Thursday, December 29, 2011

Rocking chairs

I first became aware of my new perspective when the Chilean coal miners were trapped below the surface in 2010. I was impressed by their fortitude. I was impressed by their hope. And I was impressed by their will to survive.

Then I heard that at least one of the miners was diabetic.

The D-mom in my brain started shrieking, "How is he going to properly manage his disease? Will he survive? Will he die? How did he survive the 17 days without any insulin at all? Does he carry insulin with him to work?"

I came upon this realization: I am D-Mom to the world.

Not only do I worry about my own little pumpkin, but I worry about all of the little diabetic pumpkins out there in the world. When disaster strikes, who is going to take care of them? Who is going to make sure, that in the event of an earthquake or a tsunami, that these people will get the life-giving insulin that they need?

Now barring any level of independent wealth, I am not sure I can do anything about this problem, except worry.

Worry is like a rocking chair--it gives you something to do but it doesn't get you anywhere.”  - Anonymous

So, whenever there is an earthquake, tsunami, nuclear disaster, flood or tornado in the news, you can bet that I am rocking in my rocking chair, wondering, "Is everyone okay?" and "Who is looking out for the diabetics?"




Diabetic pumpkins on the brain...



Wednesday, December 28, 2011

10 minutes vs 14 hours

One of the frustrating things about parenting a teen with diabetes is that teens seem to think that they can tell diabetes what to do. (I once had a diabetic student tell me, "I am invincible!")

Of course ordering diabetes to behave a certain way will never work; but sharing this fact with my teen only makes her angry, and it certainly doesn't stop her from trying to boss diabetes around.

A couple of weeks ago, M and I decided to go to her school's production of Footloose (an on stage musical). I wanted to see it in order to be a supportive regional high school parent. I also knew that one of M's friends was in the production, and that M wanted to show her friend support.

After going to work the morning of the play, It occurred to me that M might not want to sit in her high school auditorium with her decidedly uncool mom, while her friends were all there alone, being cool, and hanging out.

So I told her that she could invite a friend.

One thing led to another. Her friend and her friend's brother came over for dinner before the four of us took off for the play. Nice kids. Good conversation. None of which was about diabetes.

As advised by several parents, we arrived very early, snagging good seats - but not together. That would be uncool.

I seated myself with another abandoned mother and enjoyed the show. M periodically waved at me, and even purchased a bottle of water for me during intermission.

After the play, we dropped off her friends, and arrived home.

I asked M to check her bg. I knew that she had had a Reese's Peanut Butter Cup, and it was 10:00 pm. I wanted to make sure she went to bed on the right track.

This is when she said, "Mom, don't freak out. I know it's going to be high."

"Well, how do you know that?"

"Well, my pump was yelling at me that it was out of insulin about halfway through the play."

I was concerned. Normally the pump gives you a "low reservoir" warning buzz before it runs out.

I expressed my concern that the pump might be malfunctioning.

M explained that she DID get the warning buzz. During dinner. Before we left the house.

While I surmised that perhaps she should have taken care of it before we left, M checked her bg.

It was 512 mg/dl.

She changed the infusion set, and bolused.

We then had a conversation, broken up into 20 minute intervals, (the frequency with which we checked her bg), in which she explained that she didn't want to make her friends wait while she changed her infusion set before we left. That it was "just annoying", and that we might have arrived late.  (489. Bolus) She thought that she probably had enough insulin to get her through the show, even though we had had pasta for dinner (476. Bolus). And yes, she had the Reese's cup even after the insulin had run out, because she didn't think it would go up this high (479. This isn't coming down as fast as it should! Injection). Now can she please go to bed? She is so tired.

Well, she can, I explain, if she wants me to wake her up every 20 minutes.

At this point, M started to cry. Through her tears, she angrily spat these words: "I just want to sleep!"

She was furious with me. Unfair, considering that I didn't get her into this mess, but hormones, diabetes, and being tired are unlikely to make a young person rational. I explained to her that I couldn't go to bed myself until her bg was in the 200 range. We needed to get it under control. (452. Bolus)

Finally, at 12:20 am, M's bg was 274. I allowed her to go to bed, with the promise that I would wake her up in two hours to make sure we were on the right track.

At 2:30am, her bg was 62. A little too low. We fed her two rolls of Smarties and checked again in 10 minutes. It was 89.

I went to bed, so that I could get up at 4:30 am to check again. Bg was 52. Feed two rolls of Smarties. Back to bed. Daddy checks bg at 5:30 am. 64. Time to get up and eat breakfast.

By noon, after 14 hours of near-constant monitoring, and very angry glares and comments by my number one teen, everything settles back into normal range.

I tried very hard not to point out to M that if she had taken 10 minutes to change her infusion set before the play, that we could all have come home and gone right to sleep, and nobody would be angry with anybody.

In fact, I didn't give her that lecture, because I was actually angry with her. Really angry. And I was afraid that my sympathy and understanding had completely left me. A calm and rational discourse was elusive, if not impossible.

What I did say was this: "NOTHING is more important to me than you being healthy. No matter how inconvenient it might seem, your HEALTH always comes first."

She nodded.

But I am somehow sure that this is not the last time I will be saying these words to her.

Sigh.

Teenagers are hard.

I HATE you! Let me go to bed NOW! I've got it under control!





Tuesday, December 27, 2011

Brittle

I learned a new diabetic term recently.

I am always sorry to hear that there are more diabetic terms that I have not heard before. To me, that means that there are things I don't know, might never know, or might not ever want to know about diabetes.

The term I learned is "brittle diabetic".

A brittle diabetic is one whose blood sugars are especially difficult to control.

I have often wondered about this.

It seems that, so far, M's blood sugars are usually somewhat predictable. Not always, but usually if we have a really high or really low number there is some rhyme or reason to it. And it's usually something that we can figure out, as long as M is cooperative and truthful during the figuring process.

But I had noticed that some of my students seemed to have a greater number of highs than she. That the highs seemed far more unpredictable than hers.

Of course, being a smug diabetic mom, I at first thought that perhaps my students were just not as good at managing their diabetes as my little angel.

But it does seem to me that some people just have better luck than others.

Then I read about Miranda. Miranda was a young woman who died from complications from Type 1 diabetes.

My mother made the acquaintance of Miranda's mother through work. Of course they went through that weirdly comforting "You too?" of diabetes connectedness, and then Miranda's mom shared a book that she had written about her daughter's painful journey through diabetes. In it, the book discusses the fact that Miranda was a "brittle diabetic."

Oddly, the book says that Miranda found the diagnosis liberating: she realized that her crazy bg levels were not her fault.

In life, I have often told myself that it could be worse. That someone out there has it worse than I do. It is both horrifying and comforting. It also helps me to pull myself up, realizing that there are people out there with way bigger problems who not only survive, but find joy in every day.

I know that I am not the only one who functions in this way.

