Unwritten response to the woman from the DOE

A supporter of mine asked why I reacted so strongly. Here was my email to her:

The thing is that I have tried so hard for communication from my daughter for years. All I ask and pray for is simple binary communication, some yes or no response, with that we have everything. She cannot tell me where it hurts when she cries, if she is hungry or thirsty, if she wants this or that. Nothing. We have been to the best communication specialists, the school has always tried, it really is all I ask.

For this [expletive] at the DOE to bring it up and be surprised or whatever she said hit every button. How dare they require my daughter to be asked to self-evaluate. How dare they ask her math. This woman is beyond clueless. How dare the MCAS-Alt Coordinator insist my daughter do things that she cannot do.

My daughter has her own form of showing she understands. There are some games she plays when she is clear, when she is ‘with it’ for whatever that means. We have a game with her knocking the towel on her lap to the floor and me picking it up. It gets involved but when I then look at her and say “you are driving me crazy we need to stop” she looks at me, laughs and stops. At that moment she is in control of gross movements and fully understands me. She reacts appropriately to how I play these games with her, when she can, on her time, her control.

But those times are few and far between.

It must be made clear that this is like asking the blind to see, the paraplegic to walk, the mute to sing. My daughter cannot communicate for any exam, for anyone. What is so tough to understand?

One day I will be asking god why … not why he did this to me (two disabled kids), I have gotten past that, but why He did this to them. I am prepared for a rather Jobian answer. So short of that, I ask the DOE.

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