What middle schooler hasn't wished to be invisible? The reasons are too numerous to count:
Acne
Bad Haircuts
Clumsiness
Mean kids
Forgotten homework
Sports blunders
Social faux-pas
Being in public with one's parents
Diabetes
Wait...that last one is invisible. Sort-of. Which is good. Sometimes.
With her insulin pump in her pocket and her supplies stashed away, nobody knows my child has diabetes. Until she disappears from the classroom every day before everyone else. Or starts squeezing blood out of her finger at a birthday party. Or gets all glazy eyed and starts chugging an Elmo juice box. Then it's actually be helpful to know that she has diabetes and hasn't gone off the deep end.
She's not embarrassed about her diabetes, though she may go through a phase some day when she is. For now, she's open to questions. But it's not the first thing she wants people to know about her. She'd rather talk about books or music or American Girl Dolls or the Red Sox. She'd rather people know she's sweet and funny and smart.
Yet I suppose if the first impression was a choice between dropping all her stuff while tripping up the steps at the new school, or being seen testing her blood sugar on those same steps, she'd choose the latter.
Would you?
This week is invisible illness awareness week. More information and the opportunity to link your own post can be found here.
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.
"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.
The 504 vs. The Details
My daughter's 504 plan works in conjunction with her medical plan sent to the school by the endocrinologist. It lays out 'accommodations' which protect her from being discriminated against because of her health, and it provides her with accommodations for situations in which her healthcare needs get in the way of her academic ones. The 504 and medical plan work together to provide information and guidelines for staff, and medical orders for the nurse to follow in assisting with her care.
The 504 plan addresses big picture items like being allowed extra time on tests in the event of low or high blood sugar and being allowed access to water and the bathroom at any time.
At the start of the school year, though, it's the little logistical issues which require attention. The existence of the 504 plan allows us to address these without argument, but they would seem ridiculous as bullet points on the acutal document.
We were fortunate at the elementary school to feel we really didn't need a 504 plan. It was a small school with wonderful staff who valued the individuality of each child. They would not let my daughter's diabetes come between her and a full school experience. We chose to implement the 504 in first grade not because of any concerns, but because of how well things were going. We wanted to put what was happening in writing so it would follow her through her whole school career.
It's our hope that we will feel the same at the middle school. But it's comforting to know that, should an argument arise, there's a document to back up my daughter's right to available chocolate-covered pretzels.
The 504 plan addresses big picture items like being allowed extra time on tests in the event of low or high blood sugar and being allowed access to water and the bathroom at any time.
At the start of the school year, though, it's the little logistical issues which require attention. The existence of the 504 plan allows us to address these without argument, but they would seem ridiculous as bullet points on the acutal document.
- Student may leave math textbook and snack in nurse's office to eliminate need to return to locker between gym and math.
- Student may store chocolate covered pretzels in nurse's office in case of unexpected birthday celebration.
- Student may check out books first during library time to allow sufficient time to check blood sugar before lunch.
We were fortunate at the elementary school to feel we really didn't need a 504 plan. It was a small school with wonderful staff who valued the individuality of each child. They would not let my daughter's diabetes come between her and a full school experience. We chose to implement the 504 in first grade not because of any concerns, but because of how well things were going. We wanted to put what was happening in writing so it would follow her through her whole school career.
It's our hope that we will feel the same at the middle school. But it's comforting to know that, should an argument arise, there's a document to back up my daughter's right to available chocolate-covered pretzels.
Travel Trouble
A couple of weeks ago, we took our final trip of the summer. It began with a familiar journey of four and a half hours to grandma and grandpa's house. We would spend a night there and then travel another hour and a half with them to a cabin on a pond in the woods. We make this trip once or twice each summer, and I mistakenly believed I could easily pack what we needed without the extra concentration required for, say, our trip to Florida earlier in the year.
The bad omen came three quarters of the way there, when there was a thunk and a subsequent dragging sound. Sadly it was not from a nearby vehicle, but from our own. The muffler had come loose and was dragging down the highway. My husband heroically secured the muffler to the car with a bungee cord and we traveled slowly but steadily to our destination.
We enjoyed a pleasant supper and researched the hours of nearby muffler places for what we hoped would be a quick fix before continuing on our way in the morning. The only other piece of business for the evening was a site change. Which would require insulin. Which I realized, with a sinking feeling, was at home, four and a half hours away.
