Friday, November 28, 2014
Autism I'm Pissed At You......And I Feel Guilty
I am going to get real here for a bit. It's my blog, I'm entitled to that. I think.
If there is one thing that causes a chasm in the Autism community it's the thought of a cure. When some parents speak of it, others run in and sound an alarm. Autism is part of what makes our kids unique, it's them. Why do we want to cure it? But it's tough, and scary, and a lot for our kiddos to handle. Why wouldn't we want to cure it? It's a hot button topic.
Some message boards and blogs I follow can have heated arguments about who's right, if Autism Speaks is bad for the cause, if ABA is unnatural, and if we have to do this, we can't do that. You're right. She's wrong. It makes my head spin.
All I want is for my son to not be hurting.
Today was one of those tough days. A day where I lost my cool, the cool I usually always have. But even I can get pushed to the limit. If someone walked up to me and said I have the cure for Autism, I would have got down on my knees and begged them for it. Today was one of those days.
I know it's part of my son's fundamental make up. It's what makes him him. The good, the bad, and the ugly. Most days it's the good that shines, the uniqueness, the inquisitive nature, the wonderful energy for life. Today it was the darkness, the pain and the fear. That's the autism I hate.
To see him hurting breaks my heart. To see him lost in this world breaks my heart. To get to the point where we are both crying on the bathroom floor as I hold him back from hitting his head, breaks my heart. So today, yes I am pissed at you Autism.
I'm pissed at you. There I said it. I'm not pissed at my son, please don't ever think that. He is my world, my light, my reason for charging ahead and living. But I am pissed that he has to deal with you, when you make his world so difficult. I'm pissed when he cries that the other kids make fun of him, that people don't understand. I'm pissed when you make him so anxious and wild we get to the breaking point. Yes Autism, that is also you sometimes. And that's when you piss me off.
Is a cure the answer? Would it change the fundamental make up of our children? I'm not really sure. Would I like one day where maybe you could lay off, yah of course I do. Of that I am sure. Would I like our world to be less divided? For our community to stand as one. Yes. But since we don't have the answers, just give me one day where I can be pissed at Autism, and not feel guilty about it.
For that's what is making me feel so bad. The guilt that I hate something that is a part of my child. Me who never hates, who preaches hate is too strong a word and we need to embrace our challenges. I feel guilty for hating Autism.
I'm sure I'll feel better tomorrow, when we have calmed down, and sleep has given way to a new day. But for right now, I'm pissed at you Autism. And I feel guilty.