Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 This reminds me of the importance of sign in Aubrie's early development. She is now oral and we are discussing an informal sign language club to give her those skills for backup with her highly unintelligible speech. As a toddler, she signed her wants and needs long before she could say them. She also signed key words in stories and songs so that I could see her making connections between concepts in books and real life, etc. It was so vital during that time -- can't imagine how she would have developed without any communication til she could talk! When she began preschool at age 3, she was still using a combination of sign and speech. By kindergarten, she was totally verbal. As she gained the verbal skills, she slowly dropped the signs. First, signs were used for words she couldn't say. Then for words she said but we couldn't understand. Finally, they weren't needed anymore because we either understood or she gave verbal clues until we got it. Here's a scenario that demonstrates the importance of even a little sign. In preschool, when she was pretty much nonverbal, the teacher read a story about boats. Aubrie made her sign for her grandma. Her aide knew the sign and knew that her grandma lived in Hilton Head and had a boat. So the teacher was able to say, " Oh, yes, Aubrie's grandma has a boat. " If they didn't know her sign, they would have ignored her attempt at communication. The connection between the story and her real life would have been missed, meaning she may not have developed that concept of boat to another level, and she may not have bothered to sign next time. Same thing when they read a story about mice. Aubrie could sign that word and enjoyed the book " The Little Mouse, The Big Hungry Bear, and the Red Ripe Strawberry " so she could use her limited sign to comment on the story in class. Maybe the teacher would ask who was next on the page or whatever. If they hadn't been able to recognize her sign, the teachers would have missed that she knew the story sequence and would not have reinforced her attempt at communication. Michele W wendycamp_93103 wrote: > > Sharon- our son , who is now 2.5, has made incredible strides in > communication using the combination of sign and spoken language. I > don't have any 'hard' evidence per se, but suffice to say he has > blown away his speech therapist and everyone else involved with his > care in the progress he has made. Shame on anyone who says signing > delays speech! As of age 2, was able to recite the alphabet and > sign it at the same time. We started with the basics when he was > about 6 months old, and the fact that he was able to communicate his > basic needs by 1-1.5 years old saved us so much frustration that > parents of hearing children go through in the interim developmet > phases! > I highly recommend signing & verbal communication, even to my > friends with hearing kids. I know gets a huge kick out of > learning both the sign and the spoken word, and it is also a great > help to have sign in a noisy environment. > > > mom to , 2.5 and wife to Bo > > > Sharon here from West Oz, > > I've just searched the archives and don't seem to be able to > locate > > the great messages that were sent about 6 months ago regarding > using > > sign language with spoken language to support and supplement > > communication development. This approach seems to get the best > > results for many children with CHARGE, as the focus is on > > communication and not on a particular method. Unfortunately, the > old > > 'signing versus oral' argument is still alive and well down under, > > with some professionals advising parents not to use sign saying it > > will deter speech...of course these people have no experience with > > children with CHARGE or children who are deafblind, but that > doesn't > > stop them from giving advice! > > > > If anyone has advice regarding the value of combined signing and > > spoken language, I can pass it on to a family here, and it would > be > > greatly appreciated. Coming from other parents will be valuable > for > > this family. Many thanks. This list is the best! > > > > > > Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome > Canada information and membership, please visit > http://www.chargesyndrome.ca, or email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at www.chargesyndrome.org or by calling > 1-. > > > ------------------------------------------------------------------------ > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Michele, Patty misses stuff and doesn 't know it. But then again she also knows when she misses stuff. It can be confusing for us all. When she often has to say what, huh, could you repeat that then I know for sure she isn't hearing well. But she used to hide not hearing well in the classroom because people would she she wasn't paying attention, that she wasn't trying, or she hid it because none of the other kids continually asked the teacher for repetition. Patty advocates for her hearing by doing things such as telling the teacher where to stand so she can hear yet she still misses things even now. Then again when she is answering sure, yea, no,... I know she isn't really hearing. I ask her what was the question. Often she didn't hear and is trying not to seem, well, slow? So she'll hide it. How does she know when she doesn't understand to when she can't hear? It is learned. I have an idea on how to get Miss Aubrie to learn some signs. Why don't you and Aubrie learn a new sign each week so that when you get to the confrence she can sign with some of her friends, including us! Remind her Patty hears, talks and does everything everyone else does, signing just helps her get smarter. And my goodness, it helps her spelling tremendously! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Michele, Don't feel guilty. Ask. Yea, that's coming from the guilt pro herself. Good advice if I could just listen to it! Hugs, Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Yuka- Interesting. The difference for Aubrie, I think, is that she has near normal hearing in one ear. If she had bilateral severe loss, then I don't think there would be opposition to signing. I'm saving all these posts for later reference as I continue to contemplate... Michele W Yuka Persico wrote: > postscript: > > 's audiogram shows severe loss, yet he functions very high with his > residual hearing as evidenced in his use of language and communication > ( " hearing style preferences " ). Be that as it may, there was never a > question of providing him a total communication environment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Absolutely. Again -- I know this, but I don't always remember. Another one to save... Thanks- Michele W Kim Lauger wrote: > Michele, > > I know we have talked on list about IDEA and optimal functioning. > When you are ready to tackle the signing issue with the school, remember > that this is not about optimal functioning for Aubrie, it is about > access to > information, information that the other kids have access to, but she does > not due to her vision and hearing loss, no matter how mild they might seem > to others. > > Keep these e-mails, jot down instances of her weird responses, > anything that > indicates she is missing info. It is not like it is some gift they are > going to give her so she can " be the best " , but simply an opportunity to > access what others take for granted. People without these losses or at > least living with it, cannot begin to imagine the amount of work our > children put into compensating. > > Kim L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Patty- You are my example and my inspiration for what Aubrie can become. Knowing how sign has helped you is a great motivation for me. Now the question is how to make it happen. Feel free to chime in with any suggestions or thoughts as this discussion continues. Sometimes, I don't even know what questions I need to ask until one of you guys answer it! Michele W Brisk913@... wrote: > , > it is very impotent to use sign. For me its very importent bacuase it > helps > me with alot of things. I use it as much as possible and it helps fill > in the > blanks. for me I thank god I know sign. if you have any questions feel > free to > ask. Smile and hugs! > -Patty 20 Charge > > > > ------------------------------------------------------------------------ > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 In my experience, at our school, a child like Aubrie would be receiving sign language services, especially if there is any possibility for hearing loss. As a matter of fact, there is a deaf family who has one hearing daughter and one deaf daughter and they received deaf services for their hearing daughter because they were concerned her hearing may deteriorate. She is still hearing, and she goes to Riverside ) I really feel Aubrie should be receiving services - I do not think it is an option or preference, it is her right. Yuka Original Message: ----------------- From: Michele Westmaas momonamission@... Date: Tue, 08 Feb 2005 16:12:01 -0600 To: CHARGE Subject: Re: communication Yuka- Interesting. The difference for Aubrie, I think, is that she has near normal hearing in one ear. If she had bilateral severe loss, then I don't think there would be opposition to signing. I'm saving all these posts for later reference as I continue to contemplate... Michele W Yuka Persico wrote: > postscript: > > 's audiogram shows severe loss, yet he functions very high with his > residual hearing as evidenced in his use of language and communication > ( " hearing style preferences " ). Be that as it may, there was never a > question of providing him a total communication environment -------------------------------------------------------------------- mail2web - Check your email from the web at http://mail2web.com/ . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Gosh, I agree, but I'm still not sure how to go about getting it done. I'll have to check with my DB specialist and our deaf specialists. They have been wonderful advocates for Aubrie in the past and they know the system in IL. Michele W yuka@... wrote: > In my experience, at our school, a child like Aubrie would be receiving > sign language services, especially if there is any possibility for hearing > loss. As a matter of fact, there is a deaf family who has one hearing > daughter and one deaf daughter and they received deaf services for their > hearing daughter because they were concerned her hearing may deteriorate. > She is still hearing, and she goes to Riverside ) I really feel Aubrie > should be receiving services - I do not think it is an option or > preference, it is her right. > > Yuka > > > > Original Message: > ----------------- > From: Michele Westmaas momonamission@... > Date: Tue, 08 Feb 2005 16:12:01 -0600 > To: CHARGE > Subject: Re: communication > > > > Yuka- > Interesting. The difference for Aubrie, I think, is that she has near > normal hearing in one ear. If she had bilateral severe loss, then I > don't think there would be opposition to signing. I'm saving all these > posts for later reference as I continue to contemplate... > > Michele W > > Yuka Persico wrote: > > > postscript: > > > > 's audiogram shows severe loss, yet he functions very high with his > > residual hearing as evidenced in his use of language and communication > > ( " hearing style preferences " ). Be that as it may, there was never a > > question of providing him a total communication environment > > > > -------------------------------------------------------------------- > mail2web - Check your email from the web at > http://mail2web.com/ . > > > > > Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome > Canada information and membership, please visit > http://www.chargesyndrome.ca, or email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at www.chargesyndrome.org or by calling > 1-. > > > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Here's what confuses me -- and, Pam, please jump in here. The Perkins staff agree that sign would be helpful, but didn't think it's something to push for in the classroom. They do think an informal sign club would help. But is that enough? Or is that just a start? I don't know. I can see that sign would widen things for Aubrie too. She could " hear " even in loud crazy surroundings, she could communicate with deaf peers and her CHARGE peers. She's definitely at a deficit when going to the conference if she can't sign with her peers there! She borders on the deaf and hearing world. Having both sign and speech would bridge those worlds for her. I can pretend she's just a regular hearing person, but that is denying the hearing impaired side of her. Technology is a whole 'nother thing. I don't know where to begin! Both our school and Perkins agree that she's not ready for traditional keyboarding yet. That means we need special equipment (intellikeys) and programs (to go with it and Clicker4). That's all fine, but then I don't have it at home for further practice. I feel guilty asking for it cuz I don't work with her on the computer now like I always intended to. But if she had something that she could be successful at independently, then she needs it at home to use just like a typical kid uses paper and pencil and computer independently at home. Help! I'm growing weary just at the thought of it all! Michele > > > > ------------------------------------------------------------------------ > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2005 Report Share Posted February 8, 2005 Michele, I can just see you reading this and getting to the bottom and reading technology too and pulling your hair out. I know you are already looking at technology stuff, but I did have to laugh when I read this. There does seem to be always one more thing. Luckily our kids seem to thrive in spite of us, so we don't have to do it all now. They would burn out as much as we would. Kim > > Michele, > > I can't tell you how important Patty's post is. I too thank God. You know, > she always seemed so " normal " and I just felt she missed so much. I was > treated like I was a dip when I asked for more assistance. We were told her > hearing was too good, her vision was too good, her health was too good, you > know the > routine. Bunch of junk if you ask me. No one understood until the staff at > Perkins put her together as a whole person. > > Patty has disabilities. That isn't who she is, it is what she has to deal > with. She was born with them and they will never go away. Never. She > shouldn't > have to " fit. " Patty spent so much time trying to act and be treated as > " normal " that she missed too much. It gets harder when they get older. And > when > the work load increases. Then there are attitudes. When she learned how to > sign even some family members were kind of embarrassed when we signed in > public. > They got over it fast when they saw how it helps her and how people interact > with her as if she were Cool! Patty has learned so many ways to modify > things to make her life good. Signing is one of them. Plus, it didn't > separate > her from the " normal " world. She luckily has speech for that. Now that she > signs instead of limiting her it actually widened her life. It also gives her > confidence in who she is. Weird, but true. > > By the way, signing is only one important thing. Have you looked at > technology? I think that is even more important! > > Bonnie, Mom to Kris 22, Patty CHARGE 20 and a whiz with the Internet, and > wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Michele, You are still the expert on Aubrie. You will have to figure out what you want to push for. Are you pushing for her to have time in her day to learn ASL? Are you asking for her to have a full time interpreter? How much is she missing now? Probably not enough to make a huge impact now. Recognizing that it will be harder to catch it all as she gets older gives reason to head in that direction now, but realizing you both don't have to be fluent tomorrow. A sign club can be a way for her to learn sign as well as her peers, or a sign time in her classroom. My kid's K and 1st grade teachers signed with all the kids. As her signing ability improves she will let you know how much she is