Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Loved your reply. Kim > > > > > > > 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 , Autism is really just a label that describes altered development and how severe the alterations are determines the severity of the label. If the label helps figure out what to do to improve function or if it provides funding for services that would cause worse function f they didn't get it, then go for the label. Otherwise focus on what do the mannerisms tell you about what works for Luke and what doesn't. For example, the hands over the eyes. Is he light sensitive? I worked with a family the other day where the Mom just started to cry when I asked the child to adjust the lighting in the room and he made it totally dark - I then asked if his eyes ever hurt and he said all the time. This boy was 7 years old, had language and yet she had no idea and he had no idea that other people didn't feel that way. Observe if Luke covers his eyes in some kinds of light and not others. Are his pupils often very large, if so they are not filtering out the amount of light that hits the retina as needed to prevent pain. If he has had alterations in opportunities for using his mouth to eat, talk, etc then it impacts the muscles in the eye as well. These are not things that the medical doctors are accustomed to looking at, but you who knows Luke best figures out that if I keep the lights dim, he is able to function better. This doesn't help tell you if he has autism or not, but gives you an idea of how the behaviors can be simply telling you about what he is feeling or what he needs, not by choice, but because his body demands it. Kim > > > > > > > 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 6, 2007 Report Share Posted July 6, 2007 How long has it been since his vision has been evaluated? Poking of the eyes is common with people who at blind/visually imparied - they call it blindisms I believe (hope that's p.c.!) Maybe there were blindspots that were missed? Just another thing to think about. > > 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 6, 2007 Report Share Posted July 6, 2007 Dear Kim, This is such a great response‹I¹ve missed you! The idea of ³altered development² is a great description and one that can help so many people come to a better understanding of autism; not that it makes is all better, but this description, in my opinion, makes it less stigmatizing and might make a clearer path to planning and treatment. pam > > > > > , > > Autism is really just a label that describes altered development and > how severe the alterations are determines the severity of the label. > If the label helps figure out what to do to improve function or if it > provides funding for services that would cause worse function f they > didn't get it, then go for the label. Otherwise focus on what do the > mannerisms tell you about what works for Luke and what doesn't. > > For example, the hands over the eyes. Is he light sensitive? I > worked with a family the other day where the Mom just started to cry > when I asked the child to adjust the lighting in the room and he made > it totally dark - I then asked if his eyes ever hurt and he said all > the time. This boy was 7 years old, had language and yet she had no > idea and he had no idea that other people didn't feel that way. > Observe if Luke covers his eyes in some kinds of light and not others. > > Are his pupils often very large, if so they are not filtering out the > amount of light that hits the retina as needed to prevent pain. > > If he has had alterations in opportunities for using his mouth to eat, > talk, etc then it impacts the muscles in the eye as well. > > These are not things that the medical doctors are accustomed to > looking at, but you who knows Luke best figures out that if I keep the > lights dim, he is able to function better. This doesn't help tell you > if he has autism or not, but gives you an idea of how the behaviors > can be simply telling you about what he is feeling or what he needs, > not by choice, but because his body demands it. > > Kim > > On 7/5/07, proudmary730@... > > wrote: >> > >> > >> > >> > >> > >> > >> > 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 6, 2007 Report Share Posted July 6, 2007 I would be very interested to know this information as well. About a year ago, I asked my son's primary pediatrician (a craniofacial specialist, who works with most of the CHARGE kids at the hospital so you would think she would know about this) about how autisim is differentiated from " CHARGE Behavior. " At the time, I was concerned about Evan's obcession with fans and lights. I was asking about the need for a consult with the department that sees kids with autism (I'm blanking on the name now--I thought it was neurodevelopmental). She basically blew me off. She printed off a list of the criteria for a diagnosis of autism--most of which were not applicable to a 1 year old--and said the interest in fans was normal for his developmental age (I have lots of friends with kids around the same age as Evan, so I knew his level of interest in the fan or lights or his hands was a bit beyond the range of " normal " ). I know kids that have gotten an autism diagnosis as young as 2, so I know that list of criteria cannot be the only one. I realize that Evan most likely does not have autism in addition to CHARGE, but I would think a consult with someone who sees autism all the time could only be helpful... Evan does the hand flapping, and will kick his feet too. He still loves fans and lights, his eye contact is variable (getting better though), he is starting to come to us when we sign " come " to him, and he pokes his left eye too. (mom to Evan, 2 years old in 9 days) proudmary730@...> wrote: 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 6, 2007 Report Share Posted July 6, 2007 I would be very interested to know this information as well. About a year ago, I asked my son's primary pediatrician (a craniofacial specialist, who works with most of the CHARGE kids at the hospital so you would think she would know about this) about how autisim is differentiated from " CHARGE Behavior. " At the time, I was concerned about Evan's obcession with fans and lights. I was asking about the need for a consult with the department that sees kids with autism (I'm blanking on the name now--I thought it was neurodevelopmental). She basically blew me off. She printed off a list of the criteria for a diagnosis of autism--most of which were not applicable to a 1 year old--and said the interest in fans was normal for his developmental age (I have lots of friends with kids around the same age as Evan, so I knew his level of interest in the fan or lights or his hands was a bit beyond the range of " normal " ). I know kids that have gotten an autism diagnosis as young as 2, so I know that list of criteria cannot be the only one. I realize that Evan most likely does not have autism in addition to CHARGE, but I would think a consult with someone who sees autism all the time could only be helpful... Evan does the hand flapping, and will kick his feet too. He still loves fans and lights, his eye contact is variable (getting better though), he is starting to come to us when we sign " come " to him, and he pokes his left eye too. (mom to Evan, 2 years old in 9 days) proudmary730@...