My 17 year old son was dx at the age of 13 and has had problems with accepting his diagnosis and has let it affect the rest of his life in a very sad way. He has struggled a lot in Hugh school and is currently at home trying to finish online as he just couldn’t handle the pressure. He won’t try the pump or cgm and refuses getting help in the form of therapy. Has stopped playing sports and has very little social life. Has no interest in college or getting a job. We are working with a family therapist but he is not attending the meetings… Yet… What I really need is to know if this will get better or if we are on a downhill skid. Anyone have similar experiences?
I have a 16 year old son, diagnosed at age 15. It's been a year. Diagnosed in February. From all that I have heard, from all that I have read, it seems very common that age 17 is the "year" that is common for rebellion in this disease. I already see changes in my son as he seems to not want to take on the disease. They do this incredible thing and pretend that it is not there. I was thinking about it this morning, before I read your post. Perhaps a JDRF Mentor. Perhaps changing how he takes on Type 1? Modifying diet and exercise. Putting him in a place of control and "CHOICE". Because when it get down to it all it's only a matter of choice. And when he finds the power in choice instead of rebellion the slide of change will be in his court. I am working with my teen in modifying diet and reducing carbohydrate content so that his numbers are more steady and he see's that the changes that he makes has an impact on his choices. When we see what we can do that makes a change it helps for him to make the psychological changes.
Hi Peggy, I can't say that I am experiencing the same issue as my son was dx 2/2013 at 10 years old. But what I can share with you is his feeling of not wanted to deal with the disease. What I found that helped me was a family weekend trip to Camp Nejeda in Stillwater, NJ. This is a camp specifically for children with Type 1. My son Jayden found that he is not the only one and that EVERYONE was like him. The camp has children from the age of 7 -18 and ALL of the counselors were campers. I don't know where you live or if there is a camp near you but it's working. He keeps in contact with the counselor that was assigned to us for the weekend and now he is looking forward to attending this summer. Good luck.
Hi Peggy -
First I am so sorry that you are going through this - and that your son is isolating himself on all levels....it is so tough on everyone!!
I agree with Xman's Mom that being around other teens with type one is a very healing and eye opening experience. At 17 you still have control over him - a good thing! I recommend that you attend to the Children With Diabetes Friends for Life Conference in Orlando - this conference s for families with T1D kids - all family members attend - both D and non-D kids. Thousands attend -tons of teenagers!! and awesome fantastic role models. As well the parent community at the conference - presentations and connectivity- just can't be beat for those of us with Kids with T1D. The teens are all together - and even those who are super resistant and have isolated them themselves end up having a complete blast with their new buddies at Disney World! Check it out at www.childrenwithdiabetes.com .
I also have a recommendation for a RN/MSW/CDE who specializes in helping T1D kids and their families - please message me privately for this information if you want it.
If you want to have a live phone conversation with me I am happy to do that - again, message me privately- sometimes it is so helpful to be able to speak to someone who knows what you are talking about!!
I have been at this D game a long time - almost 18 years - I am so happy to be of help if I can - don't hesitate to reach out to me!
