What not to say to your children who have diabetes...

Introduction

I started to write this note of "advice" as an attempt to accomplish two goals:

1) To prevent the rebellion that occurs in many children who have diabetes.

2) To give advice to maintain a healthy relationship with your children.

There are many diabetics who have had falling outs with their parents or who resent certain aspects of their childhood because of the way their diabetes was treated. I asked the Insulin Pumper’s list (see http://www.insulin-pumpers.org) for individual's feelings on the subject and this is the advice gleamed from those responses. Many replied that despite their age (anywhere from 65 to 20), that they still received these types of comments or attitudes. That means that this list is not just applicable to how to treat your children, but also how to treat your spouse, your friends, or your adult "children." My name is Susan Fisher, and I was diagnosed at six years old. I hope you find it useful!

 

The Advice

"Do not punish them for anything relating to their diabetes. It makes it seem even more unfair. I used to get punished for sneaking sweets, forgetting my diabetic paraphernalia when going on a trip, or forgetting my snack at school or to take a shot at home. It just made it so much harder."

[During a low blood sugar when caught without any sugar on hand]

"... Dad was angry at me, getting revved up and going on about how I need to look after myself, and either do everything right, or not worry at all. I got mad back - I'm doing the best I can and accidents/mistakes do happen. Nobody can be perfect all the time, if any of the time, and I don't need anyone telling me I should never get caught out.

So there's my gripe - be aware that accidents do happen, and give them a break when it happens."

There is no such thing as a perfect diabetic. How many "perfect" diabetics have had days of unexplainable high or low blood sugars? Millions. The body is too complex to explain at times. We've all had our days when we have an unexplained low and are caught off guard without having sugar. We've also all had days where we misplace or leave behind our cell phone, briefcase, favorite hat or purse. It is no different when a child simply forgets one day to take dex tabs or their meter to school. How many times have they remembered to take it?

Habitual problems are another story. The important thing is to make sure the consequences of poor diabetes choices fits the "crime" and educate the child on the correct choice. Example: when one list member’s daughter first started pumping, she missed a bolus every now and then - then after a couple of months got very complacent about doing boluses at all. So her "consequence" was that for a week, she couldn't eat snacks unless her parents "heard the beeps" - a real hassle for a kid tasting her freedom. After the consequence, she was then on her own again. It took 2 weeks (separated by a couple of weeks) before the message was truly learned, and since then, her mom doesn’t think she's ever forgotten a bolus. Yelling, or hitting, doesn't teach a lesson.

 

"My father has not talked to me in over 7yrs because I have diabetes and one night when I was asleep on his couch I had a pretty bad reaction. Well I ended up cussing him and slinging my arms..."

"... my father seems to think that I couldn't be part of him because I am not perfect and my brother and sister are - at least they don't have a disease."

Diabetics cannot always be held accountable for their actions when having a low blood sugar. Harsh words can sting, and although it is difficult, you must remember that diabetics are not in a sound mental state when they are low. They may say or do things and have no recollection hours later. Black eyes from flailing arms are sometimes easier to forgive than words said - just try to remember though that the same mental state that caused your loved one to sock you is the same mental state that brought the harsh words. Neither would happen if the diabetic were in normal range.

As for the second part of that... diabetes is not your fault, diabetes is not your child's fault, diabetes is not a sign of imperfection... if you are uncomfortable with your child's illness (I've seen this a lot in two parent families where one parent carries more of the "load" in diabetes care), try to learn more about it. If you are that parent who carries more of the load, bring your spouse into the picture. Make it a part of her/his daily life to understand what diabetes is and how it affects you and your child's life... Please don't alienate your children over something they have no control over.

 

"My mom told me flat out when I was 12 that if I was going to have treats that I should learn how to compensate for them. That surprised me because I thought I was in for it when she caught me with that Snickers bar. :)"

Above all, this is one of the most important things to teach your child. In simple terms, teach them food = insulin. And that if they ever are hungry or are craving sweets, please just let mom or dad know and we'll see what we can do, but never never sneak food without letting someone know.

 

" Are you low?"

