Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 Here is the text of the essay ) Unreasonable..... by Alan Czarnek http://www.saywhatclub.com/essays/ebull.htm ---------------------------------------------------------------------------- ---- The unreasonable man is the one who expects the world to adapt to his needs, the reasonable man is the one who adapts himself to suit the world. Therefore, all progress depends upon the unreasonable man. Bernard Shaw ---------------------------------------------------------------------------- ---- If you ever hope to change something, don't 'accept' it. Acceptance of anything is a double edged sword, because to accept something implies that we have decided not to try to change the situation. Sometimes that is a good thing because there are some conditions that we can't change..... But we should be very careful about the things we 'accept' as unchangeable. I am noticing more and more that there are people in our society who use the argument, 'you must accept the inevitable' to justify the status quo REGARDLESS of whether the situation is really unchangeable or not...... Their message is: 'You are powerless to do anything about injustice so the only healthy response is to accept it......' To which I say: BULL. We must make the distinction between the things that really are unchangeable and those things that are not. There are many physical conditions that are unchangeable (at least in our lifetimes), but social conditions and social customs should almost always be considered 'changeable.' It is one thing to say, 'I have a physical hearing loss, and I must accept that,' and quite another thing to say 'I have a hearing loss and society treats me like a second class citizen and I must accept that.' Yes, there are plenty of people (mental health professionals) who will tell us that the second statement is not only correct, but also represents healthy adjustment ................ Once again, I say, BULL. Of course it is much easier to accept the status quo .... if we try to change an unjust situation we will surely encounter fierce resistance from those who benefit from the injustice ....... Think about that, just as there are those who suffer from injustice, there are also those who benefit from injustice. How can we identify the people who benefit from injustice? They are usually the ones who try to convince us that 'life is unfair and there is nothing that you can do about it.' What that statement really means is that life is unfair in their favor; they are benefiting from injustice. They are trying to talk you out of doing anything that would decrease their " unfair advantage. " In the long run, being 'unreasonable' when we face injustice is a much healthier response than 'accepting' it, and who knows, we might just end up making the world a little better place than it was before......... Re: Inclusion...long > recently i've been encountering a lot of people with the " that person is > disabled and they and their family need to accept it and move on " sort of > attitude... then today i recieved a link to this essay that i found very... > poingnant i guess is the word i'm looking for... the general idea is > accepting phsyical limitations is one thing, but accepting discrimination > against those with physical limitations is a totally different animal > altoghether... thoguht i'd share the link with you guys... http://www. > saywhatclub.com/essays/ebull.htm let me know what ya'll think Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 Here is the text of the essay ) Unreasonable..... by Alan Czarnek http://www.saywhatclub.com/essays/ebull.htm ---------------------------------------------------------------------------- ---- The unreasonable man is the one who expects the world to adapt to his needs, the reasonable man is the one who adapts himself to suit the world. Therefore, all progress depends upon the unreasonable man. Bernard Shaw ---------------------------------------------------------------------------- ---- If you ever hope to change something, don't 'accept' it. Acceptance of anything is a double edged sword, because to accept something implies that we have decided not to try to change the situation. Sometimes that is a good thing because there are some conditions that we can't change..... But we should be very careful about the things we 'accept' as unchangeable. I am noticing more and more that there are people in our society who use the argument, 'you must accept the inevitable' to justify the status quo REGARDLESS of whether the situation is really unchangeable or not...... Their message is: 'You are powerless to do anything about injustice so the only healthy response is to accept it......' To which I say: BULL. We must make the distinction between the things that really are unchangeable and those things that are not. There are many physical conditions that are unchangeable (at least in our lifetimes), but social conditions and social customs should almost always be considered 'changeable.' It is one thing to say, 'I have a physical hearing loss, and I must accept that,' and quite another thing to say 'I have a hearing loss and society treats me like a second class citizen and I must accept that.' Yes, there are plenty of people (mental health professionals) who will tell us that the second statement is not only correct, but also represents healthy adjustment ................ Once again, I say, BULL. Of course it is much easier to accept the status quo .... if we try to change an unjust situation we will surely encounter fierce resistance from those who benefit from the injustice ....... Think about that, just as there are those who suffer from injustice, there are also those who benefit from injustice. How can we identify the people who benefit from injustice? They are usually the ones who try to convince us that 'life is unfair and there is nothing that you can do about it.' What that statement really means is that life is unfair in their favor; they are benefiting from injustice. They are trying to talk you out of doing anything that would decrease their " unfair advantage. " In the long run, being 'unreasonable' when we face injustice is a much healthier response than 'accepting' it, and who knows, we might just end up making the world a little better place than it was before......... Re: Inclusion...long > recently i've been encountering a lot of people with the " that person is > disabled and they and their family need to accept it and move on " sort of > attitude... then today i recieved a link to this essay that i found very... > poingnant