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Home › Articles › Special Needs › Spina Bifida

Spina Bifida

A New Hope

By Kelly Burgess

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ung adults with spina bifida. But it starts even younger. Most chapters host camps for children with spina bifida with counselors trained in the special needs of these children. The camps are a first step for young children to see others who face the same challenges. As they get older, especially in the adolescent and teen years, camp becomes even more important as a social outlet.

"I know a lot of young people with spina bifida who are holding good jobs and living solid, independent lives," says Brownstein. "They're working, living alone, meeting, dating – everything a young person is interested in doing." The key, says Brownstein, is letting go.

Gabriela Jackson, of Godley, Texas, is trying. She knew nothing about spina bifida until she found out 17 weeks into her pregnancy when a sonogram discovered hydrocephalus. Her daughter, Cassidy, now 3, is highly functional, but does have to be catheterized. She currently walks with leg braces, and it has been suggested to Jackson that she's old enough for a wheelchair, but Jackson worries that the chair will prompt Cassidy into "taking the easy way out."

On the other hand, she hasn't yet started Cassidy in a playgroup or preschool yet because she worries about Cassidy's instability when she's on her feet and about having someone catheterize her who doesn't have a medical background. "To me, Cassie's safety is paramount," says Jackson. "At this age, the children want to run around and hug, and I'm worried she'll be easily knocked down. Also, the law doesn't require that a nurse catheterize her, and I'm not comfortable with just anyone doing that."

Emily Gonzalez-Abreu of Florida, on the other hand, recently had to fight for her daughter's right to attend daycare because of the issue of catheterization. Angeline had been attending a daycare center at the university where her father works. The teachers were trained to catheterize her, and everything seemed to be going fine. Then the university's attorneys contacted Gonzalez-Abreu and told her that, due to insurance issues, they would not be allowed to catheterize Angeline any longer. Gonzalez-Abreu was stunned at the decisin; not only had there been no problems that she knew of, but she's well known for her activism on behalf of people with spina bifida, and her husband is a well-respected researcher in the field of autism.

Gonzalez-Abreu tried to reason with the university's lawyers, consulting often with her intervention caseworker but had no luck. Finally, she wrote to Florida Governor Jeb Bush. To Gonzalez-Abreu's amazement, he took up her cause. The problem is now solved, but Gonzalez-Abreu is even more dedicated to educating the public about spina bifida.

Brownstein applauds Gonzalez-Abreu's fighting spirit. "The most successful people I know with spina bifida are those who had parents that made sure they got involved in sports – either wheelchair sports or regular sports that had been adapted," says Brownstein. "They need to be treated just as you would an able-bodied child. These kids are part of our society and part of our community, and they'll be more successful members if they're taught at an early age to deal with life as it comes."

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