Category Archives: children with diabetes in school

Making it a better school year

back to school with diabetes

Going back to school is a daunting task at the best of times.

There are new clothes that they will outgrow next month.  School supplies will be purchased that will not quite match the requirements of their particular teacher but you won’t know that until after the first day. You will have to pay for three new pairs of running shoes because they can’t wear street shoes in the classroom and they can’t wear classroom shoes in the gym.

Those chores are stressful enough but if you have a child with diabetes, that is only the beginning of the worries. Next is what should I  put in their diabetes kit for school? Where will that kit be kept? What sort of information should we provide for the teacher this year? What can I expect the teachers to do? Will they inject my child? Will they monitor his testing? What if she goes low? Will anyone care? How will we cope with the bus? Will they give out treats in school? What will happen when my child is high/low during an exam?

The list of worries for a parent of a child with diabetes going to school goes on and on. I went through these stresses when my son was in preschool until his very last day of high school. It doesn’t get any easier.  The worries simply change.  In kindergarten you wonder who will help with her testing.  In their pre-teen years, you wonder if the teacher will help remind him to test.  In their teens, you worry that the teacher will think that she is playing with her phone when she tests.

Despite the fact that the worry is still there, I will tell you that the systems have improved.  We now have provinces (see British Columbia, Quebec, New Brunswick and Newfoundland and Labrador) with some sort of guidelines for dealing with children with diabetes entering their schools.  While there is often a need to specialize plans and meet with the school staff for your particular child’s needs, this is a huge leap forward from provinces with no basic guidelines.

In other provinces, where provincial policies have not yet been agreed upon, most boards offer individual policies that range from talking about diabetes as a medical condition in school to dealing with specific diabetes related issues.

For those living in the US, you don’t have to worry about state policies or even specific school board policies.  All children with diabetes are covered by the American Disabilities Act and as long as they are in a public school, should have a 504 plan in place dictating their diabetes care.

No matter where you live, it is important that you keep an open and honest dialogue going with your child’s school.  The majority of teachers in the education system are there because they truly care for kids.  This means that they want to help you in any way that they can.  Ensure that you have a meeting with staff to discuss your child’s needs, what you can do to help make things better and the role that you expect educators to play.  Remember that they are just people who will also be overwhelmed by diabetes care. Make things as simple as possible and check to see if your area has access to a nurse to assist with younger children’s care.

As your child grows and becomes more independent, it is important for teachers to understand the behaviours of high and low blood glucose levels.  You don’t want them suspecting that your child is drunk when they are low.  You also don’t want an altercation to take place because they are high.

Going back to school can be overwhelming.  Going back to school with a child with diabetes seem worse.  Make sure that you…

~plan ahead

~set meetings with school staff

~create 504 or individual care plans were available

~leave information for supply teachers

~be available for questions and concerns that will arise during the year

~enjoy another successful year for your child…the time really does go by in a flash!

 

For further reference see:

Going to school with diabetes 

Things to Remember when sending a Child With Diabetes To School

School Bill of Rights for Every Child with Diabetes

CDA Position statement on Students Living with Diabetes at School

JDRF Children with diabetes in school

Things to Remember when sendng 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 childposted 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! 

I am not slack, I am warm and fuzzy

My son has been back to school for a week now.  Unlike previous years, I did not send any information to school.  I did not contact the principal. I sent my son’s supplies to school with him and planned to send out a detailed email to all of his teachers within the coming days. 

I am not a slacker who no longer cares about her son because he is now technically in high school. Its simply the fact that the majority of his teachers have had him at one point over the past two years and have been sent my information before.  There are also now two children with diabetes in his school.  This means that they bring in a nurse at the beginning of the year and “educate” the school.  I know that this is contrary to everything I tell people.  I preach that you should be in on these meetings and I still feel that way but again, these teachers have been educated by me for a number of years so I don’t feel like being overly pushy on this issue.  

