Tag Archives: children with diabetes in school

Back to school with diabetes

Back to school with diabetes

Heading back to school can be stressful.  There are new books to buy.  Every child seems to need classroom shoes, gym shoes, walking to school shoes and then there are the gym clothes, jeans and more! The list is endless but when you are a parent of a child with diabetes, there list is longer.  Thankfully there are a few basics to remember when sending your child with diabetes back to school.

Meet with staff

No matter where you live, you should always make sure that you have a meeting with school staff before your child heads back to school.  If you live in an area that has 501 plans or any sort of diabetes care plans in place, this meeting can be where details are finalized.  If you don’t have any sort of official plans in your district, a meeting with staff is still important.

You want to meet with staff to discuss what they can expect when they have a child with diabetes in their school.  While your child may not be their first child with diabetes, each child’s care needs are different. It is important that they understand your child’s individual treatment plan.

At this meeting you will work together to establish roles.  Carefully outline what do you expect from the teacher and the support staff. Make sure that they understand what they can expect from you.  Finally,  ensure that everyone knows what tasks your child can do on their own.

You should also discuss things like, how will exams be handled?  It is important that school staff understand that  diabetes can cause cognitive impairment when the child is out of range.

You also want to establish a method of communication. The school  should understand that they can contact you and that you would like to be able to stay in touch with them.  Working together will make the year go smoother for everyone.

Click here for a few more ideas of what to take to this meeting.

Gather diabetes supplies.

 

 

Depending on the age of the child, the list of supplies that you require can be different.  A small child will require a change of clothes just in case he/she is high and has an accident in school.  An older child may require access to a phone or cell phone to ask you questions about their care.

Here are a few basic items that can be left in a backpack or put in a safe place at school.

  • juice boxes or glucose tablets
  • granola bars or other carb rich  and carb free snacks
  • spare test strips
  • meter batteries
  • pump batteries
  • a spare glucometer
  • extra needles or pen tips
  • spare insulin vial (to be kept in a fridge)
  • ketone meter and strips
  • spare infusion set
  • spare insulin reservoir
  • alcohol swabs
  • hand wash
  • water bottle
  • sharps disposal container
Other things to remember

If your schedule allows, volunteer to be a part of activities at school.  This will give you a chance to get to know school staff and they will learn a bit more about you.  It will also allow you to discreetly keep an eye on your child’s care without them feeling different.

For younger children, check to see if supports or nurses are available through your district.  The school may be entitled to extra funding that would allow them to have one on one care for your child for all or part of the day.

Make the year fun! Your child is a child first.  Plan ahead with staff regarding things like parties, extra curricular activities, outings and exams so that your child gets the most out of their school year.

For a guide to care policies in many Canadian schools please check out this link.

 

Diabetes Made me Do it

Its the first day of another Diabetes Blog Week! I am so excited to be a part of this wonderful adventure once again.  As a blogger, it allows me to have topics chosen for me and write about topics that I may not have otherwise thought about.  As a reader, it gives me the chance to see many new blogs that I may not have come across before.  In other words, its a win-win week that I hope you enjoy as much as I do!

Today’s prompt asks me to share  what I have done because of diabetes that has made me the most proud or what good thing has diabetes brought into my life?

Obviously I am proud of the way my son is learning to handle his own diabetes care.  How much of that is up to me and how much is just his personality? We will never know but he takes each day in stride and never seems to complain about his lot in life. I can’t ask for much more than that!

For me personally, diabetes has brought an incredible network of friends.  Those friends have encouraged and inspired me to be involved and help to create changes to the world of diabetes in Canada.

It amazes me to look back at how long I have “known” some of these people.  There are the core group of parents that I met on the Children With Diabetes Parents Email list almost 15 years ago.  They have been with me through the good and bad.  They have been there with a hug or a shove in my personal life as well as in our life with diabetes.  The connections made there have been some of the dearest of any I have ever made.  They are truly the very, very best thing to come out of a life with diabetes.

With their encouragement and prodding, I began to look to see what I could do to better improve the lives of people with diabetes.  It led me into two areas–both dealing with fairness.  First there was the issue of fairness in our tax system.

Not long after my son’s diagnosis, I learned of a thing called the Disability Tax Credit.  In reading the description, I knew that my son qualified. In time,  I came to learn that the Canadian Revenue Agency did not always see things the same way that I did.  Some people with diabetes were qualifying, some weren’t.  Some people with diabetes were fighting for this right in court, some weren’t.  I sought to equalize the playing field and make the powers that be understand what was really involved in living with diabetes.

During this process, I met more amazing people.  There were families struggling to get by. There were adults who just wanted to be treated equitably and see some financial relief from the burden of diabetes care costs.  I interacted with many people, some I still hear from and others I see in posts on various social media platforms.  Each one was vital for their support and their belief in what we could do.

Together we did make a difference.  Today, all children under the age of 18 are given the DTC upon receipt of the T2201 from their doctor indicating a diagnosis of Type 1 diabetes.  Adults are also eligible for this credit but still must first prove that they are intensively managing their diabetes care and that it takes over 14 hours per week.

When I read posts online about people getting this credit or when  I read others advising their friends to check out my website for tips and information, my heart swells. I know that I have made a difference.

