Frequently asked questions - New parents
Our closed Facebook Group is exclusively for new parents in the UK of a baby with Down syndrome up the age of 18 months. It is a super supportive safe space where you can ask any question, share any concern and celebrate any milestone. We have a fabulous team on hand with parents with a range of experiences around discovering baby has Down syndrome, and how they received that news, as well as experts in certain areas you may value advice from.
You are most definitely not alone, we are here to hold your hand and provide you with the information and support you may need, as and when…..
PADS funds 1:1 counselling with an independent highly experienced counsellor to members of our New Parents groups who may be particularly struggling. We also offer small group sessions which parents’ feedback as being extremely helpful and beneficial.
Dads are most welcome in our New Parents group as well as to a group exclusively for dads! It is a relatively quiet group, but there are dads on hand who are parents to children with Down syndrome, some of whom struggled in the early days and understand any worries or fears you may have.
Every month we have an online session for dads to meet and learn the Makaton signs for a children’s story book. And we have a WhatsApp group dads can join, do contact us for details.
There are recommended checks that baby has, the most important is the heart. Every baby with Down syndorme must have an assessment of their heart including an echocardiogram.
The Down Syndrome Medical Interest Group has produced a guide including a growth chart specific for babies with Down syndrome.
Health Visitors/maternity units will often provide copies.
Before baby is 6 weeks old, they must undergo an ultrasound scan of the heart called an echocardiogram. If baby does require any surgery, PADS has Heart Buddies who will support you before, during and after little one’s surgery.
We have compiled a selection of parents’ stories around their Lived Experiences which we hope will provide you with information you may find helpful and reassuring.
Yes! The majority of babies with Down syndorme can breastfeed. We can offer you ongoing support around breastfeeding, so if this is how you wish to feed your baby, we are here to provide you with information and support. We conducted a survey in 2021 of over 300 mums and discovered that the majority who wanted to breastfeed had done so. As with any breastfeeding journey, for some it was straight forward, for others it took time to establish.
You may enjoy reading some breastfeeding journeys we have collected in our publication Lived Experiences – Breastfeeding.
We have a closed Facebook group exclusively for those who are breastfeeding their baby where you can chat with other mums currently breastfeeding and those who may have now stopped but remain to share their experiences and offer advice. PADS employs a Breastfeeding Supporter, Sarah Ojar who is available to chat/message and offer information and advice.
The condition is also known as Down’s syndrome and as Trisomy 21.
Whilst people with Down syndrome share some physical characteristics, a child with Down syndrome looks more like their parents and siblings, than other children with Down syndrome.
We realise that it can all feel rather overwhelming at the beginning, and you may worry about not being able to cope, finding out what to do etc. So, PADS has published our Little Orange Book of Knowledge, aka You don’t know what you don’t know. This is a wonderful book that you can dip in and out of as you want to find out any information, as and when you need to.
Our closed groups are also full of information and support, so you will be really well supported and have access to information as you need it.
And if by chance you can’t find what you need to know, just ask! We are here to help.
PADS is very much about supporting the whole family and we are delighted to offer information and support to our Grandparents too, both those expecting and those already enjoying the fun and joy of being grandparent to a child or young person with Down syndrome.
We offer Makaton courses exclusively for Grandparents so they can enjoy learning how to sign.
We also have closed groups for dads to children with Down syndrome. We run evening sessions for our dads to learn the signs for a children’s story book each month, so you can read and sign a bedtime book with your child.
Some parents worry that having a baby with Down syndrome may have a negative impact on their other children, so do please take a read of some of our experiences in our wonderful book #NobodyToldMe the truth about Down syndrome, where there are stories written by siblings and indeed grandparents.
A lot of research has been conducted in this area and in a study of 822 brothers and sisters, 96% advised they feel affection towards their sibling with Down syndrome, 94% expressed pride and 88% felt they are better people for having the sibling with Down syndrome in their life. We don’t know how this compares to the general population, but not sure everyone feels as positively towards their family members!!!
We are always keen to connect parents with local families, and we have a wonderful network of support groups across the UK who you can access, as well as the ongoing online support PADS is able to give.
We see that many families connect through our closed groups and are always proud to see #PADSPals!
The majority of our parents advise that they have not needed to buy anything special and if they have equipment from older children/relatives they are able to use the same again.
