Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 bonnie yoru so right and only life can teach us these experiences cant it life has taught me many things oen of which is that i shouldnt be on here right bnow i should be in bed but im on here its 1030 at nigth and im reading this lol mums otu thats y what hapepnd to dad lol ellen > > Kristy, > > You are sadly walking the path Patty traveled. Know there is hope. Patty > is > incredibly social and confidant. > > I do have to say although I implement social stories for a few of my > students > and truly believe in them I would never have used any for Patty. > > The ways Patty learns is not by reading, reciting, or even discussing the > who > what where and when. Patty learns through EXPERIENCE! But the experience > has to be appropriate and facilitated. You then slowly step back bit by > bit, > then totally. Every once in a while you have to step back in, but that's > OK. > That is the crux of all of this! It is my belief that our children learn > almost everything through experience. > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 every time you post i see me and patty are quite alike in soem ways hmmmmmm our soical thing is one big likeness between us two what do you think ellen and kick me up the bum tell em to go to BED > > bonnie yoru so right and only life can teach us these experiences cant it > life has taught me many things oen of which is that i shouldnt be on here > right bnow i should be in bed but im on here its 1030 at nigth and im > reading this lol mums otu thats y what hapepnd to dad lol ellen > > > > > > Kristy, > > > > You are sadly walking the path Patty traveled. Know there is > > hope. Patty is > > incredibly social and confidant. > > > > I do have to say although I implement social stories for a few of my > > students > > and truly believe in them I would never have used any for Patty. > > > > The ways Patty learns is not by reading, reciting, or even discussing > > the who > > what where and when. Patty learns through EXPERIENCE! But the > > experience > > has to be appropriate and facilitated. You then slowly step back bit by > > bit, > > then totally. Every once in a while you have to step back in, but > > that's OK. > > That is the crux of all of this! It is my belief that our children > > learn > > almost everything through experience. > > > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 here i am again jsut tell em to go to bed im typing again im obsessed with this group and this subject kim sorry for this but you bringing this up hasnt stopped me from typing its made em type more lol well bonnie \you say patty obsesses over her friends i do that to if one isnt on msn or isnt talking to me ill think they hate me and they r like no we love you and also sometimes if they rnt on i think they dotn want me stupid little tings liek that maybe it improves with age and life experiences and now i realy should go to bed shouldtn i talk to you all in the morning ellen > > every time you post i see me and patty are quite alike in soem ways > hmmmmmm our soical thing is one big likeness between us two what do you > think ellen and kick me up the bum tell em to go to BED > > > > > > bonnie yoru so right and only life can teach us these experiences cant > > it life has taught me many things oen of which is that i shouldnt be on here > > right bnow i should be in bed but im on here its 1030 at nigth and im > > reading this lol mums otu thats y what hapepnd to dad lol ellen > > > > > > > > > > Kristy, > > > > > > You are sadly walking the path Patty traveled. Know there is > > > hope. Patty is > > > incredibly social and confidant. > > > > > > I do have to say although I implement social stories for a few of my > > > students > > > and truly believe in them I would never have used any for Patty. > > > > > > The ways Patty learns is not by reading, reciting, or even discussing > > > the who > > > what where and when. Patty learns through EXPERIENCE! But the > > > experience > > > has to be appropriate and facilitated. You then slowly step back bit > > > by bit, > > > then totally. Every once in a while you have to step back in, but > > > that's OK. > > > That is the crux of all of this! It is my belief that our children > > > learn > > > almost everything through experience. > > > > > > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 afford is teachign me that life stuff they r the best im back again not to self go to bed > > here i am again jsut tell em to go to bed im typing again im obsessed with > this group and this subject kim sorry for this but you bringing this up > hasnt stopped me from typing its made em type more lol well bonnie \you say > patty obsesses over her friends i do that to if one isnt on msn or isnt > talking to me ill think they hate me and they r like no we love you and also > sometimes if they rnt on i think they dotn want me stupid little tings liek > that maybe it improves with age and life experiences and now i realy should > go to bed shouldtn i talk to you all in the morning ellen > > > > > > every time you post i see