This is going to be my shortest blog post ever - I promise! And my hope is that because it will take so little time to read, maybe you will find the time (and inclination) to check out a couple very exciting web sites.
I just read that it's Autism Positivity Day - which automatically makes it my very favorite day of the whole Autism Awareness/Acceptance month! I am full of positivity today and I hope you are as well.
I am going way out on a limb here, ready to share with you my brand new answer to the question people invariably ask when they hear I am involved with autism.
Q: "So, why are so many more people being diagnosed with autism?"
A: "Maybe it's because we aren't really listening yet!"
Leaving aside the common discussion about whether there is really an increase in the number of folks on the autism spectrum, or perhaps we are just getting better at recognizing the condition, the truth is that there really are lots more people who carry the autism label these days.
And, what if . . . . ?
What if they all have something to teach us and we haven't been paying attention?
That's it - for now at least. From here, I invite you to check out the following:
Paula Kluth's ideas on inclusion and doing it right.
Temple Grandin's positive take on autism
Wretches and Jabberers - the movie
Some pretty amazing writings from friends who type to communicate
Words of wisdom from my good friend Aaron
Suzy Miller's very positive take on autism
Seeing it as AWETIZM!
Do we have YOUR attention? I'd love to hear from you.
Monday, April 30, 2012
Saturday, March 24, 2012
Deciding What to Teach - Part Two
Let's turn the focus here on those who fall somewhere on the autism spectrum, either with a medical or educational diagnosis, or the more loosely defined characteristics that are autistic-like in nature.
I have often mentioned the importance of communication. I simply cannot imagine a more important area of emphasis for teaching/learning. Even for kids who are able to speak, maybe even write or type on their own, it's critical that they learn to use these tools to express themselves in a meaningful way. For those who lack the ability to speak, write, type, or even point to make choices the need becomes even more essential.
For me personally, and for so many of the young people I know, the use of supported typing, or Facilitated Communication, has been by far the most exciting and successful method of helping someone with limited communication ability. But I am open to anything - gestures, sign language, the wide array of alternate/augmentative devices now available, pictures, pointing, nodding ---- whatever works. What matters most is that we recognize and encourage any and all attempts on the part of that child (or adult) to let us know what they are thinking. And then we must respect what they are telling us - not dismiss it as inconsequential, or perhaps not actually coming from them.
I have also briefly mentioned the importance of learning to use free time in a way that is meaningful. Some kids actually need help in learning to play; so we teach play skills. Some need to learn what to do during recess, or how to take a break on the job. Many would benefit if we the teachers would encourage them - the learners - to make use of their various talents and interests in ways that improve the quality of their lives and perhaps even contribute to the quality of the lives of others. Far too often, we have determined that a particular interest was an "obsession" to be phased out rather than developed. How many artists, poets, musicians, architects, designers, or other creative geniuses have we stifled in this way?
In addition, a child who can find acceptable ways to entertain themselves makes for a happier family. A child who can remain seated and quiet while coloring, scribbling, or paging through a magazine, is more welcome in a regular class setting. An adult who has hobbies and interests is a much happier person, leading a more satisfying life.
Teaching a person to use computers and other technology is a life skill that will serve them well in almost any environment. Put kids in front of the computer as young as possible and help them learn to use a mouse, click and drag, surf the net, google what interests them, play games, send an email message --- there is no limit here to what can be taught and learned. For those who become "stuck" on certain activities, maybe childish ones we'd like to see them outgrow, gently move them forward and introduce new and different options. (Apology here to those students who tried so hard to convince me of the value of computers in those early years. Sorry, I was a slow learner. I am now totally on your side!)
Putting all of this together, what I really see as most valuable to all concerned is to make use of whatever works to help an individual let us know what they are thinking, what they need, and what we can do to make their environment more user-friendly for them. This includes helping them learn to recognize - and then express - what they are thinking and feeling; helping them make meaningful choices in every possible situation (what they want to eat, what they want to do, what they want to learn about, etc.); helping them know when their sensory systems are approaching overload - or shutdown - and what can be done to make things better; helping them to request a break before a problem develops, and on and on. They need our help and support every step of the way in this process. People with autism are generally not in touch with what is going on within, and people who have gotten used to having others make choices for them have trouble even knowing what they themselves really like or dislike.
In a recent typing session with my friend Roy, I asked for his input on this topic. His advice to all of us follows, as typed:
I can't say it any better than that. I can't imagine anything more important.
I have often mentioned the importance of communication. I simply cannot imagine a more important area of emphasis for teaching/learning. Even for kids who are able to speak, maybe even write or type on their own, it's critical that they learn to use these tools to express themselves in a meaningful way. For those who lack the ability to speak, write, type, or even point to make choices the need becomes even more essential.
For me personally, and for so many of the young people I know, the use of supported typing, or Facilitated Communication, has been by far the most exciting and successful method of helping someone with limited communication ability. But I am open to anything - gestures, sign language, the wide array of alternate/augmentative devices now available, pictures, pointing, nodding ---- whatever works. What matters most is that we recognize and encourage any and all attempts on the part of that child (or adult) to let us know what they are thinking. And then we must respect what they are telling us - not dismiss it as inconsequential, or perhaps not actually coming from them.
