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!

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