Jack is 27 and needs full 24 hour care, but above all, he is “really happy, really sociable and full of personality,” says his mum Helen. “He loves being out and about, with people around him, especially when there’s laughter and interaction – in fact, the more daft and the more cheeky you are, the more he relaxes.”
Jack is non-verbal, but his family know him deeply. “His eyes say a lot…a smile,” Helen explains. Equally, they can tell when something isn’t right. “It’s knowing when he’s not well, the other side of him.” With complex medical needs including cerebral palsy, epilepsy and chronic lung disease, this understanding is vital.
When Jack finished school at 19, the transition was daunting. “It’s horrible, you have to move on,” Helen recalls. Finding the right support was critical, not somewhere safe, but somewhere that could truly meet his needs. “It doesn’t matter what the building is, it’s all the people inside.”
With FX, Jack now has a flexible mix of support that suits him. He spends time both at the centre and at home, with two to one care and the freedom to go out into the community. “They can take Jack out and about and he also attends the centre regularly where he can see his friends and join in activities. “He also absolutely loves it,” says Helen.
The impact on the whole family has been significant. “It’s allowed us to carry on,” Helen explains. “Without this support, I’d have to give up work – we have our own business. But beyond work, it provides something just as important – space to do our own things. For example, it’s just nice to be able to go out with my daughter occasionally and sit and have a coffee without constantly being on alert.”
FX also supports Jack during more difficult times. “Even when Jack has been in hospital, staff have come and supported him. Having experienced professionals involved brings reassurance and another pair of eyes – that gives us comfort,” says Helen.
Importantly, the support extends beyond Jack. “It’s not just for us, but for Jack’s brother and sister as well,” Helen explains. The family feel included, understood and supported together. “They’ve got to know all of us, it’s the whole family picture.”
For families facing similar decisions, their message is clear, “Nothing has been too much trouble, no matter what the disability, they can accommodate and I would absolutely recommend it.”
