Hi,
My son Zach is 11 1/2 diagnosed with Type 1 10 months ago. He ‘embraced’ his new reality and was diligent about glucose testing, covering and correcting up until around 2 weeks ago. I just discovered he has been lying about checking his BG, then applying his judgement as to how much insulin to use to correct and/or cover. I just went to download his numbers onto paper last night and discovered the ugly truth about his lying. He insisted he had been testing and the monitor must be broken. Not quite believing this, I set up a brand new meter to do testing with.
At 3:00 am he woke us to say he was low and self reported a reading of 69. So we gave him a quick sugar, carb/protein and returned to bed. This morning when I asked what his reading was he said 102. I went to the monitor to take a look and found that the reading was not 102, but 302. Further Q&A led to finding out he hadn’t tested a low in the middle of the night, had just felt symptoms of a low and made up the number of 69. Well, at least it is understandable why his waking BG number would be high as essentially we treated a low that may or may not have been present.
I am saddened and confused by his deception about his diabetes numbers and treatment. His father and I are actively involved with his treatment, but encourage his independence also. I now feel that he cannot be trusted and must be managed a lot closer. He wants to know what he can do to regain our trust. I don’t know that I will ever really trust him again on this subject. The discussions have been had about the reality of non/mis-treatment of the disease. He insists he understands the severity and seriousness of it all…however, his actions don’t support the words.
Any advice from parents of kids in this age range with fairly recent diagnoses?
This is Suzanne, the Mom posting under my husband’s (Joel) sign-up
I’m sorry to hear about this Suzanne. I can only imagine how hard this must be for you and Joel.
I am not a parent and I’m not 100% sure that the advice that I’m giving is good-- but just some ideas.
I can speak mostly from your son’s perspective, as I myself am a type 1 diabetic (diagnosed at age 21 though). We all face diabetes burnout every once in a while. We reach the point where we are just tired of it all. Since it sounds like your son was doing very well before and that he still understands what he SHOULD do (he knows how to make up the numbers correctly). This may be a case of burnout.
I have had good months and bad months. In the beginning, my good months were really good and my bad months were really bad. It took me to find the right balance of how to manage my diabetes without letting it run my life.
I think that it is great that you have given your son so much independence… and he will benefit from that in the long run (or even in the short run as he already understands what to do). But maybe it would be best to take some of that independence away-- not so much as a punishment, but as an offer to help him manage his diabetes for a while. You decide what to do, when and what he can eat, you do as much management as possible (of course you can’t do it all, but at least help while he is at home). Perhaps you can frame this as helping him deal with diabetes rather than punishment. Eventually, I think that he will want his independence back and he will know how to take care of himself.
Mostly I can emphasize that this has been hard for all of you and he might be having difficulties accepting his diabetes right now. That does not make his lying OK, but it does help explain why he did it. He might just need help getting through this “burnout” and regain energy to deal with diabetes.
Hi Suzanne, sorry to hear about that. I don’t have a kid in that age range but when we were trained at diagnosis they talked about teen years (because there was a 12 yo that was diagnosed at the same time as our soon) and maybe to prepare us for the future also. They said that until the teen years are over, to monitor them. They said that teens are “in-the-moment” individuals and do not really grasp the long-term severity of lack or non management of D. They are aware of all kinds of tricks that teens do with their meters (like make a friend do a test instead of them, take the test solution instead of their blood, etc…). The kids are going to be annoyed by the supervision of course, but we do have to check.
I am not there yet, but I do keep it in mind… But there are kids that are more responsible than others also. Good luck.
Hi Suzanne,
I was diagnosed with type 1 in 1988 at the age of ten. I went through a period of this behavior a year or so after. This was before meters had lengthy memory or a download. I would make up numbers, record in my book and guess at my doses. I think my motivation was just wanting to be “normal”. After being diagnosed I was constantly being introduced by people (relatives, teachers, friends) as the 'girl with diabetes" which would then typically lead into stories of my great aunt so and so, or my neighbors uncle had diabetes and went blind or had no legs. This took a toll on me, as it would any child. I was pissed off that I had this disease that know one understood, including me, so I just stopped being apart of it to any extent I could. I shut down. This was obviously denial, extremely dangerous and totally stupid, but I was a kid.
As a kid with a disease, there are so many things that can isolate you, or make you feel completely different. It sounds like he does get what this disease means, but he’s obviously not coping well with the daily (lifetime) regimen. Find a way to help him do that and the behaviors will change. Start with trust.
