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Independence backfired...

Discussion in 'Parents of Children with Type 1' started by Phoenix Rising, Mar 1, 2014.

  1. Phoenix Rising

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    I'm new here...Our story isn't that much different from anyone else's so the nutshell is that my now 8 yr old son (was 7 when diagnosed) was hospitalized at the end of October 2013 after a trip to urgent care. I had called the pediatrician's nurse to talk to her about a referral because I thought he was depressed (lethargic, confused, eating all the time, tired...etc) about some family issues. Started listing everything and then the EMT in me stopped and gasped, "Oh my gosh, he's diabetic!" and she agreed it sounded plausible and to get to urgent care. BG was 495. Went to ICU with DKA.

    The day after diagnosis, when he was still in ICU, he asked me if it would always be this way, having to count carbs and give shots. I told him it would always be this way. But that we would figure it out and he would be okay. He asked to see the granola bar I was planning on eating. It was twenty carbs. He asked how many carbs he was supposed to have for a snack. I said it was fifteen and asked him if he knew how much that was. He broke the bar into half and then into quarters and gave me a quarter and said I could have the quarter he couldn't have, and started eating my granola bar, looking at me. He then asked me to show him how to check his own blood sugar with the meter. He has been checking his own blood sugars since he was released from the hospital after his diagnosis.

    I work weekends and my parents watch the kids (I'm a single mom). The first weekend, he let my parents give the shots, but after that, he said he wanted to learn how to give them himself so he didn't have to have them do it. I was wary, but let him practice on my belly with some extra syringes and the next day, he was giving his own insulin. A few weeks later, he got the Humalog and Lantus pens. At around that point, we (my parents and I) started letting him prep the pen, dial in the dose and show it to us before injecting. Within the first month of his diagnosis, he was essentially covering all care of his diabetes care except for figuring out the carb counts on homemade food. We ALWAYS gave him a carb count and made sure he calculated it to the right dose. We kept meticulous logs for about two months and always double checked everything as far as dosing. He always checked his levels when asked and remembered to do what needed to be done. After about two months, we got the hang of things, and while we were still very precise on dosing for food, I didn't always write it down when I was at home with him during the week (I home-school him and his younger brothers). My parents always write everything down and it's available for me if I am questioning a dosage or not sure why something doesn't seem right. Cameron has always been very trustworthy so there have been times that I give him a number for a dose, he will add in the correction if needed, and verbally tell me what it all adds up to, then prep, dial and inject the pen. He has always been very methodical about everything being in a certain order so letting him do this was a logical next step for us since he hadn't ever given us problems about it.

    Cameron is high anxiety. He has had a lot happen in the last six months. Before his diagnosis, we traveled back east where he visited his dad and I was out of the country for two weeks. Then he was very sick when we got back for three weeks and then he was diagnosed. Holidays started up three weeks after discharge from the hospital and then I started school in January and he went into childcare two days a week. I'm seeking help through his pediatrician for his mental health but in the meantime....

    A week ago, I asked Cameron if he'd taken his Lantus that morning because I hadn't seen him do it. He said he had. I re-questioned him and he insisted. I let it go for a few minutes and then went back and said I was fairly certain he hadn't done it and he replied that maybe he had forgotten and just in case, he'd go do it again. I finally got out of him that he hadn't given it, and that he had forgotten and was afraid I'd be mad. We had a long talk about it and I told him that he had broke our trust and I, my parents, and the childcare provider would need to double-check EVERY time he used the pen for insulin from now on. He seemed to understand and didn't give grief about it.

    His levels were off on Wednesday, he was high. Then I was in school all day on Thursday and wasn't there for any of his meals. His childcare took the blood sugar he reported and dosed him accordingly for his meal with a correction. My parents had him for supper and did the same. He was still high today. So I was sifting through his meter to try to figure out a pattern. He didn't check it all day yesterday. I had checked it at 4am Thursday morning and he didn't check it again until 8:30pm that night. Sixteen hours. He fell into a sobbing mess when I showed him the meter and said that part of it was just that he had forgotten and the other part was that he was so tired of the finger pricks and needles and didn't want to do anything anymore. He had a terrible headache from being high and said he didn't want to feel this way ever again, but he was just having a hard time being a diabetic right now.

    So now, we are back to triple-checking everything, from glucose checks to pen dosages before and after he does it. Did I totally screw this up? I'm on my own here. I've been waking up nightly and checking his levels, I work part-time and am in school full-time, and am the sole provider for all my three kids, ages 4, 5, and 8. His independence was so beautiful and I never shoved it on him. He insisted on it and was doing such a great job until now.
     
  2. Beach bum

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    He is 8. Think back when you were 8. You thought you could do things because you were big. But in reality, it got old quick. This is a lot of responsibility to require of an 8 year old. It is hard, especially being a single parent with multiple kids, but you will have to come up with a care plan that is manageable for both you and your son.
     
  3. nebby3

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    I agree it is clearly just too much for him at this age. Don't beat him or yourself up over it but come up with a new plan.
     
  4. Phoenix Rising

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    That's the thing. I never required it. I have frequently asked him if I could help him. Conversation goes like this after a meal:
    "Mom, what's my carb count?"
    "Um, let's see...dose for 85, I think. Let me check on units..."
    "It's 6.5, Mom. My correction is 1.5 so I'm giving 8 units, right?"
    "You're sure on the correction?"
    "Yes."
    "Can I help you?"
    "I got it."
    And he puts the needle on the pen, primes it, dials it, saying it out loud, then used one hand to pinch his skin, counts, "one, two, one, two, three!" Injects. Waits ten seconds, counting out loud, pulls the pen, caps it, removed needle and puts it all away.

    As of last week, I am dialing all doses on his pen and handing them over. The other adults are doing the same. He was very resistant to the idea until I said it was completely non-negotiable. Now we are moving to the issues with checks and I'm trying to figure out the best way to make that work without stripping his autonomy. I would have to restrain him to give the shots or prick his finger myself. I think that in his decisive ownership of his diabetes, there has to be a good way to keep the accountability within the responsibility.

    I'm tired. This is hard. The actual medical parts are easy. It's the constant having to be 'on' all the time.
     
  5. Nancy in VA

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    Even my daughter, who had been diagnosed 6 years by that point, is rarely able to handle that level of responsibility. With the anxiety problems you say he has, definitely take this off his plate.

    If he wants to do the "mechanics", that fine (i.e. let him poke, even let him inject if he wants), but all of the "DECISIONS" and reminders should come from you - take the MANAGEMENT off his plate, and his brain and let him be 8. Emma does most of her diabetes management herself because she's been at this so long, but she still gets prompts to poke from me, etc.
     
  6. sszyszkiewicz

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    I am also new, and my son wants to be independent and show us how well he can do things, and I am very proud. He is very brave.

    Thanks for taking the time to write that story!

    At first he wanted to do all his own shots but I now do his Lantus at night because we use his arms for the Lantus and it is hard to reach.

    Regardless though, before any insulin is administered, this is how it goes.

    "Luke come check"
    <he checks>
    <he announces the number>
    "Luke thank you for checking" (we actually say this now based on advice I received on this forum....it is just a number)
    <My wife tells him the carbs>
    <Luke calculates the dose and announces the units>
    <Luke dials the units>
    <I double check the math and write it all down>
    <Luke does the shot, but I ask him if he wants me to>
    <a patt on the head or a slap on the butt and he enjoys his meal>

    The routine is the important part. No drama associated with routines. Make your own routine. At their age a tiny mistake can have big consequences, so making sure they are using the right pen and the dose is right etc is really important. One extra unit for Luke will drop him 75 points.

    From my perspective it is not all his to manage. He is 11. When he turns 18, goes to college/leaves my home, then it will primarily be his....it wont *all* be his until he pays for his own care.

    D is an imposition. It is depressing. It adds crap to your life. There is no negotiating with it.

    At this point think of it as an opportunity to love your child that much more. Work with whoever is watching him to do the same routine when you cannot be there.

    Thanks again for sharing all that, You have a handful of responsibility there.
     
  7. ksartain

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    My son is also 8. Even thought he is a very responsible kid, he is not near ready for managing his diabetes by himself and we've been at this for over a year. I haven't been a single mom, so I can only imagine how hard it is to have to do this all yourself. But your son's life is in your hands. Maybe a pump can help. It's much easier to deliver insulin and manage his diabetes. But he will still need tons of oversight. Christopher still has to be reminded to check his sugar before he eats.
     