There is no solution to this one. Akin to when women are told "You must be PMS-ing," when they are upset, this comment can only further enrage a diabetic when they are not low. Simply put though, you cannot stop asking it because 75% of the time you will be right! Just be forewarned that diabetics sometimes are a little over-sensitive to this question – and that they CAN be mad WITHOUT being low!

 

" Did you take your insulin?" or "How much did you take?" or "Did you take enough?" and "What is your blood sugar"

There comes a certain point when your child has attained those good numbers, good A1C's, and honestly does not need to be asked this question at every meal. Do you ask your thirteen year old if they brushed their teeth every night? Probably not. This one is not always straightforward. My personal advice is that if it seems your child is annoyed by this question, then strike a deal. "I won't ask as long as you let me look at your sugar sheet once a week/each night/whatever seems appropriate." Or "I won't ask that anymore as long as you tell me when you ARE out of range." Give them a little freedom... this will be the hardest thing you ever do.

 

"Do you have to go to the doctors office with me?"

If your child is seriously bothered by this, try again working a deal. Maybe you can come in at the end of the appointment to ask any questions you might have. Or maybe your child will let you phone the doctor the next day.

Independence is so vital to teenagers - try to compromise.

 

"Are you supposed to eat that?" or even better "You know you're not supposed to eat that."

In the present day of carb counting, there is nothing that you cannot eat at least occasionally. This comment usually comes more from uneducated relatives, co-workers and friends. If you notice anybody saying this to your children, please educate them!

 

"Do not say 'well you better enjoy those pancakes this may be the last time you get to have them' on the morning the child is brought in for a blood glucose test to discover if he/she is diabetic!! This is what my father said 15 years ago and I still wish he had never said it."

"...my family made the bi-yearly trek to visit the grandparents, an eight hour drive at the most. We had to stop every 15 minutes because I really, really had to go to the bathroom. It took us about twelve hours to finally get there. My Mom was very upset with me because I must have drank a lot of water before we left, or else I just wanted to check out every restroom for 400 miles. As soon as we got home my Mom made a doctor's appointment for me. I told her they were just going to make me pee it a cup. Sure enough that was what they did. An hour later they called my Mom at home and told her to bring me right down I was diabetic. Of course my Mom cried and screamed at me..."

Well, obviously if you said or did any of these things to your children pre-diabetic days, it is too late. But it is NEVER too late for an apology.

I don't care if twenty years have past - please apologize!

 

I used to get so mad at my mom when I would get threatened with the old line "It will only hurt a minute" when she was giving me my shots.

"I understand what your going through."

I put these together because they both deal with a "how do you know?" type response... Don’t say it if you don’t know it for a fact. As for the "it will only hurt for a ..." line, I will admit that this line used to drive me crazy as well. But when you are trying to tackle a three year old to give another finger stick or injection, what else are you to say? Just be sensitive to the fact that as your child gets older, he/she may get overly sensitive to these types of comments. Parents that try infusions sets/prick their fingers obtain much respect from their children – "... she DOES know."

A lot of adult diabetics take the second one personally. Do you know what diabetics, especially children and newly diagnosed diabetics, are going through? Do you know what it is like to walk around as a human calculator, constantly counting minutes of exercise, grams of food, units of insulin... Do you know what it is like to live with the fears of complications looming ahead? Diabetes is an utterly complex disease that has many emotional struggles... be sensitive.

 

"As for parental garbage: ‘You can't do that. You're a diabetic.’ Maybe that's why I don't refer to myself that way any more. I'm a person with diabetes. My mother would throw that at me when I would want to go away for a few days, when I wanted to go to college away from home, when I wanted to move to San Francisco when I was 22, when I wanted to have a baby. Nothing made me want to do things more than being told I couldn't do it by my mother."

"I hated the fact I had no independence from my parents whatever I did my mother was right there to be one of the coaches in softball or the girl scout leader of the troop.  I hated being smothered by an over protective parent!!!!!!!!!!!!!!!!!!!!!!!!!!"

I saved one of the most important ones, in my eyes, for last. Two things – the first is that not all people with diabetes like to be referred to as A DIABETIC. It puts the disease before the person. "I am SUSAN, and I happen to have diabetes."

