Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Now that Jack is home I have had to take him out a little to go to the doctors and get medicine etc. I try not to go anywhere because of RSV. It is running wild here! Thankfully he got his Synergist vaccine today. Anyway, on several occasions people have made comments about Jack's Charge ear. He has one " normal " ear and one charge ear that really sticks out. These people have said things like " it's nothing plastic surgery can't fix " and " you know, they reconstruct ears all the time " . Being new to this whole thing I haven't had time to think about how to respond to a comment like this. How can people be so rude? I believe that Jack's ear is a part of who he is and that there is nothing wrong with it! If someday Jack decides he wants to have something done then I will fully support him but I hope to raise him to be proud of who he is and accept the beautiful gifts that God has given him. Right now I just don't know how to respond to these people. I want to just yell and ask what is wrong with them but I'm not that kind of person. Does anyone have any good one liners that I can steal? I want to be polite but still get the message across that my baby is perfect in my eyes. Another question, within the CHARGE acronym R stands for retardation of growth and development. Is this ever officially diagnosed? Jack is almost 4 months old and is 7 pounds 12 ounces and doesn't do anything a " normal " 4 month old baby would do. I would say that he has the R but no doctor has ever told us that. So, should we include the R or not? I just never know. Mom to Jack, almost 4 months with CHARGE __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 , I happen to agree with you that Jack is perfect just as he is created. In my opinion, I would think that the people are trying to let you know they aren't bothered by the ear. I don't think they are necessarily rude, but I didn't hear the tone or intent of their words. You certainly know best about that. Some people do interject comments whether they are welcome or not. I suspect they just didn't quite know what to say and were trying to encourage you not to be discouraged. But, you are all fine and good with Jack as he is, so their comments were not necessary. I think my approach would be to use some of the words you just mentioned yourself. I would look the person in the eye, smile gently, and say softly or (maybe loudly) depending on the circumstance: " My baby is completely perfect in my eyes " . Or, " My baby is completely perfect in God's eyes " . That's it. I would feel good having let them know that the ear is not an issue that needs discussing. I think you came up with REALLY excellent words. Then I would go on my way knowing I had said exactly what needed to be said. Best to you and your sweet Jack. Mom to Kendra, CHARGE, and Camille Rude Comments Now that Jack is home I have had to take him out a little to go to the doctors and get medicine etc. I try not to go anywhere because of RSV. It is running wild here! Thankfully he got his Synergist vaccine today. Anyway, on several occasions people have made comments about Jack's Charge ear. He has one " normal " ear and one charge ear that really sticks out. These people have said things like " it's nothing plastic surgery can't fix " and " you know, they reconstruct ears all the time " . Being new to this whole thing I haven't had time to think about how to respond to a comment like this. How can people be so rude? I believe that Jack's ear is a part of who he is and that there is nothing wrong with it! If someday Jack decides he wants to have something done then I will fully support him but I hope to raise him to be proud of who he is and accept the beautiful gifts that God has given him. Right now I just don't know how to respond to these people. I want to just yell and ask what is wrong with them but I'm not that kind of person. Does anyone have any good one liners that I can steal? I want to be polite but still get the message across that my baby is perfect in my eyes. Another question, within the CHARGE acronym R stands for retardation of growth and development. Is this ever officially diagnosed? Jack is almost 4 months old and is 7 pounds 12 ounces and doesn't do anything a " normal " 4 month old baby would do. I would say that he has the R but no doctor has ever told us that. So, should we include the R or not? I just never know. Mom to Jack, almost 4 months with CHARGE __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Hi , I was going to say everything said so I'll just say ditto! Janay Rasha's Mom > > , > > I happen to agree with you that Jack is perfect just as he is created. > > In my opinion, I would think that the people are trying to let you know they aren't bothered by the ear. I don't think they are necessarily rude, but I didn't hear the tone or intent of their words. You certainly know best about that. Some people do interject comments whether they are welcome or not. I suspect they just didn't quite know what to say and were trying to encourage you not to be discouraged. But, you are all fine and good with Jack as he is, so their comments were not necessary. > > I think my approach would be to use some of the words you just mentioned yourself. I would look the person in the eye, smile gently, and say softly or (maybe loudly) depending on the circumstance: " My baby is completely perfect in my eyes " . Or, " My baby is completely perfect in God's eyes " . > > That's it. I would feel good having let them know that the ear is not an issue that