He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.

Tuesday, August 2, 2011

It's Not Fair

Parents hear "It's not fair" all the time. Most of the time it is merely an aggravation, and responses tend to be something like life isn't always fair, or it all evens out in the long run, or the ever-popular: "you get what you get, and you don't get upset".

James has always been hyper-focused on making sure that everything is divided perfectly evenly, and is constantly worried that he is getting the short end of every stick. We try to make things as even as we can, but it isn't always possible. And unfortunately, he is not able to understand that it all evens out in the end, and he can't reconcile the (many) times he actually gets more with the specific moments he feels slighted .

So I'm used to hearing "It's not fair", and I've been able to deflect it somewhat. Until this summer.

This summer, it has become clear that James is not talking about who got more minutes playing Wii or who got more brown M&Ms.

He means "It's not fair that I have autism".

He has realized that he is different. He recognizes that most things come easily to Johnny, and he gets very frustrated when he can't do those things as well as his little brother. He notices that Johnny runs around the pool, going down water slides, going in the deep lap pool and on the obstacle course, while he stays in the shallow part of the zero entry pool, staring through his clear inner tube at everything going on around him. His friends get bored in the wave pool and go off and play with Johnny. James stays where he is or sits on the steps, watching. He is lucky to have a friend who stays with him and plays the games he loves, but he still notices the ones that gravitate toward his brother, and he wonders why. Now he only agrees to go if that friend will be there.

I don't know how to respond to him, and I don't know how to make this easier for him. This is uncharted territory for me, and I'm completely unprepared.

I've tried explaining autism to both of them ("Mommy, Do I have Autism Too") by highlighting the unique things that James is able to do. I haven't completely dismissed the challenges that James faces, but I've been focused on making sure that he doesn't feel like he is less than his brother or friends in any way, and I haven't adequately dealt with how to react when those situations arise.

I've been avoiding it, in that same way I avoid laundry or cleaning the kitchen. I realize that the longer I wait, the more it will pile up, but I can't seem to take it on. It's just TOO BIG.

His social worker is wonderful, and I know she is going to be a huge help in this new "chapter". I don't even know what to call it - I can't say it is a challenge or an obstacle, because it is his entire life and it is not something that we are going to fix or he is going to overcome.

He is going to face this for his entire life.

He is going to face this for his entire life.

There. I said it.

I think that was the first time since the bleary-eyed early days of the diagnosis that I actually said it.

Now that I've said it, I think I can start working to support him, however I can, and with whatever resources I can find. But unlike those first days of the diagnosis, I know better than to try and take it all on by myself.

I'm going to need your help.


Anonymous said...

I can't take it on either.
The laundry analogy is perfect.
My son is sandwiched between his two brothers and I know that very soon he'll see it on both sides. And it sucks.
All I can offer is this line from a Dove chocolate bar wrapper that my son's teacher gave to me. "Being different isn't just good. It's fantastic."
I'm going to cling to that phrase, as it will help me explain life to all three of my sons.
I hope.

krismac said...

That is perfect- I'm going to cling to that as well! In fact, since James loves chocolate even more than traffic lights, maybe I'll use Dove bars as incentives and we can read all the positive messages together. Thanks for being here Alysia- as a follower of your amazing blog, it means a lot that you would read and share this. Thank you!