Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 Tasha, You’re even positive when you vent. Truly a breath of fresh air. I am a “cup half full” sort of person (or so I have been told), so I really notice how people react to different situations and try to learn from them. I am trying to change my reputation (ha-ha). Its taken me years to deal with this exact same issue. ISOP has been banging on doors since 2003 with ET, and 2001 with halo traction……We send the info, pay for postage/materials, only to be flat out ignored! Very frustrating, I know. I have learned not to take any of it personal and just take their lack of response as “not yet or not now,” not the answer “no.” I have also noticed that December in general is a horrible month to ask anyone for anything because everyone is super busy. I would just shoot out another e-mail reminder in January. Thanks for your help. The Ped. Awareness Program is a super important project for 2009. HRH From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of Tasha Fontenot Sent: Thursday, December 11, 2008 7:49 AM To: infantile_scoliosis Subject: RE: Tasha & Thanks . I truly feel God has lead us down this road for a reason. A reason I am not aware of at this time, but I trust in Him and know things will work out for the good......one way or another. Some day. I try to make being positive my only option, but right now I am not feeling very positive. After you posted about ISOP's Pediatrician Awareness Program for 2009, I immediately sent an email out to family and close friends. I sent an email out explaining the importance of this and ask everyone to send me their doc's info. Out of 18 people I have only got 1 response. I am so bummed about it and want to send another out telling how disappointed I am. Not sure if that would go over very well, but what do I do from here. I am SO mad! These are people that knew what went through. And were well aware that his scoliosis was not near as bad as some children/babies face. Anyway I just had to vent. Tasha Mommy of twin boys- and 3 1/2 years old Fort Worth, Texas is currently in a brace at night. Casting 14 months. From: hrhandco <heather@infantilesc oliosis.org> Subject: [infantile_scoliosi s] cast experiences To: infantile_scoliosis @yahoogroups. com Date: Tuesday, December 9, 2008, 1:19 PM Those last posts reminded me of an issue that pops-up on the group a few times a year. And, that is the way strangers respond to seeing our children in plaster casts... My reaction to the way strangers acted after seeing my toddler in a cast was so much better, if they respond positively. In the beginning of Liv's casting experience (age 2.10) I would react horribly, if someone was staring or pointing…..To the point of confrontation (bad, I know.....)! After 5 years of serial casting, my response improved a bit (ha-ha) and I would say something inviting to break the ice, like " cool cast, huh,? " or " want to touch it? " Even the adults would smile and want to learn more. I know many of us have gone through this……… Rochelle & Shara (and a few other members over the years) came up with a good suggestion that would act as an ice breaker and ET/scoliosis awareness tool. ISOP could provide small cards that would explain the ET casting process and the importance of it in simple, brief terms. The info card would include the website addy and would invite the curious to learn more about it. The info card could also put to rest any suspicion strangers may have that your child has been hurt. Honestly, it's happened to us more than once. Some (ignorant) people have been downright rude and mean and I think it's because they suspected I was a neglectful mother and hadn't cared for Olivia properly… Perhaps, she had fallen down the stairs, had a horrible accident, or worse….(?) Have any of you experienced anything similar to this? If so, please share and let me know your recommendations on the info card. Thanks a lot! HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 Thanks ! You have made me feel better about the whole thing.I do take it personally and it is so hard not to.I agree December might be a bad month to get a good response.BUT I will not give up......I'll just keep smashing it in their faces.......just kidding!Have a good evening.TashaMommy of twin boys- and 3 1/2 years oldFort Worth, Texas is currently in a brace at night.Casting 14 months. From: hrhandco <heather@infantilesc oliosis.org> Subject: [infantile_scoliosi s] cast experiences To: infantile_scoliosis @yahoogroups. com Date: Tuesday, December 9, 2008, 1:19 PM Those last posts reminded me of an issue that pops-up on the group a few times a year. And, that is the way strangers respond to seeing our children in plaster casts... My reaction to the way strangers acted after seeing my toddler in a cast was so much better, if they respond positively. In the beginning of Liv's casting experience (age 2.10) I would react horribly, if someone was staring or pointing…..To the point of confrontation (bad, I know.....)! After 5 years of serial casting, my response improved a bit (ha-ha) and I would say something inviting to break the ice, like "cool cast, huh,?" or "want to touch it?" Even the adults would smile and want to learn more. I know many of us have gone through this……… Rochelle & Shara (and a few other members over the years) came up with a good suggestion that would act as an ice breaker and ET/scoliosis awareness tool. ISOP could provide small cards that would explain the ET casting process and the importance of it in simple, brief terms. The info card would include the website addy and would invite the curious to learn more about it. The info card could also put to rest any suspicion strangers may have that your child has been hurt. Honestly, it's happened to us more than once. Some (ignorant) people have been downright rude and mean and I think it's because they suspected I was a neglectful mother and hadn't cared for Olivia properly… Perhaps, she had fallen down the stairs, had a horrible accident, or worse….