Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Michele, It sounds to me like you are describing a lack of perception of social norms. This is fine when they are little and we all think they are adorable. Then they get older and society begins to judge and expect that we all, including our precious children, know how to conform to the norm. If they don't conform they are perceived as weird or retarded or whatever... My sense is that is what you are concerned about. All the things that people found charming before can suddenly lead to " being in trouble " . I see this as more of a common CHARGE issue than actual cognition problems, such as with MR. It is again a sensory issue and I think our kids sensory issues are impacted in many ways, not just the obvious vision and hearing, but as you've mentioned sensation of pain etc, vestibular, smell, ... plus the nuances of social norms. Of course language helps to some degree to explain the norms, but I am not sure how to help them perceive the norms, and then again do you want to? If they are confident with themselves, do you want to introduce doubt, but yet we want them to fit in. Boy, I sure simplified it for you, didn¹t I? And I bet she is one precious angel up there singing away with her whole body. Kim > > To start this story, we are not a church-going family. However, the > church right down the street has built a large wonderful community > center. As a fundraiser before, during, and after construction, they > have held monthly brunches with fabulous food. So we've been walking > down for meals for probably a year or so. One of Aubrie's best friends > from school goes there and loves for her to come to their functions. > This school year, she's been going to their Wed youth program after > school. You might recall that I was asking questions about an aid or > help during that program. Anyway-- the kids performed with the choir in > church today so we had to go to see her and she went to sunday school > prior to church. Oh, she loved it!! It is such a welcoming church. > Not one word to Mom and Dad about attending -- just lots of open arms > for Aubrie to participate in kids' stuff. Now she's sure she wants to > go every week cuz it was so much fun! In addition, I think the kids are > singing with the choir again next Sun both in the am and eve. > > Aubrie was the most enthusiastic angel on the stage. She can't sing > without rocking her head and swaying her body. And she does arm > movements if they fit in plus she'll do a big 'hurrah " with her arms up > at the end of a song. I swear she'll be on Broadway one day!! All the > other kids were still as stone. > > During the school program earlier this week, she sang with the same > full-body enthusiasm. The same good buddy from church was beside her on > the crowded risers. He'd look down ocassionally and whisper seeming to > tell her to be still. But he tolerated her swaying in his space quite > well! He was telling her more for her own benefit than because it > bothered him. > > As adorable as she is -- it does bother me when her differences are so > apparent. I don't quite understand what it is that makes her behavior > and " way of being " so different from the other kids. It's not just her > physical differences. She's right up there with them cognitively. But > she doesn't get embarrassed and be still like the others. Her eyes are > wandering -- like in a way that is due to her visual impairments. Her > whole body moves with the music. When the older kids were singing, her > group was sitting and she was rocking big time. She is oblivious to the > " ways you should behave " . > Today we were writing in her Junie B Beeswax Journal. It's got > pages with idea starters. She had no examples of things that make her > scared or embarrassed - and I can't think of anything that she's really > frightened of (except scary masks at Halloween) or embarrassed by. At > first, she had no ideas of things that make her nervous -- until I > brought up surgery, giving blood, and the dentist. > She's just got an indescribable something that makes her very > different. If I didn't know she was smart, I'd think she was mentally > retarded. So apparently, what I have always thought of as stereotypical > " retarded " behavior isn't that at all. Forgive my political > incorrectness. I find it very difficult to find a graceful way to > discuss cognitive impairments. Perhaps because I am fearful of them in > Aubrie. Oh well... now we're getting deep, eh? > > If I better understood my questions, I'd ask them. But as it is, maybe > someone can get a feeling for what I'm bothered about and help me get to > the center of it. > > Michele W > Aubrie's mom 7 yrs > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hi Michele- I don't have any answers for you - but gosh I think I have similar feelings! (age 15, 10th grade) is a wonder, amazing and incredible. I love him, cherish him and am grateful for his life beyond all measure. If you have ever seen " RocketMan " - a film about an eccentric engineer being called to replace an injured astronaut on a live Mars Mission - is exactly the main character. Exactly. It's funny in the movie, and it works out wonderfully- however, himself does not enjoy the mention that I think he is like the character in the movie. When he starts to " go off " in a single subject diatribe-like monologue (on subjects that range from the colonization of Mars, or the propagation of Digimon - or his recital of all his future plans step-by-step with all contingencies illuminated), and I see his age peers trying to pretend to be interested, then gradually move to pretending to be there but not listening, then disengaging as though they just happen to be standing there but are not involved, then casually walk off - I feel every neuron in my body firing as if it could change what was doing. When a 'normal' kid seeks out 's friendship, I wonder what extraordinary traits or circumstances that child must have in their life that allows them to be able to grasp the value in 's friendship (and they do usually have something). is well regarded and accepted by his peers, and is known for being good natured, responsible, serious about school and occasionally " going off " like Mr. Magoo. What doesn't have (and really wants) is a good friend (or even more than one!) at school - one he can be completely himself with - feel whole and complete as he is. And I am totally an unfair observer. When he has completely charming, appropriate and " cool " interactions, I am slightly surprised and warmly pleased. But when he has one I think of as " inappropriate " - or contrary to what I see as his goals of socialization- I cringe and shrivel up inside with anxiety and worry. Yet that reaction is mine. What am I afraid of? Am I afraid of him not being perfect? Have I moved perfect away from the medical issues and transferred them to these social issues? He wants to be successful and fit -in, certainly he has to do that - he needs to do that on his own terms - why do I doubt the universe is capable of providing him with that acceptance on every