Wednesday, September 28, 2011
Aspergers or Hamburgers
I guess sometimes I get distracted with the many things that fill my day. Normal stuff... the day to day rigors of parenting, books, writing, school... And you forget to pay attention to the little things. To take out a moment and let the tears make salty tracks down your cheeks as your soul opens up enough to let the worries and fears of being a parent come to the surface.
The tv show Parenthood has a little boy with Asperger's on it. It is a really good representation of what life with a kid on the spectrum is like. He wrings his little hands when he is frustrated, struggles with social interactions and shines with that special little light that so many of these kids have. Every time I watch that show, I am driven to tears.
I have said before that having Princess has been a great struggle and sometimes a practice in patience-- patience with myself when I want to fix things and can't. Patience with her when she does things that aren't 'normal' and patience with others who don't treat her as I feel she deserves.
Today I spoke with one of her teachers and she said Princess was reading and comprehending on a 9th grade level. I literally broke down on the phone and cried as the teacher told me this.
When Princess tried kindergarten the first time through, her teacher was an ass. She literally told me in a conference that my daughter couldn't learn. I wrote a letter to the principal in response to this. I told him that Helen Keller could learn and she was deaf and blind, don't you dare tell me that my daughter, with all of her faculties in tact, couldn't learn.
But she struggled.
Learning to read took YEARS. Literally, I had read the flashcards out loud so many times that my youngest (no more than 3 or 4 at the time) would overhear us. So when I held up the A card and asked Princess what it was, he would reply, from across the room, "A is for Apple. A-p-p-l-e." I would look at her and wonder how the baby could get it and she couldn't. But it was all an uphill battle for her.
To hear from a teacher that she was now ABOVE grade level... I couldn't help it. I cried. It was so good to hear that all the time, all the repeating over and over... It worked. She had done it.
I have said before, that looking at your baby... Lying in that hospital bed and counting the pearly pink toes and seeing such a beautiful creature (she was born looking like she had been dipped in water before being handed to me... Not a speck of blood or ick on her. So perfect and lovely.) and knowing your child is whole and healthy...
To finding out years later that something inside her is just a little off. Something that you can't put a bandaid on or kiss to make better... It kills daily. I can't make the world be nice to her. I can't make it all come easy to her. Learning will always be a struggle for her and sometimes, when I learn things quickly, I feel guilty. Why was I given the ability to grasp concepts so easily and she left to struggle with every nugget of information? It isn't fair!! I would give it to her, if I could.
And late at night, when I am worrying the loudest, that is when I have found that I sometimes yell at God. I beg any higher power that might be listening to make it better... to make it easier... to tell me how to fix things and make the world okay for her.
But no one answers. Not that I can hear.
Sometimes this makes me feel very alone. Like no one would understand how much it makes your heart hurt to not be able to make the world a safe and lovely place for someone you love so much.
And there is that stupid tv show. With that beautiful little boy... and his struggles.
And I cry. Because I am not alone. Other parents are worrying the same fears. Other parents are struggling to do the right thing, make the right choices, not mess up too badly with the terribly wonderful responsibility that comes with these kids.
They see the world in a way that we can't. And if we let them, they give us little glimpses into their view. But the world is afraid of change and different. So sometimes people hurt their feelings for being special. Sometimes I say things and bite my tongue the minute the words come out but you can't take back the little things you say. You can't protect them from everyone all the time...
So the worry is there.
Right alongside the beauty.
Anyway, the point of all this was that it is good that there is a show like this. A program that says, "I get it," in a way that no amount of sympathetic nods can. I like knowing that she (and I) are not alone. That probably it will all work out okay, and if not okay, then exactly as it was meant to.
Today I watched an episode where the little boy was all alone and people called him a freak. I have seen this happen to my kid. But in the end, the people that cared about him were by his side. And she has been lucky enough to have a best friend that has been there since she was in 1st grade... who accepts her and her Princess-isms and doesn't judge her. Someone who doesn't give a rats ass if she has Aspergers or hamburgers... Who loves her for who she is, not the label that was stuck to her.
In the end, that is the most that anyone can hope for. Someone who loves you, despite what may or may not be true about you, no matter what. Someone willing to call bullshit if the moment warrants and to tell you to knock it off when you are being too weird.
Love comes in many forms. The best one I have found is friend.