Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Hi Everyone, I have not posted in a long time, but I do glance through the digest. The papers from the CHARGE conference on behavior are with the editor of the journal, and I am hopeful that we will be hearing something soon. I am more and more convinced that what our kids have is a Regulatory Disorder. What this means is that they have difficulty coping with different and varying thresholds for stimulation. If you have a high threshold for stimulation that means it takes a lot to stimulate you. So for example if you are deaf, it takes more loud sound for you to notice it and be stimulated. If you have a low threshold, then it takes very little to stimulate you. For example if you are tactically defensive, then even air blowing across your skin might drive you nuts. Most of us are able to regulate our arousal levels so that we manage quite well. You soon tune out a fan that is blowing air in your direction, or a motor that is making noise in the background. But with a regulatory disorder, it is very difficult to tune these things out once they register. To complicate matters, there are two ways of responding to different thresholds. Let's say you have a high threshold for sound. One way you might respond is to be fairly passive because not much is registering. A second way is to actively seek out stimulation, and this might be sound stimulation, but it could also be other forms. In other words, the lack of stimulation could drive you nuts enough that you do whatever you can to stimulate yourself. Now let's say you have a low threshold for sound, and so any little noise drives you nuts. You can respond to this by being overly sensitive to the stimulation, or you can respond by trying to avoid stimulation by pulling your blanket over your head, crawling under a table, or whatever. I think what makes this challenging in CHARGE is that thresholds can vary a great deal for different senses. So your vestibular sense might have a low threshold, while visual may have a high. So the child might be trying to crawl away from vestibular experiences and simultaneously be trying to seek out visual stimulation. Also, thresholds can vary during the course of a day or over time. If you are feeling ill, you might have a lower or higher threshold. If you are tired you might have a lower or higher threshold. The kinds of behaviors that are seen with regulatory disorders are described as " driven " , " activity seeking " , " impulsive " , there may be sleep, eating, and elimination difficulties, there may be mood problems with mood shifting dramatically all of a sudden, there may be obsessive concern about a tiny detail - in other words a lot of the problems we see in children with CHARGE. I believe for our kids the cause is a combination of sensory processing difficulties and problems with " executive functions " from the brain. This is still behavior as communication. The behavior has a clear purpose - to help with maintaining arousal levels and coping with different thresholds for stimulation. Once you understand the purpose of the behavior, it makes sense. There are some suggested interventions, but this is already way too long. I promise to email again with more. Tim Hartshorne (father of 14) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Tim, You are brilliant. thank you. pam > ---------- > From: Tim Hartshorne > Reply To: CHARGE > Sent: Friday, February 6, 2004 9:46 AM > To: CHARGE list > Subject: behavior problems > > Hi Everyone, > > I have not posted in a long time, but I do glance through the digest. > The papers from the CHARGE conference on behavior are with the editor of > the journal, and I am hopeful that we will be hearing something soon. > > I am more and more convinced that what our kids have is a Regulatory > Disorder. What this means is that they have difficulty coping with > different and varying thresholds for stimulation. If you have a high > threshold for stimulation that means it takes a lot to stimulate you. > So for example if you are deaf, it takes more loud sound for you to > notice it and be stimulated. If you have a low threshold, then it takes > very little to stimulate you. For example if you are tactically > defensive, then even air blowing across your skin might drive you nuts. > Most of us are able to regulate our arousal levels so that we manage > quite well. You soon tune out a fan that is blowing air in your > direction, or a motor that is making noise in the background. But with > a regulatory disorder, it is very difficult to tune these things out > once they register. > > To complicate matters, there are two ways of responding to different > thresholds. Let's say you have a high threshold for sound. One way you > might respond is to be fairly passive because not much is registering. > A second way is to actively seek out stimulation, and this might be > sound stimulation, but it could also be other forms. In other words, > the lack of stimulation could drive you nuts enough that you do whatever > you can to stimulate yourself. Now let's say you have a low threshold > for sound, and so any little noise drives you nuts. You can respond to > this by being overly sensitive to the stimulation, or you can respond by > trying to avoid stimulation by pulling your blanket over your head, > crawling under a