I need to come clean about Caleb’s post. While his statements are accurate, I think they may be misleading regarding how much he is currently doing in his care.
From the beginning, he has enjoyed being involved in the Pod change process, but it’s always been my responsibility. Certain steps require a level of dexterity that a four year-old does not yet possess, so he hadn’t been able to do it entirely by himself. There was a point where he got close; he did a Pod change almost entirely on Rufus. I just needed to help him get the bubbles out of the fill-syringe.
In general, Caleb’s priorities have been elsewhere – like piano, baseball, reading, swimming, etc.
But then he expressed his worry about the future. For that reason alone, he has been changing his Pod, particularly on his back, by himself for the past couple of weeks. He’s improved each time and now he’s got it. Bubbles and all. He’s no longer worried about caring for himself when he grows up.
As he stated in his post, he’s taken the initiative to start a journal, but other than the Pod placement, this journal is mostly non-functioning. I’m still in charge of all the dosing decisions. He does count carbs, but not exclusively by himself. Since the day he started Podding, more than four years ago, he has checked his own sugar and input his carbs and bolused. But again, not exclusively.
Here’s the thing. Caleb has been living with diabetes at the ages of three through eight. He has a lifetime ahead of him of doing all these things and most of that time will be doing them by himself. I want him to be independent. I want him to be autonomous. I want him to be proud of his abilities. But I don’t want him to burnout from the monotony and burden of the “daily grind”. While he’s a child, it’s my responsibility to do what I can to avoid that.
So where is the balance?
I’m not sure.
So far my approach has been to let Caleb lead the way. Over these years I have introduced responsibilities to Caleb and he has either embraced them, or attempted them and lost interest. If he loses interest I don’t push it. I just try again another time.
It’s helpful to know what other kids his age are doing and perhaps more so, what kids a year or two older are doing. It helps me understand what is reasonable to expect. It’s an ever-evolving process. For the most part, it’s been easy to see what Caleb is ready for and each year he takes steps forward.
So back to this Pod changing thing.
Caleb being able to change his Pod 100% by himself is huge. I am elated that he is doing it. Not because it’s one less thing for me to do, but because it is important to him.
But each time he has done it, I have worried about the novelty wearing off. I don’t want this to become a burden. I don’t want him to get tired of the daily grind at the age of 8.
So we talked about it. It was a good conversation. Very light. Very matter of fact. We agreed that we can take turns. I’d like him to keep doing it so he remains comfortable with it, but maybe once a week or twice a month. I don’t want him to feel like it’s his job exclusively. When he ends up always doing it, it will be because he chooses to.
At least that’s the plan for now.
28 Replies to “Gaining Independence While Avoiding Burnout”
Hi, Lorraine, I’m glad to read your follow-up blog and think Caleb is doing so well! I also wrestle with thoughts of when my daughter should start taking more responsibility and how much is too much. I read the book by the 2 type 1 brothers, and their Mom was very active in their care into their teens and even helping them through emergency situations in college. I liked the thought that if you help them when you’re young, you’ll help to prevent the diabetes burn-out when they’re older. On the other hand, I want her to do what she needs to do if there’s an emergency. At 5 years old, she’s not very interested and pretty quiet about how she feels (High/Low). She now reads to me what her pump sensor reads, and I tell her which buttons to push to clear the alarms. Sometimes she puts the strips into the meter and opens the packages for the pump supplies. Other than that, I do pretty much everything else. I often get asked if she knows how to “control” her Diabetes at 5 years old. Honestly, it’s one of my D-Mama pet peeves, and I usually do my best to educate them about all that is required to control D.
Thanks for all you do…You’re an awesome D Mom and I look up to you. I know others do as well. 🙂
I loved your statement…”It’s an ever-evolving process.” I think its awesome that he can change his pod. And I love the idea of taking turns. Once in a while Ally will ask me to check her sugar, and I do it. I had a relative ask when will she be able to do that on her own. ACK! I explained that she does 99% of the time and if she needs a break from it that’s fine by me!
