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When Motherhood Takes on New Meaning
Parenting a Child With a Disability
By iParenting Staff
When Judith Turner's daughter was born, she seemed healthy, if a bit on the small side. When she began walking, at around 13 months of age, "She walked on her toes, but we were reassured that that wasn't unusual," says Turner, 36, a freelance medical writer from suburban Salt Lake City. But by the time Sarah was 3 years old, "she was still a toewalker and her gait was abnormal, although nobody could put a finger on what it was that was odd," she says. "Our first of many neurologist visits yielded a diagnosis of 'clumsy child.'"
According to Fisher, "Parents need to become advocates for their children. Being an effective advocate for the child means becoming an educated consumer, one who looks for services that have documented validity and effectiveness through research. One useful approach is for parents to ... ask the provider to 'show me' the evidence regarding the effectiveness of the services offered."
After a battery of tests, Sarah underwent plantar release – surgery to lengthen the tendons in the feet, done through incisions across the arch – and for a time, her walking improved. But, says Turner, "by the time Sarah was 5, she was crawling a great deal as a resort of spasticity." By then, Turner's husband was a medical resident, and a conversation he had with a neurologist prompted the Turners to research a condition called dystonia – a lack of normal muscle tone caused by disease or infection of the nervous system. That diagnosis was confirmed by several specialists, and for a time, Sarah showed excellent response to medication. But she did have more surgery and spent several months in a wheelchair.
"Ninety percent of children [with dystonia] have it as a stand-alone problem as a result of a specific genetic defect," Turner says. "Sarah was tested, and she
