Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Liana- I'm glad you took the time so say hello. I hope these bad times improve soon -- I'll be sending my best wishes and most positive thoughts your way. I hope to hear more about Talia in the future. 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 14, 2006 Report Share Posted February 14, 2006 Hi Liana, I'm sorry you are having a bad time. It's hard to be thankful for the things we have all the time, especially when we are down! Good luck to you and little Talia. It is nice to have this group to lean on, because they understand more than anyone else on earth how you are feeling. Our kids have to overcome so many obstacles, and I know from these stories and even my own, how proud we all are for the progress that our kids make everyday. The progress is sometimes slower than what we want for them and for their futures and that is frustrating and sad to see--we just have to look at how far they've come! It can be hard to hang in there but good luck and God Bless! , mom to Zachary 4.5 and Carmen 20 months (CHARGE) > > > > > > 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...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Hey Liana, Great to hear from you - Sorry to hear you are going through a bad time. It's been ages since we spoke on the phone - call me sometime if you want to chat. Lots of love to you, Talia & family, Weir Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 I do wish you luck. But I have another story. lol I was at the CHARGE conference where a mother was telling me how sad she was that her daughter couldn't talk and all she wished for was to hear her say Mom or I love you. When I was talking to this woman I was also with another mother and her daughter. This daughter didn't speak either. She is older and signs. What the first mother couldn't' see is that the older daughter was talking and talking and talking and then talking some more. She was just doing it in another language - sign! There is yet another mother who has an older child who does not talk and signs very little. Yet this child speaks volumes. I believe it was the love for the mother and daughter that was the most profound. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Bonnie, Yes, 'speaking' takes many forms...and one of the most powerful means of communication can be through touch...and behaviour...I'll never forget an initial assessment I did with a young child and her mother, who had been told by 'the specialists' that her daughter (not CHARGE, but deafblind and severe brain damage) would never be able to communicate in any way whatsoever...how wrong were those doctors!! The way this child engaged with her mother when she held her and looked into her eyes was awesome...definitely telling her mother how much she loved her...the behaviour saying more than a million words ever could! Sharon from West Oz >I do wish you luck. But I have another story. lol > >I was at the CHARGE conference where a mother was telling me how sad she was >that her daughter couldn't talk and all she wished for was to hear her say Mom >or I love you. When I was talking to this woman I was also with another >mother and her daughter. This daughter didn't speak either. She is older and >signs. What the first mother couldn't' see is that the older daughter was >talking and talking and talking and then talking some more. She was >just doing it >in another language - sign! > >There is yet another mother who has an older child who does not talk and >signs very little. Yet this child speaks volumes. I believe it was >the love for >the mother and daughter that was the most profound. > >Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Oh, goodness, I keep trying to go to bed, and here's another post I want to answer. Just realize that this is another one of my really off/tired nights (i.e., I hate anything that smacks of an interview at this stage and am terribly wired). As you know, I grew up in a family of psychiatrists, one very well known dr at that. My father wrote the main endorsement for Selma Freiberg's (I know I have the name wrong) work on blind children with Dave Freedman (and lord help me, I have his last name wrong, too, though one of his son's is 1 day older than I, and Dave is what prompts this dinghy reply.) My brother put me in touch with Dave soon after 's birth. Dave's daughter was born deaf, and I'll always believe that the family left New Orleans for Houston because much better services were available. Anyway, I knew that had smiled at me (this was when all drs in MO swore that she was blind), and Dave gave me whatever the developmental line was in 1984 about smiling; he said that it wasn't developmentally possible. He was wrong! reacted with great glee not only with me but also with others, especially youngsters. This was the beginning of my learning to trust my own gut. I've reported here in the past of a dr's appt. in Boston while was still at Perkins. Andy and I, Pam , and K's teacher were there. sat on her parents' laps, and I was so upset because I just knew this wasn't " age appropriate. " Forget that. Pam and teacher were fine with it --- and reading these posts, I think of bonding and communication. I want to scream to everyone, let the love shine through! That's where you'll build communication. On that, a good night to all. Martha Sorry to be so long winded, but I was so up tight for so many years about the very natural love and communication was trying to share that I'd like to help all of us avoid the pitfalls... We are parents. Andy corrects me now whenever I call a child, but she IS my child. Love, even through great pain, I think that's how we build our bonds with our kids. Quote Link to comment Share on other sites More sharing options...
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