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Friday, July 22, 2011

We're struggling a bit over here.

I am struggling.  But that's not what I'm talking about now.

Sweets is struggling, too.

Things are getting harder and I don't know what to do about it.

It started a few weeks ago.

"Mom, the kids in my gymnastics class keep asking what Dexie is."

"What do you tell them?"

"I tell them it's a monitor because I have diabetes."

"What do they say?"


"Does it bother you that they are asking you?"

"Yes.  It bothers me a lot.  It's annoying.  I don't want to talk about it."

Today we had the exact same conversation - just replace the word 'gymnastics' with 'tennis'.

We're also having issues with testing.  I'll ask her to come over to test and she'll say "NO".

Or with food.

If she's eating with friends, she does NOT want her snack counted.

Today we were playing at a friends house.  Three hungry kids.  They decided on goldfish crackers.  The other two immediately dig into the box.  Nothing wrong with that... that's what they are used to doing.

But that's not how it works at our house.

"Wait a sec - I'll get you a bowl."

"I don't want a bowl.  I don't want you to count them."

Today I said that everyone would be getting a bowl and that satisfied her.  The other day, the same thing happened but she was not as easily made happy.  I finally had to tell her that if I didn't count them, she didn't eat them.

AND... issues in general.  Waiting to be bolused for food at a friends house.  He had run on ahead and I needed her to wait just a second.  "I HATE DIABETES!" she yelled.

Today she was dropping fast on the way back home.  I caught it and gave her juice.  She was coming up... but she was angry.  ANGRY.  She cried.  She hit a pillow.  She stomped.  She did pretty much everything you would think a five year old would do to vent their anger.

I'm glad she's not holding it inside.  I'm glad she's telling me that kids are saying things and it bothers her.

But it scares me, too.  And it makes me sad.  It hurts my heart to see her struggle with these emotions.
We discussed things she could tell the kids when they ask about the Dexcom.  I told her that it was ok for her not to wear it during gymnastics and tennis.  Class is only an hour.  It's not highly physical.  I'm right there.  I tried to talk it through and make a plan together.

I let her hit the pillow and stomp and cry.  And then I pulled her up with me on the couch and just hugged her and let her calm down while watching tv.

I don't know what else to do.

So, what do YOU do?

How do you help your kids navigate through these issues?  What do you do when they start becoming aware and verbalizing that they are different and they don't like it? 

We need help!



  1. sorry to hear this! My 10 year old has been doing this for 6 years. She told me the other day that she gets tired of people asking her what her CGM is. She just wants to be "normal"! She wants to eat out of the bag, she wants to eat and not hear me say, "what's your blood sugar?" I think we hear "I hate diabetes" on a daily basis. To which I respond, "yes, I hate diabetes too and if I could I would take it for you" to which she responds, "no, mommy, I don't want you to have it". Sometimes I yell and scream and hit pillows too so that she knows I hate it as much as she does! But I always stand firm. She has to test, has to count, no grazing out of bags or I start taking things away. It is a non bargaining issue. Oddly enough, the days she fights the most are the days when her blood sugars are high. I'd be cranky too! I wish I had the perfect answer but I don't. I just have support from one D-Momma to another. Hang in there! ((hugs))

  2. *Sigh* I'm sorry Hallie.

    Justin does bottle it up a lot and that in itself makes me sad. I can tell sometimes he is aggrivated when I make him wait to go outside so that he can check his bg.

    I have noticed that he doesn't snack as much at parties anymore. I often wonder if its because he doen't want to check. Part of me is scared to really ask. Sad, I know.

    You will figure this out. I would have let her loose the cgm for tennis and gymnastics too.

    I wish I had some great advice for you. But I don't even have the answers for my own kid.

