Weighing Heavily on My Mind
Will I fail my son? This thought is repeatedly played in my mind in a never ending loop. His IEP and evaluations will be done in a few months and this is all I can think about. This is an area of my life that I definately don't want to have any regrets about. I've hired a disability rights attorney and put her on retainer, just in case I need more firepower. She's a good one too. She's argued in front of the Supreme Court of the US and won.
It's not ironic than I'm in the same place my mother was long ago, but she didn't have the means to hire help like I do. She did it all on her own. My mother was a powerful and fearless woman when it came to her children. When the school system wanted to send me to another school, she fought back. She secured an aide (Mrs. Quakenbush) for me in kindergarten and 1st grade when there was no IDEA. I only learned of this during the process of my own diagnosis. I thought Mrs. Quakenbush (yep, that was her name) just rode me all the time, constantly spanking me on the hand whenever I did something wrong. She wasn't being mean as I deserved most of it. I actually did things in order to get her to spank me because I thought it was funny to watch her do it because everytime I was spanked, her big plastic 1970's thermocet bracelet would come flying off her wrist and roll across the floor, prompting me to laugh, which prompted more spankings, which in turn caused me to laugh continously.
At least Mrs. Quakenbush paid attention to me. The general ed. teacher (Mrs. Silver) didn't want anything to do with me and ignored me, almost to the point that I actually died (a story for another time). To me this was much more hurtful than a spanking. Mrs. Silver didn't give a damn about me and her indifference is now painful as an adult looking back on my childhood.
Well its my turn now. I'm going to conjur up the spirit of my mother the best I can and fight like hell, but at the same time hoping I don't have to resort to that. I'd much rather the good CS come out than the bad, "squeezing the lemon in your eyes" CS.
I have one vivid memory of my mother defending me against the school system. It was in the 6th grade and I was sitting in the library while she and the principal and my homeroom teacher were in a conference room. I could hear my mother's voice rise with anger as she spoke to one of the administrators/teacher. I don't remember what she said. But, I remember how she raised her voice and began shouting at the men in that room. She was a single woman at the time with three children, living in a home she built with her first husband who had died suddenly. The home sat on a dirt road, surrounded by Carolina Pine at the bottom of an appalachian mountain called Ben Lippen. My mother was fierce but gentle and caring.
There is a scene in the movie Terms of Endearment that reminds me of my mother. Shirley MacClaine's character in that movie is much like my mother and this scene always brings tremendous emotion for me because it reminds me so much of that day in the library. I think this scene is a good representation of how a parent feels when confronted with people who only view their child as a "patient", not as a human being. In the movie, Shirley MacClaine's daughter is dying of cancer and in a lot of pain. All her daughter has to do is suffer through the pain until 10pm, when she will be given a pain medication. The time arrives and goes and still no shot. MacClaine comes out to ask the nurse on duty to go ahead and give her daughter the shot. The nurse responds that she will get to it in a minute, as she works through her paperwork. MacClaine explodes in a fit of anger caused by her own desperation to protect her child and the lack of compassion and caring from the nurses. MacClaine is there to fight and protect her daughter to the sorrowful end.
Its an instinctual response for most parents. As a parent, you want to see that your child's safety, feelings and dignity are protected. Its a powerful feeling. When the rules are broken and your child is in danger, you burst and explode. Its an instinctual reaction.
This was my mother that day in the library:
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