The Adoption
Option
FOUR TRUE STORIES OF PARENTS WHO HAVE EXPERIENCED THE UPS AND DOWNS OF ADOPTION AND COME OUT SMILING

By Ben Mattlin

A couple walks into an adoption center and announces they want to adopt a little boy who uses a wheelchair. They already have four kids without disabilities, so they know all about parenting. “Four kids!” says the adoption adviser. “Is your house big enough for a fifth child?”

      “Oh yes,” the mom says proudly. “It’s three stories!”

      Trying to be polite, the adviser asks what the family likes to do on vacations. “The usual,” the dad answers. “Camping, hiking in the woods ...”

      “None of this sounds very accessible,” says the exasperated adviser. “Why on earth do you want a boy who uses a wheelchair?”

      In unison, the couple responds, “To save him, of course.”

      It sounds like a joke, but according to Sandy Roberts, it’s a true story. Many parents seek to adopt a child with a disability without truly understanding what’s involved. Others, however, may know a great deal about disabilities but find themselves thwarted by an adoption system that’s riddled with out-of-date assumptions and prejudices. “There are still a lot of agencies that won’t even try to place kids with special needs,” says Roberts, cofounder of Kids to Adopt, an adoption agency in Vancouver, Wash., that specializes in disability placements. “Their attitude is, ‘Who wouldn’t prefer a healthy child?’”

      Whatever your understanding of disabilities, adopting a child with one is never easy. If you thought parenting a kid on wheels could be hard, consider the added hassle of first having to navigate the arcane adoption system. Yet with persistence, patience and a degree of luck, many do succeed and have no regrets. Their stories may sound like high drama, full of tears, anger and profound joy, but much can be learned from their examples.

The Heider Family

      In the early 1990s Linn and Jim Heider of Green Bay, Wis., were at a crossroads. The Heiders already had three children between the ages of 8 and 15. Then a photo in a local newspaper gave Linn an idea that would change their lives forever. It showed a young brother and sister who needed a home; the boy had a cognitive impairment. Could they — should they — adopt a child with a disability?

      “We had to decide if we wanted to add to our family,” Linn recalls. “We wanted to give love and a family to a child who didn’t have either, to share all we’d been blessed with,” she explains. But at first Linn and Jim were “discouraged from choosing these specific siblings” by Wisconsin state officials, she says. The couple considered a nondisabled child. Linn’s reaction: “Been there, done that.” They proceeded with the necessary paperwork for adopting the brother and sister ... and waited and waited.

      One day another newspaper item caught Linn’s eye. It was a story about a nun who volunteered at refugee camps during the war in Croatia. There were many children who needed a safe home far away. She got in touch with the nun, Sister Pauline, and soon Linn and Jim underwent the required home-study process whereby prospective adoptive parents are educated and screened. Again, months passed. Finally Sister Pauline phoned and asked if they would be interested in an orphan with no arms or legs. “We said yes, sight unseen,” says Linn. Three weeks later they received pictures of the infant “and it was love at first sight,” she adds.

      The whole family was fingerprinted, subjected to physical exams, asked for proof of income and proof of insurance. “We even had to send personal letters to the Croatian social services department and pay a fee to the state of Wisconsin,” explains Linn, to provide for the boy’s well-being if the Heiders later changed their minds about parenting him. “It was pretty involved, but we just knew it was meant to be.”

      Even before the baby arrived at their home, they named him Jonathan and took pictures of him to specialists to find out what medical treatments or special accommodations he might need. A school psychologist, Jim had some prior knowledge of kids with disabilities — especially learning disabilities — but Linn had none. She figured nothing was certain in parenting anyway, and she would cope with situations as they arose.

“Domestic adoption of kids with special needs can be almost impossible. Internationally, it’s easier and faster.”

      — Sandy Roberts

      Six months after the phone call from Sister Pauline and 2 1/2 years after their first adoption attempt, the Heiders flew to Croatia to get Jonathan, then 15 months old. Whatever fears they felt were soon forgotten.

      As hard and slow as the process was, adopting from Croatia proved easier and faster than trying to adopt locally. That’s a theme echoed by many adoptive parents of kids on wheels. Yet the Heiders’ story doesn’t end there. In 1997, three years after they received Jonathan, they tried adopting a second disabled child from Croatia. Before the paperwork was completed, they heard about an unborn baby in their hometown of Green Bay who was diagnosed in utero with a disability similar to Jonathan’s and was being put up for adoption. Sometimes local adoptions work with surprising speed. “We were lucky enough to bring Brennan home from the hospital at two days old!” says Linn.

