Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 HI, I found out about CHARGE last summer. When our daughter was small they didn't know what to call her problems. She just celebrated her 18th birthday in September. The early years were terrifying but she is doing very well now. She is a high school senior and will be off to college next year. We would like to hear from parents of other CHARGE teens. doesn't want to dwell on it and I don't blame her. She just wants to be an active teen. As a parent I hope to learn more about reserch etc. It's nice to know there are other families to share with. LEM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 Hi, LEM-- We're so glad to have you! Please tell us more about ! My daughter, Aubrie, will be 5 in Nov. She has nearly normal vision in one eye, but extremely limited vision in the other. She has mild-mod loss in one ear, severe in the other, but hears quite well in at least one ear with her aids. Her muscle tone is low, all motor skills (fine, gross, and oral) are somewhat delayed and/or inefficient, but she runs, jumps, plays, takes dance class, etc with her friends. She has trouble in a few academic areas (like inconsistent color naming), but in most is demonstrating skills at age-level or above. She's very close to reading. She began with total communication as an infant, signed before she spoke, but now she is an oral communicator. Her speech is difficult to understand but is improving all of the time. She was tube fed til age 1.5 yrs but is now a completely competent oral eater. As you said with , the early years (1-2) were terrifying. I was so afraid of what her future held. Now I am becoming more and more confident that she will have a " normal " life. Still though, I wonder what " normal " will be for her. More and more adults and teens with CHARGE have been finding the list. Their stories are of immeasurable importance to those of us with younger kids. You have the unique ability to give us a glimpse into our children's future possibilities. Please tell us more about 's history and give us a picture of who she is now. I would love it so much if Aubrie could ignore CHARGE and just enjoy being a kid, a teen, and an woman. Michele W mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs), wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 Hi, LEM-- We're so glad to have you! Please tell us more about ! My daughter, Aubrie, will be 5 in Nov. She has nearly normal vision in one eye, but extremely limited vision in the other. She has mild-mod loss in one ear, severe in the other, but hears quite well in at least one ear with her aids. Her muscle tone is low, all motor skills (fine, gross, and oral) are somewhat delayed and/or inefficient, but she runs, jumps, plays, takes dance class, etc with her friends. She has trouble in a few academic areas (like inconsistent color naming), but in most is demonstrating skills at age-level or above. She's very close to reading. She began with total communication as an infant, signed before she spoke, but now she is an oral communicator. Her speech is difficult to understand but is improving all of the time. She was tube fed til age 1.5 yrs but is now a completely competent oral eater. As you said with , the early years (1-2) were terrifying. I was so afraid of what her future held. Now I am becoming more and more confident that she will have a " normal " life. Still though, I wonder what " normal " will be for her. More and more adults and teens with CHARGE have been finding the list. Their stories are of immeasurable importance to those of us with younger kids. You have the unique ability to give us a glimpse into our children's future possibilities. Please tell us more about 's history and give us a picture of who she is now. I would love it so much if Aubrie could ignore CHARGE and just enjoy being a kid, a teen, and an woman. Michele W mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs), wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 Hi, LEM-- We're so glad to have you! Please tell us more about ! My daughter, Aubrie, will be 5 in Nov. She has nearly normal vision in one eye, but extremely limited vision in the other. She has mild-mod loss in one ear, severe in the other, but hears quite well in at least one ear with her aids. Her muscle tone is low, all motor skills (fine, gross, and oral) are somewhat delayed and/or inefficient, but she runs, jumps, plays, takes dance class, etc with her friends. She has trouble in a few academic areas (like inconsistent color naming), but in most is demonstrating skills at age-level or above. She's very close to reading. She began with total communication as an infant, signed before she spoke, but now she is an oral communicator. Her speech is difficult to understand but is improving all of the time. She was tube fed til age 1.5 yrs but is now a completely competent oral eater. As you said with , the early years (1-2) were terrifying. I was so afraid of what her future held. Now I am becoming more and more confident that she will have a " normal " life. Still though, I wonder what " normal " will be for her. More and more adults and teens with CHARGE have been finding the list. Their stories are of immeasurable importance to those of us with younger kids. You have the unique ability to give us a glimpse into our children's future possibilities. Please tell us more about 's history and give us a picture of who she is now. I would love it so much if Aubrie could ignore CHARGE and just enjoy being a kid, a teen, and an woman. Michele W mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs), wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 Lem, Welcome! As a parent of a four year old girl, it's so great to hear about the older kids with CHARGE doing so well, doing regular kid stuff in high school, etc. I often wonder what life might be like for her. Thanks for writing in, I hope you hear from the other teen's parents, I am sure you will we have a fair number here on the list. ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Found CHARGE HI, I found out about CHARGE last summer. When our daughter was small they didn't know what to call her problems. She just celebrated her 18th birthday in September. The early years were terrifying but she is doing very well now. She is a high school senior and will be off to college next year. We would like to hear from parents of other CHARGE teens. doesn't want to dwell on it and I don't blame her. She just wants to be an active teen. As a parent I hope to learn more about reserch etc. It's nice to know there are other families to share with. LEM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 Lem, Welcome! As a parent of a four year old girl, it's so great to hear about the older kids with CHARGE doing so well, doing regular kid stuff in high school, etc. I often wonder what life might be like for her. Thanks for writing in, I hope you hear from the other teen's parents, I am sure you will we have a fair number here on the list. ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Found CHARGE HI, I found out about CHARGE last summer. When our daughter was small they didn't know what to call her problems. She just celebrated her 18th birthday in September. The early years were terrifying but she is doing very well now. She is a high school senior and will be off to college next year. We would like to hear from parents of other CHARGE teens. doesn't want to dwell on it and I don't blame her. She just wants to be an active teen. As a parent I hope to learn more about reserch etc. It's nice to know there are other families to share with. LEM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2002 Report Share Posted October 4, 2002 Lem, Welcome! As a parent of a four year old girl, it's so great to hear about the older kids with CHARGE doing so well, doing regular kid stuff in high school, etc. I often wonder what life might be like for her. Thanks for writing in, I hope you hear from the other teen's parents, I am sure you will we have a fair number here on the list. ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Found CHARGE HI, I found out about CHARGE last summer. When our daughter was small they didn't know what to call her problems. She just celebrated her 18th birthday in September. The early years were terrifying but she is doing very well now. She is a high school senior and will be off to college next year. We would like to hear from parents of other CHARGE teens. doesn't want to dwell on it and I don't blame her. She just wants to be an active teen. As a parent I hope to learn more about reserch etc. It's nice to know there are other families to share with. LEM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2002 Report Share Posted October 6, 2002 LEM Welcome! My daughter turned 18 this September also. She too is a senior in high school and we are looking at the transition issues right now. She wants to go to college, her school thinks she isn't able to and only wants vocational training. She has other gaps in her leering such as math but with modifications she can do so much. Just give her a calculator and she can be totally independent. Yes, it was hard when she was little but she has come miles, and miles, and miles. But, I don't understand how you only heard of CHARGE recently. Do you mean you only heard of this list recently or has you daughter been diagnosed recently? Whatever it is we are glad to have you here and look forward to your sharing. Bonnie, Mom to Kris 20, Patty CHARGE 18, and wife to Quote Link to comment Share on other sites More sharing options...
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