All Children with Diabetes are still not safe in school

school1It has been over 15 years since I was first asked to take part in discussions surrounding the issue of children with diabetes in schools.  I still speak publicly on the issue. I still assist parents but I honestly thought that after 15 years, more insulin pumps and other awareness activities that things would be vastly improved–that all children would be safe in school.

Things have changed.  Years ago, very few school had policies in place protecting our children with diabetes in schools.  Very few educators knew their roles and parents struggled as well.

Today there are provinces that  have stepped up to the plate offering guidelines and even legislation surrounding this issue.  Sadly there is still a long way to go.  There are still parents who do not feel safe sending their children to public schools.

I once looked to the US as a standard to achieve.  The rights of their children with diabetes are protected under the American Disabilities Act.  That had to count for something!  A lawyer friend of mine reminded me that this was a just a law.  Enforcing it could often be just as frustrating and overwhelming for families in the US as it was for families here in Canada.

The moral? Keep fighting. Keep educating, Continue helping and that is what I am doing.

Many years ago, just after a change in rulings on the Disability Tax Credit, I met a wonderful lady. She worked for what was then called the Canadian Diabetes Association.  She was there first formal advocacy employee.

Our sons were of similar age.  She listened to our struggles and empathized.  Over the years we have worked together on certain projects and simply managed to touch base now and then to see who the other’s family is faring.   The yesterday she sent me an email asking for help.

She too is still working on the national issue of safety for children with diabetes in schools.  There are still many families who are fearful of sending their child with diabetes to school.  There are other families that send their children to school but are constantly at odds with the system to achieve optimal care for their children.

This saddens me greatly.  If you are one of those families that are still having issues with your child with diabetes in school, please comment or message me (advocacy@diabetesadvocacy.com) with your email address. I will pass your information along to my friend and she will contact you. Hopefully together we will be able to highlight the problems and finally work towards a resolution to this issue for everyone.

 

 

It Will Happen and It will be okay–Transitioning to Adult diabetes Care

Jump day
by John Haig

It will happen and it will be okay. That’s what I would tell myself if I could talk to the diabetes parent that I was 15 years ago.

You see, once upon a time I could tell you what my son’s bg level was at 3am. I could tell you what his reading was before breakfast. I knew if he had run high or low during school. I would be able to give you his pre and post supper glucose readings. I knew it all.

I knew when his last site change was. I knew what his last A1c was. Years ago, I could tell you when his glucagon kit was going to expire and how many carbs he ate with his last meal.

Today, I can tell you that my son does test his bg levels. His last site change was just the other night. I know this because he asked for my help.  I know that he sees his diabetes doctor again in April. I know that he has some insulin in the fridge.

I have no idea what his last A1c was. His current basal rates are a mystery to me. It’s a real challenge for me to use his insulin pump.

Years ago, I would never believe that I wouldn’t know these things. I swore that I would always test my son at night as long as he was in my house. I would be hands on in my son’s diabetes care  forever. I was certain. I was wrong.

If you are like I was, you are having a stroke reading this. You are probably thinking…Not me! I will know everything regarding their diabetes care always! I thought so too.

For the bulk of his childhood,  I knew every carbohydrate that entered my son’s mouth. I wrote down every exercise that he did and how it impacted his readings. I micromanaged my son’s type one diabetes like nobody’s business. His care would take me  40 hours per week.  It literally was a full-time job. Keeping my son alive and healthy was one of my top priorities.

The health of my children is still very important to me but this strange thing has happened–they have become adults.  As an adult, my son has asked that I don’t test him at night.  Sadly he wakes up a lot during the night now and tests himself.  He doesn’t see the sense in bothering me as well.

Because my son is an adult, he comes and goes when he pleases.  He treats his lows at work. He programs his pump while he is at school.  My son is completely in charge of his diabetes care.

It was terrifying at first I will admit. I had a need to know.  He had just as strong of a need for me not to know. He would be vague with his answers about bg readings if he answered at all.  It didn’t matter if I was mad or upset.  It was his condition to deal with and he would quietly show me that he could handle it….and when he couldn’t he would ask me.

As I have watched him handle his diabetes care,  I have been amazed.  We still occasionally share carb count guesses. I will look up the carb counts in certain food for him.  I will suggest a temporary basal when he is working long hours.  He will tell me what he has already done.

My role in diabetes care is now  on the periphery.  It shocks me that I have managed it but I have.  One day you will step aside too.  It will be hard.  How far you step will be between you and your child but eventually you will no longer know how to work their insulin pump either.  One day you won’t know their A1c but they will still call you when the going is rough–for you or for them.  For me, that remains a  huge comfort.

I have gone from the most hands on parent on the planet to an average mom.  Diabetes no longer is in my every thought. I now only think of it every few hours.  The most amazing thing is that I am somewhat okay with it all.  Don’t get me wrong, the control freak lives on and would love to know more but my son is an adult.  As a young adult, he has taken ownership of his diabetes and Mom is only allowed glimpses when he deems it okay.