Resistance: opposition of some force, thing, etc. to another or others. (Webster's New World Dictionary).
So, why is there so much resistance to the use of Facilitated Communication?
This question has been with me for over 15 years now, giving me lots of time to come up with possible answers. But first, let's talk a little about just where the resistance comes from.
I have dealt with school staff - mostly administrators and fellow teachers - who overtly or covertly have opposed what I was doing in my classroom. I have learned that highly respected medical (and other professional) personnel are quite vocal in their rejection of FC. Everyone involved with FC in any way was certainly impacted by the negative media blitz that took place back in 1993-94. The repercussions continue to this day.
For the parents and families, it's been a tremendous struggle. Most started out doubting whether this particular method of communication (or any other) might be of any help to their child. Most were afraid to even open themselves to the possibility that their child - often considered to be "severely" cognitively impaired - might actually be intelligent, that there might be a thinking, caring, fully aware person locked inside the silent (maybe screaming) physical body. If their child was then successful using FC, there followed a confusing mixture of emotions - joy, regret, guilt, hope, more doubt, and on and on. More likely than not, these families also met with skepticism from their relatives, neighbors, doctors and others. As resistance grew in the ranks of the "experts" - fueled by loud criticism coming from the media - many parents drew back and even gave up. Only a few were strong enough to hang in there and continue to support their child against the rising tide.
I personally felt the greatest resistance within the professionals who make up the special education community. Perhaps because we have been taught to think about DIS-ability, and our training is largely focused on remediating deficits, we are programmed to have low expectations of our students. Sure we want what is best for them, and we want them to reach their full potential, but something holds us back from even considering that we might be wrong in our best guess as to what that potential might be. We get caught up in psychological evaluations, developmental checklists, and IQ scores, thinking these measures really describe the child and tell us how or what to teach.
Accepting Facilitated Communication as real and valid means admitting we were wrong - about so many things! - and some people just can't do that. It's a humbling experience to apologize to a former student that we vastly underestimated their abilities, but so very liberating and exciting to do just that and then move forward.
But making such a significant change isn't easy. Many families find it difficult, or even impossible, to change the way they interact with their nonspeaking child. Over the years, they have established patterns of family life that work for them. When I as the teacher present the possibility that their child might in fact understand and know a whole lot more than anyone has previously thought - well, maybe you can imagine what an impact this might have. It can go either way: some families are thrilled and the child's life is forever changed; others give the possibilities some thought, maybe try FC themselves, but just can't make the leap to a new way of thinking. All too often, friends, family or professionals step in here and warn such parents that FC has not been "proven" to be valid, or worse yet, is surely a hoax, preying on parents who want so badly to deny their child's disability that they will believe anything.
Resistance to FC happens because it's a huge paradigm shift in thinking, and change is never easy. But there are other possible contributing factors as well. School districts are afraid of additional costs that might result if facilitators are needed for each student. (Truth is - most of the students I worked with required full-time adult support for other reasons; there is no reason those adults couldn't also be trained to use FC - and so much to gain if the child is then able to become an active participant in the regular education curriculum). We tend to think in the short-term, unfortunately, and not look ahead to the possibility that this child might need a whole lot LESS in the way of support as an adult if they receive an appropriate education in their younger years. A lifetime of custodial care is very expensive, after all.
I have to also include here two subjects that are seldom discussed. 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.
Some children, and adults, have surprised us in a very different way when they finally are given a way to communicate their thoughts. Their rich inner life includes deeply spiritual thoughts - often far beyond anything we might have thought possible. Poetry is common, along with opinions about God, heaven, the human condition, concerns for the planet - and the list goes on. Most families find this exciting, but some are overwhelmed or afraid, and the resistance sets in.
My personal feeling is that the single most significant factor in the resistance is an inability to consider the possibilities if what is being said via FC is real. To many people it is just not possible that these individuals could be so intelligent and capable. It goes against everything we've learned, everything we've taught - and just about everything we've done in the name of "helping" these people. We've been so very wrong, and we have to change. That's a hard thing to do. It's easier to resist.
Unfortunately.
Friday, May 28, 2010
Monday, May 24, 2010
Resistance - #2
Resistance: the act of resisting, opposing, withstanding, etc. (Webster's New World Dictionary)
The question of why people who are unable to speak might be resistant to using alternative means of communication comes up regularly, and as might be expected, any answer I might give is purely speculative - although based on many years of personal experience, observation, and reflection.
Consider the situation: A child, teen or adult who has essentially no effective means of communication has probably gotten quite used to not speaking. There may or may not be visible signs of frustration when they aren't able to let those around them know what they need or want, or what might be wrong in their environment, and frequently this frustration leads to what we often describe as a tantrum, or meltdown. When a typically developing (NT) child is just beginning to speak, we see similar behavior on a regular basis - thus the common reference to the "terrible twos." The NT child, however, moves on and adds rapidly to their verbal repertoire, quickly finding that words have power and grown-ups usually do listen and respond.
It's very different for the child who is unable to speak. As time goes on, they tend to find ways to meet their own needs, or use behavior to get what they want. Taking an adult by the hand and leading them to the pantry where the snacks are kept seems like a totally acceptable - and highly effective - way to handle the desire to eat when one is unable to produce spoken words that make sense in the situation. The tantrums or meltdowns are also behavior, of course, but so much less desirable, and not even always effective, since the adult might not be able to figure out what the child wants, or might decide not to "reward" such an outburst.
Those around the nonspeaking child also learn behavior patterns to fit their needs. They might find themselves being hyperalert to warning signs that the child is about to "lose it," they might find themselves anticipating the child's needs as often as possible to avoid stressful situations, and - if they are really lucky - they might find a basic yes/no or simple sign language system that works more or less successfully.
Most of all, everyone gets used to the idea that the child is unable to speak. This isn't all bad. After all, life can be extremely unpleasant if a family member has tantrums on a regular basis because their needs aren't being met.
The child gets comfortable with being silent as well. They just don't expect to be included in conversations, and much of the family life goes on around them without a whole lot of involvement on their part.
So, when someone (like me) comes along with a letter board and suggests that they might want to let us know what they are thinking, it shouldn't come as a surprise if our offer is met with resistance. The key in such situations is to find interactions that are highly motivating - food, games, videos, recreational activities, whatever means a lot to the particular person. And any cooperation on their part should be appreciated and rewarded. Using communication (FC or ANY kind!) should give them some control and power. In time, they can and will learn that words can accomplish a whole lot more, in a much more pleasant way, than behavior struggles ever did.
There are other reasons for resistance, and each situation is different, of course, making it hard to speak here in generalities. I will mention some of the difficulties I have encountered, and then encourage any of you to add a comment to the blog or contact me personally if you wish some more specific suggestions or advice.
Many of the young kids I used FC with in the early years became highly resistant once we were surrounded by skeptics. We had been having lots of success and lots of fun with what we were doing, but as soon as the media exposure turned negative, I felt a difference in what the kids were willing to do. They would type with me when no one else was around, but had no interest when visitors were present. It didn't help at all when one of the parents insisted that I stop all use of FC with their child immediately - that impacted all the other FC users in my small group quite dramatically.
Some young people have deep, maybe even dark thoughts that they aren't at all eager to share. It is totally understandable why a child or adult who has been abused or mistreated in some way would be resistant to our efforts to have them share what is on their mind. Even if we are asking fun questions like what you want for a treat or what you want to watch on TV, if you are being given access to communication for the first time in your life and you have some unpleasant thoughts or memories that are being brought to the surface - resistance is to be expected. If you have any such suspicions or concerns, proceed cautiously and if at all possible, involve other trusted adults in the process. Again, please contact me privately if you want to talk about a particular situation.
Most of the young people I have worked with have a LOT going on in their minds, and it's often hard for them to sort through it all to answer a particular question or put their own ideas into typed words. I regularly talk about this, reminding them that I understand this is all new to them, and they might have so much to say they don't know where or how to start. Before the situation gets frustrating, we stop, with the promise that we'll try again real soon.
Sadly, many of the kids I work with have either had FC taken away from them personally at some point, or have seen it happen to someone they know. Breaking through resistance in these situations is very difficult. I do everything I can to build trust, but I also have to be honest and deal with the reality that until we have school and family working together in a supportive relationship the whole process is often on shaky ground.
If you are dealing with a lot of resistance on the part of a person you care about, keep this in mind. When I was finding it very hard to learn to meditate successfully, a wise leader assured me that often means there's a lot inside and the effort will be great, but well worth it. That seems to be true with many nonspeaking individuals as well - those who resist the most often have the most to say.
Once again - patient persistence. Hang in there!
The question of why people who are unable to speak might be resistant to using alternative means of communication comes up regularly, and as might be expected, any answer I might give is purely speculative - although based on many years of personal experience, observation, and reflection.
Consider the situation: A child, teen or adult who has essentially no effective means of communication has probably gotten quite used to not speaking. There may or may not be visible signs of frustration when they aren't able to let those around them know what they need or want, or what might be wrong in their environment, and frequently this frustration leads to what we often describe as a tantrum, or meltdown. When a typically developing (NT) child is just beginning to speak, we see similar behavior on a regular basis - thus the common reference to the "terrible twos." The NT child, however, moves on and adds rapidly to their verbal repertoire, quickly finding that words have power and grown-ups usually do listen and respond.
It's very different for the child who is unable to speak. As time goes on, they tend to find ways to meet their own needs, or use behavior to get what they want. Taking an adult by the hand and leading them to the pantry where the snacks are kept seems like a totally acceptable - and highly effective - way to handle the desire to eat when one is unable to produce spoken words that make sense in the situation. The tantrums or meltdowns are also behavior, of course, but so much less desirable, and not even always effective, since the adult might not be able to figure out what the child wants, or might decide not to "reward" such an outburst.
Those around the nonspeaking child also learn behavior patterns to fit their needs. They might find themselves being hyperalert to warning signs that the child is about to "lose it," they might find themselves anticipating the child's needs as often as possible to avoid stressful situations, and - if they are really lucky - they might find a basic yes/no or simple sign language system that works more or less successfully.
Most of all, everyone gets used to the idea that the child is unable to speak. This isn't all bad. After all, life can be extremely unpleasant if a family member has tantrums on a regular basis because their needs aren't being met.
The child gets comfortable with being silent as well. They just don't expect to be included in conversations, and much of the family life goes on around them without a whole lot of involvement on their part.
So, when someone (like me) comes along with a letter board and suggests that they might want to let us know what they are thinking, it shouldn't come as a surprise if our offer is met with resistance. The key in such situations is to find interactions that are highly motivating - food, games, videos, recreational activities, whatever means a lot to the particular person. And any cooperation on their part should be appreciated and rewarded. Using communication (FC or ANY kind!) should give them some control and power. In time, they can and will learn that words can accomplish a whole lot more, in a much more pleasant way, than behavior struggles ever did.
There are other reasons for resistance, and each situation is different, of course, making it hard to speak here in generalities. I will mention some of the difficulties I have encountered, and then encourage any of you to add a comment to the blog or contact me personally if you wish some more specific suggestions or advice.
Many of the young kids I used FC with in the early years became highly resistant once we were surrounded by skeptics. We had been having lots of success and lots of fun with what we were doing, but as soon as the media exposure turned negative, I felt a difference in what the kids were willing to do. They would type with me when no one else was around, but had no interest when visitors were present. It didn't help at all when one of the parents insisted that I stop all use of FC with their child immediately - that impacted all the other FC users in my small group quite dramatically.
Some young people have deep, maybe even dark thoughts that they aren't at all eager to share. It is totally understandable why a child or adult who has been abused or mistreated in some way would be resistant to our efforts to have them share what is on their mind. Even if we are asking fun questions like what you want for a treat or what you want to watch on TV, if you are being given access to communication for the first time in your life and you have some unpleasant thoughts or memories that are being brought to the surface - resistance is to be expected. If you have any such suspicions or concerns, proceed cautiously and if at all possible, involve other trusted adults in the process. Again, please contact me privately if you want to talk about a particular situation.
Most of the young people I have worked with have a LOT going on in their minds, and it's often hard for them to sort through it all to answer a particular question or put their own ideas into typed words. I regularly talk about this, reminding them that I understand this is all new to them, and they might have so much to say they don't know where or how to start. Before the situation gets frustrating, we stop, with the promise that we'll try again real soon.
Sadly, many of the kids I work with have either had FC taken away from them personally at some point, or have seen it happen to someone they know. Breaking through resistance in these situations is very difficult. I do everything I can to build trust, but I also have to be honest and deal with the reality that until we have school and family working together in a supportive relationship the whole process is often on shaky ground.
If you are dealing with a lot of resistance on the part of a person you care about, keep this in mind. When I was finding it very hard to learn to meditate successfully, a wise leader assured me that often means there's a lot inside and the effort will be great, but well worth it. That seems to be true with many nonspeaking individuals as well - those who resist the most often have the most to say.
Once again - patient persistence. Hang in there!
Monday, May 17, 2010
Resistance - #1
Resistance: a force that retards, hinders or opposes motion. (Webster's New World Dictionary).
This kind of resistance is what we want to provide to people who are learning to type to communicate. Along with conveying a sense of confidence in the person's ability to think/learn/communicate and the facilitator's ability to actually make the process happen, physical resistance is essential to facilitated communication.
When we as facilitators hold the hand or wrist of a person who is learning to communicate, the observer can't tell just how much backward pressure we are exerting. And, of course, we are always trying to provide the least amount of physical support possible, to encourage ultimate independence once the process is well-established. But in the early stages, firm resistance is likely to be needed.
If attempts to begin the FC process aren't working, or if adding a new facilitator to the dynamic isn't working, I recommend adding more in the way of such resistance. I find that people watch me work with someone who types to communicate and then they try to do things just the way I do. I forget all too often to remind them that when I started out as a facilitator (way, way back in 1992), things didn't go as smoothly as they do now. And whenever I start with a new potential typer, I too have to start at the very beginning - and that almost always means providing lots of physical support: holding their hand firmly and confidently, and pulling back very deliberately until they are ready to make a movement forward toward the keyboard, letter board or choice board.
It is natural to focus on working toward independence and/or eliminating all possible facilitator influence - but as a result, a new facilitator tends to gingerly extend their hand, lightly holding the wrist or forearm, and quietly wait for something to happen. What often happens is nothing, or a meaningless string of letters, and essentially only frustration on all sides.
If FC is not working for a particular typer-facilitator duo, I strongly recommend grasping the full hand, giving lots of resistance, or pull-back, and starting out with short, single-word responses that are of high motivational value. Any time a string of three or more consonants are typed (obviously not leading to a meaningful word) stop briefly, and try again.
"Oops, that doesn't look like a word I know. Let's start again."
"Maybe that's not something you care about. How about if we just try typing your name."
"Hmm. Not sure what that might be. Can you type the word 'pizza?'"
Always remind the person that you know he has lots more words/ideas in his head, but the two of you need to learn to work together and YOU are just a beginner, so that's why you are starting out with "easy" work.
My belief is that this resistance slows the neurological process down so that the person can really think about what is being asked of them, sort through all the words, pictures, ideas or static buzzing around inside their head, and then when all goes well, produce a response that makes sense. It also breaks all the old patterns that might be in place - ignoring the questions of others; echolalic speech, typing or thinking; or whatever. Just staying in one place long enough to have someone ask a question and then consider giving an answer might be a major step forward for many individuals. A firm grip on their hand - if they will allow us to do that - can certainly help with staying put at least briefly.
Celebrate every step forward. Please do write with any questions or comments you might have.
Above all, don't give up!
This kind of resistance is what we want to provide to people who are learning to type to communicate. Along with conveying a sense of confidence in the person's ability to think/learn/communicate and the facilitator's ability to actually make the process happen, physical resistance is essential to facilitated communication.
When we as facilitators hold the hand or wrist of a person who is learning to communicate, the observer can't tell just how much backward pressure we are exerting. And, of course, we are always trying to provide the least amount of physical support possible, to encourage ultimate independence once the process is well-established. But in the early stages, firm resistance is likely to be needed.
If attempts to begin the FC process aren't working, or if adding a new facilitator to the dynamic isn't working, I recommend adding more in the way of such resistance. I find that people watch me work with someone who types to communicate and then they try to do things just the way I do. I forget all too often to remind them that when I started out as a facilitator (way, way back in 1992), things didn't go as smoothly as they do now. And whenever I start with a new potential typer, I too have to start at the very beginning - and that almost always means providing lots of physical support: holding their hand firmly and confidently, and pulling back very deliberately until they are ready to make a movement forward toward the keyboard, letter board or choice board.
It is natural to focus on working toward independence and/or eliminating all possible facilitator influence - but as a result, a new facilitator tends to gingerly extend their hand, lightly holding the wrist or forearm, and quietly wait for something to happen. What often happens is nothing, or a meaningless string of letters, and essentially only frustration on all sides.
If FC is not working for a particular typer-facilitator duo, I strongly recommend grasping the full hand, giving lots of resistance, or pull-back, and starting out with short, single-word responses that are of high motivational value. Any time a string of three or more consonants are typed (obviously not leading to a meaningful word) stop briefly, and try again.
"Oops, that doesn't look like a word I know. Let's start again."
"Maybe that's not something you care about. How about if we just try typing your name."
"Hmm. Not sure what that might be. Can you type the word 'pizza?'"
Always remind the person that you know he has lots more words/ideas in his head, but the two of you need to learn to work together and YOU are just a beginner, so that's why you are starting out with "easy" work.
My belief is that this resistance slows the neurological process down so that the person can really think about what is being asked of them, sort through all the words, pictures, ideas or static buzzing around inside their head, and then when all goes well, produce a response that makes sense. It also breaks all the old patterns that might be in place - ignoring the questions of others; echolalic speech, typing or thinking; or whatever. Just staying in one place long enough to have someone ask a question and then consider giving an answer might be a major step forward for many individuals. A firm grip on their hand - if they will allow us to do that - can certainly help with staying put at least briefly.
Celebrate every step forward. Please do write with any questions or comments you might have.
Above all, don't give up!
Saturday, April 3, 2010
Why Won't He/She Type With Me?
A common difficulty with Facilitated Communication is that a person starts typing with one trusted adult or peer but is unable to type with others. As common as this is, it's extremely difficult to sort out why this is happening.
An obvious factor is the difficulty that so many of our children or clients have with generalization. This is one of the reasons why speech therapists, occupational therapists and other specialists have tried to work in the regular classroom rather than do what is called "pull-out" therapies. It's also why in-home therapy is so highly respected - and effective - for young children.
In the early years of FC, we saw this situation developing and when dealing with parents who weren't being successful at home, we tried to ease their frustration (or guilt, skepticism, whatever) by pointing out that many of our kids were able to type at school but not at home, or able to type with one or two people at school and not others. BIG mistake! Only a few of the parents I worked with were ever successful in typing with their kids - and they had to be SO very patient and persistent in their efforts to accomplish this. Many gave up early on; others fell prey to those who were constantly pointing out to them that FC had not been "proven" and in fact might be a complete hoax.
Obviously we lost many of these kids and their families when the media started attacking everything concerned with FC. But even for those who remained supportive of what we were doing at school, can you imagine being in a situation where the teacher is having deep conversations at school with your child and you are limited at home to using pictures or pointing to meet their basic needs? And then what happens when that one trusted facilitator at school takes a medical leave or loses their job (Both of which happened to me during those years)?
If I had it to do over again . . . I would have had the parents in school as much as their schedules would allow. If their own child wasn't ready to type with them, maybe another child would be interested. I would have spent much more time in their homes, giving them support and encouragement to find ways to make FC a useful part of the home routine.
If I had had an ideal supportive school situation . . . I would have trained everyone who was interested and provided ongoing support and encouragement. We would never, ever settle for a situation where a child typed with only one facilitator - two, three or more would be desirable. Family members would be an integral part of our communication team.
If I had the ideal situation now . . . I would be giving regular training sessions to get lots of people comfortable using FC and ready to try it with people of all ages who might benefit from this form of supported communication. Every single training situation would also involve ongoing support so that no one is ever left alone trying to make FC work. I would be "on call" whenever the process seems to be stalled or breaking down.
I have many of you in mind as I write this. I know of far too many situations where FC has come to a halt, despite your great desire and strong efforts. For you, I will try to make a few more specific suggestions (since I am not close enough for a home visit, unfortunately).
(1) Go back to a video such as "Autism is a World" and watch it with your child/client over and over again. Talk about it. Remind them that you know they have lots to say and would love to be able to converse on a regular basis. This isn't just my idea, by the way. This one has come (strong and clear) from my good friend Aaron in Alberta. Thanks, Aaron - you are one of my very special teachers and a true inspiration.
(2) Find one of the books or web sites that tell of success stories. Same as above - read them aloud (over and over again, if possible). Naturally, I think my book is a great starting point, but so is "Sharing Our Wisdom" or the Breaking the Barriers web site.
(3) Find things that are highly motivating. If they can use FC to make requests for the things they really, really like - let them have it (within reason, of course)! I can't say enough about the importance of helping them see that their use of communication gives them REAL power! This doesn't have to be food or drink. Taking a walk, watching a video, even taking a break and doing nothing might have high motivational value. You know this person better than I do - trust your intuition and instincts.
(4) Look (and keep looking) for a fun situation. Maybe a TV game show? board game, online trivia or other game? Watching movies or TV together - ask basic questions about the content, move to opinion-type questions.
(5) Make every possible effort to attend a conference where FC is featured. Check out the web sites for Autcom, DEAL (for those "down under"), WAPADH (California), WOW (Colorado) or the FC Institute (Syracuse, NY).
(6) NEVER give up. Choose what works for you - a brief period set aside regularly for FC - daily, two or three times daily, maybe? Or an intense weekend where FC is the whole focus and other family members are also involved? (I am willing to come too, if we can find a way to cover my expenses. Tyler and his family in Manitoba made a believer out of me as to the value of this plan!)
Please do comment here if you have questions I can answer. If you'd rather keep it a little more private, write to me at crbrandl777@gmail.com
An obvious factor is the difficulty that so many of our children or clients have with generalization. This is one of the reasons why speech therapists, occupational therapists and other specialists have tried to work in the regular classroom rather than do what is called "pull-out" therapies. It's also why in-home therapy is so highly respected - and effective - for young children.
In the early years of FC, we saw this situation developing and when dealing with parents who weren't being successful at home, we tried to ease their frustration (or guilt, skepticism, whatever) by pointing out that many of our kids were able to type at school but not at home, or able to type with one or two people at school and not others. BIG mistake! Only a few of the parents I worked with were ever successful in typing with their kids - and they had to be SO very patient and persistent in their efforts to accomplish this. Many gave up early on; others fell prey to those who were constantly pointing out to them that FC had not been "proven" and in fact might be a complete hoax.
Obviously we lost many of these kids and their families when the media started attacking everything concerned with FC. But even for those who remained supportive of what we were doing at school, can you imagine being in a situation where the teacher is having deep conversations at school with your child and you are limited at home to using pictures or pointing to meet their basic needs? And then what happens when that one trusted facilitator at school takes a medical leave or loses their job (Both of which happened to me during those years)?
If I had it to do over again . . . I would have had the parents in school as much as their schedules would allow. If their own child wasn't ready to type with them, maybe another child would be interested. I would have spent much more time in their homes, giving them support and encouragement to find ways to make FC a useful part of the home routine.
If I had had an ideal supportive school situation . . . I would have trained everyone who was interested and provided ongoing support and encouragement. We would never, ever settle for a situation where a child typed with only one facilitator - two, three or more would be desirable. Family members would be an integral part of our communication team.
If I had the ideal situation now . . . I would be giving regular training sessions to get lots of people comfortable using FC and ready to try it with people of all ages who might benefit from this form of supported communication. Every single training situation would also involve ongoing support so that no one is ever left alone trying to make FC work. I would be "on call" whenever the process seems to be stalled or breaking down.
I have many of you in mind as I write this. I know of far too many situations where FC has come to a halt, despite your great desire and strong efforts. For you, I will try to make a few more specific suggestions (since I am not close enough for a home visit, unfortunately).
(1) Go back to a video such as "Autism is a World" and watch it with your child/client over and over again. Talk about it. Remind them that you know they have lots to say and would love to be able to converse on a regular basis. This isn't just my idea, by the way. This one has come (strong and clear) from my good friend Aaron in Alberta. Thanks, Aaron - you are one of my very special teachers and a true inspiration.
(2) Find one of the books or web sites that tell of success stories. Same as above - read them aloud (over and over again, if possible). Naturally, I think my book is a great starting point, but so is "Sharing Our Wisdom" or the Breaking the Barriers web site.
(3) Find things that are highly motivating. If they can use FC to make requests for the things they really, really like - let them have it (within reason, of course)! I can't say enough about the importance of helping them see that their use of communication gives them REAL power! This doesn't have to be food or drink. Taking a walk, watching a video, even taking a break and doing nothing might have high motivational value. You know this person better than I do - trust your intuition and instincts.
(4) Look (and keep looking) for a fun situation. Maybe a TV game show? board game, online trivia or other game? Watching movies or TV together - ask basic questions about the content, move to opinion-type questions.
(5) Make every possible effort to attend a conference where FC is featured. Check out the web sites for Autcom, DEAL (for those "down under"), WAPADH (California), WOW (Colorado) or the FC Institute (Syracuse, NY).
(6) NEVER give up. Choose what works for you - a brief period set aside regularly for FC - daily, two or three times daily, maybe? Or an intense weekend where FC is the whole focus and other family members are also involved? (I am willing to come too, if we can find a way to cover my expenses. Tyler and his family in Manitoba made a believer out of me as to the value of this plan!)
Please do comment here if you have questions I can answer. If you'd rather keep it a little more private, write to me at crbrandl777@gmail.com
Thursday, February 25, 2010
Very Busy News Day
It wasn't really my plan today to spend all day on the computer. But you know how it goes, some days the mailbox is overflowing with messages and links. Somehow, all those mundane household tasks don't have much appeal.
I won't write much this time; instead will hope you are able to pursue any of the following stories that appeal to you personally.
I will make a brief, POSITIVE, comment on each topic and will deliberately not include the current story about some politician who is saying that having a child born with a disability is a punishment from God. YIKES! What is he thinking????
