CJ Shiloh has been very blessed to get to know Paula Durbin-Westby over the past few years. She is a brilliant mind. Here is her interview with Paula.
- Have you played music your entire life?
My mother says, “When you were four, I gave you piano lessons, because you had been bugging me for YEARS.” I don’t know why she waited until I was four! I would come home from school and run to the piano and start playing the piano without even taking off my coat. My mother says I would play until dinner time, at which point she would have to get me to stop. I have a Bachelor of Music degree in organ performance and am a choir director and organist. Depending on the music, I direct the choir from the organ, or the choir sings a capella with me directing. I have directed handbell choirs when I have had a chance. Sadly, not all my workplaces have handbells. Handbells and choir chimes are an excellent way of involving people who do not have a lot of musical training but love music. I have started singing with a regional choir and have been selected to be a soloist in programs over the past several years. In my current position, I also get to play the upright bass, bluegrass style! I will be playing the bass in a musical at the local arts center this winter. Recently I participated in an intensive gospel choir workshop. So, there’s always something new to learn.
- What were your first experiences with music, as a child, and how did these experiences affect your sensory integration issues?
I once wrote a poem about English being my second language. Music was my first. I liked instrumental music better than music with words. Those songs children learn? I had a hard time remembering the words. On the other hand, I knew all the notes in the complicated pieces my mother played on our piano. I did not play them but recognized them like familiar friends. I think I had trouble with the language in songs until I was in about third grade. Then my mother bought Between the Buttons by the Rolling Stones (1967) and I learned all the lyrics. I can still sing most of them without even thinking about it. It’s an awesome record! Listen to it! At the same time I was wanting to play the Pathétique Sonata by Beethoven, but I had to wait a few years! When I was in 6th grade, my brothers and I had a band with a few friends. I was played the guitar and sang, my friend was on guitar, one of my brothers was drummer; the other played the sax and sang, and we used rhythm instruments, and had various personnel in and out of the band. By “personnel” I mean other friends in 4th through 6th grades. Most of them did not last because they had to put up with me being bossy, and it probably was not that fun for them. Apologies…. If we needed piano, my mom played, but if we were performing (we did a program at school) we made her play behind the curtain so that it would look like only children were playing.
Music is one way that my senses are more integrated. I do have trouble, like many Autistic people do, with doing more than one thing at a time, such as seeing and hearing. When I do not know a piece very well, initially I can either listen to what it sounds like or read the notes. Once I have learned a piece I can do both more easily, and, of course, the more I practice something I know, the better it gets. Because it integrates multiple sensory modalities, I music can promote sensory integration in a very practical way. Music is the one thread in my life that remains the same, or that gets better and better. Many things change, and I can say that I really do not like change!, but there is always music. It is like breathing, or eating, and sometimes seems more important than those.
I have dyspraxia, which is motor uncoordination. It is not always noticeable to anyone else, but I can easily bump into things or twist my ankle, things like that. Oddly, I was always really good at catching balls when I was a child, and I think that is because I could visualize the trajectory and know where the ball would be. Non-ball sports? Not very good at those! I really like how I can play the organ, which involves playing with hands and feet, sometimes with hands on two different keyboards or switching between keyboards and playing the pedals with both feet at the same time. Yet, at church, every time, and I mean every time, I go up to the communion rail, I have to think very carefully about not tripping up, or down, the three stairs that lead up to the altar, or not bumping into the railing, or not whacking into one of the pews on the way down. I always touch the stair railing with my hand on the way up the stairs just to make sure I am lined up right so as to avoid bumping anything! When I play the organ, on the other hand, I am able to do all of those things together. I have to practice a lot to coordinate everything, and I always get up early on Sunday morning and practice because I get one more chance to remind my muscles of what to do and to read the notes one more time. Recently, something really amazing has happened, which is that I am able to play many pieces of music, one after the other, without hitting ANY wrong notes with my feet. For some reason, I don’t know what, I was not hitting any wrong notes. This made me stay at the organ for as long as I could play. And, the whole time, I did not play any wrong notes. I kept picking harder and harder pieces of music, pieces I had not looked at for two years, ones I did not know very well, and could not manage to play a wrong note! I hope this is a permanent improvement, but only time will tell. (I am updating this several years later to say that it is permanent! I do make mistakes, and so do all musicians, but it was definitely a musical growth spurt). I am not a virtuoso, but I make up for it by working hard and by bringing every bit of my love of music to the work I do. Last winter I gave a recital that was not “note perfect” but that people loved so much they asked me to do another one in the spring, which was also a lot of fun. Recently after church one Sunday, a man came up to me and said “Excellent music today. You’re outstanding.” Many years ago, another person told a friend of mine that with all the practicing I do, I probably make about $1.60 an hour (dividing my pay by the number of hours I practice). I don’t mind practicing that much. I want to persevere to be the best musician I can, and being Autistic, I can spend hours doing what I am focused on. (Note I did not use the words “perseveration,” “special interest,” or other words that tend to dismiss our strong needs to do something way more than a “typical” person would.)
