Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Just a thought on the hand flapping. So often this is seen as a negative behavior that must be extinguished (mainly because teachers or some other authority person doesn't like it - it doesn't look normal). Dr. van Dijk suggests that instead of stimming, indicating lack of interest or refusing to participate in an activity, this can often be how our children process information they have just received. It can be a way of saying I have taken in enough information for now, and now I need a chance for my brain to understand it. I believe this is true for Dylan. mentioned in CA that a teacher did not like Kendra waving her hands, so now Kendra makes a loud blowing noise when she has had enough input. If our kids need time to process they will find a way, no matter what behavior we " extinguish " . We can only hope that the new behavior is less offensive than the first, but I wouldn't count on it. Kim Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy ---------- > >To: CHARGE >Subject: Re: HELP! >Date: Thu, May 30, 2002, 7:00 PM > > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her > hands though and can't sit still when she is excited or wants to tell a > story (sigh). Her teacher has taught her to put her hands in her lap, and > that has helped a bit! > > Regards, > > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion > kindergarten in 3 weeks!) > > > Graeme & Weir wrote: > >> Traci, >> I think there are a fair number of children with CHARGE who have Cochlear > Implants. From what I hear, the anatomies seem to be different when the > docs get inside and the surgery ends up taking longer as things need to get > re-routed in a different manner sometimes. I know a child with CHARGE > personally who has a C.I. and she is definitely benefitting from it. It's > an intensely difficult personal decision and I wish you the best of luck in > making it. >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT > reminding or putting her hands down or especially getting her doing > something else, busy beads, play dough, keys, whatever we could give her to > distract her to something else. Now, we are finding it is the thumb > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the > point of it just breaking off at the ends. The only solution for that has > been hair up in pig tails every day, then she only twirls her bangs, which > are short and can't knot up as badly. >> >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good > luck, it is very difficult to deal with any kind of self abusing behaviour. >> ~ Weir >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme >> New Brunswick, Canada >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir >> ICQ# 1426476 >> >> HELP! >> >> Hi Everyone, >> I have not been on in a while. My name is and my daughter >> is Eileen Valentine and we used to live in Knoxville, TN and we now >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does >> anyone have a problem with their child pulling their hair out. >> Eileen now has a blad spot on the top of her head because of this and >> I don't know what to do. I also am wondering does any of the CHARGE >> kids have a coclear implant? Eileen is profound in both ears and >> gets no benefit from aids so I thought about it but I am just not >> sure. I think there are a lot of people out there that want her to >> get and they want to use her as a guinny pig. Are there any families >> in the Sacramento area with Charge kids? I would really like to meet >> other families with our beautiful children. If there is anyone out >> there that can give me advise I sure could use it before she has no >> hair left! If there is anyone here that needs a tupperware >> consultant you can visit my website at >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I >> could spend and take care of my family. Thank you for any advise you >> can give me. >> >> Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter) >> please contact marion@... or visit >> the CHARGE Syndrome Foundation web page >> at http://www.chargesyndrome.org >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, >> July 25-27, 2003. Information will be available at our website >> www.chargesyndrome.org or by calling 1-. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Just a thought on the hand flapping. So often this is seen as a negative behavior that must be extinguished (mainly because teachers or some other authority person doesn't like it - it doesn't look normal). Dr. van Dijk suggests that instead of stimming, indicating lack of interest or refusing to participate in an activity, this can often be how our children process information they have just received. It can be a way of saying I have taken in enough information for now, and now I need a chance for my brain to understand it. I believe this is true for Dylan. mentioned in CA that a teacher did not like Kendra waving her hands, so now Kendra makes a loud blowing noise when she has had enough input. If our kids need time to process they will find a way, no matter what behavior we " extinguish " . We can only hope that the new behavior is less offensive than the first, but I wouldn't count on it. Kim Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy ---------- > >To: CHARGE >Subject: Re: HELP! >Date: Thu, May 30, 2002, 7:00 PM > > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her > hands though and can't sit still when she is excited or wants to tell a > story (sigh). Her teacher has taught her to put her hands in her lap, and > that has helped a bit! > > Regards, > > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion > kindergarten in 3 weeks!) > > > Graeme & Weir wrote: > >> Traci, >> I think there are a fair number of children with CHARGE who have Cochlear > Implants. From what I hear, the anatomies seem to be different when the > docs get inside and the surgery ends up taking longer as things need to get > re-routed in a different manner sometimes. I know a child with CHARGE > personally who has a C.I. and she is definitely benefitting from it. It's > an intensely difficult personal decision and I wish you the best of luck in > making it. >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT > reminding or putting her hands down or especially getting her doing > something else, busy beads, play dough, keys, whatever we could give her to > distract her to something else. Now, we are finding it is the thumb > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the > point of it just breaking off at the ends. The only solution for that has > been hair up in pig tails every day, then she only twirls her bangs, which > are short and can't knot up as badly. >> >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good > luck, it is very difficult to deal with any kind of self abusing behaviour. >> ~ Weir >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme >> New Brunswick, Canada >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir >> ICQ# 1426476 >> >> HELP! >> >> Hi Everyone, >> I have not been on in a while. My name is and my daughter >> is Eileen Valentine and we used to live in Knoxville, TN and we now >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does >> anyone have a problem with their child pulling their hair out. >> Eileen now has a blad spot on the top of her head because of this and >> I don't know what to do. I also am wondering does any of the CHARGE >> kids have a coclear implant? Eileen is profound in both ears and >> gets no benefit from aids so I thought about it but I am just not >> sure. I think there are a lot of people out there that want her to >> get and they want to use her as a guinny pig. Are there any families >> in the Sacramento area with Charge kids? I would really like to meet >> other families with our beautiful children. If there is anyone out >> there that can give me advise I sure could use it before she has no >> hair left! If there is anyone here that needs a tupperware >> consultant you can visit my website at >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I >> could spend and take care of my family. Thank you for any advise you >> can give me. >> >> Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter) >> please contact marion@... or visit >> the CHARGE Syndrome Foundation web page >> at http://www.chargesyndrome.org >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, >> July 25-27, 2003. Information will be available at our website >> www.chargesyndrome.org or by calling 1-. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 In a message dated 6/1/2002 11:10:41 AM Central Daylight Time, gweir@... writes: > You will hopefully be seeing Kennedy's " hand-flapping " next year in > Cleveland...we are looking at the whole family coming... > Can't wait to see you guys & you too ! > ~ Weir > , Have you surmounted the medical issues as far as insurance, etc. in bringing Kennedy to the US for the conference? It would be great to get to meet her! And I will try *not* to hand-flap! LOL Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , How far is Cleveland from the Canadian border? Glad to hear she's doing well medically. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , You've got quite a trek ahead of you. Are you going to make it a longer vacation or just drive straight on the way there and on the way back? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , You've got quite a trek ahead of you. Are you going to make it a longer vacation or just drive straight on the way there and on the way back? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , You've got quite a trek ahead of you. Are you going to make it a longer vacation or just drive straight on the way there and on the way back? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , We drive about 9 hours to get to land for the conference. We've learned to travel at night so that the kids are sleeping. We have to remember to put the seabands on 's wrists or we have a vomit machine in the back seat! Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , We drive about 9 hours to get to land for the conference. We've learned to travel at night so that the kids are sleeping. We have to remember to put the seabands on 's wrists or we have a vomit machine in the back seat! Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 , We drive about 9 hours to get to land for the conference. We've learned to travel at night so that the kids are sleeping. We have to remember to put the seabands on 's wrists or we have a vomit machine in the back seat! Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 I have a brother that flapps too ,He used to do it when every he got excited or really happy....now the only time I see him do it is when he paints.... He s 23 years old and does have anything wrongwith him.... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 It's about 6 hrs from Toronto (Cleveland)...unfortunately though, Toronto is about 15-17 hrs away from me, so we have a LOOOOOOONG drive... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: HELP! , How far is Cleveland from the Canadian border? Glad to hear she's doing well medically. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 It's about 6 hrs from Toronto (Cleveland)...unfortunately though, Toronto is about 15-17 hrs away from me, so we have a LOOOOOOONG drive... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: HELP! , How far is Cleveland from the Canadian border? Glad to hear she's doing well medically. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 It's about 6 hrs from Toronto (Cleveland)...unfortunately though, Toronto is about 15-17 hrs away from me, so we have a LOOOOOOONG drive... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: HELP! , How far is Cleveland from the Canadian border? Glad to hear she's doing well medically. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Janet, We haven't looked at the logistics as of yet.... We just hope to make it in one piece, with no major WARS... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: HELP! , You've got quite a trek ahead of you. Are you going to make it a longer vacation or just drive straight on the way there and on the way back? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Kim, When I ask Penina why she is flapping her hands, she'll answer " I'm just so excited! " She knows, but she doesn't stop it! :-) Anne Kim Lauger wrote: > Just a thought on the hand flapping. > > So often this is seen as a negative behavior that must be extinguished > (mainly because teachers or some other authority person doesn't like it - it > doesn't look normal). > > Dr. van Dijk suggests that instead of stimming, indicating lack of interest > or refusing to participate in an activity, this can often be how our > children process information they have just received. It can be a way of > saying I have taken in enough information for now, and now I need a chance > for my brain to understand it. > > I believe this is true for Dylan. mentioned in CA that a teacher did > not like Kendra waving her hands, so now Kendra makes a loud blowing noise > when she has had enough input. > > If our kids need time to process they will find a way, no matter what > behavior we " extinguish " . We can only hope that the new behavior is less > offensive than the first, but I wouldn't count on it. > > Kim > Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy > > ---------- > > > >To: CHARGE > >Subject: Re: HELP! > >Date: Thu, May 30, 2002, 7:00 PM > > > > > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her > > hands though and can't sit still when she is excited or wants to tell a > > story (sigh). Her teacher has taught her to put her hands in her lap, and > > that has helped a bit! > > > > Regards, > > > > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion > > kindergarten in 3 weeks!) > > > > > > Graeme & Weir wrote: > > > >> Traci, > >> I think there are a fair number of children with CHARGE who have Cochlear > > Implants. From what I hear, the anatomies seem to be different when the > > docs get inside and the surgery ends up taking longer as things need to get > > re-routed in a different manner sometimes. I know a child with CHARGE > > personally who has a C.I. and she is definitely benefitting from it. It's > > an intensely difficult personal decision and I wish you the best of luck in > > making it. > >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in > > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT > > reminding or putting her hands down or especially getting her doing > > something else, busy beads, play dough, keys, whatever we could give her to > > distract her to something else. Now, we are finding it is the thumb > > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the > > point of it just breaking off at the ends. The only solution for that has > > been hair up in pig tails every day, then she only twirls her bangs, which > > are short and can't knot up as badly. > >> > >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good > > luck, it is very difficult to deal with any kind of self abusing behaviour. > >> ~ Weir > >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme > >> New Brunswick, Canada > >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir > >> ICQ# 1426476 > >> > >> HELP! > >> > >> Hi Everyone, > >> I have not been on in a while. My name is and my daughter > >> is Eileen Valentine and we used to live in Knoxville, TN and we now > >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does > >> anyone have a problem with their child pulling their hair out. > >> Eileen now has a blad spot on the top of her head because of this and > >> I don't know what to do. I also am wondering does any of the CHARGE > >> kids have a coclear implant? Eileen is profound in both ears and > >> gets no benefit from aids so I thought about it but I am just not > >> sure. I think there are a lot of people out there that want her to > >> get