A parent asks: “My kid is entering eighth grade and wants to take more responsibility for their diabetes and celiac management at school. It makes me a little nervous. How much should I be overseeing and how much responsibility should my kid take?”
Note: This article is authored by J.A. Horsburgh, a frequent contributor to Celiac Digest, where this piece first appeared in February 2023. It is posted here with permission of the author and Celiac Digest.
The true if somewhat predictable answer is “it depends” — on your kid, on the school system, on what kind of responsibilities we’re talking about. On the whole, I think it’s always better for someone to want to manage their own care than to need to do it when they aren’t ready or don’t want to. Ultimately, it’s your kid’s medical condition, and it’s going to be their responsibility for the rest of their life. It’s a good sign that your child wants to practice those skills.
One way to practice self-management would be to first take those on at home (if your child hasn’t already). Have your child run through the process of remembering to check their own blood sugar, deciding how much sugar to take to treat a low glucose level, practicing figuring out insulin doses, and checking ingredient labels for gluten-free (GF) foods. Meanwhile, you, as the parent, can practice being more hands-off. This will obviously look different depending on what medical responsibilities are at play here –- transitioning to self-management of celiac disease (CD) is likely to be simpler than Type 1 diabetes.
Another part of the self-management transition depends on what responsibilities your child already has. Is this a new diagnosis that you are all still coming to terms with? Is this something that’s been part of life for years? Or maybe it has, but you and the school nurse – not your child – are responsible for everything. That’s also going to affect how ready you all are for this transition. Unless it’s a very new diagnosis or your child does not practice any self-management at all (unlikely), chances are good that your kid knows their own needs and is more prepared than you might think. You can also go over strategies with doctors or support groups, or consult friends who might have the same condition/diagnosis but are at different points in the self-management transition. You should always get input and consider your options and plans.
It’s important to remember that the transition may have some bumps. If your child forgets her gluten free snack, or occasionally forgets his insulin dose—that is an important part of this process: it will help them learn that these things happen and to make a plan with you and their healthcare team for what they will do when that happens. Will the nurse keep an extra gluten free snack for them? Will they have reminders on their cell phone for when to administer insulin? If they forget an insulin dose and their blood sugar is too low or too high–there needs to be a plan for that: that is when they may need to reach out to the school nurse and let her know what happened so together they can figure out next steps.
There may be disagreements: perhaps your child doesn’t wish to check a blood sugar as often as you’d like, or you’re concerned that they won’t be attentive enough to their food choices while at school. You as the parent want to remain a backup resource for your kid, and a trusted one. The transition mentality shouldn’t be a callous sink or swim philosophy of “Okay, you think you’ve got this? Now go it alone (and suffer the consequences)!” You want your child to succeed and be proud of their ability to manage their condition. If something is too hard or your kid is struggling, you want to make it so they feel comfortable turning to you for help without feeling like they’re admitting defeat or will get in trouble.
The process will likely involve compromise. A good way to begin is to discuss your and your child’s specific concerns and wishes. Which responsibilities does your child want at school? All of them? Or maybe just a few to start with? Maybe your child is ready to manage their food and treat low sugars at school, but isn’t prepared to calculate or administer the insulin doses. Maybe your child’s school insists that the school nurse have a certain level of involvement (though as much as possible, your kid’s needs and not the school’s desires should be at the center of any agreements like 504 plans). It’s understandable for parents or school officials to want to oversee everything to keep your child safe, but being closely watched and always told what to do can also be hard on one’s sense of confidence and well being. Especially when your child is at school, it’s easy for well intentioned care plans to become constricting and frustrating because there’s often limited flexibility allowed, and the school nurse may not know your kid’s needs as well as you and your child.
If a child is ready to take on the responsibility of self-management but the school is not open to this, you might try to find a school staff member who will advocate for them. This is particularly important when transitioning from a school system where the child has already been managing their condition to a setting unfamiliar with supporting such autonomy. One school staff member in the Massachusetts public school system advocated for such a student: why, she asked, would the school require that a child who had demonstrated independence in self-care at her prior school step back from that–-particularly when the motto of the school was to foster independence? Self-managing a chronic medical condition at school can be empowering; and being granted that autonomy at school can later make the transition to managing the condition at college a smoother one.
All in all, a gradual transition to increased responsibility is the best choice here. Aim for self-management, even if your child discovers that they do need to keep sharing some responsibilities with you or the school nurse for now.
Bottom line: Try things out and respect your kid’s wishes. Be their advocate with the school. And be a resource to support them, not confine them.
–J.A. Horsburgh, guest columnist for Celiac Digest
An abbreviated version of this article first appeared in the Celiac Digest, February 2023, Volume 30, Number 1.
This article is posted here with permission of the author.
Disclaimer: The suggestions given here are not intended as a substitute for the medical advice of your physician.
Photo credit: photo by Vasily Koloda, from the website, Unsplash.com, photos free to use and share.
