Sunday, April 3, 2011

Sticks and Stones Will Break My Bones...

but words will never hurt me...

Whoever coined that phrase was full of shit. Pardon my french. The reality is that words, when spoken by specific people, have the power to truly cause emotion. They can lift a person up and make them smile. They can pull them down and cause them pain. It's very obvious that the phrase was created before the mass effect of Facebook and the ability to read what people truly feel and believe.

Yes I have a reason for feeling this way today. And yes I am going to share it. Because I think that anyone who reads this....both of you....might gather something from understanding the true power of the words you use.

I've shared before that Brat has Asperger's Syndrome. If you don't know much about that, well that is not uncommon. It is a form of Autism, but unlike some forms it is considered high functioning. In other words, it doesn't cause the marked delays that one might see in a child with more severe Autism.

The fact is many people do not understand Autism and those that know a little about it do not understand the many forms of Autism that are on the spectrum. April is Autism Awareness Month and for me this is a time when you help bring that awareness. It's a time to open the eyes of the world to what makes my child different. What makes her who she is. A time to understand that she is not some freak that deserves to be ostracized because she is unique.

I love my daughter the way she is. I will shout that from the rooftops. There are many things about her personality that are brought on from having Autism. And yes I love those things. I should NOT have to be ashamed of that.

That does NOT mean that we have not struggled. Just because she is high functioning does not mean I have not faced the battles other moms have faced. Some of them are the same. Some are different. Even now as a preteen we face battles EVERY. SINGLE. DAY. And at least twice a week she cries and wishes she did not have Autism. I should not have to sit and give proof that yes we struggle. But for the sake of this post I will. Here are just a few things we have struggled with over the years thanks to Autism.

1. She didn't speak to ANYONE except me until she was 8 years old
2. She couldn't stand loud noises as a child even toilets flushing, so going to a public bathroom required two people. One to take her outside after she was finished so the other could flush.
3. Overstimulation would cause her to melt down. THis often resulted in throwing herself into the floor and screaming wherever we were at and she would have to physically be carried out.
4. She would often run when frustrated and this included into streets. She ALWAYS had to have her hand held and you had to be cautious not to upset her.
5. She would bang her head repeatedly on the ground, even concrete, when upset.
6. She pulled her hair out by clumps
7. She couldn't tolerate some clothes and she screamed when her hair was brushed
8. As she got older she lagged behind socially
9. She lacks empathy and the ability to understand how to say the right thing...instead she blurts out whatever is on her mind and this often leads to upsetting people.
10. She has a very hard time maintaining any social relationships.
11. Personal hygiene is a DAILY struggle.
12. She is ostracized and picked on a lot and she doesn't understand that it is happening.

These are only a few of the struggles we have or are facing with Brat. All of these are the result of Autism. So YES. I have faced many of the same issues that others have faced. And every day is still a struggle. Even as a 'high functioning' person she faces a world that is foreign to many.

Just because I treasure my daughter and love her quirkiness, does not mean I am celebrating Autism. Just because I do not spend my life taking on battles that I do not have the time or energy to take on does not mean I am somehow making light of those who have done so. Yes I have raised Brat to believe that this is something she has and that it does not define her. She can be anyone she wants to be. I will not apologize for believing that. I will not apologize for raising her to believe that. Would it be better if I raised her to believe that she were doomed for life because of this? That her dreams could never come true? That she would somehow always be less than?

I am tired of being made to feel like I am less than because I don't subscribe to the doom and gloom theory. That does not mean I celebrate being Autistic. It does not mean that I would choose this for Brat. It does not mean that I wouldn't take her struggles away if I could. I HATE what she goes through.

But the fact is, there is no way to take it away from her. So I'd rather she accept it, own it and love herself in spite of it. I'd rather she believe in the ability to chase her dreams than feel like she were doomed to a life of misery. And I'm tired of people acting like I am somehow not a good mom for feeling that way. Or like I only feel that way because my daughter is high functioning and so I just don't understand.

Autism Awareness Month is a time to make people aware of this disorder. A time to show them what it is. A time, in my mind, to show them how to treat those who have it.

Apparently even those who are aware could stand to learn a little bit of that. Because as the saying goes, one thing you cannot take back is the word after it has been said.