A different kind of grief?

Ive held off saying this for a while, but only because Im not sure how to say it.  And because I swing back and forth so often, that today I will think this way and tomorrow I will wonder who wrote it.  The thing is, I don’t want to offend.  I know everyone has different opinions, beliefs, thoughts, etc.  But the one thing that seems to be among the most popular is that with autism, there is a lot of grieving.  I heard someone say the other day that they often look at their child with sadness, and grief over what they COULD have been.

For whatever reason, it hit me wrong.  I don’t grieve for what Josh could have been, he never would be that “person” that I would be grieving for.  He is who he is, and who he always was supposed to be.  If I have any grief over who he could have been, it is only because I have had these unrealistic dreams for him.  Dreams that never were meant to be dreamt up for him.

This isn’t to say I don’t get sad sometimes, or upset.  Or frustrated.  With what he faces.  This isn’t to say I don’t wonder how his life would be if he didn’t struggle with the things he does, but I also have to remember – that if he didn’t.  If he didn’t have autism, if he didn’t struggle with certain things.  He wouldn’t be Josh.  He wouldn’t be the kid we all love.  He would be someone else, and sure, we would still love him if that’s who he would have been, but autism doesn’t change my view of who he is.  I don’t grieve over what could have been, because I still have him.  Hes still here.  I can still wrap my arms around him, I can still run my fingers through his hair, and watch him sleep.  Hes still here.  There is NOTHING to grieve over.

Except maybe the loss that other people see, when they see him.

They have a perceived view of who he is.  Even though they don’t know him.  They hear the word “Autism” and place their ideas of who he is on him.  They limit him.  They hold him back.  They don’t let him expand because they don’t think he can.  They see him as autism, they don’t see him as Josh.  And that, is what I grieve over, if anything.

At first glance you couldn’t tell anything is “Out of the ordinary.”  I don’t dress him up with flashing signs and labels to tip the world off of this.  He walks through the world as a “Normal” seven year old boy until someone catches wind of the six letter word and then they act as if he has an unspeakable plague.  The questions.  The ideas.  Everyone has their own idea of what autism looks like, and everyone is wrong.  Autism looks like a normal child.  Autism IS a normal child.  Autism is the name of something that causes an ordinary child, or person, to struggle with certain things that others might not.  But just as I wouldn’t poke fun at you if you had a visible disability, I would think you wouldn’t poke fun at him.

Just because someone doesn’t think the same way as you, or act the same way.  Just because someone ISNT you doesn’t mean its wrong.

Josh IS A NORMAL child, but the minute you tell someone that they come right back with “Oh but I thought…”  Oh but you thought.  Let me tell you something, YOU thought wrong.  This kid has over come so much in his life, that I think he deserves just a little bit of slack.  SO WHAT is what I say.  SO WHAT if he doesn’t talk with his mouth, or use his words to tell you what he wants.  Why arent you finding other ways to hear what he is saying?  Why must he be like everyone else to be considered normal?

Why don’t his thoughts and feelings matter?  Just because he cant express them the same way you or I might, doesn’t mean he doesn’t have them.  And just because he doesn’t talk, doesn’t mean you cant understand him.  He is a smart, funny, loving kid.  Who has a stubborn streak that runs deep.

He has a sense of humor that comes out at the craziest times, and has a laugh that you cant help but laugh along with.  He loves wheels, his bear, and has always had a weird fascination with cold peas.  His favorite color is orange.  And he doesn’t like being wet.  In more than one way he is just like you and me.  He laughs, he smiles, he runs.  He plays.

But what isn’t just like you or me, is that he struggles.  With everything he does.  A simple trip to the store takes careful calculation.  Dinner takes twice as long.  And school takes him to his limit.  It takes him hours to fall asleep at night, and he is always up bright and early.  Everyday.  Without fail.  He doesn’t have a single friend that I know of, and struggles in social situations.

But I don’t grieve.  For him.  Or who he could have, should have been.  He is who he should be.  The only thing that makes me sad, is that people, myself included, cant see past the differences that makes him his unique self and see him for who he really is.

Today.

Right now.

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One comment

  1. My son is also seven years old. He has a high-functioning form of Autism, called Asperger’s Syndrome. He is wonderful, funny, quirky, has a smile that melts my heart, and I wouldn’t change a thing about him. Some might think that if I could, I would take his Autism from him, but that is not the case. His Autism is part of what makes him so wonderfully unique. To think of changing him would mean that I don’t accept him just as he is. I love him deeply, every single thing about him.
    I recently started blogging, mostly about him. I would love it if you would stop by and take a look at my blog. We could all use more support in this journey.

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