Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 I have tried to read a bit here and there after our vacation but am getting bogged down. Now I have over 800 posts. There is no way I am reading all of them. Sorry if I miss something important but I just have to delete many and start from scratch again. Things have been busy here. My job has started to get intense, I have decided to go back to school and have to do the research to find a cost effective way, there have been a few friends in need and there's Patty! Right now Patty is doing training in computers at Easter Seals in Boston. I drive her in to the commuter rail early in the morning and off she goes to the city. Now that she has the pattern down she is totally independent. I can't describe how wonderful it feels to watch her walk to the platform with everyone else to hop on that train. It is totally amazing. Add to that it has been so cold here and yet she remains aware and safe. She's one brave and independant woman. I do not worry about her at all during the day. When done she hops on the train to go back to the town I work in. The timing is perfect and she has to wait very little for me. Her independence is just so wonderful. Not only that she is feeling great about herself now that she is beginning to be active again. She was having mood swings and was starting to feel very lonely. This is just one step but it has been an important one. We get home around 4 and she has developed her patterns to care for her dog, do her chores, have time for herself, and then it's off to bed to start a great day again. I am more than proud of her. We had tried to go the deaf/blind route only but are more than pleased with Easter Seals and what they are doing. We received her evaluation and it is obvious they do not totally comprehend her disability (few do) but they do not let that limit their understanding of her. They are stepping outside that box. As we all should inform each other of what doesn't work we also need to share what does. Although the Easter Seals in CT didn't have appropriate programs for Patty, and told us so, I am finding that they are all different depending on the needs in their specific areas. This one fits Patty. I only wish there were someone in the background to help educate those on her needs and all. It'll come. Obviously that is the good news. The opposite of that is we are still struggling to find independant living, an apartment and such, and other appropriate supports for her to increase her independence. We are taking it one step at a time and now need to find the next step. I wish it were easier but it isn't impossible. Things are improving here. I hope everyone is finding the same. Since I can't read all your posts I'll just wish in my heart that everyone her knows how much I care about all of you and everything you are all living through. Take care, Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Bonnie, Thank you for the update on Patty. That is so fantastic that she has found some independence. I'll keep you in my thoughts as you continue to find options for her to live independently. God bless, B, mom to Zach 4.5 yrs and Carmen 20 mths (CHARGE) > > I have tried to read a bit here and there after our vacation but am getting > bogged down. Now I have over 800 posts. There is no way I am reading all of > them. Sorry if I miss something important but I just have to delete many and > start from scratch again. > > Things have been busy here. My job has started to get intense, I have > decided to go back to school and have to do the research to find a cost effective > way, there have been a few friends in need and there's Patty! > > Right now Patty is doing training in computers at Easter Seals in Boston. I > drive her in to the commuter rail early in the morning and off she goes to the > city. Now that she has the pattern down she is totally independent. I can't > describe how wonderful it feels to watch her walk to the platform with > everyone else to hop on that train. It is totally amazing. Add to that it has been > so cold here and yet she remains aware and safe. She's one brave and > independant woman. > > I do not worry about her at all during the day. When done she hops on the > train to go back to the town I work in. The timing is perfect and she has to > wait very little for me. Her independence is just so wonderful. > > Not only that she is feeling great about herself now that she is beginning to > be active again. She was having mood swings and was starting to feel very > lonely. This is just one step but it has been an important one. We get home > around 4 and she has developed her patterns to care for her dog, do her chores, > have time for herself, and then it's off to bed to start a great day again. > > I am more than proud of her. We had tried to go the deaf/blind route only > but are more than pleased with Easter Seals and what they are doing. We > received her evaluation and it is obvious they do not totally comprehend her > disability (few do) but they do not let that limit their understanding of her. They > are stepping outside that box. As we all should inform each other of what > doesn't work we also need to share what does. Although the Easter Seals in CT > didn't have appropriate programs for Patty, and told us so, I am finding that > they are all different depending on the needs in their specific areas. This one > fits Patty. I only wish there were someone in the background to help educate > those on her needs and all. It'll come. > > Obviously that is the good news. The opposite of that is we are still > struggling to find independant living, an apartment and such, and other appropriate > supports for her to increase her independence. We are taking it one step at a > time and now need to find the next step. I wish it were easier but it isn't > impossible. > > Things are improving here. I hope everyone is finding