Is it the school or the teacher that matters?

This post is nothing to do with education as I believe that when you have a young child with T1D their safety and your sanity with allowing someone else to have control over your little ones life is the first thing you think about. I also should say that this isn't a education blog.....

Anyway our T1DD turned 4 years old this year and as you know 4 means the start of the official schooling program. After living and breathing everything T1D for the last year and a half just making sure everyone wakes up in the morning you can imagine how our heart rate started to run when the thought of having a teacher who probably has no history with T1D not to mention having another 20 children to manage.

My wife and I both knew, well I knew it had to happen and my wife didn't want to allow it to happen but we started with taking a look around our area for kindergarten's that had availability to school our daughter. After trawling through a number of them and realising that it would be difficult to find somewhere to not only school our daughter but to take on the responsibility of managing her T1D.

We gave up on the traditional stand alone kinder and went to a privately run day care centre that also had a kinder program. To our surprise when we enquired and were expecting a lot of questions about what T1D is we were met with one of the carers saying that she was T1 also. I could feel my wives heart rate lessen but what she didn't take into account was that as they were a private day care centre the fees would equal $87 a day and the food provided by the centre would not be ok as the training process to get the teachers to understand carbohydrate counting would take a very long time. Much longer than we had. We left thinking that this could be our only option and put her on the waiting list for the following year.

A month or so later, unexpectedly, we received a call from the very first kinder that we applied for informing us that a position had become available. We reconfirmed again before accepting that they were happy with learning how to manage our daughters T1D and they said that they were more than happy to learn all they needed to. A rush of relief and gratefulness washed over us and we assured the director and teacher that we would provide all the training and support that we possibly could to make sure that this was going to be a success. We also ensured that both my wife and I would be on call for any questions no matter when. All we wanted was for the teacher to feel comfortable with knowing all she needed to about the management of our precious little girl.

Knowing that I have a wealth of practical knowledge that I can pass onto the teacher we had to get the fundamentals done first so we organised our daughters diabetes educator to come into the school before the start of term and go through what Type 1 diabetes was, what the processes were for treating highs and lows, what carbohydrates are and what effects that have to blood sugar levels. As this was the first session the fundamentals were enough to try and take on board. The next stage was to start the process of teaching about the specifics about how we manage our daughters T1D.

Luckily just weeks earlier we started on the new Medtronic 640g insulin pump. To say that the difference between the usability on the older Veo model and the 640g is worlds apart is an understatement. Once you know the key words like bolus and basal it is as easy as following the instructions to work the functions on the pump. The home screen gives you all the necessary information to make decisions quickly. This is extremely important when you think that there are another 20 children in the class that still needs the attention of the teacher.

Now combined with the integrated CGM system with the SmartGuard technology this is the piece that allows us to sleep at night and also allows us to know while running and playing or playing play-do or learning your ABC's we can be assured that the pump will stop well before it becomes dangerous. Now we began by telling our daughter that no matter what she was doing if her pump alarmed then she was to stop and tell her teacher so that the appropriate action can be taken. Unfortunately due to kids being kids and not wanting to stop what they are doing she decided to ignore the alarms for the first week or so but with reinforced messaging from both the teacher and ourselves she understood the importance of making herself known in the sea of children as it is her life and health that comes first. Even more importantly with her making sure the teacher know that something was happening she and the teacher are able to talk to the other children in the class about what the pump is and why she has to test her blood and why she had to count her food. These chats and education for the kids in the class now see each and every one of them looking out for her and my wife has now walked in numerous times to one of our daughters friends running up to her saying that her pump was going off and she needed some sugar. Some great awareness starting early on all hoping that a small amount sticks and will make a difference in the future.

So to go back to the initial question is it the school or teacher that matters and I honestly do believe that general knowledge can be taught but it takes a special person to be able to go our of their way to go above and beyond their daily duty so to put it simply in this instance the teacher has made all the difference.

Being alone can be scary

So it isn't often that I am scared but unfortunately I had a moment that actually scared me greater than any horror movie could and I honestly believe that if it wasn't for the little device that sits on my hip 24x7 then I wouldn't be able to tell this story today.

So in my job every now and again I have to leave my family and travel interstate to attend meetings and conferences. I know what your thinking, tough life being able to fly around the country stay at nice hotels and eat at nice restaurants at the company's expense, and your right it isn't tough however when traveling with T1D is can be easy or it can scare the hell out of you.

In this instance I was staying in Melbourne alone in my hotel room and it was the first night of a 4 night stay. I and my colleagues had been out for a quick bite to eat and I had also had a pear cider which went down really well. I calculated the carb intake and bolused for what I thought I needed. Something that I have done day in and out for the last 9 years. Everything seemed to be going fine and I retired to my room to ensure I got a decent sleep before the big conference started in the morning.