me and patty are quite alike in soem ways > > hmmmmmm our soical thing is one big likeness between us two what do you > > think ellen and kick me up the bum tell em to go to BED > > > > > > > > > > bonnie yoru so right and only life can teach us these experiences cant > > > it life has taught me many things oen of which is that i shouldnt be on here > > > right bnow i should be in bed but im on here its 1030 at nigth and im > > > reading this lol mums otu thats y what hapepnd to dad lol ellen > > > > > > > > > > > > > > Kristy, > > > > > > > > You are sadly walking the path Patty traveled. Know there is > > > > hope. Patty is > > > > incredibly social and confidant. > > > > > > > > I do have to say although I implement social stories for a few of my > > > > students > > > > and truly believe in them I would never have used any for Patty. > > > > > > > > The ways Patty learns is not by reading, reciting, or even > > > > discussing the who > > > > what where and when. Patty learns through EXPERIENCE! But the > > > > experience > > > > has to be appropriate and facilitated. You then slowly step back > > > > bit by bit, > > > > then totally. Every once in a while you have to step back in, but > > > > that's OK. > > > > That is the crux of all of this! It is my belief that our children > > > > learn > > > > almost everything through experience. > > > > > > > > > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 if you see me on here again tonight kick me off right love you night > > i know i know i should of been of ten mins ago but im allso obsessed with > this comp anyoen obsessed with stuff liek that lol > > > > > > afford is teachign me that life stuff they r the best im back again not > > to self go to bed > > > > > > > > > > here i am again jsut tell em to go to bed im typing again im obsessed > > > with this group and this subject kim sorry for this but you bringing this up > > > hasnt stopped me from typing its made em type more lol well bonnie \you say > > > patty obsesses over her friends i do that to if one isnt on msn or isnt > > > talking to me ill think they hate me and they r like no we love you and also > > > sometimes if they rnt on i think they dotn want me stupid little tings liek > > > that maybe it improves with age and life experiences and now i realy should > > > go to bed shouldtn i talk to you all in the morning ellen > > > > > > > > > > > > > > every time you post i see me and patty are quite alike in soem ways > > > > hmmmmmm our soical thing is one big likeness between us two what do you > > > > think ellen and kick me up the bum tell em to go to BED > > > > > > > > > > > > > > > > > > bonnie yoru so right and only life can teach us these experiences > > > > > cant it life has taught me many things oen of which is that i shouldnt be on > > > > > here right bnow i should be in bed but im on here its 1030 at nigth and im > > > > > reading this lol mums otu thats y what hapepnd to dad lol ellen > > > > > > > > > > > > > > > > > > > > > > Kristy, > > > > > > > > > > > > You are sadly walking the path Patty traveled. Know there is > > > > > > hope. Patty is > > > > > > incredibly social and confidant. > > > > > > > > > > > > I do have to say although I implement social stories for a few > > > > > > of my students > > > > > > and truly believe in them I would never have used any for Patty. > > > > > > > > > > > > The ways Patty learns is not by reading, reciting, or even > > > > > > discussing the who > > > > > > what where and when. Patty learns through EXPERIENCE! But the > > > > > > experience > > > > > > has to be appropriate and facilitated. You then slowly step > > > > > > back bit by bit, > > > > > > then totally. Every once in a while you have to step back in, > > > > > > but that's OK. > > > > > > That is the crux of all of this! It is my belief that our > > > > > > children learn > > > > > > almost everything through experience. > > > > > > > > > > > > > > > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 i know i know i should of been of ten mins ago but im allso obsessed with this comp anyoen obsessed with stuff liek that lol > > afford is teachign me that life stuff they r the best im back again not to > self go to bed > > > > > > here i am again jsut tell em to go to bed im typing again im obsessed > > with this group and this subject kim sorry for this but you bringing this up > > hasnt stopped me from typing its made em type more lol well bonnie \you say > > patty obsesses over her friends i do that to if one isnt on msn or isnt > > talking to me ill think they hate me and they r like no we love you and also > > sometimes if they rnt on i think they dotn want me stupid little tings liek > > that maybe it improves with age and life experiences and now i realy should > > go to bed shouldtn i talk to you all in the morning ellen > > > > > > > > > > every time you post i see me and patty are quite alike in soem ways > > > hmmmmmm our soical thing is one big likeness between us two what do you > > > think ellen and kick me up the bum tell em to go to BED > > > > > > > > > > > > > > bonnie yoru so right and only life can teach us these experiences > > > > cant it life has taught me many things oen of which is that i shouldnt be on > > > > here right bnow i should be in bed but im on here its 1030 at nigth and im > > > > reading this lol mums otu thats y what hapepnd to dad lol ellen > > > > > > > > > > > > > > > > > > Kristy, > > > > > > > > > > You are sadly walking the path Patty traveled. Know there is > > > > > hope. Patty is > > > > > incredibly social and confidant. > > > > > > > > > > I do have to say although I implement social stories for a few of > > > > > my students > > > > > and truly believe in them I would never have used any for Patty. > > > > > > > > > > The ways Patty learns is not by reading, reciting, or even > > > > > discussing the who > > > > > what where and when. Patty learns through EXPERIENCE! But the > > > > > experience > > > > > has to be appropriate and facilitated. You then slowly step back > > > > > bit by bit, > > > > > then totally. Every once in a while you have to step back in, but > > > > > that's OK. > > > > > That is the crux of all of this! It is my belief that our > > > > > children learn > > > > > almost everything through experience. > > > > > > > > > > > > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 you wouldnt believe it but im off to bed night everyone talk tomorrow > > if you see me on here again tonight kick me off right love you night > > > > > > i know i know i should of been of ten mins ago but im allso obsessed > > with this comp anyoen obsessed with stuff liek that lol > > > > > > > > > > afford is teachign me that life stuff they r the best im back again > > > not to self go to bed > > > > > > > > > > > > > > here i am again jsut tell em to go to bed im typing again im > > > > obsessed with this group and this subject kim sorry for this but you > > > > bringing this up hasnt stopped me from typing its made em type more lol well > > > > bonnie \you say patty obsesses over her friends i do that to if one isnt on > > > > msn or isnt talking to me ill think they hate me and they r like no we love > > > > you and also sometimes if they rnt on i think they dotn want me stupid > > > > little tings liek that maybe it improves with age and life experiences and > > > > now i realy should go to bed shouldtn i talk to you all in the morning ellen > > > > > > > > > > > > > > > > > > > > > > every time you post i see me and patty are quite alike in soem > > > > > ways hmmmmmm our soical thing is one big likeness between us two what do you > > > > > think ellen and kick me up the bum tell em to go to BED > > > > > > > > > > > > > > > > > > > > > > bonnie yoru so right and only life can teach us these > > > > > > experiences cant it life has taught me many things oen of which is that i > > > > > > shouldnt be on here right bnow i should be in bed but im on here its 1030 at > > > > > > nigth and im reading this lol mums otu thats y what hapepnd to dad lol ellen > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Kristy, > > > > > > > > > > > > > > You are sadly walking the path Patty traveled. Know there is > > > > > > > hope. Patty is > > > > > > > incredibly social and confidant. > > > > > > > > > > > > > > I do have to say although I implement social stories for a few > > > > > > > of my students > > > > > > > and truly believe in them I would never have used any for > > > > > > > Patty. > > > > > > > > > > > > > > The ways Patty learns is not by reading, reciting, or even > > > > > > > discussing the who > > > > > > > what where and when. Patty learns through EXPERIENCE! But > > > > > > > the experience > > > > > > > has to be appropriate and facilitated. You then slowly step > > > > > > > back bit by bit, > > > > > > > then totally. Every once in a while you have to step back in, > > > > > > > but that's OK. > > > > > > > That is the crux of all of this! It is my belief that our > > > > > > > children learn > > > > > > > almost everything through experience. > > > > > > > > > > > > > > > > > > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 if someone lets me go oflien that is > > you wouldnt believe it but im off to bed night everyone talk tomorrow > > > > > > if you see me on here again tonight kick me off right love you night > > > > > > > > > > i know i know i should of been of ten mins ago but im allso obsessed > > > with this comp anyoen obsessed with stuff liek that lol > > > > > > > > > > > > > > afford is teachign me that life stuff they r the best im back again > > > > not to self go to bed > > > > > > > > > > > > > > > > > > here i am again jsut tell em to go to bed im typing again im > > > > > obsessed with this group and this subject kim sorry for this but you > > > > > bringing this up hasnt stopped me from typing its made em type more lol well > > > > > bonnie \you say patty obsesses over her friends i do that to if one isnt on > > > > > msn or isnt talking to me ill think they hate me and they r like no we love > > > > > you and also sometimes if they rnt on i think they dotn want me stupid > > > > > little tings liek that maybe it improves