504, IEP, and other educational jargon

Having taught for most of my adult life, and working with high-schoolers for the last 5 years, I am quite familiar with 504s and IEPs.

An IEP is an Individual Education Plan or Program which, as a Montessori teacher, I feel every child inherently possesses. But the term IEP refers to a legal document, which outlines accommodations and special services that will be offered to students with learning disabilities while they are enrolled at their school (usually public, but not always).

A 504 plan, on the other hand, generally refers to kids with physical disabilities or special needs. This is a less involved, but still legal, document which outlines the specific needs of the student, and lets teachers and staff members at the school know how to accommodate them so that they are not academically punished for things that are beyond their control.

As a teacher in a high school, I usually receive scads of these documents at the beginning of the year. I look them over before the student joins my classroom. Then, after a few weeks of getting to know the students, I pull them out again to see if I am seeing the same person that the document outlines. I also take a moment to reflect on how to best meet his or her needs.

Some of the documents at this age act as more of an FYI: the student has a condition which may never manifest itself in the classroom, but might cause absences due to specialty visits or surgeries. Some of them are even outdated.

I was very concerned when I had a student who had, according to the document, a tremendous fear of dogs. I was instructed to give the child the option of leaving the room if a dog was ever spotted near my classroom. I thought, "When will there ever be a dog in or near my classroom?"

Well, as it happened that year, I was a "traveling" teacher (one who did not have a classroom to call her own, but borrowed other teacher's rooms for teaching). And guess what?  I ended up on the ground floor of the building with a large window facing over the neighbor's yard: a neighbor who happened to be outside with her large dog throughout the entire period in which I taught this student.

Every day.

While I sweated out how to accommodate my student's needs, I discovered that the 504 was written when he was six years old. After some discussion with the student, I learned that the concerns outlined in the document no longer applied, and I needn't draw the shades during class.

Obviously with diabetes, it's different. It will always apply, because one does not outgrow it, as one might outgrow a fear of dogs.

I am not sure how much a 504 helps students with diabetes.

There are parents that swear by them (laminate that 504 and nail it to the teacher's door). I just don't happen to be one of them.

So, yeah. Sometimes M's teachers forget that she has diabetes.

But I also know diabetic students at my own school, who have very clear 504 plans, and very vocal parents, who are still given grief when they need to go to the nurse's office, or are accused of texting in class when they are actually giving themselves a bolus while using their pump. Parents can yell and point at the 504 plan. They can hold annual meetings. They can even call in a lawyer. But it really doesn't save them a lot of work. It is still up to the student to remind the adults in the room that they need accommodations.

Which I guess is the real lesson, here. While younger children might not be able to, diabetic teens need to advocate for themselves, even if it is before, during, or after class. Even if it doesn't seem fair. Even if people "should" know. Even if they don't want to talk about it in front of their peers.

The squeaky wheel gets the grease.

A good health advocate is learning skills for life.

Educating others helps us all.

Insert platitude here.

But, it's true. And M is learning that it is so.  Even if she doesn't like it.

STAR- FYI

STAR is the name of a program that M has joined this fall.

STAR: Steps Toward Adult Responsibility.

The program is sponsored by Dartmouth Hitchcock Medical Center in Lebanon, NH. The two meetings that we have attended have been on the Dartmouth College campus.

The group is for teens who have chronic conditions. Right now, the majority of them seem to have type one diabetes, but there have been students with a variety of illnesses including crohn's disease, epilepsy, and cerebral palsy.

The group is also designed for the adults who parent these young people.

It is a mentoring program. The teens get to spend time with college students who are dealing with a chronic illness, and the adults meet in a separate room with various experts and each other, to discuss the pitfalls that their children are facing, and how best to prepare them for future independence.

The kids definitely have a better time than the adults. While we are discussing care plans, we hear the kids roaring with laughter in the other room.

I first heard of the program when M attended the Winter Weekend last February. The Weekend was a program aimed at teens with type one. About 35-40 kids attended, and M enjoyed herself immensely. I had basically coerced her into going, but after attending and hearing about the STAR program, she decided that having regular meetings with others who face similar challenges might help to keep her on track, both emotionally and practically.

Now I don't know if I can draw a direct correlation between her participation in STAR and her improved attitude and A1c numbers. After all, she is maturing as well. But I do know that she is enjoying the meetings, even if they are 40 minutes away.

I enjoy them less than she. I, like most of my fellow type 1 parents, am very opinionated about what should and should not happen in the life of my child.

And we don't all agree.

But now I have a group of parents with whom I can discuss any concerns I might have.

Like how to change my doctor.

But that's another post.

Dominoes

Last week, M woke up with a pretty nice bg level: 125 mg/dl.

Then she ate a low carb breakfast of bacon, eggs, and half of a hamburger roll (Don't ask me about the hamburger roll. I was not part of that discussion, if there was one).

We arrived at church about an hour later. We were early. M reached toward the glove compartment, saying, "I feel low". She retrieved a handful of Smartees.

"Please check your blood sugar," I said.

It's 35.

We popped our seatbelts back on and cruised to the pharmacy, where I hurriedly plucked some glucose tabs off of the shelf in the back where there are about 58,000 bg meters on display. Then, knowing that M is often thirsty when her bg is especially high or low, I grabbed a water bottle.

I gratefully approached the customer-free counter, payed for the items, and jogged out to the car, where M started chomping down tabs.

I pulled out the calculator app on my phone and estimated that she should eat 3 glucose tabs (15 carbs) in addition to the two packs of Smartees (13 carbs total) that she has already eaten. Any more would start her on an upward spiral. At roughly 5 mg/dl increase per carb that M eats, she should have a nice bg level of 140, which would give us a little wiggle room.

We returned to the church, attended mass, and met M's boyfriend du jour and his mother in the parking lot afterwards. M had plans to spend time at their house that day. Since they live near the church, and not near our home, we decided to meet them there. I, at this point, am having my doubts about the wisdom of sending M to someone else's house, but I assume that her bg will be in a more comfortable range at this hour. We did the typical pre-departure bg check: 37mg/dl.

Panic ensues. I mean, she just ate a pile of pure sugar an hour ago. If anything, she should have a higher-than-ideal bg level. How could this have happened?

I had a quick conference with M. "How much did you bolus for this morning?"
Answer: "42 carbs"

I would like to pause here for a moment to point out that M handles these fact-finding inquiries much better now. A year and a half ago if I had asked any questions pertaining to figuring out "how this had happened" she would become angry, defensive, and startlingly teen-like.

But back to our story.

Let's revisit the aforementioned breakfast: bacon, eggs, half of a hamburger roll. Bacon: zero carbs. Eggs: zero carbs. A whole hamburger roll: 30 carbs so HALF should be 15 carbs. 15 carbs total for the meal. Not 42 carbs.

Insulin for 42 carbs is way more insulin than M needed this morning. We are lucky that she hasn't passed out yet. I ran into the church hall and grabbed her a coke. I ordered her to drink the whole thing: 39 carbs of fast-acting sugar. Times five is nearly 200. In theory, her bg should be 242 in a matter of minutes.

At this point I would like to point out that Boyfriend's mother is a nurse. As such, she insisted on having M over for the day despite the scary numbers we were reading in the parking lot. After all, she can handle it (which I know she can). I worriedly agreed, and asked that M promise to call me in one hour.

After two hours and no phone call, I called her. Boyfriend's mom tells me that M's bg is still low. It's about 48 - 50 mg/dl. She's having her hang around on the couch instead of helping paint the house as planned. She is forcing orange juice in 4 oz portions. She is making her check her bg every half hour.

Two more hours went by, and I called again. This time I spoke with M. She told me that her bg was now 325. After multiple attempts to bring up her bg, we have now overcompensated. She just bolused, sending insulin through her body to bring her bg back to normal. Boyfriend's mom tells M that she expected this. That we all expected this. Now we need to be careful and not overdo it again.

But no luck. When I picked up M two hours later, her bg was 53.

AAAAAUGH!

After 24 hours, we were back on course. But there is a valuable lesson to be learned here: really think about the number of carbs for which you are bolusing. Over-correction can be frustrating, time-consuming, exhausting, and dangerous.

And it can set off a chain-reaction for which we are unprepared.

It's amazing how life stops when these incidents happen. Our only focus is to get back to normal.

Well, diabetic normal.

Let's just say that rather than cleaning up after ourselves, it's easier not to start tipping that row of dominoes to begin with.

And let's thank God that that these incidents don't happen very often.

New Traditions

It's weird how having a child with a chronic illness can creep not just into your lives and habits, but also into the lives and habits of those around you.

Case in point: birthdays.

I have blogged in the past about cake. I hate it. It seems to be cake, above all, that M's body and insulin together cannot handle.

And yet it is everywhere.

But not in our family.

In our family, we have a new tradition: ice cream cake.

This tradition began with M's birthday.

Since she cannot eat cake without having uncontrollable bg numbers for 24 hours, we began looking for other fun options. We tried ice cream cake. While it still has huge numbers of calories and carbs, the carbs seem to seep into M's system at a more steady rate than regular cake, and are therefore easier to manage over the 24 hour span that follows.

When we first figured out M's cake issues, she simply ate the ice cream at birthday parties, with no complaint from her, nor from me or Bill.

It wasn't until my father's birthday that I realized that ice cream cake was the new family tradition.  Grandparents, aunts, uncles, nieces and nephews all shared ice cream cake at Papa's birthday without even a question. No reference to regular cake was made. It was as if we had eaten ice cream cake at birthday parties all along.

Which leaves me with a few thoughts. A) I have a very cool, thoughtful, and supportive family, B) Everything changes when you have a kid with diabetes, C) Diabetes can't stop you from having fun unless you let it. and D) Change, while sometimes annoying and unwelcome, can be good.

Sick kittens and other things that piss me off

Not long ago, I saw this article in my local newspaper (yeah, I read the paper, and not on line either).

Campaign for a kitten

The article is about a woman who adopted a 9 week old kitten, only to learn that it has a birth defect. Its ribs are growing the wrong way so that they will not protect his heart. In fact they will eventually pierce his heart an kill him.

The woman is heartbroken and decides to raise money for the surgery, which will need to be performed twice, because he will grow and change, and they will need a special casts that will need to accommodate his growing body, etc. (For Seinfeld fans, I am reminded of this quote from George Costanza: "So they're flying in special tiny instruments from El Paso") The estimated cost for all of the kitten's needs is about $1500. Donations could be made to the "Misty the Kitten" fund.

So how did that work out, you might wonder? After all, that is a ridiculous amount of money to raise in a short period of time.

But when Misty reached 11 weeks, the campaign had raised $2046 with 12 days left in the campaign.

WHAT!??!

Not to sound bitter, but I can't even get my coworkers to give me $5 for diabetes research. Diabetes, which kills thousands upon thousands of people every year.

But wait, there's more. This happens: Misty the Kitten Dies Post-Surgery.

Super.

Stupid kitten.

Now the woman who created the fund has a bunch of money left over and she wants to use it to support other hopeless sick kitten cases.

So once in a while I read another article about some other hopeless case of a cat that would probably prefer sweet death to another pointless and painful surgery using the LEFTOVER FUNDS from the "Misty the Kitten" fund.

Fine world, have it your way.

Empty

I have noticed that M is balancing her diabetes care pretty well over the last few months.

Don't get me wrong. She still has plenty of bad habits.

She leaves bloody test strips in her meter case. Sharps from her infusion set are frequently left in the open, or on the floor, even.

But there is one thing that she seems to be doing more and more frequently these days, and it concerns me. She is waiting until the last minute to change her infusion set. And by "last minute", I mean that she waits until there is no insulin left in the cartridge.

You see, the insulin pump looks like a pager. In the "pager" part, is a little reservoir cartridge which holds insulin; usually enough for a few days. There is tubing that leads from the pump to the cannula, which is the little straw thing that is inserted under M's skin and distributes the insulin that the pump sends from the reservoir.

"Are you sure that she knows that she is low on insulin?" you might ask.

Oh my, yes!

Pump manufacturers are geniuses, you know. They have all kinds of user error prevention going on in that little device. There is a "low reservoir" alarm which lets M know, through a noisy and rigorous vibrating, that she has a couple of hours of insulin left, and that she had better get all of her medical stuff together so that she won't run out.

Up until recently, when the alarm sounded M would go immediately to the medicine cabinet to get a new infusion set, and go the fridge to get another bottle of insulin.

But friends happen.

The first time I remember M waiting until she had run out of insulin, we ended up staying very late into the night until her blood glucose reading returned to under 200. That night, she knew that she would run out of insulin during a play at her high school, but she didn't want to keep her friends waiting while she changed her infusion set.

Then she ate a Reese's Peanut Butter Cup.

Then chaos ensued.

It was an unplanned, exhausting, and clear lesson in "doing what you have to do when you have to do it."

But only part of the lesson was learned, it seems. After all, she will still choose not to respond to her alarm in a timely fashion.

Now when she does it though, it seems to be more calculated. She figures out how much insulin she will need to get her through the night, and if she thinks it's going to be close, she'll simply go to bed, ignore the infernal buzzing of the pump's alarm system, wake up the next morning with a somewhat high bg reading, and then change her infusion set.

Not recommended, by the way. Those alarms are there for a reason, missy!

Maybe she is trying to save herself time and effort. Maybe she is trying to save our family from higher-than-necessary medical bills. I am not sure what motivates her to wait, but it makes me nervous.

As M is often the child that needs to learn things through experience, we may just have to hope that her calculations and time estimates are always correct.

In the meantime, I will apply the usual dose of nagging.

The specter

Sometimes I think that, as a D-parent, I face the specter of my child's death every day.

While that's not entirely true, sometimes I am scared. When she has a crazy low blood sugar reading or a blood sugar high that just won't come down, I feel the cold grip of fear grab at my chest, my stomach, and my knees.

In the meantime, I have to act calm, as if I am merely a little tense, and not thinking that I might have to rush my daughter to the hospital to be revived. Or worse.

These moments are usually fleeting, but I hate them. And the expectation that I might have one of these moments is a daily occurrence.

But I still have my daughter. She is alive, and healthy, for the most part. She makes me laugh, and frustrates me nearly every day, just like an ordinary (or extraordinary) teenager. She makes bad choices. She makes good choices. She deals with her diabetes, sometimes with aplomb, sometimes not. But she is here, and I get the chance to see her grow, as long as we are fortunate enough to keep this disease in check.

I am fortunate that I have had three years already that I wouldn't have had with her if she had been born 100 years ago.

But I have seen enough of those God-awful youtube videos about diabetics to know that she could die young. Very young. Especially if we are not careful. Especially if she is not careful.

And I love her.

And it breaks my heart that early death is always an unspoken part of our conversations about diabetes. And sports. And travel. And overnight stays at her friends' houses.

And sometimes it doesn't seem fair.

But then again, neither does this: The other day, my cousin, whom I love very much, suffered the terrible and unthinkable loss.

She lost her son.

Her healthy, young son of whom she was very proud.

At 19 years old, he was killed in a car accident.

The funeral is this weekend.

This is a death that one cannot anticipate. A loss that cannot be predicted. He was not sick. He was not at war. He was driving a car.

And I am at a loss.

How do I comfort someone who is dealing with the very thing that is lingering in my heart every day? My grief for her and her family is overwhelming.

It seems so unfair that a young man with so much potential could simply be plucked from this world.

My cousin is coping with what I truly believe to be every parent's greatest fear. My greatest fear.

And I wish that I could do more for her than pray.

Good friends, Bad friends

Along the journey through teenhood, every child likely has to face some decision making regarding her friends. Do I still hang around with that guy who smokes? That girl who is so boy crazy that she'll probably end up pregnant before she's 16?

My reply has always been: If you find them to be valuable, and you are bringing them up, rather letting them bring you down, I will not interfere. After all, we have all made mistakes, and sometimes a good friend helps us to see the better path. Who am I to judge?

