Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 , You'll do great. When we did Braydon's show-and-tell presentations (that word sounds much more formal than the actual event, but you know) we didn't say scoliosis. We talked about him having back surgery, and that his back was curved, and that his back needs more surgery to stay healthy, etc - just like you've suggested. Scoliosis means nothing to most people, and its such a broad/generic term anyway. Does Olivia have a 504 plan? If not, I STRONGLY suggest you get one. It is a FEDERAL law that all public schools must provide equal education for anyone with physical needs. This helped so much. Every teacher, counselor, school nurse, and administrator who would ever be in contact with her during the school day needs to attend this meeting. We used to do 504 mtgs without Braydon there, but the last one we did, Braydon came to the meeting. The teachers were able to ask HIM what he thinks would be helpful in their classroom - ie, if he needs to have a desk on the BACK row of the class, near the door, for an early out; if he would prefer sitting in the front of the class; if he needs a pillow on the back of his chair; if he needs to stand at the back of the room to stretch his back during lecture times; if he needs to kneel instead of sit cross-legged in the back of the group during story time; what would be a good code for using the bathroom; etc. Because HE made those choices, he felt more confident and more in control of something about his body. We also showed the 504 group his xrays. For Braydon, this was a good thing. A 504 plan only works well when the administration and teachers are fully supportive of it. Hopefully your school understands how they work and what kids need to have a successful and positive experience in school. Good luck. If I think of anything else, I'll let you know. Everyone else has had great ideas too. Good work everyone. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ ________________________________________________________________________________\ ____ Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 , You'll do great. When we did Braydon's show-and-tell presentations (that word sounds much more formal than the actual event, but you know) we didn't say scoliosis. We talked about him having back surgery, and that his back was curved, and that his back needs more surgery to stay healthy, etc - just like you've suggested. Scoliosis means nothing to most people, and its such a broad/generic term anyway. Does Olivia have a 504 plan? If not, I STRONGLY suggest you get one. It is a FEDERAL law that all public schools must provide equal education for anyone with physical needs. This helped so much. Every teacher, counselor, school nurse, and administrator who would ever be in contact with her during the school day needs to attend this meeting. We used to do 504 mtgs without Braydon there, but the last one we did, Braydon came to the meeting. The teachers were able to ask HIM what he thinks would be helpful in their classroom - ie, if he needs to have a desk on the BACK row of the class, near the door, for an early out; if he would prefer sitting in the front of the class; if he needs a pillow on the back of his chair; if he needs to stand at the back of the room to stretch his back during lecture times; if he needs to kneel instead of sit cross-legged in the back of the group during story time; what would be a good code for using the bathroom; etc. Because HE made those choices, he felt more confident and more in control of something about his body. We also showed the 504 group his xrays. For Braydon, this was a good thing. A 504 plan only works well when the administration and teachers are fully supportive of it. Hopefully your school understands how they work and what kids need to have a successful and positive experience in school. Good luck. If I think of anything else, I'll let you know. Everyone else has had great ideas too. Good work everyone. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ ________________________________________________________________________________\ ____ Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Gail! I love ya girl!! I got this really great mental picture of us all gruffed up ready to kick some 4th grade booty!!! I needed that laugh! How have you been? Haven't seen you much on the group. I see every day. Picture is still by my computer. Give her a hug for us. Maybe we could just send in to straighten everyone out. She says some very profound things for a girl her age! Olivia is at a totally new school, not that place she was last year. I know will do well. Can you send me the link to the pics. I missed it. shellie Gail Kimball wrote: , You know I really have to wonder about that school! You are doing the right thing - I know Liv just wants to be Olivia, and not " that girl with scoliosis " and I am totally behind her on that! It pisses me off when kids are so thoughtless and that they haven't been taught to have some character and instead of being obnoxious, they should be friendly. Of course, considering what you have told us in the past about that school I don't think the teachers have either. I know Olivia will hold her head high and deal with it, but she shouldn't have to. I don't think you are wrong in talking to her teacher at least, but the teacher shouldn't make a big deal about it either if it isn't warranted. I am sending big hugs and prayers that the staff in that school wise up or Shellie and I may have to come with our steel toed books and kick some academic butts into shape! Love ya, Gail and heather@... wrote: Here we again! Olivia started school yesterday, and already she is running into problems. Prior, to her starting school this year, she informed me that she did NOT want me to talk to the class about her situation. She wants to be known as Olivia, not Olivia with scoliosis. While I respect her feelings on this 100%, I came to the conclusion that this approach was not a good one. Olivia has no special needs, and you can barely even tell that she suffers from scoliosis. My issue is, if we dont inform the children of her back issues, they may not be sensitive to her very minimal needs. Which would be not to knock her down, or hit her back. Thats it. I fear that by not discussing these 2 issues with the children, I am not only doing a disservice to Olivia, but also the other children. Imagine, that one of them accidentaly knocked her down causing the rods to dislodge or break her ribs......Not only would Olivia feel horrible, but the child responsible would also be devistated.....So, I made the decision last night, that I would talk to her classmates on Thurs. I mentioned this to her teachers this a.m., and apparently one of them discussed this briefly with the class this a.m. Right after the discussion, some little boy in the class stated that Olivia walks funny and that she sticks her butt out when she walks! (his exact words) Anyway, I am on my way to her class again in a few minutes to discuss this with the teachers. This needs to be addressed immediately, so things dont spiral out of control. Thanks for listening. I needed to vent! Please share with me any ideas that you may have on how to properly handle this. This is all new to me and I want to deal with this appropriately. Thanks for any input. Trying not to overreact... HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Gail! I love ya girl!! I got this really great mental picture of us all gruffed up ready to kick some 4th grade booty!!! I needed that laugh! How have you been? Haven't seen you much on the group. I see every day. Picture is still by my computer. Give her a hug for us. Maybe we could just send in to straighten everyone out. She says some very profound things for a girl her age! Olivia is at a totally new school, not that place she was last year. I know will do well. Can you send me the link to the pics. I missed it. shellie Gail Kimball wrote: , You know I really have to wonder about that school! You are doing the right thing - I know Liv just wants to be Olivia, and not " that girl with scoliosis " and I am totally behind her on that! It pisses me off when kids are so thoughtless and that they haven't been taught to have some character and instead of being obnoxious, they should be friendly. Of course, considering what you have told us in the past about that school I don't think the teachers have either. I know Olivia will hold her head high and deal with it, but she shouldn't have to. I don't think you are wrong in talking to her teacher at least, but the teacher shouldn't make a big deal about it either if it isn't warranted. I am sending big hugs and prayers that the staff in that school wise up or Shellie and I may have to come with our steel toed books and kick some academic butts into shape! Love ya, Gail and heather@... wrote: Here we again! Olivia started school yesterday, and already she is running into problems. Prior, to her starting school this year, she informed me that she did NOT want me to talk to the class about her situation. She wants to be known as Olivia, not Olivia with scoliosis. While I respect her feelings on this 100%, I came to the conclusion that this approach was not a good one. Olivia has no special needs, and you can barely even tell