- advertisement -

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. virgo39

    virgo39 Approved members

    Joined:
    Jan 8, 2010
    Messages:
    1,691
    I'm not really sure how hearing the dumb things people say will really help with your mentoring.

    I try to keep in mind that, before dx, I did not have the slightest clue about diabetes...not really. I could mouth the terms " insulin dependent" and low blood sugar, but I had no real understanding. I think it is a little unfair if I were to hold others to the same standard that I would definitively fail, kwim? At first, I did get more annoyed and hurt, but now I try to look past inartful statements and see the intent, which in most cases, is well-meaning.

    The fact is, though, on any given day after dx, I might have reacted differently to people telling me they thought a cure was x years away, that things would get better, that they couldn't do it, that we would soon find a new normal...
     
    Last edited: Aug 20, 2012
  2. DadTheImpaler

    DadTheImpaler Approved members

    Joined:
    May 12, 2008
    Messages:
    25
    I don't really mind the "At least he doesn't have (insert disease here)", although I can't say anybody has ever said that to me. I've said it myself, when he's complained about being diabetic. We see so many horrible conditions when we take him for his regular visits to the Children's Hospital. As far as long-term diseases go, it could be a LOT worse, and I'm thankful for that. Easy for me to say, I know...
     
  3. DsMom

    DsMom Approved members

    Joined:
    Nov 9, 2010
    Messages:
    1,700
    The night my son was dx, my sister, who is also the mom of adult CWD, hugged me before we left for the hospital and said "You will be amazed at how strong he will be" (meaning my son). And she was so right. We went through a lot that night, with his first ever IV, BG check, and then his first shot the next day. It was all awful, but then he was fine 10 minutes later and having fun looking at the trains outside the hospital window and loving all the visitors coming with gifts. I should note that my son was not ill at all...we caught it fairly early, so he was completely himself and not feeling sick so...except for all the new medical stuff...he actually loved his "sleepover" at the hospital.

    Of course, for me...I was a wreck for weeks if not months.:( But that reminder of how adaptable kids are was really the best thing I heard at the time.
     
  4. DsMom

    DsMom Approved members

    Joined:
    Nov 9, 2010
    Messages:
    1,700
     
  5. DsMom

    DsMom Approved members

    Joined:
    Nov 9, 2010
    Messages:
    1,700
    Also, I think it is important to note here how individual these things are. You can see from the posts how something such as "you will find a new normal" gives some people comfort while it really irks others. Many people find that the "at least it's not _______ (fill in the blank with another disease)" puts things into perspective for some people, but enrages others.

    The best response for one person may be the worst for others. So you do really have to tread lightly. As others have mentioned, I think you can't go wrong with asking people what they need...and continuing to do so for months. Don't assume that, because they have mastered the basics and seem to be doing fine, that they ARE fine. It can take many months to get close to fine...parents of CWD don't just need support at dx....as you can see on this forum, we need varying levels of support throughout this whole journey.
     
  6. NomadIvy

    NomadIvy Approved members

    Joined:
    May 20, 2010
    Messages:
    1,130
    You can kick my dh on the behind... he keeps saying this and I have to keep shushing him. I absolutely hate it and I think it's still stupid...

    I still love him though :rolleyes:
     
  7. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    Yes, over six years ago when my dd was dx at 13 months, EVERYONE said that by the time she goes to school ther will be a cure!

    Started 2nd grade a month ago, did I miss it, is there a cure?

    Today while getting an oil change the younge man behind the counter was T1 and his mom is too. They are still waiting for a cure too.
     
  8. acjsmom

    acjsmom Approved members

    Joined:
    Oct 14, 2010
    Messages:
    62
    Worst for me: Well, just get her diet under control and she'll be fine. (said by more than one person)

    Seriously, did they even look at my then five and a half year old who was in about the 25th percentile for weight? My children were/are fed a pretty healthy diet and I would get that comment.

    Best: From her ped. at diagnosis: You did nothing to cause this. From her endo. at diagnosis: Perception is worse than reality. and This is a marathon and not a sprint.
     
  9. Jennifer126

    Jennifer126 Approved members

    Joined:
    Feb 1, 2013
    Messages:
    92
    Just the other day while I was worrying out loud I said I worry about the lack of stability in his numbers in these early days.... I said I was worried I was taking days off his life... a woman told me "oh, you are, but what can you do" Nice.
     
  10. bisous

    bisous Approved members

    Joined:
    May 21, 2007
    Messages:
    1,545
    Worst? Without question the complication stories. Particularly presented without context and requiring lengthy explanation to assuage little anxious ears!

    Best? For me it WAS the "Your child can do anything and be anything he wants to do. He will live a long and healthy life." It was actually paradigm changing for me and it has colored every aspect of our diabetes journey. This was said to ME though, and not DS (who was only 2 at diagnosis!)
     
  11. Tomdiorio

    Tomdiorio Approved members

    Joined:
    Jan 10, 2011
    Messages:
    75
    I agree with the others, something's said can enrage one parent and help others. I guess it depends on the person.

