Mom Feeling Defeated and Fustrated


(Lisa) #1

Hi, I have a 13 year old son with T1D, diagnosed at 2 years old. I know he is going through puberty but it’s a REAL struggle. I don’t know how to get it through to him when it comes to testing and pumping. He either forgets to test or forgets to pump, eats more than he should, eats candy without asking me or pumping for it. I find myself chasing his numbers to come down on a daily basis. I am doing my best to make him be more independent and responsible but it is just making his numbers sky rocket up to 300 and 400 range on a regular basis. For our last check up his A1C was great, 7.4 which it had been in fluctuating from in the 8 range these past two years. I was pleasantly surprised to see it at 7.4 but it seems from then to now it has been going downhill. Putting more of the responsibility on him isn’t working so great. I sometimes feel that i am failing him. I feel like I have no control of the matter and it scares me and brakes me down emotionally.
I guess I am looking to see if other moms and dads are going through the same thing. Is there something I could do differently to help him understand the importance of taking care of himself? I have had his endocrinologist talk to him, his dad, me, social worker. I feel like I am at a lost.


(joe) #2

@Lisa1231 hi Lisa,

The truth of the matter is that you can not ALWAYS be there to test his blood sugar and give him insulin. If you could, at 17 or so when he goes away to school or begins another chapter of his life, you’ll lose control at that moment. You can’t be there all the time, he will eventually be on his own - so all you can do is prepare him and let go of the results.

High blood sugar is miserable, he doesn’t need a doctor or a lecture from people who don’t have diabetes. He gets his just punishment every time. At 13, he has got to learn it for himself. A great comedian once said that at 13 he realized his parents were idiots, but he was amazed at how smart they got and by the time he was 30 he realized they became geniuses.

One of the hardest thing you’ll ever have to do as a parent is nothing. Sure you are better at managing his diabetes than he is I bet you are a pro, it’s just not going to help him right now.

#1 advice I can think of - take care of yourself. Kids do not listen to what you say they watch what you do. don’t get me wrong they hear you - and the are probably 90% more likely to comply when you are not around, but what you do is very much more important.

If you really feel the need to - create a contract and let him do his own diabetes management. IF his a1c goes up to I don’t know some number lets say 10, then privileges can be revoked because he can’t demonstrate responsibility. i think it’s the same gig as driving, he’ll be behind the wheel in 2 years with a learner permit - if he isn’t responsible he can’t drive either… something like that may work. your end of the deal may be no more snooping or checking over his shoulder or food police or whatever. let him do it he has to eventually.

If you think he’ll break with high blood sugar, while the body may be fragile, it can take a great deal of stress and punishment. I still say the high blood sugar, and low for that matter, are punishment enough.

I don’t envy you - my boy is 8 and handing over control and responsibility is a longer way off for me, but I do know that he’ll be 18 before you know it and your job is to teach - not to do. I wish you good luck and peace and patience and trust.


(Lisa) #3

My brain knows you’re right in all you said but my fears take over. He has been hospitalized once with DKA while he was with his dad out of the state on vacation and i guess that scared me even more. I know i have to let go and let him become more independent with it but it’s just so hard. Thank you for the advice and good luck to you and our son in your future journey with Diabetes.


(Patti) #4

I’m so sorry you are having a difficult time with helping your son. I’m a T1 female for 27 yrs; my nephew was diagnosed his jr year in high school & I watched my sis go through the frustrations too. He would barely test, leave every morn without eating and just basically pretend he didn’t have T1. He’s in college now and doing somewhat better, he’s laid back about it but has learned to cook his meals and eat healthy just from being on his own. I’ve talked with him about it all, being concerned. I do think you need to help him as much as possible while pushing him to be more responsible; maybe a watch with a timer to remind him to check his BS every 3-4 hours. I actually do that myself to not forget. Extreme highs & lows can be dangerous and can affect so much with his body and daily functioning. Take it one day at a time, tell him that he can live up to this challenge, and so can you!