that she suffers from scoliosis. My issue is, if we dont inform the children of her back issues, they may not be sensitive to her very minimal needs. Which would be not to knock her down, or hit her back. Thats it. I fear that by not discussing these 2 issues with the children, I am not only doing a disservice to Olivia, but also the other children. Imagine, that one of them accidentaly knocked her down causing the rods to dislodge or break her ribs......Not only would Olivia feel horrible, but the child responsible would also be devistated.....So, I made the decision last night, that I would talk to her classmates on Thurs. I mentioned this to her teachers this a.m., and apparently one of them discussed this briefly with the class this a.m. Right after the discussion, some little boy in the class stated that Olivia walks funny and that she sticks her butt out when she walks! (his exact words) Anyway, I am on my way to her class again in a few minutes to discuss this with the teachers. This needs to be addressed immediately, so things dont spiral out of control. Thanks for listening. I needed to vent! Please share with me any ideas that you may have on how to properly handle this. This is all new to me and I want to deal with this appropriately. Thanks for any input. Trying not to overreact... HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Gail! I love ya girl!! I got this really great mental picture of us all gruffed up ready to kick some 4th grade booty!!! I needed that laugh! How have you been? Haven't seen you much on the group. I see every day. Picture is still by my computer. Give her a hug for us. Maybe we could just send in to straighten everyone out. She says some very profound things for a girl her age! Olivia is at a totally new school, not that place she was last year. I know will do well. Can you send me the link to the pics. I missed it. shellie Gail Kimball wrote: , You know I really have to wonder about that school! You are doing the right thing - I know Liv just wants to be Olivia, and not " that girl with scoliosis " and I am totally behind her on that! It pisses me off when kids are so thoughtless and that they haven't been taught to have some character and instead of being obnoxious, they should be friendly. Of course, considering what you have told us in the past about that school I don't think the teachers have either. I know Olivia will hold her head high and deal with it, but she shouldn't have to. I don't think you are wrong in talking to her teacher at least, but the teacher shouldn't make a big deal about it either if it isn't warranted. I am sending big hugs and prayers that the staff in that school wise up or Shellie and I may have to come with our steel toed books and kick some academic butts into shape! Love ya, Gail and heather@... wrote: Here we again! Olivia started school yesterday, and already she is running into problems. Prior, to her starting school this year, she informed me that she did NOT want me to talk to the class about her situation. She wants to be known as Olivia, not Olivia with scoliosis. While I respect her feelings on this 100%, I came to the conclusion that this approach was not a good one. Olivia has no special needs, and you can barely even tell that she suffers from scoliosis. My issue is, if we dont inform the children of her back issues, they may not be sensitive to her very minimal needs. Which would be not to knock her down, or hit her back. Thats it. I fear that by not discussing these 2 issues with the children, I am not only doing a disservice to Olivia, but also the other children. Imagine, that one of them accidentaly knocked her down causing the rods to dislodge or break her ribs......Not only would Olivia feel horrible, but the child responsible would also be devistated.....So, I made the decision last night, that I would talk to her classmates on Thurs. I mentioned this to her teachers this a.m., and apparently one of them discussed this briefly with the class this a.m. Right after the discussion, some little boy in the class stated that Olivia walks funny and that she sticks her butt out when she walks! (his exact words) Anyway, I am on my way to her class again in a few minutes to discuss this with the teachers. This needs to be addressed immediately, so things dont spiral out of control. Thanks for listening. I needed to vent! Please share with me any ideas that you may have on how to properly handle this. This is all new to me and I want to deal with this appropriately. Thanks for any input. Trying not to overreact... HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 Just a suggestion. I have used the Child Life Specialists from the hospital in the?past.?They'll come to your child classroom with visual aids like dolls that have scoliosis and rods and all that good stuff we have all grown so accustomed to. When first had the halo traction she came and had a doll wearing a mini halo in traction in a wheelchair!! The students loved the presentations and they were able to ask her, and myself a bunch of questions. The teachers really appreciated it too. Good Luck!! Connie Re: school issues , You'll do great. When we did Braydon's show-and-tell presentations (that word sounds much more formal than the actual event, but you know) we didn't say scoliosis. We talked about him having back surgery, and that his back was curved, and that his back needs more surgery to stay healthy, etc - just like you've suggested. Scoliosis means nothing to most people, and its such a broad/generic term anyway. Does Olivia have a 504 plan? If not, I STRONGLY suggest you get one. It is a FEDERAL law that all public schools must provide equal education for anyone with physical needs. This helped so much. Every teacher, counselor, school nurse, and administrator who would ever be in contact with her during the school day needs to attend this meeting. We used to do 504 mtgs without Braydon there, but the last one we did, Braydon came to the meeting. The teachers were able to ask HIM what he thinks would be helpful in their classroom - ie, if he needs to have a desk on the BACK row of the class, near the door, for an early out; if he would prefer sitting in the front of the class; if he needs a pillow on the back of his chair; if he needs to stand at the back of the room to stretch his back during lecture times; if he needs to kneel instead of sit cross-legged in the back of the group during story time; what would be a good code for using the bathroom; etc. Because HE made those choices, he felt more confident and more in control of something about his body. We also showed the 504 group his xrays. For Braydon, this was a good thing. A 504 plan only works well when the administration and teachers are fully supportive of it. Hopefully your school understands how they work and what kids need to have a successful and positive experience in school. Good luck. If I think of anything else, I'll let you know. Everyone else has had great ideas too. Good work everyone. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ __________________________________________________________ Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC ________________________________________________________________________ Email and AIM finally together. You've gotta check out free AOL Mail! - http://mail.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 Just a suggestion. I have used the Child Life Specialists from the hospital in the?past.?They'll come to your child classroom with visual aids like dolls that have scoliosis and rods and all that good stuff we have all grown so accustomed to. When first had the halo traction she came and had a doll wearing a mini halo in traction in a wheelchair!! The students loved the presentations and they were able to ask her, and myself a bunch of questions. The teachers really appreciated it too. Good Luck!! Connie Re: school issues , You'll do great. When we did Braydon's show-and-tell presentations (that word sounds much more formal than the actual event, but you know) we didn't say scoliosis. We talked about him having back surgery, and that his back was curved, and that his back needs more surgery to stay healthy, etc - just like you've suggested. Scoliosis means nothing to most people, and its such a broad/generic term anyway. Does Olivia have a 504 plan? If not, I STRONGLY suggest you get one. It is a FEDERAL law that all public schools must provide equal education for anyone with physical needs. This helped so much. Every teacher, counselor, school nurse, and administrator who would ever be in contact with her during the school day needs to attend this meeting. We used to do 504 mtgs without Braydon there, but the last one we did, Braydon came to the meeting. The teachers were able to ask HIM what he thinks would be helpful in their classroom - ie, if he needs to have a desk on the BACK row of the class, near the door, for an early out; if he would prefer sitting in the front of the class; if he needs a pillow on the back of his chair; if he needs to stand at the back of the room to stretch his back during lecture times; if he needs to kneel instead of sit cross-legged in the back of the group during story time; what would be a good code for using the bathroom; etc. Because HE made those choices, he felt more confident and more in control of something about his body. We also showed the 504 group his xrays. For Braydon, this was a good thing. A 504 plan only works well when the administration and teachers are fully supportive of it. Hopefully your school understands how they work and what kids need to have a successful and positive experience in school. Good luck. If I think of anything else, I'll let you know. Everyone else has had great ideas too. Good work everyone. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ __________________________________________________________ Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC ________________________________________________________________________ Email and AIM finally together. You've gotta check out free AOL Mail! - http://mail.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 , So sorry to see you're putting up with more crap from teachers. My two cents. One, in my opinion you would not be doing a disservice to the cause if you didn't use the work scoliosis when collaborating with teachers etc. This is an individual situation pertaining to how you want and need Olivia's experience at school to turn out. While she is a young girl, she seems very resolved in her decision. She's been through a lot in her young life and I can fully understand where she is coming from, she yearns to be her own individual, obviously choosing to not highlight her scoliosis. The most important thing is her safety. You bring up a very key point in that you can't have folks unknowingly putting her at risk with certain play or roughness. What I would see as an optimal situation --- satisfies your safety concerns and her individualistic concerns ---- Why can't these teachers have a conversation in confidence holding the parents wishes respectfully. If you could have the teacher watching out for Olivia's safety just in case things get rough, she could do this without singling out scoliosis. Let's face it, Olivia could tell folks she's had back surgery in the past and she needs to be careful in how she plays etc. , it seems like these teachers just don't get it or with good intentions make the problems worse. Kids can be cruel at these ages, so she should have known that one or two may use the information to tease or other. If the plan is to keep Olivia in the same class etc, I'd have a heart to heart with the teacher and ask that she try to begin soft peddling the situation and under no circumstances is she to allow disrespect to Olivia by the other kid if done in public. She caused this, she needs to fix it. Make it personal, it's her class and she should take pride in the growth and maturity of each of her students. I'd have this conversation over a cup of coffee or other, getting closer to the teacher may help turn this situation around. Just my thoughts. Jerry Re: school issues Thanks Carmell, Shellie, Sandi & everyone that responded. In the past (K thru 3rd grade) I have also met with the teachers, priciple, school nurse, etc....Anyone directly involved in her care, to discuss her minimal needs and make sure they are informed. This year was different. Olivia was adamant that I do not give any sort of classroom presentation, and that I dont make a big deal over her condition. I tried to respect these wishes, but 2 days into it, I knew this was not the best approach. I wish she could brag about her scars, but that just wont happen. She is very self conscience about her scars and has already expressed wanting to cover them with tatoos! Yikes! She just wants to be a normal little girl. She doesnt even want me to use the word scoliosis, and in a way, I cant say that I blame her. Scoliosis is a big, scarey word to people of her age. She prefers that I say that she has a curve in her back. She wants me to avaid the word scoliosis altogether. My thoughts on the presentation, which I will give tomorrow, is completely different from last year. I think I will mention to the class that most of us do have some degree of curvature in our backs. Some people have a little curves, some big, some high, some low, some have 2 curves, some even 3! And, try to celebrate our differences by using that example. I will also use the word surgery, instead of scoliosis. (I think...) I am going back and forth with this whole thing! I dont want Olivia to be ashamed of her scoliosis, and in some ways by not using the word, I may be giving her a bad message. I wish she was at the age where she could be proud of the obstacles she has overcome, and would realize how wonderful she is doing, considering what she has been through. I certainly dont want her to think that scoliosis is something to hide or be ashamed of....But, I am trying to put myself in her shoes, while being realistic, too. I need more input from you guys! Please help. Do you think that by not mentioning the word scoliosis, I am doing her and everyone, including " the cause " a disservice. ?? H. > , > > I have lots of thoughts about this... hopefully I can > consolodate my thoughts so they are understandable. > > Braydon and I have always given and " show and tell " > presentation to his class at the beginning of the > school year (this is AFTER we've met with any/all > teachers/administrator in a 504 meeting so the > teachers/adults are well aware of his condition(s)). > We bring xrays, photos and any " visual aids " that are > necessary (age appropriate) to help the kids > understand why they can't touch/push/hit Braydon in > the back. When they can SEE (via the visual aids) > what we're lecturing about, it makes more sense to > them and the remember better (there will always be > some kids who forget). > > After we talk about why its important to give Braydon > his personal space (and discussing what personal space > means) we talk about the MANY things he CAN do. We > let them ask questions about him and what he can and > can't do (no, tackle soccer is not an option). So > many things she/they CAN do. > > Braydon usually feels confident enough that he will > take his shirt off and show the kids his back. They > think the scars are cool. I think this is the biggest > " seller " for the kids - seeing that his back isn't > straight and symmetrical like everyone else's. For > girls, I'm sure this is a more sensitive subject. > > We also talk to the teacher before the " show and tell " > session about code words or things that the other kids > may feel are " special privileges. For example, we > worked out a way for Braydon to be able to go to the > restroom whenever he needed to (neurogenic bladder) > without getting permission. We also came up with a > plan to help kids avoid being behind him most the > time. He is the " sweep " . He is to be last in line > for anything - leaving the classroom for PE, recess, > lunch, assemblies, etc. To avoid the negativity of > being last, he is given some " responsibilities " with > being the sweep. He turns out the light in the > classroom, closes the door, makes sure no one is > behind him, etc. Whatever the age appropriate > assignment should be. Being the sweep became a > natural thing for him and his classmates. It was just > the way the class was. This avoided anyone pushing > him in the back in lunch line, or coming in from > recess (when they have to funnel/push through the > doorways). > > We started this when Braydon was in 1st grade. From > that time on, he had a group of girls who tried to > " mother " him, especially when they were outside or > away from the classroom. He hated it, but they made > sure no one came near him LOL. It was only > occasionally they would do this, but it kind of > helped, actually. > > We can't put our kids in bubble wrap. They are going > to have experiences in life that we don't like. > However, there are ways to make life a little less > stressful and a little less dangerous for our > seemingly fragile kids. Braydon has had very few > negative experiences in school. I think by stressing > differences (we're all different - some people need > shots everyday (diabetics), some people wear glasses, > some people are in a wheelchair, etc.) it helps them > see how much LIKE them she is. I would ask everyone > with blue eyes to raise their hand. Everyone with > black hair... everyone who has had a broken bone... > everyone who wears glasses... etc. You can customize > the questions to the class. Point out that not > everyone raises their hands for every question. > Everyone is different. That's what makes life fun and > exciting. etc. etc. etc. > > I'm done rambling, I promise. I know you'll do great. > The biggest thing is to not panic. Olivia picks up > on your emotions (you know all this). Let her know > that you will support her 100% and you will help her > have a fantastic year, because she deserves it. > > Let us know how things go. > Carmell > > > > > Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and > Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR > patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib > anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal > stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter > in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant > surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot > with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length > discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, > etc. http://carmellb-ivil.tripod.com/myfamily/ > > Congenital scoliosis support group > http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ > > > > __________________________________________________________ > Looking for a deal? Find great prices on flights and hotels with Yahoo! > FareChase. > http://farechase.yahoo.