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Independence backfired...

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

  1. Sarah Maddie's Mom

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    I think I can see all your posts now.

    I'm not sure what to say. Obviously, your family, your rules, but the degree to which you are surrendering D management task to your child is highly unusual.

    We are all tired. We are all worn down by the hyper-vigilance that D requires. Sadly, it's just the nature of the beast. If you think that your admittedly anxious child is better able than you to carry this burden, then that's your choice as a parent.

    Wishing you good luck.
     
    Last edited: Mar 2, 2014
  2. mamattorney

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    Just to jump off of this - I think it's perfectly fine for an 8 year old to do all of his own physical injections and physical BG checks. Just like the fact that you are not physically changing his underwear or brushing his teeth. He does the physical labor, you do the background work. You make sure he has clean underwear in the right size to put on, you make sure that he hasn't run out of toothpaste and you remind him and make sure he gets it done. For diabetes, you make sure he never runs out of supplies, you measure out the insulin, you make sure he checks his BG and you make sure he gives the insulin based upon your recommendations.

    My daughter was doing her own injections within a week of getting out of the hospital (she's a little older, but still hasn't been at this a year) and doing her own BG checks before she left the hospital, so I understand your situation of having a child who insists on doing these things.

    However, what to do with the numbers and how much insulin to dial up, well, even the brightest 8 year old can't think though all the variables of diabetes. I would have told my daughter to "SLOW DOWN" if she would have been calculating, dialing and about to dose before I had thought it through. I dialed everything up for her at home when she was on pens and syringes, but she dialed it up at school for lunch with nurse verification, so I don't think she was incapable of dialing things up. It just seemed like it was time saving - she checked BG, I did the math and stood by with the pen and dialed up right after she was done. She's on a pump now, but I would say at LEAST 1/3 of the time I override what the pump tells her to do - activity, daily patterns, fat and protein, restaurant food vs homemade. An 8 year old may on a basic level understand the ratio and correction formula, but diabetes is unfortunately not at all formulaic. For my daughter, I try to talk everything through out loud so she may be able to pick these things up via repetition over time. It's probably even more important for you to carefully think things through on MDI because you can't do anything with the long acting insulin for the day.

    So, to assuage him, maybe explain that - yes it stinks to have diabetes, but you will be there to carry the mental burden and as much of the physical burden as he wants you to that month, that week, that day or that dose. Whatever he needs, you'll be there for him. And often, you'll be there when he thinks he doesn't need you. No kids want to be checked up on - they consider themselves so grown up and the micromanaging of things like brushing teeth to be harassment, but you've got to do it anyway.

    The good thing? You caught the situation after 16 hours. Not even 1 full day. Last year, my very responsible daughter did her daily math homework at the dining room table in front of me as I cooked dinner. She would close her workbook and declare herself done. I believed her. I found out -- over a month later -- that she was quitting early. Doing say 3 of 6 problems. Homework doesn't count for a grade, so there were no repercussions except my disappointment in her lying to me and my disappointment in myself that I had completely slacked on ensuring she had completed things. I check now, I'll tell you!

    So, just fall back, regroup and start some new routines.
     
  3. Phoenix Rising

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    Thank you for all your responses. I realized my errors after the first few responses but couldn't say anything because of the lag in moderation approval. It has been very frustrating to read the mounting responses that all essentially tell me that I made a terrible choice in allowing him the freedom I gave and not be able to respond.

    I'm absolutely aware of the dangers of insulin. I've worked in the medical field for 17 years and worked with DKA patients in the ICU and two of my best friends are pharmacists and we've talked extensively about his dosages. I don't know ANYONE else with diabetes or a child with diabetes except for a co-worker who is type 1 and has a daughter who is also type 1. I hardly see him, but he was able to encourage me yesterday when I ran into him. It's just different when it's your child. Because of this, I literally knew nothing about what is 'normal' for parents and kids with diabetes. No one on our diabetes management team, the endo, or the educator clinic has said anything when I've explained that he gives his own insulin and helps calculate doses and has taken on a lot of the responsibility. They all seemed like it was a great thing that he was doing it himself.

    I know we all know our children better than anyone else. I know my son's ability to handle responsibility. I failed to take into account his age and anxieties as time has gone on.

    When he was diagnosed, my pharmacist friend said, "Jen! This is huge, so incredibly huge. You are the perfect person for the job. You are amazing and you can do this. I have faith in you. BUT, remember he is a little boy. Right now you are both strong. At some point, he'll meet the reality and he'll crash. And it'll hurt you both. Be ready for it and tackle it when it comes." I wasn't ready for it.

