Mothers Day Reflections

In North America, Mothers Day is this weekend.

I have seen that JDRF Canada is doing promotion this week on #Type1derWoman  This looks really fun and I can’t wait to see more.

A few years ago, the DRI did a segment on the Real Moms of Diabetes.  A few of my friends took part. It was equally as moving.

And of course there is the incredible poem written by my dear friend Linda Kaniasty that mothers in the UK put to video.  It still makes me cry.

All of these posts have me thinking about life as a D-momma.  My role has changed a lot over the past 16 years.

I started out as the mother of a toddler with diabetes.  I was lucky.  He didn’t mind the shots.  He was okay with finger pokes.  He hated to eat however.  That was a challenge.

If I had it to do all over again…and it was 2016 and not 2000, well I would be putting him on a pump right away.  There is no need to fuss with injections, a pump would give us the flexibility to let him eat the way  he wanted.  I would have a CGM so that when he fell asleep, I would know if he was just napping versus having a low and couldn’t tell me.

I would still use bribery.  Stickers and rewards were a fabulous way to get through everything from potty training to meal fights.  I would still allow him to inject and have control of the diabetes care for his toys.  This was a great way to give him power.  I would still worry and log like crazy but that is me.

Eventually my toddler grew and went to school.  The worry again was tangible.  I had friends who would be watching out for him in school but I was terrified.  There was so much that could go wrong.

If I had to do it again, I would have released the terror.  He was left in the care of teachers who truly cared about their students.  He had friends who cared about him.  They all would do their very best…or call me if in doubt.  I didn’t need to hover. I didn’t need to stress–as much.  It was okay.  Yes, there would be wrinkles along the way but they were small. He would survive.  We would all learn. It is important to relax a little during these years as greater challenges will come.

As my child became a preteen, the issues again changed. We struggled to find a balance between what he should be expected to do and what I should be expected to do.  I ached that he was expected to do so much.  I grew frustrated when one of us failed.  If I had to give myself advice for that time looking back it would be that it will be okay.  You will find your way.  If he didn’t die,  learn from it…both of you.  Work hard. He is listening in his own way.  It will be worth it.  He can stumble a bit.  Its okay to wipe his knees but he will get it.

When my son became a teen…well didn’t that change everything!  There were now hormones.  There was the teen brain.  There were struggles.  There were worries.  How do you balance allowing him to be a normal teen (with all of the worries that comes with that stage) and being a teen with diabetes? You ask for help.  You reach out to those who have been there…and you pray.

As a teen, my son decided that he knew it all.  He decided that he really didn’t need the care of Mom any more.  He moved away and decided to finish high school while living with his father. I foresaw many problems.  Some of them came to pass…some didn’t.  I felt like a failure. I was a parent whose child didn’t want to live with them.  People reminded me that it wasn’t about me, this was about him.  It still hurt.  My one clearly defined role now became more blurry than ever.

My son is now a young adult.  He is 18 and learning to live with the choices that he has made.  He has stumbled.  He has tripped a few times but he has done okay. He is getting stronger in more ways than one.  He understands his body he tells me.  He is tightening his control.  He has learned. He knows he can still come to me when he loses his way.

So what would I tell that Mom of a toddler now? You’ve got this.

What would I tell that mom who is watching her son head off to school? The school and his peers have your back.

What would I tell that mom of a teen? He really did listen and learn when you were sure he wasn’t.  Somehow you will both live to go through another stage of parenthood.  Some days will hurt but most days will be a blessing because when you look back at where you have been, where things could have gone? Life is amazing!

There are still challenges.  We still have a long road ahead of us.  No matter how old my children are, I am still their mother.  They are still my children. I worry. I care. I love them deeper than I could have ever imagined.  They make me shake my head at times but they also make me proud.

For all of you fellow D-mommas, take a moment and be proud.  Be proud of YOU and all that you have accomplished when faced with this huge burden.  YOU are amazing!

liam barb sept 1999b

 

 

He’s Got This

Over Easter, my youngest son came to visit.  Each time he visits me I am shocked by how much he has grown. My little boy is long gone and a young man is emerging. A child with diabetes is being replaced by a young person with diabetes and I stand in awe.

