Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Cheryl, good luck with all of this for you and Cassie. We have used the " in-the-panties " thing to with some success for some kids. Given that Cassie wants this, it is likely to all work for her. Do keep us posted. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 lol i don't know if i should be tickled that you like my idea or hurt that you were so surprised ;-) hehe i'm still in school - taking Deaf culture - we learn about technology like that as part of the class ;-) Cole > > -Cole, > you are right!!!! Michele,Cole is so right!! I forgot about that!! if that > is the case, then you only need the " shaker " . good show, cole!! > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 OH NO NO NO!!!! I think it was a " slap my own head " moment. I do remember you are still in school (but nearing the end, right?) and doing brilliantly, I am sure!!! And...my dear, I would expect nothing less than brilliant ideas!!! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 lol i was just teasin ya pam, i have two more semesters after this so i'm about halfway there... and then i have to decide if i'm going to go to austin to do vision training or if i want to go to ASU and get my bachelors in spanish or if i want to go to Arkansas and get my bachelors in ASL... <sigh> i'll decide that when i get there Cole > > OH NO NO NO!!!! > I think it was a " slap my own head " moment. I do remember you are still > in school (but nearing the end, right?) and doing brilliantly, I am sure!!! > And...my dear, I would expect nothing less than brilliant ideas!!! > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 My daughter is amazing. DJ heard her get up at 10:30 and 1:30 the other night. So last night, I tried to wake her at 9 with no success. Then I tried at 10:30 -- yes! She woke up and pottied. Same at 1:30! You should have seen her sleepy beaming smile! We didn't get up again hoping that she was " empty " . She did wet her pullup a bit, but she was thrilled with herself this am. She understands that it will take some time for her body to get the idea of what we want it to do. This was just enough success to keep her going. How lucky are we that this is working out so well already? Knock-on-wood it continues... but of course it will with my little Princess calling the shots for herself. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Michele, She is certainly growing up, sleeping in her big girl bed and wanting to be dry at night! On the alarm, One thought is to do a vibrating alarm clock that shakes the bed from a deaf technology catalog. The other is to look for products that are specifically designed for children with nighttime incontinence and see if any sound like they would work for her. You want her to be able to be alerted to get herself out of bed, to the bathroom, and back to bed without fully waking herself up, turning on every light in the house and so on, because interrupting her sleep cycles twice a night could be difficult on her system. (Think pregnancy - you get up and go in your sleep practically) Kim > Aubrie went to a slumber party Fri night and came home wanting to get rid of > her GoodNights (nighttime pull-ups). She decided a good way was to have an > alarm clock to wake her in the night to go since her body simply doesn't > wake up for it on its own. What a smarty pants! > > > > I have gone over this in my own mind for years thinking it's not something > to lose sleep over and make into an issue since I don't know if her body is > physically ready to stay dry at night - or when it might be. With a typical > kid, I think a good plan is to wait til the pull-up is dry in the morning > and then quit using them. But her's is full - even overflowing sometimes! > No signs that she may be ready physically. When we've talked about it, I > always let her know that it's ok to wear Goodnights as long as she needs to. > > > > > But now that's she's got her own motivation, I am not imposing any new > issues on her, just supporting her in her own goal. We got her a dual alarm > clock so we can set it to wake her twice in the night. It seems that she > doesn't hear the alarm tho! The extra loud alarm at the store was not dual > so I opted for more often rather than louder. The hearing in her good ear > is good enough to hear it - or so I thought. Anyway - I went in and woke > her the first time. The second time, she was not able to wake up. So I > guess we keep at it til she becomes accustomed to night waking and begins to > hear the alarm. I hope it's a matter of becoming tuned into it rather than > a matter of literally hearing it or not. Again, I'm not making it an issue. > If it doesn't work out and she wants to wait and try later, no problem. > Whatever. > > > > I was intrigued by her self-awareness in relation to her peers and her > problem-solving ability to come up with her own plan. Isn't she amazing for > an 8-year-old? > > > > And she's doing well in her new big-girl bed. No side rails. She fell out > once and was not phased by it at all. I think she sort of slipped off > rather than actually falling. > > > > Michele W > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Kim- Yep, the goal will be independence in the night pottying. I'm not sure she can't actually hear the alarm -- it may be that she needs to become tuned in to respond to it. Something kind of funny -- she sleeps on her side with her good ear into the pillow and the bad ear up. I am having to pick her up into my lap to wake her at this point. Once her body gets used this new idea, I'll have a better clue if the alarm alone will work or if we'll need a shaker. I think the IL Assistive Tech Project may have a shaker we could borrow... have to check on that. Hopefully, she won't have to get up too often. It would be great if she became accustomed to pottying when she naturally wakes and turns her music on. With training, I think this can happen. We'll see... All of the thoughts here have been incredibly helpful! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Good idea. And I meant to tell you earlier, that Roy can hear Dylan's pump go off if his " good " ear is up, but if he is sleeping on that ear, then forget it. Kim > Flo- > We all have to find our silver-linings. I guess mine is that Aubrie sleeps > so soundly and does get herself back to sleep when she awakes in the night. > Actually, a friend suggested trying to pay attention to her natural sleep > rhythms so I can set the alarm to wake during her natural light-sleep cycle. > Grand idea -- now how to pay attention to that when I'm sleeping?? > Sometimes I hear her wake in the night and turn her music back on, but it's > one of those things I barely notice and don't wake up for. Thinking out > loud here-- I guess I could consider sleeping on the floor in her room just > long enough to chart her natural cycles. It wouldn't take long and I think > I'd awaken if I were in her room. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > Re: night-time potty plan > > , > I have been wondering when something will tempt me out of lurk mode and you > and Michele have found it for me. probably has the same issues as > Kennedy in terms of the fact that if she wakes to pee, she is likely to then > party for 2-3 hours before going back to sleep if at all; so maybe we too > will wait until she notices that being " dry " is a good thing and wants to > work on it. For the moment, both our girls are at the same stage so we can > persevere and I guess it may be an issue when notices that Elly is > not wearing pullups any more. We are trying without success (not very hard > I would add) to work out how we can get Elly dry at nights since she has > been dry in daytimes longer. She is still a little young so no rush, and > this takes the pressure off " big sis " as Elly calls . > > Michele, please keep us posted of progress. I agree with , vibrating > alarm may be the way to go. Was just thinking of one for J. Hooray for > Aubrie for working it out for herself. > > Flo > > > >> >> Michele, >> What about a vibrating alarm clock (goes under your pillow)? Then the >> sound wouldn't wake the rest of the house and would be maybe more easily >> " felt " than " heard " when she is sleeping. >> See: http://www.harriscomm.com/catalog/default.php?cPath=1140_42_125 >> >> I have thought about night training for Kennedy too as she has been >> trained so long in the daytime but I'm really torn because she wakes > easily >> and then is " ready to go " for the day. She will NOT go back to sleep and >> she as well as " I " need my sleep. I'm probably not going to push it until >> like Aubrie, she shows a sign of wanting to. Some mornings, the Good > Night >> is completely dry, other times, it's sopping. No rhyme or reason; she's >> always fed the same (still tube fed)... >> >> Good luck with everything, I think it's AWESOME that Aubrie thought of >> that on her own. >> Good luck! >> >> >> >> >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Michele, Wow, she's just wonderful. Patty uses and alarm clock that is called the Sonic Boom. It is loud enough for her to hear and also as this part that she puts under her mattress and shakes her bed. Her bedroom is two floors below ours though. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Michele, Congrats to you and Aubrie from West Oz! What a little star she is! Sharon >Michele, >She IS amazing!!! How wonderful. Let her know (if you think it >will help) that we are rooting for her!! >pam > >Pamela J. , M.A., CAGS >Licensed Educational Psychologist >Perkins School for the Blind, Deafblind Program >175 North Beacon St. >Watertown, MA 02472 > >> ---------- >> From: CHARGE on behalf of Michele Westmaas >> Reply To: CHARGE >> Sent: Wednesday, February 15, 2006 9:12 AM >> To: CHARGE >> Subject: RE: night-time potty plan >> >> My daughter is amazing. DJ heard her get up at 10:30 and 1:30 the other >> night. So last night, I tried to wake her at 9 with no success. Then I >> tried at 10:30 -- yes! She woke up and pottied. Same at 1:30! You should >> have seen her sleepy beaming smile! We didn't get up again hoping that she >> was " empty " . She did wet her pullup a bit, but she was thrilled with >> herself this am. She understands that it will take some time for her body >> to get the idea of what we want it to do. This was just enough success to >> keep her going. How lucky are we that this is working out so well already? >> Knock-on-wood it continues... but of course it will with my little Princess >> calling the shots for herself. >> >> Michele W >> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ >> >> >> >> >> >> 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@... . >> 8th International >> CHARGE Syndrome Conference, July, 2007. 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 16, 2006 Report Share Posted February 16, 2006 I think Sonic Boom is the one that was linked to me her on the list... sorry can't remember who sent it. I have it on my watch list on ebay. It's good to know it's been successful for Patty in case we need to make a decision in that direction. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 hey michlelle give aubrie a hug from me kim i didnt think dylan stil had his gtube or feeds i could be wrong if my ears down on the left right up i can hear ti but if i haven ear phoens or soemthing there i dotn funny isnt it > > I think Sonic Boom is the one that was linked to me her on the list... > sorry > can't remember who sent it. I have it on my watch list on ebay. It's > good > to know it's been successful for Patty in case we need to make a decision > in > that direction. > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > 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@... . > 8th International > CHARGE Syndrome Conference, July, 2007. 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 16, 2006 Report Share Posted February 16, 2006 That's awesome news, ! This will give her the incentive to keep trying it. Way to go, Aubrie! Hope the success continues. , mom to (4) --------------------------------- Relax. Yahoo! Mail virus scanning helps detect nasty viruses! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Hi Ellen, Dylan is still total tube fed. Drip at night, bolus during the day plus " eating " food at school or as desired at home. He does not get enough to even call it a real snack. Kim > hey michlelle give aubrie a hug from me kim i didnt think dylan stil had his > gtube or feeds i could be wrong if my ears down on the left right up i can > hear ti but if i haven ear phoens or soemthing there i dotn funny isnt it > > >> >> I think Sonic Boom is the one that was linked to me her on the list... >> sorry >> can't remember who sent it. I have it on my watch list on ebay. It's >> good >> to know it's been successful for Patty in case we need to make a decision >> in >> that direction. >> >> Michele W >> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ >> >> >> >> 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@... . >> 8th International >> CHARGE Syndrome Conference, July, 2007. Information will be available at >> www.chargesyndrome.org or by calling 1-. >> Quote Link to comment Share on other sites More sharing options...
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