My daughter is 11 and was diagnosed 2 years ago with Type 1. I am really looking for some advice/help/direction for her, particularly from either someone her age or another Mom who has been through this because I really don't know how to help her anymore. I feel she is hurting in many ways but won't talk to me because she thinks neither I, nor anyone else, will understand her.
I worry about her physically -She is not eating her lunch at school, yet is lying and telling me she is. Her blood glucose levels are completely out of whack (obviously partly from not eating her lunch and then sneaking snacks when she gets home .) We "addressed" this problem about two weeks ago through chats with the nurse at school, but we are right back to square 1 as of yesterday when I found out she told me she was going to have one particular snack after school and ended up eating three very different things. I also found two sandwiches in her school bag from this week (she reports she is eatign her lunch.) While I do plan on speaking with the school and requesting a meeting with the social worker/counselor and nurse (read more as to why..) i am afraid this will only make her feel more alienated.
She is writing notes to a friend saying she doesn't want to eat anymore, doesn't want to take her shots, no one understands her, she cries, has nightmares, etc. yet acts bubbly most of the time in front of me. I think she just wants me to think everything is fine, but obviously it's not. I found the note in her room and asked her about it (I think she really wanted me to find it as a cry for help) and she still won't talk to me. I am so worried about her. I don't know where to begin...counseling, doctor, school personnel
I'm neither a girl your daughter's age nor a mom, but my sister went through something similar in her latter years of high school. My recommendation would be counseling. There are therapists who specialize in diabetes. See if there is someone like that around where you live?
It really helped her out and now she lives by herself in Rhode Island and takes good care of herself.
Also, if you know she's lying about eating/sneaking snacks, have you tried calling her out on that? Try to instill the fact that what she does now, how she treats her body related to diabetes, will have a tremendous impact (good or bad) on her long-term health. Be empathetic, but you have to try and reach her logical side and convince her that she isn't doing this for you but instead she has to do it for herself.
HI it has been 50 years now that I have had type 1 diabetes... and I too was just like your daughter until one day I ended up in the er.
that visit to the er scared me so much.. that i knew then that if i did not do as i was told to do then that would be the end of me.
So i finally listened and have survived for 50 years... how about getting her a dexcom sensor and an insulin pump..
reward her for keeping bg log.. for eating what she has to eat.. for not lying...
get her a book on the complications of diabetes... she needs a mentor... someone who is living with diabetes.... someone who is in high school and knows how she is feeling.....
Hi - (2nd time I'm writing this response, 1st one got lost, sigh...)
I would suggest finding a counselor for your daughter. You could ask her endocrinology clinic if they have one they would recommend. A counselor who specializes in children with chronic illness would be the best option, but they can be few & far between. If your daughter doesn't see an endo, you could try her family doctor or call the endo clinics around you to see if they can recommend one. I think you will find no one wants to see a child suffer through the ups and downs of living with a chronic disease.
The teenage years are hard. I'm guessing she's in 5th grade? When the pressure of being "different" seems like the world on her shoulders. She is going to struggle with this for a few years and I think having a counselor to get her anger/thoughts/emotions out to can only help. I did the same self destructive things when I was 12 (diagnosed 33 years ago at age 2). I can also see the "I don't want to be different" showing it's face in my daughter (9, diagnosed at age 4). Our kids have so much to deal with as pre-teens and adding type 1 diabetes and all it's rules, regulations and responsibilities makes for a very confused, and angry child. I know you want her to open up to you, but in theory - you are the bad guy in this situation (totally not your fault and the conversations you are having are totally necessary). Teenage girls do not talk to parents about their problems, and I think the growing up too fast happens to our kids with type 1.