(Lisa) #5

Thank you Patti.
My son is “very” laid back about it all. He knows how to carb count and knows how to do corrections on his pump. He just doesn’t think much about it if he forgets to test and eats or if he forgets to do his pump. To him it seems like no big deal but meanwhile i am jumping out of my skin worried about him. He gets an attitude with me sometimes if i constantly remind him to do his pump or to test himself. I know this is all MUCH more harder on him being a T1D but i just worry for him so much. Do i do too much or not enough or let him be…just not sure.


(Bill) #6

Hi, Lisa.

Oh boy! The teenage years! It’s a wonder any of us survive.

I’ll keep this brief. You might check to see if there is a summer camp for T1D youngsters in your area. I attended Camp Sweeney in Gainesville, Texas when I was six years old (I had had T1D for a year by then). That was about 59 years ago. Later when I was in graduate school I spent two summers as a counselor at Camp Sweeney; I was the head counselor in the junior boys’ cabin.

It is difficult to fully describe what summer camp can do for young people who have T1D. At summer camp they are “normal” (almost everyone there has diabetes). The interaction with other campers, the education, and the other experiences there can sometimes help a young teenager develop the resolve to manage their diabetes better. The effects of camp involvement can sometimes last a lifetime. I guess I am proof of that.

Camp also “gets the monkey off your back” for a while. It shifts “responsibility” for diabetes management onto the shoulders of the staff and each camper - the campers become “partners” with the staff in management of their diabetes. It is a great step in developing a mature attitude about diabetes management. Nothing is guaranteed, but sometimes it is quite a help.

Good luck to you and your son!

Bill


(Patti) #7

Finding that balance is tough enough with a son especially when they have attitude. I remember my son at that age and boy did it get tough at times, but I do think the constant pressure for your son to be more responsible isn’t a bad thing; it goes so fast and then college happens. My nephew felt so different & didn’t want anyone in school to know, luckily he knew of another classmate with it too. The habits now will help him when he’s out of H.S. I kept telling him that he was so smart and that he could do this, which he was and he IS doing it now on his own in college. Still really laid back lol, but he’s doing it on his own. Stay with it and keep moving forward!


(Gabriela) #8

hey
I am not a parent so I cannot truly speak to that perspective but my parent-but especially my mom and I had issues all the time with arguments over reminders of when to pay attention to it and lack of independence and blah blah. now that I’m finishing college and I’ve been with roommates and even abroad with it, then one year back home to save money, now with roommates again-I’ve realized what she has gone through more too. I think part of that realization is talking to a professor I’m very close with about her children and her concern about one of them being diagnosed with autism, and babysitting for her and another professor. Anyway…the concern is natural and as the kid-role I know it can be annoying or whatever but I know it comes from such a place of love and care. Sometimes it is hard to hear other constantly worrying about me because it makes me feel like I am a problem, a burden, I need to be taken care of and helped and can’t do things on my own and blah blah (no not asking for pity), but when I talk to my mom about what that brings up for me both of us have understood each other a little bit better. a little. I’m still 21 and get calls everyday just asking whats your blood sugar???etc etc…ALSO the attitude as I said-I so get it. I so so so get it. I was there. I am still there. It’s especially hard at 13 because you want to be cool and not rely on your parents as much or. maybe friends started doing literally everything by themselves and you feel like a baby…the attitude and stress and adrenaline also make blood sugar go high!!! so if he gets snappy at you try to remember that he doesn’t hate you-he hates the disease and that the snap comes from the number!!! I’ve had times even with college friends let alone parents when I snap and get really pissy and then check and I’m like hey sorry that 400 is why. Also I have been to the hospital too many times…so he’ll be okay…now after making some mistakes the extremes both ways that end in the hospital are what I avoid by all means necessary…

sorry this was so long and unorganized… I hope this helps even a little.
good luck


(Lisa) #9

Thank you for the info Bill. I was always scared to send him off to camp without me but maybe that’s what he needs.


(Kathryn M.) #10

Hi Lisa

I’m actually thirteen as well, and I know what it’s like. I was diagnosed when I was four, and I actually was forced into the hospital last October. My bg was out of control and I was throwing up everything I ate. After I was released, about a day and a half later, I realized how important it is to test. For a while I was very good about it, but eventually started to slip again. Then, I finally realized what my problem was. I only wanted to test when I saw my monitor out or in my direct path. I would leave it in obvious places and around in areas that I would see it. If you try that with your son, and give him more independance, it should help. Tell him that you’re not going to do things for him if he isn’t going to make the effort to try and help himself. You could even ask some other people to tell him the long term effects of high blood sugar. Blindness, loss of limbs, and kidney damage are only the beginning.
I hope this helps!


(Lisa) #11

Thank you Gabriela. I so needed to hear from someone who was in his shoes too. I’m so worried about how I’m feeling and what I’m doing right or wrong but I need to also think about how he’s feeling. Thank you for sharing with me. I guess I should really stop smothering him especially in front of his friends. Lol. He feels I’m always harping on him too much with reminders, especially with his friends around. It’s hard to let go some when you’re a parent.
Thank you again.


(Bonnie) #12

Hi Lisa,
I remember those days, struggling with how much independence to give my son. He is now 21, diagnosed at 5. The docs always pushed for independence, but my gut told me a balanced approach would work better for us. My approach was a little different than some of the replies I have read here. I tried to shoulder his burden when I could, providing help when possible so he could get on with the business of being a kid. I knew I wasn’t going to college with him, but 5 years (from age 13-18) is plenty of time for growth in the life of a young person. I found he grew and matured at his own pace and it was best not to compare him to other kids, especially not to girls! When he was 13 I wondered how he would manage at college; at 17 I could barely remember the middle of the night blood tests. I guess my advice would be to be his coach and diabetes partner. He’s still so young and there’s still so much to teach him. He doesn’t have to go this alone! I’d also have an honest convo with him, asking him what role he would like you to play. If he’s keen to let you recommend carb counts and do a Dexcom change because he wants to watch a big game on TV, etc, then do it. The flip to adult-like maturity happens almost overnight, but not for several more years. And when it does, you’ll be booted out of the picture for a little while - your goal then is to be rehired as his T1D consultant! You’re his mom; ultimately you know best what level of independence he is ready for. Keep loving and supporting him hard - that’s the most important thing! Sending you love!


(Gabriela) #13

Hi again,

yeah of course! I get that it is hard to not ask or remind, so it is totally okay to. I’m sure at least sometimes he needs it, he just doesn’t want to deal with it. Take a breath and know that what you’re doing is your best and that’s all there is. In the end I’m grateful for my mom being “annoying” as you’re talking about.


(Genavive) #14

I can relate to this. I am a type 1. My daughter is also a type one. 14 and she knows everything. You know that age. Now compound it with a health issue and it’s more horrific. Just keep the faith. Does he have a Dexcom? I find that helps so much more!


(Dennis J. Dacey, PWD) #15

Bonnie @bonnieoneil, I like your really positive approach - how you let your 5 year old son be a boy [ while you watched closely but not hovering] and how now you have become coach and consultant. Yes, let kids learn according to her/his individual ability and be independent.