(?) Have any of you experienced anything similar to this? If so, please share and let me know your recommendations on the info card. Thanks a lot! HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 Thanks ! You have made me feel better about the whole thing.I do take it personally and it is so hard not to.I agree December might be a bad month to get a good response.BUT I will not give up......I'll just keep smashing it in their faces.......just kidding!Have a good evening.TashaMommy of twin boys- and 3 1/2 years oldFort Worth, Texas is currently in a brace at night.Casting 14 months. From: hrhandco <heather@infantilesc oliosis.org> Subject: [infantile_scoliosi s] cast experiences To: infantile_scoliosis @yahoogroups. com Date: Tuesday, December 9, 2008, 1:19 PM Those last posts reminded me of an issue that pops-up on the group a few times a year. And, that is the way strangers respond to seeing our children in plaster casts... My reaction to the way strangers acted after seeing my toddler in a cast was so much better, if they respond positively. In the beginning of Liv's casting experience (age 2.10) I would react horribly, if someone was staring or pointing…..To the point of confrontation (bad, I know.....)! After 5 years of serial casting, my response improved a bit (ha-ha) and I would say something inviting to break the ice, like "cool cast, huh,?" or "want to touch it?" Even the adults would smile and want to learn more. I know many of us have gone through this……… Rochelle & Shara (and a few other members over the years) came up with a good suggestion that would act as an ice breaker and ET/scoliosis awareness tool. ISOP could provide small cards that would explain the ET casting process and the importance of it in simple, brief terms. The info card would include the website addy and would invite the curious to learn more about it. The info card could also put to rest any suspicion strangers may have that your child has been hurt. Honestly, it's happened to us more than once. Some (ignorant) people have been downright rude and mean and I think it's because they suspected I was a neglectful mother and hadn't cared for Olivia properly… Perhaps, she had fallen down the stairs, had a horrible accident, or worse….(?) Have any of you experienced anything similar to this? If so, please share and let me know your recommendations on the info card. Thanks a lot! HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 Hi , I'm in Jersey, too.... Whereabout? Steph From: hrhandco <heather@infantilesc oliosis.org>Subject: [infantile_scoliosi s] cast experiencesTo: infantile_scoliosis @yahoogroups. comDate: Tuesday, December 9, 2008, 1:19 PM Those last posts reminded me of an issue that pops-up on the group afew times a year. And, that is the way strangers respond to seeingour children in plaster casts...My reaction to the way strangers acted after seeing my toddler in acast was so much better, if they respond positively. In the beginningof Liv's casting experience (age 2.10) I would react horribly, ifsomeone was staring or pointing…..To the point of confrontation (bad,I know.....)! After 5 years of serial casting, my response improved abit (ha-ha) and I would say something inviting to break the ice, like"cool cast, huh,?" or "want to touch it?" Even the adults would smileand want to learn more. I know many of us have gone through this……… Rochelle & Shara (and a few other members over the years) came up witha good suggestion that would act as an ice breaker and ET/scoliosisawareness tool. ISOP co uld provide small cards that would explain theET casting process and the importance of it in simple, brief terms. The info card would include the website addy and would invite thecurious to learn more about it. The info card could also put torest any suspicion strangers may have that your child has been hurt. Honestly, it's happened to us more than once. Some (ignorant) peoplehave been downright rude and mean and I think it's because theysuspected I was a neglectful mother and hadn't cared for Oliviaproperly… Perhaps, she had fallen down the stairs, had a horribleaccident, or worse….(?)Have any of you experienced anything similar to this? If so, pleaseshare and let me know your recommendations on the info card.Thanks a lot!HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Hi Tasha, I, too, often feel that my son got scoliosis for a reason. I have met some wonderful people these past several years, and the whole experience has changed me (for the better I think!). I also will talk to ANYBODY and sometimes feel like people are sorry they ever got me started - LOL! I joke that I don't have a shy bone in my body (also a trait I think I developed somewhat from this whole experience - if I have something to say or to ask, I do - the worst someone can say is " no " - a friend once said that to me and I always remember it). Anyway, as far as only getting one response to your e-mail, I find that most people are SO caught up in their own lives. It IS frustrating for sure, but I've experienced similar situations. I think that's what bonds all of us parents - nobody else really " gets " it. Hang in there - we ARE getting the word out, a little at a time. Best regards, > From: hrhandco > <heather@infantilesc oliosis.org> > > Subject: [infantile_scoliosi s] cast experiences > > To: infantile_scoliosis @yahoogroups. com > > Date: Tuesday, December 9, 2008, 1:19 PM > > > Those last posts reminded me of an issue that > pops-up on the group a > > few times a year. And, that is the way strangers respond to seeing > > our children in plaster casts... > > My reaction to the way strangers acted after seeing my toddler in a > > cast was so much better, if they respond positively. In the beginning > > of Liv's casting experience (age 2.10) I would react horribly, if > > someone was staring or pointing…..To the point of confrontation (bad, > > I know.....)