Well, now. Let's throw diabetes into the mix, and what constitutes a "good" friend and a "bad" friend changes. A good friend never makes his friend feel like diabetes is a burden to him when hanging out with him. He is curious about the disease and what to do if there is an emergency.

But as I peruse the assortment of friends that M and some of my students have asmassed, I realize that friends can have a strong influence on a teen's desire and ability to manage the disease.

M has a friend who is a lovely young lady. But every time M returns from an overnight excursion at this friend's house, her bg levels are out of whack: usually very high. M says that when she and this friend are together, they are "too busy" for her to check her bg levels or measure her food intake. So she routinely comes home with a bg of 330 or higher.

How does a parent handle a stituation like this? The friend is not encourging M to do anything illegal, immoral, or outwardly dangerous, like hitchhiking. But she is, consciously or not, discouraging her from doing something healthy. After all, not treating yourself for diabetes can be just as dangerous as using ilicit drugs, couldn't it?

So why would a friend of a diabetic NOT encourage her friend to take care of herself? There are, of course myriad reasons: 1) the friend forgets that her companion has diabetes 2) the friend does not know how dangerous diabetes is 3) the friend thinks that squeezing blood out of your finger at the dinner table is "icky" 4) the friend can't deal with the seriousness of the disease 5) the friend is always in a hurry to do the next thing, and the diabetic child does not want to "be a pain".

The fifth answer is a big one. M doesn't want to make a big deal about her diabetes. I believe that she thinks that a night of high bgs is worth a visit to her friend's house. Not good, but understandable.

But then she has other friends, just a few, who stay on top of it, and ask questions about the disease. These friends demystify the disease and are not afraid of it. When M is with these friends, her bg is much closer to her target level when she returns from a visit.

I can't blame the friends themselves. M, after all, is the one who needs to make sure that she is in control of her diabetes. I cannot put that kind of burden on other 15-year-old girls, who are mostly dreaming about the clueless boys in their biology class.

I can't help but wish for a special kind of friend for M: the kind of friend I like to call the diabetes hero friend. It seems to me, however, that it is mostly boys who have this type of friend.

The diabetes hero friend knows what a high blood sugar is, what a low blood sugar is, and frequently has exciting stories that go with that knowledge. I hear stories from these boys about climbing trees to get their delusional-super-high-blood-sugared companions down to the ground and to safety. They have injected their friends with both insulin and glucagon (at different times, obviously) They laugh about their diabetic friends going into diabetic rages while driving the car with a high blood sugar. And they tell the tale of how they took the wheel from their friend and got them to the side of the road without injury.

Diabetes hero friends know what to do in an emergency!

I once had a diabetes hero friend tell me that if our country ever really wants to win a war, it should put diabetics with high blood glucose levels on the front lines, because they are "crazy angry", and "don't feel pain."

When I tell someone that I have a child with type 1 diabetes, I have real respect for people who say, "I know what you mean, my best friend growing up had diabetes", because that usually means that they have a pretty intimate knowledge of the disease and its consequences. And some wild stories to go with it.

Of course, to have a diabetes hero friend with stories, one must have reasons to be rescued.

Fortunately for M, that has not yet happened.

So, I suppose I will settle for a few friends that ask M if she should eat that, or if she needs to check her bg. Even if she gets tired of hearing it, at least she'll know that they care.

And that they are trying to be good friends.

Good friends are worth their weight in insulin.

Instant gratification, the diabetic version

Still reading Think Like a Pancreas by Gary Scheiner and finding some useful tidbits. The author's style is much more friendly than I am accustomed to reading in the tomes through which I have usually slogged.

One chapter especially caught my eye, as I know that it can be hard for M to understand what the big freaking deal is about maintaining a consistent blood glucose level.

People often recommend that I introduce M to people who have lost feet or vision or kidney function due to diabetes.

The thing is, I know that M already knows the consequences. She knows that this disease, unmanaged, can kill her. But as a teen, it is just one of those other annoying things that can kill you, like walking across the street without looking both ways, or snorting bath salts, or swimming without a lifeguard present.

So how about another approach?

Think Like a Pancreas recommends pointing out what controlled blood sugars can do for you, instead of pointing out that poorly controlled bg can hurt you.

For my lovely M, this "instant gratification" alert might just work, especially because she is an athlete. Below is a list of short term benefits to controlling one's bg levels:

• Enhanced physical performance (better hand-eye coordination for stopping lacrosse balls)
• Enhanced intellectual performance (keep mom off your back about your grades!)
• Enhanced social/coping skills (deal with problems without embarrassing yourself in front of your classmates or the public in general)
• Better sleep (feel rested in the morning)
• Fewer infections (and colds!)
• Healthier skin (No acne or dry, flaky skin: includes dry scalp issues)

I can vouch for the veracity of the above list.

So can M.

Her bg-induced mood swings are notorious, and her ability to focus also varies with her bg levels. I also remember noticing that M's skin looked better immediately after her jaunt to the hospital, where we learned that dry skin is one of the many, many symptoms of diabetes.

I photocopied the page and stuck it to her mirror so she could see it in the mornings. She asked me about it, nodded, and put it in her room.

I can't say that she's been reading it, but her bg levels have been steadier than they had been in a while.

So here's to the power of positive thinking.