This time I stood back a bit more. I tried not to fall into old habits of taking over care or nagging about testing. I gently reminded. I compared carb counts now and again when asked.  I tested him at night at his request but mostly I sat and watched.

I wondered how his care was going. He hasn’t told me an A1c in years. I worried about his rates. I worried about his health.  The more I tested, the more I watched, the more my pride grew.

He wasn’t perfect.  He still doesn’t test as much as I would like but when he did test, his results were awesome. When he ate junk, which he doesn’t do as much any more, he nailed the bolus.  When he spiked because of a low cartridge and air being delivered instead of insulin, the spike was no longer in the 20s (360+) it hovered in the low teens.

I sat back and realized that he’s got this.  All of those years of preaching, teaching and sharing have paid off.  He is taking care of himself.  He is trying to protect his body from itself and doing a good job.

In a recent conversation I reminded him that he is the expert in his care.  It is his job to ensure that he is able to demonstrate that to medical professionals that he sees.  He should listen to them and be willing to accept their help but he may also have to remind them that he has been doing this all of his life.  He has been privileged to be trained by some of the very best people in diabetes care in the world.  He has a very good handle on things and a huge support network to reach out to when he is in doubt.

He explained that he finds that very frustrating.  He doesn’t want to get into a contest of who knows more when he sees someone but he feels that after all of these years he does know his body.  He is very healthy.  He has got this…and he has!

hes-got-this-poster2

Diabetes care is tiring and I feel guilty

diabetes care is tiring

I am worn out, dragged out, dead tired…after just two nights of diabetes care.

I am out of practice.

I want a Continuous Glucose Monitor.

I want a cure.

I feel guilty. I can’t wait to get my sleep back again.

My sons came to visit for a few days.  It was the best Easter gift…having both of my boys here with me for Easter dinner! I was over the moon.

Diabetes had to tag along for the ride.  It could have stayed behind.  It played better than it has on some visits, however.

His blood glucose level was perfect. It made me worry.

I was pleasantly surprised when I got up to check my youngest son’s blood glucose levels on the first night.  He was a perfect 5 (90).  I didn’t sleep.

He was perfect. Exactly in range.  What was next? Would he rise? Would he go low? I didn’t sleep. I rested now and then. I checked.  He dropped a bit. Not enough to worry about. I tried to sleep. I worried instead.

The next night his blood glucose was high.

The next night we had the opposite problem.  The cartridge in his insulin pump had run low. His blood glucose went up.  It didn’t go up as high as it had on previous visits.  He is even more fixated on his health and improving his control on his own.  He corrected. He had command of this.

Once again I awoke during the night. I went to his room and checked. He was high still. He corrected.  I went back to bed.  I wondered if he would drop. I wondered if he would go higher.  I worried. I tried to sleep but I worried.

Tonight he is back home. He will be in charge of his own care again. He will be the one to wake.  I will wake up just like I have for too many years.  I will wonder what his readings are but I will be able to roll over and go back to sleep. I won’t be kept awake with a low. I won’t wonder which direction a high will take even with a correction. I will simply roll over and try to sleep…but I will feel guilty because I can just roll over.

Diabetes care is tiring but I get a break.

I put in my time. I had 16 plus years of sleepless nights between babies and diabetes.  My son has had 16 years of diabetes too. He doesn’t get an end.  

As I said, he has become very conscious of his health and his body. He told me that he already has one faulty organ, so he has to make sure that he doesn’t have any more.

He is growing up.  He is a young adult now. He takes most things in stride.  I still wish that he could have an end to testing, injecting, carb counting, lows, highs and all of the rest.  Wishing doesn’t make it so. Feeling guilty doesn’t change allow us to change places.  This is just the way it is.   I will keep wishing for that day when I can say “that was the way it was.”

The Transition Year Troubles

Last week it was rough being a mother of a young man with diabetes. My son wasn’t in DKA or anything as horrible as that.  He was tripping up in the world of paperwork, bureaucracy and diabetes care.

Two years ago he decided that he was old enough to handle his diabetes care, appointments, and schooling on his own. He chose to move to live with his father and take over the responsibility on all of those fronts.  I was forced to stand on the sidelines and offer advice now and again when asked.

I was also left to order supplies for his pump on a semi-regular basis and this is where the trouble began…

I had placed an order for his infusion sets and cartridges.  On Tuesday I received a message on my phone.  It stated that coverage for my son’s supplies had been refused.  I was to either pay the almost $800 bill immediately or return all supplies.

What the heck? My son was under 25 with no insurance.  The provincial pump program was supposed to cover him. Had he fallen through the cracks? Did someone forget to do his paperwork?

I immediately began making calls and sending out emails.  I was sent a copy of the forms that should have been completed for him.  I called the woman at the insulin pump company back.   Slowly the truth began to emerge and it wasn’t pretty…

The pump company hadn’t received new paperwork for my son regarding provincial pump coverage since 2014.

His diabetes center had only seen him once per year but the provincial policy requires him to see someone three times per year.  He had missed most of his appointments.  They had warned him that doing so would result in lost coverage.  He never paid attention.

His diabetes center was for pediatric care and they believed that he had been transferred to an adult center.  They suggested that I contact his former doctor (whom my son felt was still handling his care).

I called his doctor.  I was desperate for some sort of help both in getting my son to realize how important his attendance at appointments were and finding coverage for his pump supplies.

His doctor would not take my call but did say through his secretary that he was continuing to care for my son.  Because my son is 18, his doctor felt that it was up to him to fix the mess that he created.  Fair point.  I passed the message along.  My son made the call.

It is a new week.  A glass or two of wine helped me to decompress.  My son is hopefully beginning to understand that while Mom is always there to help, being “of age” means that he has to handle some things himself.

He has a call into his doctor to set up an appointment and chat about what he can do next.  His doctor is willing to help him get things straightened out (him not Mom). He has booked an appointment with a diabetes clinic closer to his home to ensure that he can make the appointment.

Getting through the transition years

These sound like small things.  In our world they are massive but we will find out way through…and at least there is still wine.

Wondering what sort of diabetes coverage your province offers? Download our free coverage infographic.

Swept away and retired to a desk

Today’s prompt for Diabetes Blog Week asks what is that one thing that we are still clinging on to that we need to let go? What in our diabetes closet needs to be cleaned out?

Honestly, I was going to use a wildcard for this one. I thought it didn’t apply to me any longer.  Diabetes does not live with my full time any more so what could I possibly need to junk out? We cleaned out most of my son’s diabetes supplies when he moved.  Anything left here he needs when he visits. Obviously this was a topic that I was going to have to give a miss. Or maybe not….

sweeping up
Sweeping out the old

There is something that I have been working on for…cough, cough, almost….two…cough…years.  It is something that I need to let go of, clean out, sweep away. My challenge is to sweep away that need to know all and me hands on 100% of the time.  It is now physically impossible and thinking otherwise is emotionally draining.

I have to adjust to the role of no longer being that person in charge. Learning my new role as the person standing in the office listening to what is going on in the trenches but removed from the actual events is a huge challenge.

I no longer have to wake up at various times during the night to test my son. That has its own guilt.  I still wake up through the night out of habit but as time has gone on, I no longer wake in a panic wondering if he is okay and if he is testing.

I have gotten better at having him text me readings.  Originally I wanted to know every reading.  I would stay up to all hours just so that we could talk and he could tell me what his readings had been like.  That didn’t work. He did his best to be busy when I wanted to call and talk.  I had to get rid of that need to know. I had to learn that it was now truly his disease.

We still talk daily.  I don’t know his readings from day to day.  He calls me when he has a problem. We troubleshoot issues together.  I still work on being okay with the fact that I don’t know his A1c.  I still struggle with not being able to hook him up to the technology that I want him to use.  Sweeping out the DMomma who is hands on and replacing her with the DMomma who is just there to help out when things get a little messy or he needs a break has truly been my biggest challenge.

As I have have been swept out of the trenches, I found myself struggling to understand my place on the sidelines.  I worried that I had not prepared him enough. I worried that I would not matter any more. I worried that I would no longer have a role in that community of diabetes parents that had been my home for so many years.

Just like cleaning our house can give you a new perspective, cleaning out my role as a DMomma did as well.  I have seen my son thrive on his own. I have seen him put to use what he has been taught and develop his own confidence.  Standing back has allowed me a new role in the diabetes community and in my son’s life…and its not that bad!

The private parts of our life with diabetes

Day two of Dblog Week asks what are the private parts of our life with diabetes? What is it that is off limits for sharing with our readers or maybe even family and friends? What will you never read about on these pages?

This is actually an interesting topic.  Once upon a time, there was almost nothing that you would not read on my blog pages. I was an open book in part because I never thought anyone else would read what I had to say.  It was my personal journal. I shared my most raw emotions. As friends and strangers began to read, things began to change.

I won’t press publish when I am emotionally charged by an issue.

private parts of life with diabetes

I no longer write when emotionally charged. I still write posts with emotional attachments and passion but I try to wait, write, re-write, wait, and then post after the fact. I want people to understand some of what I deal with as a parent of a child with diabetes but I don’t want them to lose the point in a sea of anger or frustration.

I won’t call my children by name.

I no longer write my youngest son’s name and very rarely the names of anyone around me out of respect for their privacy.  My son spent a lot of his early life with diabetes in the spotlight.  I wanted people to know more about the disease but I never considered that he’d preferred anonymity.

He does.  When he turned 16, he laid down the law.  He wanted his privacy. He did not want to be featured in diabetes-related campaigns or any other displays.  I have learned to honour that.

I will talk about hot topics and trends.

insulin pump tips Diabetes Advocacy

Over the years, my life has changed and so to have my blog posts.  I continue to seek to educate people on their options in diabetes care. It is important for me to highlight social issues that impact people with diabetes.  

I will share our experiences but some parts of life with diabetes will be private.

Our life with diabetes has changed. It no longer consumes me 24/7.  It is now the burden my son carries mostly on his own.  I can no longer moan about sleepless nights but I will still share my feelings of guilt at being able to sleep.

I will still share many emotions and experiences in my blog posts. I try to keep them real and from the heart.  Yes, there are a few things that you will never read about.  There are still private parts of our life with diabetes. There are a few things that family and friends will never understand either but the important things that educate, advocate and raise awareness will always be shared.

Diabetes Advocacy also takes your privacy seriously and never shares your information with anyone. You can read our privacy policy here.

The many ways we feel guilty as a parent of a child with type 1 diabetes

I originally wrote this post in 2014. My son is now an adult but no matter what his age, the words below still ring true. After all of these years, my children continue to make me proud but I still occasionally feel guilty as a parent of a child with type 1 diabetes.

best mom pendant
Gifts like this make me realize that all is very well indeed.

As I started to read Ginger Vieira’s book Diabetes Burnout, I was hit by the many ways that I feel guilty as a parent of a child with type 1 diabetes.  Did I push my son too hard? Did I expect too much?

As I read further, I felt vindicated but I was also reminded of the overwhelming guilt that comes with being a parent of a child with diabetes.

Well-meaning people share with us many “reasons” that children develop diabetes and somewhere in the back of our mind’s ( well my mind anyway) we occasionally ask, was that it? Was that why my son developed this disease? Did I not breastfeed my son long enough? Did I feed him cow’s milk too soon? Was vaccinating him on schedule a bad thing? Was there a family history that we missed? I know that I didn’t feed him too much junk.  I know that it wasn’t two years of chocolate bars that did this to him but maybe that first time that he seemed off months before I should have realized that he was seriously ill and that it wasn’t just the flu?

