Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 It definitely takes a village...and a village of angels are even better! I have two local schools to visit and I made my first call today.....and you are right about the confusion, just when you think you've got a handle on things something new pops up.....like that game " whack-a-mole " It definitely makes life interesting! Thanks again for all your help. Lori Myers Re: school for CHARGER's > > I was equally confused when Aubrie was 3 and 4. You'll get a handle on it > -- but even when you do, the confusion persists. I guess it's an ongoing > thing. Just when you get one thing figured out, something comes up that you > didn't notice before. Not encouraging -- but it's the truth. > > Regarding moving -- this list has taught me to appreciate what we have > that's good, change what I can improve, and accept the weaknesses. There > are folks here from all over the world -- and no one's got the perfect > situation. > > In our case, I truly think Aubrie's blessed with a whole choir of angels > watching over her. When we needed a signing aid, one moved into our town > (rural-- 5000 people). When that woman moved and our signing needs had > faded away, a fabulous woman moved to town and took the job. When she > needed the Perkins eval, her grandma planned a wedding a couple of hours > away (how many 60-yr-old grandmas get married -- and have the wedding in CT > when they live in Hilton Head?)-- the list goes on and on. > > Gotta run - Good luck with stuff- > Michele W > Aubrie's mom 6 yrs and 13 yrs > > > > > 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...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Lynn, It is good that is making decisions about her life like this. Kay school for CHARGER's > > > My daughter, , is four years old and she is attending a deaf and > hearing preschool (total communication). As a result of a horrific > accident at the school she now has a 1:1 aid and our " safety " issues have > been addressed. Our highest priority for her, in school, is communication > (she has a mild loss and a severe loss). She is having some behavior > problems--she loves to get in trouble and she runs people down with her > walker, doesn't stay in her chair at lunch (she is tube fed), and > basically doesn't follow the flow of the class--but there is growth and > improvement--it is just very slow. Now I wonder if I am just trying to > put a square peg in a round hole. Because it is a deaf school, the > teachers are trained to work with deaf children but not specialized to > work with " special " kids. I wonder if I am trying to force her to learn > in a way that she is not " wired " to learn. I wonder if she would > " blossom " if she were working with teachers that were trained to work with > kids that are delayed and have other issues besides deafness. OK, I'm > rambling! > > I know this group is a huge resource and have probably had these thoughts > and experiences. Please let me know what they are! This is so > frustrating! I wish I know what was best for my child! > > Lori Myers > Mom to (7), (4 CHARGE), and Emma (2) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 In 1960 when I started to school the public school system refused to let me go there. Back then they had the right to deny me going. So the alternative was the school for the blind. It worked out for me mainly because the classes were small and I could always sit in the front and from there I could hear the teacher. That made all the difference for me. We never had a class of more than 10 people and often there were less than 10 in a classroom. Kay Re: school for CHARGER's > > Ok, I have so many opinions on this one that it kind of frustrates me. It > is > so hard to read some questions that we had almost 15 years ago. There are > answers out there. Patty was first in a program for children with > multiple > disabilities. While this was good and they taught her how to walk we > found that > Patty's behavior was not great. She models others behaviors, and then > goes > above and beyond! So, we sent her to a school for the deaf. That was > tremendous > too. They taught her how to talk and to learn. But she was the only > " unique " child there. She was a misfit. > We brought her to our home district in kindergarten. So often we were > told about her " behaviors. " Patty was this square peg trying to fit into > a > round hole. Finally it got to the point that I had to tell these > " professionals " > that there wasn't enough consistency in behavior expectations. I told > them > that if she wasn't able to pretend to be a cowboy with one specialist and > could > for another that it sent too many mixed signals to her. They were forced > to > listen to me. Consistancy was what she needed then and still needs today. > I > also told them that I was tired of hearing daily about her negative > behaviors > and once a day I wanted to first hear something good for/with or about her > that > day. That changed peoples attitudes about Patty. Making them say > something > good made them see something good. I also told them they shouldn't fight > with > her and back her into a corner. It was then she would loose what the > discipline was about and would get into the disagreement. That continues > today. > > But more important than any of that was the understanding of Patty as a > whole > person. Too often there were " professionals " out there, or so they would > call themselves, who didn't have a clue about her. One part of Patty has > to be > involved with the rest. For example communication, vision hearing and > health > are all intertwined. It wasn't until she got connected with Perkins that > this > was understood. It was Perkins who could make recommendations and help > Patty's home district educators. Perkins could make the appropriate > recommendations. Sad to say, they didn't " have " to go forward with the > recommendations. The > law states they only have to take them into consideration! > > So, Perkins can and should be the model for all our children no matter > where > they are educated, being in a school for the deaf, for the blind, or as > Patty > did in regular Ed in her home district. It is the information that > everyone > needs. Within Perkins are other programs as well including Outreach and > DB-Link. All parents of children with CHARGE should know about them and > look into > it. See, I told you I was opinionated! > > Good luck with everything. Understanding the behavior and that it is > usually > a form of communication within itself is the first step in the education > of > our children. It will make sense as you go along. Making it make sense > to > others is what is hard. > > Bonnie, Mom to a 22, Patty CHARGE 20, and wife to > > > Quote Link to comment Share on other sites More sharing options...
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