Friday, February 28, 2014

The thing

This past week, a student in Philly was the subject of national news when an adult contracted by her school yanked a sweater vest out of her mouth, pulling 3 baby teeth along with it.  The little girl has special needs, although the story does not indicate exactly what her disorder is.

But it doesn't matter to me.

I made the mistake of reading the comments below the article.  I don't know why I did that.  Only assholes post comments under those news articles.  It was a shitstorm of posts on how this child doesn't have special needs, she's just a "brat" who is "defiant" and "can't follow directions." I could copy and paste some of those moronic comments here, but I can't even bring myself to go back and reread them.

Incredibly ironically, I read about this story last Wednesday night, and earlier that very same day the Meatball's Occupational Therapist was here to work with us.  She just happened to tell us about a certain sensory issue in which people chew on their clothing.  She was explaining how the Meatball needs extra sensory input sometimes and he clenches his fists and jaw in response to this need.  Many kids need to chew gum or their sleeves to release the tension.  Again, it was totally ironic that we had that conversation and then later that night this particular story was on the news.

So we happen to have a kid who has a "thing".  Meaning, we can't put a name on it, but the Meatball has a way of learning that isn't conducive to present day societal norms.  He doesn't have a physical abnormality or anything outward in his appearance that indicates his struggles.  So assholes out there in the real world are going to assume things about him based on his behavior.

And you know what?  I'm one of those assholes.  I've worked with people who I thought were "weird".  I recounted stories about encounters with strange people at the supermarket.  I have bitched about my day being inconvenienced by someone who is an odd social bird.

In the years before I had children, I ran a summer camp at an art center.  One day, a dad walked in with a registration form in one hand and an Epi-pen in the other.  His daughter has a severe peanut allergy, he told me.  Someone on staff would need to administer the Epi-pen should she have an allergic reaction.  This small non-profit community art center could not afford to have a nurse on staff, so that staff member would have to be me.  I hesitated a little too long in my response to this dad.  I had never had any medical training and I had never been approached with something of this nature as Camp Director.  

"By law you can't turn her away!"  He practically shouted at me, "She has a right to go to camp here and you have a responsibility to make it a safe environment for her!"  

I threw my hands up- Whoa Whoa Whoa!  Of course we would make it safe for her, I assured him.  I reluctantly got a brief lesson on how to use the Epi-pen, which, to my horror, was basically "thrust into her chest".  Anyone who is close to me knows that I am pretty squeamish when it comes to anything like this.  I cringe when the hubs just cracks his knuckles in my presence.  Later at home, I complained to Dave.  Why wouldn't he just send her to a camp that has a nurse on staff?  Of all the camps, why did he have to choose our tiny, broke, camp that couldn't even afford proper air conditioning in most classrooms?

What an asshole I was.  What an arrogant jerk.  Because now here I am, the mom of a kid with a "thing" that people aren't going to understand.  He might be in school someday and need something intangible that people don't think is necessary or don't want to be bothered with.  He's going to grow up into an adult out there in the world and maybe have some "quirks" that make people think he's odd.  He might not fit into the social constructs in life.  He's not "average".  He's not "the norm".  

I read the comments posted below that news story and I want to comment back to each and every one of them and educate them personally.  "She has sensory issues, you asshole.  She's not chewing on her clothes because she's a brat.  She's doing it because she needs to do it.  Because her body needs to place itself in space.  The sensory issue she has is unnerving and uncomfortable.  Her jaw needs an outlet."

Being the parent of a kid with a "thing" makes you hyper aware of everyone you interact with.  There's that dude in line ahead of me at the small Italian market who is temperamental because the prosciutto is sliced too thick, and he's becoming upset and getting loud about it.  Yea, maybe he's having a bad day, and maybe he's just a dick.  But maybe, maybe, he has something else going on... something a little more complex than that. 

I know whatever this is that's going on with the Meatball is something that could require me to advocate for him possibly more than once in his life.  I might find myself in the sweltering un-air conditioned office of some ignorant summer camp director, my sweaty and nervous palms clenching a registration form as I demand in a high pitched voice "He has rights!"

I know someone who has been going through something with her child that she needs to advocate for, and she once said to me "I know she's different, and I know I can't make everyone see that she needs these things.  I just need to teach her to be her own advocate and to grow thick skin.  But it makes me mad that my kid has to have thicker skin than a lot of other kids because most people don't get it."

But that's the reality.  Those who get it, get it.  Those who don't, might be able to be educated, and they'll get it with time.  And those who don't and can't be bothered with being educated on the matter.... well, I guess they'll just keep being assholes, won't they?

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  1. As the mother of an adult son who has a "thing" that is not physically obvious, this blog touched me. Thank you. I have been his advocate since he was little, and did my best to teach him to be his own advocate too. It's been a journey for sure. Along the way, I'd like to think that it has given me more compassion for "quirky" people. Your post reminds me to keep working on that. I know I am still too quick to jump to criticize people like that guy in the deli line who needs his meat sliced "just so". Thank you for a good reminder!

  2. Always a fun, honest read, Jeanne. I agree that hopefully people will learn over the long term, but I think that teacher should have known. I've had verbal reactions to student behavior that I have regretted and for which I later apologized. That's why, for my philosophy, reactions can never involve your hands. I supposed elementary school is different though. I hope for the future though too. Another enjoyable post.