Grandparents wouldn't change a thing.
In celebration of Down’s Syndrome Awareness month this October, #Zebedee have collaborated with Wouldn’t Change a Thing on a special photoshoot. We invited grandparents of children with Down’s Syndrome and their families to take part. Throughout the day they shared the extent to which attitudes towards Down’s Syndrome have changed during their lifetime and what advice they would give to other families who have children with #DownSyndrome. Whilst recent years have seen great improvements in societies perspective of Down’s Syndrome with more opportunities for those diagnosed in work and school and more investment in research leading to medical advancements that have drastically increased life expectancies, there is still a need for advocacy to promote a society that welcomes everyone with an open heart, provides equal opportunity and access for all and allows everyone with Down Syndrome to shine and reach their full potential. It is estimated that around 1 in 1000 babies born worldwide have Down Syndrome, each of which unique and wonderfully capable individuals with their own talents and skills and the ability to live a fulfilling life as these beautiful and loving families are proving.
Christine- Joeys Grandmother.
Hi my name is Christine I am the proud grandparent of Joey Jorge Huntley who happens to have Down Syndrome.
When I was little we never really knew a lot about down syndrome. I knew that DS was a disability and back then we never really saw much of children with disabilities, people with disabilities such as down syndrome weren't usually integrated into society, which I think is very sad as people as those people must have missed out on so much. I also remember there was a home close to our town where a lot of children who were born with disabilities were sent. People who had a child with a disability were offered to have the baby taken away and usually told that, that baby wouldn’t be able to live a ‘normal’ life and ever be able to do much at all, how wrong could they have been.
It wasn't easy for those parents back then. I remember one lady telling me how the doctor was surprised when she said she wanted to keep her baby and love it just like she would have done with a typical child. She told me that people used to stare a lot and even ask her when she was sending him away. That must have been so upsetting for her.
One of my first re collections of the knowing more about DS was when my younger cousin gave birth to twins who also happened to have down syndrome. They were both wonderful boys and are now around the age of 43, I have rarely seen them throughout their adult life but they have never forgot me and if ever I do see them they always remember me. She is a very good mum to the boys and brought them up just the same as anybody else.
I am so glad that attitudes have changed so much especially over the last 10 years, there couldn’t have been a better time for Joey to be born. He is like a mini celebrity in our area, everybody knows and loves him.
When Angie had Joey she rang me to tell me that he was here and that they suspected he had DS, I was a little shocked as he was a post natal diagnosis, but I knew that they would be fine. Joey was very poorly shortly after birth and I just remember Angie being heart broken seeing him so poorly, the DS didn’t matter at all, the only thing that any of us wanted was for him to be OK and pull through.
I wouldn’t say my attitude has changed that much due to us already having the twins in the family, I have always had a soft spot for people with down syndrome so Joey was welcomed from day one and treat as an equal.
The only fear that I have for Joey is his health he has two holes in and will require surgery at some point. I just want him to grow old happy and as healthy as possible, and for people to accept him and be kind.
Joey is such a joy to be around, he is full of character and has the most amazing personality. He is like a mini comedian, he trys so hard and never gives up. We have all learnt so much from this little man. He has just started in mainstream school and we are all so very proud of him. His smile can light up a room and giggle is so infectious. He makes my day whenever I see him.
I would say that Angie having Joey has brought us all so much closer as a family.
The only advice I could offer would be to anybody who happens to be lucky enough to have a child with DS like our Joey is embrace it, don’t listen to the myths, ask real parents grandparents for advice, go to your local DS support group and enjoy.
Things wont always be easy but are they ever. With the one little extra chromosome you get the extra everything, extra cuddles, love, smiles, giggles, naughtiness, mischievousness, and that little person will also try extra hard in everything they do and get over more obstacles in life than most people. Enjoy every milestone and celebrate everything, give that baby lots of encourage and praise.
We are blessed with Joey and I'm sure you will be too.
Joan MacDonald - Mikey's Granny
Sadly when I was young a child or adult with Down Syndrome was considered an oddity, someone we didn’t want to have anything to do with and maybe a little bit scared of.
The parents of these children had to bring them up with very little, or in some cases, no help. A very difficult time.
Thankfully times have changed for the better although I was still a little shocked to know that my second grandson would have Down Syndrome. He is however such a delight, loved and adored by us all and he brings a lot of happiness just by being who he is.
My son and daughter-in-law are concerned about his future as I am too but he is a confident young boy with a wonderful personality, accepted in the family as an equal and I feel this will stand him in good stead in the future.
Take a moment to watch this really special video of the shoot day and hear all about it from the Grandparents.