I won’t lie, the transition to adult services was unnecessarily difficult, but we couldn’t have predicted the outcome.
I am mum to Simon, a happy 19 year old with cerebral palsy, microcephaly, severe learning difficulties, epilepsy and gastrostomy fed. However, Simon loves people, socialising and being part of a lively environment. He loved his respite in children’s services (and so did we!). We had a few expected and unexpected difficulties to overcome when he moved to respite in adult services and we began to feel a little unsure about the future
We had decided that in view of Simon’s love for socialising we would apply for residential college but wondered whether his health would pose problems. He has severe reflux and can easily aspirate leading to sudden chest infections/pneumonia. Also, if he did have a 52 week placement when would we be able to see him? However, if he was only resident in term time we would still have the same difficulties in holiday time. I knew that if we didn’t give residential a try we would never know if it could work for Simon - shouldn’t we aim for the surroundings we knew he would love and try to make it work even if that meant some changes would be necessary. We pressed ahead and applied for a residential placement but in reality, at the back of our minds, we thought it was more likely that Simon would become a day learner and live back at home with us.
It is now 7 months since Simon left home and we couldn’t be more delighted with how things have turned out – and we are as sure as we can be that Simon feels the same way. College and residential staff have all got to know Simon extremely well. He loves their attention and the banter between staff. They have learnt how to care for him when he shows signs of becoming unwell and their quick responses have probably helped keep him out of hospital. They contact us when they feel it has become necessary and we have encouraged this contact. As time has gone on we feel more and more relaxed about him living away from home. The strange thing is we are not missing him as much as we thought we would because he is happy, well cared for and we can see him when we choose. We can visit him whenever we want and can bring him home for a stay when we choose – it’s up to us. This is far from how we expected things to turn out. You can still be very involved in your young person’s care, as we are, just not carrying it out on a day to day basis. We are working as a team with the staff at college and medical professionals to give Simon a happy, healthy life.
Sarah CoxJoin PACC < Back to Parent Carer Stories