i think emily coles´ idea is excellent. the emotional isolation is killer in this. when i was diagnosed i complained about it to my mother and she said (brightly), "youll get used to it, soon it will be just like brushing your teeth!" i EXPLODED! it would have been much better to have her say that yes, it sucked big time.
Hey there! Sorry you/we have to go through this!! I like reading your posts because it gives me food for thought for when I get there with my child. But when Sophia (just turned 7 so a far cry from 14 I know) says "I hate having diabetes" I say "I hate that you have diabetes too. Everyone who has it wishes they didn't have it". I also tell her the EVERYBODY has SOMETHING. Some you can see with your eyes and some you can't. She has diabetes. Someone else may have cancer. A little girl in her class last year was autistic and Sophia liked to interact with her and talk to me about how she was different but couldn't help it. I tell her some kids don't have enough to eat or a mommy and daddy who love them and that can hurt more than taking care of diabetes. I just want to set the ground work for her that NO ONE is PERFECT. She also likes to talk about when she was diagnosed and how I cried at the doctor's office and how much I cried. I know it sounds weird but she wants the details of how many times a day I cried and how many days in a row I cried, and if I still cry.... I am very honest with her and I tell her all the answers to her questions like "I cried every day for 90 days at least!" and "I still cry about it every once in a while but when I do it makes me feel a better that I let it out". I think the camp sounds like a wonderful idea and I can't wait to be able to send Sophia. Maybe he could volunteer with kids that "have something". Even a big brother/big sister type club where he is helping someone less fortunate than he. Take care :)
that is awfully thoughtful gabby, if it is not to much trouble and you are willing to do so, i can ask him to watch! i honestly thought participating in tu would be good for him because he could participate as much or as little as he wanted and he would just be jacob in massachusets not jacob in science class! but he is really opposed to is and wants to trudge on pretending he is just like everyone else ( between boluses, pod changes, worrying about what he eats, getting low...you get it!)
emily that is an interesting idea, i ussually feel like i have to the the its ok cheerleader, he typically says i have no idea how it is because i do not have diabetes, of course he is right but as a parent i am right there with him and would gladly take it on myself. but maybe opening up to him more about the emotions i go through watching him struggle will help, i suspect he is in that selfish teen stage that he owns all the pain if you know what i mean, when he isnt being down about things he is a pretty empathenic kid and thoughtful of my feelings so maybe i will try a bit of that. thanks!
thanks all for your thoughts, after a tough week, really bad thursday night fueled by high blood sugars and a pod change, ? partial oclusion, he had been running better than ussual, it seems like we have a pump issue about one a month or so which is always challenging for him, death looks for mom! jacob was very affectionate and apalogetic last night, as he tends to be. i just think at 14 his coping skills arent quite there yet. at least he sees things correctly at the light of day, ussually! we talked about him having some friends over, he needs more social time and this will give him a chance to casually bring up his D where he feels safe. hoping for the best, so glad i have you all to bounce things off of, even putting it out there helps, hubby always thinks i have something do to with the drama and downward cycle of jacobs mood, maybe i do, the only thing that i can say works is stepping back and trying not to hover in that situation which i am still working on we have been though this before and he always come through with his genuine enthusiasm for things like his pets and his fish hobbiest obsession! better that than something else off to the store for a new angel fish this morning. thanks again all! amy
Sounds like you're doing great, Amy. Do consider my suggestion of hooking up with some other parents of Type 1 kids. If you get involved with JDRF family activities Jacob might end up following you one day. And since you like talking to people on here I'm sure it would really help you to talk with other parents who understand what you are going through.
I agree with that comment. I mean camp may be really beneficial but as a 10 year old child dealing with diabetes it was the LAST thing I would have wanted to do. It to me would have been just another reminder of being "different" and yes I know we are ALL different D or not. But I think if he could meet another D kid his age or a little older that wasn't in a group or camp setting, and was just a kid in REAL life he knew that was going through the same challenges and BS that is D, that might help. Also some people just do NOT want to be all that vocal about their D. I for one don't want to be. I don't want it to be a topic of conversation with all my co-workers anytime I go to eat something they don't deem "appropriate" for a D. Not realizing for ONE I am eating a small portion and for two I bolused for it, and for three NO ONE likes the food police. But that's what it turns into. I'd rather NOT have to deal with that. Im not advocating throwing control out the window and just go nuts and eat and do like everyone else, but I don't want to have to deal with that ALL the time either.
