There are times when raising children with disabilities is like walking through a wilderness, like an exile from the communities around us, to use a biblical image.
That’s not because of the children themselves, nor is it the disability. Don’t get me wrong – things get tiring and frustrating and nerve-shredding – but it is what it is, and acceptance is the first step you have to make in getting your family through this. No, the Wilderness is something else.
The Wilderness is all those people who think you’re exaggerating your experiences, or even that your child’s difficulties are all in your head.
The Wilderness is filling in brutal government forms that ask you to justify every scrap of support you get while writing down, in black and white, every single negative aspect of your child’s life, balanced by none of the positives, the successes, the joys.
The Wilderness is reading of the desert experiences of people with disabilities who lost their support and saw no other option than to take their own lives.
The Wilderness is when people think you must not be praying hard enough for your kid to be healed.
I’m a step-dad, and coming into this late, these things have shocked me. I was naive enough to believe that support was there for those with disabilities, that people were treated with, if not respect, then with a sort of well-meaning bumbling empathy, the sort of clumsy sympathy I’ve found myself doing over the years. I’ve learned the hard way that there’s a darker side to all this: when you’re stuck in the Wilderness, there aren’t that many people who’ll help you find your way out. Sadly the church isn’t always great at this either; some of you reading this feel like exiles from your local congregations, through no fault of your own, through no fault of your kids.
I’ve written about this a lot over the last couple of months, and I’m probably sounding repeating now. I think all these pessimistic posts, and the more positive ones sitting there in my notebook, are a way of dealing with the experience of exile.
See, there are different responses to being stuck in the Wilderness. Wandering around lost is one, and an understandable one. But it’s not sustainable; sooner or later you’re going to starve. So maybe the first thing you do is buddy up with others stuck in that same Wilderness to see if you can find a way out together.
Or you can figure you’re going to be there for a while, so you start to adapt to the terrain; the image of The Autistic Gardener team making a weird oasis in a desert wasteland is stuck in my head; creating something new is sometimes the only way to survive.
(One of the first things we learn about God is that he’s a creator.)
Or, by ingenuity and good navigation skills and sheer bloody mindedness, you figure out how to escape the Wilderness, how to find your way back to civilisation and convince those you find there to provide signs and fences and provisions and shelter to prevent others from getting lost in the desert in future.
But here’s the thing – whatever path you end up on, God’s always been in the Wilderness, wandering with his people. He may light the way out in a pillar of fire, or he may just pitch his tent next to us – either works. But he’ll be there. That’s one of the things that need to be accepted, even though it’s damn hard at times.
Still, the church isn’t just a monolithic organisation, nor is it just a bunch of local congregations singing and holding coffee mornings. It’s the Body of Christ and we’re all part of that Body – whether we’re disabled, whether we’re feeling lost, we are the church through our relationship with Christ.
And so I have to believe there’s a way out. Because we’re part of the Body not brcause someone gives us a membership ticket but because Jesus says we are. Because while I’ve had many doubts in my life, and been eaten up by resentment, I’m sure that God loves my kids, and I have to trust he loves me too. And while his church may sometimes, either by mistake or through willful ignorance, be silent, the God who camps in the desert won’t be.