By Michael Alison Chandler
Washington Post Staff Writer
Sunday, November 9, 2008
Jonny and Madeleine, the eighth and ninth children in the Curtis family, were born 54 weeks apart but grew up in many ways like twins. Best friends from the beginning, they learned to walk and sound out words together. But Madeleine's development soon outpaced her older brother's.
Looking ahead, Barbara and Tripp Curtis worried that Jonny, who has Down syndrome, would be alone as his siblings grew up and left home. And so they adopted Jesse, Daniel and, finally, Justin. All three have Down syndrome.
Now the four brothers, ages 8 to 16, share a bedroom decorated with posters of SpongeBob SquarePants and a framed picture of Jesus in their sprawling Loudoun County house. They also share a love of the Beatles, the Everly Brothers and Special Olympics basketball.
For many parents, a diagnosis of Down syndrome can be overwhelming as they face the likelihood that the child will struggle to live independently and require intensive medical, financial and social support. Most prenatal diagnoses of Down syndrome lead to abortion.
Yet almost 200 families are on a waiting list to adopt a child with Down syndrome in the United States. Others are seeking to adopt such children overseas. Many of those interested in adoption, such as the Curtises, have a child with the genetic condition; some are special-education teachers or motivated by religious beliefs or idealism.
Last month, President Bush signed into law a bill meant to help families who confront questions about Down syndrome or other disabilities. It promotes initiatives to give new or expectant parents up-to-date information about the conditions, as well as referrals to support services. It also authorizes the government to help create a national registry to connect birth parents with people who want to adopt a child with Down syndrome.
In 2005, Brian Skotko, a resident physician at Children's Hospital Boston, surveyed more than 1,000 mothers of children with Down syndrome. He found that information mothers got from doctors was often "incomplete, inaccurate or offensive," he said. "Rarely was the option of adoption mentioned" to those diagnosed prenatally, he said.
The closest thing to a national Down syndrome adoption registry is managed by Robin Steele, a mother of 12, including four adopted children with the disability. She works from her Cincinnati home, sharing an office with a 13-month-old foster daughter with shaken baby syndrome.
Her oldest daughter, now 37, was put in a group home as a toddler under the assumption that "she would not be adoptable" because of Down syndrome. Steele adopted the girl and later helped hundreds of other families do the same. In 1983, she helped arrange three adoptions; last year, she was involved in more than 100.
An Atlanta mother, Andrea Roberts, has helped arrange more than 100 international adoptions in two years. Her Web site, http://reecesrainbow.com, focuses on children with Down syndrome, listing page after page of toddlers from Serbia, Ukraine and other countries where children with mental disabilities are often put in orphanages or mental hospitals.
"What a precious, lively, glowing with happiness little boy! Andrey is facing institutionalization very soon," reads the profile of a 3-year-old boy with Down syndrome who needs help for a heart condition. "He will bring the greatest joy to any family who adopts him!"
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The Curtises, Barbara, 60, and Tripp, 54, attribute their desire for such a large family, in part, to their own unhappy childhoods. Barbara grew up without a father, and Tripp's father left when he was 12. Both came of age in the 1970s counterculture in Northern California.
Barbara had two daughters, Samantha Sunshine and Jasmine Moonbeam, before she met Tripp in 1982 at an Alcoholics Anonymous meeting.
Two months after their first date, she learned she was pregnant. They decided to get married and have the baby. The couple bought a house in Marin County, started a tree repair business and, as Barbara described it, "surrendered" to their family, focusing on good parenting as a way to heal past missteps or misfortunes.
"We made a vow to this universal God that we would accept all the children that he-she-it would provide for us," Barbara said.
Over time, their spiritual and political views evolved into a conservative Christianity. Their business grew. So did their family.
In 1992, Jonny was born. In the delivery room, the mother recalled, the doctor put a hand on her shoulder, and she understood something was different about her son. "He has Down syndrome, right?" she asked.
"It's okay," she remembers saying and believing. She said she was filled with expectation and excitement about the changes he would bring to their family.
Tripp's voice still cracks when he recalls a line of poetry the couple chose for Jonny's birth announcement before knowing about the disability: "God's gifts put man's best dreams to shame."
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Mark Li and Carol Lai, a Taiwanese couple in the United States on temporary visas, were stunned when they learned in 2000 that their firstborn had Down syndrome.
They knew little about the disability and could not imagine bringing him to Taiwan, where they believed social services to be scarce and stigma powerful. "Frankly, we were pretty scared," Li said.
They were impressed by the health care their son was receiving and the inclusive policies in American schools. "In Taiwan, a lot of parents keep kids with disabilities at home. They don't want to show them to the public," Li said. "Here you see them in every public school."
The couple began looking for a family to adopt Justin, whom they sometimes referred to by a Chinese nickname that means "light." They saw a profile for the Curtis family through an adoption service and were drawn to Barbara's background in Montessori education and the family's religious beliefs.
By then, the Curtises had adopted Jesse, who was placed in foster care at birth, and Daniel, who was born to a couple that considered abortion but could not agree on it.
When Catholic Charities called to tell her about Justin, Barbara initially hesitated. She was 52 and had four children younger than 9, three with disabilities. But she agreed to meet the Lis.
Now, the youngest member of the Curtis family is an affectionate 8-year-old who wears stylish size 6 bluejeans and wire-rim glasses.
Li and Lai visited Justin last month with their daughters, ages 5 and 7. Thanks to an open adoption agreement, they have made the trip from Taiwan several times, first to California and then to Bluemont in western Loudoun.
At a gleaming oak table set for 10, the Li family ate beef stroganoff and broccoli and drank milk with several members of the Curtis family. Barbara updated the visitors on Justin's progress. "He is playing soccer," she told them. "He is learning to read and to count to 100."
"To 100, really?" Li said, impressed.
After dinner, Jesse, the shyest of the brothers, retreated to one corner of the family room to flip through a picture book, while Jonny, known in the family as "The Mayor" for his larger-than-life charisma, entertained the guests. In one moment, he was an old man hobbling across the dining room. In another, he was a swaggering fan at a high school football game, where he volunteers in a Viking costume as the mascot.
Justin played Chutes and Ladders on the floor with the girls and then went upstairs to click on his Everly Brothers CD. He tapped along on a yellow-and-blue plastic drum, while Daniel sang a version of the song full of melody but few words, and danced in his pajamas. Step by step he moved happily to the music and grabbed Li's hands to dance.
Li said the visits are helpful.
"It gives me peace of mind to know Justin is doing pretty well," Li said. "He is learning. He is growing. It helps me sleep better at night."
Coming soon: As people with Down syndrome live longer, caring for them is becoming more complex.