Eventually, I realized that I couldn’t spend all of my energy feeling guilty about the “what ifs”.  Diabetes took up enough of my energy on its own…but that led me to a new source of guilt. 

Did I spend enough time with my child without diabetes?

feeling guilty as a parent of a child with type 1 diabetes

Had I denied my other son because diabetes took so much of my energy? My older son never complained but it was a question that popped into my head now and again.  We went to diabetes-related events and he met many new friends. He always seemed to have more fun than my child with diabetes.

I was there for my oldest son in his events and activities.  He knew that when there was an issue that required someone to stand beside him, I always did.  I was also there for the softball games, school events, report card days, sick days, and driving school.  I was pretty sure that I had successfully found a balance but a hint of guilt still tugged at my subconscious.

Did I focus too much on diabetes care when dealing with my child with diabetes?

diabetes supplies

As a parent of a child with diabetes, I also felt guilty as I wonder if I had achieved a balance with my youngest son? Did diabetes take over everything? Did he hate me because I punished him for diabetes-related offenses? Did he feel that I had robbed him of his childhood by focusing on blood checks and injecting when he wanted to play and forget it all?

My children seem to be well-adjusted. We have memories of family vacations and times spent with each other. We communicate regularly.  I guess I didn’t scar them too badly–I hope. I didn’t have to feel guilty about robbing my children of their childhoods.  Diabetes changed things but it didn’t destroy it.

I feel guilty that I can take a break from diabetes but he can’t.

feeling guilty when taking a break from diabetes care

One other area of guilt as a parent of a child with type 1 diabetes always seems to flutter on the sidelines.  I know I am not alone in with this one. I have heard other parents mention it. It is the guilt that comes when our children go away and take diabetes with them.  It’s that time when they go to the other parent’s house, spend the night with a friend or with grandparents.  It’s that time when they go to camp for a week or move away from home.

It is then that a new guilt moves in.  I no longer have to think about diabetes 24/7.  Oh I still wake at night. I still look at a meal and automatically count the carbs and dose insulin in my head.  Often, I still wonder what my child’s blood glucose level is.  I worry and wonder if he is taking proper care of himself while I have a break. 

It isn’t like I really have to be awake at night. When he isn’t home, I can enjoy that extra glass of wine without fear of dealing with a low later that evening.  I don’t have to remember to test after that walk.  I have it easy.  It’s not fair.  The guilt becomes stifling.

As a parent of a child with diabetes, I want to carry the burden of this disease for my son but I can’t.  I want to give him a break but I can’t even if I  get one! It doesn’t seem right. I must be a terrible parent…but maybe I am not.

When my son is with me, I help him with care when he wants.  When he has an issue and he is away from me, he calls and asks for help.  We talk about readings…when he is ready.  We talk about other things as well.  I work hard to make diabetes the last thing I ask him about not the first.

Your best is all you can do.

best mom pendant

Guilt doesn’t get me anywhere. It’s a backward-looking emotion. Life didn’t come with a guidebook.  My children were not born with a manual attached.  I do my best. We all do.  The guilt we feel as parents of children with type 1 diabetes must be released not harbored…and I do. 

I have made mistakes but my kids are okay.  They are strong.  My children are relatively healthy.  They are smart.  My boys do me proud. 

Don’t waste energy on feeling guilty as a parent of a child with diabetes. You cannot feel guilty about all of the things that weren’t perfect. Move forward and smile.  It’s the only way to go.

Having trouble moving forward? Remember to take life four hours at a time.

An infusion set mishap…It looks like I’ve been shot.

When you live with type one diabetes, you find humour in some of the strangest places. Like back in 2010, when a tickle fight ended in an infusion set mishap. Let me explain.

It was May and my son admitted that he hadn’t been spending his time mulling over the perfect gifts to purchase for his devoted mother for either Mother’s Day or her birthday. In some countries I am sure his actions would have constituted a hanging offense but in our house in meant that I tackled him, interrupted his Wii game, pinned him down and tickled him. (This was back when I still had a few pounds and an inch or two on him.)