Diabetes Blog Week

As I continue this journey with my unwelcome guest, diabetes, I learn new stuff all the time.

November is diabetes awareness month.

The American Diabetes Association and the Juvenile Diabetes Research Foundation are both good organizations with differing philosophies.

Some DNEs don't like it when you read or ask questions.

And this week is Diabetes Blog Week. This is the time of year when we are supposed to look around, find blogs that we like and share them.

So here we go.

My favorite diabetes blog is the first one I found. I was desperately looking for coping strategies, when I found Six Until Me by Kerri Sparling. At the time she was pregnant and discussing the trials and tribulations of her diabetic pregnancy, which at times made me weep. She has a nice, light style, and she evidently blogs for a living.

The next blog that I bookmarked was Typical Type 1 by Jacquie Paul Wojcik. She reminds me of what a grown-up M might be like. She drinks beer. She leaves her nasty test strips lying around. She is witty and insightful about the reactions of others to Type 1.

The only other diabetes blog I have on my bookmark sheet is Death of a Pancreas by Joanne, a Canadian immigrant who now lives in Texas. Her daughter is much younger than M, and even though we have never had a direct conversation, she and I do check out each other's blogs. She to look a little into the future, and I to remember that I am not the only insane diabetes momma out there. I discovered Joanne's blog when Kerri posted the video "What NOT to say to the parent of a Type 1 diabetic", which is hilarious if you run in diabetic circles.

I tried to get M to blog about her experiences. I thought other kids might benefit from her discoveries as a diabetic. She gave it a shot. I think she posted about 6 or seven one paragraph posts. But I realized that I wanted her to do it more than she wanted to do it.

Then I realized that I wanted to do it.

So here we are, nearly two years and 98 posts later, still babbling about the diabetic experience from a parental point of view.

I am always giddily pleased when I run into someone and they say that they have read my blog. So to those of you who have been reading it: Thanks! Even if one reader out there has learned more about diabetes, then we are one person closer to dispelling the myths and making life easier for other diabetics. And I appreciate that.

Keep reading, my friends!

Ups, Downs, and Opinions

Shortly after M switched to Novolog, she also began lacrosse season, which usually requires a couple of weeks of adjustment.

I am pretty sure that the timing could not have been worse.

Having two major changes in lifestyle make the diabetic body, let's just say, unpredictable.

Her blood sugar was a mess. 32! 595! 31! 536! AHHHHHH!

This change and unpredictability sparked a lot of debate and discussion among those of us who were responsible for M's care.

First it was the DNE, who told me that "insulin is insulin", and that any change that was occurring must have to do with her renewed exercise levels. I disagreed, knowing that we have made this change before, and it was never quite this erratic. I did wonder if maybe M was eating food that I didn't know about, but she assured me that she was not.

Then the school nurse decided to chime in. "You need to get that insulin changed back! Ask the insurance company to change it! They will make an exception if there is a reaction that is detrimental to her health!"

The athletic trainer agreed. "It was not this bad before! It must be the insulin!"

I found these forceful declarations unfair.

I was exhausted. I was checking M's bg levels every two hours around the clock. I was stressed. I was tired. I actually became weepy a work. My coworker suggested that I take a mental health day after she asked me how M was doing, and I welled up at the thought of my daughter and her unpredictable results. I wondered daily which child I would be coming home to: the pasty gray-faced child, or the insane cranky child who felt defensive about her test results.

My diabetic students told me to hang in there; that I was doing the right thing. Monitoring bg levels regularly would give me the information that I needed.

M and I decided to give it a month. After two weeks of bi-hourly monitoring, we adjusted her basal rate rather aggressively, up in some places, down in others.

Happily, after about 4 weeks, we are back within our "normal" range.

But let me tell you, having everyone give me, a strung out parent, different advice just about sent me over the edge. I understood each point of view, and they all reflected my own guesses as to what was going on. I felt defensive any time someone felt that they could give me an absolute answer.

There are no absolute answers, no matter who thinks that just one thing will make a person's body go from insane to normal.

I knew in my gut that it had to be a combination of factors.

And while that reasoning and very careful monitoring paid off, I still feel that it would be inappropriate to tell people that they were only partially right.

Saying, "I am smarter than you are," just seems a little rude.

I may even be smarter than this car!

Left out

It happens.

I try to understand that it happens.

I tell myself that I would rather have a person tell me that they are not ready for the responsibility of watching my daughter during a sleepover party, or on a trip to the beach. I tell myself that if they are not able to deal with my daughter having Type 1 diabetes, then I do not want them to be in charge of her care in a situation when I might be out of contact for even a few minutes.

But it hurts.

It hurts me to even ask them.

And even though I understand it, it upsets me that some people are unwilling to take the risk.

She has not been hospitalized, lost consciousness, or flipped out since she was diagnosed. She knows to call me when her bg hits certain levels, just so that I can be part of her action plan for the day. And realistically, she can handle it all herself for a few hours. Odds are, nothing will go wrong.

But you never know.

If she loses consciousness, if she grows unreasonably angry, and the person in charge doesn't know what to do, it's a problem.

M's bg levels had been crazy. All over the place crazy. 595! 33! 578! 41! It didn't stop for days!

And when we finally had two days of it more or less under control, M was to go to a friend's house overnight and then join the family at Anime Boston to honor her friend's birthday.

The plans had been in place for weeks.

M was the only person that her friend invited.