with age and life experiences and > > > > > now i realy should go to bed shouldtn i talk to you all in the morning ellen > > > > > > > > > > > > > > > > > > > > > > > > > > > every time you post i see me and patty are quite alike in soem > > > > > > ways hmmmmmm our soical thing is one big likeness between us two what do you > > > > > > think ellen and kick me up the bum tell em to go to BED > > > > > > > > > > > > > > > > > > > > > > > > > > bonnie yoru so right and only life can teach us these > > > > > > > experiences cant it life has taught me many things oen of which is that i > > > > > > > shouldnt be on here right bnow i should be in bed but im on here its 1030 at > > > > > > > nigth and im reading this lol mums otu thats y what hapepnd to dad lol ellen > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Kristy, > > > > > > > > > > > > > > > > You are sadly walking the path Patty traveled. Know there > > > > > > > > is hope. Patty is > > > > > > > > incredibly social and confidant. > > > > > > > > > > > > > > > > I do have to say although I implement social stories for a > > > > > > > > few of my students > > > > > > > > and truly believe in them I would never have used any for > > > > > > > > Patty. > > > > > > > > > > > > > > > > The ways Patty learns is not by reading, reciting, or even > > > > > > > > discussing the who > > > > > > > > what where and when. Patty learns through EXPERIENCE! But > > > > > > > > the experience > > > > > > > > has to be appropriate and facilitated. You then slowly step > > > > > > > > back bit by bit, > > > > > > > > then totally. Every once in a while you have to step back > > > > > > > > in, but that's OK. > > > > > > > > That is the crux of all of this! It is my belief that our > > > > > > > > children learn > > > > > > > > almost everything through experience. > > > > > > > > > > > > > > > > > > > > > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 Ellen- Yes, I think much of the topics we discuss should be in the manual. As Meg said recently, the Manual is already 300 pages. I know that they try to get all pertinent info in there. But it's just not possible to include everything. That's why new parents and professionals need to also join the list and search the archives. The Manual is an important start, but we're an important addition or follow-up. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 Kim, Me too. My other children have given Tyler companionship, but they are so much younger. He still will socially isolate himself in his room, and he is totally fine with that. " I just want to be with animals, " he says. Tyler is a gift. He is funny and charming. The adults see it, his classmates just don't take the time. I don't think they are willing to look past the negative behaviors or inappropriate behaviors (like wiping his nose on his sleeve instead of getting a kleenex--I have tried for years to correct that behavior). He gets fixated on his likes and wants to talk about them and that will dominate a conversation. He doesn't know how to do something that another person wants to do because he has never had that kind of a friend or opportunity. We have only discussed it. We have had him change and play differently with his little brother, but that is the extent of it--and that is with a lot of protest Kim, I just applaud you and the others for being so much further along than I am. I am amazed at how many advocates there are on this board. You all have your " acts " together while your children are young. When Tyler was still little and trached and ill, I was just trying to get through the days and learn all I could. I guess after he was a year I went into nursing too, that made me more busy. I am amazed at you all. You should all be proud of the accomplishments that you are making. Your children are going to benefit because of the efforts you put forth. It just seems like there is always so many other things going on too. Again, I applaud you all. Because of my inconsistency, I am now " scared, " when looking at his future. What is his full potential? The " CHARGE " expert at the School for the Deaf in Indy was harsh and burst my bubble. Independence in her eyes could just be working at a zoo and not going to college. She was destroying my dreams before ever meeting him. I didn't like that a child that could hear would not be allowed to speak. He has the moderate-severe loss bilaterally. That would be a problem for him. There response was, " he'll adjust. " The school of the Blind didn't have any kids with CHARGE and when I talked about behavior issues, the gals response was, " we have other kids with vision syndromes that have behavior problems. " That rubbed me the wrong way. Not good enough. She copied Perkins paperwork because they didn't have anything to send parents. They were supposedly " in progress. " At this point, I don't know who else other than Perkins that can give me some answers. I will go there ready to hear what they have to say. Kristy RE: Social development > > > > Yuka- > Interesting. At a training this weekend, the speaker talked about the need > for inclusion because kids who grow up in spec ed only learn how to > socialize in special ed. They don't learn the " normal " social skills that > happen in a regular setting. And if they do learn it -as in getting taught > as part of their plan - they don't get enough opportunities to practice it > on a regular basis in regular settings. > > In my core, I know that I believe in full inclusion for all kids and adults > in school, work, and the community. How that can truly work for everyone is > what I struggle with. If we had all the money in the world to put in place > all the supports necessary, it could be a beautiful thing. > > Michele W > Aubrie's mom > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@...