Time Magazine: "Who's Afraid of Jenny McCarthy?"
I am certainly NOT afraid of Jenny McCarthy, although I usually choose not to watch when she is on one of the many TV shows where she is a regular. I have known so many parents like her - amazingly strong advocates for their children AND convinced that autism is caused by vaccinations and/or curable by dietary changes or supplements. What I like is that she is always positive about her son's autism and his potential. We need more of that optimism. I see autism as so much more complex, and as a lifelong condition, so the "cure" idea doesn't really resonate with me personally, nor the overly simple explanation of a single cause.
New York Times: "Do Toxins Cause Autism?" by Nicholas Kristof
Be sure to read the comments that follow this article. I happen to be a serious follower of Nicholas Kristof, and very impressed by the causes he takes on. He might be surprised at the hornets' nest he stirs up on this one. But I give him tons of credit for entering the fray. I do think we are dealing with a condition that is essentially genetic in origin, but triggered by environmental factors. But our environment is so full of poisons -- how will we ever sort it out? Again, autism is a complex condition; simple answers are unlikely.
Temple Grandin and TED: "The World Needs All Kinds of Minds"
Don't miss this one. Temple Grandin has taught all of us SO MUCH about autism. I love her emphasis on making the most of a person's strong interests and talents. I agree totally that the world NEEDS autism
National and state legislation regarding the use of restraints and seclusion:
My state (Wisconsin) is one of the many that is currently dealing with this issue. It is not surprising at all that people become very emotional when discussing this topic. Having been a teacher for about 30 years, I have some empathy for the stand of teachers and admininstrators that they have to provide a safe environment for everyone in their buildings. But I know that far too little is done to help teachers understand autism and act proactively to support students with serious differences in sensory processing, poor communication skills, and extremely high social anxiety. Restraint and seclusion are invariably over-used once they are introduced as acceptable policy. I am all for modifying the environment rather than focusing on modifying behavior. We must do more to educate everyone!
New Book from Amazon: "Autism and Talent" by Fransesca Happe and Uta Frith, eds.
This sounds wonderful. What is it about autism and genius/talent, anyhow? It's about time we recognize the rich resources of people with autism. Can't wait to see this book. But it is VERY expensive. I wonder if my local library will order it???
Disability Studies Quarterly/"Autism and the Concept of Neurodiversity" edited by Ralph and Emily Savarese:
Lots of great reading here. I will need more than a full day to absorb all this. Mark it as a favorite!
NPR interview (Ralph and Emily Savarese, Jamie Burke and others):
This is my personal favorite, but so far I have been unable to find it online. If anyone finds a link, PLEASE let me know!
Happy reading, listening, viewing
I won't write much this time; instead will hope you are able to pursue any of the following stories that appeal to you personally.
I will make a brief, POSITIVE, comment on each topic and will deliberately not include the current story about some politician who is saying that having a child born with a disability is a punishment from God. YIKES! What is he thinking????
Time Magazine: "Who's Afraid of Jenny McCarthy?"
I am certainly NOT afraid of Jenny McCarthy, although I usually choose not to watch when she is on one of the many TV shows where she is a regular. I have known so many parents like her - amazingly strong advocates for their children AND convinced that autism is caused by vaccinations and/or curable by dietary changes or supplements. What I like is that she is always positive about her son's autism and his potential. We need more of that optimism. I see autism as so much more complex, and as a lifelong condition, so the "cure" idea doesn't really resonate with me personally, nor the overly simple explanation of a single cause.
New York Times: "Do Toxins Cause Autism?" by Nicholas Kristof
Be sure to read the comments that follow this article. I happen to be a serious follower of Nicholas Kristof, and very impressed by the causes he takes on. He might be surprised at the hornets' nest he stirs up on this one. But I give him tons of credit for entering the fray. I do think we are dealing with a condition that is essentially genetic in origin, but triggered by environmental factors. But our environment is so full of poisons -- how will we ever sort it out? Again, autism is a complex condition; simple answers are unlikely.
Temple Grandin and TED: "The World Needs All Kinds of Minds"
Don't miss this one. Temple Grandin has taught all of us SO MUCH about autism. I love her emphasis on making the most of a person's strong interests and talents. I agree totally that the world NEEDS autism
National and state legislation regarding the use of restraints and seclusion:
My state (Wisconsin) is one of the many that is currently dealing with this issue. It is not surprising at all that people become very emotional when discussing this topic. Having been a teacher for about 30 years, I have some empathy for the stand of teachers and admininstrators that they have to provide a safe environment for everyone in their buildings. But I know that far too little is done to help teachers understand autism and act proactively to support students with serious differences in sensory processing, poor communication skills, and extremely high social anxiety. Restraint and seclusion are invariably over-used once they are introduced as acceptable policy. I am all for modifying the environment rather than focusing on modifying behavior. We must do more to educate everyone!
New Book from Amazon: "Autism and Talent" by Fransesca Happe and Uta Frith, eds.
This sounds wonderful. What is it about autism and genius/talent, anyhow? It's about time we recognize the rich resources of people with autism. Can't wait to see this book. But it is VERY expensive. I wonder if my local library will order it???
Disability Studies Quarterly/"Autism and the Concept of Neurodiversity" edited by Ralph and Emily Savarese:
Lots of great reading here. I will need more than a full day to absorb all this. Mark it as a favorite!
NPR interview (Ralph and Emily Savarese, Jamie Burke and others):
This is my personal favorite, but so far I have been unable to find it online. If anyone finds a link, PLEASE let me know!
Happy reading, listening, viewing
Thursday, February 18, 2010
Those Repetitive (OCD?) Things That Drive Us Crazy
Kids with autism and other sensory impairments often develop repetitive behaviors. Some of these activities can become problematic in the home, school, or community setting. Some can even be dangerous to the child or those around him.
I could draw up a rather extensive list of the types of activities I have encountered over the years: lining up toys, sifting small objects through the fingers, looking at things at odd angles out of the corner of their eyes, spitting (and/or flicking spit - ugh!), screaming, eating non-edible items, and on and on.
Or I could ask those of you who live with a person who has autism to add to the list. I think we'd find a very, very long list with many commonalities and also many chosen behaviors or activities that are highly unique in nature. How many of you know a child who LOVES water play? What about a fascination with trains, doors, light switches, mirrors, Disney movies or Sesame Street?
I work with a young man now who has an intense fascination with bar code stickers and can't resist soda vending machines. I have heard recently about another young man who is repeatedly tearing his clothes. I am sure you get the idea.
What tends to happen is someone (other than the person with autism) decides the activity or behavior is interfering with "normal" functioning. But let's be careful. It might be that the behavior is different or not exactly socially appropriate, but unless it is truly dangerous in some way - such as jumping from a moving vehicle when it passes a vending machine or convenience store that is likely to have such a machine - I no longer am in such a hurry to remove these activities from the person's repertoire.