and they want to use her as a guinny pig. Are there any families > >> in the Sacramento area with Charge kids? I would really like to meet > >> other families with our beautiful children. If there is anyone out > >> there that can give me advise I sure could use it before she has no > >> hair left! If there is anyone here that needs a tupperware > >> consultant you can visit my website at > >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I > >> could spend and take care of my family. Thank you for any advise you > >> can give me. > >> > >> Membership of this email support groups does not constitute membership > > in the CHARGE Syndrome Foundation. > >> For information about the CHARGE Syndrome > >> Foundation or to become a member (and get the newsletter) > >> please contact marion@... or visit > >> the CHARGE Syndrome Foundation web page > >> at http://www.chargesyndrome.org > >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > >> July 25-27, 2003. Information will be available at our website > >> www.chargesyndrome.org or by calling 1-. > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 How wonderful that she can tell you. Kim ---------- > >To: CHARGE >Subject: Re: HELP! >Date: Tue, Jun 4, 2002, 5:55 PM > > Kim, > > When I ask Penina why she is flapping her hands, she'll answer " I'm just so > excited! " She knows, but she > doesn't stop it! > > :-) > > Anne > > > Kim Lauger wrote: > >> Just a thought on the hand flapping. >> >> So often this is seen as a negative behavior that must be extinguished >> (mainly because teachers or some other authority person doesn't like it - it >> doesn't look normal). >> >> Dr. van Dijk suggests that instead of stimming, indicating lack of interest >> or refusing to participate in an activity, this can often be how our >> children process information they have just received. It can be a way of >> saying I have taken in enough information for now, and now I need a chance >> for my brain to understand it. >> >> I believe this is true for Dylan. mentioned in CA that a teacher did >> not like Kendra waving her hands, so now Kendra makes a loud blowing noise >> when she has had enough input. >> >> If our kids need time to process they will find a way, no matter what >> behavior we " extinguish " . We can only hope that the new behavior is less >> offensive than the first, but I wouldn't count on it. >> >> Kim >> Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy >> >> ---------- >> > >> >To: CHARGE >> >Subject: Re: HELP! >> >Date: Thu, May 30, 2002, 7:00 PM >> > >> >> > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her >> > hands though and can't sit still when she is excited or wants to tell a >> > story (sigh). Her teacher has taught her to put her hands in her lap, and >> > that has helped a bit! >> > >> > Regards, >> > >> > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion >> > kindergarten in 3 weeks!) >> > >> > >> > Graeme & Weir wrote: >> > >> >> Traci, >> >> I think there are a fair number of children with CHARGE who have Cochlear >> > Implants. From what I hear, the anatomies seem to be different when the >> > docs get inside and the surgery ends up taking longer as things need to get >> > re-routed in a different manner sometimes. I know a child with CHARGE >> > personally who has a C.I. and she is definitely benefitting from it. It's >> > an intensely difficult personal decision and I wish you the best of luck in >> > making it. >> >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in >> > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT >> > reminding or putting her hands down or especially getting her doing >> > something else, busy beads, play dough, keys, whatever we could give her to >> > distract her to something else. Now, we are finding it is the thumb >> > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the >> > point of it just breaking off at the ends. The only solution for that has >> > been hair up in pig tails every day, then she only twirls her bangs, which >> > are short and can't knot up as badly. >> >> >> >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good >> > luck, it is very difficult to deal with any kind of self abusing behaviour. >> >> ~ Weir >> >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme >> >> New Brunswick, Canada >> >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir >> >> ICQ# 1426476 >> >> >> >> HELP! >> >> >> >> Hi Everyone, >> >> I have not been on in a while. My name is and my daughter >> >> is Eileen Valentine and we used to live in Knoxville, TN and we now >> >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does >> >> anyone have a problem with their child pulling their hair out. >> >> Eileen now has a blad spot on the top of her head because of this and >> >> I don't know what to do. I also am wondering does any of the CHARGE >> >> kids have a coclear implant? Eileen is profound in both ears and >> >> gets no benefit from aids so I thought about it but I am just not >> >> sure. I think there are a lot of people out there that want her to >> >> get and they want to use her as a guinny pig. Are there any families >> >> in the Sacramento area with Charge kids? I would really like to meet >> >> other families with our beautiful children. If there is anyone out >> >> there that can give me advise I sure could use it before she has no >> >> hair left! If there is anyone here that needs a tupperware >> >> consultant you can visit my website at >> >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I >> >> could spend and take care of my family. Thank you for any advise you >> >> can give me. >> >> >> >> Membership of this email support groups does not constitute membership >> > in the CHARGE Syndrome Foundation. >> >> For information about the CHARGE Syndrome >> >> Foundation or to become a member (and get the newsletter) >> >> please contact marion@... or visit >> >> the CHARGE Syndrome Foundation web page >> >> at http://www.chargesyndrome.org >> >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, >> >> July 25-27, 2003. Information will be available at our website >> >> www.chargesyndrome.org or by calling 1-. >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Kim, I am grateful for so many things - one of Penina's strongest skills is that she can express herself so effectively (and she has a good bullshit detector). I sometimes think that she is 40 years old! She was diagnosed with CHARGE at about 5 days old. Within a week or two we had tremendous support in place. They trained us, and Penina was stimulated - both her vision and hearing were involved - from the beginning. Fortunately she loved it and didn't rebel. I would hold my 10 day old on my lap and read and read and make her touch the soft bunny, etc. I am now reading to her (a chapter a night) " The Secret Garden " and she is enchanted. Just in time for our (very late) spring... But even if Penina wouldn't have been able to understand language, I think that she would have benefited from the voice and touch (she wasn't too tactile defensive but she also had early sensory integration therapy!)