Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Hi Vicky Why don't you try RDI? All of us develop the ability to speak only after we have learned to communicate non-verbally and in a way that is coordinated with our interaction partners. I will share with you something another parent shared with me when I was first trying to understand RDI - if a child is deprived (through the neurological insult) of the opportunity to develop non-verbal communication and emotional coordination then expecting them to speak without first learning non verbal communication and emotional coordination is like expecting a child to be able to do quadratic equations without having studied algebra. There is a SaLT who is also an RDI Consultant who posts regularly on the RDI-UK list - you are most welcome to come on there and chat to her. Even if you dont want to do RDI I am sure she would have some pointers from a SaLT perspective that could help. Or if you prefer (with her permission) I could put you in touch off list. Zoe > > 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 My boy does this ALL THE TIME, actually puts his hand over my mouth~and i have a pretty good voice~ i bought that booklet you talked about. She says that almost all kids on teh spectrum have perfect pitch or if not perfect, then very good pitch. interesting. > > > > > > 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 Cant afford one more intervention, Zoe, could you give us some examples of what happens in RDI eg, what would you do to help your child to ask a question? or even to choose something? > > > > 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 do the RDi people provide free stuff online/ videos, etc? we couldnt have found rdi useful in the early days but as language progresses, i can see use for it now. > > 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 Caudwell are now funding RDI. Z x > > 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 No they dont unfortunately - its a very closed community.....they are anxious about protecting the integrity of the intervention (and I believe it is that rather than anything financially driven, which they often get accused of). It cant really be done effectively unless a family has a Consultant and uses the online RDI system. It's a big committment to make both financially (although not compared to ABA which I understand can cost up to £30K whereas RDI is about £7K pa) and psychologically I think. Zoe > > > > 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 It really doesnt work like that. There is no focus on speech at all - the focus is on coordinating communication through the same process that non ASD kids go through (guided participation) except that in RDI you go right back to the beginning and it is extremely slowed down so that it can be built up again in tiny increments - with the developmental building blocks in the right order. This process also leads to the development of dynamic competence/flexible thinking ie children lose their rigidity and need for sameness, frustration tolerance increases, competence increases and anxiety decreases........because children are feeling the payoffs of coordinating their interactions, are constantly having their success spotlighted and are never pushed to do something that is too far out of their developmental framework. When I do RDI with Philip I try not to use speech at all (or at least to keep it to a minimum). It is much easier to do RDI with a non verbal child than a verbal child. We spent ages (at least a year) trying to get over the block of P's need to control interactions verbally. It was incredibly hard work. Recently I asked P what he thought RDI did to help (we dont have to do it by stealth now, we can name it RDI and he is ok with it) and he said: " Well when you do RDI it makes you be nice..........and it also helps you to be nice when you're not doing it " At his new school, he is a kid magnet. They are mostly younger and it is a very small school but they all love him and are always coming up to hug him. If you want to know about RDI as used by a SaLT then please join the RDI-UK list and ask Cheryl (she is an RDI Consultant who is also a SaLT) - she is much better placed than I am to answer your questions. Sorry I cant give an easy answer Zoe > > > > > > 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 27, 2008 Report Share Posted September 27, 2008 I don't think perfect pitch is necessarily a good thing (although it sounds good) because it's inflexible and leads to the ear covering etc that we discussed earlier. Sally stephaniesirr wrote: > > 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>>>> > > > > > > > <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 > 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 27, 2008 Report Share Posted September 27, 2008 Vicky, Have you looked at Diane Bahr of ages and stages. She comes over to the UK occasionally to consult with parents and run workshops. I don't think she charges a fortune. I've seen a programme that she has suggested for a child with severe speech problems - it was very concise and would be easy to implement at home (and school). She has a website. We found vb good to get started by using imitation, then manding, sign also helped. Kaufmans kits were brilliant for work on articulation. Not sure if 'prompt' is the same as cued articulation? We have used the latter and found it really helped. Jane MaddiganV@... wrote: 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 27, 2008 Report Share Posted September 27, 2008 Yes Its amazing really. I go into him when he is singing at night to try and settle him and he is fast asleep, eyes shut tight, singing and rocking from side to side. Its as if his brain just can't switch off and relax even in his sleep. He went on a 1 night residential with school just before the summer hols and the teacher who slept in the same room as him was amazed as well. 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 28, 2008 Report Share Posted September 28, 2008 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. >>We are in year 8 Vicky and ditto all of it for Sam (excpet he doesn't even hum, very vocal though..........HANDLE course was brill, very hopeful this might help us eventually with the speech. was premmie as I recall? That kept coming up a lot during the course, most specifically relating to long periods in static incubators, restrained to stop them pulling out drips and stuff. Babies need movement to develop all sorts of systems. Info still in RAM memory, need to download but would highly recommend it as an intro course Mandi x Keep on buggering on as Di says......where is Di anyways, harebigears are you out there? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 At present he is singing The Kinks "You Really Got me", most of thefirst verse and chorus (or approximations). It might be a differntpart of hte brain but it's still good practise. And it's so COOL whenhis VB teachers hear his great taste in music and say "wow, thatsounds just like, my god it is The Kinks.." >>>>This is awesome, can't get the song outta my head now! Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2008 Report Share Posted October 4, 2008 > > > In a message dated 26/09/2008 20:04:51 GMT Daylight Time, > rinze.brouwer@... writes: > > ,I follow this thread with interest for our daughter Nynke lost her > verbal skills complete between 5 amd 8 years, but at that age she could > hear a melody and repeat it on the organ without a failure. > When she was 8 we started with biomedical treatment and Growing Minds > therapy and gradually her speech came back > > > >>>Congratulations Wimmie! What happened before she lost her language? > > Mandi x > Sorry Mandy,that I did not answer sooner! It is difficult to say,what happened excactly: we adopted her when she was almost 17 month.We knew she was blind(she was a specially needs baby) When she came home she was very hypotonic,like a new born baby!But she was babbling(making sounds like mama)After some days she was very ill and stopped making noises for about 4 month.then she started talking in small sentences. At that time she often was in the hospital because of problems with her heart and often came home with a white rash on her tongue After a treatment with nystatin it always recovered and her language also was better for a while.At that time 13/14 years ago I did not know of yeast etc. Gradually her active language disappeared complet.We did not realise she had autism until she was about 6.Before that time she was diagnosed as a child with attachment disorder and mutism.But the strange thing was she could sing (with real words) Wimmie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 , Do you think there was a trigger for the speech loss? Sorry if I have asked this question before :-)) stephaniesirr schrieb: > > 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 <http://www.emofree.com>) > > > > > > Mandi x > > > > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG. > Version: 7.5.526 / Virus Database: 270.7.1/1687 - Release Date: 23/09/2008 18:32 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2008 Report Share Posted October 19, 2008 Wow thats unreal, about your own difficulty with speech. I have trouble when people ask me questions. Its like I cant answer, so I get real mad and snap at my loved ones, like I get real defesive like why do you want to know that for, because I can t answer. I think its to do with my amaglam fillings. I have had four of them out but once I ve got them all out I am going to detox with ALA, we have my son on it, and yesterday he said OH NO DRINK ALL GONE. Thats the longest sentace I ever hear him say. > > > > > > 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>) > > > > > > > > Mandi x > > > > > > > > > > > > > ------------------------------------------------------------------ ------ > > > > No virus found in this incoming message. > > Checked by AVG. > > Version: 7.5.526 / Virus Database: 270.7.1/1687 - Release Date: 23/09/2008 18:32 > > > Quote Link to comment Share on other sites More sharing options...
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