Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 , This is one of the MOST FRUSTRATING things we have dealt with with my son. Actually that is WHY we started to medicate him a bit. He would scratch his face, bite his hand hit himself in the head. It drives me nuts. He will still do this if upset or hurting. though he does it much less frequently. Is she on any medications? Mark will be 17 in Sept. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Leroy, I am responding to you privately, but if you do not receive my email, please post back to the list. Tim Hartshorne, father of " LEROY DANIELS SR. " wrote: > I AM NEEDING SOME IMFORMATION ON SELF ABUSIVENESS,ASSOCIATED WITH > CHARGE SYNDROME CHILDREN.I HAVE BEEN CARING FOR A CHARGE CHILD FOR 14 > MONTHS. AND THIS CHILD IS VERY SELF ABUSIVE.SHE IS 15 YEARS > OLD.DEAF/BLIND MENTAL RETARDED MILDLEY.I AM AT WITS END OF KNOWING > WHAT TO DO FOR HER OR WHY SHE IS THIS WAY [sELF ABUSIVE].NOTHING > SEEMS TO WORK ANYMORE.SHE STAYS VIOLENT FOR DAYS AT A TIME.ANY > IMFORMATION WOULD BE APPRECIATED ON BEHAVIORS OF CHARGE SYNDROME > CHILDREN...PLEASE HELP THANK YOU REBECCA DANIELS > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Hi , Well you have come to the right place for advice these people are the experts. My son is 17 now and has chaRgE also and he is into self mutilation probably the thing that he does that upsets me the most, particularly when he picked his skin almost down to the bone on his forehead. Larry also picks his lips, pulls eye lashes and eyebrows out and pulls the hair on his head out, he also bites himself and hits himself and sometimes bangs his head on the wall oh and has this thing about plucking his pubic hair out. Is she medicated because with Larry when he has been on a psychotropic drug for a while he goes into a " toxic overload " and develops some self mutilating habits, a change in medication usually stops it also I have had GREAT success with alternative therapies especially HOMEOPATHY so I would suggest you seek out a CLASSICAL HOMEOPATH for some help. (A Classical Homeopath gives one off doses, where as a regular Homeopath gives you remedies that have to be taken over a period of time, I have always found a one off dose saves time and energy) Good Luck Jan Hewitson Mandurah, Western Australia. NEED HELP SOON!! > I AM NEEDING SOME IMFORMATION ON SELF ABUSIVENESS,ASSOCIATED WITH > CHARGE SYNDROME CHILDREN.I HAVE BEEN CARING FOR A CHARGE CHILD FOR 14 > MONTHS. AND THIS CHILD IS VERY SELF ABUSIVE.SHE IS 15 YEARS > OLD.DEAF/BLIND MENTAL RETARDED MILDLEY.I AM AT WITS END OF KNOWING > WHAT TO DO FOR HER OR WHY SHE IS THIS WAY [sELF ABUSIVE].NOTHING > SEEMS TO WORK ANYMORE.SHE STAYS VIOLENT FOR DAYS AT A TIME.ANY > IMFORMATION WOULD BE APPRECIATED ON BEHAVIORS OF CHARGE SYNDROME > CHILDREN...PLEASE HELP THANK YOU REBECCA DANIELS > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Tim, That was absolutely fantastic. I love reading some of your posts. I am now at the end of my classes in special education. I have used your ideas and information often, and your wives too! Especially in some of my psychology classes. You are incredibly clear and to the point of what many children need, not just CHARGE. I thank you. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Hello All, Because self-abuse is so common among children with CHARGE, I wanted to make hopefully a brief comment about it. Self-injury can have a physiological base, or a psychological base, and these can also influence each other. There are several physiological bases including: * the release of beta-enorphins in the brain - these act like a narcotic and provide pleasure, and so the pain is worth it. Most of us are not going to bang our heads to get to the pleasure, but once learned, it may be repeated. * sub-clinical seizures can cause self-injury * middle ear infections and other pain can lead to head banging and other self-abuse as a means to distract the person from the pain they are experiencing. * overarousal. This is one someone gets so pumped up and over-stimulated, that they either lose control, or suddenly try to withdraw from the situation, and one way is to self-abuse, because then there is total control over the stimuli. * self-stimulatory, stereotypic behavior. If a person is sensory deprived, they may try to provide stimulation to themselves, and injury-producing stimulation works for this, and then can become a pattern of behavior they have learned. The more psychological bases for self-injury are: * it produces a reaction in other people that is rewarding. * when no one listens to me or understands me or does what I want, it makes me mad and I attack myself. This is like a two year old getting so mad at a parent that they refuse to eat, or fall on the floor, or do other things that hurt them and not the parent. * stress. When a child is under stress the tention may be relieved by actions that hurt themselves. Stress may also lead to the physiological bases for self-abuse. * boredom. If you are just lying around with nothing to do and nothing to interest you, you may start pinching yourself, and the next thing you know you have a sore. So what can you do about any of this? One thing is to work hard to keep this from starting. Whenever starts the headbanging (which he has not done in a long time) I go to him, get myself between his head and whatever he is hitting against, and try to distract him with another activity. You have to be careful that this does not reinforce the headbanging, and you do that by being alert to situations where it might start, and intervening ahead of time. Obviously, you also want to check out medical causes like seizures, illness, etc. The biggest thing that can be done for the problem is to work on communication. All behavior is a form of communication. The self-abuse is a message to you. The problem is to figure out the message. I'll give you a simple example. loves baths. But I have two younger kids at home, and when he is in the bathroom he turns the hot water on and can scald himself, and so we have to stay in the bathroom with him. So for those reason I can't give him a bath everytime he thinks he would like one. When he wants one he will take my or 's hand and lead us to the bathroom. I know what he wants, and so I sign " no " . That just gets him mad. pointed out to me that my saying " no " does not communicate to him that I understand what he wants. So what we did after that was to let him take us into the bathroom. He turns on the lights. I sign " what? " He signs " bath " . I repeat, with a question mark on my face " bath? " and then " no " . 90% of the time, he then turns and leaves the bathroom. No tantrum. Imagine if throughout the day, you did not know if anyone understood or cared about what you wanted. Over time that could lead to serious self-abuse as a response. has severe communication problems, and I know some of your CHARGER's do not. But still, think about the self-abuse as their telling you something in their own language. They may not even be able to articulate to themselves what it is, but there is a message there. I am not totally opposed to medication. Heaven knows that as soon as I took that position 's behavior would get so bad we'd use drugs. But I do have a concern that in some cases using drugs supresses the communication, and the person may stop attempting to communicate their needs and wants. But drugs can also help in some cases to stop a behavior long enough that something else can be put in its place. But I would encourage everyone to not think of any drug for behavior to be the answer and once you find the right one you're done. I would only use it as a means to give you some time to deal with the sensory deprivation of many of our children, and the communication problems of many of our children, so they can go off the drugs without returning to self-injury. Sorry to be so long, but this is on my mind as I am off to Brisbane in a few weeks to talk about behavior and then to the Minneapolis conference to do the same thing. Tim Hartshorne Jan Hewitson wrote: > Hi , > Well you have come to the right place for advice these > people are the experts. > My son is 17 now and has chaRgE also and he is into self mutilation > probably the thing that he does that upsets me the most, particularly when > he picked his skin almost down to the bone on his forehead. Larry also > picks his lips, pulls eye lashes and eyebrows out and pulls the hair on his > head out, he also bites himself and hits himself and sometimes bangs his > head on the wall oh and has this thing about plucking his pubic hair out. > Is she medicated because with Larry when he has been on a psychotropic drug > for a while he goes into a " toxic overload " and develops some self > mutilating habits, a change in medication usually stops it also I have had > GREAT success with alternative therapies especially HOMEOPATHY so I would > suggest you seek out a CLASSICAL HOMEOPATH for some help. (A Classical > Homeopath gives one off doses, where as a regular Homeopath gives you > remedies that have to be taken over a period of time, I have always found a > one off dose saves time and energy) > > Good Luck Jan Hewitson > Mandurah, Western Australia. > NEED HELP SOON!! > > > I AM NEEDING SOME IMFORMATION ON SELF ABUSIVENESS,ASSOCIATED WITH > > CHARGE SYNDROME CHILDREN.I HAVE BEEN CARING FOR A CHARGE CHILD FOR 14 > > MONTHS. AND THIS CHILD IS VERY SELF ABUSIVE.SHE IS 15 YEARS > > OLD.DEAF/BLIND MENTAL RETARDED MILDLEY.I AM AT WITS END OF KNOWING > > WHAT TO DO FOR HER OR WHY SHE IS THIS WAY [sELF ABUSIVE].NOTHING > > SEEMS TO WORK ANYMORE.SHE STAYS VIOLENT FOR DAYS AT A TIME.ANY > > IMFORMATION WOULD BE APPRECIATED ON BEHAVIORS OF CHARGE SYNDROME > > CHILDREN...PLEASE HELP THANK YOU REBECCA DANIELS > > > > > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > > 20-22, 2001. Information will be available first in CHARGE Accounts, the > > CHARGE Syndrome Foundation's newsletter. " > > > > 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 > > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2000 Report Share Posted August 25, 2000 Tim, great suggestions re meds etc--thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2000 Report Share Posted August 26, 2000 Thanks Bonnie. As you know, having a child with CHARGE is an education all on its own. I have learned a lot. Tim Turk22082@... wrote: > Tim, > > That was absolutely fantastic. I love reading some of your posts. I am now > at the end of my classes in special education. I have used your ideas and > information often, and your wives too! Especially in some of my psychology > classes. You are incredibly clear and to the point of what many children > need, not just CHARGE. I thank you. > > Bonnie > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 Quote Link to comment Share on other sites More sharing options...
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