level he desires? Why can I see other children solely by their strengths and qualify the strengths of my own so often by their challenges? It doesn't help that is extremely sensitive to any criticism (which he hardly warrants receiving), tries to make " one rule for all occasions " (that OCD-esque thing), and often has holes in his social awareness. He is pretty good about body language, but with tone of voice, he modulates between oblivious to over-sensitive - with little mid-ground. He misses chances to hear that people are losing interest or politely trying to change the subject - and he accuses people complimenting him or making small talk of criticizing or interrogating him. Alot has to do with setting and what he is doing - but it does panic me. Maybe it's because I don't yet understand all the " how's " and " why's " of these physical/social differences, so I am worried that they might mean something - worse up ahead, something that needs fixing, something we didn't do, something we did wrong, something we need to figure out. Maybe if I felt I understood it it would be ok with me- I could be as comfortable with it as other medical and educational delays and uniqueness in 's life. Not to focus 100% on my concerns, I will add (and the importance of this is I am sure upside-down by the amount of space I am giving it) he has been developing extremely wonderful strengths in listening, empathy, understanding, moral support and encouragement - that added to his natural patience, good-naturedness and basic " accepting " personality makes the good times really great! wasn't always looking for a friend. When he was in elementary school, he had what I call " Yorkshire Terrier Status " - everyone in the school knew him and would wave to him and smile - but that was it- he was a celebrity. He loved it though - and never thought for a moment he wasn't extremely well liked and popular. It was in Middle School that his own emotional needs seem to exceed what was being provided by his celebrityhood. He didn't want to be short, different or fawned over any more . He was aware now that this was what was happening. I know I cherish the growth in my own life that is borne of challenge and discomfort. It was a shock for me to see realize that in some ways 's medical issues have been more my challenges and not his, and that this issue of social acceptance was his to bear - and I really couldn't help much in any way that made me feel better. never boasts except if he is feeling really lacking. For example, when he was nine he couldn't dribble a basketball at all, he would boast what an excellent basketball player he was (this was the first time he boasted!). When his cartwheels in gymnastics were really collapsing because of his limited range of motion on the shoulders he boasted about those. Prior to receiving some testosterone, he boasted of how much " puberty " he was experiencing - even asking other people his age to notice (eek!) Now with Student Government Elections coming up - he boasts of winning and his popularity - so I already know this is a soft spot for him and he is aware of it. Michele- thank you for this opportunity to explore these thoughts - writing this has made me appreciate how far has come in his own journey, and I feel more optimistic about him succeeding in his own estimation than I ever had before! ). On closing - used to also be fearless - that with the lack of vestibular awareness - he was a rollercoaster fiend! But at age 12 he developed really panicking anxiety about heights, falling, swimming and drowning. What a grand topic of discussion you have opened up for us! ) with love and all that goes with it- yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Yes, that's it. But it feels so " big " that I guess I am wondering if there's more. Is it really just that simple that she's different? I think it's also the worry for her future that I can ignore daily. But when her differences are so blatant, I can't ignore the fact that some of her future is unknown. Does that make sense? Thanks for being a sounding board and helping me to sort out my feelings. Michele W Sirota wrote: > Michele, > > I think I understand how you felt. Correct me if I am > totally off base here. > > You think your daughter is the most beautiful > wonderful thing on this Earth,you enjoy and celebrate > all her acheivements - cognitavely and physically. > You are her best advocate, friend, supporter, etc. > She is up there cognitavely, in spite of all the > physical, neurological, etc. impairements that our > children have to overcome. However, when she was > standing in the choir next to all the other " typical " > kids, I guess you visually saw the differences between > her and the others. This bothered you!!! Very > understandable. > > Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 That's closer to " it " ! And you're right, do I want her to be self-conscious?? No-- her confidence and " pure " joy is so wonderful for all of us -- it's probably what draws people to her. But, then, I do want her to fit in and be successful. And I worry about her future if she stands out and others don't accept her or doubt her abilities. I mean, she may be great at the technical skills of, say, being a receptionist. But would someone hire her if she's got all this other odd behavior that clients may find annoying? Or am I just looking for things to worry about? I guess I know that I don't need to borrow worry from the future. There's plenty in the here and now if I really feel the need to worry. But when her differences show up so blatantly, the fear hits me right square in the face. And the little oddities are things I don't know how to correct. Michele W Aubrie's mom Kim Lauger wrote: > Michele, > > It sounds to me like you are describing a lack of perception of social > norms. This is fine when they are little and we all think they are > adorable. Then they get older and society begins to judge and expect that > we all, including our precious children, know how to conform to the > norm. If > they don't conform they are perceived as weird or retarded or > whatever... My > sense is that is what you are concerned about. All the things that people > found charming before can suddenly lead to " being in trouble " . I see this > as more of a common CHARGE issue than actual cognition problems, such as > with MR. It is again a sensory issue and I think our kids sensory issues > are impacted in many ways, not just the obvious vision and hearing, but as > you've mentioned sensation of pain etc, vestibular, smell, ... plus the > nuances of social norms. Of course language helps to some degree to > explain > the norms, but I am not sure how to help them perceive the norms, and then > again do you want to? If they are confident with themselves, do you > want to > introduce doubt, but yet we want them to fit in. Boy, I sure > simplified it > for you, didn¹t I? > > And I bet she is one precious angel up there singing away with her whole > body. > > > Kim > > > > > > > > > To start this story, we are not a church-going family. However, the > > church right down the street has built a large wonderful community > > center. As a fundraiser before, during, and after construction, they > > have held monthly brunches with fabulous food. So we've been walking > > down for meals for probably a year or so. One of Aubrie's best friends > > from school goes there and loves for her to come to their functions. > > This school year, she's been going to their Wed youth program after > > school. You might recall that I was asking questions about an aid or > > help during that program. Anyway-- the kids performed with the choir in > > church today so we had to go to see her and she went to sunday school > > prior to church. Oh, she loved it!! It is such a welcoming church. > > Not one word to Mom and Dad about attending -- just lots of open arms > > for Aubrie to participate in kids' stuff. Now she's sure she wants to > > go every week cuz it was so much fun! In addition, I think the kids are > > singing with the choir again next Sun both in the am and eve. > > > > Aubrie was the most enthusiastic angel on the stage. She can't sing > > without rocking her head and swaying her body. And she does arm > > movements if they fit in plus she'll do a big 'hurrah " with her arms up > > at the end of a song. I swear she'll be on Broadway one day!! All the > > other kids were still as stone. > > > > During the school program earlier this week, she sang with the same > > full-body enthusiasm. The same good buddy from church was beside her on > > the crowded risers. He'd look down ocassionally and whisper seeming to > > tell her to be still. But he tolerated her swaying in his space quite > > well! He was telling her more for her own benefit than because it > > bothered him. > > > > As adorable as she is -- it does bother me when her differences are so > > apparent. I don't quite understand what it is that makes her behavior > > and " way of being " so different from the other kids. It's not just her > > physical differences. She's right up there with them cognitively. But > > she doesn't get embarrassed and be still like the others. Her eyes are > > wandering -- like in a way that is due to her visual impairments. Her > > whole body moves with the music. When the older kids were singing, her > > group was sitting and she was rocking big time. She is oblivious to the > > " ways you should behave " . > > Today we were writing in her Junie B Beeswax Journal. It's got > > pages with idea starters. She had no examples of things that make her > > scared or embarrassed - and I can't think of anything that she's really > > frightened of (except scary masks at Halloween) or embarrassed by. At > > first, she had no ideas of things that make her nervous -- until I > > brought up surgery, giving blood, and the dentist. > > She's just got an indescribable something that makes her very > > different. If I didn't know she was smart, I'd think she was mentally > > retarded. So apparently, what I have always thought of as stereotypical > > " retarded " behavior isn't that at all. Forgive my political > > incorrectness. I find it very difficult to find a graceful way to > > discuss cognitive impairments. Perhaps because I am fearful of them in > > Aubrie. Oh well... now we're getting deep, eh? > > > > If I better understood my questions, I'd ask them. But as it is, maybe > > someone can get a feeling for what I'm bothered about and help me get to > > the center of it. > > > > Michele W > > Aubrie's mom 7 yrs > > > > > > > > > > > > Membership of this email support groups does not constitute > membership in the > > CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > > Information will be available at our website > > www.chargesyndrome.org or by calling 1-. In Canada, you may > > contact CHARGE Syndrome Canada at 1- (families), visit > > www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Michele, We all know Aubrie has incredible gifts and her place in adult life will surface. For now she is in a community that loves and accepts and embraces her, just as she is. What a foundation for that mysterious future. Kim l > > That's closer to " it " ! And you're right, do I want her to be > self-conscious?? No-- her confidence and " pure " joy is so wonderful for > all of us -- it's probably what draws people to her. But, then, I do > want her to fit in and be successful. And I worry about her future if > she stands out and others don't accept her or doubt her abilities. I > mean, she may be great at the technical skills of, say, being a > receptionist. But would someone hire her if she's got all this other > odd behavior that clients may find annoying? Or am I just looking for > things to worry about? I guess I know that I don't need to borrow worry > from the future. There's plenty in the here and now if I really feel > the need to worry. But when her differences show up so blatantly, the > fear hits me right square in the face. And the little oddities are > things I don't know how to correct. > > Michele W > Aubrie's mom > > Kim Lauger wrote: > >> Michele, >> >> It sounds to me like you are describing a lack of perception of social >> norms. This is fine when they are little and we all think they are >> adorable. Then they get older and society begins to judge and expect that >> we all, including our precious children, know how to conform to the >> norm. If >> they don't conform they are perceived as weird or retarded or >> whatever... My >> sense is that is what you are concerned about. All the things that people >> found charming before can suddenly lead to " being in trouble " . I see this >> as more of a common CHARGE issue than actual cognition problems, such as >> with MR. It is again a sensory issue and I think our kids sensory issues >> are impacted in many ways, not just the obvious vision and hearing, but as >> you've mentioned sensation of pain etc, vestibular, smell, ... plus the >> nuances of social norms. Of course language helps to some degree to >> explain >> the norms, but I am not sure how to help them perceive the norms, and then >> again do you want to? If they are confident with themselves, do you >> want to >> introduce doubt, but yet we want them to fit in. Boy, I sure >> simplified it >> for you, didn¹t I? >> >> And I bet she is one precious angel up there singing away with her whole >> body. >> >> >> Kim >> >> >> >> >> >>> >>> To start this story, we are not a church-going family. However, the >>> church right down the street has built a large wonderful community >>> center. As a fundraiser before, during, and after construction, they >>> have held monthly brunches with fabulous food. So we've been walking >>> down for meals for probably a year or so. One of Aubrie's best friends >>> from school goes there and loves for her to come to their functions. >>> This school year, she's been going to their Wed youth program after >>> school. You might recall that I was asking questions about an aid or >>> help during that program. Anyway-- the kids performed with the choir in >>> church today so we had to go to see her and she went to sunday school >>> prior to church. Oh, she loved it!! It is such a welcoming church. >>> Not one word to Mom and Dad about attending -- just lots of open arms >>> for Aubrie to participate in kids' stuff. Now she's sure she wants to >>> go every week cuz it was so much fun! In addition, I think the kids are >>> singing with the choir again next Sun both in the am and eve. >>> >>> Aubrie was the most enthusiastic angel on the stage. She can't sing >>> without rocking her head and swaying her body. And she does arm >>> movements if they fit in plus she'll do a big 'hurrah " with her arms up >>> at the end of a song. I swear she'll be on Broadway one day!! All the >>> other kids were still as stone. >>> >>> During the school program earlier this week, she sang with the same >>> full-body enthusiasm. The same good buddy from church was beside her on >>> the crowded risers. He'd look down ocassionally and whisper seeming to >>> tell her to be still. But he tolerated her swaying in his space quite >>> well! He was telling her more for her own benefit than because it >>> bothered him. >>> >>> As adorable as she is -- it does bother me when her differences are so >>> apparent. I don't quite understand what it is that makes her behavior >>> and " way of being " so different from the other kids. It's not just her >>> physical differences. She's right up there with them cognitively. But >>> she doesn't get embarrassed and be still like the others. Her eyes are >>> wandering -- like in a way that is due to her visual impairments. Her >>> whole body moves with the music. When the older kids were singing, her >>> group was sitting and she was rocking big time. She is oblivious to the >>> " ways you should behave " . >>> Today we were writing in her Junie B Beeswax Journal. It's got >>> pages with idea starters. She had no examples of things that make her >>> scared or embarrassed - and I can't think of anything that she's really >>> frightened of (except scary masks at Halloween) or embarrassed by. At >>> first, she had no ideas of things that make her nervous -- until I >>> brought up surgery, giving blood, and the dentist. >>> She's just got an indescribable something that makes her very >>> different. If I didn't know she was smart, I'd think she was mentally >>> retarded. So apparently, what I have always thought of as stereotypical >>> " retarded " behavior isn't that at all. Forgive my political >>> incorrectness. I find it very difficult to find a graceful way to >>> discuss cognitive impairments. Perhaps because I am fearful of them in >>> Aubrie. Oh well... now we're getting deep, eh? >>> >>> If I better understood my questions, I'd ask them. But as it is, maybe >>> someone can get a feeling for what I'm bothered about and help me get to >>> the center of it. >>> >>> Michele W >>> Aubrie's mom 7 yrs >>> >>> >>> >>> >>> >>> Membership of this email support groups does not constitute >> membership in the >>> CHARGE Syndrome Foundation. >>> For information about the CHARGE Syndrome >>> Foundation or to become a member (and get the newsletter) >>> please contact marion@... or visit >>> the CHARGE Syndrome Foundation web page >>> at http://www.chargesyndrome.org >>> 7th International >>> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >>> Information will be available at our website >>> www.chargesyndrome.org or by calling 1-. In Canada, you may >>> contact CHARGE Syndrome Canada at 1- (families), visit >>> www.chargesyndrome.ca, or email info@.... Thank you! >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Michele, You make total sense. I think we all have the same feelings about our children.(well most of us)When I was reading your post I was so glad that I wasn't the only person who has felt that way.I totally relate to what you said. My son is so intelligent and cognitive right with his peers,but then he will do something that is so off the wall that I just don't understand it sometimes. Everyones future is unknown but for our children it's just a little more of a mystery-Kim A & gt; Michele, & gt; & gt; I think I understand how you felt. Correct me if I am & gt; totally off base here. & gt; & gt; You think your daughter is the most beautiful & gt; wonderful thing on this Earth,you enjoy and celebrate & gt; all her acheivements - cognitavely and physically. & gt; You are her best advocate, friend, supporter, etc. & gt; She is up there cognitavely, in spite of all the & gt; physical, neurological, etc. impairements that our & gt; children have to overcome. However, when she was & gt; standing in the choir next to all the other " typical " & gt; kids, I guess you visually saw the differences between & gt; her and the others. This bothered you!!! Very & gt; understandable. & gt; & gt; Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Thank you! What a great way to put my thoughts back in perspective! Just what I needed... Michele W Kim Lauger wrote: > Michele, > > We all know Aubrie has incredible gifts and her place in adult life will > surface. For now she is in a community that loves and accepts and > embraces > her, just as she is. What a foundation for that mysterious future. > > Kim l > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Kim- It's so good to know we're not alone in our feelings -- the good and the not-so-good. Michele W Kim wrote: > > > > > > Michele, You make total sense. I think we all have the same > feelings about our children.(well most of us)When I was reading your > post I was so glad that I wasn't the only person who has felt that > way.I totally relate to what you said. My son is so intelligent and > cognitive right with his peers,but then he will do something that is > so off the wall that I just don't understand it sometimes. Everyones > future is unknown but for our children it's just a little more of a > mystery-Kim A--- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Michele, Aubrie will find her place- and she will find a place deeper and more sincere by being different. It's tough to navigate being " different " . Sara's poor little face already sets her apart- and people cant believe it when I say she's nine months b/c she seems so listless to her surroundings. You really have to get close and spend time with her to get the best of her. I do believe even at my most optimistic that people are judgemental- but usually b/c they themselves are insecure... arent we all (insecure to some degree)? The people closest to Aubrie get the best of her- and anyone that doesnt get close is missing out. Its heartbreaking to think that our kids opportunities to make friends, or be successful could be limited by their abilities cognitively or otherwise- thats a real grief its probably healthy to mourn. Mark > > > > > > > > To start this story, we are not a church-going family. However, the > > > church right down the street has built a large wonderful community > > > center. As a fundraiser before, during, and after construction, they > > > have held monthly brunches with fabulous food. So we've been walking > > > down for meals for probably a year or so. One of Aubrie's best friends > > > from school goes there and loves for her to come to their functions. > > > This school year, she's been going to their Wed youth program after > > > school. You might recall that I was asking questions about an aid or > > > help during that program. Anyway-- the kids performed with the choir in > > > church today so we had to go to see her and she went to sunday school > > > prior to church. Oh, she loved it!! It is such a welcoming church. > > > Not one word to Mom and Dad about attending -- just lots of open arms > > > for Aubrie to participate in kids' stuff. Now she's sure she wants to > > > go every week cuz it was so much fun! In addition, I think the kids are > > > singing with the choir again next Sun both in the am and eve. > > > > > > Aubrie was the most enthusiastic angel on the stage. She can't sing > > > without rocking her head and swaying her body. And she does arm > > > movements if they fit in plus she'll do a big 'hurrah " with her arms up > > > at the end of a song. I swear she'll be on Broadway one day!! All the > > > other kids were still as stone. > > > > > > During the school program earlier this week, she sang with the same > > > full-body enthusiasm. The same good buddy from church was beside her on > > > the crowded risers. He'd look down ocassionally and whisper seeming to > > > tell her to be still. But he tolerated her swaying in his space quite > > > well! He was telling her more for her own benefit than because it > > > bothered him. > > > > > > As adorable as she is -- it does bother me when her differences are so > > > apparent. I don't quite understand what it is that makes her behavior > > > and " way of being " so different from the other kids. It's not just her > > > physical differences. She's right up there with them cognitively. But > > > she doesn't get embarrassed and be still like the others. Her eyes are > > > wandering -- like in a way that is due to her visual impairments. Her > > > whole body moves with the music. When the older kids were singing, her > > > group was sitting and she was rocking big time. She is oblivious to the > > > " ways you should behave " . > > > Today we were writing in her Junie B Beeswax Journal. It's got > > > pages with idea starters. She had no examples of things that make her > > > scared or embarrassed - and I can't think of anything that she's really > > > frightened of (except scary masks at Halloween) or embarrassed by. At > > > first, she had no ideas of things that make her nervous -- until I > > > brought up surgery, giving blood, and the dentist. > > > She's just got an indescribable something that makes her very > > > different. If I didn't know she was smart, I'd think she was mentally > > > retarded. So apparently, what I have always thought of as stereotypical > > > " retarded " behavior isn't that at all. Forgive my political > > > incorrectness. I find it very difficult to find a graceful way to > > > discuss cognitive impairments. Perhaps because I am fearful of them in > > > Aubrie. Oh well... now we're getting deep, eh? > > > > > > If I better understood my questions, I'd ask them. But as it is, maybe > > > someone can get a feeling for what I'm bothered about and help me get to > > > the center of it. > > > > > > Michele W > > > Aubrie's mom 7 yrs > > > > > > > > > > > > > > > > > > Membership of this email support groups does not constitute > > membership in the > > > CHARGE Syndrome Foundation. > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter) > > > please contact marion@c... or visit > > > the CHARGE Syndrome Foundation web page > > > at http://www.chargesyndrome.org > > > 7th International > > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > > > Information will be available at our website > > > www.chargesyndrome.org or by calling 1-. In Canada, you may > > > contact CHARGE Syndrome Canada at 1- (families), visit > > > www.chargesyndrome.ca, or email info@c... Thank you! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Michele, I don't have any professional answers, but having spent some time with Aubrie at the conference, my observation is she is just uninhibited. She " loves life to the fullest " . I wish more of us could be like that so it would be the " norm " and being still and somber was " unusual " . Just my thoughts. I am so glad she feels " at home " in so many places. It is far better she be outgoing then shy. Blessings and Hugs, Lynn Aubrie at church To start this story, we are not a church-going family. However, the church right down the street has built a large wonderful community center. As a fundraiser before, during, and after construction, they have held monthly brunches with fabulous food. So we've been walking down for meals for probably a year or so. One of Aubrie's best friends from school goes there and loves for her to come to their functions. This school year, she's been going to their Wed youth program after school. You might recall that I was asking questions about an aid or help during that program. Anyway-- the kids performed with the choir in church today so we had to go to see her and she went to sunday school prior to church. Oh, she loved it!! It is such a welcoming church. Not one word to Mom and Dad about attending -- just lots of open arms for Aubrie to participate in kids' stuff. Now she's sure she wants to go every week cuz it was so much fun! In addition, I think the kids are singing with the choir again next Sun both in the am and eve. Aubrie was the most enthusiastic angel on the stage. She can't sing without rocking her head and swaying her body. And she does arm movements if they fit in plus she'll do a big 'hurrah " with her arms up at the end of a song. I swear she'll be on Broadway one day!! All the other kids were still as stone. During the school program earlier this week, she sang with the same full-body enthusiasm. The same good buddy from church was beside her on the crowded risers. He'd look down ocassionally and whisper seeming to tell her to be still. But he tolerated her swaying in his space quite well! He was telling her more for her own benefit than because it bothered him. As adorable as she is -- it does bother me when her differences are so apparent. I don't quite understand what it is that makes her behavior and " way of being " so different from the other kids. It's not just her physical differences. She's right up there with them cognitively. But she doesn't get embarrassed and be still like the others. Her eyes are wandering -- like in a way that is due to her visual impairments. Her whole body moves with the music. When the older kids were singing, her group was sitting and she was rocking big time. She is oblivious to the " ways you should behave " . Today we were writing in her Junie B Beeswax Journal. It's got pages with idea starters. She had no examples of things that make her scared or embarrassed - and I can't think of anything that she's really frightened of (except scary masks at Halloween) or embarrassed by. At first, she had no ideas of things that make her nervous -- until I brought up surgery, giving blood, and the dentist. She's just got an indescribable something that makes her very different. If