Guest guest Posted July 4, 2005 Report Share Posted July 4, 2005 Bonnie, I love reading your posts. I really listen to what you have to say. I met you and Patty 2 years ago at the last CHARGE conference and I can't tell you the impression you both had on me. I guess I see so much of what you describe in my son who is still, very young, but maturing rapidly. He tells me he will have to get rid of his g-tube when he gets married and has a job. I mean, he has goals for himself. I have to help him reach those goals. He also walks a fine line, and I just can't explain it to people. He is so darn close to being that " typical " kid, then he has his " things " (the anxiety and OCD behaviors and of course eating difficulties). People think I am crazy that I am already looking into opportunities for him in high school when he is only going to be in the third grade! People think I am nuts that this will be his 3rd year at a 2 week sleep away camp. But it is all building that independence that I know he wants to have. Each year he comes home doing that much more for himself. Thanks again for your insight. I hope we will see you at the conference. What is the connection between vision and executive functioning? Debbie Matasker mom to 8 w/CHARGE, 10, andra 6 [Norton AntiSpam] long again! With all this talk about behavior, vision and executive functioning I went back and read one or two of my posts. I realize it's so hard for me to really share Patty. Patty's " behaviors " are definitely CHARGE but because she is " mild " people just don't see them as behaviors that are interfering to her. But they are! People don't even see them as behaviors. They can see them as lack of ability, or things Patty can control but chooses not to. There is always that fine line with Patty. I wish they could just be easily identifiable to others. Most of all when she is having difficulty with anxiety and such, her executive functioning goes out of whack along with everything else and she appears more disabled then she really is. Having said that I have to add something else in all this. While it is wonderful that Kim is going to build her dream for Dylan and CHARGErs that just doesn't jive with Patty's dream. In fact that would be oppressive to her. Her dream is to live independently, away from us, in an apartment with a supported living option. Her dream is to also have a career, appropriate social and community opportunities, and continue some sort of secondary education being college or technical training on computers. She has the possibilities, potential, and the right to build on her dreams. She is going to have to work twice as long and twice as hard but she should be allowed to do just that. But she can't achieve her dream without the understanding of who and all she is. It is terrifying for me to let go but it's more terrifying for me to hold on to her. That too would be oppression. I have found often there is " oppression " solely due to the lack of understanding of CHARGE in relation to each individual. Just as Kim works so hard to achieve Dylan's dream I do the same for Patty. We all do the same for our children. We just have different dreams. And I think that's great! We can't have unrealistic expectations for Patty because that would place unreasonable demands on her. But we also can't deny her " abilities " and must continue to make sure we do not deny our obligations to her. Nothing about this is easy, but specialists have been learning and paving the way for our children. There already ARE a few answers out there. These answers help remove oppression as much as possible. Patty and Dylan are different individuals. That's another thing we fight for, individuality. I still haven't done it. I still haven't really shared " Patty. " But I am living and fighting for her and her dream. And through this I dream of what is going to happen in the future for all of you who have younger children. I hope you all have realistic dreams. But keep that dream one step ahead of what is occurring to/for your child at that moment. And goodness gracious, find the specialists in CHARGE to help you all realistically dream. Bonnie, Mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2005 Report Share Posted July 5, 2005 bonnie every time i read your post you sharing patty with us shes truly amazing you know today we went to have another look at transition to wrok place its all soooo hard i said to mum today well we could not apply for funding she said no wed have nothing then and thats absollutely true like patty i can do stuff and like patty i am able to comunicate like an ordianry person but in this world they dont loo,k at our what we can do or what we cant its our intelectual status most of the services only provide for intelcutaly disabled which isnt what i need i need mobility and things like that i feeel sure you and patty are in the same plane here and shes been out of school longer im only leaving this year i admit this morning i was thinking of you life is so hard when you have this stuff to think about isnt it hugs elllen xxxxxxx > > Bonnie, > > I love reading your posts. I really listen to what you have to say. I met > you and Patty 2 years ago at the last CHARGE conference and I can't tell > you > the impression you both had on me. I guess I see so much of what you > describe in my son who is still, very young, but maturing rapidly. He > tells > me he will have to get rid of his g-tube when he gets married and has a > job. > I mean, he has goals for himself. I have to help him reach those goals. > > He also walks a fine line, and I just can't explain it to people. He is so > darn close to being that " typical " kid, then he has his " things " (the > anxiety and OCD behaviors and of course eating difficulties). > > People think I am crazy that I am already looking into opportunities for > him > in high school when he is only going to be in the third grade! People > think > I am nuts that this will be his 3rd year at a 2 week sleep away camp. But > it is all building that independence that I know he wants to have. Each > year he comes home doing that much more for himself. > > Thanks again for your insight. I hope we will see you at the conference. > > What is the connection between vision and executive functioning? > > Debbie Matasker mom to 8 w/CHARGE, 