CCPA Summer Series: Alexandra Bernas ‘19 HMS School for Children with Cerebral Palsy in Philadelphia, PA

CCPA Summer Series: Alexandra Bernas ‘19 HMS School for Children with Cerebral Palsy in Philadelphia, PA

Alexandra Bernas ‘19

HMS School for Children with Cerebral Palsy Philadelphia, PA

 

“Hello, band!” My supervisor Brad greets his students at Home of our Merciful Savior (HMS) School for Children with Cerebral Palsy. “Today we will play When The Saints Go Marching In, with Eddie as our conductor.” Eddie looks at the word “start” on his screen so his eye-gaze recognition device can say his chosen word. At that moment, Brad sings and plays his guitar. I improvise a basic keyboard accompaniment. The rest of the class plays tambourines, switchboards, drums, electric keyboards, chimes, and any instrument they could access from their wheelchairs. While playing, we all listen for Eddie’s cues to stop, play faster, or slow down.

 

Giving and responding to cues is natural in relationships between professional conductors and musical ensembles. However, for people with cerebral palsy, congenital brain damage prevents them from doing basic human activities such as walking, feeding oneself, and speaking. During my time assisting Brad and providing keyboard accompaniment at HMS, I learned that the location and extent of brain damage affects one’s ability to drive a wheelchair, chew food, and make micromovements that devices translate into spoken word.

 

HMS uses a variety of expressive arts therapies such as music to enhance cognitive and physical abilities in children with brain damage. In the conducting exercise, I witnessed principles I learned in Professor Boltz’s Foundations of Psychology. Through classical conditioning, the group associates each command word with the starting, stopping, or tempo change in the music. And through conformity, the students perceive and follow each other’s change in music-making behavior to maintain their sense of belonging to the group. In addition to enhancing their cognitive functions, the students worked on fine motor skills by moving their arms and hands to play musical instruments. With a new appreciation of the cognitive and physical skills required to make music, I now understand the importance of sessions focused on enthusiastic participation instead of technical accuracy.

 

Another important lesson I learned at HMS is the value of nonverbal communication. One of the first things I noticed about Brad was his effortless interactions with the students. When I asked Brad how he connects to them, Brad encouraged me to speak despite no guaranteed verbal response. According to him, since the students have limited movement and speaking abilities, we learn about them through keen observation and background context. For example, during a Musical MadLibs session, I noticed that Jordan, a usual contributor, was silent. I approached her and saw a pop-up window on her device preventing word selection. I asked her to place her hand on the mouse. After a few minutes of struggling to move her cursor, she successfully closed the window. I then told her what kinds of words Brad wanted. Since the device sometimes is not loud enough when voicing the student’s chosen word, I repeated the word so Brad could incorporate it into the song. The process of giving the student access to a means of communication, then relaying the message, made me realize how dependent children with cerebral palsy are. I sadly learned that they will be dependent on other people, even after they turn 21 and the government is no longer obligated to give them an education.

alexbernas

Though there is no cure for cerebral palsy, there is a way to prevent the condition from worsening. By teaching the students to communicate, we give the students personal agency, or in psychology jargon, an internal locus of control. This internal locus of control prevents depression in people with cerebral palsy, as well as improves their social relationships. However, communication goes both ways. While people with cerebral palsy need to work on expressing their thoughts, we as caregivers and music therapists need to learn to understand their unintelligible vocalizations and nonverbal behaviors. By doing so, society can become a magnified HMS band: inclusive, patient, cohesive, and sensitive to everyone in the ensemble.