KANSAS CITY, Mo. - Diane and David Petersohn of Liberty, Mo., want to adopt a baby.
They don't care about eye color or hair color. They don't care about race. They would prefer a little girl, but if a boy comes along ... fine.
Their one condition is the same as that of an increasing number of parents: They want a baby with Down syndrome.
"Talk about the prayer of my heart," said the stay-at-home mom, 36. "That would be a dream."
These days it may also be a dream deferred. As part of what is surely a sign of changing attitudes about Down syndrome and its medical realities, parents now asking to adopt children with the chromosomal disorder are being told, get in line, there's a waiting list.
"A baby with Down syndrome was once thought to be unadoptable," said Gloria Hochman, director of the Philadelphia-based National Adoption Center. "Now people are eager."
In Stilwell, Kan., the Special Additions adoption agency, which facilitates overseas adoptions and domestic adoptions of children with special needs, said that whenever the agency is presented with a child with Down syndrome, parents practically compete to adopt.
"I was working on trying to place a little baby in the last couple weeks," said the agency's social work supervisor, Katie Sharp. "I have had 10 to 15 families that want the baby."
Hopeful parents who want these children almost invariably have had experience with children with Down syndrome. Or they are professionals who have cared for children with the disorder.
In Ohio, the Down Syndrome Association of Greater Cincinnati keeps a list of parents nationwide waiting to adopt kids with what it calls DS. The waiting list is 150 names long. Couples are waiting months to up to two years.
"It averages five to six calls per week. It has probably doubled from five years ago," said Robin Steele who started the list and the organization's adoption awareness program 23 years ago. Several years before she and her husband had adopted their first child, 4-year-old Martha, who has Down syndrome, out of foster care.
Martha is now 33.
The Steeles have eight children, from toddlers to adulthood. Only one, Ben, 18, is their biological son. The rest - from Martha to 9-year-old Cody - were adopted out of foster care.
"The agency believed she was unadoptable," Robin Steele said. "It was love at first sight. We met Martha and thought she was meant to be in our family."
Many feel likewise, for many reasons.
Thirty years ago, and certainly even today, the birth of a baby with Down syndrome often devastated parents. Information about the chromosomal disorder was limited. Schools, doctors and the community offered little to no help. Many couples, envisioning a lifetime of care with no respite, relinquished their children to group foster homes or state institutions.
Today, vastly more is known about Down syndrome. Society's view of the disorder and those who have it has dramatically changed.
"Today, pretty much everyone knows someone with Down syndrome," said Amy Allison, executive director of the Down Syndrome Guild of Greater Kansas City. "The stigma isn't there any more."
Indeed, children with Down syndrome now attend public schools, join sports teams, and graduate from high school. More adults with Down syndrome live on their own, in group homes, and even marry. They work in the community and live semi-independent lives. Stories of individuals with Down syndrome attending college are still rare, but are becoming more frequent.
Last week, Missouri Gov. Matt Blunt announced, as part of a budget cutting plan, that he wanted to slash state services to children with Down syndrome and other disabilities. Blunt said the state cannot afford the $27.7 million First Steps Program funded by the state and federal government. The trend in other states, however, had been the reverse. State and community services have mushroomed.
And although, medically, the disorder poses significant challenges, fewer parents now see them as insurmountable.
"Today, the outlook for a baby with Down syndrome is much better than it was even 10 years ago," said physician and geneticist Merlin Butler, director of the Pediatric Down Syndrome Clinic at Kansas City's Children's Mercy Hospital, one of the largest clinics in the nation.
A result of these changes is an adoption waiting list.
On one hand, you get people willing to adopt because they don't see Down syndrome as a burden. They see it as a manageable difference. With the variety of adoptive parents growing to include gay couples, single people, mix-raced and older couples, there are just more people willing to adopt.
On the other hand, you have more biological parents feeling the same way. The result:
"People are keeping their kids. A lot of people with Down syndrome kids just don't give up their children anymore," said Andrea Schneider, family coordinator for Adopt-A-Special-Kid, an agency based in Oakland that arranges special needs adoptions throughout northern California.
So even if you want to adopt, there are fewer children with Down syndrome available to adopt. Early prenatal screening for Down syndrome is a factor.
Today, tests can detect Down syndrome as early as nine to 11 weeks into a pregnancy.
