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What age was your child "self sufficient" with their diabetes care?

Discussion in 'Parents of Children with Type 1' started by joy orz, Aug 21, 2014.

  1. joy orz

    joy orz Approved members

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    Hi there.

    I am a long time member, but haven't posted in a while. Ava was 16 months at diagnosis, so we've been at this for almost 7 years, and we are struggling with how much freedom is the right amount. She is now 8 and wants to do things that don't involve a school nurse or me tagging along.

    This week she has been in a play that has rehearsal from 10 to 3. It's community theater so she has been "in charge" of her diabetes. It hasn't been easy. On the first day, she left her Dbag with her Dexcom in the theater while the group went to rehearse in a different area. Hence, no Dexcom readings the entire day. The second day, she lost her Dex completely. We found it under one of the seats. :confused: We were both more than a little upset by this.

    Today I dropped her off high after doing a set change, then she didn't check until I came at lunch time. This wasn't so bad as it was the two hour correction check, but...

    In so many ways she is a rock star. She does her own checks, is really good about keeping track of things on playdates and I feel mostly ok about letting her bike around the neighborhood with a juice box and her meter and dex.

    I feel like she is at the age I was when being a kid was the most fun. It was when I could bike anywhere my legs could carry me, go to the library and the ice cream parlor with friends or by myself... and I want her to be able to have all those same freedoms and experiences, but when she flaked out all week now I feel like we have to take a step back.

    Since she was a baby at diagnosis, I have always tried to parent her as a kid first and let her do as much as possible. But now we have moved to a rural area where kids have much more freedom in a wider radius and do things like mountain bike through the forest or kayak out to islands. It's a really great lifestyle, and I am trying to find the right balance. Also, there isn't really much nursing support here. None of the camps or Y's have a nurse on staff, so if she wants to do a camp or kayaking or something, she is going to have to be able to do set changes and really keep track of things because it's been made clear to me that the resources and staff support aren't there.

    I could turn this post into a novel, but I'll cut it short and just ask when did you feel your kids were independent in D care and what steps did you take to help them get there?
     
  2. kiwikid

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    hmmmm .. it all depends.. Rachel CAN do it. If she wanted a special day with a friend and I agreed IF she did all her D stuff then yes she could go, and further outings would be dependant on how she did then she'd be a cracker.
    Day after day of normal school stuff and busy days when she was concentrating on other things, and fitting in to what other kids where doing with more emphasis on being part of a group and following directions - nah... and she is 12.

    Can Ava wear her Dexcom in a pump pack or spibelt so she can't lose it? And then she can respond to alarms which is better than not doing anything?
     
  3. Nancy in VA

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    Emma is 9 diagnosed at 25 months. She does a lot of stuff herself. She goes to dance class for 2-3 hours one night a week and takes dinner with her, she responds to her Dexcom alarms, and pokes and treats for dinner. Her dance teachers know she has diabetes and she's had to sit at times when she was low and didn't feel good. The only time she's had to call me from the desk was when we forgot to leave her with her softball uniform and she was going from dance to softball!! :)

    She doesn't change her own sites but wants to start learning - slowly. We have sent her with people to events we barely know - we just got a text number and she takes care of things herself - this includes knowing what she can and can't eat because of celiac. The most recent time - she managed to actually BREAK her tubing on an escalator on the way home from a professional baseball game. She had been running high and she was going to be home within an hour or so - they just called to let me know because the wanted to make sure that Emma saying "it'll be fine until I get home" was ok - it had to be because I hadn't sent her with extra tubing!! :)

    So we are as independent as she has shown maturity to do. If she was leaving her Dexcom around like you mentioned, I'd probably reconsider. Ask your daughter to wear it in a pouch or a pocket when you aren't around, so you know she's got it. I don't necessarily need my daughter to check in because I trust her to respond to Dexcom alarms, but when she plays at a friends down the street, we usually plan a check-in at about the 2 hour mark!
     
  4. MomofSweetOne

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    My daughter was diagnosed at 11, so we didn't go through the ages you've managed through. However, I just wanted to warn you that when the puberty hormones begin to rage, the kids get REALLY spacey. A friend of mine describes them as getting lost on the way to the bathroom from their bedrooms. With D in the picture, it can get really complicated as they both want and need their independence at the same time their brains have gone into neutral as far as remembering ANYTHING. It gets better after about a year, at least in my experience.
     
  5. joy orz

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    She won't wear her Dex. She never has as she feels it's too bulky. She has so much gear on her body that we respect her wishes on this. Generally, she is good about taking her kit with her meter, dex and carbs wherever she goes. She is really good about taking it on bikes and in the woods, as well as over to friends' houses. This is the first time though that she has been really "in charge" without a close friend's parent who knows her well or at school. We've been really lucky that every sport she has played, the coaches have had other kids over the years with D, so sports have been abit easier and the kids leave all the gear in the same place with water and such. For sports, they do frequent water breaks when she checks.

