard it all. All she needs is a good home and she'll blossom. You can heal any child through love. Just rock her and hold her and tell her you love her.

"Everybody's got real good advice to give," Tania Robinson says, a hint of defiance in her voice. "After all these years, it's like, Save it. Just save it."


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