hi peggy, so sorry for your stuggles... I think being diag as a teen is really the hardest age, my son was diag at 10 now 15 I think he had a few years to settle in and learn the ropes before becoming a teen plus his personality 'fits' for compliance... my technique as a parent esp in the last year or two it to try try try not to hover and let him own this, I complement him on all of his accomplishments even with that he will still say that I only talk to him about his D.... at 17 i am not so convinced on the camp idea my son never ever wanted that experience nor has he wanted to share or support anyone else with D he does what he needs to do about his D but after that he just wants to be a normal kid... so at this age it really has to be all his call, but with his extreme withdrawal I would be worried and maybe even think about an antidepressant?? my son was very closed mouthed about his D in middle school and he struggled a lot with insecurity, being different, worrying about people seeing him bolus. since starting a new high school all his friends know and he does his own thing at school with his D only going to the nurse in an emergency. since his friends see him with diabetes and like him anyways a big weight has been lifted from his shoulders. did your son have this type of personality before diabetes? I really think your son needs some counseling I am sure you feel the same way, I hope he will agree to this. he should be past the 'mourning' period with dealing with his D. until he accepts this as part of his reality he will stay stuck. and there are soooo many worse things to deal with. he needs to find some sort of hobby, joy, freedom outside of diabetes and run with it. That being said it is said to be a challenging time for teens with D, I just think a fantastic counselor may be able to help. many blessings, amy
I'm 38 and have had diabetes type 1 since I was 4 years old. I'd just say this: DEXCOM Rocks! This CGM is way cool! It is my GPS before paddling into double over head waves.. knowing I'll be addicted out here and stay longer then I always plan. Having it at 130 and rising with arrow up is peace of mind before moving into some intense exercise. Look.. I know type 1's are all different to a degree and so I'll always suggest you talk to Dr before taking my advise.. Hear me out.. Diabetes can be brutal if you let it. My folks were fairly flexible with me when I was young. I competed in distant racing in the ocean in dangerous conditions. It was the best thing for me as a diabetic. I'm not in your shoes so all I can say is you are not in his too. And Dexcom is all about convenience and helping simplify our lives. Being anal about testing and all that stuff will burn him out! He as you know needs to assume his role in caring about it. At 18 I didn't care either or at least I tried to not show it as a boy (maybe a male thing??) But if one wants to rip it on a perfect wave Dexcom is the answer for many.
Dexcom puts me on top of my game and somewhere within each of us we know that we have a great duty to win in life, inspire, progress, get out of our comfort zone and be a champion. Its what everyone deserves from us so be on top of it. My CGM and my pump allow me to do that in a way that helps me focus on life and becoming a better person with so much less distractions before. Gosh 5 years ago.. I had to wonder and waist mental energy because I never knew exactly where I was. WOW what a difference with my CGM. No excuses anymore today in keeping levels good enough. Technology is awesome!
Our world or our reality as we see it is arbitrary: IF you felt diabetes was a gift for your son would your body language be different? Look I wanted to add that I think being diabetic is totally cool! It forces me to be a better person and forces me to hold habits that apply to success in business. Your son may not know it.. but he may come to realize this gift and use it for his advantage. He's got a great story to write. We need to hear it so I hope he gets going with it! ummm sorry cant help you there...
great advise ethan, and awesome attitude, exactly how we would like our children to live with diabetes as adults!! peggy, I do think if your son did convert to a pump he may feel more free and confident, my son loves his omnipod because it is discrete he would not consider another... he will at least feel more comfortable in social situations bolusing with a few buttons rather than a needle. just this could make a world of difference in his confidence level. as much as you and he would like this to it will not go away so he needs to find a way to live with it, has he considered looking at this site or others he may like seeing how others deal with their D without actually going to a meeting or camp????
Does he know anyone else who has T1D? I think this may need peer-to-peer intervention. I do know that my 7-year-old is comfortable with his diabetes in part because he knows so many other people with it — there's a kid in his big brother's class, and another kid at the dojo, and one of the instructors at the dojo, and the mother of a kid who takes swimming lessons with them... So for my son, having seen other people whip out their pumps or meters all the time, it's really no big deal.
Elizabeth, that is great that eric has so many 'role models' with type 1 plus being diag so young he knows no other way, I somehow think this is much easier on the kids not so much the parents trying a treat an active toddler with type 1 I wouldn't wish that on anyone, life is always that balance and we can drive ourselves nuts with what ifs, we can so be our worst enemy when we fight against our reality as opposed to bending with it and accepting what we can not change. I hope all is going well with eric the mighty, I just made this up but it seems to suit him. hugs, amy
A little more history… After dx we did go to friends for life and met great people. My husband and I and our older daughter all had a great time… My son barely tolerated it… Then we tried the Omnipod and he wore it with saline for a few days and decided he didn’t like it… A few months ago we tried a cgm but the insertion site freaked him out… Tried antidepressants, counseling… I just talked to a great JDRF peer counselor today but my son won’t talk to anyone… We are working on a plan with a family counselor… I’m completely stressed out and worried… We are trying everything but my son just wants to avoid the issue… He checks and boluses all,the time… Wish he’s try the pump again but he says no… I can’t figure it out… Hoping he comes around… Great kid, kind, smart, good looking, athletic but just giving up… Ugh hardest thing for a parent to go through… And harder for him…
Would live to get the info on the nurse. We went to friends for life right after the dx. It was great but my son didn’t really engage… Had other tyoem1 kids at school talk to him but he doesn’t want to talk about it… Very complicated case but we won’t give up… He has to find something he loves and not let diabetes stop,him…
My son never wanted to go to camp before or after dx… He’s not one to want to be a part of a community because of his dx although my husband and I have made many friends twitch other who are parents of type one kids… I would give anything for my son to be one of those resilient kids who don’t let it stop him…
Very inspiring Ethan… Hope,my son has your attitude some day!