... Best regards, Anne, mom of Penina (CHArgE, 5 3/4 years old) Montreal, just before Grand Prix weekend Kim Lauger wrote: > How wonderful that she can tell you. Kim > > ---------- > > > >To: CHARGE > >Subject: Re: HELP! > >Date: Tue, Jun 4, 2002, 5:55 PM > > > > > Kim, > > > > When I ask Penina why she is flapping her hands, she'll answer " I'm just so > > excited! " She knows, but she > > doesn't stop it! > > > > :-) > > > > Anne > > > > > > Kim Lauger wrote: > > > >> Just a thought on the hand flapping. > >> > >> So often this is seen as a negative behavior that must be extinguished > >> (mainly because teachers or some other authority person doesn't like it - it > >> doesn't look normal). > >> > >> Dr. van Dijk suggests that instead of stimming, indicating lack of interest > >> or refusing to participate in an activity, this can often be how our > >> children process information they have just received. It can be a way of > >> saying I have taken in enough information for now, and now I need a chance > >> for my brain to understand it. > >> > >> I believe this is true for Dylan. mentioned in CA that a teacher did > >> not like Kendra waving her hands, so now Kendra makes a loud blowing noise > >> when she has had enough input. > >> > >> If our kids need time to process they will find a way, no matter what > >> behavior we " extinguish " . We can only hope that the new behavior is less > >> offensive than the first, but I wouldn't count on it. > >> > >> Kim > >> Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy > >> > >> ---------- > >> > > >> >To: CHARGE > >> >Subject: Re: HELP! > >> >Date: Thu, May 30, 2002, 7:00 PM > >> > > >> > >> > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her > >> > hands though and can't sit still when she is excited or wants to tell a > >> > story (sigh). Her teacher has taught her to put her hands in her lap, and > >> > that has helped a bit! > >> > > >> > Regards, > >> > > >> > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion > >> > kindergarten in 3 weeks!) > >> > > >> > > >> > Graeme & Weir wrote: > >> > > >> >> Traci, > >> >> I think there are a fair number of children with CHARGE who have Cochlear > >> > Implants. From what I hear, the anatomies seem to be different when the > >> > docs get inside and the surgery ends up taking longer as things need to get > >> > re-routed in a different manner sometimes. I know a child with CHARGE > >> > personally who has a C.I. and she is definitely benefitting from it. It's > >> > an intensely difficult personal decision and I wish you the best of luck in > >> > making it. > >> >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in > >> > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT > >> > reminding or putting her hands down or especially getting her doing > >> > something else, busy beads, play dough, keys, whatever we could give her to > >> > distract her to something else. Now, we are finding it is the thumb > >> > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the > >> > point of it just breaking off at the ends. The only solution for that has > >> > been hair up in pig tails every day, then she only twirls her bangs, which > >> > are short and can't knot up as badly. > >> >> > >> >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good > >> > luck, it is very difficult to deal with any kind of self abusing behaviour. > >> >> ~ Weir > >> >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme > >> >> New Brunswick, Canada > >> >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir > >> >> ICQ# 1426476 > >> >> > >> >> HELP! > >> >> > >> >> Hi Everyone, > >> >> I have not been on in a while. My name is and my daughter > >> >> is Eileen Valentine and we used to live in Knoxville, TN and we now > >> >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does > >> >> anyone have a problem with their child pulling their hair out. > >> >> Eileen now has a blad spot on the top of her head because of this and > >> >> I don't know what to do. I also am wondering does any of the CHARGE > >> >> kids have a coclear implant? Eileen is profound in both ears and > >> >> gets no benefit from aids so I thought about it but I am just not > >> >> sure. I think there are a lot of people out there that want her to > >> >> get and they want to use her as a guinny pig. Are there any families > >> >> in the Sacramento area with Charge kids? I would really like to meet > >> >> other families with our beautiful children. If there is anyone out > >> >> there that can give me advise I sure could use it before she has no > >> >> hair left! If there is anyone here that needs a tupperware > >> >> consultant you can visit my website at > >> >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I > >> >> could spend and take care of my family. Thank you for any advise you > >> >> can give me. > >> >> > >> >> Membership of this email support groups does not constitute membership > >> > in the CHARGE Syndrome Foundation. > >> >> For information about the CHARGE Syndrome > >> >> Foundation or to become a member (and get the newsletter) > >> >> please contact marion@... or visit > >> >> the CHARGE Syndrome Foundation web page > >> >> at http://www.chargesyndrome.org > >> >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > >> >> July 25-27, 2003. Information will be available at our website > >> >> www.chargesyndrome.org or by calling 1-. > >> >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Kim, I am grateful for so many things - one of Penina's strongest skills is that she can express herself so effectively (and she has a good bullshit detector). I sometimes think that she is 40 years old! She was diagnosed with CHARGE at about 5 days old. Within a week or two we had tremendous support in place. They trained us, and Penina was stimulated - both her vision and hearing were involved - from the beginning. Fortunately she loved it and didn't rebel. I would hold my 10 day old on my lap and read and read and make her touch the soft bunny, etc. I am now reading to her (a chapter a night) " The Secret Garden " and she is enchanted. Just in time for our (very late) spring... But even if Penina wouldn't have been able to understand language, I think that she would have benefited from the voice and touch (she wasn't too tactile defensive but she also had early sensory integration therapy!)... Best regards, Anne, mom of Penina (CHArgE, 5 3/4 years old) Montreal, just before Grand Prix weekend Kim Lauger wrote: > How wonderful that she can tell you. Kim > > ---------- > > > >To: CHARGE > >Subject: Re: HELP! > >Date: Tue, Jun 4, 2002, 5:55 PM > > > > > Kim, > > > > When I ask Penina why she is flapping her hands, she'll answer " I'm just so > > excited! " She knows, but she > > doesn't stop it! > > > > :-) > > > > Anne > > > > > > Kim Lauger wrote: > > > >> Just a thought on the hand flapping. > >> > >> So often this is seen as a negative behavior that must be extinguished > >> (mainly because teachers or some other authority person doesn't like it - it > >> doesn't look normal). > >> > >> Dr. van Dijk suggests that instead of stimming, indicating lack of interest > >> or refusing to participate in an activity, this can often be how our > >> children process information they have just received. It can be a way of > >> saying I have taken in enough information for now, and now I need a chance > >> for my brain to understand it. > >> > >> I believe this is true for Dylan. mentioned in CA that a teacher did > >> not like Kendra waving her hands, so now Kendra makes a loud blowing noise > >> when she has had enough input. > >> > >> If our kids need time to process they will find a way, no matter what > >> behavior we " extinguish " . We can only hope that the new behavior is less > >> offensive than the first, but I wouldn't count on it. > >> > >> Kim > >> Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy > >> > >> ---------- > >> > > >> >To: CHARGE > >> >Subject: Re: HELP! > >> >Date: Thu, May 30, 2002, 7:00 PM > >> > > >> > >> > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her > >> > hands though and can't sit still when she is excited or wants to tell a > >> > story (sigh). Her teacher has taught her to put her hands in her lap, and > >> > that has helped a bit! > >> > > >> > Regards, > >> > > >> > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion > >> > kindergarten in 3 weeks!) > >> > > >> > > >> > Graeme & Weir wrote: > >> > > >> >> Traci, > >> >> I think there are a fair number of children with CHARGE who have Cochlear > >> > Implants. From what I hear, the anatomies seem to be different when the > >> > docs get inside and the surgery ends up taking longer as things need to get > >> > re-routed in a different manner sometimes. I know a child with CHARGE > >> > personally who has a C.I. and she is definitely benefitting from it. It's > >> > an intensely difficult personal decision and I wish