I was diagnosed at age 10 as well. I was compliant for years. The teen years weren’t bad for me…but I got my burnout in college and it has been a long road finding my way back. Still, I get what he’s going through. Usually, the diabetes got back-burnered when other life issues took precedence or were stressing me out and I just wanted a little bit of freedom to be “normal.” Is his school life okay? How do his classmates, friends, and siblings talk about his diabetes? I wouldn’t be surprised if some isolated event like a comment or an embarrassing moment was enough to trigger a weird response to his normal care.
I agree that you have to step in to help him manage his diabetes right now. My recommendations would be maybe to check in with the behavioral diabetes institute website for suggestions, approach his endocrinologist or educator about teen support groups (he’s not too young to benefit from it) at your doctor’s office or hospital, and possibly consider camp. I never went to camp, but I understand that there’s such an atmosphere of empowerment and normalcy that it does a lot for kids feeling what he’s feeling right now.
My endo asked me recently what flipped the switch for me between my former non-compliant self and my success today. I think that for me, I needed to be forced to understand I wasn’t alone and that I didn’t know everything - adult self-awareness that I don’t see happening immediately for your son. But I think he needs to understand that he made a choice about his care that is not an option in your family. I don’t think I’d treat it as a trust issue so much as a team care issue.
i was diagnosed at the same age as ur son im now (16) i did the exact same thing your son was doing and maybe even worse. my mom eventually found out and was really upset with me. and came down on me really hard. i know she was just trying to help me do the right thing but she said that if i didnt get it together i would die. yeah shes pretty cruel sometimes. but i eventually got it together and now my A1c is about 6.8. i think you should mention the consequences to your son if he doesnt start telling the truth about his numbers but dont give up on him. im sure he’ll want to do the right thing
I’ve been diabetic for 30 years, diagnosed at age 5. I had issues with compliance and acceptance from age 14 until only a few years ago. I recommend that you contact the Behavioral Diabetes Institute to see if they can recommend a mental health treatment provider in your area. Diabetes can take a tremendous emotional and psychological toll due to the nature of its management. I tell people that diabetes is not just the disease of the person who has it, it’s the family’s disease, and it causes significant changes in family dynamics and how a family functions. It is concerning that your son has already started these types of behaviors, and in light of that, I think it’s even more imperative that you pursue a qualified mental health care provider. The sooner you address it, the less likely it will become a pervasive behavioral pattern. Please don’t punish or judge him though. Take a problem-solving approach, and present it like, “We need to get help managing this as a family.” It’ll help him feel less alone with it. Contact me if you like.
Thanks Leann. Suzanne and I (prior to reading your response) sat down with our son and had a discussion with him about the importance of taking good care of himself and the importance of telling the truth. We told him we’d much rather hear that he has not tested for 6 hours or that he tested high or low and was doing the right thing, as opposed to lying about testing or the results. He understands the need to care for himself and the importance of telling the truth, but emotionally, I think he is simply in a bad spot with D right now. I think he’d rather pretend it was not there and be like his friends.
We did ground him for the weekend, including not letting him go to a Halloween party. Our basis for this was his betrayal of our trust. We felt he needed a consequence and one that was swift and short in duration. He is dealing with the grounding well, except for missing the party. I feel for him, and selfishly I’ve thought of letting him go to the party so my wife and I can have an adult evening together, but I do not want to trivialize the lying. I guess I’m conflicted on that one. Our son has been dreaming up alternative punishments that we can use in exchange for letting him attend the party. So far none of them are practical or have him giving up anything of consequence.
I’ll offer my two cents. I understand your decision to punish him, however my thought is that his lying is not so much coming from wanting to get away with something or be deceitful. It’s coming from being overwhelmed with a disease that even adults frequently lack the coping skills to deal with. The lying is because he doesn’t know how to cope. 11-year olds don’t have a wealth of coping skills to pull out of their toolbox. I think it’s also critical to understand that to some extent, he was lying to try to prevent disappointing you and your wife. Coming to a parent and telling them your BG is 300 or telling them you didn’t test is just asking to be judged, asking to disappoint your parents. It’s like bringing home an F, but with the added burden of possibly doing it several times a day instead of just on report card day. I can’t even describe how painful and difficult it is to tell your parent you failed the “test” and see the look of frustration and disappointment. It’s a terrible burden on a child, and intolerable to the point that it hurts less to be a liar than be a failure.
