On her own

M attended the local public school for her freshman year, and it seemed to go well. The nurse was very thorough, sometimes to the point of being invasive. M enjoyed the nurse and her assistant, however, and the relationship was fine, even if the nurse would seem to want to give a little too much input about M's care.

Because the nurse was at a public school, she needed to be sure that all of the "t"s were crossed and the "i"s were dotted, which often left me looking like an incompetent parent.

You see, since my kids spent most of their lives in private schools, the mountain of paperwork I was required to fill each year for the public school seemed ridiculous.

I think I had a little subconscious rebellion against it too, because I would unwittingly submit incomplete paperwork. There would be a signature missing on one form, the double sided form had only one side filled out...you get the idea.

Anyhow, halfway through her sophomore year, M decided that she might meet with better success at the same private school attended by her brother.

The nurse at the public school diligently forwarded her forms to the private school, only to be met with indifference.

There is no nurse a M's new school.

There is a designated adult to deal with the storage and administration of medicines for those students who have chronic health problems, or perhaps those on medication for their ADHD (Is that considered a chronic health problem? I wonder.)

So my attitude had to shift again, toward taking on more responsibility as a family.

Honestly, it was kind of a relief.

I wrote my standard "Greetings! This is what diabetes is, and how it will likely affect you and your classroom" letter. Shortly afterwards, I received a letter from the dean of students, letting me know that all of M's teachers had met to go over my letter, and had been instructed to contact me with any questions.

I was never contacted.

Weirdly enough, when M's parent/teacher conferences came up, no one even mentioned her diabetes, because she was doing fine. Her blood sugar had been pretty even, and her grades were pretty steady. He behavior was good ( you know, for a teenaged girl), and she was making friends.

But I guess it didn't surprise me that much.

What I have learned about my daughter is that she will rise and sink to suit the occasion. In this case, she was treated like a responsible young adult, who is able to monitor and control her disease independently.

And guess what?

She is.

Unpopular

In the STAR program, we had a parent meeting about 504 plans. Everyone in the room talked about how hard it was for them to get teachers and administrators to follow the 504 plans for their child.

When it was my turn to speak, I admitted that I didn't use a 504 plan.

The group leader was evidently distraught at the prospect of a diabetic child running around without some sort of paperwork marking her as "special".

I explained that each year I write a letter to every teacher and coach that comes into contact with M, and cc the school nurse, who is obviously aware of her condition. I believe that for M, this is special paperwork enough: especially since (so far) I have a system of open communication with the school she attends.

A parent in the group asked me if teachers allow her the special accommodations needed to manage her type 1 at school. I responded that yes, they do, although M sometimes needs to remind them that she has diabetes.

For example, M's math teacher, whom she adores, was giving a test when M realized that the tubing on her pump was leaking. Panicked, she raised her hand and asked to go to the nurse.

"Can it wait?" the teacher asked.

M shook her head, "no" and was sent on her way.

When I spoke to the same teacher at a regularly scheduled parent conference, she admitted that she had forgotten that M had diabetes. "I assumed it was a female issue", she told me.

We took that opportunity to explain what diabetes is, and the multiple ways it can present itself in class.

She was sincerely fascinated, and we nearly ran over the allotted time.

A parent in the group said that rather than having to give "mini lessons" like this to M's teachers, a 504 would educate them. and save me time. Then she told me about her yearly ritual: she holds a meeting with all of her child's teachers at the beginning of the year to explain what diabetes is, and how to care for her child. Then each teacher is handed the 504 and the care plan, and asked if they have any questions.

I listened to her, and what she said made sense. But arguing that the 504 would somehow save me time was not true. I could hold such a meeting with M's teachers and never hand them a sheet of paper.

I was smart enough not to say this, however.

But the group leader leaped on the parent's comments and took the opportunity to press the issue with me. As the entire group looked on, she explained that since the 504 is a legal document that it would protect our family. "From what?" I wondered. If something serious happens to M in school, all a 504 does is give me the right to sue the school, which, considering that I had already laid it all out in a letter, is probably true anyway. Suing a school wouldn't help me, and a 504 is no guarantee that she would get the care that she needed. I mean, I know it couldn't hurt, but with only two and a half years left of public high school, was it really worth the effort? After all, when she was in a teeny-tiny Montessori school, M didn't even have a school nurse and managed quite well.

The group leader told me that she would be happy to help me with the legalities and formation of the document, to which I shrugged and replied, "You know, it's a lot of work, and I just don't want to do it."

After that little tidbit popped out of my mouth, a nano-second of doubt occurred: a tiny moment where I felt sure that I had said the wrong thing and would be upbraided in front of my peers.

But nobody said anything, and we just moved on to another topic.

Yea me!

Now we'll see if anyone talks to me at the next meeting.

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!

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!

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!

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!

Lying to the nurse

When I first told our Diabetes Nurse Educator that my daughter did not have a nurse at her school, she was quite concerned.

