Guest guest Posted March 11, 2005 Report Share Posted March 11, 2005 , I know you're short of time, but if you have a chance, visit Kennedy's site. It gives a pretty clear picture of her life: the therapies she's had, the surgeries, how she's doing now, pictures, etc. It really shows how far she's come. I think she's amazing, then again, I'm extremely biased. I just spent 5 hours updating everything last night (badly needed!) - the url is http://ca.geocities.com/weirfamilyrogers/kennedy.html Weir Mom to Kennedy, 7 yr old with CHARGE, 15, 13, and wife to Graeme. New Brunswick, CANADA Visit us online – http://ca.geocities.com/weirfamilyrogers lisaweir@... Tebble wrote: Ooooooooooo ... Thank you Thank you... I will be looking for that book and doing exactly that... (buggar the photocopy police LOL) How is your daughter going.. can I ask what parts of CHARGE she has? Hayley has C.H.A.E... guessing the R is there..... G is fine Guessing one out of five aint bad :-) x > , > There are lots of great books out there; I used " Signing Illustrated " by > Mickey Flodin when I was starting out. I liked the fact that they > explained " why " the signs were what they were, it helped me to remember > them. Another thing we did (hope there's no photocopy police LOL) - was > to photocopy the signs for everything, lamp, chair, bed, wall, door, you > name it, and stuck it around the house on the object. Everytime you > looked at it, it reinforced the signs. There are also many wonderful > signing books for children - do a search on amazon.com , I'm sure you'll > find tons. > Another thing we used with Kennedy was " Signing Time " videos - they are > for learning very basic signs - the videos are very much geared towards > kids, quick, colourful, musical, etc. Kennedy loved them. There is a > whole series: the URL is: http://www.signingtime.com/ > It's a little girl, Leah, who is deaf, with her cousin, , who is > hearing. > > Just pace yourself, you can't do everything at once, you might hit burn > out. I used to try to learn 1 or 2 signs a week that really pertained to > her life (i.e. " toys " and " bed " ) then I would use those signs as much as > possible for a week or two til I felt really comfortable, then moved > on.... > Good luck > > Weir > > Mom to Kennedy, 7 yr old with CHARGE, 15, 13, > > and wife to Graeme. > > New Brunswick, CANADA > > Visit us online – http://ca.geocities.com/weirfamilyrogers > > lisaweir@... > > > > > Tebble wrote: > > Hi , > > Thanks for writing back. > > I will looking into respite care in the area... > > Certainly looking forward to things getting easier. > > do you know of any books that have been recommended for sign > language? Found out the other day that Hayley is profoundly deaf and cant > get a cochlear implant as she has no nerve fibres for the cochlear to run > thru. > > x >> >> , >> There are definitely some folks from Australia here on the listserv; I'm >> sure they'll pop in when they see your message. Regarding finding time: >> it is difficult, particularly in the early times. I found I had to find >> the trust to let others help me so I could spend time with my other two >> boys and my husband. Is there any type of respite care available where >> you are? Maybe you could look into it and plan something for you, your >> hubby & your boys while your daughter is with the respite care >> worker/nurse/trusted family member or friend/etc. It is definitely an >> effort, but hopefully things will improve and you will have more time >> together as Ashleigh gets older. >> Hugs from Canada, >> >> Weir >> >> Mom to Kennedy, 7 yr old with CHARGE, 15, 13, >> >> and wife to Graeme. >> >> New Brunswick, CANADA >> >> Visit us online – http://ca.geocities.com/weirfamilyrogers >> >> lisaweir@... >> >> >> >> >> Tebble wrote: >> >> Hi all, >> >> I am new to this group. >> >> I have a daughter who is one year of age and was diagnosed with CHARGE >> at >> birth. >> >> She is a beautiful treasure that I love very much. She takes up24/7 of >> my >> time, doesnt leave me much time for myself and the rest of my family. I >> have a two older boys 15 and 12 yrs old, ooo and yes and my husband. Is >> there anyone that can advise me on how they made time for there other >> famiy members >> >> Also, I was just wondering if there was anyone else that come to this >> group that is from Australia?? >> >> Kind regards, >> >> >> >> >> >> 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...
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