What Parents of Children with Diabetes Wish You knew…

parents of children with diabetes

Have you read the blog post “What Everyone with Diabetes wishes you knew“? Go and read it if you haven’t. Bring tissues.  After I wiped away the tears, I began to think about “what parents of children with diabetes wish you knew.”  Some of us don’t have diabetes ourselves but we still have very strong feelings about the issue.  As parents of people with diabetes, we have things that we wish our children knew.  There are also things that we wish that the general public knew.

Parents of children with diabetes wish that the our children with diabetes knew that….

time together

We would take this disease from them in a heartbeat…a heartbeat.

With every tear that they shed,  we have privately cried  a hundred more… We didn’t want you to see how much it hurts us to hurt you.  We told you that we do this to keep you healthy and alive (and we do) but it kills us too.

No matter how old you are, we still want to “make it better”. Seriously.  Still.

We know that you can handle it.  We just wish that you didn’t have to…As parents of children with diabetes, when we were completely responsible for your care, we got tired and wanted a break. We understand that you, as the person with diabetes must feel the same way at times. We wish we could carry the burden for you.

Even when we don’t ask you how your readings are, we are still wondering if they are okay…

We know that you are more than a number.  As parents of children with diabetes, we understand that blood glucose levels are only part of the story but we want you to be okay.  We want to know that the readings are okay as well.

We have watched you sleep and cried at all of the holes that we have put into your body just to keep you alive.

Every night that we sat awake waiting for your blood glucose to rise or fall, we did from love and a need to keep you safe.

When we nag at your for not testing, injecting or rotating sites it’s because we want you to have a long and healthy life.  

It’s not that we love the sound of our own voices. It’s not that we think you don’t have a clue. As parents, we know that life happens and people forget. We just want to help.

If you need us to, we will still help you with any care or night testing. 

Ask.  We might be out of practice but we are quick studies. We will help you anyway and any time that we can. It’s just what parents do.

Even if you aren’t my child and you live with diabetes, I wish I could take it from you.  

Honestly,  I wish I could help you carry that burden for a week and let you breathe.  I have told you this before and I mean it. I don’t care how old you are.  You are someone’s child with diabetes.  You carry the same burden as my own child.  It still kills me.

I wish you didn’t have to carry so much “gear” with you when you go out.  

I wish you knew the luxury of just grabbing your wallet and keys and heading out the door without concern for insulin, pump, glucometer and glucose tablets.

We wish for a cure too.

Until it arrives, we will work with you to have the best care, the best knowledge and the best tools that we can afford.

As parents of people with diabetes, we wish that the general public really understood that…

insulin pump tattoo

Type 1  is not the same as type 2 diabetes.  

Each disease has its own challenges and issues.

We did not cause our children to develop diabetes.  

Seriously, we carry enough guilt about not protecting our children from an invisible disease.  Your added blame is not required.

It is okay for our children to have treats now and again, the same as your children do.

No child–or adult should live on junk food but a cupcake now and again will just brighten someone’s day…or raise a falling blood glucose level.

Insulin is not a cure.

It just keeps my son alive…and can kill him. It is a carefully managed tool that he must use at all times.

An insulin pump is not a cure either. 

An insulin pump is an expensive tool that not everyone can afford.  Even for those lucky enough to be able to use one, there is still much work to be done to be safe and healthy.

Diabetes is expensive.

 Let me repeat this….diabetes is EXPENSIVE. There are many great advances in diabetes care but they are only available to those with excellent insurance or deep pockets.  The cost of diabetes supplies can range from the equivalent of a car payment or mortgage payment each month. Again, that is just for a person with diabetes to stay alive.

I look tired because I don’t sleep at night.  

After years of worrying about my son’s blood glucose levels and testing him numerous times per night–well I still wake up. I still worry about what his readings are. I still don’t sleep properly

Worrying isn’t about being an overprotective helicopter parent or because I have nothing better to do with my time.

 I worry because diabetes is deadly.  Errors in insulin, errors in tools or simply changes in activity levels can have lethal consequences for people with diabetes.  This isn’t just talk. This is real.  I have lost friends to this disease.  Parents of children with diabetes have seen their children die because of diabetes. Diabetes kills. It is a scary disease.

As a parent of a child with diabetes, I hope both my child and the general public know that I will continue to work hard every day to improve the lives of people with diabetes. I will offer a helping hand, a strong shoulder or the voice of experience where necessary. I will continue to dream of a day when we can say that we are parents of children cured of diabetes.

The Bad Kind

The other day, I sat down to begin reading Ginger Vieira’s new book “Dealing with Diabetes Burn-out“.  I had only read the introduction when I wanted to cry.  Why is there so much judgement surrounding diabetes? Why do people living with diabetes feel that they are either good or bad? Well, as Ginger points out, its because there is so much good and bad mentioned when talking about the disease.

