Leaving the warm, accepting family of folks who attend the Autcom conference every year is hard for me to do. What must it be like for those who are on the autism spectrum and have to return to the real world where so many people they meet every day just don't get it?
Since my return, I have:
(1) spent a couple hours catching up with a dear friend who is still spending time in the local schools, working as a substitute aide or teacher, mostly with young kids who have special needs. Her lament that school staff are overworked and underprepared started the heartbreak process. The teachers and assistants care, they want the kids to succeed, but the cards are stacked against them. There are too many kids with too many needs (and of course not all of them have special ed. labels - there are just a lot of needy kids these days). Many schools are proud to offer "full inclusion" - but in some cases that means there's no place to go when a child is feeling overwhelmed and in need of some down time. Worse yet, too many of those who work with the kids don't have an understanding of the many various sensory issues these kids might be dealing with.
(2) met with a young guy in a very supportive school setting, who is frustrated by the "boring" work he is being given. He wants me to be there with him every day so that he can show his teachers what he's capable of doing. He says he loves school, but how long will that last if his intelligence isn't recognized?
(3) talked on the phone with a parent who lives far, far away. Her son has had two fabulous years at school, using FC for school work, and being fully accepted for who he is. Now he's in a new school, with all new staff, and while they are trying, it's just not working at this point. He's showing his frustration by biting his hand, even lashing out toward others. He's able to use FC at home to tell his mom he's tired of having autism, tired of having to deal with all the struggles that go along with living in his body, tired of waiting for people around him to see who he really is.
And, (4) exchanged email messages with yet another mom (also far, far away) whose daughter has used FC with me in the past, but hasn't had much success using it to express her thoughts and feelings with anyone else. She too is dealing with frustration and anger because life is so difficult when you can't communicate what you are thinking. People around her question the validity of what she has typed in the past, and have no real understanding of her true abilities.
On the other hand, I was able to meet with a friend who used FC just last week to tell me just how depressed he was because things in his life haven't changed fast enough, and he too was tired of living in a body that won't do what he wants it to do. Telling him the various stories of my wonderful weekend with the Autcom folks clearly brightened his outlook, and he kept begging for more. "I JUST NEED YOUR POSITIVE ENERGY EVERY DAY. I NEED TO HEAR MORE STORIES. I NEED TO TYPE ALL THE TIME."
I too need that positive energy every day, and my heart wishes my body could be present for every one of these young people as they go through their day. I don't really need to hear any more stories. I just need to see more people opening their minds and hearts to exciting new possibilities. We are all getting tired of waiting.
Friday, October 2, 2009
Wednesday, September 30, 2009
Autcom impressions
I just returned from the annual get-together of the Autism National Committee - http://www.autcom.org - and am filled with awe and inspiration.
What sets this particular group apart from the rest is that it's run by and for people with autism, with a strong focus on all that is good and positive about being somewhere on the autism spectrum. I have been attending their conferences for several years now and have never been disappointed in any way.
Rather than go on for far longer than anyone would want to read, I will try to summarize, and of course that means I am running the risk of missing something important. My best advice: visit the web site; make plans to attend the next conference, October 15 and 16, 2010 in Milwaukee, Wisconsin. (Practically in my backyard - can't wait!)
Three very strong audio-visual presentations included (1) "The Power of Words" - a stirring reminder that how we talk about people, ourselves and others, means a LOT. Mayer Shevin wrote the original ("The Language of Us and Them"), and Judy Endow put together this powerful PowerPoint presentation, with music composed and played by her son Daniel. (2) An impressive and amusing travel documentary in the works featuring two long-time FC users, Larry Bissonnette and Tracy Thresher, who recently traveled with a camera crew to such far-away places as Sri Lanka, Japan and Finland. Both of these amazing men have been typing for a long time now, currently needing little or no physical support - and both are starting to talk by reading what they have typed. It's amazing! (3) Another documentary in progress, the joint project of Rob Rooy and DJ Savarese. The segment we viewed showed a Readers Theater presentation, written and directed by DJ, telling his life story, and put on by his friends and peers at Grinnell High School in Iowa. That young man has talent, and quite a story to tell!
Exciting news from the research field includes a study from MIT showing the high (but often hidden) levels of stress and anxiety that people with autism often experience. Matt Goodwin shared a new way to monitor these varying states of arousal using just a simple wristband to transmit the information. The costs are still far out of reach, but the potential is there for us to have a much better understanding of what might be going on inside.
Along similar lines, Dr. Margaret Baumann talked about exciting new developments at Massachusetts General Hospital, where she has been a pediatric neurologist working with people on the ASD spectrum so long that most of her patients are now adults. There's a large grant now available to improve medical services for these adults, along with a new understanding that many of the behaviors we associate with autism just might have a medical origin. Such issues as mitochondrial disorders, gastric reflux and other G-I problems are getting looked at much more closely.
Jessica Butler reported on the use of restraints and seclusion with kids in the schools, preaching to the choir here, but reminding all of us that we might have come a long way toward inclusion, understanding and acceptance - but we have a very long way to go!
Allen Kurtz reminded us not to worry about the words "science" and "evidence-based" practices, but rather worry about those who use such terminology to promote their own self-interests. When new evidence is presented, those who are "stuck" in their own ideology often can't change their theories to fit the evidence. Instead they tend to dismiss what is happening before them. It's time for a paradigm shift with regard to those who type to communicate.
Many individuals gave presentations during the breakout sessions, telling their individual stories. It's impossible to attend all of these sessions, and just as impossible to adequately tell their stories here. But I think it's safe to say in summary that people on the autism spectrum are taking charge of their own lives, and changing the minds and hearts of those around them. There is a unity among all of them (and those of us who love and support them) that has the power to change the world.
Sure wish you could have been there to experience it first-hand. Maybe next fall in Milwaukee!
What sets this particular group apart from the rest is that it's run by and for people with autism, with a strong focus on all that is good and positive about being somewhere on the autism spectrum. I have been attending their conferences for several years now and have never been disappointed in any way.
Rather than go on for far longer than anyone would want to read, I will try to summarize, and of course that means I am running the risk of missing something important. My best advice: visit the web site; make plans to attend the next conference, October 15 and 16, 2010 in Milwaukee, Wisconsin. (Practically in my backyard - can't wait!)
Three very strong audio-visual presentations included (1) "The Power of Words" - a stirring reminder that how we talk about people, ourselves and others, means a LOT. Mayer Shevin wrote the original ("The Language of Us and Them"), and Judy Endow put together this powerful PowerPoint presentation, with music composed and played by her son Daniel. (2) An impressive and amusing travel documentary in the works featuring two long-time FC users, Larry Bissonnette and Tracy Thresher, who recently traveled with a camera crew to such far-away places as Sri Lanka, Japan and Finland. Both of these amazing men have been typing for a long time now, currently needing little or no physical support - and both are starting to talk by reading what they have typed. It's amazing! (3) Another documentary in progress, the joint project of Rob Rooy and DJ Savarese. The segment we viewed showed a Readers Theater presentation, written and directed by DJ, telling his life story, and put on by his friends and peers at Grinnell High School in Iowa. That young man has talent, and quite a story to tell!
Exciting news from the research field includes a study from MIT showing the high (but often hidden) levels of stress and anxiety that people with autism often experience. Matt Goodwin shared a new way to monitor these varying states of arousal using just a simple wristband to transmit the information. The costs are still far out of reach, but the potential is there for us to have a much better understanding of what might be going on inside.
Along similar lines, Dr. Margaret Baumann talked about exciting new developments at Massachusetts General Hospital, where she has been a pediatric neurologist working with people on the ASD spectrum so long that most of her patients are now adults. There's a large grant now available to improve medical services for these adults, along with a new understanding that many of the behaviors we associate with autism just might have a medical origin. Such issues as mitochondrial disorders, gastric reflux and other G-I problems are getting looked at much more closely.
Jessica Butler reported on the use of restraints and seclusion with kids in the schools, preaching to the choir here, but reminding all of us that we might have come a long way toward inclusion, understanding and acceptance - but we have a very long way to go!
Allen Kurtz reminded us not to worry about the words "science" and "evidence-based" practices, but rather worry about those who use such terminology to promote their own self-interests. When new evidence is presented, those who are "stuck" in their own ideology often can't change their theories to fit the evidence. Instead they tend to dismiss what is happening before them. It's time for a paradigm shift with regard to those who type to communicate.
