When your child is first diagnosed with diabetes, you are overwhelmed with emotion. As time goes on, the questions on how to parent a child with diabetes never seem to end.
You will quickly learn that there is never one right way to do things. Diabetes is as individual as the person who has it but there are a few things that we hope will help you on your journey as a parent of a child with diabetes.
Four tips to remember for parents of newly diagnosed children with diabetes
1. Live with life 4 hours at a time
First and foremost, live your life four hours at a time. Do not worry about six hours from now. Do not worry about tomorrow. Live life in four-hour time slots–nothing more.
Chances are high that your child is using a rapid-acting insulin. This type of insulin basically lasts for only four hours.
Look at the readings inside the four-hour window. Make note of the food that was eaten and the activities in that four-hour period.
If you see a reading that is in range for that four hour period give yourself a high-five! You did fabulously!
If you see something out of range during that four hours then begin to problem solve. What can you learn? Did you learn that your child is producing a small amount of insulin now and doesn’t need as much insulin for that food at the moment? Did you learn that not all slices of bread are the same number of carbohydrates and perhaps you made a carb counting error? Could it be that hockey practice before supper changes the amount of food and insulin your child needs?
2. Find a support system
Find a support system and use it! Let parents, partners, friends, and people from support groups (online and in real life) help.
Share with them, unload on them, and again…use them. Some people will “get it” more than others and that is okay but find a way to lean on even those who may not get it but are willing to learn, listen or take over for even an hour. You deserve the break. You cannot be the very best external pancreas that you can be without a break and finding an outlet. It is okay to ask for help or even see a counselor. Many families with diabetes have to turn to someone along the way.
3. It is okay to cry
Cry in the shower. Go ahead! Stand in that shower and let it all out. Let go of the big girl/boy pants, crumble and let that strong shell crack for just a little while.
Allow yourself to feel the pain and frustration that comes from a diagnosis of diabetes for your child. It is okay to feel the anger and hurt. Allow yourself to grieve while the water washes away a bit of the pain so that you can be strong again once you step back into the real world.
4. It is okay to discipline your child for diabetes related tasks
Do not allow your own guilt to get in the way when disciplining your child with diabetes. According to experts like Joe Solowiejczyk, it is perfectly acceptable to punish your child for not keeping up with their age-appropriate diabetes chores. You would expect them to brush their teeth, you can therefore expect them to check their blood sugars or bolus (again if age appropriate).
Heading back to school
Sending your child with diabetes back to school can be stressful but with a little bit of planning it can be an enjoyable experience for everyone.
First, take a moment to familiarize yourself with school policies regarding diabetes care. If you live in the USA, you should have a 504 Plan in place. It outlines the quality of care and responsibilities legally required by the school. If you live in Canada you will need to check out the legislation in your province or school board for direction.
Get more information and tips for heading back to school on the Back to School page.
If you live in the United States of America and are sending your child with diabetes to a publicly funded school, you should have a 504 plan in place. According to Crystal Jackson of the American Diabetes Association, “schools typically respond to news of a student’s diagnosis by requesting a copy of the doctor’s orders for the child or the child’s diabetes medical management plan (DMMP), a document that outlines not only doctor’s orders concerning diabetes management but also other school-relevant issues, including how skilled the child is with blood sugar checks and other care tasks.” She further reminds parents to check to see if their school has its own health forms that need to be completed by your child’s diabetes team.
Whether your child is newly diagnosed or returning to school for another year, you have a right to request a 504 plan. A plan will spell out the school’s responsibilities for helping your child manage his/her diabetes care during the school day. To do this, send a formal request to the school principal or designated 504 coordinator.
Once the meeting is set, you will have to draw up your own 504 plan. There are many templates available online including ones from www.childrenwithdiabetes.com
What to include in a 504 Plan
- Providing for extra snack times
- Allowing extra time to finish a test when class time was missed because of taking care of a diabetes-related task
- Checking blood glucose levels before and during exams
- Not being penalized for diabetes-related absences
- Specific locations for blood glucose checking and insulin injection(allowing the child to check/inject in the classroom if he/she prefers)
- Having a buddy system in place to ensure that the child never goes to the nurse’s office alone
- Specific guidelines on who will train staff on diabetes care, insulin and glucagon use
- Information on how supervisions for field trips will be addressed
- Guidelines for handling school parties and snacks
- Information on dealing with diabetes and supply teachers
- Other age-appropriate accommodations like carb counting and assistance interpreting blood glucose readings for younger children
- Juice or glucose tablets should always be wherever your child is
- Check blood glucose levels before intense physical activity
- The range in which your child can participate in physical activities. Note when your child is too high to participate and what you consider too low to be active.
