Disability Parents and the Church: Do Not Be Afraid

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We heard it again this week, in a casual conversation. As so often happens, it wasn’t even solicited, a pre-emptive answer to a question we didn’t even ask, for goodness sake: “Oh, our church couldn’t cope with your children. We wouldn’t know how.”

It’s hard not to come away from stuff like that feeling angry and frustrated. It never gets any easier, seeing your children ‘Othered’ so casually. So many churches like to believe they love everyone equally; the truth is, we love some more equally than others.

The thing is, I don’t think this is rooted in prejudice or deliberate policy. I genuinely think this stuff happens because people are scared. Scared they don’t have the resources, scared they don’t know sign language, scared they won’t know what to do in the event of a meltdown, scared they don’t know how to talk to someone who communicates in grunts and shouts. And when people get scared, the barriers come slamming down.

But here’s the thing: fear’s only helpful if you’re being chased by a rabid grizzly and his mates and you need your fight-or-flight impulse to kick in before you’re eaten. Meanwhile, biblically speaking, “do not be afraid” could almost be God’s catchphrase – he shows up and it’s often the first thing he says:

In the face of danger? “Do not be afraid.”

In the face of a difficult future? “Do not be afraid.”

In the face of your enemies? “Do not be afraid.”

In the face of angels and miracles and the Holy? “Do not be afraid.”

When you’re sitting in a room with children with disabilities? “Do. Not. Be. Afraid.”

Look, I’ll be honest here: sometimes I find life terrifying. I’m scared of how we’d stay afloat if I got made redundant or couldn’t work. I’m scared of what would happen to the boys if/when something happens to me or my wife. I’m scared I’m not good enough at this whole parenting thing because I look around and other people seem to be so much better at it than me. I’m scared that statutory authorities are throwing disability services under the bus as part of their ongoing cuts. I’m scared of the phone call that announces the next bout of mickey-taking random lunacy. “Do not be afraid” is often easier said than done.

But that’s external stuff. My children? They’re not frightening. They’re intelligent, loving young people with individual personalities, quirks, likes and dislikes.  They have additional needs, sure, but they’re far more than their disabilities. The Church Universal and Triumphant doesn’t need to be scared of them, because like everyone else they’re made in the image of God and he loves them, cares for them and wants to see them integrated into his family. All those times Jesus reached out to those considered to be on the fringes, out of the mainstream, the marginalised and the “scary”? He’s our role model. If he’s not, if the Holy Spirit isn’t working to constantly make us more like Jesus then our churches are just social clubs and they won’t change a damn thing.

But beyond that, I need to trust that God has our backs, that he prepares a table for us in the presence of DLA forms and austerity cuts and societal ignorance. When we’re clinging to the cliff face by nothing but our fingernails, I need to trust that God will catch us. And I’ll be honest, I find that so hard because in this jenga-esque life it feels like we’re just one wrong move away from everything crashing down.

And yet we’re still here. We’re still standing, still laughing, still eating and paying the mortgage and looking after two wonderful children who are growing up safe and healthy. God has brought us through a hundred storms, and though I still get nervous every time I see a cloud, he’s there beside me whispering “Do not be afraid.” Even when the clouds are dark and the lightening flashes. Even when I’m not listening.

Maybe I should listen more, right?

Maybe we all should.

Do not be afraid.

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Autism Parents and the Church: Exile

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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.

 

 

Autism Parents and the Church: Sabbath

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‘Lost Sheep’ by Douglas Ramsey

Sometimes, things get too much.

You’ve run out of tolerance for being yelled at or hit. Or you’re fed up of arguing with doctors, with schools, with random passers-by. Or you’re sick of the staring and the tutting and the whispered comments. Or you’re tired of the guilt and the stress and the routine, you’re tired of being tired.

There are so many autism parents who, for a thousand and one reasons, don’t get to go to church. And that can mean that each day becomes just like the last; seven days you labour with no end in sight. You don’t get to stop, to reflect, to press pause and breathe. You don’t get to rest your soul, to feed your spirit, to lie down in those symbolic green pastures, to drink from those metaphorical still waters.

You don’t get to Sabbath.

(Sometimes you don’t get to Sabbath even when you do get to church, because the two things aren’t identical.)

Parenting in general is already 24-7; autism parenting can be like trying to bend the space-time continuum to squeeze a few extra minutes out of the ether so you can recover from that meltdown, finish those jobs, hide under that duvet. There’s not a lot of room for a Sabbath. And that’s a problem, not because we need to be legalistic but because we need to survive. We need to rest and recharge, recover and reboot. Life happens, and without the opportunity to deal with it, to put it to rest, to achieve some form of closure on the latest blow-up, things can get toxic. You and your kids need that release valve.

So forget the idea of mandatory church attendance and how your granny didn’t let the budgie sing on Sunday, Sabbath is about resting, finding spaces – however big or small – in which you can spend time with God before the world comes rushing in again.

(Cam a commute become a mini Sabbath?)

Carers face a whole range of risks to their mental health. Sabbath isn’t an empty ritual, it’s a physical, emotional and spiritual survival tactic. And the beauty of it is that you can tailor it to your situation, because all of our lives are different and God’s more interested in a relationship than the specifics of how you express that relationship.

It’s Good Shepherd Sunday today. I didn’t know that was a thing until I saw someone reference it on Twitter, but throughout the world, people will be reading and thinking about Psalm 23. And perhaps there’s an opportunity here, to make that Psalm a prayer, to ask God to show us the reality of that poem, to be with us in the face of our difficulties and our exhaustion, to restore our souls as we give out to others.

And if you don’t get to go to church, you’re still part of God’s family. In John’s gospel, when Jesus talks about being the Good Shepherd, he mentions the “sheep” who aren’t with him physically there and then, like the twelve disciples,  but who are still part of his flock – his family. If attending a local church is too difficult, you’re still part of the Body of Christ. You don’t have to walk through church doors, but if you can find other Christians who know what you’re going through, Jesus is there in the middle of that, even if that’s in a coffee shop, even if that’s on Facebook.

We work damn hard. Sabbath’s how we’ll keep on doing that.