Welcome and congratulations if you have a new baby or a baby on the way who has Down’s syndrome. We appreciate this will be an emotional time and you may have huge feelings and many questions. Each family circumstance is unique, and how you feel is unique as you embark on this new and perhaps unexpected journey. It can be a real rollercoaster and it is both understandable and natural to be experiencing all sorts of emotions – sometimes from hour to hour or minute to minute. Making space for your feelings and finding ways to support yourself and loved ones through this time is the kindest and most helpful thing you can do. All of us who have children with Down’s syndrome remember those early days and we hope the resources on this page will be useful to you.
Our top tips would be to:
Find accurate and balanced information, we provide links here to trusted sources. Information on the reality of bringing up a child with Down’s syndrome may be different to your current expectations or what you have been told by family, friends and even medical professionals.
Surround yourself with as much emotional, practical and professional support as you can. Often our babies are well provided for with all sorts of arrangements for assessments, therapy and medical support when they are little, but parents’ needs can get overlooked. As well as from family members and friends, there are lots of ways to access support and you will find what works best for you. You may wish to talk to someone locally who has a child with Down’s syndrome and we can certainly facilitate this if you would find it helpful. Press the contact us button. There is a helpline at the Down’s Syndrome Association for questions and general support and advice.
If you have not done so already, we would recommend starting off with a cup of tea and a biscuit and spending an hour or two looking at the excellent resources on the Down’s Syndrome Association (DSA) website. They have a new parents’ pack which includes well written and useful information for new parents, they also have reliable information about screening and prenatal testing.
Down’s Syndrome Association (DSA) link
DSA Helpline Number
0333 1212300 (10am-4pm)
This Way Up is a local parent run group that meets informally for coffee, chats and mutual support. It is there for new parents and for those with younger children with Down’s Syndrome.
There are lots of inspiring parent websites and blogs too, including this from a lovely former member of SGDSG, Krista Ewart now based in Canada and the wonderful Hayley Goleniowska founder of Down’s Side Up and co-author of the book “Natty I love you”, which is a great resource for young siblings.
Also for some inspiration on the potential of young children with Down’s Syndrome check out Ollie and Cameron on Facebook.
Sometimes we can benefit from professional support for our emotions and to help us process what we are experiencing. Find a reputable counsellor on the BACP website.
If you have feelings of not coping, the Samaritans are always available to talk and support, their website provides some good resources and advice.
Call them for free 24 hours a day on 116 123
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