you the best of luck in > >> > making it. > >> >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in > >> > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT > >> > reminding or putting her hands down or especially getting her doing > >> > something else, busy beads, play dough, keys, whatever we could give her to > >> > distract her to something else. Now, we are finding it is the thumb > >> > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the > >> > point of it just breaking off at the ends. The only solution for that has > >> > been hair up in pig tails every day, then she only twirls her bangs, which > >> > are short and can't knot up as badly. > >> >> > >> >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good > >> > luck, it is very difficult to deal with any kind of self abusing behaviour. > >> >> ~ Weir > >> >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme > >> >> New Brunswick, Canada > >> >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir > >> >> ICQ# 1426476 > >> >> > >> >> HELP! > >> >> > >> >> Hi Everyone, > >> >> I have not been on in a while. My name is and my daughter > >> >> is Eileen Valentine and we used to live in Knoxville, TN and we now > >> >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does > >> >> anyone have a problem with their child pulling their hair out. > >> >> Eileen now has a blad spot on the top of her head because of this and > >> >> I don't know what to do. I also am wondering does any of the CHARGE > >> >> kids have a coclear implant? Eileen is profound in both ears and > >> >> gets no benefit from aids so I thought about it but I am just not > >> >> sure. I think there are a lot of people out there that want her to > >> >> get and they want to use her as a guinny pig. Are there any families > >> >> in the Sacramento area with Charge kids? I would really like to meet > >> >> other families with our beautiful children. If there is anyone out > >> >> there that can give me advise I sure could use it before she has no > >> >> hair left! If there is anyone here that needs a tupperware > >> >> consultant you can visit my website at > >> >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I > >> >> could spend and take care of my family. Thank you for any advise you > >> >> can give me. > >> >> > >> >> Membership of this email support groups does not constitute membership > >> > in the CHARGE Syndrome Foundation. > >> >> For information about the CHARGE Syndrome > >> >> Foundation or to become a member (and get the newsletter) > >> >> please contact marion@... or visit > >> >> the CHARGE Syndrome Foundation web page > >> >> at http://www.chargesyndrome.org > >> >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > >> >> July 25-27, 2003. Information will be available at our website > >> >> www.chargesyndrome.org or by calling 1-. > >> >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Kim, I am grateful for so many things - one of Penina's strongest skills is that she can express herself so effectively (and she has a good bullshit detector). I sometimes think that she is 40 years old! She was diagnosed with CHARGE at about 5 days old. Within a week or two we had tremendous support in place. They trained us, and Penina was stimulated - both her vision and hearing were involved - from the beginning. Fortunately she loved it and didn't rebel. I would hold my 10 day old on my lap and read and read and make her touch the soft bunny, etc. I am now reading to her (a chapter a night) " The Secret Garden " and she is enchanted. Just in time for our (very late) spring... But even if Penina wouldn't have been able to understand language, I think that she would have benefited from the voice and touch (she wasn't too tactile defensive but she also had early sensory integration therapy!)... Best regards, Anne, mom of Penina (CHArgE, 5 3/4 years old) Montreal, just before Grand Prix weekend Kim Lauger wrote: > How wonderful that she can tell you. Kim > > ---------- > > > >To: CHARGE > >Subject: Re: HELP! > >Date: Tue, Jun 4, 2002, 5:55 PM > > > > > Kim, > > > > When I ask Penina why she is flapping her hands, she'll answer " I'm just so > > excited! " She knows, but she > > doesn't stop it! > > > > :-) > > > > Anne > > > > > > Kim Lauger wrote: > > > >> Just a thought on the hand flapping. > >> > >> So often this is seen as a negative behavior that must be extinguished > >> (mainly because teachers or some other authority person doesn't like it - it > >> doesn't look normal). > >> > >> Dr. van Dijk suggests that instead of stimming, indicating lack of interest > >> or refusing to participate in an activity, this can often be how our > >> children process information they have just received. It can be a way of > >> saying I have taken in enough information for now, and now I need a chance > >> for my brain to understand it. > >> > >> I believe this is true for Dylan. mentioned in CA that a teacher did > >> not like Kendra waving her hands, so now Kendra makes a loud blowing noise > >> when she has had enough input. > >> > >> If our kids need time to process they will find a way, no matter what > >> behavior we " extinguish " . We can only hope that the new behavior is less > >> offensive than the first, but I wouldn't count on it. > >> > >> Kim > >> Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy > >> > >> ---------- > >> > > >> >To: CHARGE > >> >Subject: Re: HELP! > >> >Date: Thu, May 30, 2002, 7:00 PM > >> > > >> > >> > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her > >> > hands though and can't sit still when she is excited or wants to tell a > >> > story (sigh). Her teacher has taught her to put her hands in her lap, and > >> > that has helped a bit! > >> > > >> > Regards, > >> > > >> > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion > >> > kindergarten in 3 weeks!) > >> > > >> > > >> > Graeme & Weir wrote: > >> > > >> >> Traci, > >> >> I think there are a fair number of children with CHARGE who have Cochlear > >> > Implants. From what I hear, the anatomies seem to be different when the > >> > docs get inside and the surgery ends up taking longer as things need to get > >> > re-routed in a different manner sometimes. I know a child with CHARGE > >> > personally who has a C.I. and she is definitely benefitting from it. It's > >> > an intensely difficult personal decision and I wish you the best of luck in > >> > making it. > >> >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in > >> > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT > >> > reminding or putting her hands down or especially getting her doing > >> > something else, busy beads, play dough, keys, whatever we could give her to > >> > distract her to something else. Now, we are finding it is the thumb > >> > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the > >> > point of it just breaking off at the ends. The only solution for that has > >> > been hair up in pig tails every day, then she only twirls her bangs, which > >> > are short and can't knot up as badly. > >> >> > >> >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good > >> > luck, it is very difficult to deal with any kind of self abusing behaviour. > >> >> ~ Weir > >> >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme > >> >> New Brunswick, Canada > >> >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir > >> >> ICQ# 1426476 > >> >> > >> >> HELP! > >> >> > >> >> Hi Everyone, > >> >> I have not been on in a while. My name is and my daughter > >> >> is Eileen Valentine and we used to live in Knoxville, TN and we now > >> >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does > >> >> anyone have a problem with their child pulling their hair out. > >> >> Eileen now has a blad spot on the top of her head because of this and > >> >> I don't know what to do. I also am wondering does any of the CHARGE > >> >> kids have a coclear implant? Eileen is profound in both ears and > >> >> gets no benefit from aids so I thought about it but I am just not > >> >> sure. I