I love to read, and pick up a lot of lines or quotes that stick with me. Some of them fall away as I grow up, some of them stay, and a few of them get more true.
In The Talisman, by Stephen King and Peter Straub, a boy named Jack has pulled Wolf, a werewolf, from his non-technological home world into our 'real world', and they're hitchhiking cross-country. Jack is getting sick and needs to rest, and decides to go to a movie theater, where he can sleep and Wolf can watch the movie. It...doesn't work very well.
I read this when was thirteen, and these lines from that scene always affected me, for the pure pain of bravery not noticed or understood: "Jack would never know of Wolf's heroism in the next few minutes. Wolf did not really know of it himself. He only knew he had to try to stick this nightmare out for Jack's sake."
I often think of them, in the back of my mind, when I wonder about Xander and what he goes through.
We try to help him when we can, try to minimize or lessen what he has to go through that hurts hiim. But we can't, nor really should, make his life completely antiseptic and safe. Life is here, life goes on, and if he doesn't have a chance to get used to things that bother him when he CAN, it will be so much harder for him to do so when he HAS to. Doesn't mean we're going to throw him into a situation we know will be hard for him just because we could - but there will be times he'll have to suffer through.
Of course, there's the word 'suffer' there...an exact choice by me.
In every restaurant we go to, he usually has to cover his ears when he's not eating. The ebb and flow of conversations and noises around him probably combine into a mad rush of sound to him, disjointed and confusing, like trying to get words from a babbling brook or trying to listen to six different radio stations at once. He can handle it - but it doesn't look fun to do so.
I said in another post he has certain parts of songs and TV shows and movies he really likes and would play them over and over, given a chance. There are a few others we know of that are the complete opposite, where he will have to leave the room for a bit if we don't skip over it and come back when it's done, or he gets upset.
Those are, if you will, 'normal' things, things you can plan for and get ready for and get around, usually. When there are new things, they're generally not total surprises, more like 'Oh! Okay, I see that," moments.
But then there's the unexpected times.
It has not been a fun time for Chez Robinson. While I was fighting off pneumonia, apparently a late order of bad karma also came in - all at once. We had a pipe leak outside, flooding the finished basement, making us throw away several bags of ruined stuff and many books too. Had to get an emergency plumber out, they had to dig up the yard, kick off the water,, pretty much anything and everything you can imagine going wrong all at once.
While all this was going on, Xander had some problems. Nothing too huge, but in addition to everything else going on - me being sick, the stress of cleaning up and losing things, the juggling of getting people out to get things fixed, dealing with no water while cleaning up soaked boxes and books - well, at times like those, any smoothness is appreciated. And for whatever reason, Xander just couldn't - we had some fits. Could have been the strangers in the house, or the noise of the backhoe tearing up the yard, or getting little radar-pings from Tracy and me while we dealt with the crud. But it didn't help. And yet, I don't know how much he did take before it got to be too much for him. He could have only lasted five minutes, yet in those three hundred seconds displayed more courage and toughness than a legion of superheroes.
Or when my mom died suddenly. He did really well, dealing with the immediate aftereffects of us having to help get everything ready for the funereal, even coming with us to the funereal home as we picked stuff out - remember,, babysitting is not something that's an option to us. The long travel to her final resting place, a strange hotel, dealing with mine and Tracy's grief and his own, which I mishandled badly. For anyone, this is tough. For him? There is no word, probably - and I don't know if I even want to know a word for it.
Sometimes it's hard to see beyond the frustration of having do things differently, triple-plan everything and be ready for problems. There are times you complain, whine and moan to yourself that, doggone it, this is kinda tough raising an autistic child. And it is - PTSD like a soldier's.
One thing that just as quickly comes to your mind, though, is however tough it is for you, it is infinitely and incomprehensibly harder and worse for your child. Your stress is not to be minimized, but compared to your child, it is minimal. Every day, these kids displays a grace and heroism that no one else can understand, but that a parent can sometimes see if not understand.
When people ask me to list my heroes, I always list my son.