Friday, January 9, 2009

What will happen then?

I work every day for my girl. 

I joined the Community Advisory Committee on Special Education in our district.
Twice I have been to the state capitol. 
I meet with my legislator. 
I attend board meetings. 
I retained an attorney when our district refused to assess her need for a speech device. 
I applied for Medicare three times before she got it. 

Last month, a board of education member told me personally that the board was not going to cut special education. This month, huge cuts to special education are on the agenda. Our superintendent said the decision was basically already made. 

Either Gary Eberhart is a liar, or he is sadly uninformed as the board president. I actually think he is both intelligent and informed. Perhaps there is some other explanation. I hope so.

What scares me most is that these people who I work with every day, who have so little interest in my child and so much interest in their budget, will be the ones who "care" for her when I am gone. 

I hate to say that the worst thing I learned about her diagnosis is that she will most likely out live me. 

If most of the energy of most agencies now goes into finding reasons not to care for her, why should I think that will change after I die?

The true measure of a person is what they will do when they believe no one is looking. Based on what they do when people are obviously looking, I am scared for my girl.