  8. Sarah Maddie's Mom

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    Yes, you did screw it up. And I say that because you need to tell your kid that - he needs to know that this breakdown is mom's fault, not his.

    He's 8 and he's only barely into this life-long disease. True, it's exhausting managing this disease, but just because you are overburdened by your adult life doesn't mean that he or any 8 year old, is ready to carry the burden of managing type 1 on their own.

    Perhaps your endo or CDE can suggest age-appropriate D management task for your son.
     
    Last edited: Mar 1, 2014
  9. miss_behave

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    I 100% agree. 8 is way way way too young to manage this all on his own. I didn't do all of my own D management for a long time even though I was diagnosed at 13. Let him be a kid. He has to deal with this for the rest of his life, at least carry the burden for him for as long as possible in his childhood.
     
  10. Guru_rb

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    Even my daughter was diagnosed at the end of Oct 2013 at the age of 7 yrs 3 months. Her BG was 562 and she had to get into the ICU with DKA at midnight. She was on MDI for just 3 weeks and when we saw that 2 units of Lantus was too less and 3 units too much, we switched to pump. It's been 3 months now on pump, and the only things that we have let her do are - testing BG, stopping & disconnecting the pump for bath and connecting & starting the pump back, that's all. I definitely don't think I will burden my daughter with anything more than this for now, and at least another couple of years.

    Even during her school time she has 2 food breaks. We have managed to add the insulin to cover those 2 meals to the basal program itself (as the timing is fixed). Has been working fine so far :)
     
  11. Phoenix Rising

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    I'm sorry. I'm still on moderation. I replied to this after nebby3's post. But there appears to have been a rather large delay. I absolutely believe it's important that he's a kid. I wanted to take care of him. He would have nothing of it after the first few weeks. It was 100% his choice and even now, he has insisted that he give his own shots and finger pricks.

    When I was asking about screwing up, I meant, should I have not let him be so independent of his own will? I understand the reminders for checking were a mistake in the part of the adults in his life. And I admitted to him that we all failed in that area. But HIS chosen independence is part of this and I'm trying to balance that.
     
  12. mamattorney

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  13. mmgirls

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    There is a difference between letting your child be in charge of what happening to their body, checking their blood sugar and giving shots, compared to giving them the responsibility of independent diabetes management.

    You guys are so new to this and he is young, your family is already juggling.

    You have a lot on your plate, single parenting, home schooling, going to school your self, other younger children and many other things. I am sure it is easy to turn over diabetes tasks to him when he seemed so capable and wanting the control, but it does not mean it should happen, especially so new to DX and at such a young age.

    I am fairly certain that you and his other caregivers can come up with a plan that lets him have age appropriate diabetes tasks that he can do independently and delegate the rest to an appropriate adult.
     
  14. virgo39

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    I don't mean to pile on here, but I think that the level of responsibility that you let your son take on was far too much--even if, as seems to be the case, he is mature for his age and generally reliable.

    This part of your post concerned me. Given my view that this was way too much, too soon for a 7-8 year old, I don't agree with how you handled this.

    It sounds like his fear that you would be mad that he forgot was reasonable. It sounds like you are mad at him for not being as responsible as you had hoped--in taking this burden off of you (I am not a single mom, and work only part-time, but when DH travels, I find caring for one child challenging, so I think I understand that you have an enormous amount on your plate and having a child with D compounds it exponentially).

    To say that by forgetting (and covering it up, which I realize is a more serious parenting issue), he "broke your trust", is just too much in my view. In fact, I think that he had a right to trust that you would be there for him, supporting him more concretely, rather than letting him keep taking on additional responsibility until he bowed under the weight of it.

    Finally, it sounds like you are telling him that adults would double-check the insulin every time -- as a punishment -- when in my view, that is the bare minimum that a supervising adult ought to be doing on a regular basis.

    If it were me, I would tell my DD that we were going to reboot/start over. I would apologize to her, validate her feelings that D sucks and is unfair, and talk to her about how we were going to do things moving forward, setting out a few simple tasks that she is responsible for (which would primarily be letting an adult know if she needed help or didn't feel well and following the adult's instructions for caring for her) -- in other words, I would not expect my DD to be making any decisions about her care, calculating insulin etc. though over time, you could certainly move in that direction.
     