I have also briefly mentioned the importance of learning to use free time in a way that is meaningful. Some kids actually need help in learning to play; so we teach play skills. Some need to learn what to do during recess, or how to take a break on the job. Many would benefit if we the teachers would encourage them - the learners - to make use of their various talents and interests in ways that improve the quality of their lives and perhaps even contribute to the quality of the lives of others. Far too often, we have determined that a particular interest was an "obsession" to be phased out rather than developed. How many artists, poets, musicians, architects, designers, or other creative geniuses have we stifled in this way?
In addition, a child who can find acceptable ways to entertain themselves makes for a happier family. A child who can remain seated and quiet while coloring, scribbling, or paging through a magazine, is more welcome in a regular class setting. An adult who has hobbies and interests is a much happier person, leading a more satisfying life.
Teaching a person to use computers and other technology is a life skill that will serve them well in almost any environment. Put kids in front of the computer as young as possible and help them learn to use a mouse, click and drag, surf the net, google what interests them, play games, send an email message --- there is no limit here to what can be taught and learned. For those who become "stuck" on certain activities, maybe childish ones we'd like to see them outgrow, gently move them forward and introduce new and different options. (Apology here to those students who tried so hard to convince me of the value of computers in those early years. Sorry, I was a slow learner. I am now totally on your side!)
Putting all of this together, what I really see as most valuable to all concerned is to make use of whatever works to help an individual let us know what they are thinking, what they need, and what we can do to make their environment more user-friendly for them. This includes helping them learn to recognize - and then express - what they are thinking and feeling; helping them make meaningful choices in every possible situation (what they want to eat, what they want to do, what they want to learn about, etc.); helping them know when their sensory systems are approaching overload - or shutdown - and what can be done to make things better; helping them to request a break before a problem develops, and on and on. They need our help and support every step of the way in this process. People with autism are generally not in touch with what is going on within, and people who have gotten used to having others make choices for them have trouble even knowing what they themselves really like or dislike.
In a recent typing session with my friend Roy, I asked for his input on this topic. His advice to all of us follows, as typed:
"Teach the other kids to accept the ones with autism. Teach the other teachers how to be more understanding. Teach everyone to be more joyful. Joy is really how we feel when people like us. Teach them to see us as the ones who try very hard to do what is right."
I can't say it any better than that. I can't imagine anything more important.
Monday, February 27, 2012
Deciding What to Teach - Part One
In my classroom experience with kids who had those awful labels (CDS, moderate/severe/profound MR, multiply handicapped, or whatever) there were always difficult choices to be made about how to spend our days. It goes without saying that these kids had many deficits - by definition that is why they were placed in that particular classroom. Most were served by a variety of other professionals within the school setting, and often another whole set of professionals outside that setting. Services such as physical therapy (PT), occupational therapy (OT), speech and language therapy (SLT) were common in school, and various medical or behavioral specialists would be working with the family when school was not in session. All such services were much needed and much appreciated. But all took up valuable time and energy. Everything these kids did was hard work for them, and of course keeping them healthy, strong and alert was a prime concern for all of us. We wanted to help in every way we could, and we wanted to make the best possible use of the time we had available.
Thank goodness for the IEP process. Sitting down with the parents - and all those wonderful professionals who worked with us - we could review progress at least annually and hash out our priorities for the coming year. I always encouraged the parents to be open and honest about what they wanted most from the school, and to give us any suggestions they might have about what we could/should be attempting to teach. This was before the age of standardized testing, and as long as the parents agreed with me that there was no need for formal testing or assigning grades, we could move forward in agreement with a highly individualized plan in place.
Without a doubt, the primary decision was how much emphasis to place on functional life skills, and how much to place on academic learning. Thinking back to one of my earliest classrooms, we had a variety of adaptive equipment so that kids with physical disabilities could be comfortably positioned in a variety of ways (with therapeutic value of one sort or another) throughout the school day. Rotating each one through the various equipment (not unlike a visit to Curves these days!) along with frequent bathroom visits and time for feeding and rest, there really wasn't a lot of time for other activities. We also had open access to a classroom that had been converted into a mock apartment, with laundry facilities, kitchen appliances, a bed we could practice making, even a sofa with a TV to watch.
Have I mentioned that I was part of a very hard-working committee that spent many long hours developing what we thought was a state-of-the-art curriculum for teaching life skills? We took this very seriously! In addition to skills that might help around the home, we taught community-related skills, social skills, pre-vocational skills and the like.
It wasn't "bad," but in retrospect I am quite sure we were not giving the kids quite enough credit. For example, we commonly worked on such tasks as sorting silverware or folding towels. With so many students having serious motor impairments, this could be quite a challenge. If we were hoping that some day they might live on their own (not likely for most) or maybe work in a restaurant or hotel where these skills might be useful, was the idea that ten or more years of "practice" might make them able to do this satisfactorily? Is it not possible that these skills might not even be needed in the next decade when they would be ready to go out into the world? What about the possibility that we were insulting their intelligence and/or missing valuable time when they could be learning something more important?
The parents I worked with covered a wide spectrum in their expectations. Most were very happy that the school was there to work with their child and gave us a wide berth in the choices we made, trusting our training and experience, our "expertise!" (SCARY!) Some were very specific in what they wanted us to work on in the time we spent with their child, but even they were usually realistic in their expectations and appreciative of our efforts.
