Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 hi, my name is a mum of a very smart 8 yo child with Rss, he s of course shorter then the other kids but not that much , the slim figure and tiny face is what make him stand out but anyway he s such a great personality that some bigger children would dream of, I m just wondering somentimes.... how i can tell him about this RSS, infact i didn t mention nothing jet, we r going to the endo once a year and he think is a cool hospital because the numbers of playstations they have!He is not in Gh and not going to have any .... my question for you is this : as an aduld now how and when would you have like this conversation to have take place...looking back to your childhood did it make a difference when they told you? did it make you feel better knowing what you had? I hope you have the general feeling of what I wanted to ask you, sorry for my spelling.. I m an italian living in London. All the best MOnica ______________________________________________________________________ Yahoo! Mail: 6MB di spazio gratuito, 30MB per i tuoi allegati, l'antivirus, il filtro Anti-spam http://it.yahoo.com/mail_it/foot/?http://it.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Hi ! Don't worry about how you wrote your message...you are perfectly understandable! > as an aduld now how and when would you have > like this conversation to have take place... > looking back to your childhood did it make a > difference when they told you? did it make you > feel better knowing what you had? I wasn't diagnosed with RSS until I was 15 years old, so by that time I understood everything the doctors said, since I was a smart kid and they were explaining it in layman's terms (explaining it so a non-medical person could understand it better). For me, then and now, it was a good thing to know because it put the pieces all together (my height, my appetite, how I looked when I was a baby, reaching physicial developmental milestones later, etc.). But until then, I don't think there was ever a " let's sit down and have a talk about your being so short, " that I can recall. As my height came up in my life (when clothes didn't fit right, when kids teased me, etc.), I was " reminded " that I was little, but I honestly don't remember it ever being a big thing to me...I guess because I was ALWAYS little, it was normal to me, I could do everything I wanted to do, and I couldn't SEE how tiny I was in comparison to my peers (still can't ) so it wasn't something I thought about a whole lot. Obviously, it was a bigger deal for my parents, but from the kid's point of view, it really wasn't. I know that my parents DID focus more on my strengths and made sure to give me a good sense of self-worth and self-esteem...and maybe that's why my height (NOT one of my stengths ) wasn't such a big issue for me...I was being taught to focus on the positive things in my life. -Sharon- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 , I was diagnosed at fourteen months at s Hopkins University in Baltimore. I had been born quite premature and up until this point all of the medical experts my parents took me to assured them that my lack of growth and size was due to the fact that I was a preemie and had three surgeries during the first year or so of my life. As soon as my parents got the diagnosis they joined Little People of America (LPA) (nothing like MAGIC existed at that time) in an effort to learn everything they could about short stature in general and RSS specifically. I was lucky in the respect that I more or less grew up in LPA and had many fantastic short statured adults as role models. I was always aware of the fact that I was smaller than all of the other kids, but was never really curious about why until I was in first grade or so. My parents were always very up front with me. They didn't sugar coat anything, but they weren't brutal either. They told me that I was smaller because I had RSS and that I probably wouldn't be as tall as my peer when I grew up but that that did not mean that my life would be diminished in any way. Because of my contact with other short statured individuals growing up, I got to see other short statured women leading really normal, productive lives. My best advice to you is to be very honest with your son, even though that's sometimes very painful and very hard. He'll be better off for hearing the truth from someone he loves, trusts and respects (i.e. you). Secondly, I would strongly suggest that you find some successful, happy short statured individuals that you can use as an example for him and to drive home your point that while he may be shorter than average when he grows up, he is still capable of EVERY SINGLE THING that his average heighted peers do and are. Let me know if you have any follow-up questions and good luck with your son! ~Hillary 21, RSS 4'1 " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 Laurie, Yes, I do feel incredibly blessed that my parents embraced my short statured identity from the very beginning and taught me that short is beautiful! LPA was certainly a wondeful resource for me growing up (and still continues to be to this day) and I'm glad you found the organization, albeit a little bit later in life than some of us . Best Wishes, Hillary Quote Link to comment Share on other sites More sharing options...
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