needs discussing. I think you came up with REALLY excellent words. Then I would go on my way knowing I had said exactly what needed to be said. > > Best to you and your sweet Jack. > > > Mom to Kendra, CHARGE, and Camille > Rude Comments > > > Now that Jack is home I have had to take him out a little to go to the doctors and get medicine etc. I try not to go anywhere because of RSV. It is running wild here! Thankfully he got his Synergist vaccine today. Anyway, on several occasions people have made comments about Jack's Charge ear. He has one " normal " ear and one charge ear that really sticks out. These people have said things like " it's nothing plastic surgery can't fix " and " you know, they reconstruct ears all the time " . Being new to this whole thing I haven't had time to think about how to respond to a comment like this. How can people be so rude? I believe that Jack's ear is a part of who he is and that there is nothing wrong with it! If someday Jack decides he wants to have something done then I will fully support him but I hope to raise him to be proud of who he is and accept the beautiful gifts that God has given him. Right now I just don't know how to respond to these people. I want to just > yell and ask what is wrong with them but I'm not that kind of person. Does anyone have any good one liners that I can steal? I want to be polite but still get the message across that my baby is perfect in my eyes. > > Another question, within the CHARGE acronym R stands for retardation of growth and development. Is this ever officially diagnosed? Jack is almost 4 months old and is 7 pounds 12 ounces and doesn't do anything a " normal " 4 month old baby would do. I would say that he has the R but no doctor has ever told us that. So, should we include the R or not? I just never know. > > > Mom to Jack, almost 4 months with CHARGE > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Hi , I don't know if you feel like taking the time to give this explanation, but even if you requested plastic surgery for Jack's ear at this time--if it is strictly for cosmetic reasons--I think the Drs would try to defer it as long as possible. If there are functional issues involved--like there is absolutely no way it will hold a hearing aide, and that's the side that needs it--the considerations are different. I tend to not respond back to rudeness with a " zinger " --mostly because I don't think fast enough, but also I don't believe it accomplishes anything positive. Most of the time, the person making this type of comment doesn't have any malicious intent--they are just ignorant. And an ignorant moment is a perfect opportunity to provide a little education. You never know--your newly educated aquantance might spread the word and head off similar comments from others... Although it's true that a baby's head is the part of the body closest to it's adult size...it's still growing. Future growth is a huge concern for any type of surgery, but especially a cosmetic one. If they repair his ear to look " right " now, once he is bigger it may not have the proper proportions...this may require additional surgery (and I would imagine this is like most surgeries--it will look best if they can limit the number of procedures, and scar tissue formation). Evan has a " bendy " ear that sticks out, and a more " normal " looking ear. We are lucky that the " bendy ear " is strong enough to hold his hearing aide. I remember when he was first born, his strange looking little ears bothered me immensely--I worried that would be the first thing people would see. But now they are just part of Evan, and I almost have a hard time imagining him without his " bendy ear. " I feel kind of silly sharing this (although if anyone is going to understand, it's fellow CHARGE parents!), but one of the places Evan gets lots of kisses is behind his " bendy ear " --he gives his half-smile and tilts his head to that side as if he's saying " Come on Mom--that tickles! " I'm going to miss that someday! I want to wait as long as we can to do any plastic surgery--for the same reasons you do. Partly because I want him to know that we love him unconditionally--regardless of his ears! And partly because I want the plastic surgery to be something he actively participates in deciding--we've had enough surgeries where his father and I have had to have " done to " him. As far as the " R " --Jack qualifies. I think pretty much every CHARGE kiddo does. (mom to Evan, ChaRG and E--proudly, nearly 18 months old now) Waggoner wrote: Now that Jack is home I have had to take him out a little to go to the doctors and get medicine etc. I try not to go anywhere because of RSV. It is running wild here! Thankfully he got his Synergist vaccine today. Anyway, on several occasions people have made comments about Jack's Charge ear. He has one " normal " ear and one charge ear that really sticks out. These people have said things like " it's nothing plastic surgery can't fix " and " you know, they reconstruct ears all the time " . Being new to this whole thing I haven't had time to think about how to respond to a comment like this. How can people be so rude? I believe that Jack's ear is a part of who he is and that there is nothing wrong with it! If someday Jack decides he wants to have something done then I will fully support him but I hope to raise him to be proud of who he is and accept the beautiful gifts that God has given him. Right now I just don't know how to respond to these people. I want to just yell and ask what is wrong with them but I'm not that kind of person. Does anyone