It’s that time again parents… back to school time! For many of us, hectic preparations include shopping for new shoes and school supplies or organizing the neighborhood carpool. However, if you’re the parent of a child with diabetes, “back to school preparations” include the standard needs plus so much more. To get a better understanding of this, I had the pleasure of chatting with mom extraordinaire, Lorraine Sisto, of This is Caleb.
Q: What was it like sending Caleb to school after his diagnosis? How did you prepare yourself, Caleb and his teacher?
A: Caleb was attending pre-school 2 days a week for about 2 ½ hours a day when he was first diagnosed with type 1 diabetes. His teacher and pre-school director both had family members with diabetes, so they were aware of the condition, but not able to actually care for him. So that first year, I was very involved. During that time, Caleb started using a pump, and I actually went in every day when he had a snack and I’d help check his blood sugar and bolus him when necessary.
Q: How have your preparations changed over the past few years?
A: Every year has been a little bit different in how we’ve approached the schools when preparing for Caleb. My mistake early on was not being a stronger advocate for Caleb. I assumed that just because the school had dealt with other type 1 students in the past that they really knew what they were doing and that they had his best interest at heart. Not that they didn’t care about keeping him safe or didn’t have his interests in mind; the reality is that as his mom, I am the only one that really has his needs at the forefront, and it is my job (and every parent’s job) to be that advocate and not be sorry for that.
I feel like I was a little too timid in the beginning. I deferred to the school and the nurses too much, and because of that things didn’t really go so well. I learned from that and now I prepare the school personnel by going in and educating them about what diabetes is and what it means for Caleb. I don’t take anything for granted; I assume that everyone I’m sitting across from knows very little and I educate them all in the same way.
There are things I can be flexible about but there are certain things I insist upon when it comes to Caleb’s care and schedule. Sometimes I’ll get feedback from faculty on these requests, suggesting that they’d rather do it a different way, and I simply say, “Well, what’s safest for Caleb is this way.” Although people have good intent, teachers often have a lot of tasks and students to consider, so these suggestions are understandable. I’ve learned that I have to be the person that says, “I understand that might be easier, but it’s not better and it’s not safer for my child.” I’ve always received a positive response to this approach.
Q: In addition to the above, what have you found that works particularly well or is there anything you don’t think you’ll do again?
A: I didn’t have a 504 plan for Caleb when he was in pre-school or kindergarten. Initially it was because he was in a parochial school and I didn’t understand what was applicable in private schools. Then in kindergarten, the administrator suggested that Caleb didn’t really need one since he was so young and didn’t have to complete any standardized tests. That’s a mistake in my opinion. Everyone should have a 504 plan to protect their child. It prepares all parties involved in case something comes up, because let’s face it; something is likely to come up. With a 504 plan in place, there’s no confusion. Everything has been agreed to in advance and it minimizes debate.
The other thing I’ve found that works better is to set up preparations and guidelines sooner rather than later. Our school district encourages us to meet with teachers and faculty a day or two before school starts. However, waiting to discuss arrangements this close to the start date can often be too late. It causes me a lot of stress since I don’t know what to expect, what the schedule will be like, how much the teacher knows, etc. This year, we met before this past school year ended so that we could get key elements established before schedules and plans were set in stone.
Q: What do you feel is the most important thing for parents who are sending a child with diabetes to school to know?
A: One thing that is critical to Caleb’s safety is where Caleb does his testing. Something that made that kindergarten year bumpy was the fact that his testing was done at the convenience of the nurse and in the nurse’s office. We changed that in first grade to allow Caleb to check his sugars wherever he was and whenever he wanted. Instead of his BGM being kept in the nurse’s office, it now goes where Caleb goes. I will not negotiate on where he checks his sugar. Not only does this safeguard his learning experience because he spends less time away from class, but it’s also safer for him. If he does need to regulate his blood sugar he’s able to take care of things right then and there, instead of having to walk somewhere for assistance.
Q: If you had to guess a future occupation for Caleb, what would it be and why?
A: Caleb has many life ambitions, but right now he has an affinity for science as well as anything that’s tiny, particularly babies. It’s like he has this baby radar and can always find them when they are in the room or in close proximity. Plus, he loves playing with his little cousins, so I just see him going into the pediatric medical field. He’s got this tender part of him that really feels for anyone who is troubled in any way, emotionally or physically. I just see him having that skill with kids, being able to relate to them and what they are going through. But who knows – he may end up being a stand-up comedian!
I said it to Lorraine before and I’ll say it again, humor combined with empathy, could you ask for better qualities in a person? I was fortunate enough to experience those traits firsthand as the second part of my interview was with the muse himself. Check back later this week as Caleb shares what it’s like to be a young student with diabetes.
My sincerest thanks to Lorraine for sharing her story and experience with us. As a mother preparing for “back to school” time myself, it was enlightening to hear just how different the experience can be for the parent of a student with diabetes. The strength and patience so many d-parents demonstrate when it comes to ensuring their child’s safety at school is beyond remarkable. Caleb is one lucky kid!
Disclosure: Lorraine Sisto received no compensation for this post. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.