Your readings are good or bad.  They are not the result of a carb counting error or a pending illness that you cannot foresee. They are a good reading or a bad one.  The food you eat is either good food or its bad and a diabetic shouldn’t eat it.  Your A1c when you see the doctor is either good or bad.

The constant judgement does not end there. I was listening to a conversation a few weeks ago and quietly cringed as I heard someone mention that a person had diabetes “really bad”.  Another person had mentioned that someone had died because they had the “bad kind of diabetes”.  I wanted to say that there is no good kind!  You can only hope and pray that a person with diabetes has all of the knowledge, supports and tools that they need to care for themselves in the best possible way.  It wasn’t my place to educate at that time.

The good kind I assume, is the kind that is managed by diet and exercise  but is it really that good? You still have to live with guilt for each piece of food that enters your mouth.  You must be constantly wondering when that bullet will hit its target and you will get the dreaded sentence–“You have the bad kind of diabetes”.

What is the “bad kind of diabetes”? Is it when you have to have needles? Is it when you are on pills? Is it when you are overweight? Is it when you are two and don’t know why you have to be stabbed and poked at all of the time? Is it when you have to be hooked up to a machine 24/7? When does it become “bad”?

Personally, it is always bad.  In all of those cases, our bodies have rebelled against us and are not working as they should.  We have to fight and struggle to compensate. Using insulin actually can make it easier not worse. Modern insulins allow people with diabetes to be able to match insulin to food amounts in a way that their body, without insulin, can’t.  That’s not such a bad thing. It allows them to have that piece of chocolate cake without concern of a crazy high a few hours later.

This distinction between “good and bad” actually has a negative impact on treatment as well. While insulin injections or insulin pumps are not an option for a person living with Type 1 diabetes, it is often seen as a last resort for a person with Type 2 diabetes.  Sadly this is not the case.  Studies have shown that giving a person with Type 2 diabetes insulin earlier can actually preserve some of their beta cell functioning and make their lives a little easier.  Unfortunately, that “good and bad”  issue stops that from happening. People fear that they will be “bad” if they are on insulin.  This further translates to the thought that  those who live with Type 1 diabetes and need an external source of insulin to keep them alive must have it “really bad”.

I thought about other diseases and wondered if any others have it “bad”.  Cancer has stages.  Diseases like MS are referred to has having “full blown MS” versus the early stages.  I could not think of any other disease that allows people to have the “good kind” or the “bad kind”.  Is it the lifestyle component but if it is why do we not hold that same standard for other “life style” related diseases? Is it because in the other diseases they understand that lifestyle is only a small component? People will say that Type 1 diabetes is NOT a lifestyle related disease but that does not stop the public from blaming the lifestyle of the mother of a person with diabetes.  We are blamed for things like not breastfeeding long enough and other equally ridiculous notions.

What is the answer? How do we fix this? I don’t think that there is a quick fix.  I think that we continue as we have been. We educate people who ask us if we have the “bad kind of diabetes”.  We work with the media when they try to get it right. We are kind but firm with those people who are ignorant of the facts because we may have once been ignorant as well. Finally, we find a cure so that no one ever again has to be judged because their body has failed them.

blame

Things to Remember when Sending a Child with Diabetes to School

back to school with diabetesIt’s that time of year again, the time that many parents look forward to and most parents of children with diabetes both anticipate and dread—Back To School!

For a parent, this is a time when we look forward to the return to routine, early mornings and school lunches.  We stare in shock at the number of clothes that no longer fit our offspring and cringe at the many new outfits and shoes that they require for the upcoming school year.

As parents of children with diabetes, we also begin to worry—will our children with diabetes be safe at school? Will our schools allow testing and injecting in the classroom? Will our children’s teachers understand the very real cognitive impairment that comes with highs and lows? Will someone use glucagon on our child if it is needed? Will our older children test and bolus around their peers? And the list of fears go on and on.

To help alleviate some of those fears, I asked parents to give me their top tips for sending a child with diabetes back to school.   I have since put them all together and have come up with the most important points to remember when sending a child with diabetes back to school…

Keep calm and be strong!   You are your child’s advocate.  You are your child’s protector but remember that most educators also love children.  They know how important your child is and will do as much as they can to help you and your child to feel safe in the classroom.

Do not go into meetings in attack mode. Remember to be calm, rational and offer credible arguments to any opposition to your requests. Often your school personnel know little or nothing about diabetes care.  Remember that you once were probably just as ignorant so be patient, educate and be willing to make compromises where it is reasonable.  You also have every right to stand your ground when the alternative will put your child in harm’s way.

Empower your child.  You cannot go to school every day with your child. (I tried once but the teacher kicked me out) It is therefore important that your child be aware of his/her rights and their responsibilities when it comes to diabetes care.