"What will you do in case of an emergency? Who will be trained to monitor your daughter? Who will check her math before she administers her doses of insulin?"

Just to keep things simple I lied. Well, not really. I told her the truth, but I knew I would not be using the solutions I proposed.

There was a public school within walking distance of M's school. There they had a nurse. Our state requires that children in private schools, who have special needs, have access to the services they require. The services are provided by the school district in which the private school resides.

In other words, if Sally's school is in Concord, and Sally has a reading disability, she may obtain services through the Concord school district.

We can discuss whether this law is fair later.

As such, M had legal access to the services provided by the public school that was within walking distance of the private school she attends.

This seemed to satisfy the nurse.

But I was lying. I was never going to have the nurse from the school across the field come serve my daughter, check her math, or anything else. She is too busy, and the whole idea was just complicated.

Here is the truth. The school where I work is exactly one mile from my daughter's school. It is on the same side of the same street! I could RUN there faster than it would take a nurse from another school to disentangle herself from her normal caseload to attend to my daughter.

Another truth is that the people who run my daughter's school are NOT useless idiots. They are quite reasonable and intelligent. In fact, they have been some of the strongest partners in allowing my daughter to manage her diabetes at school.  M's current endocrinologist wonders if going to a school with a nurse might change just how well M manages her care, and not for the better.

M's teacher, a man in his late 50s, had already developed an interest in diabetes. He is what some medical professionals call a "borderline" diabetic. He began researching diabetes, and to monitor his own bg levels. For the first two months of M's diagnosis, her teacher would sit with M, and the two of them would test their blood sugar together. Then together, they would calculate how much insulin she would need to cover her meal.

After those two months, summer came. But by the time summer was over and M entered her first full school year as a diabetic, she was a pro. In addition, she knew she could ask her teacher for help, and he knew what he was talking about.

As far as training, I trained the staff myself. They were attentive, and truly part of the plan to keep M healthy. I never had the hospital fill out the special forms needed to make sure that M's needs were accommodated. No 504 plan, no written instructions directly from the doctor.  I did, however, have to face the slight paling of the group as I described how to administer glucagon.

It took me a year to tell the truth to the nurse. After M had a couple of A1Cs of 6.4 to 7.0, I thought it might be safe to share our secret with her.

She took it well, but she said that she wanted me to continue to hold the nurse up the street in reserve.

I lied to her and said I would.

Telling classmates

M said a lot of wise things after being diagnosed.

One of them followed my statement about "message control". I asked her to refrain from telling her classmates about her diabetes so that we could tell them together, all at once, and answer their questions. I pointed at her classmates' propensity for gossip.

To which M said, "Yeah, because we need support, not drama."

We first spoke with directors of M's little Montessori school, to discuss with them her schedule, her responsibilities and emergency procedures. We then scheduled to meet with the class just before lunch on M's first day back.

It is fortunate that I am a teacher. I talk to kids all day, and enjoy helping them understand new things. I also feel that I have the advantage of knowing and understanding the broad capabilities they possess. I credit them with being better able to handle things than many adults believe.

They did not disappoint. M's peers were very interested in what I had to say, and asked very intelligent questions.

We started off the talk by having kids recall some of the changes they had seen in M over the past several weeks: weight loss, vague illness, pallid complexion, and (their favorite to recount) crankiness. We ended that portion of the discussion with our subsequent trip to the doctor and the diagnosis (we skipped the helicopter bit).

We defined diabetes. Explained why M would need shots, and what symptoms of bg highs and lows might look like. We enlisted the kids' help in supporting M if she seemed a little "off"

We talked about nuts and bolts. "This is a meter. This is how it is used (demonstration)."
"These are the needles M will have to use. See how small they are?"
"This is how often M needs to inject herself."
"M has a very restricted diet (remember reader, she started on the rigid program). She can eat whatever she likes, but it must fit into the number of carbohydrates needed at certain times of day. She can take home special treats to eat later."
"M can make these determinations herself. If you have questions, she will be happy to answer them, but please assume that she knows whether she can eat something or not."

The students in M's class understand empowerment. They had no problem allowing M to make her own food choices. In the coming weeks, however, they did ask M a lot of questions based on things they had heard at home. M had no problem setting them straight.

The final result: I think that the kids in M's class are better educated about diabetes than nearly every kid that is not a diabetic himself.

Sometimes, when I pick up M after school, kids will report to me if she had a high or low bg count. Even better, they might tell me, "Wow, M's had great bg at lunch all week! It been around 107 just about every day!"

Because we had tailored the message to her friends, M was able to share her needs with and demonstrate her capabilities to her peers. No one in her class thought they were going to catch diabetes, nor did they perceive that M was in eminent danger. They DID understand that diabetes is both serious and manageable, and embraced their partnership in helping M maintain her good health.

Within a week, M was back to climbing trees and scraping her knees on the playground, and no one was treating her like an invalid.

In short, we had achieved our goal: support without drama.