No, I dont down play it

Im unsure of how to start.  I know what I want to say, I just don’t know how to say it, and the blank page is taunting me.  The words of others ring in my ears.  The worries of what some might think hold the words back.  Before the pen touches the paper, I close the book and don’t write anymore.  Its been like this for weeks now.  I have something I want to say, something that I feel needs to be said – but the words are stuck.

Something that hasn’t ever been directly said, but something that I have always gotten from other people is that – many assume I downplay Josh’s diagnosis.  Not many will agree with my thinking when it comes to him, and very few care to hear me out when I speak.  I take what others say, apply what I think will work for him and leave the rest in the dust.  Because when it comes down to it – At the current time, I am the one making decisions for him.

I have always felt that part of Josh’s past, is his.  There are parts of his life that I don’t get into with just anyone, and pieces of his life that I will leave out.  Its his story to tell if he chooses to tell, and if he doesn’t – I am not going to go there.  Its not mine to tell.  All that is to say, he has come from a checkered past and been put through the ringer.  If he doesn’t want to wear matching socks – I am not going to make him.  Let me explain.

When Josh was first diagnosed with autism, he was also diagnosed with other things related to what he had been through.  At the time the diagnosis’s overlapped each other, and it was difficult to find a technique that worked for him.  With so much going on, attacking all aspects was a difficult procedure, and not one many wanted to share in.  Over the past five years, we have worked through some difficult areas with him.  Trust issues, behavioral issues, health issues, the list goes on and on.  And when it comes down to it, autism sits at the bottom of the list.

I don’t downplay this.  I read everything I could when it came to his diagnosis.  I read theories, facts, ideas, questions, answers, and then some.  I took the ideas and tried to make them all work – but all it did was frustrate me, and him – and we got nowhere.  We teetered on the edge of institutions, toyed with the idea of medications, and many sleepless nights were spent watching him.  Begging him to just give me SOMETHING.  Because I was running out of ideas.

Five years ago – I took a week off of work because the phone calls to work were constant, he refused to stay at any daycare, he wouldn’t settle down, he would eat, he wouldn’t sleep, he was only causing harm to himself.

Over the past five years, we have made our way to where we are today.

I don’t downplay his diagnosis.

I just tend to up play him, as a person.  Not a label.

Instead of treating the symptoms – I want to get to the bottom of things.  I didn’t want to medicate him – not because I didn’t love him, but because I knew there was something causing him to react the way he was and I didn’t want to simply suppress this.  Josh doesn’t speak with words.  He doesn’t choose to tell me that he is scared, that things in his mind don’t make sense and that he just needs to know someone will care for him enough to come back.

Medicating him would suppress the only way he has to communicate.  It would silence him, for good.  And yet many well meaning people told me I should simply medicate him – because I didn’t understand what he was going through.  I didn’t understand how badly he was suffering.

I didn’t KNOW what he was going through.  And yet somehow, from the other end of the world – they knew.  They understood.

I spent countless nights watching him fight in his sleep.  I read every single recorded word that was written about him, and listened as they told me about the things he had went through.  I held him as he screamed in terror and clawed to get away.  I sat by helplessly as he hid under the bed, pulling his hair, and making himself bleed.  Yet somehow – I did not understand what he was going through.

This morning – he woke me up just by walking across the room.  I watched as he went through his morning routine.  Turning the tv on.  Talking to himself.  Playing his own games.  And making sense of the world around him.  He caught me looking, and smiled.  I couldn’t help but smile back.  We continued through the morning routine, taking a few extra minutes to try and guide him through the process of getting dressed himself.  A task that many would have already accomplished at his age.

And then he put on two different colored socks.  And I let him.  Because those things?  Are great accomplishments for him.  He walked out the door, raced me across the street and willing went to the babysitters house.  He waved from the window as I left, and when I picked him up – he wasn’t hiding in the corner.

When he takes his pants off at school, I laugh.  Not because I think its good practice to take your pants off in public, but because I know it means hes comfortable.  And because it seems one step closer to that greater goal.

Years of working with him.  Years of SHOWING him that I would come back.  That I cared.  That I did love him.  That I was going to do everything I could – even if I didn’t know what that was, have finally paid off.

Yes, he has autism.  No, I don’t downplay that.  But after everything else that we have already worked through – it doesn’t seem like that big of a deal.  Im not going to tell the world to change because of him.  Im going to tell HIM to change the world, because of who he is – and those who choose to accept him, will be better off for it.  Autism and all.

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One comment

  1. hey just checking in on you I keep losing the bookmark to your page and then whenever I set up a new computer I find it LOL

    anyway reading this entry the thought that kept running through my mind is how lucky these kids are to have you and you them – it makes my heart ache every time I visit your blog and I feel so moved. Thank you for writing your story and sharing it.

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