I had written the first paragraph last night...received news that changed the focus....
It always sounds a rather noble to be an advocate. People advocate for all kinds of things and they do it in large exciting ways. Think of Mother Theresa advocating for the poorest of the poor, Dr, Martin Luther King, Jr., Nelson Mandela...the list goes on. No matter what you think of their ideas or what they advocated for, you know they were real game changers. On a smaller, but no less important scale, are parents and teachers who fight
for our kids to receive an appropriate education. One such person was a woman named Janet Camp.
Janet was the supervisor at the Center for Dyslexia at MTSU. The Center helps parents in Tennessee find resources in their area and also tests kids for dyslexia. I had sent Ryan's paperwork to the Center some weeks before. The expected wait time was six months and in the meantime, I was testing the waters on my own. After a particularly infuriating discussion with our county's school psychologist, the phone rang, and it was Janet. Because Ryan had been tested appropriately and thoroughly, she didn't feel he needed any more testing and called to see what help I might need. Divine intervention. I literally burst into tears, told her about the call I had just had with the psychologist, the meeting with the school that left me infuriated and the horrifying fact that my first grader was starting to read better than Ryan and he was starting to get discouraged.
She did not try to calm me down. She let me blow my top and then said kindly and simply, "You have been given very poor information, Mrs. DeMato, you should be upset." She proceeded to give me the news that Ryan had what is known as the "double deficit dyslexia"(poor decoding WITH poor processing) which makes remediation more difficult She even told me not to worry about him not liking to read, he may not ever develop a love for reading. I hung up with a renewed sense of hope and purpose. Yes, you read that correctly - she gave me worse news that I had and yet I hung up HOPEFUL and ready to move ahead.
That is the power of a true advocate. She didn't tell me things would work out the way I wanted or that it would be simple but she gave me a vision of where I needed to go and how I could get there. In the end, I found Ryan a wonderful ,properly trained tutor and then enrolled him in the Bodine School. When he began working with his tutor, he was in 3rd grade and read at about a Kindergarten level. After 4th and 5th grade at The Bodine School, he was reading on a mid- 6th grade level. Janet was the catalyst that set things in that forward motion.
When I attended my first Tennessee IDA board meeting in 2010, I was regretting my decision to say yes. I was in way over my head and nervously gig when I saw Janet's name on the list. I introduced myself to her, she remembered who I was and in a ten minute conversation made me believe I really was a fine choice for the Board. And she was very happy to hear that Ryan DID like to read after all!
When Janet ended up with cancer, she decided to give up the 1-800 hotline she had developed for the IDA. I ended up with the job and like usual, wondered what the heck I had signed up for - I certainly was no Janet Camp and didn't know a fraction of what she knew. I called her several days later and in her usual lovely way told me how pleased she was when she heard I had the job and I was to do it my way, update her notebook, whatever I saw fit to do, I should just go ahead and do. As usual, I felt a ton of weight being lifted off my shoulders after a conversation with her.
I got word this AM that Janet passed away last night. We all knew it had been coming, but that never makes it better. She truly embodied the spirit of
advocacy and will be greatly missed by all who knew her.
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