I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Friday, September 20, 2013

Fighting for our children

I remember sitting in on my first talk by Crystal Jackson. She suggested so strongly that children have 504 plans in place.  At the time we did not have one.  I mean, why would we?  Everything was going so well with Jessica in school.  The teachers were supportive, the principal an advocate, the nurse very well educated in Type 1.  Crystal said to me "now is the time to create one...you want to create one while everything is going so well."  I am glad I listened.

Jess has entered the unchartered territory of middle school.  What an incredibly different experience from elementary school.  Despite meeting with the middle school counselor and nurse back in April to try to make sure her transition to middle school would be smooth in regards to her diabetes, it has been anything but.  We were not given the opportunity to meet with her teachers despite asking.  We were told in middle school the nurse and counselor take care of making sure teachers understand her Individualized Health Plan and 504.  We were assured this had been done.

Jess takes her first math test.  Her blood sugar is 89 and arrow down.  She makes the decision to go off the dexcom rather than a fingerstick.  She is 11, but now in middle school so there is no involvement from the teacher.  A hard thing to manage alone at 11, when you desperately want to fit in.  You don't want to draw attention to yourself.  For the first time she now doesn't want anyone but close friends and teachers to know she has Type 1 (in direct contrast to elementary school when she spoke to the entire school on behalf of the JDRF.)  She writes 89 and arrow down on the corner of the test as she has always done, has some skittles and starts to take the exam.  She feels lower.  She stops the exam and does a blood sugar check.  She is 72 and feeling terrible (probably going down fast.)  The teacher tells her that since she was in goal when she started the test she needs to continue it.  Jess asks for 5 minutes.  She doesn't feel well.  She is "shaking like a leaf."  The teacher asks why she is not taking the test.  Jess explains she is low and can't concentrate.  The teacher than tells her she has never seen her get low in class before, and asks if Jessica will be getting low for every exam.  She asks Jessica how this is supposed to work and if Jessica is supposed to complete the test during the teacher's free time.  The whole class is listening.  Jess tells me she was near tears.  Finally, the teacher tells Jess that she can stop taking the test and that she can come back during study hall during which time she will have "one minute to complete the test."  Jess is devastated.  An email to the counselor confirms that the teacher gave a slightly different variation of the story, but with the general premises.

The teacher is not a bad teacher.  We are not angry at the teacher.  The teacher does not understand Type 1 diabetes or Jessica's 504 plan.

Many emails have ensued and today we are finally being given an opportunity to meet with Jessica's teachers as we have wanted to do since last April.  My hope is that it will be a time to educate as well as advocate, and that we can work as a team as was always the case in elementary school.

And, I am incredibly grateful and relieved I took Crystal Jackson's advice.  I was shortsighted to think things would always go well, so why would we need one?  Crystal was exactly correct that the best time to create one is when things are going well.  We now have it, and we will use it to make sure Jessica's rights are protected.

It is upsetting the time and effort this is taking.  It is hard not to be angry that my child has been hurt.  It is hard not to hate diabetes.  Yet, instead I focus on being thankful.  Thankful that we were able to attend a lecture by Crystal, and thankful that she gave me such good advice.  Thankful for the American Diabetes Association's Safe at School program and the help that is available.

I hope this story has a happy ending.  I hope the meeting today goes wonderfully and that Jess goes on to have access to safety and the ability to reach her potential.  Until then, I will continue fighting for my child and raising awareness so that all parents can fight for the safety, happiness, and ability to thrive for their Type 1 children.