Please introduce yourself and your family and tell us a little bit about your grandchild who has Down’s syndrome?
Alice is the only child and daughter of our son Barry and his wife Sophie. Alice will be 2 at the end of March. She is our second grandchild. Alice is healthy and a total delight. She is using sign language well and can now crawl and pull herself up at the settee. She is learning so much. I look after her every Thursday and I love it. She brings us such joy.
When did you find out that Alice had Down’s syndrome and what did you feel when you heard the news?
We knew that Alice would almost certainly have Down’s syndrome when her mum was about 20 weeks pregnant. I was at Great Ormond Street Hospital with my grandson when my son got the phone call with the news. My grandson was recovering from major surgery and I was very upset at the news about Alice. I don’t like dwelling on that now as it feels disrespectful to Alice. We love her so much. Why did we worry? Why be upset?
What does being a grandparent mean to you?
Being a grandparent means loving our children and their children. Being there to support wherever and whenever possible and receiving so much love and being able to give it. We are so lucky.
Were there any resources/groups/website/contacts that you found particularly helpful?
I searched so long and hard to find information and resources. The DSA website and Down Syndrome Educational were helpful. I have found the Grandparents UK FaceBook Group a fabulous support. I would have loved to have found it before Alice was born. Things seemed so scary then and I struggled to find positivity. The group is so positive and lovely!
What advice would you give new grandparents?
My advice would be to try not to worry and support the baby’s mum and dad all you can. Learn all you can about Down’s syndrome and enjoy the journey.
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: