I am new to this forum and am so happy I was able to find it! My 6-year-old son was diagnosed almost 2 months ago. We brought him to the ER where it was discovered he was in DKA. Overall, he has been such a trooper about all the pokes and the change in lifestyle. He is the only kid in his school with T1D, but his school nurse is amazing and we are in contact with each other daily. My son recently started to voice the emotions that he is feeling towards the disease. He said that he is embarrassed that he is the only one that has it, he is angry at diabetes (arenât we all, kid?!), and he is sad about having it. I am very grateful that he is able to tell me how he feels instead of holding it in. However, I am at a loss on how to help him. Does anyone have any tips about how I can help him work through the emotional pain, using words that a child understands?
Hi @AnnieStroh and welcome to the forum! Of course as with any medical condition there is nothing to be embarrassed about. There are a number off well-known people (although granted, perhaps not to someone so young) who live with it: Celebrities With Type 1 Diabetes
Iâm guessing you have already asked the school nurse if she could put you in touch with other parents - the wouldnât be able to share othersâ info due to Hipaa but if you request they share yours I see no reason why they wouldnât.
Another option would be to connect with other kids and parents at his appointments. Iâm also guessing that you have a pediatrician who is an endo and you could make all sorts of contacts and friends in the waiting room.
Itâs not too early to look at summer camps for kids with Type1 - hereâs a link to the American Diabetes Association list of camps - Find a Camp | ADA
The list is from 2023 but it will give you a starting point.
And finally, at the top of the JDRF page youâll find links to resources - you can search for in-person groups where you might connect with other parents and kids. National Diabetes Awareness Month 2022 - JDRF
hi @AnnieStroh Welcome to the forum.
I have to comment - 6 years old and he already has the language that evaded me for 20+ years while trying to accept my diagnosis - Iâm amazed. anyway there really is not much you can do to get him through this tough spot, because he will need to feel all the emotions coming up regarding all kinds of feelings. For me (diagnosed around 12), isolation, anger, being singled out, being punished for something I didnât do, I was also deeply angry that my parents could not fix this. They were able to fix everything before this and now, when it truly mattered, they let me down!. Honestly it took me years of therapy to be able to figure out my emotions and it wasnât until I was 30 that I could even get these things sorted.
great advice above but Iâd like to add that there are other organizations for Diabetes camps you can try, please consider looking up https://childrenwithdiabetes.com/diabetes-camps/ and also please try to get in touch with your local JDRF chapter https://www.jdrf.org/chapter-finder/
The idea is to eliminate isolation. He has to experience that there are many others like him gong through the exact same thing! Fundraisers are a way for you both to network, but camps will give him perspective and community.
Also, please take care of yourself - diabetes is new everything⌠new rules, lots of math, new language, new technology. Please consider reading the book âThink Like a Pancreasâ you can find it on amazon, it is filled with good information.
The active part of this community has well over a thousand years of Type 1 experience, please use the forum as part of your support system. .
The JDRF used to have a âBag of Hopeâ which is a kit for young kids recently diagnosed. There used to be a bear that came with it and you can have 3rd person conversations about the bear and taking care of diabetes.
https://www.jdrf.org/t1d-resources/newly-diagnosed/children/bag-of-hope/
@AnnieStroh Welcome Annie to the TypeOne Community Forum!
Much of what I envisioned writing has already been posted so Iâll only add my personal experience.
Accepting MY diabetes came solely beginning when I was 15 and although many, many times since then I would think that I had âconqueredâ, the âwhy meâ kept recurring i finally believe that Iâm fully embracing. I had never heard of diabetes when diagnosed and didnât know another person with diabetes until some years later, so âit was MY conditionâ and didnât share. As for school in the 1950s, from a suburb I traveled to Boston for HS where nobody knew that I had diabetes - I kept this MY secret. The only indicator to the school to give away my secret was the tardy note I had to present when arriving late for class mentioning that I had to stop at the hospital for a blood sugar test - a simple blood sugar test in those day had to be done at a hospital and took a couple of days to receive results. In retrospect, for his safety, I do not recommend keeping diabetes secret - and with The ADA [P.L. 101-336] job and employment discrimination has been minimized. After college, in January 1960 I was fired on my first day at work when the boss discovered that I have diabetes.
@Joe included a link to âJDRF Near Meâ, which you can also access by clicking the âEventsâ tab at top of this page; I strongly recommend that you take a look and try to engage. A JDRF Chapter may not be close by you, but many Chapters have sub-chapter groups widely spread. Nearby me is one of these smaller groups that hosts gathering coffee fort adults, and about every month has a weekend all day âeventâ such as a picnic, pool-party, game-day for younger kids to meet together and have fun. Diabetes will not stop your son from having fun and living a long and fulfilling life.
@AnnieStroh I couldnât agree more with all the others here and they seem to have covered it pretty well. The one rec I have is a donât, I.e. donât try to tell him itâs not bad or it doesnât suck, kids are smarter than given credit for, your son possibly more so from what heâs told you. So, let him talk, unless he says something vulgar or factually wrong, let him get it out. Then, and only you can be the judge of when, discuss it with him. What does he think is the right approach to handle it? How does he think is the right response to otherâs statements? Then you can help âguideâ him or provide/suggest alternatives with the reasoning why or how. If you donât have the responses, tell him so, let him know you may need to ask others that have dealt similarly and let us know the questions you need the help with, someone here is bound to have a good suggestionâŚmind you, we all donât have the answer, but one of us is bound to!
This may be a llongshot but - the challenges of finding a school with a nurse who is so supportive has come up occasionally in forum conversations. If you would be willing to post your city and state you might get âhitsâ from others in your area who would like to connect with you and have their child meet yours. Donât publish your contact info - anyone who accesses the forum can see it - but you could do private messages by clicking on their name. Of course the JDRF Resources tab is also an option but since youâre hereâŚ
Following up, please do not put any contact or personal information in the forum- anything put on this forum is public information and viewable to the world (the site allows anonymous views)
You can do a site search (magnifying glass icon at the top of this page) or go browse the âParentsâ Category because there is great information regarding school 504 and school EMHCP plans for public schools here.
Thank you all for your suggestions! We received the bag of hope from JDRF, which was excellent (my son has so much fun wit h Rufus and the app that comes with it.) We also scheduled an appointment with his âtherapistâ (part of his diabetes team). He is going to go to a diabetes camp next summer to meet others.
Many good suggestions here. As said the JDRF can help if you are in a city that is large enough that the JDRF may have an office within reasonable distance from you.
Things I might add: Donât control the disease as a parent. What I mean is give him info and knowledge along the way to help him understand the âhowsâ, âwhatsâ and âwhysâ of the treatment plan and daily routine.Building that foundation while he is young will help him become self sufficient in his teenage years.
Also, if he questions the daily routine and the necessity of it, explain to him what can happen if the disease is not taken care of. Be honest about it. Knowing the potential consequences of not maintaining could provide the incentive to keep at it, even when he may not want to.
Hi. Welcome to the group no one ever asks to join. My son was dx at 9 yrs old, he is now 13. I know he had some advantages as I also have t1d (for 38 yrs now). I try and follow his lead on how comfortable he is with telling others, and being discreet. Its not a secret to anyone, but hes not a loud and proud kind either.
I work at a school, and another t1d student was upset when i had to walk him to the nurse rather than recess. He was mad. I told him was allowed to feel that way. Its not fairâŚwhat is there to like about it? We talked about having these feelingsâŚand then i told him, hereâs the thingâŚyou need to feel those things and then move on. This is just something we deal with.
This isnt an easy road. There will be a roller coaster of emotions at times. We also make a lot of jokes about things like being high or whatever. Makes it more fun.
Hang in there!
Hi Annie,
Welcome! Iâm glad you found us! I was diagnosed at 2 1/2 years old, so a bit younger than your son. I was lucky that one of my uncles, plus a close family friend, had Type 1. Still, I was also the only kid with it. Thankfully, my mother explained to me in simple terms that part of my body (called the pancreas) didnât work and thatâs why I had to take insulin. She explained that if anyone asked (once I started school) that it was because of this that I got to eat snacks during school, etc. So, for me it became like show and tell. I actually enjoyed explaining to the other kids about my diabetes!
Instead of letting me feel that something was wrong with me, my mother instilled in me that this was not my fault. That no one knew why I got diabetes (I should point out that this was in the âdark agesâ of glass syringes and beef and pork insulin). It was a disease with no explanation, but it wasnât contagious, and I could do everything the other kids could do. I just had to take insulin and eat at the correct times.
I went to summer camp. First to a âday campâ (IE: not a sleepover camp) near my home and then to a sleepover camp for kids with diabetes. I didnât go to the sleep away camp until I was 11, but I wish I had gone sooner. At camp, we had campers as young as 5 years old. During the first week, they taught everyone how to give their own injections, including the 5 year olds! I couldnât believe it. My parents hadnât taught me until I was somewhere around 8 or 9. Of course, in that time we had gone from glass syringes to disposables, so perhaps they didnât trust me at 5 to load a glass syringe! 
Camp is absolutely wonderful. All of the campers and most of the staff have T1D. So, your son would see that he is definitely not the only one.
As for how he is feeling, my best advice is to let him know that T1D is not something to be ashamed of and if the kids at school are treating him differently, maybe they just need to learn what diabetes is and that itâs not contagious. Kids can get scared when dealing with something new, so his friends might be worried or afraid. So, I would tell him the best way to help them, and in turn himself, is to explain it to them. I would always tell others that my blood sugar got high because my pancreas didnât make enough insulin. So, now I have to take insulin to bring it down. If I take too much, my blood sugar goes too low and I have to eat. If I eat too much, or donât take enough my blood sugar goes too high. So, I have to try to keep it balanced. Thatâs why sometimes I have to eat, and sometimes I have to take more insulin.
Something like that, or even simpler terms like my pancreas doesnât work thatâs why I have to eat sometimes or take insulin. Talk to your son. Let him know he can explain it to his classmates so theyâll understand and wonât be afraid. In my opinion, this will help him feel more confident about having diabetes, because he will be in charge of who knows and how much they know.
Thatâs really the best advice I can give. Iâm sorry he is feeling this way and I hope he is doing okay. Youâre right, it is good that he feels he can talk to you about his feelings. That is great!
Pam K.
T1D 59.4 years and counting!
@pamcklein we were diagnosed at about the same time and nearly the same age (I was 3 at the time). I figure your next decade starts when the calendar turns to midnight on January 1st so let me be the first to wish you an early, happy diamond anniversary!
Pam @pamcklein, this is a most wonderfully told story, thank you so very much for sharing.
If you have âfree timeâ, you may want to make yourself available to schools and other groups in your area where issues have arisen around children with diabetes.
Thanks Dorie! The same to you! 
Dennis,
I work in the local schools and am very open about my diabetes. Thanks!
Pam