In her regular column for Able magazine, Jane Muir shares her ongoing experiences of life with – and without – her disabled son.
My son Alistair has been away at residential college for two terms, and he loves it.
While it feels like he has only just gone, though, time is racing by. I am overwhelmed by the realisation that I cannot stop caring after all; I already need to be researching and planning his future, because nothing has been offered, suggested or advised.
I know that other students have simply been sent home to their families at the end of their time at college. Alistair’s family is just me, and I now know I cannot do the physical care anymore. I look back on 18 years as a single parent, caring for a disabled son, and cannot comprehend how I managed. I love my son dearly, but the life of a carer seems routine-bound and physically arduous.
We’ve been put in touch with adult services because Alistair was 18 this Easter. They had difficulty deciding whether he should go into the physically disabled  team or the learning disabled team – a division which seems absurd to me. They settled on the former but, despite encouragement, I know my son cannot realistically run his life, manage money or think logically about his own future. His new social worker has told me that Alistair “doesn’t have to be your responsibility anymore,” but this is meaningless given the ensuing discussion about how much I will get – or not get – in direct payments from the adult team.
“How long does it take to get him up in the morning?” she asks. “What about meals?” The fact is that Alistair needs me nearly every waking hour. Employing carers is problematic: I have to find them, manage them, train them, and my own time becomes fragmented as a result. Direct payments are wonderful, but nothing is as straightforward as it seems. I feel that the social worker and I are talking different languages: Alistair needs to live in a small, supportive community, I venture, but I’m told those places are for people with learning disabilities. I know my son is not cut out for independent living, but that is the current thinking and where the money goes. There is no list of places to visit or ideas to investigate, but she advises me to put him on the housing register right now.
Back in February the college was snowed in and it was touch and go for a week whether I would have to bring him back home. Half term lasts 10 days, and I was exhausted by day six. In March he got a chest infection and I unexpectedly had to care for him at home for a week – up twice a night with no respite. As soon as he was well enough, I took him back, but then it was only a week until the long Easter break.
My freedom feels ever more precious and precarious. I learned with excitement about  the Orpheus Project, which would give him another three years living out and studying after college. However the excitement was short lived, as I was quickly assured that, because the Learning Skills Council is to be devolved back to local education authorities again, there is no way Oxfordshire would agree to pay. I met with Whizz-Kidz to organise funding for a wheelchair; it will be his last funding from a children’s charity. We have always relied on these charities for equipment; what funding exists for disabled adults?
In the meantime, Alistair still finds it impossible to make friends at college, except with his carers. “I’m lonely in my heart,” he tells me. Carers, though, come and go; while I booked his current carers to help me over Easter, one bailed out at the last minute and couldn’t be replaced – the complex nature of Alistair’s disabilities means that special training is needed, and there was no time to train someone else.
I wonder how we will get through the seven weeks of summer. I wonder how we will get through the rest of our lives. I am jealous now of my own freedom, but I also care about my son’s freedom, independence and quality of life. The question is, are the two compatible?