Friday, September 14, 2007

Just when I get comfortable...

I've been debating about posting this. But, it's what's on my mind lately. I've learned that sometimes just by writing about things I'm able to just let them go.

I had a message to call Riley's teacher when I got home Tuesday afternoon. I thought it was kind of strange because she always calls my cell phone. I soon found out why she called me at home. It turned into a marathon conversation.

She said that the elementary school principle had come to her and said that she thought it may be a liability issue for her to be giving Riley's insulin. And, that there is a teacher's aide at the school that is an EMT and had agreed to give Riley his insulin so his teacher could focus more on the class.

My hackles went up. First, the principle had made decisions about my son's health without ever consulting me. Sorry, but she doesn't just find any old body to give my child insulin. Secondly, Riley's teacher only deals with his insulin pump while all the kids are eating snack and lunch. It's not taking away from any class time.

I ranted and raved. The teacher agreed with everything I said. She said that she had no problem giving Riley his insulin. She said what happened was that she asked for some help at lunchtime and snack time. She has a full time assistant, but with the class size and the activity level of the class, she still needed a little more help. And, the fact that she had to help Riley with his insulin factored in too. But, she never asked for help with Riley. She asked for help getting snack and lunch passed out in the classroom.

I became even more irate. Riley may be part of the problem, but he is not the cause of the problem. She assured me that Riley is very well-behaved and that she has absolutely no problems out of him all day. I then asked how often she had to deal with his diabetes on an average day. (He hasn't gone low at school since the first week.) And she answered, only at snack and lunch.

I eventually calmed down. I asked her just to make sure if she was OK giving Riley's insulin. She assured me she was. She said it was a little overwhelming at first, but now she was very comfortable doing it. (Keep in mind, she doesn't check his sugar. She counts his carbs and administers his insulin. It's not a very time consuming task once you get used to it.)

Before I hung up, she said, "And, there's one more thing I want to mention to you." My heart dropped. "I just wanted to let you know that the principle (For the purposes of this post, I will call her Miss B.) questioned me about Riley eating school lunches."

She said that she was telling Miss B how helpful I had been and that I had gone to the lunch lady and figured out the carb counts for things so that Riley could eat school lunches.

She said Miss B was "appalled" that I would let Riley eat school lunches. And, she said that I should not let him eat any lunches from school until his sugars become stabilized. Also, she did not think that I should have let him have a cupcake at the birthday party that a little girl had at school one day.

My head nearly exploded. The teacher said she just wanted to let me know so that if it came up in conversation I wouldn't be blindsided. I told her I appreciated it. Because, if I didn't have that heads up I don't know what I would tell Miss B if she mentioned it to me. But, I can assure you it wouldn't be pretty.

So, first thing Wednesday morning I called the school to arrange a meeting with Miss B. I told them that the meeting had to occur that day because it affected my child's health. I also said that I wanted the main principle in the meeting too. (Riley's school has the head principle as well as a principle for the elementary school students and another for the middle and upper school students.) I said I wanted someone else in there to witness what was said.

Also, I had dealt with Miss B before. She has a tendency to not listen and she can be rude at times. If I went off on her I wanted a witness. I have also spoken with Mr. M (the head man) and find him to be helpful and accommodating.

Miss B called me back a little later and said she would be glad to meet with me. Then, she went on to say, "But, I'll be glad to just get someone to help Mrs. W pass out snack and lunch so that she can continue to give Riley his insulin."

I told her that sounded like a great idea, but I still wanted to meet with her. Oh, no, she wasn't getting off that easily. She was going to listen to what I had to say. And, I was going to say it all in front of her boss.

Michael and I met with her in Mr. M's office. She started off with, "I really hope there hasn't been any misunderstanding. I wasn't trying to make an 'administrative decision'. I just thought that it would make more sense if someone with a little medical background gave Riley his insulin instead."

Michael and I told her that it would make more sense to keep things like they are. Things were working just fine for the first 11 days. Now, all of a sudden, there is a problem. Also, I had spoken with Miss B about all of this before the school year ended last year. She told me then that I needed to work things out with Riley's teacher. And, that's exactly what I did.

Miss B then said, "Mrs. W is very comfortable giving Riley his insulin. She actually doesn't want to turn that over to anyone else."

I told her I didn't either, so I didn't really see where the problem was. She then said, "Well, Mrs. W came to me and said she needed help at snack and lunch. So, I just thought it would make sense to get someone with a little medical knowledge to take over doing the insulin pump for her."

Michael told her that he did not appreciate her jumping to the conclusion that if Mrs. W needed help it was because of the diabetic kid. Mrs. W has a pretty rowdy class. Some of the kids have problems sitting still. We have been assured by Mrs. W that Riley has been "a perfect angel". He said that he was upset that the 2-3 minutes that she spent dealing with Riley's pump was being made a big deal out of while she has other kids in her class that because of their behavior got way more of her time and attention.

Then I told her that Mrs. W had been trained to give Riley his insulin and that we started talking about it several months ago. Then, Michael piped in and told her that I have a BS degree in nursing and before Riley got the pump I had never even laid eyes on one before. So, he doubted an EMT would have any knowledge of the pump either.