i guess is the word i'm looking for... the general idea is > accepting phsyical limitations is one thing, but accepting discrimination > against those with physical limitations is a totally different animal > altoghether... thoguht i'd share the link with you guys... http://www. > saywhatclub.com/essays/ebull.htm let me know what ya'll think Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 Bonnie, You know me and I am a die hard supporter of inclusion and have Always said it must be meaningful for all parties involved...You cannot just stick a kid in the corner of the classroom and call it inclusion. With that said...many teachers have asked me if when describing should they refer to him as the student with the hearing aides....that speaks volumes about what people think is important...I asked if that is how the other children will be described? The overweight girl...The boy with glasses? The little girl who has a lisp? It takes being blunt to get a point across. With I hope they refer to him as the funny kid or the kind kid....I believe at this stage is included... We had an incident here 2 towns over...A member of the town appropriations committee asked the superintendent why they had to funnel so much money to the least productive members of society? He lives to regret that statement and the people have asked for his resignation... But remarkably many people agreed with him..He was supported by many people in finding out why that money goes to children with disabilities...What does that say about society? I am involved at school...not as the mom of a special ed student but as a member of the PTA, school needs committee, fund raising committee and 2nd grade room mom. I run the holiday craft fair( made hundreds of quality affordable crafts for all our kids) and just put together a " Family Favorite Recipe Cookbook " ($ 10.00 if anyone is interested....228 recipes...)I just ran the Jump for Heart fundraiser....We as a small school ( 292 students) raised $ 6,000...I have coordinated many raffles etc...We are not know as that special needs family...but as a member of Chatfield Elementary school... I think it society that needs to change...not viewing our children as a waste of money. How can anyone be that arrogant that they know what any child is capable of doing...We know a student in the top of his high school class who just messed up his life by making a threat to another person on MY space...Those parents are devastated he lost his scholarship. Colleges have rescinded their offers.. The town invested a lot of money in his education and is he productive member of society? Who saw that coming...The fact is we do not know what our child can and cannot do..When was in the NICU we were quoted a statistic...1 in 4 people will know a person with a disability...either born with or acquired . WOW... I take opportunities for people to know to see beyond the disability... has touched many lives disability or not....Yesterday We were in Walmart and a Nun was there dressed in blue with the head piece ( we are not Catholic so I apologize for not knowing the correct terms) She approached us to ask me a question about sewing. That opened the door for to strike up a conversation...The sister told he has the light in his eye. God blessed him. He will do great things. The other 2 sisters joined the conversation we began to draw a crowd. I guess that we need to remain committed to get the word out. How do we change the perception of so many people? Will inclusion always work for ?? Who knows..In middle school it may change... Our middle school administrator leave a lot to be desired...All too often people are promoted to a point beyond where they can function ...Here is a case of 2. Unless they move on will go to a new school. We can only hope that each decision we make is right at the time.Well thought out and well informed..if we dwell in the " what ifs " we cannot move forward. Ellen mom to 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 recently i've been encountering a lot of people with the " that person is disabled and they and their family need to accept it and move on " sort of attitude... then today i recieved a link to this essay that i found very... poingnant i guess is the word i'm looking for... the general idea is accepting phsyical limitations is one thing, but accepting discrimination against those with physical limitations is a totally different animal altoghether... thoguht i'd share the link with you guys... http://www. saywhatclub.com/essays/ebull.htm let me know what ya'll think > > Bonnie, > You know me and I am a die hard supporter of inclusion and have Always > said it must be meaningful for all parties involved...You cannot just stick > a kid in the corner of the classroom and call it inclusion. > With that said...many teachers have asked me if when describing > should they refer to him as the student with the hearing aides....that > speaks volumes about what people think is important...I asked if that is how > the other children will be described? The overweight girl...The boy with > glasses? The little girl who has a lisp? It takes being blunt to get a > point across. With I hope they refer to him as the funny kid or the > kind kid....I believe at this stage is included... > We had an incident here 2 towns over...A member of the town > appropriations committee asked the superintendent why they had to funnel so > much money to the least productive members of society? He lives to regret > that statement and the people have asked for his resignation... But > remarkably many people agreed with him..He was supported by many people in > finding out why that money goes to children with disabilities...What does > that say about society? > I am involved at school...not as the mom of a special ed student but as > a member of the PTA, school needs committee, fund raising committee and 2nd > grade room mom. I run the holiday craft fair( made hundreds of quality > affordable crafts for all our kids) and just put together a " Family > Favorite Recipe Cookbook " ($ 10.00 if anyone is interested....228 > recipes...)I just ran the Jump for Heart fundraiser....We as a small school > ( 292 students) raised $ 6,000...I have coordinated many raffles etc...We > are not know as that special needs family...but as a member of Chatfield > Elementary school... > I think it society that needs to change...not viewing our children as a > waste of money. > How can anyone be that arrogant that they know what any child is capable > of doing...We know a student in the top of his high school class who just > messed