Guest guest Posted December 6, 2006 Report Share Posted December 6, 2006 Hi all, My wife had been reading about autism and charge on the german forum, there was little information and it was confused, so I did some searching and found an american study that was done which basically said charge children could exhibit behavious similar to autism. The basis of the study was a questionaire they sent out, has anyone got a blank copy of this questionaire they could let me have. thanks Ian Cai's dad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2006 Report Share Posted December 6, 2006 Ian, I think I had it at one time but I can't for the life of me find it. I'm on my laptop now; when I'm over on my desktop, I'll have a look there. www.chargesyndrome.info > > Hi all, > > My wife had been reading about autism and charge on the german forum, > there was little information and it was confused, so I did some > searching and found an american study that was done which basically said > charge children could exhibit behavious similar to autism. The basis of > the study was a questionaire they sent out, has anyone got a blank copy > of this questionaire they could let me have. > > thanks Ian > Cai's dad > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2006 Report Share Posted December 8, 2006 Ian, Yes, children with CHARGE often exhibit what could be called " autistic-like " behaviors, but it's usually NOT autism. Take a look at the articles in the American Journal of Medical Genetics on behavior - there are links for downloading any of the articles at the CHARGE Syndrome Foundation website, www.chargesyndrome.org If you want more information specifically on the behaviors, get in touch with Tim Hartshorne (harts1ts@...). Tim wrote some of the articles, editied that issue of the journal, is a psychologist who specializes in behavior in CHARGE syndrome, and has a 17 year old son with CHARGE. Tim can probalby supply you withe questionnaire and answer other questions you have. Cai is adorable, by the way! Meg Meg Hefner MS Genetic Counselor St. Louis MO > > Hi all, > > My wife had been reading about autism and charge on the german forum, > there was little information and it was confused, so I did some > searching and found an american study that was done which basically said > charge children could exhibit behavious similar to autism. The basis of > the study was a questionaire they sent out, has anyone got a blank copy > of this questionaire they could let me have. > > thanks Ian > Cai's dad > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 This is the sentence that interested me, What can we do as parents now to help Cai cope with change and environmental stressors. " The patterns of scores found suggest that teachers and parents may want to focus some of their attention on helping children with CHARGE learn to cope with change and environmental stressors. " the above sentence was taken from this article Research Article Autistic-like behavior in CHARGE syndrome S. Hartshorne *, Tina L. Grialou, Kellie R. Psychology Department, Central Michigan University, Mount Pleasant, Michigan email: S. Hartshorne (tim.hartshorne@...) which can be found here http://www3.interscience.wiley.com/cgi-bin/fulltext/109862195/HTMLSTART?CRETRY=1\ & SRETRY=0 thanks Ian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Hi Ian, There are several things to consider. First, making the daily schedule at both home and school to make life predictable. I like some version of a calendar system where the kids have a visual calendar with events on Velcro so that they can be modified when necessary. But there are lots of variations, and any state deafblind project can assist with that. Second, check the environment to see how it matches for a kid with multi-sensory impairments. Brown's article in the same issue of AJMG demonstrates many ways that this might be considered. Third, provide the child with more time to complete tasks and more opportunity for breaks. There is some research that suggests people can attend for about 7 minute intervals and then become distracted. With our sensory skills and maturity most of us manage those times in between quite well. But for our kids with CHARGE this can be very challenging. They don't always know that they need a break or why. And teachers don't always understand this either and think the child should be able to attend for longer intervals. Fourth, our kids need much more monitoring for understanding and comprehension of what they are learning. It is harder for them to fill in the holes or gaps of their understanding of what they are learning. When those holes become really big, the child does what we all do, and stops attending or learning. Fifth, provide opportunities for interaction with " normal " peers. Start this as young as possible and continue. Sixth, is communication. Everything in the curriculum needs to address communication skills. My son uses PECS or picture exchange communication system which was developed for kids with autism who have limited language. But even if your child can talk, that does not mean that they comprehend their environment. We adults need to stand between the child and the world (figuratively) and translate the world for the child. Show them how to experience it and what