Below are some useful "top tips" for parents/carers. Over time we hope to see this section grow.
Please do feel free to tell us of any aids or top tips of your own that we may share with other parents/carers.
There is a lot of help and support out there for families caring for a baby with Down syndrome. However, sometimes information can be hard to find and difficult to access or understand. Sometimes information is confusing because support varies from area to area, even locally. There is a flood of information online but it can be overwhelming and hard to distinguish what is trustworthy advice.
The Hull Down syndrome Care Pathway is a road map of health provision for people with Down syndrome locally. This new Downright Special Health, Social and Education Directory presents health information from that pathway for ease of access in an age specific, need-to-know format. In addition it includes information about education, social care and support providing a holistic perspective of your whole family’s potential needs during this 0-18 month period of your child’s life. It is specific to the Hull and East Riding area. It includes contact details for all services and provides many links to local and online sources, some recommended by other parents or professionals and screened as reputable. We hope it will help you to navigate the first 18 months.
We are already working on the next Downright Special Directory, which will be for the 18 months to 5 years age bracket. This directory will be education focussed with advice for navigating the transition to nursery and school. Whilst this is being worked on, even if your child is older, you may find some helpful information in this 0-18 month directory.
NHS Hull Clinical Commissioning Group, in parternship with health and social care services in Hull have been developing a pathway for people live with Down syndrome and their familiers or carers.
We've developped a social story to support children visiting hospital for their paediatric review.
Children with Down Syndrome should automatically placed on the Learning Disability Register. Sometimes this doesn't occur and as parents/guardians we need to reach out to our GP to determine if this is the case. A template has been produced that you can download and complete before sending to your GP.
We have updated our lending library thanks to a £250 grant from HighFiver. The grant has enabled us to purchase many new books for you to borrow.
Not only that but our entire catalogue can now be viewed online. You can browse for books and resources and then request / reserve the ones that you would like to borrow. Books can be borrowed for up to 4 weeks.
If you have any ideas for any additional books to add to the library then please let Louise know.
We're delighted to announce that our Summer/Autumn sessions will continue to be face to face. We have the following dates to share.
Note half term on November 3rd, so no session on this date
Please let us know if you cannot attend a session - either contact your group leader direct, or contact the office on 01482 420160 or firstname.lastname@example.org
We regularly have visitors to our Friday sessions, whether they be healthcare professionals, friends from the community or old faces returning to have a catch up with us.