Please introduce yourself and your family and tell us a little bit about your grandchild who has Down’s syndrome?
My name is Carena and I am grandma to two wonderful girls, Amber who is five and Emily who is 13 months old. They are the daughters of my Daughter, Kate and Son in Law Ian. Emily has Down’s syndrome, she is a little character, who is very determined and now she can crawl, a real mischief who wants to be into everything. She is progressing well with her milestones albeit a little behind her ‘typical’ contemporaries. My husband and I look after her every Monday whilst our daughter is at work. We look forward so much to that day each week. She is an absolute joy to be with.
When did you find out that Emily had Down’s syndrome and what did you feel when you heard the news?
Emily was diagnosed with Down’s syndrome when she was first born, she was born two weeks early and was a very poorly baby requiring transfer to a specialist paediatric unit and an operation for duodenal atresia. During those first days, the diagnosis was secondary to the fear that we might lose her. I bonded with her straight away and all I wanted to do was hold her, she was my precious granddaughter. When the diagnosis was confirmed at 6 days I had fallen so much in love with her that the significance of her having Down’s syndrome didn’t feel important.
What does being a grandparent mean to you?
I can’t put into words what it means to be a grandparent, I know that being with the girls gives me so much joy, I can’t imagine what my life would be like without them. I love the opportunities I am given to be part of their lives, whether it’s reading a bedtime story or collecting them from nursery and school. It has given me immense pride to see my daughter and son in law develop into amazing parents. I am also beginning to see that being the grandparent of a child with Down’s syndrome is a special privilege, it has given me the opportunity to communicate with and meet lovely people who have a common bond.
Were there any resources/groups/website/contacts that you found particularly helpful?
After Emily’s initial diagnosis, I was eager to know as much as I could about Down’s syndrome. I found the Down’s Syndrome Association’s information non-biased and reasoned, it gave the positives and discussed the challenges ahead. The association website is a resource I go back to again and again. They have good links to evidence-based Information. Our local Down’s syndrome group is also proving to be great at a local level. The contacts within the group are all parents and they are always willing to share their experiences. I use Social Media a lot so I searched for groups or blogs and found a couple of parent blogs that gave me an idea of how my granddaughter might develop and grow and I followed those a lot at the beginning, but I find myself visiting them less as I make more contacts locally. The grandparents Facebook group has proved invaluable.
What advice would you give new grandparents?
Everyone’s situation is different, but I would certainly encourage new grandparents to be open-minded, try not to concentrate on the differences, get to know your grandchild, you will find a special bond there. Ignore the stereotypes, they are outdated as are some of the things friends and acquaintances will tell you. Look for your local Down’s syndrome group and join the grandparents Facebook group and share your thoughts and fears, there will always be someone there who understands. Most of all, be loud and proud.
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: