Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Kathy, I know how fortunate i am that Mitch is able to physically and mentally participte in an activity. Many on this list have kids they wish cuold just do something we all take for granted like walk or breathe on their own....my daughter is in that boat so i understand taht as well. I think what i was hoping for was that everyone else who was there (including the instructor) could understand that my son has to work 8 times as hard as everyone else, expending energy he can ill afford, only to have an outcome that Mitch *knows* is not up to par. There has been much discussion here very recetly about the importance of educating others about mito and after a long sleepless night i have come to the conclusion that this is exactly what i need to be doing. Not being angry. Not even so much grieving for the loss of my son's motor skills and his dream of being in tae kwon do. But to take this disaster and turn it into a teachable moment, even though tears will be pouring down my face as i do so. In reality, this is as much the death of my own dream as it is Mitch's. I had hoped to fight the mito fight on my daughter Lexi's behalf, meanwhile knowing I had sort of an " ace iun the hole " if you will in that Mitch was not affected. I know that sounds terrible. It feels terrible knowing that i hav felt that way. But that is the truth. Okay, pity party is over.....time to grab myself some bootstraps and get busy! ruth, darn proud mom to two beautiful treasures Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Kathy, I know how fortunate i am that Mitch is able to physically and mentally participte in an activity. Many on this list have kids they wish cuold just do something we all take for granted like walk or breathe on their own....my daughter is in that boat so i understand taht as well. I think what i was hoping for was that everyone else who was there (including the instructor) could understand that my son has to work 8 times as hard as everyone else, expending energy he can ill afford, only to have an outcome that Mitch *knows* is not up to par. There has been much discussion here very recetly about the importance of educating others about mito and after a long sleepless night i have come to the conclusion that this is exactly what i need to be doing. Not being angry. Not even so much grieving for the loss of my son's motor skills and his dream of being in tae kwon do. But to take this disaster and turn it into a teachable moment, even though tears will be pouring down my face as i do so. In reality, this is as much the death of my own dream as it is Mitch's. I had hoped to fight the mito fight on my daughter Lexi's behalf, meanwhile knowing I had sort of an " ace iun the hole " if you will in that Mitch was not affected. I know that sounds terrible. It feels terrible knowing that i hav felt that way. But that is the truth. Okay, pity party is over.....time to grab myself some bootstraps and get busy! ruth, darn proud mom to two beautiful treasures Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Kathy, I know how fortunate i am that Mitch is able to physically and mentally participte in an activity. Many on this list have kids they wish cuold just do something we all take for granted like walk or breathe on their own....my daughter is in that boat so i understand taht as well. I think what i was hoping for was that everyone else who was there (including the instructor) could understand that my son has to work 8 times as hard as everyone else, expending energy he can ill afford, only to have an outcome that Mitch *knows* is not up to par. There has been much discussion here very recetly about the importance of educating others about mito and after a long sleepless night i have come to the conclusion that this is exactly what i need to be doing. Not being angry. Not even so much grieving for the loss of my son's motor skills and his dream of being in tae kwon do. But to take this disaster and turn it into a teachable moment, even though tears will be pouring down my face as i do so. In reality, this is as much the death of my own dream as it is Mitch's. I had hoped to fight the mito fight on my daughter Lexi's behalf, meanwhile knowing I had sort of an " ace iun the hole " if you will in that Mitch was not affected. I know that sounds terrible. It feels terrible knowing that i hav felt that way. But that is the truth. Okay, pity party is over.....time to grab myself some bootstraps and get busy! ruth, darn proud mom to two beautiful treasures Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Ruth,,, I know this is hard b/c we have watched lose many abilities over the past year...he was five and a half before we saw any symptoms and had no idea what kind of crazy road it would lead us down... I think its okay to be sad and I am also encouraged that the instructor saw the problem and rewarded him anyway...maybe that was hard for him to accept the belt, knowing he wasn't as good as he needed to be but he tried harder than anyone else and karate is all about excellence, so I think he deserves that belt as much as anyone... on a side, I have seen quite a bit of footage on Mattie Stepanek doing karate exhibits with his vent on.,..so I guess if you really love it and have an understanding instructor, you can still accomplish your dreams... vent anytime deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Ruth,,, I know this is hard b/c we have watched lose many abilities over the past year...he was five and a half before we saw any symptoms and had no idea what kind of crazy road it would lead us down... I think its okay to be sad and I am also encouraged that the instructor saw the problem and rewarded him anyway...maybe that was hard for him to accept the belt, knowing he wasn't as good as he needed to be but he tried harder than anyone else and karate is all about excellence, so I think he deserves that belt as much as anyone... on a side, I have seen quite a bit of footage on Mattie Stepanek doing karate exhibits with his vent on.,..so I guess if you really love it and have an understanding instructor, you can still accomplish your dreams... vent anytime deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Ruth,,, I know this is hard b/c we have watched lose many abilities over the past year...he was five and a half before we saw any symptoms and had no idea what kind of crazy road it would lead us down... I think its okay to be sad and I am also encouraged that the instructor saw the problem and rewarded him anyway...maybe that was hard for him to accept the belt, knowing he wasn't as good as he needed to be but he tried harder than anyone else and karate is all about excellence, so I think he deserves that belt as much as anyone... on a side, I have seen quite a bit of footage on Mattie Stepanek doing karate exhibits with his vent on.,..so I guess if you really love it and have an understanding instructor, you can still accomplish your dreams... vent anytime deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Hey Ruth - I know this is so difficult, because the symptoms came so late. I will tell you it gets easier with age. My daughter danced (tap and ballet) for several years. The school was just great. She has gross motor and cognitive functioning problems. She would do practically everything opposite of the class and was at least several steps behind. She performed in the recital every year. She was thoroughly loved and accepted. However, it was me that had the problem. It took the instructor two years before she convinced me to get over it. I would prode Ariana and practice with her and bring her in for extra time with the instructor trying to help her perform at a level I thought was more appropriate and that she should be capable of. The fact of the matter was she was NOT capable of doing any better. It JUST KILLED me to watch this. And frankly, I was also embarrassed. As time went on, she was the oldest kid in a much younger class, and they were all SO MUCH BETTER than her. But what I learned was that she was getting out of it what she could assimilate, and that was perfect in and of itself. AND she was having great fun!!! In the end, that was all that mattered. When it stopped being fun (I think because she could tell she was having trouble and standing out too much - can't be sure with her, though), we quit. That simple. I have thought about martial arts - have heard they are very accepting of our kids and realize they get out of it what they can and their own sense of self-esteem in what they can do. However, they have class at least two times if not three times per week. She just can't handle that. Might look into it again. Anyway . . . My point is that this disease, hateful as it is, has taught me the hardest lesson of life: Acceptance. I've learned to accept my children just exactly as they are at this very moment. As long as I know they've tried their best and aren't working me, I am perfectly happy to let life be what it will be. This acceptance took a lot of stress out of life and let me