Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Sue, Some helpful information might be through the CHARGE Foundation web page. Go to http://www.chargesyndrome.org/resources.asp And once there click on the blue heading below the American Journal of Medical Genetics Articles. The blue is titled View American Journal of Medical Genetics Articles. The articles within that are about behaviors. Of course they are all wonderful, absolutely wonderful, but the ones that will be important to your question would be Tim Hartshorne, Hartshorne, Brown, Jan P.M. van Dijk, and Laurie Denno's Articles. Yea, like you have tons of time to read them. I have recently really used Laurie and Bernstein's article to get it all in my brain wrapped around it the way it should be. There are so many different treatment options. It's important to know that Laurie has had much experience with children who have CHARGE being at the Perkins school. TONS! While I am talking of the Journal Articles I also have to add that one of the parents here on this list who has been vital to all of us by sharing her wealth of information has a part in the article as well. It's our own Kim! So parents, if you have the time you should really read them. It helps more than just us talking to each other! The experts are out there and they have taken the time to do the research and the reports. We all need to take the time to read them. Just in case I have Brown's last paragraph saved for all eternity. He states: " There has been a long-standing debate about CHARGE behavior amongst families and professionals, and now a more decisive focus on behavior is emerging in several countries. I would want to remind people of the immense difficulties that children with CHARGE face in almost everything that they do, and, as a consequence, of the very high levels of stress with which they must live for much or even all of their lives. Time spent trying to reduce stress levels, and trying to give the children acceptable strategies for doing this for themselves, must be one of the most precious gifts we can offer them, and one of the biggest favors we can do ourselves as family members, educators, and therapists. " Read the articles, you'll just love them all! Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 hi it could be a sign of pain or distress hugs ellen > > Hi to anyone out there who remembers me(especially Elaine in Scotland.) > I am Sue, grandma to (10 yrs) who has charge. > > is profoundly deaf, partially sighted and still completely tube > fed. Most of the time she is happy and has finally started using sign > (especially signs of her favourite occupations - swimming, baking etc.) > > However some times she becomes really agitated and starts thumping her > forehead with her fist and also quite violently pinching her head just > above the bridge of her nose. We think it may just be a sign of > frustration, as we also get hit and kicked sometimes. > > Does anyone else have any experience of this ? > > Thanks > Sue > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 hi it could be a sign of pain or distress hugs ellen > > Hi to anyone out there who remembers me(especially Elaine in Scotland.) > I am Sue, grandma to (10 yrs) who has charge. > > is profoundly deaf, partially sighted and still completely tube > fed. Most of the time she is happy and has finally started using sign > (especially signs of her favourite occupations - swimming, baking etc.) > > However some times she becomes really agitated and starts thumping her > forehead with her fist and also quite violently pinching her head just > above the bridge of her nose. We think it may just be a sign of > frustration, as we also get hit and kicked sometimes. > > Does anyone else have any experience of this ? > > Thanks > Sue > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Thanks Ellen. Sally has suggested it may be sinus pain as apparently Charge children are prone to sinus problems, and for sure we will check this out. Sue -- In CHARGE , " ellen howe " wrote: > > hi it could be a sign of pain or distress hugs ellen > > > > > > Hi to anyone out there who remembers me(especially Elaine in Scotland.) > > I am Sue, grandma to (10 yrs) who has charge. > > > > is profoundly deaf, partially sighted and still completely tube > > fed. Most of the time she is happy and has finally started using sign > > (especially signs of her favourite occupations - swimming, baking etc.) > > > > However some times she becomes really agitated and starts thumping her > > forehead with her fist and also quite violently pinching her head just > > above the bridge of her nose. We think it may just be a sign of > > frustration, as we also get hit and kicked sometimes. > > > > Does anyone else have any experience of this ? > > > > Thanks > > Sue > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support groups does not constitute membership in > > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Thanks Ellen. Sally has suggested it may be sinus pain as apparently Charge children are prone to sinus problems, and for sure we will check this out. Sue -- In CHARGE , " ellen howe " wrote: > > hi it could be a sign of pain or distress hugs ellen > > > > > > Hi to anyone out there who remembers me(especially Elaine in Scotland.) > > I am Sue, grandma to (10 yrs) who has charge. > > > > is profoundly deaf, partially sighted and still completely tube > > fed. Most of the time she is happy and has finally started using sign > > (especially signs of her favourite occupations - swimming, baking etc.) > > > > However some times she becomes really agitated and starts thumping her > > forehead with her fist and also quite violently pinching her head just > > above the bridge of her nose. We think it may just be a sign of > > frustration, as we also get hit and kicked sometimes. > > > > Does anyone else have any experience of this ? > > > > Thanks > > Sue > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support groups does not constitute membership in > > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Thanks Ellen. Sally has suggested it may be sinus pain as apparently Charge children are prone to sinus problems, and for sure we will check this out. Sue -- In CHARGE , " ellen howe " wrote: > > hi it could be a sign of pain or distress hugs ellen > > > > > > Hi to anyone out there who remembers me(especially Elaine in Scotland.) > > I am Sue, grandma to (10 yrs) who has charge. > > > > is profoundly deaf, partially sighted and still completely tube > > fed. Most of the time she is happy and has finally started using sign > > (especially signs of her favourite occupations - swimming, baking etc.) > > > > However some times she becomes really agitated and starts thumping her > > forehead with her fist and also quite violently pinching her head just > > above the bridge of her nose. We think it may just be a sign of > > frustration, as we also get hit and kicked sometimes. > > > > Does anyone else have any experience of this ? > > > > Thanks > > Sue > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support groups does not constitute membership in > > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Thanks Ellen. Sally has suggested it may be sinus pain as apparently Charge children are prone to sinus problems, and for sure we will check this out. Sue -- In CHARGE , " ellen howe " wrote: > > hi it could be a sign of pain or distress hugs ellen > > > > > > Hi to anyone out there who remembers me(especially Elaine in Scotland.) > > I am Sue, grandma to (10 yrs) who has charge. > > > > is profoundly deaf, partially sighted and still completely tube > > fed. Most of the time she is happy and has finally started using sign > > (especially signs of her favourite occupations - swimming, baking etc.) > > > > However some times she becomes really agitated and starts thumping her > > forehead with her fist and also quite violently pinching her head just > > above the bridge of her nose. We think it may just be a sign of > > frustration, as we also get hit and kicked sometimes. > > > > Does anyone else have any experience of this ? > > > > Thanks > > Sue > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support groups does not constitute membership in > > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Thanks Ellen. Sally has suggested it may be sinus pain as apparently Charge children are prone to sinus problems, and for sure we will check this out. Sue -- In CHARGE , " ellen howe " wrote: > > hi it could be a sign of pain or distress hugs ellen > > > > > > Hi to anyone out there who remembers me(especially Elaine in Scotland.) > > I am Sue, grandma to (10 yrs) who has charge. > > > > is profoundly deaf, partially sighted and still completely tube > > fed. Most of the time she is happy and has finally started using sign > > (especially signs of her favourite occupations - swimming, baking etc.) > > > > However some times she becomes really agitated and starts thumping her > > forehead with her fist and also quite violently pinching her head just > > above the bridge of her nose. We think it may just be a sign of > > frustration, as we also get hit and kicked sometimes. > > > > Does anyone else have any experience of this ? > > > > Thanks > > Sue > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support groups does not constitute membership in > > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Thanks Ellen. Sally has suggested it may be sinus pain as apparently Charge children are prone to sinus problems, and for sure we will check this out. Sue -- In CHARGE , " ellen howe " wrote: > > hi it could be a sign of pain or distress hugs ellen > > > > > > Hi to anyone out there who remembers me(especially Elaine in Scotland.) > > I am Sue, grandma to (10 yrs) who has charge. > > > > is profoundly deaf, partially sighted and still completely tube > > fed. Most of the time she is happy and has finally started using sign > > (especially signs of her favourite occupations - swimming, baking etc.) > > > > However some times she becomes really agitated and starts thumping her > > forehead with her fist and also quite violently pinching her head just > > above the bridge of her nose. We think it may just be a sign of > > frustration, as we also get hit and kicked sometimes. > > > > Does anyone else have any experience of this ? > > > > Thanks > > Sue > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support groups does not constitute membership in > > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Thanks for the info Bonnie - a little light reading then ! My daughter ('s mum) and I went to a 3-day seminar in England on Charge and heard both Brown and Tim Hartshorne speak, both were extremely interesting along with other speakers. Many of the parents wanted to take Brown home with them to help with their Charge children ! It's good to know that experts are out there for us. Take care. Sue -- In CHARGE , Turk22082@... wrote: > > Sue, > > Some helpful information might be through the CHARGE Foundation web page. Go > to http://www.chargesyndrome.org/resources.asp And once there click on the > blue heading below the American Journal of Medical Genetics Articles. The > blue is titled View American Journal of Medical Genetics Articles. > > The articles within that are about behaviors. Of course they are all > wonderful, absolutely wonderful, but the ones that will be important to your question > would be Tim Hartshorne, Hartshorne, Brown, Jan P.M. van Dijk, > and Laurie Denno's Articles. Yea, like