Having a nonverbal autistic child - which, really, Xander isn't, since he CAN talk, but he isn't as adept as he should be for good, or even nominal, communication - is a challenge for many reasons I've posted about before. It's kind of comparable to having a baby who isn't old enough to talk - but in some ways, much harder and worse. You don't expect or need a baby to have a give-and-take conversation with you, but with a older child you do and need to.
The hardest thing I've had to adjust to with Xander is the hurting knowledge that much of his inner life will be a mystery to me, and that ranges from the superficial to the deep.
His birthday and Christmases are not fun times for me. To be honest, I've never been a Christmas spirit man. If I'd have been a Who, I would have taken vacation every December or gone crazy from all the cheer. That precedes my little guy. But with his autism, it's gone deeper.
You want to get your child things he likes. (And of course some socks and underwear style gifts, just to be a parent.) Other parents gets hints, clues, or outright demands for what their kid wants. With Xan, it's not so easy. Probably over half of the gifts I've tried to get him are metaphorically shrugged at, maybe politely tried for a minute, and then forgotten or ignored. Unless it's obvious, I'm probably going to be wrong.
Some things can be guessed at. He liked the first Tickle-Me-Elmo, so when the next version came out I got it. But the voice was just slightly different, a bit higher, a bit more obviously electronic. If I could tell that, to Xander it was probably like the difference between a cat's meow and a snake's hiss, and it just didn't fit. I was wrong, but at least I knew why. We thought he'd enjoy riding a horse at one summer camp, but a helmet was required and anything on his head bothers him immensely.
But other things I could have sworn he would like, he doesn't, and I have no idea. Same character or same kind of game or same kind of activity or whatever.
Because he can't tell me, all I have to go on is his reaction after the fact, and a guesswork game of why. Too loud? Too hard? Colors too bright? Figure not exactly like the character on television?
But even that, as annoying, painful and frustrating as it is, is nothing compared to the fact that I don't know my son like I want to.
Does he like football? He'll watch it with me, but wil leave a lot. Baseball? Soccer? Does he want to PLAY football, or baseball, or soccer?
I know he likes How To Train Your Dragon - who's his favorite character? Toothless, Hiccup, Astrid, Gobber? Why? I don't expect deep psychological bonding or identification, but I can't even get 'I like the color black' or 'He talks funny'.
Other parents can build a mental image of their child from their likes, their dislikes, what they want to do or be and what they don't want to do or be. They can use this for the most basic things, like ruling out gifts because of a wrong color or character. Or it can be used to shape their child - since he likes to read, let's discuss his favorite book; or since he enjoys this martial arts movie let's try them out on Tae-Kwon-Do. Or it can be used to know their child - he's going to be a athlete, a scholar, good with girls.
It's harder for us to get any information like that for the easy things, and often the things we do get to know aren't the fun kind.
Most of all, I miss the chances to have a give-and-take conversation with my son, where I can learn about him and know about him more and can explain what I know and feel. To have a chance to dig deeper and get something straight from him, instead of guessing at things. To be able to get the things I can use to help him, from getting the right gift to doing things he likes to perhaps getting him into things he'll resist but love later. And having him get me more too, of course - but I really want to get to know him.
He's my son, and I love him totally. But he is very much unknown to me.