Saturday, March 10, 2007

Mother shares joys, blessings of raising a son with Down syndrome

By Pete Sheehan
Senior Reporter

Hicksville — When Robin Roach takes two-year-old Bryan shopping, people sometimes ask if her son has Down syndrome.

“Yes,” she answers.

“I’m sorry,” many of them reply.

“I’m not,” Roach responds.

“No one wants her child to have problems,” Roach noted, but she is hoping in her own way to educate people about what Down syndrome, a genetic defect, is and what it isn’t. That’s why she spoke at a recent meeting of the Long Island Coalition for Life here Feb. 26.

“He’s a joy,” Roach told the audience. She notes that he is only mildly mentally retarded — as are many such children. He has had delays in his physical development, Roach said, but she eagerly anticipates that he’ll be walking soon.

“My son is first and foremost a child, a two-year-old boy,” Roach said. “Down syndrome does not define him.” Her concern is that people often exaggerate the problems associated with Down syndrome, which include mental retardation and sometimes physical handicaps, and overlook the child.

Mothers’ stories

Her education efforts, Roach said at the meeting at the Joseph Barry Council Knights of Columbus Hall here, are not limited to random encounters in stores. Last year, she and other mothers compiled a book, “Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.”

Through the Internet, Roach found a support network of other parents of children with Down syndrome. With this book, Roach hoped to pass that support on to other parents. In particular she hoped to assist pregnant mothers considering abortion because of a Down syndrome diagnosis.

“There are books out there, but many of them are burdened with medical jargon” and are not designed to give the information and assurance that parents need, Roach said. “I wanted a book that would give mothers the information they are looking for.”

Roach asked mothers she met through the Internet to share their stories. She joined forces with Kathryn Lynard Soper, also a mother of a child with Down syndrome and a magazine editor; they self-published “Gifts” through Amazon.com last year.

“It sold so well that it was picked up by a publisher,” Wood-bine House, and is scheduled to come out in July, she said.

Presumptions

When she was pregnant with Bryan, Roach and her husband, Kevin, already had two sons. Though she had decided against amniocentesis and alpha protein blood tests to check for fetal defects, she agreed to an ultrasound.

The perinatalogist who studied the ultrasound results noticed signs of Down syndrome and chastised her, Roach said. “What do you mean you didn’t have amniocentesis?” the perinatalogist said, and warned her that it would be too late for her to “terminate,” have an abortion.

“Of course I had no intention of ‘terminating,’” Roach said, but the perinatalogist’s presumption was upsetting.

Roach’s obstetricians were supportive and referred her to a mother who had recently given birth to a child with Down syndrome. “That was very helpful,” Roach said.

She also began researching the subject, met with a social worker from the Association for Children with Down Syndrome, and visited a school that the association operates. She also found support from her husband Kevin, her mother — “she was my rock” — her in-laws, and her pastor, Father James Bowman of Corpus Christi Church, Mineola.

“I was scared,” but greeted her new son with love and joy while diligently seeking help for him.

Treat disease, accept child

“Bryan is doing as well as he is because of early intervention,” a combination of medical vigilance and aggressive use of physical, occupational, and speech therapy. “He goes to a school for children with Down syndrome two half-days a week and looks forward to it.”

The problem, she said, is that most people don’t know about early intervention and assume the worst when they learn that a child will be born with Down syndrome. “It’s not that way with other diseases,” such as autism, cystic fibrosis, or cerebral palsy. “There they treat the disease and accept the child,” she said.

She cited statistics that women who receive a prenatal diagnosis of Down syndrome choose abortion 90 percent of the time. With new less invasive and more accurate testing procedures that are recommended for all pregnant women, Roach said, the number of such abortions is likely to increase.

The critical factor is prenatal diagnosis, she said, which confronts already anxious parents with the disturbing news while giving them few of the facts. “Plus, you are talking about pregnant women, whose emotions are already volatile.”

Roach advocates a 48-hour waiting period for pregnant women who receive a prenatal diagnosis of Down syndrome and a requirement that such women speak to a social worker experienced with Down syndrome before having an abortion.

She noted that a bill sponsored by Senator Ted Kennedy of Massachusetts and Senator Sam Brownback of Kansas would require physicians to be trained in counseling patients about fetal deformity. “I don’t agree with Senator Kennedy on abortion, but he and his family have been champions for people with Down syndrome.”

Though Roach admits to the difficulty of having a child with Down syndrome, “along with the heartaches come a lot of beautiful moments. I believe that God has used this to make me a better person, more patient.”

Her husband looks forward to Bryan and their other sons joining him in the Knights of Columbus some day. Roach held back tears as she read a letter that her older son, Danny, had written at school to Bryan. “It has made my sons more accepting.”

“I don’t care if you are different,” Danny wrote to Bryan, “because you are still my baby brother.”

Original text can be found here.

2 comments:

jennifer said...

Robin, thank you for having the vision and determination to bring these stories together, along with Kathy. GIFTS is the kind of book many of us wished for when we were new mothers--you made it happen. Thank you!

nancyiannone said...

Robin Thanks for your efforts - I wish we could have spent more time together at the symposium!