September 16, 2013
Murder, Suicide And Autism – Oh, The Humanity!
I need to talk about something.
I’ve been struggling with it for a few weeks, trying to find the right words.
Me, who is usually the first, and quite often the loudest. I just didn’t know what to say.
It all started with The Letter. You know the one, sent to Max Begley’s family by a “neighbor” who wished him dead. That’s not an exaggeration. This person suggested the world might be a better place if the 14-year-old autistic child were simply euthanized, put down like a troublesome dog.
Oh, the humanity.
I read post after post as one by one my blogging friends said their piece. It was on the news, on the web, everywhere. People rallied to the Begley family’s defense. Autism awareness at its finest, brought on by the worst in someone.
What inspired that sort of vitriol in a neighbor? Intolerance? Impatience? Simple weariness and fatigue from having to deal with the anxiety being around someone with autism can often bring?
How awful for them. Having to hear a child who cannot control themselves be loud day in and day out. I’m guessing it was a serious disruption to the otherwise blissful tranquility of their lives. How can someone be expected to live like that? In the same neighborhood?
It’s so easy to feel sorry for people who are forced, against their will, to have to accept autism as a part of their daily lives. They never asked for this. They simply wanted a nice place to live, in relative peace.
People who are out shopping, trying to get on with their busy lives, can’t be bothered by autism. Children who can’t conform to social norms (like being seen and not heard, happy little Stepford children), need to be left at home.
A comment left on a friend’s blog said almost exactly that. On A Sweet Dose of Truth, Jo poured her heart out about the rigors and responsibilities of shopping with an autistic child. It can be a harrowing experience, and not just because of a meltdown. The other people in a store are just as much of a wild card as your own child in that situation. You just never know who will be patient and kind, and who will not, in a most vocal manner.
Amongst the commiserating and tears and relief of finding a kindred spirit in the comments, one person spoke out. He didn’t agree with Jo at all.
You won’t like to hear this but here goes. Polite society has certain rules. One of these is that we do not, in a public place, have a meltdown. If one cannot control ones urges to meltdown, then one doesn’t belong on public. Get a sitter and keep your kid at home, or immediately remove him from the store, but the fact that you have a genetically defective offspring should not under any circumstances be the problem of the rest of society.
He’s not just upset that a child is melting down (which, if you understand autism at all, is vastly different than a tantrum and is uncontrollable), he’s in the same camp as the friendly letter-writing neighbor.
He doesn’t think “genetically defective” humans should be out in public, around the normal folks.
Autism parents face a lot of obstacles just getting through the day, let alone having to deal with things others take for granted. Taking an autistic child grocery shopping. Or out to eat. Or to get gas for the car. Any and all of these can be a catalyst for disaster.
It’s the bigger picture here that has me troubled. The idea that parents should not burden society with their autistic children.
Think about that.
Most people don’t sign up to be a special needs parent (and my love and light to those amazing people who do). Most of us are just regular folks who are heading down a different path than we originally expected. We’re flexible, we’re tolerant, we’re strong, and we’re vigilant not in spite of our children, but because of them.
Which brings me to Kelli and Issy Stapleton.
Issy is 14 and very smart. She is also prone to violence. Extreme, life-threatening violence. She requires a lot of intervention and support. Until recently, Issy’s mother Kelli was her primary support, her main champion. She maintained a website, The Status Woe, chronicling their lives and Issy’s journey. Kelli was very candid about their challenges and triumphs, and was actually a leading voice in the autism community.
She is well known and respected.
She was a good friend to many.
On September 3rd, 2013, Kelli tried to kill both herself and Issy.
They survived, and against all odds, Issy is now doing quite well. But Kelli is in jail, both literally and figuratively. Many who called her friend have put her in a box and pushed her aside.
It’s just too much to deal with. Too much to accept.
Kelli was a strong special needs parent. She was an advocate and a fighter. She was the one we all looked to when the going got tough and the days seemed just so very long.
