Five Oh Four...or...Diabetes & the Annoying Orange

We had our meeting...the 504 plan meeting, that is.  All went well.

I am so glad that we started having a plan right from the beginning of kindergarten.  I was apprehensive about it back then.  I remember asking the only other family with type 1 at our school regarding their daughter's plan.  She was considerably older than C.  They had never done one.  The Health Aide said there was no need for one.  The nurse agreed.  But something told me, though these people had C's best interest at heart...and, they are lovely people...I needed to protect my little type 1 kid's rights, in writing.

Each year, the plan is tweaked just a bit, to accommodate a growing kid.  As I think back over the last 3 years, I am pretty amazed at how C has grown in her self-management of this disease!  Don't get me wrong.  She will always be able to count on me to be a part of it all.  I read plenty of grown-up diabetes blogs to know she will continually need a strong support system even when she's an adult.  I am just in wonder sometimes, when she demonstrates a deeper understanding of this crazy thing called diabetes!

So...back to the five oh four...

Really, the only changes this year included the point that one of her parents or designated caregiver must be allowed to ride with her on the bus, for field trips.  There had been a couple instances last year that made me feel that it had better be stated in our plan.  The comments and stares from other parents don't really bother me (kind of).  But when her teacher tells me on each field trip day that I'll be allowed to ride on the bus "if there's room," I figured we should include this little stipulation.

Another small change was the simple added statement:  C will work toward testing and treating out-of-range blood glucose in the classroom.  By 4th and 5th grade, I don't want her to miss any instructional time, unnecessarily.  I really just wanted to mention it to the nurse and principal so they have an idea that the time is coming.

During last year's meeting, I seriously wanted the 2nd grade team of teachers to all handle the glucagon kit and be educated about when and how to use it.  It was quite a hurdle for me.  Maybe this year's teacher expected it. He had no qualms about it.  He went for it!  It almost seemed like he couldn't wait to give that orange an injection! Maybe he had heard about this mom who insisted on teaching the staff about how to inject glucagon into her daughter using an orange. Who knows?

I ended up sharing about the meeting later that night with the family.  Big C chimed in..."Wouldn't that make a great Annoying Orange episode?!"...

"Diabetes & the Annoying Orange"

You say you've never heard of The Annoying Orange??  You're missing out...or...maybe you don't live with a 13 year old!

But I Made Bacon & Eggs...

It's been a few weeks now.  I think I can sit back and write about this subject with a little more objectivity than I had at the time.  I think I can...at least with as much objectivity that living with diabetes allows.

We had state standardized testing spread out between 2 weeks of school in May.  This is probably nothing different than any other school, at least in our state.  Letters had come home to inform parents of the testing schedule.  They had some pretty big hints about not taking students out of school for any unnecessary reasons during these times.  Giving our kids some extra protein-enriched breakfasts was also going to be appreciated by the teachers.  Well...okay, I thought.  I can do that!

Middle C put in his order.  "Okay, mom, for the first morning before testing, I'd like eggs, bacon and toast!"

So, I did that.  It didn't throw too much of a wrench into our morning schedule.  Usually, my kids make their own breakfasts, consisting of cereal, toast or an English muffin.  But, hey, the direction was specific...more protein.  So I got up just a bit earlier, made the eggs, bacon and toast.  (Okay, I used pre-cooked bacon!...in fact, I probably will never cook bacon again.)  The kids were happy and tummies were full and off to school we went.

After I kissed and hugged them good-bye and did my usual stop at the health office, I crossed paths with C's 2nd grade teacher.  In a flurry, she told me that the class would be snacking during the testing time and to just let her know "what C can or can't have!"

"Well, I'll just have to come by the room before recess to see what the snack is and what we should bolus," I said.

Oh, no..."you're not allowed in the room while we're testing," she explained.  "It's not going to be at recess time.  The children will be allowed to eat as they take the test...they'll be grazing," she said with a smile.  She had done this for the last 16 years and felt that children did better and stayed calmer if they were allowed to eat during the test.  All the while, we were walking quickly to the lines of students, as the bell had already rung.  She rattled off several different snacks and added, "and so-and-so's mother is bringing in fresh fruit!  Isn't that lovely?"

Lovely?  Hardly.  What was happening here?!

The teacher had the stack of tests piled high in her arms.  I could tell she was in a hurry for our conversation over crackers and fruit to end.  "Just tell me what she can or cannot have and we'll be fine!"  UG!  I felt so not fine at the moment.

