Sunday, April 29, 2012

Autism Awareness Month will have to wait.

My last post was about Autism Awareness Month. And I haven't written since.

Things have been a little crazy in my house.  And at work.

I have not felt a sense of calm and peace in a while.

Meltdowns, tantrum, tears and frustration are a norm at the moment.  I thought we had moved past it and settled into an adjusted routine, but I was wrong.

So for now, I'm going to go back undercover, and wait out this storm.  We move forward everyday, but sometimes there is no energy to do anything extra.

We're OK.  We have to get through this.  I hope to have better insight another day.  But for now, I'm in survival mode, while under siege of this current shift.

I'm sorry for being so vague. And really, what we are experiencing is nothing catastrophic.  Just a hard go of things at the moment.

Maybe I'll be able to share awareness for "Autism Awareness Month" later.  For now, I look forward to the end of April.

Sunday, April 1, 2012

April is Autism Awareness Month

Today marks the official kick-off to Autism Awareness month.  Tomorrow, April 2nd is the Autism Speaks big campaign to "Light it Up Blue."

April also marks our one year of having an "official" diagnosis for Jonathan.

But I've been thinking a lot about Autism Awareness.  When was I first aware of Autism?

I think back at my childhood.  Did I know someone with Autism?  Was it called that when I was growing up?  I know there were some kids that were a little different.  Then there were the special needs kids that were in other classes too.  There was the non-verbal boy in middle school that won the school talent show for dancing like Michael Jackson.  He would practice his moves at lunch time.  His name was Chris.  And he did have moves.  But did he have Autism?

I also think about a special needs girl, Tiffany who could remember your name and face in an instant.  When she walked down the halls at school, she would wave at everyone and saying hi to each person by name.  Her aids always were prodding her on, because she took a while making sure she said hi to everyone.  She always was smiling and had a childish joy about her.  I remember I saw her years after we graduated.  I walked past her, and I heard "Hi Jen!"  It may have been five years since the last time I saw her.  But nothing changed.  Did she have Autism?  I don't know.

I remember hearing about Jenny McCarthy's son and Holly Robinson Peete's son in the media.  But really, it is like the word "Autism" just hung around in the air...sneaking up here and there in various conversations and news reports.

I don't know when I became aware of the WORD Autism.  But I know when I became aware of the MEANING Autism.   It was a feeling...long before it became officially attached to my son.  A nagging hum. A buzz in the back of my head.  A small feeling in my gut.  No other way to explain it. I tried to fight it off, but the hum, the buzz, the feeling grew louder. 

A new CDC reports that 1 out of 88 US children are on the Autism Spectrum now.  If that statistic doesn't make us AWARE of Autism, then I don't know what will.  1 out of 88.  Last year it as 1 out of 100.  And not too long before that it was 1 out of 150.  It's not just a handful of kids you remember from your childhood anymore.  It's your neighbor, your cousin, your kid's classmate, your nephew or even your child.

I look at my son, and I don't see Autism.  I see Jonathan.  (OK, some days I see Autism, but mostly I see Jonathan.)  Autism is a part of our lives, whether we want it to be or not.  And while I don't want Autism to be the definition of my son, it will be attached to him in some way, for better or worse.

Autism Awareness Month should be about the meaning of Autism, which is far more reaching than just the word.