If you’ve discovered your baby has Down syndrome, you may be worried and afraid, unsure of your future holds and what life will look like. At Down Syndrome UK we understand, and we are here for you; you are not alone.
We are parents who understand the reality of parenting a child or young person with Down syndrome, and we know that while there may be challenges – as there are for any parent – we also know and are proud to say that our children and young people are loved, valued members of our families and communities who we would not be without. So, do please take a read of our stories to see that while many of us had worries and concerns, we now lead happy and ordinary lives.
Positive about Down syndrome (PADS) is a Down syndrome UK (DSUK) initiative run by parents for parents and parents-to-be. When a parent first gets a diagnosis that their baby has Down syndrome it can be, for some, a very daunting feeling. Our vision is to be the first port of call for any expectant or new parent with a diagnosis of Down syndrome to ensure they get all the information they need and deserve.
We provide a holistic, non-judgemental environment with real life stories and experiences from other parents and literature to maternity units.
Remember, no emotion is a wrong emotion, no question is a silly question
If you’ve discovered your baby has Down syndrome, you may be worried and afraid, unsure of your future and what life will look like. At DSUK Positive about Down syndrome we understand, and we are here for you; you are not alone.
Please take a look at our fabulous book #NobodyToldMe the truth about Down syndrome – full of photos and stories, written by people with Down syndrome, their families and friends.
There are many outdated perceptions and myths around Down syndrome, one being that ‘babies with Down syndrome can’t breastfeed’.
We share this guide to give you and your baby the best chance possible to breastfeed successfully. We want to not only educate and empower new and expectant mums, but also the medical professionals who are supporting within the community.
We hope this guide will provide you with all the information you need to enjoy a successful breastfeeding relationship with your baby.
We are parents who understand the reality of parenting a child or young person with Down syndrome, and we know that whilst there may be challenges – as there are for any parent – we also know and are proud to say that our children and young people are loved, valued members of our families and communities who we would not be without. So, do please take a read of our stories to see that whilst many of us had worries and concerns, we now lead happy and ordinary lives.
We are passionate about ensuring our parents have access to the best information, resources and services.
Please know that we are here for you, as and when you need us.
When you are ready, we run Makaton training sessions, POPS – our online physiotherapy sessions which are suitable from new born, PEGS – our early development groups suitable from approx 6 months and lots of informal information sharing sessions.
Please join our closed group where you can ask any questions of other parents and we also have experts on hand to offer advice.
We are passionate about ensuring our parents have access to the best information, resources and services.
Please know that we are here for you, as and when you need us.
When you are ready, we run Makaton training sessions, POPS – our online physiotherapy sessions which are suitable from new born, PEGS – our early development groups suitable from approx 6 months and lots of informal information sharing sessions.
Please join our closed group where you can ask any questions of other parents and we also have experts on hand to offer advice.
As parents we know how easy it is to spend time reinventing the wheel. We hope you will find these recommendations helpful and inspiring!
These are resources kindly recommended by our families. DSUK does not financially benefit from these recommendations; we are sharing to hopefully save you time!
We have an abundance of information about having a baby with Down syndrome – from breastfeeding to support you’ll be entitled to.
Grab a cuppa and have a look through. If anything is missing, we’d love to hear from you so we can signpost you to the information you’re after if we can.
TedTalk with CEO of DSUK, Nicola Enoch
However you are feeling about baby having Down syndrome, we are here for you! We understand the everyday reality of being mum or dad to a child with Down syndrome and know that our lives are so much more than a diagnosis, there is a good deal to celebrate. We too, have experienced receiving the news that our baby has Down syndrome, so we know how you’re feeling, what you’re worried about, or what you are feeling guilty for thinking. We are delighted to have this opportunity to share a little of our lives with you to try to address some of those feelings, and to provide you with the information and support you need. As parents of children and young people with Down syndrome we can assure you that they each lead full and rewarding lives, and are much-loved sons and daughters, brothers and sisters, who our families wouldn’t be without, although many of us didn’t think that in the early days!
This website is full of information and resources – it’s worth keeping in mind that no child will have all of the medical issues included – we share so that you have access to information and support, if and when needed. So please do not feel compelled to read everything in one go, but rather know that we are here to provide you with support when you need it.