I didn't know she was smart, I'd think she was mentally retarded. So apparently, what I have always thought of as stereotypical " retarded " behavior isn't that at all. Forgive my political incorrectness. I find it very difficult to find a graceful way to discuss cognitive impairments. Perhaps because I am fearful of them in Aubrie. Oh well... now we're getting deep, eh? If I better understood my questions, I'd ask them. But as it is, maybe someone can get a feeling for what I'm bothered about and help me get to the center of it. Michele W Aubrie's mom 7 yrs Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 " I can't ignore the fact that some of her future is unknown. " Michele, The future for all of us is unknow. Fear of the future whether for ourselves or our children( CHARGE or " normal " ) is normal. When was in elementary school. She was different in lots of ways: very very tiny, strange voice, the only child in the whole school system at that time with hearing aids, absent very often and " home schooled " to keep up. I remember feeling a lot like you do. I just knew I was " in for the long haul " and held on tight. It's easy for me to say " hang on " because I have already been through what you are experiencing. I don't mean to make light of your situation. I understand your " fear " is real. Just know that there is a future for Aubrie and that you are doing your best to make it happen for her. Blessings and Hugs, Lynn Re: Aubrie at church Yes, that's it. But it feels so " big " that I guess I am wondering if there's more. Is it really just that simple that she's different? I think it's also the worry for her future that I can ignore daily. But when her differences are so blatant, I can't ignore the fact that some of her future is unknown. Does that make sense? Thanks for being a sounding board and helping me to sort out my feelings. Michele W Sirota wrote: > Michele, > > I think I understand how you felt. Correct me if I am > totally off base here. > > You think your daughter is the most beautiful > wonderful thing on this Earth,you enjoy and celebrate > all her acheivements - cognitavely and physically. > You are her best advocate, friend, supporter, etc. > She is up there cognitavely, in spite of all the > physical, neurological, etc. impairements that our > children have to overcome. However, when she was > standing in the choir next to all the other " typical " > kids, I guess you visually saw the differences between > her and the others. This bothered you!!! Very > understandable. > > Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Yuka, WOW! Our e-mail at work has been out all day; I wish I could have read this earlier so I could respond with something more pithy than, " Wow! " . and.... thank you. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Michele, I have not read ony responses to your post so I appologize if I repeat anything. I understand. And you know what, Patty understands. After meeting Patty now you know why I get so darned upset when people assume she is mentally retarded. It was a battle I continually fought against when she was in school and it is still something she fights. But because her voice is different, because she says " what " often, because she sits different, walks different... is different people assume things. Even specialists do. Most people though are just going on their own experiances. They have to be taught or they will continue on in life erronously. Patty knows she is disabled but it frustrates her when that is her " identity " . She struggles to have people understand she is a person first. So finding a way for that to come out is what she does. In the end when people get to know her they find she is very bright in many areas, she is funny, shes kind, she's determined, she is stubborn, ... She does have gaps, especially in math but she excells in other areas, especially intuition and/or reading if a person is kind or not. Aubrie is so much like Patty. It is going to take a hard stance from you sometimes and yet she will sometimes need that soft guidance. But because of your heart Aubrie will know she is a special young girl because of the respect you have for her as a person. You know there are times when Patty " fits the part. " It is especially apparent when she is frustrated, when her OCD is in overdrive, when " her skin doesn't fit " or just when she struggles to understand societies rules and expectations. Depending on the reason sometimes we just let it go but other times we have to show her societies rules. She doesn't like them but they are what they are. That is going to be one of your struggles as Aubrie grows but you will show her self confidance and pride along the way too. She has a strong spirit and she'll make it. There is so much more I want to say but I'll do that another time. Most of all though please understand we know how you feel. We are just now to the point where if people don't see the truth in Patty then they are the ones who are disabled. We move on. Take care, Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Bonnie, I love this response, especially the very last part. pam > ---------- > From: Turk22082@... > Reply To: CHARGE > Sent: Tuesday, December 14, 2004 6:06 AM > To: CHARGE > Subject: Re: Aubrie at church > > Michele, > > I have not read ony responses to your post so I appologize if I repeat > anything. > > I understand. And you know what, Patty understands. > > After meeting Patty now you know why I get so darned upset when people assume > she is mentally retarded. It was a battle I continually fought against when > she was in school and it is still something she fights. But because her voice > is different, because she says " what " often, because she sits different, > walks different... is different people assume things. Even specialists do. Most > people though are just going on their own experiances. They have to be taught > or they will continue on in life erronously. > > Patty knows she is disabled but it frustrates her when that is her > " identity " . She struggles to have people understand she is a person first. So finding > a way for that to come out is what she does. In the end when people get to > know her they find she is very bright in many areas, she is funny, shes kind, > she's determined, she is stubborn, ... She does have gaps, especially in math > but she excells in other areas, especially intuition and/or reading if a person > is kind or not. Aubrie is so much like Patty. It is going to take a hard > stance from you sometimes and yet she will sometimes need that soft guidance. > But because of your heart Aubrie will know she is a special young girl because > of the respect you have for her as a person. > > You know there are times when Patty " fits the part. " It is especially > apparent when she is frustrated, when her OCD is in overdrive, when " her skin > doesn't fit " or just when she struggles to understand societies rules and > expectations. Depending on the reason sometimes we just let it go but other times we > have to show her societies rules. She doesn't like them but they are what they > are. That is going to be one of your struggles as Aubrie grows but you will > show her self confidance and pride along the way too. She has a strong spirit > and she'll make it. > > There is so much more I want to say but I'll do that another time. Most of > all though please understand we know how you feel. We are just now to the > point where if people don't see the truth in Patty then they are the ones who are > disabled. We move on. > > > Take care, > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Michele, I have been stuck by the similarities between Aubrie, , and my nephew, who has Aspergers (on the autism spectrum, with high intelligence, but weird social reactions). There is no question Evan " experiences the world differently. " [that quote is from an amazing book called Thinking In Pictures : and Other Reports from My Life with Autism by Temple Grandin] Very into his own world, obsesses on things, will go on and on about obscure details of things, didn't need close friends in elementary school... and on and on. He is now in high school and has found friends and a niche with other " geeks " - but it has taken years of work by my brother and his family and by Evan himself. He has had to specifically learn about social interactions. We have been fortunate in that Evan is very verbal and able, at an intellectual level, to understand that he had to learn to get along in the world according to " society's " rules - which he found very " stupid " and rebelled against for a long time. He just doesn't pick things up by osmosis the way most of us do. It has been an ongoing struggle to mold his behavior to something he is comfortable with and yet doesn't look strange to others. Clearly Aubrie, at this stage, is comfortable with herself. It is when they get older and start to realize others don't see them the same way and care about that, that it becomes an issue for the kids. It's an issue for us parents much sooner. Clearly many kids with CHARGE also do not pick up " social graces " by osmosis - I suspect that is due to a combination of sensory deficits (the INPUT simply isn't there - for example poor distance vision to pick up on body language of others) and basic personality differences (Asperger-like, autistic-like, whatever you want to call it, but it's there in CHARGE) that make it difficult to process the input. How to help people learn what is " socially acceptable " without quashing personality.... I was hoping Sally Prouty would chime in on this discussion. If I recall correctly, she has talked about specifically teaching Andy some of those things -even to the extent of videotaping him so he could see himself as others see him. This is an area where the wisdom of the adults with CHARGE and the parents of older people with CHARGE is most welcome. Meg Meg Hefner MS Genetic Counselor St. Louis MO meg@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Dear Pam- Thank you so much for your kind and generous acknowledgments of my posts. As you can probably tell, I am struggling with words and emotions, trying to find the right words much like trying to paint my feelings with the right colors. Your replies always give me the visceral confirmation that allows me to give myself permission to " own " my own understanding in a place of peace. By simply feeling as though I have articulated the emotion well, it becomes peaceful for me. Thank you for mirroring back at me your gifted " listening " and granting me these opportunities for healing and growth. Writing for me is one part of the discovery and healing process. Having a voice call back " I get it. " is an equally important part for me as well. Thank you again, Yuka RE: Aubrie at church > > Yuka, > WOW! > Our e-mail at work has been out all day; I wish I could have read this earlier so I could respond with something more pithy than, " Wow! " . > > and.... thank you. > pam > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Michele, I have been reading and thinking of this post and have started to respond several times, but have stopped myself. And now I know why--you have gotten some of the most amazing reponses and I could not even begin to add anything more. That little sprite of yours is so very special and to think that others might not think so or is " weird " must be very hard. My advice: take to heart what everyone has said--I know I am!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Katrina- You're right that some of Aubrie's behaviors are like " blindisms " -- but she's not visually impaired enough to warrrant it -- at least I don't think so. But-- who knows? She can't accurately describe her vision to me. I wonder if she ever will since she can never know what I see in order to provide me with the comparison. I'm sure there are some things she doesn't pick up on both due to vision and hearing losses. Additionally, I can't help but think that her many life experiences shape her perspective and her behavior. She's been through and had to think about so many things that typical kids never do. I look forward to the day when I can better understand the whys of what she does. Michele W > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 You are so right. She does love life to the fullest. And she enjoys everything with her whole being. I hope that she keeps that as she matures. It is such a wonderful way to be. If she could hold on to that while still understanding social expectations -- then she could choose to " fit in " or not, all the while loving herself completely. She just knows nothing bad. She is full of gratitude, positivity, joy... With all she's been through, I don't know how negativity has been kept out of her. Michele W LEM wrote: > Michele, > I don't have any professional answers, but having spent some time > with Aubrie at the conference, my observation is she is just > uninhibited. She " loves life to the fullest " . I wish more of us > could be like that so it would be the " norm " and being still and > somber was " unusual " . Just my thoughts. > I am so glad she feels " at home " in so many places. It is far > better she be outgoing then shy. > Blessings and Hugs, > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 you know... when you've had umptyscrunch surgeries and shots and given blood on a very regular basis since you were born and your only seven -- what is left in the world to be afraid of? sounds to me like Aubrie knows what she thinks and feels and should or shouldn't be afraid of -- someday those social fears may crop up and maybe you'll have to give her social instruction... it kinda goes along with something someone else said in this group about mom's with kids in ICU thinking they aren't a part of it... the other mothers are so strong or something to that effect... it's just part of your world -- how much can Aubrey be afraid of when she knows what real fear is -- how concerned can her very young brain be about what all the other mommies and daddies think when her own are her world (i've never understood why other children are so 'socially consious' anyway) i know that kids have to learn to behave in a socially