Transitioning Care in the Teenage Years
By Katie Bacon
Katie Bacon talks with healthcare professionals, parents, and students about when and how to give children and teens more responsibility in their diabetes management
My daughter, Bisi, was diagnosed with type 1 diabetes at age six. A couple years later, I asked her diabetes care and education specialist (DCES) how we would know when Bisi was ready to take on more responsibility for her day-to-day care. She responded that by age 10 or so, Bisi would be mature and capable enough to do much of this work herself. “However,” she continued, “if you hand it over to her completely, you’re going to have to figure out how to take it back when she hits adolescence.”
Adolescence brings about especially rapid brain development and change, during which the brain is essentially remodeled and rebuilt. The last part of the brain to mature is the pre-frontal cortex, the part used to make decisions, plan ahead, solve problems, and foresee consequences—all essential skills when it comes to diabetes management. If you’ve given your child full control of their diabetes management, it’s going to be that much harder to take some of it back in adolescence, when they may need more help with decision-making.
Over the years we have slowly given Bisi more responsibility, without fully handing her diabetes off to her. She turns 14 this year, and we let her go out independently with her friends, as long as she has supplies with her, and we can see her blood glucose number through Dexcom Share. For sleepovers, I used to give the parent elaborate instructions and call them at night if Bisi went low or high. Now, I trust Bisi to manage on her own (though I monitor her blood sugar virtually and wake her up if necessary by using Find My iPhone). I used to attend all of her sports practices (which Bisi hated); now I drop her off (though I make sure the coach understands the situation, and that I have their cell number). Bisi is a heavy sleeper, and I want to make sure she gets as much sleep as she can, so we still take care of treating any lows or highs at night. With all of these changes, there’s still a safety net (if a digital one), but we’re slowly moving that net further away.
One of the biggest changes in responsibility happened when Bisi was 12, and she switched from the Omnipod to the t:slim insulin pump. With the Omnipod, it was easy—maybe too easy—for me to bolus for her and tinker with settings. I tried to always let Bisi know what I was doing, but that communication sometimes didn’t happen. As soon as she had a pump with tubing, though, she took over all bolusing and most carb calculation. Sometimes she will change her pump and CGM herself, but sometimes I’ll do it for her. I figure that she’ll have many years when she is the sole person responsible for her diabetes care; while she’s home with us, I want to shoulder as much of the burden as I can, while helping her learn the skills she needs to take care of herself.
I think the most important lesson I’ve learned during this process is that I really need to listen to Bisi—her ideas, her concerns, and her frustrations (I say this both in terms of diabetes and life in general). She pushed back against eating in a way that wasn’t working for her, and we have found a compromise. She told us she was ready to stop checking in with the school nurse at lunch time, and she was right. For several months, she worked to persuade us that she should switch from Omnipod to t:slim, and for her, it has been a great change. When I asked her when she thought teenagers should take on their own diabetes care, she responded, “When they want to.” Again, I think she’s right.
Wanting to get some other perspectives on how to handle this transition, I asked a series of questions to Deborah Miles, a nurse and DCES at Children's Hospital of the King's Daughters in Norfolk, Virginia. She is the mother of a college-age daughter with type 1 diabetes, who was diagnosed at age four. I also emailed with Dr. Melissa Buryk, a pediatric endocrinologist, and Linda Gottlick, a nurse and DCES, who both work at the Naval Medical Center in Portsmouth, Virginia (Gottlick answered the questions, in consultation with Buryk). Last, to get the perspective of someone who has grown up with type 1, I interviewed Clare Majewski, a student at Northeastern University who was diagnosed at age six. She went to Clara Barton Camp for children with insulin-dependent diabetes and later worked there as a counselor. Majewski’s interview appears at the end of the article.
How do you determine when a child or teenager is ready to start taking on more of their own diabetes care?
Deborah Miles: There really isn’t a magical age. Even those children who have been on top of things are still going to go through periods of time when they just don’t want to deal with their diabetes. Our doctors leave it pretty much up to the families to determine at what point they’re going to start handing over responsibility. I guess through experience both with my own child and parents of children I’ve worked with, I’ve seen that you need a blended approach: you keep your hand on them but still allow them the freedom to maneuver their way.
Linda Gottlick: I would say that this is so individual. As long as the child gradually starts to do certain tasks with the parents’ assistance, gradually making that leash longer, I think that is the key to success. In my experience it doesn't usually work out well when the child or teen is pushed toward taking on responsibility that they are not ready for.
What have you seen that has helped parents successfully navigate this transition?
Looking at the big picture and trying to maintain a balanced perspective on how small decisions will impact your child. For example, if I let my kid go to a sleepover and they don't correctly calculate their carbs that night, is that going to cause long-term harm? Probably not.
Letting your kid make some decisions (even if you don't totally agree with all of them).
Having regular conversations about what worked and what didn't, and then making a plan together based on what you’ve learned. These conversations might take place once a week after you’ve gotten in the swing of things, but not more than that.
Has thinking on when a young person should take on responsibility shifted?
Gottlick: A lot has been on social media about how even very young kids will text parents and then dose on their own. Of course this is individual. We see a lot of families assume that since their kid is super bright and does a lot on their own, they can take total charge of their diabetes management. Most of the time this doesn't work. It makes the kids burn out – and then parents are so surprised.
What are some tips you have for children and parents as they approach this transition?
Miles: Foster good communication. I get it: teenagers don’t necessarily want to talk to their parents. But it’s not a case of whether they want to or not; it’s a case of, this is what we’re going to do. Kind of like family dinners: you need to sit down and talk as a family.