If it were my kid, I’d revoke the punishment, and approach it as the mental health issue (being careful to not make it seem like counseling is just an alternative punishment) it is rather than the delinquent behavior it appears to be on the surface. I wouldn’t want to facilitate the development of resentment and anger at having this disease.
Every family certainly deals with things in their own ways, but I think consulting with a specialist about how to best manage this type of behavior so you don’t ultimately sabotage his relationship with his diabetes could serve you all well in the long run.
I hope that doesn’t sound disrespectful. Like I said, I really do understand your reasoning, but I think this situation is an anomaly relative to typical lying kid situations, so it needs to be handled as such.
Your son does understand the severity of the disease but he is fed up with it,he wants to forget about it may be the disease will disappear.I have this senario on daily basis when children start taking over the resposibilty of diabetes care.They need enforcement of positive attitude and no accusation,such a difficult time is adolescence.You can suggest to him group theray,diabetes camp,and referral to behavior therapist as an ally to help him contiue his care for himself.Best wishes Suzanne.
I have no idea what it is like to be an eleven year old diagnosed with D, but I do know what it is like to be recently diagnosed. I often fantasize that someone else would take responsibility for my D, and that I would be able to get some relief from the worry and stress of it all. Being independent also means being lonely, scared, taking responsibility, and feeling guilty if things go wrong.
I’m no expert, but here are a couple of suggestions:
Perhaps something you can do is use a “tag team” approach? If he’s feeling tired or overwhelmed, let him tag you guys in, and for a period you can take over until he feels ready to tackle it on his own again. It could also be helpful for him to watch how you guys handle high or low numbers (not getting too stressed out, coming up with a plan to get better numbers) so that he learns not to see the numbers as a judgement. If he’s high, offer to go for a walk with him. If he’s scared of night lows, offer to test him at 2am for a couple of nights.
Sohairs suggestion of a Diabetes camp sounds great. Imagine all the children your son will meet there. All having Diabetes and all having their struggles with it. Maybe he will not feel so alone anymore. Some will tell him that they have T1 since they are born and so he can see that life was even harder for some of them. At his age some will tell him - maybe with pride - that they are now taking responsibility. I was diagnosed with 17 and it comforted me that there were others with the same problems and feelings.
Hi Sizanne
You have gotten some excellent responses. The thing about being “lonely, scared and feling guilty if things go wrong” strikes a chord in me. If I may suggest (and i don’t know if you do or don’t) I wouldn’t “talk” about what he can ro can’t have when you all eat or go to a restaurant. I think asking him what he thinks may work for him. He may indeed want some foods that seem like a bad choice for him as a diabetic, but are foods that his friends eat. If you can, change a few ingredients at home to make it easier for him to eat it. Or you could include him in the plans for meals at home so he can have that piece of cake or a candy bar sometime or cookies or pizza. I would not make them as rewards, but as an item that was planned for if he wants it. He may indeed feel bad sometime during the night and really want some juice or a soda, but not understand what happens to his body if he is feeling bad from being too high. He will be forociously thirsty then too As a parent of two type 1 kids i was scared of making a mistake so badly that i overdid it in being too careful and not letting my kids have much breathing room. I don’t say this is what you are doing at all. This is just what i did and can see when i look back. Thank God my kids were older than your son when they became diabetic I think sometimes we have to step in and sometimes we have to step back a little. And i think help for Zach in the form of a group and help for you and your husband in the same way is a good idea. I wish so much I had done that or had that option with my kids. I wish you the best and will keep my prayers with you all. Please keep us posted. Truly we are all with you.
I feel for you. It is tough, but it is also tough on the little guy. He is just a kid, and from what I have heard this making up of numbers and lying about testing is fairly common. My daughter did it. Don’t hammer in the consequences of poor control - it really means nothing to an 11 year old that something bad could happen in years. At any rate, you don’t want him to feel even worse about having such a horrible disease. I instituted a temporary tight control of always verifying what she told me. After a while, I started letting go a bit when I figured she was in the habit of telling the truth. During this time whenever she wasn’t feeling well, I always wondered out loud if blood sugars could be to blame. She had lots of problems with headaches and upset tummy, and stomach pains. She gradually got the idea that if she wanted to feel better that maybe she should (try) to manage her diabetes better.
As an aside, once she went on the pump and got much better control, most of these problems did disappear even though we could never tie the two together before with testing.
