Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 I have a good friend with a 5 year old daughter who has CHARGE. She doesn't have access to the internet very often, so I am writing for her. The school thinks that she also has autism. I was wondering if there are ways to find out if this is autism or what is going on. Do other children with CHARGE have autism? The little girl's language is very delayed and she has a lot of behavior issues. She also has 'stims' like flapping her hands and flicking her hands in front of lights. She has problems focusing on any activities for any length of time at all. My friend wonders if it is ADD or something like that. Any change in their plans seems to be really upsetting, so transitions are a big issue. Is there any resource or information that could help my friend sort out how to address the issues at home and at school? She's worried about frustration and the fact that her daughter doesn't communicate with words but always pulls her hand to the video or toy that she wants. Her preschool group of teachers doesn't seem to know how to address her behaviors, frustration, and difficulty with language. It seems like they want to help but really don't know how. The little girl is deaf and goes to a preschool class for kids with hearing impairment. Otherwise, she is doing pretty well with health issues. She had heart surgery when she was a baby and recovered very nicely. Thanks for any ideas, resource suggestions... betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 what other aspects of charge has she got thats allways one to consider theres lots of aspects to look at im a charger ive got ocd have they looked into that where r u all from hugs ellen inaus > > I have a good friend with a 5 year old daughter who has CHARGE. She > doesn't > have access to the internet very often, so I am writing for her. The > school > thinks that she also has autism. I was wondering if there are ways to find > out if this is autism or what is going on. Do other children with CHARGE > have autism? > > The little girl's language is very delayed and she has a lot of behavior > issues. She also has 'stims' like flapping her hands and flicking her > hands > in front of lights. She has problems focusing on any activities for any > length of time at all. My friend wonders if it is ADD or something like > that. Any change in their plans seems to be really upsetting, so > transitions are a big issue. > > Is there any resource or information that could help my friend sort out > how > to address the issues at home and at school? She's worried about > frustration > and the fact that her daughter doesn't communicate with words but always > pulls her hand to the video or toy that she wants. > > Her preschool group of teachers doesn't seem to know how to address her > behaviors, frustration, and difficulty with language. It seems like they > want to help but really don't know how. The little girl is deaf and goes > to > a preschool class for kids with hearing impairment. > > Otherwise, she is doing pretty well with health issues. She had heart > surgery when she was a baby and recovered very nicely. > > Thanks for any ideas, resource suggestions... betsy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Hi Betsy, Many children with sensory deficits exhibit autistic-like behavior like you have described. However, they don't necessarily have autism--a lot of these behaviors are driven by the lack of hearing, vision, vestibular system, etc., coupled with language challenges. There are at least a couple kids with CHARGE that I know of that DO have autism also, though. Those parents may be able to tell you more about how their children were diagnosed. We have a 5-year-old daughter who sometimes exhibits the types of behaviors and activities you describe. I had questioned a couple years ago whether she might also have autism, too. These mannerisms were more present in her then, although she didn't exhibit some of the personality traits of autism. But after talking in depth with her developmental pediatrician and having her observed by a couple of pediatric psychologists who were familiar with deafblind behaviors, it was decided that she didn't have true autism, but just some autistic-like tendencies brought on by sensory deficits and lack of a formal communication system. What type of communication system does the family and school use with your friend's daughter? Our daughter uses a total communication system (pictures, sign, gestures, voice). Pictures made a big difference for her, particularly at school. She grasped this concept quickly, and it's given her a way to know what's expected of her, to request things, etc. She also began using a calendar system this past year at school, which helped her tremendously with transitions. She still has problems adjusting when something happens out of the normal routine, but it's much better than it used to be. We've signed with her since she was a baby, but she really just started taking off with receptive sign in the past six months. I believe she's been taking it in the whole time, but it just took a long time for it to " click " with her and for her to assign meaning to the signs. She uses very little sign expressively, though--she still mostly gestures and pulls/pushes you to show what she wants. Still, she does pretty good at communicating her wants and needs, even with very little " formal " communication at this point. does get easily frustrated, though, when you don't understand her, or she doesn't get what she wants, or her routine gets disrupted. She often acts out in these types of situations--hitting, jumping up and down, clenching her fist and jaws, etc. Again, this is related to a limited communication system, and can be sometimes be very challenging to deal with. We sign " no " to her in these instances and try to gently restrain her