Many individuals gave presentations during the breakout sessions, telling their individual stories. It's impossible to attend all of these sessions, and just as impossible to adequately tell their stories here. But I think it's safe to say in summary that people on the autism spectrum are taking charge of their own lives, and changing the minds and hearts of those around them. There is a unity among all of them (and those of us who love and support them) that has the power to change the world.
Sure wish you could have been there to experience it first-hand. Maybe next fall in Milwaukee!
Friday, September 4, 2009
Babies are SO smart!
Don't you love it when some important person comes out with a book or theory that says just what you've been thinking for a long time (or maybe even talking about, but no one seemed to be listening)?
Recently I have heard two different discussions on Public Radio about the surprising intelligence of babies. It isn't just me and it isn't just grandmas everywhere - Babies really ARE getting smarter! Why didn't they listen to us?
I have also been reading about the relatively new idea of neuroplasticity. (See: "The Brain that Changes Itself" by Norman Doidge). It isn't just babies - we all have a lot more ability to learn and change than we've ever been given credit for.
I won't bore you with stories about my amazingly smart grandkids and all the cute, clever things they say and do. Suffice it to say, they amaze all of us on a regular basis - and we love it!
But what does this mean to all of us? For one thing, it underscores the importance of early stimulation and ongoing challenge to further intellectual growth and development. It also means schools that prepare teachers for our classrooms have to be on top of all ongoing research so that teachers are up to speed when they enter the classroom, and not simply doing things the old way - or the way they were taught.
It means we can never truly measure a child's intelligence, should never, ever give up on a person's potential, and should do away completely with the long-standing practice of labeling a child in order to provide some extra services in our public school systems.
Thinking about the many kids I have known in special education programs, and especially those who never quite qualified for such programs (it is embarrassing to say we considered them not "educable") and putting the reality of their early lives up against the early experiences of, for instance, my own grandkids, we have done these kids with "special needs" a terrible injustice. Because we vastly underestimated their intelligence and were stuck in our old ways of thinking about the brain, we did all the wrong things. In some cases, we removed those who were the most severely impacted by a disabling condition such as autism or Down syndrome from their homes and communities, placing them in sterile institutions where their basic needs were met, but not much of anything else was provided - during those critical early years, and possibly even for the rest of their lives!
Or maybe we told their parents to take them home and love them. Don't have unrealistic expectations for them, because they might never talk, walk, read, write, ride a bike or whatever. Hoping for more, or allowing yourself to think there might be an intelligent person locked inside, would only lead to disappointment and frustration.
At more than one point in my teaching career, I was accused of building false hopes in parents of kids like this. But the truth is that our system is set up to build false despair. We don't give the kids or their families enough credit for what might be possible. Sure it takes love - lots of it - and of course patience. (How often have I heard "You must have so much patience to work with kids like that!")?
But unless we combine that with sincere belief in a child's potential to learn - if we just find the right way to "teach" - we are failing that child and their family.
All the exciting new research says babies are soaking up information all the time, and if something tragic happens to damage a particular area of the brain there are many, many ways around that impasse - and the brain will do all it can to find one of those ways. We can't ignore this. It's a huge paradigm shift and means so much for all kids, but especially those who carry labels that might indicate learning challenges.
Recently I have heard two different discussions on Public Radio about the surprising intelligence of babies. It isn't just me and it isn't just grandmas everywhere - Babies really ARE getting smarter! Why didn't they listen to us?
I have also been reading about the relatively new idea of neuroplasticity. (See: "The Brain that Changes Itself" by Norman Doidge). It isn't just babies - we all have a lot more ability to learn and change than we've ever been given credit for.
I won't bore you with stories about my amazingly smart grandkids and all the cute, clever things they say and do. Suffice it to say, they amaze all of us on a regular basis - and we love it!
But what does this mean to all of us? For one thing, it underscores the importance of early stimulation and ongoing challenge to further intellectual growth and development. It also means schools that prepare teachers for our classrooms have to be on top of all ongoing research so that teachers are up to speed when they enter the classroom, and not simply doing things the old way - or the way they were taught.
It means we can never truly measure a child's intelligence, should never, ever give up on a person's potential, and should do away completely with the long-standing practice of labeling a child in order to provide some extra services in our public school systems.