you have tons of time to read them. > > I have recently really used Laurie and Bernstein's article to get it > all in my brain wrapped around it the way it should be. There are so many > different treatment options. It's important to know that Laurie has had much > experience with children who have CHARGE being at the Perkins school. TONS! > > While I am talking of the Journal Articles I also have to add that one of the > parents here on this list who has been vital to all of us by sharing her > wealth of information has a part in the article as well. It's our own Kim! > > So parents, if you have the time you should really read them. It helps more > than just us talking to each other! The experts are out there and they have > taken the time to do the research and the reports. We all need to take the > time to read them. > > Just in case I have Brown's last paragraph saved for all eternity. > > He states: > > " There has been a long-standing debate about CHARGE behavior amongst families > and professionals, and now a more decisive focus on behavior is emerging in > several countries. I would want to remind people of the immense difficulties > that children with CHARGE face in almost everything that they do, and, as a > consequence, of the very high levels of stress with which they must live for much > or even all of their lives. Time spent trying to reduce stress levels, and > trying to give the children acceptable strategies for doing this for themselves, > must be one of the most precious gifts we can offer them, and one of the > biggest favors we can do ourselves as family members, educators, and therapists. " > > Read the articles, you'll just love them all! > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Thanks for the info Bonnie - a little light reading then ! My daughter ('s mum) and I went to a 3-day seminar in England on Charge and heard both Brown and Tim Hartshorne speak, both were extremely interesting along with other speakers. Many of the parents wanted to take Brown home with them to help with their Charge children ! It's good to know that experts are out there for us. Take care. Sue -- In CHARGE , Turk22082@... wrote: > > Sue, > > Some helpful information might be through the CHARGE Foundation web page. Go > to http://www.chargesyndrome.org/resources.asp And once there click on the > blue heading below the American Journal of Medical Genetics Articles. The > blue is titled View American Journal of Medical Genetics Articles. > > The articles within that are about behaviors. Of course they are all > wonderful, absolutely wonderful, but the ones that will be important to your question > would be Tim Hartshorne, Hartshorne, Brown, Jan P.M. van Dijk, > and Laurie Denno's Articles. Yea, like you have tons of time to read them. > > I have recently really used Laurie and Bernstein's article to get it > all in my brain wrapped around it the way it should be. There are so many > different treatment options. It's important to know that Laurie has had much > experience with children who have CHARGE being at the Perkins school. TONS! > > While I am talking of the Journal Articles I also have to add that one of the > parents here on this list who has been vital to all of us by sharing her > wealth of information has a part in the article as well. It's our own Kim! > > So parents, if you have the time you should really read them. It helps more > than just us talking to each other! The experts are out there and they have > taken the time to do the research and the reports. We all need to take the > time to read them. > > Just in case I have Brown's last paragraph saved for all eternity. > > He states: > > " There has been a long-standing debate about CHARGE behavior amongst families > and professionals, and now a more decisive focus on behavior is emerging in > several countries. I would want to remind people of the immense difficulties > that children with CHARGE face in almost everything that they do, and, as a > consequence, of the very high levels of stress with which they must live for much > or even all of their lives. Time spent trying to reduce stress levels, and > trying to give the children acceptable strategies for doing this for themselves, > must be one of the most precious gifts we can offer them, and one of the > biggest favors we can do ourselves as family members, educators, and therapists. " > > Read the articles, you'll just love them all! > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Thanks for the info Bonnie - a little light reading then ! My daughter ('s mum) and I went to a 3-day seminar in England on Charge and heard both Brown and Tim Hartshorne speak, both were extremely interesting along with other speakers. Many of the parents wanted to take Brown home with them to help with their Charge children ! It's good to know that experts are out there for us. Take care. Sue -- In CHARGE , Turk22082@... wrote: > > Sue, > > Some helpful information might be through the CHARGE Foundation web page. Go > to http://www.chargesyndrome.org/resources.asp And once there click on the > blue heading below the American Journal of Medical Genetics Articles. The > blue is titled View American Journal of Medical Genetics Articles. > > The articles within that are about behaviors. Of course they are all > wonderful, absolutely wonderful, but the ones that will be important to your question > would be Tim Hartshorne, Hartshorne, Brown, Jan P.M. van Dijk, > and Laurie Denno's Articles. Yea, like you have tons of time to read them. > > I have recently really used Laurie and Bernstein's article to get it > all in my brain wrapped around it the way it should be. There are so many > different treatment options. It's important to know that Laurie has had much > experience