Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 In light of the posts by by the new york times and about insurance, and your plea...maybe we should try agreeing on one goal...therapy that increases an individuals ability to communicate are certainly the most helpful to the individual and the parents. Yet speech is hard to get in the school system, especially one on one, and the type our kids need is not often what they get. If we could narrow it down to one goal that enhances everyone's life, maybe we could prove what we parents know...that there are many valid therapies that enhance communication in different ways. I have seen so many kids that i truly believe could communicate if something had been available. This is a goal that is top priority when we first find out. If we narrow the goal, and prove that a therapy to enhance communication is effective, we CAN get insurance to cover it. And disability insurance. We could insist that babies cant wait continue beyond the age of three, the age when many children's lack of communication is just being diagnosed as autism. So many children miss the more nurturing environments that babies cant wait can provide, and are instead at the age of three given to the public school system to teach. And we all know that they as a whole dont do a very good job. When my daughter could not communicate, it frustrated her into constant meltdowns. What she communicates today is most of her feelings, and so many other things i never imagined when she was three...or six...and i know it will continue, because with communication comes understanding of what is going on in the world. But this is a goal for the young, a goal in proving something works for the young. We have to have a goal for children aging out, and adults who are trying to find independence. I dont know what is needed there. How many parents of young kids do know what is going on with the older kids and young adults? How much does it scare you not to know what will happen at 18? Or if we, the parents, arent around? I know i'm not alone in these fears, so i know we can unite to help this group, too. We just need to know what is needed, dont we? Just my thoughts, Scarlett - In autism , " E. , Sr. " <peaceforkids2005@h...> wrote: > > ** WE MUST UNITE AS ONE ** > WE ARE A TEAM...........All of our groups......all of our in person > groups.........we all make up ONE VERY STRONG LOBBY....... if we > would just ALL JOIN Something !!!!!! ASA didn't work..... FEAT sorta > worked......Many local groups are somewhat slow..... BUT, > TOGETHER.....ALL OF US parents could make a difference..... We > really need to join together by the hundreds of thousands.....and > create an ASD Lobby that even the pharmies have to fight. WE CAN > MAKE A DIFFERENCE......... WE JUST NEED TO UNITE......... > Thats what we are missing.......UNITY. > It won't be easy.....and will take ALOT OF WORK BY MANY to UNITE all > state, local, and National groups..... CAN WE DO IT ? > > WE MUST UNITE....ALL THE GROUPS.....FROM , MSN, and In Person > Groups.... THEN......and ONLY THEN...........will we have the > numbers to throw down at Legislators...a large number of potential > voters.... Can we try ? > > E.,Sr USCRLDC,CA.DoD Dir, The Office of Advocacy > Peaceforkids2005@h... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 tjmrjmrjm wrote: > > In light of the posts by by the new york times and about > insurance, and your plea...maybe we should try agreeing on one > goal...therapy that increases an individuals ability to communicate > are certainly the most helpful to the individual and the parents. > Yet speech is hard to get in the school system, especially one on > one, and the type our kids need is not often what they get. > > If we could narrow it down to one goal that enhances everyone's > life, maybe we could prove what we parents know...that there are > many valid therapies that enhance communication in different ways. > I have seen so many kids that i truly believe could communicate if > something had been available. This is a goal that is top priority > when we first find out. Communication is basic. However, in a large proportion of autistics there is poor control of the muscles that produce speech. Poor brain processing of sounds also affects a high proportion. As a result, it's not only difficult to figure out which sounds make up the speech we need to learn, it's also very difficult to contol our breath and produce the sounds. I, personally, didn't understand what sounds words were supposed to have until I was taught to read. Suddenly I had the phonetic key to how each word was to be pronounced. Up until then I basically had no way to communicate verbally. Even now, I have a limit on how long I can talk -- confusion/stress from trying to understand the sounds people are making at me, plus exhaustion of the throat and facial muscles conspire to limit me to about an hour a day of verbal interaction. So much for day-long conferences or cocktail parties! We need to provide keyboard machines for text-to-speech or other methods of nonverbal communication in the schools. This is not being done. Children with normal intelligence and no way to communicate are being " graduated " and thrown into the communitiy with no way to convey their preferences to caregivers, and no way to work toward independence as productive members of society. This