  3. Sigh. Poor baby - all our kids have to deal with SO much more than the "average" bear. :(

    For what it's worth, my DD had some serious anger issues within the first year of her dx. We took her to counseling for a while through the clinic at the children's hospital. Her counselor had type 2, so while she couldn't relate to the shots, they had some common ground as far as feeling high and low, policing food and counting carbs, and so on. It was helpful to her to have a neutral ear, I think, though I still think the most helpful thing for her was going to dcamp and making friends with other kids with diabetes.

    You are on the right track, I think, by letting her vent. We decided it was time for help from outside when she started having trouble getting along with friends at school and taking swings at her brother. Once, she got him up against the wall with her hand holding his shirt at the neck and was shrieking at him, for some minor thing that I don't even remember - and he wasn't much smaller than her at the time. You may not ever see anything that drastic - Sweets is telling you how she feels, and Miss M is *not* one to share her feelings. She bottles it all up inside. It may be that Sweets just needs to have her feelings heard, and validated, and having you to talk through it may be enough. If not, I would suggest finding a counselor who DOES have experience in working with kiddos with chronic health issues, even if you can't find one who has diabetes. ;)

    It's tough, not being able to make it all better. I think that's been one of the hardest things for me about this whole thing. I can't love it away, I can't reason it away, I can't just play by the rules and have it go away. It might calm down and play nicely for a while, but it always ends up wanting to be the center of attention again.

    Hugs to both of you.

  4. We are in the exact same boat with Adam, Hallie. Adam is 5 just like Sweets, and is having the same issues - doesn't want to be tested, doesn't want to wait to be bolused, doesn't want his food counted. He's ANNOYED all the time. We are on a Dex break because of this. I can see it in his eyes when he just wants to be done with it all, and it breaks my heart that he can't. :(

  5. You handled it great. Awesome, in fact!

    I don't know anything else, except to listen -- develop a plan -- allow them to be expressive...and lots of hugs.


    Hope tomorrow is a better day.

  6. Oh, poor little Sweetpea. I really sympathise. It's hard to see your little one struggling emotionally, isn't it. I struggle with that, when Isabel does it too. She has never had a tantrum specifically about diabetes but will occasionally not want to test BG, or sit still while I do a bolus. With her it's all about control - when SHE decides it's time to bolus or test, then she lets me do it. So my tactic right now is to back off and do it in a few minutes. I just tell her that she can't have her snack/dinner/lunch/whatever until she does test, and stand firm on that. It's not often at the moment but I'm sure episodes like this will increase. But it helps that Bob also has T1. He is firm with her and helps me to be firm with her too. He is able to say "Ok, I know you don't like it, but it's part of life, it's what we do....and do you see Daddy making a fuss? No, we just get on with it." And so on. Like the commenter above said, it's a non-bargaining issue. Isabel at 4 already knows what "non-negotiable" means! That sounds unsympathetic, I know, but he says it with a great deal of sympathy and cuddles. We don't talk about diabetes much on a day-to-day basis, at home, or make a big deal out of it with friends and family. So although we don't sweep it under the carpet (we do things like testing and bolusing quite openly and explain if asked) we don't make a big thing of it, which I think helps her to accept that it's just a normal part of life, something she has to do. She has never said she hates diabetes, yet - but it's never something I would say, or Bob, so I guess we won't get that for a while although I'm sure we will at some point! Then we'll sit down and have a talk about hate as a negative emotion, rather than about hating diabetes per se. Bob and I have discussed her emotional support at length and he is quite confident that as long as we (a) empower her and give her SOME choices (within reason), (b) explain to her clearly and matter-of-factly the consequences of not looking after herself, and (c) most importantly, ensure that she knows she is LOVED, whatever she does, she will be OK. I trust him on that - he's usually right! I hope you get things worked out with Sweetpea...she will get through it OK, with your support and your love. That's the main thing, that you love her.....she knows that and that will get her through. Stand firm and hang in there! You can do it!

