My philosophy with school and T1d is that the best outcomes happen when you take the time to establish a diabetes team.
In middle school, besides the Naturally Sweet dad and I, our diabetes school team consists of our medical doctors, my children - yes, they are key players on our team, a 504 coordinator (our assistant principals), the teachers, the lunch staff, the bus garage coordinator and our bus drivers. Each person is instrumental in ensuring that our children get an equal and fair shot at academic success.
And if you haven't done this, don't fret. There is still plenty of time to open the communication lines and start.
To help start the conversation, each year I create/revise a 504 document that outlines the accommodations that my children will need to be successful at school. Since I know that our team is fully of busy professionals, I also create a simple stop-light chart of diabetes symptoms and blood sugar ranges that can be used at a glance. After updating the documents with current school pictures and symptom changes, I email both documents to our school 504 coordinator and request a meeting to review and acquire proper signatures from each team member.
During the meeting, our diabetes school team reviews not only the 504 document but also a health care plan, acknowledging with signatures, that our hospital creates that outlines the seriousness of T1d. The health care plan helps to legitimize the need for medical care and to also, connect our school to the endocrinologist - whom is the ultimate resource should anything happen to our children and I am unavailable.
In the early elementary school years, I met with each teacher directly at this meeting. My children were both so young that I was fearful of their ability to even communicate in general, let alone speak up about highs and lows.
I would (and still do) bring expired Glucagon to allow the team to try out an injection in a calm environment. The team loved having a chance to see the Glucagon and to know how it works BEFORE having to use it.
Because of my children's young ages (3 through 10 years old), the early elementary school diabetes team also included a floating Parapro that was assigned to assist with checking of blood sugars and counting carbs.
Our schools, like many around the US, did (and still do not) have assigned school nurses. Having a floating Parapro was a wonderful help to our team. Teachers need to be able to teach and secretaries (and let's be honest!) need to run the school.
Many people have recently asked me how we went about in securing a Parapro and my answer is simple: Establish a team and meet. Coming together with your team will help identify the need to have this invaluable assistance. In our case, the 504 coordinator listened to the concerns that our teachers had about being able to teach AND watch for sudden blood sugar spikes and drops. The secretaries mentioned concerns about the office chaos and being unable to immediately assist a child in dire need. Not to mention that the office is also the adjacent home to the sick room, which ultimately could make a child with T1d much sicker than they started upon entering.
When all of this was brought to the attention of the 504 coordinator, she was able to brainstorm for ideas. It was then discovered that an aide assigned to another student had room in her schedule to also be assigned to my children. In sharing services, we were able to accomplish what we needed to effectively keep my children safe.
At the end of the elementary school days, we also spoke to the new middle school coordinator and decided that our children would make the transition without an aide. This allowed us to start building in a bit more independence with our soon to be 5th grader and to also, teach the 5th grade teachers a bit more as they would become the main contact for care (not the Parapro).
The diabetes team would not be effective without communication. At the beginning of every year, I still make sure we exchange phone numbers, emails and even set up loose blood sugar testing schedules. Having us all on one page is what has helped to keep us successful.
I also want to share that there may be times where communication breaks down. If at any point that happens (and sometimes it does), don't struggle with individual team members. My best advice is to call a review meeting and go over what is working and what needs improvement. In the beginning, we had a lot of 'lessons learned' about lunch time, recess and PE, especially in first grade - our first full time/full week of school. That year, we chose to have three big team meetings. One in September, one in January and one right before school ended. As we were the only family in the building with T1d, this was a big eye-opener with setting up a plan for all future students. We wanted to get it right and make sure it worked. As it turned out, not much later and our oldest daughter was also diagnosed. I am still thankful that she was able to transition into a very smooth system. While it wasn't perfect, it was so much than before we started.
Yes, it is a lot of work and yes, I am exhausted each year. But it gets easier as the girls become older and especially as they have started to co-captain with me.
Not to mention that our schools now 'know' our family and through learning about successful T1d management have helped us transition to upper grades. Even though oldest daughter is only in 8th grade, her 504 coordinator has already started laying the tracks for a successful high school transition next year.
We couldn't do that without having our team.