Monday, March 21, 2016

In Other News: It’s World Down Syndrome Day!

I promised last year that I will start talking about other disorders, apart from autism, this year.

I had wondered what disorder would be the first to grace the “In Other News” column (yes, it is a column on the blog *smile). While deliberating, I met an amazing child with Down syndrome, so much fun to be with, and I knew it had to be Down syndrome. And with today set aside for Down syndrome awareness around the world, it is a good time to do Down syndrome awareness.

First of all, what is Down syndrome?

Down syndrome (DS), also called Trisonomy 21, is a condition in which extra genetic material causes developmental delays, both physically and mentally, in a child. It is a genetic condition caused by the presence of a third copy of chromosome 21. High School Biology teaches us that for a child to be conceived, each parent donates 23 chromosomes each. But then, there can be a situation where a parent donates 2 copies of the 21st chromosome; that child will be born with Down syndrome.

How can you identify an individual with Down syndrome?

Unlike autism, Down syndrome shows on the face, and it is usually obvious from birth. Individuals with DS have flat facial profile, thick epicanthal folds in the corners of their eyes; they have smaller mouth and so they have protruding tongues. People with DS also have low muscle tone. They usually have an overall smaller stature than their peers. And as mentioned earlier Down syndrome causes developmental delays, so children with DS would usually sit, crawl, walk, and talk later than their peers.

Apart from the general symptoms of Down syndrome, there are other challenges that a person with DS may suffer from. Most individuals with DS have learning disabilities; some have challenges with their vision, hearing impairement, challenges with speech as a result of the protruding tongue. A number of them have a hole in the heart, which would need surgery.

                                   
 Photo of Cora Slocum, an American child model with Down syndrome, courtesy www.themighty.com

I remember reading in the dailies in 2009 about a small girl with DS, Victoria, who went to India for surgery; Down Syndrome Foundation Nigeria had helped the family raise the money. I was so excited, thinking the little girl’s DS problem had ended. I later learnt that the surgery would only give her a chance at better survival in life as she had had a hole in her heart, but it does not take away the Down syndrome.

In the past, people with Down syndrome were considered useless, as people with no future; thank God for better understanding people with Down syndrome are living quite successful lives. With special education, they are trained to be independent and to be vocational, hence they can fend for themselves and support their families. Some are able to go to regular schools, and up to college level. And some of them have interest in sports and are doing well in Special Olympics. Recently, I stumbled on a website about an Australian model with DS, Madeline Stuart, who featured at the New York Fashion Week this year.

Down syndrome cannot be prevented or treated, but with early intervention, proper education, appropriate training and good health care, the child can live a successful life. For many individuals with Down syndrome, speech therapy will be needful; vocational skills development is also very important, you want an adult that can take care of himself or herself. Some individuals with Down syndrome have been seen to do well academically, because their parents supported them. So whether it is vocational skill or cognitive development that your child needs, as a parent it is your duty to find the help that will build these skills in your child.

In Nigeria, I am aware that there are people and organizations that provide education and support for individuals with Down syndrome and their families; the Down Syndrome Foundation of Nigeria being top on the list. The Zamarr Institute, Abuja and Eleve Great Minds Special School in Ile-Ife, Osun State are also centers I am aware of that provide education for children with Down syndrome and related disorders.

If you know of any other special school, or regular school anywhere in Nigeria that provide education for children with Down syndrome, please drop the information in the comments or send me an email via adelolaedema@gmail.com. Thank you.


Again let me say Happy World Down Syndrome Day!