BallerinaBraced Posted February 19, 2018 Share Posted February 19, 2018 Hi, I am 16 years old, and am homeschooled. My mom is a long term member of The Well Trained Mind, but we decided it would be best if I created my own profile to ask for your help. I have a four-curve scoliosis and am doing a project about having scoliosis. I am asking for personal stories, comments, and thoughts about having scoliosis or having a child with scoliosis which I am going to compile into a book and create a performance piece from. I would like to bring the performance piece to schools in order to help create a more supportive environment for young girls and boys with scoliosis. This is the link to the 15 minute survey: https://docs.google.com/forms/d/e/1FAIpQLSdc2KT_epp1JM-EC-iGmuhd4YdLo-E7Q9lrBIEqKl9L9n_8qA/viewform?usp=sf_link Any or all of the questions that someone is willing to answer is appreciated! If someone would prefer to email or call me rather than complete the survey, that is fine. If you are a parent and you would like to share your perspective of how you felt during the diagnosis and treatment of your child, that is really appreciated as well. Please forward this to anyone you know who might be interested in contributing. Thanks so much! Quote Link to comment Share on other sites More sharing options...
Tree Frog Posted February 19, 2018 Share Posted February 19, 2018 I don't know anyone with scoliosis, so won't take your survey. I can, however, bump this so it isn't buried. Good luck with your survey and performance! If you're comfortable sharing your performance, I'd love to see it when you're done. I've learned so much on these forums and here is yet another opportunity to learn! Quote Link to comment Share on other sites More sharing options...
BallerinaBraced Posted February 19, 2018 Author Share Posted February 19, 2018 Thanks so much! Does anyone else know where I might be able to post this to get more exposure? Thank you! Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted February 20, 2018 Share Posted February 20, 2018 Bumping for more exposure. Sent from my SM-G900T using Tapatalk Quote Link to comment Share on other sites More sharing options...
Lilaclady Posted February 20, 2018 Share Posted February 20, 2018 There is scoliosis group on Facebook you may want to check out and see if it’s ok to post on. I have a little one with new scoliosis diagnosis. Quote Link to comment Share on other sites More sharing options...
Lucy the Valiant Posted February 20, 2018 Share Posted February 20, 2018 No experience with scoliosis but when we were hunting for any info on a different (relatively rare) medical condition, our children's hospital was very helpful. (You've probably already thought of that, but I wanted to toss it out just in case. In our situation the condition went by different names, and the doctors used one name, while parents / kids / therapists used different terms; that was frustrating until we figured it out.) Best wishes! Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 20, 2018 Share Posted February 20, 2018 Giving you a bump. Quote Link to comment Share on other sites More sharing options...
almondbutterandjelly Posted February 20, 2018 Share Posted February 20, 2018 Gently, I don't know you. You say your mother frequents these boards, but you don't mention her name. The first page of your survey asks for name of my child, age of my child, and an email address, plus my name. I'm not comfortable giving a total stranger that information, so I don't even get far enough in your survey to respond to your questions. I would be happy to share our experience, but not with that kind of personal information. Best wishes. 3 Quote Link to comment Share on other sites More sharing options...
BallerinaBraced Posted February 20, 2018 Author Share Posted February 20, 2018 Hi perkybunch! I've included my personal information on the survey, and much to my mother's chagrin, you can google me and find some information about me. My mom would like to preserve the ability to post somewhat anonymously here, so we didn't include her name. She did, however, pm you so that you can see who she is. She can answer any questions you may have for her. We completely understand that some people would prefer to remain anonymous in the survey, and that is certainly an option. However, I did want to be able to further contact those who responded with information regarding the book and in case I had any questions. Since I am homeschooled, I don't have access to the same amount of people that I would if I attended a traditional bm high school, so I was reaching out to my "community" here. :) Quote Link to comment Share on other sites More sharing options...
almondbutterandjelly Posted February 20, 2018 Share Posted February 20, 2018 I got her pm. Thank you. Quote Link to comment Share on other sites More sharing options...
BallerinaBraced Posted February 20, 2018 Author Share Posted February 20, 2018 (edited) Hi, Dotwithaperiod. If you'd like to share your experiences through a private message, I would love to hear them. I personally know very few people who have scoliosis. I have found that there is very little information written from the perspective of and to those being diagnosed. Much of what I have found has been quite clinical and depressing. In contrast, I have met a few people who have been very supportive and uplifting in person. My hope is to give young people a positive message, as well as a genuine understanding of what scoliosis is like. I don't want a book to just be limited to my perspective but to include the experiences and lessons learned by many different people. If there is something I can do to make you feel more comfortable in sharing your stories and experiences, please let me know. Edited February 20, 2018 by BallerinaBraced Quote Link to comment Share on other sites More sharing options...
Liza Q Posted February 20, 2018 Share Posted February 20, 2018 My son has scoliosis. We can answer your questions anonymously and you can contact me via pm. Would you ask your Mom to pm me? Thanks. Quote Link to comment Share on other sites More sharing options...
BallerinaBraced Posted February 20, 2018 Author Share Posted February 20, 2018 Thanks so much! She is contacting you right now! Quote Link to comment Share on other sites More sharing options...
MotherGoose Posted February 20, 2018 Share Posted February 20, 2018 Have sent to a couple of people with minor scoliosis. Quote Link to comment Share on other sites More sharing options...
BallerinaBraced Posted February 20, 2018 Author Share Posted February 20, 2018 Thank you so much!! Quote Link to comment Share on other sites More sharing options...
SamanthaCarter Posted February 22, 2018 Share Posted February 22, 2018 I’ve responded with my own experiences. I might be a little outdated. [emoji12] Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
Frances Posted February 22, 2018 Share Posted February 22, 2018 I’ve responded with my own experiences. I might be a little outdated. [emoji12] Sent from my iPhone using Tapatalk Same here. Quote Link to comment Share on other sites More sharing options...
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