    For me, however, my son had bacterial meningitis at three months old. The next morning the infectious disease doctor came in and told my wife and I that "I didn't want to come in last night because I would have had to tell you he might not live through the night". Why would he even tell us that after the fact.

    Anyway, that sort of prepared me for anything the endo could have told me.
    Although...Ds was dxd at 10 months, the nurse educator told us "wow, we haven't had anyone here that young in 10 years".

    Again, I think it is different for everyone.
     
  12. shannong

    shannong Approved members

    Joined:
    Sep 15, 2012
    Messages:
    568
    Ditto to all of this!! Wow, how I hated hearing that "new normal" phase. Now I can say this - but I needed to come to that state of mind. I didn't need someone acting like frankly it was no big deal on the day he was diagnosed. I remember the nurse just acting all up-beat and saying that stuff about how he can do anything he wants. The whole time, I'm breaking apart inside and I felt like I had no right to cry, that my child had no right to cry. Really, what I wanted and needed to hear is, this is HARD, but you and your child will get through it.
     
  13. susanlindstrom16

    susanlindstrom16 Approved members

    Joined:
    Nov 29, 2012
    Messages:
    371
    On our second day in the hospital, when my daughter was in the ICU, the social worker from the endocrinologist's office came by to visit with a beautiful girl in her first year of college (probably about 18 years old) who had been diagnosed T1 at 16 months old. She talked to us for a while, showed us her pump, told us how her first year away at college living in the dorms was going. It made me feel so good to meet her and i often think about her when i start to get overwhelmed with things. My daughter can be just like her some day and that makes me happy.
     
  14. Momontherun

    Momontherun Approved members

    Joined:
    Nov 25, 2012
    Messages:
    103
    When you are overwhelmed and everything seems chaotic, plus you are worried about your kiddos future. I remember as a friend told me sincerely, diabetes is manageable and you can make it work. I hate diabetes but the fact I can manage if helps me to stay focused on learning what I need to manage it while letting my kid be a kid and learn in due time.

    This may be corny but everyday, I say, Praise god for insulin.
     
  15. Tomdiorio

    Tomdiorio Approved members

    Joined:
    Jan 10, 2011
    Messages:
    75
  16. Momontherun

    Momontherun Approved members

    Joined:
    Nov 25, 2012
    Messages:
    103
    Have you read Cheating Destiny: Living with Diabetes, America's Biggest Epidemic by James Hirsch? The book is from 2006 and is a book on the history of insulin and what it means to live with diabetes. It is a interesting read.
     
  17. Nana'sMom

    Nana'sMom New Member

    Joined:
    Feb 21, 2013
    Messages:
    2
    BEST
    Said to Me:"Are you depressed? Don't be. They (children) are stronger than you know. They are stronger than you." And,

    Said to My Child: After she was diagnosed, her endocrinologist made her list her favorite food, ticked off everything one by one, saying "Check!" for each food listed. Then at the end, he told her, "See, you can eat still eat all of your favorite food!" Then proceeded to explain to her that she only need to change some of the ingredients, eat at the right time, and limit the amount. My 7 year old was ecstatic!

    WORST
    Said to Me: Her teacher/adviser told me the first day she got back from DKA hospitalization (after diagnosis), "I saw her buying food at the canteen the week before she got hospitalized! She's been eating all sorts of food! So, I told her classmates never to share their food with Nana."
     
  18. shannong

    shannong Approved members

    Joined:
    Sep 15, 2012
    Messages:
    568
    The first week after my son's diagnosis, I was out walking the dog with a group of people who regularly meet at the same park. Turns out that a woman who I have seen almost every morning had Type 1 since she was 5 years old. I had no idea and it only came up when I told them about my son. She is in her 40's, a mother, and the picture of health. This totally changed my whole mind set about what the future will look like for my son. It would be nice if hospitals had some kind of program where we could meet adult Type 1's. When you read all about the scary long term consequences, it instills a certain fear in you. But after meeting healthy, adult Type 1's, I was filled with hope.
     
  19. mmgirls

    mmgirls Approved members

    Joined:
    Nov 28, 2008
    Messages:
    6,030
    My dd was dx'd at 13 months old and is now 8. Whenever there is a younge child/toddler dx's I will get a call to take the JDRF bag of hope to them while in the hospital, of course that means taking my dd along. This last winter the little girl was in kinder and her older sister was my dds age and it was a good experience for them to see my dd almost 7 years in and as normal as can be.

    The ability to see a pump and site and CGM on my dd help them put togeather in their mind what the tech was about. That is something that I wish I had when my dd was going on the pump, to see it on the kid not just in hand or on me.

    Everytime we meet a T1 I point it out to her, last time it was the Jiffy Lube guy and his mom too. For me it is most important to point out the women with T1 that have had families.

    Which brings me to the original tocpic of this thread.

    The worst thing said to me by a neighbor was that she would not be able to have a baby, he had a freind with diabetes that had multiple pregnacies that all ended in miscarrages that she finally had her tubes tied to not go thru the heartbreak abain that her body could make a baby but not bring it into the world because of her diabetes.
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice