Tuesday, August 30, 2011

Reality in Disabled Parenting

In which Eleri rambles long about rose-coloured glasses, and how our society has failed parents.

On a usual day, I avoid articles about disabled kids, because they tend to irritate the heck outta me. Why? Because 79% (not a scientific measure) of them follow the same format:
LOOK! Parents of disabled kids! That must SUCK! See how they have perfectly structured their lives! See how they are always upbeat and positive! See how they are Fantastic Parents, event though their job is SO MUCH harder than yours! OMG THEY ARE SO AMAZING!!!

Yeah, frak that. Even the stuff that parents of the disabled pass around can be so sugar coated it causes insulin shock. Ever seen that bit "Welcome to Holland"? Evidently having a disabled kid means you have to be OK with not going to Italy, you've ended up in Holland instead, and aren't the tulips beautiful? Uh, no. How about thought I was going to land in Rome, and ended up in the Gaza Strip instead?

So seeing this article in a mag while I was watching Blade get his hair hacked off, I was planning on passing it up, and for some reason I didn't. It ended up being the first time in mainstream media that I saw any glimmer of realism- the parents stress. The mom admits to yelling not nice things at her kids. It touches on the fact that society does crap for these families. Outside family members admit to not wanting to deal with it. It hints at the lack of social interaction, the isolation, the sheer weight of it all.

Is it a deep, dark expose? Nope, but people don't want to read that sort of thing. They want positive, upbeat stories. And you know what? Parenting a kid with disabilities DOES HAVE positive, upbeat, heart swelling-joy making-Lifetime Original Movie-Hallmark Card moments.

But it also doesn't. And that gets shoved under the rug until you hear of some crazy person who beheads their disabled son.

Even books that are meant for disabled families, that are collections of personal stories, the writers are quick to qualify any feelings of despair, any moment they failed to be a loving, joyful parent. The main message is "it doesn't matter, you have to focus on the good stuff."

You know what? Focusing on the good stuff is a Damn Good Idea. It isn't all gloom and doom out there in Disabled Kidland. But it is a draining job- emotionally, physically, spiritually.

By drumming the 'Must Be Positive!" message, by saying things like "God never gives you more than you can handle", we are invalidating half of the experience of being the parent of a disabled child. We don't give parents an outlet for "what if I'm not handling it?" We don't give them permission to honestly say "I really just wanted to put a pillow over their face", and have it be met with empathy and support, rather than horror and disgust.

When someone says "I don't know how you do it!" or "I could never handle it!" We're supposed to nod, look demure, even self-depreciate "Oh, you just do what you have to". Sometimes the answer to "I don't know how you do it!" is "I'm not. I spend every night crying. I haven't had a real shower in a week. My body is literally breaking down from the constant stress. I have to work to feel love for my child." People don't want to hear that. They don't want to know that someone they know is suffering, especially when there's nothing they can (or will) do to help.

We, as a society, don't give these families the right to stumble, fall, break. There's no place we can go and say "Please, I just need someone else to be in charge." There's few options for respite, little to no in home support, no resources for picking up slack anywhere. There's no "Parent Protective Services" anywhere for if your kid beats up on you, or has worn you down to less than nothing.

Every book on parenting a disabled child out there says it, ask any doctor, psych, therapist etc- and they'll say it:
The ONE thing that every special needs parent out there NEEDS to have is regular respite. They need a break.

It boggles my mind just how a simple thing like providing trained respite care, just giving the parents a break they know they can count on, can plan for will make life better and easier. And it doesn't exist.

Go Google respite, and you'll find 101 articles on the need for respite for caregivers of the elderly, the risks of caregiver burnout. Hundreds of links for agencies and companies galore that have tapped into the concept 'taking care of another human being with high needs is hard work' and made it an industry- but only if that person with high needs is elderly (or, sometimes, a disabled adult).

Parents are left out of that equation. It's our job to be the primary caregivers, not like someone who's caring for an elder parent out of the goodness of their heart. We're obligated as parents to keep going, and going and going like the Energizer Bunny- and it does not matter if it kills you, because that's what a parent does, right? Suggest needing a time out, and people will invariably say "but you're the parent!

Something has to change. It needs parents to stop sugar-coating their lives. Stop always wearing the mask of "hanging in there", and tell your stories about the valleys, as well as the mountains. Start making a loud noise about how much money is being spent every year on stress-related illnesses. Talk about how the deaths of disabled kids at the hands of caregivers could be prevented by lifting the burden every so often. Talk about how even the best, the most loving parent in the world, can (and will) break under the constant strain.

Maybe, when we aren't so worn. When we all aren't trying to be superhuman parents. Maybe then we'll be able to grab the bullhorn and start advocating. Or maybe, just maybe, other people will perk up, and be our voices.

Sunday, August 07, 2011


If you haven't been paying close attention, you probably missed that there was, indeed, a Mysterium this year**. The well attended and superfun gathering just wrapped up today with the announcement that Mysterium 2012 will be next summer in Seattle, WA; and that Mysterium itself is will now be under the umbrella of the Falling Man Group not-for-profit organization.
Snazzy stuff!

**long story, not worth rehashing, all props to the Boston crowd for pulling this together.