needing it. I still go with trust your instincts and Aubrie's. The 2 of you do know what is right for you. Kim L > > Here's what confuses me -- and, Pam, please jump in here. The Perkins > staff agree that sign would be helpful, but didn't think it's something > to push for in the classroom. They do think an informal sign club would > help. But is that enough? Or is that just a start? I don't know. > > I can see that sign would widen things for Aubrie too. She could " hear " > even in loud crazy surroundings, she could communicate with deaf peers > and her CHARGE peers. She's definitely at a deficit when going to the > conference if she can't sign with her peers there! She borders on the > deaf and hearing world. Having both sign and speech would bridge those > worlds for her. I can pretend she's just a regular hearing person, but > that is denying the hearing impaired side of her. > > Technology is a whole 'nother thing. I don't know where to begin! Both > our school and Perkins agree that she's not ready for traditional > keyboarding yet. That means we need special equipment (intellikeys) and > programs (to go with it and Clicker4). That's all fine, but then I > don't have it at home for further practice. I feel guilty asking for it > cuz I don't work with her on the computer now like I always intended > to. But if she had something that she could be successful at > independently, then she needs it at home to use just like a typical kid > uses paper and pencil and computer independently at home. > > Help! I'm growing weary just at the thought of it all! > > Michele > >> >> >> >> ------------------------------------------------------------------------ >> * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Kim, Yes, it is challenging enough for parents to do what needs to be done on a daily basis, without professionals continually pushing their own wheelbarrows for what parents 'should' be doing! Parents are faced with difficult decisions everyday, and with children with CHARGE, often these decisions are of a medical nature which must take priority...how do you then try to take on board everything suggested (pushed!) by the speech therapist, the physio, the OT, audiologist, orthoptist, ENT, teacher, social worker, specialists, etc. etc. etc. Hey, we know you guys are good, but you'd have to be Houdini to do it all at once! Sharon from West Oz >Michele, > >I am glad my words helped and I hope people who have asked questions about >how to " get parents to do something " notice. I am very sensitive to >recognizing how badly we all want to do EVERYTHING for our children, but >reality is we can't. We can only take on so much at once and we need to be >recognized for that, not judged for what we have not done. Information >about other options that we can look to in the future is helpful, as long as >it is not presented in a way that says we have let our kids down for not >having done it or mastered it or whatever long ago. We truly all do love >our kids and do our best. > >Hugs to you. When I look at where Aubrie is at now, I know you have done an >awesome job. > >Kim L > > > > >> >> Kim- >> Thank you, thank you, thank you. Just what I needed to hear. I know >> Aubrie is missing info. It's apparent in her questions and weird >> understandings of things. But I can't fill it all in for her unless >> someone is there 24/7-- interevenor-style. But she doesn't qualify for >> one because her hearing and vision are " good enough " . And it is good >> enough to function, but not good enough for optimal functioning. I >> can't imagine all the effort and mental gymnastics it takes for her >> brain to make sense of everything and to compensate, but she does it. >> As she gets older and can understand the efforts she is making and can >> appreciate the assistances we can provide, then things will make more >> sense for all of us. I know what I'd like for her ideally, and I'll >> keep working towards that, but I know it can't happen immediately. All >> of the conversations here keep me motivated, keep my eyes open, and keep >> me going. I appreciate how well you clued into the situation just from >> being my friend here on the list -- I know we've met once, but gee -- it >> was once and for a very short time! >> >> Anyway-- I will not give up on the sign. I will keep my mind open and >> watching for the best timing and method to get it done. In the >> meantime, I will not beat myself up for not doing it now or yesterday. >> >> Thanks- >> Michele W >> >>> >> >> >> >> >> Membership of this email support groups does not constitute >>membership in the >> CHARGE Syndrome Foundation or CHARGE Syndrome Canada. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter), >> please contact marion@... or visit >> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada >> information and membership, please visit http://www.chargesyndrome.ca, or >> email info@.... >> 7th International >> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >> Information will be available at www.chargesyndrome.org or by calling >> 1-. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Bonnie, You are good! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 , That is an extremely important point to bring up! Thank you so much. We are actually teaching Kennedy to self-advocate when she doesn't understand. At speech, her therapist will ask her something and if Kennedy doesn't " get it " , Beth teaches her to say " I didn't hear you, Beth, can you tell me again? " It's working very well. You wouldn't think to teach someone that, but self-advocation is a very important skill to be taught to our kids. Thank you again, Mom to Kennedy, 7 yrs with CHARGE, 15, 13 and wife to Graeme New Brunswick, Canada Visit our family on the web! http://ca.geocities.com/weirfamilyrogers lisaweir@... Nieder wrote: I would like to throw my two cents as a charge adult myself. I am totally deaf in my left ear, and wear a hearing aid in my right. For the most part it seems to be enough but from time to time I do miss out a bit. For kids with a similar situation, I think learning sign informally is a great thing! Its nice to have something to fall back on. As for classroom use, I think then you are dealing with getting someone in the classroom who can sign, and for child, that can really make them feel more self conscious then they already are. Not to mention all the red tape you are going to have to go through! That is a case where technology can come into play. A lot of FM systems and directional microphones are so small and discreet now days, most other students wouldn't know they are there! I do wish I had learned sign as a child and now that I am 26 there is nothing available for me to learn on a one on one basis. So yes, encourage it, but more so encourage your children to speak up and be assertive. " I am sorry, I didn't quite catch that " , " Would you repeat this please " . In the end the confidence will come in much more handy!! For older children, let them know its an option. Do not force it upon them. If they need it, they will do it when the timing is right for them. Nieder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Kim- You have really nailed this one for me. Yes, we have a high school boy who just this year returned to our town schools from ISD. He's a doll -- always friendly when we were at infant or preschool playgroup at ISD or at the local pool here. I've talked to his mom and she thinks he'd love it. There is also another high school girl who signs but I believe she still goes to ISD which means she's less available to us due to her travel time etc. I think the boy vocalizes enough to help us understand him as we learn sign. It helps too that Aubrie is learning to read -- she can read the words in the sign dictionary! The high school boy has a woman from town as his interpreter. She worked at ISD years ago. We asked her to be Aubrie's aid in preschool but she wasn't ready to return to work then. I don't know how she's enjoying her job, but she may be a resource too. Everything is falling in to place for the community to support a sign club. My best friend is the children's librarian so it's possible that we could meet there too. I have been debating if it'd be a good thing to do on our own or if we should get the school in charge. Having them in charge relieves me of the pressure, but also relinquishes my control. It'd be ideal for her teacher and aid to be involved -- even just as participants -- but I don't know that we can force that. Michele W > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Kim, that is a great idea!!!! Someone coming for Story Time--nice for all the kids and doesn't single anyone out (if Aubrie begins to feel that; my guess is she won't, but this is for everyone). pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 M, I think if there was an " ethic " around signing--meaning if you want it, she wants it, others are willing to " buy in " then it will become apparent to all who are around Aubrie that this helps her and they will do it. Perhaps not fluently at first, or all the time at first, but as everyone gets to feel more comfortable, it becomes habit and " the norm " and we can't remember when we did NOT sign!!! I also agree with Kim, you do not have to be solely responsible for all of this. Others will help because they want to do something fun, too. And... you don't need to do everything at once. One step at a time will get you to the same place but with more thought, less anxiety, and more fun!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Cathie, Wow, it sounds like you are doing great things for !! signs, PECS,verbal input--you are giving her everything she needs for now. It must be terribly hard not knowing what to do and when. You did it the right way for you and your family and most of all, . I am just so sorry that you are still feeling so badly about the BAHA. And... you are continuing to do the right things for --follow your best intuitions, they will get you to the right place. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Hi--I am finally back online and caught up on emails. Whenever I go out of town it completely throws my entire life off. I have been reading the communication posts and have been totally engrossed. I don't really have much to add. Now that Rose has the CI, and it is working well, we have been told by some to stop signing. I only sign a bit with her, but I do notice that it helps at times and Rose usually says the word in addition to the sign when she uses signs. At her preschool they use sign and speech for all of the kids. It is an integrated preschool. Over the last four years I have had similiar issues , feeling overwhelmed, feeling like there is always so much more I can be doing. I feel that way about certain things now. I realize that what I tend to do is focus on one issue at a