have any good one liners that I can steal? I want to be polite but still get the message across that my baby is perfect in my eyes. Another question, within the CHARGE acronym R stands for retardation of growth and development. Is this ever officially diagnosed? Jack is almost 4 months old and is 7 pounds 12 ounces and doesn't do anything a " normal " 4 month old baby would do. I would say that he has the R but no doctor has ever told us that. So, should we include the R or not? I just never know. Mom to Jack, almost 4 months with CHARGE __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 " I believe that Jack's ear is a part of who he is and that there is nothing wrong with it! If someday Jack decides he wants to have something done then I will fully support him but I hope to raise him to be proud of who he is and accept the beautiful gifts that God has given him. " Please keep this belief! That is what we believe as well. I am glad to hear that you accept your child a 100% and that is how you will learn to deal with these rude comments. Remember people are ignorant to CHARGE and if they have never had to deal with this, they don't know how to respond. I tell people just that, God made him perfect and I don't see why I would change my beautiful blessing! Keep your chin up and you will do GREAT! , Randy & Garland Goodwin ---- Waggoner wrote: ============= Now that Jack is home I have had to take him out a little to go to the doctors and get medicine etc. I try not to go anywhere because of RSV. It is running wild here! Thankfully he got his Synergist vaccine today. Anyway, on several occasions people have made comments about Jack's Charge ear. He has one " normal " ear and one charge ear that really sticks out. These people have said things like " it's nothing plastic surgery can't fix " and " you know, they reconstruct ears all the time " . Being new to this whole thing I haven't had time to think about how to respond to a comment like this. How can people be so rude? I believe that Jack's ear is a part of who he is and that there is nothing wrong with it! If someday Jack decides he wants to have something done then I will fully support him but I hope to raise him to be proud of who he is and accept the beautiful gifts that God has given him. Right now I just don't know how to respond to these people. I want to just yell and ask what is wrong with them but I'm not that kind of person. Does anyone have any good one liners that I can steal? I want to be polite but still get the message across that my baby is perfect in my eyes. Another question, within the CHARGE acronym R stands for retardation of growth and development. Is this ever officially diagnosed? Jack is almost 4 months old and is 7 pounds 12 ounces and doesn't do anything a " normal " 4 month old baby would do. I would say that he has the R but no doctor has ever told us that. So, should we include the R or not? I just never know. Mom to Jack, almost 4 months with CHARGE __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 , Some of the 'old' folks here know this story but it hopefully will give you an idea how some CHARGE kids handle the comments. was about 9yo when he went to a crainial-facial clinic appt, when it came to the ENT guys one resident said he HAD to have his ear fixed " NOW " ( he has one 'normal' and one CHARGE ear) I told him that the plastics guy had said to wait til he was fully grown for the effect to be the best. The guy just kept going on and on about it.. So finally he talks straight to and says " Don't you want to look like the other kids? " looks the guy up and down and says " It doesn't bother me why does it bother you? " The others in the room that had known since birth cracked up.. the guy looked soooooo embarassed. is so OK with his looks and most everything that goes one with CHARGE that sometimes I just forget he has it. It will be OK and believe me Jake and your family will learn to handle it, from the intrigued and wanting to learn type and the really obnoxious and rude types. Casey Mom to Dawn 28 HH, ADD, Bi-polar, Ken 17 ADD, Dysgraphic and 15 in three weeks CHARGE __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 casey liek that y did it bother him maybe he thought was some infection > > , > > Some of the 'old' folks here know this story but it hopefully will give > you an idea how some CHARGE kids handle the comments. was about 9yo > when he went to a crainial-facial clinic appt, when it came to the ENT guys > one resident said he HAD to have his ear fixed " NOW " ( he has one 'normal' > and one CHARGE ear) I told him that the plastics guy had said to wait til he > was fully grown for the effect to be the best. The guy just kept going on > and on about it.. So finally he talks straight to and says " Don't you > want to look like the other kids? " looks the guy up and down and says > " It doesn't bother me why does it bother you? " The others in the room that > had known since birth cracked up.. the guy looked soooooo embarassed. > is so OK with his looks and most everything that goes one with CHARGE > that sometimes I just forget he has it. > > It will be OK and believe me Jake and your family will learn to handle it, > from the intrigued and wanting to learn type and the really obnoxious and > rude types. > > Casey > Mom to Dawn 28 HH, ADD, Bi-polar, Ken 17 ADD, Dysgraphic and 15 in > three weeks CHARGE > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 , The " R " in CHARGE is a problem. In fact, there are a number of professionals who wish the acronym had never been developed. Back when