Thinking about the many kids I have known in special education programs, and especially those who never quite qualified for such programs (it is embarrassing to say we considered them not "educable") and putting the reality of their early lives up against the early experiences of, for instance, my own grandkids, we have done these kids with "special needs" a terrible injustice. Because we vastly underestimated their intelligence and were stuck in our old ways of thinking about the brain, we did all the wrong things. In some cases, we removed those who were the most severely impacted by a disabling condition such as autism or Down syndrome from their homes and communities, placing them in sterile institutions where their basic needs were met, but not much of anything else was provided - during those critical early years, and possibly even for the rest of their lives!
Or maybe we told their parents to take them home and love them. Don't have unrealistic expectations for them, because they might never talk, walk, read, write, ride a bike or whatever. Hoping for more, or allowing yourself to think there might be an intelligent person locked inside, would only lead to disappointment and frustration.
At more than one point in my teaching career, I was accused of building false hopes in parents of kids like this. But the truth is that our system is set up to build false despair. We don't give the kids or their families enough credit for what might be possible. Sure it takes love - lots of it - and of course patience. (How often have I heard "You must have so much patience to work with kids like that!")?
But unless we combine that with sincere belief in a child's potential to learn - if we just find the right way to "teach" - we are failing that child and their family.
All the exciting new research says babies are soaking up information all the time, and if something tragic happens to damage a particular area of the brain there are many, many ways around that impasse - and the brain will do all it can to find one of those ways. We can't ignore this. It's a huge paradigm shift and means so much for all kids, but especially those who carry labels that might indicate learning challenges.
Wednesday, August 12, 2009
Excitement in/on the air
It has happened again. ABC has featured the story of Carly Fleischmann for the second time now, and she has also appeared on Larry King Live. Carly is a young girl from Toronto who types to communicate. The very positive reaction from viewers certainly warms my heart. But of course I also have to restrain myself from shouting out something like, "Where have you people been for the last 20 years?" or a version of "See, I told you so!"
Carly's communication hasn't come easily. According to the script, she is completely nonverbal and has an extremely hard time controlling her body - clearly shown in footage of her early years, as well as more recent scenes from her everyday life.
It would also appear that the methods used with Carly were different than what I tend to do. Once it was recognized that Carly could type, she was "made" to type words in order to get what she wanted. There is also a reference to her finger hovering over the keyboard sometimes for "hours" before actually typing a letter. My approach is much more gentle and supportive. If a child isn't ready/able to type on their own, I provide both physical and emotional support immediately - and lots of it. I must accept the reality that this might help explain why the young people I type with so seldom move on to typing completely independently, as Carly is shown to be doing.
But the road to independence is a complicated thing, and not everyone is in agreement as to its importance. Obviously, it helps immensely toward acceptance of the validity of the typed message if no one is actually touching the person while they type. I choose to defer to the wishes of the individual doing the typing - if they are truly interested in typing on their own, then let's go for it. If they express to me that they still need my support to get out their thoughts and feelings, well, then that's what we do. For the most part, I believe a person will become independent much more quickly if they are in a situation where the people around them - the family, school, and community - are totally supportive and eager to hear what they have to say. It doesn't work nearly as well (or at all, maybe) when one is surrounded by critics and skeptics. Who can blame them?!?
Meanwhile, I wait once again, hoping that this new excitement over a girl in Canada, who is suddenly able to express herself on the keyboard and tell the world what it's like to have autism and be unable to speak, will spill over the border just enough to raise awareness and interest. The kids I work with have a lot to say too, and would love to have a new audience. They are no doubt tired of preaching to the choir - that would be their parents and I, who have listened over and over again to their pleas for understanding.
Carly's communication hasn't come easily. According to the script, she is completely nonverbal and has an extremely hard time controlling her body - clearly shown in footage of her early years, as well as more recent scenes from her everyday life.
It would also appear that the methods used with Carly were different than what I tend to do. Once it was recognized that Carly could type, she was "made" to type words in order to get what she wanted. There is also a reference to her finger hovering over the keyboard sometimes for "hours" before actually typing a letter. My approach is much more gentle and supportive. If a child isn't ready/able to type on their own, I provide both physical and emotional support immediately - and lots of it. I must accept the reality that this might help explain why the young people I type with so seldom move on to typing completely independently, as Carly is shown to be doing.