Once I went swimming at the house of a friend of a friend. She and I had both, long ago, suffered second-trimester miscarriages (also known as still births). With years between our shared experience and the day of our discussion, we talked about how we felt at the time.

I said that I always felt lucky, because I had not had a child before the miscarriage, and I really didn't know what a true loss it was: something I would have surely known if I had experienced childbirth previously.

My companion looked me right in the eye and said, "Now isn't that weird. I felt lucky that at least I had had a child before, and that the loss would have been greater if I hadn't."

So, while I am saddened, and often exhausted by living with Type 1. While I fear, on some level, for my daughter's life every day, I have to count my blessings yet again.

She's not brittle.

My baby is strong.

Just keep moving. It will get better!



Tuesday, December 6, 2011

The rule of small numbers

When M was diagnosed, her teacher gave her a very useful gift.

It is a book entitled Dr. Bernestein's Diabetes Solution, which was written by a doctor who is, himself, a diabetic. In the book are many interesting anecdotal stories regarding growing up as a diabetic over the years. Some of the stories involve boiling syringes, using daily urine tests, and general health inconveniences. The man became a doctor in order to learn more about managing diabetes well, and having the authority to teach people to manage their diabetes well. He claims that he has patients whose myopathy, retinopathy, etc, have actually REVERSED after learning to manage their diabetes using his methods.

One item that he brought up in his book is the "rule of small numbers". I am not sure if Dr. Bernstein is the first to call it such, but it seems to make sense, and it taught me a lot.

First of all, did you know that the FDA labels need to meet a certain accuracy level? I am sure you assumed that was the case. I know I did. What I didn't know, is that nutrition labels are permitted to be off by up to 20% and still meet FDA standards.

I really don't have that big a problem with this: food is a messy business. However, for people who rely on accurate nutritional information, labels can be disappointingly inaccurate.

Diabetics who are dependent on insulin use what they call a "carb ratio" to calculate how many units of insulin to give themselves when they eat. M's current carb ratio is 7. That means that for every 7 carbs M eats, she must give herself a unit of insulin. If M gives herself a unit of insulin without eating, it generally brings her bg down about 20 points (mg/dl).

The good doctor, therefore, recommends that diabetics stick to low carb food for accuracy purposes. Since the margin of error in food is 20%, a food whose label claims that it has 10 carbs in it may actually have somewhere between 8 to 12 carbs. The amount of insulin that covers 8 to 12 carbs does not vary that much; in M's case, it's about a half unit of insulin. If she gives herself 20% too much, her bg will be about 5 mg/dl less than the ideal. If doesn't give herself enough, her bg will be about 5 mg/dl higher than ideal. 5 mg/dl off is no big deal at all.

However, if a food claims to have 60 carbs in it, then the actual number of carbs in the food can range from 48 to 72 carbs, which can make a big difference in the amount of insulin you give yourself to cover it. Let's see: If she gives herself 20% too much insulin, her bg will be 40 mg/dl lower than ideal, which brings her into dangerous territory. If she gives herself 20% less than she needs her bg will be 40 mg/dl higher than ideal.

M's target bg - the one we shoot for every day- is 120.

In reality, we are very happy if it's between 85-145. Because she is a teen, and because some foods don't have labels, or portions are over estimated, underestimated, and because of other factors like exercise or lack thereof, most days it goes over 200 at least once. Nearly every day it drops below 70 at one point.

We notice that when M eats steak and salad, and minimizes bread, her bgs are much better under control. During the holidays, when the house is full of carb-loaded sugar-filled nutritionless crap, her bgs need to be monitored much more closely.

While many low-carb foods are delicious, sometimes a kid just wants a bagel, which we then pay for in extra test-strip usage and monitoring, or, alternately, higher bgs.

The argument in the DOC has been that, while "the rule of small numbers" seems to make logical sense, it doesn't always work.

I think it is true, but brittle diabetics and diabetics with other factors such as unrelated illness, medications, etc. might not be able to rely even on something as seemingly straightforward as the rule.

Currently, we use the rule as a guideline in determining a balance in food. For example, M is smart enough to realize that eating a large Blizzard from Dairy Queen  (at a labeled 160-190 carbs, depending on flavor) or a slice of cake is not only not worth it to her, but it can also be dangerous. But she knows that if she wants a big slice of Italian bread, she best eat it with a steak and salad so that her total meal is less than 70 carbs.

Verdict: I like the rule of small numbers, but while M is off at school, with high carb quick lunches and hot lunches, sticking to the rule can be a challenge. Let's hope she makes good food choices when she is out of sight.



Here's a small number. I'm pretty sure I can cover for that.



Sunday, November 27, 2011

Eating disorder

There has been some discussion on the interwebs about diabetes and eating disorders.

Now here's something I hadn't thought about, or worried about enough, evidently.

I first came across the topic after Joanne had posted her fabulous video, "What not to say to the parent of a Type 1 diabetic". In the video, she mentions Halle Berry. Saying that if Halle Berry can cure herself, why can't the protagonist's daughter?

The response? "Halle Berry is Catwoman. My daughter is not Catwoman."

This prompted me to research the topic of Halle Berry and diabetes, because I had never heard anything about it before.

Wow! Was I out of the loop!

It seems that Halle Berry had been diagnosed with Type 1 diabetes, and declared on a national talk show that she had "cured" herself, and now has what she likes to call "Type 2" diabetes, because she can control it with diet and exercise.

Well, I've got news for you: Halle Berry didn't cure herself, (There is no cure for diabetes. You can only manage it.) nor did she convert herself into a different type of diabetic (The difference is not in the use of insulin, nor in the age of the patient during diagnosis). As a diabetic, she should know the difference between the two.


I mentioned that when M was diagnosed, she had lost 20 pounds in three weeks. My daughter was starving to death because her body could not process that food entering her body. In fact, she was not only starving to death, but her body was being poisoned by the food she ate.

If not for insulin, my daughter could have looked like this early recipient of insulin:

courtesy of http://www.diabetesindia.com/diabetes/diabetes_insulin5.htm(same child, before and after experimental insulin treatment in the early 1900's)








and eventually would have died after a few months, maybe a year if she didn't eat much.

Which leads me to this idea about eating disorders.

During my "Halle Berry research phase," I read a blog that suggested that Ms. Berry might be deliberately keeping her bg high, at risk to her own health, in order to stay slender. Knowing what I know about diabetes and weight loss, I could see why someone might jump to that conclusion, but I said "pshaw" to the idea, thinking that a celebrity with a gajillion dollars and some determination might find just the right diet and exercise combination to keep her bg levels in range.

Not "cure" herself. But control her diabetes.

Fast forward to mid-November of this year, when I received a catalog from the ADA.

This time of year they sell things like Christmas cards and ornaments at a high price, a portion of which goes to diabetes research. The catalog is full of items to purchase as well as inspirational or frightening articles about diabetes.

