Children with Down syndrome increasingly sought for adoption

Sunday, February 5, 2006

KANSAS CITY, Mo. -- For Diane and David Petersohn, seven was not enough.

One of their seven children has Down syndrome, and when the couple from Liberty, Mo., decided to adopt an eighth child, they wanted another one with the syndrome.

The Petersohns placed their names on national lists of people seeking to adopt children with Down syndrome.

They waited. And waited.

After nearly three years, the Petersohns turned to a private agency that facilitates international adoptions. Today, they are raising money and completing paperwork needed to adopt a 6-month-old boy from Ecuador who has the syndrome, a type of retardation caused by a genetic malfunction.

Most who seek to adopt Down Syndrome children have had a family member, friend or acquaintance with the disorder, or work with them in medical or school professions.

"Out of all the special needs children can have, many think Down syndrome is the more manageable," said Rachel Crews, a social worker with the Special Additions adoption agency in Stillwell, Kan. "People think they are just great kids, people feel like they are very lovable."

Changing attitudes toward people with disabilities, efforts to include them in everyday life and improved medical treatments also have helped, advocates say.

"Society as a whole is much more accepting," said David Tolleson, executive director of the National Down Syndrome Congress in Atlanta. "You are much more likely today to see people with disabilities in the media, places of worship, schools.

"Whereas in a prior generation, mothers were told when they had a baby with Down syndrome or another disability, put the child in an institution and forget about them."

That's what happened 34 years ago to Martha, whose single mother gave her up for adoption. When she was diagnosed with Down syndrome, she was deemed unadoptable and placed in a group home.

When Martha turned 4, Robin Steele and her husband met her and fell in love immediately.

"We just knew we wanted to make Martha part of our family," Steele said.

Martha's adoption also spurred the Steeles to find a way to connect families like theirs with children with Down syndrome whose parents could not raise them.

So, 23 years ago, they started the Adoption Awareness Program in conjunction with the Down Syndrome Association of Cincinnati. Through the program, Steele connects people who want a child with Down syndrome with birth mothers or adoption agencies.

In the first year, she helped find homes for three children with Down syndrome. Now, Steele works with three to five situations a week, she said, and has a waiting list of 150.

Amy Allison, executive director of the Down Syndrome Guild of Greater Kansas City, said people with the syndrome are generally a joy.

"People with Down syndrome are pure in heart and spirit," Allison said. "They keep you grounded. Every parent wants their child to reach milestones, but when a child with special needs reaches a milestone, there's that much more to celebrate."

Allison said the organization does not monitor trends, but "there are easily more people contacting us interested in adoption than we have ever seen before."

Adoption advocates say they stress to prospective parents that all people with the syndrome are not the same.

"Just because you have Down syndrome, that doesn't mean you're going to have a cookie cutter personality and be the stereotypical huggy, lovey kid," Steele said. "There are certainly very positive aspects. But there are also the challenges you have with any kid."

Health issues are abundant. Nearly half of those with Down syndrome will have some heart defect and about one-third will develop thyroid problems. About 1 percent develop leukemia, and nearly all will have some delay in motor and speech development. Other potential problems include intestinal or spine malformations and hearing difficulties. And most men with Down syndrome are infertile.

Better medical treatments and earlier intervention have increased the life expectancy of people with the syndrome from about 6 years to the 50s and 60s today.

But the potential health problems and concerns about life expectancy caused some of the Petersohns' friends and family to question their wisdom when they adopted Darcie, who is now 5.

Darcie has had six minor surgeries on her eyes, ears and nose, but did not have heart problems and is close to the typical development stages.

While saying Darcie is so outgoing "she has made people smile who look like they don't know how," Diane Petersohn said that is partly because her daughter has no sense of safe boundaries.

"She runs off quite a bit, and that is scary for a mother," she said. "It is difficult sometimes. But the good far outweighs the difficult parts."

That's why they're working to bring the boy home from Ecuador.

"I never thought (before Darcie) that I would be a mom of a child with special needs," she said. "We prayed God had a baby girl out there for us. It seemed to be her, and it has been a true, true blessing."

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