meaning there is out there. Seventh is to acknowledge and honor some of the preferences that our children express. There is nothing more frustrating in life than limited choices. They are not going to figure out how to direct their life in the future without some experience of making choices now. Those are off the top of my head for right now. I mentioned the deafblind projects. Many of them will serve a kid with CHARGE even when that kid is not specifically diagnosed as deafblind. Their services are free and can be very beneficial. They are skilled at helping schools and parents figure out how to build a world for a child who is deafblind. Tim Hartshorne (father of with CHARGE and a bunch of others) S. Hartshorne Professor of Psychology Sloan Hall 215 Central Michigan University Mount Pleasant, MI 48859 (989)774-6479 office (989)774-2553 fax tim.hartshorne@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 Tim, Your ³top of your head² is deeper than many who spend time thinking!! pam On 12/12/06 9:35 AM, " Hartshorne, S " wrote: > > > > > Hi Ian, > > There are several things to consider. First, making the daily schedule > at both home and school to make life predictable. I like some version > of a calendar system where the kids have a visual calendar with events > on Velcro so that they can be modified when necessary. But there are > lots of variations, and any state deafblind project can assist with > that. Second, check the environment to see how it matches for a kid > with multi-sensory impairments. Brown's article in the same > issue of AJMG demonstrates many ways that this might be considered. > Third, provide the child with more time to complete tasks and more > opportunity for breaks. There is some research that suggests people can > attend for about 7 minute intervals and then become distracted. With > our sensory skills and maturity most of us manage those times in between > quite well. But for our kids with CHARGE this can be very challenging. > They don't always know that they need a break or why. And teachers > don't always understand this either and think the child should be able > to attend for longer intervals. Fourth, our kids need much more > monitoring for understanding and comprehension of what they are > learning. It is harder for them to fill in the holes or gaps of their > understanding of what they are learning. When those holes become really > big, the child does what we all do, and stops attending or learning. > Fifth, provide opportunities for interaction with " normal " peers. Start > this as young as possible and continue. Sixth, is communication. > Everything in the curriculum needs to address communication skills. My > son uses PECS or picture exchange communication system which was > developed for kids with autism who have limited language. But even if > your child can talk, that does not mean that they comprehend their > environment. We adults need to stand between the child and the world > (figuratively) and translate the world for the child. Show them how to > experience it and what meaning there is out there. Seventh is to > acknowledge and honor some of the preferences that our children express. > There is nothing more frustrating in life than limited choices. They > are not going to figure out how to direct their life in the future > without some experience of making choices now. > > Those are off the top of my head for right now. I mentioned the > deafblind projects. Many of them will serve a kid with CHARGE even when > that kid is not specifically diagnosed as deafblind. Their services are > free and can be very beneficial. They are skilled at helping schools > and parents figure out how to build a world for a child who is > deafblind. > > Tim Hartshorne (father of with CHARGE and a bunch of others) > > S. Hartshorne > > Professor of Psychology > > Sloan Hall 215 > > Central Michigan University > > Mount Pleasant, MI 48859 > > (989)774-6479 office > > (989)774-2553 fax > > tim.hartshorne@... <mailto:tim.hartshorne%40cmich.edu> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 At first I thought it might be classified as CVI but CVI seems to be found in children that are non verbal and a bit of a sticky diagnosis at lest as far as I can tell. I did go for testing but never completed it as I ran out of money. Maybe it would be better if I told you the story of how I came to know what I know and get along as I do. It is an interesting story and about time that I wrote it. There are mostly happy memories for me as it is very relieving to find that what you feel and know is right. Perhaps you guys can put a little bit of pressure on me to write it. I just got the latest version of dragon so I can't claim accommodation issues. And when I finish it I can put it on my web page. Just as someone else's web page helped me so many years ago... But I need people to push me and remind me that it needs to be done. I tend to hit the snooze button on my phone/PDA when it trys to tell me of such things. That is another accommodation that I have. My phone vibrates a song to let me know that there is something I need to do. So keep on me and you will have a very interesting story to share with people. And a true on at that. I will get you a preview. In California where I live people that are