But the road to independence is a complicated thing, and not everyone is in agreement as to its importance. Obviously, it helps immensely toward acceptance of the validity of the typed message if no one is actually touching the person while they type. I choose to defer to the wishes of the individual doing the typing - if they are truly interested in typing on their own, then let's go for it. If they express to me that they still need my support to get out their thoughts and feelings, well, then that's what we do. For the most part, I believe a person will become independent much more quickly if they are in a situation where the people around them - the family, school, and community - are totally supportive and eager to hear what they have to say. It doesn't work nearly as well (or at all, maybe) when one is surrounded by critics and skeptics. Who can blame them?!?
Meanwhile, I wait once again, hoping that this new excitement over a girl in Canada, who is suddenly able to express herself on the keyboard and tell the world what it's like to have autism and be unable to speak, will spill over the border just enough to raise awareness and interest. The kids I work with have a lot to say too, and would love to have a new audience. They are no doubt tired of preaching to the choir - that would be their parents and I, who have listened over and over again to their pleas for understanding.
Sunday, July 19, 2009
Learning about Autism
So, what has Grandma learned about autism anyhow? Where do I start? I have already written a little about issues related to behavior and will no doubt write more on that topic in the future, but for now let's just say that at first I thought it was all about behavior and now, some 30 years later, I am quite sure that behavior is simply the visible sign that something is amiss with the way these kids fit into the world around them.
It's not as simple as that. Sorry, but absolutely nothing connected to autism is simple. There is no simple cause, no simple cure, no simple definition, no simple anything. There is also virtually no agreement on anything, with one possible exception. I think it is possible we have come to agreement (and I say this tentatively because I already feel the possible onslaught of those who will disagree with me - that's just the way it is) that early intervention can and does make a difference.
Parents are no longer advised to put their young, newly-diagnosed child into an institution. Hopefully, they are also not advised to "accept him as he is, and don't expect too much." Maybe I could also dare to hope that parents are no longer blamed for their child's condition. I came into this field in the days when "refrigerator mothers" were actually told they had somehow failed to bond with their child, failed to love him/her enough, so that in addition to all the disruption they had already endured in their lives, they could now add a heavy dose of self-blame - the chaos they were experiencing in their family was somehow their own fault! In the dark days of Bruno Bettleheim, what was recommended next was that the child be removed from the parents, so that no further damage would be done.
We might agree now that kids with autism can be helped, but as soon as we say that the "fight" is on. Some will suggest dietary changes, others prefer medication; some want 40 or more hours of home therapy, others want early childhood programs that promote inclusion and sociability. Some say focus on sensory integration, some want speech therapy, some want behavioral programming, some recommend play therapy. What are loving, concerned parents to do? How do they choose? What if they invest far too much time, energy and money in a program and nothing changes? What about the guilt then? Is it back to being their fault for choosing wrong? And what about the rest of the family? If both parents need to work to meet expenses, how can they possibly devote all the needed time to the interventions that might help their child?
As professionals, do we set parents up for almost certain failure when we suggest that with the proper intervention, their child has a good chance for a relatively successful life? What does that mean, anyhow? Will they be able to live independently? Drive? Get a job? Marry? If not, how will they be cared for in the long term? How much of an investment is needed in the early years for the best possible chance of a positive outcome somewhere in the future?
Retreating now to my very personal views on this, I think having a positive outlook for the future is the single most important thing any of us can do when dealing with a young child who has autism. Beyond that, each family can only do what is comfortable for them. Difficult choices will have to be made, and it probably is wise to accept from the very beginning that they will have to advocate for what is best for that child every step of the way.
Some of the positives:
---- Better understanding of autism among most professionals;
---- Earlier and more accurate diagnosis;
---- General acceptance that early intervention DOES make a difference;
---- A wider array of possible interventions available;
---- (Generally) more appropriate school programs available;
---- Some of these services are funded; it doesn't all have to come out of the parents' pockets;
---- Many, many more ways to find support. Local groups, Internet resources and listservs. When I first became interested, there was nothing for the parents.