in some way (give her a bear hug, or deep massage her shoulders, etc.) to try and relax her body. It can be tough to deal with, though--probably the biggest challenge we are dealing with right now. I hope your friend can get some help for her daughter through the school. I think the first place to start might be a total communication system (particularly pictures, as a starting point), if one isn't already being used, and a calendar system. Good luck! , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- Ready for the edge of your seat? Check out tonight's top picks on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 We have questioned autism for a long time with Luke. How do you rule out autism in CHARGE kids? Luke does not have major problems with his vision and hearing (at least that we're aware of) but he does have vestibular problems. He struggles with behaviors and communication problems too. Luke does the hand flapping and finger flicking that's been talked about by other parents and has very poor eye contact and is resistant to change, but the biggest behavior challenge lately has been his need to cover and sometimes push on his eyes. He mostly holds the back of his hand over his right eye, but lately he's added in pushing on his left eye at the same time. He's definitely stressed out when he does this but I can't figure out what's causing the stress. We really need major help in figuring this out because he can't learn anything this way and some days he does this a lot. Does anyone know what type of expert would help us with this problem? Luke sees a lot of doctors but nobody seems to know what to do about it. We've had his eyes checked and the opthalmologist doesn't see anything causing it so we're assuming it's all behavioral. Luke has a trach so he can't really even cry when he wants to either. Luke can be such a fun happy boy and it makes me so sad when something is causing him pain or stress but he can't tell me what and there's nothing I can do about it. , Luke's mom, 2 1/2 w/CHARGE http://www.caringbridge.org/mn/lukejoseph > > > > > > > > > > > > > > Hi Betsy, > > > > Many children with sensory deficits exhibit autistic-like behavior like you > > have described. However, they don't necessarily have autism--a lot of these > > behaviors are driven by the lack of hearing, vision, vestibular system, > > etc., coupled with language challenges. There are at least a couple kids > > with CHARGE that I know of that DO have autism also, though. Those parents > > may be able to tell you more about how their children were diagnosed. > > > > We have a 5-year-old daughter who sometimes exhibits the types of behaviors > > and activities you describe. I had questioned a couple years ago whether she > > might also have autism, too. These mannerisms were more present in her then, > > although she didn't exhibit some of the personality traits of autism. But > > after talking in depth with her developmental pediatrician and having her > > observed by a couple of pediatric psychologists who were familiar with > > deafblind behaviors, it was decided that she didn't have true autism, but > > just some autistic-like tendencies brought on by sensory deficits and lack > > of a formal communication system. > > > > What type of communication system does the family and school use with your > > friend's daughter? Our daughter uses a total communication system (pictures, > > sign, gestures, voice). Pictures made a big difference for her, particularly > > at school. She grasped this concept quickly, and it's given her a way to > > know what's expected of her, to request things, etc. She also began using a > > calendar system this past year at school, which helped her tremendously with > > transitions. She still has problems adjusting when something happens out of > > the normal routine, but it's much better than it used to be. We've signed > > with her since she was a baby, but she really just started taking off with > > receptive sign in the past six months. I believe she's been taking it in the > > whole time, but it just took a long time for it to " click " with her and for > > her to assign meaning to the signs. She uses very little sign expressively, > > though--she still mostly gestures and pulls/pushes you to show what > > she wants. Still, she does pretty good at communicating her wants and > > needs, even with very little " formal " communication at this point. > > > > does get easily frustrated, though, when you don't understand her, or > > she doesn't get what she wants, or her routine gets disrupted. She often > > acts out in these types of situations--hitting, jumping up and down, > > clenching her fist and jaws, etc. Again, this is related to a limited > > communication system, and can be sometimes be very challenging to deal with. > > We sign " no " to her in these instances and try to gently restrain her in > > some way (give her a bear hug, or deep massage her shoulders, etc.) to try > > and relax her body. It can be tough to deal with, though-- probably the > > biggest challenge we are dealing with right now. > > > > I hope your friend can get some help for her daughter through the school. I > > think the first place to start might be a total communication system > > (particularly pictures, as a starting point), if one isn't already being > > used, and a calendar system. > > > > Good luck! > > > > , mom to (5) > > http://kauffmanlak.blogspot.com/ > > > > --------------------------------- > > Ready for the edge of your seat? Check out tonight's top picks on Yahoo! > > TV. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2007 Report Share Posted July 7, 2007 Thanks for all the feedback on the eye poking with Luke. There's definitely some possibilities to consider. Quote Link to comment Share on other sites More sharing options...
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