- Unrestricted access to water and washrooms
- A time to speak to fellow classmates about living with diabetes and what they need to know to best help their fellow student
Dealing with big insulin changes in your child
As our children with diabetes grow, their insulin needs change. When you are used to making tiny changes to doses, the first time you must make a big change in your child’s insulin dose can be terrifying!
As children grow, their appetites change. Their activity levels are also different. This means that their need for insulin also will change. It doesn’t mean that their diabetes is getting better or worse. It is simply a part of the changes that life brings.
As they grow, and as they settle into life with type 1 diabetes, it is important to always remember that there is no one-size-fits-all insulin routine. The type of insulin used, the method of insulin delivery, and the schedule of injections are all individual. You must constantly work with your diabetes team to make adjustments as your child grows.
Hormones will happen. Illnesses will create havoc. Routines and schedules will become disrupted. Watch for patterns. Reach out for help. Use the best tools available to you and make them work.
Teens with diabetes
The teen years present many challenges for both parents and teens with diabetes. That is why we have created an entire page and ebooklet dedicated to this incredible group of people!
An insulin pump is not a cure but a method of insulin delivery. It is a small pager-like device that mechanically pumps set amounts of rapid-acting insulin into a person’s body.
Insulin pumps require you to set “basal rates”–a rate of background insulin that is always present, and the calculation of insulin to food ratios, or bolus amounts, that are used whenever food is eaten.
Learn about the various types of insulin pump available below.
Does my child need an insulin pump?
As a parent of a child with diabetes, you may see the many individuals promoting the benefits of an insulin pump. This may make you wonder if your child needs ones as well.
Choosing an insulin pump is a very personal thing. Every person with diabetes is different as are their needs. Some children enjoy the freedom of wearing an insulin pump, while others don’t like to have something attached to them at all times.
It is important that you look at the pros and cons of insulin pumps before you invest the time and money in insulin pump therapy.
You can read about some of the pros and cons in the article below.
How do I choose which insulin pump is right for my child?
There are a number of insulin pumps on the market. If you decide that an insulin pump is right for your child, the next steps will be finding one that fits your child’s needs. You will have to consider things like how much insulin does your child use each day and whether or not you plan to use a continuous glucose monitor.
Learn more about shopping for an insulin pump in the article below.
Continuous Glucose Monitors for Children
A Continuous Glucose Monitor is a small device worn under the skin that uses interstitial fluid to monitor blood glucose levels. It then transmits readings to a receiver and allows a person with diabetes to have a guide to what blood glucose levels may be at a given time and whether they are expected to rise or fall in the near future.
Learn about the different types of Continuous Glucose Monitors by clicking the button below.
Does my child need to wear a Continuous Glucose monitor?
Once again as a parent of a child with diabetes, you may wonder if your child has to wear a continuous glucose monitor.
As we said before, deciding whether or not to use a Continuous Glucose Monitor (or CGM) for your child is again a very personal decision. Some parents fear their children going low. A CGM provides them with peace of mind. Some children, however, do not like to have to wear something on their body. The financial burden can also be too much for some parents of child with diabetes.
You can learn more about the pros and cons of a CGM in this article.
Will my child wake up from a low blood sugar?
There are two fears that I hear from parents of children with diabetes all of the time. The first is that their child will never properly look after their care. The second is that their child with diabetes will never learn to wake up from a low blood sugar. Both of these are real concerns.
If our kids don’t “get it” and begin to take their diabetes care seriously, they could end up with complications or worse. We fear them landing in a coma because they haven’t taken their insulin. We are terrified that they will take their insulin without checking a blood glucose level and drop dangerously low with no one around to help them.
Our children think that it won’t happen to them. As parents, some of us see a damaged blood vessel with every high blood sugar. We have seen our worst fears happen to others and know that it can happen to our children as well. We are terrified for the safety of our babies.
Dead in Bed Syndrome
Dead in bed syndrome is real. We have had friends who have put their children to bed, only to have them not wake up.
It is important to remember however that a child’s response to low blood sugar levels in their sleep can change with time. When children with diabetes are younger, they often feel safe in knowing that their parents will keep them safe at night. As they age, they do become more conscious of the need to wake up.