I was surprised to see an article in the catalog  about diabetes and eating disorders. It told the stories of some young women who were risking their long-term health in order to stay slim. They fully acknowledged that they did it. They knew that they shouldn't. But apparently they didn't think that what they were doing qualified as an eating disorder.

So, if this is a bonafide problem in the Diabetic Community, maybe the suspicion about Ms. Berry had some merit.

On the other hand, maybe she was misdiagnosed.

So great.

As the mother of a teenager - a daughter- with diabetes, who clearly doesn't have enough for which to be watching out, I now have to stay alert for signs of an eating disorder in my kid.

The signs and symptoms are the same as for other eating disorders.

As a high school teacher, I am familiar with them all.

I want to end by saying that I am hopeful that my pragmatic daughter will be wise enough not to get caught up in the pursuit of perfection through extreme body management.

But I will indeed keep my eyes open.

Thought I'd end with a healthy-looking image.





HIGH school

Not all of my diabetes excitement comes from having my own offspring afflicted with diabetes.

Teaching high school, I have other young ones for whom I am responsible, and at times, they have diabetes. When working with these students, I feel grateful for my knowledge and experience with the disease, although I wouldn't have minded acquiring the knowledge in some other way.

One of these students is in the school's Spanish Honor Society. He has had Type 1 diabetes since he was three years old. I have had several conversations with his parents about the experience of having such a young child with Type 1, and boy, do I not envy them.

Last week we were holding a meeting of the club, for which I am an advisor. During the meeting, the young man checked his bg levels, which were just over 300. After checking his bg, he left the room huriedly.

The students in the room knew how this could go. One of them asked me, "Did he go to throw up?"

I didn't know, but I knew that he needed to get his bg down soon.

Often when he is nauseous, this student needs some water, so I left the room to get a couple of cups of water for him for when he returned.

When he did return, he said, "Sweet. Water." and downed the two cups.

I asked him if he had bolused.

He said he had over an hour ago, and since his bg hadn't dropped since then, he had better go home.

Alarm bells went off in my head: I knew this kid had recently acquired his driver's license, a must for teens in rural areas like the one in which I teach.

"How will you get home?" I asked.

"Drive," he said.

"Oh no, you don't," I said. "Let me call the nurse to see if she is still here. If we can't get your bg down, I will drive you home."

The student explained that he thought that when he inserted his infusion set, it might not have installed properly, so he might need to change it.

"Do you have a spare one?" I asked.

"Not on me," he said.

The nurse wasn't at the school (after all, it was about an hour after school was over), but the student went to the main office to have someone unlock the door to his diabetic supplies, so that he could access his spare infusion sets. Then he returned to the classroom.

He was a little wound up. He sat on one of the desks and removed his infusion set. I peppered him with questions about how long it typically takes for his body to respond to the insulin, and whether he had a syringe, just in case. While he answered my questions, he unwrapped the infusion set and lifted his shirt, pinching the skin on his belly.

At this point the club president said, "Oh my God, are you going to do that NOW?"

I think he and I both gave her the same look, because she made some apologetic noises and discreetly turned her head to talk with a friend.

While he put in the infusion set, we set the timer on the computer for him to check his bg again in 15 minutes. Then I made him promise to check it one last time before he left.

Needless to say, our meeting about planning a day trip to NYC was thrown way off topic. By this time it was nearly one and a half hours after school ended. The meeting was adjourned, and the kids went home.

I left the school with a number of things on my mind. My diabetic student, evidently, was not one of them. About halfway home, I realized that I never did have him check with me before he got in the car to drive away. Just like M, he probably never gave it another thought, thinking he was perfectly all right, and that he could handle it, even if his bg was too high.

After my half-hour commute, I made the phone call.

He answered the phone, obviously having made it home safely.

I told him who it was and that I just wanted to make sure he was okay. He immediately apologized for worrying me; it had slipped his mind.

He's a really nice kid.

But I am glad that I only have one of these at home.


No such luck. Maybe next time, kid.


Friday, November 25, 2011

Reboot

Things have been going well, diabetically speaking. M has finished her field hockey season and was designated MVP of her team. Now she is living a more sedentary life. Her grades are going up, as are her blood sugars.

Higher blood glucose readings are to be expected. After all, exercise keeps bg down. Remove the daily 2 mile runs and 1 hour practices, and the bg will go up. So, although it is a bit of a bummer, it is not an unexpected one.

About two weeks after her last game, we noticed M's bgs creeping upward. We adjusted her basal rate by 0.25 units per hour over all.

Her pump had been delivering a steady stream of 3.0 units of insulin per hour at night, and 3.25 units per hour during the day. The basal rate, in theory, is the part that will keep her bg within range when she is not eating. Anything she gives herself when she eats is considered a bolus.

So now she was up to 3.25 at night, and 3.5 during the day, but we did have to make another adjustment about a week later. It seemed we had found the magic numbers. She was healthy, and her numbers seemed to be doing well.

On the Wednesday before Thanksgiving, we drove to pick up big brother at the airport. Since I was not driving, I though I would ask to see M's meter so that I could see how she had been doing the last few days.

She pulled the meter out.

She paused.

She started flipping through her numbers.

This is when I knew that something was up.

"You know, M, " I said casually, "I can read the meter all by myself. Just hand it up."

Long pause. Frantic pushing of buttons.

"M, hand it up," I repeated.

"There's something I have to tell you, " M said.

"Here it comes," I thought.

"Some of my numbers are missing, because I have been forgetting my meter when I go to school. So if you see any missing numbers, it's because I used my other meter at school."

When I collected the meter, I flipped through the numbers for the day. Except that there was only ONE number for the day. In fact, it was the only number for TWO days. She had only checked her bg on that meter six times since October 30th.

Here we go again.

"M," I said, "You told me that your bg was 131 this morning. That number is not here. Did you run to school and use the meter there to check it?"

No answer.

Rather than give her "buck up" speech, I said this.

"All right. starting today you will be checking your bg six times per day, and I will need to see it."

And that was all.

I was worried. I was furious. But yelling was not going to cut it. And neither was telling her that she was putting her life in danger.

So yesterday and today: six times, and I see them all.

Which is great because I can monitor her.

Which is not great, because how is she going to be responsible enough to do it herself? Ever?

I don't know.

But we will need to figure it out.

Not shocked this time!

Wednesday, November 16, 2011

Just annoying

I feel, sometimes, like I must be a bad mother.

A good mother would never feel like her kid was just another thing she had to worry about before going to bed, would she?

We had a great dog for a long time. But sometimes, I would want to go right to bed after our family finished watching a movie. I wouldn't want to wash my face, or brush my teeth, or let out the dog.

But I knew that if I didn't let the dog out, I would have to clean a little puddle off of the floor, or that she would wake me two hours before I wanted to get up so that she could access the great outdoors to meet her needs.

