Communication and Interaction through Music therapy with females with Rett Syndrome:

Cochavit Elefant

May, 2001

In this presentation I will talk about different ways of promoting and enhancing communication and interaction with the RS population. Although the presentation was published as "Practical use of music therapy for communication" I promise it will be practical, because we all have the tools to communicate and to interact. We just need to know how to do it.

I will show many video samples throughout the presenation and at the end I would like to have an open dialogue and questions concerning music in the life of the RS population.

For the past 12 years I have been working with this special population. Not one at a time, but normally, 5-7. So I have come to know them quite well and in fact, can't live without them.

One time though, last September, I vowed (just for a moment) that I will never work with them again. It was one day before my departure to Denmark (to the university where I am studying for my PhD). I was putting together my latest materials of my research to show my advisor and was extremely confused. I had just discovered some new things in the research, I was excited about it and thought that my research will now take a new form, but I also knew that I will never finish my PhD if I kept discovering things. So, I wasn't in the best of mood, but was looking forward to the evening because one of the girls who participated in my study was having a 12th birthday party (Bat Mitzva) and I knew I would meet there 4 other girls with RS who participated in my study. So that gave me a great feeling. I hadn't worked with them for 10 months since I finished the research, but from time to time went into their classrooms to say hello.

When I came to the party, I walked over to the birthday girl. She saw me and immediately shut her eyes. I thought that this was unusual for someone who had known me for 6 years, but figured she was probably confused with all the people around her. So I quickly went to say hi to another girl. She looked at me, turned aroumd and walked away. The third girl, looked at me and pushed me away, and the forth girl laughed (when she saw me) and turned her back to me. I felt lousy!!! I went and talked to their parents and from time to time I saw the girls glancing at me, but nothing beyond that. The turning point occured when the birthday girl's mother asked me to sing one song for her daughter. I was kind of hesitant as I don't like to perform in big crowds and besides, I didn't have my guitar.

But ofcourse, the mother convinced me to sing one song. I sat next to the birthday girl who could care less about me that moment and with that feeling I began singing one of her favorite songs. A little bit into the song she looked at me and gave me a smile and towards the end of the song her head was leaning on my shoulder and she had tears in her eyes. Of course everyone wanted me to continue singing and by the end of the second song all four girls were on my lap or behind my back and every time I stopped singing they tapped on my legs and on my back ( asking for more). They were smiling and laughing on the right spots in the music and moving to the beat of the music. By now the crowd were all choking and crying and the girls and I went into our own intimitate and familiar world of music.

What an atmosphere was in the air!

From this incident I learnt that the girls were maybe angry at me. I had seen them 3 times per week for 8 months during the period of the research (and before that they had indvidual music therapy sessions with me), then I left them.

I do believe they recognized me when I came to the party. Their reaction to me was quite negative and strong. I left that evening filled again, but ofcourse with lots of guilt feelings.

So, this experience was a definately strong emotional one. The girls managed to communicate it very well to me. This is what we will talk about today and this is what this conference is all about "communication".

How do we built meaningful communication with this population? Let me ask it differently: How do you and I built meaningful communication with other people? This can only happen after trust and rapport has been established between two people . Of course we communicate with people all the time, but it is not always meaningful and satisfying on an emotional level.

We tend to say that through musical channels, females with RS can communicate and express their feelings. But the music alone cannot do it. There needs to be a person behind the music, a messanger, a facilitator. The communication occurs only when there is: the therapist (or caretaker) the RS female and the music. Ofcours music alone can provoke emotions, but there needs to be a person to acknowledge the feelings and to contain the emotions provoked by the music in order for it to be meaningful.

This is very similar to the mother (or caregiver) infant interaction (Stern, D.) when the mother sings to her baby and in her singing she includes her own emotions and feelings during that particular moment. So if she is upset about something, it will come through in her singing and the same if she is happy or depressed.