Everyone wanted M to be able to go: M, her friend, me, the friend's mother.

This friend's mother is fantastic. She has traditionally been unafraid to take M for days at a time. But this was unusual. M's bg has only been back under control for a day or two.

I knew I had to make the call, and I hated it.

I explained the situation to the mom. She listened carefully, and asked several good questions.

I told her how much I hated asking her to take M under these circumstances, but I thought it was only fair that she fully understand what she was getting into.

After a few more questions, the mom stated that she would take M. She asked for contact numbers for the entire time she had M, as well as permission to treat letter in case of an emergency. Then she told me that the girls would refrain from the birthday cupcakes that she had planned to share.

I started to protest that M shouldn't be any more of a burden to her than necessary. She said, "No. It is not all right for my daughters to pig out in front of M when she can't enjoy it. We will save the cupcakes for later."

I have a friend who once told me that I can juggle a million things, and I am always in control: until my kids are sick. It unnerves me.

So, at this point I snapped: not in a bad way, but I could feel tears of relief stinging my eyes. My voice was trembling as I thanked her for her kindness, and told her how much I appreciated that she was willing to accommodate my daughter.

And I really did.

Anime peeps. Long story short, a good time was had by all.

No choice

So a few weeks ago I receive a letter from our insurance company.

It states that my daughter is on a medication that is "no longer a preferred medication".  And I think to myself, "Really. The only medication that she uses is insulin. Did you have an alternative for insulin you HMO bastard pieces of shit?" (We actually have a PPO, but I just love that quote.)

Upon further investigation, it seems that Caremark has decided that it no longer wants to work with Humalog (from the Eli Lily company in Indiana), and prefers to work with Novolog (from Novo Nordisk, a company in Denmark). They stated in their letter that failure to switch to the preferred medication may result in loss of coverage for the current medication.

This makes me nervous.

Why? Because the one student I know for sure uses this stuff has very wild swings in blood sugar during the day. His mother and I spoke about different kinds of insulins at a school event. She was touting Novolog as better because it works faster, more like natural insulin.

I thought that maybe we would try it, eventually. Maybe it would work more effectively with M's lifestyle, but we would wait to do it over the summer, if we did try it, so that we could monitor the effects of the change on her system without too much life getting in the way.

But the insurance company threw off my time line.

I asked another diabetic student about which insulin she used. She said that she uses Humalog, and that she had tried Novolog, but after trying it, her doctor wrote her a letter stating that she needed to switch back for medical reasons.

What were the medical reasons?

She wears her pump very discreetly, snaking the tubing from a pocket in her jeans to the infusion set on her thigh. While using Novolog, she said that she was developing divots on her thighs at the infusion site. Her doctor noticed that her muscles were withering where the Novolog entered her system, and successfully appealed the insurance company mandate.

I was a little alarmed.

I brought my concerns to our DNE, who immediately poo-pooed the idea. She had never heard of any of the problems to which I was referring. She told us that "There is no difference between the insulins, and anyone who tells you otherwise is blowing smoke."

After careful consideration, we chose to give Novolog a try without appealing the decisions of the insurance company. We hope that all will go well, and that we won't have to fight for an appeal in the future.

With lacrosse season starting up, I am hopeful that this new medication will interact with M and her lifestyle smoothly.

But I know better.

No adjustment is simple in D-world.

I will be sharpening my swords for battle, just in case.

Please don't make me use this.

Story Time Success

I may have mentioned once or twice that I teach high school.

I love this job.

Kids keep you on your toes, and normal adults are so boringly well-behaved.

I have a Spanish 1 class late in the day. This week we were learning "la mochila" (the backpack). In preparation for the lesson, I had packed one of M's backpacks with some typical and not so typical items that one might find in a high-schooler's backpack: el lápiz, el bolígrafo, el cuaderno, la carpeta, etc. The kids would guess what was in the backpack in English, and I would look inside to see if the item was in there. If it was, I would remove it, set it on the marker tray (what used to be a chalk tray), and label it.

Included in my backpack was ¨el libro¨ . When a student guessed that there might be a book in my backpack, I reached in and pulled out the book I am currently carrying around: Think like a Pancreas.

One of my students could probably have moved on to Spanish 2, but was a little shaky and ended up taking Spanish 1. He does a lot of doodling in his notebook as a result. At the end of class, he handed me a story that he wrote when he should have been copying the vocabulary into his notebook.

The Pancreas That Wanted To

             Once upon a time there was a little girl. Her name was Victoriabby-Devon-Charlie-the great. But they called her Devon for short. She had diabetes. She was very sick from it, and all of a sudden the pancreas didn't work. So she has to take insulin, because her pancreas couldn't. Devon went to the doctors and the doctor said "your pancreas is being silly" to her. All of a sudden her pancreas woke up, like sleeping beauty. It didn't like being called silly, so it wanted to produce insulin but couldn't. When Devon went to the drs. to get more insulin, but her pancreas only wanted its own type of insulin, so it tried and tried, and some just came out! The insulin from the doctors mixed with the real insulin from the pancreas, and the mixture caused a reaction, and the reaction got rid of diabetes forever. Then, Victoriabby-Devon-Charly-the-great lived happily ever after.

                                                                       THE END

I promise you that this is exactly what he wrote. I had to work very hard not to edit it.

All of my students know that M has diabetes. I try to give the kids a rudimentary understanding of what it means to have diabetes. When I read this unassigned piece of written literature, I thought that it showed some tiny level of success.