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 , So sorry to see you're putting up with more crap from teachers. My two cents. One, in my opinion you would not be doing a disservice to the cause if you didn't use the work scoliosis when collaborating with teachers etc. This is an individual situation pertaining to how you want and need Olivia's experience at school to turn out. While she is a young girl, she seems very resolved in her decision. She's been through a lot in her young life and I can fully understand where she is coming from, she yearns to be her own individual, obviously choosing to not highlight her scoliosis. The most important thing is her safety. You bring up a very key point in that you can't have folks unknowingly putting her at risk with certain play or roughness. What I would see as an optimal situation --- satisfies your safety concerns and her individualistic concerns ---- Why can't these teachers have a conversation in confidence holding the parents wishes respectfully. If you could have the teacher watching out for Olivia's safety just in case things get rough, she could do this without singling out scoliosis. Let's face it, Olivia could tell folks she's had back surgery in the past and she needs to be careful in how she plays etc. , it seems like these teachers just don't get it or with good intentions make the problems worse. Kids can be cruel at these ages, so she should have known that one or two may use the information to tease or other. If the plan is to keep Olivia in the same class etc, I'd have a heart to heart with the teacher and ask that she try to begin soft peddling the situation and under no circumstances is she to allow disrespect to Olivia by the other kid if done in public. She caused this, she needs to fix it. Make it personal, it's her class and she should take pride in the growth and maturity of each of her students. I'd have this conversation over a cup of coffee or other, getting closer to the teacher may help turn this situation around. Just my thoughts. Jerry Re: school issues Thanks Carmell, Shellie, Sandi & everyone that responded. In the past (K thru 3rd grade) I have also met with the teachers, priciple, school nurse, etc....Anyone directly involved in her care, to discuss her minimal needs and make sure they are informed. This year was different. Olivia was adamant that I do not give any sort of classroom presentation, and that I dont make a big deal over her condition. I tried to respect these wishes, but 2 days into it, I knew this was not the best approach. I wish she could brag about her scars, but that just wont happen. She is very self conscience about her scars and has already expressed wanting to cover them with tatoos! Yikes! She just wants to be a normal little girl. She doesnt even want me to use the word scoliosis, and in a way, I cant say that I blame her. Scoliosis is a big, scarey word to people of her age. She prefers that I say that she has a curve in her back. She wants me to avaid the word scoliosis altogether. My thoughts on the presentation, which I will give tomorrow, is completely different from last year. I think I will mention to the class that most of us do have some degree of curvature in our backs. Some people have a little curves, some big, some high, some low, some have 2 curves, some even 3! And, try to celebrate our differences by using that example. I will also use the word surgery, instead of scoliosis. (I think...) I am going back and forth with this whole thing! I dont want Olivia to be ashamed of her scoliosis, and in some ways by not using the word, I may be giving her a bad message. I wish she was at the age where she could be proud of the obstacles she has overcome, and would realize how wonderful she is doing, considering what she has been through. I certainly dont want her to think that scoliosis is something to hide or be ashamed of....But, I am trying to put myself in her shoes, while being realistic, too. I need more input from you guys! Please help. Do you think that by not mentioning the word scoliosis, I am doing her and everyone, including " the cause " a disservice. ?? H. > , > > I have lots of thoughts about this... hopefully I can > consolodate my thoughts so they are understandable. > > Braydon and I have always given and " show and tell " > presentation to his class at the beginning of the > school year (this is AFTER we've met with any/all > teachers/administrator in a 504 meeting so the > teachers/adults are well aware of his condition(s)). > We bring xrays, photos and any " visual aids " that are > necessary (age appropriate) to help the kids > understand why they can't touch/push/hit Braydon in > the back. When they can SEE (via the visual aids) > what we're lecturing about, it makes more sense to > them and the remember better (there will always be > some kids who forget). > > After we talk about why its important to give Braydon > his personal space (and discussing what personal space > means) we talk about the MANY things he CAN do. We > let them ask questions about him and what he can and > can't do (no, tackle soccer is not an option). So > many things she/they CAN do. > > Braydon usually feels confident enough that he will > take his shirt off and show the kids his back. They > think the scars are cool. I think this is the biggest > " seller " for the kids - seeing that his back isn't > straight and symmetrical like everyone else's. For > girls, I'm sure this is a more sensitive subject. > > We also talk to the teacher before the " show and tell " > session about code words or things that the other kids > may feel are " special privileges. For example, we > worked out a way for Braydon to be able to go to the > restroom whenever he needed to (neurogenic bladder) > without getting permission. We also came up with a > plan to help kids avoid being behind him most the > time. He is the " sweep " . He is to be last in line > for anything - leaving the classroom for PE, recess, > lunch, assemblies, etc. To avoid the negativity of > being last, he is given some " responsibilities " with > being the sweep. He turns out the light in the > classroom, closes the door, makes sure no one is > behind him, etc. Whatever the age appropriate > assignment should be. Being the sweep became a > natural thing for him and his classmates. It was just > the way the class was. This avoided anyone pushing > him in the back in lunch line, or coming in from > recess (when they have to funnel/push through the > doorways). > > We started this when Braydon was in 1st grade. From > that time on, he had a group of girls who tried to > " mother " him, especially when they were outside or > away from the classroom. He hated it, but they made > sure no one came near him LOL. It was only > occasionally they would do this, but it kind of > helped, actually. > > We can't put our kids in bubble wrap. They are going > to have experiences in life that we don't like. > However, there are ways to make life a little less > stressful and a little less dangerous for our > seemingly fragile kids. Braydon has had very few > negative experiences in school. I think by stressing > differences (we're all different - some people need > shots everyday (diabetics), some people wear glasses, > some people are in a wheelchair, etc.) it helps them > see how much LIKE them she is. I would ask everyone > with blue eyes to raise their hand. Everyone with > black hair... everyone who has had a broken bone... > everyone who wears glasses... etc. You can customize > the questions to the class. Point out that not > everyone raises their hands for every question. > Everyone is different. That's what makes life fun and > exciting. etc. etc. etc. > > I'm done rambling, I promise. I know you'll do great. > The biggest thing is to not panic. Olivia picks up > on your emotions (you know all this). Let her know > that you will support her 100% and you will help her > have a fantastic year, because she deserves it. > > Let us know how things go. > Carmell > > > > > Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and > Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR > patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib > anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal > stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter > in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant > surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot > with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length > discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, > etc. http://carmellb-ivil.tripod.com/myfamily/ > > Congenital scoliosis support group > http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ > > > > __________________________________________________________ > Looking for a deal? Find great prices on flights and hotels with Yahoo! > FareChase. > http://farechase.yahoo.