enjoy my girls much, much more. I hope this helps! another low moment > Well, it would appear that mito has kicked my family in the teeth once again > and I am in need of a place to vent where people will understand and not > think i am a total nut. For those of you who are new or not familiar with my > family, my name is ruth and i am the mom to two beautiful children, both with > mito related problems. Mitch is 7 1/2 and was symptom free until just about > a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The > newest saga is about Mitch. He has been taking tae kwon do for about 3 years > now and has taken great joy from it. About a year ago, he started to show > deficits in gross and fine motor planning, some problems with sensory > integration, and some visual processing deficits. I enrolled him in OT and > PT to address these issues, and he has made slow but steady gains. In fact, > we stopped PT this summer. Which brings me to the present time. Tonight was > testing night where he was to test for the next level of belt. The > instructor has been beating around the bush for about a month that Mitch is > having dificulty but i was unprepared for what i saaw when i went to watch > him test. He is having HUGE problems with his motor skills, can't follow the > pattern, can't kick, won't jump, etc etc. It was awful watching, broke my > heart, made me want to pull my hair out and just scream at how much i hate > this disease. To make things worse, the instructor gave him a belt rank that > he didn't deserve. Mitch knew it, i knew it, every person watching knew > it..... > > And so now I am trying to hold it all together, not cry in front of my kid, > tell him that i know he's trying his best....but inside my heart is just > breaking. > > Sorry for laying all this at the groups collective feet, but i hve no > othelace to vent. Thanks for reading,,,, > > ruth > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Hey Ruth - I know this is so difficult, because the symptoms came so late. I will tell you it gets easier with age. My daughter danced (tap and ballet) for several years. The school was just great. She has gross motor and cognitive functioning problems. She would do practically everything opposite of the class and was at least several steps behind. She performed in the recital every year. She was thoroughly loved and accepted. However, it was me that had the problem. It took the instructor two years before she convinced me to get over it. I would prode Ariana and practice with her and bring her in for extra time with the instructor trying to help her perform at a level I thought was more appropriate and that she should be capable of. The fact of the matter was she was NOT capable of doing any better. It JUST KILLED me to watch this. And frankly, I was also embarrassed. As time went on, she was the oldest kid in a much younger class, and they were all SO MUCH BETTER than her. But what I learned was that she was getting out of it what she could assimilate, and that was perfect in and of itself. AND she was having great fun!!! In the end, that was all that mattered. When it stopped being fun (I think because she could tell she was having trouble and standing out too much - can't be sure with her, though), we quit. That simple. I have thought about martial arts - have heard they are very accepting of our kids and realize they get out of it what they can and their own sense of self-esteem in what they can do. However, they have class at least two times if not three times per week. She just can't handle that. Might look into it again. Anyway . . . My point is that this disease, hateful as it is, has taught me the hardest lesson of life: Acceptance. I've learned to accept my children just exactly as they are at this very moment. As long as I know they've tried their best and aren't working me, I am perfectly happy to let life be what it will be. This acceptance took a lot of stress out of life and let me enjoy my girls much, much more. I hope this helps! another low moment > Well, it would appear that mito has kicked my family in the teeth once again > and I am in need of a place to vent where people will understand and not > think i am a total nut. For those of you who are new or not familiar with my > family, my name is ruth and i am the mom to two beautiful children, both with > mito related problems. Mitch is 7 1/2 and was symptom free until just about > a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The > newest saga is about Mitch. He has been taking tae kwon do for about 3 years > now and has taken great joy from it. About a year ago, he started to show > deficits in gross and fine motor planning, some problems with sensory > integration, and some visual processing deficits. I enrolled him in OT and > PT to address these issues, and he has made slow but steady gains. In fact, > we stopped PT this summer. Which brings me to the present time. Tonight was > testing night where he was to test for the next level of belt. The > instructor has been beating around the bush for about a month that Mitch is > having dificulty but i was unprepared for what i saaw when i went to watch > him test. He is having HUGE problems with his motor skills, can't follow the > pattern, can't kick, won't jump, etc etc. It was awful watching, broke my > heart, made me want to pull my hair out and just scream at how much i hate > this disease. To make things worse, the instructor gave him a belt rank that > he didn't deserve. Mitch knew it, i knew it, every person watching knew > it..... > > And so now I am trying to hold it all together, not cry in front of my kid, > tell him that i know he's trying his best....but inside my heart is just > breaking. > > Sorry for laying all this at the groups collective feet, but i hve no > othelace to vent. Thanks for reading,,,, > > ruth > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Hey Ruth - I know this is so difficult, because the symptoms came so late. I will tell you it gets easier with age. My daughter danced (tap and ballet) for several years. The school was just great. She has gross motor and cognitive functioning problems. She would do practically everything opposite of the class and was at least several steps behind. She performed in the recital every year. She was thoroughly loved and accepted. However, it was me that had the problem. It took the instructor two years before she convinced me to get over it. I would prode Ariana and practice with her and bring her in for extra time with the instructor trying to help her perform at a level I thought was more appropriate and that she should be capable of. The fact of the matter was she was NOT capable of doing any better. It JUST KILLED me to watch this. And frankly, I was also embarrassed. As time went on, she was the oldest kid in a much younger class, and they were all SO MUCH BETTER than her. But what I learned was that she was getting out of it what she could assimilate, and that was perfect in and of itself. AND she was having great fun!!! In the end, that was all that mattered. When it stopped being fun (I think because she could tell she was having trouble and standing out too much - can't be sure with her, though), we quit. That simple. I have thought about martial arts - have heard they are very accepting of our kids and realize they get out of it what they can and their own sense of self-esteem in what they can do. However, they have class at least two times if not three times per week. She just can't handle that. Might look into it again. Anyway . . . My point is that this disease, hateful as it is, has taught me the hardest lesson of life: Acceptance. I've learned to accept my children just exactly as they are at this very moment. As long as I know they've tried their best and aren't working me, I am perfectly happy to let life be what it will be. This acceptance took a lot of stress out of life and let me enjoy my girls much, much more. I hope this helps! another low moment > Well, it would appear that mito has kicked my family in the teeth once again > and I am in need of a place to vent where people will understand and not > think i am a total nut. For those of you who are new or not familiar with my > family, my name is ruth and i am the mom to two beautiful children, both with > mito related problems. Mitch is 7 1/2 and was symptom free until just about > a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The > newest saga is about Mitch. He has been taking tae kwon do for about 3 years > now and has taken great joy from it. About a year ago, he started to show > deficits in gross and fine motor planning, some problems with sensory > integration, and some visual processing deficits. I enrolled him in OT and > PT to address these issues, and he has made slow but steady gains. In fact, > we stopped PT this summer. Which brings me to the present time. Tonight was > testing night where he was to test for the next level of belt. The > instructor has been beating around the bush for about a month that Mitch is > having dificulty but i was unprepared for what i saaw when i went to watch > him test. He is having HUGE problems with his motor skills, can't follow the > pattern, can't kick, won't jump, etc etc. It was awful watching, broke my > heart, made me want to pull my hair out and just scream at how much i hate > this disease. To make things worse, the instructor gave him a belt rank that > he didn't deserve. Mitch knew it, i knew it, every person watching knew > it..... > > And so now I am trying to hold it all together, not cry in front of my kid, > tell him that i know he's trying his best....but inside my heart is just > breaking. > > Sorry for laying all this at the groups collective feet, but i hve no > othelace to vent. Thanks for reading,,,, > > ruth > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 I also agree that your son should have been rewarded for his effort and not the outcome. I'm sure the instructor is aware of how hard he's trying and is torn - other paying, competitive parents ready to jump up and yell: Hey! My kid is better than that and you didn't cut him any slack!!! Why him? Rock and a hard place. Go gentle. As a martial arts instructor, I'm sure he wants to focus on the children and not the parents. However, I also agree that it's harmful to your child's self-esteem to have been penalized for something he is physically not able to overcome. If the instructor plays his cards right and word gets out of his acceptance and compassion, he might find himself with a class full of children with disabilities that don't want to be in a class with typical children - a class where children with CP earn a black belt based on their capabilities and not the standard criteria. What a beautiful thing this would be in his life. So, again, I say: Go gentle. The ripple effect of this has the potential to be astonishing! Prays and hugs! You go girl! Re: another low moment > Kathy, > > I know how fortunate i am that Mitch is able to physically and mentally > participte in an activity. Many on this list have kids they wish cuold just > do something we all take for granted like walk or breathe on their own....my > daughter is in that boat so i understand taht as well. I think what i was > hoping for was that everyone else who was there (including the instructor) > could understand that my son has to work 8 times as hard as everyone else, > expending energy he can ill afford, only to have an outcome that Mitch > *knows* is not up to par. There has been much discussion here very recetly > about the importance of educating others about mito and after a long > sleepless night i have come to the conclusion that this is exactly what i > need to be doing. Not being angry. Not even so much grieving for the loss > of my son's motor skills and his dream of being in tae kwon do. But to take > this disaster and turn it into a teachable moment, even though tears will be > pouring down my face as i do so. In reality, this is as much the death of my > own dream as it is Mitch's. I had hoped to fight the mito fight on my > daughter Lexi's behalf, meanwhile knowing I had sort of an " ace iun the hole " > if you will in that Mitch was not affected. I know that sounds terrible. It > feels terrible knowing that i hav felt that way. But that is the truth. > > Okay, pity party is over.....time to grab myself some bootstraps and get > busy! > > ruth, > darn proud mom to two beautiful treasures > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 I also agree that your son should have been rewarded for his effort and not the outcome. I'm sure the instructor is aware of how hard he's trying and is torn - other paying, competitive parents ready to jump up and yell: Hey! My kid is better than that and you didn't cut him any slack!!! Why him? Rock and a hard place. Go gentle. As a martial arts instructor, I'm sure he wants to focus on the children and not the parents. However, I also agree that it's harmful to your child's self-esteem to have been penalized for something he is physically not able to overcome. If the instructor plays his cards right and word gets out of his acceptance and compassion, he might find himself with a class full of children with disabilities that don't want to be in a class with typical children - a class where children with CP earn a black belt based on their capabilities and not the standard criteria. What a beautiful thing this would be in his life. So, again, I say: Go gentle. The ripple effect of this has the potential to be astonishing! Prays and hugs! You go girl! Re: another low moment > Kathy, > > I know how fortunate i am that Mitch is able to physically and mentally > participte in an activity. Many on this list have kids they wish cuold just > do something we all take for granted like walk or breathe on their own....my > daughter is in that boat so i understand taht as well. I think what i was > hoping for was that everyone else who was there (including the instructor) > could understand that my son has to work 8 times as hard as everyone else, > expending energy he can ill afford, only to have an outcome that Mitch > *knows* is not up to par. There has been much discussion here very recetly > about the importance of educating others about mito and after a long > sleepless night i have come to the conclusion that this is exactly what i > need to be doing. Not being angry. Not even so much grieving for the loss > of my son's motor skills and his dream of being in tae kwon do. But to take > this disaster and turn it into a teachable moment, even though tears will be > pouring down my face as i do so. In reality, this is as much the death of my > own dream as it is Mitch's. I had hoped to fight the mito fight on my > daughter Lexi's behalf, meanwhile knowing I had sort of an " ace iun the hole " > if you will in that Mitch was not affected. I know that sounds terrible. It > feels terrible knowing that i hav felt that way. But that is the truth. > > Okay, pity party is over.....time to grab myself some bootstraps and get > busy! > > ruth, > darn proud mom to two beautiful treasures > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 I also agree that your son should have been rewarded for his effort and not the outcome. I'm sure the instructor is aware of how hard he's trying and is torn - other paying, competitive parents ready to jump up and yell: Hey! My kid is better than that and you didn't cut him any slack!!! Why him? Rock and a hard place. Go gentle. As a martial arts instructor, I'm sure he wants to focus on the children and not the parents. However, I also agree that it's harmful to your child's self-esteem to have been penalized for something he is physically not able to overcome. If the instructor plays his cards right and word gets out of his acceptance and compassion, he might find himself with a class full of children with disabilities that don't want to be in a class with typical children - a class where children with CP earn a black belt based on their capabilities and not the standard criteria. What a beautiful thing this would be in his life. So, again, I say: Go gentle. The ripple effect of this has the potential to be astonishing! Prays and hugs! You go girl! Re: another low moment > Kathy, > > I know how fortunate i am that Mitch is able to physically and mentally > participte in an activity. Many on this list have kids they wish cuold just > do something we all take for granted like walk or breathe on their own....my > daughter is in that boat so i understand taht as well. I think what i was > hoping for was that everyone else who was there (including the instructor) > could understand that my son has to work 8 times as hard as everyone else, > expending energy he can ill afford, only to have an outcome that Mitch > *knows* is not up to par. There has been much discussion here very recetly > about the importance of educating others about mito and after a long > sleepless night i have come to the conclusion that this is exactly what i > need to be doing. Not being angry. Not even so much grieving for the loss > of my son's motor skills and his dream of being in tae kwon do. But to take > this disaster and turn it into a teachable moment, even though tears will be > pouring down my face as i do so. In reality, this is as much the death of my > own dream as it is Mitch's. I had hoped to fight the mito fight on my > daughter Lexi's behalf, meanwhile knowing I had sort of an " ace iun the hole " > if you will in that Mitch was not affected. I know that sounds terrible. It > feels terrible knowing that i hav felt that way. But that is the truth. > > Okay, pity party is over.....time to grab myself some bootstraps and get > busy! > > ruth, > darn proud mom to two beautiful treasures > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Ruth, I wish there was something I could say, but there are no words. I hurt for you and Mitch and I know how it must feel. Always feel free to vent here as that is one reason we are here. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Ruth, I wish there was something I could say, but there are no words. I hurt for you and Mitch and I know how it must feel. Always feel free to vent here as that is one reason we are here. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Ruth, I wish there was something I could say, but there are no words. I hurt for you and Mitch and I know how it must feel. Always feel free to vent here as that is one reason we are here. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Ruth, May I put some comments in red in your text? Jean hilandgang@... wrote: Kathy, I know how fortunate i am that Mitch is able to physically and mentally participte in an activity. Many on this list have kids they wish cuold just do something we all take for granted like walk or breathe on their own....my daughter is in that boat so i understand taht as well. We all live our own lives and Mito attackes us in so many different ways that the glory of this and other Mito lists is that we recognize kindredship! What would we do if we were truly all alone? We likely all have known that desolate feeling WELL! I think what i was hoping for was that everyone else who was there (including the instructor) could understand that my son has to work 8 times as hard as everyone else, expending energy he can ill afford, only to have an outcome that Mitch *knows* is not up to par. Ruth ... my dear one ... when that instructor gave Mitch that belt he could not have paid more homage to your son's effort!!! A belt, an award, a certificate .... what does it mean? Surely it means consistent effort, diligence, heroism (in Mitch's case, for sure) and co-operation: achievement in skills developed are just minor in the whole scheme of things. This instructor has his/her priorities in order! The other parents will have seen and admired valiant effort, evidence of diligence and will have been blown away because, despite his problems, Mitch was heroic and TRIED! He didn't give up ... he was tenacious! As for Mitch ... sure he knows he cannot do what the others do ... he can look sideways and see! The very fact that he continued with the programme is a testament to one of two things .... his desire to please you or his desire to please himself and do the things that other kids do. Which do you truly think it is? (rhetorical question for you alone!) There has been much discussion here very recetly about the importance of educating others about mito and after a long sleepless night i have come to the conclusion that this is exactly what i need to be doing. Not being angry. Not even so much grieving for the loss of my son's motor skills and his dream of being in tae kwon do. Living with Mito is about ongoing grieving. The grief of the patient is the same ... and yet very different ... as the grief of the caregiver. Part of the grieving process is anger and often depression. As adults we have a two-fold responsibility in dealing with grief. We can choose to stay in the anger and depression mode and, kind of like death, beyond that there is no choice except bitterness and pain. We can choose to wrestle with the anger, like you have done, and rise above it and find ways to work ourselves through it. As patients we have the same two choices! As parents, however, there is another factor in the equation, that actually removes the acceptability of making the choice. We have a little one who looks up to us with love and openness, searching all the time for their proof of love and acceptance. As parents we have no choice ... we are their role models. Sometimes that responsibility is HUGE, isn't it? But to take this disaster nah, Ruth, this isn't a disaster .... this is a learning opportunity for you as a parent. and turn it into a teachable moment, it seems you have made the choice already . good for you! even though tears will be pouring down my face as i do so. no, my dear .... your tears will pour the night before and the night after and many ongoing nights ..... but Mitch got his courage from somewhere! Borrow it back from him and be as valiant as he would have you be. In reality, this is as much the death of my own dream as it is Mitch's. Ruth, my friend ... you are a brave soul. What a liberating admission: what honesty for YOU! Whether this TEST that Mitch received the belt for becomes the death of his dream depends so much now upon how you have the courage to handle it. Does Mitch want to continue? Has he made friends? Is the social experience valuable for HIM? Is this Mitch's chance to teach his peers about courage and determination? If your honest answer to these questions is yes .... then I pray that you and Mitch will continue to follow his dream ... and that you see it from the character building standpoint rather than from the skill acquisition. I had hoped to fight the mito fight on my daughter Lexi's behalf, meanwhile knowing I had sort of an "ace iun the hole" if you will in that Mitch was not affected. I know that sounds terrible. It feels terrible knowing that i hav felt that way. But that is the truth. It is the truth! It isn't terrible! It isn't shameful! It is normal, it is real, it is ____ (I haven't run out of naming words .... just space! <GRIN>) Okay, pity party is over.....time to grab myself some bootstraps and get busy! ruth, darn proud mom to two beautiful treasures Hope you don't mind that I joined your party .... I suspect this party can be really crowded! Good food (for thought), good company (absolutely!!) and good ideas! I only joined you because I am often there myself <GRIN> Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Ruth, May I put some comments in red in your text? Jean hilandgang@... wrote: Kathy, I know how fortunate i am that Mitch is able to physically and mentally participte in an activity. Many on this list have kids they wish cuold just do something we all take for granted like walk or breathe on their own....my daughter is in that boat so i understand taht as well. We all live our own lives and Mito attackes us in so many different ways that the glory of this and other Mito lists is that we recognize kindredship! What would we do if we were truly all alone? We likely all have known that desolate feeling WELL! I think what i was hoping for was that everyone else who was there (including the instructor) could understand that my son has to work 8 times as hard as everyone else, expending energy he can ill afford, only to have an outcome that Mitch *knows* is not up to par. Ruth ... my dear one ... when that instructor gave Mitch that belt he could not have paid more homage to your son's effort!!! A belt, an award, a certificate .... what does it mean? Surely it means consistent effort, diligence, heroism (in Mitch's case, for sure) and co-operation: achievement in skills developed are just minor in the whole scheme of things. This instructor has his/her priorities in order! The other parents will have seen and admired valiant effort, evidence of diligence and will have been blown away because, despite his problems, Mitch was heroic and TRIED! He didn't give up ... he was tenacious! As for Mitch ... sure he knows he cannot do what the others do ... he can look sideways and see! The very fact that he continued with the programme is a testament to one of two things .... his desire to please you or his desire to please himself and do the things that other kids do. Which do you truly think it is? (rhetorical question for you alone!) There has been much discussion here very recetly about the importance of educating others about mito and after a long sleepless night i have come to the conclusion that this is exactly what i need to be doing. Not being angry. Not even so much grieving for the loss of my son's motor skills and his dream of being in tae kwon do. Living with Mito is about ongoing grieving. The grief of the patient is the same ... and yet very different ... as the grief of the caregiver. Part of the grieving process is anger and often depression. As adults we have a two-fold responsibility in dealing with grief. We can choose to stay in the anger and depression mode and, kind of like death, beyond that there is no choice except bitterness and pain. We can choose to wrestle with the anger, like you have done, and rise above it and find ways to work ourselves through it. As patients we have the same two choices! As parents, however, there is another factor in the equation, that actually removes the acceptability of making the choice. We have a little one who looks up to us with love and openness, searching all the time for their proof of love and acceptance. As parents we have no choice ... we are their role models. Sometimes that responsibility is HUGE, isn't it? But to take this disaster nah, Ruth, this isn't a disaster .... this is a learning opportunity for you as a parent. and turn it into a teachable moment, it seems you have made the choice already . good for you! even though tears will be pouring down my face as i do so. no, my dear .... your tears will pour the night before and the night after and many ongoing nights ..... but Mitch got his courage from somewhere! Borrow it back from him and be as valiant as he would have you be. In reality, this is as much the death of my own dream as it is Mitch's. Ruth, my friend ... you are a brave soul. What a liberating admission: what honesty for YOU! Whether this TEST that Mitch received the belt for becomes the death of his dream depends so much now upon how you have the courage to handle it. Does Mitch want to continue? Has he made friends? Is the social experience valuable for HIM? Is this Mitch's chance to teach his peers about courage and determination? If your honest answer to these questions is yes .... then I pray that you and Mitch will continue to follow his dream ... and that you see it from the character building standpoint rather than from the skill acquisition. I had hoped to fight the mito fight on my daughter Lexi's behalf, meanwhile knowing I had sort of an "ace iun the hole" if you will in that Mitch was not affected. I know that sounds terrible. It feels terrible knowing that i hav felt that way. But that is the truth. It is the truth! It isn't terrible! It isn't shameful! It is normal, it is real, it is ____ (I haven't run out of naming words .... just space! <GRIN>) Okay, pity party is over.....time to grab myself some bootstraps and get busy! ruth, darn proud mom to two beautiful treasures Hope you don't mind that I joined your party .... I suspect this party can be really crowded! Good food (for thought), good company (absolutely!!) and good ideas! I only joined you because I am often there myself <GRIN> Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Ruth, May I put some comments in red in your text? Jean hilandgang@... wrote: Kathy, I know how fortunate i am that Mitch is able to physically and mentally participte in an activity. Many on this list have kids they wish cuold just do something we all take for granted like walk or breathe on their own....my daughter is in that boat so i understand taht as well. We all live our own lives and Mito attackes us in so many different ways that the glory of this and other Mito lists is that we recognize kindredship! What would we do if we were truly all alone? We likely all have known that desolate feeling WELL! I think what i was hoping for was that everyone else who was there (including the instructor) could understand that my son has to work 8 times as hard as everyone else, expending energy he can ill afford, only to have an outcome that Mitch *knows* is not up to par. Ruth ... my dear one ... when that instructor gave Mitch that belt he could not have paid more homage to your son's effort!!! A belt, an award, a certificate .... what does it mean? Surely it means consistent effort, diligence, heroism (in Mitch's case, for sure) and co-operation: achievement in skills developed are just minor in the whole scheme of things. This instructor has his/her priorities in order! The other parents will have seen and admired valiant effort, evidence of diligence and will have been blown away because, despite his problems, Mitch was heroic and TRIED! He didn't give up ... he was tenacious! As for Mitch ... sure he knows he cannot do what the others do ... he can look sideways and see! The very fact that he continued with the programme is a testament to one of two things .... his desire to please you or his desire to please himself and do the things that other kids do. Which do you truly think it is? (rhetorical question for you alone!) There has been much discussion here very recetly about the importance of educating others about mito and after a long sleepless night i have come to the conclusion that this is exactly what i need to be doing. Not being angry. Not even so much grieving for the loss of my son's motor skills and his dream of being in tae kwon do. Living with Mito is about ongoing grieving. The grief of the patient is the same ... and yet very different ... as the grief of the caregiver. Part of the grieving process is anger and often depression. As adults we have a two-fold responsibility in dealing with grief. We can choose to stay in the anger and depression mode and, kind of like death, beyond that there is no choice except bitterness and pain. We can choose to wrestle with the anger, like you have done, and rise above it and find ways to work ourselves through it. As patients we have the same two choices! As parents, however, there is another factor in the equation, that actually removes the acceptability of making the choice. We have a little one who looks up to us with love and openness, searching all the time for their proof of love and acceptance. As parents we have no choice ... we are their role models. Sometimes that responsibility is HUGE, isn't it? But to take this disaster nah, Ruth, this isn't a disaster .... this is a learning opportunity for you as a parent. and turn it into a teachable moment, it seems you have made the choice already . good for you! even though tears will be pouring down my face as i do so. no, my dear .... your tears will pour the night before and the night after and many ongoing nights ..... but Mitch got his courage from somewhere! Borrow it back from him and be as valiant as he would have you be. In reality, this is as much the death of my own dream as it is Mitch's. Ruth, my friend ... you are a brave soul. What a liberating admission: what honesty for YOU! Whether this TEST that Mitch received the belt for becomes the death of his dream depends so much now upon how you have the courage to handle it. Does Mitch want to continue? Has he made friends? Is the social experience valuable for HIM? Is this Mitch's chance to teach his peers about courage and determination? If your honest answer to these questions is yes .... then I pray that you and Mitch will continue to follow his dream ... and that you see it from the character building standpoint rather than from the skill acquisition. I had hoped to fight the mito fight on my daughter Lexi's behalf, meanwhile knowing I had sort of an "ace iun the hole" if you will in that Mitch was not affected. I know that sounds terrible. It feels terrible knowing that i hav felt that way. But that is the truth. It is the truth! It isn't terrible! It isn't shameful! It is normal, it is real, it is ____ (I haven't run out of naming words .... just space! <GRIN>) Okay, pity party is over.....time to grab myself some bootstraps and get busy! ruth, darn proud mom to two beautiful treasures Hope you don't mind that I joined your party .... I suspect this party can be really crowded! Good food (for thought), good company (absolutely!!) and good ideas! I only joined you because I am often there myself <GRIN> Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Thank you for sharing so frankly your feelings about dance and your acceptance ( or lack there of at first). It is so good to connect with people who have similar struggles. Cameron is almost two and it is so hard for me sometimes to watch kids much younger talk, eat and get to do more things than him out in public without great fear of illness. Thank you for sharing from the heart. Riley -----Original Message-----From: Fagan Sent: Thursday, December 19, 2002 8:13 AMTo: Mito Subject: Re: another low momentHey Ruth -I know this is so difficult, because the symptoms came so late. I will tellyou it gets easier with age.My daughter danced (tap and ballet) for several years. The school was justgreat. She has gross motor and cognitive functioning problems. She woulddo practically everything opposite of the class and was at least severalsteps behind. She performed in the recital every year. She was thoroughlyloved and accepted.However, it was me that had the problem. It took the instructor two yearsbefore she convinced me to get over it. I would prode Ariana and practicewith her and bring her in for extra time with the instructor trying to helpher perform at a level I thought was more appropriate and that she should becapable of.The fact of the matter was she was NOT capable of doing any better. It JUSTKILLED me to watch this. And frankly, I was also embarrassed. As time wenton, she was the oldest kid in a much younger class, and they were all SOMUCH BETTER than her.But what I learned was that she was getting out of it what she couldassimilate, and that was perfect in and of itself. AND she was having greatfun!!! In the end, that was all that mattered. When it stopped being fun(I think because she could tell she was having trouble and standing out toomuch - can't be sure with her, though), we quit. That simple.I have thought about martial arts - have heard they are very accepting ofour kids and realize they get out of it what they can and their own sense ofself-esteem in what they can do. However, they have class at least twotimes if not three times per week. She just can't handle that. Might lookinto it again.Anyway . . . My point is that this disease, hateful as it is, has taught methe hardest lesson of life: Acceptance. I've learned to accept my childrenjust exactly as they are at this very moment. As long as I know they'vetried their best and aren't working me, I am perfectly happy to let life bewhat it will be. This acceptance took a lot of stress out of life and letme enjoy my girls much, much more.I hope this helps! another low moment> Well, it would appear that mito has kicked my family in the teeth onceagain> and I am in need of a place to vent where people will understand and not> think i am a total nut. For those of you who are new or not familiar withmy> family, my name is ruth and i am the mom to two beautiful children, bothwith> mito related problems. Mitch is 7 1/2 and was symptom free until justabout> a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The> newest saga is about Mitch. He has been taking tae kwon do for about 3years> now and has taken great joy from it. About a year ago, he started to show> deficits in gross and fine motor planning, some problems with sensory> integration, and some visual processing deficits. I enrolled him in OTand> PT to address these issues, and he has made slow but steady gains. Infact,> we stopped PT this summer. Which brings me to the present time. Tonightwas> testing night where he was to test for the next level of belt. The> instructor has been beating around the bush for about a month that Mitchis> having dificulty but i was unprepared for what i saaw when i went to watch> him test. He is having HUGE problems with his motor skills, can't followthe> pattern, can't kick, won't jump, etc etc. It was awful watching, broke my> heart, made me want to pull my hair out and just scream at how much i hate> this disease. To make things worse, the instructor gave him a belt rankthat> he didn't deserve. Mitch knew it, i knew it, every person watching knew> it.....>> And so now I am trying to hold it all together, not cry in front of mykid,> tell him that i know he's trying his best....but inside my heart is just> breaking.>> Sorry for laying all this at the groups collective feet, but i hve no> othelace to vent. Thanks for reading,,,,>> ruth>> Please contact mito-owner with any problems or questions.>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Thank you for sharing so frankly your feelings about dance and your acceptance ( or lack there of at first). It is so good to connect with people who have similar struggles. Cameron is almost two and it is so hard for me sometimes to watch kids much younger talk, eat and get to do more things than him out in public without great fear of illness. Thank you for sharing from the heart. Riley -----Original Message-----From: Fagan Sent: Thursday, December 19, 2002 8:13 AMTo: Mito Subject: Re: another low momentHey Ruth -I know this is so difficult, because the symptoms came so late. I will tellyou it gets easier with age.My daughter danced (tap and ballet) for several years. The school was justgreat. She has gross motor and cognitive functioning problems. She woulddo practically everything opposite of the class and was at least severalsteps behind. She performed in the recital every year. She was thoroughlyloved and accepted.However, it was me that had the problem. It took the instructor two yearsbefore she convinced me to get over it. I would prode Ariana and practicewith her and bring her in for extra time with the instructor trying to helpher perform at a level I thought was more appropriate and that she should becapable of.The fact of the matter was she was NOT capable of doing any better. It JUSTKILLED me to watch this. And frankly, I was also embarrassed. As time wenton, she was the oldest kid in a much younger class, and they were all SOMUCH BETTER than her.But what I learned was that she was getting out of it what she couldassimilate, and that was perfect in and of itself. AND she was having greatfun!!! In the end, that was all that mattered. When it stopped being fun(I think because she could tell she was having trouble and standing out toomuch - can't be sure with her, though), we quit. That simple.I have thought about martial arts - have heard they are very accepting ofour kids and realize they get out of it what they can and their own sense ofself-esteem in what they can do. However, they have class at least twotimes if not three times per week. She just can't handle that. Might lookinto it again.Anyway . . . My point is that this disease, hateful as it is, has taught methe hardest lesson of life: Acceptance. I've learned to accept my childrenjust exactly as they are at this very moment. As long as I know they'vetried their best and aren't working me, I am perfectly happy to let life bewhat it will be. This acceptance took a lot of stress out of life and letme enjoy my girls much, much more.I hope this helps! another low moment> Well, it would appear that mito has kicked my family in the teeth onceagain> and I am in need of a place to vent where people will understand and not> think i am a total nut. For those of you who are new or not familiar withmy> family, my name is ruth and i am the mom to two beautiful children, bothwith> mito related problems. Mitch is 7 1/2 and was symptom free until justabout> a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The> newest saga is about Mitch. He has been taking tae kwon do for about 3years> now and has taken great joy from it. About a year ago, he started to show> deficits in gross and fine motor planning, some problems with sensory> integration, and some visual processing deficits. I enrolled him in OTand> PT to address these issues, and he has made slow but steady gains. Infact,> we stopped PT this summer. Which brings me to the present time. Tonightwas> testing night where he was to test for the next level of belt. The> instructor has been beating around the bush for about a month that Mitchis> having dificulty but i was unprepared for what i saaw when i went to watch> him test. He is having HUGE problems with his motor skills, can't followthe> pattern, can't kick, won't jump, etc etc. It was awful watching, broke my> heart, made me want to pull my hair out and just scream at how much i hate> this disease. To make things worse, the instructor gave him a belt rankthat> he didn't deserve. Mitch knew it, i knew it, every person watching knew> it.....>> And so now I am trying to hold it all together, not cry in front of mykid,> tell him that i know he's trying his best....but inside my heart is just> breaking.>> Sorry for laying all this at the groups collective feet, but i hve no> othelace to vent. Thanks for reading,,,,>> ruth>> Please contact mito-owner with any problems or questions.>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 as always has said it so perfectly! Ruth my daughter was diagnosed last year and has continued to regress. Her IQ is now down to 60 and she struggles with just the simple things. She has not been in school in over a year, but the special ed teacher at the new school would be attending put her on the A honor roll and she got a certificate and her name was in the paper and on the school announcments. did not do the work to recieve the A honor roll by any means because she was unable to but she recieved her place on the honor roll because she was kind to her homebound teacher and tried really hard to complete the life skills they worked on each Friday. The effort she put forth whether she completed the task or crashed was what got her on the honor roll. I was so touched that the teacher did this and yes knew she was not up on the A level but when I explained to her that she got it because she worked hard and really tried she got this BIG GRIN on her beautiful face that was just worth a million! I find myself in your shoes often, down and depressed wondering what will happen next. This week is especially hard for me because we are going to Disney for 's Make A Wish trip. One part of me is excited about going but the other side of me is falling apart trying to hold my self together knowing why we are getting this trip and just wanting so much for to have the strength to enjoy with crashing. So its a mixed bag for me. I dont know what I would do without these wonderful people on this list. They keep me going somedays when I just dont have it in me. We are always here for each other whether we are celebrating a happy moment when our child has done some simple thing that is a HUGE accomplishment or whether we are just struggling to make it through the day. We are always here. I am proud of your son's accomplishments and your childs teacher for recognizing his effort. Best to you and yours, Happy Holidays! Horsley leehorsley@... Re: another low moment Ruth, May I put some comments in red in your text? hilandgang@... wrote: Kathy, I know how fortunate i am that Mitch is able to physically and mentally participte in an activity. Many on this list have kids they wish cuold just do something we all take for granted like walk or breathe on their own....my daughter is in that boat so i understand taht as well.We all live our own lives and Mito attackes us in so many different ways that the glory of this and other Mito lists is that we recognize kindredship! What would we do if we were truly all alone? We likely all have known that desolate feeling WELL! I think what i was hoping for was that everyone else who was there (including the instructor) could understand that my son has to work 8 times as