So I would begrudgingly let the dog out before collapsing into bed. I would still skip the teeth and the face, just to mollify myself.

I will not say that I felt guilty about feeling resentful that the dog had to use the bathroom. I didn't. My dog loved me unconditionally, and she never sensed that I was feeling whiny about this particular chore.

Unfortunately, I occasionally have similar scenarios with my diabetic daughter. And I wonder if she picks up on my internal whine-o-meter.

Case in point: Around dinner time yesterday, M checked her bg.

It was 207 mg/dl: not outrageously high, but not in the range we are generally looking for.

After finishing dinner, doing our homework, and watching some television, we all went to bed.

I crawled under the covers with my beloved and warm husband. I snuggled my face into the pillow and began the quiet process of unwinding the day in my head.

That's when it hit me: I should have had M check her bg again before going to bed.

I lay there, without moving from my very comfortable position, wondering if I really had to get up. After all, I reasoned, a bg of 207 was unlikely to get outrageously high. There would be no immediate, serious consequences. Probably.

On the other hand, what if it did climb a lot higher? Then my daughter would feel crummy, she might not sleep, her day at school would be shot, and, worst of all, her long-term health would have another ding in it.

I lay there debating.

Whining internally.

I tried to pretend that I hadn't remembered that she needed to check her bg one more time.

It didn't work.

Sighing, I tossed the covers aside, and fumbled my way to the dining room. I grabbed M's purse, and brought it upstairs to her so that she could check her bg.

She seemed unsurprised to see me.

With absolutely no fanfare, she pricked her finger with the lancet, and squeezed a droplet of blood onto the test strip. 5... 4...3... 2... 1.

It was 274, so M ordered her pump to deliver the appropriate dose of insulin.

End of story.

Instead of being pleased that we prevented a potential night-time high, I had only one thought.

"Finally. 

Now I can get some sleep."

Bad mother.

Bad, bad, mother.

But it really is annoying!

Saturday, November 12, 2011

Fair

Life isn't always fair.

But sometimes you get to attend a fair.

How you feel about attending a fair can depend on both the circumstances, and those you meet.

Due to the hours I have spent typing away at this keyboard,  I was asked by a childhood friend if I would like to come work at her church's "Joyful Giving Fair".

"What," you might ask, "is a Joyful Giving Fair?" It turns out that it is like many Holiday Fairs around New England, except with a twist.

Many of the churches in New England have a Christmas Fair to raise money for the church and its good deeds: their food pantry, their fuel assistance, etc. This church holds a fair where each table is covered by volunteers from a charity organization, and every dollar you spend at the table goes directly to that organization.

As we are trying to help raise money for diabetes awareness and research, M and I thought that we could dedicate some time to this kind of work, so we said that we'd do it.

As one of the organizers, my friend seemed disproportionately enthusiastic about our participation. We didn't feel like we were doing her that big a favor! We were glad to help out my friend and JDRF at the same time.

But how would we do it? It somehow seemed inappropriate to sell baked goods to raise money for an organization that lets people know to count their carbs for better disease management. Furthermore, we are not especially crafty. What could we do?

Having absolutely no inspiration about how to raise money for diabetes, I contacted our local "special events coordinator" at JDRF.

Dear _____,

My daughter, M has type 1, and we sponsored a walking team this year. Because I talk about Type 1 so often, an acquaintance invited me and M to participate in her church's "Joyful Giving" fair.

I told them that M and I would participate, but I have no clue what we should do. Are there items that we could sell on behalf of JDRF? Flyers we can hand out? Ideas that you can share with me?

I would like to raise money and awareness of the organization, but I am not sure if there is a protocol that I must follow with JDRF.

Please advise. The fair is in a month.

Thank you,

Me


Unfortunately, the response was a little less than I had hoped for. It boiled down to: "We have bracelets that you can buy from us and then sell. Or we can send those paper sneakers that we sell for a dollar at the supermarkets. Otherwise, good luck!"

I suppose this might be one of the reasons that JDRF is so highly ranked as a charity. There is no overhead for things like mugs, or t-shirts, or anything else that might be sold at a Joyful Giving fair.

So M and I tried to wing it. We had the paper sneakers sent, and converted them to tree ornaments by punching holes in them and tying ribbons to them.

My mother also propagated some plants for us to sell - a big hit at our own church fair.

We set up, and everyone was kind to us. After 5 hours of talking to people, smiling, and explaining what an insulin pump is, we cleared $41. It would have been $21, except that my mother stopped by and gave us a $20 bill to show her support. (Thanks, Mom!)

All was not lost, however.

The highlight of our day arrived around noon in the form of an elderly woman who visited our table. Before I could dive into our spiel about JDRF and its good works, she told us that she had been diagnosed with type 1 66 years ago.

She was ten years old at the time.

She told us that she participated in basketball and cheerleading when she was M's age. She told M that she looked healthy and to keep up the good work. The she shared an oft-repeated slogan: "It's all in the attitude!"

At 76, I have to say, this lady looked pretty good. She said that she still uses Lantus and Humalog with the disposable syringes, and that they work just fine, thank-you-very-much.

She was a delight. And a testament to the effect a positive attitude can have on those with a chronic illness.

When she left our table, M said: "That just made my day. Just saying."

We grinned a lot that afternoon. And why not?

JDRF will have $41 more in its coffers. And we had our inspirational coffers refilled, free of charge.

Very cool.
Cashing in for JDRF.

Tuesday, November 8, 2011

Pizza

Fact: If you want teens to participate in any kind of extra effort, be it volunteering, doing an extra credit project, or whatever, it is easiest to get them to participate with the promise of food.

Fact: Teens are hungry, hungry people with seemingly bottomless stomachs.

Fact: Feeding more than one teen can get expensive.

Fact: Satisfying the tastes of several different teens can be a challenge.

Fact: Anticipating the serving size one must allot per teen can be tricky.

Solution: Order pizza!

It is cheap, comes divided into manageable portions, and has a flavor to match just about every taste!

But.

But, it is super high in carbs.

M has never been concerned with pizza in the same manner that she has been with cake, but it still takes a lot of skill and luck for her to keep her bg in range for several hours after consuming even one small piece (defined here as a one-inch wide slice of a 12 inch pizza).

The tricky part is that it doesn't seem to behave in a consistent manner. Cutting back the "dose" of pizza doesn't lessen the wacky impact it has. Adding more insulin seems to make no difference either.

So what is a mom to do? Neither M nor I find the option of making a stink about the lack of food choices to be a viable option.  Especially when the food is really only provided as a courtesy, not as a part of a culinary experience.

Additionally, people think we are crazy when M brings her own food, because pizza is so awesome.

Right now, even though she only has pizza maybe once every two weeks at events for church, school, or at the home of a friend, I still have this nagging feeling that we are playing a little Russian roulette with M's long term health.

So yes, folks. I will be sending food with M from time to time. After all, she doesn't even like the pizza provided at church. She eats it because she is hungry and there are no other options available.