! After 5 years of serial casting, my response improved a > > bit (ha-ha) and I would say something inviting to break the ice, like > > " cool cast, huh,? " or " want to touch it? " Even the adults > would smile > > and want to learn more. I know many of us have gone through this……… > > Rochelle & Shara (and a few other members over the years) came up with > > a good suggestion that would act as an ice breaker and ET/scoliosis > > awareness tool. ISOP could provide small cards that would explain the > > ET casting process and the importance of it in simple, brief terms. > > The info card would include the website addy and would invite the > > curious to learn more about it. The info card could also put to > > rest any suspicion strangers may have that your child has been hurt. > > Honestly, it's happened to us more than once. Some (ignorant) people > > have been downright rude and mean and I think it's because they > > suspected I was a neglectful mother and hadn't cared for Olivia > > properly… Perhaps, she had fallen down the stairs, had a horrible > > accident, or worse….(?) > > Have any of you experienced anything similar to this? If so, please > > share and let me know your recommendations on the info card. > > Thanks a lot! > > HRH > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 ,Thanks so much for your kind words. It does make me feel better to know you, and I am sure others, have felt this way.I am trying to not take it personally and just keep spreading the word.That is why I am so thankful for this group. I can come talk/vent and you all know what I am feeling.Have a great Sunday!TashaMommy of twin boys- and 3 1/2 years oldFort Worth, Texas is currently in a brace at night.Casting 14 months.Subject: Re: Tasha & To: infantile_scoliosis Date: Friday, December 12, 2008, 8:51 PM Hi Tasha, I, too, often feel that my son got scoliosis for a reason. I have met some wonderful people these past several years, and the whole experience has changed me (for the better I think!). I also will talk to ANYBODY and sometimes feel like people are sorry they ever got me started - LOL! I joke that I don't have a shy bone in my body (also a trait I think I developed somewhat from this whole experience - if I have something to say or to ask, I do - the worst someone can say is "no" - a friend once said that to me and I always remember it). Anyway, as far as only getting one response to your e-mail, I find that most people are SO caught up in their own lives. It IS frustrating for sure, but I've experienced similar situations. I think that's what bonds all of us parents - nobody else really "gets" it. Hang in there - we ARE getting the word out, a little at a time. Best regards, > From: hrhandco > <heather@infantiles c oliosis.org> > > Subject: [infantile_scoliosi s] cast experiences > > To: infantile_scoliosis @yahoogroups. com > > Date: Tuesday, December 9, 2008, 1:19 PM > > > Those last posts reminded me of an issue that > pops-up on the group a > > few times a year. And, that is the way strangers respond to seeing > > our children in plaster casts... > > My reaction to the way strangers acted after seeing my toddler in a > > cast was so much better, if they respond positively. In the beginning > > of Liv's casting experience (age 2.10) I would react horribly, if > > someone was staring or pointing…..To the point of confrontation (bad, > > I know.....)! After 5 years of serial casting, my response improved a > > bit (ha-ha) and I would say something inviting to break the ice, like > > "cool cast, huh,?" or "want to touch it?" Even the adults > would smile > > and want to learn more. I know many of us have gone through this……… > > Rochelle & Shara (and a few other members over the years) came up with > > a good suggestion that would act as an ice breaker and ET/scoliosis > > awareness tool. ISOP could provide small cards that would explain the > > ET casting process and the importance of it in simple, brief terms. > > The info card would include the website addy and would invite the > > curious to learn more about it. The info card could also put to > > rest any suspicion strangers may have that your child has been hurt. > > Honestly, it's happened to us more than once. Some (ignorant) people > > have been downright rude and mean and I think it's because they > > suspected I was a neglectful mother and hadn't cared for Olivia > > properly… Perhaps, she had fallen down the stairs, had a horrible > > accident, or worse….