Be Human

Down by 2, but the game is not over.

My daughter was diagnosed with a disease. A lifelong, never-going-away disease. This disease may affect her ability to participate in school. So far it isn’t, because we are doing our best to prevent that from happening. But time will tell. It’s too early yet to know.

There are protections put in place by our government to make sure she can safely attend school without making this disease and the impacts on her health worse. I asked the school about them a few days before school started. I was told I did not need those protections. It would be fine, they said.

It felt like I lost the first battle. Down by 1.

My daughter’s doctor instructed us to initiate the process to put the protections in place. The doctor gave us a letter specifying the importance of this.

I tried again with different people at the school and was scheduled for a meeting to discuss the possible protections. Progress, I thought!

A few days later, after twenty minutes in the meeting, talking about the importance of keeping my daughter safe and ensuring she has a “normal” educational experience, I was told the protections were not appropriate. My daughter has a disease that qualifies her for protections. However, that disease is not currently affecting her ability to learn, so no protections needed.

But isn’t the point of the protections to make sure her ability to learn is not impacted? Isn’t the point of the protections to make sure the damage is prevented?

According to the school, if her ability to learn is impacted, then I can go through this process again. But if she is impacted, isn’t that too late? Shouldn’t we be preventing the damage in the first place?

It felt like I lost the second battle. Down by 2.

If I were my own best friend I would tell myself it is okay to feel angry and frustrated and sad. I would remind myself this is a long game, not a short one. I may have lost the first two battles. But I will keep coming. I know these people are kind people and they are doing their jobs as best they can, but I find myself so very, deeply frustrated right now.

I will keep fighting for my daughter’s rights and safety. The school has given me an alternate option that I will start with for now. I will start learning the system and figuring out how to help my child be safe at school. I will not give up. I may be frustrated, but I will not quit.

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