  7. Oh man, my heart hurts too! Its GREAT that she expresses her emotions for sure, Im not always so lucky with Maddison. :(

    I think all kids go through this, and then go through it again and again growing up through all different ages and stages. With Maddison I try the "quiet" approach, meaning I help keep Diabetes "quiet" when she is having one of these spells. Its not really because she is ashamed of the disease, sometimes she just doesnt want others to know, and there is nothing wrong with that. Even as an adult with Diabetes I like to keep D quiet. It DOES make you feel different. It DOES change the way others see SHOULDNT, But it does.

    There is a fine line between being secretive and hiding Diabetes and just wanting privacy. No wise words of advice for you, but I think every child with Diabetes deserves some privacy....Im just not sure yet myself how to handle all this!

    ((HUGS)) I know how you are feeling!

  8. I imagine one of the main things is the lack of control and choice. They got thrown this and have no choices. So maybe if we can involve them as much as possible in making decisions it will help. Like maybe involve her in pre-planning a bit. Start to coach her ahead of time about how many goldfish she can eat, maybe count out how much two or three of her handfuls would be, so the two of you know you are keeping track but her friends don't. Or just talk about situations that are coming up and get her input beforehand about how she wants to handle them. just giving back as much power and control as you can so it feels less frustrating day after day.

  9. Oh, it breaks my heart that Sweets is so upset about everything.

    To be honest, though, I feel that way a lot, too. I don't have D, my body overproduces insulin, but I test and treat lows and count carbs and keep a VERY close eye on my blood sugars thanks to hypoglycemia unawareness. It still surprises me when the thought of "I hate this, I wish I didn't have to do it" runs through my head. It goes in stages, and there are times when I hate everything that comes with managing my disease and there are times when I don't. There are times when I feel very different and there are times when I only feel a little different. Feeling different isn't something you get used to, but it does get easier to deal with.

    My guess is Sweets is just beginning to notice that she's different. It will take her some time to learn how to deal. I like the suggestion of a child psychologist, one who has experience dealing with kids who have labor-intensive chronic illnesses.

  10. I don't have much more advice than from when we talked. But reading it all laid out...I. just wanna hug you both!

    Its sucks. And sometimes its the simplest of things that have been altered by D that affect us the most.

    Love you!

  11. Ah geez! I am so sorry to read this Hallie. However, like you, I think it is fantastic that she is communicating her feelings with you and that she is getting out her anger. I think that in itself will help her over-come or accept some of the inevitable. Unfortunately, things are different for her...and sometimes...we cannot change that. I don't remember going through this with Joe. But, he is a block head (smiles). He has called his friends out on "staring" at him before when he needed sugar on the hockey bench...He has cried a couple of times. I listened...I think that is the biggest thing you can do and you ARE doing it.

  12. Oh, Hallie... this makes me so sad. I want to cry. You handled it great, as much as you can. But I feel so much for Sweets... I remember this type of thing specifically (minus the pump and CGM). I remember being "different" and not wanting to be. Just being like everyone else and not being singled out. God, it made me hate diabetes. Often, it still does. But you can only do so much - I like the suggestions above about losing Dexie a bit for those tennis or gym times. I know she's only 5, and my lack of parenting experience may show here, but is that too early to take a measuring cup so she can learn the amounts without needing a bowl. Then she could bolus... But again, I don't know. Might not be yet. All I know is, I am so giving Sweets a hug next time I see her. Please tell her: it's OK, no matter what everyone says. And for you and J, as little comfort as it may be right now, know that IT WILL get better.

  13. That's actually very typical of kids generally; meaning the way they react to a given situation can change in a minute, which is what makes parenting a never-ending challenge. Add diabetes to the mix, and you have a struggle. Really, try not to stress over it because its nothing you did wrong or you can change by doing something different. Kids are (dare I use this word) fickle. We do the best we can and move on to the next thing. You can take advice from others who have tried similar things, but the reality is that every child and every situation is different, as is every situation. That's a constant, everything else is likely to be in a state of flux. As I noted, we deal with it and move on to the next thing, but its not necessarily anything you can change, its part of being a parent.

