Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi Tim, Thanks for the information....We just had evaluated and they were leaning towards to an auditory processing disorder...He has great difficulty taking information from the over head or from the board and applying it to the paper at his desk....Our specialist who works with children with processing disorders has stated does not fit into any of the 4 profiles for CAPD.. It was frustrating because our former director wanted to put an ADD or ADHD label on him. This information makes more sense... had difficulty learning to walk.. Again thank you for this information it will help Ellen mom to 7 Tim Hartshorne wrote: Hi Bonnie, You can make a good guess that the semi circular canals are missing or damaged by the balance problems and difficulty learning to walk. You can confirm that with an MRI of the temporal bones, but you would probably need a medical reason to get that done. It is the vestibular sense from the semi circular canals that allows you to look at an object while you move your head. Without them, every time your head moves you can lose sight of the object. So it will take a lot of concentration to keep everything focused. Our kids seem to learn to do it, but I imagine it takes a lot of energy and effort. Best, Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Vicky, Bryce's audiological history always baffles the audiologists too. They believe that neurological fatigue must explain part of the bizarre results. Meaning, that his neurological system is weak and sometimes the sounds get connected better than others creating an inconsistency. His system is getting stronger and more consistent slowly over time and with practice. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 I don't see again how adjustment to the visual near/far can be leaning to auditory processing--did you mean visual processing??? To me it suggests a problem with visual accomodation. The lens of the eye has a muscle attached, which helps the lens to adjust for near or distance vision in order to have a clear view of the object. When teaching the DB course, always a jolt of humour during cow eye disection is you can tell where the cow was looking before slaughter, by the shape of the lens --squishy and long like an egg or round like a grape. The lens actually changes shape depending on if you look near or far. Enough of that, but we need to also remember what influences the mov't of these muscles? cranial nerves, eye reflexes....and in CHARGE they often have been showed to be compromised. ann gloyn Education Specialist Canada > Hi Bonnie, > > > > You can make a good guess that the semi circular canals are missing or > damaged by the balance problems and difficulty learning to walk. You can > confirm that with an MRI of the temporal bones, but you would probably need > a medical reason to get that done. It is the vestibular sense from the semi > circular canals that allows you to look at an object while you move your > head. Without them, every time your head moves you can lose sight of the > object. So it will take a lot of concentration to keep everything focused. > Our kids seem to learn to do it, but I imagine it takes a lot of energy and > effort. > > > > Best, > > Tim > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Hi Vicky, The situation you describe with is very interesting. I think the ABR is a good idea. I think processing problems are very common with CHARGE, but the exact source of them is hard to identify. My own guess is that our kids have a regulatory disorder so that they have a great deal of difficulty with their arousal levels, or reaction to stimuli. I believe their threshold for arousal probably varies from time to time, as does the way they cope when they do react to stimulation. So you could hypothesize that hears OK, but does not respond to language unless it gets into him at some threshold level that keeps changing. Once he does register the sound, he may choose to react by soaking it up (so to speak) or by trying to avoid it. Does that make sense? Best, Tim Hartshorne (father of ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Hi Tim, I spoke with our deaf/blind specialist here about the vestibular and ocular relationship you spoke of in a previous post.... She had never heard of that connection before...So I have spent several days trying to find some written material to support that...with no luck...It make so much sense to me that this is the issue with my son...We have a PPT soon and would like to implement some strategies for this...Any ideas? Is it possible for you to point me in the direction of some articles?? I've spoken with 's team and they are very interested in this...It would explain a lot of behavior ...often the teacher felt was not paying attention....and that takes additional time especially doing work requiring getting information from the board and writing it on the paper. He needs to look back and forth several times before getting the task at hand done.....Our previous director( the person who told me that in order to qualify as deaf/blind needed to be totally deaf and totally blind) was convinced that this behavior was indicative of ADD or ADHD....She wanted tested for that...Our pediatrician clarified that with her....The director is no longer with us and we are getting a fresh set of eyes to the team...I would like to introduce vestibular and ocular relationship to the team. Any info will be helpful. Thanks Ellen mom to ...7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Ellen- Aubrie has the same trouble copying from the board. Our DB specialist observed this behavior in the classroom on her last visit -- start of 1st grade. This is not something they had ever done in Kindergarten. So our solution is that the aide writes whatever the teacher writes on the board on a white dry erase board at Aubrie's desk. Then she has the material from the board closer. There was never a question of this being anything other than a visual issue. Michele W Aubrie's mom 6 yrs (7 on Nov 29!) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Kim- You have such skill in making these abstract ideas concrete for me. The world of our kids is so fascinating and you're examples and explanations really help me to understand . Michele W > > I agree with him wanting to enjoy the world. With deafblindness we know > that first we must reach him in his world, then provide a safe bridge out. > I like to remind parents that the child must have control of how quickly > they navigate the bridge and if they need to step back into their world at > times, if they are stressed or overwhelmed. You sense his cues, when > he can > be led out and when you need to provide the safe place for him to retreat. > Trying to force them out can cause further retreat. I think you know > > and know his cues and you are without even knowing it helping him navigate > his bridge. > > Kim L > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Thanks and glad it helps. Kim Re: re: question for Tim Kim- You have such skill in making these abstract ideas concrete for me. The world of our kids is so fascinating and you're examples and explanations really help me to understand . Michele W > > I agree with him wanting to enjoy the world. With deafblindness we know > that first we must reach him in his world, then provide a safe bridge out. > I like to remind parents that the child must have control of how quickly > they navigate the bridge and if they need to step back into their world at > times, if they are stressed or overwhelmed. You sense his cues, when > he can > be led out and when you need to provide the safe place for him to retreat. > Trying to force them out can cause further retreat. I think you know > > and know his cues and you are without even knowing it helping him navigate > his bridge. > > Kim L > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
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