What Did You SAE?

November 1st.  It's just the beginning of Diabetes Awareness Month!  Around here, we're going to lay out some facts and SAE It Loud!  (Thanks Sarah, aka: Sugabetic, for rallying the troops!)

The idea here, is to SUPPORT, ADVOCATE, and EDUCATE about diabetes...to bring to light the facts on this, too often, misunderstood disease.

There are so many great things happening this month!  Here are just a few:

• SAE It Loud day...cruise around the blogosphere and give some comment love to fellow D-bloggers.  Here's a list of participating blogs from Sarah...
• JDRF Walk at Dodgers Stadium on Sunday, November 7th.  C is captain of her first team and we're excited!
• November 9th is D-Blog Day.  Topic:  what 6 things do you want people to know about diabetes?  Check in with your diabetes' BFF, Gina to learn more!
• November 14th is World Diabetes Day...yes, world!  This is the day to drench ourselves in blue and "bring diabetes to light" around the globe.
• The Big Blue Test will be happening on November 14th as part of World Diabetes Day.
• and so many more things that will unfold this month!

The underlying hope, running through all these events?...a cure.

However, in between, and long after November, life with diabetes will continue.  Every day.  Counting carbs before every meal.  Finger sticking multiple times a day.  The monstrous fear of complications.  I guess it's our motivation then, to raise awareness...and SAE It Loud!

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.

With Age & Experience Comes...

...something to talk about!

I was truly honored to be asked to speak in front of a group of nurses about diabetes.  Yes, me!  Public speaking is so much NOT my thing, that when I look back on this, I just have to smile.

A few months back, a friend emailed me and asked me far in advance if I would come down to Orange County (the other OC) and speak to her collegues about diabetes.  Specifically, they wanted the perspective of a parent with a diabetic preschooler who had transitioned into elementary school.

Well, I was honored.  I was nervous too.  But I said "yes" right off the bat.

I wasn't too sure about what I would say.  But when the time came, I wrote down a few notes about life with a type 1 toddler in the house and how we approached the beginning of preschool and then the transition to our neighborhood elementary school.  I brought with me samples of the diabetes supplies that take residence in one of our kitchen cupboards.  I brought several books that are meant to help kids cope with the diagnosis.  I brought the book C and I had writtten together before kindergarten started so we could explain diabetes in a 5 year old's terms.   I brought our 504 plan. I brought C's favorite doll with a pretend pump pack.  I brought a big poster about C that we had made when she was in preschool with all her favorite things in pictures.  Basically, even though she wouldn't be there with me, I wanted to present her...all aspects of her, not just her diabetes.

I got to the district office early.  I walked in the back door.  There must have been 40-50 nurses sitting around tables in a horseshoe shape with the overflow in a few rows of chairs.  There was a speaker in the middle of her presentation, talking about learning strategies or something of that sort.

My friend spied me walking in and came back to greet me.  We slipped outside to talk for a while.  She helped me gather my things from the car.  My timeslot would be coming up soon after lunch.  I was nervous.

Toward the end of lunch, I began to set up my "stuff."  I sat back down and it was time.  I was given a nice introduction.  I then made my way to the podium.  I looked at my notes, took a deep breath and began.  I felt flushed and began to sweat.  There was a quiver in my voice.  "Excuse me," I said, into the microphone.  I dropped the microphone down and cleared my throat.  I took a sip of water.  And while I was doing these things within a matter of seconds, I thought to myself---Why am I feeling so nervous?  These people don't know me.  I will probably never see them again.  What's my problem?  And in that brief moment a calm came over me.  Here was an incredible opportunity.  Diabetes education...to nurses, no less!

I began again.  I felt confident.  I had something to share.  I actually really enjoyed it.  I told the group that as nurses, they need to realize that the parents of type 1 students are tired, weary.  They are under a lot of stress.  Diabetes is difficult.  And, this is their child.  I went on to talk about different issues when it comes to diabetes and school.  I shared our book and got great feedback. There were questions at the end of my talk.  And I actually felt knowledgable enough to answer them!  It was great.  I was able to give a little plug for my pump gear and handed out some flyers too.

As I packed up my things, they thanked me over and over for giving my time and perspective.  I seemed to have given them some insight into the needs of type 1 kids as they begin elementary school.

As I drove home I remembered how much I would dread getting up in front of a class to give a speech when I was younger.  It was grueling to get an assignment like that.  I never felt I had anything to say.  And then it dawned on me.  Maybe I just needed to live life.  Now that I'm older, life is so very full.  There is so much to talk about.