And before you parents of non-diabetic children judge me by what an amazing killjoy I am, count your blessings that pizza is not on your list of worries.

I will offer up a prayer that it never will be.

Oh pizza, why must you be so cheap and easy?

Friday, October 28, 2011

Field of dreams

We traditionally eat dinner at my parents' house on Saturday. It's a good way for us to stay in touch and get together for a couple of hours each week. It usually involves some kind of beef (which M loves) some starch and a vegetable.

Not long after M was diagnosed with diabetes, however, we arrived at the house for our traditional fare, when my mother lets us know that we are having spaghetti. I was a little surprised at the announcement, as Mom knows that we had M on the rigid plan. This plan allowed us a certain number of carbs within a 5 carb range at certain times of the day. Pasta would surely put us over our dinner allotment for carbs.

But, Mom was grinning. She had made a discovery at the supermarket: Dreamfields Pasta, which claims to have only 5 net carbs per serving. Oh wait! Look closer. It has 5 digestible carbs per serving.

What?

If the idea of digestible carbs is new to you, it is to me, too. I continued to read the box:

Carbs: 41
Protected carbs: 36
Net digestible carbs: 5

Pardon me for being skeptical, but what the hell is a "protected" carb? I assume we are protecting it from being digested and absorbed into the human blood stream.

I wasn't buying it. Even if the company can somehow "protect" the carbs, how can doing that be any good for you? Do they wrap the carbs in Saran Wrap?

I looked on the Dreamfields website:

"Why do you say that Dreamfields Pasta only has 5 grams of digestible carbs when the nutrition label states that it has 41 grams of carbohydrates?



While the total number of carbohydrates is the same as traditional pasta, our patent-pending formula and unique manufacturing process protects all but 5 grams of carbohydrates from being digested. The Dreamfields fiber and protein blend creates a protective barrier to reduce starch digestion in the small intestine. The unabsorbed, or protected carbohydrates then pass to the colon where they are fermented, providing the same health benefits as fiber."
Yummy.
A unique manufacturing process! That spells flavorific!
Manufacturing: the same nutritional professionals that tried to convince us that creating artificial infant formula was better for our babies, only to be shot down by mother nature's unique "manufacturing" of easily digestible proteins.

Pardon me for feeling less than enthusiastic.

But, since Mom had gone to all of that trouble to make a special pasta, we ate it.

But we covered for 41 carbs with insulin. NOT for 5.

And guess what?

M's bg was in pretty good shape afterwards.

You would think that if we had given her enough insulin to cover for 36 extra carbs, she might have suffered a low. But she didn't.

So pardon me, Dreamfields, but I think you are full of hooey.

Hey! Maybe that's the unique manufacturing process!

Tuesday, October 18, 2011

Breast Cancer Envy

Breast cancer is a horrible disease. It threatens, and sometimes takes, lives. It alters the way a woman feels about herself and her own body. For this reason, it is recommended that women over forty start getting regular mammograms every year or two.

Billions of dollars every year are spent on education, research and prevention of breast cancer.

Kids in the high school where I teach sport "Save the boobies" wrist bands with the support of the administration.

There are organizations that will take your long hair, and use it to create wigs for women who are undergoing chemotherapy.

And every year comes the advent of breast cancer awareness month.

Today, M is participating in a breast cancer walk. A walk that is anticipated to have an attendance of over 5,000 people (it ended up being closer to 5,500!).

There are many wonderful events and campaigns that raise money for breast cancer research. I even remember nearly an entire season of General Hospital dedicated to breast cancer. During the season, the son of the breast cancer victim points out that while AIDS has turned out to be a popular charity, breast cancer kills many more people yearly.

Everyone wants to cure breast cancer. Do you think the victims of breast cancer are going to settle for better treatments? NO! They want a CURE! And I don't blame them.

But lets go back just a minute here. AJ Quartermaine, while breast cancer kills more people annually than AIDS, diabetes kills more people annually than breast cancer and AIDS combined.

While everyone seems to understand what breast cancer is, nearly 100% of the people I meet don't really understand what diabetes is. This includes some medical professionals.

We have diabetes walks. But the JDRF walk I attended last month, in the same community as M's breast cancer walk, had maybe 100 participants. MAYBE.

And, while General Hospital dedicated a lengthy, comprehensive, and detailed story line to breast cancer, what do we in the diabetic community get? Oliver, on Hannah Montana, is diagnosed with diabetes one day. Then we never see his bg meter again. Apparently Oliver is all better, and his daily management would not fit well into such a pop tween sitcom.

Finally, I am tired of people thinking that insulin is "good enough". Do you think that breast cancer patients think that mastectomies are "good enough"? I assure you, they do not.

Diabetics are expected to endure their illnesses, simply because it isn't "in your face". People can manage diabetes without you even noticing, so things must be good enough, right?

Nope.

Not even close.

Diabetes must be managed every minute of every day. It's like taking exams in class every day, except that not doing well could result in death.

Death.

We must need a better marketing team for diabetes. Maybe diabetics and their families are so busy handling the day-to-day struggles, that they don't have time to advocate for others with the disease.

Why does the public not seem to take diabetes seriously?

A nurse who goes to my church may have explained it best. She was commenting on another parishioner who routinely works very hard and volunteers regularly. But she, at times, pushes herself too hard, and doesn't take care of herself. The woman is diabetic.

One day, the nurse approached her and scolded her to take a break during our Christmas fair. Then she turned to me and said, "You know what they call diabetes, don't you? 'The silent killer'."

Well I, for one, am not going to remain "silent" any longer.

Good luck ladies!







Sunday, October 16, 2011

The stages of grief

This most recent summer, I realized that being diagnosed with Type 1 diabetes, or any other serious illness for that matter, can fall into that category that utilizes the five (or seven, depending on your school of thought) stages of grief.

I do not necessarily agree that grief can be divided into stages. This is a very inflexible-everything-can- be-qualified-and-quantified-and-progresses-in-a-linear-fashion way of thinking.

But, this summer,  I did get a good look at stage 1 - Denial.

Although in M's case, it was more like stage 4. Her first stage was acceptance, which is technically supposed to be stage 5.

Never let it be said that M does anything halfway. She did denial absolute justice.

She denied herself information that would better help her manage her diabetes, by not checking her blood sugar.

She denied the value of that information by simply making up blood sugar numbers to plug into her pump.

She denied that this could cause her any health problems by thinking that her method of "management" would be adequate.

And when I started probing her with questions about her management, she denied to herself that I would ever figure it out.

Now that she is no longer in denial, I will have to wait to see what unexpected turn her grief will take next.

Right now the safe bet might be on one of the unofficial stages: "whining".

Yeah, if we ever get through it!

Thursday, October 13, 2011

Concussion

As I may have mentioned, M is the goalie for her field hockey team. Although she has never played before this season, her improvement has been marked.

