Last week I wrote about how comforted I was that my daughter attended a preschool which was, essentially, in our backyard. Similarly comforting, despite a ten year lapse in time, was that last week's marching band camp was located adjacent to our (subsequent) backyard. We moved a few years ago, to a house with my daughter's then-elementary school behind it. Our realtor contacted us at the start of middle school to make sure we didn't want to move again but, as it turned out, it came in handy that we stayed put.
Band camp is usually held at the high school (a whole block and a half away from our house) but due to some construction in the building and on its fields, the week of camp was held at the elementary school behind our house. The trek is a little longer than to preschool since our current backyard is surrounded by an 8 foot fence. Lacking pole vaulting skills, my daughter has to walk all the way around the corner to get to the school. But it was still incredibly convenient, and comforting.
My daughter is obviously much more independent than she was in preschool, or even during the couple of years she attended this backyard elementary school as a 3rd and 4th grader. Yet marching band camp is a long, intense week in our town. It runs from 9-9 every day, except for an hour stop home for dinner. That's a long stretch of time to handle all things diabetes by herself; especially factoring in heat, exercise and the stress which comes with doing something new. As I wrote about a few weeks ago, the band directors are glucagon trained and have been familiarized with how to handle emergencies. But there's no nurse, nobody who's looking out especially for her diabetes, nobody to turn to if she needs to double-check an insulin dose and nobody to sit with her if she's low.
I could hear the band all day from my dining room table office set-up. This part was not always a perk. The brass section practiced the same 4 measure phrase for an hour and a half one morning while standing just on the other side of the afore-mentioned fence. But it was kind of neat to spy on the evening full show rehearsals on the back field. No matter the entertainment value, it was nice to know that, save an hour here or there for other commitments, I was next door and able to be her diabetes support system if she needed me.
In the end, it mirrored the preschool experience. Her proximity benefitted her just once, when she was able to make a quick stop home during the lunch break to swap out an almost-empty insulin cartridge from her pump. Beyond that, it was comforting to know how little I'd been needed after all.
We're just a couple of weeks away from the start of high school, which I don't want to think about. So I'm reminiscing about preschool:
We chose my daughter's preschool because it was a high quality one, recommended by neighbors. We liked that the day was weighted heavily towards finger painting, music and play but included just enough minutes of drawing letters and thinking about numbers to prepare the kids for kindergarten. We chose it because the teachers we met on our visits were kind and looked at their students as unique individuals. We chose it because the director didn't freak out when I told her my child had diabetes. We chose it because when my daughter visited I had a terrible time getting her to leave, despite promising she'd be coming back regularly starting the next week.
The school had one more selling point, though, especially valuable to a mom of a kid with diabetes who had never been left with anyone but grandma. This preschool (and the church in which it was housed) was in our back yard. There are lots of things we don't want in our back yard, but for preschool, we were definitely in the YIMBY (yes in my back yard) camp. We walked out the back door, through the yard and entered the door of school. I was quite literally a stone's throw away should a need arise. I could (in my imagination at least) mix the glucagon while running through the yard, prepared to stab my daughter's leg as I ran into the building. I could arrive at a moment's notice bearing vats of water, prepared to calculate a bolus to correct a high. Instead, this convenience turned out to be mostly for my own peace of mind: I got called to the school twice because she wanted me to be with her while she sat out low blood sugars. Otherwise she was fine.
I probably would have chosen this preschool even if it had been across town, but I'm glad I didn't have to. It was scary then to put her into the care of strangers for 3 hours a day. It was scary for her to have to ask strangers for help if she didn't feel right. It was scary to imagine what could happen if nobody (including her) noticed she was low and she got to a point where she needed urgent help. It was comforting to all of us (including the school staff) to know I was around if needed. And it was comforting to me as I sent her off to kindergarten, to know how little I'd been needed after all.
Little kid (pointing at Dexcom receiver on my daughter's belly): What's that?
My Kid: I wear it to keep me healthy!
(Little kid swims away/ continues eating popsicle/ asks about something completely different)
This conversation has repeated itself several times this summer at our town pool. These are usually kids who know my daughter's friends (neighbors, kids from camps they've volunteered at, relatives). These kids enjoy the opportunity to hang out with the 'big kids' for a while in the water or on the volleyball court. My daughter chose her stock answer at the beginning of the summer and so far it's worked every time.
These conversations are in significant contrast to those she's had this summer with new peer and adult acquaintances. These people want (or the case of the band director, for example, need) more complete answers to what the devices she wears and uses are, and how they work.
Through middle school, her social circle remained fairly static. As she starts to spend more time with the band kids, and with the people her middle school friends are collecting as they start new activities and endeavors, the explaining has begun again and the conversations have become longer. Recently examples include, 'why do you still have to poke your finger if you wear the dexcom?' and my daughter's personal favorite, 'what's your blood sugar usually?' These are a little harder to answer but they're thoughtful questions.
I'm glad her friends are interested in and concerned about her diabetes. High school means she'll be spending lots more time with her friends. The more they know, the better.
Though the conversation is certainly simpler with a 4 year old.
Our meeting a couple of weeks ago with the new school nurse also included the band director. Marching band is a serious endeavor in our district. There have been weekly 3 hour rehearsals since June. Band camp week in August consists of twelve hour days at the high school. Our fall weekends are spoken for. There will be weeks when my daughter spends more time with the band and its staff than she does with us, her beloved (and diabetes-familiar) family.
She's the first kid with diabetes to be in the band, so this is new territory. Both the director and assistant director agreed to be glucagon trained, which is great. More important to me, though, was to teach and then strategize so that they will never have to use that training. So we talked about diabetes. We talked about how steady exercise (like walking and presumably marching) can lead to low blood sugar. We talked about the importance of treating a low blood sugar as soon as it's noticed. We talked about the importance of checking blood sugar obsessively on days of important events (like band competitions) so that my daughter can use every tool at hand to aim for a in-range number at show-time. We talked about the importance of keeping diabetes supplies accessible at all times.
The last time we had to explain and discuss diabetes in this kind of detail was at our initial 504 plan meeting at the middle school . The goal of both meetings was, of course, to get the staff to agree to allow my daughter to do what she needed to do to take care of her diabetes. The tactic we used both time was conversation and education. More effective than making a list of demands, I think, is to talk about life with diabetes: what a low blood sugar feels like, how it's treated, how we use the tools we have at hand to prevent diabetes emergencies, how good my kid is at taking care of her diabetes with a minimum of disruption, and how much bigger a disruption it would be if an oncoming low turned into a medical emergency. This information, presented with a healthy dose of 'we've been doing this forever, and we know what we're doing,' seems to slowly but effectively shuffle people's preconceptions about how things should be done and lead to building consensus on a mutually agreeable plan.
The conversation with the band director led to a game plan, to be fine-tuned as events start to unfold. She will have her meter kit on the sidelines of all rehearsals. While the director is strict about nobody leaving the lines for any reason during practice, my daughter has permission to slip away to check if the Dexcom alarms or she's feeling low. The band director will carry glucagon and a spare meter in the first aid bag which accompanies him onto the field. At performances she will check her blood sugar during the time just before they enter the field and then hand her kit to the director or a parent volunteer as they line up. The uniform jacket has a pocket in which she can keep a roll of glucose tabs to use in an on-field emergency. The lines of communication remain open and if we have any concerns, we'll bring them up. Ditto for the band director. We left feeling comfortable with the plan.
Next up, how wear the pump and dexcom with the uniform, how to survive a week of band camp in the August sun and how to balance the busy fall band season with the first semester of freshman year of high school...