the same. Since I > can't read all your posts I'll just wish in my heart that everyone her knows how > much I care about all of you and everything you are all living through. > > Take care, > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Bonnie, That is so great that things are going well and Welcome back!! I am so gald Patty can do so much and is so independant. I am so happy for both of you. Hugs, Crystal mom to, (10), (2), and Eva (10 month charger), and wife to Dan (for 9 years now) > > I have tried to read a bit here and there after our vacation but am getting > bogged down. Now I have over 800 posts. There is no way I am reading all of > them. Sorry if I miss something important but I just have to delete many and > start from scratch again. > > Things have been busy here. My job has started to get intense, I have > decided to go back to school and have to do the research to find a cost effective > way, there have been a few friends in need and there's Patty! > > Right now Patty is doing training in computers at Easter Seals in Boston. I > drive her in to the commuter rail early in the morning and off she goes to the > city. Now that she has the pattern down she is totally independent. I can't > describe how wonderful it feels to watch her walk to the platform with > everyone else to hop on that train. It is totally amazing. Add to that it has been > so cold here and yet she remains aware and safe. She's one brave and > independant woman. > > I do not worry about her at all during the day. When done she hops on the > train to go back to the town I work in. The timing is perfect and she has to > wait very little for me. Her independence is just so wonderful. > > Not only that she is feeling great about herself now that she is beginning to > be active again. She was having mood swings and was starting to feel very > lonely. This is just one step but it has been an important one. We get home > around 4 and she has developed her patterns to care for her dog, do her chores, > have time for herself, and then it's off to bed to start a great day again. > > I am more than proud of her. We had tried to go the deaf/blind route only > but are more than pleased with Easter Seals and what they are doing. We > received her evaluation and it is obvious they do not totally comprehend her > disability (few do) but they do not let that limit their understanding of her. They > are stepping outside that box. As we all should inform each other of what > doesn't work we also need to share what does. Although the Easter Seals in CT > didn't have appropriate programs for Patty, and told us so, I am finding that > they are all different depending on the needs in their specific areas. This one > fits Patty. I only wish there were someone in the background to help educate > those on her needs and all. It'll come. > > Obviously that is the good news. The opposite of that is we are still > struggling to find independant living, an apartment and such, and other appropriate > supports for her to increase her independence. We are taking it one step at a > time and now need to find the next step. I wish it were easier but it isn't > impossible. > > Things are improving here. I hope everyone is finding the same. Since I > can't read all your posts I'll just wish in my heart that everyone her knows how > much I care about all of you and everything you are all living through. > > Take care, > > > Bonnie, mom to a 23, Patty CHARGE 21, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Glad you're back again. Sounds like it's just been an incredibly busy time! Of course, it's great to hear how successful Patty's experience has been at Easter Seals. You never know where you'll find the right support. It's a function of the program itself, the flexibility within it, and the people involved -- all things you can't tell til you really investigate. For me, it often takes a leap of faith to allow people into our lives -- like the local, inexperienced SLP who turned out to be critically important in our weaning from the Gtube. And many of Aubrie's best experiences have been in non-disability programs -- like karate and horseback riding. I find that I am more and more open to the possibilities now that we've had success come in many different packages. I hope the same is true for Patty as you guys continue to explore the possibilities near you. BTW-- I've talked to Patty by phone a few times. Call me when the time is good for you, ok? 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 March 6, 2006 Report Share Posted March 6, 2006 Glad you're back again. Sounds like it's just been an incredibly busy time! Of course, it's great to hear how successful Patty's experience has been at Easter Seals. You never know where you'll find the right support. It's a function of the program itself, the flexibility within it, and the people involved -- all things you can't tell til you really investigate. For me, it often takes a leap of faith to allow people into our lives -- like the local, inexperienced SLP who turned out to be critically important in our weaning from the Gtube. And many of Aubrie's best experiences have been in non-disability programs -- like karate and horseback riding. I find that I am more and more open to the possibilities now that we've had success come in many different packages. I hope the same is true for Patty as you guys continue to explore the possibilities near you. BTW-- I've talked to Patty by phone a few times. Call me when the time is good for you, ok? 