I walked a mile with Pleasure,Throughout April, I periodically posted on Facebook, facts regarding autism for Autism Awareness Month. Last week was the end of April. And I was foolish. I decided to try and really catch people's attention and be a little provocative and wrote something "catchy". My previous posts had included the definition of autism, prevalence rates, treatment efficacy. I was going to write something about increasing autism diagnosis rates. But I scratched that. (*Idiot*, said to myself.)
She chattered all the way;
But left me none the wiser,
For all she had to say.
I walked a mile with Sorrow
And ne'er a word said she;
But, oh, the things I learned from her
When Sorrow walked with me!
Robert Browning Hamilton
I have recently decided that as strong as I appear to some, I am incredibly wimpy, and have been struggling how to deal with my deficiencies, in particular, in dealing with the school district regarding Zach's services. I feel very alone in this fight, and when I was pushed, I fell down. And I am still struggling to get up.
I am so impressed with some of the other mother's I read about and witness. They probably take for granted their strength. I do not. There was a post that someone put on facebook quoting something about standing up for what you believe in, and that a person with only friends and no enemies has never stood up for what they believe in. I cannot even remember the quote, which makes this story all the more pathetic.
Anyhow, in wishing to be someone that I am not, I posted a provocative post as my last installment for Autism Awareness 2010:
Ever see that Mom with that kid tantruming in the grocery store and you think: "Why can't she control that brat?" Fluorescent lights, loud sounds, strange smells; a child on the spectrum? Quit staring. Better yet, go ask that Mom if she could use a hand. Your choice, but stop being ignorant about autism.
Well, a small firestorm ensued. People were upset, including me. And I lit the match. I was not happy with the way I felt about this. I realized that this just is not my style. I was not happy with the results. It is not who I am. Wimp.
In the end, I guess I am not the in your face sort of person that others are. I was happy that some mothers spoke up and stated that in their pre-autism and pre-parenting days they too were judgmental. Indeed I was too! I am very lucky to have had a friend going through much of this before we did, and I read with open eyes her experiences in her own blog. I scanned much of it, not understanding the technical stuff, only to reread much of it in with a closer eye when we began our own journey.
Our journey is still our journey. Just as each child on the spectrum is an individual with their own symptoms, our family is unique too, like any other family.
My heart still aches for our situation. I wonder if I am still in grief. I wish I was more surefooted about what we are doing. I wish I didn't feel like the system has taken advantage of us in our grief and our own ignorance on how things work.
At so many steps in our journey, I have had various professionals tell me how smart I am. Why do they tell me this? Because I have read a few books, read a few articles on the Internet, and talked to some others who have been through this before me? I feel patronized. I don't want to feel good about myself, I want to feel that the right decisions are being made for Zach and that he is getting what he needs.
We are going to Strong Hospital in Rochester to have Zach evaluated. I prefer to go out of the area for these evaluations. I have serious concerns that intentionally or not, local professionals have concerns more than my son when they give recommendations. First off, they may limit their recommendations to the local resources that are available to the child. And then there is the matter of their reputation: if they give recommendations for needing lots of resources, school districts and local government agencies are likely to squawk at using them. I just feel that going out of the area is more of an independent evaluation of what is needed.
Mother's Day is coming around the bend. No one could love Zach or Sophia more than I do, and I do try to take care of them best I know how. For this, I hope I can be deemed a good mother. I am still working on the advocacy part.