Mother helps others accept and cope with an autistic child

Mother helps others accept and
cope with an autistic child

VALARIE SCHWARTZ

If you go to Ephesus Elementary and see a group of adults gathered about, chances are, somewhere there in the center of it, you'll find Jamezetta Bedford.

She's the bomb. And that's a good thing.

Like many others in our community, Bedford and her family moved to North Carolina for the services available for their child with a developmental disability. Jamezetta and Ed have three children and their middle child, Shannon, is autistic.

"When Ed and Jamezetta moved here, they both immediately became involved in the community," said Maryanne Rosenman, a Chapel Hill-Carrboro School Board member. "They joined CHALU and they both became involved, not only in that; Ed became a scout leader."

CHALU is the Chapel Hill Autism Local Unit, a support group for families with a member who has a developmental disability. Ed, a lawyer, started publishing a newsletter for the group, helping the parents better understand special education law.

"Jamezetta has an incredible amount of energy," Rosenman said. "A few years back she was on the School Governance Committee at Phillips at the same time she was PTA president at Ephesus."

Rosenman and Bedford serve on several of the same committees, including the Strategic Planning Task Force, and Bedford is co-chair of the SGC at East Chapel Hill High School where her eldest son is a junior. She is also a substitute teacher in the school system.

It was 1992 when the Bedford's decided to relocate here from the Baltimore area.

"North Carolina has the best services for autistic children," Bedford said. "We came to Chapel Hill because we thought it would be nice to have a smaller community and because of the reputation of the school system."

By the time they moved here, Bedford had already gotten through the early stages of acceptance that must come for every parent of an autistic child -- especially the mother.

Until recently, autism in a child was blamed on the mothers, Bedford said. "Back in the 50s, they would separate the child from the horrible mother. Those poor older parents. Children didn't make the progress they do today." But she said that even today there are guilt, self-doubts and questioning --what did I do wrong?

With an educational background in mathematics, Bedford has a penchant for approaching solutions through logical steps. After Shannon was diagnosed at 18 months, she did the research and found the professionals who supported what she learned. Dr. Eric Schopler, co-director of TEACCH (Treatment and Education of Autistic and related Communication handicapped Children) was one of them.

"He values partnering with the parents, who know the child, and considers parents as co-therapists," Bedford said. She learned to take care of herself and her marriage despite having a child with special needs. "He said, 'this is not a sprint, it's a marathon.' It's a lifetime of coping and adjusting."

Colleen Glair met Bedford soon after she moved here from New York in 2000.

"My son goes to the same school as her youngest son. I was comfortable talking to her right away," Glair said. "Jamezetta really is a good contact person for people who need services. She lets you know where you need to go without wasting your time. And she motivates people to get off their rear ends. She's a little dynamo.

"Jamezetta is a parent who wants all children to do well and does the necessary work to make that happen," Glair said. "What I have learned from Jamezetta personally, is that it's OK to speak the truth about the challenges of parenting and if someone needs supports in life, that's OK also."

Unlike most developmental disabilities, autism is not apparent in the very early stages of life.

"At 18 months, we knew something was wrong," Bedford said. Getting and accepting the diagnosis took another chunk of time and a lot of energy. "You find out really quick who your friends are and aren't."

Once the family settled into Chapel Hill when Shannon was about 5, things went pretty smoothly. Shannon was in the Brownies, participated in Special Olympics in swimming and went on family vacations. Then adolescence set in, and Shannon could not be controlled in the home.

Because four out of five people with autism are male, there are fewer resources for girls.

"It's harder to find a program," Bedford said. What they finally found is almost an hour away but the group home in Murdoch has been a godsend. "She's doing very well."

Bedford has not slowed down, however. She is still involved and still working hard to get more facilities and programs in place for people with autism.

"I'm always trying to figure out somebody's agenda," Glair said. She can't find one with Bedford. "She just wants kids to have a better experience. We all want it, but to do it -- come on."

Bedford does it. And people are watching her and learning from her.

"She keeps things going at CHALU," Rosenman said. "It's not surprising that's she involved for her kids, but what she does is not just for her kids. What she does is for the larger community, for the common good."

Glair said that through Bedford she has learned to accept that autism is just a part of life -- it isn't everything.

"There are a whole lot of worse things than autism," Glair said. "You really can become myopic when you have a child with autism. Jamezetta gives you the glasses.

April is National Autism Month. If you would like to know more about this disability that effects 1 in every 500 individuals, the Autism Society of North Carolina in Raleigh is a good resource. Call 1-800-422-2762 or check the Web site at www.autismsociety-nc.org