Sunday, November 27, 2011

Behavior? Or unanswered question?

4D-RCS control loop basic internal structure.Image via Wikipedia
For at least the twelfth time in the last few years, I sat in a session today with one of my (many) clients who doesn't use speech, asking him if he might put his thoughts and reactions to the fact that we hadn't seen each other in two weeks (because I was away at the music therapy conference) into the music, and I was struck by the thought, "Geez, what if he has questions that he wants me to answer?"

I don't know whether anyone else ever wonders about this, so I'm throwing it out into the blogosphere, because it bugs me. 

All of us have questions, and when we're little kids we have about a million of them! And we ask our parents (and aunts and uncles, and any adult person, frankly) at least nine hundred thousand of the many gazilions of questions that happen to come into our excited little curious minds. clients who don't use speech can't do that! And who's to say they don't have a million questions of their own? Yet, how do you ask all your questions when talking isn't your thing?

So, as I've given this some thought, my theory is that the folks I work for are sort of forced to come up with other ways to get their questions answered. And those ways may involve doing some unusual things- maybe we could call them experiments- although more likely we call them "behaviors"- which often seems to imply "doing something that someone finds aversive, offensive or annoying and must attempt to stop".


Well, what if those "behaviors" and unexpected and odd things that this person is doing are really about asking questions that s/he needs to have answered? And what if instead of listening and collaborating to try to help figure out the question/answer, we're focusing on the fact that the "behavior" must go? 


Titan and Nate said...

I am non verbal (Autistic), until meeting my partner I had no way to communicate, my partner taught me to use communication pictures to communicate and finally last year we got a second hand AAC device through the generous help of friends so that now I can speak, though I am still learning and it takes a very long time. Not many have the patience for this though. Before that I had a lot of challenging behaviours and most of them were me communicating something but others just couldn't see I was communicating distress or wanting to know something so I would get abused to stop these behaviours which only made them worse. With a speech device now I don't have as many challenging behaviours as before though they are still there because of sensory issues or other things that are overwhelming to me. I had so many questions all my life that I couldn't ask anyone and still don't have the answers to, now I can ask them but still have trouble asking because of the way I was treated before being with my partner, the fear is now ingrained and we are trying to overcome it. I think even if someone had taught me how to say just yes and no in some way as a child even that would have helped, but most the time people don't think that is possible as they did with me, everyone thought I just couldn't communicate but no one thought to teach me a way to communicate until my partner. I hear this still happens a lot now, it makes me sad to hear. Even with my speech device it is hard for me to get the right words out because of my cognitive issues, my partner has to help me with a lot of what I am trying to say but I am not always understood. It is really frustrating and hard to be trapped without speech. I don't think in words so expressing myself can be really difficult. Thanks for this post.

Laura Cousins said...

Roia, I find this post very moving, as well. Especially with such a reply from Titan and Nate. I have recently joinerd the local branch of the Total Communication Network who, as their name suggests, believe that everyone can and does communicate - the only problem lies in our understanding how best to go about helping them.

As Titan and Nate said, a simple "Yes" and "No" could make such a huge difference in a person's life.

Now I fall to wondering how, in practical terms, music can be used to express questions as well as emotions. I am wondering whether people who do not use speech - or people who have STOPPED using speech - give up wondering about how to get their questions answered when it is hard enough just to get anything much other than their basic needs met.

I blogged on this topic. May I please post the link? I would love your comments.

Laura Cousins said...

Thank you again Roia - here is the post I meant:

Roia said...

@Titan/Nate Thank you so much for sharing your experiences (and, in the process, kindly validating my perceptions of the situations I often find myself in when I'm working). I am honored.

I often feel a terrible powerlessness as I interact with the people I support, which I think is partly picking up on the feelings of my clients and partly from my own wish to be of service. There's often a sense of "This is not something I can fix or 'make better' in some way." I struggle with it so much, that it has come up at LEAST once or twice a year in my own supervision over the past, oh, almost 18 years!

As much as there is great value and meaning in acknowledging the challenges and being with someone who is struggling and feeling powerless- even for the one hour of the music therapy session- it's hard. Yes, I guess that's really what it boils down to- it's hard.

@Laura I've never heard of this Total Communication Network. I'll have to check it out. Thanks!

I think, having said what I just did (above), the act of inviting (out loud, I mean) questions from folks who don't use speech as their main communication mode and then listening with the intent to understand has been the way I've used in sessions. In other words (and my gosh, I've got an awful darned lot of words to say today) I let people know that I presume they may have questions for me and that I'll be making a point of trying to do my best to hear what those questions/concerns might be.

I think when we are fully engaged in the music-making process (and I mean within the context of the therapy relationship, because that's my experience) there is an element of questions asked and possible answers presented. It happens fairly infrequently in my own work, but when it does happen, it's powerful and I feel it very strongly. I'm guessing my clients do also, and the intensity of the connection is probably *why* it happens so infrequently.

Thank you, again, all of you, for such thought-provoking sharing/comments!