Please introduce yourself and your family and tell us a little bit about your grandchild who has Down’s syndrome?
Cerys is our 2nd grandchild. Her older brother Dylan was 4 when she was born. Our daughter had refused any tests during her pregnancy. I think it was in the back of her mind that her baby might have Down’s syndrome because she was 41 when Cerys was born. She is a social worker, and at the time had lots of experience of working with adults with various learning difficulties. She knew lots of people who have Down’s syndrome.
When did you find out that Cerys had Down’s syndrome and what did you feel when you heard the news?
When Cerys arrived, she suspected she was a special baby but was told: “I don’t think so, we would have spotted it immediately”. But Pam asked for checks to be done, and bingo!
So it was a few days before we knew. My husband, Alun, and I shed many a tear. It was so much to take in. We feared for the future for Pam and her family. We loved this new grandchild very much but were very anxious. How disabled was she? Just what did the future hold for her? Those anxieties do not arise with the arrival of a new baby without an extra chromosome so we began to just take 1 day at a time – which is always the way with a new baby. But the first smile and all the little milestones became extra special. Cerys sat up by 8 months. Walked just after her 2nd birthday. Started mainstream school (although it was another year before she was out of nappies) with one to one support. She is now 9 years old. Love’s to sing and dance. Sorts out iPlayer on the TV and has set up the subtitles on her favourite programmes!
What does being a grandparent mean to you?
Cerys has enriched our lives. She loves everyone. Wherever we go she causes strangers to smile. No one can resist her bright “hello”.
Were there any resources/groups/website/contacts that you found particularly helpful?
Pam and Cerys joined the CDSSG (Cheshire Down’s Syndrome Support Group). The whole family is welcome, and I went to a few events. I have joined the Grandparents UK Facebook Group and it’s lovely to see photos of all the other grandchildren. Hopefully those of us whose grandchildren are school age, and older, can help to dispel the natural concerns that new grandparents may have.
What advice would you give new grandparents?
I would recommend new grandparents to join in with their local groups. Learn a bit of Makaton, even when the babies are very young. It is so helpful. I would even say invaluable.
Cerys does have one other health issue. She is very lucky in that regard. She has under active thyroid so will take thyroxin for life. It doesn’t hold her back. Goodness knows just how lively she would be if her thyroid was OK.
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: