Saturday, January 9, 2016
I write...because I have something to say
For those that need context, in some groups there have been a great divide between parents of special needs kids and adults with disabilities- autistic or otherwise. The divide has caused a lot of controversy. I stayed out of it until recently as my son raged out of pain and I reflected on it. What follows are my thoughts on the matter.
I never weighed in on the whole why I write stuff or the back and forth on all the disability language stuff. Why? Because I honestly don't care. My son isn't part of the stupid inspiration porn (that's what they are calling positive stories of the disabled) because that's not our life. And my son, at least for the foreseeable future, doesn't have a clue what Facebook or YouTube are except to watch his own videos that are posted.
And Kreed has talked about his own autism and he's not a fan. Because it prevents him from leading a normal life. He won't drive. He won't graduate from any school. He won't be giving speeches. He won't be inspiring to the masses. He has life limiting diseases in addition to autism. And right now he's screaming bloody murder after raging all night, and attacking me for the tenth time today. My body looks like it has been in a war zone. His looks worse from the own self injury he has caused himself.
We blog. We film. We write. Our life is out there. Why? Because there are thousands of families like ours that feel 100% alone and deal with violence on a daily basis and have no idea what to do or if anyone else lives like them. We do. We have that kind of autism. We don't have the happy neuro-diverse one. Sorry but not all autism is happy go lucky, look how awesome I have become and can write about my life and use correct language. We have the raw, I hope my son stays alive kind of shit. And no one will ever tell me what I can and cannot write about or how. Because my life is too hard to give a shit honestly. When you can come live our life for 24 hours or better yet a week and learn to live with no sleep, cleaning up unmentionables everywhere and some days, just praying I can keep my son alive and safe for another day no matter what happens to my body.
So as I sit here and my son is yelling because he's not cognitively there after a night of low oxygen, pain and low blood sugars...to me these are arguments are pointless.
We write because we write and have something to say. It could be about our kids that we love and strive to keep alive, keep safe and teach them about the world and protect them against the world. None of us write for the hell of it, or to embarrass our kids or ourselves or anyone. Everyone has a story to tell. Not one person has the right to tell another what they can write about when it's their own life until you live it. Actually Kreed's page has often been complimented by many autistics for how we do write about our son and I thank them for that. But when this exploded all I could do was shake my head and think overall how pointless the divide is. Everyone has a story and The Mighty lets us write about it so maybe somewhere someone will feel less alone.
Now excuse me while I go help my son and hope he doesn't destroy us or him and to teach him to not hurt himself but use his device instead.