I have another question for you all. My son is 9, diagnosed in May. He’s overall not bothered by anything about this new change, in terms of shots, etc- he doesn’t seem anxious (like we are), or sad. He doesn’t love not being able to eat whatever he wants but he’s not bad about it. However, now that he’s started school he is hating and resisting being different from the other kids, having any special accommodations- going to the office for shots, he sulks, etc. The bigger problem is that although he is allowed to have water by him and get snacks whenever and knows this, he isn’t doing it- because he thinks its “not fair” to the other kids. The teachers, even the principal have tried to help him see that it is fair, but he dislikes it. He also turned off his CGM alerts one day because I guess he’s embarrased? He was high, not low so not a huge deal, but still he is not taking great care of himself at school. I know its all new, he’s very young - but any advice on how to help him want to help himself?
@bonetje hi again Sarah, I was 12 when I was diagnosed. I was mortified that I was different. At that age, all I wanted to do was fit in and not be a spectacle. Wearing a CGM (in my 12 year old head, at that time in my life) would have been equivalent of wearing a flashing yellow light on my head and a T Shirt that had the word “Freak” on it.
It will take time. It takes a lot for a 9 year old to wrap their head around the concept of “Chronic disease”. It will take a long time to not think he was bad and being punished, it will take a long time to forgive you - you have fixed all of his problems so far in his life and now, when it is most important, you tell him there’s nothing you can do? same for doctors, same for any concept of religion and higher power, and singularly the most important thing, him being on par with his peers and those he aspires to be like.
The grieving process for his loss of good health will be just that, a process. It is very much like all loss, it is emotionally traumatic. This will not come overnight nor will you be able to give him a speech and have him snap out of it.
it took me many years to develop a feeling of peace with this disease. for me, therapy would have helped because I remained in an untreated depression for decades.
Eventually and with gentile guidance from you. He will be able to completely take care of himself. In the meantime, if he wants to rip off that CGM I suggest (sorry if this is hard to hear) that you let him. having a tiny bit of control in this may be of great importance to him right now.
I survived on crappy beef/port insulin and no blood sugar meter, let alone a CGM so it is possible.
Please consider working with maybe a therapist in the near future, or participate in a JDRF fundraiser so he will meet others and know he is not alone.
There are diabetes camps as well, you’ll have to search them but at these camps, having diabetes is the normal.
your job in the near future is not easy, but you can do it. we’re rooting for you both!
Hey there. I’m Julia. I was diagnosed with Type 1 Diabetes at 10 years old. I am now 23. I completely understand the feelings he is experiencing. Even though he has every right to be “treated differently” as far as being allowed snacks in class and whatnot, that kind of attention can definitely be embarrassing.
I know everyone’s experience and solutions are different, but here’s what I did and still do to deal with these feelings of embarrassment. When it came to school, I always kept my snacks or juiceboxes to treat lows in in my locker. That way if I needed to treat a low, I could just go to my locker real quick and eat or drink something real fast.
As far as the CGM, I always turn my alert tone to “vibrate” so that it doesn’t alert anyone else except me.
I also would recommend looking into an insulin pump at some point since this really eliminates a lot of having to go to the office to get shots and such since you can basically do it from anywhere.
As time goes on though, everything will become so normal that none of this will matter. And your son will realize this quickly. Honestly as the years went by in school I would just start checking my blood sugars and giving myself shots at my locker or in the lunch room. I know I know, this wasn’t what I was supposed to be doing but once you know how your diabetes works and how you work as a person, going to the office to get a diabetes shot just seems stupid.
I guess I’m not trying to tell you to have your son break school rules, but that soon all of this will be so normal that people realizing he is diabetic won’t even phase him.
Good luck!