is WRONG. The website http://aac.unl.edu/yaack/b5.html connects to discussion groups of users of these augmentative communication devices that explain their use and utility. No one should be willing to allow their child to pass into adulthood without at least a good try at learning to use a device to enhance communication at school and AT HOME. Often the devices are controlled by schools and the child is not allowed to take them home to use them. > If we narrow the goal, and prove that a therapy to enhance > communication is effective, we CAN get insurance to cover it. And > disability insurance. We could insist that babies cant wait > continue beyond the age of three, the age when many children's lack > of communication is just being diagnosed as autism. So many > children miss the more nurturing environments that babies cant wait > can provide, and are instead at the age of three given to the public > school system to teach. And we all know that they as a whole dont > do a very good job. > > When my daughter could not communicate, it frustrated her into > constant meltdowns. What she communicates today is most of her > feelings, and so many other things i never imagined when she was > three...or six...and i know it will continue, because with > communication comes understanding of what is going on in the world. > > But this is a goal for the young, a goal in proving something works > for the young. We have to have a goal for children aging out, and > adults who are trying to find independence. I dont know what is > needed there. How many parents of young kids do know what is going > on with the older kids and young adults? How much does it scare you > not to know what will happen at 18? Or if we, the parents, arent > around? I know i'm not alone in these fears, so i know we can unite > to help this group, too. We just need to know what is needed, dont > we? > > Just my thoughts, > Scarlett Speech is important, of course, but it might not come easily or early. My life partner couldn't speak understandably until he was 11, but that hasn't kept him from being productive, self-supporting, and an asset to the community. Let's approach autism realistically -- develop what can be developed by each child and accept that autism exists -- it will be a part of the child's makeup, but shouldn't keep him from being part of society. Patty http://www.autistics.cc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 > > > > In light of the posts by by the new york times and about > > insurance, and your plea...maybe we should try agreeing on one > > goal...therapy that increases an individuals ability to communicate > > are certainly the most helpful to the individual and the parents. > > Yet speech is hard to get in the school system, especially one on > > one, and the type our kids need is not often what they get. > > > > If we could narrow it down to one goal that enhances everyone's > > life, maybe we could prove what we parents know...that there are > > many valid therapies that enhance communication in different ways. > > I have seen so many kids that i truly believe could communicate if > > something had been available. This is a goal that is top priority > > when we first find out. > > Communication is basic. However, in a large proportion of autistics > there is poor control of the muscles that produce speech. Poor brain > processing of sounds also affects a high proportion. As a result, it's > not only difficult to figure out which sounds make up the speech we need > to learn, it's also very difficult to contol our breath and produce the > sounds. > > I, personally, didn't understand what sounds words were supposed to have > until I was taught to read. Suddenly I had the phonetic key to how each > word was to be pronounced. Up until then I basically had no way to > communicate verbally. Even now, I have a limit on how long I can talk > -- confusion/stress from trying to understand the sounds people are > making at me, plus exhaustion of the throat and facial muscles conspire > to limit me to about an hour a day of verbal interaction. So much for > day-long conferences or cocktail parties! > > We need to provide keyboard machines for text-to-speech or other methods > of nonverbal communication in the schools. This is not being done. > Children with normal intelligence and no way to communicate are being > " graduated " and thrown into the communitiy with no way to convey their > preferences to caregivers, and no way to work toward independence as > productive members of society. This is WRONG. > > The website http://aac.unl.edu/yaack/b5.html connects to discussion > groups of users of these augmentative communication devices that explain > their use and utility. No one should be willing to allow their child to > pass into adulthood without at least a good try at learning to use a > device to enhance communication at school and AT HOME. Often the > devices are controlled by schools and the child is not allowed to take > them home to use them. > > > If we narrow the goal, and prove that a therapy to enhance > > communication is effective, we CAN get insurance to cover it. And > > disability insurance. We could insist that babies cant wait > > continue beyond the age of three, the age when many children's lack > > of communication is just being diagnosed as autism. So many > > children miss the more