And yet, by the time these students left the school system, I think all of us - teachers, therapists, and parents - would agree we hadn't really taught them much, and certainly not enough to be really ready to tackle the world with all its complexities.
When it came to those students on the autism spectrum, things were even more complex and confusing. I worked mostly with those who struggled with communication, so that was always a top priority for me. In the early days, however, my students would often be denied access to the various therapies because they (1) didn't talk (most speech/language therapists were used to working with articulation at the time) or (2) didn't cooperate. They didn't manifest the same type of motor problems as those with physical impairments, so physical therapy was seldom even considered. Always there was a strong emphasis on behavior - lots of time was spent analyzing various behavior patterns that were deemed unacceptable and in need of modification. Once we settled on a specific target behavior the task shifted to finding ways to encourage the child to change, using a combination of rewards and consequences (and yes, in those days, sometimes even punishment). Trouble was, the smartest among them could outsmart the professionals at every turn and a lot of time was spent trying to stay ahead of the game.
What I would change for sure in every single situation - and did, once we started learning more about the true cognitive level of so many of our students - is the level of interaction and instruction. Rather than a room decorated with characters from Sesame Street or Disney movies (even though so many of the kids really did love these characters!) we switched to world maps, pictures of the Presidents, and covers from current news magazines. We had always read to the students regularly, but switched to age-appropriate fiction and non-fiction spanning a wide array of topics that might be both interesting and educational.
For those with autism, it began to seem more important - and respectful - to help the kids learn ways to recognize when they might need a break and how to best do that in the school setting. Learning to occupy themselves during free time, playing alone or with others, expanding their interests -- all seem valuable areas for teaching/learning. As we learned more about the difficulties these kids had dealing with sensory systems that were out of whack most of the time, we realized that helping them find ways to self-regulate was a much more critical life skill than any of the behavior management techniques we had been using.
In general, we were operating from a deficit model. We identified areas where a particular student was unable to perform some task that sooner or later would be needed to get by in life. But the reality is that many of these individuals would never be able to do many of the things we considered essential; they would always need some level of support. Sadly, our focus was so intense that we missed the opportunity to identify and encourage interests and celebrate abilities.
By the time I retired, I had come a long way in my understanding - but not nearly far enough. I won't have another chance to do it differently, but maybe I can help other teachers (or parents) find a way to make better choices.
Thank goodness for the IEP process. Sitting down with the parents - and all those wonderful professionals who worked with us - we could review progress at least annually and hash out our priorities for the coming year. I always encouraged the parents to be open and honest about what they wanted most from the school, and to give us any suggestions they might have about what we could/should be attempting to teach. This was before the age of standardized testing, and as long as the parents agreed with me that there was no need for formal testing or assigning grades, we could move forward in agreement with a highly individualized plan in place.
Without a doubt, the primary decision was how much emphasis to place on functional life skills, and how much to place on academic learning. Thinking back to one of my earliest classrooms, we had a variety of adaptive equipment so that kids with physical disabilities could be comfortably positioned in a variety of ways (with therapeutic value of one sort or another) throughout the school day. Rotating each one through the various equipment (not unlike a visit to Curves these days!) along with frequent bathroom visits and time for feeding and rest, there really wasn't a lot of time for other activities. We also had open access to a classroom that had been converted into a mock apartment, with laundry facilities, kitchen appliances, a bed we could practice making, even a sofa with a TV to watch.
Have I mentioned that I was part of a very hard-working committee that spent many long hours developing what we thought was a state-of-the-art curriculum for teaching life skills? We took this very seriously! In addition to skills that might help around the home, we taught community-related skills, social skills, pre-vocational skills and the like.
It wasn't "bad," but in retrospect I am quite sure we were not giving the kids quite enough credit. For example, we commonly worked on such tasks as sorting silverware or folding towels. With so many students having serious motor impairments, this could be quite a challenge. If we were hoping that some day they might live on their own (not likely for most) or maybe work in a restaurant or hotel where these skills might be useful, was the idea that ten or more years of "practice" might make them able to do this satisfactorily? Is it not possible that these skills might not even be needed in the next decade when they would be ready to go out into the world? What about the possibility that we were insulting their intelligence and/or missing valuable time when they could be learning something more important?
The parents I worked with covered a wide spectrum in their expectations. Most were very happy that the school was there to work with their child and gave us a wide berth in the choices we made, trusting our training and experience, our "expertise!" (SCARY!) Some were very specific in what they wanted us to work on in the time we spent with their child, but even they were usually realistic in their expectations and appreciative of our efforts.
And yet, by the time these students left the school system, I think all of us - teachers, therapists, and parents - would agree we hadn't really taught them much, and certainly not enough to be really ready to tackle the world with all its complexities.
When it came to those students on the autism spectrum, things were even more complex and confusing. I worked mostly with those who struggled with communication, so that was always a top priority for me. In the early days, however, my students would often be denied access to the various therapies because they (1) didn't talk (most speech/language therapists were used to working with articulation at the time) or (2) didn't cooperate. They didn't manifest the same type of motor problems as those with physical impairments, so physical therapy was seldom even considered. Always there was a strong emphasis on behavior - lots of time was spent analyzing various behavior patterns that were deemed unacceptable and in need of modification. Once we settled on a specific target behavior the task shifted to finding ways to encourage the child to change, using a combination of rewards and consequences (and yes, in those days, sometimes even punishment). Trouble was, the smartest among them could outsmart the professionals at every turn and a lot of time was spent trying to stay ahead of the game.