“You’ve pulled out my site!”

The downside to this fun, when you have a child on an insulin pump who wears sites in his leg, is obvious only to those of us who live with diabetes.

After the screams of “I’ve gotta pee!!!!”, came the grumblings of “You pulled out my site!” Thankfully his insulin pump supplies are covered under our provincial insurance. It felt good to say “Well, just go and change it.” Once upon a time, I would have cried at the money that I had just wasted in a ruined infusion set even if it was in the name of fun.

Being a teen, my son was in no rush to change the site. I had visions of high blood sugars for the rest of the evening. The longer he waited, the less insulin he would get, the higher his blood glucose levels would climb.

Nothing a little tape won’t fix

Again, being a teen and being my son, he stated that the site was salvageable and he had simply taped it in place. I was worried. Was the site really still in?

Yes, he assured me as he headed off to the shower. His grumbling about being bested by his mother had been replaced by the comment that if Mom could wrestle him then wrestling with his brother should once again be allowed. It was discontinued after brother’s elbow met son’s eye and left a nasty shiner. I attempted to burst his bubble but he still was quite proud of his logic as he headed off for his marathon shower.

“I look like I’ve been shot!”

bloody infusion set Diabetes Advocacy

After he undressed he proclaimed “Mom, I look like I have been shot!”

What did that mean? He told me that there was blood all over his leg. I said that was it, the site was gone! He had to change his infusion set.

My son proceeded to shower and I never got to really check out the damage. He kindly left the dead and bloodied infusion set in the shower for me though. Ironically the same child was disgusted when he found it on top of an envelope later. I had taken a picture and left it for him. He told me that the site should be in the garbage! Um, who left it in the shower to start with? Oy!

Wondering if an insulin pump could be for you? Check out the pros and cons here.

Preparing for a new school year with diabetes

a new school year with diabetes

It’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 new 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 preparing for a new school year with diabetes.  Here are a few things that we think are important to remember.

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.

Before the new school year begins, arrange 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 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.

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 chaperone 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

A new school year is the perfect time to stock up on your diabetes supplies for school. 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.

Download our free list of some of the items that you might want to include when preparing for a new school.

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.

Relax and enjoy the new school year

My final tip is the most important…Relax and have fun! Make the year fun! Your child is a child first.  Plan ahead with staff regarding things like parties, extracurricular activities, outings and exams so that your child gets the most out of their school year.

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.  Help them to learn to live with diabetes in the most positive way. 

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

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

Raising Teens with Diabetes…a Book Review

Raising Teens with Diabetes Book Review Diabetes Advocacy

Raising Teens with Diabetes. A survival guide for parents” by Moira McCarthy arrived at just the right time for me. I had heard that she was writing a book and it had been published. Thanks to the interwoven world of Facebook, I had seen her posts in groups that I belonged to as well as comments from mutual friends. I was therefore really excited when the folks at Spry Publishing asked me if I would like to read an advance copy of the book.  

My son with diabetes is just a few months shy of 16.  We are knee-deep into the teen years and tips for handling drinking, driving, and letting go are definitely all things that I welcome with open arms!

Personal stories of parenting a teen with diabetes

Each chapter of this book opens with Moira’s own personal stories.  In chapter one she gets us started by introducing us to the world of “Hurricane Hormone” and advises us of the horror ride that both parents and teens are about to embark on.

Moira’s daughter was young when she was diagnosed with diabetes, so much of the book looks at burnout of both parent and teen after years of dealing with this disease.  As a parent of a child diagnosed at two, this was definitely a welcomed perspective.  

She does not exclude those diagnosed at a later age though or even those who were diagnosed in their teen years or later. Chapter three is dedicated to those children struggling with their adolescence as well as a new diagnosis.  Short asides, from people like Moira’s own daughter as well as well-known bloggers and the JDRF’s own Aaron Kowalski give a wide perspective on this topic.