up his life by making a threat to another person on MY space...Those > parents are devastated he lost his scholarship. Colleges have rescinded > their offers.. The town invested a lot of money in his education and is he > productive member of society? Who saw that coming...The fact is we do not > know what our child can and cannot do..When was in the NICU we were > quoted a statistic...1 in 4 people will know a person with a > disability...either born with or acquired . WOW... > I take opportunities for people to know to see beyond the > disability... has touched many lives disability or not....Yesterday We > were in Walmart and a Nun was there dressed in blue with the head piece ( we > are not Catholic so I apologize for not knowing the correct terms) She > approached us to ask me a question about sewing. > That opened the door for to strike up a conversation...The sister > told he has the light in his eye. God blessed him. He will do great > things. The other 2 sisters joined the conversation we began to draw a > crowd. > I guess that we need to remain committed to get the word out. How do we > change the perception of so many people? > Will inclusion always work for ?? Who knows..In middle school it > may change... > Our middle school administrator leave a lot to be desired...All too > often people are promoted to a point beyond where they can function ...Here > is a case of 2. Unless they move on will go to a new school. > We can only hope that each decision we make is right at the time.Wellthought out and well informed..if we dwell in the " what ifs " we cannot move > forward. > Ellen mom to 8 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 thank you Yuka! i wasn't sure if i could post the whole thing Cole > > Here is the text of the essay ) > > Unreasonable..... > by Alan Czarnek > > http://www.saywhatclub.com/essays/ebull.htm > > ---------------------------------------------------------------------------- > ---- > The unreasonable man is the one who expects the world to adapt to his > needs, > the reasonable man is the one who adapts himself to suit the world. > Therefore, all progress depends upon the unreasonable man. > Bernard Shaw > > ---------------------------------------------------------------------------- > ---- > If you ever hope to change something, don't 'accept' it. > > Acceptance of anything is a double edged sword, because to accept > something > implies that we have decided not to try to change the situation. Sometimes > that is a good thing because there are some conditions that we can't > change..... But we should be very careful about the things we 'accept' as > unchangeable. > > I am noticing more and more that there are people in our society who use > the > argument, 'you must accept the inevitable' to justify the status quo > REGARDLESS of whether the situation is really unchangeable or not...... > Their message is: 'You are powerless to do anything about injustice so the > only healthy response is to accept it......' To which I say: BULL. > > We must make the distinction between the things that really are > unchangeable > and those things that are not. There are many physical conditions that are > unchangeable (at least in our lifetimes), but social conditions and social > customs should almost always be considered 'changeable.' > > It is one thing to say, 'I have a physical hearing loss, and I must accept > that,' and quite another thing to say 'I have a hearing loss and society > treats me like a second class citizen and I must accept that.' Yes, there > are plenty of people (mental health professionals) who will tell us that > the > second statement is not only correct, but also represents healthy > adjustment > ............... Once again, I say, BULL. > > Of course it is much easier to accept the status quo .... if we try to > change an unjust situation we will surely encounter fierce resistance from > those who benefit from the injustice ....... Think about that, just as > there > are those who suffer from injustice, there are also those who benefit from > injustice. How can we identify the people who benefit from injustice? They > are usually the ones who try to convince us that 'life is unfair and there > is nothing that you can do about it.' What that statement really means is > that life is unfair in their favor; they are benefiting from injustice. > They > are trying to talk you out of doing anything that would decrease their > " unfair advantage. " > > In the long run, being 'unreasonable' when we face injustice is a much > healthier response than 'accepting' it, and who knows, we might just end > up > making the world a little better place than it was before......... > > > Re: Inclusion...long > > > > recently i've been encountering a lot of people with the " that person is > > disabled and they and their family need to accept it and move on " sort > of > > attitude... then today i recieved a link to this essay that i found > very... > > poingnant i guess is the word i'm looking for... the general idea is > > accepting phsyical limitations is one thing, but accepting > discrimination > > against those with physical limitations is a totally different animal > > altoghether... thoguht i'd share the link with you guys... http://www. > > saywhatclub.com/essays/ebull.htm let me know what ya'll think > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 April 22, 2006 Report Share Posted April 22, 2006 thank you Yuka! i wasn't sure if i could post the whole thing Cole > > Here is the text of the essay ) > > Unreasonable..... > by Alan Czarnek > > http://www.saywhatclub.com/essays/ebull.htm > > ---------------------------------------------------------------------------- > ---- > The unreasonable man is the one who expects the world to adapt to his > needs, > the reasonable man is the one who adapts himself to suit the world. > Therefore, all progress depends upon the unreasonable man. > Bernard Shaw > > ---------------------------------------------------------------------------- > ---- > If you ever hope to change something, don't 'accept' it. > > Acceptance of anything is a double edged sword, because to accept > something > implies that we have decided not to try to change the situation. Sometimes > that is a good thing because there are some conditions that we can't > change..... But we should be very careful about the things we 'accept' as > unchangeable. > > I am noticing more and more that there are people in our society who use > the > argument, 'you must accept the inevitable' to justify the status quo > REGARDLESS of whether the situation is really