non legally blind are not allowed to use a white cane or get a guide dog. I used a long cane for many years and I use a guide dog now, however I am still not legally blind nor do I have any condition that would expect my to become legally blind. Yet I have broken no laws in my state nor any other state for that matter. Interested now?... -- Beth Koenig bethko@... Director of Deaf Blind Services Orange County Deaf Advocacy Center http://www.deafadvocacy.org/dbs > > Beth, you have stated an opinion I have held as well. The - as yet not fully understood - vision issues in autism may be something akin to the not yet fully understood visual processing issues in CHARGE. I would be very surprised if there isn't some connection to the way information is imported through the eyes and brains that affect how some kids with CHARGE have difficulty gaining clues from their environment. > > I would also be surprised if there weren't some sort of similar processing issue relation to auditory function that affects how kids with CHARGE and kids with autism hear things. > > With autism yourself, can you share some of the ways your functional blindness affects you and your daily living and learning? Is there some kind of cortical vision issue going on? > > I hope you don't mind the questions. Since you shared this information with us, it seems as if you might be willing to tell us a bit about yourself. > > > > Re: Re: Autism and charge > > Hello, > I have done some studying in the past related to children with autism and > children with sensory impairments. And they are similarities in their > behavior. Enough so that some children with autism may in fact be > functionally deaf or blind. We already know that many of them have " sensory > issues " . So this could very well be why charge syndrome kids behaviors look > like autistic kids behaviors. Or the other way around. Either way the kids > aren't getting the sensory input that " normally " developing kids get. > By the way, I'm autistic and functionally blind myself. > > Beth Koenig > bethko@... > Director of Deaf Blind Services > Orange County Deaf Advocacy Center > http://www.deafadvocacy.org/dbs > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 ....Very definitely interested in your story! Consider yourself 'pressured'. It is my impression that many individuals may have cortical vision impairment and be verbal. So, I don't think the two conditions are mutually-exclusive. :-) legally blind in one eye and in Caliornia, too. Mom to Kendra, 20 with CHARGE, , 26, and Camille, 28 Re: Re: Autism and charge > > Hello, > I have done some studying in the past related to children with autism and > children with sensory impairments. And they are similarities in their > behavior. Enough so that some children with autism may in fact be > functionally deaf or blind. We already know that many of them have " sensory > issues " . So this could very well be why charge syndrome kids behaviors look > like autistic kids behaviors. Or the other way around. Either way the kids > aren't getting the sensory input that " normally " developing kids get. > By the way, I'm autistic and functionally blind myself. > > Beth Koenig > bethko@... > Director of Deaf Blind Services > Orange County Deaf Advocacy Center > http://www.deafadvocacy.org/dbs > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2006 Report Share Posted December 12, 2006 YES!!!!!! pam > > > > > At first I thought it might be classified as CVI but CVI seems to be > found in children that are non verbal and a bit of a sticky diagnosis > at lest as far as I can tell. I did go for testing but never completed > it as I ran out of money. Maybe it would be better if I told you the > story of how I came to know what I know and get along as I do. It is > an interesting story and about time that I wrote it. There are mostly > happy memories for me as it is very relieving to find that what you > feel and know is right. Perhaps you guys can put a little bit of > pressure on me to write it. I just got the latest version of dragon so > I can't claim accommodation issues. And when I finish it I can put it > on my web page. Just as someone else's web page helped me so many > years ago... > But I need people to push me and remind me that it needs to be done. I > tend to hit the snooze button on my phone/PDA when it trys to tell me > of such things. That is another accommodation that I have. My phone > vibrates a song to let me know that there is something I need to do. > So keep on me and you will have a very interesting story to share with > people. And a true on at that. > > I will get you a preview. > > In California where I live people that are non legally blind are not > allowed to use a white cane or get a guide dog. I used a long cane for > many years and I use a guide dog now, however I am still not legally > blind nor do I have any condition that would expect my to become > legally blind. Yet I have broken no laws in my state nor any other > state for that matter. > > Interested now?... -- Pamela J. , M.A., CAGS Licensed Educational Psychologist Deafblind Program Perkins School for the Blind 175 N. Beacon St. Watertown, MA 02472 Quote Link to comment Share on other sites More sharing options...
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