April 2nd is World Autism Day. There are blogs out there that are sappy and happy telling you how wonderful their ASD kid is and there is probably some twangy country song playing in the background of the video. That is not this entry. Don't worry, I think my kid is pretty damn wonderful and I love her more than life itself and if you've read any of this blog, you already know that. But today I don't feel like blogging about language leaps or sleeping all night long. I don't want to blog about new things we're trying or finally forcing myself to get the OT paperwork done so we can schedule an appointment. I don't want to blog about what kindergarten will look like and how well Ru is doing with her peers.
Today I want to blog about how autism is exhausting and overwhelming and loud. Some days start at 4 am and don't stop till well after bedtime, and then even after your ASD kid is sleeping you still mull over and over in your head what you could have done differently or better. You regret the moments you lost it and forget the moments you didn't. You know you should go to bed at 9 pm because wake up has been before 5 for a week, and for all you know tonight could be the night she's up from 2-5 again but dammit you really enjoy the evening to watch adult tv or just be alone and quiet. Somedays you see your friends interacting with their NeuroTypical (NT) kids and you just ache with jealousy that you may never know what that feels like. Somedays you go out and you wish you had a sign that said "my kid has autism, stop staring" because you know they think you're a horrid parent and that your kid is just out of control, when in reality they are having a great day. Somedays the constant stimming is so exhausting that you just can't stand another second of it, but in reality you take a deep breath and try to re-engage your child.
I don't want to save my child. I don't want to change who she is. I want to support her so that she is comfortable in her own skin, knows how to self soothe and the best ways she learns and functions. I don't want to make her look like an NT child, I just want her to know how to navigate the world. I want the world to see her for who she is, not who she isn't and to recognize that what she has isn't just something that makes her shiny or sparkly, it's a disability that makes somedays seem almost impossible to survive. I want to give her the tools to thrive as she is but also remove any obstacles that are keeping her from succeeding. This is an exhausting adventure in and of itself, not to mention the sleeplessness, the tantrums and the overwhelming cost of therapies.
Autism sucks, it weighs you down, and kicks your ass, don't ever try to imagine that it doesn't. Sometimes we just need to complain and not pretend that we're heroic or inspirational. And then, in the midst of your complaining, your awe-tistic child bursts on the scene, singing as loudly (and out of tune) as she possibly can, and once again you're defying gravity.