Transformative Respite:
A Shared Lives Success Story in Supporting a Family with Fragile X Syndrome
Shared Lives is a national scheme managed in Surrey and surrounding areas by Surrey Choices.
Shared Lives offers a personalised service planned around the needs and interests of a person, by providing them with short or long-term support in a Shared Lives Carers home.
Hear how one family have been enjoying the positive impact of having a Shared Lives family to help care for their sons. Now they can spend one to one time with each son and have time for each other as a couple.
“We have two sons with Fragile X Syndrome and we spend all our time caring for them and thinking about their needs as they grow into young men.
We were matched with a Shared Lives family and started off with one son going once a week. Immediately D loved it and it was great in so many ways. D had time away from us to improve his independence, and we had time to spend with our other son, who has different likes and dislikes to his brother. For example, we took him out to eat in restaurants where D would not be able to go and we choose food to eat at home that D does not like. J really enjoys this time with us.
Then we got funding for J to start on the scheme, and he now goes to the same Shared Lives family once every other week, hopefully increasing to every week in the near future. J took to this well and it was lovely on his first visit when he phoned home and spoke to his brother about his experience. To see both brothers talking to each other excitedly on the phone was just amazing.
Both boys love spending time with our Shared Lives family and enjoy the one-to-one time they get with us when the other one is away. We are soon to try a couple of days when both boys go at the same time to their Shared Lives family, and we will have a few days to ourselves. We cannot quite imagine it yet but know it will feel very strange!
Overall, our experience has been brilliant, and we would really recommend it. We do not have any family in the local area and Shared Lives has meant that it feels like we do.”
Learn more about our Shared Lives Service here and how you can become a Shared Lives Carer yourself.
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