An example from my personal past: "J" was a cute, pleasant boy who was highly verbal and full of energy, almost always smiling and completely charming. He had gone through quite a few "obsessions" in his young life - including Matchbox cars, lightswitch boxes, laundry baskets, and clocks, among others. His family had been very tolerant and accepting, tending to add to his vast collection of all these items on a regular basis. As we gradually increased his level of inclusion in regular classes during his early elementary years, we (the IEP team of teachers, therapists, administrators and parents) decided that his newest fascination with jumpropes had to be eliminated. It is embarrassing to me now, but we were all in agreement that his habit of carrying a jumprope with him from room to room was somehow interfering with his learning, or maybe his social acceptance, or what????
Believe me, in looking back after all these years, this boy was learning ALL the time and everyone loved him. If those jumpropes were a problem, I am afraid it was the IEP team that owned the problem! But we didn't look at things that way back then, and the jumpropes became a major issue.
We came up with an ingenious plan to ever so slowly make that jumprope grow smaller, cutting a few inches from one end each day till there was nothing left. "J" played along with us, and seemed quite content, happily carrying the shrinking rope through the halls at school until it became so small that waving it in front of him no longer gave him the same pleasure or sense of security that it had in the beginning. And at just about that same time, his success in the school mainstream took a serious turn for the worse.
You see, "J" - whose autism is relatively mild - was living with a tremendouse amount of anxiety, and that jumprope was working better than any medication the pharmaceutical or psychiatric community might have come up with. We took it away, and he fell apart. Waving a jumprope might not be what other kids in the school were doing, but with the right intervention on our part as professionals, we surely could have helped his classmates accept that "J" needed that extra comfort item in order to be happy in school. After all, the kids loved "J" and wanted him to be happy; the rope was bothering US, not them!
Ripping up clothing or throwing a TV to the ground would fall in another category and would need attention before the added costs get out of control. Same for those behaviors that might hurt someone. We can't just ignore, or accommodate ALL preferred activities. I will attempt to address these more serious behaviors in a future posting.
Adding a meaningful communication system to the picture can make a huge difference. If we can find a way for the person with autism to give us some input and insight, maybe we can find a way to work together to choose which behaviors can be tolerated and which need to be replaced. If the child starts to sense that we are sincere in our desire to help and not just imposing the desires of the adults in his life, we can move forward in a spirit of cooperation and respect.
A reliable way of asking and answering yes/no questions is a good place to start: "Do you REALLY need that rope with you right now?" "Do you understand why we don't want you ripping your clothes?" Or maybe pointing to answers from a choice of two, three or four possible options might be possible. The idea is to involve the child in making the plan before changes. "J" was very young, but very wise, and should have been consulted before we took away his jumprope.
I visited "J" in his home several years later. He was thrilled to see me, and happily showed me his vast collection of clocks and other things. He never stopped smiling as he waved his newest jumprope and said to me, "Remember when we tried to get rid of my jumpropes? That sure was silly!" I had to agree.
Thanks for being one of my best teachers ever, "J!"
I could draw up a rather extensive list of the types of activities I have encountered over the years: lining up toys, sifting small objects through the fingers, looking at things at odd angles out of the corner of their eyes, spitting (and/or flicking spit - ugh!), screaming, eating non-edible items, and on and on.
Or I could ask those of you who live with a person who has autism to add to the list. I think we'd find a very, very long list with many commonalities and also many chosen behaviors or activities that are highly unique in nature. How many of you know a child who LOVES water play? What about a fascination with trains, doors, light switches, mirrors, Disney movies or Sesame Street?
I work with a young man now who has an intense fascination with bar code stickers and can't resist soda vending machines. I have heard recently about another young man who is repeatedly tearing his clothes. I am sure you get the idea.
What tends to happen is someone (other than the person with autism) decides the activity or behavior is interfering with "normal" functioning. But let's be careful. It might be that the behavior is different or not exactly socially appropriate, but unless it is truly dangerous in some way - such as jumping from a moving vehicle when it passes a vending machine or convenience store that is likely to have such a machine - I no longer am in such a hurry to remove these activities from the person's repertoire.
An example from my personal past: "J" was a cute, pleasant boy who was highly verbal and full of energy, almost always smiling and completely charming. He had gone through quite a few "obsessions" in his young life - including Matchbox cars, lightswitch boxes, laundry baskets, and clocks, among others. His family had been very tolerant and accepting, tending to add to his vast collection of all these items on a regular basis. As we gradually increased his level of inclusion in regular classes during his early elementary years, we (the IEP team of teachers, therapists, administrators and parents) decided that his newest fascination with jumpropes had to be eliminated. It is embarrassing to me now, but we were all in agreement that his habit of carrying a jumprope with him from room to room was somehow interfering with his learning, or maybe his social acceptance, or what????
Believe me, in looking back after all these years, this boy was learning ALL the time and everyone loved him. If those jumpropes were a problem, I am afraid it was the IEP team that owned the problem! But we didn't look at things that way back then, and the jumpropes became a major issue.
We came up with an ingenious plan to ever so slowly make that jumprope grow smaller, cutting a few inches from one end each day till there was nothing left. "J" played along with us, and seemed quite content, happily carrying the shrinking rope through the halls at school until it became so small that waving it in front of him no longer gave him the same pleasure or sense of security that it had in the beginning. And at just about that same time, his success in the school mainstream took a serious turn for the worse.
You see, "J" - whose autism is relatively mild - was living with a tremendouse amount of anxiety, and that jumprope was working better than any medication the pharmaceutical or psychiatric community might have come up with. We took it away, and he fell apart. Waving a jumprope might not be what other kids in the school were doing, but with the right intervention on our part as professionals, we surely could have helped his classmates accept that "J" needed that extra comfort item in order to be happy in school. After all, the kids loved "J" and wanted him to be happy; the rope was bothering US, not them!
Ripping up clothing or throwing a TV to the ground would fall in another category and would need attention before the added costs get out of control. Same for those behaviors that might hurt someone. We can't just ignore, or accommodate ALL preferred activities. I will attempt to address these more serious behaviors in a future posting.
Adding a meaningful communication system to the picture can make a huge difference. If we can find a way for the person with autism to give us some input and insight, maybe we can find a way to work together to choose which behaviors can be tolerated and which need to be replaced. If the child starts to sense that we are sincere in our desire to help and not just imposing the desires of the adults in his life, we can move forward in a spirit of cooperation and respect.