nurturing environments that babies cant wait > > can provide, and are instead at the age of three given to the public > > school system to teach. And we all know that they as a whole dont > > do a very good job. > > > > When my daughter could not communicate, it frustrated her into > > constant meltdowns. What she communicates today is most of her > > feelings, and so many other things i never imagined when she was > > three...or six...and i know it will continue, because with > > communication comes understanding of what is going on in the world. > > > > But this is a goal for the young, a goal in proving something works > > for the young. We have to have a goal for children aging out, and > > adults who are trying to find independence. I dont know what is > > needed there. How many parents of young kids do know what is going > > on with the older kids and young adults? How much does it scare you > > not to know what will happen at 18? Or if we, the parents, arent > > around? I know i'm not alone in these fears, so i know we can unite > > to help this group, too. We just need to know what is needed, dont > > we? > > > > Just my thoughts, > > Scarlett > > Speech is important, of course, but it might not come easily or early. > My life partner couldn't speak understandably until he was 11, but that > hasn't kept him from being productive, self-supporting, and an asset to > the community. > > Let's approach autism realistically -- develop what can be developed by > each child and accept that autism exists -- it will be a part of the > child's makeup, but shouldn't keep him from being part of society. > > Patty > http://www.autistics.cc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 We are on the same page as for what we think kids in school need. I've asked for augmentative communication devices for my child for years, and finally got an eval this year. The evaluator was OUTSTANDING....she really knew her stuff, and i was under the impression we would get a typing machine, a ten key calculator, and some kind of headphones to block out sound. In the IEP meetings, and in personal conversations, the only thing ever mentioned was for typing. I would argue, and ask that i be put in contact with the evaluator, to no avail. I never saw the one peice of equipment, and was told that my daughter wasnt in attendance when it would be used. (we were doing part days). Every single person that denied her that and gave a reason for it is full of crap, and i dont want my child around people who only fight for themselves. They were try to either save money, or keep a precedent from being set. Saving money in a state who's education department sent 3 million dollars of monies appropriated for education BACK to the government, isnt a priority. Finding people who know how to get and spend it should be. As for speech...speech and communication are not the same. But it is always the speech teacher the schools put communication skills work on(if you are lucky enough to get speech at all). I dont know how to talk about something that doesnt exist, ie., someone who understands how to teach communication on it's most rudimentary levels. This is an area to work on making happen, though. If enough speech teachers were upset because they didnt feel qualified, or because this isnt in thier job description, seems to me a new position of communication specialist might be in order. I know that not all people become verbal to communicate. My daughter is verbal, but she has trouble writing(my hands cramped as a kid, and i wonder if hers does), and it takes away from what she gets out of some lessons. I used sign language combined with PECS (my version), and OT. It took six months of one on one for one word, but we did it. I do child led teaching, so she was always happy, but it still took that long. I would speak into her hand, and let her feel the words coming out of my throat. It was years before that one word turned into sentences. But i believe everyone can learn to communicate in some way, and your right, we need the schools offering the equipment. I'd like to see some other entity taking care of this until our kids are older though, because the school does not have the same desires that we do. I just wanted my daughter to get through a day without being upset. But she was upset because i didnt read her mind, a skill i've now added:0). We can fight for the individuals rights, but if we keep making it so broad a request, i think people get overwhelmed and dont know where to begin, so they do nothing. I learned this from my doctors. I'd bombard them with so many things, they didnt know where to begin...and often did nothing. It all became legitimized, but the fact is, i overwhelmed them so much, they blamed it on me, and sent me on. I learned in my IEP's to ask for one thing at a time....instead of bombarding them with lots of things. Funny, no matter how i've handled the school, gently or firmly, they still only do the minimum. Maybe we could unite over the fact that the state of Georgia is not offering one program that sufficiently works with our children as a whole. But, unless we are all efficiently organized, we dont have the paper proof. I know from personal experience, one person will not change things. Taking it through the system into the courts is the only way to change it. But, it will change for that one child, not