Down syndrome children and their ‘loving, limitless potential’
When Andre and Shiquita Carr learned there was a higher risk their second child would be born with Down syndrome, the first thing they did was get to researching.
The statistics they uncovered were startling.
Nearly 90 percent of people who learn they are going to have a child with Down syndrome decide to terminate the pregnancy.
“I was really upset when I heard that statistic,” Mrs Carr explained. “For us we had miscarried before and had been seeing a specialist because my previous two pregnancies were difficult ones.
“The doctors said we could have a couple of weeks to decide what we wanted to do. We chose not to have [further testing with] the amniocentesis because we didn’t want to risk loosing another child and wouldn’t have terminated the pregnancy anyway.”
When their son, Asa, was born the medical team examined him carefully, but didn’t find him to have any typical characteristics of Down syndrome.
But days later after further blood work had been done, it was confirmed Asa did have the disorder.
Mr Carr said raising a five-year-old boy with Down syndrome has come with some challenges, but the rewards far outweight that.
“Asa lights up any room when he walks into it. Any event we go to at church or wherever, he is almost like a celebrity there because everyone recognises him and gets excited to see him.
“Children with Down syndrome are so loving and the potential for what they can do is limitless,” he continued.
“Just type ‘Down syndrome kids’ into YouTube and you can see they do all the things typically developing children do.”
Mrs Carr said one of the challenges for children with Down syndrome is they develop at a slower pace.
“They typically crawl, sit up and walk later than other children, but they eventually are able to learn a lot of the same things their peers are able to,” she explained.
The Carr’s were just one of the families who shared their experience with The Royal Gazette in honour of today’s World Down Syndrome Day.
The Bermuda Down Sydrome Organisation, which was formed by Bermudian Selina Edwards in 2008, will be hosting a few events today to raise awareness about the chromosomal disorder.
In addition to waving to morning commuters coming into Hamilton, Ms Edwards — whose six-year-old son Trudell was born with Down syndrome — will be on hand to answer questions in Washington Mall from 10am until 4pm.
Ms Edwards founded the group after realising there was no place for families of children with Down syndrome to turn to for encouragement and support. There are currently six active families involved in the group and Ms Edwards is looking to raise its profile further.
“I set the group up to give families information and hope. I also wanted to make the general public aware that these kids can be just as normal and do the same things as everyone else.
“In America and elsewhere in the world they have instances where children with Down syndrome have gone on to pursue higher education, live on their own or in living support units, get jobs and even go as far as getting married and raising families.
“I would like to see people open up to things like this for the children here and give them the opportunity to reach for their highest potential.”
Bermudian Paul Ray is an example of how far a person with Down syndrome can go with the right support and encouragement.
Mr Ray went on to excel in athletics, winning two bronze medals for Bermuda at the Special Olympics, including one for golf in 2011.
His sister Donna Pink said growing up their father never treated ‘Paulie’ any different from herself or their eldest sister Sharon Davis.
“When he was 12 he was sent to a school for Down syndrome children in Lancaster, Massachusetts. He learned a lot of life skills there. He reads, writes and is very independent.
“Our father’s theory was you get what you expect from children, so if you expect great things then that’s what will be.”
Akilah Dill, the mother of Jahziah Douglas-Dill, who is turning three next month, admitted that it came as a shock when she learned her son had Down syndrome.
“We didn’t expect it,” she said. “It has come with its ups and downs, but I can bear it.
“The biggest challenge has been trying to find a behavioural therapist who specialises in working with children with Down syndrome. But the reward is that he is a very happy child. Very seldom is he grumpy or miserable.”
Jahziah’s grandmother, Eual Douglas, said it’s been wonderful to discover what’s possible for children with the disorder. It’s given her family hope.
“I presently have a daughter who is away at university and she called me one day all excited because there was a girl with Down syndrome at her school,” Ms Douglas said.
“So that gave us a ray of hope that my grandson, if we push him enough and he is really determined, can do the same things as other children.”
The Bermuda Down Syndrome Organisation has a Facebook page for anyone looking for more information about the support group.
Down syndrome, also known as trisomy 21, is described as a genetic disorder caused by the presence of all or part of a third copy of chromosome 21.
Individuals with the disorder normally have mild to moderate intellectual disability, physical growth delays and intellectual disability. They can also suffer poor immune function or other health complications; and experience developmental milestones, like walking and talking, at a later age.
Occurring in about one in 830 births each year, it is named after British doctor John Langdon Down, considered the first to fully describe the syndrome in 1866.
World Down Syndrome Day is a global awareness day, which has been celebrated for the past nine years and was officially observed by the United Nations in 2012.
