It's been a while since I wrote about parenting - mostly because that's my wife's area of writing and because people that write about parenting so a non-parenting audience can understand just how hard it really is sound like assholes.
It should go without saying that we spend all our time and energy trying to ensure that our children have all the opportunities they can, are as happy as they can be and that we're teaching them as best we know how so they can succeed in any way we can prepare them for.
But I'll say it - we do. Everything we do is the long process of moving our children from this safe, tiny little world at home and into the big, scary world outside in a way that helps them feel ready and helps us not spend every second they're outside the home in a state of white-knuckled terror, wondering if they are ok out there.
I think this is the core of why raising a child with autism is so difficult - they don't experience the world the same way we do, inside or outside. Not only that but they don't experience our teachings about the world in the same way we do, or that we mean them to.
They experience the world in a fundamentally different way in almost every respect - I wanted to use the metaphor that it's like trying to prepare someone for something when you don't speak the same language but that doesn't do it since at least those two people experience whatever you're trying to prepare them for (the world) in the same manner and at least have that common experience to relate to.
The process of trying to imagine what the difference is like trying to illustrate one of those 4th dimensional shapes that computers can't even model and the human mind staggers at trying to even comprehend - My child's brain experiences things in such a way that is so fundamentally different that the way that my brain does that I can barely comprehend the differences, much less compensate for them.
A more fitting metaphor would be like trying to first invent a language to share with a person, knowing that you aren't looking at the same things - and you aren't ever going to get an accurate idea of what they are seeing - and having your new language first translated to one you don't understand, with different verbs and syntax, and then into their native language - so you can never be sure of the message you're sending or the condition it's in when it arrives.
This is hyper-dramatic. My little boy is actually very high-functioning and I am lucky in that way - he still experiences the world in a different way than I do not but the similarities are numerous enough that some people would never notice. But when I try to relate to what he's going through I have to accept that nothing I know may mean anything. I can see what happens around him and may have gone through the exact same scenario but I may never understand what he experienced in the same situation.
I might always feel powerless to help, and THAT is the hard part.
If you're trying to help someone in a wheelchair, you build a ramp
If you're trying to help someone that is deaf, you learn sign language
If you're trying to help someone that has autism you may never be certain what the challenges are and even if you did, you may never understand what exactly your child needs to take them on.
But you can't not try. You don't ever stop trying to find what helps, but that will never make it easy and it will NEVER free you from worry. You will worry every day of your child's life, like every parent does with every child - except you won't have any examples of what has worked in the past that you can apply directly to your child so you can tell yourself that you taught them what they needed in the way that works best. You can never know that, you can never relax, you can never be sure.
And then you will worry that the things you try are making it worse, that your constant trying itself might be a problem, that your constant worry might be encroaching on your child's happiness, even that you might be part of the problem....and what you could do about that.
It's the uncertainty. It is hard. It is exhausting.
If you gave any parent any given scenario about their child being in danger or needing help and asked them what they would do, they would probably stare at you like you were stupid. That isn't a question. There is never a decision-making process, you just DO what your child needs and you never even need to ask yourself if there's any other option.
It's like the human interest stories they always trot out on Oprah or whatever - the parent that throws themselves over their kid in a tornado and takes a 2x4 through the spine. They didn't decide to do that, it was never up for decision. It was certain. Not to belittle the sacrifices any parent makes, but that is EASY.
Imagine taking that parent (which is every parent) and put them in a room full of unlabeled buttons and switches and flashing lights and tell them that their child needs help...needs them to DO SOMETHING but nothing to indicate what that might be - you would see something truly hard to comprehend. Something truly heart-breaking to watch.
Uncertainty. Stress. Fear of action. Fear of inaction. Second-guessing. Heartbreak. Sorrow. Self-Doubt. More fear. Anxiety. Crippling anxiety. You would see parents offer to trade anything, including themselves, just to know WHAT to do, so they could just do it. But that isn't an option. You will see them hate the world for being a place they need to protect their children from. You will see them hate themselves for failing to do so. But still...You must do SOMETHING.
I try to keep reminding myself that we're doing something. That we're trying. That's all we can do.
At least we can see our little boy and he can communicate with us, we can see when he's happy and when he is not and at least we can know when our actions move him in one direction or the other.
We might not know what to do, but we have that.
Many people raising kids with autism do not have even that, and my heart goes out to them.
1 comment:
*heart*
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