I also now have two other fall backs in case of emergency this year.  A teacher that my son had at his former school (who taught my son for three years and was AMAZING with his diabetes care) is now teaching a lower grade in my son’s new school.  My son also has a teacher (that he has had in the past) who’s husband has Type 1 diabetes, is more than willing to be there in any emergency and will handle things like glucagon if need be.  I love these people!! They allow me that warm fuzzy feeling of knowing that my son is safe at school. 

It was therefore somewhat surprising when my son handed me a folder that I had created two years ago and said “My teacher says that this needs to be updated by my doctor.”  I looked at him like he was nuts.  

“Your doctor?” 

“Yeah, that’s what he said and can you fix that picture of me? I look like a complete dork!”

I shook my head and took the folder.  I was glad that previous homeroom teachers had seen fit to pass the “red folder” on to the next year’s homeroom teacher.  The picture was a little dated but based on the fact that the folder contained information on my son with notes to contact me, my name and my cell phone number along with basic facts about diabetes care, diabetes, highs and lows, and insulin pump use, I am thinking that the teacher did not take the time to actually “read” what he was given. 

Either way, I will update the information…and the picture.  I will get myself in gear and make sure I contact all of his teachers once again to let them know our basic diabetes care rules–testing in class, access to the washroom and water, as well as testing to know that he is in range and firing on all cylinders before exams.  

Its good to know that they are still taking diabetes seriously because sadly it does not “improve” with age the issues simply change a little. 

I am guessing that this won’t be his first choice for replacement photo either 🙂



Back to School is changing

Today is the first day back to school for my boys.  One is starting his last year of school and my youngest is entering grade 9.  Where did the time go? It seems like just yesterday I was sending my oldest to preschool and now I am looking into university costs.

There are some good things about time moving forward though.  This year I do not have the stress that I had last year.  I spent the end of last year getting my oldest son’s classes in order. This fall my son with diabetes is a year older, has most of the same teachers and the same principal.  The school now has two children with diabetes and hopefully much more awareness than they did one year ago.  

I will still be in touch with the school. I will offer a refresher course for those who heard me last year and education for those who might be new.  My son has his phone and alarms put back on his pump.  I will hope that a new year will mean a new adherence to those alarms and more information for Mom (but I am not holding my breath!) 

Its not just in our own world that we are seeing changes. I used to dread this time of the year because of the many phone calls and emails that I would receive.  Families were struggling to get the support that they required for their children with diabetes in schools.  Mothers would call me in tears, frustrated by the lack of support. Today there are many more boards who have policies regarding the care of children with diabetes in their schools.  There are more provinces that are looking out for our children. There are more parents standing up and asking for schools to “get it” and more schools are!

Each year I speak about sending your children to school with diabetes.  Each year I prepare educators and parents.  As time as gone on, I am pleased to see that things are changing.  Parents are sending their children back to school with comprehensive diabetes care plans and the knowledge that they will be adhered to.  Educators are offering aids and assistance where they can. The transitions are smoother than they once were.

This has been a long road.  We still have many miles to travel to protect all children with diabetes in schools.  As someone who has been on this road for ten years now, believe me when I say that we have come a long way.  We have made changes and together, we will work to make many more.

Thinking about Back to school

As I was shoveling out my desk this morning, I came across some things that I had gone through before I went to Toronto. One of the sessions that I facilitated at Friends for Life Canada, dealt with going back to school. I had references to the latest provinces to enact a policy as well as high and low handouts. I also came across my son’s school supply list. This made me think that it might be time to start addressing back to school here as well.

I hate back to school.  I used to love it.  When I was a bit younger, I loved the new school clothes, fresh notebooks and clean new binders.  I enjoyed fresh text books and the thought that “this year I would be more organized.”  Now I am a mom and I look at things a bit differently.  Back to school means early mornings, school lunches, and new clothes that he will grow out of before Christmas.  Being a mom of a son with diabetes means having all of his supplies for school, having his diabetes supplies for school and arranging to train his teachers in diabetes basics. Did I mention that I hate back to school?

