Transcending Disability

Last Tuesday's preschool music therapy group turned out to be one of those pivotal sessions in which the children appeared to come out of their disability and into the music. I found myself wishing we'd had a video recorder on hand, just so that we could all relive the moments over and over, and marvel at what is truly inside each of these children.

Normally it is a group of 3 children, two girls and a boy. Today it was just the girls, one accompanied by her mother, one accompanied by both parents. In such a small group, the absence of one can be disconcerting (probably more to the therapist than to the child), so I was wondering what direction therapy might take today. Yes--out goes the loosely planned set of activities, and on to thinking on the fly. No problem. In 12 years of practice, I've learned just how important it is to be clinically flexible...you know, to be able to do "clinical backflips." :)

I'll describe the girls: Both these little girls have Rett Syndrome (RTT). In short, RTT is a neurological disorder caused by a mutation on the X chromosome. It robs the children (mostly girls) of hand usage, communication skills, other motor skills, and the list goes on (check out rettsyndrome.org for more information). What RTT DOESN'T do is rob these chldren of their personalities, their lovability, their desire to just be children. They are also, nearly without exception, remarkably responsive to music therapy, which makes them joys to work with. I might add that another common thread in children with RTT is their beautiful faces, and eyes that communicate everything their voices cannot. In my 12 years of practice, in which RTT became my unexpected specialty, I've worked with 13 girls (C. was my first girl after graduation, described in the post, "Tears, Healing and the ISO Principle). I must say that they have all been strikingly, sweetly beautiful. These girls are for sure no exception!

Now on to the session. After I made the mental shift from planning therapy for 3 children, I took a step back and looked at the girls. They were both in exceptionally good moods. Okay. Let's support that. Both girls, both ambulatory, appeared to want to move. Great. Let's capitalize on that. And what's this? Wow, they were interacting with each other! Lots of eye contact, huge smiles...okay, it's time to get down to business here! Following the tempo of their "dancing," I started the "Hello Song." The girls circled each other, made eye contact, smiled at each other. They ventured close to me and grinned. One of the girls batted wildly at the guitar, and was pleased when her action was rewarded with sound. YAY for purposeful hand usage! They both engaged with their parents, and there was some vocalization. Both responded to their names being sung by looking directly at me as I greeted them in song. We had the makings of a ROCKING session here! Basically, it felt no different than it does in a music class with typically-developing children.

Later in the session, we worked on songs using a voice output device that is activated by hitting a switch. I had pre-recorded the ending phrases to a song onto the switch, and the girls, in essence, by hitting the switch, were able to "sing" the song with me. This required motor skill, attending skill, and turn-taking. The motor part is normally the most difficult part for girls with RTT, but they were both amazingly accurate in their responses on this day. We also sang another song using the switch again, but this time we added the visual/cognitive element of picture symbols to identify parts of the song. Once again, they both responded with unusual quickness and accuracy. I was impressed at the fluidity with which they both were able to move to access the switch.

It all has to do with sensory integration. Movement, auditory stimulation, visual stimulation, tactile input; all crucial for the children's success. The girls were given the chance to move and explore at the very beginning of the therapy session. This gave them a whole array of sensory experiences. I am convinced that this impromptu mosh pit experience helped their nervous systems get organized enough to attend to the tasks I offered. In other words, rhythmic stimulation is good for balance and attention. Prolonged rhythmic stimulation has been shown to increase voluntary hand usage in girls with RTT, as well as to help them use their hands more purposefully. Singing, rather than speaking, is often beneficial for children with RTT. The result is a decrease in response time, because the music/lyric combination stimulates parts of the brain that are often underdeveloped, due to the nature of the disorder. The systematic application of multi-sensory music and music activities (which is what music therapy is) on this day was enough to help bring each child to a higher level of functioning; every activity was offered with the goal of challenging the girls, but not to the point of frustration. It is important to make each activity accessible and gradually increase the difficulty in order to facilitate that growth and change that we are seeking. Buoyed by the "rush" of music, they had no idea how hard they were really working. This was a session in which they truly transcended their syndrome. With just a few minor adaptations to accomodate the girls' motor needs, they simply became little girls, like any little girls, learning new skills, seizing the opportunity to grow and develop in the enjoyable container known as music.

Chalk one up for the power of music! Onward and upward. I can't wait to see what all my young participants are capable of over time. It is humbling, and an honor of which I am not worthy, to work with each one of them.

Stay tuned...