Monday, April 2, 2012

Part Of Me

There's been so much controversy here in the autism community lately about what's okay to say and who has the rights to say it.  I think that it's always best to try to not be offensive to others, but free speech is so important to me that I believe that everyone has a right to express how they feel, even if it's something I vehemently disagree with.  I still want to hear your side. I want to know what is behind those opinions, those thoughts.  Strong words usually have a story behind them. I want to hear that story and understand what has caused you to take such a strong stance.  I want to hear what makes you think that autism sucks, or why you hate it.  I want to know why some of you feel that only the parents of children with severe autism have a reason to feel angry, or the only ones that can really understand 'true' autism.

Usually, when I try to listen I get past the words to the emotions.  These emotions are strong. Sometimes, they are desperate ones. Sometimes, they are angry over lost time, money, health. Sometimes, they are sad. They are sad for what they think or even know their child endures daily. Sometimes, these emotions are from fear. Fear of who will care for their child when/if they die. Fear for the every second their child is out of their sight, because you know that in their lifetime there is a very, very, very high percentage of abuse and that teachers, carers, peers, and others will target your child due to their vulnerability.  You know that many will never understand your child.  Sometimes, it's a feeling of deep sadness, because you know your child is sad. You know how much they yearn for a friend, and to be accepted and you see that autism is what's stopping that from happening. As parents, we feel so strongly a need to take away these struggles from our kids. We want so much for them to be happy. Sometimes, the parents are just exhausted. They need sleep and they need a break.  There's so much worry that accompanies the parents of autistic children, even when they grow up. You see autism as the problem. If there were no autism, then these problems wouldn't exist.

But, autism does exist. It's a part of me and not separable from me, or my sons.  If someone gets upset about one of my autistic behaviors, I feel they are upset with me. When they hate autism, they hate a part of me. That makes it feel shameful, and bad. Like, something I need to hide away. In doing this, I have carried so much extra burden and self hate. I am now at a place in my life where I am tired of carrying it.  My neurological differences are not shameful.  They are just different. I need to put this extra weight down and relieve myself from carrying these expectations of what society says I should be.  Not because I think autism is something spectacular, but because it's part of who I am and it's not going anywhere. I may as well accept it.  I can't change it.  I can't change the fact that Beans will likely never speak, and may not even be potty trained as an adult. I can't change that Bubby may never go to sleepovers with other boys or be able to read other people's intentions. It is what it is. Some days are good. Some days aren't.  Some days coping seems to be all I can do. I always want my boys to think of themselves as someone who is loved, and deserving of the same respect everyone else is.  I want them to know that their differences may make them different, but still people of value.  I don't ever  describe the using words that are negative. I don't want them to see themselves that way and I sure as hell don't want society thinking of them that way.  Sometimes, I hate it when Beans chews up my power cord to my laptop, or pees on the floor.  I hate the situation , not the autism.  I hate when Bubby throws a fit over a routine change.  I hate the situation, not the autism.  I hate when I go to a social occasion and end up mute, not being able to join in socially, even if I want to.  I hate the situation, not my autism, and subsequently myself. 

That's my take. As I said, always happy to hear others.  Life is guaranteed to come with struggles.  Some more painful, than others. Some, seeming more unfair than others, but we all have our own. Please try to remember that when speaking to others.