Well, we haven’t got yet.
As Alex grows up… and gets bigger and taller and heavier… and we get older, frailer, tireder… there will come that point where… well, he will have to move out. And at that point I don’t want us to feel that we’ve failed.
Every child is supposed to move out, right? As parents you quietly help your children to gain their independence: using a spoon properly, getting yourself dressed, walking to school, managing your homework timetable, knowing how to cook a spaghetti bolognese… Emma is at homework timetable. Alex? Well, we’re still working on the spoon. And that’s ok. Because that’s where his trajectory has taken him so far. But, being realistic, he’s always going to need 24 hour care on hand. He’ll need 1 to 1, sometimes 2 to 1 support to really interact with the world. And I want to know he’ll have that. Not just from us, but from everyone who is there to take care of him. To look after him. To nurture him. Because we won’t always be here. And it just can’t all fall on Emma.
One evening, as we were talking about something quite inconsequential she blindsided me with:
Mummy, who will look after Alex when you die?
Adult care frightens me.
It frightens me even though I want to believe in the system. That it will be there for him. But all I see are successive governments who really don’t seem to want to look after their most vulnerable, who seem to feel it’s really not their responsibility and that these people can somehow support themselves… and councils who, with budgets cut, are having to make impossible choices between fixing pot holes and providing care for those in the community who need it most. It doesn’t fill me with hope.
So a friend and I had a thought. What if we created our own source of care?
Over 20 years ago, not far from us, some other parents felt the same. They wanted a home, not an institution, for their children to live in. To be as independent as they could whilst being safe.
We visited to see what they had achieved.
I was nervous. Because it was like looking into the future, and I wasn’t sure I was ready. At 5, 6 years old Alex is still such a little boy and part of me wondered if I was getting ahead of myself. But… I like to plan, it gives me a sense of calm.
And here, in lovely grounds, with plenty of space, was one large residential unit – converted from an old hotel – with smaller custom-built houses off to the side for those who were more independent. It wasn’t perfect, but it felt friendly, the staff seemed genuine and those who lived there seemed engaged. Happy. Not sad. Not rocking in a corner smelling of wee. You know?
And their staff turnover average is 8 years. That’s amazing for care homes.
What we’d like to do is slightly different. Our children need more care than those we met did. Their home would need to be more custom built to meet their needs. They’d need safe beds, secure rooms, access to a hydrotherapy pool, a sensory room, safe spaces to play and explore as they got older. Well paid carers who would help them grow and change – still get them outside into the fresh air where they all love to be. To remind the town that all sorts of people, with all sorts of needs, live here.
There are different ideas as to how this could be achieved, whether we convert a current space or buy some land and build our own. This kind of facility is lacking in the town where we live. It’s the kind of town that I think would embrace this idea. It’s a forward thinking town that really tries to look after its own. I can’t think of a more positive place to try this.
We have time, and I hope we’ll find people who will be able to help us. We’ve never done something like this before, we only know it must be possible.