"Change, when it comes, cracks everything open."
Dorothy Allen

Monday, June 25, 2012


I carry a lot of anxiety with me.  I always have.  I am trying to work on this, so that I won't always.  I try to be self aware enough to know when my anxiety is getting out of control and when it begins to impact my life in negative ways. It sometimes gets away from me, but for the most part, I think I am doing better. 

Except when it comes to my kids, and Sebastian in particular.  

Over the past couple of weeks, I have really become aware of this anxiety, because of a couple of different situations that we have been in.  We have been socializing a bit with him and some of our friends and their neurotypical children.  And we have had him around other auties.  

And while we were in these situations, I could feel my stress rising.  That feeling in the pit of my stomach would start building.  My head would pound and my whole demeanour changed.  By the time we left for home, Geoff would be asking what was wrong, what had happened to make me so mad?  And the answer was, quite honestly, nothing.  Nothing had happened.  Except that I was there, trying to control Sebastian and help him fit in.

Now believe me when I say, that in no way did any of our friends induce this in me.  I do it to myself.  Pretty much everyone in our lives is very understanding about Sebastian and his quirks and behaviours and issues and struggles. Sometimes it seems more like tolerance, rather than understanding, but I will often take what I can get.  And if you don't understand the difference, then count yourself lucky...you don't live in my shoes. 

So, if the anxiety that I feel isn't because of other people, then it must be coming from me.  And I know that. I feel tremendous pressure to try and fit Sebastian, the epitome of the square peg, into the round holes all around us.  I know that if he can't get along, and fit in, at least a little bit, he will have a really, really rough road ahead of him.  I know he's different.  I know he seems weird.  But if I can help minimize that, I will do everything I can.

When we are out, I stress manners.  I make him say please and thank you.  I make him say excuse me and clear his plate.  I make him sit at the table, as best I can.  I make him keep his hands out his mouth, his pants up around his hips, and ask him constantly stop humming.  I try and make him respect the rules of the home or building that we are in.  I keep him away from TVs, and computers that he shouldn't be touching.  And even if he can touch, I still keep him away, because he never knows when enough is enough.  He will do things that aren't appropriate (looping the TV constantly, pulling apart DVDs and playing with the discs, watching movie after movie on YouTube).  

And I try to do all this, without you knowing.  I know I don't always succeed.  But I do try.  

I don't want to make you uncomfortable.  You have invited us into your home.  And I don't want you to know how hard it is for me and Sebastian to be there.  I want to be invited back someday.  There have been times when we haven't been invited back.  There was a couple that we were very close to.  The last time we were at their house, Sebastian was 7.  He's going to be 11 this year.  We haven't been invited back.  He wasn't even that bad when we were there.  He was just different.  I was still learning (and still am) how to deal with him.  Maybe I explained too much.  Maybe I didn't explain enough.  All I know, we aren't friends anymore.  

I know that I am vocal about Sebastian and his autism.  I do that for a reason.  I don't want you to be surprised.   I want to give you a heads up.  I don't want it to shock you when he does something strange.  

But then, I am anxious the whole time we are together, because I know you are judging.  Even if you don't mean to, I know that you are.  I probably would be, if I were you.  

Lately, the anxiety is coming faster and harder.  I have started declining invites, just every once in a while, because it is easier to stay home.  It's easier on me and on Sebastian and probably on you. As he gets older, and more defiant, and more set in his ways, I can see the writing on the wall.  And yes, I worry about it. 

I know the advice that most people would give would be to not worry about it.  Why worry about what other people think?  Just do your thing.  We understand, you don't have to worry about this kind of stuff with us.  

I appreciate it.  I really, really do.  But I truly believe you would change your mind if I let him run loose in your house.  And I don't think it would do him any good, to not have rules and expectations.  And as long as I have those rules and expectations, and as long as he pushes back against them, I will continue to worry and be anxious.  So you see...it really is unavoidable.  It's the circle of my life. 

So, why am I writing about this?  I'm not sure.  I think it has a bit to do with the fact that I sometimes want to scream it from the rooftops. When I lose my temper with him, and yell or bark or talk in that fast, harsh whisper with a tight lock on his arm, I see the looks you give me.  It doesn't fit with the image that everyone wants to have- him, the complacent, slightly left of centre oddity, and me, the long-suffering but ever patient mother.  I want that image.  The reality is messy and not always nice.  And it makes me want to yell out to everyone that sometimes, my life sucks.  Sometimes it's hard.  Sometimes, I don't feel like getting out of bed, getting dressed.  Sometimes I don't feel like pretending that everything is ok.  

Maybe it has to do with the fact that Sebastian is changing.  He is becoming harder to control.  He is acting out more.  Like I said, I see the writing on the wall.  I know that sometime, he is going to say or do something at your house that is wrong, or bad, or weird.  And I want you to know that I really, really tried to stop it.  Even it happens 2 years from now- today, tomorrow and every day, I am trying my hardest to prevent it. 

Maybe it just has to do with the fact that I feel the anxiety strongly.  And I want to talk about it.  I don't want you to think I am a crankypants.  I want you to understand why sometimes, I end the night early, I get headaches, and I don't want to do the things that everyone else wants to do. 

And maybe, it's a reminder to myself.  I worry about my worries.  And sometimes I need the reminder that, as hard as it can be, most days are good.  Anita, your kid is a good kid.  He is awesome, really.  And you are doing a good job.  Your worry, your vigilance, your hyper awareness, they are worth it.  You have both come so far.  You are raising an amazing kid, and you are doing good things for him.  The worry just keeps you sharp.  It's a small price to pay.  So pay it.  Keep paying it.  It is so worth it.  

Sorry, this was a weird one.  They happen from time to time.

Ok, it's 1am.  Kiddo's up.  Time to deal with reality.  Again.

Rosie N. Grey
The N stands for "nothing new, just real life."

1 comment:

  1. Thanks for this! I completely feel your pain and "anxiety", and have grabbed an arm or two, and have whispered in the same angry voice!

    At least you are invited to friends houses still, since we have lived in Oshawa we haven't been invited once, I think people are worried what our daughter will do in their house!

    I really appreciate your candor, and your experiences with Sebastian, and I hope we will have a chance to get together in person in the near future!