Earlier this week, however, her team got a new kind of penalty that neither she nor I had heard of. A player fell on the ball, apparently covering it with her body.

I guess this was a serious one, because M was set up in the goal while the rest of her team was set up behind the midline. A girl on the other team was given a one-on-one shot at the goal.

The girl wound up and smacked the ball. It traveled in an upward fashion, hitting May on the front of her (helmeted) head.

It would have been a lot cooler if it had deflected right back into the field, but instead it went into the corner of the goal.

I wondered if it hurt. So when M returned for a time out, I asked her how she felt. She said, "I have a wicked headache!"

Somewhat alarmed, but not panicked, I asked if she wanted some Tylenol. She said she would be fine, and finished out the game.

It is three days later, and she still has the headache. She took "the concussion test", which she did not want to do ("It's so friggin' long!"), and it came back as "not a concussion" but with "22 symptoms."

While I wait to hear from the trainer about her recommendations regarding a doctor visit, I decide to look up information about diabetes and concussions.

To my dismay, I found something. It seems that diabetics do not "withstand impacts to the head" as well as non-diabetics. This is something I had never thought about, and is certainly not up there with the "diabetic feet" issues that are so frequently communicated to the diabetic community.

Why, you may ask, would having diabetes matter to your head with regard to impact?

Evidently, if brain cells contain high levels of glucose and magnesium, they are practically invincible. Unfortunately, since the diabetic body doesn't use glucose very efficiently, and depletion of magnesium nearly always predates insulin resistance (in Type 2),  we have the perfect cocktail of brain cells' natural defenses going down.

Not good.

In the meantime, I will wait for advice from the trainer and the school nurse.

And I will look up new and exciting things for me to worry about.

Tuesday, October 4, 2011

JDRF vs. ADA

I am beginning to wonder if there is a competition /rivalry going on between JDRF and the ADA.

The fundraising walk in our area is a JDRF sponsored walk. I have been twice. About 100 people showed up both times.

The closest ADA "STOP DIABETES" walk is in Boston. Last year about 5,000 people showed up.

There are a couple of factors to take into account here. 1) Boston is a real, no-joke city and 2) the ADA supports research regarding both type 1 and type 2 diabetes. Since 90- 95% of all diabetes cases are type 2, perhaps the ADA will get more press and support as a result.

The JDRF only works with patients and research pertaining to type 1 diabetes, which is the one with the "dead" pancreas, that will not "go away".  (Since I am pretty sure that type 2 doesn't "go away" either, I am always surprised how often I must answer the question: "will she grow out of it?")

While the ADA sponsors M's diabetes camp, I have a soft spot in my heart for the JDRF.

On the other hand the aggressive tag "STOP DIABETES" makes it sound as if there will be cutting edge technology on the way at any moment. Bret Michaels has thrown his weight behind this organization.

Of course we have Nick Jonas and Mary Tyler Moore behind the JDRF.

What to do, what to do?

Since the JDRF walk was only a half an hour from my home, M and I volunteered what limited resources we had behind them.

The first time we walked, we simply showed up, paid $25 each, and walked the 5K circuit around the pond at NHTI.

This time we decided we would actually try to raise some money. After a few Facebook appeals, we recruited five walkers and raised over $600 (Thanks to all who donated!).

Again, there were only about 100 people there. There was a local radio station. There was a raffle. There was donated food. But there weren't a lot of people. The groups raised about $25,000 total. Which for 100 people isn't too bad. But it is disheartening to see such a tiny response. After all, the JDRF is the worldwide leader in funding research on Type 1, including the artificial pancreas, and the prevention of Type 1.

I know that Type 1 doesn't sound as sexy or life-threatening as cancer does. I know that people see insulin as a godsend that makes people's lives "normal". But more people die from diabetes than from breast cancer. And even though it is manageable, it is still hard. And when someone you love has it, it's really hard.

So maybe that's why the STOP DIABETES campaign is picking up steam. Maybe it sounds more exciting and proactive than a "research foundation".

Of course I wish both organizations the best of luck and a lot of support. We need to do whatever we can to find a cure.


Our walking team! Thanks guys!



Friday, September 30, 2011

A call from the nurse

So M has been in high school for about 6 weeks.

As with most high-schoolers, there have been some bumps along the way, but for the most part her transition has been pretty smooth, especially considering that her previous school was so tiny. And Montessori.

In a small Montessori school, diabetes was pretty easy to manage.

M could eat when she was hungry. She could check her bg any time she felt like it. She could leave her work for a moment without losing valuable instruction time.

In traditional public school, these options are not typically available.

For example, students are not allowed to eat in class.

Oh sure, because she has a "disability", M is permitted to eat in class. But if no one else is permitted to eat in class, then M feels like she is making a big stinky deal out of being "special".

To check her bg, M either has to check it in class, which causes a distraction, or excuse herself to go to the bathroom (Ick! High school bathrooms!) or the nurse's office. Leaving the room excludes her from valuable instruction time.

Not to mention that racing from room to room, visiting her locker, carrying and organizing a bunch of stuff, etc. gives her plenty of opportunities to "forget" that she has to take care of herself.

Overall, she forgets less than she might.

However, while at work the other day, the phone in my classroom rings. I pick up the phone and our school secretary asks me to hold the line for M's school nurse.

I go into "I-am-calm-and-will-not-panic" mode.

I try to sound pleasant as the nurse asks how I am. I say something foolish like, "I don't know. You tell me!"

She explains that M has had a couple of lows that morning, and that it took her a few hours to shake them. She had to lie down in the office for a while and missed her Spanish class and thus valuable instruction time. She is fine now.

The nurse goes on to explain that M has not been eating breakfast in the mornings, which is news to me. The nurse suggests that perhaps M doesn't have time in the mornings to eat.

I stupidly begin to argue with the messenger, "She has an hour..." but I cut myself off. It is not the nurse that needs to realize that she has plenty of time. I have met M before. She does not like to eat in the mornings. She never has. In fact, when she was in preschool, her teacher once called to ask me if I fed M breakfast in the morning, because she was always starving at 9:00 am. My answer at the time was, "I try to, but she only eats about two bites before she says she's full."

M is still the same person she was at three years old. She is never hungry in the morning. In Montessori school, M ate when she was hungry. The problem is that traditional schools need to have designated lunch times or students will lose valuable instruction time.

I tell the nurse that I will buy M some Zone bars so that she can shove something into her face before heading to school. The nurse thinks that this is a good idea.

I ask the nurse to please have M come visit her before the end of the day to check her bg again. She had a field hockey game that afternoon, and I didn't want to burden her coaches with a sick, weak, or unstable kid at an away game. The nurse agrees and I hang up.

It was my prep period, so I only had one student in the classroom with me, looking for extra help.

"Is everything okay with M?" she asked. All of my students know about M's type 1.

"Yes," I sigh. "At least it will be."

