Teenage Thoughts Interrupted

This is only a sample of what I imagine is circling through my daughter's mind, on repeat, every day:

when am I eating next
4x+y=47...where do I start
what's my blood sugar
when is that English essay due
we're running in gym today so I might be low
I wonder if Molly can come over after school
I'm sitting for an hour and a half in the assembly- I'll probably be high at lunch
I love the new Nick Jonas song
the school schedule changed for the day so lunch is really early- that'll mess up my blood sugar
should I get a new mirror in my room
should I have dinner before or after tennis so I don't go low
my piano recital is on Saturday
is it site change day
which dress should I wear for 8th grade graduation
why am I high
I need to get something for grandpa's birthday
should I ask all my friends to stop and wait for me while I check my blood sugar
why are my friends arguing over where to go for lunch on Friday
how many carbs are in this dish of Italian ice
are the Red Sox on tv tonight
should I correct again or will I crash because I might only be high from being nervous about the quiz
when are auditions for the summer musical
did I silence the dexcom or is it going to alarm during the concert
maybe I'll call my cousins tonight
why are there no clean measuring cups so I can measure my rice for dinner
that panda video is adorable
should I go to the nurse for this 69 blood sugar or just eat a couple of glucose tabs at my desk
should I ask for a new phone case
I need more dexcom tape
maybe we could shop for shoes for the 8th grade dance this afternoon
I have to bring more juice boxes into school tomorrow for the nurse's office
does the library have the book I'm waiting for yet
where did I leave the meter
is it my turn in words with friends with grandma
I have to remind mom that we need to reorder the pump supplies
should I post a selfie on Instagram today or is it too soon since the last one
maybe I'll just have cucumbers and hummus for snack so I don't have to count carbs
I'm so excited about this ancient Egypt history project
I can hear the alarm but where did I leave the dexcom
this box of tic tacs is almost gone

Efficient

"People with chronic conditions are able to lead efficient lives when they effectively treat their disease."

This is a loose quote from my daughter's Health class notes.

I was helping her study for her quiz on non-infectious diseases.  The notes about the two types of diabetes were accurate, if vague, but this sentence gave me pause.

The Dictionary.com definition of efficient is this:

performing or functioning in the best possible manner with the least waste of time and effort; having and using requisite knowledge, skill,and industry; competent; capable

I suppose most of this is truer than my initial reaction assumed.  With the requisite skills and competency, people can manage chronic conditions and live well.

But I still struggle with the 'with the least waste of time and effort' part.  I suppose it's not 'wasted' per se, but managing diabetes takes an enormous amount of time and effort.  So much so that it decreases our efficiency in many other tasks.

Diabetes decreases my daughter's and often our entire family's efficiency in:

-preparing and eating a meal

-getting out of the house to go anywhere, even a walk around the block

-taking a shower

-getting in and out of the pool

-ordering and eating a restaurant meal

-getting through airport security

-packing for vacation or even a day trip

-any task which is sidelined by a low or high blood sugar

-sleeping through the night

And that list barely grazes the surface.  So yes, we're grateful that she has the tools to live well.  But sometimes diabetes still slows us down.  Efficient still isn't a word I'd ever choose to use to describe life with diabetes.

A Big Deal?

This Diabetes thing is a really big deal. 

Please don't make a really big deal about it.

These sentences are from a post I wrote about meeting with the nurse and teachers before my child started fourth grade.  These words were an attempt to sum up what I was trying to impress upon the school staff about having my child in their classrooms.  

I wanted them to be worried enough that they'd keep an eye on her.  I wanted to make sure they wouldn't let her forget her emergency bag for fire drills.  I wanted to be alerted when there was a change in schedule or a class party.  I wanted diabetes to be in the back of their minds always, just like it's in the back of my mind at all times.

Yet at the same time I wanted her to be just like every other kid in that classroom.  I wanted her diabetes to be as invisible as possible.  I wanted her to participate in every aspect of school life just like the other kids.  I wanted her to go through her day without being constantly asked if she was o.k. or given any special attention.

Ditto for the rest of her life.  This quote pretty much sums up our household's diabetes philosophy.

This Diabetes thing is a really big deal. 

Please don't make a really big deal about it.

We do our fair share of worrying. We are prepared with all of the supplies and information we need to keep my child healthy.  We remain aware of what her blood sugar numbers are, and how the next activity might change them.  When she's easily flustered, or lethargic, or absurdly giddy we ask her to check her blood sugar to determine whether she's low, high, or simply 13. When there's a diabetes issue we stop and take care of it. But all of this stuff remains, as much as possible, in the background of an otherwise full and normal life.