What I would change for sure in every single situation - and did, once we started learning more about the true cognitive level of so many of our students - is the level of interaction and instruction. Rather than a room decorated with characters from Sesame Street or Disney movies (even though so many of the kids really did love these characters!) we switched to world maps, pictures of the Presidents, and covers from current news magazines. We had always read to the students regularly, but switched to age-appropriate fiction and non-fiction spanning a wide array of topics that might be both interesting and educational.
For those with autism, it began to seem more important - and respectful - to help the kids learn ways to recognize when they might need a break and how to best do that in the school setting. Learning to occupy themselves during free time, playing alone or with others, expanding their interests -- all seem valuable areas for teaching/learning. As we learned more about the difficulties these kids had dealing with sensory systems that were out of whack most of the time, we realized that helping them find ways to self-regulate was a much more critical life skill than any of the behavior management techniques we had been using.
In general, we were operating from a deficit model. We identified areas where a particular student was unable to perform some task that sooner or later would be needed to get by in life. But the reality is that many of these individuals would never be able to do many of the things we considered essential; they would always need some level of support. Sadly, our focus was so intense that we missed the opportunity to identify and encourage interests and celebrate abilities.
By the time I retired, I had come a long way in my understanding - but not nearly far enough. I won't have another chance to do it differently, but maybe I can help other teachers (or parents) find a way to make better choices.
Wednesday, December 21, 2011
What to do in the Meantime
Suppose you have become interested in Facilitated Communication, and are considering trying it with someone you know and care about. You've read a story or two, watched a video, read a book, or maybe even met a person who uses this method to communicate.
You probably find yourself a little skeptical and very unsure of where to start - or even whether to do so. You have probably heard that training is required to become a facilitator and that may require a trip to Syracuse, NY or Whittier, CA - something that seems entirely out of the question. It is not likely anyone close by is offering such training, and even if they are it might be several months in the future. What to do in the meantime?
Let me suggest the following, keeping in mind that not all of these suggestions may be feasible in your particular situation. Feel free to adapt the ideas to fit your circumstances.
(1) Presume competence. This is not an original idea of mine. It is the unofficial motto of almost all the autism conferences I have attended over the past ten years or more. Dismiss all entrenched ideas that people with autism are cognitively impaired (mentally retarded). I give you permission to look for glimmers of intelligence and then believe them when you see them. Regardless of any professional evaluations or test scores, start to see the person as capable of learning. Based on my many years of experience, I can assure you that all of these people are learning all the time - with or without the assistance and support of teachers. Borrowing yet another common phrase, this is always the "least dangerous assumption" when we meet a new person who is unable to speak, or limited in their abilities to function or communicate.
(2) Watch carefully how you speak and what you say. This follows naturally from the presumption of competence. It follows, but that doesn't mean it happens automatically. This will require some self-reflection and the changing of some long-standing habits. It happens on all levels; we might as well admit it. We don't always remember to speak at an age-appropriate level when we are talking to folks with "differences." (Perfect example: I typed "disabilities" and then decided there was a much better word to use). I have been working on this personally for about 20 years now, and still need to remind myself. We don't always remember to include a non-speaking person in the conversation. We talk about them in their presence as if they were invisible. We talk to caregivers or parents rather than to the persons themselves. And what we have to say is not always pleasant for them to hear.
(3) Look for ways to let the person know you believe in them and want to know more about what they are thinking. Say those words, or anything like those words that feels comfortable to you and fits the situation. Try talking aloud about what you have read or seen about the amazing people who are typing to communicate and then add that it would be wonderful to know what the person you care about might have to say if/when they learn to type. "WOW! Sue Rubin's story is amazing. I can't wait to hear all YOU have to say!" "I just know you are full of great ideas, and probably lots of questions too. Some day we'll find a way to get them all out." Watching one of the videos available or reading aloud from one of the books - the ones that tell of the many success stories of those who have learned to type - can be very effective, in so many ways! Do this over and over again, if possible.
(4) Never miss a chance to give the person meaningful choices. We find that so many of these young people have had people making choices for them most of their lives, so that even teens and adults - when they start to communicate - aren't sure what THEY really like. This might apply to food preferences, what clothes to wear, learning or leisure activities, what color they want their room painted, or just about any aspect of their lives. You don't need to wait for them to start typing; use whatever means of interaction is already in place to give choices frequently throughout the course of an ordinary day. Involve them in the decision-making process at every possible opportunity.
(5) If it's not already established, work on a reliable way for the person to give a yes/no answer to questions. A nod, or thumbs up, pointing to a smiley face, or maybe giving a smile, can all mean "yes." The trick is to be sure the answer is reliable and meaningful. Lots of these folks seem to be programmed to please the adults around them (yes, even those whose actions might seem totally meant to drive us to frustration much of the time!). They really DO want to please us, and they tend to give answers they think we want to hear. We want to undo that, and help them get in touch with their own feelings and preferences. This might seem overly simple and for some who think their kids are already controlling the lives of all family members by their behavior, it might seem totally unnecessary as a point of discussion. Again, my experience is that most kids need our help to learn not only how to ask for what they need, but more basically how to identify what they need or want.
