ORRINGTON – Six-year-old Ciarra Boucher took time away from her playing and photography Saturday to help a friend tie his shoe.
It took her a minute, but she tied his shoestrings together in a perfect knot.
The ability to tie is quite an accomplishment for any 6-year-old child, but means even more to Ciarra’s parents because she is a child with Down syndrome.
“Good job, Ciarra,” her mom Michelle Harmon encouraged.
Ciarra’s life is similar to the knot she tied in that it’s bound tightly together by a support system that encompasses the whole community, she said.
“She’s beautiful, she has a personality and the community loves her,” Harmon said. “She’s like me and her dad and she has parts of her sister and brother.
“It [Down syndrome] is a tiny fraction of who my daughter is,” she said.
Down syndrome is usually caused by an error in cell division called nondisjunction. All people with Down syndrome have an extra chromosome and it’s this additional genetic material that affects development.
The mother of three stood watching her youngest play on the playground while her son played soccer at the athletic fields behind her children’s school on Saturday.
The very social Ciarra, a kindergarten pupil at Center Drive School and daughter of Jim Boucher and Harmon, was greeted by warm welcomes from community members who gathered at the school to watch their kids play.
Ciarra took the opportunity to snap a digital photo or two of each person she encountered.
“She’s going to be a photographer when she grows up,” her mother said.
According to her doctor and teacher, Ciarra benefits tremendously from the community and school’s support.
“She’s popular and people gravitate towards her,” special education teacher Deb Ziemer said about Ciarra. “She has great friends that are supportive and helpful.”
Ciarra is mainstreamed in a regular kindergarten classroom but is pulled out for individualized lessons and has a full-time educational technician with her. She has made tremendous strides since beginning school, Ziemer said.
“I will never forget when Ciarra took home her first word book that she created from words she learned,” she said. “Her mom called me in tears.”
Over the summer, the school allowed Ziemer to attend a Down syndrome conference in Washington, D.C., with Ciarra and her mom, which is a perfect example of support.
Ciarra’s pediatrician, Dr. Leo Leonidas of Eastern Maine Medical Center, describes her as a “miracle baby” because her mental abilities are only slightly delayed for a child with Down syndrome.
“She’s almost normal for cognitive recognition,” he said. “To me this is a miracle. It’s very unusual. She was tying her own shoes at 5 years. Many normal kids of 5 years cannot do that.”
Leonidas, who is called “Dr. Leo” by his younger patients, has a theory behind Ciarra’s amazing performance.
“What it demonstrates is that the brain, a normal brain or the brain of a child with Down syndrome, can be stimulated by parents,” he said.
Support from parents, siblings, the community and school go far to encourage all children to develop into healthy young adults, the doctor said.
Another big advantage for Ciarra is having a big brother and sister to emulate.
More than 350,000 people in the United States are living with Down syndrome. To help fund research for the disease, Ciarra and her family will participate in the annual Down syndrome Buddy Walk, set for 1-4 p.m. Saturday at Cascade Park in Bangor.
One thing Harmon wants is for people to look past her daughter’s Down syndrome and see the child beneath.
“Don’t prejudge her, let her make her own impression,” she said. “Don’t assume anything. Other than speech, her delays are very minimal.”
Harmon said she knows Ciarra will face challenges in the future but for now is enjoying the fellowship and community she’s found in Orrington.
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