    But this has been different. It's THEATER (as typed with a flourish). She just got "carried away with all the excitement". Last year she went to a non D camp and did so amazing. The staff was great too, but there were situations (a low in a kayak in the middle of the lake) that she had to handle. Some days I am just blown away by how mature and awesome she is, and some days I just face palm and say in my most sarcastic pre-teen voice Seriously??

    Anyway, this week has just been a really big step for us and I am realizing that she is only going to want MORE independence. Meanwhile, I just want to scoop her into my ergo wrap and take her back to the playgroup days when Mommy was with her 24/7 :eek:
     
  6. kiwikid

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    I do think age of diagnosis has a lot to do with things. Anna was diagnosed at 17 this year and she does everything. Granted she did have prior knowledge of Type 1 and what is needed, but she really doesn't want me interfering in the way she does things. Rachel still asks everytime about whether she is allowed something to eat, and I think its because it was drummed into her when she was little. Breaking the habit of Mum being there to be in charge of the D stuff is going to be hard..

    We're lucky that we have the Vibe pump which works as a receiver for the Dexcom - Rachel wouldn't want to carry anything else either, but Anna carries both pump and dex and seems happy with it...Could you compromise on her just wearing Dex at certain times?
     
  7. hawkeyegirl

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    If Jack didn't wear his Dex, he would lose it 1,237 times per day.

    He's 10 and just lately have I trusted him to go somewhere for 3-4 hours with no trained adult present. He's not perfect, but he does pretty well. There is a big difference between where he is now and where he was at 8.
     
  8. msschiel

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    My son (10 1/2 at the age of diagnosis and 11 now) was just diagnosed last year. He has pretty much done everything himself since diagnosed. The only thing I do is count his carbs, figure his insulin, and do night time checks. I need to start working with him on how to carb count and figure his corrections. We are still doing MDI. He has gone away over night with friends and family that aren't trained (my parents are the only ones who know what to do except carb count, my dad has been a D since the same age and he is 57). Ds has a friend that has a lot of food allergies and I was a bit afraid to take him at first, but now that we know what he can and can't have, I feel more comfortable. If he is going away, I will always ask what they are planning on food or I will send him a packed lunch and some free snacks. It isn't like he can't eat anything, just has to watch how much. I am always available to call if they have questions.
     
  9. mamattorney

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    My daughter CAN do everything associated with her diabetes care (age 11), and in a circumstance like you describe, she probably would do an acceptable job. Aceeptable, not perfect. For example, if I'm home, she asks me for carb counts every single time or else at least asks for my approval (yelling across the house, "yogurt? 12 carbs right?"). But if I'm not home and she's hungry -- she does it herself and is fine with it. Same for being out with friends, at a sleepover, etc. The worst she'd do is not test and just dose for the carbs whether she's 85 or 175 - as long as the dexcom is not alarming, without my nagging, she'll often just dose for carbs. So that's why I say she would do an acceptable job. It's not perfect, but it's not harmful either.
     
  10. Beach bum

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    This was the deal breaker for us. If she wouldn't wear it, she couldn't do the activity. So when she wanted to do track, I said fine, but if you don't want me following you around the whole time, you're going to have to wear it in the spi-belt. Same with going to a friends house. Either mom or wear the Dex. So now she clips it to her pants or bag or wears the spi-belt (for sports only).

    I have to say, at 13, she is pretty good. She does almost everything asked of her on a daily basis at school and when she's on her own. BUT, like everyone, she isn't perfect. There have been times she's forgotten the kit or the Dex. She did theater club this year and got busy doing her task and completely forgot everything in the building. By the time she realized, school was closed. Luckily, it was in the well marked emergency bag and was in the office in the am. On rushed mornings, if I don't put her kit with her lunch box, she'll forget it. Good thing we live 5 minutes from school because I've had to drive it over a few times. LOL, she can do all the tasks associated with diabetes. It's a matter of her choosing to do them or not! Amazing how she can't count carbs or prick her finger while her nose is buried in a book :)

    We remind her that with freedom comes responsibility. And while her sister doesn't have to remember a kit or CGM, she does. It sucks, but unfortunately this is the way it has to be. She is mature enough to understand and we (including sister and friends) are really good about reminding her if she's forgotten it.
     
  11. denise3099

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    Wearing the dex has gotten a whole lot easier--both pumptastic and tallygear make spibelt-type belts with a clear plastic window you can see through and push buttons through. You never have to take it off and you never lose it. You feel the vibrations and you don't have to dig a beeping dex out of your purse or bag. I get and approve of your repsecting her wishes but she can't make an informed decision if she doesn't TRY it. I would insist she just try it out in a belt for 3 days. If she hates it fine, but she may end up liking it a lot.

    I often force my kids to try stuff they don't want to do with ample rewards for cooperation--d stuff too. I decide as a parent what I think is best and dd has to give it a shot. If I'm wrong then fine but that's a decision she can make after she has some experience.

