- Associated Press - Monday, January 16, 2017

WEST MONROE, La. (AP) - Two-year-old Ryker Cole sat in a pile of sock monkeys, Mickey Mouse, Elmo and other stuffed animals as his mother, Hallie Perkins, threw another handful down onto the bed. He laughed as she leaped off the ground and into the bed. When she landed next to him, she leaned over to kiss him on the lips.

Perkins spends much of her time playing with Ryker. He’s a high-energy kid who sprints around the house and climbs onto the furniture. He can operate an iPad, which he uses to play games, faster than some adults. It can be exhausting for Perkins, who worries he might get hurt.

Ryker was born with Down syndrome. Down syndrome is a congenital condition. It affects roughly 400,000 people in the United States, according to the National Down Syndrome Society. About 6,000 children are born with Down syndrome each year.

The West Monroe resident was 21 years old when she found out that there was a chance that Ryker would have Down syndrome. When she was 19 weeks pregnant, the doctor performed routine blood work to see if there were any abnormalities. Perkins said she didn’t think twice about it because blood work is part of pregnancy.

“I went about my business that day like that blood work was nothing,” she said.

A few days later, the doctor called to tell her that the test for Trisomy 21 had been positive. Trisomy 21, which occurs when a person is born with three copies of chromosome 21, is the most common type of Down syndrome. In a genetically normal embryo, a person has two copies of each chromosome, one from each parent. Ninety-five percent of Down syndrome cases are caused by Trisomy 21, according to the NDSS.

Smiles Park playground equipment arrives at Kiroli Park

Perkins called her mother, crying. Her mother, like the doctor who had spoken to her on the phone, suggested she see a specialist.

“At this point I was in denial. I didn’t believe Ryker had Down syndrome.”

According to the doctor, there was a 95 percent chance that Ryker would be born with Down syndrome. Perkins hoped that he might be one of the 5 percent for whom that blood test was inaccurate. The doctor also suggested another test: amniocentesis. Amniocentesis tests the fluid in the amniotic sac, which protects the developing fetus inside the womb. There is a small risk of miscarriage because of amniocentesis. But, that risk ranges from 1 in 200 to 1 in 400 procedures, according to the American Pregnancy Association.

It was not a risk Perkins was willing to take. She was beginning to accept the diagnosis and wanted to keep the baby.

“Weeks went by and I had a lot of people pray over Ryker, put their hands on my belly and just pray that he was healthy because that was my next goal. I’d kind of accepted but not really. I kept saying, ‘OK, God, if this is what I’m going to be blessed with, please let him be healthy.”

Down syndrome can manifest itself in a person’s physical appearance and cognitive development. People with Down syndrome are often small in stature and have low muscle tone. Ryker’s heart has to be monitored because heart problems are common among people with Down syndrome. People with Down syndrome also experience cognitive delays, which are not usually severe. Ryker, for example, is non-verbal.

He communicates physically, through gestures and touch. Sometimes he asserts himself aggressively, by biting or scratching. Perkins said he is learning to use “soft hands” when he touches someone, so he doesn’t hurt them. She said that he learned to hug his friends at the First West day care he attends twice per week, rather than hurt them.

Ryker sees a speech therapist, Wendi Richardson, who works with EarlySteps, a program run through the Louisiana Department of Health to provide interventions for children under 3 who may face developmental delays. Richardson combines sign language and verbal skills to help develop Ryker’s ability to speak and communicate nonverbally. Ryker mimics her as she enunciates words like “mama,” which he’ll use often. He plays vocabulary games on the iPad, learning to identify things like animals and vehicles.

Occupational therapy can help combat the physical weakness that comes from having low muscle tone by strengthening a patient’s shoulders, arms, legs and core. Ryker works with an occupational therapist a few times each week, both at home and at Melanie Massey Physical Therapy in West Monroe. Play is a crucial part of his therapy sessions. Throwing a large bouncy ball helps him develop the muscles in his shoulders and back.

Perkins continues the work with Ryker outside of therapy. They bond through play, and she talks to him constantly. She said she can tell he understands her, even though he does not talk back yet. Once Ryker is old enough to go to school, Perkins said she wants to study occupational therapy.

For now, as Ryker grows, Perkins said she is learning to be his advocate. Her goal is to make sure he is treated the way his friends and classmates without Down syndrome are treated.

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Information from: The News-Star, http://www.thenewsstar.com

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