Being diagnosed with Type 1 Diabetes was a huge event in Jonathan's life. It was, beyond a month prior, totally unexpected and it changed all our lives forever. Yet another huge event followed almost immediately after. I'll give fair warning now, I am quite biased in the telling of this story and I have some very strong feelings about what transpired. In fairness to all involved I would like to set the record straight in advance: It is not my intent to attack anyone personally. Furthermore, my biggest beef is with a flawed system, not necessarily any one individual within it. I've really toned this down since I first wrote a draft for the local paper.
School was a hot topic during our week at the hospital because we all knew that day was approaching, and fast! There was some confusion at first regarding how his school-day care was going to be handled. Initially we were told that a nurse would visit him at lunch time to check his blood glucose and administer his insulin; this was a huge relief. However, shortly thereafter we were told that this would not happen because his school day technically ended before lunch and the program that provides care at school is only available during school hours. Needless to say, I freaked.
I lost track of how many people I called and how many times I called them, but it didn't take long before I felt like I was getting the run around. I met with his teacher, I met with his principal, I called the school board, I called the city, I called provincial offices, I called Canadian Diabetes Association, I called Juvenile Diabetes Research Foundation, I called Community Care Access Center, I called the Health Unit, I called Diabetes in Action, I called a whole slew of people and was continually referred from one person to the next. No one seemed to know how to handle our situation. It almost seemed like he was the only 4 year old diabetic in a school.
Even though his teacher was willing to assist Jonathan with his testing, this is forbidden by board policy. Even though there was staff at the school willing to test him and administer injections on a personal basis and not as a function of their job, they are not permitted to and could have faced severe penalties (likely termination of employment). It was very discouraging trying to work through the school system to establish support for our little guy. Phone calls to the superintendent of education to request a discussion about the related policies were only returned by an administrative assistant who was relaying messages which were along the lines of, "no, nothing can be done" and "the matter is not up for discussion". I was shocked and dismayed that our school board would turn it's back on a student in need.
Both my wife and I work outside the home and too far away from the school to travel there everyday at lunch, and the costs for contracting someone privately are outright prohibitive. The option of not sending him to school for kindergarten was on the table, as undesirable as it was.
Everyone wanted the best for Jonathan and everyone, with a few exceptions, seemed genuinely sympathetic to his situation, but it seemed that no one was able to help him. The school staff was inexperienced with diabetic students with the exception of one that was diagnosed at an older age and able to self manage, but they had never dealt with anyone so young. The principal, while only able to follow policy to the letter, reached out to her contacts to see what was being done at other schools, but there was not a solution out there either. Fortunately, out of everyone we contacted, we had reached a few key people that were able to come up with a creative solution that satisfied Jonathan's needs and respected the boundaries of the various organizations' policies and mandates. Finally, after about 2 weeks of chasing people down, we were able to solve the issue of lunch testing and insulin. This was a big step in that Jonathan would be able to attend school.
We still had the issue however of testing during class time. Despite our best efforts to start off his day with an insulin / carbohydrate combination that will carry him safely to lunch, there is always the possibility that he may face a dangerous low or high. And while the kindergarten teachers and a few other staff have been trained on how to detect symptoms by observation, this is highly inaccurate and in some cases not even possible. We provided glucose meters and test strips to the school, but they simply are not allowed to use them. The best we could do is "when in doubt, give a snack" and the nurse will correct at lunch if necessary.
Fortunately, the on-site after-school program isn't bound by school board policies in this matter. They are a separate operating entity within the school facility and they are allowed to test him. So in the afternoon, he can be tested whenever necessary, but the morning was still a gap. Thank God the school policies do not prohibit the school and latchkey staff from caring and cooperating. While daily testing is not practical, Jonathan is allowed to visit the latchkey office in the morning should the school staff feel that he needs to be tested.
Jonathan is loving school and we are so happy that he wasn't prevented from being a normal student. The last seven months have been stressful to say the least, but the reward had been a child that gets to live an almost normal life.
This is, from what we can tell, about as good as it gets in the school environment. It's not perfect, but it's working. It was hell getting there, and there needs to be a better standard put in place so that new diabetic students and their families don't have to all go through this.
Despite our very rocky start, I do have to give a big hand to everyone that is involved in Jonathan's care. The only real evidence we have that our set-up is working is that he is happy and healthy and being a kid. We collect all of our data, not every day is consistent, but we see positive trends and with the team's hard work and diligence his A1c went from 11.8% at diagnosis, to 9.4% at +60 days, to 9.0% 90 days later. We're told that 9.0 is a gold star for a 4 year old but all of us are looking to head for 8.5% by May.