A reliable way of asking and answering yes/no questions is a good place to start: "Do you REALLY need that rope with you right now?" "Do you understand why we don't want you ripping your clothes?" Or maybe pointing to answers from a choice of two, three or four possible options might be possible. The idea is to involve the child in making the plan before changes. "J" was very young, but very wise, and should have been consulted before we took away his jumprope.
I visited "J" in his home several years later. He was thrilled to see me, and happily showed me his vast collection of clocks and other things. He never stopped smiling as he waved his newest jumprope and said to me, "Remember when we tried to get rid of my jumpropes? That sure was silly!" I had to agree.
Thanks for being one of my best teachers ever, "J!"
Friday, January 8, 2010
When you can't talk . . .
Throughout my life, I have had frequents bouts of laryngitis. My throat was definitely my weak spot as a child, and this continued well into adulthood. I often visited a doctor because the pain was so great, but it was never diagnosed as either tonsillitis or strep throat. What most typically happened was that after a few days of intense pain (mostly when attempting to swallow), I would just lose my voice. The pain was gone by then, but naturally the inability to speak drew attention to my discomfort. I always found that interesting - people hadn't been aware of the pain I was in just a day or two earlier, but once the voice was gone, I received lots of sympathy for my condition.
Interesting, too, that my chosen profession - teaching - usually requires one to be able to speak in a voice loud enough to be heard. But my specialty had become working with kids who themselves were mostly unable to speak, and so I could usually continue to work even if I was left with no voice at all. This presented yet another opportunity for me to personally learn some very valuable lessons.
First I learned that if I spoke in a quiet voice (by necessity in this case), those around me became much quieter as well. In my classroom, if I was quiet, there was a noticeable change - for the better - in the entire environment. The kids seemed to prefer quiet surroundings, even those who had a tendency to scream or make loud noises when things weren't going their way. In our quiet classroom with a whispering teacher, everyone became quieter and calmer. I tried to remember to keep my voice low and calm even when it was working just fine.
I also learned the power of the written word. So many of my kids who were on the autism spectrum were fascinated with letters and words. They loved it when I wrote what I wanted to say rather than speaking out loud. I learned to use this in one particularly challenging teaching situation where I was working with a group of very young students who needed my constant attention and direction to do even the most basic of academic tasks, while at the same time trying to keep an older, more advanced student engaged in work that was at his level. "R" could speak, and do some quite challenging school work, but was just as needy as the younger ones when it came to adult attention. I found it worked quite well for all of us to be sitting around a small table if I wrote messages back and forth to "R" while talking and interacting with the younger ones. If I hadn't been able to interact with "R" in this way, he would not only be unable to stay at his work, but he would have been constantly interrupting my work with the younger kids - and of course providing way too much in the way of distraction for them. It wasn't easy for me, since I had to be ready to read anything that "R" wrote for me to read, then write back to him almost immediately to get him started on his next task, without losing the attention of the younger kids or the focus of what that particular lesson was about. But it worked - multi-tasking at its finest!
By far the most important lesson I learned, one that still serves me well in my present day interactions with people who are unable to speak, was the utter frustration that comes with being unable to interact with other people. By definition, people with autism have problems with both communication and social interaction. Based on what I have experienced during bouts of laryngitis, I think I have some insights that might be worth sharing.
When I first started learning about autism, I defnitely made two very serious incorrect assumptions. I "swallowed" the idea that most of these individuals were also cognitively disabled to some degree, and I thought most of them spent much of their time in a world of their own - by their own choice. I certainly wasn't alone in my thinking, but I am now so firmly convinced that I was wrong, that I feel obligated to beg forgiveness from my early students and to beg the rest of you to give up both notions immediately (if they are still present in your thinking) and never, ever make that mistake again. I know it's hard for us humans to learn from the experience of others, but I implore you to believe me on this. These people are both intelligent AND social.
Consider this: I attended one of the early conferences devoted entirely to the relatively new phenomenon we have been calling Facilitated Communication. Most of those in attendance who were using the method were already adults. They had gone through their childhood years with essentially no means of communication, so the whole idea of conversing with others was new to them. Most people with autism are also dealing with a variety of sensory and/or motor issues that make "normal" living additionally challenging. Being in large crowds is just one example of a situation where problems often occur, and many families avoid travel, stores, sporting events and such largely because they have learned that these situations are extremely stressful for the person with autism - whether it be the sights, sounds, smells, or whatever that might be making things just a little too much to endure. At this conference --- in a modern, busy hotel --- in a very large room filled with round tables, I was blown away to watch as some 20 to 30 individuals sat quietly, each with their own facilitator, spelling out questions and answers in the most amazing roundtable discussion I have ever witnessed. And what did they want to talk about, now that they finally had a voice? Overwhelmingly they wanted to express their ideas, concerns, questions and dreams about friendships, dating, marriage and their future in the speaking world.
You see, not being able to talk has a way of making one appear to be uninterested in social interactions. I found that out firsthand. When I had laryngitis and could only speak in a whisper, it was definitely NOT fun to be out in a crowd. Even if my throat was not hurting, it was an effort to "speak" loud enough to be heard. If I were at a party, with many people talking at the same time, it was just about impossible to add anything to a conversation. When I did try to speak, I immediately became uncomfortable when the people around me became so unusually quiet - just to let me get my thoughts out. It simply wasn't worth it, and I preferred to be alone, at home, doing solitary things.
On one particularly memorable occasion, we were at a restaurant with friends. This time my voice was completely gone, and even whispering wasn't working. The idea of going out for breakfast had not been part of a plan; it just happened sponaneously after church, and I didn't really give much thought to the problems my temporary "disability" might cause.
We were with people we knew well - members of our church, all with kids around the same ages as ours, and all of us had been members of the same bridge group for many years. A very comfortable social situation, UNLESS you can't speak. Everyone had lots to say, and I was OK with just listening - except that every now and then I had something I thought was worth adding to the conversation. At one point, I reached into my purse for paper and a pen. Immediately there was silence as everyone at the table looked in my direction to see what I was doing, and then waited to hear what I had written. Midway through my efforts, I felt totally foolish - nothing I might have to say was worth all that! I laughed it off and gave up. That particular incident happened at least eight years ago and was memorable enough that I have never forgotten. When you can't talk, socializing isn't much fun. And even if you have an alternative means of communication, the effort it takes often doesn't seem worth it. Being "different" isn't fun and can certainly lead one to prefer being alone.
My experience at the FC roundtable discussion helped me understand why those in the deaf community often prefer to be among others who sign. It also showed me how important it is for the rest of us to respect the needs and wishes of those who use alternative means of communication. Whatever those means might be, they should be available at all times, in all settings. And what these people have to say should be treated with the untmost respect - a great deal of effort goes into putting their thoughts "out there" - what an insult it would be if what they are saying is dismissed as unworthy or invalid.