I will resist the temptation to make a similar list of negatives, and instead state that what I saw happening in the public schools as I came closer to retirement could best be described as a train wreck: We had learned much; we were starting to "get it" and could maybe begin to develop programs that would meet the needs of the increasing numbers of kids with autism who were entering our schools. But at the same time, budgets were being cut everywhere. Parents who were strong advocates still had a lot of power and the laws were on their side. They could, and did, fight for the programs their kids needed and deserved. But the ones who were aware of what was happening soon came to see that if they demanded a Cadillac program for their child with special needs, something else had to give. Programming for their other children, or the kids down the block, would begin to suffer. There was simply not enough money available in most school districts to do what we knew needed to be done. In most districts around here, the collision has already happened, and it's the kids who have suffered. It's hard for me to talk about quality programming in the schools - for kids with or without disabilities - without mentioning that it just isn't going to happen unless drastic changes take place in the way we fund public education.
Thus it really falls back on the family to seek out and implement whatever interventions seem most likely to help their child with his/her unique needs. The good news that these kids can be helped should go a long way to offset the stress that comes with trying to sort out the vast amount of information that is now out there. I recommend following your instincts and choosing a path that fits with the family structure that already exists. Try something that "feels right" and discard anything that doesn't. But never, ever give up on your child. They need you to believe in their potential!
It's not as simple as that. Sorry, but absolutely nothing connected to autism is simple. There is no simple cause, no simple cure, no simple definition, no simple anything. There is also virtually no agreement on anything, with one possible exception. I think it is possible we have come to agreement (and I say this tentatively because I already feel the possible onslaught of those who will disagree with me - that's just the way it is) that early intervention can and does make a difference.
Parents are no longer advised to put their young, newly-diagnosed child into an institution. Hopefully, they are also not advised to "accept him as he is, and don't expect too much." Maybe I could also dare to hope that parents are no longer blamed for their child's condition. I came into this field in the days when "refrigerator mothers" were actually told they had somehow failed to bond with their child, failed to love him/her enough, so that in addition to all the disruption they had already endured in their lives, they could now add a heavy dose of self-blame - the chaos they were experiencing in their family was somehow their own fault! In the dark days of Bruno Bettleheim, what was recommended next was that the child be removed from the parents, so that no further damage would be done.
We might agree now that kids with autism can be helped, but as soon as we say that the "fight" is on. Some will suggest dietary changes, others prefer medication; some want 40 or more hours of home therapy, others want early childhood programs that promote inclusion and sociability. Some say focus on sensory integration, some want speech therapy, some want behavioral programming, some recommend play therapy. What are loving, concerned parents to do? How do they choose? What if they invest far too much time, energy and money in a program and nothing changes? What about the guilt then? Is it back to being their fault for choosing wrong? And what about the rest of the family? If both parents need to work to meet expenses, how can they possibly devote all the needed time to the interventions that might help their child?
As professionals, do we set parents up for almost certain failure when we suggest that with the proper intervention, their child has a good chance for a relatively successful life? What does that mean, anyhow? Will they be able to live independently? Drive? Get a job? Marry? If not, how will they be cared for in the long term? How much of an investment is needed in the early years for the best possible chance of a positive outcome somewhere in the future?
Retreating now to my very personal views on this, I think having a positive outlook for the future is the single most important thing any of us can do when dealing with a young child who has autism. Beyond that, each family can only do what is comfortable for them. Difficult choices will have to be made, and it probably is wise to accept from the very beginning that they will have to advocate for what is best for that child every step of the way.
Some of the positives:
---- Better understanding of autism among most professionals;
---- Earlier and more accurate diagnosis;
---- General acceptance that early intervention DOES make a difference;
---- A wider array of possible interventions available;
---- (Generally) more appropriate school programs available;
---- Some of these services are funded; it doesn't all have to come out of the parents' pockets;
---- Many, many more ways to find support. Local groups, Internet resources and listservs. When I first became interested, there was nothing for the parents.