I looked at Mr. M and said, "It seems to me that you don't need any training to open a milk carton for a kid. But, you do need training to give my son insulin. Why doesn't the teacher's aide assist with snack and lunch and just let Mrs. W. continue to give the insulin like before?"

He said, "As long as Mrs. W is fine giving his insulin and you are fine with her giving it, then I don't see why we need to change anything."

They decided to get the teacher's aide/EMT to go in the class at snack and lunch to help pass out the food while Mrs. W continued to give Riley his insulin.

Then, just when I thought things were over, Miss B said, "I was looking at the carb list you gave Mrs. W. And, I see that Riley is eating some school lunches (by the way, Riley has only eaten one school lunch since school started). I was just concerned because school lunches have a lot of carbs in them. Also, she said Riley ate a cupcake at a party the other day."

You see, it is good that Mrs. W had pre-warned me about this. Because, otherwise, I probably would have ripped this woman's head off and handed it to Mr. M. But, instead, I calmly explained that Riley can eat anything that any of the other kids can eat as long as he receives insulin. I also told her that if a meal he was eating had a little more carbs than I liked I was ordering Riley water to drink instead of milk, to cut down on the carb count. Then, I explained to her that it was important to me that Riley be treated like the rest of the kids as much as possible. I also told her that I was offended that she thought I would jeopardize my child's health in order to let him be like the other kids.

That's when Mr. M piped in and said, "Yeah, you're not going to let him eat a cupcake just so he can be like everyone else if it's going to kill him."

I then said that cake and ice cream don't really affect his sugar much at all. And, that the foods that do, pastas and for some reason Cheese Nips are limited to special occasions.

That was the gist of the meeting. We did spend more time chatting with Mr. M about his step-son who has gone off to boarding school but was in Holden's class last year. All while, Miss B sulked in the corner.

Later that night, after Riley had eaten a piece of my dad's birthday cake, I checked his sugar two hours later and it was 130. I just wanted to call Miss B up and tell her that she could kiss my butt. (Yes, I know my maturity level is astounding.) But, I'm sure she would just be appalled that I let him have cake at all.

I told Michael what bothers me most is that this is something Riley will have to deal with for the rest of his life. People who are ignorant about his disease, yet think they know everything. People who even after you tell them that yes, you can have that piece of cake shake their head and pity you because they think you are in denial about your own disease.

All those people that feel that way, they can kiss my butt too.

13 comments:

Vivian said...

Oh Penny, I have so felt your anger and frustration. Ignorance is astounding. The whole school lunch issue got so bad last year that I had the dietician from his D-team call the school. They backed off a bit after that. Thankfully this year the school nurse (who is only at his school once a week) writes all the carb counts on a monthly menu for the teacher to go by. So far it is working great. Hang in there, and know that if you want to go insane on someone and need back up, I am only a state away. ;)

Allison said...

Well it sounds like the whole "EMT giving the insulin" thing was more of a misunderstanding than anything, and that it cooled over pretty quickly, so that's good.

I always laugh when people ask me "Is your blood sugar under control?" because I always think, "What exactly does that mean? All the time? Some of the time? In the mornings? At night?" "Control" to me is an A1C in the range that won't cause severe complications. So when I read a line like "sugars become stabilized" all I can think of is, "When? when I'm dead?" I know it's not their fault for not knowing how hard diabetes is but sometimes I swear my eyes roll all the way back into my head!

Allison said...
This comment has been removed by the author.
Penny said...

Vivian,

I remember the lunch issues you had. I told you I'd stand around the corner and slap the lunch lady's hand when she took food off of Daniel's tray. It makes me mad now just thinking about it.

And, thanks for having my back. The girls I worked with said they already had my bail money in case things got ugly at the meeting:-)

Allison,

When Riley's teacher told me what she said about his sugars being "stabalized". I said, "He has type 1. Unless he's cured they will never be stabalized."

Then, his dentist asked me yesterday if Riley's sugars were well-controlled. I just looked at her and nodded my head. What do you say to a question like that? It really depends on which day you ask.

Carey said...

Glad to hear you're not in jail. You had every right to be furious.

We had a similar statement from the school nurse who asked, "What do the doctors say about the fact that he's not stabalized?"

Makes me want to snap her with a tongue depressor.

Caro said...

Penny,

I'm appalled at Miss B. And I'm 100% with you on the way you've dealt with this.

I hate the way people assume they know everything about diabetes. How it doesn't seem to cross their minds that if you live with this 24/7 you might just possibly know an awful more than they do. I tend to think people like this must assume I'm on some kind of self-destruct mission - they probably assume I brought my diabetes on by eating too much sugar as well.

When I read about you explaining how Riley can eat anything as long as he has the insulin for it, I hear my own mum, years ago, saying the same thing, and I re-live my own, more recent, explanations too.

