Friday, May 4, 2012
I'm in the grocery store a couple days ago and my autistic son, Aydan now 7 years old is out of control. He's running up and down the aisles, pounding his hands all over the bread and runs up to a strange man who he pushes from behind. The man turns around as most people do when this happens with a look of disgust.. first at Aydan, then at me.. 'horrible mother.. that you are.. you should be ashamed..' all over their faces. Coming in at 62 pounds and 4'9", I am forced to put Aydan in the grocery cart, like a toddler in order to finish the shopping. As we're walking through another aisle, there is a child around 3 years old, also sitting in a cart filled with the average American diet.. processed cheese, Lucky Charms cereal.. She looks at me with full eye contact, a beautiful smile and says with perfect articulation, "hi.. how are you?", I respond, "fine, how are you?" Then she addresses Aydan, "how are you?" Aydan has no response, I ask Aydan if he would please say "hi" to the little girl, he responds... "ba..". See "ba.." is one of the only sounds he can utter... "ba" means whatever you want it to mean. It could be.. hi, bye, mommy.. whenever he is asked to speak.. he says "ba.." sometimes he says "pa.." sometimes he says "bye bye.." but that's about it. A couple weeks earlier the service coordinator from the Regional Center that provides in home therapy for Aydan's disability is in our home for an annual review. He decides this person is not welcome in our home.. he pinches her and when asked to stop begins to throw strawberries at her.. I guess it was a well communicated desire, be it unacceptable but understood nevertheless. Case worker says, clearly he's not improving very much and needs a new, more intensive intervention perhaps.. okay.. "What level is he?" she asks. "What do you mean, level?" I reply. "In school.. what level is he in school?" Oh.. "he's in the first grade." "No.. I mean what's his level?" "He functions at the level of a 2 year old, does that answer your question?" There is no level. "Oh.." is the only thing she can think to say. When Aydan was first diagnosed I used to love hearing stories of autism recovery. It would sit in my memory file under "something to try." This child recovered using this.. file that one under "reinvestigate in a year"... this child recovered using that... file under "too expensive but in desperation reconsider".. a child recovered from this after being very severe, file under "do whatever you can to get that started immediately." Today.. 4 1/2 years later, little has changed except for Aydan's age and size. I now have a very different feeling when I hear those stories, something along the lines of what you might think when you hear about someone who won the trillion dollar lottery. You aren't mad at the person, you don't want to take it away from them but you maybe disconnected from it, as if it's something that only happens to other people.. you might even wonder why that is. I get a lot of advice.. people tell me to try this or that or the other.. usually it's already been tried.. sometimes it hasn't.. sometimes it's helpful.. sometimes I can't afford it.. sometimes it's unrealistic.. and on and on... There's never a shortage of things to keep in the memory file. You see, it isn't that I want to take the lottery winnings away from someone else.. it isn't that I wish I had a trillion dollars.. it isn't that I want the little girl at the grocery store to say only "ba.." but it would be nice if when asked I could say, "yes, Aydan's at this level.." "Well, he's in the first grade but just started to draw.. or color.. or hold a fuckin' pencil.." It's that I want a LEVEL! It isn't pretty and maybe I'm bitter and maybe I'm a hater and maybe I don't deserve it but it's what I want and I can no longer fake it. I can't pretend that I don't want to hear the stories.. I WANT A FUCKIN' CURE!! Where's the cure? Don't tell me, it' isn't going to be easy.. I ALREADY KNOW IT ISN'T EASY!! Does anyone think this has been easy? Oh.. I know, I'm blessed.. because it could've been this or that.. but this wasn't divine intervention, it wasn't God's way, it wasn't random and chance.. it was a vial of poison injected into my toddler son... and that is where he has stayed... THAT is his level. Do I sound hateful or angry or bitter?? I'm not proud of feeling this way.. I'm not proud that I no longer want to be around my friends with kids because even my friends with autistic children have managed to reach some level of recovery... it hasn't been easy for them.. I know. I know they've earned and struggled and fought tooth and nail.. but so have we. I feel at some point this is no longer acceptable to talk about.. at what point do I go from being sympathetic to annoying to just plain "get over yourself". I don't know.. maybe I'm already there. I once wrote this monologue in college about a person who has a nervous break down while sitting in a traffic jam. She described being in a hot car with no air coniditioner, no radio, broken windows.. all she could see was cars.. cars on top of cars on top of cars on top of cars on top cars... as her voice lifted she began to shout "and I am liKE THE CARS.. NOT MOVING.. NOT GOING.. NOTHING BUT CARS ON TOP OF CARS ON TOP OF CARS..." Now imagine you have been sitting in that car for nearly 5 years. Do you still want to judge me for being bitter? And please don't think I'm giving up.. I don't want to give up.. I would never give up.. is that really even an option? How does one even consider that in this situation? Give up how? Go where? Leave it all behind and live in Parisian commune? Does that even exist? No.. of course that isn't what's happening here. I will always reach back into the memory files and say "what about this?" But I can't help but to think every now and then about these past 5 years and feel pain for their loss. I keep praying and hoping and plotting and deciding and working my ass off.. to get out of this hot car and it will always be that way.. that is.. until.. we finally get out. Wouldn't you do the same?