Watch how you’re reacting to your child’s condition. Blood glucose isn’t good or bad, it’s just information. From a parent perspective, look at why you’re getting upset at your child. Is it truly because they’re staying high, or is it because you’ve given them all these tools and they’re not using them? Make sure to be involved, and not just from a medical standpoint. It also helps when kids are around other kids who have diabetes, whether through JDRF or Children with Diabetes or summer camp, so they’re not feeling like they’re on their own little island.
Personally, if I were to redo it, I think I probably would give my daughter more hands-on experience with me present. I have a type A personality, and I know how I want things; in that respect, I took on sole responsibility, and as long as she did what I said, we were great. But during those teenage years when she absolutely did not want to do what I said, it was a struggle.
Work together, learn together.
Don't make everything about diabetes.
Learn together that lows will happen, know that you are prepared and that
it will be okay.
Choices are based on previous experience; there is not just one way to do
Let kids see how parents troubleshoot other problems in life.
Anything parents should not do?
Don't foster an, "Oh poor me....the victim" mindset.
Anything else to keep in mind? I know that for me as a parent, this is a complicated time: Bisi wants more independence in all aspects of her life, yet she’s at a stage of development where she tends to be more forgetful (whether that’s forgetting to bolus, or leaving her winter coat somewhere).
Miles: At appointments, with the child and the parent there, we try to emphasize to the child: it’s your parent’s job to oversee you. It’s not that they’re trying to be a dictator – they know you know what to do, and they know you can do what you’re supposed to do. But there has to be some overseeing.
Parents who tell me: “This is Johnny’s responsibility. He knows what to do; why doesn’t he just do it?” My response is to say something like: “You and Johnny are getting ready to cross a really busy road, and you see that there’s a tractor-trailer barreling down the road. But Johnny doesn’t look and starts darting out. What do you do? Do you let him cross the road because he knows he should have looked? Or do you grab him back?” They look at me like, “What are you trying to say?” But it’s the truth! You always have to look out for your child, that’s your job.
Have new technologies (like CGM, Dexcom’s Follow app, Medtronic‘s closed loop, Tandem’s Basal-IQ) changed how people handle this transition?
Gottlick: Absolutely! Continuous glucose monitors (CGM) make it so we can say, "Try this and see if it works." Parents and families have been able to really learn so much more. Before CGM they could not know direct consequences of their choices until a few hours later when they next checked their blood glucose.
Miles: Technology can be a good way to bridge the gap between teenagers and their parents. Parents hate to ask about their child’s diabetes; they get the eyerolls, the attitude, the “why are you always on my back?” With apps, the parent can see everything that’s going on, and the child can have their life back.
What was your experience like in terms of taking over your own diabetes care?
Clare Majewski: When I was diagnosed, I was put on an NPH insulin regimen, with two shots of Humalog a day. I had a super tight eating schedule. I would not recommend it to anybody; it was such a headache, and it took a lot of involvement from my mom and my dad.
I think for me, getting a pump was kind of a big benchmark, an intuitive step in terms of taking more responsibility. I got a Medtronic insulin pump when I was eight. I was old enough that I was trained on how to bolus myself right away. Before that my parents would always give me my shots. My mom continued to draw up the reservoir for me and did my site changes for a few years. It was fun and nice to have some independence; I remember being excited about snacking. I didn’t have to do the hard stuff. I was still dependent enough that it wasn’t that stressful.
Then, when I was 12, I got the Omnipod. From that point on I was pretty much independent, though I would usually only adjust my settings if my doctor told me to.
What was the transition into more independence like for you, and what do you think it was like for your parents?
I think it was probably harder for my mom than for me. I think she worried about me a little more when she wasn’t in control. She used to give me four shots a day and count my carbs for me. But over time it got to the point where she didn’t do much on a daily basis. I think that made her a little nervous, and she felt guilty that she wasn’t doing more.
For me, as I started getting into the routine of having more responsibility on the Omnipod, I started picking up on the day-to-day stress of being more aware of my blood sugar and insulin levels, and calculating temporary basals for sports. I think the responsibility of having to plan more for myself and take on the day-to-day details was a stressor.
Diabetes is outside the realm of what kids that age often have to do. Are your parents completely hands off at this point, or are they still somewhat involved?
At this point they’re pretty much hands off. The last milestone was me taking on the responsibility of making sure I had my supplies and dealing with insurance. Even freshman year I would text my mom to ask her to do stuff for me. Honestly, getting my prescriptions filled and having to deal with all the red tape around healthcare stresses me out more than being responsible for my blood sugar.
Do you have any tips for teenagers going through this?
I would say definitely get a CGM if you don’t have one. Be patient, and know that being a teenager is the worst time to have diabetes, but it will even out one day. Communicate with your doctor a lot if you need to. I wish I had paid attention to my settings and tweaked them more, instead of not paying attention, and then over bolusing and exacerbating the situation when I had numbers that were out of range.
When you say that being a teenager is the worst time to have diabetes, do you mean physically, emotionally, or both?
I would say both. When I said it, I meant physically. My blood sugars are so much easier now, way more predictable. But also emotionally. Being a teenager is already so confusing; you’re going through so many life changes and decisions. It’s hard making regular teenage decisions, not to mention taking on more responsibility and making decisions every day about your health.
What about tips for parents?
This is what I would say to my mom: Don’t feel bad; try not to be too scared about your child having more responsibility, especially with the technology that exists today. If you trust your kid and if they know about diabetes and their health, it will be okay. I would say to my mom: Give yourself a break. She did so much, and still worries about it all the time. I know it’s impossible not to. But embrace the transition a little bit and facilitate it.
Katie Bacon is a writer and editor based in Boston. Her daughter, Bisi, was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.