20 years ago Ciaron and Bev were introduced to the FX Day Service and they can honestly say they have never looked back. Bev was impressed at the very first meeting where they talked about Ciaron’s hopes, dreams, and what was on his ‘bucket list’. Ciaron’s bucket list included: to grow, to have a future, to make and maintain friendships and go to a concert – he has achieved all of this and more!
Ciaron was born with profound Smith Lemli Opitz Syndrome, which was given it’s name in 1964. At the time, there were just 42 cases recorded across the world when he was born and he was given just days to live. But, 39 years later, he is flourishing, enjoying life and fulfilling his dreams.
Ciaron is non-verbal and communicates with his eyes and making noises. The family and team at the FX Service also use Makaton converse with him, which is a language programme that uses symbols, signs and speech to enable people to communicate.
Ciaron first attended the FX service before he left school at the age of 18. He spent 3 days a week there during the summer holidays, which then increased to 5 day’s full time when he left school. He has now been attending for 20 years and is a familiar face and happy at the service.
Bev firmly believes in structure and routine and wants Ciaron to have as normal a life as possible, where he can have a place he goes for him, he learns new things, has new experiences, and makes new friends and connections. In their house, they call going to the FX ‘going to work’. Ciaron has certain clothes he wears for ‘work days’ and he always looks forward to it.
Bev says, “It’s difficult to put it in a nutshell because it’s important to him and me for him to have a routine and a purpose. It facilitates him to do the things that other people enjoy, such as, interacting with friends and being able to do activities like wheelchair biking in the park, rock climbing, canoeing and attending the SPACE Centre.
One of the most important things for me is that he has his own time, independent from his mum, getting to know new people and enjoying as many of the activities available to him as he can.”
Ciaron loves to join in most activities and will give anything a go. He’s open to joining in most of the activities at the FX Service. He particularly loves films and music, especially Kylie! He was very excited to go and see her live in concert with his sister a few years ago. Ciaron and his sister enjoy going to concerts with each other and they have also been to see Girls Aloud, the boy band Blue.
Ciaron also loves to travel and enjoys going on planes and trains – he’s very well-travelled, having visited places such as Australia and Florida!
The FX Service has been a lifeline for Bev, she said, “Not only do I appreciate the love and support the FX Service gives to Ciaron, but also what they give to me. The team are supportive of families and always there when I need them. It allows me time to do things I enjoy too and have a break.
I trust in the staff to look after Ciaron, they know his needs and his capabilities and this enables me to relax and enjoy our time apart. Both Ciaron and I get a lot out of the FX and I don’t know what I’d do without it.”