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 Hi and everyone I am sorry to hear that Olivia is having to put up with tactless comments in her new school class. It is so hard to know how to support Olivia's natural desire to be " just like everyone else " and at the same time communicate information necessary to keep her safe. How did you react when Olivia told you about the tactless " butt " comment? Did you manage to swallow your natural mother instinct to want to punch his face and say " well wasn't that a rude thing to say, did someone else say something that showed they were interested in your operation? " I think as the kids are getting older and we have all worked so hard to keep them confident and positive, sometimes it's a good idea to be really honest with our kids and tell them sometimes other kids and adults make tactless comments because they have no idea what you have gone through. In a way it really shows just how " normal " Olivia looks but that would be hard for Olivia to understand. Maybe the class teacher could start a program on celebrating differences or have all the kids talk about and write about their differences. You would need to have a sensitive and tactful teacher who can talk to the kids about how to support everyone rather than being too heavy and telling the kids they all have to be kind to Olivia and careful of her because that would make it really hard for her. I would take the photo album and the xrays to the teacher and show her the pictures of Olivia's halo and the casts with head pieces and the rods and the before and after xrays and just show her very quickly how far she has come. That will explain to the teacher why Olivia is so keen to down play her scoliosis and be normal but also explain why she is not used to any sort of teasing about her posture or anything to do with her back. I don't know if it's a cultural difference but in Australia kids tease each other all the time, not in a nasty way but in a friendly sort of way. But there are unwritten rules that the kids know eg if Olivia was in a brace or a cast no one would tease her about that but they might say something cheeky about her hair and she would giggle or look fierce then it would turn into a game of tag. But it wouldn't be nasty, it's just the way they communicate. The kids know what you don't tease about because that would be bullying. I suppose it underlines why we usually all start each school year with the show and tell presentation. Teachers, classmates and parents need to know the story so that Olivia can stay safe at school. Good luck and I hope it goes well Love to Olivia Bert and Bridget Shellie Grant wrote: Gail! I love ya girl!! I got this really great mental picture of us all gruffed up ready to kick some 4th grade booty!!! I needed that laugh! How have you been? Haven't seen you much on the group. I see every day. Picture is still by my computer. Give her a hug for us. Maybe we could just send in to straighten everyone out. She says some very profound things for a girl her age! Olivia is at a totally new school, not that place she was last year. I know will do well. Can you send me the link to the pics. I missed it. shellie Gail Kimball wrote: , You know I really have to wonder about that school! You are doing the right thing - I know Liv just wants to be Olivia, and not " that girl with scoliosis " and I am totally behind her on that! It pisses me off when kids are so thoughtless and that they haven't been taught to have some character and instead of being obnoxious, they should be friendly. Of course, considering what you have told us in the past about that school I don't think the teachers have either. I know Olivia will hold her head high and deal with it, but she shouldn't have to. I don't think you are wrong in talking to her teacher at least, but the teacher shouldn't make a big deal about it either if it isn't warranted. I am sending big hugs and prayers that the staff in that school wise up or Shellie and I may have to come with our steel toed books and kick some academic butts into shape! Love ya, Gail and heather@... wrote: Here we again! Olivia started school yesterday, and already she is running into problems. Prior, to her starting school this year, she informed me that she did NOT want me to talk to the class about her situation. She wants to be known as Olivia, not Olivia with scoliosis. While I respect her feelings on this 100%, I came to the conclusion that this approach was not a good one. Olivia has no special needs, and you can barely even tell that she suffers from scoliosis. My issue is, if we dont inform the children of her back issues, they may not be sensitive to her very minimal needs. Which would be not to knock her down, or hit her back. Thats it. I fear that by not discussing these 2 issues with the children, I am not only doing a disservice to Olivia, but also the other children. Imagine, that one of them accidentaly knocked her down causing the rods to dislodge or break her ribs......Not only would Olivia feel horrible, but the child responsible would also be devistated.....So, I made the decision last night, that I would talk to her classmates on Thurs. I mentioned this to her teachers this a.m., and apparently one of them discussed this briefly with the class this a.m. Right after the discussion, some little boy in the class stated that Olivia walks funny and that she sticks her butt out when she walks! (his exact words) Anyway, I am on my way to her class again in a few minutes to discuss this with the teachers. This needs to be addressed immediately, so things dont spiral out of control. Thanks for listening. I needed to vent! Please share with me any ideas that you may have on how to properly handle this. This is all new to me and I want to deal with this appropriately. Thanks for any input. Trying not to overreact... HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 Hi and everyone I am sorry to hear that Olivia is having to put up with tactless comments in her new school class. It is so hard to know how to support Olivia's natural desire to be " just like everyone else " and at the same time communicate information necessary to keep her safe. How did you react when Olivia told you about the tactless " butt " comment? Did you manage to swallow your natural mother instinct to want to punch his face and say " well wasn't that a rude thing to say, did someone else say something that showed they were interested in your operation? " I think as the kids are getting older and we have all worked so hard to keep them confident and positive, sometimes it's a good idea to be really honest with our kids and tell them sometimes other kids and adults make tactless comments because they have no idea what you have gone through. In a way it really shows just how " normal " Olivia looks but that would be hard for Olivia to understand. Maybe the class teacher could start a program on celebrating differences or have all the kids talk about and write about their differences. You would need to have a sensitive and tactful teacher who can talk to the kids about how to support everyone rather than being too heavy and telling the kids they all have to be kind to Olivia and careful of her because that would make it really hard for her. I would take the photo album and the xrays to the teacher and show her the pictures of Olivia's halo and the casts with head pieces and the rods and the before and after xrays and just show her very quickly how far she has come. That will explain to the teacher why Olivia is so keen to down play her scoliosis and be normal but also explain why she is not used to any sort of teasing about her posture or anything to do with her back. I don't know if it's a cultural difference but in Australia kids tease each other all the time, not in a nasty way but in a friendly sort of way. But there are unwritten rules that the kids know eg if Olivia was in a brace or a cast no one would tease her about that but they might say something cheeky about her hair and she would giggle or look fierce then it would turn into a game of tag. But it wouldn't be nasty, it's just the way they communicate. The kids know what you don't tease about because that would be bullying. I suppose it underlines why we usually all start each school year with the show and tell presentation. Teachers, classmates and parents need to know the story so that Olivia can stay safe at school. Good luck and I hope it goes well Love to Olivia Bert and Bridget Shellie Grant wrote: Gail! I love ya girl!! I got this really great mental picture of us all gruffed up ready to kick some 4th grade booty!!! I needed that laugh! How have you been? Haven't seen you much on the group. I see every day. Picture is still by my computer. Give her a hug for us. Maybe we could just send in to straighten everyone out. She says some very profound things for a girl her age! Olivia is at a totally new school, not that place she was last year. I know will do well. Can you send me the link to the pics. I missed it. shellie Gail Kimball wrote: , You know I really have to wonder about that school! You are doing the right thing - I know Liv just wants to be Olivia, and not " that girl with scoliosis " and I am totally behind her on that! It pisses me off when kids are so thoughtless and that they haven't been taught to have some character and