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This is a guest post by Rachel Thursby, a mom of a son with diabetes and writer for a blog called What Life Has Become.  Over the summer I heard Rachel talking about having to work on a stressful 504 plan for her son Tristan.  I had to ask her what a 504 plan was because I had never heard of one before.  After learning more about it, I decided it would be a good topic to share with the Blogging Diabetes audience.  I thank Rachel for the information, her story and how incredibly inspiring parents of children with diabetes are to me.  Please read on to learn about a 504 plan.

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The beginning of a new school year is always exciting for both children and parents. New teacher, new friends and back to a routine. For me, the beginning of a school year is always very stressful.

Every year, I have to prepare a 504 plan for Tristan. Students with a disability have a 504 plan to ensure that they have access to the same education as their peers. It also protects the student with a disability against discrimination according to the Americans with Disability Act.

Writing Tristan’s 504 plan is always very emotional for me. Until Tony asked me to write this post, I never really thought about why it made me so emotional.

However, since Tony asked me, I’ve been thinking about this issue a lot. Here is how I can best explain it.

When I write Tristan’s 504, I feel like I’m writing a map to keeping my son alive. Imagine writing down directions instructing people on how your child should breathe. Pretty silly right? I know that it’s a crazy analogy. We all need to breathe to stay alive. My son’s diabetes needs to be managed in order for him to live.

As parents, we don’t want to think about bad things happening to our children. We know it’s a possibility but we try not to think about it.

Every August, I sit down in front of my computer and I imagine all the bad things that could happen to my son in relation to his diabetes. I have to think of the worst case scenario in order to clearly list what needs to be done in each situation. For me, thinking about it always brings vivid images. In my head, I can clearly see Tristan lying on the floor passed out. It’s not pleasant. It’s not pleasant at all!

I have to put in black and white that he will not be excluded from any activities based on his medical conditional (mental image: Tristan sitting in a corner by himself crying because he’s not allowed to participate). I have to write down that he will be allowed access to water and the bathroom whenever he needs it (it’s pretty sad that for his protection I actually have to put this down on paper).

I need to make sure that he is treated fairly. He cannot be disciplined unless we know what his blood sugar number is. How unfair would it be to discipline him when he’s at 40! Not only that, how dangerous would it be? For his future, I need to make sure that he doesn’t take any “formal” tests if his blood sugar is out of whack. All of that has to be in writing. All of it, every little detail.

I don’t like to think of my son as having a disability. He’s just a little boy. A normal little boy who happens to have type 1 diabetes. But according to the law, he has a disability. It’s now my responsibility to ensure that he is treated the same as everybody else and given to same opportunity to have a bright future.

I’m not looking for sympathy. I don’t want it. I do however want people to understand that there is a lot more to diabetes then meets the eyes. It’s not only a physical conditional. It messes with your mind and your emotions. As much for the child as it does for the parents.

I hate doing Tristan’s 504 plan. I wish that I didn’t have to do it. I am my child’s advocate. I need to protect him until he’s old enough to protect himself. Therefore, through my tears and my fears, every August, I will write his 504 plan without fail.

For more information from the American Diabetes Association:

504 plan information, click here.

Sample 504 plan, click here.

Sample Diabetes Medical Management Plan, click here.

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If you are interested in providing a guest post, please contact me for more information or to submit a proposal.