think there are a lot of people out there that want her to > >> >> get and they want to use her as a guinny pig. Are there any families > >> >> in the Sacramento area with Charge kids? I would really like to meet > >> >> other families with our beautiful children. If there is anyone out > >> >> there that can give me advise I sure could use it before she has no > >> >> hair left! If there is anyone here that needs a tupperware > >> >> consultant you can visit my website at > >> >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I > >> >> could spend and take care of my family. Thank you for any advise you > >> >> can give me. > >> >> > >> >> Membership of this email support groups does not constitute membership > >> > in the CHARGE Syndrome Foundation. > >> >> For information about the CHARGE Syndrome > >> >> Foundation or to become a member (and get the newsletter) > >> >> please contact marion@... or visit > >> >> the CHARGE Syndrome Foundation web page > >> >> at http://www.chargesyndrome.org > >> >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > >> >> July 25-27, 2003. Information will be available at our website > >> >> www.chargesyndrome.org or by calling 1-. > >> >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Yes, Penina has always done well. I remember from the conferences and you have always done well with her. A lot of time and dedication and love you have given her. It is a puzzle for those of us with CHARGERs who do not respond to all the interventions, voice, therapies, touch, love etc... in the same fashion or those who responded at first and now don't. I guess that's where the questions about autism in addition to CHARGE or sensory vision loss in addition to structural vision loss etc. come in to play. Perhaps some day we will know more and in the meantime we just love them all to pieces no matter their abilities. Kim ---------- > >To: CHARGE >Subject: Re: HELP! >Date: Tue, Jun 4, 2002, 6:49 PM > > Kim, > > I am grateful for so many things - one of Penina's strongest skills is that > she can express herself so > effectively (and she has a good bullshit detector). I sometimes think that > she is 40 years old! > > She was diagnosed with CHARGE at about 5 days old. Within a week or two we > had tremendous support in place. > They trained us, and Penina was stimulated - both her vision and hearing > were involved - from the beginning. > Fortunately she loved it and didn't rebel. I would hold my 10 day old on my > lap and read and read and make > her touch the soft bunny, etc. > > I am now reading to her (a chapter a night) " The Secret Garden " and she is > enchanted. Just in time for our > (very late) spring... > > But even if Penina wouldn't have been able to understand language, I think > that she would have benefited > from the voice and touch (she wasn't too tactile defensive but she also had > early sensory integration > therapy!)... > > Best regards, > > Anne, mom of Penina (CHArgE, 5 3/4 years old) > Montreal, just before Grand Prix weekend > > > Kim Lauger wrote: > >> How wonderful that she can tell you. Kim >> >> ---------- >> > >> >To: CHARGE >> >Subject: Re: HELP! >> >Date: Tue, Jun 4, 2002, 5:55 PM >> > >> >> > Kim, >> > >> > When I ask Penina why she is flapping her hands, she'll answer " I'm just so >> > excited! " She knows, but she >> > doesn't stop it! >> > >> > :-) >> > >> > Anne >> > >> > >> > Kim Lauger wrote: >> > >> >> Just a thought on the hand flapping. >> >> >> >> So often this is seen as a negative behavior that must be extinguished >> >> (mainly because teachers or some other authority person doesn't like it - it >> >> doesn't look normal). >> >> >> >> Dr. van Dijk suggests that instead of stimming, indicating lack of interest >> >> or refusing to participate in an activity, this can often be how our >> >> children process information they have just received. It can be a way of >> >> saying I have taken in enough information for now, and now I need a chance >> >> for my brain to understand it. >> >> >> >> I believe this is true for Dylan. mentioned in CA that a teacher did >> >> not like Kendra waving her hands, so now Kendra makes a loud blowing noise >> >> when she has had enough input. >> >> >> >> If our kids need time to process they will find a way, no matter what >> >> behavior we " extinguish " . We can only hope that the new behavior is less >> >> offensive than the first, but I wouldn't count on it. >> >> >> >> Kim >> >> Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy >> >> >> >> ---------- >> >> > >> >> >To: CHARGE >> >> >Subject: Re: HELP! >> >> >Date: Thu, May 30, 2002, 7:00 PM >> >> > >> >> >> >> > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her >> >> > hands though and can't sit still when she is excited or wants to tell a >> >> > story (sigh). Her teacher has taught her to put her hands in her lap, and >> >> > that has helped a bit! >> >> > >> >> > Regards, >> >> > >> >> > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion >> >> > kindergarten in 3 weeks!) >> >> > >> >> > >> >> > Graeme & Weir wrote: >> >> > >> >> >> Traci, >> >> >> I think there are a fair number of children with CHARGE who have Cochlear >> >> > Implants. From what I hear, the anatomies seem to be different when the >> >> > docs get inside and the surgery ends up taking longer as things need to get >> >> > re-routed in a different manner sometimes. I know a child with CHARGE >> >> > personally who has a C.I. and she is definitely benefitting from it. It's >> >> > an intensely difficult personal decision and I wish you the best of luck in >> >> > making it. >> >> >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in >> >> > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT >> >> > reminding or putting her hands down or especially getting her doing >> >> > something else, busy beads, play dough, keys, whatever we could give her to >> >> > distract her to something else. Now, we are finding it is the thumb >> >> > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the >> >> > point of it just breaking off at the ends. The only solution for that has >> >> > been hair up in pig tails every day, then she only twirls her bangs, which >> >> > are short and can't knot up as badly. >> >> >> >> >> >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good >> >> > luck, it is very difficult to deal with any kind of self abusing behaviour. >> >> >> ~ Weir >> >> >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme >> >> >> New Brunswick, Canada >> >> >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir >> >> >> ICQ# 1426476 >> >> >> >> >> >> HELP! >> >> >> >> >> >> Hi Everyone, >> >> >> I have not been on in a while. My name is and my daughter >> >> >> is Eileen Valentine and we used to live in Knoxville, TN and we now >> >> >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does >> >> >> anyone have a problem with their child pulling their hair out. >> >> >> Eileen now has a blad spot on the top of her head because of this and >> >> >> I don't know what to do. I also am wondering does any of the CHARGE >> >> >> kids have a coclear implant? Eileen is profound in both ears and >> >> >> gets no benefit from aids so I thought about it but I am just not >> >> >> sure. I think there are a lot of people out there that want her to >> >> >> get and they want to use her as a guinny pig. Are there any families >> >> >> in the Sacramento area with Charge kids? I would really like to meet >> >> >> other families with our beautiful children. If there is anyone out >> >> >> there that can give me advise I sure could use it before she has no >> >> >> hair left! If there is anyone here that needs a tupperware >> >> >> consultant you can visit my website at >> >> >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I >> >> >> could spend and take care of my family. Thank you for any advise you >> >> >> can give me. >> >> >> >> >> >> Membership of this email support groups does not constitute membership >> >> > in the CHARGE Syndrome Foundation. >> >> >> For