Wednesday, March 24, 2010

Our education in attending school (and a smidge of proof that things are ok)

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.


  1. School, School, School...that is one toughie. I am sorry you had to go through so seems when these guys are diagnosed at such a young age that it becomes quite tricky due to their inability to self-manage.

    Joe was diagnosed at 3 years of age and I did have to give his insulin with snack and lunch...I worked nights so it worked out OK...and I eventually stopped working until he got to Kindergarten. Once he started K-garten a whole other "can of worms" needed to be dealt with and was situated within a few months.

    You are a trail-blazer my friend. Keep up the good work. You are making things safer for Jonathan and for those who will follow in his footsteps. I applaud you.

  2. We were so lucky. We have 6 t1's at our school. So our set up was already in place. At the time I didn't realize how great it was to not deal with school issues on top of everything.

    It is hard to believe that no one has another young t1 in a school in your area. Where are they?

    If you can... Advocate whenever possible. You never know who's life you will bless.

  3. Thanks Reyna and Lora!

    The kicker is, there are at least a few out there that we learned about through our working on getting Jonathan set up. Some stories of extreme lengths people had to go to, to ensure care for their children including relocating, leaving jobs, and even putting their kids in expensive private schools.

    I guess moving was an option, but we can't afford for either of us to quit our jobs and private school was certainly out of our reach. Really the only fall back position we had was for him to skip kindergarten.

    There is another t1 child in his class that enrolled about a week or two after school started. I don't know much about the case, as the teacher is obviously bound by confidentiality rules, but from what I understand he goes home for lunch with someone there for him. Not as many stay-at-home parents as there used to be though.

    Thanks again to everyone for your kind words and supportive comments. It really helps to know that there are other people out there that understand what we go through.

  4. I cannot imagine what you went through. All those calls! You are a rockstar. I'm fortunate to stay home. I can have nurses come and check my boys, but they know nothing of T1 and often would come late which caused the boys to miss recess. Once the boys started 1st grade they were able to test themselves and call me with their numbers and their carb intake. My 2 older boys call me twice a day, and my 6th grader goes to check my kindergartener for me a few days a week. I drive down on the other days.

    It is so true, you are blazing a trail for the others that will surely come behind you. In a couple years your guy will be able to check himself and it will bring great peace of mind. Congratulations, you have almost made it through the school year!

  5. As I read your story, I was reminded of our own efforts to ensure Jack's safety at school. My husband and I kept wondering why we felt like trailblazers. Jack was not the first T1 in the district or at the school, but for some reason, we had to jump one hurdle after another. We persisted and won, like you. So I really appreciate all that you've endured and your positive attitude now. I'm so glad that Jonathan is enjoying school so much. Makes it all worth it, huh?! :)

  6. Meri / Heidi, Thank you!

    Honestly, I never felt like a rockstar or a trailblazer, all I ever really felt was a bit of confusion over gaping holes in our "systems" and a HUGE determination to make sure that my son is safe and gets to be a kid and kindergartner. I still get pretty riled up when I think back on September but I know without a doubt that it was worth it and I would do it all over again for him.