"Today was so hard. Why does it always have to be so hard?"
I've taken for granted the bits of joy, and focused only on the bits that aren't so joyous.
I've put K in situations I know are beyond impossible for her, then cursed the gods when things didn't end well.
I've lost patience with B, and pushed him to the point of melting down.
Yet, I'm always surprised. Always left wondering. Always asking why everything has to be so hard? Why must we face so many bad days?
But, I don't want to ask those questions anymore. When I let out a weary sigh, and talk about how bad the day was, I am, in essence, placing the blame squarely on my children's shoulders. I don't take into account my own missteps. My own inability to understand life isn't perfect for anyone, and see the gifts each day has to offer. I'm telling people that because of autism, because of my kids, there are days that are just plain awful. It's not a burden my children should have to bear.
I never want my kids to see frustration or sadness on my face, and think they are the cause. I never want my attitude to convey to the world that autism is some giant, evil, monster, and therefore so are my children. I don't want to give the "hard" times a life of their own, making them the only things people see. Bad days are a given for anyone, so why can't we shift the focus to the good days? Build up ourselves, one another, our kids, with those?
There is being honest, and then there is throwing a pity-party each day. There is doing the same things over and over again, and being shocked the results are always the same. There's never being able to share a story of something fantastic, without qualifying it with something bad happening while getting there.
Because we can never just share joy. We might lose our membership to the club if we did that.
We can rationalize it many ways, but each time you choose to tell the world how bad your day was because of autism, you are tearing your child down. Making them the cause of your pain. Especially if you believe there is no separating autism from your child.
A "bad" day means without your child, it would have been a good day, and that is just so sad to me.
I'm sure many of you think I am oversimplifying things. That life is so much more complex than what I've described, and how dare I accuse anyone of blaming their child when life gets hard! Just remember, what the outside world sees from us is what shapes public opinion. I know there are those who see autism as a fate worse than death, and can see nothing positive about the lives their children lead, but that's not me, and that's certainly not what I want the people around me believing.
Sure, there are days when life doesn't go exactly as planned, I am not denying that. Of course we are allowed to vent. The problem arises when all we do is vent, and feel that we can't share anything good without peppering our stories with little reminders of how it isn't always that way.
My hard days are mine, caused by my own reactions to the world around me. I need to own that, because it's just too easy to blame autism, instead of working on myself. It's been a long journey to this point, but how I see my life is my choice, and I'm tired of being miserable. It's time to start enjoying my children, and sharing that with the world.
|What am I teaching them about autism? What am I teaching the world?|