Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Hi all. I've missed all of you but want you to know I always think of everyone and pray for you here. I haven't been on the list for many, many reasons. This is probably going to be the only time in the next few weeks that I'll be able to write. The first and hardest thing that changed our lives was that my oldest daughter had a breakdown. This has been quite an emotional time and I felt terrible with what she's been going through. Apparently being in her last year for her masters in speech and language was tough. She had 6 grad courses, had to do 100 hours of clinic and also had a placement. It was way too much. She was burning that candle on too many ends. She's also an intense student who achieves to the fullest usually getting A's for everything. That's a high standard few can live up to. Add to that she's an incredibly sensitive person who is also incredibly moralistic. And sadly add to that she's been an older sibling to a sister who has CHARGE. Though Patty is tremendously wonderful there still was that CHARGE stuff that was out of our hands. Even more sad is Kris needed me at times where I didn't see the need. I missed her struggles, because she hid them. She felt guilty that her problems didn't equal Patty's so she kept quiet. But her struggles were and are HER struggles. They were and are just as important as Patty's. Everything's relative. Thankfully she is now doing very well but still needs time to get things back into perspective. She's on her path once again in focusing on her future. This time her future does not have to be perfect and is in her own hands. She asked me to share because she wants other parents to know what happened to her so that you all might learn for your other children. Kris was and is the happiest and most wonderful individual there is. Again, she hid her emotional struggles. She did that well too. Her doctor, teachers, and family members always told me she was fabulously stable. Who knew?! With that she wants all of you to know that therapy works wonders now and then and it's not to early to start even if you don't think it's needed. And now about Patty. So far her health has been good. She's had a bit of a cold but that's all it was. She also hasn't had any ear infections since her surgery. She usually gets about four a year. We also had a meeting with the commissioner for the Deaf/Blind and her case worker. They agreed to send Patty back to Easter Seals to continue forward in finding her a different job, an appropriate job. We couldn't be more pleased as Easter Seals in Boston has been more than exceptional for Patty. They have positively changed her life and her outlook. I could not speak highly enough of them. With their interaction Patty's dreams and desires came back. But... it still is always push and shove to get things going. With that I have been reflecting a great deal lately. What happened to Kris brought back so many unhappy memories. The illnesses of course were horrible. But they were illnesses. You go to a doctor and they deal with it the best they can or they send you to a new doctor, and then another or another.... In reality it is the total lack of understanding, services, and struggles we have had to wage through just to get Patty her own life which are the most unhappy memories. Those trying times had a dramatic negative impact not only on Patty but all of us. These were things we should not have had to fight for. I do not regret we did what was needed for Patty as she wouldn't be as far as she is but the toll it took on all of us is what angers me. I regret my children had to experience what they did. These battles were educational and/or for services. It is also sadly true that if Patty were either more abled or more disabled life would be easier. That's a hard statement but beyond true. If she were more disabled she'd have a chance for some living opportunities separate from us here at home. If she were more abled she'd be on her way and out of the house. But none of that is true for Patty. She remains the " tweener " as we call it. She's always in between categories for everything. I am finding basically two reasons for the struggles we went or are going through. The first is funding. Funding is allocated in unique ways. And that battle for funding is intense. The other is lack of information, narrow mindedness and/or arrogance. Looking back I believe I made a huge mistake. For years I have been singing the tune that Patty and our children fit the deaf/blind category. While I absolutely still believe this I also can absolutely say that was directly through those in the deaf/blind field that made our lives difficult when it shouldn't have been that way. It was and is the deaf/blind services that also have impacted my family. It wasn't only negative for Patty but also for Kris. I shouldn't have had to spend so much time looking for answers when those who had them could shared the information instead of me searching so hard. Because of that I was wrong. I should not guide all of you into a direction where you all might experience the same. Yes there are many, many gifted specialists in the deaf/blind field throughout the country. But be aware of what people say verses what they do. For those of you who don't have the deaf/blind label, although I feel it is the right one for most that's ok. Get the services from those individuals and programs who will step outside their boxes and help your children to reach for their fullest potential. They are out there. Sad to say it took me 22 years to look further than deaf/blind. I am saddened by the negative occurrences we lived with. It was the lack of understanding by those in CT of what CHARGE, deaf/blind and how Patty meet those that negatively impacted our entire lives. Then came the adult services. It got harder. Patty continued to have negative experiences including trying two times to get some benefit from an adult program but finding the opposite of what should have benefited her. Although all of these might know deaf/blind they sure didn't know CHARGE, especially the emotional/behavioral aspect. Again that negatively impacted our entire lives. They are learning but not in time for Patty. And now here she is. There remain hardships. It doesn't have to be this way. It shouldn't be for your children either. We are parents and people who have CHARGE. We aren't programs or providers. We are more important and more truthful. It can and will be different for all of you. It's a blessing my family remained as healthy as we did for so long. And we are on our way to that again, this time differently but truer then ever before. Life is moving forward to new directions. So now....... because I am totally let down by those in the field of deaf/blindness I am looking for help elsewhere. While we remain in looking to those in the deaf/blind field (they aren't all bad, really!) we are also joining national associations for the blind, national associations for the deaf, and so on. I now believe all these need to join together to be of the most benefit for our children, all our children. Our children aren't just deaf/blind, that is a subcategory. Our children have CHARGE! And now for two last things, first in my believing our battles with those in the field of deaf/blindness were fruitless with most I emphatically and loudly now and always sing the praises for those at Perkins in the deaf/blind programs. They aren't perfect, but no where is. They are CHARGE experts. They do have answers. There are people out there like Tim who are experts and have answers. There are others who are experts as well. And incredibly they usually say they don't know all the answers. Any time anyone anywhere tells you they KNOW or are experts -run like the wind! The