I would never ask...

I would never ask you if your child might outgrow their disability.  I would never say, "Well doesn't being in a wheelchair mean someday you might not need to be one anymore."

And yet I hear, "Well doesn't being on the spectrum imply that he could be off of it."

I would never imply that maybe if you had taken a different set of herbs or taken care of yourself when you were pregnant or had a different kind of birth that maybe your child would be just fine.

And yet I hear, "Well don't you think that's pretty normal and you could just parent {this way or that way}"

I would never question your child's medical diagnosis.

And yet I find myself constantly faced with defending Caleb's.

Believe me, I spent the first five years of Caleb's life laughing off and justifying away his idio-syncracies.

Isn't it cute how he takes all the toys off the shelf and puts them back exactly the way they were when he took his toy out?  My one year old is going to be a genius!

Oh isn't the cute how much he loves those blue pajamas that he will cry in front of the dryer for an hour because they aren't clean?!

And then there have been the countless appointments begging someone to explain to me why he hurts himself on purpose just to see what will happen.   How he will try to give himself paper cuts to keep himself busy in Mass or run his hand backwards over a piece of wood to see how many splinters he can get.

There is the poop...and the pee...that I have quickly cleaned off the floor of Barnes and Noble and other stores or found hidden in places around our house.   Put there not by my 1, 3, or 5 year old but deposited by an almost 8 year old.

Or my broken heart for a child he calls his "best friend".  Who he hadn't seen in 3 years and only met a handful of times before then, that has his own friends as well he should, but yet Caleb still insists that this is a friend.

How I can tell how difficult an assignment was for him by how much is left of his pencil and his paper when he is finished.

I don't mean to be all down hearted about all of this, I really don't.  Caleb is fiercely intelligent and highly loyal.  He is often calm and joyful.

Except when he's not.

Except when he screams at me and yells and slams doors and throws things at me or cries for hours for no discernible reason or for something so silly to us.

Yeah, I know your kid does that too sometimes, but I assure you it is not the same.  I know some of my readers know the difference.  It's one of those things you either KNOW know, or can't know.  There really isn't middle ground on this one.

I often hear how people "just don't see that".  How he seems like such a "pleasant boy".   Maybe he's a little shy, but that's ok.

And then the, silent head shake/nod when I am brave (or foolish enough) to try to share our struggles.  The, "Well can't you just tell him no."   Or "Maybe if you stopped rewarding him so much."

You know what they truth is?  The truth is the reason that he can do well in those short social settings you observe him in is BECAUSE of both his diagnosis/therapy and our parenting skills, not in spite of it.

If he said hello to you today and looked you in the eye, thank his speech therapist Rachel.  You can thank her for his funny jokes, too.  Actually, you can probably thank her if you understood a word he said, because 3 years ago very few people outside of our family could understand him....if he talked, which wasn't often.

If he didn't smear poop in your bathroom, thank his OT Maddie and his chiropractor Dr. O.

If he played with your kid on the playground or enjoyed a board game, thank Lori and the amazing staff at the Children's Center in Utah.

While you are at it, you should probably thank every one of the staff at Salt Lake City Martial Arts because they taught Caleb how to participate in a structured group and built his confidence like no one else could have.

And never assume that just because he made it through that one day, that one event, that one hour.... that he's really just a normal kid with incompetent parents.

I don't assume that about you.


Martianne said...

So beautiful and honest. I KNOW know, even if our challenges here are different than yours there. I have shared this on my personal FB and on my Training Happy Hearts FB since I think everyone who knows a child like ours should read this.

Sarah McClelland said...

Beautiful. We face many similar and different challenges here as well. The spectrum is wide! I can't stand when someone says well he looks like he doesn't have anything going on! Ha!