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Frustrated with my family's lack of understanding and support...(Rant)

Discussion in 'Parents of Children with Type 1' started by lauraqofu, Jun 6, 2010.

  1. lauraqofu

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    Since Cass was diagnosed, I've been doing all of her care myself. Aside from going to school, which didn't last long, she has been with me nonstop every day. She hasn't even been going on her usual visitations to her dad's house or spending an afternoon with a cousin without me around. I'm trying to be tough and handle all of this as well as she does, but I have health issues of my own (most notably Fibromyalgia and something that is looking like, but hasn't qute convinced my rheumatologist that it is, Lupus) and I'm quickly coming to the end of my rope.

    Last night, I took Cass with three of my cousins and my sister and their kids to a carnival. Cass's dad even showed up to spend some time with her. I took five minutes to use the restroom and when I got back to where the family was waiting...no Cass. They had given her a few extra tickets and told her to "go have fun."

    So, my recently diagnosed T1 10 year old daughter was running around on a warm summer evening, with no supervision, and no one even bothered to give her their cell phone or make sure she had her meter or at least some glucose tabs, which were in my bag that I left with the family. They did not ask her what ride she was going on, or give her a time limit. They just sent her off by herself. I was pissed, but didn't take the time to explain it before I went and found her...after 20 minutes of worried searching, and gave her my cell phone so she could call one of the adults in our group if she needed to, and then let her go on her way.

    When I got back to our group, I went off. I said that it's ridiculous that I can't even count on them for five minutes to keep an eye on her. They told me I was overreacting and to "chill" and let her have some time to herself. I didn't have a problem with her being able to do her own thing, but I did have a problem with them sending her off with no way to contact an adult for help, and no time period for coming home. Her own father just stood there looking at me like I'd grown a second head because he couldn't figure out "what I was so upset about."

    I really don't think it was unreasonable of me to expect them to help me keep her safe. Yes, she's 10, and yes, I want her to live her life the way she would if she didn't have T1, but at the same time, I do think that the need to keep her safe is important.


    What do you think, did I overreact? What would you do? How can I get them to see that sending a T1 child off with no way to communicate or even treat a low should it happen? Cass's father and my sister were both in the hospital when the educator was explaining things to us and each have come to an endo appt, and they still don't get it...
     
  2. bgallini

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    I don't know where you live but where I live and even at the tiny carnival thing that they use to have in the outer banks, I would not send a 10 yo girl off by herself. Forget about D....think perverts.:mad: Was she with other kids? If she was with a group of kids, esp if some were older and if this wasn't a huge place like the state fair, then maybe it was a reasonable thing.

    That said, you will run yourself into the ground if you don't get some relief. You need to find someone you trust to leave her with for some time periods so you can have a break. Who would you have left her with before D? Can you start with them and just leave her at a non-mealtime? If you are worried about lows, let her run a little high and only be gone for a couple of hours.

    I hope you can get a break soon.
     
  3. sassypantz

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    Hmmmm... a little yes, a little no.

    First of all, I know very well where you're coming from, because I have recently (i.e: 3 weeks ago) been diagnosed with Fibro, too (along with Sjogren's Syndrome), and I've been VERY frustrated with the process... it seems as though the doc is saying that the only reason they don't think I have Lupus is because I haven't had the "butterfly rash". So they've put me on a couple of drugs and I get to be a guinnea pig to see if it works. So for the past 3 weeks, in addition to the mind-numbing exhaustion and terrible joint/muscle pain, I'm now blessed with all the added side effects of the meds--namely, Welbutrin. Horrible taste in my mouth, tense as %%$$, racing thoughts, no appetite (I've lost 9 lbs. in 3 weeks!), grinding my teeth, and I STILL haven't slept more than 4 hours in weeks even though I feel like I could fall asleep standing up at any moment because as tired as my body is, my mind will NOT STOP.