last thing is for a few lurkers out there and not you parents, or others who don't lurk. Knowing this is a small world I would like to say that I don't care WHAT Patty is, I don't care about anything except that she finds happiness, fulfillment, love and joy in her life. That is all that I dream for her. I do care though if people, in any profession or volunteer at any program, try to guide Patty to what they believe and/or feel instead of letting her find her own answers- herself! And once she finds her answers I will always be happy and proud of her. I always have been and I will always be. It's saddens me if anyone who believes or says different. They just don't know me then. So now I've written my book again! Please in reading this know our lives are good. They are really good. Although this reads as negative our lives are much more than that. Sure there have been a few negative occurrences in our lives but there's been much more to add to that. There's been good and many great things. It is the struggles that make us stronger. There is a beautiful future for all of us. It's just a different path we take. But a beautiful one at that. I'll bounce back in here in a week or two. Until then know I'll be praying for all of you. You all are my second family. I do miss you. Please hold all your children close. Life is good. Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Hi Bonnie, You know we have been thinking of you. Dear sweet Kris. I hope she has the time to refresh. I wish all of you could go south to pristine beaches, to let the sun and tropical breezes renew you, to just stop the world for awhile. Of course, I feel your challenges so personally, knowing we're just a step or two behind you. We're trying to be another voice to the reality of the complexity of Charge. They say they understand. You show that, clearly, they don't. That's very disappointing. Nothing new, but still, disappointing. Without having to ever relive the disappointing experiences, I wonder if the next time you can post, you could say what it is that they need to do, could do, to make life work for Patty. I can sense alot of what's happening. Finding a living situation that is compatible with Patty's high functioning must be difficult. And a work situation, as well. Over, and over, and over through the years, I've said " you don't understand.... 'you're not seeing it " . you're missing it. it's not that simple...it's not how you think it is. " And you're exactly right. Deaf/blind doesn't cover it by any means. Charge covers it- but only we know what that really means. I believe some of the people who are directing feel I'm babying her or underestimating her, that I have the problem accurately assessing her abilities and her needs. I feel they've been at it so long, they don't even realize the extent of supports they provide at every given moment. And to think that she's going to step out of this sheltered, 100% supportive environment, and all of a sudden do all of that providing for herself by herself, and that " oh well, if she's anxious and mouthy or angry when the stress gets overwhelming-give her a pill " !!!???!! What!!!!! Well sure, she's still in a world of shit, attempting to call on executive skill sets that she can't connect to-but hey, at least she's quiet about it. Bull. But, we'll never get the supports we need until we can clearly define what they are. So, pretend you had an order sheet, and you could call up and get every support she needs. *** What specifically, would you call for. *** That warehouse has everything in it, and it's all free. What would you order? I'll work at doing the same. And everybody else who can do this too for the young adult kids-specific tools and services. And in the meantime, prayers for the continued healing for all, in Ma. (, 21 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Bonnie, until I read this I didn't realize how much I missed you bits of wisdom. not that I din't miss you, I did, but your insight is always missed. does that make sense? love ya girl!! hugs to all! maria A quick hello Hi all. I've missed all of you but want you to know I always think of everyone and pray for you here. I haven't been on the list for many, many reasons. This is probably going to be the only time in the next few weeks that I'll be able to write. The first and hardest thing that changed our lives was that my oldest daughter had a breakdown. This has been quite an emotional time and I felt terrible with what she's been going through. Apparently being in her last year for her masters in speech and language was tough. She had 6 grad courses, had to do 100 hours of clinic and also had a placement. It was way too much. She was burning that candle on too many ends. She's also an intense student who achieves to the fullest usually getting A's for everything. That's a high standard few can live up to. Add to that she's an incredibly sensitive person who is also incredibly moralistic. And sadly add to that she's been an older sibling to a sister who has CHARGE. Though Patty is tremendously wonderful there still was that CHARGE stuff that was out of our hands. Even more sad is Kris needed me at times where I didn't see the need. I missed her struggles, because she hid them. She felt guilty that her problems didn't equal Patty's so she kept quiet. But her struggles were and are HER struggles. They were and are just as important as Patty's. Everything's relative. Thankfully she is now doing very well but still needs time to get things back into perspective. She's on her path once again in focusing on her future. This time her future does not have to be perfect and is in her own hands. She asked me to share because she wants other parents to know what happened to her so that you all might learn for your other children. Kris was and is the happiest and most wonderful individual there is. Again, she hid her emotional struggles. She did that well too. Her doctor, teachers, and family members always told me she was fabulously stable. Who knew?! With that she wants all of you to know that therapy works wonders now and then and it's not to early to start even if you don't think it's needed. And now about Patty. So far her health has been good. She's had a bit of a cold but that's all it was. She also hasn't had any ear infections since her surgery. She usually gets about four a year. We also had a meeting with the commissioner for the Deaf/Blind and her case worker. They agreed to send Patty back to Easter Seals to continue forward in finding her a different job, an appropriate job. We couldn't be more pleased as Easter Seals in Boston has been more than exceptional for Patty. They have positively changed her life and her outlook. I could not speak highly enough of them. With their interaction Patty's dreams and desires came back. But... it still is always push and shove to get things going. With that I have been reflecting a great deal lately. What happened to Kris brought back so many unhappy memories. The illnesses of course were horrible. But they were illnesses. You go to a doctor and they deal with it the best they can or they send you to a new doctor, and then another or another.... In reality it is the total lack of understanding, services, and struggles we have had to wage through just to get Patty her own life which are the most unhappy memories. Those trying times had a dramatic negative impact not only on Patty but all of us. These were things we should not have had to fight for. I do not regret we did what was needed for Patty as she wouldn't be as far as she is but the toll it took on all of us is what angers me. I regret my children had to experience what they did. These battles were educational and/or for services. It is also sadly true that if Patty were either more abled or more disabled life would be easier. That's a hard statement but beyond true. If she were more disabled she'd have a chance for some living opportunities separate from us here at home. If she were more abled she'd be on her way and out of the house. But none of that is true for Patty. She remains the " tweener " as we call it. She's always in between categories for everything. I am finding basically two reasons for the struggles we went or are going through. The first is funding. Funding is allocated in unique ways. And that battle for funding is intense. The other is lack of information, narrow mindedness and/or arrogance. Looking back I believe I made a huge mistake. For years I have been singing the tune that Patty and our children fit the deaf/blind category. While I absolutely still believe this I also can absolutely say that was directly through those in the deaf/blind field that made our lives difficult when it shouldn't have been that way. It was and is the deaf/blind services that also have impacted my family. It wasn't only negative for Patty but also for Kris. I shouldn't have had to spend so much time looking for answers when those who had them could shared the information instead of me searching so hard. Because of that I was wrong. I should not guide all of you into a direction where you all might experience the same. Yes there are many, many gifted specialists in the deaf/blind field throughout the country. But be aware of what people say verses what they do. For those of you who don't have the deaf/blind label, although I feel it is the right one for most that's ok. Get the services from those individuals and programs who will step outside their boxes and help your children to reach for their fullest potential. They are out there. Sad to say it took me 22 years to look further than deaf/blind. I am saddened by the negative occurrences we lived with. It was the lack of understanding by those in CT of what CHARGE, deaf/blind and how Patty meet those that negatively impacted our entire lives. Then came the adult services. It got harder. Patty continued to have negative experiences including trying two times to get some benefit from an adult program but finding the opposite of what should have benefited her. Although all of these might know deaf/blind they sure didn't know CHARGE, especially the emotional/behavioral aspect. Again that negatively impacted our entire lives. They are learning but not in time for Patty. And now here she is. There remain hardships. It doesn't have to be this way. It shouldn't be for your children either. We are parents and people who have CHARGE. We aren't programs or providers. We are more important and more truthful. It can and will be different for all of you. It's a blessing my family remained as healthy as we did for so long. And we are on our way to that again, this time differently but truer then ever before. Life is moving forward to new directions. So now....... because I am totally let down by those in the field of deaf/blindness I am looking for help elsewhere. While we remain in looking to those in the deaf/blind field (they aren't all bad, really!) we are also joining national associations for the blind, national associations for the deaf, and so on. I now believe all these need to join together to be of the most benefit for our children, all our children. Our children aren't just deaf/blind, that is a subcategory. Our children have CHARGE! And now for two last things, first in my believing our battles with those in the field of deaf/blindness were fruitless with most I emphatically and loudly now and always sing the praises for those at Perkins in the deaf/blind programs. They aren't perfect, but no where is. They are CHARGE experts. They do have answers. There are people out there like Tim who are experts and have answers. There are others who are experts as well. And incredibly they usually say they don't know all the answers. Any time anyone anywhere tells you they KNOW or are experts -run like the wind! The last thing is for a few lurkers out there and not you parents, or others who don't lurk. Knowing this is a small world I would like to say that I don't care WHAT Patty is, I don't care about anything except that she finds happiness, fulfillment, love and joy in her life. That is all that I dream for her. I do care though if people, in any profession or volunteer at any program, try to guide Patty to what they believe and/or feel instead of letting her find her own answers- herself! And once she finds her answers I will always be happy and proud of her. I always have been and I will always be. It's saddens me if anyone who believes or says different. They just don't know me then. So now I've written my book again! Please in reading this know our lives are good. They are really good. Although this reads as negative our lives are much more than that. Sure there have been a few negative occurrences in our lives but there's been much more to add to that. There's been good and many great things. It is the struggles that make us stronger. There is a beautiful future for all of us. It's just a different path we take. But a beautiful one at that. I'll bounce back in here in a week or two. Until then know I'll be praying for all of you. You all are my second family. I do miss you. Please hold all your children close. Life is good. Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Hello Bonnie! I wanted to let you know how much I appreciate your- and Kris'- candor in your message. I have 3 kids and am trying very hard not to let the daily frustrations and struggles of battling the world for Rasha (my 17 month old with CHARGE) let me forget the battle for my other 2. You are right when you say that everyone has a fight and no one's fight should overshadow another's. Our situation is interesting in that my 12 year old not only has to deal with being 12 but that she was an only child for nearly 9 years before her brother and sister came along. I must admit that I have nightmares that I will lose her if I'm not giving her the time, attention and support she needs. Teenage girls are hard enough to keep up with but even harder when you spend more time in the doctor's offices than doctors do. I will use your words as a reminder not to always believe the very convincing " everything's ok! " . In trying to strike the balance between giving your children space and creating an atmosphere where you believe they will let you know if there's a problem, you can't feel at fault when problems arise. I have a huge guilt problem for not being Superwoman and I must constantly remind myself of the general message behind your posting. I have to remember that a happy life is not one no problems. I have to remember that learning from an experience doesn't have to cause negative feelings overall. Janay Rasha, Malik and Jordyn's mom > > Hi all. I've missed all of you but want you to know I always think of > everyone and pray for you here. I haven't been on the list for many, many > reasons. This is probably going to be the only time in the next few weeks that I'll > be able to write. > > The first and hardest thing that changed our lives was that my oldest > daughter had a breakdown. This has been quite an emotional time and I felt > terrible with what she's been going through. Apparently being in her last year for > her masters in speech and language was tough. She had 6 grad courses, had to > do 100 hours of clinic and also had a placement. It was way too much. She > was burning that candle on too many ends. She's also an intense student who > achieves to the fullest usually getting A's for everything. That's a high > standard few can live up to. Add to that she's an incredibly sensitive person > who is also incredibly moralistic. And sadly add to that she's been an older > sibling to a sister who has CHARGE. Though Patty is tremendously wonderful > there still was that CHARGE stuff that was out of our hands. Even more sad > is Kris needed me at times where I didn't see the need. I missed her > struggles, because she hid them. She felt guilty that her problems didn't equal > Patty's so she kept quiet. But her struggles were and are HER struggles. They > were and are just as important as Patty's. Everything's relative. > > Thankfully she is now doing very well but still needs time to get things > back into perspective. She's on her path once again in focusing on her future. > This time her future does not have to be perfect and is in her own hands. > She asked me to share because she wants other parents to know what happened to > her so that you all might learn for your other children. Kris was and is > the happiest and most wonderful individual there is. Again, she hid her > emotional struggles. She did that well too. Her doctor, teachers, and family > members always told me she was fabulously stable. Who knew?! With that she > wants all of you to know that therapy works wonders now and then and it's not to > early to start even if you don't think it's needed. > > And now about Patty. So far her health has been good. She's had a bit of a > cold but that's all it was. She also hasn't had any ear infections since > her surgery. She usually gets about four a year. We also had a meeting with > the commissioner for the Deaf/Blind and her case worker. They agreed to send > Patty back to Easter Seals to continue forward in finding her a different > job, an appropriate job. We couldn't be more pleased as Easter Seals in Boston > has been more than exceptional for Patty. They have positively changed her > life and her outlook. I could not speak highly enough of them. With their > interaction Patty's dreams and desires came back. But... it still is always > push and shove to get things going. > > With that I have been reflecting a great deal lately. What happened to Kris > brought back so many unhappy memories. The illnesses of course were > horrible. But they were illnesses. You go to a doctor and they deal with it the > best they can or they send you to a new doctor, and then another or another.... > > In reality it is the total lack of understanding, services, and struggles we > have had to wage through just to get Patty her own life which are the most > unhappy memories. Those trying times had a dramatic negative impact not only > on Patty but all of us. These were things we should not have had to fight > for. I do not regret we did what was needed for Patty as she wouldn't be as > far as she is but the toll it took on all of us is what angers me. I regret my > children had to experience what they did. These battles were educational > and/or for services. > > It is also sadly true that if Patty were either more abled or more disabled > life would be easier. That's a hard statement but beyond true. If she were > more disabled she'd have a chance for some living opportunities separate from > us here at home. If she were more abled she'd be on her way and out of the > house. But none of that is true for Patty. She remains the " tweener " as we > call it. She's always in between categories for everything. > > I am finding basically two reasons for the struggles we went or are going > through. The first is funding. Funding is allocated in unique ways. And that > battle for funding is intense. The other is lack of information, narrow > mindedness and/or arrogance. > > Looking back I believe I made a huge mistake. For years I have been singing > the tune that Patty and our children fit the deaf/blind category. While I > absolutely still believe this I also can absolutely say that was directly > through those in the deaf/blind field that made our lives difficult when it > shouldn't have been that way. It was and is the deaf/blind services that also > have impacted my family. It wasn't only negative for Patty but also for Kris. > I shouldn't have had to spend so much time looking for answers when those who > had them could shared the information instead of me searching so hard. > > Because of that I was wrong. I should not guide all of you into a direction > where you all might experience the same. Yes there are many, many gifted > specialists in the deaf/blind field throughout the country. But be aware of > what people say verses what they do. For those of you who don't have the > deaf/blind label, although I feel it is the right one for most that's ok. Get the > services from those individuals and programs who will step outside their > boxes and help your children to reach for their fullest potential. They are out > there. Sad to say it took me 22 years to look further than deaf/blind. I > am saddened by the negative occurrences we lived with. It was the lack of > understanding by those in CT of what CHARGE, deaf/blind and how Patty meet > those that negatively impacted our entire lives. Then came the adult services. > It got harder. Patty continued to have negative experiences including trying > two times to get some benefit from an adult program but finding the opposite > of what should have benefited her. Although all of these might know > deaf/blind they sure didn't know CHARGE, especially the emotional/behavioral aspect. > Again that negatively impacted our entire lives. They are learning but not > in time for Patty. And now here she is. There remain hardships. It > doesn't have to be this way. It shouldn't be for your children either. We are > parents and people who have CHARGE. We aren't programs or providers. We are > more important and more truthful. It can and will be different for all of > you. > > It's a blessing my family remained as healthy as we did for so long. And > we are on our way to that again, this time differently but truer then ever > before. Life is moving forward to new directions. > > So now....... because I am totally let down by those in the field of > deaf/blindness I am looking for help elsewhere. While we remain in looking to those > in the deaf/blind field (they aren't all bad, really!) we are also joining > national associations for the blind, national associations for the deaf, and > so on. I now believe all these need to join together to be of the most > benefit for our children, all our children. Our children aren't just deaf/blind, > that is a subcategory. Our children have CHARGE! > > And now for two last things, first in my believing our battles with those in > the field of deaf/blindness were fruitless with most I emphatically and > loudly now and always sing the praises for those at Perkins in the deaf/blind > programs. They aren't perfect, but no where is. They are CHARGE experts. They > do have answers. There are people out there like Tim who are experts and > have answers. There are others who are experts as well. And incredibly they > usually say they don't know all the answers. Any time anyone anywhere tells > you they KNOW or are experts -run like the wind! > > The last thing is for a few lurkers out there and not you parents, or others > who don't lurk. Knowing this is a small world I would like to say that I > don't care WHAT Patty is, I don't care about anything except that she finds > happiness, fulfillment, love and joy in her life. That is all that I dream for > her. I do care though if people, in any profession or volunteer at any > program, try to guide Patty to what they believe and/or feel instead of letting > her find her own answers- herself! And once she finds her answers I will > always be happy and proud of her. I always have been and I will always be. It's > saddens me if anyone who believes or says different. They just don't know > me then. > > So now I've written my