"Can you eat that?"
"I could never give myself shots!"
And one even, "he's so young!" Along with an onset of tears. I don't mean to be insensitive, I mean, it's nice that people care, truly. But Max isn't dying. I couldn't help but feel a little rankled when I heard the last one.
We aren't that far into this but already I am learning the "do's and don'ts" as far as the rules of etiquette goes with Diabetes. Not too long ago, I was the same way and I don't blame anyone for not understanding what they don't have--how could they? But at the same time, I think what diabetics feel frustrated with is the lack of sensitivity to the questions they get from people. Think before you ask. Better yet, just Google it.
I think the biggest thing right now that I'm struggling with is how adults treat kids with diabetes. When Max laughed about a mistake that we made once with Max's medications, his teacher immediately reprimanded him with, "You aren't taking this very seriously! Don't you know how serious this is??"
Ugh. That question merited an email from me that they get to read come Monday morning. They brought it on themselves.
Here it is:
(To all teachers that work with Max:)
Hi (teacher's name),
Seeing that Max will be starting school full time next week, I have a list of rules that Max understands that he is supposed to follow regarding his health, as well as some guidelines to pass on for others to please follow regarding Max. If you could please pass this onto his teachers, I would appreciate it. Thanks!
Max's "rules"
1. In between meals, Max understands that he can have only low carb snacks. This means anything 15 grams and under. Ideally, it should be no more than 5 grams but it's not a huge deal if it goes slightly over. He is very good at following these rules and so far, hasn't tried to "cheat."
2. Max understands that if he has not had insulin, he has to wait to eat any treats (candy or something similar) until he gets home or has permission to go to the nurse to cover the carbs.
3. Max understands that he can eat anything he wants---provided that he has the insulin. If he has pop, he understands it has to be a diet pop. If he has a cookie, that is fine too--as long as he has insulin.
4. Max does understand the seriousness of his diabetes. However, because this has been so overwhelming to all of us, we do laugh about our mistakes sometimes. This is not so much us taking it lightly or not seriously, but because we've learned that this is a learning process, mistakes are going to be made and as long as we have learned from them, we sometimes laugh (depending on what happened.) We have been encouraged by therapists, doctors, nurses and friends (that has diabetes) to really not make diabetes out to be a "disease" and to try to live as normally as possible.
5. Max understands that after he has had insulin, he must finish all his food. (It would be good for the kitchen staff to know that too, and not hurry him along to class.) If he doesn't finish his food, the insulin will be too much and give him a low number.
"Diabetes etiquette" for others to follow out of consideration for Max
1. Please encourage others not to ask Max: "are you supposed to be eating that?" As stated above, he knows what he can and can't eat, and as you can imagine, being asked this a hunderd times a day can become annoying and exhausting, even if it is well intentioned.
2. "You need to take this seriously." We have heard people say this to Max quite often, mainly by adults. Again, we are teaching Max to take this very seriously and he does. But because he is experiencing so much anxiety, we are trying not to constantly talk about diabetes. And it's ok to even make the occasional joke about it, to relieve stress.
3. "Doesn't that snack have carbs in it??" This goes with #1. Some snacks do have a few carbs in it. The rule of thumb (per the doctor) is that as long as you aren't eating an entire platter of low-carb snacks, it is fine to have a snack with a few carbs.
4. "Are you afraid you're going to die/seizure/go into a coma?" I think this is self-explanatory!
5. "That's gross." Please encourage students to look the other way if they are sensitive to seeing Max test his blood, get injections, ect. I am speaking mainly for any sort of field trips or any out of the ordinary situations where Max may need to check his blood sugar out in the open. I know it will be done mainly in the nurses office.
6. "I have diabetes type 2, it's the same thing". No it's not! While both types of diabetes is terrible, I hate it when one person compares one suffering to another. Let's just all agree that diabetes is the pits.
7. "Shouldn't you be fat to have diabetes?" This is usually type 2, but even then, we shouldn't stereo type.
8. This is a little off-subject, but if you have treats to pass out in class, please do not disclude Max. This just would make him feel singled out and embarrassed. He understands that he has to wait to eat. HOWEVER, if you see him start to eat it, just give a simple reminder to wait to eat--please don't shout or yell anything that would embarrass him. If he should eat it before you get a chance to stop him, it's not a huge deal!! Better a bit high than too low. Please just shoot me an email and send him to the nurse for an insulin shot..
Yep, they brought it on themselves. Mama Bear can only take so much before she breaks out of her cage.
I hope they read it and I hope they understand where I am coming from. Yes, it is very important to keep Max safe. But I think even more important is his quality of life. Let him get back to his life. Let him get back to normal! Don't pity him but at the same time, don't undermine the seriousness of this illness by saying dumb things like, "All you have to do is take shots, right?" Never ask a question of any chronic illness starting with "All you have to do..." Chronic illnesses are forever; that's what makes it difficult.
But at the same time, don't constantly play the "food police". Max knows what he can and can't eat. And if he doesn't, he's good about asking.
If he gets a high number, we say, "hmmm. I wonder what brought that on? Oh well, here's some insulin." Truly. That is it is. Because sometimes numbers will shoot up and sometimes they will come crashing down.
If we make a mistake, we say "It's ok" and we forgive ourselves. We don't blow it off. It's not that we don't understand the seriousness of our mistake, it's that we will continue to beat ourselves up over it and that affects OUR quality of life too.
I want to get back to normal. I feel like things are slowly getting back to normal too. We can talk about other things than just diabetes. We are getting faster and better with planning meals. We are eager to go to Max's first Endo appointment so they can see his numbers and see how he's doing. We are eager to learn more. But we're also eager to keep moving on with our lives. That's what God wants us to do.
I found a video of a girl that documents her life with diabetes. This particular video isn't the best quality, but apparently, she was "having a low" when she recorded this and probably didn't even realize it (the quality of the video, I mean. She did know that she was having a low.) I watched both in awe and fear as she kept talking through her video and then interrupted herself every so often by saying, "I'm having a low number right now, look at me, I'm shaking" and then kept talking!! I wanted to shout, "Go eat something NOW, you can record yourself later!!"
But at the same time, I couldnt' help admiring how calm and cool and how in control she was. I was thinking, will that be Max soon? Pushing his lows (I hope not!) but at the same time, not freaking out about it? (I hope so!)
Dear teachers and adults that work with Max, there has to be a balance of reasonable caution, education, but also humor and joy to have a good quality of life. And just with any disability or illness, we have no right to constantly remind a person of their limitations.
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