Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 My husband and I were at the conference, but didn't come with us. She stayed with my parents in KY. I kind of wish she would have been with us, now that I saw all the other kids there, but I'm just not sure how well she would have traveled. She's at that age where she doesn't want to sit still for long at all, and without much language yet, it would have been impossible to explain to her why she needed to sit in her seat for so long on the flight there. We're hoping to bring her to the next conference in two years, though. 's progress with her implant is still really slow. She did well for the first six months she had it, then plateaued and even regressed for about a year after that. We also had a really hard time getting her to even wear the magnet for that year--it was a constant battle. But for the past six months, she's being showing signs of progress again. They really worked with her at school this spring to keep her magnet on all the time, and she's doing pretty well with that now. She's starting to show signs that she's hearing things receptively again--she'll turn to her name, presses her ear to the TV to hear songs she likes on her videos, etc. She tested really well in the booth this spring, too. One thing we did was slow down the mappings. That first year, we were really aggressive about mapping. We got new maps about every three months, and we pushed the audiologist to be aggressive about trying different things with them since plateaued so much. But we backed off of that, and it seems to be working better for her. She's been on the same map for probably six or eight months, and she's really starting to respond to it now. It may have just been that she needed more time to process the sounds at a given level, and we weren't giving her that time. The only downside is, she's probably not going to tolerate changes to her maps very well now that she's used to this certain one. But hopefully, the audiologist will make the changes gradual enough that won't notice them much. We're going in later this month for some adjustments to lower frequencies, because seems to respond better to women's (higher) voices than men's right now. We'll see how that goes. 's verbal skills are limited to " mmmm " and " ma-ma " right now too, but I'll take it! We sign with her too (I think you sign with Lucas, too, right?), and that's been slow coming along for her too, but she's starting to pick up a few and use them to request things-- " milk, " " all done, " etc. She just learned " all done " recently, and now everytime she sits at the kitchen table for a meal, she takes two or three bites and then starts flashing " all done, " " all done. " Didn't take her long to learn how to abuse that one! :-) Keep us posted on Lucas's progress. I'm glad he's doing so well! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 , Did you attend Dr. van Dijk's session? He showed a child who clearly attended better to an activity with her implant turned on than when it was off, even though she was not showing benefits such as speech at the time. It's like what she did get from it was enough to cause her body to perk up and pay attention (an alerting response). Do you see those benefits? Kim > My husband and I were at the conference, but didn't come with us. She > stayed with my parents in KY. I kind of wish she would have been with us, now > that I saw all the other kids there, but I'm just not sure how well she would > have traveled. She's at that age where she doesn't want to sit still for long > at all, and without much language yet, it would have been impossible to > explain to her why she needed to sit in her seat for so long on the flight > there. We're hoping to bring her to the next conference in two years, though. > > 's progress with her implant is still really slow. She did well for the > first six months she had it, then plateaued and even regressed for about a > year after that. We also had a really hard time getting her to even wear the > magnet for that year--it was a constant battle. But for the past six months, > she's being showing signs of progress again. They really worked with her at > school this spring to keep her magnet on all the time, and she's doing pretty > well with that now. She's starting to show signs that she's hearing things > receptively again--she'll turn to her name, presses her ear to the TV to hear > songs she likes on her videos, etc. She tested really well in the booth this > spring, too. > > One thing we did was slow down the mappings. That first year, we were really > aggressive about mapping. We got new maps about every three months, and we > pushed the audiologist to be aggressive about trying different things with > them since plateaued so much. But we backed off of that, and it seems > to be working better for her. She's been on the same map for probably six or > eight months, and she's really starting to respond to it now. It may have > just been that she needed more time to process the sounds at a given level, > and we weren't giving her that time. The only downside is, she's probably not > going to tolerate changes to her maps very well now that she's used to this > certain one. But hopefully, the audiologist will make the changes gradual > enough that won't notice them much. We're going in later this month for > some adjustments to lower frequencies, because seems to respond better > to women's (higher) voices than men's right now. We'll see how that goes. > > 's verbal skills are limited to " mmmm " and " ma-ma " right now too, but > I'll take it! We sign with her too (I think you sign with Lucas, too, > right?), and that's been slow coming along for her too, but she's starting to > pick up a few and use them to request things-- " milk, " " all done, " etc. She > just learned " all done " recently, and now everytime she sits at the kitchen > table for a meal, she takes two or three bites and then starts flashing " all > done, " " all done. " Didn't take her long to learn how to abuse that one! :-) > > Keep us posted on Lucas's progress. I'm glad he's doing so well! > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Kim, Yes, that does make sense, now that you mention it. Hmmm, I'll have to think about this more in terms of how we might use this with . I'd say, out of all her senses, the one that gets and keeps her attention most is visual. She's a very visual person. She has bilateral colobomas, the one in her left eye being in the optic nerve, but she still seems to use her functional vision very well. Actually, I guess we've been thinking about this already in terms of language. She's starting to grasp a few signs but only uses a couple functionally. But she has a big interest in pictures, especially photos, so we're adding a picture system and a calendar system at home and at school this fall. I'll have to think more about how we might incorporate some visual stimulation into things like learning to walk, wearing her implant, etc., too. Ideas are welcome! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Ka- I just had to respond. sounds like Aubrie with her love of pictures/photos. Aubrie has always enjoyed " reading " catalogs and magazines. She's flipped the pages of those since infancy. She reads her school yearbooks constantly. Even likes me to sit and read all the names to her. She loves photos and photo albums. Friends who know this about her will keep an extra copy of photos for her. I think her fascination with pictures and print has translated into good reading skills. She was reading at the top of her grade level at the end of 1st grade. She has very minimal vision in one eye but nearly normal in the other. I don't know how she's done so well with phonics given her hearing loss (mild-mod & mod-sev unaided til age 3 yrs) but she's done amazingly well. We are just starting to see the difficulties in hearing and spelling all the sounds. Build on those interests and strengths and who knows where will lead you! Michele W Aubrie's mom age 7 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 , Dylan has always used his limited vision extremely well, so well that he often fools people into thinking he sees just fine. BUT he actually saw well gross shapes and movement, but was not getting detail and things that were stationary. Thus he navigates the environment and understands what's happening in the world, but had a hard time with desk work and making sense of sign language; even though he was aware of the movement it was too complex for him to focus on and make sense of it. I am only beginning to get a tiny glimmer of what it is actually like for him. So the trick on using his vision is that anything with movement, reflective properties etc. gets his attention, but it can be a negative in it pulls his attention away from the more difficult static, fine detail work. So we do things like put reflective tape around his paper on the desk, it gets his attention and provides a frame for what he is supposed to be doing. We also block out other distractions by putting up a 3 sided display board around his desk, so movement doesn't pull his attention from his work. He walked on his knees behind a toy dump truck for a long time, then progressd to a therapy walker, and then to a mobility device (a cane with wheels) so his hands were occupied while locomoting for many years. I do think this helped give him stability, and freed up his attention for visual information. Now with signed language we know he learns best if we do tactual sign! We have been trying to convince all team members to do this, since he was about 4 - it has only been recently that it has been consistent, because it has been so easy to think he is getting more information visually than he was. Just by watching , I think you know the things that help her see best. You will know if she can only do one thing at a time, you will know what things cause her to shift to something else, and which help her stay focused. You do great. Kim > Kim, > > Yes, that does make sense, now that you mention it. Hmmm, I'll have to think > about this more in terms of how we might use this with . I'd say, out of > all her senses, the one that gets and keeps her attention most is visual. > She's a very visual person. She has bilateral colobomas, the one in her left > eye being in the optic nerve, but she still seems to use her functional vision > very well. Actually, I guess we've been thinking about this already in terms > of language. She's starting to grasp a few signs but only uses a couple > functionally. But she has a big interest in pictures, especially photos, so > we're adding a picture system and a calendar system at home and at school this > fall. I'll have to think more about how we might incorporate some visual > stimulation into things like learning to walk, wearing her implant, etc., too. > Ideas are welcome! > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 michelle i find it interesting tht you say aubrie loves photos course so do i ill allways look at my phtoto albums got hepas full of family friends and stuff might be a visual thing but i love looking and remembering ellen > > , > > Dylan has always used his limited vision extremely well, so well that he > often fools people into thinking he sees just fine. BUT he actually saw > well gross shapes and movement, but was not getting detail and things that > were stationary. Thus he navigates the environment and understands what's > happening in the world, but had a hard time with desk work and making > sense > of sign language; even though he was aware of the movement it was too > complex for him to focus on and make sense of it. I am only beginning to > get a tiny glimmer of what it is actually like for him. > > So the trick on using his vision is that anything with movement, > reflective > properties etc. gets his attention, but it can be a negative in it pulls > his > attention away from the more difficult static, fine detail work. So we do > things like put reflective tape around his paper on the desk, it gets his > attention and provides a frame for what he is supposed to be doing. We > also > block out other distractions by putting up a 3 sided display board around > his desk, so movement doesn't pull his attention from his work. > > He walked on his knees behind a toy dump truck for a long time, then > progressd to a therapy walker, and then to a mobility device (a cane with > wheels) so his hands were occupied while locomoting for many years. I do > think this helped give him stability, and freed up his attention for > visual > information. > > Now with signed language we know he learns best if we do tactual sign! We > have been trying to convince all team members to do this, since he was > about > 4 - it has only been recently that it has been consistent, because it has > been so easy to think he is getting more information visually than he was. > > Just by watching , I think you know the things that help her see > best. > You will know if she can only do one thing at a time, you will know what > things cause her to shift to something else, and which help her stay > focused. You do great. > > Kim > > > > > > Kim, > > > > Yes, that does make sense, now that you mention it. Hmmm, I'll have to > think > > about this more in terms of how we might use this with . I'd say, > out of > > all her senses, the one that gets and keeps her attention most is > visual. > > She's a very visual person. She has bilateral colobomas, the one in her > left > > eye being in the optic nerve, but she still seems to use her functional > vision > > very well. Actually, I guess we've been thinking about this already in > terms > > of language. She's starting to grasp a few signs but only uses a couple > > functionally. But she has a big interest in pictures, especially photos, > so > > we're adding a picture system and a calendar system at home and at > school this > > fall. I'll have to think more about how we might incorporate some visual > > stimulation into things like learning to walk, wearing her implant, > etc., too. > > Ideas are welcome! > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 ellen - Aubrie's love of photos borders on obsession. But it's served her well. She can learn anything if it's presented in a flashcard or photo album or something like that. Same goes for music. Put it into a song and you've got her attention! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 , That's neat that Aubrie's love of pictures and photos has translated into good reading skills. That's what I'm hoping for , too. I worry about the deaf piece of it for her, because she's bilaterally profoundly deaf, and most literature you read says that reading is a really hard skill to master for deaf children with no residual hearing. But she does have a cochlear implant and is finally showing some receptive progress with that after a couple of years, so hopefully that will help. I'm hoping, too, that her love of books and pictures will help her. She's loved books ever since she was a few months old. She's got a favorite one that has page after page of several photos of different things--people, animals, toys, etc. She's recently figured out that some of the pictures in the book actually " match " some of the pictures on the cover, so she loves to find those and point those out. I thought that was pretty amazing for a three year old! So her preschool teacher is going to try to incorporate more photo-type pictures, matching, etc. into 's schoolday this year. We also recently turned on the closed captioning on the TV so she can watch the words on the screen when she watches her videos. She seems to be pretty interested in that! Sorry I missed meeting you and Aubrie at the conference this year. I saw you a couple of times in passing or across a room, but never got a chance to say hi. Will have to make it a point to meet you at the next one! , mom to (3 1/2) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Kim, The reflective tape on the desk and the three-sided panel are great ideas! I'll have to keep notes on ideas like this for when gets a little older and starts doing desk work. She doesn't do much of that at preschool now, but when she does have to sit at the table to do things like artwork, etc., her attention wanes pretty fast. We don't know if it's a vision issue, or disinterest, or a rebellion to being " captive " in a chair at a table or desk, or what. We did private speech therapy once a week this summer through our Children's Hospital, and her speech therapist really wanted to do the first 3/4 of the session at a desk. That worked about the first week, and then it went downhill from there. I called it " the hour from hell " every week! Clearly, this woman's methods and just didn't " click. " She tried a few things we recommended, but I think the damage to her relationship with had been done by the time she tried those. I'm hoping we can learn a little more about 's vision this fall. We're trying to get her in to see a pediatric opthalmologist at Children's here in Cincinnati who is supposed to be really knowledgeable in things like colobomas, retinal detachment, etc. We've seen two other pediatric opthalmologists previously here who practice outside of Children's and weren't that impressed by either of them. It would be nice to find someone who can help us understand 's vision more. That's the biggest missing piece of the puzzle for us right now. Oh, and I wanted to mention that I was sorry I didn't get a chance to meet you at the conference. I attended your session on CVI and was going to say hello at the end, but you had a line of people asking questions, so I didn't get a chance. Definitely next time! --------------------------------- Yahoo! Mail for Mobile Take Yahoo! Mail with you! Check email on your mobile phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 Hi , If you do think about how to integrate the minimising of too many sensory inputs at a time to maximise learning, please do share this with us, particularly in relation to cochlear implants (just in case 's does go ahead). I was thinking hard about it as soon as I read yours and Kim's posts. We have not yet heard from the hospital but I will be on to it this week now that I have almost had a week since we returned. Re the pictures thing, also loves looking at pictures, particularly photos. As we are also struggling with her expressive language, this is what led us to ask the speech and language therapist at school if we can take a step back and look at PECS and also a daily visual callendar. Both have started at school but we have really only implemented PECS at home so far - callendar to follow. She responded to the first stages of PECS very well but the trip to Miami somewhat interrupted this. We plan to reintroduce the systems this week. I know she has not forgotten because she was most excited today when I showed her the picture of a shopping trolley ( she loves supermarket shopping and signed " shopping " repeatedly). Re the walking thing, I think Kim's description of Dylan's progress sort of describes 's. The only other thing we did with was encourage her to do lots of cruising around furniture. The summer before she started walking independently, we arranged the living room furniture so that she could cruise to whatever she needed and up to the kitchen for meals etc. We discouraged shuffling on her bottom (her then preferred mode of mobilising) and replaced it with cruising as much as possible. For outside the home, she had the K-walker which she totally loved. She also had one at school which enabled her to make choices and take herself to preferred classroom activities. Her real interest in her environment started when she had the walker as it gave her access to so much more around the room. She too is very visual and she was able to explore her environment once she was upright. 's MSI teacher did suggest that as she is fond of making circuits (aren't all our kids?) it might be worth putting learning opportunities along the potential circuits. This means that her visual attention would be caught while she was on her way to somewhere else. As Kim suggested, if these involve shiny objects and colours, all the better as they stand greater chance of drawing attendion. Now, our cherub is into everything she can reach so these are no longer necessary. I hope this helps a little and please do come back if it makes little sense. I am zonked now and this is really the last post I am doing tonight. Tomorrow is a mad day full of appointments including our first horseriding class (eek, I am nervous of horses but once I was pretty nervous of snakes too until the zoo offered close encouters with animals for children with visual impairments, but that's another story). Flo > >Reply-To: CHARGE >To: CHARGE >Subject: Re: / at the conference? >Date: Sat, 6 Aug 2005 12:05:43 -0700 (PDT) > >Kim, > >Yes, that does make sense, now that you mention it. Hmmm, I'll have to >think about this more in terms of how we might use this with . I'd >say, out of all her senses, the one that gets and keeps her attention most >is visual. She's a very visual person. She has bilateral colobomas, the >one in her left eye being in the optic nerve, but she still seems to use >her functional vision very well. Actually, I guess we've been thinking >about this already in terms of language. She's starting to grasp a few >signs but only uses a couple functionally. But she has a big interest in >pictures, especially photos, so we're adding a picture system and a >calendar system at home and at school this fall. I'll have to think more >about how we might incorporate some visual stimulation into things like >learning to walk, wearing her implant, etc., too. Ideas are welcome! > > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 Flo, Thanks for all the info and ideas! I'm hoping that a picture system and calendar system help fill in some of the gaps for , too. Does use a true PECS system, with line drawings, or have you made your own? Our deafblind specialist suggested that we try real photos with instead of the line drawings. The program she went to before preschool used the line drawings, but she never showed any interest or recognition with those. We're hoping since she seems to like photos so well, maybe a modified PECS system using photos will help. Arlin even