I hope you know you are not alone. There are a lot of families who struggle with the pre-teen/teen years of non-compliant behavior and lots of anger. Your daughter is mad, and she is probably hating life right about now. She is different and there is nothing she can do about it. I have to agree with her, that you and her friends can't possibly understand what she is going through. I really think it would be helpful for her to have a person to vent to. She's probably not going to want to do it, but I'd try to make a deal to try going to the counselor for six months as a trial. And the counselor will say - "she's a fine well adjusted child" for the first few visits... but once your daughter trusts them, I think she will open up and the counselor can help her work through her emotions. She has a right to be ticked off at the world - she just needs to learn how to work through it.
I hope this helps. Feel free to private message me if you need help finding a counselor or other ways of trying to help your daughter. No mom should have to go through what you are going through and what my mom went through with me. She will appreciate what you are doing for her now, someday.
I was the same way when I was her age. I am 30 now, and it took me a while to realize the importance of taking care of yourself. I think an insulin pump might help. It may be another thing she wants to hide, but it is easier to be "normal" with her friends and have a little more play in what she is able to eat. One thing that my mom did for me when i was in 6th grade was she talked to teachers and found someone else in my school with T1 and she arranged a period like once a week to talk and eat together and tried to make me realize I may never know a lot a people who deal with the things I have to but I am not totally alone. And I am sure the other girl who I met with was able to see that to.
I was the child so I don't know how hard it was for my mom to go through worrying about me. I am sure it is hard right now to be the mom in this, but keep at it, and she will get it and thank you one day!!
I'm going to agree with the other advice and say get her to a counselor and a counselor that she likes (which may not be the first one you go to). She probably is feeling as if the diabetes is controlling too much of her life (which is understandable) and she's trying not to let it control her. She's also so young that she probably doesn't understand how diabetes can destroy her body. Talking about the potential complications is just too abstract, to far off in the distance for her understanding. When I was a little older than your daughter, I was in the hospital and met a 18 year old T1 girl who was in the hospital to have her toe amputated. Meeting her gave me a concrete understanding of what diabetes can do. I still remember the condition of her legs and feet. It made a lastly impact. Somewhat of a scare tactic. Also, I went to camp every summer which was great - being surrounded by other T1 girls going through the same thing as me was very supportive.
Make sure she knows that she's allowed to feel what she's feeling - I was diagnosed much later than her, in college, and my mom came out, and we were in the hospital for a weekend giggling and laughing and having a great time, and she would go to sleep, and i'd go out in the hall and cry.
On the third day my mom was there, she said something about how she can't imagine how hard it must be for me, and I broke down. It was like she'd given me permission to feel how I was feeling and express it. Even though you can't understand exactly what your daughter is going through, you do know it's not easy, and letting her know that you know (both of those things) might help.
I also think finding a counselor is a good idea. You might want to work out a total confidentiality rule with the counselor, instead of having the semi-confidentiality that legally parents have. It shows your daughter you trust her, and you aren't trying to be nosy.
Also, if you can find someone older with diabetes who she could hang out with - like a "big diabetic sister," that might give her a little more hope. I think hope is a better motivator than fear - why bother trying to take care of yourself when you're just going to lose your feet, go blind, and need dialysis? Especially for someone your daughter's age, the future is probably pretty black and white, so telling her about what *could* happen might sound to her like you're telling her what *will* happen.
Good luck! You're already doing the right thing by asking for advice and being concerned. Your job is as hard as her's is, so don't get down on yourself when there are lows. You'll get through it (both of you!).
My Daughter is 11 years old and was diagnosed 2 years ago as well. Though I am not having any of these problems with her (as of yet-keep my fingers crossed) I would love to chat with you if you would like. Maybe we can hook the girls up either on the phone or through email and they can talk about things.
Please let me know! We would love to do anything we can to help!
Thanks everyone for all of your replies. Things have gotten a bit better and I am working with the school personnel as well as the diabetes clinic folks.
