I’m having a bit of a wobble this week. Tomorrow my stepson turns 18 and next week Tink is four! I can’t believe J is officially an adult – a man, grown up and could be independent if he chose to be (but he’s still at home with his mum, as he should be!) It doesn’t seem 5 minutes since he was starting school, then going to senior school and I’m sure it was only a couple of months ago that I took him to pick up his GCSE results?! Hopefully, between his mum, stepdad, Dave and me, he’ll be equipped and prepared to make his own way in the big, wide world when he’s ready. Which got me thinking about Tink…
I also read a post on Facebook yesterday which got me thinking about Tink’s future, and how it’s not so cut-and-dried for children like her.
I doubt there’s a parent in the world who had a baby and thought, “gosh, I hope I have to care for this person until the day I die.” But that’s the reality for parents of kids with additional needs. Of course, you’re always going to be there for your kids, disabilities or no, like my parents are for me whenever I need an ear to whinge in, or some financial help, or help with the kids, for example. You don’t stop being a parent and being needed the day they turn 18, or the day they leave home. But parents of children with additional needs – disabled children- are going to have to be there much more, as there’s a good chance for a lot of them, they are never going to leave home. They’re never going to stop needing help with dressing, washing, eating, going to the loo, or, if they’re ok with those things, they may need help with managing finances, or staying in work (if they can get work), travelling on public transport, shopping for food… the list is somewhat endless! And who, if not the parents, is going to give this support? There are some charities and organisations out there who offer some help, but realistically, it will be family much of the time.
And this is a really rather scary thought. It’s too early for us to know how Tink will grow and develop, how independent a life she may lead and how much she will rely on us to support her. But there’s a good chance she will need us, much more than, say, J will. She may live with us forever, and that’s ok, of course. But bang goes the rosy picture of Dave and I enjoying some time together once the kids have moved out. We don’t get any time together as it is now – imagine that for the rest of our lives!
Then, of course, this leads on to the question we don’t really want to even think about right now, but will have to face at some point in the not-too-distant future: what will happen when we’re gone? Autism isn’t a life-limiting condition like some disabilities, so it’s an obvious conclusion to make that Tink will outlive us and what then? Who will take her on? Who will she live with, rely on after so many years of it being us? We already know she isn’t likely to adapt well to a change as massive as that, as well as what she would be going through emotionally at such a time anyway. How do we prepare her for that eventuality when we don’t know when or how it will happen? What happens if one or both of us become incapable of looking after ourselves, let alone an adult Tink? The more I consider it, the sadder I feel that we have to even think about these things. We always say that there’s nothing ‘wrong’ with her, that she’s just ‘different’, but really, when that difference means that potentially she’s unable to fend for herself in the world, I can’t help feeling an attack of the guilts that she is this way.
So, as the person in the Facebook post says, this is why we parents of children with additional needs fight so bloody hard for our kids now. Because we know that if we don’t fight now to change the world for them, who the hell else will do it when we’re gone?