Wednesday, March 28, 2012

Hate my diagnosis- hate me? I don't think so.

I read a blog today titled "You can't hate Autism and expect acceptance" by Mama Be Good. It was a very well written article that I completely disagree with.

"A parent cannot fully and unconditionally accept his child, but not "the autism."  That's not unconditional.  That's not acceptance.

Why? Children quickly and easily feel their parent's negative emotions and they internalize it, believing that they are at fault for their parent's stress.  While you think you can separate out "the autism" from your child, hating the negative symptoms while loving the child, your child doesn't make such fine distinctions.  He will recognize the feeling, maybe only subconsciously, and he will translate it to "I am acceptable only if I hide part of me.  That part of me is shameful.  There is something wrong with me." "

I think that nothing could be further from the truth. The Boy is awesome, sweet, lovable, smart and IN NO WAY SHAPE OR FORM DEFINED BY AUTISM!  Just as he is not defined by his blonde hair or blue eyes- he is who he is and that is that. I love my son- I love his quirks, I love his honesty and I love his complete lack of judgement for anyone else. I can and will say that I hate autism. On the days he just can't function- where everything is too bright, too loud, too something. The nights when he doesn't sleep, the looks on the kids faces that just don't get him at all when he is talking completely in movie and TV phrases- or meltdowns because "something" is wrong. Yeah- I DO hate autism on those days. As he gets older he is doing so much better. But just because I hate autism does not mean I do not accept my child- nor hate HIM in any way.  I say it all the time- Autism DOES NOT define my son. He is who he is and autism did NOT make him that way. If he didn't have autism would he be a better person?  Easier to love? You can love your child, and hate their diagnosis- it IS possible- and NO it doesn't make you a bad parent.

I say I hate it because it makes life so much more difficult than it needs to be for The Boy.  He misses out on the things that others  take for granted. Birthday parties, playdates, sleepovers, being able to have a conversation, (NOT in movie or TV speak) having independence and age typical skills. Just because I want and work for people to be "accepting" does not change at all how life is for him...and the worry I have for his future.  

I hate the emotional roller coaster that is Autism.  I will not embrace it. I see on a daily basis what The Boy is missing out on- even with all of his amazing progress. And it pisses me off- and dammit I am allowed to be pissed off and hate Autism. This makes me work harder at advocacy, changing perceptions, and helping to change things. 

I don't hate one tiny thing about HIM. Autism isn't HIM. He is The Boy- plain and simple and I adore him.

Me and my boy. Love him- HATE Autism!