No matter how much I don’t want it to happen, we will be back to a regimented life…and diabetes in school. Over the years I have been given some great presentations for both staff and students.  People have sent me wonderful information packages to send with their children to school.  Each year, I dutifully head over to the NovoNordisk website and print off multiple copies of the highs and lows symptoms for the school.

I also pull out the “little red box”.  This box has been used since preschool.  It is a box that has emergency instructions taped to the top.  It also has spare glucose tablets, batteries, infusion sets, tape, crackers, test strips, and a bit more inside.  These supplies are to be kept in a safe place in his homeroom.  They are only to be used when the supplies he carries on him have diminished and he has failed to tell me that he is out.

My son has reached an age where he has become very private about his diabetes. Actually he has always been very private about diabetes,but he used to be young enough that Mom would win out and bring diabetes education into the classroom. When he was younger, we would read about Rufus going to school. As he got older, it was the sponge demonstration of your brain absorbing glucose. Now he will only talk about diabetes with his peers on a “need to know” basis.

This year I won’t have to worry about educating the teachers. I will double check with the principal to see if they would like a refresher course, especially since there are now two children with diabetes in the school. My son should have the same teachers as the year before and I have met with them a number of times. I think they have the drill down pat.  

In the fall I will instead focus my efforts on ensuring that the Deputy Minister of Education really does keep me in the loop on their policy review. I will also renew my chatter to our school board and suggest with another diagnosis in their school system, that diabetes is not going away and a policy should be in place to clearly outline the roles and responsibilities of parents, staff and students.  Until the fall arrives however, I think I will just search for summer!

Exams and Diabetes…what a stressful combination!

Exam week is winding down and hopefully so are my nerves. My oldest is very self-sufficient and pretty serious about his grades. My youngest, well this is his first time around.

I find myself nervous for both of them. I want them to do well. I check in with both of them each day. I am sending good luck and wisdom vibes each morning. They are both great students so they should do quite fine but there is always worry.  Diabetes has added an entire new level of anxiety to the equation however.

As I have mentioned, we had been dealing with low, low, low and yep, more lows. I have dropped basal rates, added temporary rates, and changed carb to insulin ratios.  Because he is in exams for only the morning and then off for the rest of the day, I had seriously thought of switching him over to our “weekend” basal rate.  Then came the anxiety.

He was perfect on Monday for his first exam.  Readings before and after were exactly where I wanted them.  His performance was his own and was not marred by highs or lows.  To change to the weekend pattern would adjust some of the early morning basals.  This could mess with the perfection I had going! I couldn’t do it. I left things as they were, tweaking the “school day” rates.

All night I was anxious.  I had anxiety attacks and woke up feeling horrible.  Did I do right? Would he be okay for day 2? No, not really.  Diabetes decided to mess with that and he ran high for exam number two.  Day three was a bit better.  He seemed in range although I can’t say for sure because he forgot to test when he started the exam but he was in range by the time he was done and reviewing what he had done. 

Today is day four. He knows his stuff cold. Its science and he really seems to understand the concepts.  I am hoping for some positive results so he can see that his hard work (Mom making him study for the past two weeks) really paid off. He is nervous about his last exam but he has decided to meet with his teacher for some extra help today before tomorrow’s exam.  I am excited by the fact that he is beginning to take some responsibility for his grades without too much pestering from Mom.

Two more full days and I am shed myself of the “school days” anxiety.  Two more days and we can fight with basal rates again without fear of messing with school testing. Two more days and I will have about 10 days to get his summer rates sorted before he heads off to spend time with his father and his brother.  That will bring a new load of anxiety and stress as I worry about him testing and bolusing while he is away but we will take one set of worries at a time for now!

Advocacy burn out…and recharge!

There are days when you wonder, “why do I do this? Am I past my best before date? Should I shut everything down and disappear into the wood work?  Have I had my last hurrah?”

