Diabetes Management at School: Valuable Lessons on Diabetes Care from Two Countries.
When your child has diabetes, sending them to school is one of the hardest and scariest things you can do. Can you trust they will be looked after and safe? If their blood sugar goes low or high, will someone help manage their blood sugar?
For parents, there are many steps you can take to lower the stress and ensure that your child is safe. Below are valuable lessons learned from starting first grade in the U.S.A. and then moving to Denmark and transitioning to a new and very different school system.
Our younger daughter was diagnosed with Type 1 at age four, when we lived in Laguna Beach, California. Just after her diagnosis, she was to begin first grade. Managing her diabetes while at school changed from normal nervousness to a higher level of anxiety.
There were so many questions and scenarios that it was difficult not to feel overwhelmed. We wanted our daughter to feel as if she was just like any other kid starting first grade. All of our concerns, worries, and plans had to remain in the background.
We never wanted her diabetes to define her and change how she faced the world. Our job was to manage everything so she could just be a kid. Luckily the school was there to help us.
We were fortunate to live in a small city with a well-funded public school. Laguna Beach has two elementary schools and there was one school nurse and a nurse’s aide at each. There was always someone we could get in touch with who had direct knowledge of our daughter’s diabetes.
Because each school is different, you need to know your child’s rights regarding diabetes care at school.
In the United States, diabetes is considered a disability. Individuals with Type 1 are covered under the Americans with Disabilities Act, the A.D.A.
Under the Americans with Disabilities Act:
1. Individualized health plans: Schools are required to work with parents, healthcare providers, and the child to create an individualized health plan that outlines the child’s diabetes management needs and accommodations.
This is the 504 plan. Your child’s doctor writes it and it is sent to the school. The school will understand exactly what is expected of them. Don’t hesitate to ask for the necessary help regarding staff and equipment.
Your child is entitled to the help and it is the school’s responsibility to provide it. We were fortunate to be in a school system that helped us every step of the way. We did hear from other parents about schools where the child was more or less on their own with diabetes management.
This is not only unacceptable but unlawful. If necessary, be clear with the school about your child’s rights and the school’s responsibilities under the A.D.A.
2. Non-Discrimination: Schools cannot discriminate against children with diabetes because of their condition. They cannot exclude children with diabetes from participating in school activities, programs, or services.
We ensured that our daughter did all available activities. We never wanted her to think she could be excluded because of diabetes. We instilled in her that she is like any other kid, and can do anything other children can do. Diabetes did not define her.
3. Reasonable Accommodation: Schools are required to provide reasonable accommodations to children with diabetes. This can include allowing children to take insulin or monitor their blood sugar levels during class, providing access to a private area to do so, allowing for extra breaks, and making accommodations for meals and snacks.
Some children might want their own space to administer insulin. With our daughter we wanted her to be unashamed of taking insulin or monitoring her blood glucose with others present. This is a personal choice, but by showing and educating others about diabetes we felt she could be proud and strong about managing her diabetes.
Because our daughter had the Dexcom G6 she needed her iPhone with the Dexcom app nearby. We went over this with the school and her teachers. We also made sure the school staff knew she should take a break and have a snack if she was low and take a break, drink some water, and possibly administer insulin if she was high.
The school also knew her insulin levels had to be in a certain range for her to participate in testing or extra-curricular activities. If her levels weren’t within range then testing would have to be rescheduled.
4. Trained staff: Schools must have staff members who are trained to help children with diabetes manage their condition. This includes training on how to administer insulin, recognize and respond to low blood sugar levels, and follow the child’s individualized health plan.
People make all the difference and we were very lucky to have great school staff that looked after our daughter. When she started first grade she didn’t have a pump so was using an Insulin pen to Bolus for meals. We would do her once daily Lantus injection at night but at school, she needed help to dose.
The school ensured the nurse’s aide was trained to administer her insulin shots. A nurse or nurse’s aide was always present at school. Because she had the Dexcom the school purchased an iPad for the nurse’s office. They could then follow her blood glucose levels and act accordingly. They also had a walkie-talkie in her classroom so the nurse could immediately communicate if our daughter needed a snack or to drink water.
The teacher would often ask if our daughter felt okay and ensured she brought her diabetes supply bag wherever she went. The school accommodated storing extra snack supplies and provided a fridge for insulin in case of emergency.
The school always went above and beyond. One day the nurse’s aide wouldn’t let her take the bus home because her level was too low. The nurse’s aide stayed later to make sure she was okay and picked up safely.
Then we moved to Denmark. We had to adapt to a new way of managing diabetes in school and a very different healthcare system.
In the U.S.A. we were fortunate to have good health insurance. We never lacked diabetes supplies and insulin. But if you don’t have great insurance, or if you are a young person no longer covered by your parent’s insurance, access to insulin and diabetes supplies can be difficult.
In Denmark, a socially democratic system with a universal healthcare system, you never lack insulin, C.G.M.s, or pumps. Everything is a phone call away and arrives the next day. No charge. You might not have the newest technology but it will eventually come.
