Friday, 30 March 2012

You Asked?

Could look at that face all day!
The Questions

Since having Felix I've had a few people make comments and ask questions such as:

"He only looks like he has Down Syndrome a little bit", "How badly does he have Down Syndrome?" ,"He suffers from Down Syndrome" and the real doozy, "If you could click your fingers and take away his Down Syndrome would you?"

I realise that these sort of comments are generally made by people who have never had anything to do with people with Down Syndrome and aren't meant to be rude or confronting to parents of children with Down Syndrome, but I thought I'd take this opportunity to explain my responses to these sort of comments and maybe shed some light to those of you who have been wondering the same things.

Studying a piece of bark
He only looks like he has Down Syndrome a little bit

Firstly, you can't have Down Syndrome 'a little bit'. Either you have the extra chromosome or you don't. Felix has the extra 21st chromosome in every cell in his body. The only exception to this is the very small percent of people who have Mosaic Down Syndrome (2-3%) where the 21st chromosome is only present in some cells and not all of them. Even with Mosaicism, the person is still considered as having Down Syndrome.

The physical characteristics of Down Syndrome vary from person to person. When Felix was very small a lot of people's response was surprise because to them he didn't 'look' like he had Down Syndrome. As he is getting older, people are recognising those characteristics more and more. If the physical attributes of Down Syndrome are very apparent, it doesn't mean that the person in question has Down Syndrome 'more' than someone else. If you are looking for the 'Down Syndrome' you will see it, but try looking at other members of that person's family. I bet they look very much like them.

Our poor cat!
How badly does he have Down Syndrome?

I assume by this question people are asking how severely Felix's development is affected because he has Down Syndrome.

This is not really a question that is easy to answer, especially as he is only 18 months old. Down Syndrome is classed as a mild to moderate disability. People with Down Syndrome are independent thinkers, capable of learning and developing. At what speed they learn depends on the individual. Some people with Down Syndrome will pick up things in certain areas very quickly whereas others will find things more of a struggle.

Think of it in the same way as you and I. I never understood Maths at school. It baffled me, and no matter how hard my Dad tried to explain it to me (he tried so very hard to help me with my homework), I never really got much beyond the basics. Our boys, on the other hand, excel in Maths. They have won awards and are regularly top of their classes. Give me an English essay to write though, and I'll ace it!

Just like you and I, people with Down Syndrome will have their strengths and weaknesses. As Felix grows and develops it will become clear what he is really good at and what he will need extra help with.

There are a few people with Down Syndrome I know who would be classed as having a severe disability. However, all of those I know also have other issues such as Autism and other mental and physical problems. Their additional needs are not due to Down Syndrome alone. One little girl who comes to mind has so many health issues but still gives her family so much love and happiness. They adore her and it makes me so happy every time I hear she has done something new.

He Suffers from Down Syndrome

'Suffering' is never the correct word to use in reference to a person with Down Syndrome. People are not 'suffering' from Down Syndrome.  They may 'suffer' from associated health issues which are more prevalent in people with Down Syndrome, but the extra chromosome itself doesn't cause them to 'suffer'

Being a Clown!
If you could click your fingers and take away his Down Syndrome would you?

I can only speak for myself and my family, but the emphatic answer to that question has always and will always be 'No'.

To us, Felix is who he is. One of the reasons why Felix is the gorgeous, funny, lovable little boy he is, is because he has Down Syndrome. One of the reasons why we can enjoy watching him learn new things and get so excited about them is because he has Down Syndrome. It is only a part of who he is, but it is a special part. If Felix didn't have Down Syndrome anymore, he wouldn't be Felix!

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