Reflection and Mindset
One of the things I found most helpful in learning to work with individuals with apraxia was hearing my supervisor's perspective and reading the thoughts of many spellers about what is most important to them. When I first started working with this population, I felt unqualified. It was difficult for me to conceptualize building rapport without the body language that typically accompanies a conversation, and when I needed to adjust motor cues and prompts that were not working for that individual, I felt that what I was providing was insufficient and surely someone would know a better way. I constantly struggled with perfectionism and feeling like I had to have everything figured out, even though clients, their families, and medical professionals are still discovering so much about apraxia.
When spellers and their families were asked what they like most about their music therapist, Kari responded with "relationship", Lucy Cohen shared "Patience, presuming competence, joy, her beautiful voice and manner", and Nicolas Segrera spelled "I like everything about her (Whitney): her patience, understanding, and the way she makes her sessions more didactic". Abbey Gore also points out that Whitney is "kind and believes in me" and shares that she is "really pleased that more autistic individuals will have the opportunity to learn music." It is evident by their responses that the therapeutic relationship and one's kindness, patience, and understanding go a lot farther than always saying or doing the "right thing." Being confident in my ability to show patience, understanding, and respect to these clients and knowing that is what is most important changed my approach to our work together. Presuming competence, as mentioned by Lucy Cohen and later by Abbey Gore, is simply the perspective of knowing that individuals with apraxia are always capable of learning and achieving and that they want to be doing what their bodies are being asked to do.
When asked what they would like music therapists to know about working with spellers, Autumn and Kevin shared valuable insight. Kevin said to expect that responses from someone using AAC will take time and to be patient while they provide input and commentary, foregoing the initial agenda one may bring into therapy. Autumn added, "Just keep working on expanding ways to connect and communicate," and commented on how valuable it is that another adult, aside from parents, takes the time to listen to and connect with what their child has to say. Some other advice she shared included the "golden rule," always presuming competence, and that a lot of what her child says is not what she means. For herself and for anyone working with these individuals, Autumn says to "Always check yourself for assumptions. Check yourself, check yourself, and check yourself again, and even when you think you’re in the clear, then check again."
When asked the same prompt, Nicolas Segrera spelled, "We have a lot to give, but our bodies are hard on us. Please be patient with us and don't be misled by the dysregulation you might see." The bodies of spellers move without their conscious direction and control, meaning that if one interprets their body movements as indicating their inner feelings, they will be drastically mistaken. Taking the time to ask them how they are truly feeling and believing their words over their body is so important. Abbey Gore replied, "start by presuming competence" and "we are the same as all music students," speaking to her desire for respect and equitable treatment. On a lighter note, Kari answered, "Being able to laugh at yourself is super helpful -- love first act second." This emphasizes the previous point about leaving perfectionism behind and focusing on being a humble music therapist who does not take themselves too seriously for their clients. Lastly, Lucy Cohen brings to light how much music means to her by sharing, "Many of us live inside music. Like water, it is an atmosphere. For you to collaborate and unleash this communication is not unlike spelling. You are angels. Thank you."
Lastly, learning how to facilitate with spellers has changed my outlook on being a music therapist in general. I admire the determination of these clients to overcome their bodies and am honored to be apart of that process. Working with spellers also means learning about their personalities through their words, including their humor, music preferences (everything from Bob Marley to PINK to Tchaikovsky), and perseverance, and I am grateful to have gotten to know these individuals and their families so well over these past six months.
Thank you to all who participated in or supported this project, including my supervisor, Whitney Perry; survey respondents Nicolas Segrera, Lucy Cohen, and Kari; the Meraki Collective, the Music Therapy St. Pete team, and several other individuals and their families, including Abbey Gore!