If you aren't a parent of an autistic child, I will never be able to explain it to you in words you understand. In exactly the same way, if you were not a parent, I could NEVER fully get you to understand what it means to be one. I can explain it, and you could think you understood it, but you wouldn't get it. Not really. That isn't because you aren't capable of it, it's because it's meaning isn't visited upon you until it has you in it's grasp - and by then, it has you.
The problem is sometimes, that we write and try to show you the good things. We want you to see how we're coping, and how things are coming along, what our strategies are, our victories. I don't know why. Maybe we want to show you we're doing ok.
My heart breaks reading through her blog. I see someone going LOOK I HAVE A PLAN LOOK I AM DEALING WITH THIS. And she's trying really hard, so super fucking great kudos to her. Because that's awesome. But we also get to be human, we special needs parents. We get to be angry, and we have to know that just like the "typical" parents of this earth, no matter how hard we try our lives are going to go off kilter. We can't plan away our autism, we can't say if we do XYZ everything is going to be better.
Nothing hinges on ONE thing. Not in anyone's life. Right now I have a 9 year old boy in a pullup saying "Did I poop? Did I poop? Did I Poop?" over and over and over. He did not. I am not going to ever let ONE thing define how I proceed. My world is bigger than one failure or one success. My world is multifaceted.
I was thinking, as I'm waiting for the Beta Test of Elder Scrolls Online to download, that being a parent of a special needs child pushes your character in ways you didn't know you could be challenged. It's definitely not all good.
Under the category of NOT GOOD
- How hard you can cry
- How lost and alone you can feel
- How people stare at you and your child
- How people don't know what to say and are awkward around you when they find out
- How no one can babysit or will (Emma excluded bcse she is awesome)
- How you feel guilty even thinking about asking someone to babysit
- How no one understands
- How you want to cut the next person who brings up Temple Grandin
- How you want to cut the next person who says they are the most brilliant people on earth
- How people tell you which diet/pill/quack therapy they've done
- How tired you are of Rain Man
- How tired you can be
- How emotionally empty you can feel
- How disappointed in the world you can be
- How your dreams can be killed
- How much guilt you can feel (is this my fault?)
Under the category of GOOD
- What love is.
- What joy actually is.
- How strong you can be.
- That it's ok to cry. Yes even that hard.
- Who actually loves and cares about you.
- That it's not only ok to be selfish sometimes, it's important.
- That small things can be amazing.
- That nothing is to be taken for granted.
- How well you can function tired.
- That other people actually have it worse than you.
- How to appreciate what you actually have.
- That your dreams weren't killed, they were just changed.
- That you define your own world, and most people don't know that.
I sat in a meeting once, learning about waivers and other government things, and listened to parent talk in desperation about their children, and what would happen to their children when they died. One woman said she had realized she was going to have to simply kill her child, then herself, because no one would take her child when she died. She was in her late 50s, and was completely serious.
This mom in Michigan, who snapped/broke/gave up, wasn't so alone or without resource as that lady. But her desperation was just as real. She made a choice that for whatever reason seemed right. I can't imagine what it was that made it seem right. I had to quit reading her blog, because I see in the retrospect of her words the building desperation and tension, despite the smileys and gifs and GET IT DONE attitude.
When I look at my first list, I remember to look at the second. I want all of my days, and I want my children to have all of theirs. Even on my blackest day, I never walked into that place where such a thing was a good idea. I think I'm lucky.
I think that place lurks for all of us, and we have to find the path to stay out of it.
Every single day.