March 21 marks Down Syndrome Day
By Umm Sara Felemban We are celebrating Down Syndrome Day on March 21. Down syndrome or Down’s syndrome, also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. The physical features and medical problems associated with Down syndrome can vary widely from child to child. While some children with Down syndrome need a lot of medical attention, others lead healthy lives.
Although Down syndrome can’t be prevented, it can be detected before a child is born. The health problems that may go along with DS can be treated, and many resources are available to help children and their families who are living with the condition.
I have pondered on the words “special needs” for some time. It has replaced the previous many descriptions of children and adults with a wide range of disabilities. We are all too familiar with the terms “mentally handicapped” and indeed “physically handicapped.”
The emphasis is on the actual “handicap.” I have no problem with these terms but a different response occurs when we hear “mentally retarded.” For me, it is a harsh, unpleasant and unkind word, perhaps indicating that the individual has indeed stunted development and is outside the realm of “normal.” Hence the reason most people are happy that in general we hear more and more about individuals having “special needs.”
We all seem to agree on that term because it is soft, kind and does not leave anyone wondering about what it really implies! It covers many different disabilities under its umbrella. I personally like it because I believe we all have special needs in one way or another and the different levels of needs that an individual has, places them in an appropriate category.
One thing for certain is that as human beings, we need a purpose in life, a feeling of being needed, a need to be loved and cared for (from infant to adult) and we need to reach our potential. Down syndrome children and adults have the same needs and rights.
Now let me introduce you to my daughter Sara who has Down syndrome. Another year has passed and she has reached her 11th year of celebrating life as it was destined for her. She is a typical active 11-year-old and is a truly valued member of our family. Her sister Lara is 13-years-old and her brother Riyad is 12.
So what are Sara’s special needs? The obvious ones are that she is not as independent as an 11-year-old who does not have Down syndrome.
Educationally, her needs and achievements at this stage are different from that of her siblings at the same age but she approaches learning in much the same way. Sara takes pride in her achievements and looks at a new challenge with energy. She does not give up on a new task if it appears a little more difficult. She speaks Arabic and English as I am English-speaking and her father speaks Arabic.
She values her friendships at school (attending the Help Center in Jeddah since she was four- months-old) and has the respect and love for her teachers that many of our young people could learn from.
Her needs are changing like all little girls on the road to being a teen but she has an ability to take things in her stride and therefore remains happy even in the face of adversity.
Of course we all know that a child will learn to love, if loved, learn to criticize if criticized but Sara’s ability to love her family unconditionally could never be doubted and never be surpassed as she has brought happiness, love and patience to all of us.
Our thanks to you, dear Sara.