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Through optimism, disabled kids can prevail

sandy and Robert Clayton with their 3-year-old son, Sam, who has Down syndrome. - Margo Horner/The Mirror
sandy and Robert Clayton with their 3-year-old son, Sam, who has Down syndrome.
— image credit: Margo Horner/The Mirror

By MARGO HORNER

The Mirror

Three-year-old Sam Clayton loves Cheetos, cars, his toy guitar, “The Wiggles” television show and big hugs.

As with most parents, Sandy and Robert Clayton, both 42, were overjoyed at the birth of their first child.

Then they were shocked when, in addition to all the congratulations cards and gifts, they received two sympathy cards — one from a doctor and one from a minister.

Sam Clayton was born with Down syndrome.

One of the most disappointing things about raising a child with Down syndrome is not the disability, but public perception of it, Sandy Clayton said.

“It’s not anything to be ashamed of or to hide,” she said.

Just a few weeks ago, at church, a man walked up to Sam and placed his hand on his forehead. He told Sandy that he would pray for God to heal her son.

“Thank you, but he doesn’t need healing,” Sandy told the man.

“I think he’s fine the way he is,” she said later. “He doesn’t need to be fixed. He just needs to be encouraged and loved and accepted.”

Sandy was 12 weeks pregnant when her doctor performed a routine test that would indicate whether her baby was at risk for Down syndrome. Results showed about a 10 percent chance of Sam having the condition.

“We knew from the beginning that it didn’t matter to us,” she said.

More frequently these days, doctors test fetuses for Down syndrome and, if the fetuses have it, encourage the mothers to abort,

said Jodi Reimer, a family support coordinator for ARC of King County, a nonprofit organization that advocates for people with developmental disabilities.

Last year, the American College of Obstetricians and Gynecologists recommended that doctors screen all pregnant women for Down syndrome regardless of age. Prior to that, only women over 35, thought to be more at risk, were screened.

Oftentimes, doctors deliver the news that a baby has Down syndrome along with information on abortion procedures, Reimer said.

“It isn’t like ‘Here, you have a choice,’” she said. “I have had parents that have called me that were just in tears.”

Reimer said she and other advocates are pushing for doctors to give patients more information about Down syndrome and encourage them to make their own choice about whether to have the baby.

“There are parents who find this really rewarding,” she said. “I want to make sure that parents don’t just get the news that their child has Down syndrome and no other support or resources.”

Reimer, who lives in Federal Way and has a teenager with Down syndrome, said the trend toward aborting babies with Down syndrome is alarming.

“It’s almost telling us that our kids shouldn’t be here,” she said.

Sandy Clayton agreed that terminating babies with Down syndrome is a disturbing trend.

“It just makes my skin crawl,” she said. “We made it clear on the offset that abortion was not even an option for us.”

Doctors who tell patients that a child with Down syndrome will be a burden are simply wrong, Sandy said.

“Most of the OBGYNs who are pushing for it have never had any interactions with a child with Down syndrome,” she said.

Vital therapy:

Besides an abundance of various therapy sessions, raising Sam hasn’t been any more difficult than raising a typically developing child, Sandy said.

He always sleeps through the night and his progress is very slow paced.

Sam’s therapies are extensive. Robert left his job and became a stay-at-home father to accompany his son to the various sessions. They take classes at the Birth to Three Center in Kent, and Sam participates in numerous physical therapy sessions.

“The earlier they start, the better they do,” Robert said of the children in the Birth to Three program, all of whom have developmental disabilities.

Robert predicts that Sam will need less help in school later on because of his work in the Birth to Three Center. So far, he is doing well with vocabulary and language. His speech is comparable to some typically developing children.

Sam is most delayed in some of his motor functions. He couldn’t hold his head up by himself until after he was a year old. And at age 3, he still has trouble walking, and uses a walker and orthopedic shoes.

“We know he’s going to walk. It’s just going to take him longer,” Robert said. “He’s right on the verge. He’s not going to be very long.”

Sam will eventually do everything a typical child will do, Sandy said.

“The one thing I want people to know about Sam is we want people to treat Sam like they would any child, but recognize his limitations as well,” she said. “Sam and people like Sam are not stupid. They have a delay.”

Opportunities abound

Circumstances are slowly changing for people with Down syndrome, and opportunities are more abundant than ever.

“Thirty years ago, they would institutionalize people with Down syndrome and assume they couldn’t succeed,” Sandy said.

Today, people with Down syndrome get married and start families. They attend vocational courses at colleges and obtain satisfying jobs.

“There’s just a whole range of opportunities,” Sandy said. “Our goal is to have him included as much as possible.”

Indeed, adults with Down syndrome can lead satisfying lives, said Susan Atkins, whose 24-year-old daughter, Alexa, has Down syndrome.

Alexa recently moved into an apartment and is living on her own, with some support. She holds a job at Starbucks that she loves. She was recently promoted to barista.

“She’s a tax-paying citizen with good benefits, which is really nice,” Atkins said of her daughter.

Alexa also has a boyfriend she’s been dating for five years. The couple go on weekly date nights to dinner or movies.

“She’s learned to really adapt her life,” Atkins said. “She keeps learning — every day, every year.”

Contact Margo Horner: mhorner@fedwaymirror.com or (253) 925-5565.

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FAST FACTS:

Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

Down syndrome is the most commonly occurring chromosomal abnormality. One in every 733 babies is born with Down syndrome.

There are more than 350,000 people living with Down syndrome in the United States.

Down syndrome affects people of all ages, races and economic levels.

The number of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under age 35.

People with Down syndrome have an increased risk for medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease and childhood leukemia. Most people with Down syndrome lead healthy lives.

Common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and possess these characteristics to different degrees or not at all.

Life expectancy for people with Down syndrome has increased from 25 years in 1983 to 56 years today.

Quality educational programs, a stimulating home environment, good health care, and positive support enable people with Down syndrome to develop their full potential and lead fulfilling lives.

Researchers are making strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome.

Source: The National Down Syndrome Society,

www.ndss.org

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