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Where is that line?

Discussion in 'Parents of Children with Type 1' started by Lindy, Jun 24, 2010.

  1. NomadIvy

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    Some people just don't care.

    I thought it was God-send that one of the moms form ~K's school knew what T1D was because her husband was diagnosed at 24. However, they were only "obsessed" about it for a year and then decided they had to "live life". They still pretty much eat healthy at home, but I know he drinks and really doesn't count carbs, test much, etc. So I wonder what his A1Cs are.

    A friend's former girlfriend's parents didn't care much about her diabetes (type 1), but when she reached teen years and adulthood, she kept a tight control on her BGs. She was always on the lookout for the best endo so, whether good or bad, she kept changing endos.

    I'm just praying that ~K will care enough for herself as a teenager and later on as an adult... to manage her ~D well.
     
  2. Lisa P.

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    Right to the heart of it, Frizzy.

    I think the problem is that there are situations, bad situations, that can't be fixed. What a child needs is a loving family that takes care of her. Sometimes, often, we cannot make that happen.

    So then the question is, what can we do? Make it less awful?

    No disrespect to PPs, I definitely get it, but I find it interesting how much of the above is about reporting. Who do we report it to, who reports it, should the endo tell CPS? Social workers tell the endo? Forum members tell a social worker? I think it's a sign of the breakdown of community in the country that we all have this vague and desperate hope that someone out there has the key, that if we can just get the person with the masters in social work to a mom's door the mom will go, "OH! I get it now, how silly I was, of course I'll fix the problem." But we all know that's not the case. If a mom is just set on wrong expectations, or confused, or can't do the math -- but cares about her daughter more than herself -- she'll find a way to take care of her baby (and I hope that will happen). If someone has mental issues or selfishness that stops her from caring for her kids, a nice sit down won't change a darned thing -- might even make things worse if someone is attention seeking.

    And we all know that the chances of finding a foster family that has the time, knowledge, and resources to do a good job of care is pretty slim.

    The frustration is that people who aren't taking care of their children should have family, friends, and community members that call them on it. With love, but without excuses. Social pressure should be focused on taking care of kids. But we have a social and community atmosphere now that has moved away from that ethic, so that we have many times when the needs of the children or the family are pushed aside to celebrate the fulfillment of and entertainment of the adult individual. We have no general national ethic that says "don't ever hurt your kids", it's changed to "try not to hurt your kids too much", so abusers get the wrong message (that everybody does it) and their neighbors have a hard time seeing where the line is for interfering.

    So, Frizzy, what am I going to do about it?

    I'm going to revisit those times places in my life where I'm looking the other way and try to do something, some thing, to at least make the situations less bad. Have a little guts. And I'm going to try to go at least a day, maybe an hour, without doing those things I do wrong with my own family. As for the poster on the other thread, I don't think there's anything else I can do. I don't think I'd call CPS -- I'd sit on the mom and dial the phone in a heartbeat if I thought it would help, but I don't think it would. I can't think of a thing I can do that would not make the situation worse. But there are situations in my life where I can improve things and haven't, so I'm going to work on that. It's all I can do.
     
  3. Seans Mom

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    As for this one "real" situation.... I don't know what anyone here could do about it. Call and say what?? I read on the internet blah, blah, blah and I "believe" a child is in danger??
    Hmmm? Address? Name??? details???

    I have no evidence that anything I've read is true or any details that could help if it is true.
     
  4. frizzyrazzy

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    I don't know either and that's partly where my frustration and anger lies with any hypothetical situation. This page gives a lot of good info though: http://www.dhr.state.al.us/page.asp?pageid=348

    Name and addy are easy things in most cases to find when we're dealing with the internet. But I think the onus here lies probably with the nurses or doctors who would see these cases first hand and who are supposedly mandatory reporters.

    But stepping back from the whole issue of CPS, I wish the website here had some system in place where families like this could receive help. J&J is a big company. Why not have specialized help (especially in these times where families just don't have the $$ to spend on their own) or offer scholarship money so that a family could get addition help.
     
  5. Rukio

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    I think it is awful that people decide to just "live life" Because when they do, don't they realize, they don't have much of a "life" to live without proper care? I hate reading these stories, I hate realizing that there are in fact parents out there who simply don't give a care about their kids diabetes management. But the truth is, I need to just accept it, help when I can, and then move on. I just don't understand how anyone could give their kid insulin a lot later after eating cotton candy and such Its like they are asking for lows. I think, instead of complaining on the computer like quite a few of us might, we should use our time to try to recommend books and hound them till they finally realize, they are playing with their/kids health. Now, I know I may not have much room to speak but I know the kid simply can't feel very good when they have little control. Parents should take care of the kids, let them fly under their wings, but instead of pulling back from care quickly, slowly slide back and let the kid soar.



    offtopic: Again, working on a hard crochet pattern so that may or may not make sense. I can explain in better detail later if anyone needs me to.
     