If you have followed the history of FC since its introduction some 20 years ago, you know that much of what has been said about the method is negative. Think about it, if you were the one spelling out your thoughts on a letter board or keyboard, only to have people roll their eyes or quickly dismiss what they are witnessing as a "hoax" - how long would you stay at it? Would you even try if you knew this was likely to be the outcome? What if you were dependent on a certain facilitator and that person was transferred to another position and no longer available to you - what would happen to your interest in being sociable? Think about it. I have been doing just that for many years now. Let's just move on and do what is right for these amazing people.
Interesting, too, that my chosen profession - teaching - usually requires one to be able to speak in a voice loud enough to be heard. But my specialty had become working with kids who themselves were mostly unable to speak, and so I could usually continue to work even if I was left with no voice at all. This presented yet another opportunity for me to personally learn some very valuable lessons.
First I learned that if I spoke in a quiet voice (by necessity in this case), those around me became much quieter as well. In my classroom, if I was quiet, there was a noticeable change - for the better - in the entire environment. The kids seemed to prefer quiet surroundings, even those who had a tendency to scream or make loud noises when things weren't going their way. In our quiet classroom with a whispering teacher, everyone became quieter and calmer. I tried to remember to keep my voice low and calm even when it was working just fine.
I also learned the power of the written word. So many of my kids who were on the autism spectrum were fascinated with letters and words. They loved it when I wrote what I wanted to say rather than speaking out loud. I learned to use this in one particularly challenging teaching situation where I was working with a group of very young students who needed my constant attention and direction to do even the most basic of academic tasks, while at the same time trying to keep an older, more advanced student engaged in work that was at his level. "R" could speak, and do some quite challenging school work, but was just as needy as the younger ones when it came to adult attention. I found it worked quite well for all of us to be sitting around a small table if I wrote messages back and forth to "R" while talking and interacting with the younger ones. If I hadn't been able to interact with "R" in this way, he would not only be unable to stay at his work, but he would have been constantly interrupting my work with the younger kids - and of course providing way too much in the way of distraction for them. It wasn't easy for me, since I had to be ready to read anything that "R" wrote for me to read, then write back to him almost immediately to get him started on his next task, without losing the attention of the younger kids or the focus of what that particular lesson was about. But it worked - multi-tasking at its finest!
By far the most important lesson I learned, one that still serves me well in my present day interactions with people who are unable to speak, was the utter frustration that comes with being unable to interact with other people. By definition, people with autism have problems with both communication and social interaction. Based on what I have experienced during bouts of laryngitis, I think I have some insights that might be worth sharing.
When I first started learning about autism, I defnitely made two very serious incorrect assumptions. I "swallowed" the idea that most of these individuals were also cognitively disabled to some degree, and I thought most of them spent much of their time in a world of their own - by their own choice. I certainly wasn't alone in my thinking, but I am now so firmly convinced that I was wrong, that I feel obligated to beg forgiveness from my early students and to beg the rest of you to give up both notions immediately (if they are still present in your thinking) and never, ever make that mistake again. I know it's hard for us humans to learn from the experience of others, but I implore you to believe me on this. These people are both intelligent AND social.
Consider this: I attended one of the early conferences devoted entirely to the relatively new phenomenon we have been calling Facilitated Communication. Most of those in attendance who were using the method were already adults. They had gone through their childhood years with essentially no means of communication, so the whole idea of conversing with others was new to them. Most people with autism are also dealing with a variety of sensory and/or motor issues that make "normal" living additionally challenging. Being in large crowds is just one example of a situation where problems often occur, and many families avoid travel, stores, sporting events and such largely because they have learned that these situations are extremely stressful for the person with autism - whether it be the sights, sounds, smells, or whatever that might be making things just a little too much to endure. At this conference --- in a modern, busy hotel --- in a very large room filled with round tables, I was blown away to watch as some 20 to 30 individuals sat quietly, each with their own facilitator, spelling out questions and answers in the most amazing roundtable discussion I have ever witnessed. And what did they want to talk about, now that they finally had a voice? Overwhelmingly they wanted to express their ideas, concerns, questions and dreams about friendships, dating, marriage and their future in the speaking world.
You see, not being able to talk has a way of making one appear to be uninterested in social interactions. I found that out firsthand. When I had laryngitis and could only speak in a whisper, it was definitely NOT fun to be out in a crowd. Even if my throat was not hurting, it was an effort to "speak" loud enough to be heard. If I were at a party, with many people talking at the same time, it was just about impossible to add anything to a conversation. When I did try to speak, I immediately became uncomfortable when the people around me became so unusually quiet - just to let me get my thoughts out. It simply wasn't worth it, and I preferred to be alone, at home, doing solitary things.
On one particularly memorable occasion, we were at a restaurant with friends. This time my voice was completely gone, and even whispering wasn't working. The idea of going out for breakfast had not been part of a plan; it just happened sponaneously after church, and I didn't really give much thought to the problems my temporary "disability" might cause.
We were with people we knew well - members of our church, all with kids around the same ages as ours, and all of us had been members of the same bridge group for many years. A very comfortable social situation, UNLESS you can't speak. Everyone had lots to say, and I was OK with just listening - except that every now and then I had something I thought was worth adding to the conversation. At one point, I reached into my purse for paper and a pen. Immediately there was silence as everyone at the table looked in my direction to see what I was doing, and then waited to hear what I had written. Midway through my efforts, I felt totally foolish - nothing I might have to say was worth all that! I laughed it off and gave up. That particular incident happened at least eight years ago and was memorable enough that I have never forgotten. When you can't talk, socializing isn't much fun. And even if you have an alternative means of communication, the effort it takes often doesn't seem worth it. Being "different" isn't fun and can certainly lead one to prefer being alone.
My experience at the FC roundtable discussion helped me understand why those in the deaf community often prefer to be among others who sign. It also showed me how important it is for the rest of us to respect the needs and wishes of those who use alternative means of communication. Whatever those means might be, they should be available at all times, in all settings. And what these people have to say should be treated with the untmost respect - a great deal of effort goes into putting their thoughts "out there" - what an insult it would be if what they are saying is dismissed as unworthy or invalid.
If you have followed the history of FC since its introduction some 20 years ago, you know that much of what has been said about the method is negative. Think about it, if you were the one spelling out your thoughts on a letter board or keyboard, only to have people roll their eyes or quickly dismiss what they are witnessing as a "hoax" - how long would you stay at it? Would you even try if you knew this was likely to be the outcome? What if you were dependent on a certain facilitator and that person was transferred to another position and no longer available to you - what would happen to your interest in being sociable? Think about it. I have been doing just that for many years now. Let's just move on and do what is right for these amazing people.
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