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Vol. 45 No. 50
March 7, 2007 |
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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.
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Daniel, Bryan, Robin and Kevin Roach.
TLIC photo/Jack Healy |
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“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.”
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Last modified:
11/21/2007
© Copyright 2007 The Long Island Catholic |
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