  6. Lisa P.

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    Good post.
     
  7. Lisa P.

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    I wouldn't argue with a single thing you're saying.

    It's just that I believe if a parent needs help that parent can normally find it. That's what this whole site is about, isn't it? Yes, it's hard to dig up sometimes, and it wouldn't hurt to have tons more info and resources.

    But I think the situations that are hard are when:

    1. The parent doesn't know he is screwing up -- he sincerely believes, or convinces himself through denial, that there is not problem. You can't fix a problem you don't know or won't acknowledge exists. How do we change that?

    2. The parent is mentally ill -- her perspective of reality is skewed and so she is irrational in evaluating the problem or irrational in her approach to fixing it. How do we help her?

    3. The parent has chosen to do wrong -- neglecting or abusing a child because he is selfish or because she somehow gets some satisfaction from hurting the child or allowing the child to be hurt, e.g. a sense of power or sympathy from friends when the child suffers. Besides a lynch mob, how do we help the child there?

    It's nice to think that education will change the world for a kid in trouble, and undoubtedly it can help many. But in the case of a parent who chooses not to make use of resources available, what options are there?
     
  8. MHoskins2179

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    Interesting post

    Interesting discussion about that line, and when it's drawn and by whom.

    When I was diagnosed at 5, my parents served as my pancreas for the most part up until I was 10-12. My mother, being a Type 1 herself since the age of 5, had a basic mantra from her own Life With Diabetes that I should learn it on my own and be able to make my own decisions and mistakes, as long as I knew what was at stake and happening. So, while they took on my D-Management, they guided and taught me. I had good control, for the 80s and early 90s.

    When I hit my pre and teens, though, things changed - as they do for every kid that age. The beginning years were OK, but by the mid-teens my A1cs were Scary High. They lectured, grounded, did what parents can do. But it was my choice. I was the one who didn't do what was needed, and as a result had A1cs consistently in the Teens and at one point hit 19.

    What happened to change me, in my late teens? My pediatric endo looking me in the eyes and telling me I'd be dead by 21 if I didn't improve. The D-Team did all they could.

    Though I wasn't yet 18, was this my parents' fault? No, not at all. It was my own choice. I'd worry about a state where they might get punished by CPS for my choices. Of course, that's the world we live in. Just as you can't leave your kid in a running car while you grab a gallon of milk, and you often can't scold your child out in public without getting concerned looks, you can't not manage your child's health "adequately" (as defined by the state) and let them decide for themselves. Times are different.

    Call CPS if an AIc is consistently higher than 8, for some state-determined period of time? Really??? Really??? Yikes.

    For the record, I improved dramatically in college and the A1Cs now hover in the 7s, after going to low 6 or so once pumping began. I know that I'm lucky.... Lucky that I got to where I am despite my past mistakes of inadequate D-Management. But I appreciate everything my parents did in letting me learn from those mistakes, but doing everything they could to prevent them.
     
  9. MamaC

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    I think there's a vast difference between parental management/child participation in the late teens/early twenties and (theoretical) parental mismanagement of a much younger child.

    Doesn't unblur the line...but there's a difference.
     
  10. Kaylee's Mom

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    Do you think these parents are simply not educated or to lazy to care properly for their D kids? Their is an adult male who lives in our community and he does not count carbs and rarely tests. It is scary ... one day when he was sick his mom was telling me how he stopped taking his lantus since he could not hold anything down. My hubby said it was none of my business but I thought about it and finally sent a facebook (private) message to his daughter. She is married to my cousin and I used to babysit for this family when I was a teen. Anyway, I just told her that was very dangerous and to never stop taking lantus ... she said she appreciated the message .. I just could not live with myself if something happened and I did not even try. But ... not sure what you can do ... would DHS force parents to take a D class? It is sad and frustrating ...

    Crystal
     
  11. virgo39

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    There are many times in life when we are faced with choices, choices between doing nothing and doing something. In my experience, most of the time, doing something is the way to go.

    The issue here is what is the "something" that should be done?