The second vital part to this section: there is no such word as CANNOT. A Diabetic can do ANYTHING – it might take a little more work and effort, but we CAN do it so don’t ever ever say we cannot. Please also watch for this attitude from your child’s doctor. More than one doctor has made sweeping harsh statements about having children or accomplishing athletic goals. They will say directly to a child, you CAN’T. Coming from a doctor, this attitude can be even more devastating to a child.

It is all about attitude. Attitude means never saying you can't, but rather saying, "well, you can do anything, but let's discuss it/look at it together to figure out how." Meaning if a child wants to go on a week long camping trip with friends, don't say no you can't you are diabetic. Say, awesome, it sounds cool... let's talk about how to adjust your insulin, let's meet with so and so's dad and fill him in, etc. Teach them that they CAN do anything, it might be a little more complicated, but they CAN do it - and teach them the skills to figure out how!

Now the other part of the problem... again, letting go. So let’s say your child IS on that camping trip. You’ve found a willing parent that you’ve educated, you are confident in your son’s/daughter’s ability to take care of themselves... but you still cannot sleep at night? Fact of life... write a note to the IP list, call a friend, pray. It’s not easy, but you will get through it. It’s terrifying, but it is also a part of growing up and allowing your kids to be kids. And when your child returns with a smile bigger than Texas, you’ll know that you did the right thing and you will relish the fact that they were able to just be one of the kids... 

 

My personal advice:

Learning to treat and deal with diabetes is a life-long commitment. You will not always be there for your child. Raising a diabetic child means raising someone who knows what it takes to be a healthy diabetic, who knows how to make daily adjustments in basal rates and boluses if necessary, who knows how to handle carb counting, who knows the importance of record taking.

Involve kids as a team effort. Ask them questions. "What do YOU think we should do? Why? How should we handle this?" You are their "certified" diabetes educator and it is up to you to teach them.

One of my biggest regrets is the lack of attention my parents placed on record keeping and tight control. I would be asked nightly "what was it?" and if my response was "400," I would be frowned at, admonished. I would take a supplement to correct the high... but I never looked at the big picture. My blood sugars are two times better when I keep daily records – and even with that incentive I find it difficult to keep on top of it. If you are the type of parent who already keeps extensive records, start involving your child. If your child is unable to keep up (as I am!), do not punish them, but maybe try using incentives. Record keeping and constant, daily attention to blood sugars is something so vital... and maybe if you start young you can engrain a positive attitude and approach in your child.

One last piece of advice (although opinions on this will vary from different people with diabetes) is that if you have a young lady with diabetes in your family, do not let them watch Steel Magnolias alone or without talking about it first (it is a movie about a woman with diabetes having a child and suffering from the complications of diabetes, Julia Roberts/Dolly Parton/lots of big names). Personally this movie did not really affect me, but I have watched others crumble watching it...

God Bless.

 

Advice from Brian Carter, another list member:

1. Let your kids run the show if they are able to.. just sit back and keep tabs on them.

2. Don't threaten them with anything if their numbers go a little Haywire. (only us D’s [Diabetics] know how hard it is).

3. Don't say you know what they are going through.. not other D's know what anyone else is going through.. but we can relate to the problems we all face.

4. DON"T try and scare them with the complications.

5. MOST OF ALL LET THEM BE KIDS!!!!!

 

 


This page has been visited times since February 4, 2001.

Please direct any comments you have to sfisher@cs.unc.edu . I welcome any additions to the list, as well as disagreements with the advice given. In order for this list to be truly useful, it has to apply to all diabetics. So if you disagree or have something to say, tell me! Thanks, Susan Fisher.

Copyright (c) 1999, Susan Marie Fisher sfisher@cs.unc.edu Permission to use, copy, distribute this document for any purpose is hereby granted, provided that the author's / editor's name and this notice appear in all copies and/or supporting documents; and that an unmodified version of this document is made freely available. This document is distributed in the hope that it will be useful, but WITHOUT ANY WARRANTY, either expressed or implied. While every effort has been taken to ensure the accuracy of the information documented herein, the author / editor / maintainer assumes NO RESPONSIBILITY for any errors, or for any damages, direct or consequential, as a result of the use of the information documented herein.
 
 
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