for the whole of our children, if we dont go at it together. All people, regardless of race, religion, gender, sexual orientation, or disability deserve to just live as they are. But these are the very issues we've fought over forever for humans in this country. Somehow we have to find a way to do something for one group that could not be completely accomplished in the general society. How? Scarlett > > > > > > In light of the posts by by the new york times and > about > > > insurance, and your plea...maybe we should try agreeing on one > > > goal...therapy that increases an individuals ability to > communicate > > > are certainly the most helpful to the individual and the > parents. > > > Yet speech is hard to get in the school system, especially one > on > > > one, and the type our kids need is not often what they get. > > > > > > If we could narrow it down to one goal that enhances everyone's > > > life, maybe we could prove what we parents know...that there are > > > many valid therapies that enhance communication in different > ways. > > > I have seen so many kids that i truly believe could communicate > if > > > something had been available. This is a goal that is top > priority > > > when we first find out. > > > > Communication is basic. However, in a large proportion of > autistics > > there is poor control of the muscles that produce speech. Poor > brain > > processing of sounds also affects a high proportion. As a result, > it's > > not only difficult to figure out which sounds make up the speech > we need > > to learn, it's also very difficult to contol our breath and > produce the > > sounds. > > > > I, personally, didn't understand what sounds words were supposed > to have > > until I was taught to read. Suddenly I had the phonetic key to > how each > > word was to be pronounced. Up until then I basically had no way > to > > communicate verbally. Even now, I have a limit on how long I can > talk > > -- confusion/stress from trying to understand the sounds people > are > > making at me, plus exhaustion of the throat and facial muscles > conspire > > to limit me to about an hour a day of verbal interaction. So much > for > > day-long conferences or cocktail parties! > > > > We need to provide keyboard machines for text-to-speech or other > methods > > of nonverbal communication in the schools. This is not being > done. > > Children with normal intelligence and no way to communicate are > being > > " graduated " and thrown into the communitiy with no way to convey > their > > preferences to caregivers, and no way to work toward independence > as > > productive members of society. This is WRONG. > > > > The website http://aac.unl.edu/yaack/b5.html connects to > discussion > > groups of users of these augmentative communication devices that > explain > > their use and utility. No one should be willing to allow their > child to > > pass into adulthood without at least a good try at learning to use > a > > device to enhance communication at school and AT HOME. Often the > > devices are controlled by schools and the child is not allowed to > take > > them home to use them. > > > > > If we narrow the goal, and prove that a therapy to enhance > > > communication is effective, we CAN get insurance to cover it. > And > > > disability insurance. We could insist that babies cant wait > > > continue beyond the age of three, the age when many children's > lack > > > of communication is just being diagnosed as autism. So many > > > children miss the more nurturing environments that babies cant > wait > > > can provide, and are instead at the age of three given to the > public > > > school system to teach. And we all know that they as a whole > dont > > > do a very good job. > > > > > > When my daughter could not communicate, it frustrated her into > > > constant meltdowns. What she communicates today is most of her > > > feelings, and so many other things i never imagined when she was > > > three...or six...and i know it will continue, because with > > > communication comes understanding of what is going on in the > world. > > > > > > But this is a goal for the young, a goal in proving something > works > > > for the young. We have to have a goal for children aging out, > and > > > adults who are trying to find independence. I dont know what is > > > needed there. How many parents of young kids do know what is > going > > > on with the older kids and young adults? How much does it scare > you > > > not to know what will happen at 18? Or if we, the parents, > arent > > > around? I know i'm not alone in these fears, so i know we can > unite > > > to help this group, too. We just need to know what is needed, > dont > > > we? > > > > > > Just my thoughts, > > > Scarlett > > > > Speech is important, of course, but it might not come easily or > early. > > My life partner couldn't speak understandably until he was 11, but > that > > hasn't kept him from being productive, self-supporting, and an > asset to > > the community. > > > > Let's approach autism realistically -- develop what can be > developed by > > each child and accept that autism exists -- it will be a part of > the > > child's makeup, but shouldn't keep him from being part of society. > > > > Patty > > http://www.autistics.cc Quote Link to comment Share on other sites More sharing options...
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