I often thought of Kelli when things got especially rough in our autism-laden life. Kelli stood tall and strong, even after her own daughter battered her and sent her to the hospital time and time and time again. She got knocked down, and got right back up, ready to try something new. I especially enjoyed reading one of her last posts, where she detailed the latest routines and regimens she’d incorporated into their everyday life. I was fascinated, watching how she interacted with Issy, and taking hints from her “tool belt” of support items she carried at all times.
Just days after I read that, Kelli broke. I heard the news and all of the air was sucked out of the room. Everything went silent.
And I lost my ability to speak. I just didn’t know what to say or how to say it.
What comes to me now is this. Special needs parents are not innately special people. We are human beings with faults and trials and tribulations of our own, who happen to have children with additional challenges.
We bend, and sometimes we break. Even the strongest of us.
Autism parents often deal with stress from the moment they wake up until the moment they fall asleep, if they’re lucky to get sleep at all (for an excellent chronicle of sleep deprivation and autism, please visit Sleep Deprivation Diaries).
The outside world presents its own challenges, in almost every way imaginable. For me, it starts with school drop-off. I am constantly given the side-eye when I roll my minivan into the teacher’s parking lot (where you are not supposed to be if you are not a teacher, of course), so that my child (who “doesn’t look autistic!”) will not run into the street or down the block.
In my family, we plan shopping excursions for when my son is in school, or in the morning when his patience will allow for it. But there is always that time when we absolutely must take him with us at an inopportune time, and it’s stressful. I have, several times, carried my screaming and kicking child away from the self-checkout so my husband could finish without us. I have peeled him off the floor where he’s blocked the exit doors.
I have endured people scolding me in Target, questioning my parenting in Border’s, telling me that “countdowns aren’t a good parenting tool” on the sidewalk, and muttering under their breath as they shoot me nasty looks at school.
And through it all, I’ve been able to look at Kelli and others like her, and go on. Because if she can do it, I can, too.
What people need to understand is it really does take a village. If you think the autistic child down the street is bothering you by screaming and running around naked, how do you think their parents feel? Is it possible, perhaps, that the parents are dealing with more than inconvenient noise?
Suggesting they euthanize their child isn’t helpful, by the way.
Telling people to keep their “genetically defective” children at home and out of the way of decent people just trying to shop isn’t helpful, either.
Both of those things are not just gross, they’re very reminiscent of a little something that happened when a bunch of Germans decided they didn’t want genetically undesirable people around anymore.
You can’t know a person or a family by what you see through your bedroom window. Or by what you encounter in a public place. Or by what they write on the internet.
You have no idea what someone is dealing with, unless you take the time to find out. And you never know when that snide remark, or hate-filled letter, or nasty look is going to be the last straw.
I don’t think Kelli tried to murder her child because someone was rude. I do know by reading the last post on her blog that one person in particular set things in motion to destroy a plan they had worked very hard to devise. I also know Kelli thought it was her own fault that it happened. That doesn’t make her actions conscionable or any easier to understand.
I am not defending what Kelli did. But I am not vilifying her, either. Kelli broke. For whatever reason, she believed the only answer for her child and herself was to die.
This is why we fight for autism acceptance. A community of people who accept and understand autism does not judge and ridicule, it empathizes and supports. They do not strike out, they reach out. They do not shame, they help.
Would a little support and help have changed Kelli’s mind? We may never know.
But there is someone out there, one weary parent, who just might listen. Someone who needs compassion, a lifeline, a shoulder. Someone who needs help before they make a decision they can’t take back. Someone whose strength is waning.
Strength needs to be nurtured and maintained, it’s not static.
Accept autism. Be aware of the people who live with it every day, and the people who love and care for them. If you think someone is struggling, reach out. Lend an ear, some time, or just a shoulder. It’s the little things that make up the big picture. Your small gesture may make a big difference in someone’s life.
If you are a special needs parent and you think you’re beyond help, please know you are not. Please get help. Reach out. There will be hands reaching back. Always. If you just need to talk, I am always available via my email here, on my website, or on my Facebook page, or I can help put you in touch with someone in similar circumstances. You are not alone. Ever.
Image Credit: Thinkstock.com