unchangeable or not...... > Their message is: 'You are powerless to do anything about injustice so the > only healthy response is to accept it......' To which I say: BULL. > > We must make the distinction between the things that really are > unchangeable > and those things that are not. There are many physical conditions that are > unchangeable (at least in our lifetimes), but social conditions and social > customs should almost always be considered 'changeable.' > > It is one thing to say, 'I have a physical hearing loss, and I must accept > that,' and quite another thing to say 'I have a hearing loss and society > treats me like a second class citizen and I must accept that.' Yes, there > are plenty of people (mental health professionals) who will tell us that > the > second statement is not only correct, but also represents healthy > adjustment > ............... Once again, I say, BULL. > > Of course it is much easier to accept the status quo .... if we try to > change an unjust situation we will surely encounter fierce resistance from > those who benefit from the injustice ....... Think about that, just as > there > are those who suffer from injustice, there are also those who benefit from > injustice. How can we identify the people who benefit from injustice? They > are usually the ones who try to convince us that 'life is unfair and there > is nothing that you can do about it.' What that statement really means is > that life is unfair in their favor; they are benefiting from injustice. > They > are trying to talk you out of doing anything that would decrease their > " unfair advantage. " > > In the long run, being 'unreasonable' when we face injustice is a much > healthier response than 'accepting' it, and who knows, we might just end > up > making the world a little better place than it was before......... > > > Re: Inclusion...long > > > > recently i've been encountering a lot of people with the " that person is > > disabled and they and their family need to accept it and move on " sort > of > > attitude... then today i recieved a link to this essay that i found > very... > > poingnant i guess is the word i'm looking for... the general idea is > > accepting phsyical limitations is one thing, but accepting > discrimination > > against those with physical limitations is a totally different animal > > altoghether... thoguht i'd share the link with you guys... http://www. > > saywhatclub.com/essays/ebull.htm let me know what ya'll think > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 April 22, 2006 Report Share Posted April 22, 2006 Cole- Loved the essay!!! I believe that inclusion *is* the way things need to be. Yes, it's got to happen with the right supports, attitudes, etc. But that doesn't mean it's not the right thing when those things aren't there. It means those things need to change! People -- all people regardless of abilities/disabilities, culture, race, gender, etc. -- should be a full and valued member of our society. Is that how it is? No. But does that mean we have to accept that? No!! We have to keep making our ripples and upsetting the apple carts until the world becomes the way it needs to be. Every time we accept the status quo, settle for less, allow ourselves and our children to be treated as less, we perpetuate the injustice. We have got to challenge all of those in our world (from our small world or family to our large global world) to step outside their boxes and begin to do what is right -- not what's always been done, what is easiest, what is most beneficial for them... Oh, I could go on and on. Yes, our kids need their disabled peers. I need female friends because we have that feminine bond. I need you, my CHARGE friends, because we have that bond. I enjoy the company of others who like coffee and chocolate. I feel validated and at ease when I am with others with whom I share something significant. But I wouldn't want to live in an all-female world. Or an all CHARGE world. Or an all coffee-drinkers world. People with disabilities can be fully included in their communities and still enjoy opportunities to socialize, gather, whatever amongst themselves. It's not all or nothing. It's all of everything. 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 April 22, 2006 Report Share Posted April 22, 2006 Cole- Loved the essay!!! I believe that inclusion *is* the way things need to be. Yes, it's got to happen with the right supports, attitudes, etc. But that doesn't mean it's not the right thing when those things aren't there. It means those things need to change! People -- all people regardless of abilities/disabilities, culture, race, gender, etc. -- should be a full and valued member of our society. Is that how it is? No. But does that mean we have to accept that? No!! We have to keep making our ripples and upsetting the apple carts until the world becomes the way it needs to be. Every time we accept the status quo, settle for less, allow ourselves and our children to be treated as less, we perpetuate the injustice. We have got to challenge all of those in our world (from our small world or family to our large global world) to step outside their boxes and begin to do what is right -- not what's always been done, what is easiest, what is most beneficial for them... Oh, I could go on and on. Yes, our kids need their disabled peers. I need female friends because we have that feminine bond. I need you, my CHARGE friends, because we have that bond. I enjoy the company of others who like coffee and chocolate. I feel validated and at ease when I am with others with whom I share something significant. But I wouldn't want to live in an all-female world. Or an all CHARGE world. Or an all coffee-drinkers world. People with disabilities can be fully included in their communities and still enjoy opportunities to socialize, gather, whatever amongst themselves. It's not all or nothing. It's all of everything. 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 April 22, 2006 Report Share Posted April 22, 2006 Cole- I agree that school should be more individualized for all children. I wish there were laws to protect the educational rights of our typical kids. They are guaranteed an education -- but there's no protection of the quality of that. Not like IDEA. I have issues with IDEA too. I think there needs to be a governing, regulating body. There needs to be an impartial advocacy person in each county or district to support parents through the system and to support schools in doing the right thing. And to make sure the laws are being followed. To expect parents to be the police is just ridiculous! As far as inclusion -- I think all of the specialists and regular educators need to work together. There's no reason all of those special programs and services can't be provided in every school and every classroom. I love the phrase: Special education is a service not a place. You shouldn't have to go away from your home school to get what you need. Just as you shouldn't have to move away from your home or community to get the supports needed for independent adult living. Now, I know that the reality is that there aren't enough specialists to be in every school and every classroom. But that doesn't mean there can't be... someday. Many of the " special " things that are done for our kids are things that would benefit all kids. Good teachers learn from teaching kids with special needs and take those things they learn and apply them to being better teachers of all children. 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 April 22, 2006 Report Share Posted April 22, 2006 Cole- I agree that school should be more individualized for all children. I wish there were laws to protect the educational rights of our typical kids. They are guaranteed an education -- but there's no protection of the quality of that. Not like IDEA. I have issues with IDEA too. I think there needs to be a governing, regulating body. There needs to be an impartial advocacy person in each county or district to support parents through the system and to support schools in doing the right thing. And to make sure the laws are being followed. To expect parents to be the police is just ridiculous! As far as inclusion -- I think all of the specialists and regular educators need to work together. There's no reason all of those special programs and services can't be provided in every school and every classroom. I love the phrase: Special education is a service not a place. You shouldn't have to go away from your home school to get what you need. Just as you shouldn't have to move away from your home or community to get the supports needed for independent adult living. Now, I know that the reality is that there aren't enough specialists to be in every school and every classroom. But that doesn't mean there can't be... someday. Many of the " special " things that are done for our kids are things that would benefit all kids. Good teachers learn from teaching kids with special needs and take those things they learn and apply them to being better teachers of all children. 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 April 23, 2006 Report Share Posted April 23, 2006 OK, so before I get anyone upset I should say that when Patty was born we were told she would be totally deaf, totally blind, would never walk, talk or be independent in any way. With that we were told to institutionalize her. That conversation will stay with me for eternity. We also were continually told to put her in a contained class for individuals who had limited intelligence. We fought that till the day she graduated. Patty walked, talked, heard, saw, and became incredibly independent. Patty became what they said she couldn't and wouldn't. And we had to fight those opinions and limitations every single stinking year. She continues to prove even the best specialists wrong. We have fought to remove limitations and barriers and will seemingly always have to. We do that because that is what is right for her. So you can see where my heart, dreams and my thoughts are. We pushed and pushed and did everything and beyond to make sure Patty had the most appropriate least restrictive educational environment. We still push for her. She always overcame what people said was an impossibility. Patty not only did all that they said she couldn't or wouldn't but she continues to grow and overcome obstacles. She is not done learning. But who of us is. I have always fought for acceptance of her by all. I expect nothing less. Patty was educated in the regular ed setting. Always was by age 5 and never stopped until she graduated. Actually it was called mainstreamed. That's because Patty was able to be educated with the same curriculum that was modified to meet her needs. It is also said that I have fought down and dirty for her. That's just not true. I have stood up for truth. I have stood up and not let people identify her as anything but Patty. I knew the laws, curriculum, and the players. I wouldn't bow down to anything that wasn't appropriate for her. I fought for all to understand the impact of her disabilities but wouldn't let them limit her. And I wouldn't let anyone push her into something she just couldn't and wouldn't ever be able to do. I did it all because that was right for Patty. It is right for many. But in my heart and my experience I can see that what we did for Patty it isn't right for all. Sometimes for a child to learn and get those barriers removed has to be done a different way, including outplacement. , when I wrote that post I was thinking of you and wondering how you would take it. In all truth I totally believe in inclusion for all. But I have painfully found that it isn't something that will be possible to happen for all and isn't appropriate for all--at this time. I will continue to try to not only make those ripples, but try to gather us together to make those huge waves. But in the meantime I will also continue to make sure that the reality of the situation for each and every individual at the time is one that is safe and healthy and appropriate. Honestly there is something to be said for the full continuum of services. We don't protect everyone. , we live in the world that you are making. I have fought for that world since Patty was born and I will stand beside you and fight for it always. We have to remove those barriers. You are a woman of great knowledge and great passion. You are in the position you are in to make a difference. We all have learned much and must teach those what we have learned. I am just saying what is right for one isn't right for all. Sometimes we must protect those who aren't protected. We also must allow various types of education for various needs. There is a great need for the entire continuum of services and that goes beyond educational years too. We can and should support everyone. And we can all do it together. Sorry for yet another long post. 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 April 23, 2006 Report Share Posted April 23, 2006 OK, so before I get anyone upset I should say that when Patty was born we were told she would be totally deaf, totally blind, would never walk, talk or be independent in any way. With that we were told to institutionalize her. That conversation will stay with me for eternity. We also were continually told to put her in a contained class for individuals who had limited intelligence. We fought that till the day she graduated. Patty walked, talked, heard, saw, and became incredibly independent. Patty became what they said she couldn't and wouldn't. And we had to fight those opinions and limitations every single stinking year. She continues to prove even the best specialists wrong. We have fought to remove limitations and barriers and will seemingly always have to. We do that because that is what is right for her. So you can see where my heart, dreams and my thoughts are. We pushed and pushed and did everything and beyond to make sure Patty had the most appropriate least restrictive educational environment. We still push for her. She always overcame what people said was an impossibility. Patty not only did all that they said she couldn't or wouldn't but she continues to grow and overcome obstacles. She is not done learning. But who of us is. I have always fought for acceptance of her by all. I expect nothing less. Patty was educated in the regular ed setting. Always was by age 5 and never stopped until she graduated. Actually it was called mainstreamed. That's because Patty was able to be educated with the same curriculum that was modified to meet her needs. It is also said that I have fought down and dirty for her. That's just not true. I have stood up for truth. I have stood up and not let people identify her as anything but Patty. I knew the laws, curriculum, and the players. I wouldn't bow down to anything that wasn't appropriate for her. I fought for all to understand the impact of her disabilities but wouldn't let them limit her. And I wouldn't let anyone push her into something she just couldn't and wouldn't ever be able to do. I did it all because that was right for Patty. It is right for many. But in my heart and my experience I can see that what we did for Patty it isn't right for all. Sometimes for a child to learn and get those barriers removed has to be done a different way, including outplacement. , when I wrote that post I was thinking of you and wondering how you would take it. In all truth I totally believe in inclusion for all. But I have painfully found that it isn't something that will be possible to happen for all and isn't appropriate for all--at this time. I will continue to try to not only make those ripples, but try to gather us together to make those huge waves. But in the meantime I will also continue to make sure that the reality of the situation for each and every individual at the time is one that is safe and healthy and appropriate. Honestly there is something to be said for the full continuum of services. We don't protect everyone. , we live in the world that you are making. I have fought for that world since Patty was born and I will stand beside you and fight for it always. We have to remove those barriers. You are a woman of great knowledge and great passion. You are in the position you are in to make a difference. We all have learned much and must teach those what we have learned. I am just saying what is right for one isn't right for all. Sometimes we must protect those who aren't protected. We also must allow various types of education for various needs. There is a great need for the entire continuum of services and that goes beyond educational years too. We can and should support everyone. And we can all do it together. Sorry for yet another long post. 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 April 23, 2006 Report Share Posted April 23, 2006 Bonnie- I agree in the full continuum also. Actually - everything you said I can agree with. I think we're on the same page. What really bothers me is when people say inclusion doesn't work and base that statement on a poorly done model. I'm sorry if I got you upset. I think we're both saying the same things. I know our hearts are together. 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 April 23, 2006 Report Share Posted April 23, 2006 Bonnie- I agree in the full continuum also. Actually - everything you said I can agree with. I think we're on the same page. What really bothers me is when people say inclusion doesn't work and base that statement on a poorly done model. I'm sorry if I got you upset. I think we're both saying the same things. I know our hearts are together. 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 April 23, 2006 Report Share Posted April 23, 2006 i think what we're all saying is that inclusion *can* work but i also think we can all agree that it doesn't work for *everyone*. that is largely due to the fact the some people refuse to try - but i also think that it's partly due to the way some people learn - i really believe that. i also really believe that the decision must be made on an individual basis by the most well-informed people available to make it - and since the parents are the ones making the decision (usually) then those parents need to be the most well-informed -- we all know the school doesn't always tell everything - the government doesn't always tell everything -- parents have to really dig for the truth -- i feel like on this group i have met some of the most self-educated parents out there -- i know some of the kids on this group have gone to residential schools and some are home schooled and some are in public school - isolation or mainstreamed - and i really have faith that those were the correct individual decisions for each of those kids that to say this... we have something very incredible on this group -- parents who care enough to do *anything* to make sure their child gets whats the *very best* for them... i think most of you think any parent would do what you're doing and have done all of your child's life... but i suspect there are CHARGEr's out there who have parents who didn't really fight for what was best, but instead went with exactly what they were told or what was easiest (for the parent)... we may or may not have some of them on this list (as adult-chargers) but i suspect there are many out there with no resource such as this because of the ignorance or apathy of their parents. and by ignorance i mean lack of knowledge not stupidity - there's a difference... what i mean is... *not every parent* would do what you do in your situation -- your CHARGEr's are just as fortunate to have you as you are to have them - i think i just needed for you to know that - as an outsider looking in, i'm so very impressed with the level of parenting i see here - so often i see a much lower level being provided by people who (possibly) need to - and are capable of - giving even more. (that's grammatically screwy but you know what i mean right?) just my $.02 cents if you couldn't tell that was meant as a compliment - please don't take it offensively. Cole > > Bonnie- > I agree in the full continuum also. Actually - everything you said I can > agree with. I think we're on the same page. What really bothers me is > when > people say inclusion doesn't work and base that statement on a poorly done > model. > > I'm sorry if I got you upset. I think we're both saying the same things. > I > know our hearts are together. > > > 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 group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 April 23, 2006 Report Share Posted April 23, 2006 i think what we're all saying is that inclusion *can* work but i also think we can all agree that it doesn't work for *everyone*. that is largely due to the fact the some people refuse to try - but i also think that it's partly due to the way some people learn - i really believe that. i also really believe that the decision must be made on an individual basis by the most well-informed people available to make it - and since the parents are the ones making the decision (usually) then those parents need to be the most well-informed -- we all know the school doesn't always tell everything - the government doesn't always tell everything -- parents have to really dig for the truth -- i feel like on this group i have met some of the most self-educated parents out there -- i know some of the kids on this group have gone to residential schools and some are home schooled and some are in public school - isolation or mainstreamed - and i really have faith that those were the correct individual decisions for each of those kids that to say this... we have something very incredible on this group -- parents who care enough to do *anything* to make sure their child gets whats the *very best* for them... i think most of you think any parent would do what you're doing and have done all of your child's life... but i suspect there are CHARGEr's out there who have parents who didn't really fight for what was best, but instead went with exactly what they were told or what was easiest (for the parent)... we may or may not have some of them on this list (as adult-chargers) but i suspect there are many out there with no resource such as this because of the ignorance or apathy of their parents. and by ignorance i mean lack of knowledge not stupidity - there's a difference... what i mean is... *not every parent* would do what you do in your situation -- your CHARGEr's are just as fortunate to have you as you are to have them - i think i just needed for you to know that - as an outsider looking in, i'm so very impressed with the level of parenting i see here - so often i see a much lower level being provided by people who (possibly) need to - and are capable of - giving even more. (that's grammatically screwy but you know what i mean right?) just my $.02 cents if you couldn't tell that was meant as a compliment - please don't take it offensively. Cole > > Bonnie- > I agree in the full continuum also. Actually - everything you said I can > agree with. I think we're on the same page. What really bothers me is > when > people say inclusion doesn't work and base that statement on a poorly done > model. > > I'm sorry if I got you upset. I think we're both saying the same things. > I > know our hearts are together. > > > 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 group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 April 23, 2006 Report Share Posted April 23, 2006 i think what we're all saying is that inclusion *can* work but i also think we can all agree that it doesn't work for *everyone*. that is largely due to the fact the some people refuse to try - but i also think that it's partly due to the way some people learn - i really believe that. i also really believe that the decision must be made on an individual basis by the most well-informed people available to make it - and since the parents are the ones making the decision (usually) then those parents need to be the most well-informed -- we all know the school doesn't always tell everything - the government doesn't always tell everything -- parents have to really dig for the truth -- i feel like on this group i have met some of the most self-educated parents out there -- i know some of the kids on this group have gone to residential schools and some are home schooled and some are in public school - isolation or mainstreamed - and i really have faith that those were the correct individual decisions for each of those kids that to say this... we have something very incredible on this group -- parents who care enough to do *anything* to make sure their child gets whats the *very best* for them... i think most of you think any parent would do what you're doing and have done all of your child's life... but i suspect there are CHARGEr's out there who have parents who didn't really fight for what was best, but instead went with exactly what they were told or what was easiest (for the parent)... we may or may not have some of them on this list (as adult-chargers) but i suspect there are many out there with no resource such as this because of the ignorance or apathy of their parents. and by ignorance i mean lack of knowledge not stupidity - there's a difference... what i mean is... *not every parent* would do what you do in your situation -- your CHARGEr's are just as fortunate to have you as you are to have them - i think i just needed for you to know that - as an outsider looking in, i'm so very impressed with the level of parenting i see here - so often i see a much lower level being provided by people who (possibly) need to - and are capable of - giving even more. (that's grammatically screwy but you know what i mean right?) just my $.02 cents if you couldn't tell that was meant as a compliment - please don't take it offensively. Cole > > Bonnie- > I agree in the full continuum also. Actually - everything you said I can > agree with. I think we're on the same page. What really bothers me is > when > people say inclusion doesn't work and base that statement on a poorly done > model. > > I'm sorry if I got you upset. I think we're both saying the same things. > I > know our hearts are together. > > > 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 group does not constitute membership in > the CHARGE Syndrome Foundation; 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 > > 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 April 24, 2006 Report Share Posted April 24, 2006 Michele, Oh dear no, I am not upset. I didn't want you to be. Nothing really works for our kids, inclusion or not, because our kids don't fit programs. They have to be made to fit. But isn't that what he definition of an IEP is anyway! I was concerned about your feelings because yes, our hearts are together. So are our girls. You know my dreams for everyone. 