Mmmm. Breakfast!


Monday, September 12, 2011

Field Hockey and Diabetes


Before I launch into this post, I would like to say that I am so very proud of M for trying field hockey. She loves lacrosse, and decided that she would like to stay conditioned so that she would be in good shape for the high school lacrosse team in the spring. Joining another team so that she could stay in shape seemed an excellent idea.

She had never played field hockey before.

After two weeks, she told the coach that she would like to try the goalie position. The coach assigned her a mentor to show her the ropes, and the following day she was playing goalie for a full Junior Varsity game. WOW! Talk about fearless.

You would think I would have learned all of the coping strategies necessary to deal with her participation in field hockey this fall, after all of the exciting experiences we had last spring in lacrosse.

Well, high school sports are really different from middle school sports.

First of all, in high school, they have practice or a game every day.

This means that M is never home before 5:00 pm on a school night. It also means that two times per week she isn't home before 8:00 pm.

For most parents, this inconvenience means setting aside another plate for dinner, and a grumpy kid trying to get his homework done before 11:00 pm. For many other parents, it means driving forgotten gear to games or packing extra snacks. It also means a lot more laundry and a higher water bill as your teen showers twice every day.

For me, it means all of these things, but it also means not knowing how M is doing that day until she comes home with a headache, or nausea, or battling a low bg that won't go away. All three of these situations occurred during M's first week of school.

Headache- Cause: who knows? Dehydration? Her bg seemed fine, although she didn't test it very often. She is supposed to test it 6 times per day. But, because of the tight schedule during the school day, she managed to test it only once during school, leaving her with tests before school, during lunch, before the game, and after the game/dinner.

Nausea and seemingly ceaseless low- Cause: High bg 437. M "just didn't check" her bg before the game. After the game, that 437 set off a roller coaster for the next 24 hours.
  • correct 302
  • eat and bolus 258
  • bedtime check 198
  • 6:00 am 49
  • 6:20 am 98
  • 8:00 am 62
  • 10:00 am 81
  • 11:00 am 160 (yea!)
  • lunch 215
  • 2:00 pm 173
  • 7:00 pm 245
  • 9:00 pm 181
Sigh.

These are hard-learned lessons for a fourteen-year-old. M is starting to remember how sick diabetes can make one feel. That nausea didn't go away for a long time.

These ups and downs are not as fun as they sound!

For now things are "normal". There are no practices this weekend. Hopefully we can use that time to level her out.

Thinking ahead, maybe we will need to designate another "official" time for her to check her bg during school. Then she might be able to stay on top of her bg levels before they develop into crazy bg swings.

In the meantime, I will try to concentrate on cheering M on during a game, rather than searching for evidence of a diabetic crisis looming on the horizon.


Tuesday, September 6, 2011

Paranoia

Recently, Joanne blogged about what is known in the DOC as "the thought." Her son is approaching the age at which her daughter was diagnosed with Type 1 diabetes. "The thought" has also been addressed by Kerri, a diabetic mother with a not-quite-two-year-old.

"The thought" plagues every parent that has diabetes, or has a child with diabetes. "The thought" is the idea that perhaps another one of our loved ones will be stricken with this disease.

You see, nearly everyone's Type 1 diabetes diagnosis has a similar story. " I felt sick/ nauseous/ fatigued for two/ three weeks. I was eating/ drinking all of the time. I was also extremely moody. I thought I was just suffering from a bad cold/ going through a growth spurt. After a while, I went/was taken to the doctor, where I found out that I lost 10/ 14 / 20 pounds in those couple of weeks. The doctor tested my blood sugar and it was 470/635/900. I didn't really know what that meant until I found out that a normal person's blood sugar readings are between 80 and 100."

(FYI: M's story is nauseous, fatigued, three weeks, eating, cold and growth spurt, 20 lbs, bg of 635).

But, as you can see, the symptoms of diabetes can easily be misconstrued as a bad cold, mono, or a mild case of the flu. In fact, in ancient times, there was only one way to identify whether someone had diabetes. One had to taste the patient's urine. If it was really sweet, then one knew that the person had diabetes and was going to die within a year or two. (Yikes!)

The point is, the symptoms of diabetes are very similar to those of many other, less life-threatening maladies. A list of such common symptoms can make things a little harrowing for those of us who have gone through the process of Type 1 diagnosis in the past.

Case in point: M has an older brother. Not one full year after M was diagnosed, he started exhibiting these symptoms: fatigue, pallid complexion, unusual thirst, and weight loss.

My mind went right to diabetes.

Now perhaps this seems crazy to a medical professional. After all, M is the ONLY person in my giant extended family with Type 1. The closest relative we could find that had it was my father's cousin's grandson. (What is that, her 17th cousin 7 times removed? I never understood how that worked...). Indeed I wondered if I might be a little paranoid.

But I felt better after talking with Bill.

I asked, "Do you think I'm crazy for thinking that our son could possibly have diabetes?"

I felt so much less crazy when he said this:

"No. I'm thinking that it could be diabetes. Of course we are thinking it could be diabetes. Why wouldn't we?"

Which is one of the many reasons I love this man.

The quick answer was to use May's bg meter on her brother to learn that his bg was normal, which it was. He just had a bad cold. But I will tell you that the 5 seconds of waiting for the result were the longest 5 seconds we had had in a long time.

I see diabetes everywhere. One week my dog seems especially thirsty. Does she have diabetes? I have a student who seems increasingly pale and tired. Does she have diabetes?

It's nerve-wracking.

"The thought" even makes people feel guilty for thinking it, as if by thinking it, we might make it happen.

"The thought" robs people of normalcy.

Well, at least the normalcy you can have while checking, double checking, and triple checking bg levels, adjusting insulin doses, tracking all food consumption, waking up in the middle of the night to make sure your kid is still breathing, etc.

But seriously, with all the punishment that comes with diabetes, it seems that "the thought" just adds insult to injury.

We must rally to find a cure for "the thought".

I don't know if this quite qualifies as a "cure" but maybe it's a start!



Thursday, September 1, 2011

Flu shots

As I drive around scouting Back to School sales, I have begun to notice those signs cropping up outside of pharmacies.



Back in my more carefree days, I thought flu shots were for the elderly and infirm.

I have scoffed at flu shots, thinking that they were an unnecessary expense and a hassle. I had heard too many stories about people getting a mild case of the flu from the flu shot, and I thought that I would take my chances with the real flu.

My gambling paid off. My kids had never had neither the shot nor the flu. After 21 years of teaching, I have had the flu twice. Each time it was two horrible days of torture, and then it was over.

What doesn't kill you makes you stronger, right?

But then M was diagnosed with diabetes, and I had to reconsider my relationship with the flu shot. I hated to do it, but she was going to have to get it.

Every year.

Vomiting is just too big a deal when you are diabetic.

Another one of life's choices robbed by diabetes.