I have synesthesia, which means that one sense does what would typically be true of another sense. In my case I see letters in color, and written music notes in color. The colors are associated with the notes in my mind, not that the printing changes color. On the keyboard, a C-flat is played by playing the B key. Since C is yellowish orange (as though there were a yellowish orange aura around the note), and B is violet blue, I used to play a lot of wrong notes when I had a C-flat. I then started coloring the C flat violet blue with a colored pencil and right away, I played the correct note. I read the color faster than I read the written note, and that my brain understands and puts color before written notes. I once tried coloring in ALL the notes on a new piece of music to see if it would make me play only right notes without practicing! That did not work! When I gave a recital last spring, I realized that one piece had some of those C-flats, and that a few other notes were problematic, and that I was just assuming that I would make mistakes. I didn’t like that, so ten minutes before the recital, I marked up the music with colors. I did not even practice again as it was ten minutes to show time! Result? I played it note-perfect for the first time in my life, “under pressure,” too!
The older I get, the better I am at playing music. The myth that someone is “too old” to learn an instrument, or even “too old” to get a job playing an instrument- it’s not true! If you have always wanted to learn to play an instrument, but people around you told you that you were too old, just do it! Please! Don’t deprive yourself because someone else thinks you can’t, or because you think you can’t. Maybe you won’t like it after all, but if you don’t make the attempt you will never know. For me, I think that music lessons as a child helped with many areas of life, including expression of things I could not put into words, physical coordination, and that inexpressible joy that makes life seem wonderful and interesting and full of possibilities.
- How do you view the potential of music performance opportunities, for children that are diagnosed with ASD?
In general, I think that music in itself is good for everyone, and for people on the spectrum, it can be a very freeing thing, a way to access our inner selves, a way to express ourselves, something we can do and feel a sense of accomplishment. I know that music therapy often has non-musical goals, and, as long as the musical reasons for doing music are not considered to be secondary to whatever is being taught through music therapy, I think it can be of great benefit. Please do not use music therapy as a way of “curing” autism! Also, please NEVER use music as a “reward” for accomplishing other goals. I am talking to parents, music educators, therapists and teachers in this comment. One of the worst situations I have heard about was how someone’s instrument was taken away from them as soon as staff learned that music was what the person loved the most. This music deprivation took place at the Judge Rotenberg Center, which has been cited by United Nations Special Rapporteurs for human rights violations. When it was discovered that Jennifer, a pianist, loved music, she was then only allowed to play her instrument if she accomplished nonmusical behavioral goals the staff set for her. This makes me ill whenever I think about it. Music is as central to people’s lives as their heartbeats. Music is a universal human right, which is one of the reasons The Musical Autist, with its goal of Equal Rights to the Fine Arts, has developed Sensory Friendly Concerts ™.
If anything, music can help us be in touch with all parts of ourselves. I do not believe there is “an autistic part” and a “non-autistic part” so that any accomplishments should just be seen as what they are- accomplishments- and not as some sort of indication that a person is becoming “less autistic.” In fact a person might also seem to be “more autistic” by doing music, if they become so passionate about it that, for example, they can’t take their coat off after school because they have to run to the piano and play the same song over and over! I love reading about music therapy and have considered taking courses to become a licensed music therapist, but I keep being drawn to other things, and more to my own performance and practice and teaching, so never have done it, but some amazing things can happen when music is brought into someone’s life in a meaningful way.
- With the advancement of communication technology there is great opportunity for autistic people to discover webpages such as The Musical Autist, to be a platform for self-advocacy and a locale for community and friendship. Do you believe there is a great need for this in the autism community at large?
I can’t say enough good things about communication technology, and about online opportunities for autistic people to connect. Music is one of those ways. If we can create sites like The Musical Autist, where people can share strong interests, it’s a good thing. I do think there is a need for sites, blogs, and online groups where people can share interests that are not only about being Autistic, but also about things we are passionate about, whether it’s music, art, engineering, collecting things, or other pursuits. I am very glad you are starting this blog.
Update: Since I did the original interview with CJ, I have started teaching more students. I started teaching in the 1990s but took off some time when my son was young. Currently, I teach piano and organ, and have had some students with disabilities including autism. I could say I teach adaptive music lessons but, really, all music instruction is “adaptive” for the person. No two people are alike. I have taught a few students who do not speak. One has started using Rapid Prompting Method for language-based communication, and it is so wonderful to see what he has to say. Some of my students have had injuries or other hand-based disabilities. I am not a physical therapist or music therapist but am able (and willing, whereas some teachers are not) to work with them to achieve their musical goals. It is so interesting to me that parents of the nonspeaking Autistic students knew they were interested in music. It was not too difficult to figure out. If a child (with or without a disability) picks out the musical instrument (toy or real) from all the other toys in the room, or turns everything into an instrument whether or not it is an instrument, they are interested! One parent wrote this recommendation for me: “My 10 year old son is non-verbal and has autism. Paula has worked with him for many hours with patience and kindness. She has a great sense of how to arrange an environment to make the child as comfortable as possible. She’s an amazing piano teacher!!”