Hoping against hope, I peered into my in-laws' fridge. Because we visit often, we leave vials of lantus and novalog there for just such a circumstance. Sadly, my memory was correct that the last time we visited, we discovered the insulin to be near its expiration date and brought it home to use and to replace upon our next visit.
It was 7:45 p.m. If we wanted to enjoy the rest of our vacation, we needed a source of insulin by the time the muffler was fixed in the morning. Our other options were heading home, or visiting the local hospital by evening.
As much as I'm a supporter of small local businesses, this night is why we use a national pharmacy chain. The pharmacist found my daughter's name quickly in the computer system and submitted the request for a refill. Their pharmacy would be open until 10.
Then, "Did you just refill this prescription last week?"
"Yes, but I'm visiting family here and am 250 miles from home. I left the insulin at home."
"I'm sorry, but it's not going through on your insurance."
"Ok...well...how much would it be out of pocket?"
"Let me see...Oh WOW...it's a lot. It's $169."
"Hmm...that is a lot."
Funny how fast your mind can work in these moments. I was considering the obviously higher value of my daughter's life, but also the comparative cost of traveling back home to get the insulin and the immeasurable cost of losing out on a vacation when the pharmacist offered, "Let me call your insurance for you. I see they're still open. Sometimes they will override the cost in an emergency. I'll call you back within the hour to let you know."
Twenty long minutes later, the phone rang. Our insurance would pay for it, and it would be waiting for me to pick up in a few minutes.
Site change waited until morning, but was easily done while my husband went to the muffler shop. We very carefully packed the rest of the insulin vial into our significantly quieter car and hit the road. The subsequent discovery of the forgotten water toys, and the need to re-wear the same shorts a few times were issues which seemed trivial compared to the trip's beginning.
Too many people pay $169 every time they need a vial of insulin. Lots of people end up at the hospital because they cannot afford that $169. Countless people have advocated for insurance companies to cover the cost of insulin, even for people dense enough to leave it at home on vacation.
While it was a stressful start to a vacation, the experience made me grateful for what our family has, and for those who make sure we have it. It was a reminder that there's more to do out there to ensure everyone has access to basic diabetes care.
The bad omen came three quarters of the way there, when there was a thunk and a subsequent dragging sound. Sadly it was not from a nearby vehicle, but from our own. The muffler had come loose and was dragging down the highway. My husband heroically secured the muffler to the car with a bungee cord and we traveled slowly but steadily to our destination.
We enjoyed a pleasant supper and researched the hours of nearby muffler places for what we hoped would be a quick fix before continuing on our way in the morning. The only other piece of business for the evening was a site change. Which would require insulin. Which I realized, with a sinking feeling, was at home, four and a half hours away.
Hoping against hope, I peered into my in-laws' fridge. Because we visit often, we leave vials of lantus and novalog there for just such a circumstance. Sadly, my memory was correct that the last time we visited, we discovered the insulin to be near its expiration date and brought it home to use and to replace upon our next visit.
It was 7:45 p.m. If we wanted to enjoy the rest of our vacation, we needed a source of insulin by the time the muffler was fixed in the morning. Our other options were heading home, or visiting the local hospital by evening.
As much as I'm a supporter of small local businesses, this night is why we use a national pharmacy chain. The pharmacist found my daughter's name quickly in the computer system and submitted the request for a refill. Their pharmacy would be open until 10.
Then, "Did you just refill this prescription last week?"
"Yes, but I'm visiting family here and am 250 miles from home. I left the insulin at home."
"I'm sorry, but it's not going through on your insurance."
"Ok...well...how much would it be out of pocket?"
"Let me see...Oh WOW...it's a lot. It's $169."
"Hmm...that is a lot."
Funny how fast your mind can work in these moments. I was considering the obviously higher value of my daughter's life, but also the comparative cost of traveling back home to get the insulin and the immeasurable cost of losing out on a vacation when the pharmacist offered, "Let me call your insurance for you. I see they're still open. Sometimes they will override the cost in an emergency. I'll call you back within the hour to let you know."
Twenty long minutes later, the phone rang. Our insurance would pay for it, and it would be waiting for me to pick up in a few minutes.