hard as everyone else, expending energy he can ill afford, only to have an outcome that Mitch *knows* is not up to par.Ruth ... my dear one ... when that instructor gave Mitch that belt he could not have paid more homage to your son's effort!!! A belt, an award, a certificate .... what does it mean? Surely it means consistent effort, diligence, heroism (in Mitch's case, for sure) and co-operation: achievement in skills developed are just minor in the whole scheme of things. This instructor has his/her priorities in order! The other parents will have seen and admired valiant effort, evidence of diligence and will have been blown away because, despite his problems, Mitch was heroic and TRIED! He didn't give up ... he was tenacious! As for Mitch ... sure he knows he cannot do what the others do ... he can look sideways and see! The very fact that he continued with the programme is a testament to one of two things .... his desire to please you or his desire to please himself and do the things that other kids do. Which do you truly think it is? (rhetorical question for you alone!) There has been much discussion here very recetly about the importance of educating others about mito and after a long sleepless night i have come to the conclusion that this is exactly what i need to be doing. Not being angry. Not even so much grieving for the loss of my son's motor skills and his dream of being in tae kwon do.Living with Mito is about ongoing grieving. The grief of the patient is the same ... and yet very different ... as the grief of the caregiver. Part of the grieving process is anger and often depression. As adults we have a two-fold responsibility in dealing with grief. We can choose to stay in the anger and depression mode and, kind of like death, beyond that there is no choice except bitterness and pain. We can choose to wrestle with the anger, like you have done, and rise above it and find ways to work ourselves through it. As patients we have the same two choices! As parents, however, there is another factor in the equation, that actually removes the acceptability of making the choice. We have a little one who looks up to us with love and openness, searching all the time for their proof of love and acceptance. As parents we have no choice ... we are their role models. Sometimes that responsibility is HUGE, isn't it? But to take this disasternah, Ruth, this isn't a disaster .... this is a learning opportunity for you as a parent. and turn it into a teachable moment,it seems you have made the choice already . good for you! even though tears will be pouring down my face as i do so.no, my dear .... your tears will pour the night before and the night after and many ongoing nights ..... but Mitch got his courage from somewhere! Borrow it back from him and be as valiant as he would have you be. In reality, this is as much the death of my own dream as it is Mitch's.Ruth, my friend ... you are a brave soul. What a liberating admission: what honesty for YOU! Whether this TEST that Mitch received the belt for becomes the death of his dream depends so much now upon how you have the courage to handle it. Does Mitch want to continue? Has he made friends? Is the social experience valuable for HIM? Is this Mitch's chance to teach his peers about courage and determination? If your honest answer to these questions is yes .... then I pray that you and Mitch will continue to follow his dream ... and that you see it from the character building standpoint rather than from the skill acquisition. I had hoped to fight the mito fight on my daughter Lexi's behalf, meanwhile knowing I had sort of an "ace iun the hole" if you will in that Mitch was not affected. I know that sounds terrible. It feels terrible knowing that i hav felt that way. But that is the truth.It is the truth! It isn't terrible! It isn't shameful! It is normal, it is real, it is ____ (I haven't run out of naming words .... just space! <GRIN>) Okay, pity party is over.....time to grab myself some bootstraps and get busy! ruth, darn proud mom to two beautiful treasuresHope you don't mind that I joined your party .... I suspect this party can be really crowded! Good food (for thought), good company (absolutely!!) and good ideas! I only joined you because I am often there myself <GRIN> Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 as always has said it so perfectly! Ruth my daughter was diagnosed last year and has continued to regress. Her IQ is now down to 60 and she struggles with just the simple things. She has not been in school in over a year, but the special ed teacher at the new school would be attending put her on the A honor roll and she got a certificate and her name was in the paper and on the school announcments. did not do the work to recieve the A honor roll by any means because she was unable to but she recieved her place on the honor roll because she was kind to her homebound teacher and tried really hard to complete the life skills they worked on each Friday. The effort she put forth whether she completed the task or crashed was what got her on the honor roll. I was so touched that the teacher did this and yes knew she was not up on the A level but when I explained to her that she got it because she worked hard and really tried she got this BIG GRIN on her beautiful face that was just worth a million! I find myself in your shoes often, down and depressed wondering what will happen next. This week is especially hard for me because we are going to Disney for 's Make A Wish trip. One part of me is excited about going but the other side of me is falling apart trying to hold my self together knowing why we are getting this trip and just wanting so much for to have the strength to enjoy with crashing. So its a mixed bag for me. I dont know what I would do without these wonderful people on this list. They keep me going somedays when I just dont have it in me. We are always here for each other whether we are celebrating a happy moment when our child has done some simple thing that is a HUGE accomplishment or whether we are just struggling to make it through the day. We are always here. I am proud of your son's accomplishments and your childs teacher for recognizing his effort. Best to you and yours, Happy Holidays! Horsley leehorsley@... Re: another low moment Ruth, May I put some comments in red in your text? hilandgang@... wrote: Kathy, I know how fortunate i am that Mitch is able to physically and mentally participte in an activity. Many on this list have kids they wish cuold just do something we all take for granted like walk or breathe on their own....my daughter is in that boat so i understand taht as well.We all live our own lives and Mito attackes us in so many different ways that the glory of this and other Mito lists is that we recognize kindredship! What would we do if we were truly all alone? We likely all have known that desolate feeling WELL! I think what i was hoping for was that everyone else who was there (including the instructor) could understand that my son has to work 8 times as hard as everyone else, expending energy he can ill afford, only to have an outcome that Mitch *knows* is not up to par.Ruth ... my dear one ... when that instructor gave Mitch that belt he could not have paid more homage to your son's effort!!! A belt, an award, a certificate .... what does it mean? Surely it means consistent effort, diligence, heroism (in Mitch's case, for sure) and co-operation: achievement in skills developed are just minor in the whole scheme of things. This instructor has his/her priorities in order! The other parents will have seen and admired valiant effort, evidence of diligence and will have been blown away because, despite his problems, Mitch was heroic and TRIED! He didn't give up ... he was tenacious! As for Mitch ... sure he knows he cannot do what the others do ... he can look sideways and see! The very fact that he continued with the programme is a testament to one of two things .... his desire to please you or his desire to please himself and do the things that other kids do. Which do you truly think it is? (rhetorical question for you alone!) There has been much discussion here very recetly about the importance of educating others about mito and after a long sleepless night i have come to the conclusion that this is exactly what i need to be doing. Not being angry. Not even so much grieving for the loss of my son's motor skills and his dream of being in tae kwon do.Living with Mito is about ongoing grieving. The grief of the patient is the same ... and yet very different ... as the grief of the caregiver. Part of the grieving process is anger and often depression. As adults we have a two-fold responsibility in dealing with grief. We can choose to stay in the anger and depression mode and, kind of like death, beyond that there is no choice except bitterness and pain. We can choose to wrestle with the anger, like you have done, and rise above it and find ways to work ourselves through it. As patients we have the same two choices! As parents, however, there is another factor in the equation, that