information about the CHARGE Syndrome >> >> >> Foundation or to become a member (and get the newsletter) >> >> >> please contact marion@... or visit >> >> >> the CHARGE Syndrome Foundation web page >> >> >> at http://www.chargesyndrome.org >> >> >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, >> >> >> July 25-27, 2003. Information will be available at our website >> >> >> www.chargesyndrome.org or by calling 1-. >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Yes, Penina has always done well. I remember from the conferences and you have always done well with her. A lot of time and dedication and love you have given her. It is a puzzle for those of us with CHARGERs who do not respond to all the interventions, voice, therapies, touch, love etc... in the same fashion or those who responded at first and now don't. I guess that's where the questions about autism in addition to CHARGE or sensory vision loss in addition to structural vision loss etc. come in to play. Perhaps some day we will know more and in the meantime we just love them all to pieces no matter their abilities. Kim ---------- > >To: CHARGE >Subject: Re: HELP! >Date: Tue, Jun 4, 2002, 6:49 PM > > Kim, > > I am grateful for so many things - one of Penina's strongest skills is that > she can express herself so > effectively (and she has a good bullshit detector). I sometimes think that > she is 40 years old! > > She was diagnosed with CHARGE at about 5 days old. Within a week or two we > had tremendous support in place. > They trained us, and Penina was stimulated - both her vision and hearing > were involved - from the beginning. > Fortunately she loved it and didn't rebel. I would hold my 10 day old on my > lap and read and read and make > her touch the soft bunny, etc. > > I am now reading to her (a chapter a night) " The Secret Garden " and she is > enchanted. Just in time for our > (very late) spring... > > But even if Penina wouldn't have been able to understand language, I think > that she would have benefited > from the voice and touch (she wasn't too tactile defensive but she also had > early sensory integration > therapy!)... > > Best regards, > > Anne, mom of Penina (CHArgE, 5 3/4 years old) > Montreal, just before Grand Prix weekend > > > Kim Lauger wrote: > >> How wonderful that she can tell you. Kim >> >> ---------- >> > >> >To: CHARGE >> >Subject: Re: HELP! >> >Date: Tue, Jun 4, 2002, 5:55 PM >> > >> >> > Kim, >> > >> > When I ask Penina why she is flapping her hands, she'll answer " I'm just so >> > excited! " She knows, but she >> > doesn't stop it! >> > >> > :-) >> > >> > Anne >> > >> > >> > Kim Lauger wrote: >> > >> >> Just a thought on the hand flapping. >> >> >> >> So often this is seen as a negative behavior that must be extinguished >> >> (mainly because teachers or some other authority person doesn't like it - it >> >> doesn't look normal). >> >> >> >> Dr. van Dijk suggests that instead of stimming, indicating lack of interest >> >> or refusing to participate in an activity, this can often be how our >> >> children process information they have just received. It can be a way of >> >> saying I have taken in enough information for now, and now I need a chance >> >> for my brain to understand it. >> >> >> >> I believe this is true for Dylan. mentioned in CA that a teacher did >> >> not like Kendra waving her hands, so now Kendra makes a loud blowing noise >> >> when she has had enough input. >> >> >> >> If our kids need time to process they will find a way, no matter what >> >> behavior we " extinguish " . We can only hope that the new behavior is less >> >> offensive than the first, but I wouldn't count on it. >> >> >> >> Kim >> >> Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy >> >> >> >> ---------- >> >> > >> >> >To: CHARGE >> >> >Subject: Re: HELP! >> >> >Date: Thu, May 30, 2002, 7:00 PM >> >> > >> >> >> >> > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her >> >> > hands though and can't sit still when she is excited or wants to tell a >> >> > story (sigh). Her teacher has taught her to put her hands in her lap, and >> >> > that has helped a bit! >> >> > >> >> > Regards, >> >> > >> >> > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion >> >> > kindergarten in 3 weeks!) >> >> > >> >> > >> >> > Graeme & Weir wrote: >> >> > >> >> >> Traci, >> >> >> I think there are a fair number of children with CHARGE who have Cochlear >> >> > Implants. From what I hear, the anatomies seem to be different when the >> >> > docs get inside and the surgery ends up taking longer as things need to get >> >> > re-routed in a different manner sometimes. I know a child with CHARGE >> >> > personally who has a C.I. and she is definitely benefitting from it. It's >> >> > an intensely difficult personal decision and I wish you the best of luck in >> >> > making it. >> >> >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in >> >> > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT >> >> > reminding or putting her hands down or especially getting her doing >> >> > something else, busy beads, play dough, keys, whatever we could give her to >> >> > distract her to something else. Now, we are finding it is the thumb >> >> > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the >> >> > point of it just breaking off at the ends. The only solution for that has >> >> > been hair up in pig tails every day, then she only twirls her bangs, which >> >> > are short and can't knot up as badly. >> >> >> >> >> >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good >> >> > luck, it is very difficult to deal with any kind of self abusing behaviour. >> >> >> ~ Weir >> >> >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme >> >> >> New Brunswick, Canada >> >> >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir >> >> >> ICQ# 1426476 >> >> >> >> >> >> HELP! >> >> >> >> >> >> Hi Everyone, >> >> >> I have not been on in a while. My name is and my daughter >> >> >> is Eileen Valentine and we used to live in Knoxville, TN and we now >> >> >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does >> >> >> anyone have a problem with their child pulling their hair out. >> >> >> Eileen now has a blad spot on the top of her head because of this and >> >> >> I don't know what to do. I also am wondering does any of the CHARGE >> >> >> kids have a coclear implant? Eileen is profound in both ears and >> >> >> gets no benefit from aids so I thought about it but I am just not >> >> >> sure. I think there are a lot of people out there that want her to >> >> >> get and they want to use her as a guinny pig. Are there any families >> >> >> in the Sacramento area with Charge kids? I would really like to meet >> >> >> other families with our beautiful children. If there is anyone out >> >> >> there that can give me advise I sure could use it before she has no >> >> >> hair left! If there is anyone here that needs a tupperware >> >> >> consultant you can visit my website at >> >> >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I >> >> >> could spend and take care of my family. Thank you for any advise you >> >> >> can give me. >> >> >> >> >> >> Membership of this email support groups does not constitute membership >> >> > in the CHARGE Syndrome Foundation. >> >> >> For information about the CHARGE Syndrome >> >> >> Foundation or to become a member (and get the newsletter) >> >> >> please contact marion@... or visit >> >> >> the CHARGE Syndrome Foundation web page >> >> >> at http://www.chargesyndrome.org >> >> >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, >> >> >> July 25-27, 2003. Information will be available at our website >> >> >> www.chargesyndrome.org or by calling 1-. >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Yes, Penina has always done well. I remember from the conferences and you have always done well with her. A lot of time and dedication and love you have given her. It is a puzzle for those of us with CHARGERs who do not respond to all the interventions, voice, therapies, touch, love