What it's really like to have a child with Down's syndrome

Wed, 03/22/2017 - 12:01 -- siteadmin

My child Elodie is a daughter, sister, granddaughter and friend, she is funny, cheeky and strong-willed – she is not defined by her Down's syndrome and we don't define her by it.

But a label can be a very hard thing for some people to see past and because of the sheer amount of appointments, paperwork and work we have to do to encourage her it is sometimes hard to see her for her and not the label.

Tuesday is World Down's Syndrome Awareness Day, when we get to celebrate our amazing children on a bigger stage and raise more awareness.

To mark the event there will be a flash mob on Lemon Quay at 1pm on Saturday when the people with the condition, their family and friends will be out in force.

So what is it really like having a child with Down's Syndrome?

Well it's extremely difficult at times and you have an endless diary of appointments for physiotherapy, portage developmental play, heart check ups and all sorts of other things and worry about their future, but it's pretty damn amazing – actually Elodie is pretty damn amazing.

There are days I could cry because I hear other parents in the DS community who struggle to get basic rights for their children – access to a good school, disability living allowance and general support and it feels like I am just waiting for the time I have to stand up for my child.

And other days I could cry with joy because I see just how far Elodie has come before she has even turned two. She is climbing the stairs (a heart stopping moment to discover her up several steps) and pulling herself up and walking with support, she is signing a bit and saying a few words and definitely getting her point across.

She is also a total thief – for she steals the hearts of anyone who she meets! No one seems to see the condition first, they see her beaming cheeky smile.

She is stubborn, loud, determined and strong – in fact she is exactly like her big sister who does not have Down's Syndrome and whom she absolutely adores.

When doctors told me my two-hour old baby had Down's Syndrome my world fell apart because there was just talk of all the problems she could have because of it and what she wouldn't be able to do –but as she nears her second birthday I cannot believe I feared the worst.

I remember the things that people kept saying at the beginning - children with Down's Syndrome are always happy, they will take longer to do things like walk and talk, they may not cope in mainstream school - it's not all true.

But having a child with DS is nothing like I imagined – it is a gift.

Someone said having a child with Down's Syndrome will teach you patience – though I am yet to learn that one. Although I have had to wait longer for Elodie's achievements, I still sometimes wish she would just get on with it!

But every milestone is celebrated that extra little bit – even Clara cheers when Elodie signs, or pulls herself up, or stacks building blocks. My camera works harder because I want to record all the amazing things she is doing that I took a bit for granted with her sister.

Another mum said her son "has shown us he will reach his full potential in his own.. The milestones will definitely come at his own pace, but we have no doubt that he will achieve everything and more".

That is certainly true – Despite extra effort to work on various activities, Elodie showed little interest or inclination to do them until one day she started pulling herself up to standing, started crawling, started signing. I am laying good foundations, but she will do them when she is good and ready.

I initially found it hard not to compare her to her older sister – looking at Clara's milestones – she walked before she was one, talked non stop from before that and was feeding herself. I constantly felt frustrated and disappointed.

But now I have a greater acceptance of it – she is Elodie, not Clara, not other children and she will do what she wants, when she wants!

Don't get me wrong, it's certainly not all rainbows. Elodie was on a feeding tube for the first few months, had heart surgery at three months old and has suffered chest infection after chest infection and pneumonia and carrying around a two year old because she cannot walk by herself can be exhausting.

She also has a great set of lungs on her and finds its hard to settle some nights, so being up cuddling her at 4am is not uncommon.

But the strength of the DS community has been truly amazing. Here in Cornwall there is an incredibly strong group for families of children with Down's Syndrome.

I first met some of the other parents when Elodie was four weeks old. It proved vital for my mental wellbeing in those first few months to have people I could talk to without having to explain myself.

I have made some wonderful new friendships and can get all kinds of guidance from money matters to Makaton signs to what support we can get and what equipment is good to help and support our children. We celebrate together, we give a hug when one is needed.

It is also very active in spreading the message about inclusion. After producing a pictoral book of children in Cornwall with Down's Syndrome doing every day things to give to new mums, the Cornwall Down Syndrome Support Group has created a Going to School book, with photos of children going about a normal school day.

It is being given to all pre-school children in the county through Book Start and it has been given the backing of a host of celebrities.

On Tuesday, the actual World Down Syndrome Day many of us will be wearing odd socks on March 21 – to mark the face Down's Syndrome is a trisomy of the 21st pair of chromosomes. That's the secret ingredient that makes our children more awesome.

Down's Syndrome is not an illness or a disease, it is a genetic condition which occurs because a baby's cells contain an extra chromosome – 47 instead of the usual 46.

It can cause learning and development delays, but most children with Down syndrome will walk and talk, read and write, go to mainstream school and look forward to a semi-independent adult life.

On average two babies are born with Down's syndrome each day in the UK and one in every 1,000 babies will have the condition.

By Ginette Davies

Source: Cornwall Live



Add new comment

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.