    When he was diagnosed, his private art teacher confided in me that her 21 yr old son was also type 1 diabetic, diagnosed around the same age. She told me, "Please, let this be HIS diabetes. I know it's hard to not turn him into a number and a dose. I know that it's easy to take over every aspect of this disease at his age. I failed my son. I didn't give him the freedom to be his own person within his diabetes. He struggled against me, I tightened down controls even more. He ran away and almost died. Guide him, lead him, but do not control him." I took that very much to heart and when he took on more responsibility, I let him. I think that in the back of my mind, I am always thinking of his diabetes, but I do think that my parents aren't as aware. And I might have given the caregiver a more lax impression than I should have, based on my way of handling it.

    I'm learning and changing my habits. At this point, I am calculating, and dialing in all his doses and watching him give them, reminding him to check his glucose, and also having me bring him the meter after he checks his sugar so I can confirm it, if I'm not in the room. I'm going to have a very frank talk with my parents about their lack of oversight and their cynicism with how I handled his highs yesterday while I was at work. I put together a very specific plan to lower his blood sugar to acceptable ranges and when I was explaining it to them, they were questioning it. But then they didn't watch him test for ketones (I found this out later, after I got home from work), they had just mentioned it needed to be done so he went and did it. And they didn't double check his dosage on a correction, so he gave a half unit less than he should have. I'm pretty angry about that right now. They are also not comprehending the mood swings are related to diabetes and that his raging is NOT him, but his brain malfunctioning. I can't survive without their help with childcare. If I pay for childcare on the weekends, I will only be making $5/hr. I need to get through school so I can be independent with my childcare.

    Thank you for your responses. I hope you don't think I'm ungrateful or upset but I felt discouraged in a lot of ways. I'm very tired and doing the best I can with a hard situation. I'm fortunate that I'm not having to deal with his father in this situation as well. Thankfully he does not have visitation. It would be worse than my parents. But in the end, hard is hard. And that's where I'm at.
     
  4. virgo39

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    I was responding and reacting to your original post, where you followed your statement about breaking trust with the one about caregivers double checking "every time"--which, to be honest, came across to me as shaming him. It is difficult to relate and to appreciate the nuances in posts.

    In any case, moving forward in a new way that takes a lot of the responsibility off of your son seems like a good idea.

    If you think he can do more than the mechanics, there is no reason you cannot let him calculate something in parallel with you. We do this frequently with our 9-year old as a way to practice her math and D skills.
     
  5. MomofSweetOne

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    To add to this, it will be many, many years before you'll be off duty. Even if he prefers to do his BGs and injections NOW doesn't mean he will in the future. My daughter wanted to - and did - start giving her own injections in the hospital. For the first 10 months, she carried almost all of the physical burden of diabetes. Then she came home from camp exhausted and wanted me to do it all. When her post-camp exhaustion wore off, we shared the duties. Now, she's moving more and more into being involved in the management aspect of diabetes, but I am carrying more of the physical burden than I ever have. The other night I asked her to check her BG. She was watching t.v., and her meter was right next to her. She asked me to do it, and I was surprised because it meant I had to get up and come to her. She looked at me and said, "I'm burned out. I have the rest of my life to do this. Can you test me?"

    I'm glad I was warned at diagnosis that this could happen, that I needed to be prepared to step in at any point and carry it for her, even when she's 18. I'm just thankful that she's expressing her burn-out appropriately, still desires good control, and is willing to work with me to maintain that.

    I was also told that we need to check her meter nightly through the high school years and that as she moves to college, it will be important to talk to her every day or two for a while to carry the burden while she goes through the college adjustment without the entire weight of D alone.

    Good luck with your son. It takes lots of communication and staying on top of what they want or need at any moment. Diabetes is not easy.
     
  6. Charliesmom

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    I'm big on letting my son do as much as he wants to. He has just decided he wants to do his own shots. However, I still buddy check everything because he is only 8. The child can't remember to hang his coat up instead of throwing it on the floor. There is no way I would feel comfortable putting that much responsibility on him. Heck, I have mixed up the lantus and novalog a few times.
    I hope you are clear with his childcare providers and grandparents that they need to double check that he is testing. That scares me.
     
  7. sugarmonkey

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    My son was dxd three weeks before his 8th birthday. I'm also a solo mum, who was going to school at the time, and had recently started a new job. My DD also has multiple health issues, so our house is stress city.

    DS wanted to do his injections and tests right from the start. That was all he did. I would work out the doses and ask him to test when he needed to. At school he was on his own (no nurses here, and uncooperative teachers). When he went on the pump we would both do the carb counting and work things out together. Eventually he was doing the carb counts himself, but this was mainly because I have number dyslexia, so my math is really bad, and he's really good at math. I still checked his doses before he delivered them, reminded him to test and to dose etc. And I decided if he needed corrections, and if we did what the pump suggested or not.

