September 8, 2015

An Open Book

My hands are looking pretty beat up these days, covered in scratches and scabs. My wrists too. Moe is having a rough time.

When things are really bad, he bangs his head on the floor, the table, or any hard surface he can find. And Jeff and I (or our incredible nanny who pretty much deserves hazard pay by now) spend a lot of time trying to keep him safe. And we get a little scratched up in the process.

I suspect he started off not feeling well, maybe with a sore throat. Then he started banging his head, leading to headaches, leading to more frustration and head banging. Moe doesn't like it when we don't let him hurt himself, so he scratches.

And now my hands look like this. It's minor in the scheme of things. Whatever Moe is feeling to make him want to hurt himself and lash out at us, is worse. I know that.

But it poses a bit of a dilemma for me. I work full time, and I don't hide the fact that my son is autistic. For one thing, I probably wouldn't have my current job if I hadn't started blogging about Moe. I had taken six years off before going back to work so when I started interviewing many of my writing samples were from this blog. So anyone who interviewed me knew at least some of this story.

Most of my co-workers know as well. It's easier to have it be out there. I was nervous about that at first. It's hard enough being a working mom, let alone one with a special needs child. But it makes some things easier to explain, and you never know when you'll find a connection with someone with a similar story.

Besides, as a blogger (read: oversharer), it would be more uncomfortable for me to hide this side of my life. So for the most part, I'm open about Moe. I work with kind and intelligent people who don't try to sell me on the latest fad cures, so I like it when they ask questions. They actually listen. So, when a co-worker notices the bandaids on my wrist and jokingly asks "tough weekend?" I don't make up an excuse about a cat or scratches from the garden. Yes, it was a tough weekend.

But bringing the really hard stuff to such a visible place, not just on this blog but literally on my hands, can be difficult. Work is my escape from life with autism. I don't want those emotions at work and these scratches are a reminder of the hardest part of my life, watching Moe struggle. Worrying about his future. Getting beat up by my own kid. And I don't want that part, the worst part, to be how Moe is represented to the world.

So let me show you the sweet side of Moe too. The one where he snuggles up to me and we hold hands, if only for a minute. And his eyes, such a bright blue when he smiles. A smile that is all too rare these days but that we don't stop fighting for every single day.

5 comments:

  1. Thank you so so so much for sharing your truth. Thank you for sharing that Autism is more than the high functioning aspergers that "must see TV" and "very special" episodes portray.

    Sending hugs to you, Jeff, Moe, and Jelly. I love you, my friend.

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  2. I think Moe is having a tough weekend. Does Moe have sufficient downtime so that he can do whatever he likes, even if it looks like "nothing" or a non-violent outlet for his anger like punching a punching bag/pillow or ripping paper? Do you give him options when it comes to leisure, clothing, or food? Are there any alternatives such as using a brush on the skin, chewing gum, or squeezing a stress ball that would potentially work for Moe? Consider his overall temperament. Is he more choleric, melancholic, sanguine, phlegmatic, or supine/leukine? Act according to this temperament. I am an autistic person concerned for the wellbeing of my people. It is important to me that my people thrive and, as far as I am concerned, Moe is my people. You can scream at my digital face, call me "too high-functioning" or "too intelligent", and say that I'm not like Moe, but that has ceased to bother me long ago. People like Moe are my raison d'ĂȘtre for advocacy.

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    Replies
    1. Thanks you so much for commenting and for looking out for kids (and all people) like Moe. We try to give him what he needs but it is hard to always know what that is. We try to let him lead the way as much as we can while keeping him and his sister safe.

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    2. Does he get more aggressive before a cold or allergies strikes? For me, allergies tend to be systemic. If I feel particularly drained, it's usually due to allergies or a cold. I do academically worse in 3rd block (out of 4 and right before lunch) because I'm usually hungry and tired at this time. Does Moe know how to listen to his body and act accordingly? That can help reduce aggression. How do you "let him lead"?

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  3. Your post made me tear up. Just the love of a mama. Keep loving that beautiful boy :)

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I love comments! Respectful disagreement always encouraged.

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