Our approach was very similar to yours. Let Michael lead the way to his independence. We found that just because he had the skill and could do things himself didn’t mean he wanted to do it all himself. To this day he sometimes still requests our help with injections , getting a pump set ready, getting him a snack etc. One of the wisest things we learned our first year at diabetes camp was to not push for complete independence in diabetes management early, because once you are OUT you will not easily get back in. This served us very well through Michael’s teenage years. It was still a group effort. And, he has done an admirable job utilizing his independent skills while living away in college. XOX
You always have words of wisdom, Melinda. I’m always happy to see a comment of yours because I know I’m going to learn something from you and Michael. 🙂
Thanks Lo. When I see Caleb it takes me back to a younger Michael : )
Yesterday Michael played in a La League soccer game ( it is actually an adult Mexican soccer league that he proudly plays on) They play two 45 minutes halves, plus this game went into overtime which meant two more 15 minute periods. He played the entire game. Could I have ever anticipated this when he was first diagnosed? I realized, while watching this game, that I didn’t worry for one second about diabetes….I didn’t even think about it. He took a 4 day trip to southern California last week with 2 of his best friends. I only worried a tiny bit that whole week, mostly about him keeping his insulin cold. I don’t worry about his skill or commitment to managing his diabetes. It is an interesting journey, and we are farther along the path, and happy that any wisdom we can share helps you and your sweet boy.
I’m glad to read it also, Melinda! I’m trying to learn all I can from those who have walked ahead of us on this D-road, especially in the teen years! 🙂
I just love that story of you watching without worry. Why would you? Such a capable young man you have. 🙂
melinda, thanks so much for your comments. my kid is only 11 but i look forward with hope to the days when i can make statements similar to the ones you’ve made here. 🙂
Thanks for continuing to share how your d management is evolving along with Caleb. Very, very encouraging and hugely helpful to hear from parents like you and Melinda – we’re way behind you, but it’s nice to see light up ahead. 🙂
He has his entire life to take care of himself. if I could, I would have LOVED to have another help me as far along as they could. He seems to be doing great! Awesome post! Thank you!
Very interesting post! I was diagnosed a month before my third birthday (1988) and can remember my mom doing what you’re talking about here. Well, not pumping in the 80’s but being hands on, doing things for me and I can now say how much I appreicated that. I did grow up “normal” and my husband now has a “hands on” role, as should anyone living with a person with diabetes. Anyways, great post 🙂
Thanks Lo for this…I was thinking there was something wrong with us. Joe cannot reach his backside to do it…and frankly does not seem interested in inserting a pump site yet. While I realize each child is different, I was concerned that we were quite behind.
Alternating is a great idea!
Reyna, I didn’t even realize how his post read until I saw some of the comments and I realized the impression people were getting. I know what Caleb is saying, but he’s sticking to raw facts without filling in between the lines. I realized I needed to do some filling. The fact that Joe isn’t interested is all you need to know, I think. He does plenty, he knows plenty, he’s totally capable and the time will come and he’ll tell you. That you for a second felt like you were behind (okay excuse that pun since you referenced the backside) saddens me. You guys are anything but! <—oh my goodness, that was another unintentional pun! 🙂
great approach Lo! we have had much confusion in this area…wanting C to be independent and at the same time, wanting her to not have to worry about any of it. we’re learning. everyday. right along with you and Caleb…
I did not grow up with diabetes. I find it interesting to see how you and other parents deal with diabetes. I am amazed at how far Caleb has come. Keep up the good work.
We have a very similar philosophy about always trying to keep the balance in self care and making sure the kiddos stay kiddos and not cross over to worry and anxiety about their T1D. I think you and Caleb are doing a phenomenal job of balancing the responsibilities. Caleb’s video of him changing a pod was a major reason Ellie felt comfortable doing her own demo pod. Seeing another child do it helped to give Ellie courage to take the reigns. When she is tired or distracted, I simply tale over. I will do this as long as she will allow because some day it will all be up to her.