I will resist the temptation to make a similar list of negatives, and instead state that what I saw happening in the public schools as I came closer to retirement could best be described as a train wreck: We had learned much; we were starting to "get it" and could maybe begin to develop programs that would meet the needs of the increasing numbers of kids with autism who were entering our schools. But at the same time, budgets were being cut everywhere. Parents who were strong advocates still had a lot of power and the laws were on their side. They could, and did, fight for the programs their kids needed and deserved. But the ones who were aware of what was happening soon came to see that if they demanded a Cadillac program for their child with special needs, something else had to give. Programming for their other children, or the kids down the block, would begin to suffer. There was simply not enough money available in most school districts to do what we knew needed to be done. In most districts around here, the collision has already happened, and it's the kids who have suffered. It's hard for me to talk about quality programming in the schools - for kids with or without disabilities - without mentioning that it just isn't going to happen unless drastic changes take place in the way we fund public education.
Thus it really falls back on the family to seek out and implement whatever interventions seem most likely to help their child with his/her unique needs. The good news that these kids can be helped should go a long way to offset the stress that comes with trying to sort out the vast amount of information that is now out there. I recommend following your instincts and choosing a path that fits with the family structure that already exists. Try something that "feels right" and discard anything that doesn't. But never, ever give up on your child. They need you to believe in their potential!
Sunday, July 12, 2009
Facilitated Communication Basics
This will be a quick, basic introduction to Facilitated Communication, from my personal perspective. I sure hope anyone with something to add will do so, and if you have questions or want further information, please let me know.
FC, as we'll call it from here on, was used very sporadically and generally without much fanfare until Rosemary Crossley started using it with children in Australia. Working in an institution for those with very severe disabilities, her first successful experiences were with young children with severe cerebral palsy (CP). One of those very special kids, Anne McDonald, is now an adult and actually lives with Rosie and her partner, Chris Borthwick. Anne, once judged to be profoundly mentally retarded, has gone on to work toward advanced degrees using typing as her means of communication.
The method involves a combination of (1) emotional support and encouragement, (2) physical support as needed, and (3) access to a letter board, choice board, or keyboard. Independent typing is of course the ultimate goal, but many people have such significant motor impairments that they may continue to need full physical support in order to express their thoughts. In general, it is recommended to begin fading the physical support early in the process, as well as having the FC user become comfortable using the method with several different facilitators. With support and access, along with lots of practice, many individuals who are unable to use spoken language in a meaningful way find an effective means of communication. FC can be used along with other interventions, is very low-cost, and opens up the possibility of unlimited communication.
News of the method was brought to the U.S. in the early 1990's by Dr. Doug Biklen of Syracuse University, amid much media excitement; but it wasn't long before the controversy set in. Making a long story as short as I can, the problem seems to be the difficulty in accepting that individuals who appear to be so severely impaired in so many ways could possibly be saying what is being typed. It hasn't helped at all that trying to set up some sort of double blind test situation to "prove" the validity of the method hasn't worked well at all.
But more and more stories are being told. More and more individuals are becoming independent in their typing. And, some positive studies have been published. I will include a few references for further reading and would love to have questions or comments posted here to get a discussion going.
To learn more about FC: http://www.inclusioninstitutes.org
Check out this awesome video, available at major libraries across the U.S.:
"Autism is a World" - the story of Sue Rubin
A chapter from my book (SEE US SMART!): http://www.robbiedeanpress.com
FC, as we'll call it from here on, was used very sporadically and generally without much fanfare until Rosemary Crossley started using it with children in Australia. Working in an institution for those with very severe disabilities, her first successful experiences were with young children with severe cerebral palsy (CP). One of those very special kids, Anne McDonald, is now an adult and actually lives with Rosie and her partner, Chris Borthwick. Anne, once judged to be profoundly mentally retarded, has gone on to work toward advanced degrees using typing as her means of communication.
The method involves a combination of (1) emotional support and encouragement, (2) physical support as needed, and (3) access to a letter board, choice board, or keyboard. Independent typing is of course the ultimate goal, but many people have such significant motor impairments that they may continue to need full physical support in order to express their thoughts. In general, it is recommended to begin fading the physical support early in the process, as well as having the FC user become comfortable using the method with several different facilitators. With support and access, along with lots of practice, many individuals who are unable to use spoken language in a meaningful way find an effective means of communication. FC can be used along with other interventions, is very low-cost, and opens up the possibility of unlimited communication.