Not because this fourteen-year-old could construct flawless sentences, and not because he got all of his facts straight.

I felt success because he knew what a pancreas was. He knew what insulin was. And he understands the dream of a diabetic is for a quick cure.

Now if only M's pancreas would grow tired of being called silly. THEN we might see some results!

Glimmers of Maturity

M went to the Winter Weekend last week.

This program is especially for teens with diabetes. This year about 35 kids with diabetes spent the weekend in Vermont playing games, doing ropes courses, having a dance, and listening to adults with diabetes explain how they manage their disease.

There was a power lifter. There was a triathlete.

M reunited with some of her friends from summer camp, and also met some new ones.

Of course she had a good time. She's M. She loves people and new experiences.

Flash back to camp time: I pick up the flier about the Winter Weekend and ask M if she'd like to go. She shakes her head in distaste. "No, I am just not into that."

I signed her up anyway.

I am thinking that she seems to burn out on having diabetes every few months, and that this might be a chance for her to recharge her diabetic-management batteries.

Needless to say, I am smugly congratulating myself on being right about that one. She thanked me repeatedly on the way home.

At pick up time, there was a parent meeting, in which we heard about the kids' weekend as well as what resources are out there for parents and children with diabetes.

There was one program that caught my eye, but I didn't think that M would go for it. It is a program called STAR: Steps Toward Adult Responsibility. The program matches teens with mentors who are managing chronic illnesses in college. The illness does not have to be diabetes, but includes chron's disease, celiac, and other ailments that do not go away. As I listened to the college student in charge of the program, I thought I might talk to M about about checking it out in the car ride home.

The ride home was fun. M told me some stories, shared what the speakers were saying, and how it affected her. Then she mentioned the STAR program, and told me that she had signed up to be on their e-mail list, and can we start going to their monthly meetings?

I drove on, amazed as my daughter explained that she thinks that she needs support more than every six months, and that she thinks the program will really help her stay on track and keep a positive attitude.

Will wonders never cease?

But, just so you know that M is still M, she is begging us to buy her some girl scout cookies this year.

Because they are yummy.

Dangerous and Unintended Consequences

It all started Friday evening, as I was reading the headlines to my husband, Bill. A little article on the front page of the Concord Monitor caught my eye. "New guidlines to prevent distracted driving".

It seems that our U.S. Transporation Secretary, Ray LaHood, has released new federal guidelines for automakers to help prevent distracted driving. He recommends that manufacturers create a device that will block cell phones from working in the car while the wheels are in motion.

Then Mr. LaHood went on to say that the guidelines might be extended to "all portable electronic devices that might find their way into a car."

I told Bill that to me, a "Live Free or Die" New Hampshirite, this seems ridiculous. After all, I don't text or talk on the cell phone while driving, but sometimes I have my children make a call to our destination while I am driving, and they are safely in one of the passenger seats. "Honey, call Grandma and let her know we should be there after lunch" never seemed to threaten our safety as a family on the move.

And while my kids don't have Gameboys or DVD players,I see no problem with letting kids play games on electronic devices while in a car. I thought about how the government tried to force car manufacturers to make seatbelts that belt people in whether they wanted to be or not (remember those cars with the moving seatbelts that hummed into place when you turned the key?).

I supposed out loud that the manufacturing guidelines might be effective, but that going to extreme of blocking all devices seemed silly.

"Don't you think M should be able to text a friend while I am driving?"

Then Bill said, "I wouldn't worry about the texting. I would worry about her insulin pump."

Oh.....

The insulin pump.

That thing that keeps my daughter alive. The portable thing that electronically delivers life-giving insulin to her body. The device that communicates with her glucometer to determine how much insulin she she administer when she eats.

That thing.

She will be driving soon.

If we have a car in which her insulin pump is disabled, she could kill someone, cause a serious accident, or die. If she is in a friend's car with the proposed technology, she could have a medical emergency for which her friend is unprepared. (Talk about distracted driving!)


This is not alarmist "someone could hack into my pump" bologna. After all, hacking into someone's insulin pump would be the least efficient form of terrorism ever.

But this.

This is a genuine hazard.

The thing is, infusion pumps are not only for people on insulin. Some are used for pain medication, or medicine to assist in healing spinal cord injuries. What if these infusion sets are disabled?

Any car that M entered might disable her pump if these guidelines are implemented. And those who have learned to manage their chronic, life-threatening illnesses, might just have to do without.

It is time to act. I am contacting my congressional representatives.

I would appreciate it if you did the same, before the unintended consequences of these guidelines become a reality.

Like brushing your teeth

I am feeling like a bad mother again. I sometimes feel like I can't do what I need to do to get M to independently follow her diabetes regimen. I mean, I have to get her to do this independently BEFORE she heads off to college in a few years, right? I can't be her helicopter mom for all eternity, can I? It goes against all of my Montessori training.

I am reading a book suggested by Jaqui, Think Like a Pancreas (God, how I miss reading fiction!). The author mentioned that to maintain tight bg control, one must test his bg at least four times per day.

Now I know this, and we ask M to do it, ask her what her bg levels were at breakfast, lunch, after school, etc. We think that she should test her bg at least 5 times per day, and we try to be sure that she does it.