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 March 6, 2006 Report Share Posted March 6, 2006 Glad you're back again. Sounds like it's just been an incredibly busy time! Of course, it's great to hear how successful Patty's experience has been at Easter Seals. You never know where you'll find the right support. It's a function of the program itself, the flexibility within it, and the people involved -- all things you can't tell til you really investigate. For me, it often takes a leap of faith to allow people into our lives -- like the local, inexperienced SLP who turned out to be critically important in our weaning from the Gtube. And many of Aubrie's best experiences have been in non-disability programs -- like karate and horseback riding. I find that I am more and more open to the possibilities now that we've had success come in many different packages. I hope the same is true for Patty as you guys continue to explore the possibilities near you. BTW-- I've talked to Patty by phone a few times. Call me when the time is good for you, ok? 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 March 7, 2006 Report Share Posted March 7, 2006 hey how r u ive missed you wondered where you are glad pattys so well im ok am having period problems and need to srot it out as u knwo im on provera to stop it and its not helping eather i wait to review fift of april which isnt to far away or we try to get one sooner see which happnes first lol hugs ellen > > Glad you're back again. Sounds like it's just been an incredibly busy > time! > Of course, it's great to hear how successful Patty's experience has been > at > Easter Seals. You never know where you'll find the right support. It's a > function of the program itself, the flexibility within it, and the people > involved -- all things you can't tell til you really investigate. For me, > it often takes a leap of faith to allow people into our lives -- like the > local, inexperienced SLP who turned out to be critically important in our > weaning from the Gtube. And many of Aubrie's best experiences have been > in > non-disability programs -- like karate and horseback riding. I find that > I > am more and more open to the possibilities now that we've had success come > in many different packages. I hope the same is true for Patty as you guys > continue to explore the possibilities near you. > > BTW-- I've talked to Patty by phone a few times. Call me when the time is > good for you, ok? > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 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 March 9, 2006 Report Share Posted March 9, 2006 Bonnie that is great to hear! and make sure you pass on to Patty all the bad things we are saying about her lol, j/k its great she can go get the train by herself now, Did she have some training for it or did you just show her? Belinda > > hey how r u ive missed you wondered where you are glad pattys so well im > ok > am having period problems and need to srot it out as u knwo im on provera > to > stop it and its not helping eather i wait to review fift of april which > isnt > to far away or we try to get one sooner see which happnes first lol hugs > ellen > > > > > > Glad you're back again. Sounds like it's just been an incredibly busy > > time! > > Of course, it's great to hear how successful Patty's experience has been > > at > > Easter Seals. You never know where you'll find the right support. It's > a > > function of the program itself, the flexibility within it, and the > people > > involved -- all things you can't tell til you really investigate. For > me, > > it often takes a leap of faith to allow people into our lives -- like > the > > local, inexperienced SLP who turned out to be critically important in > our > > weaning from the Gtube. And many of Aubrie's best experiences have been > > in > > non-disability programs -- like karate and horseback riding. I find > that > > I > > am more and more open to the possibilities now that we've had success > come > > in many different packages. I hope the same is true for Patty as you > guys > > continue to explore the possibilities near you. > > > > BTW-- I've talked to Patty by phone a few times. Call me when the time > is > > good for you, ok? > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > 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 > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 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 March 9, 2006 Report Share Posted March 9, 2006 Bonnie that is great to hear! and make sure you pass on to Patty all the bad things we are saying about her lol, j/k its great she can go get the train by herself now, Did she have some training for it or did you just show her? Belinda > > hey how r u ive missed you wondered where you are glad pattys so well im > ok > am having period problems and need to srot it out as u knwo im on provera > to > stop it and its not helping eather i wait to review fift of april which > isnt > to far away or we try to get one sooner see which happnes first lol hugs > ellen > > > > > > Glad you're back again. Sounds like it's just been an incredibly busy > > time! > > Of course, it's great to hear how successful Patty's experience has been > > at > > Easter Seals. You never know where you'll find the right support. It's > a > > function of the program itself, the flexibility within it, and the > people > > involved -- all things you can't tell til you really investigate. For > me, > > it often takes a leap of faith to allow people into our lives -- like > the > > local, inexperienced SLP who turned out to be critically important in > our > > weaning from the Gtube. And many of Aubrie's best experiences have been > > in > > non-disability programs -- like karate and horseback riding. I find > that > > I > > am more and more open to the possibilities now that we've had success > come > > in many different packages. I hope the same is true for Patty as you > guys > > continue to explore the possibilities near you. > > > > BTW-- I've talked to Patty by phone a few times. Call me when the time > is > > good for you, ok? > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > 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 > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.