i agree zoe, just with the business of life, trying to get more of my yoga business going and all the kids stuff going on to seek support seems like an extra step that i am not sure i have time for, extra commitments can stress me out! i agree with you though it could be very benefical to meet "live" support,no offense! but i think that is why alot of folks appreciate tu it is right there at your finger tips, and so appreciated! blessings, amy
I understand, Amy, but you can't take care of other people if you don't take care of yourself. And it would also be modeling using support for D - saying that "going to share with other people who have similar issues" is a healthy and positive thing. When I went to that conference I saw many families there with kids Jacob's age. He might not follow you the first time you go, but after awhile being a part of JDRF (or whatever ) activities can become a family thing.
Yes, it is the same motive that leads us to seek out TuD, but there is still no comparison to live interaction with others in the same boat.Ok, I'll stop trying to convince you now..lol
Hello Amy, I read all the suggestions that you were given and most seem like good ones to try. I tried to put myself in your spot because at any given time I could be there too. My son was diagnosed a little over 3 years ago, a couple months before his 14th birthday. My reaction to it, after all the private crying was to learn all I could from books, some support groups but mostly Tudiabetes was pivotal to me. Having the latest info, peoples personal feedback, and getting best technology for him was my way of helping and dealing with it. The way he has coped with it so far has been very well considering all the responsibilities he has related to his pump and cgm. He doesn't mine the pod changes so much (we have been very happy with Omnipod), but we usually do it before bed when it not interrupting is daily priorities, and maybe too tired to care about it much. Changing the Dexcom sensor is more annoying to him, but we try to keep them on as long as we can, taping when needed then he usually takes around a three-day break in between. I don't harp on him much, he takes corrections when needed when his cgm alerts him (his has a pretty tight range for alerts). Because of the cgm, I have been more lax about counting carbs and weighing food (we take a educated guess), but I think that helps take some stress out it. Nathan has school-friends he eats lunch with that see him deal with D and answers questions if asked and is open about it but much rather talk about video games! There are 7 others with Type 1 at his school, one I thought he was getting close to, but this year she is not in any of his classes, I was a little sad because I know she's nice girl, her mom's a teacher too. He hasn't been involved with the others. He is a big home body and I wish he put himself more out there to build friends he could invite over. I too wanted him to join TuD, and he said he might a couple summers ago, he never did and because I haven't been much involved here for a while either so I haven't pursued it. Happened to log on in December to find out the Dexcom G4 was out, in one week we had it, thanks TuD. I know he would like the comradeship with other teens if they had some the same other interests. He has been to a 4-day D winter camp a couple months after diagnoses but it was a great experience because he roomed with jerks. He took a friend to a D surf camp once that was more fun. Now he is a little too old to be involved in those now. Support groups that we have been to manage D very differently than us so we lost interest.
Anyway, good luck, sound like he was just going thru and frustrated time, I worry about burnout a little, but so far so good with us. If you want to friend me and tell us what your son's other interests are maybe we could get them on to connect with each other. My best. Emily :)
P.S. Smaller pods soon! Hooray!
you've got a pulse on jacob there! and i agree sharing can lead to unwanted comments, people are sooooo ignorant at times, i think jacob just needs to get the word out only so it doesnt weight so heavy on him and to realize there probably will not be anything bad that comes out of sharing just a weight off his back, i think supporting someone with D should be recognizing their struggle with 0 judgement isnt this what we all want in life anyways! wishing it for you christy. amy
you know i always value your imput zoe and would love to teleport over to your neck of the woods and enjoy all your nature! enjoy your weekend! amy
You can have some of my leftover snow if you want, Amy; I'm tired of parking my car at the bottom of the hill and walking up! You have a great weekend as well!
thanks for your thoughtful reply emily. you were lucky that at 14 nathan was so responsible about his D, they say diag. during the teen years is the hardest and i would have to say there must be some truth to that. jacob was diag. at 10 still young enough be be under my wing, but old enough to understand everything. i think nathan and jacob have some similarities and suspect personality type plays into so much. with them both being basically introverted it takes the wild irresponsibility out of the equation and leads to i suspect a more compliant diabetic with more sense of personal responsiblity,along with the self conscious factor being higher! my thought if i joined a suport group as you suggest there would be a diverse group, diverse knowledge base, and sorry to say but a lot of noncomliant teens being discussed?? i feel that most people on tu because of their commitment to join and stick with online support are on the same page basically that is why i have "hung out" here so long. in anycase i would gladly friend you and maybe we can talk more about our boys! thanks again for the support! amy
I love snow!!and the exercise is good for you!! ( how often do you get snow?) we new englanders seem to think we own snow, not really the case we had a bit after christmas but almost all melted now, the aftereffects of snow are worse than no snow at all. hang in there!
