What if

I waffle, a lot. Awareness or not. Yes or no. Up and down. Im back and forth quite often, and more so, I have landed in the camp of not wanting to bring any MORE awareness to an already sensitive subject. Why, I ask myself, would I want to bring more awareness to a child who already sticks out like a sore thumb on a rainy day. Why! What about “Non awareness” and learning to let him live his life not being such a spectacle? Sometimes I wonder what it would be like, to go unnoticed.

Lately however, I have been giving more and more thought to the question.

As Josh gets older, his differences are more and more obvious. The fact that he doesn’t talk like every other eight year old boy out there. The fact that he doesn’t interact with others. The fact that he seems to be in his own world. The fact that he is Josh, and no one else – its obvious. More so than ever. And more so than ever, I find myself back pedaling, and second guessing all the way. And asking more and more – why.

This weekend we went for what was going to be a relaxing walk, I stopped and got a coffee before heading out to enjoy some of the recent sun and let the kids and dogs run. But fate had something else in mind, because instead of enjoying my coffee, we were interrupted by a tourist who wanted a tour of the island. And a tour of our life. She asked questions. She took pictures. She wondered about everything. She tried to befriend Josh, and in the process sent him off the invisible edge. Because he is not all up to date on social circumstances, and didn’t want to hold her hand and really wanted nothing to do with her.

It took him longer than usual to fall asleep and the following day ended with me pulling my hair out as he let loose while I attempted another relaxing evening. Why I try to relax any more is beyond me.

But sometimes I wonder what it would be like.

What would it be like to sit down and watch a movie on the tv instead of the computer, because movies on the tv are too much for him. What would it be like to carry on a conversation with an actual adult without being interrupted a million and one times. What would it be like to not have to watch him like a hawk because you never know when it will enter his mind that he needs to go – and go now. What would it be like to not have to contain him as he FLIPS out over something so small you might not even know what it is. What would it be like to have a simple, normal, relaxing, somewhat boring life?

The mornings start at 5am, sometimes  4. He rolls out of bed and makes his way to mine. He sits down on the couch and turns the tv on. Im awaken by the noise, but rarely startled anymore because 4am tv shows are just normal here. He pulls his hair, pinches his skin, rubs his arms, cracks his fingers. He doesn’t want to be touched, but cant stand to be alone. Any intervention to his “Morning routine” will result in chaos that one does not want to deal with, especially at 4am. And so I close my eyes, and listen.

And silently hope that I will be able to get through today.

Because these days arent getting any easier. A few hours later, and he is ready to join the world. He deals with the lack of routine, and forgives the seemingly craziness of the day by making his own rules. He wont eat unless everything is just right. He wont leave the house until his toys are put in their place. He wont move from one thing to another until he is finished. Simple things, that make his day alright. He tolerates the crowds and noises by pinching his arms and closing his eyes. Grocery store trips are no longer torturous for me, but perhaps for him they are.

One wrong touch from a stranger can tip his already fragile mind. People don’t seem to understand that he is ignoring everything around him – because its easier, and he cannot function if he doesn’t. Self help, I suppose.

But at the end of the day – he lets loose. Sometimes on his own terms, under his bed, with only his bear to help. Sometimes his frustrations will come all out, and the terrifying next few minutes don’t seem to faze anyone anymore – let him go. And a few hours later, he is fast asleep, oblivious to the world at midnight. Tight fists finally relaxed, and crumpled fingers lay loose by his side.

Another day. Another way.

What would is be like, I wonder. If his life were just a little bit easier. If people understood that he isn’t being rude, he is making do with what has been given to him. What would it be like, if instead of trying to push him out of HIS comfort zone, we met him there – and helped him realize that the world isn’t all that bad by letting him experience it at his own pace. What would it be like I wonder, if he didn’t have to start his mornings at 4 am. What would it be like…if I could just understand him, without words, and help him, in a way that would be beneficial to him.

Its already obvious, in so many ways, that he struggles. That he has autism. That things are not the same in his mind as they are in mine or yours. But what isn’t obvious, it seems, is that he is a person with thoughts and feelings and expressions and needs. What isn’t obvious at times – is that no, he doesn’t WANT to hold your hand, or help you out – or maybe he does, but he CANT.  What isn’t obvious is that he has been on the go for hours before you and his day is 20 times harder than yours, so cut him some slack, give him a break.

Yes hes 8, yes he still holds my hand, no he probably wont hold yours. No he doesn’t talk. No he probably wont smile. But he is happy, and he has things he likes. He has feelings, and he can hear.

What would it be like, I wonder, if I could just remember this.

Hes trying, so why cant I?


One comment

  1. I really admire you for what you have written. It is hard caring for a child with Autism and sometimes it can get too much, but knowing that you are one of the few people that can help that child get through the day is the most rewarding thing in the world.

    People with no experience of Autism think that losing patience or getting fed up with a disabled child is a terrible thing, but I think it shows love. You are not frustrated for yourself, you are frustrated for them. If you didn’t love them you wouldn’t go back.

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