Hall first noticed that a number of anomalies seemed to being appearing together with a frequency greater than chance, and went back through his files, the cases that were identified were what you might call " severe " CHARGE. These were the obvious cases. Today we recognize that the variability in CHARGE is huge. I heard about a woman with the CHARGE gene who only has balance difficulties - nothing more. The problem with the " R " when it referred to both growth and developmental issues is that it lowered expectations for kids with CHARGE. I heard many times that professionals told parents " your child will be mentally retarded. " In fact, this is not necessarily the case. I tell people to expect low normal intelligence, which translates into an IQ range of 70-85. It may well be much higher or it could, as in the case of my own son, be much lower. There are some really smart kids with CHARGE, as represented by those who are on this list. So never presume cognitive impairment, although it is a possibility. Slow development of normal milestones is not necessarily due to low IQ. Our kids are often hypotonic, they have balance difficulties, they have sensory impairments - all of these things can lead to delays in making developmental motor and other milestones. Of course your child is who he or she is. That will play out in time. In the meantime, keep doing what you can to provide appropriate services and enjoy your child. Tim Hartshorne S. Hartshorne Professor of Psychology Sloan Hall 215 Central Michigan University Mount Pleasant, MI 48859 (989)774-6479 office (989)774-2553 fax tim.hartshorne@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Hi, : My son with CHARGE is 11 years old, so I've had plenty of time to come up with one-liners. Plus, my family says that coming up with " in- your-face " one-liners is my rare talent! So here goes... hope I don't offend. Please just take these lightly...or if you just want to imagine these responses but not really say them, they might give you a private giggle... To people who suggest that Jack's ear can be fixed, you might say: 1) Yes, if he lives through another open-heart surgery, the upcoming subaortic stenosis repair, we might look into that. (wow them with big words) 2) Well, they gave us a choice between heart surgery to save his life, or plastic surgery to make him pretty - we chose life. 3) What are you talking about? We had that ear made special!! It's the latest fad!! 4) Yes, but you see, we are auditioning him for the Lord of the Rings. 5) Well, we are of the mindset that God doesn't make mistakes. What do you think? 6) Do you have any idea how many times I've heard that? Believe me, we have plenty of other things to worry about right now. 7) We are suffering enough without comments like that, thank you. 8) No speaka English. 9) (act like you had not noticed) What??? Oh, my God!! Honey, what happened to your ear?? Someone call 911, quick!!!! 10) (flick your child's ear and say, very casually) Well, you get what you get and you don't throw a fit. 11) I tell him all the time if he keeps telling lies his ear will continue to grow out like that, but he just doesn't listen. 12) You know, he can hear you. 13) (or if he can't hear, pretend that you can't either and start signing to the person, pointing to their nose and making gestures that imply how big it is, start laughing uproariously, then walk away shaking your head) 14) Oh, are we pointing out each other's flaws now? 15) You know they also have surgeries available to fix your face. 16) Yes, he's a rather funny-looking little guy. I'm thinking of trading him in for a different model? You interested? Hope these inspire you <smile>... and remember, you are NOT alone! Rosie Mom to Neal (CHARGE-11yrs) and -marie (6 years) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 : It took me a while to start using the R. No doctor has ever put the R in there. When my son Neal was very young (he's now 11 years), I was very defensive about the R, maintaining that he was NOT retarded. At the time, it was thought more that it had to do with mental retardation. But, he is pretty significantly developmentally delayed, and that has become more obvious as he's gotten older. Academically, he's doing pretty well catching up, but socially and emotionally, he's way behind his 6-year old sister. Rosie > > Now that Jack is home I have had to take him out a little to go to the doctors and get medicine etc. I try not to go anywhere because of RSV. It is running wild here! Thankfully he got his Synergist vaccine today. Anyway, on several occasions people have made comments about Jack's Charge ear. He has one " normal " ear and one charge ear that really sticks out. These people have said things like " it's nothing plastic surgery can't fix " and " you know, they reconstruct ears all the time " . Being new to this whole thing I haven't had time to think about how to respond to a comment like this. How can people be so rude? I believe that Jack's ear is a part of who he is and that there is nothing wrong with it! If someday Jack decides he wants to have something done then I will fully support him but I hope to raise him to be proud of who he is and accept the beautiful gifts that God has given him. Right now I just don't know how to respond to these people. I want to just > yell and ask what is wrong with them but I'm not that kind of person. Does anyone have any good one liners that I can steal? I want to be polite but still get the message across that my baby is perfect in my eyes. > > Another question, within the CHARGE acronym R stands for retardation of growth and development. Is this ever officially diagnosed? Jack is almost 4 months old and is 7 pounds 12 ounces and doesn't do anything a " normal " 4 month old baby would do. I would say that he has the R but no doctor has ever told us that. So, should we include the R or not? I just never know. > > > Mom to Jack, almost 4 months with CHARGE > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Oh, to be audacious enough, just once, to use #15. That would tide me over for a long time. lol. in Ma. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 , Eva also has one " normal " ear and one CHARGE ear. I happen to love her little CHARGE ear and I think its what make her, her. We do have a plastics doctor who has been watching her palete and her jaw but he did mention that he could fix her ear and make it more " normal " when she is about 6 or 7. But I dont know if i really want to do that. Her ear is what makes her Eva, the only way I would concider it is if it will help her with her aid or glasses in anyway. But right now its all ok. When people say anything about her ear I take that as my que to tell them about CHARGE and I always smile about it, I think she was given to me the way she was to help get more info out there about CHARGE and other special needs. As for the retarded growth, Eva is 21 months old and is only 19lbs 8oz and 29 1/2 inches long. She doesnt sit, stand, crawl, walk or do much of anything an child her age would do. But since her open heart surgery last April I have seen a huge amount of energy coming from her and I think this is the year we since some great milestones from her. Is Jack in a therapy program yet? If not I would look into it, Eva's 0-3 year program has helped so much and she has done so much since they started with her. Hang in there!! Crystal mom to (11), (3), and Eva (21 month old CHARGEr) wife to Dan in Illinois > > Now that Jack is home I have had to take him out a little to go to the doctors and get medicine etc. I try not to go anywhere because of RSV. It is running wild here! Thankfully he got his Synergist vaccine today. Anyway, on several occasions people have made comments about Jack's Charge ear. He has one " normal " ear and one charge ear that really sticks out. These people have said things like " it's nothing plastic surgery can't fix " and " you know, they reconstruct ears all the time " . Being new to this whole thing I haven't had time to think about how to respond to a comment like this. How can people be so rude? I believe that Jack's ear is a part of who he is and that there is nothing wrong with it! If someday Jack decides he wants to have something done then I will fully support him but I hope to raise him to be proud of who he is and accept the beautiful gifts that God has given him. Right now I just don't know how to respond to these people. I want to just > yell and ask what is wrong with them but I'm not that kind of person. Does anyone have any good one liners that I can steal? I want to be polite but still get the message across that my baby is perfect in my eyes. > > Another question, within the CHARGE acronym R stands for retardation of growth and development. Is this ever officially diagnosed? Jack is almost 4 months old and is 7 pounds 12 ounces and doesn't do anything a " normal " 4 month old baby would do. I would say that he has the R but no doctor has ever told us that. So, should we include the R or not? I just never know. > > > Mom to Jack, almost 4 months with CHARGE > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Rosie- Although I agree with the approach of taking " rude " comments as an educational opportunity and assuming the intent was ignorance rather than mean-spiritedness, I must say that I got a giggle out of those zingers! I'd probably never say them - unless someone was really being mean - but they are funny. It's humor that only we can appreciate. You do have a talent! I think you sit beside the other Rosie on the View and give my morning a great start! Michele W Aubrie's mom 9 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Rosie, You gave me a MUCH needed laugh. With our cleft repair a week away ,everyone in the house sick,and just plain having four kids, two of them CHARGErs, I'm a ball of stress. Laughter is the best medicine...thank you. So glad I just got back on the list:) Tate has, as our six year old son desciribed them, " Yoda " ears so I may just try some of these out! Blessings, Corrie mom to Peyton10(CHARGE),Cy 7, (4) and Tate(CHARGE w/ about the " CHARGEiest " ears you've seen:) > > Hi, : > My son with CHARGE is 11 years old, so I've had plenty of time to > come up with one-liners. Plus, my family says that coming up with " in- > your-face " one-liners is my rare talent! So here goes... hope I don't > offend. Please just take these lightly...or if you just want to > imagine these responses but not really say them, they might give you > a private giggle... > > To people who suggest that Jack's ear can be fixed, you might say: > > 1) Yes, if he lives through another open-heart surgery, the upcoming > subaortic stenosis repair, we might look into that. (wow them with > big words) > > 2) Well, they gave us a choice between heart surgery to save his > life, or plastic surgery to make him pretty - we chose life. > > 3) What are you talking about? We had that ear made special!! It's > the latest fad!! > > 4) Yes, but you see, we are auditioning him for the Lord of the Rings. > > 5) Well, we are of the mindset that God doesn't make mistakes. What > do you think? > > 6) Do