Awareness

It is April 2nd and my news feed is chock full of Autism Awareness, as this is Autism Awareness Day. April is Autism awareness month.  People are “lighting it up blue”.  I should be excited, but I am not.  I am avoiding the color blue, but you may wear it if you like.  I am not here to write you a feel good story about autism.  I am here to talk about reality.  My son has Autism.  He has had it since he was in my womb.  It did not come from a shot, or anything I ate, or anything that I did when he was little.  He was born this way.  Period.  I don’t believe, despite what Autism Speaks say, that Autism can or should be cured.  My son is not sick.  His peers are not sick.  It is not a matter of a bug in the system, it is not a processing error, it is a different operating system.  Boo Bear is the way he is, period.  He is not Rain Man, he is not a savant.  He is not Temple Grandin.  He does not have a Ph.D. and travel the country talking about how he overcame his disability.  He never will.  He has skills and he is learning more every day, but these victories are hard won.  Teens his age are learning to drive the family car.  My son can’t tie his shoes.  Teens his age are starting to think about college, I wonder if he will ever be able to live semi-independently.  This is not a pity party on my part.  I love my son fiercely and dearly.  I will fight for him until my last breath.  But Boo Bear’s and my reality will never be your reality.  You can think kind thoughts at us for a month, and then let us sink into the background, but we will still be here, plugging away, trying to figure out the ways of the world.  My husband and I will still be here, spending sleepless nights when Boo decides he does not want to sleep, or changing sheets for the 5th time in one night because he had another accident.  We will be the worried parents in the ER after a seizure or another freak accident.  We will still be here. I heard someone once say, ” I would not change my son for the world, but I would change the world for my son.”   This resonates with me.  I don’t want to change Boo, but I want him to learn as many skills as possible to deal with this cold world.   I am not looking for a cure, or a reason, or anyone’s sympathy.  People tell me what a good parent I am and it makes my skin crawl.  They say these things in front of my son, who, though he does not speak, does not miss a word that you are saying about him.  Have a little tact, please!  You can ask  him what he likes to do, or how he is feeling, or any number of questions.  Between the two of us, we can probably give you a decent answer.  But, random stranger, you would rather pat me on the head, figuratively, and tell me what a good job I am doing, or that I am “blessed”.  I will agree that I am blessed, in a multitude of ways, but I think Boo’s Autism is more from a genetic roll of the dice.  If I could change the world, I would not light it up blue on April 2.  I don’t think it really does any good.  You may do as you please.  I am going to focus on my kid and the joy and energy that he brings to the world.   If you want to help, not just in April, but any time, you could ask me how he is doing, or how his sister is doing.  You could come over with a surprise cup of coffee, you could volunteer your time at Autism Society of MN.  There are lots of things you can do, and none of them involve wearing the color blue.  Myself, I prefer purple.