Ensure that your child knows what to do when a teacher impedes them looking after themselves (stops them from finishing their lunch, using the washroom when high, or having access to water for example).  If your child is responsible enough, he/she may carry their supplies with them at all times so that they have access to them in all classrooms and in the event of a lock-down.

Create and present a diabetes care plan or 504 plan for your child.  If you live in the United States and your child attends a publicly funded school, it is important that you put in place a 504 Plan which outlines the roles and responsibilities of the parents, student, and school. Sample plans can be found at www.childrenwithdiabetes.com as well as the ADA website, www.diabetes.org

If you live in a country (like Canada), without such laws to protect your child with diabetes in school, you may still create a care plan.  Often school boards will have their own plans that you can fill out or you can work with many online templates to create your own.

In either case, it is important that you outline the level of care required for your child, the accommodations that need to be made during exams for high or low bg levels, missed school because of diabetes related appointments, how to handle parties or events at school, what to do about school field trips, after school sports activities and more.  This document should note what is expected from the parents (ie. They will ensure that there are adequate supplies in the classroom), the student (ie. he/she will test before exams), and the teacher (ie.  The student will be supervised when low until back in range)

Educate, Educate, and provide information.  Take the time to set up a meeting with all staff who will be interacting with your child.  Ensure that they know what diabetes is as well as the signs and symptoms of highs and lows in your child.

Share a detailed booklet of diabetes care information for your child’s homeroom teacher.  Provide information on your child’s testing and injecting schedule, general information on the insulin pump and errors that could occur if your child is pumping, ensure that your emergency contact information is highlighted and easily available. Make sure that everyone is aware of policies on eating in the classroom or on the bus as well as whether the school will have someone trained to administer glucagon in an emergency situation.

Provide posters or flash cards that can be placed in the staff room as well as the classroom noting the signs and symptoms of highs and lows.  You may also wish a picture of your child posted in the staff room so that all staff are aware of your child and will not rush them out of a lunchroom or penalize them for being in a hall to get water when high.

Finally, if your child is willing, go into the classroom and present information to the students on diabetes and diabetes care. Knowledge is power.  When children learn to understand the realities of diabetes, they are often your best source of support for your child when you are away from them.

Be a Teacher’s Pet!  If you have the ability, volunteer with your child’s school.  Make yourself and your child visible to the staff. Help out at events or volunteer to chaperon field trips.  This can allow the staff to better know you and understand your concerns.  This can also help you to come to know the staff and feel safer about leaving your child when you aren’t around.

If you are not able to be at the school, reward good behavior! Remember to thank your child’s teacher for a job well done.  Provide thoughtful gifts at Christmas and year end to let them know you appreciate all they do when you are not around.

Don’t forget your supplies.  Make sure that you have a comprehensive list of supplies to send to school with your child as well as a system in place for refilling items as they are used. An emergency red box may be placed in the classroom with low supplies, syringes, spare test strips and batteries.  Depending on your child’s age, supplies may be left in other rooms, at the office or carried by the child.

Some of the items that you may wish to send to school can include:

  • Free snacks
  • water bottles
  • Spare insulin, test strips, infusion sets, site tape, batteries, syringes, glucometer, ketone strips, juice boxes, granola bars, Handi-snacks, hand wash, alcohol wipes, glucose tablets.
  • Spare clothes for younger children who may have bladder control issues when high
  • Cell phone to contact you if they are unsure of what to do with their care if an office phone is not readily accessible.

Send notes.  Make sure that you keep an open line of communication between yourself and your child’s teacher(s).  This can be done through emails or notes left in the child’s daily school planner.

Attach sticky notes to your child’s food noting the carb counts or exchanges on each item. This can help to ensure proper insulin to carbohydrate/food dosing for children of all ages.

Managing gym class.  Physical activity is important for everyone but it is especially important for people living with diabetes.  It is important for gym teachers to know that diabetes should not stop our children from taking part in events.  Your child should know to test before he/she starts any physical activity. Make sure that everyone knows the range that it is safe for your child to exercise in.  If your child is on a pump, you may wish to set a special “gym day” profile to reduce basal rates or perhaps you simply want to give the child 10 grams of carbohydrates before class to help them maintain their bg level during activity.

My final tip is the most important…Relax and have fun! School should be a time of fun, education, and friendships.  Diabetes can sometimes interfere and make things a challenge but do not let it stand in your way.  Remember that our children are children first and children with diabetes second.  Help them to learn to live with diabetes in the most positive way.  Work with staff in your child’s school so that everyone is comfortable and your child can get the very best out of their school year.

If you have a tip that I missed, please let me know! 

Diabetes still isn’t sexy!

Happy Canada to all!! Here is one of my favorite posts inspired by a great parent of a child with diabetes….

October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way. 

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.
October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way. 

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.