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Best & Worst things to say to parents of newly diganosed?

Discussion in 'Parents of Children with Type 1' started by cem, Aug 12, 2012.

  1. Knittingfor4

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    YES!
    Because when we left the hospital after 5 days with a 12m old, I hardly remembered anything. And they sent a huge bag of supplies, booklets, brochures. I have no idea where they went. I just wanted to know if my daughter would live to be my age! So, re-provide the tools, cause they may have just gotten lost in the blur. And tell them that life expectancy is only 4 yrs less than general population. And they will ride bikes, eat b-day cake, go to Disneyland - everything! This is what I needed to know.
     
  2. Beach bum

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    Best: That you are there for them, there are many of us out there who have already walked the path that they are walking and will be willing to give them support and share their knowledge.

    Worst: Look at it this way, there are worse things in life you could have gotten.

    I'm in the JDRF mentor program. One thing to remember is to tread lightly, I recall one parent who was so numb that they really didn't want to hear anything from me, so I left it at "you are going through a lot right now, and I understand, feel free to contact me any time."
     
  3. mom2Hanna

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    Among the things that stuck out was someone saying "well it could be worse". Well yeah, it could be worse, but for a newly dxd family, it's pretty bad.

    Best was when my sons former K teacher laid her hand on my arm and said it'll be ok, I was dxd when I was 7, I am very healthy, and Hanna will be too. I had known her at that point 8 yrs, we both had babies the yr she was my sons teacher and our girls were in school together, and I had no idea she had type 1. To see her in her 40s, with 2 good pregnancies under her belt, and with no complications took a huge weight off my shoulders.
     
  4. jilmarie

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    I agree with: "Nothing you did caused this to happen". I think it's also helpful to provide examples of people living completely normal lives with diabetes. Talk about your daughter and her interests and activities. Provide examples of others: Miss America, athletes, musicians, ect.
     
  5. Sarah Maddie's Mom

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    I wish someone had been there to say, "She'll be a happy, healthy kid. Yes, it's not easy, but you can do this, and she will be fine" :cwds:

    The worst for me was perhaps the silence of friends and family. Folks who sort of just ignored the magnitude of the change that we, as a family, had undergone. There were no, " So how are you? Tell me about how things are going" calls.
     
  6. MomofSweetOne

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    When the younger brother of a girl who had been in a kids' club with my daughter was diagnosed 7 months after my daughter, I called them as soon as I found out. At that point, the mom was so upbeat and told me they were finding "New Normal." She was so chipper and upbeat; I remember thinking "I am so not the person you should be talking to right now" because I wasn't in a good spot just then. I gave her book recommendations, etc., but I didn't say anything about the exhaustion, etc. Two weeks later, though, she called me and I could hear the exhaustion, both physical and emotional, in her voice the minute she said my name.

    The worst for me has been JDRF's telling us at their new diagnosis meeting that the artifical pancreas would be through the FDA and available on the market within 5 years and then to learn that such a thing is still YEARS away and that the Veo has been out in Europe for years without being available here. I am still really, really unhappy that they would basically lie to us when we were in a vulnerable year, still living each day hoping for a cure.

    At diagnosis, I was overwhelmed with gratitude for friends who weren't scared to have my daughter over. She went to birthday parties of close friends just three weeks after diagnosis: jump-house, pool, and my friend helped her with carb counting and dosing even with other kids all around. That meant more than I can express.
     
  7. blufickle

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    I think you should ask the parent what do they need.

    1) Do they need to hear how long it'll be before a cure if found? if that's the case, you have a big issue there since Richard has been juvenile onset (type 1) for over 60 years.
    2) Do they need to know how long people can live with diabetes? You can mention those of us here who have been living with juvenile onset (type 1) for over 40 years.
    3) Do they want to know if complications always go with juvenile onset (type 1)? I've had it for 47 years on the 17th of September and I have no complications.
    4) Do they want to know if every juvenile onset (type 1) have to use a pump in order to have good A1Cs. I still use a syringe and my last A1C was 6.3

    I think the worst thing for a parent of a juvenile onset (type 1) child who has other children is to treat the juvenile onset (type 1) differently than the child with diabetes. Yes the child with diabetes will need to be monitored more, but you have to treat your children the same as before diagnosis otherwise there can be issues.

    And also both parents NEED to be involved in everything to do with the treatment of the diabetes. That is an absolute. Even though my parents were drug using alcoholics (their drug and alcohol usage got worse after I'd been a diabetic for a few years) both of them knew how to fill my syringe and inject my insulin. Both of them knew how to test my urine. They both knew how much food I was suppose to eat at every meal.
     
  8. dzirbel

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    I like this idea. A list of websites (also a list of common acronyms), like this one, where you can find support. It would be nice to provide a simple "gift bag" other then the JDRF bag that has a scale, a calorie king book, also a book geared toward the age of the child, lists of resources and websites etc. If there is a local JDRF group or D group that has monthly support meetings, provide that in the bag with a phone number and time of the next meeting.

    I just remember being discharged with a pile of papers and heading to the pharmacy to pick up a pile of meds and supplies and then going home overwhelmed and having to clean out a cabinet to store the supplies. Then sifting through the advertisements we had gotten from drug companies and just filing it away because it was not useful info at the time...ended up throwing it all away later.
     
  9. cem

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    Thank you so much!

    I appreciate each response and I thank all of you for taking the time to respond.
     
  10. Mom2Will

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    I'm kind of late to chime in but what I NEEDED to hear:

    1. Going grocery shopping should not change one bit. I remember that first trip to the grocery store and wondering what exactly I needed to buy.

    2. That it would become much easier and that saddness was okay, that grieving was okay, that you aren't horrible for feeling so bad and that the majority of your friends and relatives will not think this diagnosis is a big deal and that they probably never will.

