Down Syndrome Orphans Find the Reece’s Rainbow Connection
American families are being enriched through the adoption of children who are neglected in their native countries.
BY PETER JESSERER SMITH
| Posted 2/20/13 at 11:50 AM
GAITHERSBURG, Md. — Meg and Ryan Stout were not looking to adopt a baby with Down syndrome. But, after years of infertility and prayer, they found their son Paul with the help and financial support of Reece’s Rainbow.
“We’re faithful Catholics, and we felt like God was calling us to adopt one of these children from Ukraine,” Meg Stout said. “International adoption was not something previously on our radar, nor was adopting a child with special needs, but we were confident this was God's will, and so we moved forward.”
The Ryans discovered Paul, now 18 months, in February 2012 through Reece’s Rainbow. The nonprofit U.S.-based adoption apostolate raises funds to connect families like the Stouts with orphaned children with Down syndrome and special needs in 26 foreign countries.
The Stouts spent six months going through the process of adopting Paul from Ukraine and brought him home in November. Meg spoke with the Register from a hospital in Salt Lake City, where they are arranging for Paul to have surgery to fix heart defects — a medical challenge that many babies with Down syndrome face.
“He’s just the sweetest little boy,” Stout said. “ At the orphanage he didn’t react to much, didn’t show interest in people or toys. But now he’s home; he’s rolling around, exploring our house, the toys and giggling and babbling.”
The Stouts’ story is just one of the 900 (and counting) families that Reece’s Rainbow has helped over the past six years. The 501(c)3 charity’s website features hundreds of children with special needs in need of adoption and the stories of families in all stages of the adoption process.
To make adoption stories like the Stouts' possible, the nonprofit raised more than $4.2 million in grants by fiscal year 2011, the latest data on record filed with the Internal Revenue Service. That same year, when 196 children with special needs were adopted, Reece’s Rainbow paid out $1.75 million in grants to families.
How It Started
The Reece’s Rainbow story began in 2006, when the founder and executive director, Andrea Roberts, discovered that children with Down syndrome overseas had none of the care and chance to thrive that her 10-year-old son Reece and other kids with Down syndrome in the United States enjoy.
“They have no hope, no real care and no real future,” Roberts said. “I just decided that was not okay.”
Children with Down syndrome in the United States have access to medical care, educational programs and therapy that can help them grow up, find fulfilling jobs and inclusion in American society. American actor and folk singer Chris Burke and actress Lauren Potter from the hit show Glee, both have Down syndrome and have achieved fame in American pop culture.
But overseas, orphans with Down syndrome face malnourishment, neglect and lack of lifesaving medical care. Roberts said she was shocked to learn that some 10-year-olds were so severely stunted in growth they wore infant clothing. Many are committed to mental institutions by 5 years old, Roberts said, the age when children with Down syndrome in the U.S. might be entering kindergarten.
The tragic irony, however, is that the very lack of medical technology in these countries gives babies with Down syndrome the best chance to be born, while the medical technology in the United States and other first-world countries that gives children with Down syndrome the best chance to thrive also contributes to the more than 90% abortion rate of these unborn children.
Roberts, a Christian mother of two, said she took to the Internet in 2006 determined to make a difference and taught herself how to create a website. Reece’s Rainbow that year connected its first two families with orphans with Down syndrome.
“We’re not an adoption agency,” Roberts explained. “We’re really just a connecting point for families wanting to adopt these special-needs kids.”
Finding the Kids
Roberts and her team of volunteers search state adoption databases, such as Russia’s Usynovite.ru, and visually identify the photolisted children with Down syndrome. While many countries restrict adoption agencies from photolisting, Roberts said it’s something their charity can do, as it is neither an agency nor does it make any money from the actual adoption process.
Besides children with Down’s, other orphans with spina bifida, HIV and many other conditions are also listed. Roberts and her team place a photo of the child with a little biographical information on the website and a button to help visitors donate to that child’s adoption fund. Roberts said the photos help both donors and prospective adoptive parents see the child they’re helping.
“You don’t have to adopt to make a difference, but everybody can give, and every penny adds up,” she said.
International adoptions can cost families anywhere up to $25,000-$30,000, Roberts said. Ninety percent of donations to children waiting for a family to adopt them go specifically toward that child’s adoption. Ten percent goes to the Voice of Hope fund that pays for Reece’s Rainbow’s operating costs. Once a child enters the adoption process, Roberts said, 100% of donations go toward that child’s adoption fund. Roberts said the risk of fraud is low because they hold the money specifically for that child until foreign officials clear a qualified family for adoption.
According to fiscal year 2011 tax data, Reece’s Rainbow spends less than 10% of revenue on administrative costs, and staff salaries total $66,000 — Roberts herself made $37,500 as executive director.
Social networks have rapidly expanded Reece’s Rainbow’s education and fundraising efforts. Many donors and prospective adoptive parents find out about Reece’s Rainbow through Facebook, and celebrities like Patricia Heaton and Lee Ann Rimes haven taken to Twitter to encourage their followers to donate to the charity.
“These children are wanted,” Roberts said. “But it costs a lot to adopt internationally.”