sounds like all you can do is stand by him and support every accomplishment he makes and encourage any social time ,does he have anyone his age he hangs out with? just hanging out and having fun may take the edge off. at least he is doing his diabetes care and not totally denying it, my son has a young man in his high school diag as an early teen and will not even do an injection himself. I feel your pain, continue to stand strong and model good coping skills. also try to make time for yourself and do things that you make you feel happy, try not to let this consume you and your son may also see how you live your life and find happiness and decide to do the same. blessings, amy
Thanks, this is also the advice the therapist told us and we are doing that the best we can… Also getting him out as much as we can… Games, trips etc… He has lots of options and I think part of this is just being stubborn…
My daughter is almost 16, diagnosed at 11. I also have 2 adult children who struggled with chronic health issues. There is nothing more painful for me as a mom than watching my one of my kids struggle, & feeling powerless to help. What you’re describing sounds like more than rebellion. In this situation, I would be taking Barbi up on her generous offer. I would also get the dr/endo/other medical providers on board & ask for more help. Antidepressants may be useful, but getting to the root of the problem & having someone help him learn how to face his diagnosis should be the goal. If he hasn’t seen a counselor who specializes in dealing with chronic health issues, finding one would be my mission.
You say he checks & takes his insulin, so he isn’t totally ignoring things. That’s a very positive sign.
Hi Peggy - You are doing everything you can!! Hang in there - I wish I could be of more help!! Barbi oxoxxo
My son was diagnosed at 15 at the beginning of his sophomore year at a new high school. He was very secretive about his diagnosis and did not go out with friends at all the first year. He would just not eat at class room parties or field trips rather than excuse himself to test and bolus. He stayed on the hockey team but would only test before games and then drink Gatorade on the bench if he felt low; he would not test on the bench in front of his teammates.
He eventually developed a small group of close friends that were at our house constantly where snacks for everyone were available in proportioned sizes with carb counts on the packages and breakfast milk was poured into plastic cups for everyone that only my son knew held exactly 16 oz. Water, Diet drinks and regular drinks were available. When he started to drive and eat out fast food with his friends, he would test in the car. He did not date at all until the Summer after graduation. He did not go to his Prom; He did go with a girl friend who had transferred to another school and needed a date. We were sad for him to miss out on so many things his older brother had done at the high school because of his fear.
But, the good news is after two years away at college, he is much less secretive about his diabetes. He continued to date the underclassman for a year and played catch up on some of the high school activities - Homecoming Dance, etc.He has met some people with diabetes on campus. He plays college hockey and tests in the locker room between periods. He found a part time job through friends where the manager was very positive about his ability to manage such a serious disease away from home. He even did most of his Freshman speeches on diabetes and the greatest invention - the insulin pump and the upcoming bionic pancreas. He may even volunteer at the Diabetes Camp this Summer which he never had any interest in attending. He also never had any interest in going to counseling. We have been pretty amazed at the turnaround as he has matured.
I hope your son gets better but it is hard when they have dug in and won't try anything new. You might try a college visit to a nearby school. At our visit we were going to the trash can to dispose of a soda can and looked down and saw test strips at the base of the trash can. My son and I just grinned at each other - most visitors that day had no idea what those little strips were but we did!