took some digital photos of things around the house here this week, and we're going to see if 's teacher will laminate them for us. That's neat to hear that puts the pictures and the signs together. That's what I'd like to see eventually do. That's a great idea, too, about moving your furniture around so that was able to cruise to everything. Ours is still pretty spaced out, and seems to be bored with using her walker or doesn't like the confinement of it, so she'd rather come get us and have us loan her a finger so she can balance herself and walk to things. On one hand, it's good that she's wanting to try to walk so much on her own, but on the other hand, it's not very independent for either of us to have her holding onto our fingers all the time! I'd like to encourage her to move around more independently. Hope you're able to get some sleep tonight and that is back into a regular routine soon! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 , I was reading your post about having trouble grasping 's vision impairment. Makenna was visited by a vision specialist from the DB program in Columbus. She is going to go to Makenna's preschool for a few visits in the fall and come to the IEP with goals and suggestions for the classroom. Anyway she said from the doctors reports she can give us vision goggles that replicate Makenna's vision difficulties, ie field cuts and near sightedness and cataracts, etc. I told her I wanted to be invited to this meeting to try it out to. Anyway thought this may be a way for you to experience 's vision problems. I have the contact info if your interested. , mom to Makenna -- Re: / at the conference? Kim, The reflective tape on the desk and the three-sided panel are great ideas! I'll have to keep notes on ideas like this for when gets a little older and starts doing desk work. She doesn't do much of that at preschool now, but when she does have to sit at the table to do things like artwork, etc., her attention wanes pretty fast. We don't know if it's a vision issue or disinterest, or a rebellion to being " captive " in a chair at a table or desk, or what. We did private speech therapy once a week this summer through our Children's Hospital, and her speech therapist really wanted to do the first 3/4 of the session at a desk. That worked about the first week and then it went downhill from there. I called it " the hour from hell " every week! Clearly, this woman's methods and just didn't " click. " She tried a few things we recommended, but I think the damage to her relationship with had been done by the time she tried those. I'm hoping we can learn a little more about 's vision this fall. We're trying to get her in to see a pediatric opthalmologist at Children's here in Cincinnati who is supposed to be really knowledgeable in things like colobomas, retinal detachment, etc. We've seen two other pediatric opthalmologists previously here who practice outside of Children's and weren t that impressed by either of them. It would be nice to find someone who can help us understand 's vision more. That's the biggest missing piece of the puzzle for us right now. Oh, and I wanted to mention that I was sorry I didn't get a chance to meet you at the conference. I attended your session on CVI and was going to say hello at the end, but you had a line of people asking questions, so I didn't get a chance. Definitely next time! --------------------------------- Yahoo! Mail for Mobile Take Yahoo! Mail with you! Check email on your mobile phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 - I just attended a workshop on Cued Speech. Until then, I knew nothing about it. Look into it. It's amazing. It is a manual/visual representation of spoken English. After attending the training, I don't know how anyone would attempt teach a deaf child to read without it. Most children and adults who Cue also Sign so it doesn't have to be an either/or decision. All of the info to cue can be learned in one or 2 days of training. After that, 3-6 months of practice and daily use can make one fluent. Michele W Aubrie's mom 7 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 , Interesting question for the list. How long did it take to get to point of being able to sit at and work at a desk? It concerns me when our children are expected to conform to a desk when there may be physical reasons why the information is not as meaningful to them in that position. It goes back to Brown, Dr. van Dijk etc, of learning from the child what works best for them. Adults can get so concerned about teaching who is the boss, that they forget to pay attention to what works for the child. My strong bias is to teach how the child learns, because each thing the child learns lays the foundation for the next piece. The more blocks to the foundation they get, then they are more able to get to the point of doing things the expected way, but if we start by trying to force them into doing it the expected way right off, they are not able and all you get is power struggles - case in point, the hour from .... With speech. Too bad we didn't get a chance to connect after my session. That was one hectic day. Kim > Kim, > > The reflective tape on the desk and the three-sided panel are great ideas! > I'll have to keep notes on ideas like this for when gets a little older > and starts doing desk work. She doesn't do much of that at preschool now, but > when she does have to sit at the table to do things like artwork, etc., her > attention wanes pretty fast. We don't know if it's a vision issue, or > disinterest, or a rebellion to being " captive " in a chair at