First, a note: A big shout-out to those who have continued to check-in despite my abrupt and prolonged absence from the blog, thank-you, and I hope I didn't lose too many of you. If you gave up (and I don't blame you if you did, since I almost did myself...), I hope this finds you again. I won't bore you all with details - see, right off the bat I'm totally lying because I will, just, not yet - so let's get back to business, shall we? WE SHALL.
There has been a lot to write about the last few months. So much that I almost couldn't sort through it all well enough to write with any clarity. But there was one thing. One topic that kept popping up on other blogs, on Facebook, the internet in general... this alarming black spot across an otherwise vibrant autism collective.
The obvious disdain and often blatant dislike of parents, coming from autistics, was a real shock at first. It was difficult to deal with but also very difficult to understand, at least from my own experiences, and I found myself simply wanting, no, needing, to be heard. But there was no discussion, only walls thrown up, derailments, no willingness, at all it seemed, to believe that we're not all... awful.
And it actually made me angry, at first. How dare they? How DARE they judge like that? Without even knowing us. Without even affording us enough respect to hear what we have to say/offer. How can you talk about acceptance but not be accepting yourselves? I didn't understand. It just seemed too hypocritical and close-minded and wasn't something I felt I could put any more energy in to.
But over the last few months, that awful dark spot of division and mistrust defined itself for me, all the way down to its terrifying roots.
While I may not have been writing, I did not actually disappear. I've been here. I've been reading, keeping up with everything as always, just... quietly. Reading. Reading posts by and about people I knew had no respect for me or what I might write. Reading all of the comments, even though I usually make a point not to. Reading posts by people whom I admire and respect very much, both autistics and parents alike. I started to realize that this rift goes very deep and more importantly, that it is not what it appears to be on its surface.
At first it looked like a power struggle. A simple case of who has or should have, the most influence in the world of advocacy. And that was/is not something I have any interest in getting caught up in. No one wins those and too many get hurt along the way. But even though there are some real elements of that here and there, I believe the true heart of the matter is something else entirely.
It's mistrust. It's resentment - stemming from too many terrible experiences with misguided, ignorant, or bad people. But most insidiously, it's fear.
Fear of being humiliated. Fear of being mistreated, abused, bullied, and hurt. Fear, of being killed.
Yes, being killed.
Think I'm exaggerating? Think again. And not just by poorly screened/supervised/educated care-givers in money-starved or badly managed facilities, though the very harsh reality is that that happens all the time: http://www.news10.net/news/watchdogs/180510/449/Basic-police-work-ignored-in-autistic-patients-suspicious-death
And those are just a few of the higher profile cases. If you search, you will unfortunately find much, much more.
But no, it's not just strangers.
It's also parents. Parents who kill their own children...
... because they were autistic. As if somehow that could be an excuse. And this, sickeningly, is just the tip of the iceberg, if what I've linked here hasn't already made your blood run cold, go ahead and search it - you'll find a lot.
I don't know if it's because I have been relatively isolated for a long time on our funky little Josh-Planet, or perhaps that I chose not to pay attention to this utterly horrifying trend, but trend it is and I have really only just come to realize that over the last few months.
No bloody wonder many autistics don't trust us and would prefer to keep parents at distance.
Of course I'm not saying that all parents of autistic children are capable of murder, obviously they are not. But clearly a frightening number of them are. And that would scare the hell out of me too.
How do you do that? How do you kill your own child, disabled or not? You will not find me on the sympathy band-wagon for these parents.
I can understand how they get there, I can. I understand difficult. I understand frustrating. I understand heartbreak, despair, fear, anger, exhaustion, isolation, anxiety, desperation and yes, even hopelessness. I can understand all of it because I've lived it. I've been living it for almost 14 years now. But I also understand love. And unbridled joy. And happiness, tenderness, hilarity, amazement, wonder, curiosity, and did I mention LOVE? You know, that thing you feel for your children that is without limit? Without condition? That is a part of your soul from the moment you become a parent? THAT? Yeah, that does not come with an asterisk, just so you know. You don't get to say "I'm going to murder you, my child, because you are autistic and life is hard". You don't even get to spew ridiculous statements (that is seriously the worst thing I've ever read that wasn't on an anti-vax site or penned by Jenny McCarthy) like the bitter pill that is Hannah Brown... she is "surprised" that she doesn't love her autistic son LESS than if he weren't autistic? What? Because she somehow just expected that he would be less deserving, less her child, less her SON, just because he's autistic??? How did this woman get any kind of voice on the matter? It's baffling.
It's been a long road with Toad. If you've read the early blog posts and were here in the Fall of 2010 when things were really tough with his aggression, you'll know. And there have been some very dark moments. So I do understand how some of these mothers may have felt they had reached such an awful, hopeless point. It's the step beyond that I cannot find any empathy for. I know that all of our kids are different and that I can't truly know what it was like for these parents who have done the unthinkable. But I DO know what my job is - I need to keep my children safe... I need to protect them from harm, even if that means protecting them from myself. If I am in such a bad place that I think I might hurt my child, then I will figure out a way to make sure that doesn't happen. I will do everything within my power to keep my kids alive because that's my fucking job. Period. Pretty sure right up there at the top of The Parent Rule Book is "don't kill your kids". It's right before "eating them is also frowned upon" but after "love them within an inch of your life".
Through it all, right from the very beginning, I love my son. I love him as much as I love his brother, I love him so much my heart might explode. I felt that way before he was diagnosed, and after. Nothing changed. Why should it have? He's my son. I didn't mourn, as some people talk about when their children are diagnosed, I never have. Why would I mourn, I never lost anything? I HAVE my Toadie. I knew from fairly early on, that Toad was just... Toad. This is who he is, there wasn't going to be any "recovery" or "cure", just my sweet, french-fry-eating, Blue's Clues loving, Ugg-wearing Toad. And that was cool because this is his path, and mine to share with him, that's just how our story is going to go. I decided many, many years back, that the ONLY thing I wanted/needed for him was happiness. That's it. Nothing. Else. Matters.
I think killing him would probably be problematic in that respect.
Toad can love. He can be scared. He can be sad, frustrated, amused, angry, nervous, silly, or pensive. He is a person. A human being with feelings and emotions. He deserves to be treated as a human being by the rest of the world. He is not a "burden". There have been some times when I wasn't sure I could do this, when I didn't think I had what it took to be his mother. But then I'd look at him sleeping, so angelic and peaceful, the demons that were tormenting him while awake mercifully taking some time out - and I knew I had to keep going, I had to help my Toadie find his happiness again because I accepted that responsibility when I helped create him. You can't just turn your back on that.
And murder, is not the answer. Ever. And it's not something to be excused or sugar-coated because the victims are disabled. If anything, that makes it worse.
There is always help. The world is chalk full of people, reach out if you need to. I'd be willing to bet that even a total stranger would be happy you did rather than see you and/or your child dead on the 6 o'clock news.