A few babies require a car seat that is more horizontal than upright, and recommend Cybex Cloud Z or Joie Baby i-Level Recline. We’ve noticed that many rave over the Shnuggle bath, that was designed and created by parents of a child with Down syndrome. Shnuggle are kind enough to offer our parents a discount of 15%, just quote SHNPADS15 when ordering!
As baby grows, parents do find more supportive seats/high chairs helpful. Some local authorities provide high chairs and Tumble Form chairs to families, so worth asking in your area. Otherwise parents recommend the basic Ikea high chair with an insert and many recommend the Giraffe chair from Fisher Price.
PADS has a group where PADS parents kindly pass on some of these items to others for cost of postage and a donation to PADS.
It’s fair to say no one can predict the future for any child. Yet we do all too often hear of medical practitioners telling expectant and new parents just what their baby with Down syndrome, will and won’t be able to do! Our book #NobodyToldMe the truth about Down syndrome and PADS website give an insight in the reality of our lives. Parenting any child brings rewards and challenges, and it’s fair to say that parenting a child with Down syndrome is the same. We often say that we celebrate the milestones even more, as we know for our children they generally take longer to master a skill, and so we regularly see and hear from parents who burst with pride at what their child is doing.
If you enjoy celebrating your child’s milestones we have developed a wonderful set of celebration cards you may like!
This is obviously very personal to each family. In general we see that friends and family will follow your lead, and so if you share the news in a positive way, you should receive positive responses.
Some new parents just tell friends and family they are in close contact with as and when, others choose to pop a post on social media. There’s never a one size fits all way, so you do feels what’s comfortable for you and your family.
From our experience it will be a complete mix of emotions with an overwhelming dollop of pride!
In the States Dr Brian Skotko undertook research that showed that of 2,044 parents 99% advised that they love their child with Down syndrome, 97% expressed pride, 79% have a more positive outlook on life.
Whilst some parents struggle in the early days of discovering baby has Down syndrome, we see that the absolute vast majority of parents go onto wonder what all the worry and fuss was about.
We know that folk with Down syndrome have a learning disability, that it takes longer to learn and master skills and for some who have a dual diagnosis with autism, development is slower and needs are more complex. But what we see time and time again, is that parents love their children and whilst they may well want to change the systems that can at times be challenging, would not want to be without their child or young person with Down syndrome.
As parents, we adapt, we meet our children’s needs, whatever they are! If your daughter wakes in the middle of the night being sick, you get up and look after her – whether she has Down syndrome or not. If your son has delayed speech, you find out how to help him – whether he has Down syndrome or not.
There are some wonderful local groups across the UK who offer groups you can join and connect with other families. So many of us have made life long friends locally and via the power of social media across the UK, indeed internationally!
On PADS groups there is always someone who knows how you’re feeling, has the answer to any queries and will join in celebrating every achievement – however big or small.
Parents often advise that they become far less judgemental, more considerate and patient, and enjoy and appreciate life in many different ways.
Parenting any child is a mix of ups and downs, and so it is with a child with Down syndrome. It can be tough when your friends kids are all off and running, and your child isn’t yet walking; or when other children can recount the alphabet but your child’s speech is delayed. That said, it can also be so, so rewarding when your child does walk, does run and communicates with you. So many of our parents advise that the pride is far stronger than with other children; that you appreciate every step and become the strongest advocates, shouting from the roof tops just how amazing your child with Down syndrome is, and discover just how loved and valued they are by friends and family.
There are frustrations and challenges too… we think most would agree, mainly due to bureaucracy and systems, not due to the child themselves. Times are changing for the better and opportunities increasing for people with Down syndrome all the time.
Down Syndrome UK was very proud to be heavily involved in the Down Syndrome Act which was introduced in England in 2022. We believe it will raise awareness and expectations, and improve services and knowledge around how best to support our children and young people.
If you listen to people with Down syndorme, their friends and families, the future is exciting! The journey ahead may be taking a different route to the one you perhaps expected but we’re here to help you to navigate the journey, and to enjoy the views and the ride!!
As with any new born baby, no one can predict how your little one will develop, what their strengths will be and what they may find more challenging.