She goes to school and does her homework.  She sings, acts and plays two instruments.  She participates in sports.  She stops to buy a snack with her friends on the way home from school. She hikes and swims and kayaks.  She goes to friends' houses, birthday parties and sleepovers.  She eats out and travels.

It would be easy to let anxiety about all of the what-ifs of this disease slow us down.  It would be easy to say no to so many of these things.  

But we'd rather not make a really big deal of it.

Today's Diabetes Blog Week topic asks us to share a favorite sentence or post we've written, or to share why we started the blog in the first place.  Find the rest of these posts HERE!

A Mystery Story

The phone rang.

'School' read out on the caller ID.

When I answered, I could immediately hear the fuzzy echo of speakerphone.

My daughter's voice: "I don't know what my blood sugar is."

She has 2 meters at school, one with her and one in the nurse's office.  There are 3 other kids with diabetes and the nurse has a back-up.  There's no way this information wasn't available.  "What do you mean?"

"I checked with the one in my bag in the classroom and I was 195 but I felt really high so I came down here anyway.  I washed my hands and the one in the nurse's office says I'm 348.  I checked again with the one in my bag and it said I was 297.  Then we tried the nurse's spare one and it said I was 140."

The nurse chimed in throughout the story and concluded with, "We really aren't sure what to do next."

There I was, on the other end of the phone, expected to solve this problem.

Ultimately we decided that I would come to school with her meter from home, the one we use all day every day. She was instructed to drink some water and went back to class for the time it took me to get there.

I remembered on the way out the door that I had a bottle of control solution. I threw it in my pocket with the trusted meter.

Our meters at school checked out with control solution. The nurse's was a different brand so we couldn't test that one.

My daughter was called down from the classroom.  She checked on 4 meters.

Home:  290

Personal Nurse's Office:  260

Purse:  266

Nurse's spare:  254

We corrected using 260 as a safe average and sent her back to class.  I left her home meter with her for the day with newly opened test strips.

Meanwhile, Strip Safely anybody?  We need to keep encouraging the FDA to tighten standards.  I can't figure how this was caused by anything but technology failure.

Her Voice

Sometimes my daughter will treat a low at school and I'll find out later when the nurse has a moment to call. Other times, particularly when she's really feeling the low, I'll get a call right away.

The phone rang the other afternoon.

"I'm... 59," the voice at the other end of the line said.

There was a brief pause.   "I'm...I'm drinking juice."  Slurp.

"Good.  What were you at lunch?"

"I..I...don't know. Should I...go... back to class?"

"Um...no.  I think you should sit with the nurse and check again in 10 minutes."

"O.k.  Yeah.  I will."

I'm certain the nurse would have kept her there anyway, and that the phone call was mostly to hear my voice.

What was unsettling was to hear her voice.  It was quiet, hesitant, scared.  Her thoughts came slowly, foggily. It made me want to get in the car, drive over there, and hug her tight.

Ten minutes later, the phone rang again.  "Hi!  I'm up to 79.  Should I do anything else?"  The confident, happy, energetic, clear thinking kid was back.

"Chew a glucose tab just to be sure and check again between periods."

"O.k.  Bye!"

"Love you. Bye!"

And she was off.

Wordless Wednesday: Back To School Supplies

The Delayed Opening

This mess caused a delayed opening of school today.

The delayed opening caused a bigger mess, blood-sugar-wise. 

Causes of said mess included:

• Neglecting to check blood sugar before finishing most of breakfast.  The excitement over extra pajama time distracted us terribly.
• Spending an ordinarily sedentary half-hour scraping ice off of our car and driveway.
• Lunch at the civilized but unusual hour of 11:14.
• Gym following lunch in a more rapid fashion than usual.

Soon I will drive her home in what is now just a wet mess, with ice turning to slush and fog.  Things will presumably begin to take a more ordinary course.  Homework, piano, then perhaps a few pages of her book before dinner.

Hopefully diabetes picks up quickly on this return to routine.

Worry

The tragedy in Newtown CT and its aftermath are heartbreaking.  There are difficult and complicated questions to be addressed.

Yet, for some of us left behind, one of the repercussions feels familiar.  It's the anxiety of dropping a helpless child off at school, in the care of others.  Those of us with children with diabetes (and countless other medical, emotional, or mental health needs) are particularly familiar with this feeling. 

So this morning, as I dropped my daughter off at school, unable to not think about Friday's terror, I summoned some coping skills I've used before. 