you have any idea how many times I've heard that? Believe me, > we have plenty of other things to worry about right now. > > 7) We are suffering enough without comments like that, thank you. > > 8) No speaka English. > > 9) (act like you had not noticed) What??? Oh, my God!! Honey, what > happened to your ear?? Someone call 911, quick!!!! > > 10) (flick your child's ear and say, very casually) Well, you get > what you get and you don't throw a fit. > > 11) I tell him all the time if he keeps telling lies his ear will > continue to grow out like that, but he just doesn't listen. > > 12) You know, he can hear you. > > 13) (or if he can't hear, pretend that you can't either and start > signing to the person, pointing to their nose and making gestures > that imply how big it is, start laughing uproariously, then walk away > shaking your head) > > 14) Oh, are we pointing out each other's flaws now? > > 15) You know they also have surgeries available to fix your face. > > 16) Yes, he's a rather funny-looking little guy. I'm thinking of > trading him in for a different model? You interested? > > Hope these inspire you <smile>... and remember, you are NOT alone! > > Rosie > Mom to Neal (CHARGE-11yrs) and -marie (6 years) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Oh how I needed this this morning! Last night I came up with a lot of inappropriate responses with really bad words in them but I like yours much better. I like to go with the shock value so I'll keep #1 in mind at all times! Lori Myers Re: Rude Comments Hi, : My son with CHARGE is 11 years old, so I've had plenty of time to come up with one-liners. Plus, my family says that coming up with " in- your-face " one-liners is my rare talent! So here goes... hope I don't offend. Please just take these lightly...or if you just want to imagine these responses but not really say them, they might give you a private giggle... To people who suggest that Jack's ear can be fixed, you might say: 1) Yes, if he lives through another open-heart surgery, the upcoming subaortic stenosis repair, we might look into that. (wow them with big words) 2) Well, they gave us a choice between heart surgery to save his life, or plastic surgery to make him pretty - we chose life. 3) What are you talking about? We had that ear made special!! It's the latest fad!! 4) Yes, but you see, we are auditioning him for the Lord of the Rings. 5) Well, we are of the mindset that God doesn't make mistakes. What do you think? 6) Do you have any idea how many times I've heard that? Believe me, we have plenty of other things to worry about right now. 7) We are suffering enough without comments like that, thank you. 8) No speaka English. 9) (act like you had not noticed) What??? Oh, my God!! Honey, what happened to your ear?? Someone call 911, quick!!!! 10) (flick your child's ear and say, very casually) Well, you get what you get and you don't throw a fit. 11) I tell him all the time if he keeps telling lies his ear will continue to grow out like that, but he just doesn't listen. 12) You know, he can hear you. 13) (or if he can't hear, pretend that you can't either and start signing to the person, pointing to their nose and making gestures that imply how big it is, start laughing uproariously, then walk away shaking your head) 14) Oh, are we pointing out each other's flaws now? 15) You know they also have surgeries available to fix your face. 16) Yes, he's a rather funny-looking little guy. I'm thinking of trading him in for a different model? You interested? Hope these inspire you <smile>... and remember, you are NOT alone! Rosie Mom to Neal (CHARGE-11yrs) and -marie (6 years) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Okay, number three is great too. Maybe I should read them all before I respond... , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 9 years! -- Re: Re: Rude Comments Oh how I needed this this morning! Last night I came up with a lot of inappropriate responses with really bad words in them but I like yours much better. I like to go with the shock value so I'll keep #1 in mind at all times! Lori Myers Re: Rude Comments Hi, : My son with CHARGE is 11 years old, so I've had plenty of time to come up with one-liners. Plus, my family says that coming up with " in- your-face " one-liners is my rare talent! So here goes... hope I don't offend. Please just take these lightly...or if you just want to imagine these responses but not really say them, they might give you a private giggle... To people who suggest that Jack's ear can be fixed, you might say: 1) Yes, if he lives through another open-heart surgery, the upcoming subaortic stenosis repair, we might look into that. (wow them with big words) 2) Well, they gave us a choice between heart surgery to save his life, or plastic surgery to make him pretty - we chose life. 3) What are you talking about? We had that ear made special!! It's the latest fad!! 4) Yes, but you see, we are auditioning him for the Lord of the Rings. 5) Well, we are of the mindset that God doesn't make mistakes. What do you think? 6) Do you have any idea how many times I've heard that? Believe me, we have plenty of other things to worry about right now. 7) We are suffering enough without comments like that, thank you. 8) No speaka English. 9) (act like you had not noticed) What??? Oh, my God!! Honey, what happened to your ear?? Someone call 911, quick!!!! 10) (flick your child's ear and say, very casually) Well, you get what you get and you don't throw a fit. 11) I tell him all the time if he keeps telling lies his ear will continue to grow out like that, but he just doesn't listen. 