acceptable way sooner or later... but if she's an extraenthusiastic character on stage and the other kids are stock still out of nervousness well i say more power to her... of course i don't have any children of my own at all so i may be way off... but i'm just sayin... Aubrey sounds like an angel who's doin just fine with who she is in the world. and if the world has a problem with it then it is just that -- the world's problem. sorry... probably not my business... Cole On Tue, 14 Dec 2004 21:22:40 -0600, Michele Westmaas wrote: > Katrina- > You're right that some of Aubrie's behaviors are like " blindisms " -- but > she's not visually impaired enough to warrrant it -- at least I don't > think so. But-- who knows? She can't accurately describe her vision to > me. I wonder if she ever will since she can never know what I see in > order to provide me with the comparison. I'm sure there are some things > she doesn't pick up on both due to vision and hearing losses. > Additionally, I can't help but think that her many life experiences > shape her perspective and her behavior. She's been through and had to > think about so many things that typical kids never do. I look forward > to the day when I can better understand the whys of what she does. > > Michele W > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Yuka- I found truth in everything you said. I can picture Aubrie in each of the situations you described with -- maybe change the Mars and Digimon conversations to names, orphans, Tom Sawyer, etc. The part about feeling more comfortable with it if we could understand -- that was big for me. Until you said it, I hadn't realized that as part of the problem -- but I think it is. You also did well at sorting out " our " issues from the kids'. As Aubrie gets older, I need to be ready to separate from her more and more. Right now, she's still my little princess and we're quite connected. But I know she will be growing away from me. Time to start getting my mind and heart ready to separate her thoughts, feelings, and issues from my own. She definitely has the celebrity status going right now. I have been wondering when that will become a problem for her, or when it will wear off for everyone else. I really wonder how those little oddities will play out in adulthood. It's got me worried and anxious. But, as you said, why can't I trust the universe to accept her in all of her uniqueness? There are many folks who are quite successful who are not " normal " in one way or another. The book Meg mentioned, Thinking in Pictures, was great at showing how a person with something as severe as autism can find a way to use her unique skills to succeed in adult life. Her coworkers accepted her differences and her differences are what made her excel in her field. I can already see children in Aubrie's class that have that something that make them able to appreciate and understand her -- those kids will be adults with her -- so why don't I trust that they will be supportive of her then? There are so many angles to this discussion -- and I've got so much work to do -- that I must go... but you know it'll keep working in the back of mind! Michele W Aubrie's mom 7 yrs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Again -- so very well said!! This is exaclty how it is for me too -except I wouldn't have been able to say it! Hugs- Michele W Yuka Persico wrote: > Dear Pam- > > Thank you so much for your kind and generous acknowledgments of my posts. > As you can probably tell, I am struggling with words and emotions, > trying to > find the right words much like trying to paint my feelings with the right > colors. Your replies always give me the visceral confirmation that allows > me to give myself permission to " own " my own understanding in a place of > peace. By simply feeling as though I have articulated the emotion > well, it > becomes peaceful for me. Thank you for mirroring back at me your gifted > " listening " and granting me these opportunities for healing and growth. > Writing for me is one part of the discovery and healing process. Having a > voice call back " I get it. " is an equally important part for me as well. > > Thank you again, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Thanks Pam. Your acknowlegement (as someone who is not a CHARGE parent) is very meaningful. It's like your mom telling you all your life that you're wonderful, but it doesn't count as much until someone outside your family confirms it. Michele W > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Cole- What wisdom! I no longer find the little things annoying that used to be big to me -- messy closets, wrinkled clothes, etc. My friends still worry about " normal " stuff, but my whole measurement of what is to be worried about, etc is different now. Of course, Aubrie is growing up with a different measurement than her peers. I knew that her experiences shaped her views -- but you said it in a way that clarified that for me. Since my first post, I have been looking at some friends' kids who are socially self-conscious and I really feel sorry for them. A child shouldn't be holding back. I raised my son to be comfortable with who he is also -- and he's a wonderful kid who is not a follower, who can make choices that contradict what his peer group is doing, and who can be friends with kids from all the different social groups. I am proud of that in him -- and of course I want the same for Aubrie. We all butt in here whenever we have something to add -- even if the conversation isn't directed at us. Feel free to chime in anytime. I hope that we have all learned to be forgiving when someone (on the rarest of ocassions) says something we don't agree with. Usually it's a miscommunication rather than a truly hurtful intent. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Yuka, When Michele first sent her post, I knew you would have much to share and was looking forward to reading it. I was not disappointed. Kim > > Dear Pam- > > Thank you so much for your kind and generous acknowledgments of my posts. > As you can probably tell, I am struggling with words and emotions, trying to > find the right words much like trying to paint my feelings with the right > colors. Your replies always give me the visceral confirmation that allows > me to give myself permission to " own " my own understanding in a place of > peace. By simply feeling as though I have articulated the emotion well, it > becomes peaceful for me. Thank you for mirroring back at me your gifted > " listening " and granting me these opportunities for healing and growth. > Writing for me is one part of the discovery and healing process. Having a > voice call back " I get it. " is an equally important part for me as well. > > Thank you again, > > Yuka > > > > > RE: Aubrie at church > > >> >> Yuka, >> WOW! >> Our e-mail at work has been out all day; I wish I could have read this > earlier so I could respond with something more pithy than, " Wow! " . >> >> and.... thank you. >> pam >> >> > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
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