book again! Please in reading this know our lives > are good. They are really good. Although this reads as negative our lives are > much more than that. Sure there have been a few negative occurrences in our > lives but there's been much more to add to that. There's been good and many > great things. It is the struggles that make us stronger. There is a > beautiful future for all of us. It's just a different path we take. But a > beautiful one at that. > > I'll bounce back in here in a week or two. Until then know I'll be praying > for all of you. You all are my second family. I do miss you. > > Please hold all your children close. > > Life is good. > > > > > Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Bonnie, Your perspective on things is such a great resource to me. I'm sorry to read about your other daughter's struggles. We have two boys and our oldest is 22 months older than Cameron. I pray every day that we are doing the best for both of them as parents. While my son Cameron is only 4 1/2 years old and does not the the deaf/blind diagnosis, he does have a hearing loss which is severe/profound (although it is a conductive loss and aided well enough that he can understand most speech and he does speak in English word order). So for most people Cameron seems to have only the label of " deaf " . Your comments about Patty's label of " deaf/blind " and how her CHARGE is also in the mix and needs to be acknowledged and addressed really hit home with me. Cameron does really well communicating verbally and uses ASL (when he wants to or if he needs to) but he does have some quirks (behavior - which is not harmful or violent, but at times it is distracting) which I'm pretty sure are CHARGE related. But as he begins more formal education - he'll be in a contained deaf ed Kindergarten next year - I really want the educators to remember that his CHARGE may be the reason for some of his behavior and to work with them to figure out how to help him manage them. I feel sometimes his preschool teacher doesn't understand that some of his behavior is because of his lack of vestibular function or his need for some sort of low level sensory input. But as Cameron's parent I don't understand some of his behavior myself so often I'm at a loss to offer suggestions. Cameron tells me that a lot of the time he's silly and only sometimes serious. He is a pretty happy kid. And other times when he's talking to himself in the back of the car and I ask him what he's talking about he tells me he loves me or that he doesn't know what he's saying. Very odd. Or is it just the behavior of a 4 1/2 year old? Anyway, I don't want to take up too much space here on this as you have a lot on your plate, but I just wanted to thank you for checking in on the list and for sharing what you've discovered during your time in " CHARGEland " . You are one of the veterans on this list and I so value your input/insight and comments. Thanks again and hugs from Edmonds, WA Mom to Cameron, 4 1/2 (CHARGE) and , 6 1/2 and wife to Linden - a big man with a huge heart http://cameronwoweeandrew.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Hi Bonnie I am relieved Kris is back on track, and things have worked themselves out, this is naturally sad when we all have siblings to a charge child, I am already feeling the strain of my three other girls, in that they do miss out now more than they ever did before. The time and hours go nowhere and your story reminds me to find the time some how for the girls. It is so hard!!! hugs to you and the family, I dont get to post as often as I would like and miss you all too!! lots of love Les x > Hi all. I've missed all of you but want you to know I always think of > everyone and pray for you here. I haven't been on the list for many, many > reasons. This is probably going to be the only time in the next few weeks > that I'll > be able to write. > > The first and hardest thing that changed our lives was that my oldest > daughter had a breakdown. This has been quite an emotional time and I felt > terrible with what she's been going through. Apparently being in her last > year for > her masters in speech and language was tough. She had 6 grad courses, had > to > do 100 hours of clinic and also had a placement. It was way too much. She > was burning that candle on too many ends. She's also an intense student > who > achieves to the fullest usually getting A's for everything. That's a high > standard few can live up to. Add to that she's an incredibly sensitive > person > who is also incredibly moralistic. And sadly add to that she's been an > older > sibling to a sister who has CHARGE. Though Patty is tremendously wonderful > > there still was that CHARGE stuff that was out of our hands. Even more sad > is Kris needed me at times where I didn't see the need. I missed her > struggles, because she hid them. She felt guilty that her problems didn't > equal > Patty's so she kept quiet. But her struggles were and are HER struggles. > They > were and are just as important as Patty's. Everything's relative. > > Thankfully she is now doing very well but still needs time to get things > back into perspective. She's on her path once again in focusing on her > future. > This time her future does not have to be perfect and is in her own hands. > She asked me to share because she wants other parents to know what happened > to > her so that you all might learn for your other children. Kris was and is > the happiest and most wonderful individual there is. Again, she hid her > emotional struggles. She did that well too. Her doctor, teachers, and > family > members always told me she was fabulously stable. Who knew?! With that > she > wants all of you to know that therapy works wonders now and then and it's > not to > early to start even if you don't think it's needed. > > And now about Patty. So far her health has been good. She's had a bit of > a > cold but that's all it was. She also hasn't had any ear infections since > her surgery. She usually gets about four a year. We also had a meeting > with > the commissioner for the Deaf/Blind and her case worker. They agreed to > send > Patty back to Easter Seals to continue forward in finding her a different > job, an appropriate job. We couldn't be more pleased as Easter Seals in > Boston > has been more than exceptional for Patty. They have positively changed her > > life and her outlook. I could not speak highly enough of them. With their > interaction Patty's dreams and desires came back. But... it still is > always > push and shove to get things going. > > With that I have been reflecting a great deal lately. What happened to > Kris > brought back so many unhappy memories. The illnesses of course were > horrible. But they were illnesses. You go to a doctor and they deal with > it the > best they can or they send you to a new doctor, and then another or > another.... > > In reality it is the total lack of understanding, services, and struggles > we > have had to wage through just to get Patty her own life which are the most > unhappy memories. Those trying times had a dramatic negative impact not > only > on Patty but all of us. These were things we should not have had to fight > for. I do not regret we did what was needed for Patty as she wouldn't be > as > far as she is but the toll it took on all of us is what angers me. I > regret my > children had to experience what they did. These battles were educational > and/or for services. > > It is also sadly true that if Patty were either more abled or more disabled > life would be easier. That's a hard statement but beyond true. If she > were > more disabled she'd have a chance for some living opportunities separate > from > us here at home. If she were more abled she'd be on her way and out of the > house. But none of that is true for Patty. She remains the " tweener " as we > call it. She's always in between categories for everything. > > I am finding basically two reasons for the struggles we went or are going > through. The first is funding. Funding is allocated in unique ways. And > that > battle for funding is intense. The other is lack of information, narrow > mindedness and/or arrogance. > > Looking back I believe I made a huge mistake. For years I have been > singing > the tune that Patty and our children fit the deaf/blind category. While I > absolutely still believe this I also can absolutely say that was directly > through those in the deaf/blind field that made our lives difficult when it > shouldn't have been that way. It was and is the deaf/blind services that > also > have impacted my family. It wasn't only negative for Patty but also for > Kris. > I shouldn't have had to spend so much time looking for answers when those > who > had them could shared the information instead of me searching so hard. > > Because of that I was wrong. I should not guide all of you into a > direction > where you all might experience the same. Yes there are many, many gifted > specialists in the deaf/blind field throughout the country. But be aware > of > what people say verses what they do. For those of you who don't have the > deaf/blind label, although I feel it is the right one for most that's ok. > Get the > services from those individuals and programs who will step outside their > boxes and help your children to reach for their fullest potential. They > are out > there. Sad to say it took me 22 years to look further than deaf/blind. I > am saddened by the negative occurrences we lived with. It was the lack of > understanding by those in CT of what CHARGE, deaf/blind and how Patty meet > those that negatively impacted our entire lives. Then came the adult > services. > It got harder. Patty continued to have negative experiences including > trying > two times to get some benefit from an adult program but finding the > opposite > of what should have benefited her. Although all of these might know > deaf/blind they sure didn't know CHARGE, especially the > emotional/behavioral aspect. > Again that negatively impacted our entire lives. They are learning but > not > in time for Patty. And now here she is. There remain hardships. It > doesn't have to be this way. It shouldn't be for your children either. > We are > parents and people who have CHARGE. We aren't programs or providers. We > are > more important and more truthful. It can and will be different for all of > you. > > It's a blessing my family remained as healthy as we did for so long. And > we are on our way to that again, this time differently but truer then ever > before. Life is moving forward to new directions. > > So now....... because I am totally let down by those in the field of > deaf/blindness I am looking for help elsewhere. While we remain in looking > to those > in the deaf/blind field (they aren't all bad, really!) we are also joining > national associations for the blind, national associations for the deaf, > and > so on. I now believe all these need to join together to be of the most > benefit for our children, all our children. Our children aren't just > deaf/blind, > that is a subcategory. Our children have CHARGE! > > And now for two last things, first in my believing our battles with those > in > the field of deaf/blindness were fruitless with most I emphatically and > loudly now and always sing the praises for those at Perkins in the > deaf/blind > programs. They aren't perfect, but no where is. They are CHARGE experts. > They > do have answers. There are people out there like Tim who are experts and > have answers. There are others who are experts as well. And incredibly > they > usually say they don't know all the answers. Any time anyone anywhere > tells > you they KNOW or are experts -run like the wind! > > The last thing is for a few lurkers out there and not you parents, or > others > who don't lurk. Knowing this is a small world I would like to say that I > don't care WHAT Patty is, I don't care about anything except that she finds > happiness, fulfillment, love and joy in her life. That is all that I dream > for > her. I do care though if people, in any profession or volunteer at any > program, try to guide Patty to what they believe and/or feel instead of > letting > her find her own answers- herself! And once she finds her answers I will > always be happy and proud of her. I always have been and I will always be. > It's > saddens me if anyone who believes or says different. They just don't know > me then. > > So now I've written my book again! Please in reading this know our lives > are good. They are really good. Although this reads as negative our lives > are > much more than that. Sure there have been a few negative occurrences in > our > lives but there's been much more to add to that. There's been good and > many > great things. It is the struggles that make us stronger. There is a > beautiful future for all of us. It's just a different path we take. But a > beautiful one at that. > > I'll bounce back in here in a week or two. Until then know I'll be praying > for all of you. You all are my second family. I do miss you. > > Please hold all your children close. > > Life is good. > > > > > Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 i was wondering where u were th other day love u all and agree bout that label while we may be deaf blind we r charge love u all gettign jstoma out fev if u didnt no and as for thius sibling rivalry it happes with disabled friends and ill sharge this with u all i for soem reason get close to the ones who cant talk and to of those and got real close as i did but gerog shoved me out and got derpession and leaned on sev so now that means mum wotn let me go to sevs bday coz georg will b there wat im trying to say is that it ccould happen anywhere lol love u all > > Hi Bonnie > > I am relieved Kris is back on track, and things have worked themselves > out, this is naturally sad when we all have siblings to a charge > child, I am already feeling the strain of my three other girls, in > that they do miss out now more than they ever did before. The time and > hours go nowhere and your story reminds me to find the time some how > for the girls. > It is so hard!!! > hugs to you and the family, I dont get to post as often as I would > like and miss you all too!! > lots of love Les x > > On 11/01/07, Turk22082@... <Turk22082%40aol.com> <Turk22082@...<Turk22082%40aol.com>> > wrote: > > Hi all. I've missed all of you but want you to know I always think of > > everyone and pray for you here. I haven't been on the list for many, > many > > reasons. This is probably going to be the only time in the next few > weeks > > that I'll > > be able to write. > > > > The first and hardest thing that changed our lives was that my oldest > > daughter had a breakdown. This has been quite an emotional time and I > felt > > terrible with what she's been going through. Apparently being in her > last > > year for > > her masters in speech and language was tough. She had 6 grad courses, > had > > to > > do 100 hours of clinic and also had a placement. It was way too much. > She > > was burning that candle on too many ends. She's also an intense student > > who > > achieves to the fullest usually getting A's for everything. That's a > high > > standard few can live up to. Add to that she's an incredibly sensitive > > person > > who is also incredibly moralistic. And sadly add to that she's been an > > older > > sibling to a sister who has CHARGE. Though Patty is tremendously > wonderful > > > > there still was that CHARGE stuff that was out of our hands. Even more > sad > > is Kris needed me at times