    And, like you, I have been shouldered with the brunt of my DD's care. She's 12, so she's able to handle more of it than your DD, I'm sure, but I'm the only one who's checking tests, getting up in the middle of the night to test, counting carbs, drawing her insulin, and giving the shots (all while also trying to cook dinner, and guess what? Nobody thinks they should have to help clean up, either!). Luckily for me, DD's dad has insisted on keeping his regular schedule--however, his way of handling her care is inconsistent at best, downright emotionally abusive at worst (he's always complaining to her about her diet), so even when she's with him, I worry. For a while there, he saw nothing wrong with leaving her home alone while he went out to lunch with her brother so they could have some "Boy Bonding Time" (he "took turns" with each child in this way, it makes no $%$%$ sense to me)--all while he had no phone in the house for them to call if there was an emergency!

    My point, and I do have one, thank you for being patient with my lengthy diatribe, is that I TOTALLY understand where you are emotionally right now. And yes, I COMPLETELY understand how you felt in that moment and you had every right to demand reasonable boundaries/parameters for your DD to have the freedom to wander without adult supervision, and YES, they were CARELESS and irresponsible. I wouldn't want my 9.5 yr Non-D child to wander around carnival without strict rules about where/how long/who with, etc. You are not out of line to expect that.

    HOWEVER, if you step back with a little objectivity, you'll probably realize that you overreacted a little. I'm not talking about whether you were right or wrong--I'm talking about the emotional reaction you had to it. In dynamics like this, where Happy Fun Dad gets to sit on his @$$ and rake in the glory while being completely irresponsible, while Mean Mom has to run around behind him and clean up the mess, you fall right into the trap by making it a huge Do-Or-Die Scene. Don't play the game. As long as he can't seem to get it together enough to be able to get back to his regular visitation schedule, you get to set the rules. Don't be afraid to make them very clear and hold him to them, but whatever you do, do NOT let yourself get heated up about it--the angrier you get, the more justified he'll feel in his bad behavior--you know, "The poor kid DESERVES some freedom, because her MOM is OBVIOUSLY a CONTROL FREAK!" But if you can deal with it less emotionally, it'll cool down the power struggle between the two of you.

    I know it's hard, I know you really, really REALLY need a break. Do you have ANYONE you can trust to help take over some care once in a while or to have her spend the night or weekend over the summer? I know you don't have much energy left, but your next goal should be to recruit as many trustworthy people as possible to gain enough knowledge that they can take over once in a while. Make it your mission. Even if you never actually ASK someone to help, knowing that there's someone you can count on will provide a WORLD'S worth of peace of mind.
     
  4. Willy

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    I think you need to hold a Diabetes 101 class....cover all the basics and in it make sure that they realize that a low can equal coma and death if left untreated or is not recognized. An emergency kit should be close by AT ALL TIMES including candy, meter and strips.
    You did NOT overreact....you need help, understanding, and support and they need to realize what D means...both to the child AND to the responsible parent and family. Ask for their support...if they can't give it then you need to decide what the next step is. Make no doubt about it....YOU are in control.
     
  5. Becky Stevens mom

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    I think your daughters Father needs to man up and started taking responsibility for his child. If he doesnt understand how to care for her diabetes then he needs to learn. He should be having regular visitation with her so that you can get a break. With fibro and possible lupus Im afraid youre going to burn out hon:cwds:

    Because of the recent diagnosis and the incredible stress youre under right now I dont think you over reacted at all. I would have been pi$$ed if I'd left Steven who is 9 with relatives to go to the bathroom and come back to find that they allowed him to walk around by himself. Not only is it the diabetes issue which is a huge one but there are some crazies out there :( See if any of your daughters friends Mothers would be willing to learn a little about d care so that she could go for playdates sometime and you can get a much needed nap
     
  6. madde

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    I, personally, don't think you overreacted at all. I think you was within reason to be upset over this. I can't imagine sending my 10 yr. old daughter off without adult supervision with or without diabetes. But seriously, I think, they should've known better. Or at least, waited until you came back and asked your permission.

    I agree that her father needs to step it up and take some more responsible so that you can have a break. You need time to relax and unwind.

    Always remember to take care of yourself too!:cwds:
     
  7. heamwdevine

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    You do need to try to get small breaks at first. It is hard to leave them and trust someone else.

    Can you train a babysitter or get Dad more involved??

    You will burn out very quickly and lose it more often if you don't. It is so hard at first but now after a year and a half people around me are starting to understand and actually be able to care for Anna. It takes time and some people aren't willing to learn. Try to stick with some people who are willing to learn and try to teach them so you can get a break, even if it's just short ones at first.
     
