No announcement yet.

Totally Off Topic -

  • Filter
  • Time
  • Show
Clear All
new posts

  • Totally Off Topic -

    Background - my 9 year old has a super rare chromosome disorder. Maybe about 250 cases documented worldwide. She’s a doll but has a complex medical history, has special needs (delays), and low immune system (similar to immune compromised).

    Our 13 year old niece decided to do a school
    prohect about my DD. Didn’t ask us or my DD. Just asked me randomly for a picture of DD and then a day before her presentation asks to interview us to get more ‘details’ about DD. My DH took the call and was surprised. But it didn’t seem to bother him.

    i guess the presentation went well. We never saw it. My SIL posted a note from her teacher that said great job for being such a caring person to your cousin (my DD). My SIL shared it on Facebook with the caption ‘My DD did a presentation about her special needs cousin and her medical issues’ and basically bragging about her DD and how caring she is.

    Here’s the thing. She tagged me (which I I tagged myself), named my daughter by name, AND they have like NO relationship with my DD. They send gifts and cards, but we see them maybe once every 2 years. It really annoyed me. I don’t share anything about DD health condition on Facebook since it’s her journey you know? Plus, if I want someone to know, then they already know. I don’t need to share it on social media. It also really bothers me because i feel thar it’s treating my DD as their feel good charity or their mascot to tote around because they want people to know how caring they are. I guess the part that bothered me the most is that I don’t want anyone to feel sorry for my DD. She’s her own little person and can do everything, just in her own way, if that makes sense? She’s a petite thing, but she’s still is paving her own path, she doesn’t need pity.

    Do I say anything to SIL about how that was insensitive? My DH thinks it was done to share awareness and the 13 year old didn’t think about how it could be hurtful, but shouldn’t the parents know better? I also think at 13, you DO know better: I’m torn and thinking just let it go and not say anything since we won’t see them again until
    prob next year

  • #2
    Oh hell no! This hits home in so many ways for me! This is SO WRONG of them! It was NOT done to bring awareness. If the cousin hadn’t had a school assignment, it wouldn’t have been done. And then to post your private business, by NAME? I am livid for you.

    I don’t have any social media, so I don’t know how I’d handle that part. But, in the interest of keeping peace and getting a little snark in (won’t say which motivates me more here) maybe I’d reply “I had no idea Janie cared so much!! My Susie would love to spend time with her. Let’s set up a regular get together so Janie can help her!”


    • #3
      Wow! I'm always amazed when people do these kinds of things. I'd like to think that since they're your family, they had the best of intentions but - in my opinion - they went about it all wrong. Your niece may have assumed that since she asked your husband questions about your dd's disorder for her presentation that that was enough permission to go ahead with the project?? Maybe your sil assumed her dd explained everything to your husband and that because you provided your niece with a picture that you were ok with a social media posting?? I don't know....maybe being a child care provider has made me more sensitive to this kind of thing but I can't imagine posting the picture of anyone else's child on any social media site without express permission from the parent, never mind provide their name and information on a medical condition they have.

      My own sil posted pictures of my 2 kids on her Facebook page when they were minors. I called her and asked her to please take them down and not to post pictures of them on social media without permission again. As their mother, I don't post their pictures because I think they're the only ones who should get to make that decision. On sites where I'm anonymous and it pertains to the discussion, I have mentioned that my son has Asperger's Syndrome or that my daughter has Chronic Lyme Disease and I've given details about both but only with their permission and because we're relatively anonymous.

      If it were me, I would speak with sil and explain your feelings on the matter. I'd be afraid if she did it once, she could do it again since remaining silent about it now kind of implies that you're ok with it.


      • PB&J
        PB&J commented
        Editing a comment
        This is a calm and measured response! The only thing I would add/comment on, is that if I were the SIL, I would have asked my daughter “are you SURE you have Auntie’s permission to personalize this medical condition and use your cousin’s name and picture?” But it’s that same sense of privacy that keeps me off social media, so it may not have occurred to SIL.

      • e.j.
        e.j. commented
        Editing a comment
        PBJ, to be honest, I laughed when I saw your reply because my initial reaction was the same as yours - "Oh, HELL No!" My response was calm and measured only because it wasn't my kid who was involved. ;-)

    • #4
      One why would a teacher give this type of assignment and two what business is it of theirs what happens with your daughter especially if they only see you every two years!
      Christy Sewell


      • #5
        100% both the parents and their child should have asked you. The adults should know that it is inappropriate to share personal medical information on social media about a minor!
        i would be livid. Definitely say something. You appreciate they want to spread awareness, but they should have asked for permission before sharing someones medical info.


        • #6
          I should edit and say I UNtagged myself from the post.

          my guess is the assignment was to talk about a time you were caring.

          my DD has a chromosome disorder. It’s not genetic, it’s a spontaneous disorder that is rare. Raising awareness for something Like that is ridiculous because realistically, you won’t meet another person with it in your lifetime.

          I think the part that bothered me the most was that it was intended as a brag at the expense of my daughter. My SIL used the words ‘all her medical problems’. That was what had me fuming.

          I told my husband how I felt and he thinks it was not done maliciously. I’m going to save the peace, but I’m glad we’re skipping Xmas with their family this year and I’m going to make sure I don’t disclose any info next time they ask ‘how’s DD?’ My answer will be ‘good, and yours?’ Followed by ‘why do you ask?’ Being a daycare provider has given me plenty of practice on how to make people uncomfortable when they ask dumb or super personal questions ha ha!!

          you know what’s worse? If this truly was done with a good heart, they would’ve talked to my DD about it and they missed that opportunity. A moment in her world through how she views it is magical


          • PB&J
            PB&J commented
            Editing a comment
            I don’t think it was malicious either. But it was definitely self-aggrandizing (on the SIL’s part anyway), and that’s not a quality characteristic either. Maybe it was a way for your niece to express an interest or caring, without knowing how to follow through since she doesn’t see you that often. Otherwise….for her essay on a moment of caring, the ONLY thing she could come up with was…something she doesn’t actually show caring for. Very sad for her and her upbringing. I understand that sounds harsh, but a huge part of my own parenting was volunteering and teaching my kids to care for others; I think that should be part of raising good citizens. At 13, I would hope she had at least one example of true caring. Maybe reach out to her and ask her if she would like to learn more?