Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Thanks for all that Mandi. Much appreciated. As for what being non-verbal feels like, I'd guess it's different for me as an adult who lost many verbal and processing skills as an adult than for a child who lost them as a toddler. Besides which I have language skills, and a something like a heiracrchy of difficulty with typing being the easiest and face to face conversation with people I have strong emotions for being the toughest (other than with my husband, haven't had face to face contact with friends or family for more than 2 years). Anyway, in my situation the strongest feelings are sadness for the loss, separateness, isolation. Most powerfully a profound sense that I am unable to express or to be the person I am, so sometimes frustration at being grossly misrepresented and not able to set that straight. Guess I should've said that trying to understand and communicate verbally frequently causes me acute brain pain, very occasionally it seems like brain damage, and it's that not mechanical issues which most limit me. Likely Sam's situation is very different, but shout if you'd like more. Jacqui > Need to watch the surrogate tapping ones next so I can do something for Sam > but mega busy and need time to concentrate on that one. I did tap Sam after I > replied to you the other day but I am not sure I can wrap my head around > feeling whats its like to be non verbal, he thought I was mad doing it but was > super clam afterwards.............hmmmmmmmm > > _www.emofree.com_ (http://www.emofree.com) > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 Hi Jacqui I hope you don't mind me butting in. My son lost all his speech between ages 3 and 4 and a bit, having been really chatty. He started regaining it two years ago - but he is still single words. He simply can't construct a sentence and we think it's much better and more useful to have a wide vocabulary of single words than to try too hard for sentences. He uses words to tell us what he wants - that's a big step. What we find is that he can spontaneously ask for things but finds it really hard to access the right word " on demand " . It's a bit like a badly tuned radio - sometimes he'll come out with a whole phrase but only spontaneously. And then he seems as surprised as we do. Is that how you find it? He gets very sad about his lack of ability to ask for things. It's what made me so mad about the campaign last year saying " this boy chooses not to speak " because that simply isn't my experience with Tom. He loves speaking, he beams with pride when he says something and people respond, he even makes sort of jokes now. Are there circumstances where you find it easier or harder to access language? Steph > > Thanks for all that Mandi. Much appreciated. > > As for what being non-verbal feels like, I'd guess it's different for > me as an adult who lost many verbal and processing skills as an adult > than for a child who lost them as a toddler. Besides which I have > language skills, and a something like a heiracrchy of difficulty with > typing being the easiest and face to face conversation with people I > have strong emotions for being the toughest (other than with my > husband, haven't had face to face contact with friends or family for > more than 2 years). > > Anyway, in my situation the strongest feelings are sadness for the > loss, separateness, isolation. Most powerfully a profound sense that > I am unable to express or to be the person I am, so sometimes > frustration at being grossly misrepresented and not able to set that > straight. Guess I should've said that trying to understand and > communicate verbally frequently causes me acute brain pain, very > occasionally it seems like brain damage, and it's that not mechanical > issues which most limit me. > > Likely Sam's situation is very different, but shout if you'd like > more. > > Jacqui > > > > Need to watch the surrogate tapping ones next so I can do something > for Sam > > but mega busy and need time to concentrate on that one. I did tap > Sam after I > > replied to you the other day but I am not sure I can wrap my head > around > > feeling whats its like to be non verbal, he thought I was mad > doing it but was > > super clam afterwards.............hmmmmmmmm > > > > _www.emofree.com_ (http://www.emofree.com) > > > > Mandi x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 As for what being non-verbal feels like, I'd guess it's different for me as an adult who lost many verbal and processing skills as an adult than for a child who lost them as a toddler. Besides which I have language skills, and a something like a heiracrchy of difficulty with typing being the easiest and face to face conversation with people I have strong emotions for being the toughest (other than with my husband, haven't had face to face contact with friends or family for more than 2 years).Anyway, in my situation the strongest feelings are sadness for the loss, separateness, isolation. Most powerfully a profound sense that I am unable to express or to be the person I am, so sometimes frustration at being grossly misrepresented and not able to set that straight. Guess I should've said that trying to understand and communicate verbally frequently causes me acute brain pain, very occasionally it seems like brain damage, and it's that not mechanical issues which most limit me. >>Jacqui thank you soooo much for sharing, this helps a lot and the also posts where you replied to others on the same subject. Given me lots to think about, planning to think at weekend inbetwen HANDLE sessions! Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 Hi Steph, Yeah, I recognise what you're saying about Tom. Accessing words on demand is harder, it's like I just have to let it happen. Sometimes... no pretty often when trying to access a word that's not coming, I'll have a shape or a feeling for what I want to say and I know when I get to the point when I'm trying to put a name to the word shape, that I should stop immediately and forget about it. For me trying to force it never works. It *is* like trying to tune a radio that can't receive the channel. If it's quiet outside I find conversation easier there than inside. I'm generally less symptomatic outside but I think there's also less echo or rebound of sound. Also speaking on my own terms much easier than conversation. If it's a conversation I have to process what someone says, process body language, understand it all and come up with a response. Similarly with routine conversations. So I can ask for a bus ticket, or thank the postie for a parcel, but if they ask me anything I'm usually done for... unless i just say yes and hope for the best! Though it's not necessarily easy I can often coverse a bit with my husband. If we were out somewhere I would usually ensure I'm in a corner and that all the sound came from one direction. Simililarly at home if there's a tap running or a radio on then I won't attempt to speak or listen until they are off. Inside places that are unfamiliar are trickier,mostly impossible, becuase I'm trying to understand and process my surroundings, visually and aurally, but also there can be different smells or chemicals that really throw me. Talking about my emotions or feelings, or anything that's intuative or stream of consciousness is easier too. It feels like it comes from a less affected part of my brain. I guess the short answer is that the more non-word items there are to process or screen out, the trickier words and conversation are. Even writing is much harder than typing. It's hard for me to accept that most nonverbal people choose not to speak. It seems a bizarre idea rooted in ignorance. Not that I'm opinionated or anything! I'm sure some people are happier not to speak, but to me it seems the most effective way or expressing who we are, of choosing what makes us happy and fulfilled, of spending time and communicating with those we love, and so much more. I'm a very physical person, I love to be active but if I thought it would get my 'true voice' back I'd trade in a couple of limbs in flash- wouldn't think twice. I really admire the parents here, who really try to understand what might be happening to their children, keep working to improve their children's health and bring out more of their potential. I'm only too aware that if I were a child in an average family I would likely be drugged up to the eyeballs. It's a sobering thought. Diatribe over :-) Jacqui > > > > Thanks for all that Mandi. Much appreciated. > > > > As for what being non-verbal feels like, I'd guess it's different for > > me as an adult who lost many verbal and processing skills as an adult > > than for a child who lost them as a toddler. Besides which I have > > language skills, and a something like a heiracrchy of difficulty with > > typing being the easiest and face to face conversation with people I > > have strong emotions for being the toughest (other than with my > > husband, haven't had face to face contact with friends or family for > > more than 2 years). > > > > Anyway, in my situation the strongest feelings are sadness for the > > loss, separateness, isolation. Most powerfully a profound sense that > > I am unable to express or to be the person I am, so sometimes > > frustration at being grossly misrepresented and not able to set that > > straight. Guess I should've said that trying to understand and > > communicate verbally frequently causes me acute brain pain, very > > occasionally it seems like brain damage, and it's that not mechanical > > issues which most limit me. > > > > Likely Sam's situation is very different, but shout if you'd like > > more. > > > > Jacqui > > > > > > > Need to watch the surrogate tapping ones next so I can do something > > for Sam > > > but mega busy and need time to concentrate on that one. I did tap > > Sam after I > > > replied to you the other day but I am not sure I can wrap my head > > around > > > feeling whats its like to be non verbal, he thought I was mad > > doing it but was > > > super clam afterwards.............hmmmmmmmm > > > > > > _www.emofree.com_ (http://www.emofree.com) > > > > > > Mandi x > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 I really appreciate this. I have conversations with TOm where he knows I'm not expecting an answer but I'm trying to make clear that I appreciate his opinion. Sometimes it works sometimes not. Sometimes he is just like a friendly silent but appreciative presence. Which is cool but it means he gets my opinions not his. He LOVES to use his voice outdoors, perhaps that's another reason why summer is so much more successful in many households with autism. He will shout and roar outdoors but speak in a very low tone indoors, low in note as well as volume, very deep voice for a 10 year old!! He has a good SALT at school - she is all for providing the right environment and letting it flow when it's ready. I wish so much he would use hte computer, his fine motor is not great. It would really help him, to tell us how he feels, tell us off, what he wants precisely and so on. He's been without his skills now for longer than he was with them. By some margin. Yet when language pops out sometimes it's from when he was 2. Scripting the NOrth west weather jingle (Granada Weather!) when we've lived away from that TV provider since 2001, for example. Steph x > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > As for what being non-verbal feels like, I'd guess it's different > for > > > me as an adult who lost many verbal and processing skills as an > adult > > > than for a child who lost them as a toddler. Besides which I > have > > > language skills, and a something like a heiracrchy of difficulty > with > > > typing being the easiest and face to face conversation with > people I > > > have strong emotions for being the toughest (other than with my > > > husband, haven't had face to face contact with friends or family > for > > > more than 2 years). > > > > > > Anyway, in my situation the strongest feelings are sadness for > the > > > loss, separateness, isolation. Most powerfully a profound sense > that > > > I am unable to express or to be the person I am, so sometimes > > > frustration at being grossly misrepresented and not able to set > that > > > straight. Guess I should've said that trying to understand and > > > communicate verbally frequently causes me acute brain pain, very > > > occasionally it seems like brain damage, and it's that not > mechanical > > > issues which most limit me. > > > > > > Likely Sam's situation is very different, but shout if you'd like > > > more. > > > > > > Jacqui > > > > > > > > > > Need to watch the surrogate tapping ones next so I can do > something > > > for Sam > > > > but mega busy and need time to concentrate on that one. I did > tap > > > Sam after I > > > > replied to you the other day but I am not sure I can wrap my > head > > > around > > > > feeling whats its like to be non verbal, he thought I was mad > > > doing it but was > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > _www.emofree.com_ (http://www.emofree.com) > > > > > > > > Mandi x > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2008 Report Share Posted September 25, 2008 Steph, if i were your child everything you're doing re verbal communication sounds great- very supportive, helpful and encouraging. The picture you gave me in the previous post of Tom now being able to almost tell jokes is powerful. How wonderful that he is beginning to express himself that way. I understand the low volume and tone thing too. And motor function, especially of my legs is usually the first casuality of too much brain work.... well of all sorts. One thing verbal thing I can do pretty easily is to sing. Hmmm.. not that I have a great singing voice, more that songs I love give me great pleasure and singing those often happens without me thinking about it and is uplifting. Guess I sing songs that chime with some part of me, so singing them is self expression and affirming?? Anyway, so pleased sharing my experiences maybe triggered a few thoughts for you and Mandi, it's a pleasure. Jacqui > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > As for what being non-verbal feels like, I'd guess it's different > > for > > > > me as an adult who lost many verbal and processing skills as an > > adult > > > > than for a child who lost them as a toddler. Besides which I > > have > > > > language skills, and a something like a heiracrchy of difficulty > > with > > > > typing being the easiest and face to face conversation with > > people I > > > > have strong emotions for being the toughest (other than with my > > > > husband, haven't had face to face contact with friends or family > > for > > > > more than 2 years). > > > > > > > > Anyway, in my situation the strongest feelings are sadness for > > the > > > > loss, separateness, isolation. Most powerfully a profound sense > > that > > > > I am unable to express or to be the person I am, so sometimes > > > > frustration at being grossly misrepresented and not able to set > > that > > > > straight. Guess I should've said that trying to understand and > > > > communicate verbally frequently causes me acute brain pain, very > > > > occasionally it seems like brain damage, and it's that not > > mechanical > > > > issues which most limit me. > > > > > > > > Likely Sam's situation is very different, but shout if you'd like > > > > more. > > > > > > > > Jacqui > > > > > > > > > > > > > Need to watch the surrogate tapping ones next so I can do > > something > > > > for Sam > > > > > but mega busy and need time to concentrate on that one. I did > > tap > > > > Sam after I > > > > > replied to you the other day but I am not sure I can wrap my > > head > > > > around > > > > > feeling whats its like to be non verbal, he thought I was mad > > > > doing it but was > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com) > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2008 Report Share Posted September 25, 2008 And I imagine that speech and conversation require very different brain connections too. Tom sings and sings and sings. He talks all day too but mainly big chunks of video scripts. His conversation is at a baby, almost pre-speech level. Sara x Eva family wrote: > > I think singing comes from a different part of the brain from speech. > Also it's not expected to make sense ie cause effects > Sally > > fideaueater wrote: > > > > Steph, if i were your child everything you're doing re verbal > > communication sounds great- very supportive, helpful and > > encouraging. The picture you gave me in the previous post of Tom > > now being able to almost tell jokes is powerful. How wonderful that > > he is beginning to express himself that way. > > > > I understand the low volume and tone thing too. And motor function, > > especially of my legs is usually the first casuality of too much > > brain work.... well of all sorts. > > > > One thing verbal thing I can do pretty easily is to sing. Hmmm.. not > > that I have a great singing voice, more that songs I love give me > > great pleasure and singing those often happens without me thinking > > about it and is uplifting. Guess I sing songs that chime with some > > part of me, so singing them is self expression and affirming?? > > > > Anyway, so pleased sharing my experiences maybe triggered a few > > thoughts for you and Mandi, it's a pleasure. > > > > Jacqui > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess it's > > different > > > > for > > > > > > me as an adult who lost many verbal and processing skills as > > an > > > > adult > > > > > > than for a child who lost them as a toddler. Besides which I > > > > have > > > > > > language skills, and a something like a heiracrchy of > > difficulty > > > > with > > > > > > typing being the easiest and face to face conversation with > > > > people I > > > > > > have strong emotions for being the toughest (other than with > > my > > > > > > husband, haven't had face to face contact with friends or > > family > > > > for > > > > > > more than 2 years). > > > > > > > > > > > > Anyway, in my situation the strongest feelings are sadness > > for > > > > the > > > > > > loss, separateness, isolation. Most powerfully a profound > > sense > > > > that > > > > > > I am unable to express or to be the person I am, so sometimes > > > > > > frustration at being grossly misrepresented and not able to > > set > > > > that > > > > > > straight. Guess I should've said that trying to understand > > and > > > > > > communicate verbally frequently causes me acute brain pain, > > very > > > > > > occasionally it seems like brain damage, and it's that not > > > > mechanical > > > > > > issues which most limit me. > > > > > > > > > > > > Likely Sam's situation is very different, but shout if you'd > > like > > > > > > more. > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next so I can do > > > > something > > > > > > for Sam > > > > > > > but mega busy and need time to concentrate on that one. I > > did > > > > tap > > > > > > Sam after I > > > > > > > replied to you the other day but I am not sure I can wrap > > my > > > > head > > > > > > around > > > > > > > feeling whats its like to be non verbal, he thought I was > > mad > > > > > > doing it but was > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>>) > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release Date: > 24/09/2008 18:51 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2008 Report Share Posted September 25, 2008 That's just like Edith. Does he sing in tune? Edith has a lovely voice and turned out to enjoy playing music \(and listening to it which is now one of her favourite self-occupying things to do) Sally Sara Moroza- wrote: > > And I imagine that speech and conversation require very different brain > connections too. Tom sings and sings and sings. He talks all day too but > mainly big chunks of video scripts. His conversation is at a baby, > almost pre-speech level. > Sara x > > Eva family wrote: > > > > I think singing comes from a different part of the brain from speech. > > Also it's not expected to make sense ie cause effects > > Sally > > > > fideaueater wrote: > > > > > > Steph, if i were your child everything you're doing re verbal > > > communication sounds great- very supportive, helpful and > > > encouraging. The picture you gave me in the previous post of Tom > > > now being able to almost tell jokes is powerful. How wonderful that > > > he is beginning to express himself that way. > > > > > > I understand the low volume and tone thing too. And motor function, > > > especially of my legs is usually the first casuality of too much > > > brain work.... well of all sorts. > > > > > > One thing verbal thing I can do pretty easily is to sing. Hmmm.. not > > > that I have a great singing voice, more that songs I love give me > > > great pleasure and singing those often happens without me thinking > > > about it and is uplifting. Guess I sing songs that chime with some > > > part of me, so singing them is self expression and affirming?? > > > > > > Anyway, so pleased sharing my experiences maybe triggered a few > > > thoughts for you and Mandi, it's a pleasure. > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess it's > > > different > > > > > for > > > > > > > me as an adult who lost many verbal and processing skills as > > > an > > > > > adult > > > > > > > than for a child who lost them as a toddler. Besides which I > > > > > have > > > > > > > language skills, and a something like a heiracrchy of > > > difficulty > > > > > with > > > > > > > typing being the easiest and face to face conversation with > > > > > people I > > > > > > > have strong emotions for being the toughest (other than with > > > my > > > > > > > husband, haven't had face to face contact with friends or > > > family > > > > > for > > > > > > > more than 2 years). > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings are sadness > > > for > > > > > the > > > > > > > loss, separateness, isolation. Most powerfully a profound > > > sense > > > > > that > > > > > > > I am unable to express or to be the person I am, so sometimes > > > > > > > frustration at being grossly misrepresented and not able to > > > set > > > > > that > > > > > > > straight. Guess I should've said that trying to understand > > > and > > > > > > > communicate verbally frequently causes me acute brain pain, > > > very > > > > > > > occasionally it seems like brain damage, and it's that not > > > > > mechanical > > > > > > > issues which most limit me. > > > > > > > > > > > > > > Likely Sam's situation is very different, but shout if you'd > > > like > > > > > > > more. > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next so I can do > > > > > something > > > > > > > for Sam > > > > > > > > but mega busy and need time to concentrate on that one. I > > > did > > > > > tap > > > > > > > Sam after I > > > > > > > > replied to you the other day but I am not sure I can wrap > > > my > > > > > head > > > > > > > around > > > > > > > > feeling whats its like to be non verbal, he thought I was > > > mad > > > > > > > doing it but was > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>) > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release Date: > > 24/09/2008 18:51 > > > > > > > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release Date: 25/09/2008 07:05 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2008 Report Share Posted September 25, 2008 yes, he does. I'll buy him a piano one of these days. Sara x Eva family wrote: > > That's just like Edith. Does he sing in tune? Edith has a lovely voice > and turned out to enjoy playing music \(and listening to it which is now > one of her favourite self-occupying things to do) > Sally > > Sara Moroza- wrote: > > > > And I imagine that speech and conversation require very different brain > > connections too. Tom sings and sings and sings. He talks all day too but > > mainly big chunks of video scripts. His conversation is at a baby, > > almost pre-speech level. > > Sara x > > > > Eva family wrote: > > > > > > I think singing comes from a different part of the brain from speech. > > > Also it's not expected to make sense ie cause effects > > > Sally > > > > > > fideaueater wrote: > > > > > > > > Steph, if i were your child everything you're doing re verbal > > > > communication sounds great- very supportive, helpful and > > > > encouraging. The picture you gave me in the previous post of Tom > > > > now being able to almost tell jokes is powerful. How wonderful that > > > > he is beginning to express himself that way. > > > > > > > > I understand the low volume and tone thing too. And motor function, > > > > especially of my legs is usually the first casuality of too much > > > > brain work.... well of all sorts. > > > > > > > > One thing verbal thing I can do pretty easily is to sing. Hmmm.. not > > > > that I have a great singing voice, more that songs I love give me > > > > great pleasure and singing those often happens without me thinking > > > > about it and is uplifting. Guess I sing songs that chime with some > > > > part of me, so singing them is self expression and affirming?? > > > > > > > > Anyway, so pleased sharing my experiences maybe triggered a few > > > > thoughts for you and Mandi, it's a pleasure. > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess it's > > > > different > > > > > > for > > > > > > > > me as an adult who lost many verbal and processing skills as > > > > an > > > > > > adult > > > > > > > > than for a child who lost them as a toddler. Besides which I > > > > > > have > > > > > > > > language skills, and a something like a heiracrchy of > > > > difficulty > > > > > > with > > > > > > > > typing being the easiest and face to face conversation with > > > > > > people I > > > > > > > > have strong emotions for being the toughest (other than with > > > > my > > > > > > > > husband, haven't had face to face contact with friends or > > > > family > > > > > > for > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings are sadness > > > > for > > > > > > the > > > > > > > > loss, separateness, isolation. Most powerfully a profound > > > > sense > > > > > > that > > > > > > > > I am unable to express or to be the person I am, so > sometimes > > > > > > > > frustration at being grossly misrepresented and not able to > > > > set > > > > > > that > > > > > > > > straight. Guess I should've said that trying to understand > > > > and > > > > > > > > communicate verbally frequently causes me acute brain pain, > > > > very > > > > > > > > occasionally it seems like brain damage, and it's that not > > > > > > mechanical > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but shout if you'd > > > > like > > > > > > > > more. > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next so I can do > > > > > > something > > > > > > > > for Sam > > > > > > > > > but mega busy and need time to concentrate on that one. I > > > > did > > > > > > tap > > > > > > > > Sam after I > > > > > > > > > replied to you the other day but I am not sure I can wrap > > > > my > > > > > > head > > > > > > > > around > > > > > > > > > feeling whats its like to be non verbal, he thought I was > > > > mad > > > > > > > > doing it but was > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>>) > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>>> > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release Date: > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release Date: > 25/09/2008 07:05 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 -Katy is a like this ,she enjoys singing and her favourite pass time is listening to CD's and trying to dance on her High School Musical dance mat.She is learning to play the guitar,we are having to colour code the music for her but her concentration when playing is very impressive. Sharon. -- In Autism-Biomedical-Europe , Eva family wrote: > > That's just like Edith. Does he sing in tune? Edith has a lovely voice > and turned out to enjoy playing music \(and listening to it which is now > one of her favourite self-occupying things to do) > Sally > > Sara Moroza- wrote: > > > > And I imagine that speech and conversation require very different brain > > connections too. Tom sings and sings and sings. He talks all day too but > > mainly big chunks of video scripts. His conversation is at a baby, > > almost pre-speech level. > > Sara x > > > > Eva family wrote: > > > > > > I think singing comes from a different part of the brain from speech. > > > Also it's not expected to make sense ie cause effects > > > Sally > > > > > > fideaueater wrote: > > > > > > > > Steph, if i were your child everything you're doing re verbal > > > > communication sounds great- very supportive, helpful and > > > > encouraging. The picture you gave me in the previous post of Tom > > > > now being able to almost tell jokes is powerful. How wonderful that > > > > he is beginning to express himself that way. > > > > > > > > I understand the low volume and tone thing too. And motor function, > > > > especially of my legs is usually the first casuality of too much > > > > brain work.... well of all sorts. > > > > > > > > One thing verbal thing I can do pretty easily is to sing. Hmmm.. not > > > > that I have a great singing voice, more that songs I love give me > > > > great pleasure and singing those often happens without me thinking > > > > about it and is uplifting. Guess I sing songs that chime with some > > > > part of me, so singing them is self expression and affirming?? > > > > > > > > Anyway, so pleased sharing my experiences maybe triggered a few > > > > thoughts for you and Mandi, it's a pleasure. > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess it's > > > > different > > > > > > for > > > > > > > > me as an adult who lost many verbal and processing skills as > > > > an > > > > > > adult > > > > > > > > than for a child who lost them as a toddler. Besides which I > > > > > > have > > > > > > > > language skills, and a something like a heiracrchy of > > > > difficulty > > > > > > with > > > > > > > > typing being the easiest and face to face conversation with > > > > > > people I > > > > > > > > have strong emotions for being the toughest (other than with > > > > my > > > > > > > > husband, haven't had face to face contact with friends or > > > > family > > > > > > for > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings are sadness > > > > for > > > > > > the > > > > > > > > loss, separateness, isolation. Most powerfully a profound > > > > sense > > > > > > that > > > > > > > > I am unable to express or to be the person I am, so sometimes > > > > > > > > frustration at being grossly misrepresented and not able to > > > > set > > > > > > that > > > > > > > > straight. Guess I should've said that trying to understand > > > > and > > > > > > > > communicate verbally frequently causes me acute brain pain, > > > > very > > > > > > > > occasionally it seems like brain damage, and it's that not > > > > > > mechanical > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but shout if you'd > > > > like > > > > > > > > more. > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next so I can do > > > > > > something > > > > > > > > for Sam > > > > > > > > > but mega busy and need time to concentrate on that one. I > > > > did > > > > > > tap > > > > > > > > Sam after I > > > > > > > > > replied to you the other day but I am not sure I can wrap > > > > my > > > > > > head > > > > > > > > around > > > > > > > > > feeling whats its like to be non verbal, he thought I was > > > > mad > > > > > > > > doing it but was > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > > <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>> > > > > <http://www.emofree.com <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>>>) > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > <http://www.avg.com <http://www.avg.com>> > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release Date: > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > ------------------------------------------------------------------ ------ > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release Date: 25/09/2008 07:05 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 You know the " Man who Mistook his Wife for a hat " series of brain-damage oddities. I think that there is something like that with music and words -- that they come from different parts of the brain. Edith's recorder teacher says " music is her language " and claims to communicate with her musically. Words are certainly NOT her language. There is a certain amount on the Web about perfect pitch and savant skills associated with autism. Edith is no savant but she is interested in music in a way that she is not interested in words. Maybe because you don't do anything with music except play with it. That is also how she treats words Sally Sharon wrote: > > -Katy is a like this ,she enjoys singing and her favourite pass time > is listening to CD's and trying to dance on her High School Musical > dance mat.She is learning to play the guitar,we are having to colour > code the music for her but her concentration when playing is very > impressive. > > Sharon. > > -- In Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>, Eva family > wrote: > > > > That's just like Edith. Does he sing in tune? Edith has a lovely > voice > > and turned out to enjoy playing music \(and listening to it which > is now > > one of her favourite self-occupying things to do) > > Sally > > > > Sara Moroza- wrote: > > > > > > And I imagine that speech and conversation require very different > brain > > > connections too. Tom sings and sings and sings. He talks all day > too but > > > mainly big chunks of video scripts. His conversation is at a baby, > > > almost pre-speech level. > > > Sara x > > > > > > Eva family wrote: > > > > > > > > I think singing comes from a different part of the brain from > speech. > > > > Also it's not expected to make sense ie cause effects > > > > Sally > > > > > > > > fideaueater wrote: > > > > > > > > > > Steph, if i were your child everything you're doing re verbal > > > > > communication sounds great- very supportive, helpful and > > > > > encouraging. The picture you gave me in the previous post of > Tom > > > > > now being able to almost tell jokes is powerful. How > wonderful that > > > > > he is beginning to express himself that way. > > > > > > > > > > I understand the low volume and tone thing too. And motor > function, > > > > > especially of my legs is usually the first casuality of too > much > > > > > brain work.... well of all sorts. > > > > > > > > > > One thing verbal thing I can do pretty easily is to sing. > Hmmm.. not > > > > > that I have a great singing voice, more that songs I love > give me > > > > > great pleasure and singing those often happens without me > thinking > > > > > about it and is uplifting. Guess I sing songs that chime with > some > > > > > part of me, so singing them is self expression and affirming?? > > > > > > > > > > Anyway, so pleased sharing my experiences maybe triggered a > few > > > > > thoughts for you and Mandi, it's a pleasure. > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess > it's > > > > > different > > > > > > > for > > > > > > > > > me as an adult who lost many verbal and processing > skills as > > > > > an > > > > > > > adult > > > > > > > > > than for a child who lost them as a toddler. Besides > which I > > > > > > > have > > > > > > > > > language skills, and a something like a heiracrchy of > > > > > difficulty > > > > > > > with > > > > > > > > > typing being the easiest and face to face > conversation with > > > > > > > people I > > > > > > > > > have strong emotions for being the toughest (other > than with > > > > > my > > > > > > > > > husband, haven't had face to face contact with > friends or > > > > > family > > > > > > > for > > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings are > sadness > > > > > for > > > > > > > the > > > > > > > > > loss, separateness, isolation. Most powerfully a > profound > > > > > sense > > > > > > > that > > > > > > > > > I am unable to express or to be the person I am, so > sometimes > > > > > > > > > frustration at being grossly misrepresented and not > able to > > > > > set > > > > > > > that > > > > > > > > > straight. Guess I should've said that trying to > understand > > > > > and > > > > > > > > > communicate verbally frequently causes me acute brain > pain, > > > > > very > > > > > > > > > occasionally it seems like brain damage, and it's > that not > > > > > > > mechanical > > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but shout > if you'd > > > > > like > > > > > > > > > more. > > > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next so I > can do > > > > > > > something > > > > > > > > > for Sam > > > > > > > > > > but mega busy and need time to concentrate on that > one. I > > > > > did > > > > > > > tap > > > > > > > > > Sam after I > > > > > > > > > > replied to you the other day but I am not sure I > can wrap > > > > > my > > > > > > > head > > > > > > > > > around > > > > > > > > > > feeling whats its like to be non verbal, he thought > I was > > > > > mad > > > > > > > > > doing it but was > > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>> > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>>) > > > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>>> > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release > Date: > > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > ------ > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release Date: > 25/09/2008 07:05 > > > > > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release Date: 25/09/2008 19:23 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Langauge and using it is definitely most difficult for Katy (mine aswell i feel).She has good motor skills ,learnt to ride a bike early,rollerblading for miles with her Dad,she was the best in her class at ice skating,only took her a few minutes to be cruising along watching and copying more advanced skaters.She is a pleasure to watch at this ! She takes in so much from watching and copying. Fine motor skills are also quite good. Also she shows she is bright in the way she is so very sneaky ay getting food she is not allowed,she runs rings around most people. Sharon. Sharon > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess > > it's > > > > > > different > > > > > > > > for > > > > > > > > > > me as an adult who lost many verbal and processing > > skills as > > > > > > an > > > > > > > > adult > > > > > > > > > > than for a child who lost them as a toddler. Besides > > which I > > > > > > > > have > > > > > > > > > > language skills, and a something like a heiracrchy of > > > > > > difficulty > > > > > > > > with > > > > > > > > > > typing being the easiest and face to face > > conversation with > > > > > > > > people I > > > > > > > > > > have strong emotions for being the toughest (other > > than with > > > > > > my > > > > > > > > > > husband, haven't had face to face contact with > > friends or > > > > > > family > > > > > > > > for > > > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings are > > sadness > > > > > > for > > > > > > > > the > > > > > > > > > > loss, separateness, isolation. Most powerfully a > > profound > > > > > > sense > > > > > > > > that > > > > > > > > > > I am unable to express or to be the person I am, so > > sometimes > > > > > > > > > > frustration at being grossly misrepresented and not > > able to > > > > > > set > > > > > > > > that > > > > > > > > > > straight. Guess I should've said that trying to > > understand > > > > > > and > > > > > > > > > > communicate verbally frequently causes me acute brain > > pain, > > > > > > very > > > > > > > > > > occasionally it seems like brain damage, and it's > > that not > > > > > > > > mechanical > > > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but shout > > if you'd > > > > > > like > > > > > > > > > > more. > > > > > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next so I > > can do > > > > > > > > something > > > > > > > > > > for Sam > > > > > > > > > > > but mega busy and need time to concentrate on that > > one. I > > > > > > did > > > > > > > > tap > > > > > > > > > > Sam after I > > > > > > > > > > > replied to you the other day but I am not sure I > > can wrap > > > > > > my > > > > > > > > head > > > > > > > > > > around > > > > > > > > > > > feeling whats its like to be non verbal, he thought > > I was > > > > > > mad > > > > > > > > > > doing it but was > > > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > > <http://www.emofree.com> > > > > <http://www.emofree.com <http://www.emofree.com>> > > > > > <http://www.emofree.com <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>>> > > > > > > <http://www.emofree.com <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>> > > > > <http://www.emofree.com <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>>>>) > > > > > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > <http://www.avg.com <http://www.avg.com>> > > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > > <http://www.avg.com>>> > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release > > Date: > > > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > ------ > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release Date: > > 25/09/2008 07:05 > > > > > > > > > > > > > > > > > ------------------------------------------------------------------ ------ > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release Date: 25/09/2008 19:23 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 There is no brain damage in autism. If there is brain damage in some children then that means an additional diagnosis. The brain connections are lacking so the different parts of the brain work but not in unison. A great amount of connectivity is required for conversation. This is real RDI stuff. Sara > > > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess > > > it's > > > > > > > different > > > > > > > > > for > > > > > > > > > > > me as an adult who lost many verbal and processing > > > skills as > > > > > > > an > > > > > > > > > adult > > > > > > > > > > > than for a child who lost them as a toddler. > Besides > > > which I > > > > > > > > > have > > > > > > > > > > > language skills, and a something like a > heiracrchy of > > > > > > > difficulty > > > > > > > > > with > > > > > > > > > > > typing being the easiest and face to face > > > conversation with > > > > > > > > > people I > > > > > > > > > > > have strong emotions for being the toughest (other > > > than with > > > > > > > my > > > > > > > > > > > husband, haven't had face to face contact with > > > friends or > > > > > > > family > > > > > > > > > for > > > > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings are > > > sadness > > > > > > > for > > > > > > > > > the > > > > > > > > > > > loss, separateness, isolation. Most powerfully a > > > profound > > > > > > > sense > > > > > > > > > that > > > > > > > > > > > I am unable to express or to be the person I am, > so > > > sometimes > > > > > > > > > > > frustration at being grossly misrepresented and > not > > > able to > > > > > > > set > > > > > > > > > that > > > > > > > > > > > straight. Guess I should've said that trying to > > > understand > > > > > > > and > > > > > > > > > > > communicate verbally frequently causes me acute > brain > > > pain, > > > > > > > very > > > > > > > > > > > occasionally it seems like brain damage, and it's > > > that not > > > > > > > > > mechanical > > > > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but > shout > > > if you'd > > > > > > > like > > > > > > > > > > > more. > > > > > > > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next > so I > > > can do > > > > > > > > > something > > > > > > > > > > > for Sam > > > > > > > > > > > > but mega busy and need time to concentrate on > that > > > one. I > > > > > > > did > > > > > > > > > tap > > > > > > > > > > > Sam after I > > > > > > > > > > > > replied to you the other day but I am not sure I > > > can wrap > > > > > > > my > > > > > > > > > head > > > > > > > > > > > around > > > > > > > > > > > > feeling whats its like to be non verbal, he > thought > > > I was > > > > > > > mad > > > > > > > > > > > doing it but was > > > > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > > > <http://www.emofree.com> > > > > > <http://www.emofree.com <http://www.emofree.com>> > > > > > > <http://www.emofree.com <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>>> > > > > > > > <http://www.emofree.com <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>> > > > > > <http://www.emofree.com <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>>>>) > > > > > > > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -------------------------------------------------------- -- > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > <http://www.avg.com <http://www.avg.com>> > > > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > > > <http://www.avg.com>>> > > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release > > > Date: > > > > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > ------ > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release > Date: > > > 25/09/2008 07:05 > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------------- -- > ------ > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - http://www.avg.com > > > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release Date: > 25/09/2008 19:23 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Yes, that's very like Edith -- trampolining was a big hit -- you've probably tried that too? Edith's quite good at basic emotions -- happy, cross etc. -- body language, " atmospheres " . She talks but 99% nonsense xx Sally Sharon wrote: > > Langauge and using it is definitely most difficult for Katy (mine > aswell i feel).She has good motor skills ,learnt to ride a bike > early,rollerblading for miles with her Dad,she was the best in her > class at ice skating,only took her a few minutes to be cruising along > watching and copying more advanced skaters.She is a pleasure to watch > at this ! > She takes in so much from watching and copying. > Fine motor skills are also quite good. > Also she shows she is bright in the way she is so very sneaky ay > getting food she is not allowed,she runs rings around most people. > > Sharon. > > Sharon > > > > > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess > > > it's > > > > > > > different > > > > > > > > > for > > > > > > > > > > > me as an adult who lost many verbal and processing > > > skills as > > > > > > > an > > > > > > > > > adult > > > > > > > > > > > than for a child who lost them as a toddler. > Besides > > > which I > > > > > > > > > have > > > > > > > > > > > language skills, and a something like a > heiracrchy of > > > > > > > difficulty > > > > > > > > > with > > > > > > > > > > > typing being the easiest and face to face > > > conversation with > > > > > > > > > people I > > > > > > > > > > > have strong emotions for being the toughest (other > > > than with > > > > > > > my > > > > > > > > > > > husband, haven't had face to face contact with > > > friends or > > > > > > > family > > > > > > > > > for > > > > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings are > > > sadness > > > > > > > for > > > > > > > > > the > > > > > > > > > > > loss, separateness, isolation. Most powerfully a > > > profound > > > > > > > sense > > > > > > > > > that > > > > > > > > > > > I am unable to express or to be the person I am, > so > > > sometimes > > > > > > > > > > > frustration at being grossly misrepresented and > not > > > able to > > > > > > > set > > > > > > > > > that > > > > > > > > > > > straight. Guess I should've said that trying to > > > understand > > > > > > > and > > > > > > > > > > > communicate verbally frequently causes me acute > brain > > > pain, > > > > > > > very > > > > > > > > > > > occasionally it seems like brain damage, and it's > > > that not > > > > > > > > > mechanical > > > > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but > shout > > > if you'd > > > > > > > like > > > > > > > > > > > more. > > > > > > > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next > so I > > > can do > > > > > > > > > something > > > > > > > > > > > for Sam > > > > > > > > > > > > but mega busy and need time to concentrate on > that > > > one. I > > > > > > > did > > > > > > > > > tap > > > > > > > > > > > Sam after I > > > > > > > > > > > > replied to you the other day but I am not sure I > > > can wrap > > > > > > > my > > > > > > > > > head > > > > > > > > > > > around > > > > > > > > > > > > feeling whats its like to be non verbal, he > thought > > > I was > > > > > > > mad > > > > > > > > > > > doing it but was > > > > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>> > > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>>>) > > > > > > > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>>> > > > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>> <http://www.avg.com <http://www.avg.com> > > > <http://www.avg.com <http://www.avg.com>>>> > > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release > > > Date: > > > > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > ------ > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release > Date: > > > 25/09/2008 07:05 > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > ------ > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release Date: > 25/09/2008 19:23 > > > > > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release Date: 25/09/2008 19:23 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Hi there butting in here but I find this and other things all so amazing really. (8yrs) is non verbal but 'sings' constantly, even in his sleep. My pianist husband says he has perfect pitch. He really does sound like a little choir boy at times. He finds it v comforting I think. Helen x > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess it's > > > > > different > > > > > > > for > > > > > > > > > me as an adult who lost many verbal and processing skills as > > > > > an > > > > > > > adult > > > > > > > > > than for a child who lost them as a toddler. Besides which I > > > > > > > have > > > > > > > > > language skills, and a something like a heiracrchy of > > > > > difficulty > > > > > > > with > > > > > > > > > typing being the easiest and face to face conversation with > > > > > > > people I > > > > > > > > > have