I kissed her goodbye, told her I loved her, and confirmed our plans as to how and when she will return home.

I watched her cross the street with the crossing guard and walk to the school doors. 

Then I brought to mind the adults she will spend the day with, reminding myself that I trust them and that they have her best interests at heart.

Each day, though some days more subconsciously now, I remind myself that the staff at school know how to take care of her.  They know about her medical issues and how to address them.  There is a plan in place for her care.  Beyond that, her teachers and other school staff are concerned about her as a growing and maturing individual and do their best to help her in any way they can.  This is, of course, their job.  But from what I see from the outside, she's been fortunate to have teachers and other staff members who take it an extra step.

By extension, I must then trust that in all other ways her school is as safe as possible.  There are plans in place for many types of disastrous situations.  Communications from the school district say more plans are being made.  She is in the care of good and kind people who have their students' best interests at heart.

There is no way to be sure what each new day will bring.  Potential hazards lurk around every corner.  All we can do is prepare for foreseeable eventualities as best we can. Then we take a deep breath, and send our children off into the world, trusting those in whose hands we leave them to do their best to keep them safe.

Text Me A Picture

Today we're trying a new tactic in diabetes management.

There's a Thanksgiving feast at school today.  In elementary school, I always volunteered at these things.  I do enjoy being around kids, and probably would have helped at many events anyway, but the need to monitor what my daughter was eating made my attendance essential if she were to participate.  By 4th grade, she was able to handle some simple carb counting on her own, like a slice of pizza or a packaged snack.  Anything without a set portion size was, and still is, too much.

Middle school is a new world, though.  Parents are not invited in to help with class parties.  The kids are on their own.  We had to come up with a plan which would allow my daughter to participate in this event without me hovering over her.  The school nurse is a great help with many things, but can't be expected to know how to eyeball a buffet plate and pronounce the number of grams of carbohydrate on it.

Enter modern technology.  The school nurse will text me a picture of my daughter's plate.  My daughter will then call me and we will work together to tally the carbs.  I'm not sure how clear the photo will be.  Will I be able to tell if there are marshmallows in the sweet potatoes or how deep the pile of stuffing is?  The element of taste will be gone on my part too.  I'll sometimes have a bite of a pie or cranberry sauce and realize it's significantly sweeter or denser than I'd estimated.

We'll see how it all turns out.  I don't expect her to come home with a blood sugar of 130.  What I do expect is for her to come home happy.  She'll have enjoyed trying foods from other families' Thanksgiving traditions.  She'll have had a few bites of the cranberry sauce she helped prepare.  She'll have taken another small step towards diabetes independence.

504 Resources

Last week I met with our school's 504 team and finalized my daughter's plan for this year.  In the past these meetings were somewhat routine.  Going into a new school, with a more complicated schedule and a whole new cast of characters, I felt it important to do my homework and enter the process prepared.

Below are a few resources which might be helpful to parents who are entering the 504 process for the first time, or who are looking to make some significant changes or updates to one which is in place:

The American Diabetes Association has a Safe At School campaign.  This includes a publication which they will send to you and/or your school.  It provides comprehensive information about all kinds of diabetes issues which could arise and ways to handle them.  The Safe At School section of the website provides links to additional staff training resources as well as sample 504 plans, and good advice about working with staff to obtain the best support for your child at school.  There is also a very thorough section on legal resources.  It explains channels through which to proceed should you be unable to secure a 504 plan for your child, or secure the reasonable accommodations you wish to have in there.  Also helpful is a directory of applicable state laws which relate to diabetes in school.

The Juvenile Diabetes Research Foundation puts out a 'School Advisory Toolkit'.  It comes as a hard copy from your local chapter, or is easily requested to download yourself.  It contains an overview of the 504 laws and practical information to help put one in place at your school for your child.  There are helpful samples of 504 accommodations as well as sample forms for different circumstances, such as one for a teacher to leave for substitutes.

Both ADA and JDRF have helpful back to school webcasts which can be viewed anytime through their websites.

Children With Diabetes has a page on Diabetes At School.  It contains links to a multitude of resources.  These include sample plans and forms, legal information, SAT testing rules and advice, and links to a variety of publications and websites which also deal with this issue.  Unique to Children With Diabetes is the opportunity to look at past polls, message board conversations and ask the expert results around this issue.  Reading how real-life situations have been resolved can be helpful in brainstorming solutions for your own.

