Please introduce yourself and your family and tell us a little bit about your grandchild who has Down’s syndrome?
My name is Shirley, my husband is Peter, we have been married for nearly 47 years and live in the South West of England. We are both in our late sixties. We have two children and seven grandchildren. Our son has three children and lives in Australia. Our daughter has four children and lives near us. Our youngest Grandchild Rosie is nearly seven years old and has Down’s syndrome.
When did you find out that Rosie had Down’s syndrome and what did you feel when you heard the news?
We found out she had Down’s syndrome when our Daughter was 24 weeks pregnant. It was a very difficult pregnancy and our daughter had to undergo surgery to save Rosie’s life so the doctor took some amniotic fluid at the same time as the surgery. We were grateful she had Down syndrome as some of the other reasons for the surgery she needed were much more life-threatening. After birth at 32 weeks gestation she spent 6 months in intensive care which was terrifying, she was tube fed and on oxygen when she came home.
What does being a grandparent mean to you?
The Grandchildren mean the world to us, we would do anything for any of them. We are very involved in our Daughters children’s lives but not so much with the children in Australia as it’s so expensive to visit.
Were there any resources/groups/website/contacts that you found particularly helpful?
I contacted the Down’s Syndrome Association which was helpful and we have all found the resources offered by Ups and Downs South West to be outstanding. The grandparents’ Facebook group is a great idea and a brilliant resource. I would have used it a lot for information when my Granddaughter was due if it had been set up then. It’s really lovely to see the photos of the families and any information given.
What advice would you give new grandparents?
The only advice l have is to enjoy your Grandchildren, don’t measure them against other children and love them unconditionally. We are so grateful Rosie is alive after everything she went through, she is our miracle.
Resources for Grandparents
Tea at Grandma’s – the third book in the Looking Up series published by the Cornwall Down’s Syndrome Group (CDSSG)
In collaboration with Helen Laverty & Positive Choices Network, CDSSG have created “Tea at Grandma’s” which focuses on the important role of the often unsung heroes that are the grandparents, who can have “double the worry” for their own child and for their grandchild when a diagnosis of Down’s syndrome is given.
It’s available to order for £3.99 (incl free UK mainland postage)
Down’s Syndrome: Grandparents Chat UK – Closed Facebook group
Launched just two months ago, this Facebook group is exclusively for grandparents of children/young people with Down’s syndrome to share experiences and offer peer support.
If you would like to join visit the group page and click the ‘Join group’ button at the top.
Down’s syndrome: A leaflet for friends & family
This leaflet has been written to give you basic information about Down’s syndrome, to provide some tips about supporting the new parents and to highlight further sources of information.
Click here to download the leaflet or give us a call on 0333 1212 300 to request a copy.
Celebrating Our Lives, Our Stories and our YouTube channel
Our Celebrating Our Lives document profiles nineteen very different young adults with Down’s syndrome and gives you a window into what their lives are like. You’ll find a pdf version on our website here.
The Our Stories section of our website includes stories from people with Down’s syndrome of all ages and you’ll find a whole range of inspiring films on our YouTube channel.
#InclusionMatters
Lastly, here’s a little treat, courtesy of Daily Dose of Bella on Facebook . Bella recently had a starring role in a McCain’s advert with her Grandma and younger brother: