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.

Dangerous and Unintended Consequences

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

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

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

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

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

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

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

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

Oh.....

The insulin pump.

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

That thing.

She will be driving soon.

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


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

But this.

This is a genuine hazard.

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

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

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

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