I was wildly irresponsible when I was younger (literally, TONS of acidrock!) and, in some ways, it made me be more responsible with diabetes because I didn't want to kill everyone's buzz and wake up at the hospital still frying my brains out with BAC of .25 or whatever. I'm still missing part of my ear from an accident on a bike ride to go see the sun rise after one of those binges. I went to a support group the summer after freshman year of college and someone "fessed up" to having a fuzzy navel and said it made her pass out from hypoglycemia, which didn't square with my experiences.
I was a bit older than your kids when I was dx'ed (16) and was sort of relieved to get it squared away so I could get back in action. I'm wondering if he's 14, perhaps he doesn't need diabetes, but some sort of girl action [not trying to offend females but well, I vaguely recall being 14...] to get perked up? Not that you're not his favorite girl but well, you know? 14 can be sort of frustrating because you don't have a job, car, etc. that are sort of useful for establishing rapport in that realm at the same time you may be more aware of it than when you were 12? Diabetes is a huge drag but when I was 16, I was like "oh, ok, diabetes, thanks for the prescriptions" and went back to chasing girls around high school.
I love snow too. Sitting in my dome drinking cappuccino and watching the snow fall in the woods...lovely. Dragging groceries up an uneven icy hill...not so much..lol. But knowing I'm getting exercise is a good compensation. We usually get one good size storm in the winter and then just a couple inches here or there. This year our good sized storm was actually several medium storms every couple days for a week before Christmas. total accumulation about 2 feet.
I love New England...I think I've told you that before!
Hey acidrock, remember me, I hope so, extreme as your experiences have been, I think you are right in our case at least. I think a girlfriend would be a real boost for Nathan morale. He's a good looking kid, I think, but he just doesn't take risks to put himself out there. Maybe the girls these days can sense he's not the rebel type. I hate to say that was the kind I got involved with as a later teen, but that was cause I knew it would ■■■■ off my parents! Nathan doesn't have a problem with his home life and he has so much to offer. I tried to encourage him with the girl in his school that was type1, he got some "friend hugs" from her, but he said she had a boyfriend and this year she not in his classes. I think the only interaction they had this year is when his batteries died in his pump/meter and he found her to check on her meter so he could take a shot at lunch.
I have said the same thing to people about Nate, that he was dx'd young enough to take my instruction and old enough to understand why. As I learned new things, I was able to teach him. He now understands different factors that go into making a smart boluses. Yes, you are right, we are lucky that their personalities enable them manage their responsibilities well. He has never been sneaky with food, even when hungry and high, he knows he has alternatives. Yes the support groups and camps are diverse, most manage so differently, some dealing with highs higher that we normally see. The last meeting I went to even had the other extreme, the mom of a newly dx'd teen had her on a VERY low carb diet. She only needed a small basal shot. I debated with her a little, kindly wanting to learn more, but believing that I don't want my teen to be that different than other teens (he already eat 1/3 the carbs a normal teen already), I think that would lead to rebellion and resentment. He'll know that being more conservative with carbs makes D easier to predict, but that is decision he can make for himself.
Thanks for the add, talk to ya soon. Emily
When I was dx’ed, the rules were different, simpler, test 4x/day, eat exchanges so my parents were comfortable (or maybe not, but we didn’t talk about…) Saying “how’s it going?” rather than “tell us exactly what’s up!” like a lot of the D-parents I’ve run into online. In some ways, I figured out what to do with diabetes while I was uh, partying a lot. As a parent, I understand running the show for them, or at least supervising it but, as a D-person, I’ve been pretty happy running things, even when I screw up. My rebellion was (is) vs. Conservative social politics and grossly obese capitalism. I can fight them better when my BG is cool.