(6) Help other people who are significant in the person's life to make these same changes. If you are lucky, others will learn from your example. Or maybe you will have to do some teaching, gently prodding them and moving them along on the continuum toward complete acceptance of this person as someone who is to be seen as capable, competent, compassionate - and worthy of our respect.
(7) And, if you dare, try holding their hand firmly, pull back - also firmly, at first - and just see if that helps them point or spell to answer a basic question in a meaningful way.
The advice is free, so I can offer a money-back guarantee that you will see results if you are able to make the changes in (1) through (6) above. Number 7 is a bonus for those who feel ready.
Have fun. Stay positive. Let me know how I can help!
You probably find yourself a little skeptical and very unsure of where to start - or even whether to do so. You have probably heard that training is required to become a facilitator and that may require a trip to Syracuse, NY or Whittier, CA - something that seems entirely out of the question. It is not likely anyone close by is offering such training, and even if they are it might be several months in the future. What to do in the meantime?
Let me suggest the following, keeping in mind that not all of these suggestions may be feasible in your particular situation. Feel free to adapt the ideas to fit your circumstances.
(1) Presume competence. This is not an original idea of mine. It is the unofficial motto of almost all the autism conferences I have attended over the past ten years or more. Dismiss all entrenched ideas that people with autism are cognitively impaired (mentally retarded). I give you permission to look for glimmers of intelligence and then believe them when you see them. Regardless of any professional evaluations or test scores, start to see the person as capable of learning. Based on my many years of experience, I can assure you that all of these people are learning all the time - with or without the assistance and support of teachers. Borrowing yet another common phrase, this is always the "least dangerous assumption" when we meet a new person who is unable to speak, or limited in their abilities to function or communicate.
(2) Watch carefully how you speak and what you say. This follows naturally from the presumption of competence. It follows, but that doesn't mean it happens automatically. This will require some self-reflection and the changing of some long-standing habits. It happens on all levels; we might as well admit it. We don't always remember to speak at an age-appropriate level when we are talking to folks with "differences." (Perfect example: I typed "disabilities" and then decided there was a much better word to use). I have been working on this personally for about 20 years now, and still need to remind myself. We don't always remember to include a non-speaking person in the conversation. We talk about them in their presence as if they were invisible. We talk to caregivers or parents rather than to the persons themselves. And what we have to say is not always pleasant for them to hear.
(3) Look for ways to let the person know you believe in them and want to know more about what they are thinking. Say those words, or anything like those words that feels comfortable to you and fits the situation. Try talking aloud about what you have read or seen about the amazing people who are typing to communicate and then add that it would be wonderful to know what the person you care about might have to say if/when they learn to type. "WOW! Sue Rubin's story is amazing. I can't wait to hear all YOU have to say!" "I just know you are full of great ideas, and probably lots of questions too. Some day we'll find a way to get them all out." Watching one of the videos available or reading aloud from one of the books - the ones that tell of the many success stories of those who have learned to type - can be very effective, in so many ways! Do this over and over again, if possible.
(4) Never miss a chance to give the person meaningful choices. We find that so many of these young people have had people making choices for them most of their lives, so that even teens and adults - when they start to communicate - aren't sure what THEY really like. This might apply to food preferences, what clothes to wear, learning or leisure activities, what color they want their room painted, or just about any aspect of their lives. You don't need to wait for them to start typing; use whatever means of interaction is already in place to give choices frequently throughout the course of an ordinary day. Involve them in the decision-making process at every possible opportunity.
(5) If it's not already established, work on a reliable way for the person to give a yes/no answer to questions. A nod, or thumbs up, pointing to a smiley face, or maybe giving a smile, can all mean "yes." The trick is to be sure the answer is reliable and meaningful. Lots of these folks seem to be programmed to please the adults around them (yes, even those whose actions might seem totally meant to drive us to frustration much of the time!). They really DO want to please us, and they tend to give answers they think we want to hear. We want to undo that, and help them get in touch with their own feelings and preferences. This might seem overly simple and for some who think their kids are already controlling the lives of all family members by their behavior, it might seem totally unnecessary as a point of discussion. Again, my experience is that most kids need our help to learn not only how to ask for what they need, but more basically how to identify what they need or want.
(6) Help other people who are significant in the person's life to make these same changes. If you are lucky, others will learn from your example. Or maybe you will have to do some teaching, gently prodding them and moving them along on the continuum toward complete acceptance of this person as someone who is to be seen as capable, competent, compassionate - and worthy of our respect.
(7) And, if you dare, try holding their hand firmly, pull back - also firmly, at first - and just see if that helps them point or spell to answer a basic question in a meaningful way.
The advice is free, so I can offer a money-back guarantee that you will see results if you are able to make the changes in (1) through (6) above. Number 7 is a bonus for those who feel ready.
Have fun. Stay positive. Let me know how I can help!
Saturday, December 10, 2011
The Reality of Abuse
In May, 2010, I included the following paragraph in a blog posting about some of the reasons for the strong resistance to the use of Facilitated Communication:
"In some cases where a nonverbal child is finally given an effective means of communication we find that what they really want to tell us is not at all pleasant. Some children, and adults, when introduced to FC, started reporting instances of mistreatment or abuse. Without going into great detail about all the chaos this has caused, I ask you to consider the reality. We know many kids are abused, we know many reports of abuse turn out to be untrue, we know these situations are always complex, and always unpleasant. Add to that the sad reality that a child who is unable to speak, who likely presents serious challenges behaviorally, and who has the need for many different adult caretakers in their lifetime, is a particularly vulnerable target for a potential abuser. It's a sure recipe for possible abuse. And unfortunately, it is all too easy to make sure we never have to deal with such a situation - if we don't allow the use of FC."
Reports of child abuse - in its many forms - have been in the news a lot recently, but it's still a subject we really do not like to talk, or think, about. It happens, we all know that, and if we let ourselves think a little more, we would probably agree it happens far more often than we hear about.
In my early, heady days with Facilitated Communication, the subject didn't come up. I could easily tell people that not one single child had reported any sort of abuse to me in our many fun and exciting conversations. The closest we came would have to be those kids who reported sadly that someone important in their life failed to accept what I was trying to tell them and still treated them as if they were "retarded." (Their term invariably; I no longer used that label). It was frustrating, sometimes leading to angry outbursts, and of course something we worked diligently to change. But it wasn't really anything I would call "abuse."
And then, one day it happened. A child who meant a lot to me, one who trusted me to be there when needed, inserted a comment in the middle of a conversation we were having that sent up all sort of red flags. I was stunned and at a loss as to what to do.
This was the first, but it wasn't the last, and I think it's important to protect everyone's privacy in this matter, so I will avoid giving details. Suffice it to say, going forward with information like this is NOT easy. The very idea that a facilitator would even think of making up something like this is impossible for me to comprehend. Starting with school staff (teachers, aides) and moving up the line to social workers, psychologists, administrators, police officers, lawyers or judges -- no one knew what to do with information that was revealed in this way. Everyone suffered, and of course this includes most of all the children, their families, and anyone being accused of abuse of any kind.
Many, many mistakes were made in those early days, but I personally was lucky. The people I dealt with were largely supportive and helpful, moving forward cautiously and showing great respect for the various children involved. Were the cases resolved adequately? I wish I could give a strong affirmative answer to that; but we simply did not have enough accurate information to be absolutely sure of some of the situations. We may have failed some kids and their families. In some other cases with which I am familiar major disruptions to families and lives occurred. I have no idea what the truth is in those cases, except to know much pain was caused.
I continue to think about the larger picture. If kids are being abused, they deserve our help to put an immediate end to the situation and to help them deal with the trauma, not just in the present but for the long-term. If a person is accused of abuse, they have the right of presumed innocence until/unless proven guilty. At the same time, schools, agencies, institutions, and all involved in the criminal or legal system or social services need intense education and support so that cases - when reported by any individual and by any means - are handled properly.
What we cannot do is ignore a child's cry for help. We cannot take away their means of communication - or deny them access in the first place - because we don't want to hear what they might have to say. And if any type of abuse is reported by any child at any time in their lives and by any means of communication, the trusted people in their lives cannot simply push aside what they are trying to tell us. We owe them a fair and complete investigation, no matter how painful this might be.
"In some cases where a nonverbal child is finally given an effective means of communication we find that what they really want to tell us is not at all pleasant. Some children, and adults, when introduced to FC, started reporting instances of mistreatment or abuse. Without going into great detail about all the chaos this has caused, I ask you to consider the reality. We know many kids are abused, we know many reports of abuse turn out to be untrue, we know these situations are always complex, and always unpleasant. Add to that the sad reality that a child who is unable to speak, who likely presents serious challenges behaviorally, and who has the need for many different adult caretakers in their lifetime, is a particularly vulnerable target for a potential abuser. It's a sure recipe for possible abuse. And unfortunately, it is all too easy to make sure we never have to deal with such a situation - if we don't allow the use of FC."
Reports of child abuse - in its many forms - have been in the news a lot recently, but it's still a subject we really do not like to talk, or think, about. It happens, we all know that, and if we let ourselves think a little more, we would probably agree it happens far more often than we hear about.
In my early, heady days with Facilitated Communication, the subject didn't come up. I could easily tell people that not one single child had reported any sort of abuse to me in our many fun and exciting conversations. The closest we came would have to be those kids who reported sadly that someone important in their life failed to accept what I was trying to tell them and still treated them as if they were "retarded." (Their term invariably; I no longer used that label). It was frustrating, sometimes leading to angry outbursts, and of course something we worked diligently to change. But it wasn't really anything I would call "abuse."
And then, one day it happened. A child who meant a lot to me, one who trusted me to be there when needed, inserted a comment in the middle of a conversation we were having that sent up all sort of red flags. I was stunned and at a loss as to what to do.
This was the first, but it wasn't the last, and I think it's important to protect everyone's privacy in this matter, so I will avoid giving details. Suffice it to say, going forward with information like this is NOT easy. The very idea that a facilitator would even think of making up something like this is impossible for me to comprehend. Starting with school staff (teachers, aides) and moving up the line to social workers, psychologists, administrators, police officers, lawyers or judges -- no one knew what to do with information that was revealed in this way. Everyone suffered, and of course this includes most of all the children, their families, and anyone being accused of abuse of any kind.