etc... in the same fashion or those who responded at first and now don't. I guess that's where the questions about autism in addition to CHARGE or sensory vision loss in addition to structural vision loss etc. come in to play. Perhaps some day we will know more and in the meantime we just love them all to pieces no matter their abilities. Kim ---------- > >To: CHARGE >Subject: Re: HELP! >Date: Tue, Jun 4, 2002, 6:49 PM > > Kim, > > I am grateful for so many things - one of Penina's strongest skills is that > she can express herself so > effectively (and she has a good bullshit detector). I sometimes think that > she is 40 years old! > > She was diagnosed with CHARGE at about 5 days old. Within a week or two we > had tremendous support in place. > They trained us, and Penina was stimulated - both her vision and hearing > were involved - from the beginning. > Fortunately she loved it and didn't rebel. I would hold my 10 day old on my > lap and read and read and make > her touch the soft bunny, etc. > > I am now reading to her (a chapter a night) " The Secret Garden " and she is > enchanted. Just in time for our > (very late) spring... > > But even if Penina wouldn't have been able to understand language, I think > that she would have benefited > from the voice and touch (she wasn't too tactile defensive but she also had > early sensory integration > therapy!)... > > Best regards, > > Anne, mom of Penina (CHArgE, 5 3/4 years old) > Montreal, just before Grand Prix weekend > > > Kim Lauger wrote: > >> How wonderful that she can tell you. Kim >> >> ---------- >> > >> >To: CHARGE >> >Subject: Re: HELP! >> >Date: Tue, Jun 4, 2002, 5:55 PM >> > >> >> > Kim, >> > >> > When I ask Penina why she is flapping her hands, she'll answer " I'm just so >> > excited! " She knows, but she >> > doesn't stop it! >> > >> > :-) >> > >> > Anne >> > >> > >> > Kim Lauger wrote: >> > >> >> Just a thought on the hand flapping. >> >> >> >> So often this is seen as a negative behavior that must be extinguished >> >> (mainly because teachers or some other authority person doesn't like it - it >> >> doesn't look normal). >> >> >> >> Dr. van Dijk suggests that instead of stimming, indicating lack of interest >> >> or refusing to participate in an activity, this can often be how our >> >> children process information they have just received. It can be a way of >> >> saying I have taken in enough information for now, and now I need a chance >> >> for my brain to understand it. >> >> >> >> I believe this is true for Dylan. mentioned in CA that a teacher did >> >> not like Kendra waving her hands, so now Kendra makes a loud blowing noise >> >> when she has had enough input. >> >> >> >> If our kids need time to process they will find a way, no matter what >> >> behavior we " extinguish " . We can only hope that the new behavior is less >> >> offensive than the first, but I wouldn't count on it. >> >> >> >> Kim >> >> Mother to Dylan 6, Kayla 11, Tyler 14, wife to Roy >> >> >> >> ---------- >> >> > >> >> >To: CHARGE >> >> >Subject: Re: HELP! >> >> >Date: Thu, May 30, 2002, 7:00 PM >> >> > >> >> >> >> > Ah yes, the hair twirling. Eventually Penina stopped. She still flaps her >> >> > hands though and can't sit still when she is excited or wants to tell a >> >> > story (sigh). Her teacher has taught her to put her hands in her lap, and >> >> > that has helped a bit! >> >> > >> >> > Regards, >> >> > >> >> > Anne, mom of Penina (CHArgE 5 3/4, graduating from French immersion >> >> > kindergarten in 3 weeks!) >> >> > >> >> > >> >> > Graeme & Weir wrote: >> >> > >> >> >> Traci, >> >> >> I think there are a fair number of children with CHARGE who have Cochlear >> >> > Implants. From what I hear, the anatomies seem to be different when the >> >> > docs get inside and the surgery ends up taking longer as things need to get >> >> > re-routed in a different manner sometimes. I know a child with CHARGE >> >> > personally who has a C.I. and she is definitely benefitting from it. It's >> >> > an intensely difficult personal decision and I wish you the best of luck in >> >> > making it. >> >> >> Re: the hair pulling...our Kennedy used to do this quite a bit, and in >> >> > the " clumps " fashion at one point. The ONLY thing that worked was CONSTANT >> >> > reminding or putting her hands down or especially getting her doing >> >> > something else, busy beads, play dough, keys, whatever we could give her to >> >> > distract her to something else. Now, we are finding it is the thumb >> >> > sucking and twirling of her hair that is making it KNOT KNOT KNOT up to the >> >> > point of it just breaking off at the ends. The only solution for that has >> >> > been hair up in pig tails every day, then she only twirls her bangs, which >> >> > are short and can't knot up as badly. >> >> >> >> >> >> So I guess my best advice is :DISTRACT DISTRACT DISTRACT!!! And good >> >> > luck, it is very difficult to deal with any kind of self abusing behaviour. >> >> >> ~ Weir >> >> >> Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme >> >> >> New Brunswick, Canada >> >> >> Visit the Weir Website: http://personal.nbnet.nb.ca/gweir >> >> >> ICQ# 1426476 >> >> >> >> >> >> HELP! >> >> >> >> >> >> Hi Everyone, >> >> >> I have not been on in a while. My name is and my daughter >> >> >> is Eileen Valentine and we used to live in Knoxville, TN and we now >> >> >> live in Citrus Heights,CA. Eileen will be 2 years old June 18. Does >> >> >> anyone have a problem with their child pulling their hair out. >> >> >> Eileen now has a blad spot on the top of her head because of this and >> >> >> I don't know what to do. I also am wondering does any of the CHARGE >> >> >> kids have a coclear implant? Eileen is profound in both ears and >> >> >> gets no benefit from aids so I thought about it but I am just not >> >> >> sure. I think there are a lot of people out there that want her to >> >> >> get and they want to use her as a guinny pig. Are there any families >> >> >> in the Sacramento area with Charge kids? I would really like to meet >> >> >> other families with our beautiful children. If there is anyone out >> >> >> there that can give me advise I sure could use it before she has no >> >> >> hair left! If there is anyone here that needs a tupperware >> >> >> consultant you can visit my website at >> >> >> www.my.tupperware.com/tracyvalentine , this has let me stay home so I >> >> >> could spend and take care of my family. Thank you for any advise you >> >> >> can give me. >> >> >> >> >> >> Membership of this email support groups does not constitute membership >> >> > in the CHARGE Syndrome Foundation. >> >> >> For information about the CHARGE Syndrome >> >> >> Foundation or to become a member (and get the newsletter) >> >> >> please contact marion@... or visit >> >> >> the CHARGE Syndrome Foundation web page >> >> >> at http://www.chargesyndrome.org >> >> >> 6th International CHARGE Syndrome Conference, Cleveland, Ohio, >> >> >> July 25-27, 2003. Information will be available at our website >> >> >> www.chargesyndrome.org or by calling 1-. >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Kim, How right you are about loving our children. Wouldn't it be amazing if we could quantify how much love there is in our CHARGE community? For our children, grandchildren and from the older ones with CHARGE who share their experiences reaching out to each other, not just to take comfort but also to give it, talking about whatever works and venting frustrations we can all relate to in various forms.... All of us have put in time and dedication and love to our families and the extended CHARGE family. What a special place this is. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Sorry, I thought I specified that I need a personal injury/mva attorney. "Absence is to love what wind is to fire; it extinguishes the small, it enkindles the great"-Comte DeBussy-Rasputin Quote Link to comment Share on other sites More sharing options...
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