Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 Tim, It was at the age of 3-4 that Kennedy went into this state as well - the behavioural issues in CHARGE are very complex; in fact, a recent American Journal of Medical Genetics had a section devoted to the behaviours in CHARGE. If you go to : http://www.chargesyndrome.org/resources.asp you will find the link. I have been moderating this listserv for about seven years now and I've seen the behaviours you described on here many, many times. On a happier note, with a combination of medication (ritalin worked for our daughter) and behaviour techniques, Kennedy is doing much much better and most of those HORRID behaviours are now almost non-existent. It was a difficult time and I hope it's not long-lasting for you and your wife. Welcome to the list, by the way! Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2006 Report Share Posted January 18, 2006 KIm, as usual, this was a great explanation of.....everything!!! pam Pamela J. , M.A., CAGS Licensed Educational Psychologist Perkins School for the Blind, Deafblind Program 175 North Beacon St. Watertown, MA 02472 > ---------- > From: CHARGE on behalf of Kim Lauger > Reply To: CHARGE > Sent: Wednesday, January 18, 2006 12:04 AM > To: CHARGE > Subject: Re: Hello > > Hello, > > Welcome to the list. Would you mind telling us more about her CHARGE like > features? > > Does she have spoken or signed language, so the being " out of control " seems > different than one would expect given her understanding of social norms, > language, that mom or dad are pleased or not pleased when she does ______? > > There has been a lot of research into behavior in CHARGE recently, it seems > pretty clear that behavior is another CHARGE feature, but like with > everything else there are extremes; some kids have a few quirks and some > kids have lots of problems. > > When we say CHARGE behavior it can refer to a lot of things, such as > a tendency to get stuck on a thought or action, to be impulsive, to have a > fluctuation in being wild (seemingly beyond their ability to stop it) and > very low activity, a need to wave a hand in front of the eye or other > self-stim actions, and some are even diagnosed or have symptoms of pervasive > developmental disorder (autism spectrum), trouble sleeping and so on. > > Many parents report that when their child is " out of control " ,if the adult > tells them no, the child just laughs more. This makes most people mad, > because it appears the child is doing it on purpose. > > Instead (at least initially) we think that children with CHARGE have > difficulty regulating their emotional state, so when they get wild, any > further " big " input just adds more to an overwhelmed system and they just > get more wild. For us when this happens, I did not think it was from > frustration at lack of formal language or anything like that. It is like he > woke some days and I could just tell his body was on overdrive and he could > not calm it down. For us, we have a safe, quiet place where he goes to get > his " wilds " out. He can kick, and laugh, and bounce on the mattress, but he > cannot hurt his siblings, the dog, the house, or himself. If I go to get > him too soon, he pushes me away. When he is ready, he lets me bring him > out. This is not time out or punishment, but is respecting his need to > regulate his nervous system in a way that works for him. I find it far more > effective than being angry with him, because he hit his sister in an attempt > to play. I of course try to redirect it first, but if he is one of those > states, then off he goes. > > Another thing that seems to be common, is needing a longer time to process > information. This shows up behaviorally as trouble with transitions or > changes in routine, often leading to " melt downs " . > > There is a lot of information on this topic available, although overall we > are simply trying to learn more. Brown is wonderful at understanding > and explaining some of these differences. If you ever hear he is coming to > your area, go and see him. > > A special edition of the American Journal of Medical Genetics was devoted to > CHARGE, March of 2005. The majority of the articles focused on behavior. > These can be accessed by going to the website of the CHARGE Syndrome website > listed at the bottom of each post on this list. > > Kim Lauger > Mom to Dylan 9 (CHaRGE), Kayla 15, Tyler 17, wife to Roy > Tucson, AZ > > > > > Hello, > > My wife and I are new to your group, we just recently found out > > about this syndrome and would like to know more information,our child is > > three years old and has most of the symptoms related to CHARGE however there> > > are some things that she does that we are not sure of. She seems " out of > > control " as far as talking back, hitting other siblings and adults, etc. Is > > this part of this syndrome? has anybody else experienced these same traits > > in their children?. > > > > > > Sincerely, > > > > Tim & Fellows > > Preston, Idaho > > > > > > > > > > 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 - for CHARGE Syndrome Canada > > information and membership, please visit http://www.chargesyndrome.ca or email > > info@... . > > 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 January 18, 2006 Report Share Posted January 18, 2006 Thanks Pam, And I should add after rereading this, laughter does not always equal happy. It can often just be they symptom of an overwhelmed nervous system. Far more pleasant to deal with than a melt-down if laughing is all they are doing, but if it gets in the way of function, it is still a problem. Kim On 1/18/06 6:12 AM, " pamela.ryan@... " wrote: > KIm, > as usual, this was a great explanation of.....everything!!! > pam > > Pamela J. , M.A., CAGS > Licensed Educational Psychologist > Perkins School for the Blind, Deafblind Program > 175 North Beacon St. > Watertown, MA 02472 > >> ---------- >> From: CHARGE on behalf of Kim Lauger >> Reply To: CHARGE >> Sent: Wednesday, January 18, 2006 12:04 AM >> To: CHARGE >> Subject: Re: Hello >> >> Hello, >> >> Welcome to the list. Would you mind telling us more about her CHARGE like >> features? >> >> Does she have spoken or signed language, so the being " out of control " seems >> different than one would expect given her understanding of social norms, >> language, that mom or dad are pleased or not pleased when she does ______? >> >> There has been a lot of research into behavior in CHARGE recently, it seems >> pretty clear that behavior is another CHARGE feature, but like with >> everything else there are extremes; some kids have a few quirks and some >> kids have lots of problems. >> >> When we say CHARGE behavior it can refer to a lot of things, such as >> a tendency to get stuck on a thought or action, to be impulsive, to have a >> fluctuation in being wild (seemingly beyond their ability to stop it) and >> very low activity, a need to wave a hand in front of the eye or other >> self-stim actions, and some are even diagnosed or have symptoms of pervasive >> developmental disorder (autism spectrum), trouble sleeping and so on. >> >> Many parents report that when their child is " out of control " ,if the adult >> tells them no, the child just laughs more. This makes most people mad, >> because it appears the child is doing it on purpose. >> >> Instead (at least initially) we think that children with CHARGE have >> difficulty regulating their emotional state, so when they get wild, any >> further " big " input just adds more to an overwhelmed system and they just >> get more wild. For us when this happens, I did not think it was from >> frustration at lack of formal language or anything like that. It is like he >> woke some days and I could just tell his body was on overdrive and he could >> not calm it down. For us, we have a safe, quiet place where he goes to get >> his " wilds " out. He can kick, and laugh, and bounce on the mattress, but he >> cannot hurt his siblings, the dog, the house, or himself. If I go to get >> him too soon, he pushes me away. When he is ready, he lets me bring him >> out. This is not time out or punishment, but is respecting his need to >> regulate his nervous system in a way that works for him. I find it far more >> effective than being angry with him, because he hit his sister in an attempt >> to play. I of course try to redirect it first, but if he is one of those >> states, then off he goes. >> >> Another thing that seems to be common, is needing a longer time to process >> information. This shows up behaviorally as trouble with transitions or >> changes in routine, often leading to " melt downs " . >> >> There is a lot of information on this topic available, although overall we >> are simply trying to learn more. Brown is wonderful at understanding >> and explaining some of these differences. If you ever hear he is coming to >> your area, go and see him. >> >> A special edition of the American Journal of Medical Genetics was devoted to >> CHARGE, March of 2005. The majority of the articles focused on behavior. >> These can be accessed by going to the website of the CHARGE Syndrome website >> listed at the bottom of each post on this list. >> >> Kim Lauger >> Mom to Dylan 9 (CHaRGE), Kayla 15, Tyler 17, wife to Roy >> Tucson, AZ >> >> >> >>> Hello, >>> My wife and I are new to your group, we just recently found out >>> about this syndrome and would like to know more information,our child is >>> three years old and has most of the symptoms related to CHARGE however >>> there> >>> are some things that she does that we are not sure of. She seems " out of >>> control " as far as talking back, hitting other siblings and adults, etc. Is >>> this part of this syndrome? has anybody else experienced these same traits >>> in their children?. >>> >>> >>> Sincerely, >>> >>> Tim & Fellows >>> Preston, Idaho >>> >>> >>> >>> >>> 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 - for CHARGE Syndrome Canada >>> information and membership, please visit