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Listen to the kids.

Discussion in 'Parents of Children with Type 1' started by sammysmom, Nov 11, 2007.

  1. sammysmom

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    This is one of the biggest things I have learned about dealing with diabetes for 5 years....yes, my son is 6 and he has had diabetes for 5 years. It hurts to even type that. Anyway, like I said, actually listening to my son is one of biggest things in dealing with diabetes.

    I just posted on the thread about asking for nutrition information. Do you know what we used to do? We used to say, "I need the nutrition information, specifically the carb count" and then we would get the funny look and eventually say "my son has diabetes I need the carb count". I never thought about that phrase or what it might be doing to my son. He confided in me this week that he does not like it when daddy and I offer up that information to strangers. You know what? He has every right to be offened by this. We never asked his permission to offer up his personal information. We never thought twice about talking about him, right in front of him. It hurts his feelings and we will never do that again. We may have to do diabetes care in public but that does not mean we have need to offer up information, without his permission to everyone that has a question.

    We have used all the CGM devices for clincal studies. We LOVED the information and would love for him to wear one....all...the...time. Guess what? He told us that he really does not like the cgm because it makes him feel like "diabetes boy" this was his exact phrase. HMMMMM. We are doing a trial on tuesday with the DEX to see if he still minds wearing the extra set. This time, he is only going to wear it for a few days. If it still makes him feel self conscience about himself, we will take it off. It has nothing to do with a second device, it has to do with his comfort level of a second set on his body. It has to do with the alarms and the alarms remind him that he has a condition. We are going to respect his feelings on this issue. This was a big lesson to learn.

    Listen to the kids. I think that we forget sometimes that underneath diabetes they still are kids and that they have important things to say too.

    shannon
     
    TheFormerLantusFiend likes this.
  2. Ivan's Mum

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    you're quite right, i sometimes tell people when I'm after the carb info, but other times I say I'm counting carbs. Either way they think I'm mad.

    I can understand where you're coming from as Ivan is 6 and whilst proud of his pump, doesn't want anyone to see his site. He is just moving in to that phase where he doesn't seem to want to be different.

    Thanks for helping me think a little further.
     
  3. Mama Belle

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    My daughter hates it when I reveal to strangers that she has D ... hates it. So I stopped doing it.
     
  4. OSUMom

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    We see this type of thing more with the older kids - how very insightful for you to be sensitive to this with your young son. :cwds:
     
  5. Noel

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    Oh Shannon, I am so sorry that you are going through this! I have a situation similar to yours, Aidan is 7 and has had Diabetes for 6 years. But the problem is not with him....it was with my DH when we were 1st together he never wanted anyone to know about his D. When he was in College he almost died b/c he was low and no one knew what to do. This was the days b/f the pump and of course he had no medical ID on. Thankfully EMS got to him and SOMEHOW figured it out. When Aidan was diagnosed he "came clean" about Diabetes and did a 360. He didn't hide it anymore. Aidan has always been very out spoken about having Diabetes, I don't know why if it is b/c his Dad is too, or what.

    I agree with you we have to listen to the kids. And most importantly we have to remember they are kids first and kids with Diabetes second.

    <<<<<<Hugs to you>>>>>>>>
     
  6. Tori's Mom

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    This is such a good reminder. We do the same thing at eating places and have never thought a thing about it. Thanks for the heads up!
     
  7. Boo

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    I'm fairly certain that my son feels that way too, though he has thus far been kind enough to put up with it and hasn't said anything to me. Thanks for the reminder. I'm going to try to be better about it!
     
  8. thebestnest5

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    One of my painful fears when Liv was dx'd was if I would ever look at her again and not wonder what her BG was at that moment or where it was going.
     
  9. Treysmom

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    Oh yes this is so hard.

    So far Trey does'nt mind people knowing he has D. I'm sure there will come a day. He is totally against anyone seeing his site(as it is on his bum.)
     
