Talk at Assembly 9th February 2010
Down syndrome Awareness
Morning boys
It is my privilege to talk to you briefly about Down syndrome this morning. I know a little bit about Down syndrome because I started reading and learning 4 years ago when my son Thomas was born. Thomas has Down syndrome. Some of you may have seen him or know someone who has a family member with Down syndrome and some of you may have absolutely no idea what it means. The purpose of my talk is therefore to raise awareness about this genetic uniqueness.
I refer to Down syndrome as a genetic uniqueness as opposed to an abnormality for two reasons: firstly because I believe that as human beings we are all unique and secondly because in many ways we are all trying to respect and appreciate our differences so to create more love and peace and improve the quality of our lives.
People with DS have an extra 21st chromosome in addition to the normal pair. This genetic expression is the medical diagnosis. You can sometimes recognise that someone has DS by their facial features, their hands and muscle tone.
Many children born with DS have serious medical and cognitive difficulties.
Approximately one in every 800 births results in a child with DS. This would be significantly higher if there were fewer abortions. Some prospective parents simply do not want to bring a child with DS into the world so they perform some extremely expensive and dangerous tests to find out if their child could have DS. The problem with the test is that it is not very accurate and there is a very high risk that if the mother has the test she will abort her baby even if the baby did not have DS.
In the developed world, nine out of every ten unborn babies suspected of having DS are terminated. Each year, thousands of babies are aborted by their parents who decide that they do not want to take the risk of having a child with DS. Unfortunately many of these abortions were to perfectly normal babies. These parents are the unlucky ones as today, if you bring a child with DS into the world, congratulations are in order.
DS was discovered only last century and the cause is unknown.
Through awareness campaigns such as this and the hard work of doctors and affected parents striving to understand and educate the public much has changed during the last 50 years.
If Thomas was born 50 years ago, his future would have been bleak. Most parents were completely ashamed by what they thought was a curse or a failure that they would put their children in to a mental institution and walk away. Little did they realise that their child was quite capable of living a normal life. Parents and the public simply turned their backs on the problem, walked away with their heads down and didn’t look back.
Today, the situation is completely different. Today children with DS are included in the normal school system, they have friends they play games they love their family and their families love them. I’ve seen a sixteen year-old girl with DS complete a page of grade 10 algebra without fault. I’ve seen a boy with DS play his violin at Grade 8 level. I’ve seen DS children swim like dolphins and the list of achievements goes on and on. It is so difficult to understand why in the past children with DS weren’t given a chance to show what they can do and worse, why they were denied the love and care that they deserved.
I believe that we are all created for a special purpose and that includes children with DS and other genetic uniqueness’. Thomas has a special purpose. He is a beautiful child who wants to be loved and who gives love and has big dreams about his future just like you and me.
He is a happy boy who likes to give and receive hugs. He likes to read books and ride his bike. He likes to run on the field and play hockey. He likes to swim and take showers. He likes to sing and dance and he loves music. He plays the recorder, harmonica and the piano. When he’s finished watching his favourite DVD, he is passionate about exploring the outdoors.
He doesn’t have many dislikes He doesn’t like to hear people shouting or loud noises and sometimes he’s a little scared around large crowds. He doesn’t like chocolate and doesn’t like to sleep-in in the mornings!
He doesn’t talk yet so he communicates with touch, sounds and actions.
When you were born, it was possibly one of the happiest days of your parents’ lives. They probably wondered if you would become a doctor, a lawyer, an actuary or an engineer one day. They wondered if you would make the A team squad. I also wonder what Thomas will become one day. For now, it is important that we love him. It is important that his friends respect him and it is important that we are all aware of how special people with DS are in society.
World Down syndrome day is celebrated on the 21st March. With the support of The Presidents Award, we will soon have an opportunity to raise funds towards assisting children with DS in our community. I encourage you to join in and support awareness in our community.
I thank you for this opportunity and leave you with a few quotations from people with DS:
• "I hope to have as many friends as all the stars in the sky. I think that I am getting very close to my wish."
• "Don't ever prejudge the limits of our abilities. We definitely will surprise you and sometimes we even surprise ourselves!"
• "Accept us for who we are -- without any reservations. With your help and encouragement, we can become responsible and contributing members of our communities."
• "The doctor who discovered Down syndrome many years ago was Dr. John Langdon Down. I really wish that his name was Dr. Up...
• "Please don't ignore us, or look the other way when we approach you. Doing that to us will not make us or our disability go away. We didn't have a choice about our disability, but you definitely have a choice in how you accept us!"
• “I love my genes!”
• "I LOVE MY LIFE!"
Thank you.