  8. Christopher

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    What kind of direction did you give them? Are they educated to the in's and out's of dealing with diabetes? If not, then it is unrealistic to think that they should know what to do, re: diabetes. But I am with the PP, regardless of the diabetes, letting a child go off on their own at a carnival is not good judgment.
     
  9. Sarah Maddie's Mom

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    What Chris said. ;)
     
  10. lisalotsamom

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    No, you absolutely did not overreact. In the first place, letting a 10yo go off on her own at a carnival without supervision isn't something I'd do...that alone would make me very angry.

    The diabetes aspect of it is alarming as well, and they need to learn more and realize that this is potentially life-threatening....not tell you to "chill". That comment would have made me go ballistic.

    I'd hold a class and make sure they all know that a type 1 should never,ever be without a meter and a glucose source in case of lows. Someone should be close enough to her physically (or by phone if she were older) for her to call for help if needed. What if she'd gone low, gotten dizzy and just sat down...then collapsed?

    If your ex has visitation, then he needs to attend some classes, read up on diabetes care and management too.

    I'm sorry,this must be terribly upsetting :(
     
  11. RosemaryCinNJ

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    Heck no I dont think you overacted at all...shes 10...and yes she should have fun of course she is a child first...BUT she needs to be watched and someone should be with her..children go low so quickly during high activity and excitement...(as we know)
    Shes still a very young child...if she goes low she may not be able to communicate her need to someone...know what I mean? Your family probably meant no harm but they do need to be educated about the real possibilities of type 1 in children...and why they need supervision...shes only 10...You were right Mom!! With or without type 1 ..she should have adult supervison.. My type 1 child is younger and I will admit I am very selective about who gets to take care of her...if you dont know how..you dont get her...:)
     
    Last edited: Jun 7, 2010
  12. lauraqofu

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    Thanks, everyone. I'm so overwhelmed at the moment, that it's hard to tell which way is up. I'm exhausted and ended up having a very bad night last night. I just need a break, but don't know who to turn to for help. I've explained so much, how Cass's T1 is nothing like my aunt's T2. How she can go low suddenly and needs to have glucose or juice and that she needs to be supervised. But, they just aren't getting it.

    And, her father...I just don't even know what to do about her father. He's always been sort of "unavailable" as a parent, more of a glorified babysitter than actually a full time parent, and now that he's going through a divorce, it's even more all about him than it was before. He keeps saying he isn't ready to take care of her on his own, that he isn't sure he can feed her and make sure her insulin doses are correct. I've been very dependent on those two weekends a month to rest and take care of myself, and now I have the added tasks of taking care of Cass's T1, and I don't get the much needed break so I can rest.

    I'm going to call her father tonight, after he gets off work and tell him that I really need him to take her overnight this weekend, even if he has to call me 8,000 times, at least I can just stay in bed with the phone...
     
  13. Mom264

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    I don't think you overreacted. I would have been really mad. When people tell me to "chill" about anything D related, they usually get a glimpse of my wrath.

    Sound like your ex needs to get up to speed quickly and I cut him some slack because the diagnosis is so new. I suggest you:

    1. get her dad a list of classes availabale in your area, and ask him to sign up for one or two;

    2. ask him to book a consultation appointment with your daughter's endo or CDE and ask anything about the disease in general and your daughter in particular that he wants;

    3. buy him a copy of think "Like a Pancreas" as a gift and ask him to read it; and

    4. consider gettting your dd her own phone for times she's away from you.

    All the best to you!
     
  14. Melancholywings

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    Is there a local support group or family retreat around you? Maybe seeing the reality of it though the eyes of other parents might also help your family understand that this is now a part of something bigger with your daughter.

    Also T1D or not I'd have been mad to. 10 is still very young.
     
  15. Brensdad

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    We'll be your family.
     
  16. foxa71

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    I feel the same. I do all the work for Erin. One day I had to go to the dentist and my husband had to go to school to give our daughter insulin for her lunch. He complained all night because he was worried about the amount he gave her, how he hates guessing. It was a lot of stress for him, but hell, I go through that constantly!

    I don't think you over reacted at all! Your daughter has a life threatening conditioning. She's lucky to have such a caring mother!!!!
     

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