> wrote: 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 6, 2007 Report Share Posted July 6, 2007 , My son did the same as you are describing for a few years and then when he could talk around 4 years old started to tell me he had a headache. It turned out he had abdominal migraines. I had every test that could be done to rule out any other reason for the headaches. But, it did explain his eye pain because that comes along with it sometimes. He was having them probably from the start. He is also extremely sensitive to light and changes in light as well as can’t see depth. I only found that out because even after balance issues had improved he would walk down stairs and curbs as if he was walking off a cliff. We saw a low-vision specialist how could confirm a physical problem in the eye that would be causing it. We put prisms in his glasses and this helped him see where things would end, like the floor. Even today, he prefers to hold a hand in an unfamiliar setting. My neurologist told us always to explore all other medical reasons before assuming it’s just behavioral. In my son’s case behavioral things like that came from something hurting him. Most of the time I have found there was an underlying cause of the behavior. Also, he has always had “autistic-like” behavior, but is clearly not autistic. The lack of eye-contact, not socializing etc. came from his vision and hearing deficits and socialization had to be learned. He is still learning how to be social. He is very engaging though. My son doesn’t have major vision issues, but, does have Colobomas in each eye of the retina. Although they are “not suppose to interfere with his sight” as the opthamologist said, he does see shadows that scare him depending which way he looks. He can verbalize this so that is how I know. Also, when he was born up until he was 3 he had a moderate to severe hearing loss, and then suddenly his hearing dropped to profound in both ears. I am not sure if it was always profound because I found we really couldn’t get a good sense of what his hearing was like until he could go in the booth to do a behavior test. If you didn’t know , you would think he had excellent hearing, as he thinks he does as well, but he doesn’t. Anyway, hope this helps. Debbie Matasker mom to 10 w/CHARGE, 12, andra 8 Re: Behavior issues 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.caringbr http://www.caringbridge.org/mn/lukejoseph> idge.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. http://kauffmanlak.blogspot.com/> 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 HI , A developmental pediatrician is the one who usually looks at neurodevelopmental disorders. All kids may do those things some of the time, but not at the expense of everything and everyone else. For example, when you walk in the room, typically the child would rather look at you than the fan, but when there are visual processing issues, they are more likely to look at the fan - faces are too complex. Does that mean they need to be evaluated for autism or does it mean they need someone who understands visual processing? I think it is important when dealing with CHARGE that we look beyond acuity and decibels and look at how are children function visually and auditorally. A lot of help for those difficulties come from specialists out of the education field and therapeutic approaches that focus on neurodevelpment. Kim > > > > > > > I would be very interested to know this information as well. About a year > ago, I asked my son's primary pediatrician (a craniofacial specialist, who > works with most of the CHARGE kids at the hospital so you would think she > would know about this) about how autisim is differentiated from " CHARGE > Behavior. " At the time, I was concerned about Evan's obcession with fans and > lights. I was asking about the need for a consult with the department that > sees kids with autism (I'm blanking on the name now--I thought it was > neurodevelopmental). She basically blew me off. She printed off a list of > the criteria for a diagnosis of autism--most of which were not applicable to > a 1 year old--and said the interest in fans was normal for his developmental > age (I have lots of friends with kids around the same age as Evan, so I knew > his level of interest in the fan or lights or his hands was a bit beyond the > range of " normal " ). I know kids that have gotten an autism diagnosis as > young as 2, > so I know that list of criteria cannot be the only one. I realize that Evan > most likely does not have autism in addition to CHARGE, but I would think a > consult with someone who sees autism all the time could only be helpful... > Evan does the hand flapping, and will kick his feet too. He still loves fans > and lights, his eye contact is variable (getting better though), he is > starting to come to us when we sign " come " to him, and he pokes his left eye > too. > > (mom to Evan, 2 years old in 9 days) > > proudmary730@...> wrote: > 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 6, 2007 Report Share Posted July 6, 2007 HI , A developmental pediatrician is the one who usually looks at neurodevelopmental disorders. All kids may do those things some of the time, but not at the expense of everything and everyone else. For example, when you walk in the room, typically the child would rather look at you than the fan, but when there are visual processing issues, they are more likely to look at the fan - faces are too complex. Does that mean they need to be evaluated for autism or does it mean they need someone who understands visual processing? I think it is important when dealing with CHARGE that we look beyond acuity and decibels and look at how are children function visually and auditorally. A lot of help for those difficulties come from specialists out of the education field and therapeutic approaches that focus on neurodevelpment. Kim > > > > > > > I would be very interested to know this information as well. About a year > ago, I asked my son's primary pediatrician (a craniofacial specialist, who > works with most of the CHARGE kids at the hospital so you would think she > would know about this) about how autisim is differentiated from " CHARGE > Behavior. " At the time, I was concerned about Evan's obcession with fans and > lights. I was asking about the need for a consult with the department that > sees kids with autism (I'm blanking on the name now--I thought it was > neurodevelopmental). She basically blew me off. She printed off a list of > the criteria for a diagnosis of autism--most of which were not applicable to > a 1 year old--and said the interest in fans was normal for his developmental > age (I have lots of friends with kids around the same age as Evan, so I knew > his level of interest in the fan or lights or his hands was a bit beyond the > range of " normal " ). I know kids that have gotten an autism diagnosis as > young as 2, > so I know that list of criteria cannot be the only one. I realize that Evan > most likely does not have autism in addition to CHARGE, but I would think a > consult with someone who sees autism all the time could only be helpful... > Evan does the hand flapping, and will kick his feet too. He still loves fans > and lights, his eye contact is variable (getting better though), he is > starting to come to us when we sign " come " to him, and he pokes his left eye > too. > > (mom to Evan, 2 years old in 9 days) > > proudmary730@...> wrote: > 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...
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