Raising a teen with diabetes takes a village.

“Raising Teens with Diabetes” looks at family dynamics, the role of siblings, and the role of friendships–old and new with some great tips and pitfalls that many parents fall into. Moira warns of making your child’s friends the “diabetes police” and suggests ways to use friendships to help your child without going overboard.  She further touches on the more quiet or shy teen and how to ensure that they tell their friends at least the basics in diabetes management and care.

How to let your teen take more responsibility for their care.

As the book nears the halfway point, you are now beginning to learn how to set the stage for adulthood.  Moira looks at school and letting go–allowing your child to be more responsible for their care in a safe setting, setting limits and having consequences that fit the action.  

She talks about the rules for driving and how vital it is to stick to them. Since my son will be legally able to begin this process in a matter of months, I read keenly wondering if we can both stick to these guidelines and knowing how important they truly are.

When your teen starts drinking and dating.

This book even talks about sex! I instantly was hooked when Moira’s first suggestion when handling dating and then sex was “…go on every single date with them, forever and ever…and this will not be a worry.”  I loved it! My sons would definitely not agree however.

By Chapter 10, we are faced with another teen challenge–Drinking! It terrifies me.  My son is very private. He does not talk about diabetes.  He does not hide his testing or bolusing but he does not advertise it or talk about it either.  A few of his closest friends know about it.  His best friend has a good idea of what to do but who will help him when he and his friends decide to drink?

Use this book as a tool to talk to your teen.

This book offers a great chance to talk to your teen about these subjects as you read.  I would often bring up topics as they were covered.  “Did you know…” or “Wow! This book says…” were great conversation starters. We were even able to talk about erectile dysfunction!

In the early chapters, Moira’s warns that teen males exposed to tv commercials may quietly be concerned about this complication. My son shook his head and swore this was not something that he had remotely considered or knew about.  One problem overcome already!

Drug use was something that I had somehow not considered until it was brought up in the book. It is something that I have thought of and talked to my oldest son about but drugs and diabetes? It was not a topic I had ever considered…how naive was that! I was therefore really grateful to have the topic mentioned.  In modern society, it is definitely something that needs to be discussed and prepared for as much as all of the other topics.

I also had my eyes opened to a new view with the section on rebellion. Moira writes about the first time her daughter lied to her about a bg level and how things spiraled out of control until she ended up in ICU.

Her daughter said she got a test of “the drug she’s struggled with for years.  That drug is called freedom.  That day,(when she lied about a reading) she realized that I trusted her so much, she could pretty much do or not do whatever she wanted.  The idea of not checking was so delicious, she still says today she thinks she must know what drug addicts feel like when they try to detox.  She skipped testing more and more…And she told me after she landed in the ICU and almost died, as sick as it made her feel physically, the emotional high of DENYING diabetes any power in her life…made that horrid feeling all worth the while.”  

Even rereading this passage still makes me want to cry.  I “get it”. It hurts me but I “get it”.  I understand a bit more why my son “forgets” when he goes away from me. It’s not just about feeling so great that you forget you need to bolus/test, it’s about denying diabetes.  I wish that they could.

I appreciated Moira’s honesty when she noted that she had once thought that her daughter would never rebel.  That that sort of thing was something that happened to “other families”.  I have always known that this could happen to us.  I have also looked on to some of my friends and wondered, “how did they get such perfect kids? They never seemed to have any issues.”  I have also watched some parents struggle to do everything that they could with non-compliant teens and somehow manage to come out into adulthood with amazing young people.  I know that “this too shall pass” and “Raising Teens with Diabetes”  gives some wonderful tips on how to handle the rough ride until it does.

If you have a teen with diabetes this book is for you.  If you have a child who will grow up to be a teen with diabetes, keep this book around for later years. It will come in handy! Thank you Moira for giving new things to think about and a wonderful tool to refer back to.

Looking for more great reads? Check out our book page for suggestions and links to our reviews!