Monday, August 29, 2011

Charlie Kimball

Almost immediately after M was diagnosed with Type 1 diabetes, Bill and I learned that recently confirmed Supreme Court Justice Sonia Sotomayor also had Type 1. We were excited to be able to hold up a prominent role model with Type 1, so that M could see that, even living with Type 1, many possibilities were within her reach.

Sorry Sonia, just not cool enough for an 11-year-old. WE love you, though!


Unfortunately, M was 11 years old at the time, and a supreme court justice with Type 1 did not impress her.

Nick Jonas, on the other hand, did.

At least M notices you, Nick. Even if she prefers your brother.

She watched the Jonas Brothers TV show, and although she preferred Kevin, she admired Nick's handling of the disease. She even bought the Nick Jonas dog tags that helped support diabetic research. And she wore them almost every day.

A few months later she heard about Brett Michaels, some old 1980's rock star, who had Type 1, and she thought it was nice that he won Celebrity Apprentice and donated his winnings to the American Diabetes Association.
Live to rock, rock to live, Baby!

But this year, her father learned about a race car driver who had Type 1. Being a car guy and a mechanical engineer, he found the story of a man driving a car at over 200 miles per hour while managing his bg fascinating.

The man's name is Charlie Kimball.

"Hi, I'm Charlie Kimball!"

Now, if you think that what M goes through every day sounds like a royal pain, you should hear what a normal day at work looks like for this guy.

When she turns 16, M will have to check her bg before starting her car each and every time that she drives. This is so M can treat herself prior to operating the machine if she needs to. If she does lose consciousness, she might hit a tree, or another person/car/cat, and someone could be hurt or killed.

If Charlie has a dangerous low on an ordinary work day, he will likely do millions of dollars in damage to many cars, and most certainly injure or kill someone along the way. Charlie says that no one in the race circuits has ever expressed concerns about his diabetes. I suspect that they really don't understand the disease.

Of course, Charlie is VERY responsible and keeps a doctor on staff in the pits with him.

Instead of a water tank in the car, Charlie has a water tank AND a sugar-water tank, in case his bg slips down a little.

Well, you may be thinking, how does he know what his bg is? It's not as if he can pull over and check his bg with a lancet and some test strips. Well, Charlie has a CGM (continuous glucose monitoring device). This nifty device constantly reads bg, and indicates a trend line showing whether his bg is climbing or descending. Pretty nifty, huh? He straps the monitor to his steering wheel, and calls out his bg readings to his doctor over his headset. She then lets him know what corrective actions to take, if any.

I cannot imagine trying to drive 185 mph, two feet away from 35 other cars while managing any health problem, so my hat goes off to Charlie. Our whole family is - in the New England vernacular - "wicked impressed."

While at diabetes camp, M has heard from skiers and bicyclists who talked to campers about managing their Type 1 while pursuing their athletic dreams. This year, it was Charlie Kimball who came to speak to them.

M loved him. She said that he was interesting, kind, engaging, and that he was smart enough to know to repeat some of the quieter questions from the crowd so that everyone could hear.

As a mother, I appreciate Charlie Kimball. He has faced his diagnosis without fear, and has embraced the diabetic community. He, although diagnosed just four short years ago, has begun giving back to that community.

I wish Charlie the best of luck. Our whole family will be watching him!

Friday, August 26, 2011

504 plan

I have mentioned before that I teach in high school.

I may have also mentioned that my kids attended Montessori schools and my older son attended a Catholic high school.

I have never really had the "public school" experience before. At least not from the parenting end.

Now, as a teacher, I receive 504 plans at the beginning of every semester. These plans tell me which student needs special accommodations, eg: make sure this child doesn't eat peanut products, make sure this child is able to use the bathroom as often as he likes, please allow child to eat in classroom, etc.

Now that M is entering public high school, I realize that she probably needs a 504 plan.

The problem is this: I didn't know I was supposed to write the darn thing!

Now, don't ask me who I thought was supposed to write it. I guess I thought that some medical professional would do it. Our DNE, the school nurse, somebody else that wasn't me. Someone that know what they are doing.

Our DNE gave me a sample 504 plan, prepared by the ADA and the DREDF. The sample was lengthy (8 pages!) , and sounded punitive: "Do this or else!" - not exactly the coalition-building language I was seeking. Being a teacher myself, I found the approach of the sample a little offensive. It assumed that I couldn't be trusted to know that if a kid leaves for health management reasons, he should not be penalized.

So I did what any ambivalent parent might do: I tried to get out of writing it.

I e-mailed the guidance counselor who helped M put together her schedule, and asked if I really needed a 504 plan. After all, I reasoned in the e-mail, we interviewed the nurse before we even decided to enroll M in this school, and decided that she was capable. M is independent with her diabetes management so, aside from the occasional snack in class or walk to the nurse' office, she should be fine. Couldn't I just e-mail the teachers, explain what's going on, and talk with them like civilized human beings?

The short answer was no.

"A 504 plan is a very important legal document that protects all of the individuals involved."

I sighed, understanding that people feel better when there is a form filled out somewhere. I also understand that a 504 plan can simplify things for people new to diabetes.

But I don't wanna! It looks hard. And redundant.

I think I would be far more keen to write and implement a plan if M were a frail 6-year-old with Type 1, rather than the robust 14-year-old that she has become. She is far more independent and less distractable than many children who are younger. Also, since most people are diagnosed with diabetes as children or young adults, it makes sense that more children are diagnosed with Type 1 diabetes by the time they hit high school. As a result, I think that a lot more teachers and staff have been exposed to and understand Type 1 diabetes at the high school level.

I pondered my justifications for being a lazy butthead, and continued reading the e-mail, disappointed.

The guidance counselor indicated that the e-mail I sent him would be forwarded to M's regular guidance counselor, so that he could be in touch with me. The regular guidance counselor and I would write the 504 together.

Well today, I got an e-mail from M's regular guidance counselor. This is what it said:

We have several students in the school who have diabetes and other medical issues. They are managed by the school nurse- in my opinion - extremely well. All teachers are notified and the nurse develops a close relationship with the student with daily check-ins as needed. This is available without a 504 plan.

Of course as a parent you have a right to a 504 plan if you would like. I guess I would suggest that maybe we start off without one and see how things go. We can always develop a 504 plan at any time should any party feel it necessary.

Let me know how you would like to proceed or if you would like to come in and meet me.

And I think, "YES!"

Believing that my laziness has paid off, I triumphantly shoot the regular guidance counselor an e-mail, telling him that I think that the "wait and see" approach is a great idea.


But then I realize that laziness is not going to happen. I have decided that I will print up a diabetic cheat sheet for M's teachers, like I did for her coaches, and give them my contact information in case they have any questions.

I comfort myself with the thought that it will probably take less time to write than the 504. And hopefully the language will not be punitive.

And then we'll wait and see. 

Of course, we still have about 20 other forms to fill out!