instead of being obnoxious, they should be friendly. Of course, considering what you have told us in the past about that school I don't think the teachers have either. I know Olivia will hold her head high and deal with it, but she shouldn't have to. I don't think you are wrong in talking to her teacher at least, but the teacher shouldn't make a big deal about it either if it isn't warranted. I am sending big hugs and prayers that the staff in that school wise up or Shellie and I may have to come with our steel toed books and kick some academic butts into shape! Love ya, Gail and heather@... wrote: Here we again! Olivia started school yesterday, and already she is running into problems. Prior, to her starting school this year, she informed me that she did NOT want me to talk to the class about her situation. She wants to be known as Olivia, not Olivia with scoliosis. While I respect her feelings on this 100%, I came to the conclusion that this approach was not a good one. Olivia has no special needs, and you can barely even tell that she suffers from scoliosis. My issue is, if we dont inform the children of her back issues, they may not be sensitive to her very minimal needs. Which would be not to knock her down, or hit her back. Thats it. I fear that by not discussing these 2 issues with the children, I am not only doing a disservice to Olivia, but also the other children. Imagine, that one of them accidentaly knocked her down causing the rods to dislodge or break her ribs......Not only would Olivia feel horrible, but the child responsible would also be devistated.....So, I made the decision last night, that I would talk to her classmates on Thurs. I mentioned this to her teachers this a.m., and apparently one of them discussed this briefly with the class this a.m. Right after the discussion, some little boy in the class stated that Olivia walks funny and that she sticks her butt out when she walks! (his exact words) Anyway, I am on my way to her class again in a few minutes to discuss this with the teachers. This needs to be addressed immediately, so things dont spiral out of control. Thanks for listening. I needed to vent! Please share with me any ideas that you may have on how to properly handle this. This is all new to me and I want to deal with this appropriately. Thanks for any input. Trying not to overreact... HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 I am so lucky to have all of you for support. Thanks to everyone who responded.... I had a lengthy discussion with the Principal yesterday, and it was very productive. Olivia and I will give a brief, creative presentation on Tuesday a.m. We will make it as fun/creative as possible, and Olivia will own it. I have decided that I will use the terms surgery and curve in her back. Not, the word scoliosis. 4th graders understand curve better than the medical term scoliosis. I will not refrain from using this word in the future, but for now the words curve/surgery wil be most productive/understandable for our young audience. Scoliosis will never be a bad word in our house. This is lifetime reality for my daughter. She will always have a deformity, and issues because of scoliosis. If not mentioning scoliosis at this little presenation helps her cope with her scoliosis challenges at school, than thats perfectly alright. I must lessen the burden of her challenges physical/emotional everyday, in the best way that I can. I remember the 1st time I heard the term scoliosis in the 7th grade, and it scared me. I was scared that I would catch it. I dont want to use it at this time in her life. I may see things differently next year. Again, I am so lucky to have all of you. I got emotional this a.m. reading all of your responses. You are all so caring and dear to me. Thank you. HRH > Hi and everyone > > I am sorry to hear that Olivia is having to put up with tactless > comments in her new school class. It is so hard to know how to support > Olivia's natural desire to be " just like everyone else " and at the same > time communicate information necessary to keep her safe. > > How did you react when Olivia told you about the tactless " butt " > comment? Did you manage to swallow your natural mother instinct to want > to punch his face and say " well wasn't that a rude thing to say, did > someone else say something that showed they were interested in your > operation? " > > I think as the kids are getting older and we have all worked so hard to > keep them confident and positive, sometimes it's a good idea to be > really honest with our kids and tell them sometimes other kids and > adults make tactless comments because they have no idea what you have > gone through. In a way it really shows just how " normal " Olivia looks > but that would be hard for Olivia to understand. > > Maybe the class teacher could start a program on celebrating differences > or have all the kids talk about and write about their differences. You > would need to have a sensitive and tactful teacher who can talk to the > kids about how to support everyone rather than being too heavy and > telling the kids they all have to be kind to Olivia and careful of her > because that would make it really hard for her. > > I would take the photo album and the xrays to the teacher and show her > the pictures of Olivia's halo and the casts with head pieces and the > rods and the before and after xrays and just show her very quickly how > far she has come. That will explain to the teacher why Olivia is so > keen to down play her scoliosis and be normal but also explain why she > is not used to any sort of teasing about her posture or anything to do > with her back. > > I don't know if it's a cultural difference but in Australia kids tease > each other all the time, not in a nasty way but in a friendly sort of > way. But there are unwritten rules that the kids know eg if Olivia was > in a brace or a cast no one would tease her about that but they might > say something cheeky about her hair and she would giggle or look fierce > then it would turn into a game of tag. But it wouldn't be nasty, it's > just the way they communicate. > > The kids know what you don't tease about because that would be bullying. > > I suppose it underlines why we usually all start each school year with > the show and tell presentation. Teachers, classmates and parents need > to know the story so that Olivia can stay safe at school. > > Good luck and I hope it goes well > Love to Olivia > Bert and Bridget > > Shellie Grant wrote: > Gail! I love ya girl!! I got this really great mental picture of > us all gruffed up ready to kick some 4th grade booty!!! I needed > that laugh! How have you been? Haven't seen you much on the > group. I see every day. Picture is still by my computer. > Give her a hug for us. Maybe we could just send in to > straighten everyone out. She says some very profound things for > a girl her age! Olivia is at a totally new school, not that > place she was last year. I know will do well. Can you > send me the link to the pics. I missed it. > > shellie > > Gail Kimball wrote: > , > You know I really have to wonder about that school! > > You are doing the right thing - I know Liv just wants to be Olivia, and > not " that girl with scoliosis " and I am totally behind her on that! > > It pisses me off when kids are so thoughtless and that they haven't been > taught to have some character and instead of being obnoxious, they should > be friendly. Of course, considering what you have told us in the past > about that school I don't think the teachers have either. > > I know Olivia will hold her head high and deal with it, but she shouldn't > have to. I don't think you are wrong in talking to her teacher at least, > but the teacher shouldn't make a big deal about it either if it isn't > warranted. I am sending big hugs and prayers that the staff in that school > wise up or Shellie and I may have to come with our steel toed books and > kick some academic butts into shape! > > Love ya, > Gail and > > heather@... wrote: > Here we again! > Olivia started school yesterday, and already she is running into problems. > Prior, to her starting school this year, she informed me that she did NOT > want me to talk to the class about her situation. She wants to be known > as Olivia, not Olivia with scoliosis. While I respect her feelings on > this 100%, I came to the conclusion that this approach was not a good one. > Olivia has no special needs, and you can barely even tell that she > suffers from scoliosis. My issue is, if we dont inform the children of > her back issues, they may not be sensitive to her very minimal needs. > Which would be not to knock her down, or hit her back. Thats it. I fear > that by not discussing these 2 issues with the children, I am not only > doing a disservice to Olivia, but also the other children. Imagine, that > one of them accidentaly knocked her down causing the rods to dislodge or > break her ribs......Not only would Olivia feel horrible, but the child > responsible would also be devistated.....So, I made the decision last > night, that I would talk to her classmates on Thurs. > I mentioned this to her teachers this a.m., and apparently one of them > discussed this briefly with the class this a.m. Right after the > discussion, some little boy in the class stated that Olivia walks funny > and that she sticks her butt out when she walks! (his exact words) > Anyway, I am on my way to her class again in a few minutes to discuss this > with the teachers. This needs to be addressed immediately, so things dont > spiral out of control. > Thanks for listening. I needed to vent! Please share with me any ideas > that you may have on how to properly handle this. This is all new to me > and I want to deal with this appropriately. > Thanks for any input. > Trying not to overreact... > HRH > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 I am so lucky to have all of you for support. Thanks to everyone who responded.... I had a lengthy discussion with the Principal yesterday, and it was very productive. Olivia and I will give a brief, creative presentation on Tuesday a.m. We will make it as fun/creative as possible, and Olivia will own it. I have decided that I will use the terms surgery and curve in her back. Not, the word scoliosis. 