Our little guy starting school was a source of great excitement in our household, and a source of great fear. We’d lived in our small town for a few years by this point, and we’d heard wonderful things about both the school and the school nurse. Rationally, I knew he’d be in the very best of hands, but it was the first time since diagnosis that we’d be handing over our son’s Diabetes care over to someone completely unknown, for hours at a time, and he was still so…little. I’d also admittedly made the fatal mistake of spending almost an entire evening reading horror stories of school-related misunderstandings and mismanagement one night (why do I do this to myself, really?) and so by the time his first day came around, I was a bit of a nervous wreck.
In our district, our son could begin a part-time pre-K program at 3. He was beside himself with excitement about starting – about making new friends and reading stories and playing in the playground. And as he headed out the door for his first day of Preschool that warm September morning, with his dinosaur backpack and a scrumpled up leaf (a present for his new teacher, who accepted it very graciously!), I knew it was time. But it didn’t make it any less scary.
There are some things, though, that you can do to prepare both yourselves and the school, to make that transition just a little bit easier. We started at home. Since about the age of 3 (so a year or so after diagnosis), we’d noticed that our son had developed a new sort of hyper-vigilance about his diabetes. What his blood sugar was. Whether he needed dosing. Who was going to take care of him. And so we started there, with one of our closest friends who’d come out to visit that the summer. As I dashed between the baby who’d poured milk over his head (daily situation) and the toddler who really needed his cereal right now or else he might spontaneously combust, I spotted my friend picking up the box of Cheerios and eyeing it for the carb count. “I can do it,” she said. “I’ve been watching you dose him all week. Don’t worry, I’ve got it.”
Milk mopped up, I stepped into the kitchen and watched her walk over to my son. “Do you know how to dose me?” he’d said, eyeing our friend suspiciously as she picked up his pump for the first time. “I do. Mummy showed me exactly what to do.” “Are you sure?” he’d asked, beady-eyed and worried. “I promise.” And with that promise, he was okay. Quick to worry, but quick to be reassured. It was the first time that anyone other family had handled his dosing, and he’d learnt that it could be okay. I’d learnt that it could be okay.
From then onwards, we changed up who would be dosing him and checking his blood sugar. We talked more about how he felt when he was high, or low. We paid more attention to how he acted. How he looked. We taught him what the colors meant on the Dexcom app – grey for in range, yellow for high and red for low. Which beeps meant what. We talked about what needed to happen when lows or highs happened. I wrote notes. Pages of notes. I researched school materials, and found these amazing ones by Beyond Type 1, which were truly a Godsend for us.
As for school, before he even started, we had an IEP assessment and then further IEP meetings. These were our chance to explain all the ins and outs of T1D to his caseworker, his teachers, and his nurse. Not just T1D in general, but our boy’s experience of it. They listened.
His poor teacher looked terrified.
We took the opportunity to reiterate again and again that this was a learning process for all of us, and that we wouldn’t be upset if things didn’t always go quite to plan. It was a fine line between highlighting the seriousness of the disease and not just terrifying everyone completely, and I think/hope that by the end of that first meeting, we had made it clear that we believed in everyone, and that we were, more than anything, grateful that they were taking this on. That we trusted them, and that we hoped they would trust us to be kind and helpful and supportive of them, too.
We highlighted the numbers that meant “we should probably get him a candy/some insulin soon” and the numbers that meant that they needed to do that, but right now. We talked ketones and Glucagon. We explained that we’d rather they call us with questions than they feel unsure or worried. We made and printed covers (based on this info) for two “low boxes” (one for the nurses office, and one for the classroom). For reference, ours contained candy, juice boxes, and Glucagon, with additional supplies like replacement infusion sets, alcohol wipes, Dexcom stickers, needles and insulin for the Nurse’s box. We amended this guide explaining what T1D was, and what they most needed to know. And, apologizing for the sheer volume of paper we were handing over, we sighed huge sighs of relief as they eagerly took our research and resources and promised to review them all thoroughly, with such sincerity that we had no doubt that they would.
We have been blessed with a team of people who have gone out of their way to make sure not only that our boy is always kept safe, but that he never misses out because of his differences. Every time there’s a birthday, or a project involves making something with food (wouldn’t it be nice to be back in Preschool?), his teacher makes sure that I have the carb counts ahead of time so that the nurse can dose him without any hiccups.
It’s a team effort – the parents who let us know what they’re sending in for birthday treats, and his teacher who sends photos of the nutritional information on a frosting tub from home in the evening, despite everyone having their own families to look after. The Nurse who starts with “Me again!” as she calls for the third time in a morning whilst battling a particularly stubborn low, and the Paraprofessionals who greet our boy each day and ask how his blood sugar has been overnight with genuine care. We are blessed, but know that not everyone is, or will be. And so my best advice is to reach out early. Prepare easy, digestible resources for everyone that will be in contact with your child, and be patient. Expect mix ups and wrong turns. Think back to when you first started this journey, and remember how clueless and unprepared you felt.
Everyone starts somewhere. Know that it’s okay to be scared. To worry every hour of every day for the first few days/weeks/months. But also know that as scary this whole new step is, it will be so worth it when you see how much your child will grow. How much they will smile when they come home with stories of their friends, their teachers, and all that they’ve learnt. And you know what? Sometimes you need a break from all this too.