Late Thoughts on Autism Awareness Day

Today is the start of Autism Awareness Month. I would like to greet it with some sort of pomp and circumstance, but since it's always Hey, Parent, You're On Day, I am sure I will have my hands full with distance learning and house cleaning and possibly remembering to shower. This is a pretty normal conundrum nowadays; I like to try and offer Autism some attention, but find that all of the rest of the joys and hardships of life weave their way in. Life isn't always all about Autism, but Autism is always in our life.

When PJ was first diagnosed, I went through the stages of grief like Ross and Kubler were my roomates. Denial (We need to get a second opinion!), anger (Why would God do this to my baby? I mean, what the fuck is wrong with Him?), bargaining (If I read to him every night...if we go organic...if we get all the therapies, all the meds, all the sensory toys...), and took a good long stop with depression (Lots of Crying, little friends or family or joy).

Getting to the last step, acceptance, took some work. It had nothing to do with loving PJ- I would love him if he was an axe murderer or even a Pittsburgh Penguins fan. But I thought that I could accept PJ without accepting this unwanted piece of him. I didn't want anything to be wrong with my baby. We would get ahead of Autism with therapy, with school, and with sheer will. But you don't get line-item vetoes with your kids. Loving your kid means that you love all the parts of them.

As it turns out, Autism isn't something we can outrun. Instead, it runs right along next to us. It's not going anywhere. Being aware isn't enough. If I don't want Autism to get underfoot while we run, I need to acknowledge it, make space for it, and accept it.

 I said that our life isn't always about Autism, but that Autism is always in our life. We used to worry about what PJ wouldn't do. Now, we assume he can do anything and if he can't do it completely by himself, we try and figure out what he needs to be successful. This can be in the classroom, at parkour lessons, at camp, at a birthday party. Like any other kid, sometimes he rocks the shit out of things, and sometimes it's a rocky shit show. When it's the latter, we regroup, try and figure out how and if it's possible to make it better, and take another stab. Sometimes we never go back to it (street hockey, The Lego Experience, karate), sometimes we try, try again (haircuts) and sometimes it's a win for the ages (surfing, parkour, Lego club at school). It's risky, of course, and there have been spectacular fails peppered in during his 10.5 years of living. But Autism isn't the boss of things. We are.

That is certainly not to say that Autism doesn't sometimes get...well, bossy. It is a diagnosis that is sometimes unpredictable and ruthless. But even in it's ruthlessness it is still my Boy, just magnified and intensified. I get to experience my son in the brightest of all of his shades and I am thankful for the strange and kind of messy-beautiful gift that is. PJ is an artist, an adventurer, a traveler, and a storyteller. We don't need a particular day or month of the year to want to show that off to the world. PJ isn't in the spotlight, he is the spotlight.

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