But something about the way it was phrased in the book made me look over at the meter that M had left on the dining room table, and check her last 5 bg test results. I mean, she had already told me that her bg was 196 at breakfast and 209 at lunch. I had just had her check it at dinner, and it was 67, which I saw for myself.

Of course, any reader of this blog is unlikely to be surprised that I discovered that the 67 was the only time that M had checked her bg in the last 24 hours.

I shared my new found knowledge with Bill. He took off his glasses, sighed, and asked which one of us should talk to her about it. It was clear that neither of us did. When confronted with her own lack of discipline in this area, M tends to get ugly. High-pitched whining and angry spitting are common. Less common, but also to be anticipated, are the spinning head and the pea-soup vomit.

Rock smashed scissors and off I went to the lair of the diabetic beast.

Producing the meter, I asked M in a gentle voice why she thinks she should make up bg numbers (The voice really was gentle, I am not being sarcastic).

Her response: "I don't know. It's just easier."

Clearly my darling is a short-term thinker. Instant gratification is the name of the game, and if "I don't think about it now, it might just go away."

Except it doesn't.

I tell her that we try allowing her more independence, and try not bugging her about her diabetes all the time. We try to allow her to step up and take care of herself, but she hasn't once demonstrated the success level that would make us comfortable. I tell her that I really need her to be trained to care for herself properly, so that she will stay healthy when she goes off to college in the future. Then I ask her how we can do that.

Remembering how long it took her to brush her teeth on a regular basis, I asked if we would need to check her meter every night and sit on her for the next two years until it became a habit. I was half joking, but her answer surprised me.

"I don't know. Maybe."

Then she told me that she was really sorry that she was worrying us, and that she means to check her bg, but she just forgets. She really means it. And I know it.

I know that she is not doing this to upset us. I know that she just forgets.

I think that's what worries me the most.

So, for now, we will check her meter at 8:00 pm every night for the next two years. And hopefully testing her bg will go the way of brushing her teeth, and become a real habit.

After this, I will do everything in my power to control by bg levels!

Result 77

So, I checked my blood sugar the other day with one of M's old meters (not the one connected to her insulin pump).

I had never done it before.

Here is what I learned:

1) Those lancets sting like nobody's business, and the holes they make in your finger sting for a while after you think they should be over it by now. I've had bad paper cuts that have stopped hurting before these pricked holes did.

2) Squeezing out enough blood to satisfy your thirsty test strip takes talent. I had to make four, FOUR different holes in my finger and throw away two test strips before I could finally get a reading.

3) Even though the holes won't bleed enough to give you enough blood before the test strip times out, it won't stop bleeding for a couple of minutes. M simply licks her finger and wipes it on her jeans after a stabbing. I don't know what she does if it keeps bleeding, but I found myself sucking on my finger for a few minutes to both alleviate the sting and avoid having to put on a Band Aid.

4) The sides of your fingers are your preferred target for a lancing, because it won't interfere with the use of your finger pads. After all, we type, dial, text, and play instruments with those fingers. If they sting, it will make life a little less convenient. But the problem is that the pad is the easiest place from which to procure blood.

5) If your lancing hole isn't deep enough, no amount of squeezing and rolling your skin around will force out the appropriate amount of blood in time.

6) Get your big drop of blood out and sitting on your finger before inserting the test strip. Then there is not stress about timing.

7) I have a deeper respect for my daughter, who has clearly mastered this skill and endures the discomfort 5-7 times per day in order to better maintain her health. She almost never gets error messages on her meter! When she has trouble squeezing out blood, I will endeavor to be more patient, even if we are waiting for critical information from her meter.

I feel like a complete wimp.

Even so, like any parent of a child with diabetes, I would trade places with her if I could.

You look deceivingly small, but you don't fool me any more!

Not that, mom!

M has a problem with her pants (trousers for you Brits).

She likes to wear skinny jeans and pants with funky pockets on the side of the leg.

While this might not be a problem for most teens, neither of these styles is conducive to carrying an insulin pump.

But M tries anyway.

So about three times a week I hear that hissing "Ouch" that many of us use when we break our nails or stub our toes: the "ouch" that lets me know that the pump has fallen from a pocket and is now dangling from her infusion site. If I hear an accompanying "thud" then I know that the infusion set has been ripped out of her skin and is now delivering insulin to my floor.

Her clip broke, so she can't simply clip the pump to her pants. I recommended that she tuck it in her underwear, her bra, anything that might hold it securely into position.

She says it looks stupid and/or is uncomfortable.

So, instead of ordering a new clip like a normal mother, I take a look at tummietoes, which have been mentioned by multiple D-bloggers as great solutions for pump storage when exercising or going out in fancy clothes.

I mention tummietotes to M, and am immediately reminded of an episode of The Simpsons in which the whole family visits an IKEA-like store. In the episode, Marge offers to buy Lisa a new pencil holder called a Pupli (with two dots over the "u"). Lisa looks at her mother and says, "Mom! Not a Pupli! Even I make fun of the Pupli kids!"

M informs me that really only the dorky girls wear the tummietotes at D-camp.

I point out that if she wears it under her clothes, no one will even know that she is wearing it. And it is comfortable and convenient

M indicates that I just don't get it.

I look at the website again. And you know what, they do look dorky. But I don't care. They are available in black and white and other colors suitable for under the clothes. And they are supposed to be comfortable.

I make M look.

She relents.

"All right, Mom. If you want to spend your money on that, I will try it."

Victory!

Now if I can just scrape up the $25.....