News of the method was brought to the U.S. in the early 1990's by Dr. Doug Biklen of Syracuse University, amid much media excitement; but it wasn't long before the controversy set in. Making a long story as short as I can, the problem seems to be the difficulty in accepting that individuals who appear to be so severely impaired in so many ways could possibly be saying what is being typed. It hasn't helped at all that trying to set up some sort of double blind test situation to "prove" the validity of the method hasn't worked well at all.
But more and more stories are being told. More and more individuals are becoming independent in their typing. And, some positive studies have been published. I will include a few references for further reading and would love to have questions or comments posted here to get a discussion going.
To learn more about FC: http://www.inclusioninstitutes.org
Check out this awesome video, available at major libraries across the U.S.:
"Autism is a World" - the story of Sue Rubin
A chapter from my book (SEE US SMART!): http://www.robbiedeanpress.com
Saturday, July 11, 2009
Family vacations
Again, off the usual track, sort of . . .
We had a great time on our annual family vacation, but Grandma just keeps learning and learning. Consider, for example:
(1) When you are part of a big group living together for any length of time, it's wise to keep in mind that you might think you have found the best way to do something (like wash the dishes, or bait a hook, or serve food to a crowd, or whatever) but it's not wise to require that others do things your way. In fact, don't even make suggestions unless asked. Keep your mouth shut and your thoughts to yourself.
(2) You might have raised all your kids in the same household, and they might even all have the same two parents, but that doesn't mean they think alike. They might have very different ideas about parenting (just for example), or religion, or politics, or whatever. The wise grandma avoids stress by staying clear of these topics, and letting everyone do things their own way.
(3) If someone asks if there's some way they can help, be prepared with an assignment for them. DON'T criticize the way they do things and DON'T get upset if no one asks. It's just not worth it!
(4) Never miss an opportunity to listen to your kids or grandkids tell you about their lives. Meals can be simple, dishes can wait; nothing is more important than quality time with the people who mean the most to you.
(5) Watch the interactions between kids. We had quite a group this time - Ten kids between the ages of two and 19, not all of them blood relatives, and one who didn't really know the others at all before this trip. Kids are amazingly flexible and open to new experiences. I particularly enjoyed watching the older ones when they were having fun with the younger ones - being patient, doing some gentle teasing, finding pleasure in making the younger ones happy. Kids are great!
(6) It's perfectly OK, and even advisable, for grandparents to take an afternoon nap, or go to bed early. Vacations can be exhausting!
(7) Laugh a lot and be grateful for the moment. Try not to worry about all that could go wrong (I know, this is not easy! Grandmas are SUPPOSED to worry!) Enjoy!!!
We had a great time on our annual family vacation, but Grandma just keeps learning and learning. Consider, for example:
(1) When you are part of a big group living together for any length of time, it's wise to keep in mind that you might think you have found the best way to do something (like wash the dishes, or bait a hook, or serve food to a crowd, or whatever) but it's not wise to require that others do things your way. In fact, don't even make suggestions unless asked. Keep your mouth shut and your thoughts to yourself.
(2) You might have raised all your kids in the same household, and they might even all have the same two parents, but that doesn't mean they think alike. They might have very different ideas about parenting (just for example), or religion, or politics, or whatever. The wise grandma avoids stress by staying clear of these topics, and letting everyone do things their own way.
(3) If someone asks if there's some way they can help, be prepared with an assignment for them. DON'T criticize the way they do things and DON'T get upset if no one asks. It's just not worth it!
(4) Never miss an opportunity to listen to your kids or grandkids tell you about their lives. Meals can be simple, dishes can wait; nothing is more important than quality time with the people who mean the most to you.
(5) Watch the interactions between kids. We had quite a group this time - Ten kids between the ages of two and 19, not all of them blood relatives, and one who didn't really know the others at all before this trip. Kids are amazingly flexible and open to new experiences. I particularly enjoyed watching the older ones when they were having fun with the younger ones - being patient, doing some gentle teasing, finding pleasure in making the younger ones happy. Kids are great!
(6) It's perfectly OK, and even advisable, for grandparents to take an afternoon nap, or go to bed early. Vacations can be exhausting!
(7) Laugh a lot and be grateful for the moment. Try not to worry about all that could go wrong (I know, this is not easy! Grandmas are SUPPOSED to worry!) Enjoy!!!
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