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.
"God never gives you more than you can handle"
This (and the other things you wrote) made me want to pull my hair out. It was a trite and pithy way for people to feel like they were helping, but all it did was reinforce the fact that I had. no. help.
This is such a good post, hon. *hugs*
What was it Mother Theresa said? "I know God will never give me more than I can handle, but sometimes I wish He didn't trust me so much."
I ache for you and Blade. And I hate that we can't help (due to both distance and our own physical limitations).
Hear, hear! Well put, Ma'am. Your words need to be heard loud and clear...
It shames us all that parents are allowed to sink into despair. A body can only take so much.
Strength to you,
The Plague fairy
WELL SAID! Until we face the ugly parts of parenting a child with special needs, we can't improve these areas. Thanks for calling society out on it! If parents like us don't, who will?!
Thank you, thank you, thank you for this. I can't tell you how much I appreciate and agree with the stuff you said.
As the parent of 5 disabled children, one with some major psych issues, I can't tell you how much you are right!!! 3 of my kids do have some respite at a wonderful program called "Casey's Place" in upstate NY, but the one I REALLY need respite from, failed out of Casey's Place and now we are without again. It is hard. Very hard. No sugar coating given here.
Thanks for the great article. We need more.
Husbands help, I guess you'd say, for as long as they can. This is supposing they stuck with us from the beginning. They do get older than us on the average but in our situation as parents of disabled kids, it comes sooner. Then we are really stuck with even less support than ever, and we are experiencing aches and pains of growing up (older) as well.
Respite has never been reachable for us. We have been primary caregivers for so long even when our kid was in a group home. We still had to carry the load for those people who were suppose to have her needs at heart. Some did many did not. It was useless to try to work with them. They were always on the defensive, and always made us feel outside of the plan, if there was one. So now we do it all ourselves. We hire and train and fire , but the mix of people even wanting these jobs is few and far between. Or is it that people just don't want to work? We've been fortunate in some cases and in others the baggage the new employees carry with them to our place is more than we even want to think about. We just have to work through it all.
Government isn't interested in giving us any real relief. They think parents should do it for 55 years and forever because they are parents. For nothing that is. And if they do find placement outside the home they make no assurance that the jobs of caring for our ultra-exceptionally needful kids are being financed to the proportion of those needs. Thus all fails.
The way we are doing it seems to work best, and the question as to who is to do it after us is simply whoever is left. That's how it is in every other situation when people are hired to do caregiving. And yes, there is family now in line who may, and who we hope, but we do not have God's total blessed assurance about, that relatives will to do wisely anymore than group home agency people would do if they lost their staff as they so often do.
So well said. I think this is why most of my friends are also parents of disabled children. Because we all get this, and it is impossible to explain to others.
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