Like any parent, I have a lot of hopes for my children. You bring these little persons into the world and try to teach and guide them so they can stand on their own. You wish nothing but the best for them, and wish with all your heart, that they will succeed in their life better than you. You’re fearful of the world, and what the world may do to them, but you know if you give them the right tools, they will be just fine.
Yet when you have a child with High Functioning Autism, the fear is magnified a hundred fold. The deck is stacked against her from the start.
We’ve only been on this rollercoaster of learning about our Autistic daughter for a little less than a year now. Dozens of meetings with doctors, counselors, school staff and reading. A lot of reading and research. At times for me, the challenges of giving my daughter the tools to have a happy healthy life are daunting. It can make you feel very small, very ignorant, and very angry.
Anger is my biggest problem. Most people don’t see my anger. I’m usually considered a jovial guy, even when subjects come up in the course of conversations that normally piss everyone off, I’m the guy who takes it all in stride.
Except when it comes to my kids. I’m very defensive.
Yes of course you should be defensive of your children. I’m not a helicopter parent, more of a military drone style. I’ll let it go on for a bit, then come in low with missiles ready to fire and blow you up verbally. It’s not a good trait, I don’t like being like this. But, it’s my kids. Still, until my wife pointed out that this drone style of attack wasn’t helping the situation, I had been lashing out.
She was right of course, I was wrong. I ran afoul of my own passion to defend my daughter, just to exacerbate the situation. I need to find a way to redirect, to work on getting those who can understand Alexis, to understand. Those who are incapable…well to just let it go.
Fairy Brides are Quirky.
For years I have been an avid Folklore buff. Mostly British folklore. In those stories that I have read and re-read, I have run across the Fairy Bride. A quirky set of tales that have not made it to Disney yet. Yet these tales help put things in perspective, and makes me wonder if Autism was a foundation for the tale.
Fairy Brides are a big part of British Folklore. A man meets a beautiful woman and marries her on the spot, so to speak. Yet his bride is quirky, she has trouble adjusting to the mortal worlds social norms. Fairy Brides tend to cry at Weddings, and laugh at Funerals. Much to the consternation of the mortal husband. They do socially inept things that often cause the husband to have to admonish his wife, to try to change her, mold her into being a ‘Good Wife’. Often the story ends with the Fairy Bride leaving the husband, his life now in ruins.
While the moral of the story is one about the fallacy of Love of Beauty alone, (for Fairy Brides are the loveliest of creatures) it also makes me think of Autism. A woman, from another plane of existence, has to adjust to a world that just doesn’t make sense to her. A world that demands she conform, behave as they expect her to, not as she is. Yet she never does, and in the end, goes back to a world that makes sense to her.
This is a problem I face with Alexis. Not so much her, and her autism, but to how others react to it.
Some people just believe that we are bad parents. That we need to correct her more. Others feel she is conning us, twisting things around so she can get her way. They get confused by her actions and react badly because they just don’t understand that she does not think like they do. That social norms they take for granted, are not to be found with her.
Now while some will learn, other will refuse to. No matter how I explain it. Even if I say those infamous words “Don’t take my word for it, read this…” , they still are locked into their opinion that this is some sort of great game to Alexis. That she is a puppet master and we are merely puppets.
Of course the part that really gets my proverbial goat is the “Fix it” or “Grow out of it” mentality I run across. Those who believe they can fix Alexis’ autism by doing this or that. Or that she’ll one day just grow out of it. She won’t. This is her, it is how she will be for the rest of her life.
And that is when I call for a drone strike, lashing out verbally against those who think this is all some sort of game.
And, I have to stop that.
Because my wife was right, lashing out isn’t helping me, her, or our daughter. You can educate people, help them understand that Alexis isn’t being a brat, it’s just that she thinks in a way that you can not fathom. I need to just learn that not everyone will get it, not everyone will accept her, and that my job as a father, and our job as parents, are to work with her to help her understand that not everyone will understand.
Our hopes are to give our HFA daughter the tools she needs to lead a good life. To enjoy family and friends. To have the career she wants. To teach her that although like a Fairy Bride in the mortal world, she can learn to adjust to our theoretical “Neural Typical” world, and still be herself.
Because like a Fairy Bride, with all her quirkiness, she is the Most Beautiful of Creatures to us.