Before we go any further, it would probably be best to address the curly-haired elephant in the room.
As I mentioned on his profile, Footloose was diagnosed autistic at around two years of age. Occasionally when we mention this to people we’ve just met, his mother and I get looks of pity and offerings of condolence, as if we had just been handed a life sentence with no possibility of parole. To be honest, I used to get a little hot under the collar at this response, mostly due to the fact that I don’t consider my child to be some kind of weight that I’ve been shackled with. He (along with his brother) is the best thing that I will ever contribute to this world, autism or no. He’s a funny, loving, huggable little wildebeest that keeps me going even on those days that I decide that “adulting” is the last damn thing I want to do.
Keeping that in mind, I’ve tried to learn to take those reactions in stride. Putting myself in the opposite position, I can see where someone would feel for a parent that has to face the challenges of raising a child with any kind of disability. Raising a “typical” child is difficult enough, let alone one that can’t tell you what he needs or wants, or can lash out at the drop of a hat for seemingly no reason. It doesn’t help that autism isn’t as well-known or understood as other conditions. You can’t just look at someone and know right off the bat that they’re autistic. Let’s face it, most people’s exposure to the condition involves seeing puzzle-piece ribbon decals on the backs of mini-vans or that time they watched “Rain Man”.
I’m more concerned that people understand what it means for my boy than how it effects me. Perhaps if they could experience the world through his eyes, they’d understand a little better. I’ll state emphatically that I’m no expert, but ever since his diagnosis I have taken the opportunity to read as much as I can, particularly first-hand accounts from those who grew up autistic. Between that and my own observations with Footloose, I think I have at least a slim idea of what he goes through. So if you’ll bear with me, let me take a shot at this:
What’s living autistic like?
Imagine you’re on vacation abroad visiting a friend in their homeland. Obviously, your friend knows the local customs and speaks the language, but you don’t. She’s invited to a party that night, and wants you to come along, thinking you’ll get a kick out of the local culture and the band that will be playing.
You get to the party, and right off the bat you run into a couple of problems. First, the new outfit you bought is itchy and uncomfortable (you wore it straight off the rack – wool was a bad choice). It feels like you’ve got a thousand little pins scratching you all over the trunk of your body. You’re surrounded by people speaking a foreign tongue you don’t understand. Your friend has tried to give you a few lessons on the native language, but you just haven’t been able to pick it up. This pretty much puts the kibosh on any attempts to socialize. Let’s not even get started on the local “cuisine”. The smell and texture alone make you want to toss your cookies (how can people eat this stuff?).
It doesn’t help that the band is playing at a volume that makes your ears ring, or that they’re using spotlights that keep blinding you (how is this not bothering anyone else?). You’re trying to stick it out, but it seems like the music is getting louder and louder. There’s not much room to move around and every time you turn you’re either jostling or getting jostled by someone. You try to apologize, but all you get are stares in response. There’s no room to move, no room to breathe. It’s getting to the point where you can’t think straight, there’s just too much going on . You start to get anxious because all you really want to do is get out of there and get some air and a little peace.
You’ve had enough, you can’t handle it anymore, and you start to panic. You lash out, trying to force your way through the crowd, with people staring at you and yelling in that language you can’t speak. They start looking at your friend, asking her what your problem is. These people don’t know you can’t speak the language, or that you’re just trying to get away from an ever worsening situation. To them, you’re just an ill-tempered, ill-mannered party guest that needs to go.
Your friend makes her apologies so she can get you out of there for your sake, not theirs. She was worried this might happen, knowing the situation, but didn’t want to leave you behind. You feel badly for what happened. It’s not that you didn’t want to get to know the other party-goers and have a good time, it was just too hard with all those people, all that sound and light overloading your senses.
Now imagine that the foreign land is actually home, the language you can’t understand is English, and that one-night event is your day-to-day life.
This is what it’s like for my boy.
Autism can make you feel like a stranger in your own land. The severity and effects of the condition differ from person to person. Some are so high functioning that you’d never know they were autistic at first glance. Regardless, it’s still a challenge they struggle with everyday. Men and women. Boys and girls. It’s something they’re born with.
The good news is that it is being recognized earlier these days, and early intervention can do wonders. There’s no cure, and no need for one. I’ve learned that autism is not a disease. It’s a difference in neurology. That doesn’t mean that autistic individuals are “cursed” to lead a life less meaningful. They have just as much potential for happiness and fulfillment as anyone. They just need a bit more help, patience, and understanding to realize it.
I have no idea what will happen with my boy in the future. He may respond to therapy and develop to the point where he can live a perfectly self-sufficient life. He may never be able to live on his own. If that turns out to be the case, he’ll have to stay with his mother and I so we can care for him as long as we are able. I have no problem with that. My only concern is this; that he live up to his potential, whatever that may be. It’s not for me to decide what that potential is. It’s just my job to support him and give him the opportunity to grow into his best self. As long as he’s healthy and happy, that’s all that matters.
At the end of the day, that’s all any parent wants for his or her child. So you see, I don’t really make a distinction between being a “regular” parent and a special needs parent. It’s all just parenting. We bring our children into the world, give them what they need to grow, and hope for the best. When all is said and done, that’s all any of us can do.
I’m grateful to my boy for teaching me that and for helping me focus on his needs rather than my dreams. I’m grateful to him for teaching me that what really matters is showing him and his brother that the world is full of possibility, and that as long as they’re living their lives in ways that don’t hurt themselves or someone else, their old man will be proud of them no matter what.
Except when they’re using him as a trampoline. Every rule has an exception.
You can follow Footloose’s ongoing adventures on Instagram at fatherhood_in_the_trenches or on twitter @jmwilson3055