As always I checked my BGL both on the CGM that I wear and also do a blood test. Both were about the same and was in the 8's which is perfectly normal. I also check to see if there was significant insulin on board as if there was I would have to be wary of what may happen in an hour or so if my BGL was to drop. Once again nothing out of the ordinary. I prepared for be and for the following day.

Now I didn't know the time during the next event however I look back and  realize it must have been around 4am but I woke to sever alarms and vibrations from my 640g insulin pump that was running the SMARTguard technology that predict lows from happening and shuts down the pump. I had obviously been having a drastic low in my sleep and missed the meek and mild alarms that note that something is going wrong. I remember I woke hallucinating that someone was in my room and yet I couldn't move in my bed for some reason. After what seemed like hours but was probably only minutes of trying to work out what was real and what wasn't I was able to get up and stumble around the small room. I do note that in the beginning I continued to hallucinate and dream to an extent because (and I recounted this to my friend later that morning) that he had broken into my room and for some reason I had been able to force open my sliding door and force him out and almost push him off the balcony. I know scary huh???

After coming back to reality and the alarms continuing to sound I finally realized what was happening. I was having a severe night time hypo. My 640g had predicted that I was going low and had suspended delivery of insulin of my pump when I was in the 6 mmol's. Now what happens with the prediction because your body still processes what you have the prediction software shortens the curve of the low but can't stop it all together. With out the device alarming and doing its job perfectly I would envisage one of 2 things happening that night -

1. The night time hypo would have continued  and the drop would have been even more sever and an ambulance would have been needed to ensure I was ok and awake
2. And this is the scary one. I don't think I would have survived and never have awaken again.

This sound melodramatic to someone that doesn't live with this disease but I can tell you those that live with or lives around this disease knows that people still die from the complications of T1D and the unknown piece that a lot of general people don't know is that a lot of the death that occur is at night when you have no idea it is happening.

I thank god that a company that I have trusted my life to for many years with their technology on my side have created the 640g which allows you flexibility and security so that life can continue.

What would I tell my younger self....

This is actually a difficult question and one that I have been thinking about for weeks now. It is difficult as if it was possible  you would have to be careful not to give too much information that you would stop yourself from living but enough information that could make life easier and safer.

Over 25 years living with T1D I have done some stupid stuff and I am now doing things that I am very proud of and they are the type of things I wish I could have done right from the start.

• I have not tested for days on end through my teens,
• I have gone out on binges with no one around knowing the dangers of what it could mean if I were to have a severe low or high while passed out,
• I have argued and not listened to family and doctors when in hindsight I know they were trying to make sure I was doing all the right things,
• I have never missed an injection. Even though I didn't test I knew that insulin was my saviour,
• I started writing this blog. Even though it is only my thoughts on a page and the details of a life so far with T1D it has allowed me to reflect on what it actually means to have T1D and how things continually change,
• I haven't been afraid to do what I have wanted to do,
• I have seen GP's and specialists come and go. All of which had their own ideas on what would be best and to tell you the truth not many of them have asked what I think (must be because I only lived this disease rather than study it for a few years)
• I have started a family with the naïve thought that since I was the only one in my family to ever have T1D then I would hold that to myself and no one else would have to bare the responsibility that this disease forces on you
• I have begun to try and teach my youngest daughter, who developed T1D in 2013, that T1D is going to be with her for a long time and even though she doesn't know why we do the things we do we do them for her benefit and out of the most loving part of our heart
• I have finally realized that even though there are more communication methods in which we can all use living with T1D can still be a very lonely disease to live with
• I have seen that I am not the only one living the injections, calculations, fear and happiness day in day out. We are still a minority in a very large world however we are not alone
• I have struggled to get medication  and supplies having to sacrifice other things to ensure that the things that keep us alive are available
• I have been lucky that I finally found a Endo who understood me and put me on the path to pumping. Something that I will never regret
• I have the joy of being an Ambassador for a world leading company who is making life easier and safer for all T1D's willing to make a change and have a little device attached to them 24x7. It really is the smallest of concerns when you see the benefit to living that it gives
• I have been able to tell my story to small groups and to large groups all in the hope that I am able to help educate people that there are different types of Diabetes and it isn't just a case of not eating sugar
• I have a pump and technology now that will not only deliver the life saving hormone that my immune system sort out and destroyed but it also has the smarts to be able save my life. If you don't know what I am talking about it is the Medtronic 640g with Smartguard.

I suppose this list could go on forever however when looking back I think I would tell my younger self to be who I am but to respect T1D. It is something that will be a part of you for the rest of your life and as much as you have days where it will take centre stage it is something that you learn to live around and it shouldn't stop you from doing what you need and want to do. Oh and get into helping others realize that their not alone a lot earlier than I have.