      Jonathan and Brennan, now 14 and 9, respectively, still don’t have a definite diagnosis, but the Heiders don’t care. Their arms and legs are short, they have no hands and their feet don’t fit regular shoes. Jonathan sometimes wears prosthetic legs and uses a walker; Brennan has orthotics to support his lower limbs. Both boys use wheelchairs about half the time. They can wash, dress and eat by themselves; they write, swim and enjoy playing with their Game Boys. “At first they appear to be so helpless,” their mother acknowledges, “but the opposite is true. The boys can do just about everything they need or want.”

The Heer Family

      While the Heiders specifically set out to adopt children with disabilities, many other families aren’t aware that their adopted kids have disabilities until some time has passed. In the small town of Fishers, Ind., Cheryl Heer filled out an adoption form more than 10 years ago that asked her to check off what sort of children she’d accept. She and her husband, who already had two boys who aren’t disabled, were open to just about anything. Still, they weren’t prepared for what they saw on their trip to an orphanage in China.

      Babies were kept in cribs and mostly neglected. Most didn’t look well. The 6- month-old girl they adopted and named Alexis — Lexie for short — was thin and

sickly, but so were many of the others. “If the caregivers at the orphanage knew she had a disability, they didn’t let us know,” Cheryl reflects.

      When the Heers returned to Indiana with their new baby, the local TV station was at the airport to greet them. “Everybody sort of knew about her story early on,” says Cheryl. Baby Lexie was promptly taken to the local children’s hospital for tests. With physical therapy she got stronger but not as fast as other babies that came back with the same group. After six months Lexie was diagnosed with spinal muscular atrophy (SMA), a progressive neuromuscular weakness. She wasn’t going to get any stronger and might not live much longer. The town that had shared in the joy of her homecoming grieved together at the dire prognosis. “We had a lot of support from family, neighbors and our church,” says Cheryl.

      Now that Lexie is 10, doing well at school and living a normal, healthy life, those memories almost seem funny. She’s surpassed her original doctors’ expectations, and the SMA has slowed its progress or even stabilized. “Everybody now realizes that she’s a gift. There’s so much more to her beyond just being in a wheelchair,” Cheryl says. The Heers did have to move from their two-story house to a more accessible place, and until Lexie was in third grade her family had to fend off school officials who assumed she had cognitive disabilities along with her physical impairments. “When she started getting straight As, they began to figure out that all she needed was more orthopedic assistance, not special tutoring,” says her mom. Having a child with a disability has been a learning experience for her, she says.

      Recently, Lexie has become active in power-wheelchair soccer. Now that she’s fully integrated at school, this adaptive sport gives Lexie not only an outlet for her athletic impulses but a new social circle of other kids who use wheelchairs. This has proved a terrific resource for her parents as well. “All the moms and dads sit around and talk about wheelchair lifts and other solutions we’ve worked out. We support each other,” says Cheryl. “It’s great for Lexie’s brothers, too. We don’t stick out there as the strange family.”

The Jarrow Family

      Jane Jarrow of Columbus, Ohio, was a single and childless professional who went on a business trip to Vietnam to advise its government on how to support kids with disabilities. That was in 1993, when diplomatic relations with the Asian nation were more strained than they are today. At the end of her trip Jarrow — a former speech therapist who became a private consultant on disability issues for colleges and universities — visited an orphanage for children with disabilities. There she saw Cottie. Then 2 years old, Cottie was “sitting by herself in a high chair against the wall,” Jarrow recalls. “I walked over and talked to her. Nine months later I went back and brought her home.”

      Jarrow had considered adoption before and not gone forward, but something about Cottie gave her the necessary motivation. At the time formal relations between the United States and Vietnam had not yet been fully restored and there were no adoption agencies or regulations in place, so Jarrow had to broker her adoption directly with the Vietnamese government.

      She guessed Cottie had cerebral palsy but wasn’t cognitively impaired. Her assessments were later confirmed. Being an expert on disability issues, however, was of limited use to her as a new parent. Early on, Jarrow diligently listened to the recommendations of physical, occupational and speech therapists — all the things she should do to help Cottie. “Because I’m a professional in this field, I understood their suggestions and knew they were valid,” she says. But I came home and cried for two days because I knew I couldn’t do everything.” Then a close friend told her to stop thinking like a professional and act like a mother. “She said, ‘Don’t let yourself be sucked into trying to be Cottie’s therapist as well.’ It was the best advice I ever got.”

“Cottie is used to being around people who see life with a disability as natural. She knows it’s OK to be disabled.”