actually removes the acceptability of making the choice. We have a little one who looks up to us with love and openness, searching all the time for their proof of love and acceptance. As parents we have no choice ... we are their role models. Sometimes that responsibility is HUGE, isn't it? But to take this disasternah, Ruth, this isn't a disaster .... this is a learning opportunity for you as a parent. and turn it into a teachable moment,it seems you have made the choice already . good for you! even though tears will be pouring down my face as i do so.no, my dear .... your tears will pour the night before and the night after and many ongoing nights ..... but Mitch got his courage from somewhere! Borrow it back from him and be as valiant as he would have you be. In reality, this is as much the death of my own dream as it is Mitch's.Ruth, my friend ... you are a brave soul. What a liberating admission: what honesty for YOU! Whether this TEST that Mitch received the belt for becomes the death of his dream depends so much now upon how you have the courage to handle it. Does Mitch want to continue? Has he made friends? Is the social experience valuable for HIM? Is this Mitch's chance to teach his peers about courage and determination? If your honest answer to these questions is yes .... then I pray that you and Mitch will continue to follow his dream ... and that you see it from the character building standpoint rather than from the skill acquisition. I had hoped to fight the mito fight on my daughter Lexi's behalf, meanwhile knowing I had sort of an "ace iun the hole" if you will in that Mitch was not affected. I know that sounds terrible. It feels terrible knowing that i hav felt that way. But that is the truth.It is the truth! It isn't terrible! It isn't shameful! It is normal, it is real, it is ____ (I haven't run out of naming words .... just space! <GRIN>) Okay, pity party is over.....time to grab myself some bootstraps and get busy! ruth, darn proud mom to two beautiful treasuresHope you don't mind that I joined your party .... I suspect this party can be really crowded! Good food (for thought), good company (absolutely!!) and good ideas! I only joined you because I am often there myself <GRIN> Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 This was so hard to read. I think of my little boy and how I want the best for him. Your venting helped me access my own feelings. I wish Mitch the best and if he is doing his very best then that is what counts. His instructor is wise not to pass up the opportunity to advance him up in spite of his disability. Riley -----Original Message-----From: hilandgang@... Sent: Wednesday, December 18, 2002 8:22 PMTo: Mito Subject: another low momentWell, it would appear that mito has kicked my family in the teeth once again and I am in need of a place to vent where people will understand and not think i am a total nut. For those of you who are new or not familiar with my family, my name is ruth and i am the mom to two beautiful children, both with mito related problems. Mitch is 7 1/2 and was symptom free until just about a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The newest saga is about Mitch. He has been taking tae kwon do for about 3 years now and has taken great joy from it. About a year ago, he started to show deficits in gross and fine motor planning, some problems with sensory integration, and some visual processing deficits. I enrolled him in OT and PT to address these issues, and he has made slow but steady gains. In fact, we stopped PT this summer. Which brings me to the present time. Tonight was testing night where he was to test for the next level of belt. The instructor has been beating around the bush for about a month that Mitch is having dificulty but i was unprepared for what i saaw when i went to watch him test. He is having HUGE problems with his motor skills, can't follow the pattern, can't kick, won't jump, etc etc. It was awful watching, broke my heart, made me want to pull my hair out and just scream at how much i hate this disease. To make things worse, the instructor gave him a belt rank that he didn't deserve. Mitch knew it, i knew it, every person watching knew it.....And so now I am trying to hold it all together, not cry in front of my kid, tell him that i know he's trying his best....but inside my heart is just breaking. Sorry for laying all this at the groups collective feet, but i hve no othelace to vent. Thanks for reading,,,,ruthPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 This was so hard to read. I think of my little boy and how I want the best for him. Your venting helped me access my own feelings. I wish Mitch the best and if he is doing his very best then that is what counts. His instructor is wise not to pass up the opportunity to advance him up in spite of his disability. Riley -----Original Message-----From: hilandgang@... Sent: Wednesday, December 18, 2002 8:22 PMTo: Mito Subject: another low momentWell, it would appear that mito has kicked my family in the teeth once again and I am in need of a place to vent where people will understand and not think i am a total nut. For those of you who are new or not familiar with my family, my name is ruth and i am the mom to two beautiful children, both with mito related problems. Mitch is 7 1/2 and was symptom free until just about a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The newest saga is about Mitch. He has been taking tae kwon do for about 3 years now and has taken great joy from it. About a year ago, he started to show deficits in gross and fine motor planning, some problems with sensory integration, and some visual processing deficits. I enrolled him in OT and PT to address these issues, and he has made slow but steady gains. In fact, we stopped PT this summer. Which brings me to the present time. Tonight was testing night where he was to test for the next level of belt. The instructor has been beating around the bush for about a month that Mitch is having dificulty but i was unprepared for what i saaw when i went to watch him test. He is having HUGE problems with his motor skills, can't follow the pattern, can't kick, won't jump, etc etc. It was awful watching, broke my heart, made me want to pull my hair out and just scream at how much i hate this disease. To make things worse, the instructor gave him a belt rank that he didn't deserve. Mitch knew it, i knew it, every person watching knew it.....And so now I am trying to hold it all together, not cry in front of my kid, tell him that i know he's trying his best....but inside my heart is just breaking. Sorry for laying all this at the groups collective feet, but i hve no othelace to vent. Thanks for reading,,,,ruthPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 This was so hard to read. I think of my little boy and how I want the best for him. Your venting helped me access my own feelings. I wish Mitch the best and if he is doing his very best then that is what counts. His instructor is wise not to pass up the opportunity to advance him up in spite of his disability. Riley -----Original Message-----From: hilandgang@... Sent: Wednesday, December 18, 2002 8:22 PMTo: Mito Subject: another low momentWell, it would appear that mito has kicked my family in the teeth once again and I am in need of a place to vent where people will understand and not think i am a total nut. For those of you who are new or not familiar with my family, my name is ruth and i am the mom to two beautiful children, both with mito related problems. Mitch is 7 1/2 and was symptom free until just about a year ago. Lexi is 4 1/2 and has had numerous problems since birth. The newest saga is about Mitch. He has been taking tae kwon do for about 3 years now and has taken great joy from it. About a year ago, he started to show deficits in gross and fine motor planning, some problems with sensory integration, and some visual processing deficits. I enrolled him in OT and PT to address these issues, and he has made slow but steady gains. In fact, we stopped PT this summer. Which brings me to the present time. Tonight was testing night where he was to test for the next level of belt. The instructor has been beating around the bush for about a month that Mitch is having dificulty but i was unprepared for what i saaw when i went to watch him test. He is having HUGE problems with his motor skills, can't follow the pattern, can't kick, won't jump, etc etc. It was awful watching, broke my heart, made me want to pull my hair out and just scream at how much i hate this disease. To make things worse, the instructor gave him a belt rank that he didn't deserve. Mitch knew it, i knew it, every person watching knew it.....And so now I am trying to hold it all together, not cry in front of my kid, tell him that i know he's trying his best....but inside my heart is just breaking. Sorry for laying all this at the groups collective feet, but i hve no othelace to vent. Thanks for reading,,,,ruthPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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