time. For awhile our focus was signing, then hearing, then eating, sitting and walking were thrown in there, then back to hearing, then eating again, you get the picture. , it seems like your being led to follow this signing path right now, I sense that you don't need to make a huge jump right now in getting it for her in school, but it sounds right to start with one step and if you need to go further I know you will. I just love reading everyone's different ideas, I feel like I am just soaking it up! My current challenge right now with Rose, is that she will be going to kindergarten next year. I don't know where she will be yet. I would like her to go to a charter school we have here that has really small classes, it is K-8, and I like the idea of her being with the same group of kids over time, especially with further sugeries, etc. They have a lottery system for getting into their school. I tend to get really overwhelmed when I think of next year, I don't know what to ask for for her in her classroom, etc. But I just keep trying to trust and have faith that all will come. I always think that if something is not working we can change it, or if we need to add something I will make it happen. I also think I just am not looking forward to more changes. So far I have been incredibly fortunate in that I have had no issues with school systems in any of the requests I have made. Our IEPs have all been fine so far.,,..... Beckett--mom to Rose 4, Henry 6 and Forrest 2, also our new Puppy Shep 5months! ps--Rose's g-tube site has closed beautifully! She did have a bad reaction to the band-aid, but otherwise everything is great! I am so happy for her! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Just posted about the joint pain! Friends in CHARGE, Marilyn Ogan Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Re: communication > What good is an interpreter if you don't know the language > being used? Marilyn, Excellent point. Did you see the question earlier today I think on joint pain and possible juvenile arthritis? I was hoping you would see it and respond. Kim Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 hey heather just interested to know how rose gtube is do u think i could convince my doctors do do the same to the jsite inother words the bogh maybe not how was your holiday on the comunication side i signed when i was little and now i talk just wanted to check in on things ellen howe > Hi--I am finally back online and caught up on emails. Whenever I go out of > town it completely throws my entire life off. > I have been reading the communication posts and have been totally > engrossed. I don't really have much to add. Now that Rose has the CI, and > it is working well, we have been told by some to stop signing. I only sign > a bit with her, but I do notice that it helps at times and Rose usually says > the word in addition to the sign when she uses signs. At her preschool they > use sign and speech for all of the kids. It is an integrated preschool. > Over the last four years I have had similiar issues , feeling > overwhelmed, feeling like there is always so much more I can be doing. I > feel that way about certain things now. I realize that what I tend to do is > focus on one issue at a time. For awhile our focus was signing, then > hearing, then eating, sitting and walking were thrown in there, then back to > hearing, then eating again, you get the picture. > , it seems like your being led to follow this signing path right > now, I sense that you don't need to make a huge jump right now in getting it > for her in school, but it sounds right to start with one step and if you > need to go further I know you will. I just love reading everyone's > different ideas, I feel like I am just soaking it up! > My current challenge right now with Rose, is that she will be going to > kindergarten next year. I don't know where she will be yet. I would like > her to go to a charter school we have here that has really small classes, it > is K-8, and I like the idea of her being with the same group of kids over > time, especially with further sugeries, etc. They have a lottery system for > getting into their school. I tend to get really overwhelmed when I think of > next year, I don't know what to ask for for her in her classroom, etc. But > I just keep trying to trust and have faith that all will come. I always > think that if something is not working we can change it, or if we need to > add something I will make it happen. I also think I just am not looking > forward to more changes. So far I have been incredibly fortunate in that I > have had no issues with school systems in any of the requests I have made. > Our IEPs have all been fine so far.,,..... > > > Beckett--mom to Rose 4, Henry 6 and Forrest 2, also our new Puppy > Shep 5months! > > ps--Rose's g-tube site has closed beautifully! She did have a bad reaction > to the band-aid, but otherwise everything is great! I am so happy for her! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 << she uses a PECs at school, some verba, cues,and basic signs. eriak cannot sign, its part a motor pplanning and also i dont think she can understand it. this is the MOST FRUSTRATING for us, we still cannot figure out the best means for communication. >> Cathie-- You are not alone in your frustration. Eddie does not use any sign & I'm not sure he understands (pays attention?) when we sign to him. I feel like we're trying everything we can think of (PECS, speech, sign, object symbols), but without consistency from school to home to therapy... He does seem to understand a lot of our speech, even without his aides, but we're desperate to give him a way to express himself. Joanne mom to Eddie, 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 , I sure sounds like you are doing such a great job!! I also like your one thing at a time philosophy--sounds like it is working. I have a question about the CI and that people are telling you not to sign with your daughter? Why are they saying that? I hve been reading that a lot here and it harkens back to the original oral/sign debate. I would be curious as to the explanation from your daughter's CI team. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Oh, Bonnie, You give me way too much credit! I have been lucky in my life to have a found a job I love and a place to do what I do,that I also love. And... I have learned from the best all along--the parents! So, thank you so much--I appreciate the sentiment, but there are others, too and you would be one of those people to follow. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 Hi Ellen----Rose's gtube looks good. It didn't drain at all, and was pretty much closed up within 24 hours, so we were lucky, but I had a feeling it would be ok, and it was just time to do something! I don't know about your jsite, when was the last time you used it? Our holiday was great! My husband and I had a very relaxing and fun time together. We were in ton, SC, it is beautiful there. Thanks for asking. How old were you when you began speaking, did you have trouble with pronounciation or articulating any sounds? --Rose, Henry and Forrest's MoM & gt;From: & quot;howeellen & quot; & lt;ellen.howe@... & gt; & gt;Reply-To: CHARGE & gt;To: CHARGE & gt;Subject: Re: communication & gt;Date: Wed, 09 Feb 2005 08:07:55 -0000 & gt; & gt; & gt;hey heather just interested to know how rose gtube is do u think i & gt;could convince my doctors do do the same to the jsite inother words & gt;the bogh maybe not how was your holiday on the comunication side i & gt;signed when i was little and now i talk just wanted to check in on & gt;things ellen howe & gt; & gt; Hi--I am finally back online and caught up on emails. Whenever I & gt;go out of & gt; & gt; town it completely throws my entire life off. & gt; & gt; I have been reading the communication posts and have been & gt;totally & gt; & gt; engrossed. I don't really have much to add. Now that Rose has the & gt;CI, and & gt; & gt; it is working well, we have been told by some to stop signing. I & gt;only sign & gt; & gt; a bit with her, but I do notice that it helps at times and Rose & gt;usually says & gt; & gt; the word in addition to the sign when she uses signs. At her & gt;preschool they & gt; & gt; use sign and speech for all of the kids. It is an integrated & gt;preschool. & gt; & gt; Over the last four years I have had similiar issues , & gt;feeling & gt; & gt; overwhelmed, feeling like there is always so much more I can be & gt;doing. I & gt; & gt; feel that way about certain things now. I realize that what I tend & gt;to do is & gt; & gt; focus on one issue at a time. For awhile our focus was signing, & gt;then & gt; & gt; hearing, then eating, sitting and walking were thrown in there, & gt;then back to & gt; & gt; hearing, then eating again, you get the picture. & gt; & gt; , it seems like your being led to follow this signing path & gt;right & gt; & gt; now, I sense that you don't need to make a huge jump right now in & gt;getting it & gt; & gt; for her in school, but it sounds right to start with one step and & gt;if you & gt; & gt; need to go further I know you will. I just love reading & gt;everyone's & gt; & gt; different ideas, I feel like I am just soaking it up! & gt; & gt; My current challenge right now with Rose, is that she will be & gt;going to & gt; & gt; kindergarten next year. I don't know where she will be yet. I & gt;would like & gt; & gt; her to go to a charter school we have here that has really small & gt;classes, it & gt; & gt; is K-8, and I like the idea of her being with the same group of & gt;kids over & gt; & gt; time, especially with further sugeries, etc. They have a lottery & gt;system for & gt; & gt; getting into their school. I tend to get really overwhelmed when I & gt;think of & gt; & gt; next year, I don't know what to ask for for her in her classroom, & gt;etc. But & gt; & gt; I just keep trying to trust and have faith that all will come. I & gt;always & gt; & gt; think that if something is not working we can change it, or if we & gt;need to & gt; & gt; add something I will make it happen. I also think I just am not & gt;looking & gt; & gt; forward to more changes. So far I have been incredibly fortunate & gt;in that I & gt; & gt; have had no issues with school systems in any of the requests I & gt;have made. & gt; & gt; Our IEPs have all been fine so far.,,..... & gt; & gt; & gt; & gt; & gt; & gt; Beckett--mom to Rose 4, Henry 6 and Forrest 2, also our new & gt;Puppy & gt; & gt; Shep 5months! & gt; & gt; & gt; & gt; ps--Rose's g-tube site has closed beautifully! She did have a bad & gt;reaction & gt; & gt; to the band-aid, but otherwise everything is great! I am so happy & gt;for her! & gt; & gt; & gt; Quote Link to comment Share on other sites More sharing options...
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