10, andra 6 > > > [Norton AntiSpam] long again! > > > With all this talk about behavior, vision and executive functioning I went > back and read one or two of my posts. I realize it's so hard for me to > really > share Patty. Patty's " behaviors " are definitely CHARGE but because she is > " mild " people just don't see them as behaviors that are interfering to > her. > But > they are! People don't even see them as behaviors. They can see them as > lack > of ability, or things Patty can control but chooses not to. There is > always > that fine line with Patty. I wish they could just be easily identifiable > to > others. Most of all when she is having difficulty with anxiety and such, > her > executive functioning goes out of whack along with everything else and she > appears more disabled then she really is. > > Having said that I have to add something else in all this. While it is > wonderful that Kim is going to build her dream for Dylan and CHARGErs that > just > doesn't jive with Patty's dream. In fact that would be oppressive to her. > Her > dream is to live independently, away from us, in an apartment with a > supported > living option. Her dream is to also have a career, appropriate social and > community opportunities, and continue some sort of secondary education > being > college or technical training on computers. She has the possibilities, > potential, > and the right to build on her dreams. She is going to have to work twice > as > long and twice as hard but she should be allowed to do just that. But she > can't > achieve her dream without the understanding of who and all she is. It is > terrifying for me to let go but it's more terrifying for me to hold on to > her. > That too would be oppression. I have found often there is " oppression " > solely > due to the lack of understanding of CHARGE in relation to each individual. > > Just as Kim works so hard to achieve Dylan's dream I do the same for > Patty. > We all do the same for our children. We just have different dreams. And I > think that's great! We can't have unrealistic expectations for Patty > because > that would place unreasonable demands on her. But we also can't deny her > " abilities " and must continue to make sure we do not deny our obligations > to > her. > > Nothing about this is easy, but specialists have been learning and paving > the > way for our children. There already ARE a few answers out there. These > answers help remove oppression as much as possible. Patty and Dylan are > different > individuals. That's another thing we fight for, individuality. > > I still haven't done it. I still haven't really shared " Patty. " But I am > living and fighting for her and her dream. And through this I dream of > what > is > going to happen in the future for all of you who have younger children. I > hope you all have realistic dreams. But keep that dream one step ahead of > what > is occurring to/for your child at that moment. And goodness gracious, find > the > specialists in CHARGE to help you all realistically dream. > > > Bonnie, Mom to a 22, Patty CHARGE 20, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2005 Report Share Posted July 5, 2005 Debbie, I always get afraid to answer questions like yours because I am not a specialist, I am only a mother. I also get afraid to answer because I don't think we can look at executive functioning alone for our children. They have CHARGE which is an incredibly complicated syndrome especially due to the impact of their health and sensory losses. The minute we look at one aspect, including executive function, this limits our understanding of the person with CHARGE. We really get into trouble then. This is exactly what I have tried to say to our school system and is what they couldn't fathom. It's not just the visual loss, it's also the lack of smell, balance, hearing, health, understanding of information, and things happening to our children. They have life thrown AT them in a way others don't. There's a disconnect. Again, the second we do not put it all together places limitations on our children. Please be very careful understanding a child with Autism, PDD, ADHD, OCD ... is totally different from that of a child who has CHARGE. It isn't just visual disabilities, (which I have found for Patty has never bee n understood) it isn't just hearing losses, it isn't just balance issues, it isn't just the missing of ... all of is combined and that is connected with the building blocks of life and learning. That is connected with executive functioning and behavior. That is connected with intelligence, and communication. Our children have CHARGE! I looked a little for you and have found a couple of definitions which I'll paste below. I also found a kind of boring article but I think page 4 and 5 might help you understand a little. When reading it though try to remember it is only one article and it isn't about CHARGE AND executive function!!!!!!! Executive Function: The executive system is a theorized cognitive system in psychology that controls and manages other cognitive processes. It is thought to be involved in processes such as planning, cognitive flexibility, abstract thinking, rule acquisition, and inhibiting inappropriate actions and irrelevant sensory information. executive- function disorder A disorder disrupting higher level cognitive abilities such as self-regulation, prioritization of work, awareness of time, abstract reasoning, logical analysis, hypothesis testing, and cognitive flexibility. http://www.txasp.org/Executive%20Functions%20Overview.pdf Read page 4 and 5 of this article. Please remember that the only way we can continue to keep learning about all this and our children are by the specialists out there such as Tim and Pam who are working with our children and studying and using their expertise to continue learning and then are teaching us. Don't know if this helps. I probably wrote too much yet again. See you at the conference! Bonnie, Mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Bonnie, Thanks for this info, it was very enlightening. I remember attending one of the symposiums on Executive Function but it was not sinking in, I didn't really understand it. This makes sense to me now, I have a more completed picture. Debbie [Norton AntiSpam] Re: long again! Debbie, I always get