Meeting the Challenge
Sarah Basile and her husband, Shawn, adopted three girls with Down syndrome from Ukraine through Reece’s Rainbow between 2010-2013. Reece’s Rainbow grants helped defray $75,000 in total adoption costs.
“One of the challenges we faced was convincing others that this crazy idea was a good one,” Basile said.
Basile is now Reece’s Rainbow’s new liaison for families. She told the Register that Zoya Faith, 4, now goes to preschool. Mila Hope, 22 months, is “happy, funny and loves life,” but was “barely hanging on” when they adopted her at 7 months. She needed multiple heart and airway surgeries. Sophia Joy, 15 months, is a “ball of energy … and finally beginning to realize that it feels good to be loved and provided for.”
Basile said that adopting is not all “sunshine and roses.” Each of her daughters came home with emotional and medical challenges.
“We are so thankful we listened to God’s call,” Basile said. “Our children have blessed us way more than we have blessed them.”
Rachel Brown, a post-adoption counselor for Reece’s Rainbow and adoptive mother to a child with Down syndrome, said that special-needs adoption is not for everyone.
“It’s not enough to want to rescue a child from the orphanage,” Brown said. “When you adopt, you are going to parent the child for a lifetime.”
Brown said some adoptive parents struggle with high expectations they set for the family and child adjusting. But like all overseas adoptions, adopting a child with Down syndrome involves the challenge of cultural differences, including different ways a child was raised or disciplined, and overcoming orphanage behaviors.
“No one pays attention to them in the orphanage, so kids learn to count on themselves,” Brown said. “They are not like your typical American biological child that has been cared for and loved their whole life.”
While the typical American child gets fed, changed, pampered and attention in response to his cries, orphans in these countries learn crying is useless, Brown said. They are mostly kept in their cribs and only fed and changed on a set schedule by staff. Parents have to help their newly adopted child unlearn coping behaviors, such as head-banging, binge-eating, resisting comfort, extreme sensitivity and trust issues.
Adopted children with Down syndrome also need additional medical care (often including heart and orthopedic surgeries) and physical, speech and occupational therapies they need to have a healthy life, Brown said. They also may be developmentally delayed in verbal and social areas. Brown connects parents with local counselors, therapists and physicians and with the Reece’s Rainbow parent-support networks on Facebook and Yahoo Groups to meet these needs.
Brown said the post-adoption adjustment is “a short period of life” and said that “99%” of Reece’s Rainbow families make the transition successfully.
“You really have to have the desire first in your heart to do this,” Brown said. “You have to be very patient, organized and value the small successes.”
Roberts said Reece’s Rainbow does its best to partner with highly respected adoption agencies, facilitators and missionary groups who can help families adopt children with special needs.
Reece’s Rainbow families have experienced the adoption process to last between six months and 2 years, but the most reliable program is in Ukraine, she said.
“We call it a paper pregnancy,” she said, explaining it generally takes seven to eight months.
Serge Zevlever, a Ukrainian-born American citizen, runs the associate adoption team that has placed 480 children with special needs with American families.
“Everything needs to be done legally,” Zevlever said. “Our goal is to make parents have a successful adoption and avoid mistakes that break Ukrainian law,” such as incomplete paperwork and failure to get proper court authorizations.
Zevlever, an adoption consultant with 17 years experience, said he provides adoptive parents with housing, court appointments and makes sure all the documents are correctly prepared. Part of the challenge, he said, is keeping families, social workers and U.S. State Department officials immediately informed of any changes in Ukraine’s adoption law that would affect the adoption process.
Reece’s Rainbow tries to be very careful with the adoption agencies they deal with. Roberts said they cut ties with four agencies in the past six years over bad experiences. She added they refuse to work with any agency in Africa, except one highly respected group in Ghana, because of the prevalence of human trafficking.
The Human Potential
Reece’s Rainbow also seeks to educate families overseas about the potential of children with Down syndrome. Roberts said they have 500 posters hanging in state adoption departments, and she hopes that their efforts can produce a change and help teach people how to embrace children with special needs as equals in society.
“We want to plant seeds of knowledge and truth with each adoption,” Roberts said.
One seed planted is in Zevlever himself. He grew up in the atheism of Soviet-era Ukraine before leaving for America almost 25 years ago. But he said the past four years of working with Reece’s Rainbow families made him a “totally different person” and renewed his Orthodox Christian faith.
“It’s changed my life and changed my mind. I have so much joy and peace from this,” he said.
The father of three said he takes his 12-year-old son with him on visits to the facility where Ukraine sends orphans with special needs aged over 5. They bring something to help brighten the children’s lives, and Zevlever said he sees it means so much to them.
“Even the children who can’t walk or talk — sometimes the eyes say much more than speech could.”
For Meg and Ryan Stout, being a Reece’s Rainbow family started with a click on Facebook that opened up their hearts to this new life.
“We knew that Paul needed a family too, and we were willing to be that family,” Meg said. “Sometimes it is just that simple.”
Register correspondent Peter Jesserer Smith writes from Rochester, New York.
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