  14. (((Hugs))) to you! Poor kid. It's tough. It sound like you handled just great.
    I think this is typical of everyone with D, regardless of age sometimes.
    It's frustrating. I dont hit a pillow, oh wait scratch that... I have. I think it's good that she can talk about it with you. She wants to be like everyone else. You are teaching her, that she is, but some things have to be done a little differently. That's awesome. Despite the venting (which is normal for all ages) she is very mature for her age, and she has one terrific Mama! Hang in there! <3 you!

  15. So much to deal with, I am so sorry she is going through this right now. All of our kids do, they are stages and they come and go. I can just tell you what I do whe. Grace goes through stuff like this, and maybe it can help you and her.

    I give her more independence with her diabetes and more control. Part of the situation, for my gal, is the total loss of control. I can't eat how the other kids are, I need to wait, I need to test when you ask me, etc. So I go about teaching her how many carbs are in a handful of goldfish and how she can bolus herself for it. I ask her to test in the next 15 minutes and if she does, I say nothing. If she doesn't, then I ask again. I let the control shift back to her. We all want to control our lives, even the little kids.

    What if she had a break from Dexie for a little bit? A week off perhaps? Just an idea.

    And I let her let it out. And I try to empathize. Which I know you do. I also let her know shes not alone, so she calls up a friend with D and talks about it. I make a list of all the things we hate about D and write it out. I get it out of her, any way I can. Then I tell her that we can move on.

    These times will come and go. What I do know is that releasing some of my expectations, and letting my kids regain some control, however that can happen, is what has worked for me.

  16. Hallie, Kate was dx'd during Christmas vacation and I didn't want her having to go to school and spend all day explaining so I wrote a letter to the parents and had our class mom forward it to the class. I explained what Type 1 is, reassured them that Kate is still Kate, etc. I also added links to JDRF and other helpful websites. It really helped cut down on the questions...and parents appreciated being able to be proactive with their children. Another thing we did was schedule Kate's pump start before the school year ended...she had only three days of school left. So her classmates are already familiar with the pump and that will make the start of this school year easier.

    As for the counting out of snacks...I took the advice from another mom and just buy the prepackaged 100 calorie snacks...everybody gets the same amount. (and knowing that childhood obesity is on the rise, I don't feel badly about limiting the size of other children's snacks...they need to learn portion control just as much as CWD's do!)

    There are times when we have to explain the pump, the carb count etc. and I think the fact that Kate has watched her brother struggle with a food allergy has made this easier....we are used to asking for special things at restaurants etc. As her brother said "all kids have issues"....we just need to keep reminding our T1's that other kids have issues as well.

    You are doing such an admirable job of handling T1 and helping Sweets learn to manage on her own. It is easy to forget that some of the acting out behavior is really just part of growing up. When Kate gets weepy, I have to remember that she is an 11 year old girl...crying for no reason is part of that stage. rebellion and wanting to do things her way are also part of that stage. Being a CWD is just one component of all of these amazing children!

  17. Oh man, we have not yet needed to deal with comments such as that...YET!! I know it will come and I know it will not be fun. You did great :)

  18. sorry, hallie! i agree with mike- you handled it beautifully! the most important thing is that sweets know that it's ok for her to feel that way, and that she can talk to you about it. i know you want to fix it, but you can't. but the fact that you allow her to express these emotions in an understanding environment is SO GREAT!

    hitting the pillow is good too. maybe experiment with other ways for her to get it out, like drawing, or working with clay/playdough. and when she gets older, she could write about it if she wants.

    D still makes me stop my feet and cry and say "it's not fair!" let her know the grown-ups PWD get sick of explaining it all too. she is not alone, and neither are you. you can do this!

