Health visitors are often one of the first points of call for information when a parent has received a diagnosis that their baby has Down syndrome, so we are really keen to work with you so you have a contemporary understanding of what it means to have Down syndrome, to perhaps challenge any outdated perceptions and attitudes you may have and to have access to information, training and support.
We collaborate with health visitors so we can assist you in supporting expectant and new parents with up-to-date information and guidance.
The language you use is extremely important and we prefer the use of person-first language, if indeed it’s necessary to refer to a baby having Down syndrome. Please do take a read of our best practice guidelines.
We have a range of resources relating to babies and children with Down syndrome, that we hope you will find helpful – covering breastfeeding, baby-led weaning, constipation, toilet training, introducing signing and many more subjects including choosing a nursery and then on to primary school!
We are here to help, so if you can’t find what you need, please contact us.
As a proactive parent-led charity actively working with more than 3,000 families of a child with Down syndrome five years and under, Positive about Down syndrome has created this summary for health visitors to have an understanding of our families’ hopes for the support and care health visitors can provide.
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 and ongoing support they need and deserve.
Our research shows that babies with Down syndrome can be breastfed and we have many mothers who do so for many months and years.
The health benefits of breastfeeding are well known, we are of the view that the impact on a mother’s mental health and well-being should also be considered by medical professionals when considering feeding recommendations.
DSUK has a Breastfeeding Supporter – Sarah – who has extensive experience and knowledge about breastfeeding.
Sarah hosts online information sessions for professionals on breastfeeding a baby with Down syndrome, which features parents sharing their stories, general information and best practice.
A very informative session by American speech and language therapist Jill Rabin who has extensive experience of working with infants with Down syndrome around weaning and feeding.
We believe that with the right information, support and encouragement, most children with Down syndrome can be out of nappies and toilet trained, in plenty of time to be in #pants4school!
We work with June Rogers MBE, formerly of Bladder & Bowel UK, who has developed a 4-step approach, starting with introducing sitting on the potty from when little one is starting to sit, around 9 months and progressing over time to the final stage, step 4 when the nappy is removed.
We are keen to work with professionals across a range of disciplines to ensure they are aware of our initiative and the ability for children with Down syndrome to be potty trained alongside their peers.
At DSUK we are huge advocates of introducing signing from a young age to aid our children’s communication, as we know that speech for children will be delayed, so we use signing as a bridge until speech starts to enable the child to communicate with us!
We run regular Makaton training courses for our new parents, grandparents, nurseries and medical professionals.
At DSUK we are not medical experts, however, we are experts by experience, and we work with experts by profession in order to provide parents and family members with the information and support they need, as well as signposting to organisations who are experts in their given fields.
We have information on a range of health topics – including heart, bowels, infantile spasms, physical development, speech and language, audiology, eye care and more.
We are delighted to collaborate with health visitors and maternity units across the UK to ensure expectant and new parents have access to ongoing support and contemporary accurate information regarding Down syndrome.
Lucienne is our Training Manager who can arrange training and provide resources to health care practitioners to ensure they understand the lived experience of having Down syndrome and realise the importance of their language and attitudes when speaking of Down syndrome.
We would be delighted to deliver training to you and can offer a bespoke session to meet your individual needs.
We also offer a closed forum for health visitors, midwives and other medical professionals working with our families, to access information, ask for advice etc.
We are passionate about ensuring expectant and new parents have access to the everyday reality of what it means to have Down syndrome in modern Britain. We have created a maternity pack that comprises of posters for wall displays, together with leaflets to pass onto expectant and new parents.
We would love to send you some resources to raise awareness and ensure parents and professionals have access to information and support.