The system is about the universal good. Helping everyone, not just the ones that can afford it. This is truly amazing and gives a parent security knowing that their child is going to be okay no matter what happens. It takes the burden and stress of worrying about medical supplies and insulin off your shoulders.
In the U.S.A. I was on the phone once a week with Dexcom trying to get coverage for sensors that failed. It felt like we were one step away from not having what we needed to care for our daughter. And this was with good health insurance.
Then there is our experience with the Danish Education System. There was no A.D.A., no 504 plan, no iPad, no walkie talkie. There was a “child who will run very fast to the office” if there was an emergency.
It would have been easier to enroll our daughters in an English-language International School. Instead, we choose to put them in a Danish public school. We felt it was the best way for them to learn the language and integrate into the culture.
It was also a quick lesson in self-reliance. In the Danish school, she would be responsible for her diabetes management. No more nurse or nurse’s aide. Looking back, this wasn’t the worst thing. She would have learned to self-manage eventually, we just didn’t expect it to be in third grade.
She was seven and on her own. She was monitoring her blood glucose levels and managing her insulin. Luckily, we could rely on technology. We were able to remotely follow her levels via the Dexcom Follow App and help her administer insulin with the Omnipod P.D.M.
Along with the Danish attitude of self-reliance, there was also the custom of help only being given if it is asked for. Self-reliance is prized I think because there is a strong social system. The help is there if you need it. Everyone knows this. So if you are struggling and not asking for help it is your own choice. If you needed help you would ask.
This works for an adult, but for a seven-year old, ex-pat child that doesn’t speak the language, it took some getting used to. It was a shock going from a school where people were always checking if you’re okay to one where it’s expected you were okay unless you say you aren’t.
This is clear to me now but when we dropped our daughter at school we didn’t fully understand this cultural norm. We were given assurances that she would be okay. She would be looked after even though the school had no nurse or trained medical staff.
In hindsight were we foolish? Yes, I wish we had known more but, as is often the case, you can only make decisions with the information at hand. She survived and thrived.
There were scary days for all of us. Pump failures, erroneous Dexcom readings, communication problems. Later, she told us often she felt like there was no one to help her. This broke our hearts. Fortunately, there are often ‘angels’ that pop up to help when you need them.
Because she needed to learn Danish, she was placed with two other girls. One was a Thai girl who spoke little Danish and no English. The other was a Moroccan/Swedish girl that spoke English but little Danish.
They were grouped with Tomas, an aspiring teacher who was an ex-theater actor and bartender. Tomas turned out to be an ‘angel’. He cared and truly wanted to help. With her new friends and Tomas, she found a supportive family at school.
She also learned to listen to her body when her levels were low or high. She would text us if she was feeling low and when she was having snack or lunch. The technology was not perfect but I don’t see how we could have managed without it.
The technology was a perfectly imperfect tool that made it possible for her to go to school, even in a country where she didn’t know the language. Fortunately, she quickly learned the language and with her newfound self-reliance she was able to manage her diabetes.
The biggest lesson from living in Denmark is that self-reliance can be learned at a young age. Let go of some control and give your child more freedom in regard to their diabetes management. Learn about and embrace the technology while never putting 100 percent faith in it. There will be those days of pump and G.C.M. failures. There will be days when you can’t reach your child who is going low but doesn’t respond to texts or calls. You both will survive. Find the angels and don’t hesitate to ask for help.
Things to do:
Write up a diabetes care plan – Even getting a rough idea down on paper will help mold your expectations and questions regarding your child’s care.
Have a 504 plan from your doctor or your plan of care/emergency plan. If you are in the US the doctor should write up a 504 plan that will outline what is expected of the school. Make sure the school has copies. If you’re outside the U.S., right up a simple guide to understanding diabetes and what needs to be done or understood about your child’s care.
Arrange meetings with administration and teachers. Go over your plan or the 504.
Be willing to do training about emergencies, glucagon, or other treatments. Provide resources so individuals can train or better inform themselves about diabetes care.
Emergency contact info – make sure everyone has your contact information and you have everyone’s as well. This should include personal cell phone numbers if people are willing to give them. Knowing that you can reach someone is a great relief in times of emergency.
WIFI – ask if the school has WIFI and if your child’s devices can be put on it to avoid cell phone service holes.
Emergency supplies – make sure that the school office, classroom, and after-school all have supplies of snacks/juices and any necessary diabetes supplies.
Have a Daily bag packed with supplies – P.D.M., phone, supplies, Glucagon, Blood Sugar, Ketone tester with plenty of test strips, charging cables, and emergency contact info.
Be open, helpful, and encourage learning about diabetes. We gave a talk to our daughter’s first-grade class so all the kids would have a basic understanding of diabetes.
Encourage your child to take part in everything from field trips to after-school activities. Let nothing hold your child back.
There will be bad days of highs and lows. If you can’t prevent them then manage them. Do corrections, encourage water drinking, and break taking. Be prepared for emergency pump and Dexcom failures. Remember that how you manage these events will be how your child manages them in the future. Model a calm and capable response to difficulties. You and your child will get through it.
Lastly, ask for help and look for the angels. They are there.