Parent Help

Sharing experiences is often a great way to help 'new parents' of a child with Down's syndrome. Below some of our members have shared their experience / story. If you would like to share your story to help others, please email louise@21andco.org.uk


Toby's Story

Having been given a 1:600 chance of having a child with DS after a nuchal scan I was not expecting to have a child with DS, but I guess someone has to be that ‘1’!

In hindsight I think that the scan showed up signs that there was a possibility of Toby having DS as suggestions were made to have a look at ‘the heart’ when the 20 week scan came around. As it happens, Toby does not have any major heart problems so it is unlikely that anything would have shown up to give us any warning at 20 weeks, and I’m very glad that we didn’t know, otherwise I would undoubtedly have made the ‘wrong’ decision for us as a family.

But back in those early days, knowing nothing about DS, I would have assumed that I wouldn’t be able to cope. And indeed, when Toby was born, I was very loath to accept him and to allow myself to love him. My husband had no such qualms and has always adored Toby from day one and accepted him. In some ways, that made it a lot harder for me as I couldn’t share my feelings and came close to a breakdown. Luckily I had a very supportive network of friends and a great Portage worker. My redemption came when I went to some counselling and realised that the issue wasn’t Toby at all, it was my approach to it – there’s a lot more to it than that.....but that’s the gist.

And how could I remain detached for any amount of time from my own child who was developing such a huge personality?

The ‘lights on’ moment was meeting up with an old neighbour who just so happened to also have a child with DS. Through my friendships with her, and the other parents that she introduced me to, I managed to pull myself back together and to finally feel that I could cope. 21 & Co has played a crucial part in this – being able to talk about things in a way that you could never do with anyone who wasn’t in the same situation and finding like minded people who wanted to get the best for their children.

Today Toby is a lively, very popular little boy and everyone knows him. I love him to bits, and he has added so much to our family life. Having never entertained the idea of being involved in any way, shape or form with disability, I now find it hugely rewarding to try to help others and to share the knowledge that I have gained over the years through being a trustee of 21 & Co.