Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Liana, When you say a hard time, are you referring to sadness/depression, because she cannot speak or simply that there is too much going on right now? On the speech - there are so many factors involved with CHARGE and many do not speak or sign until much later than we might expect. It is more important that she have the understanding of what is going on around her, because even though you can't see the results now, it is laying the foundation for all her expressive communication later! Also, having therapists who can sort out all the variables involved, vision, hearing, processing ability, " autistic like responses " that require a different intervention and so on. Tell us more and maybe we can help better. In the meantime, hugs to you. Kim > > Hi everyone, > > Its Liana mother of Talia a 4 and a half year old > charge girl. Have not had much the opportunity to > chat. Im going through a bad time now. Talia still > does not speak. she is on daaa maaa etc. Very > energetic though. > > Take care > wish us luck > > > --- CHARGE wrote: > >> There are 25 messages in this issue. >> >> Topics in this digest: >> >> 1. Re: night-time potty plan >> From: Flo Njeru >> >> 2. RE: night-time potty plan >> From: " Michele Westmaas " >> >> 3. RE: night-time potty plan >> From: " Michele Westmaas " >> >> 4. Re: Happy Birthday, Makenna Susil!! >> >> 5. Re: Good news >> From: _Belinda _ >> >> 6. Re: Re: Happy Birthday, Makenna Susil!! >> From: _Belinda _ >> >> 7. Re: Re: " charge " feet >> From: _Belinda _ >> >> 8. Re: Good news >> >> 9. Re: Re: Happy Birthday, Makenna Susil!! >> From: _Belinda _ >> >> 10. Re: Happy Birthday, Makenna Susil!! >> >> 11. Re: Re: Happy Birthday, Makenna Susil!! >> From: _Belinda _ >> >> 12. RE: Re: Happy Birthday, Makenna Susil!! >> From: " Michele Westmaas " >> >> 13. RE: night-time potty plan >> >> 14. Food in the ears >> >> 15. Re: Re: Happy Birthday, Makenna Susil!! >> From: kingtias@... >> 16. Bumbo Seat - Pat >> >> 17. Speech Development Question/Cognitive >> Understanding >> >> 18. Re: night-time potty plan >> >> 19. RE: Speech Development Question/Cognitive >> Understanding >> From: " Michele Westmaas " >> >> 20. Re: " charge " feet >> >> 21. Re: Happy Birthday, Makenna Susil!! to >> Belinda >> >> 22. Re: Speech Development Question/Cognitive >> Understanding >> >> 23. RE: Re: night-time potty plan >> From: " Michele Westmaas " >> >> 24. Re: Happy Birthday Makenna Susil!! >> >> 25. Re: Re: Happy Birthday, Makenna Susil!! >> >> >> >> > ________________________________________________________________________ >> > ________________________________________________________________________ >> >> Message: 1 >> Date: Mon, 13 Feb 2006 23:17:02 +0000 >> >> Subject: 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! >>> >>> >>> >>> >>> >>> >>> >> >> >> [Non-text portions of this message have been >> removed] >> >> >> >> > ________________________________________________________________________ >> > ________________________________________________________________________ >> >> Message: 2 >> Date: Mon, 13 Feb 2006 17:50:52 -0600 >> From: " Michele Westmaas " >> >> Subject: RE: night-time potty plan >> >> I wondered about that. I hate to buy something >> special after spending money >> on this regular one. And of course it was trash >> night so we through the >> package away. If she doesn't begin to hear it soon, >> we'll have to change to >> the vibrating one. Thanks for the link. >> >> Michele W >> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife >> to DJ >> >> Re: night-time potty plan >> >> 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! >> >> >> >> >> >> >> >> [Non-text portions of this message have been >> removed] >> >> >> >> 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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