The other thing that I have done because of diabetes that makes me proud is my work with parents and educators in regards to sending children with diabetes to school.  This issue has been something that I have worked on since my son was 3 years old.  He will soon be 18.  The situation is not perfect, but I am happy to say that there have been profound and real changes in how diabetes care is viewed in many Canadian schools.

When I began this journey, the only province to have any sort of legislation or provincial policy in place was New Brunswick.  To date, provinces such as Quebec, Newfoundland, Nova Scotia and BC all at least mention the care and treatment of children with diabetes in schools in their provincial education policies.

We still have a long way to go but I no longer receive numerous telephone calls each fall from parents struggling to get help.  I hope that that is a sign that there is more and more support out there for families and students.

Diabetes is a crappy disease. It ruins holidays. It never goes away. Its unpredictable at times and never takes a rest.  It has however brought me a network of friends that have kept me sane throughout the years.  It has allowed me to help in areas that I never would have known about otherwise. For those things, I am truly happy to be able to say that “Diabetes made me do it!”d made me

 

 

How to be an Advocate

Advocacy.  What is it? How do you describe it or explain to someone how to become an “advocate”?

A number of months ago I was asked to talk about the topic of advocacy. It was the hardest discussion I have ever done. Its not something that I think about. I can’t say, go through these steps and you will be an advocate. An advocate is just something that we are when we are humans who take a stand. I was an advocate for what I believed in as a young pre-teen and I have continued to be an advocate as an adult and parent.

Google says that an advocate is a person who publicly supports or recommends a particular cause or policy. As a parent, when we stand up for our children in school we are their advocate.  When we go to the doctor and ask for a particular treatment option, we become a health advocate.  We may not be Martin Luther King Jr, Nelson Mandela, or Gandhi but we are advocates nonetheless. We do make a difference.

We make a difference to ourselves and our perception of who we are.  We see ourselves as stronger and more in control of our own destiny.  We make a difference to our loved ones by providing them with a positive role model. Do we change the world? We just might.

Very rarely do advocates strike out on a journey expecting to change the world.  Often, they have begun to travel the road they are on for selfish reasons–they want to change something in their own lives.  They want to make things easier or better for them.  I began to seek out change to the Disability Tax Credit because I saw flaws in the current system.  I knew that I had the strength to stand up for my son’s rights but as I continued on my journey, I realized that many others would not have the resources that I did.  It was important for me to do everything that I could to make the road easier for those who came after me.  After a lot of hard work and support, we have the changes and the much more fair treatment that we see in those applying for and receiving the tax credit today.

fairness report

Parents are taking school boards and provincial departments of education to task and seeing changes in how diabetes is managed in Canadian schools. In California, advocates stood firm and were able to fight to keep nurses in their schools for their children with diabetes.

Most recently, patients here in Canada took it upon themselves to push Health Canada to see the Animas Vibe insulin pump approved for sale.  Phone calls, emails, and letters from everyday consumers put pressure on this regulatory body to give Canadians living with diabetes another choice when it comes to insulin pumps with Continuous Glucose Monitoring capabilities.

Regular people did these things.  People like you and me.  People who simply were not happy with the way things were and publicly asked for change.  Average citizens wanted to see a change in their world…and it rippled into the lives of many others. Its that simple and that complex.

It takes a step forward. It takes action. It takes confidence and a bit of blind faith but we all can be advocates–first for ourselves, for our loved ones…and then for others.

This posts marks the beginning of a new feature I will be doing at Diabetes Advocacy. On a regular basis I will be dedicating posts specifically to what is going on in the advocacy world–a recap as well as creating awareness of specific campaigns that are ongoing.  If you are involved in an advocacy effort, please email me and let me know. 

Changing of Roles

Today is the first day of school.  My son is starting grade 11 in a new school.

For the first time since he has been in school, I will not be sending a diabetes information package to school. I will not be emailing each teacher and giving them a heads up on what to expect. This year, my son has decided that he needs to take charge of his life and his diabetes care.

I am nervous…this is a step up from the pure terror that racked my body when he first told me of his decision.

This school is not unfamiliar with diabetes.  They had a student a few years prior who had diabetes as well.  The community knows of his condition so it will not be something new for his fellow classmates.

I will not however, be going in and asking that they know about Glucagon or finding a person who will be trained to use it. I will not be taking each teacher aside and drilling into them as much information as possible.  I will not be sending my usual package of information.  This is all for my son to share. It is up to him what he says or does not say.

I am confident that my son “can” take care of himself.  I have been training him for years.  He has shown in the past that he can’t always be bothered to do this but he swears that a magic wand has been waved over him and he has changed. I don’t believe this but I have to let him try no matter what. This is the hardest part of being a parent. Its like watching them learn to walk all over again but this time you can’t pad the furniture and make sure that they land on carpet.  You can only watch, pray, and hope for the best.

I will contact the school and remind them of my contact information. I will tell them that if they have any further questions about anything including diabetes that I am available.  That will be where it starts and ends.

Young adulthood arrived in our lives sooner than expected.  Its now time to adjust to the new roles and be there when I am needed only.This is going to be a tough road! first steps