To say or not to say

Ive been thinking over this post for the past few days, contemplating; to say or not to say…It seems Im trying to constantly fight myself from one side or another.  Im 100% for two totally opposite subjects, and often most times it complicates things.  Its not as connected as I would like it to be…but for what its worth…

 

I see the work and effort, and struggles he goes through daily, just to get out of bed, get dressed, and get shoved out the door into a world that he puts so much effort into understanding, when they give so little back.

I pulled this out of one of my all time favorite posts that I had written. I think it sums things up, so well. In ways that I cant top. I know others could with little effort, but for me, this seems to sum everything up.

It seems to say just what I want, and every time I read that, I think, and wonder…and stop and give him a little extra boost.

Im being honest here, when I write. When I say what I say. I don’t hold anything back, because when I say I write to remember, I want to remember, the good. The bad. And everything in between. I want to read back, and see the struggles, and be reminded that no, life isn’t always, nor will it ever, be easy. And that. That right there, gets me every time.

Every morning, he gets up, just like everyone else. He does the morning routine, just like everyone else, and he goes to school, just like most kids out there. But everything he does is met with a struggle, a constant battle, a fight, just to do one simple thing. Getting dressed is not as simple as it is for some. He cant just get up and toss on last nights clothes. It takes time, preparation, and sometimes a complete melt down, before he will get dressed. Breakfast isn’t as easy either, and neither is the final steps in getting dressed and going out to get on the bus that usually sends him flailing to the ground.

He cant greet every morning with a smile, nor does he. He cant smile at the day, because its written across his face, that he is confused, hes scared, and he doesn’t understand, and at times…the look is enough to make me want to package him up, and put him on a shelf where life wont bother him.

He understands, but doesn’t believe. He knows, but doesn’t trust. Hes five years old, and that’s been taken away from him. He doesn’t blindly trust others, or believe them. He needs proof. He needs solid evidence. He needs repeated steps, that show him, over and over and over again that it is ok, that it will be ok, and that it will be ok. And if something goes wrong? If something doesn’t go as planned, if something comes up, you can bet that you will go back to square one with him.

That if you have proved yourself, 499 times, and mess up once, those 499 times mean absolutely nothing to him.

 

I see the work and effort, and struggles he goes through daily, just to get out of bed, get dressed, and get shoved out the door into a world that he puts so much effort into understanding, when they give so little back.

And it irritates me, upsets me, drives me to getting upset, and at times makes me wonder what this world has come to.

Everyone is so busy. So wrapped up in their own schedules, so concerned about themselves, and so preoccupied, that when something doesn’t “Fit” the ordinary, they check it off as failed, instead of “Extraordinary” as Madison so nicely put it. They don’t give him a chance, they don’t try to help, they don’t attempt to understand that there is more than one way about this, and that the other way might be the way that others need it. They don’t give any, instead they take all, and scream for more.

I get Josh up every morning, I help him through his morning routine, and try to give him that small start to his morning, that can be good. But why. I ask myself so many times. If hes going to go out that door – and be forced to face his fears – fears that no one understands, or cares to understand. Why does he have to change to fit, why does he have to do all the work.

 

I see the work and effort, and struggles he goes through daily, just to get out of bed, get dressed, and get shoved out the door into a world that he puts so much effort into understanding, when they give so little back.

And Im inspired. By the strength, and courage. By the repeated steps, and numerous attempts. By everything that is wrapped up and presented as a five year old boy. Struggling to get through this world.

Trying so hard to understand and prepare for a world…that puts so little effort into understanding him.

Just this morning I got him up, fought him through the shower, watched him fidget over his breakfast, and hauled him out to the bus, where he melted down at the bottom of the stairs.

I walked away, knowing that by the time he got to school, he would most likely be ok, that he would have pulled himself together and made it through the school, into his class, and the torture of the day…that I would pick him up, and bring him home…

But I couldn’t help but ask why. Why I put him through it, why I push him so hard…(logically, yes I know that its good for him, but that doesn’t matter) push him to do whats hard, what he doesn’t like, what he struggles most with…to “Fit in” with a world that doesn’t even spend a minute trying to understand where he might be coming from.

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One comment

  1. That’s very much what life is like for most autistic people……you write very well about it. I’m sure I felt many of the same things Josh feels now, when I was his age, and guess what, I still feel some of those things. I can definitely relate to “making such an effort to understand the larger world and the world gives so little back.”

    It’s frustrating. I get mad about it very often. Unfortunately that doesn’t do jack to make the situation any better, but I’m only human and can take just so much before I get utterly fed up.

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