where I didn't see the need. I missed her > > struggles, because she hid them. She felt guilty that her problems > didn't > > equal > > Patty's so she kept quiet. But her struggles were and are HER struggles. > > They > > were and are just as important as Patty's. Everything's relative. > > > > Thankfully she is now doing very well but still needs time to get things > > back into perspective. She's on her path once again in focusing on her > > future. > > This time her future does not have to be perfect and is in her own > hands. > > She asked me to share because she wants other parents to know what > happened > > to > > her so that you all might learn for your other children. Kris was and is > > the happiest and most wonderful individual there is. Again, she hid her > > emotional struggles. She did that well too. Her doctor, teachers, and > > family > > members always told me she was fabulously stable. Who knew?! With that > > she > > wants all of you to know that therapy works wonders now and then and > it's > > not to > > early to start even if you don't think it's needed. > > > > And now about Patty. So far her health has been good. She's had a bit of > > a > > cold but that's all it was. She also hasn't had any ear infections since > > her surgery. She usually gets about four a year. We also had a meeting > > with > > the commissioner for the Deaf/Blind and her case worker. They agreed to > > send > > Patty back to Easter Seals to continue forward in finding her a > different > > job, an appropriate job. We couldn't be more pleased as Easter Seals in > > Boston > > has been more than exceptional for Patty. They have positively changed > her > > > > life and her outlook. I could not speak highly enough of them. With > their > > interaction Patty's dreams and desires came back. But... it still is > > always > > push and shove to get things going. > > > > With that I have been reflecting a great deal lately. What happened to > > Kris > > brought back so many unhappy memories. The illnesses of course were > > horrible. But they were illnesses. You go to a doctor and they deal with > > it the > > best they can or they send you to a new doctor, and then another or > > another.... > > > > In reality it is the total lack of understanding, services, and > struggles > > we > > have had to wage through just to get Patty her own life which are the > most > > unhappy memories. Those trying times had a dramatic negative impact not > > only > > on Patty but all of us. These were things we should not have had to > fight > > for. I do not regret we did what was needed for Patty as she wouldn't be > > as > > far as she is but the toll it took on all of us is what angers me. I > > regret my > > children had to experience what they did. These battles were educational > > and/or for services. > > > > It is also sadly true that if Patty were either more abled or more > disabled > > life would be easier. That's a hard statement but beyond true. If she > > were > > more disabled she'd have a chance for some living opportunities separate > > from > > us here at home. If she were more abled she'd be on her way and out of > the > > house. But none of that is true for Patty. She remains the " tweener " as > we > > call it. She's always in between categories for everything. > > > > I am finding basically two reasons for the struggles we went or are > going > > through. The first is funding. Funding is allocated in unique ways. And > > that > > battle for funding is intense. The other is lack of information, narrow > > mindedness and/or arrogance. > > > > Looking back I believe I made a huge mistake. For years I have been > > singing > > the tune that Patty and our children fit the deaf/blind category. While > I > > absolutely still believe this I also can absolutely say that was > directly > > through those in the deaf/blind field that made our lives difficult when > it > > shouldn't have been that way. It was and is the deaf/blind services that > > also > > have impacted my family. It wasn't only negative for Patty but also for > > Kris. > > I shouldn't have had to spend so much time looking for answers when > those > > who > > had them could shared the information instead of me searching so hard. > > > > Because of that I was wrong. I should not guide all of you into a > > direction > > where you all might experience the same. Yes there are many, many gifted > > specialists in the deaf/blind field throughout the country. But be aware > > of > > what people say verses what they do. For those of you who don't have the > > deaf/blind label, although I feel it is the right one for most that's > ok. > > Get the > > services from those individuals and programs who will step outside their > > boxes and help your children to reach for their fullest potential. They > > are out > > there. Sad to say it took me 22 years to look further than deaf/blind. I > > am saddened by the negative occurrences we lived with. It was the lack > of > > understanding by those in CT of what CHARGE, deaf/blind and how Patty > meet > > those that negatively impacted our entire lives. Then came the adult > > services. > > It got harder. Patty continued to have negative experiences including > > trying > > two times to get some benefit from an adult program but finding the > > opposite > > of what should have benefited her. Although all of these might know > > deaf/blind they sure didn't know CHARGE, especially the > > emotional/behavioral aspect. > > Again that negatively impacted our entire lives. They are learning but > > not > > in time for Patty. And now here she is. There remain hardships. It > > doesn't have to be this way. It shouldn't be for your children either. > > We are > > parents and people who have CHARGE. We aren't programs or providers. We > > are > > more important and more truthful. It can and will be different for all > of > > you. > > > > It's a blessing my family remained as healthy as we did for so long. And > > we are on our way to that again, this time differently but truer then > ever > > before. Life is moving forward to new directions. > > > > So now....... because I am totally let down by those in the field of > > deaf/blindness I am looking for help elsewhere. While we remain in > looking > > to those > > in the deaf/blind field (they aren't all bad, really!) we are also > joining > > national associations for the blind, national associations for the deaf, > > and > > so on. I now believe all these need to join together to be of the most > > benefit for our children, all our children. Our children aren't just > > deaf/blind, > > that is a subcategory. Our children have CHARGE! > > > > And now for two last things, first in my believing our battles with > those > > in > > the field of deaf/blindness were fruitless with most I emphatically and > > loudly now and always sing the praises for those at Perkins in the > > deaf/blind > > programs. They aren't perfect, but no where is. They are CHARGE experts. > > They > > do have answers. There are people out there like Tim who are experts and > > have answers. There are others who are experts as well. And incredibly > > they > > usually say they don't know all the answers. Any time anyone anywhere > > tells > > you they KNOW or are experts -run like the wind! > > > > The last thing is for a few lurkers out there and not you parents, or > > others > > who don't lurk. Knowing this is a small world I would like to say that I > > don't care WHAT Patty is, I don't care about anything except that she > finds > > happiness, fulfillment, love and joy in her life. That is all that I > dream > > for > > her. I do care though if people, in any profession or volunteer at any > > program, try to guide Patty to what they believe and/or feel instead of > > letting > > her find