Rio’s Story, about two amazing people with DS
My Name is Rio and I’m the extremely proud aunty of Rory Ed. I grew up with a family friend who had Downs syndrome. I loved going to their house because the front room was full of games. I always had a friend to play with, when Lee was around, and we would always try to get his parrot to copy us being silly.
I was also lucky enough to go to school with two boys who happen to have Down syndrome and was in the local marching band with one. Since the age of sixteen (now 26) I have given up my time to coach in sport specifically for those with SEND. This is where my passion for inclusion came from and where I met a lot of my friends.
In 2015, I got my first job as a learning support assistant and quickly became attached to a cheeky year 7 called Jack, who happens to have Down syndrome. I got to work with Jack a lot and we shared our love of sport and would regularly wind each other up over the football scores. Since both Jack and I left that school, it’s been great to still be friends with Jack’s family, and I loved attending his 18th birthday party this weekend.
In 2017, my second nephew Rory was born. It was love at first sight! Rory hadn’t been diagnosed with Down syndrome, when I met him. I just remember the most gorgeous little boy and the excitement of his older brother, Ollie, going to meet him. It wasn’t long until the excitement started to fade. Chelsea (my sister in law) was put in a room away from all the other mums. Nothing said, just isolated.
Nobody told Chelsea and Paul of Rory’s possible diagnosis. Chelsea read it in her notes and was still dismissed when trying to talk to the Doctor! I was so confused about the whole situation. My beautiful nephew has just been born, so why was the hospital so eerie? I remember Chelsea telling me and my husband (her brother) about Rory’s diagnosis. She must have been so shocked, as I really wasn’t bothered about it. She must have thought I didn’t care! It was far from it, I just didn’t really see it being the issue that the hospital made it out to be.
“OK, he has Down syndrome, that’s fine!” My anger came after being in hospital with Rory, when the Health Care Assistant told Chelsea how sad it was. Why is it sad? I cried the Friday after Rory was born. He was diagnosed with a few health conditions that the hospital only found after Chelsea had pushed for testing. This is when I felt sad – not at the DS, as I knew that would be fine – but how was Rory’s health going to affect him and why were the hospital still unsupportive and negative?
Just a month after Rory was born, Jack’s football team were playing at the City ground and I asked his mum, Claire if we could come to watch. She of course said yes! My family are big football fans so I thought this would be a great opportunity. The football team quickly shut a lot of the doctors’ comments up. He won’t walk, he won’t talk, etc. All these ‘wont’s were slowly being replaced with ‘will’s. At the age of 4, Rory is one of the most amazing, strongest little boys I know. He tackles everything life throws at him and proves all the doubters wrong. I know I don’t go through the day to day ups and downs of being a parent/carer of some one who has DS. But I couldn’t love Rory any more if I tried.
He makes me the proudest aunty and he’s already teaching the people around him so much. And now, since Education FC Warriors started up, Rory and Jack are now also football team mates