  10. wilf

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    We try very hard to listen to our DD when it comes to managing the D. We probably listen more than at other times. This is one of the reasons that we are not even considering a pump at this time, and why our insulin regimen has become so unconventional. We are always working at fitting the D into her lifestyle, as opposed to vice versa..
     
  11. MelissaC

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    WOW! How timely.... Avery and I just had a discussion about this - A mom in our brownie troop offered up something to us that her daughter had lots of fears and questions about D and she thought it would be a great idea if we addressed Averys condition with the whole trrop. I aksed Avery what she thought and you know what? She was MAD!!! No way she said - it is none of their business (and this is coming from a 6 year old!)
    Opened my eyes! It is hard to remember the feelings theyhave - This is another reason tat we are not pumping... Avery truly does not like to be singled out or made to feel different - as far as I am concerned as long as we can keep her numbers under control the way we are the choices are up to her - She needs to feel like she has some sort of control... Good Post!
     
  12. lisahackman

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    We had just made some iron-ons for some tee shirts I needed for school. Alexa asked if we could make one up for her. This is what she put on it -
    "Just because I have Type 1 Diabetes - Doesn't mean I'm different."

    I got a lot of insight into her head at that moment.
     
  13. khannen

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    I laughed at this comment as Shealyn (almost 4 yrs old) will proudly show off her site to anyone who asks about her Diabetes. Lol.. not necessarily a good thing since it's on her butt. I've spent 6 mths trying to teach her that most people do not care to see that. :rolleyes:

    I'm glad for this thread as I never thought of making the same comments.... when at a restaurant, I've always said I need the carb count to calculate insulin for my daughter. Don't know why I've felt like I have to give a reason.
     
  14. liasmommy2000

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    Same here. I asked Lia if it was ok if I did a presentation to her class this year (first school year pumping). Not only was she all for it, but she told me all what she wanted them to know, including a site change.

    However at times she doesn't like to check her blood if there is a large group of kids around. Her closest friends, or those she's known for a while, fine, but a large group asking questions (snack at girl scouts with some girls she doesn't know well), she gets annoyed when the all want to watch her check her blood and does it under the table. Whatever works for her.
     
  15. thebestnest5

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    I know why I have felt the need. If I ask for carb information and I know the restaurant has it; but they aren't inclined to get it for me. I know that look:eek:! I have been know to say that I am not "dieting"; I am in need of the information to accurately dose insulin and the amount of insulin given is based on the number of carbs in the food.

    I, on the other hand, have asked Liv if she minds and she says that she doesn't mind. She shows off her groovy patches, her pump, and will explain to people what Type 1 is.

    I remember one time we were at Applebee's and my girls were just learning to text message on their phones, when an old lady made an obviously sarcastic remark :rolleyes:about their cell phones and young ages. I didn't say a word about diabetes and neither did DH...we just let our girls feel liked :cool:spoiled divas...<insert long drawn out triumphant laugh>

    Sometimes people can be so judgement without knowing what on earth they are talking about. Like when people assume I am dieting, because I ask for carbs.
     
  16. allisa

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    What a great post.....and a wonderful reminder that our children are people, not patients.

    I was at a family gathering the other day and my brother inquired about a pump in Ty's future.....so I said that he doesn't want one yet.....and since his nmumbers are fine and doctor & I are satisfied with how he is doing, the decision in his....not mine to make......

    And he said....but your the mom....it's your choice to do what is best...and kids can't really have a say in that decision. I said "No, the mahority of his choices have been taken from him.....he doesn't have a say in having Diabetes, he has no say on wether or not he needs insulin, has no say on wether or not he wants his blood checked. The only decisions he can make is HOW to deliver the insulin .....so yup.....it is his decision to make, provided medically the decision he makes WORKS !! And according tho his A1C's....it does work.....

    I think it is VERY important to LISTEN to the kids.....Ty didn't want to do the "class talk" anymore and I respect that.....I will have to ASK him how he feels about telling strangers...and if he feels I have done it incorrectly...thanks !!
     

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