She is also influenced by her babies response. She may reflect her baby's emotions into the singing. The singing has meaning. The baby learns about his caregiver and about the environment through the singing. The caregiver learns about the baby through his/her response.

The baby is extremely sensitive to the quality of the singing, breathing and holding.

This happens on an unconcious level, but nevertheless, it has a big influence on the babie's emotional development.

The RS girls at this point develop equal to the typical baby.

They are extremely sensitive to the quality of the music and to the person who is behind the music. She knows when she is being communicated to.

But this doesn't mean that she doesn't like to hear taped songs or videos, of course she does. But this is a different type of listening and is important as well.

I am really talking about two levels of listening to music:

1) The first one is on a receptive level.

She may listen to the music and enjoy it or relax to it. Even then, notice what type of music she prefers listening to. Usually it is good music with interesting musical elements to it.

2)The second type of listening is one that is on a more interactive/communicative level.

During this level, she can express her emotions and will have a partner to share those emotions with.

This is where the sensitive therapist or caregiver comes in (just like the sensitive mother singing to her baby). The therapist is attuned to her.

The music becomes meaningful. The music can be either structured music, such as songs (similar to the songs in my study and ofcourse they should be age appropriate songs) or it could be improvisatory music, music that is made up on the spot.

Giving the RS population the place to express herself is extremely important. The therapist needs to acknowledge the emotions or mood her client may be in by interpreting and reflecting through the musical mode. Expressing their emotions will result in learning opportunities.

In order for learning to take place there must be this meaningful interaction I have spoken about.

*video Racheli

But then, we should take it one level higher.

It isn't enough for our Rett population to stay in this mother-baby interactive stage.

A typical baby, will grow, develops normally and starts demanding of his surrounding to be treated accordigly. He/she won't let his mother or father feed him, hold hands when he/she wants to run or climb, etc. He is going towards his independence.

The typical baby has signals and codes we quickly learn to read and understand, but with the Rett population it is much harder. She has no way of showing their wants and needs (or maybe she does, and we don't know how to read her).

We don't have hand gestures or verbal communication as the typical child will have.

If we as therapist believe that the girls are to stay in that baby stage (cognitively), that is exactly where they will stay.

If we believe that there are learning channels not yet discovered, we will find the way to discover those channels.

If we believe those channels exists, so will she.

Music therapy is such a motivating mode and through it, enabels the therapists to find those undiscovered channels.

Through music we can help build their confidence by providing many successful opportunities.

With many successes comes the confidence and the urge to become independent. Just like the typical child.

When building opportunities it is important to keep in mind that our Rett populaton will only cooperate when the activity is meaningful and interesting to her. Ones they have mastered many different opportunities, they will then be open to new ones.

F.ex. in my study, I was interested to see whether the girls chose intentionally,but didn't focuse on their hand use. What I found out was that several of the girls began using their hands when selecting.

Choosing songs was very meaningful for them.

They had a good reason for using their hand.

As I saw that they were using their hands, I tried to reinforce them to use their hand.

The importance of this is, that the girls initiated hand use, because it was for a good reason, then I took the opportunity to try and increase the use of their hands.

The same goes for their delayed reaction. Letting her know that you are there for her and that she can take her time, will reduce her anxiety level. The more she has opportunities and the more she practices, the faster she will become, again only if it meaningful. During baseline in my study (when there was no music), her choice became delayed. Ones the music was applied she was quicker than the lightening.

I would like to show a few videos on how the interaction beween myself and the girls is built, and how I used the relationship we had built in promoting learning.

*Videos:

We have many Music therapy goals when working with the Rett Syndrome population such as:

-Maintain and maximize function

-Increase the level of awarness

-Increase responsiveness level

-Increase communication.

- increase purposeful hand use

- elicit vocalization.

- increase focusing, attention and eyecontact.

- provide opportunities in choice making.

- relaxation and calming.

- express inner feelings

- pure fun and enjoyment

All of the above can only take place when this meaningful interaction has occured.