Friday, May 28, 2010

Resistance - # 3

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.


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!

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!