(?) > > Have any of you experienced anything similar to this? If so, please > > share and let me know your recommendations on the info card. > > Thanks a lot! > > HRH > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Hey Tasha, One more thing - always remember that each time a new parent posts here or joins this group it means that they DID find out about casting - so the word IS getting out about this and other alternative treatment methods - maybe just not as much or as quickly as we'd like :-) Best, > > > From: hrhandco > > > <heather@infantiles c oliosis.org> > > > > > > Subject: [infantile_scoliosi s] cast experiences > > > > > > To: infantile_scoliosis @yahoogroups. com > > > > > > Date: Tuesday, December 9, 2008, 1:19 PM > > > > > > > > > Those last posts reminded me of an issue that > > > pops-up on the group a > > > > > > few times a year. And, that is the way strangers respond to seeing > > > > > > our children in plaster casts... > > > > > > My reaction to the way strangers acted after seeing my toddler in > > a > > > > > > cast was so much better, if they respond positively. In the > > beginning > > > > > > of Liv's casting experience (age 2.10) I would react horribly, if > > > > > > someone was staring or pointing…..To the point of confrontation > > (bad, > > > > > > I know.....)! After 5 years of serial casting, my response > > improved a > > > > > > bit (ha-ha) and I would say something inviting to break the ice, > > like > > > > > > " cool cast, huh,? " or " want to touch it? " Even the adults > > > would smile > > > > > > and want to learn more. I know many of us have gone through > > this……… > > > > > > Rochelle & Shara (and a few other members over the years) came up > > with > > > > > > a good suggestion that would act as an ice breaker and > > ET/scoliosis > > > > > > awareness tool. ISOP could provide small cards that would explain > > the > > > > > > ET casting process and the importance of it in simple, brief > > terms. > > > > > > The info card would include the website addy and would invite the > > > > > > curious to learn more about it. The info card could also put to > > > > > > rest any suspicion strangers may have that your child has been > > hurt. > > > > > > Honestly, it's happened to us more than once. Some (ignorant) > > people > > > > > > have been downright rude and mean and I think it's because they > > > > > > suspected I was a neglectful mother and hadn't cared for Olivia > > > > > > properly… Perhaps, she had fallen down the stairs, had a horrible > > > > > > accident, or worse….(?) > > > > > > Have any of you experienced anything similar to this? If so, > > please > > > > > > share and let me know your recommendations on the info card. > > > > > > Thanks a lot! > > > > > > HRH > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 That is so true! I am a newbie here, and I have to say, it didn't take much searching to find out about ISOP and this awesome yahoo group. The day after we got our diagnosis, I was all over the internet looking for resources, and these kept popping up everywhere! However, I know that not everyone has access or knowledge when it comes to technology, so having a front line of awarenes (i.e. pediatricians) is amazing. But everything you guys are working so hard for is definitely paying off...I am a perfect example of this. I cannot tell you guys how thankful I am that you all are here to answer my questions, refer me to resources and just walk with me down this path. I am confidently prepared for whatever we will be dealing with in the immediate future, in large part because of ya'll! > > > > > From: hrhandco > > > > > <heather@infantiles c oliosis.org> > > > > > > > > > > Subject: [infantile_scoliosi s] cast experiences > > > > > > > > > > To: infantile_scoliosis @yahoogroups. com > > > > > > > > > > Date: Tuesday, December 9, 2008, 1:19 PM > > > > > > > > > > > > > > > Those last posts reminded me of an issue that > > > > > pops-up on the group a > > > > > > > > > > few times a year. And, that is the way strangers respond to > seeing > > > > > > > > > > our children in plaster casts... > > > > > > > > > > My reaction to the way strangers acted after seeing my toddler > in > > > > a > > > > > > > > > > cast was so much better, if they respond positively. In the > > > > beginning > > > > > > > > > > of Liv's casting experience (age 2.10) I would react horribly, > if > > > > > > > > > > someone was staring or pointing…..To the point of confrontation > > > > (bad, > > > > > > > > > > I know.....)! After 5 years of serial casting, my response > > > > improved a > > > > > > > > > > bit (ha-ha) and I would say something inviting to break the > ice, > > > > like > > > > > > > > > > " cool cast, huh,? " or " want to touch it? " Even the adults > > > > > would smile > > > > > > > > > > and want to learn more. I know many of us have gone through > > > > this……… > > > > > > > > > > Rochelle & Shara (and a few other members over the years) came > up > > > > with > > > > > > > > > > a good suggestion that would act as an ice breaker and > > > > ET/scoliosis > > > > > > > > > > awareness tool. ISOP could provide small cards that would > explain > > > > the > > > > > > > > > > ET casting process and the importance of it in simple, brief > > > > terms. > > > > > > > > > > The info card would include the website addy and would invite > the > > > > > > > > > > curious to learn more about it. The info card could also put to > > > > > > > > > > rest any suspicion strangers may have that your child has been > > > > hurt. > > > > > > > > > > Honestly, it's happened to us more than once. Some (ignorant) > > > > people > > > > > > > > > > have been downright rude and mean and I think it's because they > > > > > > > > > > suspected I was a neglectful mother and hadn't cared for Olivia > > > > > > > > > > properly… Perhaps, she had fallen down the stairs, had a > horrible > > > > > > > > > > accident, or worse….(?) > > > > > > > > > > Have any of you experienced anything similar to this? If so, > > > > please > > > > > > > > > > share and let me know your recommendations on the info card. > > > > > > > > > > Thanks a lot! > > > > > > > > > > HRH > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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