It has been a while since I have done a blog but as it happens it doesn't mean that life with T1D has become any less important and in fact it has become more important as I have kicked over 27 years living with this disease and my daughter has now been living for over 3 years from diagnosis.
I am going to focus on a process that we have been going through with my daughter because this year she has started school. An exciting and nervous time for all parents as it signifies their little baby taking the first step of independence.
The usual start would see uniforms being bought, school bag being packed, lunches being made, hair being perfectly brushed and shoes being polished. On the day the nerves for both parent and child are high but for completely different reasons. Children are excited but nervous as they don't know what is to come and parents are nervous as there now not the ultimate dependency.
So you would agree that it is a big milestone but now with all of this add the worry of leaving your baby at school with people who have never heard about Type 1 Diabetes and having the responsibility of teaching the teachers how to keep your child alive. I can tell you that this is a daunting task.
Our process started last year in speaking to schools about there awareness of Type 1 and also to find a school that was comfortable in taking the responsibility for managing this chronic disease during the busy school hours.
We ended up settling on a small school with an awareness but in no way clear processes around managing T1D. The school had a grade 6 student with T1D however at 11 years old the child was capable of managing their own diabetes including blood glucose tests and injections. So the understanding on the actual day to day management had to be taught. We began, with the help of the class teacher and the principle, with an overall information session for all teachers that will have responsibility of care throughout the year. This session saw just how much the general population have been skewed towards the majority in Type 2 Diabetes as the understanding that T1D is a chronic disease was not evident.
So the first day of school arrives and along with the uniform, school bag, lunch, hair and shoes the survival bag was created and carbohydrate amounts were written down on each item in the lunch box. The survival bag consists of blood tester, ketone tester, hypo treatment foods, Glucogon pen and a spare set change and sensor change.
Having the Medtronic 640g pump with SmartGuard would become our godsend because instead of having to teach the teachers how to measure and give manual insulin injections they just had to learn the management of the carbs, activity and blood glucose levels. Even this is a big ask for any teacher. It was decided early on that no day would start without the CGM sensor in place with Smartguard being active. This would give both ourselves and the teachers peace of mind that there is safety in place when BGL lowers of increases. It gives teachers a direct view on what is happening at any given time.
The school days through out the first term is all about on the job training and we are seeing that the physical processes are just a small part of the puzzle. Teachers have to learn about activity, trends and the effects that different carbs will bring. As we live with Shiloh we know that certain circumstances will mean she needs carbs or insulin above or beyond the standard process. Trying to get the teachers to understand this is something that will come in time, well we hope anyway.
Another aspect we are tackling is trying to see if there is the ability to have a full time Teachers aid appointed to help as at the minute my daughters mother has to stay at school to help teach and monitor but without her there it is a very large responsibility for the one teacher. Discussions with the teacher and the Principle have everyone in agreed that an aide is required however the initial response form the state government authority says that as T1D isn't a life threatening disease then it doesn't warrant the help.......... I know I can hear you all now as I had the same reaction.......... After hearing this I set to work taking a look at what the departments actually deems as a condition that requires help. Taking a look through the detail on the departments website I found that in black and white it is written that T1D can be life threatening and that aids are available for children are too young to manage everything themselves responsibly. Unfortunately it is still a process to have a case raised with the department of education and have obtained letters of recommendation from all of our doctors and past kinder teachers to prove what it is actually like to manage a 5 y/o that has hypo unawareness and how much constant attention is needed to ensure maximum learning can be obtained while managing all aspects of T1D.
My opinion so far is that it takes time and effort both physically and mentally to be able to make sure life as we know it continues and at every stage in life it will take someone who cares above and beyond to help. We have found a school that is doing everything we can and will continue to push to make sure there is help along the way.
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