12) You know, he can hear you. 13) (or if he can't hear, pretend that you can't either and start signing to the person, pointing to their nose and making gestures that imply how big it is, start laughing uproariously, then walk away shaking your head) 14) Oh, are we pointing out each other's flaws now? 15) You know they also have surgeries available to fix your face. 16) Yes, he's a rather funny-looking little guy. I'm thinking of trading him in for a different model? You interested? Hope these inspire you <smile>... and remember, you are NOT alone! Rosie Mom to Neal (CHARGE-11yrs) and -marie (6 years) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 My vote is number 2! I LOVE that one!! , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 9 years! -- Re: Re: Rude Comments Oh how I needed this this morning! Last night I came up with a lot of inappropriate responses with really bad words in them but I like yours much better. I like to go with the shock value so I'll keep #1 in mind at all times! Lori Myers Re: Rude Comments Hi, : My son with CHARGE is 11 years old, so I've had plenty of time to come up with one-liners. Plus, my family says that coming up with " in- your-face " one-liners is my rare talent! So here goes... hope I don't offend. Please just take these lightly...or if you just want to imagine these responses but not really say them, they might give you a private giggle... To people who suggest that Jack's ear can be fixed, you might say: 1) Yes, if he lives through another open-heart surgery, the upcoming subaortic stenosis repair, we might look into that. (wow them with big words) 2) Well, they gave us a choice between heart surgery to save his life, or plastic surgery to make him pretty - we chose life. 3) What are you talking about? We had that ear made special!! It's the latest fad!! 4) Yes, but you see, we are auditioning him for the Lord of the Rings. 5) Well, we are of the mindset that God doesn't make mistakes. What do you think? 6) Do you have any idea how many times I've heard that? Believe me, we have plenty of other things to worry about right now. 7) We are suffering enough without comments like that, thank you. 8) No speaka English. 9) (act like you had not noticed) What??? Oh, my God!! Honey, what happened to your ear?? Someone call 911, quick!!!! 10) (flick your child's ear and say, very casually) Well, you get what you get and you don't throw a fit. 11) I tell him all the time if he keeps telling lies his ear will continue to grow out like that, but he just doesn't listen. 12) You know, he can hear you. 13) (or if he can't hear, pretend that you can't either and start signing to the person, pointing to their nose and making gestures that imply how big it is, start laughing uproariously, then walk away shaking your head) 14) Oh, are we pointing out each other's flaws now? 15) You know they also have surgeries available to fix your face. 16) Yes, he's a rather funny-looking little guy. I'm thinking of trading him in for a different model? You interested? Hope these inspire you <smile>... and remember, you are NOT alone! Rosie Mom to Neal (CHARGE-11yrs) and -marie (6 years) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Oh MY GOD ROSIE!! Those are so funny!!! Thanks for sharing!! Crystal mom to (11), (3) and Eva 21 month old CHARGEr) wife to Dan in Illinois > > Hi, : > My son with CHARGE is 11 years old, so I've had plenty of time to > come up with one-liners. Plus, my family says that coming up with " in- > your-face " one-liners is my rare talent! So here goes... hope I don't > offend. Please just take these lightly...or if you just want to > imagine these responses but not really say them, they might give you > a private giggle... > > To people who suggest that Jack's ear can be fixed, you might say: > > 1) Yes, if he lives through another open-heart surgery, the upcoming > subaortic stenosis repair, we might look into that. (wow them with > big words) > > 2) Well, they gave us a choice between heart surgery to save his > life, or plastic surgery to make him pretty - we chose life. > > 3) What are you talking about? We had that ear made special!! It's > the latest fad!! > > 4) Yes, but you see, we are auditioning him for the Lord of the Rings. > > 5) Well, we are of the mindset that God doesn't make mistakes. What > do you think? > > 6) Do you have any idea how many times I've heard that? Believe me, > we have plenty of other things to worry about right now. > > 7) We are suffering enough without comments like that, thank you. > > 8) No speaka English. > > 9) (act like you had not noticed) What??? Oh, my God!! Honey, what > happened to your ear?? Someone call 911, quick!!!! > > 10) (flick your child's ear and say, very casually) Well, you get > what you get and you don't throw a fit. > > 11) I tell him all the time if he keeps telling lies his ear will > continue to grow out like that, but he just doesn't listen. > > 12) You know, he can hear you. > > 13) (or if he can't hear, pretend that you can't either and start > signing to the person, pointing to their nose and making gestures > that imply how big it is, start laughing uproariously, then walk away > shaking your head) > > 14) Oh, are we pointing out each other's flaws now? > > 15) You know they also have surgeries available to fix your face. > > 16) Yes, he's a rather funny-looking little guy. I'm thinking of > trading him in for a different model? You interested? > > Hope these inspire you <smile>... and remember, you are NOT alone! > > Rosie > Mom to Neal (CHARGE-11yrs) and -marie (6 years) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 Hello Tim I have heard these explanations before regarding the retardation in development, which only make sense since many of these babies are in the hospital, having surgeries and are sedated, for many months in their early development months and years. What I am wondering is really the " brain abnormalities " that happen in CHARGE, is this what really accounts for the mental retardation " in some children? What I mean is abnormalities seen by MRI, such as " small brain " or " polymicrogyria " , etc..? Thank you, Liz -- Re:Rude Comments , The " R " in CHARGE is a problem. In fact, there are a number of professionals who wish the acronym had never been developed. Back when Hall first noticed that a number of anomalies seemed to being appearing together with a frequency greater than chance, and went back through his files, the cases that were identified were what you might call " severe " CHARGE. These were the obvious cases. Today we recognize that the variability in CHARGE is huge. I heard about a woman with the CHARGE gene who only has balance difficulties - nothing more. The problem with the " R " when it referred to both growth and developmental issues is that it lowered expectations for kids with CHARGE. I heard many times that professionals told parents " your child will be mentally retarded. " In fact, this is not necessarily the case. I tell people to expect low normal intelligence, which translates into an IQ range of 70-85. It may well be much higher or it could, as in the case of my own son, be much lower. There are some really smart kids with CHARGE, as represented by those who are on this list. So never presume cognitive impairment, although it is a possibility. Slow development of normal milestones is not necessarily due to low IQ. Our kids are often hypotonic, they have balance difficulties, they have sensory impairments - all of these things can lead to delays in making developmental motor and other milestones. Of course your child is who he or she is. That will play out in time. In the meantime, keep doing what you can to provide appropriate services and enjoy your child. Tim Hartshorne S. Hartshorne Professor of Psychology Sloan Hall 215 Central Michigan University Mount Pleasant, MI 48859 (989)774-6479 office (989)774-2553 fax tim.hartshorne@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2007 Report Share Posted January 9, 2007 corrie, good luck with the surgery and hope everyone feels better. my friend's son just got back from the dr. w/ strep and another person's kid has strep--I'm hoping it doesn't hit us. I think tate's ears are adorable! maria, mom to timmy 11 ChARGE, keegan 8, liam 6 wife topat Re: Re: Rude Comments Rosie, You gave me a MUCH needed laugh. With our cleft repair a week away ,everyone in the house sick,and just plain having four kids, two of them CHARGErs, I'm a ball of stress. Laughter is the best medicine...thank you. So glad I just got back on the list:) Tate has, as our six year old son desciribed them, " Yoda " ears so I may just try some of these out! Blessings, Corrie mom to Peyton10(CHARGE),Cy 7, (4) and Tate(CHARGE w/ about the " CHARGEiest " ears you've seen:) > > Hi, : > My son with CHARGE is 11 years old, so I've had plenty of time to > come up with one-liners. Plus, my family says that coming up with " in- > your-face " one-liners is my rare talent! So here goes... hope I don't > offend. Please just take these lightly...or if you just want to > imagine these responses but not really say them, they might give you > a private giggle... > > To people who suggest that Jack's ear can be fixed, you might say: > > 1) Yes, if he lives through another open-heart surgery, the upcoming > subaortic stenosis repair, we might look into that. (wow them with > big words) > > 2) Well, they gave us a choice between heart surgery to save his > life, or plastic surgery to make him pretty - we chose life. > > 3) What are you talking about? We had that ear made special!! It's > the latest fad!! > > 4) Yes, but you see, we are auditioning him for the Lord of the Rings. > > 5) Well, we are of the mindset that God doesn't make mistakes. What > do you think? > > 6) Do you have any idea how many times I've heard that? Believe me, > we have plenty of other things to worry about right now. > > 7) We are suffering enough without comments like that, thank you. > > 8) No speaka English. > > 9) (act like you had not noticed) What??? Oh, my God!! Honey, what > happened to your ear?? Someone call 911, quick!!!! > > 10) (flick your child's ear and say, very casually) Well, you get > what you get and you don't throw a fit. > > 11) I tell him all the time if he keeps telling lies his ear will > continue to grow out like that, but he just doesn't listen. > > 12) You know, he can hear you. > > 13) (or if he can't hear, pretend that you can't either and start > signing to the person, pointing to their nose and making gestures > that imply how big it is, start laughing uproariously, then walk away > shaking your head) > > 14) Oh, are we pointing out each other's flaws now? > > 15) You know they also have surgeries available to fix your face. > > 16) Yes, he's a rather funny-looking little guy. I'm thinking of > trading him in for a different model? You interested? > > Hope these inspire you <smile>... and remember, you are NOT alone! > > Rosie > Mom to Neal (CHARGE-11yrs) and -marie (6 years) > > > Quote Link to comment Share on other sites More sharing options...
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