afraid to answer questions like yours because I am not a specialist, I am only a mother. I also get afraid to answer because I don't think we can look at executive functioning alone for our children. They have CHARGE which is an incredibly complicated syndrome especially due to the impact of their health and sensory losses. The minute we look at one aspect, including executive function, this limits our understanding of the person with CHARGE. We really get into trouble then. This is exactly what I have tried to say to our school system and is what they couldn't fathom. It's not just the visual loss, it's also the lack of smell, balance, hearing, health, understanding of information, and things happening to our children. They have life thrown AT them in a way others don't. There's a disconnect. Again, the second we do not put it all together places limitations on our children. Please be very careful understanding a child with Autism, PDD, ADHD, OCD ... is totally different from that of a child who has CHARGE. It isn't just visual disabilities, (which I have found for Patty has never bee n understood) it isn't just hearing losses, it isn't just balance issues, it isn't just the missing of ... all of is combined and that is connected with the building blocks of life and learning. That is connected with executive functioning and behavior. That is connected with intelligence, and communication. Our children have CHARGE! I looked a little for you and have found a couple of definitions which I'll paste below. I also found a kind of boring article but I think page 4 and 5 might help you understand a little. When reading it though try to remember it is only one article and it isn't about CHARGE AND executive function!!!!!!! Executive Function: The executive system is a theorized cognitive system in psychology that controls and manages other cognitive processes. It is thought to be involved in processes such as planning, cognitive flexibility, abstract thinking, rule acquisition, and inhibiting inappropriate actions and irrelevant sensory information. executive- function disorder A disorder disrupting higher level cognitive abilities such as self-regulation, prioritization of work, awareness of time, abstract reasoning, logical analysis, hypothesis testing, and cognitive flexibility. http://www.txasp.org/Executive%20Functions%20Overview.pdf Read page 4 and 5 of this article. Please remember that the only way we can continue to keep learning about all this and our children are by the specialists out there such as Tim and Pam who are working with our children and studying and using their expertise to continue learning and then are teaching us. Don't know if this helps. I probably wrote too much yet again. See you at the conference! Bonnie, Mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 bonnie you never write to much just enough for us to understand > > Bonnie, > > Thanks for this info, it was very enlightening. I remember attending one > of > the symposiums on Executive Function but it was not sinking in, I didn't > really understand it. This makes sense to me now, I have a more completed > picture. > > Debbie > > [Norton AntiSpam] Re: long again! > > > Debbie, > > I always get afraid to answer questions like yours because I am not a > specialist, I am only a mother. I also get afraid to answer because I > don't > think we > can look at executive functioning alone for our children. They have CHARGE > which is an incredibly complicated syndrome especially due to the impact > of > their health and sensory losses. The minute we look at one aspect, > including > executive function, this limits our understanding of the person with > CHARGE. > We > really get into trouble then. This is exactly what I have tried to say to > our > school system and is what they couldn't fathom. It's not just the visual > loss, it's also the lack of smell, balance, hearing, health, understanding > of > information, and things happening to our children. They have life thrown > AT > them > in a way others don't. There's a disconnect. Again, the second we do not > put it all together places limitations on our children. > > Please be very careful understanding a child with Autism, PDD, ADHD, OCD > ... > is totally different from that of a child who has CHARGE. > > It isn't just visual disabilities, (which I have found for Patty has never > bee > n understood) it isn't just hearing losses, it isn't just balance issues, > it > isn't just the missing of ... all of is combined and that is connected > with > the building blocks of life and learning. That is connected with executive > functioning and behavior. That is connected with intelligence, and > communication. > > > Our children have CHARGE! > > I looked a little for you and have found a couple of definitions which > I'll > paste below. I also found a kind of boring article but I think page 4 and > 5 > might help you understand a little. When reading it though try to remember > it is > only one article and it isn't about CHARGE AND executive function!!!!!!! > > > Executive Function: > The executive system is a theorized cognitive system in psychology that > controls and manages other cognitive processes. It is thought to be > involved > in > processes such as planning, cognitive flexibility, abstract thinking, rule > acquisition, and inhibiting inappropriate actions and irrelevant sensory > information. > > executive- function disorder > A disorder disrupting higher level cognitive abilities such as > self-regulation, prioritization of work, awareness of time, abstract > reasoning, logical > analysis, hypothesis testing, and cognitive flexibility. > > > http://www.txasp.org/Executive%20Functions%20Overview.pdf Read page 4 and > 5 > of this article. > > Please remember that the only way we can continue to keep learning about > all > this and our children are by the specialists out there such as Tim and Pam > who > are working with our children and studying and using their expertise to > continue learning and then are teaching us. > > Don't know if this helps. I probably wrote too much yet again. > > See you at the conference! > > > Bonnie, Mom to a 22, Patty CHARGE 20, and wife to > > > Quote Link to comment Share on other sites More sharing options...
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