  19. The reaction of anger and hate and sadness can be a "side effect" (that is what I call it) thing with the blood sugar being low or high. I have had diabetes Type 1 for 33 years. I was diagnosed 2 days before my 9th birthday - I have been on an insulin pump for 30 years now. There are days still where I am cranky about all of it. Sometimes I go and check my blood sugar and that tells me why I am cranky. Hang in there with her - we ALL have days like this and no matter how much anger, sadness, hate, or bad feelings we have it won't go away.

  20. Hallie, Emily is just one year older than Sweets and she has said TO A T the very same things...except replace gymnastics and tennis with ballet and swimming. It's like she is ashamed of it. She said when people ask, "it makes me scared and shakey because I don't know them. I don't want them to know what it is so I tell them it's nothing...or I tell them it's a video game I keep in there, or I tell them it's chocolate or money or a real phone." This was JUST quoted directly from her lips!
    I think you are on the right track! We too let Em vent and we listen and try to encourage her to not be embarrassed by it and that someday it will be helpful to her if her friends know she has diabetes. For now we just let it be. She knows she has the option of taking off her pump for short activities, but she usually keeps it on and for the most part handles the questions well. I wish I could pray this disease away. For us, that in itself is THE KEY... PRAYER! I could do NOTHING without the help of GOD.

  21. Hallie, I'm so sorry. I know how you feel. MC is the same way-as a matter of fact, she absolutely kept D a secret this week at VBS when she met new friends, and she NEVER had snack. Sad, but I understand. She got a tiny glance into "normal". : (
    Maybe you could buy the colored goldfish, and they could make patterns before they eat (while you count silently?).
    I like big snacks for company (or I send snacks for playdate)-like an apple with pb or low-carb (like cheese cubes and ham on toothpicks aka Tea Party!)
    I'll keep thinking! See you tomorrow! We're excited! : )

  22. Ugghhh...Hallie, I am so sorry to hear she is feeling that way. It is so hard to know they are hurting and getting burnt out on this disease. You are doing the best thing by just listening to her and comforting her when she needs to cry. Thinking of you and your sweet girl!

  23. My daughter gets mad sometimes too, she hates telling people about the D and hates when people ask her about her pump, she's now starting to notice people who stare at her when she checks her BG in public. It sucks. I'm sorry your Sweets is feeling so bad. Sounds like you are handling it as best as you can, just keep those lines of communication open and keep giving her the love and comfort she needs. Big Hugs to you guys!

  24. Hallie I wish I had some fabulous advice...but truly I think you're handling things really well, not obsessing, not getting into arguments, sounds like you're knowing where to draw the line and where to let her put her foot down, too. You guys are a great team. I am sure there are moments of frustration...but it can't all be unicorns and rainbows, right?
    Enjoy the weekend :)

  25. ::hug:: I'm glad Sweets is letting her feelings out and sharing with you.

    One thing that we always do is measure everyone's snacks/ meals. That way DD's being measured doesn't stand out at all. DD's little brother is used to his food being measured/counted. If you want to eat at my house, you have to wait until your portion is measured out, period. (Of course I get labeled as the strict mom, but I'm ok with that!) We also use prebagged snacks (bagged at home or purchased) and send along extras to share with friends if we'll be out somewhere (park, fair, etc.).

    I'm sure you've thought of that already... it's just the only thing I can think of that's even remotely helpful. Sometimes D just stinks, and our d-kids need to vent that just as much as we do!

  26. What?? Thought I already commented on this...must be losing my mind!

    Ally has gone through this kind of a phase off and on for about the past year. Kids at school asking lots of questions, brings it on a lot for her. This is why I think it is so important to help her educate her classmates and friends. Unknown things can be scary to other kids. Even though we make a huge effort to educate friends, classmates, teammates, Ally still gets the questions and it still bugs her from time to time. I think you are doing the right thing by letting Sweetpea vent and get it out. Not making her feel bad about how she feels will help her, even though as a parent I know you want to "fix" it and make it all better.

    And can I please get one of those help buttons? Wouldn't that be awesome if whenever we had a question about D, or better yet...a question about raising kids all we had to do is hit that little red button?


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