I was dxd when I was 13, and I never went through such drastic things, I think just because I have such a loud conscience. :) But it's obvious that she wants your attention, if you're finding notes and such. Maybe she just really needs to talk to you more about what she's going through. It's true you can't understand, unless you yourself have diabetes (I've hollered at my parents plenty for that unjust fact!) but you can be sympathetic and act as a shoulder to lean on for your daughter. It might be good to get her to cry and let her feelings out in front of you-- I know that always makes me feel better, with my mom. And having a time when you two-- just the two of you, no one else-- talk about life and diabetes might also be helpful. Not that you're not trying--- I'm sure you are :) but some more encouragement rather than monitoring might be just what she needs. Good luck!
When I was in elementary school, especially in 2nd grade, I hated eating breakfast and particularly lunch at school. I would not eat what I was supposed to and then go low. Even though her strong emotions regarding diabetes are the root of the problem, maybe you could work with her endocrinologist to change her insulin doses so that she doesn't have to eat much lunch and can eat when she wants to at home. Little things like that may help comfort her by giving her some say over her life that the rest of diabetes doesn't often allow.
I know my mom supports me and wants me to be safe and happy, but I have a nagging fear that if I'm low she will become really demanding and worried. I wish I could be assured that she won't freak out when I'm low, even though that almost never happens. I feel like when I try to speak up about diabetes to someone who doesn't have it, I'm not entirely heard because others don't understand. Just be there for her and listen if she ever wants to talk. I'm sure you would gladly do it, but even if she seems to be doing okay, diabetes is a silent disease. There's a lot of suffering under the surface of anyone with it.
I hope things continue to improve for your daughter!
Thank you so much Amanda for your perspective. I really do try hard to be encouraging and not "naggy" but it's hard as her Mom. While I try to understand (as best as i can) why she doesn't choose to talk with me because "I don't understand" it is also very frustrating and worrisome for me. I worry that she is keeping a lot of emotions bottled up,and quite frankly, I am also hurt that she no longer confides in me. I also worry that she is not being honest about a lot of things lately - from eating her lunch and sneaking food to using the computer.
I do have an appointment with the diabetes clinic's psychologist in a couple of weeks. I am hopeful that this might get the two of us on the right track.
I'm glad I could offer a bit of encouragement. And believe it or not, I totally understand where you're coming from because my mom has told me the exact thing about my brother and me (my brother has ulcerative colitis). She says she worries only because she loves us :) I think some kids are more open about talking about what they are dealing with, whereas others bottle it up. Again, my brother and I are just that way. He never wants to talk to my mom about anything!
Good luck with the psychologist. I'm sure you'll be back on track soon.
I just want to tell you I know what she is going through. I was twelve when I was diagnosed and it is extremely hard and confusing. I did not want to eat or take my insulin either. It is hard for your body to get use to it. i use to get terrible cramps in my legs, or my eyelids would swell. Insulin can make you gain weight and that was what i feared most. Please watch what she is doing and be there for her as best as you can without smothering her. I look back and wish my mom and dad made me check my sugar in front of them and take my shots in front of them. I use to skip doses or not check and swear up and down that I did. I am now 27 and I have so many problems. I can kick myself for the first two years for not doing what I was supposed to. Please make her do it though. She will thank you later and she will be around later to thank you for it. Be her friend and look up recipes and fun snacks that she can have. There are so many sugar free and low carb things out there now so there will be plenty to choose. I would glady talk to her if you would like because I know what she is going through. If there is anything at all that i can do to help, please dont hesitate to ask. I can maybe help her through my experiences and try to lead her on the right path. Its easier to talk to someone you dont know. You do not have to fear that you will be judged. Your daughter is in my thoughts and prayers.
When i was diagnosed I was around your daughters age. I did not cope with it very well and acted in similar ways. My parents put me in therapy and sometimes would try to sit in. For me it was easier to talk about it when my parents weren't there but it did take me a while to get me to open up about how i felt. The best thing i can suggest is to try and find a therapist that your daughter feels comfortable with. It took me a while to get back to my normal self because i had a hard time facing the reality of it. Also i know in the beginning i actually used to eat my lunch in the nurses office or snacks there because sometimes other students would constantly question me on why i was eating in class and it just made me feel more singled out and not want to eat. I hope this helps.