    He's now 17 (tomorrow) and I still check his doses sometimes. Not every time, but at least every few days. I check his meter regularly to make sure he is testing and acting on the results appropriately. If he wants me to take over and do the boluses or tests he knows he can tell me and I will. We've recently had issues with his self care, so I feel I need to keep on top of it and not just rely on him doing it all correctly, even if he is so close to adulthood. He's got plenty of time ahead of him to be 100% independent with this horrible disease.
     
  8. missmakaliasmomma

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    I do think he's awfully young to take on the responsibility all by himself, whether he thinks he can or not. My husband and I often talk about when we think my daughter will be able to take over a lot of her care. We're hoping 10 years old. I have an 8 yr old nephew and I could never imagine him having to deal with that responsibility at that age. At 8, I'd be explaining things and letting him help and talking about what bgs, carb counts, etc mean, not doing all of it.
     
  9. sincity2003

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    Is he not in school during the day? I'm just confused how he could have gone an entire day without checking, is all, if he's in a school setting. Or is he in a school setting without a school nurse? My DS was diagnosed last January at 8. We came home on N and R, with regular syringes, and for the first 5 months, DH or I did the shots, but mainly it was me because DH works some long and crazy hours. We've always double/triple checked his numbers/doses. Have there been times we forgot the Lantus and/or Levemir? Yeah, twice.

    He went to camp last summer and came home wanting to be independent. We were still on N and R, but then, other than drawing the insulin up, he was doing his own shots. Once we moved to MDI, he would check his sugar, let us know the number, DH or I would put the numbers into Diabetes 360 (an app on our phones) and give him the dose. He would dial it up and bring it to one of us to show us that it was the correct amount. We also did this with his Lantus and then Levemir when we switched. So, he still had the independence to give the shots, but mom or dad was always checking the numbers. Now that he's on a pump, he will call out his number, we will give him the carbs and then he will tell us what it says to do. Sometimes we change what it says to do, and sometimes we won't, but he always checks first. At school, they know that Tuesday, Thursday and Friday he has baseball and they call before his lunch dose to see if we want to make changes in anticipation of that.

    I think that based on what you've written here, you are overwhelmed. You're a single mom with three kids trying to work and go to school, and that's a great thing, but if you, as an adult, are overwhelmed, can you imagine how your son feels? I don't have diabetes, but my mom was a single mom of 2 kids, working full time and going to school full time, and I still remember how I took on so much of my own care because I didn't want to burden her with one more thing. Have you thought of the possibility that in his mind, if he took care of all of his D care, he wouldn't be adding more to your plate? You need to assure him, with actions not words, that he is NOT adding more to your plate than you can handle. He is a kid. This will be his life forever. If this means that you take time off school, then you take time off school. Like I mentioned above, I'm not a single mom, but I do 95% of my son's D care because of my husband's work schedule. I also work full time. There are days I am so tired and so frustrated, I just want to run away, but I never, ever let my DS see that. He has enough to worry about, without worrying about how it's making me feel.

    I hope you don't think I'm being harsh, because that isn't my intent. Good luck to you!
     
  10. Toterra

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    I am going to just go ahead and disagree with most of the posts here. Perhaps I am just inexperienced (my son was only dx'ed a month ago), but I think everyone is giving the mom (and the kid) far too hard a time. It sounds like the family is doing a great job and wrapping their minds around this disease and how to treat it. So the kid got behind on his treatment and had some bad numbers. He didn't end up DKing, and he learned a pretty valuable lesson. The reality is that this disease is a lot for an 8 year old to handle, or a 10 year old, or a 15 year old, or a 20 year old or a 50 year old and burnout/mistakes happen to everyone.

    Only the mom in question knows her son and what he is capable of. Yes, there was a break in trust where the kid pushed back against the treatment, but that is entirely normal (or as normal as things get with diabetes). I am sure after a month or so of increased vigilance, trust will be restored and the child will go back to managing most things on his own, with both the child and the mom more aware of how to actually trust in each other to manage the disease. This is a learning experience for everyone involved.
     
  11. Phoenix Rising

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    I appreciate the replies since my last post. I'm approved now so I think my posts will go through in a timely manner.

    I homeschool my kids so I'm with them 24/7 if I'm not working or in school. I work two days a week and my parents watch them. I go to school two days a week and they're in private Childcare. The reason I went back to school is because financially we barely make it and there is not much option for promotion in my current type of career. I need a stable job that can offer me full-time employment in 12 hr shifts. I also need to get some space between my parents and my little family. I can't do that in my current career because they provide free childcare.