strong emotions for being the toughest (other than with > > > > > my > > > > > > > > > husband, haven't had face to face contact with friends or > > > > > family > > > > > > > for > > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings are sadness > > > > > for > > > > > > > the > > > > > > > > > loss, separateness, isolation. Most powerfully a profound > > > > > sense > > > > > > > that > > > > > > > > > I am unable to express or to be the person I am, so > > sometimes > > > > > > > > > frustration at being grossly misrepresented and not able to > > > > > set > > > > > > > that > > > > > > > > > straight. Guess I should've said that trying to understand > > > > > and > > > > > > > > > communicate verbally frequently causes me acute brain pain, > > > > > very > > > > > > > > > occasionally it seems like brain damage, and it's that not > > > > > > > mechanical > > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but shout if you'd > > > > > like > > > > > > > > > more. > > > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next so I can do > > > > > > > something > > > > > > > > > for Sam > > > > > > > > > > but mega busy and need time to concentrate on that one. I > > > > > did > > > > > > > tap > > > > > > > > > Sam after I > > > > > > > > > > replied to you the other day but I am not sure I can wrap > > > > > my > > > > > > > head > > > > > > > > > around > > > > > > > > > > feeling whats its like to be non verbal, he thought I was > > > > > mad > > > > > > > > > doing it but was > > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > > <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>> > > > > <http://www.emofree.com <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>>> > > > > > <http://www.emofree.com <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > > <http://www.emofree.com <http://www.emofree.com>>>>) > > > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > <http://www.avg.com <http://www.avg.com>> > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > > <http://www.avg.com>>> > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release Date: > > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release Date: > > 25/09/2008 07:05 > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 is 11 now, and we are getting concerned we may never hear him speak. Biomed gosh don't know how long, but around the same time as Mandi did with Sam. Biomed has helped loads with his general health which was absolutely dire, his behaviours, loads of stuff really, his receptive language is excellent, he never understood tiddly squat in the early years, in many ways he is a lot higher functioning than he used to be, but language is just completely stuck. Without a shadow of doubt the least improved area of his life, by some margin. I'm convinced it's in there, but am becoming more convinced the speech therapy has been woefully inadequate. It's like we have healed him to the point of total understanding but now need the correct therapy to move on. Anyone know anything about PROMPT or oromotor? Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Edith used to sing as she now talks -- a stream of consciousness where one bit of tune would remind her of another and she would switch in mid line to another song and then switch again, and again. Sally helenco68 wrote: > > Hi Sally > > Chime bars!! What a great idea. Hadn't thought of that. He has > endless musical toys and books which he adores. He has music therapy > which is v 'sonrisy' where you follow the lead of the child all the > time looking for positive interaction. He's great at repeating drum > rhythms. He tootles about on the piano at home but we can't keep him > still enough for long enough to engage more than a few seconds at a > time. Its like someone else said, its almost as if words are > unimportant to him as he has such a huge repertoire of notes in his > head which to him mean everything. > > Helen xx > > Hi > > > > > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd > guess > > > it's > > > > > > > > different > > > > > > > > > > for > > > > > > > > > > > > me as an adult who lost many verbal and > processing > > > skills as > > > > > > > > an > > > > > > > > > > adult > > > > > > > > > > > > than for a child who lost them as a toddler. > > > Besides which I > > > > > > > > > > have > > > > > > > > > > > > language skills, and a something like a > heiracrchy > > > of > > > > > > > > difficulty > > > > > > > > > > with > > > > > > > > > > > > typing being the easiest and face to face > > > conversation with > > > > > > > > > > people I > > > > > > > > > > > > have strong emotions for being the toughest > (other > > > than with > > > > > > > > my > > > > > > > > > > > > husband, haven't had face to face contact with > > > friends or > > > > > > > > family > > > > > > > > > > for > > > > > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings > are > > > sadness > > > > > > > > for > > > > > > > > > > the > > > > > > > > > > > > loss, separateness, isolation. Most powerfully a > > > profound > > > > > > > > sense > > > > > > > > > > that > > > > > > > > > > > > I am unable to express or to be the person I > am, so > > > > > sometimes > > > > > > > > > > > > frustration at being grossly misrepresented and > not > > > able to > > > > > > > > set > > > > > > > > > > that > > > > > > > > > > > > straight. Guess I should've said that trying to > > > understand > > > > > > > > and > > > > > > > > > > > > communicate verbally frequently causes me acute > > > brain pain, > > > > > > > > very > > > > > > > > > > > > occasionally it seems like brain damage, and > it's > > > that not > > > > > > > > > > mechanical > > > > > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but > shout > > > if you'd > > > > > > > > like > > > > > > > > > > > > more. > > > > > > > > > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next > so > > > I can do > > > > > > > > > > something > > > > > > > > > > > > for Sam > > > > > > > > > > > > > but mega busy and need time to concentrate on > > > that one. I > > > > > > > > did > > > > > > > > > > tap > > > > > > > > > > > > Sam after I > > > > > > > > > > > > > replied to you the other day but I am not > sure I > > > can wrap > > > > > > > > my > > > > > > > > > > head > > > > > > > > > > > > around > > > > > > > > > > > > > feeling whats its like to be non verbal, he > > > thought I was > > > > > > > > mad > > > > > > > > > > > > doing it but was > > > > > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>> > > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>>> > > > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>> > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>>>>) > > > > > > > > > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -------------------------------------------------------- > -- > > > > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>>> > > > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>> <http://www.avg.com <http://www.avg.com> > > > <http://www.avg.com <http://www.avg.com>>>> > > > > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>> > <http://www.avg.com <http://www.avg.com> > > > <http://www.avg.com <http://www.avg.com>>> <http://www.avg.com > <http://www.avg.com> <http://www.avg.com <http://www.avg.com>> > > > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>>>>> > > > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - > Release > > > Date: > > > > > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>>> > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release > Date: > > > > > 25/09/2008 07:05 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > ------ > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release Date: > 25/09/2008 19:23 > > > > > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release Date: 25/09/2008 19:23 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 I think it's only in last last 3 or 4 years Katy has enjoyed music ( She's now 12yrs old ) She was non verbal up to the age of about 6 yrs ,then started making some sounds.When she was younger she couldn't tolerate any music on,I would have to turn everything off if she was home,even the television. At about 9 yrs she had a whistle stimm,which was pitch perfect.I can't say when things really changed,but she has been in the school choir for a couple of years,sometimes she joins in,other times she just moves to the music with a huge smile on her face. Sharon. > > my son (Nico) is non-verbal, he doesn't sing at all. The only thing is that he repeats words from time to time like bye-bye or ball or video (but it is just repeating after us). > Begona > > > > Re: Re: Mandi: EFT/ nonverbal > > > I'm following this thread with interest, wonder though how many on here have completely non verbal kids, not even singing. > I think Mandi is one, and . Any others? > > Any others? > Vicky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Thanks Zoe, it's not that I don't want to do RDI or anything else really, but we can only run to so much financially. I have trawled the internet to see if there is anything we could do by ourselves at home, but very little is being advised for free. When was dx at less than 2yrs old we had to make choices of biomedical interventions such as they were back then or ABA. was sick so biomedical it was, and in anycase he couldn't have absorbed anything back then with his health as it was. He has been well physically for some time now but finances are worse than ever so all he gets is what I can come up with myself. Ultimately we have to make a decision to risk all in the hope that he can significantly improve with therapy or hold tight and make decisions regarding his future further down the line. It may sound kind of mercenary but I never forget all the advice 2 years ago regarding tribunal, solicitors etc, only way to go, etc and we ended up 20k plus out of pocket and lost. So my heart says put everything on the line for whatever therapy may make a difference and my head says both kids could end up losing the roof over their heads with no security for their future and not significantly improved in their functioning. Course in an ideal world all this would be available as standard for our kids given the amount of kids who have made significant gains, how many have flourished with TEAACH and Risperidone but that is what we are expected to put our faith in, sigh. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 I had a quiet row with a horrible social worker while Edith was in the room. Edith climbed onto my lap and lay sideways like a baby and cried. (She's 16 and bigger than me). I think she was stressed by the (very bad) atmosphere xx Sally Sharon wrote: > > -Yes same with Katy.Loves trampolining. > > She is very intuitive if anyone is upset,runs straight over to upset > family members to give them a huge,saying All better, and a kiss. > (sorry my speech mark and pound sign keys don't work ).Then she tries > to make your mouth smile and say's be happy.Also becomes stressed if > people are annoyed with her or others around her. > > Sharon.x > > -- In Autism-Biomedical-Europe > <mailto:Autism-Biomedical-Europe%40yahoogroups.com>, Eva family > wrote: > > > > Yes, that's very like Edith -- trampolining was a big hit -- you've > > probably tried that too? > > > > Edith's quite good at basic emotions -- happy, cross etc. -- body > > language, " atmospheres " . > > > > She talks but 99% nonsense > > > > xx Sally > > > > Sharon wrote: > > > > > > Langauge and using it is definitely most difficult for Katy (mine > > > aswell i feel).She has good motor skills ,learnt to ride a bike > > > early,rollerblading for miles with her Dad,she was the best in her > > > class at ice skating,only took her a few minutes to be cruising > along > > > watching and copying more advanced skaters.She is a pleasure to > watch > > > at this ! > > > She takes in so much from watching and copying. > > > Fine motor skills are also quite good. > > > Also she shows she is bright in the way she is so very sneaky ay > > > getting food she is not allowed,she runs rings around most people. > > > > > > Sharon. > > > > > > Sharon > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd > guess > > > > > it's > > > > > > > > > different > > > > > > > > > > > for > > > > > > > > > > > > > me as an adult who lost many verbal and > processing > > > > > skills as > > > > > > > > > an > > > > > > > > > > > adult > > > > > > > > > > > > > than for a child who lost them as a toddler. > > > Besides > > > > > which I > > > > > > > > > > > have > > > > > > > > > > > > > language skills, and a something like a > > > heiracrchy of > > > > > > > > > difficulty > > > > > > > > > > > with > > > > > > > > > > > > > typing being the easiest and face to face > > > > > conversation with > > > > > > > > > > > people I > > > > > > > > > > > > > have strong emotions for being the toughest > (other > > > > > than with > > > > > > > > > my > > > > > > > > > > > > > husband, haven't had face to face contact with > > > > > friends or > > > > > > > > > family > > > > > > > > > > > for > > > > > > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > > > > > > > > > > > Anyway, in my situation the strongest > feelings are > > > > > sadness > > > > > > > > > for > > > > > > > > > > > the > > > > > > > > > > > > > loss, separateness, isolation. Most > powerfully a > > > > > profound > > > > > > > > > sense > > > > > > > > > > > that > > > > > > > > > > > > > I am unable to express or to be the person I > am, > > > so > > > > > sometimes > > > > > > > > > > > > > frustration at being grossly misrepresented > and > > > not > > > > > able to > > > > > > > > > set > > > > > > > > > > > that > > > > > > > > > > > > > straight. Guess I should've said that trying > to > > > > > understand > > > > > > > > > and > > > > > > > > > > > > > communicate verbally frequently causes me > acute > > > brain > > > > > pain, > > > > > > > > > very > > > > > > > > > > > > > occasionally it seems like brain damage, and > it's > > > > > that not > > > > > > > > > > > mechanical > > > > > > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but > > > shout > > > > > if you'd > > > > > > > > > like > > > > > > > > > > > > > more. > > > > > > > > > > > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones > next > > > so I > > > > > can do > > > > > > > > > > > something > > > > > > > > > > > > > for Sam > > > > > > > > > > > > > > but mega busy and need time to concentrate > on > > > that > > > > > one. I > > > > > > > > > did > > > > > > > > > > > tap > > > > > > > > > > > > > Sam after I > > > > > > > > > > > > > > replied to you the other day but I am not > sure I > > > > > can wrap > > > > > > > > > my > > > > > > > > > > > head > > > > > > > > > > > > > around > > > > > > > > > > > > > > feeling whats its like to be non verbal, he > > > thought > > > > > I was > > > > > > > > > mad > > > > > > > > > > > > > doing it but was > > > > > > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>> > > > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>>> > > > > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>> > > > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>> > > > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>> > > > <http://www.emofree.com <http://www.emofree.com> > <http://www.emofree.com <http://www.emofree.com>>>>>>) > > > > > > > > > > > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------------------------ > ---- > > > > > > > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>>> > > > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>> <http://www.avg.com <http://www.avg.com> > > > <http://www.avg.com <http://www.avg.com>>>> > > > > > > > <http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > <http://www.avg.com <http://www.avg.com> > > > <http://www.avg.com <http://www.avg.com>>> <http://www.avg.com > <http://www.avg.com> <http://www.avg.com <http://www.avg.com>> > > > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>>>>> > > > > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - > Release > > > > > Date: > > > > > > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > ------ > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > <http://www.avg.com>>> > > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release > > > Date: > > > > > 25/09/2008 07:05 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > ------ > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > <http://www.avg.com <http://www.avg.com>> > > > > > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release > Date: > > > 25/09/2008 19:23 > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > ------ > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release Date: > 25/09/2008 19:23 > > > > > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.169 / Virus Database: 270.7.3/1693 - Release Date: 26/09/2008 07:35 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Hi Vicky, My son is non-verbal aswel,he will say a few words like Barney,toilet,crisps..but does not actualy communicate, he does however sing songs all day long,from his dvds,even when he is crying and upset..he will cry and sing!!! but he is not able to communicate.. and he is going to be 6 in feb Subject: Re: Mandi: EFT/ nonverbalTo: Autism-Biomedical-Europe Date: Friday, 26 September, 2008, 7:28 PM I think it's only in last last 3 or 4 years Katy has enjoyed music ( She's now 12yrs old ) She was non verbal up to the age of about 6 yrs ,then started making some sounds.When she was younger she couldn't tolerate any music on,I would have to turn everything off if she was home,even the television.At about 9 yrs she had a whistle stimm,which was pitch perfect.I can't say when things really changed,but she has been in the school choir for a couple of years,sometimes she joins in,other times she just moves to the music with a huge smile on her face.Sharon.>> my son (Nico) is non-verbal, he doesn't sing at all. The only thing is that he repeats words from time to time like bye-bye or ball or video (but it is just repeating after us). > Begona> > > > Re: [Autism-Biomedical- Europe] Re: Mandi: EFT/ nonverbal> > > I'm following this thread with interest, wonder though how many on here have completely non verbal kids, not even singing.> I think Mandi is one, and . Any others?> > Any others?> Vicky> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 ---my jack,12, did this too, only relatively recently is he ok with poor singers like his mum.He too has perfect pitch . on another note,since discovering you tube ,its quite something to hear him sing disney esp jungle book songs in spanish,german ,hebrew ....... Nina In Autism-Biomedical-Europe , Eva family wrote: > > This thing about not tolerating music may be a sign of perfect pitch. > Rhona got a booklet from the States from someone who teaches savants, > discussing perfect pitch. Not allowing others to sing (because they it > so badly) was one of the signs -- Edith does this too. > Sally > > Sharon wrote: > > > > I think it's only in last last 3 or 4 years Katy has enjoyed music ( > > She's now 12yrs old ) She was non verbal up to the age of about 6 > > yrs ,then started making some sounds.When she was younger she > > couldn't tolerate any music on,I would have to turn everything off if > > she was home,even the television. > > At about 9 yrs she had a whistle stimm,which was pitch perfect.I > > can't say when things really changed,but she has been in the school > > choir for a couple of years,sometimes she joins in,other times she > > just moves to the music with a huge smile on her face. > > > > Sharon. > > > > > > > > > > my son (Nico) is non-verbal, he doesn't sing at all. The only > > thing is that he repeats words from time to time like bye-bye or > > ball or video (but it is just repeating after us). > > > Begona > > > > > > > > > > > > Re: Re: Mandi: EFT/ nonverbal > > > > > > > > > I'm following this thread with interest, wonder though how many on > > here have completely non verbal kids, not even singing. > > > I think Mandi is one, and . Any others? > > > > > > Any others? > > > Vicky > > > > > > > > > ------------------------------------------------------------------ ------ > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.169 / Virus Database: 270.7.3/1693 - Release Date: 26/09/2008 07:35 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 I thought we'd never hear Tom speak again. He didn't really get anything significant and deliberate back until July 2006. The amount of language he has on demand compared to July 2006 is probably trebled to quadrupled. It's nowhere for a 10 year old but I'm really sure he will slowly get much more. We really find that Verbal Behaviour has helped, along with treating gut and impaction in particular. Even when he was non verbal he still sang. At present he is singing The Kinks " You Really Got me " , most of the first verse and chorus (or approximations). It might be a differnt part of hte brain but it's still good practise. And it's so COOL when his VB teachers hear his great taste in music and say " wow, that sounds just like, my god it is The Kinks.. " Sx > > is 11 now, and we are getting concerned we may never hear him speak. > Biomed gosh don't know how long, but around the same time as Mandi did with > Sam. > Biomed has helped loads with his general health which was absolutely dire, > his behaviours, loads of stuff really, his receptive language is excellent, he > never understood tiddly squat in the early years, in many ways he is a lot > higher functioning than he used to be, but language is just completely stuck. > Without a shadow of doubt the least improved area of his life, by some > margin. > I'm convinced it's in there, but am becoming more convinced the speech > therapy has been woefully inadequate. It's like we have healed him to the point > of total understanding but now need the correct therapy to move on. > Anyone know anything about PROMPT or oromotor? > Vicky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 He sings in his SLEEP? that must be a first. Don't think TOm has perfect pitch but he's really accurate with notes and phrasing. His NT brother, who also sings constantly, is sadly not! S x > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd guess > it's > > > > > > different > > > > > > > > for > > > > > > > > > > me as an adult who lost many verbal and processing > skills as > > > > > > an > > > > > > > > adult > > > > > > > > > > than for a child who lost them as a toddler. > Besides which I > > > > > > > > have > > > > > > > > > > language skills, and a something like a heiracrchy > of > > > > > > difficulty > > > > > > > > with > > > > > > > > > > typing being the easiest and face to face > conversation with > > > > > > > > people I > > > > > > > > > > have strong emotions for being the toughest (other > than with > > > > > > my > > > > > > > > > > husband, haven't had face to face contact with > friends or > > > > > > family > > > > > > > > for > > > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings are > sadness > > > > > > for > > > > > > > > the > > > > > > > > > > loss, separateness, isolation. Most powerfully a > profound > > > > > > sense > > > > > > > > that > > > > > > > > > > I am unable to express or to be the person I am, so > > > sometimes > > > > > > > > > > frustration at being grossly misrepresented and not > able to > > > > > > set > > > > > > > > that > > > > > > > > > > straight. Guess I should've said that trying to > understand > > > > > > and > > > > > > > > > > communicate verbally frequently causes me acute > brain pain, > > > > > > very > > > > > > > > > > occasionally it seems like brain damage, and it's > that not > > > > > > > > mechanical > > > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but shout > if you'd > > > > > > like > > > > > > > > > > more. > > > > > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next so > I can do > > > > > > > > something > > > > > > > > > > for Sam > > > > > > > > > > > but mega busy and need time to concentrate on > that one. I > > > > > > did > > > > > > > > tap > > > > > > > > > > Sam after I > > > > > > > > > > > replied to you the other day but I am not sure I > can wrap > > > > > > my > > > > > > > > head > > > > > > > > > > around > > > > > > > > > > > feeling whats its like to be non verbal, he > thought I was > > > > > > mad > > > > > > > > > > doing it but was > > > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > > > <http://www.emofree.com> > > > > <http://www.emofree.com <http://www.emofree.com>> > > > > > <http://www.emofree.com <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>>> > > > > > > <http://www.emofree.com <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>> > > > > <http://www.emofree.com <http://www.emofree.com> > > > <http://www.emofree.com <http://www.emofree.com>>>>) > > > > > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > <http://www.avg.com <http://www.avg.com>> > > > > <http://www.avg.com <http://www.avg.com> <http://www.avg.com > > > <http://www.avg.com>>> > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - Release > Date: > > > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release Date: > > > 25/09/2008 07:05 > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 but if that connectivity has been there and then suddenly it's not, and some external factor is suspected in knackering that connection then surely that could be categorised as damage? The symptoms a lot of regressive kids show are akin to brain damage aren't they? That's certainly what I think of Tom's problem as, brain damage caused by a totally dicky metabolism in a totally toxic world. Steph x > > > > > > > > > > > > > > > > > > > > > > > > Thanks for all that Mandi. Much appreciated. > > > > > > > > > > > > > > > > > > > > > > > > As for what being non-verbal feels like, I'd > guess > > > > it's > > > > > > > > different > > > > > > > > > > for > > > > > > > > > > > > me as an adult who lost many verbal and > processing > > > > skills as > > > > > > > > an > > > > > > > > > > adult > > > > > > > > > > > > than for a child who lost them as a toddler. > > Besides > > > > which I > > > > > > > > > > have > > > > > > > > > > > > language skills, and a something like a > > heiracrchy of > > > > > > > > difficulty > > > > > > > > > > with > > > > > > > > > > > > typing being the easiest and face to face > > > > conversation with > > > > > > > > > > people I > > > > > > > > > > > > have strong emotions for being the toughest > (other > > > > than with > > > > > > > > my > > > > > > > > > > > > husband, haven't had face to face contact with > > > > friends or > > > > > > > > family > > > > > > > > > > for > > > > > > > > > > > > more than 2 years). > > > > > > > > > > > > > > > > > > > > > > > > Anyway, in my situation the strongest feelings > are > > > > sadness > > > > > > > > for > > > > > > > > > > the > > > > > > > > > > > > loss, separateness, isolation. Most powerfully a > > > > profound > > > > > > > > sense > > > > > > > > > > that > > > > > > > > > > > > I am unable to express or to be the person I > am, > > so > > > > sometimes > > > > > > > > > > > > frustration at being grossly misrepresented and > > not > > > > able to > > > > > > > > set > > > > > > > > > > that > > > > > > > > > > > > straight. Guess I should've said that trying to > > > > understand > > > > > > > > and > > > > > > > > > > > > communicate verbally frequently causes me acute > > brain > > > > pain, > > > > > > > > very > > > > > > > > > > > > occasionally it seems like brain damage, and > it's > > > > that not > > > > > > > > > > mechanical > > > > > > > > > > > > issues which most limit me. > > > > > > > > > > > > > > > > > > > > > > > > Likely Sam's situation is very different, but > > shout > > > > if you'd > > > > > > > > like > > > > > > > > > > > > more. > > > > > > > > > > > > > > > > > > > > > > > > Jacqui > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Need to watch the surrogate tapping ones next > > so I > > > > can do > > > > > > > > > > something > > > > > > > > > > > > for Sam > > > > > > > > > > > > > but mega busy and need time to concentrate on > > that > > > > one. I > > > > > > > > did > > > > > > > > > > tap > > > > > > > > > > > > Sam after I > > > > > > > > > > > > > replied to you the other day but I am not > sure I > > > > can wrap > > > > > > > > my > > > > > > > > > > head > > > > > > > > > > > > around > > > > > > > > > > > > > feeling whats its like to be non verbal, he > > thought > > > > I was > > > > > > > > mad > > > > > > > > > > > > doing it but was > > > > > > > > > > > > > super clam afterwards.............hmmmmmmmm > > > > > > > > > > > > > > > > > > > > > > > > > > _www.emofree.com_ (http://www.emofree.com > > > > <http://www.emofree.com> > > > > > > <http://www.emofree.com <http://www.emofree.com>> > > > > > > > <http://www.emofree.com <http://www.emofree.com> > > > > <http://www.emofree.com <http://www.emofree.com>>> > > > > > > > > <http://www.emofree.com <http://www.emofree.com> > > > > <http://www.emofree.com <http://www.emofree.com>> > > > > > > <http://www.emofree.com <http://www.emofree.com> > > > > <http://www.emofree.com <http://www.emofree.com>>>>) > > > > > > > > > > > > > > > > > > > > > > > > > > Mandi x > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -------------------------------------------------------- > -- > > > > > > > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > > > Checked by AVG - http://www.avg.com > <http://www.avg.com> > > > > <http://www.avg.com <http://www.avg.com>> > > > > > > <http://www.avg.com <http://www.avg.com> > <http://www.avg.com > > > > <http://www.avg.com>>> > > > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1689 - > Release > > > > Date: > > > > > > > 24/09/2008 18:51 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > ------ > > > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > > > > Version: 8.0.169 / Virus Database: 270.7.2/1690 - Release > > Date: > > > > 25/09/2008 07:05 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------------- > -- > > ------ > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG - http://www.avg.com > > > > Version: 8.0.169 / Virus Database: 270.7.3/1691 - Release Date: > > 25/09/2008 19:23 > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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