My name is Aoife and I live in Edinburgh with my husband Keith and our three children. Dillon, 7, Ciara,6, and Hugo 2. When Ciara was born we discovered she has Down Syndrome. It was a huge shock and took time to adjust to but what really happened was our perspective on life shifted. She has taught us patience, perseverance, and that happiness is a choice. We choose to see her disability as a positive and marvel at her ability to learn and thrive in the face of adversity. We are so proud of her achievements and enthusiasm for life!
On the 21st March each year we celebrate World Down Syndrome day to encourage discussion and positivity around the people who live with it. We wear crazy socks to draw attention to our celebration. (Chromosomes look like socks under a microscope!)
Here are some answers to questions you may have!
What is Down Syndrome?
Down Syndrome is a genetic condition which presents with a range of characteristics often including a learning disability, low muscle tone and some common physical features.
Why does it happen?
Most people have a pair of each chromosome in their genetic make up- people with Down Syndrome have one extra chromosome on chromosome 21. It occurs randomly most of the time. The mother has not done anything to cause this to happen. It occurs at conception.
Is it only older mothers who have children with Down Syndrome?
No! Another myth! Over half of babies born with Down Syndrome are born to mothers under 35.
Why is it called Down Syndrome?
The doctor who first classified it as a genetic Syndrome was called Dr John Langdon Down.. lots of us wish he had been called Dr John Up or something else more positive sounding!
Are they all the same?
No absolutely not! Each and every person with Down Syndrome is completely different. They have personalities, feelings, dreams, dislikes, just like you they experience a full range of emotions. It’s a myth that they are always happy.. yes they may have a positive outlook but they certainly have mood swings, bad days and feel hurt just like everyone else.
Is life with a child with Down Syndrome difficult?
Parenting is difficult. I can honestly say that my two other children who are typical in their development are way more challenging to parent!
How do I communicate with someone with Down Syndrome?
Speak as you would but slow it down a little and wait a little longer for a response. If the person uses signing then please attempt to copy and join them. If the person doesn’t respond at all then it’s fine to fill in the gaps in conversation and most importantly please remember a smile can say a thousand words!
It will instantly put someone with a learning disability at ease in a world where people can often be unkind.
Is language important around Down Syndrome?
Yes. The language we use has an impact on the people with Down Syndrome and their families. The use of words like retard, mongol, a downs child are all extremely offensive but sadly still commonly used. We use person first language so we say a person with Down Syndrome, as they are people first before their Syndrome.
Awareness is so important to people and families living with Down Syndrome. Until quite recently they were locked away, hidden from society and for this reason I choose to shout their worth! I run Ciara’s Instagram page where I share snippets of daily life and her many escapades. She has recently been signed to Zebedee modelling agency-the more faces of Down Syndrome we see in the media the better! They need to be visibly employed with the right support and training they can be conscientious, hard working and enthusiastic workers. People need to stop feeling sorry for people with Down Syndrome and start integrating and supporting them to be the productive citizens they want to be.
I challenge you to see the girl, not the disability.
You can follow Ciara on Instagram
Author credit: Aoife Burns