Saturday, May 10, 2014

#DBlog week Day 1

 Today’s topic: “Let’s  kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up.”


We've been dealing with school and diabetes since 2008 and every year I think it's going to get easier. Every year, every year I am proven wrong.

Dealing with misconceptions, wrong information and just plain stupidity, to be honest, can be a hindrance in dealing with the normal obstacles of a new school year. Each teacher presents its own set of frustrations and sometimes major issues.

Since kindergarten when he was diagnosed we've had a 504 and of course medical orders . Regardless of how many meetings we have, every year sometimes the same teacher, sometimes a new one, asks if something is necessary, true or if he's taking advantage.

 One thing that really sticks out in my mind is when J told the teacher that if he's under 80 or over 180,  he feels uncomfortable. She told him he didn't make sense, she has had students that would be 400 and feel just fine. After two meetings, two phone calls and finally a letter from his doctor, she finally got it. 

Another major issue we  encountered, was J  being extremely low or going down on Dexcom, and being told to go to the nurse, and refused to give him a chaperone or call the nurse to get him even after explaining how dangerous this can be. 

I could go on and on about all the things we have encountered, J being chastised in the lunch room for eating a brownie, asked if he can eat that, questioning his bolus at a party, if he should, if he could, what if, are you allowed, are you sure, and so on. At the end of the day it is up to us to really educate and make sure our children are safe and being respected in the school environment.

I truly believe that every child with diabetes should have a 504 in place,  I also believe that they should have your own cell phone to text their parents anytime during the day if an issue were to arise. I believe in giving ourchildren independence to take care of themselves but at the same time knowing when to ask for help.

One of the things that I am doing right now to help other new parents who are dealing with the school system, as part of my JDRF mentor chair is to go over 504 programs, protocols, suggestions for nurses, cheat sheets, and event planning for parties, school trips, field day, etc that may help a new parent you in the school year.

Another point that I really would like to add, if you your child are unhappy, if your child is feeling not treated fairly, if you basically feel like there's any issue with teacher, nurse, nurses assistant or any other staff member, contact your principal, 504 liaison, superintendent, and make your voice heard.

School is supposed to be a fun time for our children to focus on being a kid, learning and building friendships. 

Unfortunately diabetes is a big part of school, but it doesn't have to be a negative part of it.

If anyone needs assistance in building their 504, or is having school issues and needs resources or advice please feel free to email me:

Autoimmunemayhem@gmail.com

That is my contribution to day 1 of D-Blog Week.

4 comments:

Kim said...

I appreciate all you do for J (and, by proxy, the rest of the diabetes community). Thank you for continuing to raise your voice, Alexis.

Lesley said...

You rock. It is so overwhelming for D-parents to deal with 504 plans, school bureaucracy, and keeping their kids safe - what an awesome offer to change someone's world. Thanks!

Erin Michelle said...

I love your graphics and your education philosophy. Thanks for the post!

Karen said...

I hate that you both have had to deal with these hassles. (Hassles doesn't seem like a strong enough word though . . . . ) And I'm so grateful that you are stepping up to help others navigate through them. You and J rock!!

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