http://www.chargesyndrome.ca or >>> email >>> info@... . >>> 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 January 18, 2006 Report Share Posted January 18, 2006 lurks at times. As with most professionals, " consulting " on the list could be a full time job. Kim > kim is david brown on the list or is that a question for lisa just wondering > anyway welcom to the group its great in here and kim is right bout all the > issues and we really need to understand more about the specific out of > control behaviors to help you hugs ellen in aus > > >> >> Hello, >> >> Welcome to the list. Would you mind telling us more about her CHARGE like >> features? >> >> Does she have spoken or signed language, so the being " out of control " >> seems >> different than one would expect given her understanding of social norms, >> language, that mom or dad are pleased or not pleased when she does ______? >> >> There has been a lot of research into behavior in CHARGE recently, it >> seems >> pretty clear that behavior is another CHARGE feature, but like with >> everything else there are extremes; some kids have a few quirks and some >> kids have lots of problems. >> >> When we say CHARGE behavior it can refer to a lot of things, such as >> a tendency to get stuck on a thought or action, to be impulsive, to have a >> fluctuation in being wild (seemingly beyond their ability to stop it) and >> very low activity, a need to wave a hand in front of the eye or other >> self-stim actions, and some are even diagnosed or have symptoms of >> pervasive >> developmental disorder (autism spectrum), trouble sleeping and so on. >> >> Many parents report that when their child is " out of control " ,if the adult >> tells them no, the child just laughs more. This makes most people mad, >> because it appears the child is doing it on purpose. >> >> Instead (at least initially) we think that children with CHARGE have >> difficulty regulating their emotional state, so when they get wild, any >> further " big " input just adds more to an overwhelmed system and they just >> get more wild. For us when this happens, I did not think it was from >> frustration at lack of formal language or anything like that. It is like >> he >> woke some days and I could just tell his body was on overdrive and he >> could >> not calm it down. For us, we have a safe, quiet place where he goes to >> get >> his " wilds " out. He can kick, and laugh, and bounce on the mattress, but >> he >> cannot hurt his siblings, the dog, the house, or himself. If I go to get >> him too soon, he pushes me away. When he is ready, he lets me bring him >> out. This is not time out or punishment, but is respecting his need to >> regulate his nervous system in a way that works for him. I find it far >> more >> effective than being angry with him, because he hit his sister in an >> attempt >> to play. I of course try to redirect it first, but if he is one of those >> states, then off he goes. >> >> Another thing that seems to be common, is needing a longer time to process >> information. This shows up behaviorally as trouble with transitions or >> changes in routine, often leading to " melt downs " . >> >> There is a lot of information on this topic available, although overall we >> are simply trying to learn more. Brown is wonderful at >> understanding >> and explaining some of these differences. If you ever hear he is coming >> to >> your area, go and see him. >> >> A special edition of the American Journal of Medical Genetics was devoted >> to >> CHARGE, March of 2005. The majority of the articles focused on behavior. >> These can be accessed by going to the website of the CHARGE Syndrome >> website >> listed at the bottom of each post on this list. >> >> Kim Lauger >> Mom to Dylan 9 (CHaRGE), Kayla 15, Tyler 17, wife to Roy >> Tucson, AZ >> >> >> >>> Hello, >>> My wife and I are new to your group, we just recently found out >>> about this syndrome and would like to know more information,our child is >>> three years old and has most of the symptoms related to CHARGE however >> there >>> are some things that she does that we are not sure of. She seems " out >> of >>> control " as far as talking back, hitting other siblings and adults, etc. >> Is >>> this part of this syndrome? has anybody else experienced these same >> traits >>> in their children?. >>> >>> >>> Sincerely, >>> >>> Tim & Fellows >>> Preston, Idaho >>> >>> >>> >>> >>> 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 - for CHARGE Syndrome >> Canada >>> information and membership, please visit http://www.chargesyndrome.ca or >> email >>> info@... . >>> 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 February 7, 2006 Report Share Posted February 7, 2006 , I think of you and the boys all the time. Glad you're back and sharing of the Halloran house. I just love your posts. Bonnie, mom to a 23, Patty 21 (CHARGE) and wife to Quote Link to comment Share on other sites More sharing options...
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