Site change waited until morning, but was easily done while my husband went to the muffler shop. We very carefully packed the rest of the insulin vial into our significantly quieter car and hit the road. The subsequent discovery of the forgotten water toys, and the need to re-wear the same shorts a few times were issues which seemed trivial compared to the trip's beginning.
Too many people pay $169 every time they need a vial of insulin. Lots of people end up at the hospital because they cannot afford that $169. Countless people have advocated for insurance companies to cover the cost of insulin, even for people dense enough to leave it at home on vacation.
While it was a stressful start to a vacation, the experience made me grateful for what our family has, and for those who make sure we have it. It was a reminder that there's more to do out there to ensure everyone has access to basic diabetes care.
Slurpee
Sugar - free cherry limeade slurpee...an excellent low-carb way to cool off on a hot summer afternoon!
Love companies that make nutrition info easy to find online.
And love friends who introduce us to fun diabetes-friendly treats.
Love companies that make nutrition info easy to find online.
And love friends who introduce us to fun diabetes-friendly treats.
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.
Swimming
It gets us every summer, this swimming thing. The afternoon goes like this:
Arrive at pool (or if on vacation - beach) around 2. Immediately disconnect and run into water.
Become hungry around 3:30. Test, reconnect, snack on crackers and/or fruit.
Disconnect to swim again by 4.
Reconnect between 5 and 6.
What I have learned is that, for my child trying to give the missing basal insulin before-hand can and usually does backfire. Two thirds of the time, she'll come out low by 3:30. Deciding this is dangerous anytime, but particularly when waves or water slides are in the picture, we've abandoned that tactic.
We do bolus snack, tacking on any needed correction and just a smidge more to that bolus.
That combination yields an acceptable number by the time she reconnects.
It's after that when the whole thing begins to catch up with her. Unless there's a brisk after-dinner walk or some other unusual evening activity, there's an inevitable high by 9:00.
Yes, a tubeless pump or the 'untethered regimen' could help with this problem, but neither option is on our table at the moment, so we continue our quest for the next best answer.
If only I were a more 'scientific-method' type of thinker. I'd make some charts and create a well-planned experiment.
In reality, though, using the scientific method requires accounting for all possible variables before you can claim you've proven a hypothesis. I can see us at the pool with a stopwatch, timing the connecting and disconnecting windows. She'd also have to engage in the same types of pool activities each day. Practicing her swimming strokes for an hour is different from repeatedly jumping off the edge. Eating the same dinner every night would get old too. That impromptu after dinner walk could skew a whole day's results.
Instead I hapahazardly try a variety of tactics, figuratively closing my eyes and hoping one of them will work (and that I remember what I did so I can do it again tomorrow). If I figure it out, I'll be sure to blog about it here so I can refer back to it next summer.
Arrive at pool (or if on vacation - beach) around 2. Immediately disconnect and run into water.
Become hungry around 3:30. Test, reconnect, snack on crackers and/or fruit.
Disconnect to swim again by 4.
Reconnect between 5 and 6.
What I have learned is that, for my child trying to give the missing basal insulin before-hand can and usually does backfire. Two thirds of the time, she'll come out low by 3:30. Deciding this is dangerous anytime, but particularly when waves or water slides are in the picture, we've abandoned that tactic.
We do bolus snack, tacking on any needed correction and just a smidge more to that bolus.
That combination yields an acceptable number by the time she reconnects.
It's after that when the whole thing begins to catch up with her. Unless there's a brisk after-dinner walk or some other unusual evening activity, there's an inevitable high by 9:00.
Yes, a tubeless pump or the 'untethered regimen' could help with this problem, but neither option is on our table at the moment, so we continue our quest for the next best answer.
If only I were a more 'scientific-method' type of thinker. I'd make some charts and create a well-planned experiment.
In reality, though, using the scientific method requires accounting for all possible variables before you can claim you've proven a hypothesis. I can see us at the pool with a stopwatch, timing the connecting and disconnecting windows. She'd also have to engage in the same types of pool activities each day. Practicing her swimming strokes for an hour is different from repeatedly jumping off the edge. Eating the same dinner every night would get old too. That impromptu after dinner walk could skew a whole day's results.
Instead I hapahazardly try a variety of tactics, figuratively closing my eyes and hoping one of them will work (and that I remember what I did so I can do it again tomorrow). If I figure it out, I'll be sure to blog about it here so I can refer back to it next summer.
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