Their hope is that society will embrace not only acceptance, but inclusion

To read on Ventura County Star website:

Local parents celebrate joys a child with Down syndrome brings

By Jeremy Foster, Special to The Star  March 16, 2016

acceptance

DAVID YAMAMOTO/SPECIAL TO THE STAR Reece Robinson, 11, enjoys rolling on his belly on an exercise ball with his father, Scott, who is holding his feet to help him balance at their home in Ventura. Because of his son’s low muscle tone — commonly associated with Down syndrome — Robinson works with Reece daily to strengthen the boy’s muscles.

Before Denise Bell’s son Jaxon was born, the Simi Valley woman hoped his future would consist of college, a career and marriage.

She still had this hope when, at 19 weeks into her pregnancy, she learned her son would be born with Down syndrome.

Jaxon is now 3, and Bell’s hope has not diminished.

« People with Down syndrome and people without are more alike than they are different, » Bell said. « They will crawl and then walk and talk. They will learn at school. They will play sports. The only difference is they do some things at a slower pace. »

That’s a message Bell will share on Sunday in Thousand Oaks, where she expects more than 100 people will gather at Conejo Creek North Park to celebrate World Down Syndrome Day, which aims to raise public awareness of the genetic disorder.

Bell said the gathering started four years ago with just 20 people.

« We realized there are a lot of families in the Conejo Valley who have children with Down syndrome and have no one to celebrate their children with, » she explained.

Thousand Oaks resident Rebecca Garcia, whose 3-year-old daughter Nayely has Down syndrome, helps organize the annual event. Her passion is to raise awareness and educate people, especially when it comes to dispelling misconceptions.

« It’s not a disease, and it’s not contagious, » Garcia said. « It’s a syndrome. »

Approximately 400,000 people in the United States have Down syndrome, which occurs when an individual has a full or partial extra copy of chromosome 21, according to the National Down Syndrome Society. One in every 691 babies in the United States is born with it, or about 6,000 babies each year. It is often accompanied by physical and intellectual challenges, and those affected are significantly predisposed to certain medical conditions, especially a heart defect, which occurs about half of all cases.

Scott and Judy Robinson, of Ventura, have two children with Down syndrome: 11-year-old Reece and 5-year-old Ryan, a child they adopted from Bulgaria in 2012 to provide him with a better life.

Judy Robinson said she wants parents to know that while the journey can be bumpy, it can also be beautiful.

« The first words we heard from people were ‘I’m sorry,' » she said. « We weren’t sorry. We had to get used to a new life. »

Garcia was 14 weeks pregnant when she heard the diagnosis.

« I cried after I got the news, » said Garcia, who remembers calling her husband Edgar and hearing him ask her, « What are we going to do? »

« He always regrets asking that because he knows what a beautiful baby she is, » Garcia said. « He was just scared. »

Garcia said she shared her husband’s fears, not knowing how her life and the life of her child would change.

Nayely was born with an enlargement in her heart chamber, which closed with time. She also underwent surgery for pyloric stenosis, a rare condition that stops food movement from the stomach to the small intestine.

Jaxon required open-heart surgery.

Bell and Garcia encourage parents of children with Down syndrome to enroll them in speech and physical therapy as early as possible.

« Everything we do for them, every therapy, every classroom we enroll them in, every teacher we find them, every accommodation — we have to prove why it’s needed, » Bell said.

This can be exhausting, she added, which is why she and Garcia want to start support groups and parenting classes in the Conejo Valley for parents of children with Down syndrome.

They also encourage people who are unfamiliar with the syndrome to ask questions, and their hope is that society will embrace not only acceptance, but inclusion.

Once a month in her backyard, Bell hosts a « ‘We Get It’ Barbecue » where people affected by Down syndrome can support each other and float ideas on how to raise awareness.

« I want other parents to know they’re not alone, » Bell said. « We’re a family. »

« That extra chromosome bonds us, » said Bell.

Accepting the diagnosis of Down syndrome is difficult, but over time this struggle gives way to abundant love, Bell said.

« You grieve about the child you thought you were having and accept and love the child you are having, » said Bell, who has two other children in their early 20s.

The Robinsons say their lives can be overwhelming at times, but they figure that’s true for all parents.

« All parents have challenges with their children, but it’s just that ours continue for a longer time because of the learning curve, » said Scott Robinson, who homeschools the kids while his wife works outside the home.

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