4th graders understand curve better than the medical term scoliosis. I will not refrain from using this word in the future, but for now the words curve/surgery wil be most productive/understandable for our young audience. Scoliosis will never be a bad word in our house. This is lifetime reality for my daughter. She will always have a deformity, and issues because of scoliosis. If not mentioning scoliosis at this little presenation helps her cope with her scoliosis challenges at school, than thats perfectly alright. I must lessen the burden of her challenges physical/emotional everyday, in the best way that I can. I remember the 1st time I heard the term scoliosis in the 7th grade, and it scared me. I was scared that I would catch it. I dont want to use it at this time in her life. I may see things differently next year. Again, I am so lucky to have all of you. I got emotional this a.m. reading all of your responses. You are all so caring and dear to me. Thank you. HRH > Hi and everyone > > I am sorry to hear that Olivia is having to put up with tactless > comments in her new school class. It is so hard to know how to support > Olivia's natural desire to be " just like everyone else " and at the same > time communicate information necessary to keep her safe. > > How did you react when Olivia told you about the tactless " butt " > comment? Did you manage to swallow your natural mother instinct to want > to punch his face and say " well wasn't that a rude thing to say, did > someone else say something that showed they were interested in your > operation? " > > I think as the kids are getting older and we have all worked so hard to > keep them confident and positive, sometimes it's a good idea to be > really honest with our kids and tell them sometimes other kids and > adults make tactless comments because they have no idea what you have > gone through. In a way it really shows just how " normal " Olivia looks > but that would be hard for Olivia to understand. > > Maybe the class teacher could start a program on celebrating differences > or have all the kids talk about and write about their differences. You > would need to have a sensitive and tactful teacher who can talk to the > kids about how to support everyone rather than being too heavy and > telling the kids they all have to be kind to Olivia and careful of her > because that would make it really hard for her. > > I would take the photo album and the xrays to the teacher and show her > the pictures of Olivia's halo and the casts with head pieces and the > rods and the before and after xrays and just show her very quickly how > far she has come. That will explain to the teacher why Olivia is so > keen to down play her scoliosis and be normal but also explain why she > is not used to any sort of teasing about her posture or anything to do > with her back. > > I don't know if it's a cultural difference but in Australia kids tease > each other all the time, not in a nasty way but in a friendly sort of > way. But there are unwritten rules that the kids know eg if Olivia was > in a brace or a cast no one would tease her about that but they might > say something cheeky about her hair and she would giggle or look fierce > then it would turn into a game of tag. But it wouldn't be nasty, it's > just the way they communicate. > > The kids know what you don't tease about because that would be bullying. > > I suppose it underlines why we usually all start each school year with > the show and tell presentation. Teachers, classmates and parents need > to know the story so that Olivia can stay safe at school. > > Good luck and I hope it goes well > Love to Olivia > Bert and Bridget > > Shellie Grant wrote: > Gail! I love ya girl!! I got this really great mental picture of > us all gruffed up ready to kick some 4th grade booty!!! I needed > that laugh! How have you been? Haven't seen you much on the > group. I see every day. Picture is still by my computer. > Give her a hug for us. Maybe we could just send in to > straighten everyone out. She says some very profound things for > a girl her age! Olivia is at a totally new school, not that > place she was last year. I know will do well. Can you > send me the link to the pics. I missed it. > > shellie > > Gail Kimball wrote: > , > You know I really have to wonder about that school! > > You are doing the right thing - I know Liv just wants to be Olivia, and > not " that girl with scoliosis " and I am totally behind her on that! > > It pisses me off when kids are so thoughtless and that they haven't been > taught to have some character and instead of being obnoxious, they should > be friendly. Of course, considering what you have told us in the past > about that school I don't think the teachers have either. > > I know Olivia will hold her head high and deal with it, but she shouldn't > have to. I don't think you are wrong in talking to her teacher at least, > but the teacher shouldn't make a big deal about it either if it isn't > warranted. I am sending big hugs and prayers that the staff in that school > wise up or Shellie and I may have to come with our steel toed books and > kick some academic butts into shape! > > Love ya, > Gail and > > heather@... wrote: > Here we again! > Olivia started school yesterday, and already she is running into problems. > Prior, to her starting school this year, she informed me that she did NOT > want me to talk to the class about her situation. She wants to be known > as Olivia, not Olivia with scoliosis. While I respect her feelings on > this 100%, I came to the conclusion that this approach was not a good one. > Olivia has no special needs, and you can barely even tell that she > suffers from scoliosis. My issue is, if we dont inform the children of > her back issues, they may not be sensitive to her very minimal needs. > Which would be not to knock her down, or hit her back. Thats it. I fear > that by not discussing these 2 issues with the children, I am not only > doing a disservice to Olivia, but also the other children. Imagine, that > one of them accidentaly knocked her down causing the rods to dislodge or > break her ribs......Not only would Olivia feel horrible, but the child > responsible would also be devistated.....So, I made the decision last > night, that I would talk to her classmates on Thurs. > I mentioned this to her teachers this a.m., and apparently one of them > discussed this briefly with the class this a.m. Right after the > discussion, some little boy in the class stated that Olivia walks funny > and that she sticks her butt out when she walks! (his exact words) > Anyway, I am on my way to her class again in a few minutes to discuss this > with the teachers. This needs to be addressed immediately, so things dont > spiral out of control. > Thanks for listening. I needed to vent! Please share with me any ideas > that you may have on how to properly handle this. This is all new to me > and I want to deal with this appropriately. > Thanks for any input. > Trying not to overreact... > HRH > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 I am so lucky to have all of you for support. Thanks to everyone who responded.... I had a lengthy discussion with the Principal yesterday, and it was very productive. Olivia and I will give a brief, creative presentation on Tuesday a.m. We will make it as fun/creative as possible, and Olivia will own it. I have decided that I will use the terms surgery and curve in her back. Not, the word scoliosis. 