I started http://www.diabetesadvocacy.com/ years ago when I felt that Canada needed a bit more for children and parents of children with diabetes.  It became a great platform to rally people and create the change that we saw in the Disability Tax Credit.  Over the years I add the “blog” as some people were actually interested in how we handled diabetes and felt less alone reading about the insanity in my world.

As I kept this stuff going, there were some seriously low times in my life.  There were okay times in my life and there were some great times in my life.  Doing this “stuff” was an outlet.  It made me feel like maybe I was doing something and helping someone.  I receive phone calls and emails that let me know that I was helping someone and I did make a difference.  They kept me going but there always is that little voice that says “Go and get a real job.  You don’t matter any more.  Get on with life and let the next generation of diabetes advocates have at it.”

Yesterday was a five star day that should hopefully quell that voice for more than a few days.  I received an interesting email from a lady and it took me a little off guard.  Her grand-daughter was having a baby shower and instead of a gift had asked that she support http://www.diabetesadvocacy.com/ by purchasing something from the online store.  I had once had a woman want to incorporate diabetes awareness into her wedding but this was even more personal. It was addressed to me.  The young lady appreciated what the website has to offer and wanted to do what she could to support its continued existence.  It truly touched me.

This was actually the icing on my cake for the day.  You see before this woman’s email I had received another one stating that someone would be in contact with me.  That someone was in charge of changing the Standards for Children in Schools in our province.  For the first time, after too many years of asking, our province wanted to change how they deal with children with diabetes in schools.  They realized that the system they had in place was just not enough.
I live in a province with a large number of children with diabetes.  Each year I receive phone calls from parents in tears after trying to get help and understanding from their schools.  There are some great schools out there but there are some terrible ones.  A policy for the province would help to even the playing field for all students with diabetes. 
I had done it! The emails and conversations to friends and politicians asking them all to help had paid off. They want to talk to me about doing what they can for children with diabetes.  I don’t expect miracles but going from nothing to something is huge! I was so overwhelmed–so happy.  Finally we were starting to see change!
As you can tell, my energy has been recharged.  The little voice given a good smack that should keep it in check for at least a few months or more.  We all have our ups and downs, our highs and lows, but as the saying goes “To the world you may be just one person, but to one person you are the world.”  Making a little difference is a very big thing.

We’ve all got something

This week I finally got a chance to sit down with my son’s teachers, the principal and the lady in charge of special education to talk about diabetes as it pertains to my child. I appreciated the opportunity and once again was a little nervous going in.  I reminded myself that I talk to people about this very subject–how to speak with your school about your child’s diabetes.  Why was I so worried about my prep? Why was I concerned about how I would be received? Because I am human. Because I am a mom.  Because I have been educating people for over ten and a half years and still am lucky if I get through to a quarter of them. 

I worried, who would show up.  Would I hold their attention? Would they be willing to learn? There was a teacher who had a diabetes connection in her family, would she know everything? Would she know anything? Yep, basically I was terribly paranoid.

The school has been wonderful to date.  Its another small school and my son seems to have quickly become comfortable there. He is still a quiet child but he is involved in their lunchtime sports and comes home talking about various students in his class and things that they have done.  That is definitely a huge weight off of my shoulders. That also made me anxious about going in and making more demands.  

It was vital however that they understand how the brain functions (or doesn’t function) when high or low.  I had to make them understand that he was private and often would not tell people when he was out of whack.  I did not want to come across as a demanding parent but these were important concerns.  These were things that would impact his academic career.

Things went well.  Everyone was very open and willing to learn.  One teacher did know about this and that…and she truly did.  She even asked if he carried Glucagon.  The other teachers asked questions and the principal began to work out a plan on how best to deal with the issues at hand.  Teachers were fine with readings being written on exams or writing them when in range if need be.  YES! One victory.  The next issue was how to make the other children aware of his diabetes.  We all agreed that other students are our best protection.  They see more, they are with him more, they can help a lot more than most adults in many situations. The next question was how would we handle this? How do we get my son to talk about his disease? According to him, no one in his class knows he has diabetes. This had to change.