"We hear there is a 90 percent termination rate," said Allison of Kansas City's Down syndrome guild. "There are just fewer children being born with Down syndrome."
Adoptive couples such as the Petersohns know what that means.
"We actually have our names on a couple of lists," Diane Petersohn said. "But it's pretty competitive out there."
It is clear who adopts and why, experts say.
More than 90 percent are people such as the Petersohns who have some experience with Down syndrome.
Sometimes they have had brothers or sisters, uncles, aunts, friends, neighbors or, frequently, other children with the disorder. Others tend to be nurses, doctors, therapists, special educators.
Diane Petersohn is a stay-at-home mom. Dave works as a binder for Rapid Solutions Group. Their Christian faith is essential to their lives. They have four biological children and three children they have adopted out of foster care.
One of those children is their daughter Darcie, 4, who came to them in 2001. She has Down syndrome. Their desire to adopt again extends from their great experience with Darcie.
"We fell in love with her very quickly when we got her," Diane Petersohn said. "You find that the love starts to outweigh the fear."
Bill and Cindy Kieber, both 46, of St. Joseph, Mo., adopted their son, Hunter, in 2003 after losing their biological son, Billy, to leukemia two years earlier. Billy was 8 years old. Hunter has Down syndrome. So did Billy.
"Billy brought us such joy and love and taught us that it was OK to be different," Cindy Kieber said. "When he died, we were lost."
Adopting Hunter, she said, "made us happy again. We have something to look forward to again. We have someone who needs us, someone to care for. Every day, when Bill (her husband) comes home exhausted and Hunter looks up and gives him a kiss and a hug, that's all he needs."
In Leawood, Kan., Tim and Melissa Walline had long wanted to adopt because Melissa had been adopted. Already they had four boys, one with Down syndrome.
Then Grace, now 5, came along when she was 2 days old. Her parents, Koreans in the United States, had just put her up for adoption.
"I think God just said we're supposed to have this child," Melissa Walline said.
Then there are Jill and Shawn Jones of Lee's Summit, Mo., who adopted their son, Dylan, 9, when he was almost 2 years old. Jill Jones is a speech therapist who works with kids with special needs.
They wanted a baby and had tried fertility treatments. They looked into foreign adoption. It was too expensive.
"We got to talking about what we really wanted," Jill Jones said. "For us, we wanted to share our lives with a child. Did it have to be a biological child? No. Did he even have to be the same race as us? No. Then we thought about what child needed us most. We decided it would be special needs."
None of the parents are fooling themselves, they said. Raising a child with Down syndrome can be challenging.
Most states offer a variety of free or low-cost services to very young children with special needs, including occupational, physical and speech therapy.
In Missouri, close to 2,000 children from birth to 18 are in the foster care system awaiting adoption. In Kansas, the number is 700. It is unclear how many have Down syndrome.
But when a child is adopted out of foster care in Missouri or Kansas, the states not only charge little or nothing for the adoption (private adoptions can reach $10,000), but in most cases the states also subsidize part of the child's care. In Missouri, families adopting out of foster care receive $225 to $304 each month depending on the child's age.
Nevertheless, for some prospective parents the list of Down syndrome-linked maladies, alone, can be daunting. Every child with Down syndrome is different. So are their problems.
From mild to severe, they can include congenital heart problems, digestive problems, lung problems, thyroid and immune system problems. A few of the children are susceptible to leukemia. Some children develop ear infections that lead to hearing problems. Hearing problems lead to speech delay. Other early problems include weak muscle tone and unstable neck vertebrae.
"We haven't even mentioned the brain," said Butler of Children's Mercy who called the developmental delays "global."
Cindy Kieber of St. Joseph said that something as normal as finding a babysitter can become a major endeavor. Speech, occupational and physical therapies become daily routines.
"Parents with children with Down syndrome need to be committed with what they are doing, or they are not going to succeed," Cindy Kieber said. "We work on every skill. We work on speech. It's not like we sit Hunter in the corner and he plays. Play is work for us."
The parents worry about their kids' friends and education. They worry about their health, safety and future. A prime goal for all the parents, they said, is to prepare their kids for adulthood and to live as independently as possible, perhaps in a group home or through assisted living.
Always, they said, the joy and love that comes with adopting a child with Down syndrome far outweigh any of the challenges.
"From the day we got her," Melissa Walline said of her daughter, Grace, "she has been nothing but a blessing to us."
