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the emotional side of it- newly diagnosed

Discussion in 'Parents of Children with Type 1' started by mysweetwill, Dec 14, 2011.

  1. mysweetwill

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    My son was diagnosed on 11/10/11 and is 10 yrs old.

    Like Sassy, Im finding it difficult to navigate the parties. Thankfully we have a full time school nurse who handles the school portion, I email her his snack and lunch carbs every morning and she handles his bg checks and injections. The school scheduled a 504 within 1 week of his diagnosis and has been very supportive. For the upcoming parties, I will send in something he can eat and he and the nurse can calculate his insulin for that snack and add if there is something else at the party he'd like.

    My concern is the emotional side of it, the kids are asking Will why he is going to the nurse, he is not comfortable telling anyone yet. We recently moved to this town and he has no history with these kids and is concerned about their reaction.

    He has friends with severe allergies and celiac and i know he "knows" that kids will still be his friend, but he just isn't ready to discuss it yet. His child life specialist at our endo's office told him that is his perogative, and that like his phone number, you dont give it out to just anybody. So in that regard, for birthday parties and situations outside of school, since he is not giving his own injections yet, how can I handle this? A mom's presence alone at birthday parties for kid's this age is a red flag to other kids.

    He will likely be getting a pump in the next month or so, he is happy about the flexibility but concerned that it will now be "obvious" he has diabetes. He has told his closest friend, who watched him test himself and get an injection, was like "ok now lets go outside!" It went a long way in terms of Will's acceptance of it, and I was hoping he'd see that kids are curious, but once they know, they will stop asking...

    How did your children deal with "telling" people? I certainly am not pushing him to tell anybody, but at some point through the other parents or somehow, kids will ask him about it.

    Sorry for the rambling....
     
  2. Sarah Maddie's Mom

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    Hi and welcome. :cwds:

    My child was much younger at dx, so our experience was very different, but I did have a few thoughts ....

    Has your son met any other D kids? It might be worth looking into the Barton weekend camps ( they also run a summer camp) they are in MA. To meet an older boy, one who is coping well with his D might be a good thing.;)

    I would also talk openly with him about the importance of not being ashamed. It's hard, and it may take time, but in the end you will want the adults at least, in his world, to be aware of his medical situation and too, it really helps when our kids can be open with their friends and can ever look to them to be there to help out in the event of lows.

    Does your endo offer any support groups? Are you at Yale?
     
  3. ashtensmom

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    My daughter was a few months shy of 8 years old when she was diagnosed. While in the hospital, one of the endos (not hers) mentioned to her that one of the Jonas Brothers has T1D (she's not really into the Jonas brothers but know who they are). As well, he listed a few other famous people with T1D... Mary Tyler Moore (for sure our kids don't know her, LOL!) Kevin Kline's son, etc. etc.
    Also we (at the time) had a neighbor (14 years old) who has had T1 since he was 2 years old. I don't know if all of this affected her acceptance of it but I believe it did somewhat. She is very open to it, and in her first week back at school she brought in a children's book about T1D and read it to her classmates. She tests her BG right at her desk and for the first few months, every time she did a BG check, she picks a classmate to stand beside her to watch. It got silly actually were friends where wishing they had diabetes because of all the attention she was receiving. I was going to her school everyday at lunch to help and oversee her BG checks and her friends were envious that her mom was there everyday. We have held off the talk about the long term complications (for obvious reasons) so to her diabetes is no more than the "inconvenience" of checking BG and the restriction on food. We were talking about the hopes of a cure one day, and to our surprise she said that she wasn't wishing for a cure because she likes having diabetes!!! Of course, her tone has changed many times and there are days that she sings a different tune. Now that we are pumping, there are days that she cries and fusses about site changes and hating her life because she has to wait 10 to 15 minutes before eating, etc. We try our best to stay positive about "D" in her presence and I keep my crying behind closed doors (yes, I still cry and mourn the lost of our carefree lives and her new reality).

    Are there other kids that you know with D? I think it is very helpful to expose them to other kids going through the same.
     
  4. spamid

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    Sorry you had to join us, but welcome. We had a group of kids who got together once a month when my DD was first diagosed. It went a long way towards her being comfortable, but it was only this year as a freshman in high school that she is willing to check in the classroom. I'm glad you aren't pushing your son until he is ready, he can definitely choose who he tells.
     
  5. Sassy

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    Hi Rhooker, welcome and feel free to ramble! :) I'm sorry you're having to go through this as well. My son has been accepting of his diabetes and just wants to do what he has to do and go on with life. Before he went back to school I asked him, "are you going to tell your friends or do you want to wait"? He said he wanted to tell them. His first day back to school was last Thursday. He told his friends at before school care and also his classmates. They were very receptive and understanding. In fact, Christopher is saying they are really looking out for him and he's made even more friends. He doesn't like the sympothy part of it, but on the same token as a parent, I think it good that they are aware of his condition in case something were to go wrong.

    The good thing is, you're not pushing him. You're letting him do things on his own terms and on his own time. He'll do it soon enough when he's ready.
     
  6. Christopher

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    Welcome. I think a lot of this will be resolved with time. It takes time to settle into your new lifestyle. Every child has their own feelings about how public they want to be and at his age it is important to respect that. You can work with him on a simple sentence to say when kids ask him why he is going to the nurse.

    As for outside activities and parties, I found the more upfront planning I could do the better. Talking to the parents of the child having the birthday party and figuring out what food is being served and the timing of it helped a lot. Maybe you don't need to stay the entire time? You bring him to the party, you stick around and "socialize" with the parent until it is time for the food, then you and your son discreetly go into another room, he gets his shot and then you leave. That is just one way it can be handled. You can't worry about "red flags" with the other kids. Life is not as simple as it once was and there are things you have to do that other parents don't have to do. That is just the reality of it. And honestly, once the "newness" of it wears off for the other kids, it is not a big deal to them at all. But I think the real solution here is....time.
     
  7. mysweetwill

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    Thanks everyone.

    I agree, meeting some other kids with Type 1 would help.

    There are no other kids with diabetes in his school and maybe three in town, but they are in high school. Our local JDRF has some events with kids, but nothing is scheduled right now.
    We go to Naomi Berrie Diabetes Center in NY and they have a great team, including the child life specialist, but no kids support groups as far as I'm aware.

    And yes, we have heard of Barton and plan to take part in some of the events there, but again, there is nothing in the immediate future scheduled. I've tried to hook him up with other kids via email on the JDRF site, to no avail. I'll just keep looking and trying...

    I truly hope that you are right, Chris, that in time he will come to terms with it all and feel comfortaelse with some friends knowing. He is at that age now where he does not want to be different in any way. He is doing great with his carb counting and injections, he just hates the interruptions at school and hates the lows he experiences after sports, gyms that we are still trying to manage.
    Again, thank you for all your kind support.
    Rosemarie
     
  8. Becky Stevens mom

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    Hi Rosemarie, my son Steven is 10 also:) Well, almost 11, in March he will be. And we are in CT too but probably on the other side if youre going to NY for endo,we go to Hartford. Steven was diagnosed very young, he was 3 so he really doesnt know any different. He's alway been comfortable about his diabetes and has had the same friends since pre-school. His friends think that its pretty cool, especially sticking his fingers and making them bleed. They like to watch that:cool: We've had JDRF walks for the past couple years and a rep has come out and talked to the whole school about type 1 diabetes. She gives them alot of info that can be understood by kids of any age. She always asks Steven and the other CWD in the school if they want to come up. They always do, this year STeven walked up looking like a prize fighter:)

    Can you find out if there are other kids in the school with type 1? Steven was the only one for the first 4 years that he went there so he was a real maverick. If there are others maybe the nurse or a rep from JDRF or an endos office could come out and do a presentation about type 1. I think he'll grow to be more comfortable about it as time goes on.

    Does he know that Jay Cutler (quarterback for the Chicago Bears) also has type 1? And Charlie Kimball (NASCAR driver) And Nick Jonas, and Brett Michaels (lead singer for the band Poison) and Chris Dudley (pro basketball player) and Gary Hall jr (gold medalist in summer Olympics for swimming) and Sean Busby (championship snowboarder) and Will Hewitt (ironman triathlete) There are many others, but you get the idea. Tell your son that he is in the company of some really great people who dont let type 1 dictate what they will accomplish in life.

    My son Steven gives Jay Cutler football cards to anyone in CWD that wants one. If you'd like one for your son, PM me your address and we'll get one sent right out:cwds:
     
  9. Christopher

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    And schools are not allowed to disclose that type of information anyway.
     
  10. danielsmom

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    Hi Rhooker,

    Welcome....my son Daniel 11 was diagnosed last July, he was 10...I spoke to many people/friends and family during that time...and so the moms of two of his best friends knew....their first play session together they watched as Daniel checked himself and got a shot, but it was like no "big deal", they just wanted to play lol..I"m sure their moms had already mentioned something, but we were open to questions and Daniel was not and has never been embarassed of being checked or getting his shots in public.. He started a new school that year. He did know a few kids from sports, but he was new.. I didn't know what to expect..His teacher spoke to him and asked if it was okay that she explain to the class what he had and what it was about. He was fine with it..He has his buddy that walks him to the nurse everyday...Other than that it has never been an issue.. No kid has made fun. To me I think that they were told upfront was a good idea...not all parents or children may want that.. But once they knew it was like "whatever" lol...kids are kids...Daniel has thrived in that school, made many friends...gotten involved in the clubs, running for president(5th grade)...just finished his soccer season with his team taking 1st place....and his looking to his "junk" food party this Friday(I"m not lol)...We don't have a full time nurse unfortunately.. so I will be taking off early to see what he plans on feasting on and bolusing him as best I can...As open as he is about his illness, one thing is that Daniel doesn't like to talk about it..He deals with it, but rather not get into conversations with me about it, nor does he ask questions..... For now his care is in my hands and little by little he will get more involved in his care...Just take it one day at a time..
     
  11. Sassy

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    We asked our nurse if she would ask the parents of another student of type 1 if their child and mine could meet. The nurse asked and the parents were so happy that their daughter could have another person at the school to relate to. Their daughter was diagnosed 2 months ago. Needless to say, Christopher made a new friend and they both are very comforted in the fact that they're going through this together at school.
     
  12. Melba

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    ((hugs)) to you both.

    Freya has always been upfront about her diabetes. Her school mates were curious at the beginning but are now used to it and accept the comings and goings of the nurses. No-one has ever been negative about it.

    Hopefully your son will soon feel more at ease with it all - I know Freya is more accepting of it than I probably am!
     
  13. Christopher

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    About a year after Danielle was dx she came home after school all excited and ran up to me and said "Dad, I have great news! Another girl in my school was dx with diabetes! Isn't that great?" I had to kind of smile internally and let her know that while it will be nice for her to have someone else to relate to, the little girl is probably having a hard time right now. She assured me she would help her "work through it". It was cute and sad.
     
    Last edited: Dec 14, 2011
  14. MomofSweetOne

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    We were given the opposite advice in the hospital. The recommendation was to tell her friends about it in a large group (or class). That way the information was given to everyone all at once and would prevent rumors that would be worse than reality.

    It was summertime, so we invited her friends over. They played outside for 1.5 hours, just like always. We then had snack, during which we explained carb-counting, shots, etc. They asked questions...and then when others had questions at other times, she wasn't alone in answering them. She was glad we'd done it, even though she wasn't sure she wanted it at the time.
     
  15. jbmom1b2g

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    My DD was just dx in June she will be 8 end of Jan. She has taken to diabetes like no other. She lets everyone know she has it. We will be in the grocery store and she will walk up to a complete stranger and say I have diabetes. But all kids are different. When my BIL was dx he didnt tell anyone. He was dx at 12. We did read a book to the class. I havent had to worry about class parties cause they dont have any due to a girl with SEVERE peanut allergies. About a week ago I did ask my DD how she felt about diabetes and she said she was happy cause she got rufus. And he is her best friend,
     
  16. mysweetwill

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    Well, I guess my son is in the minority in that he is not a proud diabetic ready to shout it from the rooftops! I really think its a combination of his age, his gender, and his personality. Thankfully, the other women in town I met who has a 15 yr old who was diagnosed in second grade is also very private about it and only tells close friends. My son's child life specialist, by the way, was saying that like his phone number, he doesn't have to share it with everyone he meets. I may have not been clear.

    I do believe when he chooses to tell some of his friends he will feel a bit relieved, but again, this is something he will do on his own time line.
     
  17. Christopher

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    I don't think he is in the minority. He is very newly dx and he will deal with it in whatever way makes him comfortable. There are so many factors, age at dx, personality, etc. And also, his feelings may go back and forth over time. I have seen that. I think you are handling it perfectly, letting him move at his own pace. There is no right or wrong way to handle this.
     
  18. obtainedmist

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    When Molly was dx'd at 18, she still had a very hard time with doing any injection in front of anyone other than her close friends. She was extremely concerned about what others thought. Pumping with the Ping really did help her in that way. No one really questioned her pump (she kept in it her pocket like a cell phone). She would test and dose from the Ping (glucometer that communicated with the pump) and felt it was much more discreet. A year and a half later, she just whips that thing out and does what she needs to do whenever, wherever. Will your school system allow him to dose himself, or does he need to go to the nurse whenever?

    Time will really help.
     
  19. Becky Stevens mom

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    I agree with Chris. This is a tough age for kids. Just beginning puberty with all those issues of self awareness and being comfortable in their own skin and that fear of being "different" As I mentioned earlier, my son was just a pre-schooler when he was diagnosed. He does not remember life before diabetes and therefore only knows this life of being tested before eating and getting an insulin shot before he eats.

    Right now your son is trying to let this all sink in and figure out what the changes will mean to him. If people are asking why he leaves the room each day at lunch he could just say that he needs to use the bathroom then or something along those lines. I think you are being very respectful of his feelings about this and in his own time he will get more comfortable about sharing this info with friends
     
  20. KatieSue

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    Every kid is different. Mine is very open and could care less if anyone stares. She was diagnosed at 13 and I worried but all her friends were more fascinated by it than anything.

    When she was diagnosed there were two other kids on the Polo team that were also Type 1. (3 out of 10 kids in Polo were T1). One of the boys is fairly open about it if asked but he's fairly private about testing and such. The other is very private and I never saw him test or bolus once. I spoke with his parents about various issues but he never said a word.

    Each kid handles it their own way and I'm sure in time your Son will find the way that's most comfortable for him. I'm glad you're not pushing him in any direction, I'm sure that will make him feel more comfortable overall.
     

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