Down's Syndrome Awareness Month - Disco Beads

Down's Syndrome Awareness Month

October 25, 2017

Cornwall Down’s Syndrome Support Group
Cornwall Down’s Syndrome Support Group is a parent led group which offers support to families and carers of those with Down’s Syndrome living in Cornwall and has been established for over 20 years. 
Here at the CDSSG we hold regular support groups, organise training courses and workshops, organise family events and much more.  We offer families a chance to meet, socialise and share information, friendship and support.  This year we held a conference for educational professionals, parents and carers which included Speech and Language tips and best practises within schools along with Numicon training. 
Numicon Training
Introduction to Numicon training session                    
There are several support groups that we run within Cornwall,
The Looking Up Group – For parents and carers with children with Down’s Syndrome aged 0-5 years old.                                                 
The Moving Forward Group –The MFG offers parents the chance to meet other parents and discuss any issues they may have regarding their children during the next stages of their child’s development.
Learning Support Group - Parent led where you can come learn the latest Makaton signs, Numicon tactics, SALT information and much more!
Chaos Youth Club - A club for young adults over 11 years and siblings to get together and socialise.
Pick n Mix Dance TroupAn inclusive dance group.  They performed this year at the Positvie Choice Award Conference for Learning Disability Nurses in Hull.
 Pick and Mix Dance Troup
The CDSSG have also set up a facebook support group for Teaching Assistants and Teachers who support our children at school.  The group share ideas and resources.  This group is NOT for parents and remains confidential.
We also organise social events throughout the year for our members and their families, these have included Flowrider, Dairyland, Lappa Valley, Trethorne Leisure Park, and a weekend away to Piran Meadows.  
Going to School
Going to School takes the reader on a journey through a typical school day showing children having fun learning alongside their peers.
An inclusive book produced by three parents of the Cornwall Down’s Syndrome Support Group (CDSSG) to promote inclusion in schools.  Some of the children in Going To School happen to have Down’s Syndrome and some of them don’t – this publication is a celebration of diversity and inclusion showing that we are all more the same, than different.  Our approach is to use pictures rather than words to convey a message and the images the book contains have been chosen to give opportunity to talk about the many things that may happen during a typical school day – learning together, making friends and having fun.
CDSSG have partnered with Cornwall Council to ensure this book is included the BookStart Treasure Packs given to every Cornish rising school age child in the county for the next four years – some 30,000 copies.
Book start treasure Pack 
Since its launch 12th September 2016 word is spreading fast and the books are flying off the shelves.
The “Looking Up” team have been on radio, TV and social media is spreading the word rapidly with celebrities tweeting photographs of them holding a copy, check out our Instagram page for more info.  We are on Instagram
 going to school book
To date the book has been photographed with Aidan Turner from Poldark, Sally Phillips from Bridget Jones trilogy, the cast of Emmerdale & Hollyoaks, Plymouth Argyle FC, and many more.
Going to School – Makaton Signs & Symbols Version 1
CDSSG are thrilled to announce the release of a 27page Makaton pdf download to accompany the Going To School book. The idea behind the book is to offer a useful resource for parents, carers and professionals. The book offers a very useful guide and tips of how the Symbols can be printed, cut up and laminated to aid communication between you and your child.
You can purchase a copy of the Going to School Book from our website address,
The Looking Up Book
looking Up Book
Sometimes it can be really difficult for families to envisage what life with their new baby with Down’s syndrome will be like, particularly if he or she is born with health problems. This book helps to explode some of the myths and shows the reader that given the right opportunities, children with Down’s syndrome develop and thrive alongside their peers.
As parents of babies born with Down’s syndrome, we all remember those early days after birth and for some of us the great need to find information on the future for our children.
The Looking Up Groups are part of the Cornwall Down’s Syndrome Support Group and the members wanted to reach out to other parents of new-born babies with Down’s Syndrome to share positive and uplifting photos of the amazing journey of everyday life with their children. You will be facing some challenges ahead but in this book we do not focus on the medical facts or statistics but rather the children themselves.
Some of the goodies included with the Looking Up Book in the New Parent Welcome Packs
You can purchase a copy of the book from Edge of Time who are a local Cornish bookseller and retails at £19.99
Any profits from book sales go directly back into the Cornwall Downs Syndrome Support Group charity and will be used to purchase more books to be gifted to as many new parents as possible upon diagnosis in those early and often overwhelming days. We are really excited that the book will not only be gifted to new parents in our County but further afield. Please visit the Looking Up Book website at for more details.
How Common is Down’s syndrome?
On average, two babies are born with Down’s syndrome each day in the UK. For every 1000 babies born, one will have Down’s syndrome.
Although the chance of having a baby with Down’s syndrome rises with maternal age, the majority of babies are born to younger women, since the overall birth rate is higher in this age group.
Cornwall Down’s Syndrome Support Group contact details
Our aim is to spread awareness and to do this Disco Beads designed us an extra Special bracelet for us to wear with pride and to support the Charity!  If you would like one, go to this link 
£1 from each bracelet goes to our local Cornish support group.  Thanks for your help!
Disco Beads Downs Syndrome Charity Bracelets

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