504, IEP, and other educational jargon

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

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

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

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

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 Some of them are even outdated.

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

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

Every day.

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

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

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

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

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

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

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

The squeaky wheel gets the grease.

A good health advocate is learning skills for life.

Educating others helps us all.

Insert platitude here.

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

STAR- FYI

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

STAR: Steps Toward Adult Responsibility.

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

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

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

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

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

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

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

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

And we don't all agree.

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

Like how to change my doctor.

But that's another post.

Dominoes

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

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

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

"Please check your blood sugar," I said.

It's 35.

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

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

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

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

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

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

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

But back to our story.

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

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

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

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

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

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

AAAAAUGH!

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

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

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

Well, diabetic normal.

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

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

New Traditions

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

Case in point: birthdays.

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

And yet it is everywhere.

But not in our family.

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

This tradition began with M's birthday.

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

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

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

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

Sick kittens and other things that piss me off

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

Campaign for a kitten

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

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

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

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

WHAT!??!

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

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

Super.

Stupid kitten.

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

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

Fine world, have it your way.

Empty

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

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

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

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

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

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

Oh my, yes!

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

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

But friends happen.

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

Then she ate a Reese's Peanut Butter Cup.

Then chaos ensued.

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

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

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

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

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

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

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