When Cathy Shallenberger and her partner started the process to adopt their first child, they were interested in children with special medical needs. But even though they are both physician's assistants, fears about what they could handle made them skip over most of the "will accept" options from their agency's list.
When they began the process to adopt their fourth child, they checked off almost every box. What happened over the years? They gained confidence in their parenting abilities — and discovered the joys of special needs adoption.
New adoption pathways
Most families don't set out to adopt a child with special needs. They've started the process to complete a non-special needs adoption when a phone call, e-mail, or chance conversation changes everything.
Garey Schmidt's paperwork was already in China when he received an e-mail from his agency about available special needs children. He took a look…and fell head over heels for an adorable child who happened to have a cleft palate.
Two days of Internet research told him that this situation was manageable for a single parent, and that his insurance would cover medical costs. A new course was set.
Exposure to special needs kids also leads people to the decision to adopt in the first place. A family meets a child with medical problems at an adoption gathering, or they know children with disabilities within their extended families. They realize they can give a home to a child who might not otherwise be adopted.
Some families choose special needs adoption for purely practical reasons: shorter waiting times or a waived singles quota. Or family members may have a medical background themselves, or they may live near excellent care facilities.
But by far the most common motivation for following this path is falling in love with a particular child. "We felt in our hearts that he had been waiting for us," says Nancy Ferguson, whose son's original diagnosis of cortical blindness turned out to be in error. "We knew he was meant for our family."
Evaluate yourself
How do you know whether you should consider adopting a child who has a diagnosed medical condition?
The most important trait you need is flexibility. "Open to some unknowns" is a phrase often seen in photo listings of waiting children. If uncertainty makes you crazy, special needs adoption is not for you.
A diagnosis may be incomplete, even inaccurate, cautions Sarah Springer, M.D., a pediatrician who specializes in international adoption. "Due to translations from language to language and from medical to non-medical personnel, by the time you get the information, it's more of a general, ballpark estimate about the child's condition," she explains.
Ability to roll with the punches is important to special needs adoption, because flexible expectations are a significant determinant in adoptive parents' happiness, according to Karen Foli, Ph.D., and John Thompson, M.D., authors of The Post-Adoption Blues.
"Our research leads us to believe that some of the stress and depression that can hit adoptive parents grows out of the expectations we hold," they explain. The ability to keep an open mind about your child's condition or outcome is crucial.
The next thing to consider is your resources. Do you have family support? Good health insurance? Are you able to take time off from work to attend medical and therapy appointments? Do you live close to good medical care? "Access to resources can determine whether a special need is manageable or major," says Springer.
You must also be willing to advocate for your child. Parents of kids with medical conditions must at times act as case managers and social workers. They must educate themselves about their child's condition and then search for and push hard to get the help their child needs from medical professionals and their school district.
At the same time, parents need to remember to put their child first, before the disability, says Janet Bowman, a service coordinator for the Pittsburgh-area Alliance for Infants and Toddlers. "It's important to appreciate your child's humor and personality, the quirks that make him special."
Kyle Messner, whose son is missing his lower right leg, emphasizes this point. "He is probably the most popular child at his preschool. He has a wonderful personality and charms everyone he meets. Bottom line," says this proud mother, "my son is not his need. He is a child who is loved and who is full of love for life."
Dr. Springer points out a hidden strength of children with medical special needs: They are often very emotionally healthy. "The fact that he is alive," she says, "is a testament to the fact that someone has worked hard to feed him, hold him, and nurture him," above and beyond the standard of care usually afforded by an institutional setting.
As you evaluate yourself, be honest. You may feel an urge to "save" these children, but you must be realistic about what your family is like. If your family is obsessed with sports, for example, adopting a child confined to a wheelchair could be unfair to both him and you.
With practical concerns in mind, look at photo listings with an open heart — and you may surprise yourself. Take courage in the fact that many families make the journey from minor, correctable needs to something more visible and major.
"Many of the things that sound scary aren't," says Dr. Springer. "They're perfectly compatible with a normal life." Be open to that "click" of recognition that tells you you've found your son or daughter.
The challenges
When Shallenberger and her partner brought home their second child, they knew he had a cleft lip and palate. What they didn't know was that he had other medical conditions, including celiac disease, which led to severe digestive problems. He also had an eye condition, some hearing loss, developmental delays, and attachment difficulties.
"We wondered if we'd upset the apple cart with this adoption," admits Shallenberger. "We felt overwhelmed, and we doubted ourselves."
What they've learned, and communicated to other families, is that self-doubt is a normal part of special needs adoption. Families have to hang in there and have confidence in their ability to find answers.
It's also important to trust your parenting intuition. Shallenberger and her partner were told by several therapists not to teach their hearing-challenged son sign language because it would inhibit his verbal skills.
"That just didn't sound right to us," says Shallenberger. "So we followed our instincts, taught him to sign, and it changed his disposition for the better." Their son has also learned to talk quite well.
Another thing to consider is how friends, family, and strangers may react to the news of your special needs adoption. Some may not understand why anyone would deliberately take on a child with physical or medical challenges, and their comments can grate.
"I get tired of hearing how wonderful we are," says Mary Genandt, whose daughter has CP, a type of epilepsy, and an abnormally small head. "We just love our child — we're not trying to be special."
The joys
On the flip side, the challenges and frustrations in part lead to the rewards of special needs adoption. Deb Nudi's son, Brandon, adopted domestically, was born with a cleft lip and palate and was diagnosed with "failure to thrive."
"He wasn't walking or talking when he came home at 14 months," Nudi says. "We enjoyed helping him to achieve these things." The Nudis took advantage of early intervention services in their area, and booked as many as three doctors' visits per week in the early months. Now, "he's like any other kid — he just has a crooked little grin," says Nudi, adding that he may face further surgeries down the road.
Shallenberger speaks of the new view of perfection she's gained from adopting Benton. "We've learned that the greatest perfection is imperfection. He may have his needs, but he's the perfect Benton."
The ability to celebrate every accomplishment and to accept what can't be changed can bring profound joy. "When we met our daughter 16 months ago, she couldn't hold her head up, her sight was limited, and she had as many as 100 minor seizures a day," says Genandt.
"Now, she is almost sitting up, smiles, laughs, and has gained eight pounds and grown four inches." Though her daughter will always be delayed, "she will be able to do more than anyone ever thought she could."
If stories like these touch your heart, why not request your agency's "waiting children" list or check off a few more items on the "will accept" form? You don't need to be a saint, as any family who's adopted a medically challenged child will tell you. For many children with medical needs, the biggest need of all is a loving home.
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