I am a member of various online forums and always make myself available to people for questioning.  I am not shy… I don’t think there should ever be any questions that are out-of-bounds and I am pretty sure that the people who know me would agree that I am open to talking about anything at all.  On these forums it is the subject of Seren, her diagnosis and our lives with her that come under scrutiny.  I am always amazed at the utter rubbish that people spout about Down’s syndrome in the forums, so I thought it might be useful for people to have access to us, a real life case study.  There are still so many old stereotypes batted round, and there seems to be a total lack of knowledge about what it is like to have a child with Down’s syndrome in this day and age, so I encourage questions and respond with facts.  True, they are facts relating to us and every family is different, every child (with or without Down’s syndrome) is different, but I can only comment on my own life and what is going on with us so it will have to do!!

Anyway… I get lots of questions on these forums… I get them from families who are going through prenatal testing and want to know more about my life with Seren and I get general questions about what health implications there can be or what developmental differences I have noticed or how I feel about “burdening” society (!!! I will save that one for another day!!)… The other day I got a really interesting one.  A lady asked me “do you ever really get over the fact that she has Down’s syndrome, bearing in mind you see it every time you look at her?”.  I realised that I don’t see it.  I don’t think I ever really have.

 

Seren 18 months

 

Seren 18 months

 

If I sit and look for the “features” of Down’s syndrome, then I can see those: her beautiful almond shaped eyes, her cute flattened bridge of the nose, her unique palmar crease on her hands, her lovely stumpy little hands and fingers, the freaky sandal gap in her toes (!!), her little low set ears and her epicanthic fold on her eyes… I can see them all.  They are just bits of Seren though.  Since the day she was born, when I look at Seren, I see Seren.  My little girl.

Seren 18 months

 

Seren 18 months

I don’t see Down’s syndrome when I look at her any more than a mother can “see” autism when she looks at her child.  I know that might sound daft because even random strangers can see Seren has Down’s syndrome yet wouldn’t be able to see a child’s diagnosis of autism, but that wasn’t the question was it?  The question was for me – “do YOU ever get over the fact that she has Down’s syndrome, bearing in mind YOU see it every time YOU look at her”.  So the answer is that there was nothing for me to get over… I see Seren and always have done.

Seren 18 months

 

Seren 18 months

The fact that Seren has Down’s syndrome plays a part in our lives that is so small and insignificant that often it is the other bits that “remind” me.  I think most parents of a child with Down’s syndrome would say its the appointments that remind us our kids are a bit different… physio, speech & language, OT, SN teachers, hearing tests, eye tests, annual blood tests, developmental checks… but do you know what?  A child doesn’t have to have Down’s syndrome to need some extra help so its just a question of accepting that that is what Seren needs, so that is what she will get.  I would access services for Ava if she needed them, no questions asked.  So I will do anything in my power to get the best for Seren and help her in any way I can.  The fact that it is because she has Down’s syndrome is irrelevant to us.

Seren 18 months

Seren 18 months

One day, I hope that the rest of the world will get over judging people by the way they look.  It’s not just Down’s syndrome though is it?  There is a person underneath every single medical diagnosis, genetic difference, scar, disfigurement and physical disability – wouldn’t it be lovely if we could get to know the person before we make assumptions based on the looks?  Wouldn’t it be even more lovely if these people could be regarded as equals, regardless of the help they need to achieve the things that we take for granted.  After all, who has the harder task in life?  Judging from the last 18 months with Seren, I can assure you that she has to work a whole lot harder to hit milestones that other children sail through.  She will always have to work harder to prove herself, to achieve things, to be accepted.

Seren 18 months

Seren 18 months

So this is why I would like you all to have a good think before referring to a baby, child or adults as BEING Down’s… it is offensive, plain and simple.  People HAVE Down’s syndrome… they have a recognised medical condition, they are human beings like me and like you.  Seren is not a “Down’s baby” or “Down’s girl”, she is a little girl who just happens to have Down’s syndrome.  Anyone who refers to my daughter as BEING Down’s is still judging a book by its cover.  Take a minute to see my little girl first please… my lovely cheeky, feisty little tom boy who is going to do her level best (with our help) to contribute to society in her own way and live a very good and worthwhile life.  See her like I see her.  I only see Seren.

Seren 18 months