Adopting a child with special needs brings challenges, great rewards
Friday, July 10, 2009
Caroline O'Hara wrapped her tiny arms around her adoptive mother, instantly locking eyes with the woman who rescued her three years ago.
"Do you want me to hold you?" asks Anne O'Hara, wiping a wayward strand of hair from her 4-year-old's face.
Caroline smiled and said yes using sign language, one of about 400 signs she has mastered in her young and challenging life. Then she cuddled up in O'Hara's bosom and beamed contentment.
"She loves to be held, and I'm meant to hold her," O'Hara explains.
When O'Hara found Caroline in 2006, in a Chinese orphanage for children with special needs, the baby girl weighed just 19 pounds, showed few signs of liveliness and was on death's door.
"All I knew is that she had a cleft lip-palate, but I was drawn to her sweet face and I just knew she was my daughter," says the single mother from Clarendon Hills and vice president of human resources at the Rehabilitation Institute of Chicago.
Caroline was abandoned by her biological mother at the gates of the crowded orphanage. There she wasn't held enough, which helps explain her sensory integration problems and constant need for hugs, cuddling and affection.
O'Hara spent about $25,000 to bring Caroline into her life, but it's a drop in the bucket compared to Caroline's worth in her life, she says.
"I couldn't imagine my life without her," O'Hara says as Caroline hops off her lap and reaches for her mother's phone.
Caroline has obvious communication problems, but she's smart as a whip and a recent MRI shows no neurological abnormalities. Her first word was "mama," which tickled O'Hara, but it took her a while to be physically able to say "mommy."
She attends the Early Childhood Education program through her school district, followed by care and therapy at the Easter Seals DuPage and Fox Valley Region.
"I have been profoundly touched by our experience at Easter Seals," O'Hara says. "I haven't met one parent who would trade in their situation for anything else."
Caroline is happiest when playing in something messy, like shaving cream, but she also enjoys acting out scenes from her favorite movies, "Elf," "Monster, Inc." and "Wall-E."
"Despite the communication issues, you can see her compassion, joy for life, loving nature and sweetness," O'Hara insists. "She has a lot to say and offer the world."
This is the credo behind O'Hara's adoption of Caroline, and also for most adoptive parents of kids with special needs. For some, it's a calling. For others, it's a mission. For O'Hara, it's the focal point of her existence.
Many people have since asked her, "Do you know what you're getting into?" She tells them she signed up to be Caroline's mother, with all that comes with it, just like any parent.
"Parents need to be open to whatever comes along, and if they feel in their heart they can take this journey, then they should," she says. "Not everyone can or wants to, so those of us who want to have to reach out to the kids who need us."
However, O'Hara quickly points out, there are many challenges to adopting a child with special needs and it's crucial to be prepared, organized and supported by others. Insurance issues alone can be a full-time job, let alone learning to navigate the local educational system, where to apply for assistance and endless medical needs.
For instance, O'Hara regularly deals with a dentist, endocrinologist, neurologist, geneticist, dietitian, dermatologist, speech language pathologist, occupational therapist, physical therapist and a surgeon.
Two months after Caroline arrived here, she had cleft palate surgery. She has since had five more surgeries for various problems and another one is scheduled in July to re-repair her palate.
"I've had to learn to be an advocate for her. The central point of her life is me and that can be very scary."
It can also be joyous, such as when Caroline first sipped through a straw or switched her vowels from "Nemo" to "Mommy," or learned how to sign "I love you."
"She has brought more into my life than I could ever bring into hers," O'Hara says, looking into Caroline's eyes.
Is adoption for you?
Adopting a child with special needs is a life-changing experience, filled with daily challenges, frustrating obstacles and joyous surprises, parents and advocates say.
"It's harder to find parents for special needs children, but most children waiting for adoption have some sort of special need," says Rita Soronen, executive director of the nonprofit Dave Thomas Foundation for Adoption.
Today, there are roughly 130,000 U.S. children in foster care and about 20 percent of them are waiting to be adopted. In the Chicago area, there are 16,000 waiting children, many of them with special needs.
Although today's dire economy is a factor in the number of adoptions, experts such as Soronen say there are many support mechanisms in place to aid potential parents.
"You need to learn, learn, learn as much as possible before getting into it," Soronen says. "But once you do, jump into it with your eyes-and your heart-wide open. It's a true leap of faith."
Questions to ask yourself before adopting
If you are considering adoption of a child with special needs, here are a few questions to first ask yourself, your spouse and your family.
• Do I have the physical, mental and financial resources to do this?
• Do I have the support I need from my family, friends and neighbors?
• Exactly which disabilities am I prepared to handle on a daily basis?
• Have I done my homework about insurance issues, medical problems and local support agencies?
Jerry Davich is a freelance writer and Chicago area dad of two.