The conversation led to another person at the table stating that she wished her daughter would open up more about the learning issues that she faced.  As I sat at the table I realized that in that small class, many students were facing some sort of a challenge.  It may have been physical as in my son’s case or it may be something that challenged how they learn.  Everyone has something. Everyone carries some burden.  Everyone faces challenges.  That became the angle that one teacher decided to take. It was decided that diabetes would be a health topic but discussing your own issue and the battle you face would be a project that all students would do in another class as well.

This should be interesting. My son does not talk about his disease. He probably figures that Mom talks enough for the entire family and then some. At breakfast we discussed how important it was that he talk. He needs to have people around who know that he has diabetes and who can help him in an emergency.  In his old school, his friends had grown up with diabetes. In our new area education is just beginning. I hope he opens up a bit at least with a few students. Time will tell I guess.

Preparing myself for Back to School

Yes, its preparing Mom not preparing child.  Getting the child ready was simple.  It involved one shopping trip and far too much money.  The cell phone has been upgraded.  School clothes have all been bought. New shoes have been purchased in a larger size.  Books we had already but pens, glue and and other items have been bought and stacked to head off to school next week.

Mom on the other hand has been dawdling beyond belief.  Despite talking about sending your child with diabetes to school and despite helping other families with their preparations, I hate this part of the school year. I am surrounded by documents that must be printed and edited.  We are heading into a new school, my son is now a teen and my hair will all be grey any moment now.

Its all my own anxiety.  I have been in contact with the school on more than one occasion.  They have been very accommodating and will be meeting with a nurse even before I enter the building to begin to try to understand what is required of them.  Personally, I am nervous about a nurse meeting with them on this issue without me being present.  For those of us who live with diabetes, we know how individual this disease is and I am hoping that general statements are not taken for absolute fact. I am also not sure how often he/she has been dealing with Type 1 diabetes in recent years. 

The principal is still very open to meeting with me on the issue and discussing Liam’s specific needs.  The secretary has asked for two copies of a letter stating the accommodations required for Liam.  I told her that I usually do up a booklet for the teacher who will be with him most of the time and would gladly make her a copy.  She was quite happy with that.

Thirteen is such a joyous age and diabetes does not make it better.  Children are becoming young adults and they want their independence.  I fear how much I can truly give a child with diabetes. I know that he will be an adult and such but no matter what his age, he may still need help with a low.  No matter what his age, he still needs someone else to administer Glucagon.  No matter what is age, he still can’t see properly when he is high.  I just hate those facts.

I will ask that my child be allowed to test in class. He is most comfortable there and misses less class time. This is something that was allowed in his other school so I am sure that we can work it out here.  They are encouraged to bring a water bottle so that covers that problem.  He is old enough to bolus based on the carb counts that I send to school, so again, this will not be an issue.  I will bring instructions for Glucagon and hope that they will consider using it.  They are close to a hospital but just in case, it cannot hurt.  I will also be sending him to school with his cell phone.  This may be a bit contentious but I feel its important if used properly. I have already warned him that it is ONLY to be used to call me if he is high/low or questioning what to do about something.  It would also be used if he was low and could not ride the school bus or considering the length of time I now anticipate him on the bus, a high may well warrant a ride as well.

Its been two days since I started writing this. I have a pile of papers all around me and nothing is finished. I have a box that I purchased to put his emergency supplies in. He swears the old box is here somewhere but I haven’t seen it all summer. I hate back to school. One of his old teachers has spoken to the new principal.  Everything is in very good hands…I am still a mom. I have mom anxiety.  Going to school should not cause such stress but I guess it does for every parent especially those who are sending a child with a chronic illness or condition into a new classroom setting.

Okay…I will get these documents in order and updated. I will…soon.