with children who have CHARGE being at the Perkins school. TONS! > > While I am talking of the Journal Articles I also have to add that one of the > parents here on this list who has been vital to all of us by sharing her > wealth of information has a part in the article as well. It's our own Kim! > > So parents, if you have the time you should really read them. It helps more > than just us talking to each other! The experts are out there and they have > taken the time to do the research and the reports. We all need to take the > time to read them. > > Just in case I have Brown's last paragraph saved for all eternity. > > He states: > > " There has been a long-standing debate about CHARGE behavior amongst families > and professionals, and now a more decisive focus on behavior is emerging in > several countries. I would want to remind people of the immense difficulties > that children with CHARGE face in almost everything that they do, and, as a > consequence, of the very high levels of stress with which they must live for much > or even all of their lives. Time spent trying to reduce stress levels, and > trying to give the children acceptable strategies for doing this for themselves, > must be one of the most precious gifts we can offer them, and one of the > biggest favors we can do ourselves as family members, educators, and therapists. " > > Read the articles, you'll just love them all! > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Sue- Yes, sinus issues are common. Know also that many kids don't show typical signs and don't get dx'd until they get a CT-scan which often parents have had to fight for. Be sure your dr understands that you *must* rule out any medical reasons for her behavior -- and that may require that he step outside of his box medically. Our local ped is wonderful -- as soon as Aubrie comes in she disregards all the " rules " and looks at her with a fresh perspective. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Sue- Yes, sinus issues are common. Know also that many kids don't show typical signs and don't get dx'd until they get a CT-scan which often parents have had to fight for. Be sure your dr understands that you *must* rule out any medical reasons for her behavior -- and that may require that he step outside of his box medically. Our local ped is wonderful -- as soon as Aubrie comes in she disregards all the " rules " and looks at her with a fresh perspective. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Sue- Yes, sinus issues are common. Know also that many kids don't show typical signs and don't get dx'd until they get a CT-scan which often parents have had to fight for. Be sure your dr understands that you *must* rule out any medical reasons for her behavior -- and that may require that he step outside of his box medically. Our local ped is wonderful -- as soon as Aubrie comes in she disregards all the " rules " and looks at her with a fresh perspective. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi Sue, It's lovely to hear from you Jack also hits the side of his head quite violently at times. He seems to do this when he is angry or frustrated. I asked him why he does it and he said ' I do it when I need to sort out the feelings in my head' (his own words). hope you are all well & give my love to Clare & Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Hi Sue, It's lovely to hear from you Jack also hits the side of his head quite violently at times. He seems to do this when he is angry or frustrated. I asked him why he does it and he said ' I do it when I need to sort out the feelings in my head' (his own words). hope you are all well & give my love to Clare & Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 I've also noticed that my baby Aidan (11 months, 8.5 months corrected) tends to stroke hard his head, let's say on a " combing " way.. but sometimes it gets quite rough, as he's slaping himself on the head rather than just caressing his hair.. He's being doing this for a couple of months so far, and I would say that he does it when he's bored.. 'cause I haven't seen him doing it to get attention but when he is on his own, on his mat.. I'll let you know if I notice any change that can give us any further clue.. Pat, mum to Little Warrior Aidan (IRELAND) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 In a message dated 10/03/2006 20:18:09 GMT Standard Time, diaz_pat@... writes: I've also noticed that my baby Aidan (11 months, 8.5 months corrected) tends to stroke hard his head, let's say on a " combing " way.. but sometimes it gets quite rough, as he's slaping himself on the head rather than just caressing his hair.. Hi Pat, One of the things Jack has always done has been to twiddle with the front of his hair. He does it very frequently. He can't seem to sit still and do 'nothing'. He is either twiddling with his hair or twirling the little train ( the Tank Engine) he likes to hold in his hand. He doesn't have his train as often now as we are trying to wean him off it. He doesn't take it to school but as soon as he is home he needs to have it. He even holds it in his hand when he is asleep!! He is onto his 3rd as the paint gets all rubbed off and the wheels eventually fall off too. We've told him that once this one falls apart he'll not need another one. We'll see !!! I guess it's a bit like a baby/toddler with a comforter. Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Elaine - Dylan does a lot of hair twirling as well, which early on people thought of as simply self-stim. I really think it means he is processing information. I have found if we give him the time to break from the instruction and twirl, he then comes back to it, but if his staff gets stuck on the hair twirling then no progress is made. Dylan also is a spinner, always has something spinning in front of his eyes. This stopped for awhile when we were doing routine HANDLE program. Now he does it a lot again, as well as crossing all of his fingers, which tells me I need to figure out what I should be working on next. And then Jack's train sounds like Dylan's basting brush - he discovered it in a kitchen drawer when he was 4 1/2. He had one in his hand (except at school) until he was 8 1/2. His need for it dissipated after his second HANDLE appt. Kim > > In a message dated 10/03/2006 20:18:09 GMT Standard Time, > diaz_pat@... writes: > > I've also noticed that my baby Aidan (11 months, 8.5 months corrected) > tends to stroke hard his head, let's say on a " combing " way.. but > sometimes it gets quite rough, as he's slaping himself on the head > rather than just caressing his hair.. > > > > Hi Pat, > One of the things Jack has always done has been to twiddle with the front of > his hair. He does it very frequently. He can't seem to sit still and do > 'nothing'. He is either twiddling with his hair or twirling the little train > ( the Tank Engine) he likes to hold in his hand. > He doesn't have his train as often now as we are trying to wean him off it. > He doesn't take it to school but as soon as he is home he needs to have it. > He even holds it in his hand when he is asleep!! He is onto his 3rd as > the paint gets all rubbed off and the wheels eventually fall off too. We've > told him that once this one falls apart he'll not need another one. We'll see > !!! I guess it's a bit like a baby/toddler with a comforter. > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Elaine - Dylan does a lot of hair twirling as well, which early on people thought of as simply self-stim. I really think it means he is processing information. I have found if we give him the time to break from the instruction and twirl, he then comes back to it, but if his staff gets stuck on the hair twirling then no progress is made. Dylan also is a spinner, always has something spinning in front of his eyes. This stopped for awhile when we were doing routine HANDLE program. Now he does it a lot again, as well as crossing all of his fingers, which tells me I need to figure out what I should be working on next. And then Jack's train sounds like Dylan's basting brush - he discovered it in a kitchen drawer when he was 4 1/2. He had one in his hand (except at school) until he was 8 1/2. His need for it dissipated after his second HANDLE appt. Kim > > In a message dated 10/03/2006 20:18:09 GMT Standard Time, > diaz_pat@... writes: > > I've also noticed that my baby Aidan (11 months, 8.5 months corrected) > tends to stroke hard his head, let's say on a " combing " way.. but > sometimes it gets quite rough, as he's slaping himself on the head > rather than just caressing his hair.. > > > > Hi Pat, > One of the things Jack has always done has been to twiddle with the front of > his hair. He does it very frequently. He can't seem to sit still and do > 'nothing'. He is either twiddling with his hair or twirling the little train > ( the Tank Engine) he likes to hold in his hand. > He doesn't have his train as often now as we are trying to wean him off it. > He doesn't take it to school but as soon as he is home he needs to have it. > He even holds it in his hand when he is asleep!! He is onto his 3rd as > the paint gets all rubbed off and the wheels eventually fall off too. We've > told him that once this one falls apart he'll not need another one. We'll see > !!! I guess it's a bit like a baby/toddler with a comforter. > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Elaine - Dylan does a lot of hair twirling as well, which early on people thought of as simply self-stim. I really think it means he is processing information. I have found if we give him the time to break from the instruction and twirl, he then comes back to it, but if his staff gets stuck on the hair twirling then no progress is made. Dylan also is a spinner, always has something spinning in front of his eyes. This stopped for awhile when we were doing routine HANDLE program. Now he does it a lot again, as well as crossing all of his fingers, which tells me I need to figure out what I should be working on next. And then Jack's train sounds like Dylan's basting brush - he discovered it in a kitchen drawer when he was 4 1/2. He had one in his hand (except at school) until he was 8 1/2. His need for it dissipated after his second HANDLE appt. Kim > > In a message dated 10/03/2006 20:18:09 GMT Standard Time, > diaz_pat@... writes: > > I've also noticed that my baby Aidan (11 months, 8.5 months corrected) > tends to stroke hard his head, let's say on a " combing " way.. but > sometimes it gets quite rough, as he's slaping himself on the head > rather than just caressing his hair.. > > > > Hi Pat, > One of the things Jack has always done has been to twiddle with the front of > his hair. He does it very frequently. He can't seem to sit still and do > 'nothing'. He is either twiddling with his hair or twirling the little train > ( the Tank Engine) he likes to hold in his hand. > He doesn't have his train as often now as we are trying to wean him off it. > He doesn't take it to school but as soon as he is home he needs to have it. > He even holds it in his hand when he is asleep!! He is onto his 3rd as > the paint gets all rubbed off and the wheels eventually fall off too. We've > told him that once this one falls apart he'll not need another one. We'll see > !!! I guess it's a bit like a baby/toddler with a comforter. > > Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE > Scotland > > > > Quote Link to comment Share on other sites More sharing options...
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