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 April 24, 2006 Report Share Posted April 24, 2006 Michele, Oh dear no, I am not upset. I didn't want you to be. Nothing really works for our kids, inclusion or not, because our kids don't fit programs. They have to be made to fit. But isn't that what he definition of an IEP is anyway! I was concerned about your feelings because yes, our hearts are together. So are our girls. You know my dreams for everyone. 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 April 24, 2006 Report Share Posted April 24, 2006 Michele, Oh dear no, I am not upset. I didn't want you to be. Nothing really works for our kids, inclusion or not, because our kids don't fit programs. They have to be made to fit. But isn't that what he definition of an IEP is anyway! I was concerned about your feelings because yes, our hearts are together. So are our girls. You know my dreams for everyone. 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 April 24, 2006 Report Share Posted April 24, 2006 Ellen you and alex inspire me i allwyas say you must of been a lawyer in another like mum xxxxxx > > Michele, > > Oh dear no, I am not upset. I didn't want you to be. > > Nothing really works for our kids, inclusion or not, because our kids > don't > fit programs. They have to be made to fit. But isn't that what he > definition > of an IEP is anyway! > > I was concerned about your feelings because yes, our hearts are > together. So > are our girls. > > You know my dreams for everyone. > > > 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 April 24, 2006 Report Share Posted April 24, 2006 michelle that is true teachers learn from those with special needs mine have learnt so much my mainschool teachers allways maxe me wonder they would let me have water coz they knew i need it but tohers they never did hmmmmmmmm > > Ellen you and alex inspire me i allwyas say you must of been a lawyer in > another like mum xxxxxx > > > > > > > Michele, > > > > Oh dear no, I am not upset. I didn't want you to be. > > > > Nothing really works for our kids, inclusion or not, because our kids > > don't > > fit programs. They have to be made to fit. But isn't that what he > > definition > > of an IEP is anyway! > > > > I was concerned about your feelings because yes, our hearts are > > together. So > > are our girls. > > > > You know my dreams for everyone. > > > > > > 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 April 24, 2006 Report Share Posted April 24, 2006 we all should make a charge corriculum for teachers and professioals and educate them i remember when i ocd on my hair or ate or chewed fingers at school my teacher the main one allways said y i said its charge she said you cant make charge an excuse but we CAN coz that is y we do it right? > > michelle that is true teachers learn from those with special needs mine > have learnt so much my mainschool teachers allways maxe me wonder they would > let me have water coz they knew i need it but tohers they never did > hmmmmmmmm > > > > > > > Ellen you and alex inspire me i allwyas say you must of been a lawyer in > > another like mum xxxxxx > > > > > > > > > > > > Michele, > > > > > > Oh dear no, I am not upset. I didn't want you to be. > > > > > > Nothing really works for our kids, inclusion or not, because our kids > > > don't > > > fit programs. They have to be made to fit. But isn't that what he > > > definition > > > of an IEP is anyway! > > > > > > I was concerned about your feelings because yes, our hearts are > > > together. So > > > are our girls. > > > > > > You know my dreams for everyone. > > > > > > > > > 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 April 24, 2006 Report Share Posted April 24, 2006 we all should make a charge corriculum for teachers and professioals and educate them i remember when i ocd on my hair or ate or chewed fingers at school my teacher the main one allways said y i said its charge she said you cant make charge an excuse but we CAN coz that is y we do it right? > > michelle that is true teachers learn from those with special needs mine > have learnt so much my mainschool teachers allways maxe me wonder they would > let me have water coz they knew i need it but tohers they never did > hmmmmmmmm > > > > > > > Ellen you and alex inspire me i allwyas say you must of been a lawyer in > > another like mum xxxxxx > > > > > > > > > > > > Michele, > > > > > > Oh dear no, I am not upset. I didn't want you to be. > > > > > > Nothing really works for our kids, inclusion or not, because our kids > > > don't > > > fit programs. They have to be made to fit. But isn't that what he > > > definition > > > of an IEP is anyway! > > > > > > I was concerned about your feelings because yes, our hearts are > > > together. So > > > are our girls. > > > > > > You know my dreams for everyone. > > > > > > > > > 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 April 25, 2006 Report Share Posted April 25, 2006 Ellen- CHARGE is not an " excuse " -- it's a " reason " ! And, yes, you have to use CHARGE to explain yourself. I was pleased today because the woman working wiht Aubrie was glowing about how confident and capable she is. No whining. No " I can't do that because I can't see well enough " or " I can't because of this " or " I can't because of that " or " It's too hard " . Just loads of enthusiasm and trying her best. So you do have to be careful that CHARGE isn't an excuse to get out of something you " can " do but just don't " want " to do. I feel pretty confident that you know the difference and aren't one of those people who use their disability in that way. Teachers may assume that that's what a person is doing when they explain something in terms of their disability. But then you just have to clarify to them that it's a valid explanation --not an excuse. And then poop on them in they don't get it. Cuz you know there'll be plenty of people out there who simply don't get it. Michele Aubrie's mom Quote Link to comment Share on other sites More sharing options...
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