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Fostering Independence in a Child Living with Diabetes

D-dad John Crowley offers fatherly insight

Laura Kolodjeski of Sanofi US DiabetesLaura Kolodjeski

I am often moved by the devotion of parents with children living with diabetes. From counting carbs, to middle-of-the-night lows, to lobbying for appropriate care at school, they are continually called upon to be strong for their kids. I can only imagine their thoughts and feelings as their children grow up and start assuming more responsibility for their own diabetes care. I’m sure the transition into life as an adult living with diabetes can be a challenging time in the parent-child relationship. D-Dad John Crowley recently experienced this transition with his son and I’d like to share his story with you today.

In August 2000, John’s son Josh was diagnosed with type 1 diabetes and spent three days in the hospital. “The people at the hospital were great; they worked to teach Josh about diabetes care in a weekend,” John recalled. “Josh was a star pupil. He ate up all the adult attention and showed them he could do his own injections, and understood the basics of diabetes care at 8 years old.”

John and Josh Crowley
John Crowley and his son, Josh

John vividly remembers their first night at home. “The first time we had to give him a shot at home, I think the reality of it all set in and Josh absolutely refused,” John said. “I remember him backing away from the table, backing down the hall and backing into the bathroom. Of course we were frightened parents, this was all new to us. We learned a lot in a short amount of time about how to let him deal with living with diabetes. It was one of those learning experiences we had to go through. We managed and he did really well.”

From early on, Josh was very hands-on in his own diabetes care. “In our family, diabetes primarily became my responsibility to watch over, but very quickly Josh demonstrated not only a desire but a capability to manage so much of it himself,” John said. “He didn’t want anybody else giving him his shots, so we’d watch and make sure he didn’t have any trouble. He did great. Next he wanted to draw up his own insulin dose. We’d check it and he was right on the mark.” John soon took on a role as what he calls a “diabetes parental adviser,” providing support and encouragement as Josh made his own decisions.

“At times when I tried to take over his diabetes management, I could tell that was damaging our father-son relationship,” John said. “For example, if I stepped in to do anything that he could do for himself, such as counting carbs or telling him to bolus before a meal, I could feel his resistance and resentment almost immediately. I could see that the long-term plan was for Josh to own his own diabetes care, rather than me owning it. I knew there were going to be days that I couldn’t be there, and eventually every day, as he was going to live on his own. In the end, I feel like his diabetes management may be better if he feels like we have a good relationship and he can trust me. It gives our relationship a better chance to be positive and to not feel like I’m the cop or the diabetes rule enforcer.”

Having support from healthcare professionals has also been helpful in establishing a foundation of independence for Josh. “We felt very empowered by our endocrinologist,” John said. “He made us feel like we could make small adjustments if we needed to. I remember it took us a while to get Josh’s insulin-to-carb ratio right. Josh was a big part of figuring that out. We’d look at his numbers together and see when he seemed to be running high, and talk through why we thought that was. We’d make adjustments and then we’d report back to the doctor about what changes we had made. The doctor would tell us if he thought we got it right or sometimes he’d make further adjustments. It was a great team feeling.”

A Certified Diabetes Educator® (CDE®) also provided support, offering insight to alleviate John’s concerns. “We met a CDE in our neighborhood who lives with type 1 and she became a great resource for us,” John said. “When Josh was in high school, I was concerned about his seemingly lackadaisical approach to diabetes management. His A1C seemed high to me, so I brought it up to her one day. She told me, ‘John, sometimes teenagers are often a lot higher than that so you can relax a little here.’ That was great perspective. I felt like, while he wasn’t doing as well as I would hope, apparently he was doing OK. That allowed me to take a deep breath and be patient until he came around and he did.”

When Josh did need help, he knew he could turn to his dad. “After high school, Josh was preparing to do some volunteer missionary work, and there were some requirements for his A1C to be under a certain level,” John said. “He really wanted to go, and needed some help to get back in some of the habits that he had abandoned during his teenage years. We worked pretty hard together during that time to get things under better control.”

Now that Josh is in college, part of his transition to adult life is finding a new healthcare team. “I think I underestimated how challenging it would be to find a good team for him to interact with as an adult and how important it is,” John said. “I feel like we’re still trying to find that for him. We had a great relationship with his pediatric endocrinologist and want to get him that same kind of support network he had all through his childhood and adolescence. I think it’s so critical for parents to help kids get a team that they feel like they can call on and check in with regularly.”

No longer involved in Josh’s daily life with diabetes, John finds himself in new territory. “It’s a balancing act,” John said. “It’s been good but it is hard. I really want to open up his meter and check his numbers, but I understand that’s not my place. With college, the schedule is not the same every day, so it’s been an opportunity for us to talk about how he’s staying on top of that, if he needs anything from me, or if I can I do anything to help. We’ve developed our conversations to where he’s comfortable with my checking in with him. We understand where the boundaries are and I understand that it’s still his deal.”

Josh’s health history also helps set John’s mind a little more at ease. “From diagnosis to today he’s had no hospitalizations and no major issues, which to me is really remarkable,” John observed. “He’s done a lot of things, been a lot of places and been very independent. He’s shown me he’s pretty trustworthy about his care. That helps me a lot.”

It seems like parents of children living with diabetes continually practice the art of letting go, and that it’s a growth process for both parties. Joining forces to encourage a sense of responsibility and independence could go a long way to guide the journey. It seems to have worked well for John and Josh. My thanks to John for sharing his story.

All the best,

Laura K.


Disclosure: John Crowley 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.

“Certified Diabetes Educator” and “CDE” are certification marks owned and registered by the National Certification Board for Diabetes Educators (NCBDE). NCBDE is not affiliated in any way with Sanofi US. NCBDE does not sponsor or endorse any diabetes-related products or services.


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Comments

  1. Richard
    March 6th, 2014, 7:18 PM

    I have had discussions with John Crowley, he works at diabeticconnect.com.

    Hello John, this was a great article, and I’m glad you and Laura put this together. You have obviously done a great job with your son. I wish all parents of type 1 diabetics would do as well as you have.