a table or desk, > or what. We did private speech therapy once a week this summer through our > Children's Hospital, and her speech therapist really wanted to do the first > 3/4 of the session at a desk. That worked about the first week, and then it > went downhill from there. I called it " the hour from hell " every week! > Clearly, this woman's methods and just didn't " click. " She tried a few > things we recommended, but I think the damage to her relationship with > had been done by the time she tried those. > > I'm hoping we can learn a little more about 's vision this fall. We're > trying to get her in to see a pediatric opthalmologist at Children's here in > Cincinnati who is supposed to be really knowledgeable in things like > colobomas, retinal detachment, etc. We've seen two other pediatric > opthalmologists previously here who practice outside of Children's and weren't > that impressed by either of them. It would be nice to find someone who can > help us understand 's vision more. That's the biggest missing piece of > the puzzle for us right now. > > Oh, and I wanted to mention that I was sorry I didn't get a chance to meet you > at the conference. I attended your session on CVI and was going to say hello > at the end, but you had a line of people asking questions, so I didn't get a > chance. Definitely next time! > > > > > --------------------------------- > Yahoo! Mail for Mobile > Take Yahoo! Mail with you! Check email on your mobile phone. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 When you mention her walker, is it a therapy walker or a baby walker? Kim > Flo, > > Thanks for all the info and ideas! I'm hoping that a picture system and > calendar system help fill in some of the gaps for , too. Does > use a true PECS system, with line drawings, or have you made your own? Our > deafblind specialist suggested that we try real photos with instead of > the line drawings. The program she went to before preschool used the line > drawings, but she never showed any interest or recognition with those. We're > hoping since she seems to like photos so well, maybe a modified PECS system > using photos will help. Arlin even took some digital photos of things around > the house here this week, and we're going to see if 's teacher will > laminate them for us. That's neat to hear that puts the pictures and > the signs together. That's what I'd like to see eventually do. > > That's a great idea, too, about moving your furniture around so that > was able to cruise to everything. Ours is still pretty spaced out, and > seems to be bored with using her walker or doesn't like the confinement of it, > so she'd rather come get us and have us loan her a finger so she can balance > herself and walk to things. On one hand, it's good that she's wanting to try > to walk so much on her own, but on the other hand, it's not very independent > for either of us to have her holding onto our fingers all the time! I'd like > to encourage her to move around more independently. > > Hope you're able to get some sleep tonight and that is back into a > regular routine soon! > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 , Yes, if you would send me the name of the person who came out to see you, that would be great. We had a vision specialist come from Ohio DB too, back in January right before started preschool. But they sent the person who is their agent in this area, a woman from Hamilton County MRDD in Cincinnati, and she was rather worthless! She missed several appointments with no calls or excuses and flat-out lied to us on a couple of occasions. She did eventually put together some decent suggestions for 's IEP, but she was fairly unethusiastic in her work. She never mentioned to us the goggles or anything along those lines, either. Maybe if I talked to Pattie Stechschulte, the family coordinator for Ohio DB, and requested the person you've worked with, we'd have better results. Thanks for the info. --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 , You know, we looked into cued speech early on, when we first found out was deaf, and I was really impressed with it, but then we got caught up in signing, the implant, aural rehab, etc., and put it on the back burner. I'll have to look into it again. I didn't realize it was just a two-day session to learn it. That would definitely be worth the time! Do they offer workshops around the country? Is there a web site you went to to find the workshop? Thanks for the info! --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 Kim, You've made some good points that I totally agree with. I'm starting to think that private one-hour therapy sessions aren't all that beneficial to . The therapists tend to be very " stuck " in their methods, and they are on a timeclock and want to force into their usual routine right from the start so they can finish up their hour on schedule. She's a slow mover in instances like that and VERY headstrong, so the results are usually a disaster. Her preschool, on the other hand, has been very good at following her lead. It's an inclusion environment, and the teachers, aides, and therapists had no prior experience with CHARGE, but yet they've been very open to learning and finding out the methods that work best for . They let her play and work on the floor a lot, and have even come up with a table that is lower to the ground than the usual classroom art/work table, which they said she's been more cooperative to work at. I do worry, though, that once she gets into a more academic environment, starting with grade school, that the teachers will be less open to these methods. We'll just have to keep documenting what works best for her and push for her needs if and when the time comes. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 It's a therapy walker--a Kaye walker. loved it for the longest time, but she doesn't enjoy it as much anymore. I think part of it is because we had a belt installed in it that goes around her stomach, because when she first got it (over a year ago), she needed that for stability. Now, it's too confining, I think. But when we try to get her to use the walker without wearing the belt, she'll maybe walk across the floor with it one time, and then gets down and crawls to the next point, and never comes back to the walker. She tends to take the easy way out when she can! She may get back into the swing of using it more when school starts back in a couple weeks. --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 Michele, Cued speech is what a's presentation was on. Even in communication disorders as a major there isn't much taught about it. She got much of her info to document from DB Link, and her professor at BU. Bonnie, Mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 - I attended a workshop at our school for the deaf. I can't remember the websites or info. You can do a search and see if you can find the national cued speech site and if that leads to a state resource. This was the first ever training at our school for the deaf. Even the deaf educators there had no experience with cueing. If you need more info, let me know and I'll find my stuff. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 - Keep watching what works for and be prepared to advocate for her in later school years. But don't borrow worries from the future. I am trying to remind myself of this every day. We have enough to deal with right now that we don't need to worry about what's to come. That's not to say we don't think about and prepare for the future -- but that's different than worry. Aubrie has a teacher who totally gets her. She lets her stand at her desk, rock, wiggle, whatever. She'd never make it with a teacher who demanded that she sit still in her desk and " listen " . Aubrie listens and works diligently in spite of whatever posture she needs to be comfortable. Michele W Aubrie's mom 7 yrs entering 2nd grade Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 , Her name is Sue Lanciers. She is really good. She gave some great ideas about encouraging more independence with walking and the importance of a mobility specialist seeing Makenna and the possibility of a cane in unfamiliar areas. I emailed the DB link and talked with Hubster who recommended Sue. Good Luck, -- Re: / at the conference? , Yes, if you would send me the name of the person who came out to see you, that would be great. We had a vision specialist come from Ohio DB too, back in January right before started preschool. But they sent the person who is their agent in this area, a woman from Hamilton County MRDD in Cincinnati, and she was rather worthless! She missed several appointments with no calls or excuses and flat-out lied to us on a couple of occasions. She did eventually put together some decent suggestions for 's IEP, but she was fairly unethusiastic in her work. She never mentioned to us the goggles or anything along those lines, either. Maybe if I talked to Pattie Stechschulte, the family coordinator for Ohio DB, and requested the person you've worked with, we'd have better results. Thanks for the info. --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 , Does she use her walker outside. We have found that will take the easy way out when we are in the house, but when we go outside, she uses her walker all the time. I think it is because there is more space and less obsticles. Just a thought. Mom to 29 months CHARGE, Marissa - 4yrs, Dalani - 9yrs. Kauffman wrote: It's a therapy walker--a Kaye walker. loved it for the longest time, but she doesn't enjoy it as much anymore. I think part of it is because we had a belt installed in it that goes around her stomach, because when she first got it (over a year ago), she needed that for stability. Now, it's too confining, I think. But when we try to get her to use the walker without wearing the belt, she'll maybe walk across the floor with it one time, and then gets down and crawls to the next point, and never comes back to the walker. She tends to take the easy way out when she can! She may get back into the swing of using it more when school starts back in a couple weeks. --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 , Yes, she did seem to like the walker outside more than inside recently. Like you said, I think she has more opportunity in the house to take the easy way out! Lately, though, even outside, she's rather walk with just one of us holding her hand than with her walker. This is actually helping her more with balance than the walker, I think, because she's got a lot less support with just one finger from us rather than the walker--but at the same time, it doesn't do much to promote independence. I guess it's a trade-off, and maybe the independence will start to come back more once she's mastered some walking skills. We're up to about 8 or 9 steps now completely on her own. I was looking back through my journal yesterday, and she was only at 2 steps in April, so she's making some decent progress! , mom to (3 1/2) --------------------------------- Start your day with Yahoo! - make it your home page Quote Link to comment Share on other sites More sharing options...
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