Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Welcome! Our (now 20!) has always been very oral. In fact, prior to her first eval at Perkins in '89, her local teachers would have sworn that she had full blown pica (is that the right spelling?) The problem has eased considerably over the years, but her oral " needs " remain. I've always wondered whether this has/had to do with the problems with normal suckling in infancy, but then I come from a family of old fashioned Freudian psychiatrists who raised the issue almost from day one...Whatever the reason, however, 's need - and it has been a need - to have something in her mouth has been real and at times intense. The local school folks tried to satisfy her with rubber tubing. No solution. Instead, she found that some of her favorite toys were rubber and filled her need quite nicely. It's worked out over the years. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Welcome Meredith, I know how you feel about all of the procedures. My son Garland is the same way. About the self steming - chewing on himself or clothes, normal for DB. As you said it is sensory imput. The only thing we do is to redirect when possible. He is just wanting to be stimulated and that is the best for him, unfortunatly. We have chewy toys in boxes in different parts of the house. I have put several different types of toys in there for different textures. This helps. Garland has just finished 9 weeks of VitalStim Therapy and is more interested in food NOW that himself or his clothes. He is now eating more like an 18 month old would rather than a 36 month old. However he has made great progress. Best of luck. I do hope that his helps a little. mama to Garland 3 on 11-27. > Hello, > > My name is Meredith. I am the mother of a beautiful > 3.5 year old name Hayden who was diagnosed with CHARGE > about a year ago. From 3 months of age we knew about > his bilateral coloboma but did not find out about his > hearing loss (mod-severe) until he was 2. I have not > have to undergo many of the procedures I have read > about in this group so I feel very fortunate. I am > just relieved to finally have contact with people who > know what I am experiencing in the raising of a DB > child. > > I would like to ask a couple of questions if I may. > Does anyone elses child have a problem with chewing. > By this I mean that Hayden always has to have > something in his mouth: his sleeve, his shirt, my > shirt (which has resulted in some nips). For a while > he was obsessive about paper. I have a library full > of books with the corners of pages chewed off > (including board books!). I understand that this is a > primary sense for him because his vision and hearing > were compromised for a long time, but is there > anything I can do to wean this? > > Sincerely and much thanks in advance. > Meredith > > P.S. I have included a picture of Hayden (blond on > right) with his little brother Everett. > > ______________________________________________________________________ > Post your free ad now! http://personals.yahoo.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 I was a 911 Console member previously, but for various reasons was off the list for awhile. This afternoon I decided to resubscribe and look forward to the good information that comes across. I am a CEO (Communications Equipment Officer) for the Georgia State Patrol and have been with the agency for 4 years. I work at Post 42 in Rincon, which covers the 3 counties surrounding Savannah. My perspective is probably a bit different from many members due to the fact that we don't answer 911 calls at GSP. We do however deal with the 911 centers in our Post area on a daily basis and work closely with them. I am also a long-time radio hobbyist. Besides being amateur radio operator KF4LMT, I am also what some of you would consider a resident of " scannerland. " My years of scanning (not always public safety scanning) prior to becoming a dispatcher, in my opinion, were a help when I got this job. I still learn things while scanning that I apply to my work; it's almost like learning things from watching and listening to video from pursuits, traffic stops, etc. Mac McCormick III CEO 295 Georgia State Patrol, Post 42 Rincon NOTE: The opinions expressed in this email do not represent and are not intended to represent those of my employer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 We are from Crestview FLorida (near Pensacola). When is Whitney's birthday? Hunter's is July 26, 03. Do you have a definate diagonosis of Charge with Whitney? if so how did you get it and how old was Whitney when you got it? We were told by the geneticist that " I'm thinking Charge syndrome " but there isn't a test to give a definate Yes or no so that makes me think that Maybe Hunter has it. But I guess a geneticist would be the best one to say. But Hunter has not been given a definate digonosis just a " I'm thinking Charge syndrome " who knows. Quote Link to comment Share on other sites More sharing options...
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