Jenny’s son Rory, received a diagnosis of severe autism and severe learning difficulties when he was two and a half years old.
Today, Rory is 19 and lives in Norwich with his mum and main carer, Jenny. He is non-verbal, can’t read or write and has very limited understanding. He doesn’t get the concept of names, colours or numbers. He doesn’t watch TV or play computer games and can never be left alone. Jenny explains:
“When you talk about some of the challenges Rory faces in isolation, it can sound pretty depressing – but in reality Rory is happy and healthy, sociable and popular and has an endearing sense of humour. He takes change in his stride, loves to dance and to bounce and I feel confident that I can take Rory anywhere, as his behaviour is so good.
Over the years, we have learnt to take risks and give Rory a chance. I didn’t always have a vision for Rory, but I learnt to have one from Rory’s dad, Monty. Monty was Rory’s main carer and devoted to him but sadly died in 2013. That loss – and all the knock on effects – is something Rory has also had to cope with.
Rory’s sporting achievements began when he started taking part in parkrun with his dad several years ago. He gradually got the concept of getting out of breath and not stopping. His running has since led onto many other activities and successes including completing a triathlon, running a half marathon, gaining a Foundation Climber certificate and becoming a competent skier.”
“I feel that Rory has – unwittingly – challenged many people’s perceptions about disability and autism in particular, including my own.”
There can be a lot of support for parents of younger children with autism, but approaching adulthood can lead to fresh challenges; education past school and transport to get there, facing a new team of professionals and providers, and also trying to navigate changes to the benefit system. It’s also daunting to have to start making plans for the long-term future when the main carer is gone. Jenny explains,
“I’m quite an assertive person but even I can find it difficult sometimes. I would encourage parents in a similar situation to seek as much support as possible, whether from fellow parents or local organisations and charities.
I wouldn’t want to imply it’s been easy sailing – on the contrary, I would never say anything other than it is a real challenge in bringing up a child with a disability but we are lucky that Rory has immense support from family and friends, and we have come across some amazing people who have helped us all on this journey.”