Richie is 48 years old and like the title suggests is an adult with Down’s Syndrome. My name is Fiona and I’m his big sister.
Over the last few years, Richie and I have been part of a research project with University of Cambridge, Neurodegeneration in Aging Down’s Syndrome https://niad-project.org/, which looks into the effect that aging has on adults with Down’s. In the course of discussion with one of the The Cambridge Intellectual & Developmental Disabilities Research Group team, the idea of writing a blog about the day to day up and downs of helping Richie maintain as independent a lifestyle as possible, was formed. It’s taken a few months to sit down and do it but I hope that by sharing what we as a family do and have learnt along the way, we might be of some help to others.
There is a wealth of information and support groups for new parents of children with Down’s and for children as they are growing up. However, as those young people grow into adulthood and middle age the information about what to expect, where to go for support and how to cope is harder to find. Charities such as the Down’s Syndrome Association and Mencap are brilliant and provide a range of activities and advice but an adult with Down’s continues to need a wider support network from family and social services in order for them to be able to develop skills and be part of their community.
In 2019, I made the decision to leave my job as a primary school teacher so that I could be around more to help with the support Richard needs. He is often complimented on his level of independence which is made possible because of the huge amount of work going on behind the scenes. He has a small number of hours support through a care company, but the majority of his daily needs and activities are managed by our Mum, and more recently myself.
Our Richie loves theatre and performing, especially Shakespeare with a local adult group. So it seemed fitting that a blog about him be given a suitable theatrical title.
So here it is…The Importance of being Richie!
Photo: Joss @ http://www.mountainmavericks.com
The Importance of being Richie 