Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 I would like some advice as to how to explain what is happening to my six year old. I dont' understand it enough myself so I'm at a loss for words. Any thoughts? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 > I would like some advice as to how to explain what is happening to my six year old. I dont' understand it enough myself so I'm at a loss for words. > Any thoughts? , Joyce again. I see you probably experienced the very same thing my parents and I did 27 yrs ago. My parents decided not to tell me what was up until I broke my mom down with my constant questions at the age of 14. That was an extremely long time to believe that I had done something to make my mom sad, and my dad angry. A long time to believe the kids at school when they called me names and made fun of me. A long time to believe I was " lazy " , " chubs " and " slow-poke " as my father called me, even though he knew there was a disease causing all this in me. I didn't know it was all about a disease, and that I was not at fault. Even when my mom told me, she got the name right, but the origin of it was wrong, and I think she probably made up some things that she couldn't remember from the appointment 7 years before. And to this day, we don't talk about it except when I bring it up because of some trouble I'm having at the time. I still am extremely anxious about it when I do say something to the family about me and CMT, even though 4 of the 6 of us HAS it! So I guess I'm so glad you asked the question! I am definitely an advocate of the truth, to the best of your knowlege. And get the knowlege. This site is a great reference, althought it can be scary too to learn of all the things people can experience with CMT. The big thing is we're all still human, we do exist and we do thrive on life, just like everyone else on this planet-trial and error! Your daughter knows she is " different " . What has she talked to you about? Has she asked why she's been to the hospital? Start with her questions and comments and let them lead you. Just be supportive, open, and honest. Find out all you can, and share it with her as she gets older and the info is more age appropriate. Let it become a continuous process, not just one " life altering " talk. Encourage her to talk about it with you, and whoever else is important to her so it becomes as natural as talking about wearing glasses or preferring a yellow coat as opposed to a red one.(Whatever, just try to keep comfortable with her). It doesn't have to be a big deal, just another part of being who you both are. Again, just my opinion. I don't have any children of my own, but I was a child once, and I wish my parents had done it this way. And I am still shocked that the support process hasn't progressed in the past 27 years! I must encourage you to ASK for ANYTHING that you can dream of to assist you and your daughter in the way of medical " care " - -support groups, private counseling, website info,...just ASK. You never know what's available until you do! Best wishes! Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 hi, i just wanted to say that i too believe that honesty is best. explain in a way that she might understand that she is not really different but special. that even though there are things she can't do or can't do well there are other things she does very well maybe even better than most. most people fear the unknown, and if she knows that there will be changes she will be looking for them and it wont frighten her as much as if one day it just happened. of course you would need to take in concideration the age of any one that you talk to about these things. ok i'm not very good at putting my thoughts into words but i hope i explained it atleast ok lol. i am just up front with my son about what is going on, that he is special and he may have trouble doing certain things and that it's alright. it's not his fault. he's determined and i let him know that is ok too. i tell him he'll never know if he can do something or can't do something if he doesn't try atleast once and if he can't do it he'll find something else he can do and he'll be ok. i hope this helps. i know it's not the greatest writing work, but i'm tired and i'm trying. renee --- Benzo <kwilson@...> wrote: > I would like some advice as to how to explain what > is happening to my six year old. I dont' understand > it enough myself so I'm at a loss for words. > > Any thoughts? > > > Quote Link to comment Share on other sites More sharing options...
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