Many, many mistakes were made in those early days, but I personally was lucky. The people I dealt with were largely supportive and helpful, moving forward cautiously and showing great respect for the various children involved. Were the cases resolved adequately? I wish I could give a strong affirmative answer to that; but we simply did not have enough accurate information to be absolutely sure of some of the situations. We may have failed some kids and their families. In some other cases with which I am familiar major disruptions to families and lives occurred. I have no idea what the truth is in those cases, except to know much pain was caused.
I continue to think about the larger picture. If kids are being abused, they deserve our help to put an immediate end to the situation and to help them deal with the trauma, not just in the present but for the long-term. If a person is accused of abuse, they have the right of presumed innocence until/unless proven guilty. At the same time, schools, agencies, institutions, and all involved in the criminal or legal system or social services need intense education and support so that cases - when reported by any individual and by any means - are handled properly.
What we cannot do is ignore a child's cry for help. We cannot take away their means of communication - or deny them access in the first place - because we don't want to hear what they might have to say. And if any type of abuse is reported by any child at any time in their lives and by any means of communication, the trusted people in their lives cannot simply push aside what they are trying to tell us. We owe them a fair and complete investigation, no matter how painful this might be.
Sunday, November 13, 2011
Using rewards: good or not so good?
I have been hearing and reading a lot lately about the use of rewards with children. I rejoice that we have - for the most part - learned to focus on the positive when working with young kids, and so there's much less punishing going on these days. Even the use of "time-out" has been softened, so that a child is encouraged to spend some time by themselves until they feel ready to rejoin their family or classmates. I think this reflects some understanding on our part (the adults in the situation) that kids might feel overwhelmed at times, and if we encourage them to take a break, what we now are calling "meltdowns" might be avoided.
All of this seems to be progress in a better direction than what I first encountered as a young teacher or a young parent. I was trained to use rewards (mostly edible in nature) and punishment (verbal reprimands or, if needed, a much harsher style of time-out that is now referred to as "seclusion" or even physical restraint). For those who were a little older, or better able to understand the process, we offered stickers or maybe money for good behavior and then loss of money or privileges when behavior was not acceptable. It was heavily based on the work of B.F. Skinner and tended to be quite effective for our purposes - to get kids to conform to the behavioral standards of the home or school environment.
The current discussion seems to focus on what happens to kids who learn to behave or perform in order to earn the approval of the adults in their lives. Punishment is gone, for the most part, but now we have a generation of "praise junkies" competing for good grades from their teachers and "Good job!" or "Way to go!" from their parents, coaches and other adults in their lives.
One great lesson I learned from the kids in my life who are on the autism spectrum is that they really DO want to please the adults in their lives and they really do NOT want to be praised when they accomplish a behavior or task that should be second-nature to them, but is not. In fact, often what we are asking them to do, and then praising them for when it is accomplished, is really very hard for them to do, and is actually learned by their non-disabled peers at a much earlier age, maybe even with little or no effort. Our praise may just call further attention to the fact that they are different, that they are far behind in their skill development, that they don't quite fit in. They are all too aware of this, and reminders may not be welcome.
Another lesson learned - from my wise and wonderful husband, many years ago - was the fine art of praising a child in more subtle ways. A highly effective one is talking to other adults, while the child is within hearing range, to tell how proud we are of the person they are becoming, the things they are learning, the skills they have acquired. For the kids with various special education needs and labels, the perfect time for this was the IEP meeting - and it worked best if the child could be present so they could hear me saying positive things about them.
The early days of IEP meetings, or parent/teacher conferences, seemed to be deficit-based. We'd sit around a big table and talk about all the things this particular child was unable to do and try to devise a plan to "fix" whatever deficits seemed most urgent at the time. (Mea culpa, yes. I DID that - and I am SO sorry!) Obviously, the parents were acutely aware of their child's lagging development; they certainly didn't need me reminding them!
But maybe we've overdone the positive approach. Maybe we give too much praise, talk too much about the positive, overlook some negatives that really do need attention. Or maybe we need to seek better ways of addressing the whole issue.
Here's one more lesson learned: When I am trying to help one of my grandchildren through a difficult time, or when I am dealing with a person with autism who happens to be nonverbal and is presenting us with some challenging behaviors, it works best if I can remain calm, and - when the time is right - find some way to involve them in figuring out what is wrong and how we can work together to make it better. The right time is usually not in the middle of a meltdown, and not when there is an audience of any kind. But if we can get away from other people and distractions, in a quiet moment when I can give them my undivided attention, and then really listen to what they have to say (or type if that's their way of communicating) --- often we can bring about changes that make a real difference.
I really do think most kids want to please us. They want us to be sincere in what we say to them - including especially any praise we might offer. And they want to be respected, which we can best show by trying to take their perspective and by involving them in the learning process.
All of this seems to be progress in a better direction than what I first encountered as a young teacher or a young parent. I was trained to use rewards (mostly edible in nature) and punishment (verbal reprimands or, if needed, a much harsher style of time-out that is now referred to as "seclusion" or even physical restraint). For those who were a little older, or better able to understand the process, we offered stickers or maybe money for good behavior and then loss of money or privileges when behavior was not acceptable. It was heavily based on the work of B.F. Skinner and tended to be quite effective for our purposes - to get kids to conform to the behavioral standards of the home or school environment.