    Yes, we have learned a lot over the last week. His numbers are all over the place and he's having frequent migraine-type headaches bc of it. In the last 24 hrs, he has ranged from 90s to mid 300s. :-( his appetite is also all over the place but I know I've been dosing super tight and accurate on that. Things like a slice of French bread shot him up WAY higher than it normally does. Everything is all wonky. He does not have ketones, fortunately. We have his having his first A1C draw tomorrow so we'll get those results in the next week or so. He has been waking up in the 300s so I raised his overnight Lantus dose to hopefully correct that. His little brother had the stomach flu on Saturday so I'm praying that doesn't crash into us. I got stuff set up for low dose glucagon and syringes if it happens. Tomorrow my goal is to be at 200 or lower all day. I'll be with him the whole day so I can keep him really monitored better than anyone else can. I'll also be checking him through the night to see how that higher Lantus dose treats him.

    Along with his A1C, he's getting a ton of extra stuff drawn to start the process toward getting a mental health referral. Before the incident last week, we had a really good run of numbers and I was able to take some notes on his behaviors. He has a pediatrician appointment on Friday and then hopefully we can get the process started toward counseling and see what the next step is.

    I had midterm exams in three of my four classes today, and an essay due along with some short write ups. It's been a very long day so I'm off to bed.
     
  12. Phoenix Rising

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    Forgot to add that yesterday I was calling to set his ped appointment up and when I started talking to the lady at the call center three states away, I was listing some of the stressors and said that he had been diagnosed with diabetes a few months ago. She stopped me and said, "Oh honey. I have a diabetic son. I know right where you're at. This is one of the hardest times you'll ever have in your life as a parent. I was a single mom too." I started crying.

    Today, in biology class, after an exam, I was randomly talking to a classmate I hadn't talked to before and she said she had to do some special medications when her son was sick because he had diabetes. I was so stunned. Her son is a T1D 8 yr old and is in competitive gymnastics (mine is also in gymnastics, though not competitive) as she is a single mom as well.

    Makes me wonder what tomorrow will bring.
     
  13. mmgirls

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    Have you considered public/private school? You may be missing out on a great school system that can help you get all the resources you need? or maybe you do homeschool because you school system is not stellar, IDK.

    Good luck.
     
  14. Phoenix Rising

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    We have perfectly wonderful schools here. I believe I can provide a better education based on our circumstances. We have oversight by a public school charter that provides $1600 a year per kid that can be used toward enrichment education. It allows my kids to be in theater, private art, gymnastics, and piano lessons. So I cover normal school stuff two mornings a week, my parents do a small amount (mostly science) and the childcare gives my oldest worksheets. It's been perfect for us. A lot of stuff is combined, like my 8 yr old reading a children's book to my 5 yr old, then they fill out a worksheet I've given, so they both get comprehension, the oldest gets handwriting and reading. He also thrives on teaching his brothers and this is a good environment for that. It also allows me to not have to worry about his diabetes within the school situation as much (although this past week kinda shot that outta the water for us).

    The great news is that I think a large part of my battle was solved by upping the Lantus dose. I did checks every two hours and he stayed at 150s all night. Woo-hoo!!!
     
  15. Nobby1

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    So happy upping the lantus has worked for you, here's hoping that you will have a lot of small victories coming your way.
     
  16. nebby3

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    As a homeschooler I will say that most of us do not choose it as a rejection of our local school system but for a myriad of reasons. As a parent of a cwd, nothing I have read here had ever made me think my dd would get better care going to school. We do not homeschool because of D but it sure helps that I am in charge of all her care, even at the times when she is not with me. The OP is new to D and has some things to work out (though again I don't think she should beat herself up but just move forward) but I think most homeschoolers of kids with D find that it really helps with their control.
     
  17. mmgirls

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    Nothing against homeschooling! I was just wondering where the OP was on it because it sounds like many things have changed for their family since they started with homeschooling.

    My daughter gets great Diabetes care at her school.
     
  18. Sarah Maddie's Mom

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    I think that's a little distorted. People post about problems they are having with D so obviously there's a bias toward negative school experiences on a forum like this. Most kids get good and even great support from their schools - they just don't post about it.

    I suspect the topic of "regular" school came up because the OP's life sounds incredibly busy and hectic - she said that she covers all school "stuff" in two mornings because she herself is working and going to school. I'm not surprised that someone would suggest that the stability of a supportive school might be good for mom and the kids. A not unreasonable suggestion, imho.
     
  19. rgcainmd

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    Like mmgirls, my daughter gets EXCELLENT care of her diabetes at her public school (much better than she gets from her stay-at-home father, I'm sad to say:(). She also receives a decent education and feels "like all the other kids."
     
  20. Christopher

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    I agree with Sarah, the majority of the times people talk about managing diabetes at school here it is going to be because they have a problem, so you can get a false impression that it is all bad. Personally, for the last 6+ years and 4 different schools, Danielle has gotten really good care at school and they have been VERY accommodating of her needs.
     

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