      — Jane Jarrow

      Now 16, Cottie uses a wheelchair, communicates primarily in sign language and does well in school. She has selfesteem to spare, it seems. Perhaps because of her mother’s line of work, she has known many adults and other children who are completely comfortable with and accepting of disabilities. “She’s used to being around people who have disabilities and/or see life with a disability as a natural part of things. She knows it’s OK to be disabled,” her mother says.

      Jarrow is aware that for Cottie to go to college and become an independent adult, she’s going to have to acquire more life skills. She must be taught to be a selfadvocate, to manage her own personalcare assistants and generally take care of her own needs. As a professional who deals with disability issues on a daily basis, Jarrow has handled most of those tasks for her daughter; now she faces the challenge of empowering Cottie to take on those responsibilities herself. Still, she believes that adoptive moms of children with disabilities have one significant advantage over many of their biological counterparts. They feel no irrational guilt over their children’s disabilities as birth mothers often do. “In a sense it’s easier to adopt a child with a disability than to bear one.”

The Roberts Family

      Sandy Roberts, of Kids to Adopt, is the mother of four children — three adopted, one biological. Like three of her kids, she uses a wheelchair. She was born with osteogenesis imperfecta (OI) and is just 4 feet 3 inches tall. “When we first started to look into adoption, we couldn’t find any social workers that would work with us,” she remembers. She and her husband, Dan, didn’t have any children yet, and she is convinced their parenting skills were doubted. So they had their first child, Steven, biologically. He, too, was born with OI and uses a wheelchair occasionally. He is now 11.

      When Steven was 2 Sandy and Dan adopted a second child. “Once we were actually parents, we had an easier time finding a social worker,” says Sandy. Their new social worker helped them find Kyle, a 14-month-old boy from Russia who does not have a disability. Kyle, now 10, came home with them in September 1997. Two months later a friend e-mailed about a 9- year-old Russian girl with OI who was up for adoption. “She was in an awful situation — a mental institution in Russia where she was not getting adequate care. She needed to get out, and who better than us to take her?” recounts Sandy. They adopted Nadia that November.

      For four years the Roberts household remained unchanged. Dan and Sandy started working at an adoption agency. One day an unborn child who had been diagnosed in utero with a prenatal stroke was put up for adoption. The extent of his disability was unclear, and no one wanted him. So Sandy and Dan updated their home-study information and applied for the unborn boy themselves. Less than a week later they brought home the newborn baby and named him Austin.

      Now 5, Austin is legally blind and has difficulty walking. He used a wheelchair full time until he was 3 1/2, when he learned to walk short distances independently; he still uses a chair for longer expeditions. Slightly developmentally delayed, he’s been talking for the past year.

      Sandy has received flak from distant relatives — not about choosing kids with disabilities but about seeking international adoptions instead of taking American kids. “Domestic adoption of kids with special needs can be almost impossible,” she says. In some states, prospective parents must go before a committee with two other families who want to adopt the same disabled child. It can take months for adoption agencies to find three families interested in the same kid, and then two of them are inevitably disappointed. “It’s not easy to get these kids out of foster care. But internationally, it’s easier and faster. Also, when you adopt disabled children from Eastern Europe you know you’re giving them a chance they would never have otherwise,” she says.

      In Russia and Eastern Europe, unwanted kids with physical disabilities are dumped into substandard mental institutions, Sandy contends. She knows firsthand. She’s visited many of these institutions and seen unspeakable neglect and abuse.

      She and Dan got so disgusted with the slow, prejudiced adoption system in this country that they started their own agency, Kids to Adopt. Through it they hope not only to help local families with their disability-adoption issues but to get as many of these disabled and abandoned Russian and Eastern European kids out as possible. “They don’t know, can’t really believe, how full and normal life can be for people with disabilities,” says Sandy.

      Happy Ending

      When couples come to the Roberts’ agency and ask about adopting a child in a wheelchair, Sandy frequently starts by educating them about what’s involved. That’s what the three-story house who likes hiking. Eventually the family realized that adopting a boy in a wheelchair probably wasn’t a good fit. The parents still wanted to help kids with disabilities, though, so they hosted a fundraiser and ultimately bestowed a $5,000 grant to aid other families with adoption fees. The grant helped a more appropriate family adopt the boy they originally had their eye on, and then the original family adopted an older child who doesn’t have a physical disability. “It’s interesting sometimes how things work out,” Sandy says.

Resources

• Kids to Adopt: 360/695-1704; www.kidstoadopt.org

• A Child’s Embrace: 360/539-8443; www.achildsembrace.org

• Adopting Children with Special Needs: www.specialneeds. adoption.com

• Child Welfare Information Gateway: www.childwelfare.gov/adoption/index.cfm