table, or whatever. > > I think what makes this challenging in CHARGE is that thresholds can > vary a great deal for different senses. So your vestibular sense might > have a low threshold, while visual may have a high. So the child might > be trying to crawl away from vestibular experiences and simultaneously > be trying to seek out visual stimulation. Also, thresholds can vary > during the course of a day or over time. If you are feeling ill, you > might have a lower or higher threshold. If you are tired you might have > a lower or higher threshold. > > The kinds of behaviors that are seen with regulatory disorders are > described as " driven " , " activity seeking " , " impulsive " , there may be > sleep, eating, and elimination difficulties, there may be mood problems > with mood shifting dramatically all of a sudden, there may be obsessive > concern about a tiny detail - in other words a lot of the problems we > see in children with CHARGE. I believe for our kids the cause is a > combination of sensory processing difficulties and problems with > " executive functions " from the brain. > > This is still behavior as communication. The behavior has a clear > purpose - to help with maintaining arousal levels and coping with > different thresholds for stimulation. Once you understand the purpose > of the behavior, it makes sense. There are some suggested > interventions, but this is already way too long. I promise to email > again with more. > > Tim Hartshorne (father of 14) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 hi would this extend to light?, photosensitivity? ... i seem to recall someone saying that light was often fasinating to their CHARGE'r ... ds seemed to hate (natural) light ... and we were unsure of the reason ... pain in response to bright light in glaucoma eye, or pain in response to bright light in coloboma eye were our guesses ... it seems to fluctuate too ... at the moment he is fine outside on a cloudy day, and manages in the bright sun too, by covering his eyes himself or allowing us to put sunglasses/hat on .... sometimes he just takes them off and doesn't seem to mind at all!! but, we used to have all our curtains closed during the day when he was a baby! it is great ... it is totally changing how we can live our lifes! ... really hoping that he doesn't go back to hating being in the sun again ... Jo ds Ben, ds Josh CHaRGE'r ----- Original Message ----- > I am more and more convinced that what our kids have is a Regulatory > Disorder. What this means is that they have difficulty coping with > different and varying thresholds for stimulation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 Tim- As always it is sooooo great to have our kids " stuff " put into words. And might I add, so exactly and understandably. Thank you Tim for all of your contributions to our " stuff " . Barbara-mom,(CHARGE)9,Rosie14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2004 Report Share Posted February 8, 2004 Great Tim, many good wishes for your study with Jude. You are THE great mind. OK, now you know I don't necessarily agree with this statement: " >>>This is still behavior as communication. " While the behavior may have a clear purpose " - to help with maintaining arousal levels and coping with different thresholds for stimulation. " , in many cases I find it almost an unconscious process, and the individual's level of awareness is often not there. While this analysis helps US understand the purpose of the behavior, and thereby better communicate strategies and awareness to THEM, I don't see this behavior placed in the realm of " behavior as communication " , unless you also put a hiccup or sneeze and other autonomic or self-regulartary body responses in that light. I know your trying not to change your title page. Tee hee LOL Ann Gloyn, Specialist Teacher > Hi Everyone, > > I am more and more convinced that what our kids have is a Regulatory Disorder. What this means is that they have difficulty coping with different and varying thresholds for stimulation. If you have a high threshold for stimulation that means it takes a lot to stimulate you. >>>>> Also, thresholds can vary during the course of a day or over time. If you are feeling ill, you might have a lower or higher threshold. If you are tired you might have a lower or higher threshold. > The kinds of behaviors that are seen with regulatory disorders are described as " driven " , " activity seeking " , " impulsive " , there may be sleep, eating, and elimination difficulties, there may be mood problems with mood shifting dramatically all of a sudden, there may be obsessive concern about a tiny detail - in other words a lot of the problems we see in children with CHARGE. I believe for our kids the cause is a combination of sensory processing difficulties and problems with " executive functions " from the brain. > This is still behavior as communication. The behavior has a clear purpose - to help with maintaining arousal levels and coping with different thresholds for stimulation. Once you understand the purpose > of the behavior, it makes sense. There are some suggested interventions, but this is already way too long. I promise to email > again with more. > Tim Hartshorne (father of 14) > Quote Link to comment Share on other sites More sharing options...
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