Having a condition such as Down syndrome that can easily be diagnosed, does mean that your baby will be eligible for extra medical checks and support to help them to develop and flourish. Some of our children have no additional health needs, aside from common ailments; others have more complex needs. It is estimated that approximately 15-20% of people with Down syndrome have a dual diagnosis of autism.
Parents often look for signs to indicate how severe the learning disability may be. We do not know of any indicators, as with the typical population, there are folk with Down syndrome who make tremendous progress in education, others less so. Parenting a child with Down syndrome, does highlight there are so many more qualities, strengths and abilities than those traditionally measured in education. People with Down syndrome are often extremely empathetic, kind, considerate and unselfish. There are of course always exceptions!!
Increasingly more and more children in the UK attend their local mainstream school.
Our children and young people should be able to access support throughout their education. The framework varies across the UK, but there will be a legal document that sets out what your child needs help with and how the school must provide that support.
At DSUK we hold regular information sharing session and training so you understand what is required. So this is probably a way off for you, but rest assured we are here to help you as and when needed.
The support needed will vary from child to child, and the support available does currently vary across the country. We hope that the implementation of the Down Syndrome Act 2022 will improve services and support to our families.
At PADS we are passionate about ensuring our families have access to the information and support that their child needs and deserves. Where local services are lacking, some local support groups provide services. For those who do not have good local services and support, PADS provides online physiotherapy advice and support from birth, via POPS! PADS Online Physiotherapy Sessions.
And as baby reaches 6 months, our wonderful PEGS – PADS Early Development Groups guide you with everyday activities you can do at home to help little one’s development.
Our Little Orange Book of Knowledge is full of information to let you know what little one can access and when.
There’s no need to know everything now! Just know that we are always here for you.
We have many parents who are travelling the journey as a lone parent. Some by choice, some not.
As with any situation, friends and family count even more. And what all our parents discover is the amazing community of PADS parents who are there to provide encouragement, support, a shoulder to cry on, a milestone to be celebrated……
One single mum shared, ‘The PADS community provides a wealth of knowledge and support in the early days when I really needed it. There is no judgement, just offers of help and support. You kind of become a warrior, there is nothing you wouldn’t do for your child, even more so when you’re doing it alone and with the additional need. On a positive, I am super proud of how far we’ve come, all we’ve achieved, how well my daughter is doing and it’s all down to me (and her of course!) but I’ve done it all, it’s very satisfying, plus I get all the cwtchs/cuddles!
Having a child with Down syndrome gives you access to a club you may never have chosen to become a member of, but once you’re in soon discover is the best kept secret!
Folk with Down syndrome and their families are generally entitled to financial support.
In brief, Disability Living Allowance is available from 3 months of age. It is awarded to children who require considerably more care than a child of the same age without any disability. Some of our families receive DLA from 3 months, most from 12 months.
You can potentially apply for Carer’s Allowance once DLA has been awarded, and if you receive Universal Credit this may increase too.
Contact provide some very useful information about the different financial benefits you/your child may be entitled to.
You are already being a great friend by being here and reading our website! Educating yourself about Down syndrome is great, but often friends just need to know that they’re not going to be the odd ones out, left out in any way. Act naturally and continue to ask questions and take an interest as you would have done anyway. Keep things in perspective – baby has an extra chromosome, they may have additional health needs, they may not. They will have a learning disability but that doesn’t stop them from learning and it most definitely doesn’t stop them from being loved or from loving their parents and families.
You may find some of our guidelines helpful as they give a brief introduction about the condition, the importance of respectful language and bust some of the outdated myths! Our Positive about Down syndrome website is full of stories that shows the everyday reality of our lives, as does our publication #NobodyToldMe the truth about Down syndrome.
If appropriate, acknowledge that your friend may be upset and/or worried when they discover baby has Down syndrome. There is a lot of ignorance and outdated information around the condition.
Do please signpost your friend to PADS closed group for New Parents.
Congratulate parents – a new life is to be celebrated and that is as true for a baby with Down syndrome as any. Compliment parents on how gorgeous baby is, if parents are happy for you to do so, cuddle baby and enjoy the new born snuggles and smells! Let your friend know that they have an exciting future ahead of them, and that they’re not alone – they’ve got you and they’ve got us! Together we can ensure your friend is supported and cared for, and their precious new baby celebrated and enjoyed.