    Last edited: Mar 1, 2014
  15. Phoenix Rising

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    I'm frustrated because I'm trying desperately to respond to these posts but nothing is being put through moderation. So I'm writing this after virgo39 posted.

    I grew up in a world clouded with shame. It also pervaded my marriage (now ended) and my son's early years by his dad. Unfortunately, because of my current situation, my son is exposed to it when he's in care at my parents two days a week. It's why I'm going to school, to be able to not have to leave them there for the free childcare. Shame is an element that I have been battling for years and through counseling, have finally broken through. It's something I'm hyper-aware of when I talk to him. I'm very firm and matter of fact. I act completely in grace, gentleness and concern for him. And in the same way, when I told him we would be checking his doses, I told him that it's something we should have been doing the whole time, but had just kind of faded away from doing, and that it's our fault too, that we hadn't been helping him. So I was re-instituting it.

    When I found out about the missed testing on Thursday and talked to him about it last night, he was upset because he felt like poop from being high. On his own, he correlated the feeling yucky with being high. We had a similar talk to the one above and I finished with saying that we would be reminding him to check when it was needed so he wouldn't have to remember on his own. He's been okay with that so far today.

    I'm going to wait on posting anything else until all my posts have gone through moderation. I'm sorry if this all gets rather confusing. I hadn't expected the delay/lag in my posts. I would have posted a bit differently last night, had I known.
     
  16. Mish

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    Put it in perspective: does your 8 year old remember to brush his teeth or change his underwear without reminders? Would he happily wear the same clothes 4 days in a row unless you insisted they go into the wash? Would you trust him to prepare all his own meals and would you just assume that they'd be healthy ones? Do you oversee his homework? Do you drop him off at a shopping mall and say "have a good day" and then allow him to go shopping all day, buy his own things and handle watching out for himself?

    I suspect your laughing at the foolishness of allowing an 8 year old to be fully responsible for any of those things. But, what your son took on, and what you allowed him to take on, was a greater thing than ANY of those. So like the others have said, this one is squarely on you mom. You've got to back it up, take over a his care, let him help with age appropriate tasks, but you (or his caregivers) make the decisions, you verify everything, you do the testing at night, you do the shots. It's not a punishment, you need to tell him that is not the case (take those words back..pronto). He's a little boy with a long road ahead of him. He tried taking on something that seemed new and exciting but was FAR over his head. In short, you let him jump into the deep end of the pool, saw him treading water for 5 minutes, and thought he was now an Olympic swimmer.
     
  17. kirsteng

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    I agree with the others, however I want to let you know that I understand that you're just learning too. You were brand new to this disease also.. I well remember the shell-shocked early days, and not really having a handle at all on what exactly was going to be involved with all of this. For us, the clinic really started us off easy - very little management. So I had no clue for a good 4-6 weeks what I was in for - and I bet you were the same. In the beginning you think it's not so bad, it's doable. Then you realize that you should be setting your alarm and getting up at night, checking 10x a day instead of 4, counting carbs etc. So... I get it, it's a mistake many people might make. But a mistake it is - and the best course of action is to admit it, start all over, and take all of it off his shoulders for a long time.
     
  18. wilf

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    Let him know it was a mistake, your mistake, to have him doing as much as he was. Then work on a new start at this. If he want's to measure and give boluses that's fine, but you need to be doing the math and supervising - long term. Good luck! :)
     
  19. Lee

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    I know it may feel harsh that everyone here is saying that 8 is too young, but that is only because it is. Let me ask this, would you put a loaded gun in his hands? What about dangerous drugs that might look like candy? Or maybe let him drive a car? I think it is vitally important to remember that insulin CAN KILL. Too much insulin, one small miscalculation, which is easy to make - especially at that age, can have dangerous consequences. I know this seems dramatic, but you would not let your son engage in other life threatening dangerous behavior, please reconsider letting him calculate and give his own insulin without supervision.
     
  20. dpr

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    Now you know what he's not capable of. Take control of it and set a good example for him to follow. We all make and have made tons of mistakes learning how to manage our kids diabetes. Diabetes is a huge learning experience with a steep curve, now you know, don't beat your self up over it. With my daughter, also 8, I expect myself to have the major part of her D management until she is 15-16 years old and even then I'll be still be checking, a lot.
     

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