Caleb (and I) are always so happy to hear that his videos help others in any way. It’s amazing to be able to support each other in this way even when we are so far apart. I’m glad to hear that we have similar approaches to so many others. It’s reassuring. 🙂
Lorraine I so appreciate your honesty and your voice on this path. You are such a marvelous mother to Caleb and letting him lead the way. I think balance is important and you are so right, Caleb will have a lifetime of this, and the more we can help now and carry it for them for a while, the better. I’ve always said that physical health is as important as emotional and mental health. Our kids need to be kids. Caleb is doing what he needs to do to care for myself, from your wonderful lead and guidance. The fact that he is doing his site changes and changing the site on his bottom is wonderful. I love his fortitude, his independence and his honesty. You are a great mom Lo to always remember to care for him and take into account where he is at with all of it. I admire that in you my friend.
My 2 cents: Take each day as it comes, keep the diabetes dialogue open & continue to be the fantastical mother that you are!
I knew 😉 only cause I know you as a mama and coming to know Caleb thru his letters I know if he’s doing it cause he’s ready or wanted to. You’re awesome never forget that.
thanks so much for this post, it’s something important to keep in mind. we very much follow L’s lead to show us when she’s ready to assume new responsibilities. i have read with interest on other blogs (meri’s i think) about giving the kids a week’s vacation from the ‘daily grind’ as you said, and L was quite intrigued by that idea.
Thank you so much for this post. I’ll be honest, after reading Caleb’s post the other day, I was feeling very…envious. And….guilty. Am I failing to prepare Matthew? Here’s an 8-year-old totally managing his diabetes….and Matthew? Well, he’s so not there.
But this gave me some perspective and I appreciate it. You are doing an amazing job of teaching Caleb. I agree with all your points. Thank you for inspiring me….again! : )
Tracy – I have to thank YOU. I think it was your comment that made it clear to me that Caleb’s writing was giving the wrong impression. In his mind, he’s doing these big things, and he is. But his statements left too much room for interpretation.
I think we’re all just taking this one day at a time. I’m glad we have each other to learn from and support each step of the way. 🙂
For some reason, this broke my heart. And I think it’s because at one time I was that 8 year old taking on diabetes responsibilities too. I think taking turns is the perfect solution at this point. And taking it as it comes is probably best too. You are keeping an open mind and Caleb will only benefit from that. You do so much for him, he’s going to be a wonderful adult one day 🙂
I look at it this way… Justin has the rest of his life to handle this stuff. Maybe I am doing it wrong, but I am not going to put the load on him until I have to. I do teach when I have the opportunity. I know that when I am not here… he can do it. I do need to work on the site changes with him though… its tough because he has NO interest.
Lorraine, I am once again honored to be following in your footsteps in this journey. I am blessed to be traveling this road with you and able to learn from both you and Caleb. I think your are doing such an amazing job with Caleb and I hope that I am able to do the same for Nate.
Thank you for being so honest and real.
Thanks for posting this…Nate was changing his pods at age 9 on his own..now at almost 12 we are doing it again. We don’t push it, he knows how..but I think he is burned out. I want him to be a kid, I KNOW he can do everything, but at times I feel he has lost a big part of his childhood, so we try to give him some breaks. He does all his own carb counting for snacks etc, tests corrects/treats himself 85% of the time without prompting from us, but other times he just wants to be a kid and not stop to do those things. So I try not to get frustrated with him. I’m so terrified he is rebelling or going ‘backwards’ in his care at times. But reading this makes me realize he is burning out and needs a break. Point blank it sucks to think my almost 12 year is burning out and he has a lifetime of this. We repeatedly tell him ‘we will do what you want and need us to, to make this easier for you and give you a break, we just want to make sure you CAN do it alone if you have to right now’ I hope that all the positive reinforcement helps him.
It is nice to see this from parents. I genuinely get goose bumps when I read this as I see myself in the eyes of my parents, particularly my father’s and perhaps get a sense of how they are feeling.
As you might have gathered, I am the diabetic son of two crazily caring parents. They are both more active in diabetes than I am and generally pass on everything they find out to me whether it is via email while I am travelling or even a phone call while I’m in class! My father in particular has this overwhelming interest in diabetes I believe he could could watch my dexcom screen for hours and explain/fret over everything without realizing that everyone had fallen asleep! It is due to THIS sort of character (and Your’s too) that raises the awareness of diabetes as a problem but more importantly, that it is a manageable one!
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