(BookwormNerd13) #16

Hey Lisa!
I can’t speak from a parent’s perspective, but I do have a pretty good idea of what your son might be feeling.
Being a teen with T1D is incredibly stressful. Everyone at that age feels a constant pressure to “fit in”, and having a condition like T1D makes that a lot more difficult. Because of that, he feels a resentment towards his condition and doesn’t want to deal with managing it.
There’s no easy solution for this. The truth is, the more you remind him, the less he’s going to want to take care of it. I recommend having a talk with him; tell him that you’re going to allow him some more independence with his T1D care (you decide what this means, it’s different for everyone). But also make it clear that if his numbers don’t improve, you’re going to take back some of that control. He’s not going to want that to happen, so hopefully it’ll give him an incentive to manage his own blood sugar. Don’t expect perfection–my mom always told me that when I was with friends or at a party, my goal should be “safety, not perfection”. That helped me a lot because it took off some of the pressure and stress that came with managing my condition, which, ironically, made me take better care of myself. It’s easier to check my blood sugar when I’m not scared of the number on the screen.
Another thing that might help is finding him some friends with T1D to make him feel more “normal” (ugh I don’t even like to use that word). I’m part of a group chat of 21 teenagers who all have T1 and it’s definitely helped me to feel a lot more comfortable with my condition. If he has Snapchat, I’d love to add him! Otherwise he can email me at abigaelparrish13@gmail.com. I’d also recommend looking into a T1D camp if there are any in your area!
Oh, and one more thing (sorry this post is kind of a mess lol)–have you considered a CGM? I recently got one and it’s a real game changer. It’s given me SO much more freedom and I love not having to worry about checking my blood sugar at school. Plus if he gets Dexcom (I’m not sure about other brands) you can see his blood sugar on your phone all the time, which might give you some peace of mind as well.
Hope this helps! Please feel free to reach out if you have any questions or want to talk.


(SuperSam101) #17

What I am about to say may or may not make any sense, because I am currently at a blood sugar level of 20.7 this isn’t because I have snuck in any sweets or haven’t injected. In fact it is quite the opposite. I went to sleep last night on a level of 15 and woke up feeling terribly exhausted. I then injected both my long acting and short acting insulin and waited diligently to eat. Once I had waited the 15-20min I made myself a nice cereal, however when I got to college I checked my blood sugar and it was (what it is now) 20.7. This won’t make sense but the point I’m trying to make is… have you ever considered that he may feel that no matter what he does it feels uncontrollable. That maybe he does do most of it right and is rewarded with little but a disappointing test result. I know I definitely feel that way and in the past I gave up and ate normally for a day. Surprise aurprise my blood glucose levels rose, but not to more than what they were when I injected. So what then is the point of injecting to “maybe” stay on a respectable level? Maybe he is having one of these moments like the one I am currently re-living. I am not happy about this. I do everything right: diet, insulin, blood sugar etc ,alas I am rewarded with a disappointment yet again. This maddens me to the bone. One thing important to remember though is definitely this word, poem and meaning… INVICTUS


(SuperSam101) #18

If you want to make him see the importance of looking after his blood sugar just show him some people who’ve had their toes cut off or something and say. “See that’s what’ll happen to you…” lol :joy:


(KaraG) #19

Hello, Lisa! Hats off to you for parenting a difficult diabetic teenager. My younger sister and I were diagnosed in the same summer… I was turning 16 and she had just turned 9. That said, I lived through young adulthood while learning to be diabetic. My little sis is going through the same phase now with about a decade of T1D experience under her belt.
I guess more than anything I’d just say that I agree with all of the advice you’ve gotten to let your son work it out. I’ve been the cantankerous teenager AND the frustrated adult family member. I’m here to tell you that the more you push, the more your son will feel that he’s not living up to an enormous responsibility.
That’s not to say that you’ve been pushing, mind you! It’s so helpful (especially when hospitalized with DKA as you mentioned earlier) to know that you have a support system who truly cares and wants to help. On the other hand, I have been through a several year phase in which I just didn’t feel like dealing with “it all”… in that mindset it’s only made worse by constant questioning. Diabetes is a fine dance but as Joe said your son pays the physical price already.
This may sound silly to you -it does to me- but if anything his resolve to ignore reality is an indicator of serious mental strength. If he can deal with waking up high day after day, he is one tough cookie. This mental fortitude will eventually pull him out of the stage he’s in. I promise!
In fact, maybe put that idea to him. Of course it’s ridiculous to praise poor management, but if you acknowledge that he is struggling and overcoming it… it will likely be a boon to his spirits. Just some ideas from another crazy type 1, and good luck to both you and your family!


(Lisa) #20

Thank you so much for the advice. He will be getting a CGM next month. He has not wanted one so I haven’t pressured him to get one. But now he’s thinking about it since we are going to change pumps. I’ll ask him if he would like to reach out.