Guest guest Posted February 26, 2007 Report Share Posted February 26, 2007 hmmm could b his learning soemtimeswith a cleft i htink its harder i no with me they say with mine they sa that my deafness doesnt help eather lol > > Hi All, > > It's been a while since I posted about but I have some questions for > you all. > > is now 3 and a half....I feel like most of last year he spent > working > on his mobility skills, and it was around his 3rd birthday that he started > walking everywhere completely independently and made huge progress with > his > physical skills like climbing, balance etc. Since then our attention has > begun to focus on his speech (or lack of it!). > > Up til age 3 most of the speech therapy input and early years teachers who > visit us said that due to his global development delays they were not > surprised that his vocab was still very limited. I looked back in the > archives and saw that I posted questions about his lack of talking to the > listserv just before he was 3 and I was re-assured by lots of your replies > that it would take time and that we should use Makaton singing in the > meantime. We have recently been doing this and has 30 - 40 or so > signs > and has started to link 2 signs together. He picks up signs quickly. He > has > about 30-40 words as well but again uses them sparingly and many of > them sound nothing like the word he is trying to say. He will also sing > along to a little nursery rhyme but " Horse-y Horse-y don't you stop " > sounds > like " He ha, He Ha, ah ee dop " as so many constanant sounds are missing. > My worry at the moment is that his can't pronounce any of the S, Shh, Z, > T, > J, G sounds - anything which requires more pressure in the mouth. We have > been referred for investigation into submouccous cleft palate...some words > are improving in clarity, a few months ago " No " sounded like Maa now it is > Nooooooo! And he can do a great " open " " oooooPen! " But many other words > are > completely off, and for S sounds he just blows down his nose and can't > seem > to produce that sound at all. > > Does this sound familiar to anyone...do you have any advice?? > > is (In the UK, Mum to aged 3.5) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2007 Report Share Posted March 5, 2007 Thanks Ellen....it's interesting as is thought to have normal hearing, although he did have grommets for glue ear....do you have a submuccous cleft? Has anyone else got any thoughts about this mis-pronunciation of words, particularly constanants?? is (Mum to , UK, 3.5) > > hmmm could b his learning soemtimeswith a cleft i htink its harder i no > with > me they say with mine they sa that my deafness doesnt help eather lol > > On 26/02/07, is Wolfe <alexiswolfe@... <alexiswolfe%40gmail.com>> > wrote: > > > > Hi All, > > > > It's been a while since I posted about but I have some questions > for > > you all. > > > > is now 3 and a half....I feel like most of last year he spent > > working > > on his mobility skills, and it was around his 3rd birthday that he > started > > walking everywhere completely independently and made huge progress with > > his > > physical skills like climbing, balance etc. Since then our attention has > > begun to focus on his speech (or lack of it!). > > > > Up til age 3 most of the speech therapy input and early years teachers > who > > visit us said that due to his global development delays they were not > > surprised that his vocab was still very limited. I looked back in the > > archives and saw that I posted questions about his lack of talking to > the > > listserv just before he was 3 and I was re-assured by lots of your > replies > > that it would take time and that we should use Makaton singing in the > > meantime. We have recently been doing this and has 30 - 40 or so > > signs > > and has started to link 2 signs together. He picks up signs quickly. He > > has > > about 30-40 words as well but again uses them sparingly and many of > > them sound nothing like the word he is trying to say. He will also sing > > along to a little nursery rhyme but " Horse-y Horse-y don't you stop " > > sounds > > like " He ha, He Ha, ah ee dop " as so many constanant sounds are missing. > > My worry at the moment is that his can't pronounce any of the S, Shh, Z, > > T, > > J, G sounds - anything which requires more pressure in the mouth. We > have > > been referred for investigation into submouccous cleft palate...some > words > > are improving in clarity, a few months ago " No " sounded like Maa now it > is > > Nooooooo! And he can do a great " open " " oooooPen! " But many other words > > are > > completely off, and for S sounds he just blows down his nose and can't > > seem > > to produce that sound at all. > > > > Does this sound familiar to anyone...do you have any advice?? > > > > is (In the UK, Mum to aged 3.5) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2007 Report Share Posted March 5, 2007 is- Speech intelligibility is one of our biggest obstacles for Aubrie. She has a submucous cleft & highly arched palate. In addition to the structural issues, she has low muscle tone which must include oral muscles and cranial nerve " weakness " . Add to that her hearing impairment and you have a complex puzzle. She had a repair of her submucous cleft - Furlow Z-plasty. You can do a search and find some info on the procedure. We don't know if it helped or not. If it did, it didn't help enough. She's also had a summer of C-PAP therapy. It's basically a resistance training work-out for the speech muscles. You hold the CPAP mask over the child's face on a very low airflow while the child speaks. There is a protocol of particular speech sounds to make - nonsense words that provide the proper exercise. The child makes the sounds against the wind resistance of the CPAP. As with surgery, we think it may have helped, but not enough. With so many contributing factors to the speech puzzle, even if we get one piece set just right, it may not make the final picture any more clear. So we keep plugging along hoping that we'll get enough pieces of the puzzle in place to see the final image. We have two more possibilities. One is a palatal lift prosthesis. Basically, it's a retainer-type thing that goes further back to close off the palate in the throat more. It has to be anchored to the 8-year molars and Aubrie's are not in yet. Then there is the time it will take to get over the gag reflex of having this thing in your mouth. But it could make a big difference in the nasality of her speech and it's relatively non-invasive compared to surgery. There's also a rather nasty surgical option which we have gotten info about but have pretty much decided to avoid. Since it just attempts to correct the nasality, even if it did that well, it may not be enough to finish the puzzle. So we can't decide if it would be worth it. We think there are neurological issues because she will be able to make the sounds sometimes in isolation, can sometimes make them in conversation, but then sometimes cannot. There doesn't seem to be a rhyme or reason to it that we can identify. It's not that she's tired or has a cold or anything obvious. Even when doing speech testing - videoflouroscopy- we saw that she could produce a sound one moment and then not do it the very next moment. It's like she's neurologically misfiring - sometimes everything clicks perfectly but other times it's not. For Aubrie, I think the difficulty with creating some speech sounds is related to difficulty in managing airflow and in getting the right lip, teeth, or whatever closure and/or placement. Those problems can be related to oral structure (including palate), muscle tone, and neurological issues. It's very complicated and frustrating. We've used 3 different medical centers. We did not find all of the possible solutions in one place. And the possibilities are so complex that we need more than one opinion to consider. Michele W Aubrie's mom 9 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2007 Report Share Posted March 5, 2007 Michele, Thanks for your detailed reply. I like the jigsaw analogy. Like Aubrie, with there are so many things which could be contributing to the overall picture, and some of them like the submuccous cleft haven't even been ruled in or out yet. I have a couple more ?'s if you don't mind me asking...? Does Aubrie speak in full sentences? Do all immediate family members understand her speech (I guess I am trying to work out if Grandma's, siblings and co will be able to follow 's) , I am also guessing it is hard for peers to follow her speech? Does she / did she use sign to support her speech for those that can't understand it...that is what early years teachers are suggesting we do with ...use Makaton signs to help others understand, but of course they need to know the signs too so it isn't a full solution. Thanks again, is (Mum to ) > > is- > > Speech intelligibility is one of our biggest obstacles for Aubrie. She has > a submucous cleft & highly arched palate. In addition to the structural > issues, she has low muscle tone which must include oral muscles and > cranial > nerve " weakness " . Add to that her hearing impairment and you have a > complex > puzzle. > > She had a repair of her submucous cleft - Furlow Z-plasty. You can do a > search and find some info on the procedure. We don't know if it helped or > not. If it did, it didn't help enough. > > She's also had a summer of C-PAP therapy. It's basically a resistance > training work-out for the speech muscles. You hold the CPAP mask over the > child's face on a very low airflow while the child speaks. There is a > protocol of particular speech sounds to make - nonsense words that provide > the proper exercise. The child makes the sounds against the wind > resistance > of the CPAP. As with surgery, we think it may have helped, but not enough. > > With so many contributing factors to the speech puzzle, even if we get one > piece set just right, it may not make the final picture any more clear. So > we keep plugging along hoping that we'll get enough pieces of the puzzle > in > place to see the final image. > > We have two more possibilities. One is a palatal lift prosthesis. > Basically, it's a retainer-type thing that goes further back to close off > the palate in the throat more. It has to be anchored to the 8-year molars > and Aubrie's are not in yet. Then there is the time it will take to get > over the gag reflex of having this thing in your mouth. But it could make > a > big difference in the nasality of her speech and it's relatively > non-invasive compared to surgery. > > There's also a rather nasty surgical option which we have gotten info > about > but have pretty much decided to avoid. Since it just attempts to correct > the nasality, even if it did that well, it may not be enough to finish the > puzzle. So we can't decide if it would be worth it. > > We think there are neurological issues because she will be able to make > the > sounds sometimes in isolation, can sometimes make them in conversation, > but > then sometimes cannot. There doesn't seem to be a rhyme or reason to it > that we can identify. It's not that she's tired or has a cold or anything > obvious. Even when doing speech testing - videoflouroscopy- we saw that > she could produce a sound one moment and then not do it the very next > moment. It's like she's neurologically misfiring - sometimes everything > clicks perfectly but other times it's not. > > For Aubrie, I think the difficulty with creating some speech sounds is > related to difficulty in managing airflow and in getting the right lip, > teeth, or whatever closure and/or placement. Those problems can be related > to oral structure (including palate), muscle tone, and neurological > issues. > > It's very complicated and frustrating. We've used 3 different medical > centers. We did not find all of the possible solutions in one place. And > the possibilities are so complex that we need more than one opinion to > consider. > > Michele W > Aubrie's mom 9 yrs > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2007 Report Share Posted March 5, 2007 is- Does Aubrie speak in full sentences? Yes - she has good language skills - but poor speech. Do all immediate family members understand her speech (I guess I am trying to work out if Grandma's, siblings and co will be able to follow 's) Familiar people understand her most of the time. I still have to ask her to repeat sometimes. I am also guessing it is hard for peers to follow her speech? Yes - the ones who know her best can understand her well. But those who don't pay close attention and don't interact with her regularly have a hard time. Does she / did she use sign to support her speech for those that can't understand it...that is what early years teachers are suggesting we do with ...use Makaton signs to help others understand, but of course they need to know the signs too so it isn't a full solution. She began with sign as an infant. At age 2 yrs, she had nearly 75 signs and only 10 spoken words. By age 4, she was nearly 100% verbal and had dropped most signs. This year, she went to the school for the deaf to learn sign anticipating that she'd need it for receptive support in upper level classes - junior high and high school lecture-type situations. She has always been able to clarify by giving clues - like " it starts with a b " or giving more info. Signing for clarification only works with me because no one else in our family or in the school has known sign. And her signs are not clear either so you have to know her sign - not the actual sign. I think sign or any other way you can help to clarify what he means will be helpful to him as he continues to work on his speech. If he's surrounded by people that sign, then sign is a natural support. In my opinion, our kids can all benefit from being bilingual in speech and sign since they are a part of the deaf community and will often need sign to communicate with their CHARGE peers. In Aubrie's case, we think the dual modality supports her learning since she can see and hear and feel the words all at once. Thanks again, is (Mum to ) On 3/5/07, Michele Westmaas <momonamission@ <mailto:momonamission%40verizon.net> verizon.net> wrote: > > is- > > Speech intelligibility is one of our biggest obstacles for Aubrie. She has > a submucous cleft & highly arched palate. In addition to the structural > issues, she has low muscle tone which must include oral muscles and > cranial > nerve " weakness " . Add to that her hearing impairment and you have a > complex > puzzle. > > She had a repair of her submucous cleft - Furlow Z-plasty. You can do a > search and find some info on the procedure. We don't know if it helped or > not. If it did, it didn't help enough. > > She's also had a summer of C-PAP therapy. It's basically a resistance > training work-out for the speech muscles. You hold the CPAP mask over the > child's face on a very low airflow while the child speaks. There is a > protocol of particular speech sounds to make - nonsense words that provide > the proper exercise. The child makes the sounds against the wind > resistance > of the CPAP. As with surgery, we think it may have helped, but not enough. > > With so many contributing factors to the speech puzzle, even if we get one > piece set just right, it may not make the final picture any more clear. So > we keep plugging along hoping that we'll get enough pieces of the puzzle > in > place to see the final image. > > We have two more possibilities. One is a palatal lift prosthesis. > Basically, it's a retainer-type thing that goes further back to close off > the palate in the throat more. It has to be anchored to the 8-year molars > and Aubrie's are not in yet. Then there is the time it will take to get > over the gag reflex of having this thing in your mouth. But it could make > a > big difference in the nasality of her speech and it's relatively > non-invasive compared to surgery. > > There's also a rather nasty surgical option which we have gotten info > about > but have pretty much decided to avoid. Since it just attempts to correct > the nasality, even if it did that well, it may not be enough to finish the > puzzle. So we can't decide if it would be worth it. > > We think there are neurological issues because she will be able to make > the > sounds sometimes in isolation, can sometimes make them in conversation, > but > then sometimes cannot. There doesn't seem to be a rhyme or reason to it > that we can identify. It's not that she's tired or has a cold or anything > obvious. Even when doing speech testing - videoflouroscopy- we saw that > she could produce a sound one moment and then not do it the very next > moment. It's like she's neurologically misfiring - sometimes everything > clicks perfectly but other times it's not. > > For Aubrie, I think the difficulty with creating some speech sounds is > related to difficulty in managing airflow and in getting the right lip, > teeth, or whatever closure and/or placement. Those problems can be related > to oral structure (including palate), muscle tone, and neurological > issues. > > It's very complicated and frustrating. We've used 3 different medical > centers. We did not find all of the possible solutions in one place. And > the possibilities are so complex that we need more than one opinion to > consider. > > Michele W > Aubrie's mom 9 yrs > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2007 Report Share Posted March 6, 2007 alexis my cleft is sort of subcutatnious its got a dent hole thingy but ive never thought if its subcutanious its got like a dent theing the hape of a round hole where its been repared and that goes in a bit but not much > > is- > > Does Aubrie speak in full sentences? Yes - she has good language skills - > but poor speech. > > Do all immediate family members understand her speech (I guess I am trying > to work out if Grandma's, siblings and co will be able to follow 's) > Familiar people understand her most of the time. I still have to ask her > to > repeat sometimes. > > I am also guessing it is hard for peers to follow her speech? Yes - the > ones who know her best can understand her well. But those who don't pay > close attention and don't interact with her regularly have a hard time. > > Does she / did she use sign to support her speech for those that can't > understand it...that is what early years teachers are suggesting we do > with > ...use Makaton signs to help others understand, but of course they > need > to know the signs too so it isn't a full solution. She began with sign as > an infant. At age 2 yrs, she had nearly 75 signs and only 10 spoken words. > By age 4, she was nearly 100% verbal and had dropped most signs. This > year, > she went to the school for the deaf to learn sign anticipating that she'd > need it for receptive support in upper level classes - junior high and > high > school lecture-type situations. She has always been able to clarify by > giving clues - like " it starts with a b " or giving more info. Signing for > clarification only works with me because no one else in our family or in > the > school has known sign. And her signs are not clear either so you have to > know her sign - not the actual sign. I think sign or any other way you can > help to clarify what he means will be helpful to him as he continues > to work on his speech. If he's surrounded by people that sign, then sign > is > a natural support. In my opinion, our kids can all benefit from being > bilingual in speech and sign since they are a part of the deaf community > and > will often need sign to communicate with their CHARGE peers. In Aubrie's > case, we think the dual modality supports her learning since she can see > and > hear and feel the words all at once. > > Thanks again, > is (Mum to ) > > On 3/5/07, Michele Westmaas <momonamission@ > <mailto:momonamission%40verizon.net> verizon.net> wrote: > > > > is- > > > > Speech intelligibility is one of our biggest obstacles for Aubrie. She > has > > a submucous cleft & highly arched palate. In addition to the structural > > issues, she has low muscle tone which must include oral muscles and > > cranial > > nerve " weakness " . Add to that her hearing impairment and you have a > > complex > > puzzle. > > > > She had a repair of her submucous cleft - Furlow Z-plasty. You can do a > > search and find some info on the procedure. We don't know if it helped > or > > not. If it did, it didn't help enough. > > > > She's also had a summer of C-PAP therapy. It's basically a resistance > > training work-out for the speech muscles. You hold the CPAP mask over > the > > child's face on a very low airflow while the child speaks. There is a > > protocol of particular speech sounds to make - nonsense words that > provide > > the proper exercise. The child makes the sounds against the wind > > resistance > > of the CPAP. As with surgery, we think it may have helped, but not > enough. > > > > With so many contributing factors to the speech puzzle, even if we get > one > > piece set just right, it may not make the final picture any more clear. > So > > we keep plugging along hoping that we'll get enough pieces of the puzzle > > in > > place to see the final image. > > > > We have two more possibilities. One is a palatal lift prosthesis. > > Basically, it's a retainer-type thing that goes further back to close > off > > the palate in the throat more. It has to be anchored to the 8-year > molars > > and Aubrie's are not in yet. Then there is the time it will take to get > > over the gag reflex of having this thing in your mouth. But it could > make > > a > > big difference in the nasality of her speech and it's relatively > > non-invasive compared to surgery. > > > > There's also a rather nasty surgical option which we have gotten info > > about > > but have pretty much decided to avoid. Since it just attempts to correct > > the nasality, even if it did that well, it may not be enough to finish > the > > puzzle. So we can't decide if it would be worth it. > > > > We think there are neurological issues because she will be able to make > > the > > sounds sometimes in isolation, can sometimes make them in conversation, > > but > > then sometimes cannot. There doesn't seem to be a rhyme or reason to it > > that we can identify. It's not that she's tired or has a cold or > anything > > obvious. Even when doing speech testing - videoflouroscopy- we saw that > > she could produce a sound one moment and then not do it the very next > > moment. It's like she's neurologically misfiring - sometimes everything > > clicks perfectly but other times it's not. > > > > For Aubrie, I think the difficulty with creating some speech sounds is > > related to difficulty in managing airflow and in getting the right lip, > > teeth, or whatever closure and/or placement. Those problems can be > related > > to oral structure (including palate), muscle tone, and neurological > > issues. > > > > It's very complicated and frustrating. We've used 3 different medical > > centers. We did not find all of the possible solutions in one place. And > > the possibilities are so complex that we need more than one opinion to > > consider. > > > > Michele W > > Aubrie's mom 9 yrs > > > > Quote Link to comment Share on other sites More sharing options...
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