her own answers- herself! And once she finds her answers I will > > always be happy and proud of her. I always have been and I will always > be. > > It's > > saddens me if anyone who believes or says different. They just don't > know > > me then. > > > > So now I've written my book again! Please in reading this know our lives > > are good. They are really good. Although this reads as negative our > lives > > are > > much more than that. Sure there have been a few negative occurrences in > > our > > lives but there's been much more to add to that. There's been good and > > many > > great things. It is the struggles that make us stronger. There is a > > beautiful future for all of us. It's just a different path we take. But > a > > beautiful one at that. > > > > I'll bounce back in here in a week or two. Until then know I'll be > praying > > for all of you. You all are my second family. I do miss you. > > > > Please hold all your children close. > > > > Life is good. > > > > > > > > > > Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Dearest Bonnie- You have said so much, generously shared so much with complete openness and transparency and given so much love and mercy to us in this post and always. My heart is full of so many emotions reading your email and the responses that come to it. Thank you so much for bringing the invitation of awareness to our siblings of children with CHARGE. I, like all of us, fret over, safeguard and celebrate all my children - and the worries are as unique as each child. Children exhibit such an amazing willingness to extend, create and receive love. They have such an unreasonable capacity and willingness to accept responsibility, disappointment and burden. They have such idealism and willingness to contribute to that end. My worry is about the decisions they make about themselves and the world around them as things don't necessarily move to the ends they seek. It has been a tender journey with my family - as we care for and are careful for each other. Noticing and noticing each other notice. Honoring our individual wholeness - trusting that the spirit within will always guide us to the greatest good for all and practicing being aware of that voice - honoring that voice. Thank you for baring your journey to us so that I can be reminded again of what is important. with love and wholeness to all- yuka A quick hello Hi all. I've missed all of you but want you to know I always think of everyone and pray for you here. I haven't been on the list for many, many reasons. This is probably going to be the only time in the next few weeks that I'll be able to write. The first and hardest thing that changed our lives was that my oldest daughter had a breakdown. This has been quite an emotional time and I felt terrible with what she's been going through. I now believe all these need to join together to be of the most >snip< benefit for our children, all our children. Our children aren't just deaf/blind, that is a subcategory. Our children have CHARGE! >snip< I would like to say that I don't care WHAT Patty is, I don't care about anything except that she finds happiness, fulfillment, love and joy in her life. That is all that I dream for her. I do care though if people, in any profession or volunteer at any program, try to guide Patty to what they believe and/or feel instead of letting her find her own answers- herself! And once she finds her answers I will always be happy and proud of her. I always have been and I will always be. It's saddens me if anyone who believes or says different. They just don't know me then. So now I've written my book again! Please in reading this know our lives are good. They are really good. Although this reads as negative our lives are much more than that. Sure there have been a few negative occurrences in our lives but there's been much more to add to that. There's been good and many great things. It is the struggles that make us stronger. There is a beautiful future for all of us. It's just a different path we take. But a beautiful one at that. I'll bounce back in here in a week or two. Until then know I'll be praying for all of you. You all are my second family. I do miss you. Please hold all your children close. Life is good. Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Bonnie- There was nothing " quick " about that hello!! Gosh, I've missed you! I'm so sorry for all that Kris and the rest of you have been through! I can't imagine how trying it's been. I'm glad you took time to share with us. You know, of course, that our prayers will be with you (as they always are). Many of us know the value of counseling. Many of us know how easily our loved ones can hide their troubles from us. Even the most loving parents and spouses can't always see what someone is trying very hard to hide. Hugs all around to your family. May this crisis bring you closer and make your stronger. Love Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 and Bonnie- Those order form for the warehouse-I will be looking forward to those!!! We will all learn so much. We should all do the same for our kids - at any age. You're absolutely right, , that we often don't even realize all that we do for our kids. When I work with parents, I tell them to imagine they had to drop their kid off suddenly at a strangers' house. Now this is a safe stranger who is fully equipped for the job - but what would that person need to know and do to support your child?? Then you begin to see all the things we do as parents and professionals that aren't recorded but are necessary none-the-less. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 - I don't know if this is the same as Cameron or not. Aubrie carries on full conversations with imaginary friends. She'll walk through the store as if there's a ghost walking beside her - fully animated conversation. It's a hoot! It was getting a bit excessive though. It got to be where I never knew if she was in her world or mine - and it seemed like she was spending more time there than here! I thought it was beyond her control and I worried and fretted. Finally, I had a talk with her. She very promptly began saving those for her play time and doing less of it with me, in the store, etc. I mean, it is funny and cute - but sort of embarrassing too. She's not embarrassed by it, but it will cause social problems if she doesn't learn to curb it when she's with friends. I wonder if Cameron is talking to imaginary friends or simply thinking out loud as he imagines or contemplates. Michele W Aubrie's mom 9 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Michele, What you've written also has a lot to do with adult services for our kids/adult kids. I don't think it's ever too early to consider what you want aides to know/be able to do. Then, as Andy and I are now learning, you have to realize that you'll have to - or see that it's done by someone else -do the training with every new staff member. What we do with our young children will recur in their future. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2007 Report Share Posted January 12, 2007 Martha- Yes - thanks for bringing in the future considerations. If we do these things now, we will be better prepared to follow through when our kids are older. There's so much advocacy to be done to get adult services! If we can practice and develop those skills while our kids are little, we'll be better equipped later. I've seen many families who don't even begin thinking about these things til their child is 21 or 22 and falls off that cliff when they exit the school system - then the parents have to very quickly figure out what they want/need and how to get it. Michele W Quote Link to comment Share on other sites More sharing options...
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