Your response about the dentist in the comment above has touched me, as a dentist. I talked about this in a post I made yesterday, but reading what you've said has made me realise that not only do I need to be more open about my own diabetes, but I also need to be more explicit when I ask about control. I need to make it clear that I'm focusing on the overall picture. Dental complications have risk factors like every other complication. A1c values predict risk of periodontal disease and frequency of hypoglycaemia and frequency of snacking contribute to decay risk. When I've cringed at asking about control I've been right to do so. I've always known how I hate those questions, and from now on I'm definitely re-phrasing. It strikes me how even as a diabetic myself, I can still be guilty of the things we all hate.

George said...

Oh wow this made me so angry! I am glad Mrs. W told you about what Miss B said (although I kinda secretly wished for the head tearing thing).

You handled it so well.

bingsy said...

I presume the "B" in Ms. B stands for the initial of her first name, but I am inclined to believe it stands for something else that starts with that letter.

It was all just so insensitive, and I think Michael did a good job revealing the scapegoating nature of it as well.

I knew so little about diabetes until I began reading your blog. Some things are still a little fuzzy to me, like I don't fully understand the carb and glycemic index thing. I had read that al dente pasta was low GI, but I secretly worried that it was too good to be true. Is it just carb, or does GI matter at all?

Are there differences in childhood onset diabetes?

I have a friend that has this type of diabetes, and he never eats cakes or sodas or things that seem overtly refined sugary.

At any rate I want you to know I do read your blog all the time. I just feel hesitant to comment on some of the diabetes issues because I really am quite ignorant except for my friend mentioned above and the things you have already written. I never want to say or write anything insensitive unintentionally. I guess I just hate that this event smacked of so much judging and assuming, and hopefully that is something I do not do when it comes to Riley and his diabetes.

I have the ultimate faith and you and Michael. I believe Riley will be okay because he lucked out in the parents, brother, and grandparents department.

Lori said...

This will be a problem for ever because of ignorant people who do not understand that a Type I diabetic is not that limited in what they can eat. They get confused and consider that all diabetes is the same. I just love that everyone considers themselves the authority on the subject over the parents and other with actual training. Keep up the good work with Riley!

Anonymous said...

Good for you! Glad you had the head principal at the meeting as a witness. She was more careful about how she reacted as a result. Regarding pasta -- and I don't know if your son craves pasta or not -- you can order Quinoa pasta, in shell, macaroni, squiggles, spagetti and linguni shapes. It is made of corn flour and Quinoa (another type of grain). Tastes virtually the same as real pasta, though I can taste a difference, she can't. Has a lot of protein in the grain itself and, in our case, did not spike blood sugar. I did not give a combo bolus for this. I have also tried the frozen WW or Lean Cuisine Lasagnas with 80/20 upfront and a 1.5 hour combo bolus and it works. Whereas for homemade ziti or lasagna combo bolus won't work, still goes high. Thinking because WW and Lean greatly overcook the pasta, pasta is far, far from al dente. But she loves the lasagna anyway. P.S. I have tried the Tinkyada pastas and she goes quite high sometimes afterwards but Quinoa works like a charm.

Major Bedhead said...

Oooh, Penny, you're good. Way to stay calm. I think I would have ripped her a new one, even with the heads up from the teacher.

Miss B probably had a great-aunt who's stepfather's second cousin twice removed had type 2, which, as we all know, makes Miss B the authority on type 1 as well. Far more of an authority than you. Ugh. People like that make me want to scream.

Penny said...

Carey,

The mental image I have of you snapping the nurse with a tongue depressor made my day.

Caro,

I know that the dentist meant well. I know she was just trying to assess Riley's risk for dental complications and all. But, the way she phrased the question makes it really hard to answer.

George,

Sorry I couldn't help you out with the head tearing thing. I was trying to avoid jail. I hear it is not a nice place.

Chrissy,

Funny that you picked up on the Miss B thing. Actually the principle doesn't have a "B" in her name at all. Only in her attitude.

Lori,

That's what gets to me the most is other people thinking they know more about a disease that we live with 24/7.

Anon,

Thank you for the information about the pasta.

Julia,

Yes, she probably knows someone who knows someone who has Type 2. Also, I didn't write this in my post, but apparently Miss B is hypoglycemic. So, she told Mrs. W that she knows how Riley feels.

Ugh. If she would have brought that up in the meeting I probably would be in jail right now.

Holden said I should take one of Riley's sets in the meeting and if she said she knew how Riley felt I should whip it out and put the site in her. Then, tell her I'd be back in 3 days to do it again. That way she'd have more of an understanding of how he feels.

She has no idea how my child feels. I live this disease with him 24/7 and I don't even know how my child feels.

Cheri said...

Good for you! I haven't read your blog in forever, due to my own busy schedule w/ 4 kids & my own classes. (studying to be an RN) But I had to read back about this event that I had missed! You handled this very very well! I give you credit for dealing w/ it so well, I think I would have floored the woman! I can't believe she would try to make such serious decisions about your child's health!
I, too, know nothing about this disease other than what we have touched on in classes, or what I have read here.....my heart goes out to you and your family, as always!