The Chronicle of the Horse
MagazineNewsHorse SportsHorse CareCOTH StoreVoicesThe Chronicle UntackedDirectoriesMarketplaceDates & Results
 
Results 1 to 14 of 14
  1. #1
    Join Date
    Jan. 7, 2007
    Location
    lexington, ky
    Posts
    1,056

    Default so sick of this any ideas to help me

    I have a9 year old daughter that has rett syndrome. Granted it's a mild caseand she's been having more good days, but it sucks big time when people say she's normal, there's nothing wrong with her, maybe it's her diet or you need to see a herboligist to cure her. I'm tired of explaining all of her struggles and everything we have tried to help her function. How cani politely get these people to back off without them offering more advice? I have told a few people they are welcome to take her for a few days and try their methods, plus i hope they have some good headache medicine for when she has her meltdowns lol



  2. #2
    Join Date
    Mar. 4, 2007
    Location
    Western Washington
    Posts
    2,920

    Default

    This cant be easy for you. Hugs ! Have you thought about not explaining yourself anymore? And then, "We're consulting with medical experts and while it isn't simple or easy, we're going to stick with that."


    1 members found this post helpful.

  3. #3
    Join Date
    Jul. 13, 2011
    Location
    East Longmeadow, MA
    Posts
    3,167

    Default

    Wow. Just googled this. I think you need to come up with something simple that you can learn to repeat easily, something along the lines of the above. This isn't something that most people have probably ever heard of, I know I hadn't. Hugs and good wishes to you and your girl.
    What's wrong with you?? Your cheese done slid off its cracker?!?!



  4. #4
    Join Date
    Aug. 12, 2010
    Location
    Westford, Massachusetts
    Posts
    3,463

    Default

    Don't be so polite? Start out as Stryder suggests, "Thank you for your concern, but we are working with qualified medical experts and have the information we need.". If they persists, drop polite and say "Look, our diet is none of your business". Don't worry so much about being polite...the folks pushing you aren't being polite.

    Everyone playing amateur dietician and armchair herbalist pisses me off too, and I'm not even dealing with a serious health issue like you are. It's the new religion...everyone proselytizing.

    Hang in there and lots of hugs!


    4 members found this post helpful.

  5. #5
    Join Date
    Feb. 5, 2002
    Posts
    1,977

    Default

    When it's about a horse, we say "thanks for the ideas, but we're on a program that's working for us." Sort of a "well, bless your heart" equivalent.

    Are there parent groups in your area that you can turn to for support? or maybe those are the source of the well-intentioned but crazy advice? Rett's is tough and I would imagine it might help to have friends who "get it."



  6. #6
    Join Date
    Jan. 17, 2008
    Location
    Dutchess County, New York
    Posts
    4,032

    Default

    I wouldn't even give a sentence of explanation, if I were feeling grumpy. I would just say "Thanks" and repeat that as many times as needed. Even if "thanks" is not an appropriate answer to the question being asked.

    "Have you looked into herbal medicine?" "Thanks"

    It still is polite while very clearly making the point.

    If I were less grumpy I'd give one of the answers suggested above.



  7. #7
    Join Date
    Feb. 14, 2012
    Location
    Fern Creek, KY
    Posts
    3,010

    Default

    Carry a mini squirt bottle and tell them 'ENOUGH' while enthusiastically unleashing cold water into their faces.

    My best friend's daughter has autism and she gets "helpful" advice like this all. the. time. She just smiles and says, "we got it", and leaves it at that. If they persists, she walks away.
    Quote Originally Posted by MistyBlue View Post
    I prefer them outside playing as opposed to standing in the barn aisle playing "I can crap more than you"
    New Year, New Blog... follow Willow and I here.


    1 members found this post helpful.

  8. #8
    Join Date
    Jan. 7, 2007
    Location
    lexington, ky
    Posts
    1,056

    Default

    Lol a squirt bottle would be funny especially the looks on their faces! Thanks everyone for the ideas. The recent people with suggestions is my boss's daughter and my supervisor. That's why i TRY to be nice about it. You should see the looks and hear what is said to me from the elderly. I don't look my age and they think i'm a teen mom with an unruly child lol



  9. #9
    Join Date
    Jun. 24, 2005
    Location
    Alabama
    Posts
    8,185

    Default

    People are so rude and nosy. I can't believe how snoopy and rude people are to offer unsolicited advice, or ask things that are none of their business.

    Don't use a squirt bottle, but a super soaker would be fun.
    You can't fix stupid-Ron White



  10. #10
    Join Date
    Jul. 20, 2010
    Location
    Texarkana, AR
    Posts
    1,535

    Default

    I can understand your fustration but maybe these folks realize how difficult your situation is and are just trying to offer something that might help. That's why I'd just smile and politely say we are working with her doctor on her treatment plan but I appreciate your concern.

    Hugs to you, it takes a special person to take care of a special needs child.


    3 members found this post helpful.

  11. #11
    Join Date
    Feb. 25, 2012
    Location
    Montana
    Posts
    2,244

    Default

    I like Styder's response - got a medical professional and we got this covered. thanks. Sure, people may not know what the situation is,w hich is why it would be great if they would find out before offering totally unsolicited advice.

    If I was crabby, i'd be tempted to ask if they have MD after their name and if they specialize in childhood neuro disorders. If they say yes I'd take their card, if they say no, I would be very confused as to why they were offering advice.

    Don't get me started on the ignorant whack jobs who talk about "curing ADHD with diet". Well intentioned, may be, but it would be like me offering treatment suggestions to a cardiologist. Just thinking about it is likely to lead me back to the forgiveness page...sigh.



  12. #12
    Join Date
    Apr. 17, 2002
    Location
    between the barn and the pond
    Posts
    14,193

    Default

    "I appreciate your concern. We're happy with our doctors and working with their plans. Thank you"

    Repeat the above ad nauseum. They DO mean well, they do care, and they just don't know HOW to say "wow. I'm sorry, this stinks, I wish she wasn't sick".


    3 members found this post helpful.

  13. #13
    Join Date
    Jun. 25, 2004
    Location
    Carolinas
    Posts
    4,572

    Default

    My off-the-wall suggestion is to have the main web written out and hand it to people. Let them know they can help by donating to find the cure.

    For less than $20 you can have business card printed via Vista Print. Hand them a card and leave.

    Many hugs, it so hard to see little ones struggle with illness.
    "Never do anything that you have to explain twice to the paramedics."
    Courtesy my cousin Tim


    1 members found this post helpful.

  14. #14
    Join Date
    Jan. 7, 2007
    Location
    lexington, ky
    Posts
    1,056

    Default

    That's a good idea about the donations. A few people have looked it up. Her teachers did research it so they know exactly what they are dealing with. I feel bad for her because people aee afraid of her because of her disability, so she doesn't have many play dates. I just hope she doesn't lose her ability to walk and talk



Similar Threads

  1. Sick sick sick! :( (Sinus? Flu? Plaugue?)
    By Threebars in forum Off Topic
    Replies: 14
    Last Post: Mar. 20, 2011, 08:34 PM
  2. Moderately sick horse...ideas?
    By CHT in forum Horse Care
    Replies: 10
    Last Post: Dec. 27, 2010, 07:36 PM
  3. Sick TWH
    By eeyore818 in forum Horse Care
    Replies: 11
    Last Post: Dec. 18, 2010, 02:29 PM
  4. Do I have a sick fox?
    By florida foxhunter in forum Hunting
    Replies: 10
    Last Post: Jun. 6, 2010, 03:30 PM
  5. Sick horse, vet is stumped, any ideas?
    By LauraKY in forum Horse Care
    Replies: 23
    Last Post: Feb. 23, 2010, 01:07 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  
randomness