    3. A number to call of another parent to vent and ask advice if needed. (I was given information about group meetings, I wasn't ready for a big happy group of people. I wanted to grieve and wanted to do that with someone that understood and in private.)

    4. Christopher's list of books, invaluable library!

    I was given so much technical information and dietary literature I felt overwhelmed. I needed to hear the human side, I knew I had a great diabetes team to turn to for the technical side of things, I needed a real live parent to help guide me through and tell me I really wasn't going to lose my mind or my child.
     
  11. Turtle1605

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    I had a hospital staff person tell me, "The good thing is that he will never remember not having diabetes." That really hit me the wrong way...right in the gut. She probably meant well...but, it really just sent me into yet another emotional melt down.
     
  12. steph

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    Me too. I totaly get it, that she won't know what she's missing or won't know any different. But she did have a life before diabetes, and at that point it was all I knew. So don't say this. I can still see the face of the Dr that said this to me the night my daughter was diagnosed.

    I needed to know my daughter would be ok. That she would be a normal, healthy, happy kid who outlives me. I needed to know that i would be ok. That millions of parents have traveled this road before me and that I can do this and there are lots of people to help. I needed a moment to wallow in self pity. As helpful as the previous positive messages are, I also needed to hear someone else admit that this really sucks and it's not fair and it's ok to be upset about it.

    Don't say it could be worse or it's not that bad. Don't ask me when I'm going to get my child on a pump.
     
  13. Lee

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    Worst thing - definitely has to be that there will be a cure within 10 years - they have 4 years left and I have little faith now, although it did probably reassure me at first.

    Best thing - you will only be in control 50 to 75% of the time. I didn't believe it at first, I knew we would be perfect, but now, in reality, to know this statistic relieves a lot of guilt.
     
  14. MomofSweetOne

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    LOL. Someone (without D or a CWD) lectured me on needing to get my daughter a pump because it "gives the kids their life back." My daughter was 100% opposed to pumping at the time, and I remember telling her that our CDEs had said it is still stressful, just a different kind of stress.

    Pumping is such a personal choice. Switching to it when we did was a good move for us. I can't imagine trying to navigate puberty without the ability to rapidly change basal doses, but it is my daughter who is attached to the device 24/7 and she needed to be the one with the say.
     
  15. Tyggirl

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    Worst: "I'm so sorry. I could never handle doing all that." (From a family friend). Um, when the choice is doing "all that" or the death of your child it's an easy choice.
    "Well if she had to have it, at least you have it too and can be such a great roll model." Yeah, neither one of us is happy with the situation.
    "I've heard there could be a cure within 5 years!" Really? My mom was told the same thing 32 years ago.

    Well meaning, Worst: "She'll never remember it." As someone else pointed out not what you want to hear at that time.


    Best: "I'm hear for you when you are ready to ask questions."
    "It's never easy, but it does get easier."
     
  16. MomofSweetOne

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    Another worst: "I wouldn't want to give a shot either." (Upon telling someone my husband didn't want to do it that night while I was out.) Hmmm....do I?!!?!?!?!?? I normally don't react, but that night, I looked at the individual and said, "I don't want to, either, but I have the choice of that or picking out caskets." I will never forget the shocked look on his face.
     
  17. KatieSue

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    I think the worst for us was we were given the impression that once we sort of mastered the shots, testing etc it would all even out. Things would stabilize. My daughter lately said she thought the same thing so it wasn't just me. We'd get so stressed early on about numbers out of range. Of course you strive to be in range but no one told us that you wouldn't be in range - a lot of the time. You just do your best to fix it and muddle on. It would have saved us a lot of stress.

    Our other kind of issue was she was diagnosed at 13. And the programs, books, stuffed animals etc were geared to a younger crowd. She felt talked down to.

    Her biggest complaint was that no one told her about long term complications. I know why they didn't, they don't want to scare people. She did a report in 9th grade for health class on both types of diabetes and was so upset that no one mentioned to her the bad things that could happen.

    Best best best best thing was day two in the hospital one of the kids she knew from Polo was also Type 1. He came to visit her and he basically told her not to panic, it was a hassle but no big deal. Then proceeded to explain to her all the ways you can use diabetes to work the system, extra breaks, snacks in class etc. That made her feel so much better that someone she knew had it and was just fine. And there were maybe some small benefits to be had as well.

    We were lucky in that two other Polo kids were also T1 when she got diagnosed. So we had other parents and kids to talk to, get information from, see that you could do it. One of the other Mom's called them the Juicy Juice Brigade.
     
  18. mysweetwill

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  19. vanessa22

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    So many people say dumb and uneducated things in the begining and the worst by far was "oh well my father died from diabetes". Really? I needed to hear that..... I got a few "oh poor thing can never eat cake or ice cream again" and then my favorite "at least she doesn't have cancer". All insensitve and just plain dumb remarks.

    Anyway the best advice someone gave me was that as hard as it is in the beginning within a few weeks it will just seem so normal. A Dr compared testing/shots to brushing your teeth and it's true in a way. Also someone told me that after the first year things just get easier. For me, it was almost a year to the day I started to feel better. I worried a bit less and just stopped the constant negative feelings. It still hits me now and then but it's not an everyday occurance. I literally cried myself to sleep almost everynight.
     
  20. SFGingerBeerSoda

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    Best advice I received "Diabetes is a Marathon" This really helped me to stop focusing on one crummy number or awful day and start looking at the whole picture.

    Worst comments at the time: "she's so lucky to have you both as parents" Mostly because I felt responsible for passing on the genes and "I didn't sleep well last night either" lol, I still get irked with this one ;)

    Gwyn
     

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