Managing holidays with diabetes
Many holidays and events have a large food component that can be stressful for parents of children with diabetes. How can you keep their blood glucose levels in check while allowing them to indulge in a variety of tasty treats?
It isn’t always easy but is doable with some planning!
Consider some of the following options:
- Bring a dish of your own so that you know the nutritional value.
- Ask for information on what is being served ahead of time.
- Choose more fruits and fresh vegetables over cookies and chips.
- Go for a walk after a large family meal.
- Speak to your diabetes team ahead of time about adding more insulin for larger meals.
- Make sure to check blood sugar levels often.
Dealing with the emotions
When your child lies to you
We all know that our children are most likely going to lie to us at one point. They may tell you that they checked their blood sugars when they didn’t. They might say that they bolused for that food but didn’t. Remember that it is okay to punish them for lying, but it is equally as important to understand why this happened.
Your child may be experiencing fatigue or they may want to be more like their friends. Make sure to take the time to investigate what is really going on. See if there is some way for both of you to give a little and come to a compromise.
If the issue continues, consider reaching out to your diabetes team for more help.
Allowing your child with diabetes to fail
When you are a parent of a child with diabetes, one the biggest challenges can be standing back and allowing them to fail. I don’t mean allowing them to become critically ill, but allowing them to calculate their own carbs and make their own corrections especially when they are not around you. Allowing your child with diabetes to make their own judgement calls and get it wrong can be heart-wrenching. You want to fix it and make it right, but your child wants to stretch and figure things out on their own.
The best advice I received was to simply be there for them. A doctor once told me to step back and let my child fall. I was to be there to pick him up, to help, to push. I now tell others to do the same.
Handling the guilt
As parents of children with diabetes, we may feel guilty. It is the parent’s job to protect the child. We often feel that we have failed them.
We see our children with diabetes managing their care 24/7 and we feel guilty when they are away from us and we get a break.
While those feelings are valid and real, they don’t help anyone. We must remember that everyone has something to deal with. Diabetes is what we are facing. everyone has something to deal with.
There are times that you won’t want to get up to deal with an out of range blood sugar. You won’t want to argue about another injection. You will do it however. You know the consequences of not doing it. Hopefully this will also give you more compassion for those days when your child is also done.
On those days when you get a break, embrace it! You are giving your child a break each day just by being their to help.
Books for a parent of a child with diabetes
Kids First Diabetes Second
Leighann Calentine’s book Kids First Diabetes Second is a great read for parents of children with diabetes. She offers sage advice from a nurse who told her that she needs to give her daughter choices, but taking care of diabetes is never a choice.
Throughout Kids First Diabetes Second are a series of short essays from many diabetes “experts”. Reading testimonies from those who have “been there, done that” was wonderful. It gave a perspective from parents who have journeyed where you have yet to tread, adults who have lived the lives of our children, and more. These snippets truly rounded out a very good diabetes resource.
The path to letting go
One day your child with diabetes will become an adult and will be in charge of their own care. While that day can be a terrifying thought to many, the transition can be made easier if you begin with baby steps.
Allowing our children with diabetes to have more freedom and gently (or not so gently) pushing them to care more for themselves has many repercussions. It’s great for them to be able to “do it” without a parent hovering over them. This fosters a sense of independence.
While they are growing and living at home, it is also the perfect time for them to make mistakes. Parents are nearby to help fix the errors and provide some guidance. This transition can also make you feel a bit guilty, but there is no reason for it.
Am I pushing my child with diabetes too hard?
It can be a challenge know exactly how much to expect from your child with diabetes. I was once told that diabetes care should be looked at the same as their chores. If my child is expected to brush his teeth, he should be expected to check his blood sugars for example.
A two-year-old cannot be expected to manage the same tasks as a twelve-year-old. The twelve-year-old would not manage the same things as the child who is 16. Thankfully we have been able to find some information on age appropriate tasks and have them all in one free booklet.
Am I neglecting my child without diabetes?
We often worry about our other children who do not have diabetes. It is important to make time for them as well. While they may enjoy taking part in many diabetes events, ensure that they also take part in things that are just for siblings of children with diabetes.
You can also make special one on one time for your other child(children). Set up dates with them and listen to their concerns.
Diabetes and Depression
Diabetes is a challenge for both parent and child. Both can experience depression and burnout. It is therefore important to keep the lines of communication open. Many diabetes teams have a social worker available to the family which can be helpful.
If you or your child are experiencing distress or depression, please reach out for professional help.
We need your input
Let us know what other supports you need as a parent of a child with diabetes by sending us an email.