"Uh....hmmmm..." I didn't quite know what to do.  I raced into the classroom and saw all the different snacks that had been brought in.  Why I wasn't notified about this was beyond me.  It is even stated ever-so-clearly in C's 504 plan that "the parents (that's me) will be notified prior to any extra food offered in class for special events."

"What can she have?"  The room was filling with kids, scurrying around us. 

"Uh...she can have anything," I said.  "She just needs to test and bolus for it."  Why, at the end of May with just 3-4 weeks to go, I was needing to explain this basic type 1 fact again...ug.

I grabbed some animal crackers, checked the carb count, counted them out, found a paper cup and wrote the grams on it.  "There," I said.  "She can have these...no fruit though.  It's not here for me to see it and count it and feel comfortable about it.  (Uncomfortable about fruit?...yes.)  But she will need to test before and have the health aide work the pump for the bolus."

Well now, that did throw a wrench into the whole "calming, snacky-eating thing" for the entire class!  I was told that C could not be leaving the room to go down to the health office during the test.

"Hmmm," I said, "Can't the Health Aide come into the room to do it?"  I felt like I was asking for a small miracle.

Eventually, things got worked out by the end of the week.  The second half of the testing schedule went along much smoother.  But, sheesh!...it was pure craziness, I tell you.  Nearly at the end of the school year and I was still trying to explain C's diabetes management. 

As I drove home, I kept thinking to myself  But I made bacon and eggs.  I did just what they said to do.  Yep, I made my kids a big ol' breakfast.  Why does C need to snack on animal crackers, pretzels or whatever?  I made a big breakfast. 

In reality, I do know why C needs to snack on those yucky, dry, little animal crackers.  She needs to be just like all the other kids.  And we want her to feel normal...even with diabetes.

I'll Take the #504 with a Side of Glucagon Training, Thanks

Several years before C started school, I had heard about a "504 Plan." I put it out of mind, on the back burner. She was still so young and I would be going to preschool with her so I didn't think much about her legal rights and such.

Then came kindergarten. I had to really wean myself away from the classroom. I ran office errands for the teachers. Ran off papers. Collated homework packs. I'd spy into the room now and then. Meet C in the Health Office for finger checks. And then it hit me. She needs a 504 plan. I need the 504 plan. If I seriously want to be able to leave the campus and, oh, I don't know, go to work, then we needed a plan laid out in black and white to cover all the diabetes bases. Even though the school personnel was wonderful and loving, I needed to put a plan in place for C's protection under the law. I don't know why, but I felt weird about doing this. Maybe it kind of stated loudly, I DON'T TRUST YOU PEOPLE! I don't know.

The only other D mom I knew at the school just left that year! Her daughter moved up to middle school. So I called her. A 504? They had never done one! Wow, I couldn't believe it. She was definitely looking into it now that her daughter was at the middle school.

Hmmm? What to do? I went online and started my search...anything to help me with a plan. I found some to look at, but it definitely had to be tailored to C's situation. CHLA gave me some guidelines too. The site, childrenwithdiabetes.com had tons of examples. And, so, we met to go over the plan with the principal, nurse, teacher and, of course, C. I leaned upon the experience of the principal. After all, her own daughter, now grown, has type 1 diabetes! You would think that would be such a soothing support. And, it is, to a point. But she's the principal and has way more to think about than just my daughter. But, I went with a standard form that she presented. We filled in the blanks, signed it and that was that. I had a difficult time enforcing my wish for glucagon to be kept in the classroom as well as in the office. My initiative to "teach" some staff about C's illness and how to give a glucagon injection was dismissed.

Last year went along without too many diabetes glitches. There was a time when all the first grades were going to do a food celebration of some sort and I wasn't notified in advance. There was a field trip that, post-surgery, I could not go on...and it ruffled some district feathers. But things worked out and they actually hired a "medical" person to accompany C. Maybe a few other times of substitutes rewarding kids all day with candy...that sort of thing. But we got through it okay.

This year, I tweaked the plan just slightly. I worded it so that the entire 2nd grade team, health aide office workers and such, will need to be trained on glucagon injections. This is the one thing that creates so many hypothetical crazy scenarios reeling around in my brain. My biggest fear: a severe hypoglycemic episode and no one around who knows what to do. Although, we've only needed to use it one time on C back when she was just 2 1/2 years old, I know it poses a daily threat to her. The reasons she may experience such a severe low are numerous. So this is the big focus for me...this time round. We will be meeting soon, hopefully this week. I'll put my diabetes game face on. This is such a critical step for me to take. I need the comfort of knowing that several people on campus understand the importance of this facet of diabetes.

So, yes, my order this year..."I'll take the #504 with a side of glucagon training, please. Thanks."