A common theme throughout these resources bears repeating and emphasizing. Taking the time to make sure school staff understand a bit about Type 1 Diabetes will go a long way.  Educate staff about the effects and dangers of high and low blood sugars and the process of keeping them at bay. Explain, with examples if you possibly can, how diabetes has affected your child's school day in the past.  Use this information as the basis for making your requests regarding how your child's diabetes is handled at school.

Our 504 process ended with a mutually agreeable plan.  More importantly, it ended with our school's staff having a better understanding of Type 1 Diabetes.  Most importantly, it ended with an understanding that my daughter, the school's staff, our doctors, my husband and I are a team working together to keep my daughter's diabetes from getting in the way of a good education. 

Brunch?

The fifth grade eats lunch at 10:17 a.m. 

"Most of my friends don't seem to mind," was the report.
 
My daughter minds.  A lot.  Because she's a normal person. 

Her response to the problem is our challenge.

The first day, she ate most of her lunch.  The second day she ended up in the nurse's office chugging a juice box since she'd bolused the carbs and then decided she couldn't finish. 

Over the weekend, the lunch issue became an all-consuming, awful problem in the way problems do best when you're in middle school.  All of the anxiety about every aspect of this new school experience was funneled into the lunch predicament and there was no possible solution.

By day three, she had herself so worked up about it that she was sick to her stomach.

Thankfully she's pumping, so we have some flexibility in eating patterns.  But from a regular-people perspective, she has to eat something between 7:40 a.m. and 2:52 p.m., and keep it down.

While she's got flexibility, she's used to eating regular meals on a regular schedule.  It's likely that while the pump allows for different mealtimes, a regular eating pattern makes it easier to keep her blood sugar more stable. Perhaps most significantly, it's her preference (which isn't really odd at all) to eat lunch at noon-ish and small snacks between meals.

Yes, she has her 504 plan which would allow her to eat anytime.  But she can't eat while practicing  the keyboard during music class.  Or while trying to do weather experiments in science.  And, along with every other middle school child, she doesn't want to be 'different' any more than she has to be.  So we seek a way to make this schedule work. 

Our next experiment is two snacks.  One at 10:17, and one at 2, when all 5th graders are allowed to snack if they need to.  A generous policy to make up for the ridiculous lunchtime.  She can then have another substantial 'snack' when she returns home.

Today the anxiety seemed to be dissipating a bit.  Yesterday she ate her two snacks and spent the whole lunch period with friends instead of the nurse.

Perhaps an omlette station in the cafeteria would help.

Best Laid Plans

In September, my daughter transitions to the middle school. (A sentence which in and of itself causes alarm.)  In June, our previous school nurse was kind enough to facilitate connecting us with the middle school nurse.  We spoke a few times by phone, and at the end of the school year, my daughter and I stopped by for a reassuring visit to the nurse's office and a guided tour of the 5th grade wing of the school.  We learned that the nurse was a former pump trainer, and that there was an older girl in the school with diabetes.  We left feeling comfortable with this nurse's diabetes knowledge and, as a bonus, having enjoyed spending the hour with her.

Therefore, today's letter including the fall schedule and some other details about the 2012-13 school year literally brought tears to my daughter's eyes.  "We're pleased to welcome our new school nurse, Mrs. Not-the-one-you-met-in-june." 

Primarily, of course,  I hope all is well with the original nurse, and wish her well wherever life has taken her.

But oh, how I wish it hadn't taken her anywhere.  Selfishly, I'm upset that the time and energy I spent with her in June is lost.  More importantly, much of my child's comfort about starting this new school came from knowing the nurse understood the whole 'diabetes thing,' and that she could then focus on the rest of the new experiences of middle school.

For all we know, nurse #2 is fantastic.  For all we know, she's a Certified Diabetes Educator, or has gracefully assisted dozens of kids with diabetes through middle school, or is the kindest, smartest person in the world, just waiting to learn all there is to know about type 1 diabetes. 

My daughter's diabetes skills in terms of checking, bolusing, treating lows are good.  Professional support is important, but with the emphasis is on support.  She needs someone she's comfortable sitting with for 5 or 10 minutes after the juice box.  Someone who gets that her greatest wish is to be in and out of the nurse's office in a flash at lunchtime so she can eat with her friends.  Someone who can calmly guide her through troubleshooting a weird high or a pump alarm. Someone who she can confide in if a teacher or student gives her a hard time about diabetes stuff, and who she trusts to handle that information well.

Until my Monday phone calls are returned, though, the new nurse is an unknown.  Pit in the stomach, tears in the eyes unknown.  As with many things diabetes, just when you think you have everything figured out, it's time to start all over again.