The current discussion seems to focus on what happens to kids who learn to behave or perform in order to earn the approval of the adults in their lives. Punishment is gone, for the most part, but now we have a generation of "praise junkies" competing for good grades from their teachers and "Good job!" or "Way to go!" from their parents, coaches and other adults in their lives.
One great lesson I learned from the kids in my life who are on the autism spectrum is that they really DO want to please the adults in their lives and they really do NOT want to be praised when they accomplish a behavior or task that should be second-nature to them, but is not. In fact, often what we are asking them to do, and then praising them for when it is accomplished, is really very hard for them to do, and is actually learned by their non-disabled peers at a much earlier age, maybe even with little or no effort. Our praise may just call further attention to the fact that they are different, that they are far behind in their skill development, that they don't quite fit in. They are all too aware of this, and reminders may not be welcome.
Another lesson learned - from my wise and wonderful husband, many years ago - was the fine art of praising a child in more subtle ways. A highly effective one is talking to other adults, while the child is within hearing range, to tell how proud we are of the person they are becoming, the things they are learning, the skills they have acquired. For the kids with various special education needs and labels, the perfect time for this was the IEP meeting - and it worked best if the child could be present so they could hear me saying positive things about them.
The early days of IEP meetings, or parent/teacher conferences, seemed to be deficit-based. We'd sit around a big table and talk about all the things this particular child was unable to do and try to devise a plan to "fix" whatever deficits seemed most urgent at the time. (Mea culpa, yes. I DID that - and I am SO sorry!) Obviously, the parents were acutely aware of their child's lagging development; they certainly didn't need me reminding them!
But maybe we've overdone the positive approach. Maybe we give too much praise, talk too much about the positive, overlook some negatives that really do need attention. Or maybe we need to seek better ways of addressing the whole issue.
Here's one more lesson learned: When I am trying to help one of my grandchildren through a difficult time, or when I am dealing with a person with autism who happens to be nonverbal and is presenting us with some challenging behaviors, it works best if I can remain calm, and - when the time is right - find some way to involve them in figuring out what is wrong and how we can work together to make it better. The right time is usually not in the middle of a meltdown, and not when there is an audience of any kind. But if we can get away from other people and distractions, in a quiet moment when I can give them my undivided attention, and then really listen to what they have to say (or type if that's their way of communicating) --- often we can bring about changes that make a real difference.
I really do think most kids want to please us. They want us to be sincere in what we say to them - including especially any praise we might offer. And they want to be respected, which we can best show by trying to take their perspective and by involving them in the learning process.
Thursday, September 29, 2011
Guest Blog - More Thoughts from Roy
My friend Roy has a special interest in helping more people become aware of the advantages of typing to communicate. He has been giving presentations when invited to do so, but those opportunities don't come nearly often enough. I am hoping it will help to give him a platform here.
from Roy - in his own words:
JUST KNOW MY LIFE CHANGED MORE THAN I COULD HAVE DREAMED WHEN I HAD THE OPPORTUNITY TO MAKE MY THOUGHTS KNOWN.
LET YOUR MIND BE OPEN TO LOTS OF NEW POSSIBILITIES. LOOK INTO YOUR HEART AND FEEL THE LOVE WE ALL NEED.
IF YOU HAVE THE DESIRE IT PROBABLY WILL WORK. LOOK INTO YOUR HEART AND FREE YOUR HEART UP SO THAT IT IS POSSIBLE TO BELIEVE. USING FC IS THE BEST THING THAT EVER HAPPENED IN MY LIFE. MORE PEOPLE NEED TO TRY THIS SO KIDS MIGHT HAVE HOPE FOR THEIR FUTURE. KEEP TRYING TO USE FC. DON’T GIVE UP. YOUR CHILD NEEDS A VOICE.
I MIGHT NOT LOOK LIKE I KNOW MUCH BUT MY MIND IS GOOD AND MY HEART IS FULL OF LOVE FOR EVERY LIVING THING.
I can't say it any better than this.
from Roy - in his own words:
JUST KNOW MY LIFE CHANGED MORE THAN I COULD HAVE DREAMED WHEN I HAD THE OPPORTUNITY TO MAKE MY THOUGHTS KNOWN.
LET YOUR MIND BE OPEN TO LOTS OF NEW POSSIBILITIES. LOOK INTO YOUR HEART AND FEEL THE LOVE WE ALL NEED.
IF YOU HAVE THE DESIRE IT PROBABLY WILL WORK. LOOK INTO YOUR HEART AND FREE YOUR HEART UP SO THAT IT IS POSSIBLE TO BELIEVE. USING FC IS THE BEST THING THAT EVER HAPPENED IN MY LIFE. MORE PEOPLE NEED TO TRY THIS SO KIDS MIGHT HAVE HOPE FOR THEIR FUTURE. KEEP TRYING TO USE FC. DON’T GIVE UP. YOUR CHILD NEEDS A VOICE.
I MIGHT NOT LOOK LIKE I KNOW MUCH BUT MY MIND IS GOOD AND MY HEART IS FULL OF LOVE FOR EVERY LIVING THING.
I can't say it any better than this.
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