4th graders understand curve better than the medical term scoliosis. I will not refrain from using this word in the future, but for now the words curve/surgery wil be most productive/understandable for our young audience. Scoliosis will never be a bad word in our house. This is lifetime reality for my daughter. She will always have a deformity, and issues because of scoliosis. If not mentioning scoliosis at this little presenation helps her cope with her scoliosis challenges at school, than thats perfectly alright. I must lessen the burden of her challenges physical/emotional everyday, in the best way that I can. I remember the 1st time I heard the term scoliosis in the 7th grade, and it scared me. I was scared that I would catch it. I dont want to use it at this time in her life. I may see things differently next year. Again, I am so lucky to have all of you. I got emotional this a.m. reading all of your responses. You are all so caring and dear to me. Thank you. HRH > Hi and everyone > > I am sorry to hear that Olivia is having to put up with tactless > comments in her new school class. It is so hard to know how to support > Olivia's natural desire to be " just like everyone else " and at the same > time communicate information necessary to keep her safe. > > How did you react when Olivia told you about the tactless " butt " > comment? Did you manage to swallow your natural mother instinct to want > to punch his face and say " well wasn't that a rude thing to say, did > someone else say something that showed they were interested in your > operation? " > > I think as the kids are getting older and we have all worked so hard to > keep them confident and positive, sometimes it's a good idea to be > really honest with our kids and tell them sometimes other kids and > adults make tactless comments because they have no idea what you have > gone through. In a way it really shows just how " normal " Olivia looks > but that would be hard for Olivia to understand. > > Maybe the class teacher could start a program on celebrating differences > or have all the kids talk about and write about their differences. You > would need to have a sensitive and tactful teacher who can talk to the > kids about how to support everyone rather than being too heavy and > telling the kids they all have to be kind to Olivia and careful of her > because that would make it really hard for her. > > I would take the photo album and the xrays to the teacher and show her > the pictures of Olivia's halo and the casts with head pieces and the > rods and the before and after xrays and just show her very quickly how > far she has come. That will explain to the teacher why Olivia is so > keen to down play her scoliosis and be normal but also explain why she > is not used to any sort of teasing about her posture or anything to do > with her back. > > I don't know if it's a cultural difference but in Australia kids tease > each other all the time, not in a nasty way but in a friendly sort of > way. But there are unwritten rules that the kids know eg if Olivia was > in a brace or a cast no one would tease her about that but they might > say something cheeky about her hair and she would giggle or look fierce > then it would turn into a game of tag. But it wouldn't be nasty, it's > just the way they communicate. > > The kids know what you don't tease about because that would be bullying. > > I suppose it underlines why we usually all start each school year with > the show and tell presentation. Teachers, classmates and parents need > to know the story so that Olivia can stay safe at school. > > Good luck and I hope it goes well > Love to Olivia > Bert and Bridget > > Shellie Grant wrote: > Gail! I love ya girl!! I got this really great mental picture of > us all gruffed up ready to kick some 4th grade booty!!! I needed > that laugh! How have you been? Haven't seen you much on the > group. I see every day. Picture is still by my computer. > Give her a hug for us. Maybe we could just send in to > straighten everyone out. She says some very profound things for > a girl her age! Olivia is at a totally new school, not that > place she was last year. I know will do well. Can you > send me the link to the pics. I missed it. > > shellie > > Gail Kimball wrote: > , > You know I really have to wonder about that school! > > You are doing the right thing - I know Liv just wants to be Olivia, and > not " that girl with scoliosis " and I am totally behind her on that! > > It pisses me off when kids are so thoughtless and that they haven't been > taught to have some character and instead of being obnoxious, they should > be friendly. Of course, considering what you have told us in the past > about that school I don't think the teachers have either. > > I know Olivia will hold her head high and deal with it, but she shouldn't > have to. I don't think you are wrong in talking to her teacher at least, > but the teacher shouldn't make a big deal about it either if it isn't > warranted. I am sending big hugs and prayers that the staff in that school > wise up or Shellie and I may have to come with our steel toed books and > kick some academic butts into shape! > > Love ya, > Gail and > > heather@... wrote: > Here we again! > Olivia started school yesterday, and already she is running into problems. > Prior, to her starting school this year, she informed me that she did NOT > want me to talk to the class about her situation. She wants to be known > as Olivia, not Olivia with scoliosis. While I respect her feelings on > this 100%, I came to the conclusion that this approach was not a good one. > Olivia has no special needs, and you can barely even tell that she > suffers from scoliosis. My issue is, if we dont inform the children of > her back issues, they may not be sensitive to her very minimal needs. > Which would be not to knock her down, or hit her back. Thats it. I fear > that by not discussing these 2 issues with the children, I am not only > doing a disservice to Olivia, but also the other children. Imagine, that > one of them accidentaly knocked her down causing the rods to dislodge or > break her ribs......Not only would Olivia feel horrible, but the child > responsible would also be devistated.....So, I made the decision last > night, that I would talk to her classmates on Thurs. > I mentioned this to her teachers this a.m., and apparently one of them > discussed this briefly with the class this a.m. Right after the > discussion, some little boy in the class stated that Olivia walks funny > and that she sticks her butt out when she walks! (his exact words) > Anyway, I am on my way to her class again in a few minutes to discuss this > with the teachers. This needs to be addressed immediately, so things dont > spiral out of control. > Thanks for listening. I needed to vent! Please share with me any ideas > that you may have on how to properly handle this. This is all new to me > and I want to deal with this appropriately. > Thanks for any input. > Trying not to overreact... > HRH > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2010 Report Share Posted October 11, 2010 this year is such turn around for my 6 yr old last year b/f Dx was a nightmare his teacher is making all the difference her sis was aspies and she has a special ed training she says she pulles from her personal experience with him more than any training so she is great with him and us shes an answered prayer but im alread afraid for next year we live in a small school district and they initally refusedto special ed tes him and said the peditricians Dx was not good enough and said he 3ill not qualify for 504 in the state of tx i was so angery i know it was lies and they changed their mind and chose to special ed test him we are doing that now and there are still issues but not so bad right now what do i do if the testing comes back and they are like every thing in ok b/c they dont want to spend the money to get him the help he needs i hate this fight! i know i can fight it i read all the laws and such but i worry non the less this school thinks they are above the law in this area moving districts is out i tried b/f this yr no go there is a school dist with special needs program that even his doctor said i should try to get him in but the waiting list is forever and its a public school !!! any advise will be appriciated thanks wg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2010 Report Share Posted October 21, 2010 You should go to www.wrightslaw.com and do a lot of studying. get everything in writing from them, especially if they are denying a service. Write follow up letters to your meetings. Roxanna "I predict future happiness for Americans if they can prevent the government from wasting the labors of the people under the pretense of taking care of them." - Jefferson ( ) school issues this year is such turn around for my 6 yr old last year b/f Dx was a nightmare his teacher is making all the difference her sis was aspies and she has a special ed training she says she pulles from her personal experience with him more than any training so she is great with him and us shes an answered prayer but im alread afraid for next year we live in a small school district and they initally refusedto special ed tes him and said the peditricians Dx was not good enough and said he 3ill not qualify for 504 in the state of tx i was so angery i know it was lies and they changed their mind and chose to special ed test him we are doing that now and there are still issues but not so bad right now what do i do if the testing comes back and they are like every thing in ok b/c they dont want to spend the money to get him the help he needs i hate this fight! i know i can fight it i read all the laws and such but i worry non the less this school thinks they are above the law in this area moving districts is out i tried b/f this yr no go there is a school dist with special needs program that even his doctor said i should try to get him in but the waiting list is forever and its a public school !!! any advise will be appriciated thanks wg Quote Link to comment Share on other sites More sharing options...
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