When Karen Tamley and Kevin Irvine filled out the applications to begin the process of adoption, they were nervous. Karen uses a wheelchair and her husband has hemophilia, hepatitis C and is HIV positive. They would be considered parents with disabilities by the officials reviewing their application.
“At the start of our adoption process we were not concerned about whether we were capable and would make good parents, but were rather more concerned about whether we would be viewed as capable parents by the adoption counselor at the agency as well as by the birth mother,” said Karen, who is the commissioner at the Mayor’s Office of People With Disabilities in Chicago.
They didn’t have to worry.
“Parents with Disabilities” No Obstacle to Adoption
Even before completing the required classes, the adoption agency approached them and asked if they would be interested in adopting Dominicka, a five-month-old baby with Apert Syndrome, which is a cranio-facial disability resulting in fused fingers and toes and a flattened mid-face.
“She has had a number of surgeries since we took her home,” said Karen. “But she is a happy and smart little girl who gives us great joy. We feel having disabilities has made us more able to parent a child with a disability.”
Tapping into the Moms’ Network
Karen found a network of other moms with disabilities and they exchanged parenting tips and adaptive equipment. “A friend of mine who uses a wheelchair and had a baby two months younger loaned me a harness that she had specially made by the Engineering Department at the Rehabilitation Institute of Chicago,” said Karen. The harness enabled Karen to pick up Dominicka from the floor and place her on her lap.
Karen borrowed an adapted crib from another mom of twins who uses a power wheelchair. “Instead of a side rail that goes up and down requiring you to lift the baby up and down (out of reach for someone in a seated position) the rail was adapted to slide on a track. That way, you could just set the baby in and slide it shut,” said Karen. The crib was adapted at the University of Illinois Chicago by the rehabilitation engineers there.
Fighting for the Right to Be a Mom
When Valerie Brew-Parrish, a polio survivor from Joliet, Illinois, became pregnant, an obstetrician told her that she needed to abort the baby. She and her husband Rick were also told that she was “too disabled” to be a mom and that the pregnancy would kill her.
Instead of listening to the doctor, Valerie took action and consulted an experienced doctor who supported her and stayed by her side during three days of labor. Her daughter, Tara, was born via C- section and Valerie was intubated for three days afterwards.
“I had to learn to diaper and dress my baby with my feet,” said Valerie. “At first, Tara wore some lopsided diapers, but I got the hang of it. My husband is blind, so when Tara learned to walk, we put bells on her shoes so Rick could hear her.” Clearly, being parents with disabilities did not keep Valerie and Rick from being extraordinary parents.
Valerie learned to manipulate the highchair tray with her knee and the crib rails with her feet. Rick created a floor cart that Valerie could use to scoot Tara around the house. “When Rick had to travel, he made me a porta-crib that would swing open to the side and he cut the legs off since I couldn’t lift Tara.”
Valerie found a network of local moms with disabilities and she, in turn, offered support to other moms around the world via email. She recommends The Disabled Woman’s Guide to Pregnancy and Birth by Judith Rogers.
Resources for Parents with Disabilities: Where to Start
Local rehabilitation hospitals are often a great source for adaptive equipment and support groups. Another online resource that is frequently referred to is Through the Looking Glass. They operate a Parent-to-Parent Network for parents with disabilities to exchange ideas and support with one another.