    There is a huge range of possible responses to situations such as these. What I try to do is think about what I am comfortable and capable of doing and what I think is likely to have an impact or be effective. Those don't always overlap, though, and that's difficult.
     
  12. frizzyrazzy

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    in other words: you can lead a horse to water......
     
  13. frizzyrazzy

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    Your a1c was 19 and your parents didn't step in?? :rolleyes:
     
  14. buggle

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    I think the parents on this forum are not the norm. I told our endo that our management of Brendan was mediocre compared to the other parents on this CWD forum. She looked at me like I was nuts. We're the top 5% or better at our clinic that treats thousands of patients. Most kids don't get A1c's under 8 outside of our community.

    I think that's incredibly sad and I blame part of it on the weirdness of our society about hurting someone's feelings or having incredibly low expectations of what people are capable of. It's not just T1, they do it with everything. If someone comes in with heart disease, the doc doesn't tell them to stop eating a crappy American diet and get off the couch. No, they tell them to cut back as much as they can on junk food and high fat food and give them an Rx for a statin. They assume that everyone is incapable of making major changes and/or working hard for good health.

    I think in many situations, the endo is a major part of the problem. Many have low expectations to begin with and in their arrogance, think patients can't possibly be smart enough to manage this disease. After all, many endos sure can't. And so many endos are totally clueless. There are wonderful endos out there -- I think ours is incredible. There are a ton of average endos and there are some stupid, incompetent or apathetic endos. And so many people are taught to revere their doctors, so they don't question what the doctor says and if they say an A1c of 10 or 11 is fine, then it's ok with the parent.

    I find this whole thing incredibly frustrating. It makes me angry and it makes me sad and depressed. I just hope that anyone lurking who has a young child with high numbers realizes that it doesn't have to be this way. All of us have periods where our kids have crappy numbers, but if we seek help and learn how to adjust dosing, we can get back on top of it. The worst thing to do is give up. But like another poster stated, so many people feed their kids total junk food day and night until their children are obese and unhealthy and they develop type 2. It's really no different than having a cavalier attitude about type 1. The result is the same and cuts a child's life expectancy.
     
  15. MikailasMom

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    I think for me the problem is what the heck can we do? You cant very well report someone when you dont know who they are, where they live..I dont know anything for a FACT. Who knows this lady could be making this stuff up! Who really knows. If this crisis is real I feel sick to my stomach. I thought responding to the post would be a place to start, but apparently it wasnt enough. As a mandatory reporter, I feel obligated but I dont know enough facts to report. One can report suspisions but based on what? ..online I read... Im sure thats not going to hold water. and to who? What if its not factual, then what? It tears at my heart but what the heck CAN I do? If these facts are real, and the MD is aware thier office should have/ could have already reported it if it were actually a childs life in danger. I have such torn feeling over this whole situation.
     
  16. Becky Stevens mom

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    Well now there in lies the problem with the internet. A very wise woman (my therapist) told me once that people are not who they seem to be on the internet. They can pretend and behave any way they want. I was really bamboozled on this very site awhile back by a young girl pretending to be a Mother of a child with possible diabetes. I befriended her, stuck up for her, gave her all kinds of advice, others in here sent her supplies just to find out she was lying and not who she said she was.

    Just remember this, for every person that comes into CWD or any online diabetes forum and states that their kids A1Cs are always over 8 there are probably 20 others that wouldnt bother to say anything because they really dont give a rats a$$. Thats the hard truth but its real and Ive heard about it from my CDE who councils people about caring for their CWDs just to have them come in each appt, download the meter and find out the kids only been tested a few times in the last week. Im not talking people living in poverty either. The fact that this woman felt she could say something in here tells me that she does care about her kid so Im not sure why having her child taken away from her and given to some foster family that doesnt know anymore about diabetes then she does would help this child. I suppose if it helped people to sleep better at night because now their conciences were eased so be it. But I wont start reporting people to the authorities when I know nothing about them personally. Nothing about the family dynamics, nothing about what they are living with, nothing about their finances. I'd much rather try to help them with giving advice and hoping that they will take it and stop trusting a doctor whos shown that hes incompetent to care for anyone especially children. I wouldnt bring my diabetic cat to some quack that allowed children to walk out of his office with an A1C of higher then 8 on a consistent basis.
     
  17. Mimi

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    I think this is a very important point. Who we are here on this board or anywhere on the internet is very much who we choose to be. What I or anyone else posts about their child's numbers, A1C, highs, lows etc....is only what we choose to put out there. We are seeing but a snapshot of their life and most likely a photosphopped one at best.
     

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