Monday, February 22, 2010
Dear Doctor Who-Ever-You-Are,
I've gotta tell you something.
And I want you to listen, even though, it's all about the fact that you don't seem to want to listen.
Let me start by saying, I know I appear a little crazy. A little unwound around the edges. I've always been a bit like that, and now that I have this kid who has a bunch of challenges... I don't get around to winding up the edges as much as I used to.
But the words that come out of my mouth are true. I'm not making things up. I'm not inventing problems. I am genuinely concerned. I may be a little on the over-concerned side, but work with me.
I don't know a lot about autism. I guess I will never know enough about autism. But I've learned some stuff over the last six years. About autism, and about Billy.
1. He registers pain differently to the way I do (and maybe even to the way you do)
For a long time, he felt no pain at all. We thought he was 'tough' and even 'brave' when he fell over, bruised or cut himself and just got up and kept on moving. No... that was him under-registering pain. After lots of therapy, he now feels pain, but we can't be sure how much or how little. It's hard to quantify, when you've got nothing to compare it to, and when comparison is not one of the skills you were hardwired with.
So, statements like 'he doesn't look like he's in pain' don't really have much substantial, medical meaning.
2. I do not want your job, and have no interest in making you feel threatened.
But I will advocate for my child, and that may include pointing out some things that may not have occurred to you yet (see, I'm being charitable...). If it's OK for you to acknowledge that you are struggling to choose the right words to get Billy to do things - 'Can you point your foot, Billy?' 'Yes!' says Billy as he proudly points to his foot - then why is it not OK to acknowledge that someone who lives with a condition every day might have some information you may not have thought about... in relation to that condition. Especially when it has a direct influence on WHY WE ARE HERE!!!!!
How can you diagnose someone, when you are closing your eyes to the fact that the information you are seeking will have to come to you in a different way than usual.
3. It's not rocket science - be nice, and people will be nice back to you
I'm not sure anyone, even someone who is genuinely paranoid, appreciates being called paranoid. You, and all the doctors before you, who choose to ignore my son's needs because you do not think I have enough related degrees to have a genuine conversation with you, can bite me.
Seriously, bite me.
You can keep your stinking vaccines and your antibiotics and your insistence that we should toe the line for the 'greater good'. You can keep your opinions about the level of responsibility we exercise in parenting our child. You can keep your toxic, germ filled, dollar driven workplace to yourself.
It's like being trapped in an ugly, co-dependent relationship.
Thanks for nothing,