    I can't speak as to the rest--when I was a kid we'd run off and be home by dark, but my own kids haven't left the house by themselves pretty much ever. My 14 yr old has gone out with friends in the past year but at 12 dd hasn't gone anywhere by herself. I had the key to my apartment when I was 8, but my own kids can't make toast, so to me letting an 8 yr old go off on her bike sounds like 1980.
     
  12. quiltinmom

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    Your question has no one right answer. The "right answer" is what is works for you and your family. But for a little perspective, my Ds, age 12 and who is generally super responsible and on top of things, is mostly independent, but still needs guidance from time to time. I don't think he will be completely independent until he moves out of the house because I will be here to talk things through with, at the very least.

    His first real d independence was in third grade. He had a field trip I just could not go with him on. Well, he came home high because he forgot his lunch bolus. Not awesome, but he also came home with stories of all the fun he had. So overall, I counted it a successful day. Now he is 12 and goes more places without me and I don't worry as much. But I still say things like, "do you have your meter/low snack?" And "don't forget to bolus for lunch." He took too much insulin for dinner yesterday so he needed a little help working that out (combo of bolus suspend and more carbs later on).

    I agree with you on letting them do as much as they can and will. There is a reason why it is called managing diabetes. You have to find a way to work d stuff into what you want to do in life. If that means setting up rules like wearing the dex (as others have mentioned) then you do that. If it means tying a string around her finger to remind her to test, then you do it. Whatever will get the job done without holding her back from living the life she wants. Trial and error is always part of that.

    The truth is, kids today shouldn't have the same freedoms we had as kids. It's a different world. But do I think you were irresponsible for letting her go to play practice last week? No, I don't. She didn't have any incidents, and you would have done more damage not letting her go. Sometimes they don't do a perfect job with d, but that is all part of learning, gaining their independence slowly but surely. And it lets us, as parents, learn to trust them, so that when they leave home we don't fear for their lives. It helps us be able to let go.

    The great thing is that communication is so easy and instant now. Most people have phones with them24/7. What a blessing for all parents of cwd!

    One last thing. Try praising her for all the great things she does, including d care. Often children respond by doing even better. Focus on the slip-ups as little as possible.

    Good luck! I wish I could attend her play. :)
     
  13. jenm999

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    Quiltinmom, this is a beautiful response and I agree wholeheartedly.

    Related, at what age does/did folks here allow their kids to bolus without going to the nurse? We are very new to pumping but my son loves to "drive" and almost always does his own boluses with us looking on. He's 7 and starting second grade.

    Our deal at home is that he has to confirm the carbs with us verbally ("ten grams minus one fiber gram is nine, mom!"), finger stick should be close-ish to the dex without us needing to confirm/redo, and then he has to shout out the recommended dose before pressing deliver.

    I would love for him not to have to go to the nurse for snack and bolus in the classroom. I want him seen midday by the nurse though. I suppose I could do a carb-free snack.
     
  14. hawkeyegirl

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    We started letting Jack bolus for snack in the room with no supervision in 4th grade.
     
  15. Nancy in VA

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    I would think maybe if the teacher would supervise the snack bolus, maybe but I wouldn't otherwise let a 7 year old bolus without supervision.
     
  16. Lee

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    She has had an incredibly exciting week. A new school soon, new friends, new neighborhood, and an entirely new group to play with in the theater group. I would say cut her a bit of slack. At 8, she just won't remember. At 16, she won't remember either when she is in such an new and exciting situation.
     
  17. Ali

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    Hee Hee :eek: even after 40 years one does not always remember to bolus or to hit all the buttons on the pump... You think you have but... You have gotten some great advice.:) Ali
     
  18. StillMamamia

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    My son (10 now, 11 in December) is still not independent with his D care. I feel that we're to blame, because we wanted to let him show signs of "wanting to take over", but it's turned out he is so comfortable and reassured with us being "in control" of something so important. In 2 years he'll be going to HS, and if things don't change we're "scre***".

    In worrying not to give him too much too soon to handle, we've not done him any good. It's the plain truth.

    Good luck!
     
  19. MEVsmom

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    I'm different than most, I feel sure, but my daughter has been bolusing on her own since she learned do to do her own injections right after she was 8. She has been pumping for about 4 1/2 months and she boluses with that too. If we are at home, wego over the carbs and she calls out what the pump is telling her, but I don't go over her shoulder and make sure it's ok. After school and when school is out, she is with grandparents that really don't have all that much of a clue so she used to call us with MDI, but with the pump, she knows exactly what she is doing. It's not like she has to do the math. If she's at a friend's, she takes care of that too. Now granted, she is a very intelligent and VERY mature (almost) 9 year old. A great many of the kids I see around her I would never trust. She also wears a Dexcom, which gives me comfort as well.
     

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