<mailto:marion@...<mailto:marion@charges\ yndrome.org> or > visit > the web site at http://www.chargesyndrome.org<http://www.chargesyndrome.org/<http://www.chargesy\ ndrome.org<http://www.chargesyndrome.org/>> > - for CHARGE Syndrome Canada information and membership, please visit > http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/<http://www.chargesynd\ rome.ca<http://www.chargesyndrome.ca/>> or email > info@...<mailto:info@...<mailto:infochargesyndrome (DOT) \ ca> . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org<http://www.chargesyndrome.org/<http://www.chargesyndrome.\ org<http://www.chargesyndrome.org/>> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 Michele, I was thinking about this in relationship to Tyler. He has not made any new relationships in the last two years. We changed schools in the hopes of making " a clean slate " and fostering new friendships. Public Education at its finest--they just don't get it. Anyway, one day I accidentally made a comment to Tyler about not having any friends and he quickly corrected me, " Yes I do: , Grant, and Connor. " These are kids from the Hearing-Impaired School in two years ago. He has not seen any of those kids since he left fourth grade, but to him they are very much his friends! I believe it goes along with what both you and Pam said. I am going to try to put my spin on it. I don't believe that our CHARGErs internalize what the societal norm for friendship is: the deep, meaningful relationship. I am speaking of when our children are younger. I don't know what happens as the reach adulthood. Tyler is happy just being by himself, as Pam mentioned, but he also loves the company of adults. Adults are forgiving of social blunders, peers are not. Adults are patient and will allow a child to dominate a conversation, a peer will not. In Tyler's case, he needs some peer to really take an interest in him (and have the same hobbies). This peer needs to be honest with Tyler about his social blunders. Ex: " Tyler, don't wipe your nose on your shirt--that's gross, man. " I THINK Tyler would respond to someone he wants to be around. This is merely a hypothesis. A dream. Kristy's two cents RE: Social development Pam & Kim- Yes -- this is an important piece -- how much do they crave the friendships and how much is it just that we think they must? On the one hand, Aubrie is hugely social and loves her friends. I think she'd be devastated if she felt friendless or if one of her friends were mean to her. But she doesn't need them in the same way that I did at her age -- she doesn't rely on them for her validation -- she doesn't need their input every day -- she doesn't need them to have fun. She needs them in her life, but in a different role than the way that I need my friends. Again, hard to describe, but do you hear what I'm getting at?? Maybe one of you can say it more clearly. This morning, Aubrie told me that one of the boys at school was calling her stupid yesterday. This is a difficult kid who, I think, has been seated next to Aubrie as a strategy to help him. She invited him to her birthday party but he didn't come. When I asked what she did, she said she just ignored him cuz that's a bad word and she didn't want to say it back. When asked how it made her feel, she said bad. So we talked about telling him that it makes her feel bad when he says that and friends don't hurt each other. I'm not sure what she'll do today if he does it again. I don't think she took it personally. She seems to get that some kids just do naughty things. This kid is one of them. My guess is that she's not the only one he's mean to -- in fact, he's probably spared her up until now. So I was pleased that she seems secure enough in herself not to take his words as a personal attack. Enough... but this is an important topic to continue exploring. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 Kristy- What you are saying makes sense to me. Aubrie does have friends that are socially honest with her. For example, at the school Christmas program last year, one friend told her, very nicely, that she needed to be still on the risers -- her rocking was not a good thing there. This year, she remembered his suggestion and planned ahead to control her movements. She did a great job! She was still swaying much more than any others -- most kids were rigidly still. But she was controlling it from her norm. Her friends remind her stop rocking, they take time to listen to what she is saying and hear her interests, they are patient when she is slower in activities, they are patient when she knocks the game pieces over in her clumsiness... I hadn't thought of it til you mentioned it, but she does have a few true friends in that regard. That said, I think of a friend whose adult son has developmental disabilties. He will call and talk about " my best friend, you-know-who " . His mom will laugh because the person can't be your " best friend " if you don't know their name! But in this man's mind, many people are " best " friends -- with no real understanding of what that means for the rest of us. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 Kristy, If it is any reassurance, I think we are all inconsistent to a degree. I work for a developmental psychologist who is of the Applied behavior analysis school of thinking. There are times he recommends things, and I think to myself, yes, I could do that if it were all I had to do, to be there are respond in just the right way at just the right time, in a controlled environment. But we all live in homes, not behavior labs. We need to work to earn a living, to cook, to clean, to care for our other children, and maybe even do something for our selves. And then there is the truth that life happens and as the song says, " life happens when you are busy making other plans " . In the midst of that life, there are so many priorities, but only so much that can be done, so the priority that rises to the top changes over time. Perhaps now the priority is what you can to find a better place for your Tyler, where other times just having him healthy and in school all day may have been a huge accomplishment. With all that said, again, I do hope Perkins has answers for you! Kim > Kim, > > Me too. My other children have given Tyler companionship, but they are so > much younger. He still will socially isolate himself in his room, and he is > totally fine with that. " I just want to be with animals, " he says. > > Tyler is a gift. He is funny and charming. The adults see it, his classmates > just don't take the time. I don't think they are willing to look past the > negative behaviors or inappropriate behaviors (like wiping his nose on his > sleeve instead of getting a kleenex--I have tried for years to correct that > behavior). He gets fixated on his likes and wants to talk about them and that > will dominate a conversation. He doesn't know how to do something that > another person wants to do because he has never had that kind of a friend or > opportunity. We have only discussed it. We have had him change and play > differently with his little brother, but that is the extent of it--and that is > with a lot of protest > > Kim, I just applaud you and the others for being so much further along than I > am. I am amazed at how many advocates there are on this board. You all have > your " acts " together while your children are young. When Tyler was still > little and trached and ill, I was just trying to get through the days and > learn all I could. I guess after he was a year I went into nursing too, that > made me more busy. I am amazed at you all. You should all be proud of the > accomplishments that you are making. Your children are going to benefit > because of the efforts you put forth. It just seems like there is always so > many other things going on too. Again, I applaud you all. > > Because of my inconsistency, I am now " scared, " when looking at his future. > What is his full potential? The " CHARGE " expert at the School for the Deaf in > Indy was harsh and burst my bubble. Independence in her eyes could just be > working at a zoo and not going to college. She was destroying my dreams > before ever meeting him. I didn't like that a child that could hear would not > be allowed to speak. He has the moderate-severe loss bilaterally. That would > be a problem for him. There response was, " he'll adjust. " > The school of the Blind didn't have any kids with CHARGE and when I talked > about behavior issues, the gals response was, " we have other kids with vision > syndromes that have behavior problems. " That rubbed me the wrong way. Not > good enough. She copied Perkins paperwork because they didn't have anything > to send parents. They were supposedly " in progress. " > > At this point, I don't know who else other than Perkins that can give me some > answers. I will go there ready to hear what they have to say. > > Kristy > > > RE: Social development >> >> >> >> Yuka- >> Interesting. At a training this weekend, the speaker talked about the need >> for inclusion because kids who grow up in spec ed only learn how to >> socialize in special ed. They don't learn the " normal " social skills that >> happen in a regular setting. And if they do learn it -as in getting taught >> as part of their plan - they don't get enough opportunities to practice it >> on a regular basis in regular settings. >> >> In my core, I know that I believe in full inclusion for all kids and adults >> in school, work, and the community. How that can truly work for everyone is >> what I struggle with. If we had all the money in the world to put in place >> all the supports necessary, it could be a beautiful thing. >> >> Michele W >> Aubrie's mom >> >> >> >> >> Membership of this email support groups does not constitute membership in the >> CHARGE Syndrome Foundation or CHARGE Syndrome Canada. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter), >> please contact >> marion@...<mailto:marion@...<mailto:marion@char >> gesyndrome.org> or >> visit >> the web site at >> http://www.chargesyndrome.org<http://www.chargesyndrome.org/<http://www.charg >> esyndrome.org<http://www.chargesyndrome.org/>> >> - for CHARGE Syndrome Canada information and membership, please visit >> http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/<http://www.charges >> yndrome.ca<http://www.chargesyndrome.ca/>> or email >> info@...<mailto:info@...<mailto:info@chargesyndro >> me.ca> . >> 8th International >> CHARGE Syndrome Conference, July, 2007. Information will be available at >> www.chargesyndrome.org<http://www.chargesyndrome.org/<http://www.chargesyndro >> me.org<http://www.chargesyndrome.org/>> or by calling >> 1-. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 Kristy, Sometimes dreams come true! Maybe not the exact way you thought, but they come in other wonderful ways. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 theres a song be carful what you dream of it just might come true > > Kristy, > > Sometimes dreams come true! Maybe not the exact way you thought, but they > come in other wonderful ways. > > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2005 Report Share Posted December 19, 2005 Kim, Thanks. Maybe I needed a little break. I had the busy trach time without any nursing help for two and a half years and then focused on trying on getting him to eat. Then needed to learn about IEPs. I guess I had the other two children and was able to enjoy all three and trying to be a family and only taking care of one or two operations during that time period. Less stressful. I think it was okay to be that " family. " Tyler actually has playmates. If it weren't for them he wouldn't have any exposure to kids (except for cousins on get-togethers). Thanks again for your remarks. I save all of the threads that pertain to Tyler. It is my personalized CHARGE manual It is the perfect reference. Kristy RE: Social development >> >> >> >> Yuka- >> Interesting. At a training this weekend, the speaker talked about the need >> for inclusion because kids who grow up in spec ed only learn how to >> socialize in special ed. They don't learn the " normal " social skills that >> happen in a regular setting. And if they do learn it -as in getting taught >> as part of their plan - they don't get enough opportunities to practice it >> on a regular basis in regular settings. >> >> In my core, I know that I believe in full inclusion for all kids and adults >> in school, work, and the community. How that can truly work for everyone is >> what I struggle with. If we had all the money in the world to put in place >> all the supports necessary, it could be a beautiful thing. >> >> Michele W >> Aubrie's mom >> >> >> >> >> Membership of this email support groups does not constitute membership in the >> CHARGE Syndrome Foundation or CHARGE Syndrome Canada. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter), >> please contact >> marion@...<mailto:marion@...<mailto:marion@char<ma\ ilto:marion@...<mailto:marion@...<mailto:marion@ch\ ar> >> gesyndrome.org<mailto:marion@...<mailto:marion@...\ >>> or >> visit >> the web site at >> http://www.chargesyndrome.org<http://www.chargesyndrome.org/<http://www.charg<ht\ tp://www.chargesyndrome.org<http://www.chargesyndrome.org/<http://www.charg> >> esyndrome.org<http://www.chargesyndrome.org/<http://www.chargesyndrome.org/>>> >> - for CHARGE Syndrome Canada information and membership, please visit >> http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/<http://www.charges<ht\ tp://www.chargesyndrome.ca<http://www.chargesyndrome.ca/<http://www.charges> >> yndrome.ca<http://www.chargesyndrome.ca/<http://www.chargesyndrome.ca/>>> or email >> info@...<mailto:info@...<mailto:info@chargesyndro<ma\ ilto:info@...<mailto:info@...<mailto:info@chargesynd\ ro> >> me.ca>> . >> 8th International >> CHARGE Syndrome Conference, July, 2007. Information will be available at >> www.chargesyndrome.org<http://www.chargesyndrome.org/<http://www.chargesyndro<ht\ tp://www.chargesyndrome.org<http://www.chargesyndrome.org/<http://www.chargesynd\ ro> >> me.org<http://www.chargesyndrome.org/<http://www.chargesyndrome.org/>>> or by calling >> 1-. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2005 Report Share Posted December 19, 2005 Bonnie, This is something that I need to hear too. Thanks. Kristy Re: Social development Kristy, Sometimes dreams come true! Maybe not the exact way you thought, but they come in other wonderful ways. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
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