Music Therapists- All About YOU- episode 18

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Welcome back to the All About Audiology podcast. I’m your host Dr. Lilach Saperstein and this is the All About You episode. We have- in every other episode- we have a content, a topic and then it’s all about you, where I hear from you guys, the listeners, what you guys are going through, what your experiences are, and how you are resonating with what we are talking about on the podcast.

So this episode is going to be focused on music therapy and how to use music therapy with children who have hearing loss to give them access to language and communication and connection. Over the last couple of weeks, we’ve had a bit of a theme. The episode with Kimberly Sanzo where we talked all about sign language and how important it is for children to have a means of communication, access to language. That episode was very well received by many of you and I really appreciate Kimberly’s advocacy on this front about language access.

The episode after that we spoke with Toby to hear all about her experience from childhood, from getting implanted as a child, to building identity around her deafness and what it means to communicate with her cochlear implant and be part of both the deaf world and the hearing world. And from that episode I heard from some of you how you resonated with the way that the worlds actually overlap and interconnect and having family members who are deaf or hard of hearing or for being children of deaf adults, CODAS. I heard from some of you about that and I really appreciate all of your comments on that.

AND, I want to wish a hearty Mazal Tov and congratulations to Toby and her husband on the birth of their son. Congratulations and we are so happy for you!!!!

Then the episode after that was a conversation with Valli Gideons from mybattlecall.com and she shared with us about the mother’s perspective, her journey as a mother, getting the diagnosis for her children, what becoming an advocate has looked like a little bit throughout her life being a mother to two children with cochlear implants. I so appreciate all of you listening and all of your feedback and comments. We’ve been connecting on Instagram and we also have the Facebook group, All About Audiology, and I love the way we can just connect. We can be on totally different sides of the world, different time zones, but when we are talking about these important issues, we are in the same time and place and connecting across the internet and it’s amazing.

So I got a comment from Chloe Tompkins. Chloe is an amazing musician. https://www.instagram.com/chloeskids/

She does music programs for children who are deaf or hard of hearing. She does it in libraries, in schools, and in private groups in Westchester, NY. I invited Chloe to come and have a little chat with me about her work and what the podcast has meant for her. How the episodes that I just spoke about have been resonating for her. So here’s a little bit from Chloe.

Chloe: “Hi, thank you so much for having me. I’m Chloe Tompkins and I own a small children’s music and entertainment business in Westchester, NY. Mostly what I do is provide music classes to schools that don’t have music programs, that don’t have multi-music programs already. And I also do libraries and community centers, birthday party events, that sort of thing.”

LS: “Wonderful. So what kind of music, or what would happen at a typical party or class that you do?”

Chloe: “So what makes my program a little bit different from other people’s program is that I’m a hard of hearing musician myself. I speak English and ASL so I’m able to provide classes not just to hearing children but also to deaf and hard of hearing children and to mixed groups. Like at a birthday party, where perhaps a couple guests are deaf and a couple are hearing. I play the accordion which is a little bit different also. You only need one hand to play the instrument so there’s always some modality of communication still, obviously not as wonderful as having both hands available, but I can still speak and sing with my mouth and sign with one hand while I’m playing it, which is really cool.”

LS: “That’s amazing. I saw your videos on Instagram, just the one of “Row your boat” and I was wowed. It’s like a total communication at a whole new level.”

C: “Thank you.”

LS: “Can I ask you about your hearing loss, and when did that start?”

C: “Sure. I was born hearing. I had hearing loss in childhood but didn’t really feel the effect of it until adulthood when it was getting progressively worse through my 20s. I became more connected with the deaf community when I started learning American Sign Language. I use hearing aids so I’m also very connected to the hearing world. A lot of my day to day stuff is in the hearing world. But through that, it really opened my eyes to what was going on with deaf children in the country. Becoming closer to deaf adults also opened my eyes to what the future for deaf children looks like, or how so strongly it depends on what kind of early education they get. Hearing loss has really been a blessing, even though I’m a musician. People tend to think that it’s sad that I’m losing my hearing, but not only has it introduced me to the deaf community and deaf children but it’s also completely redefined how I think of music and how I think about teaching music to other people in a way to be more inclusive and accessible. So that’s all really exciting stuff, it’s been a blessing.”

LS: “Did you have any connection to ASL or the deaf culture before you started losing your hearing?”

C: “Not really. I mean, I have family members with hearing loss but were never “Deaf”. I grew up oral in English. As a kid, I knew some simple signs and I knew the alphabet, but to learn it as full language and to understand it as a full language and to understand the culture as something completely separate from the hearing experience, that wasn’t something I came to realize until adulthood.”

LS: “That’s such a unique experience. I don’t know anybody in general that has hearing loss in their early 20s or something like that, that would even consider that if they are successful with their hearing aids and are able to hear and go through their day. It’s interesting to me what moved you to actually owning that kind of connection, you know what I mean?”

C: “I think seeing how confident and rich the lives of the deaf adults that I know are and also for three years, I worked in this one particular deaf school. I wasn’t working with the high schoolers, but watching them and seeing how rich their teenage experiences compared to the kids I know that are deaf and mainstream, maybe aren’t having that same kind of experience, that’s what really sold me on this whole idea.”

LS: “Yeah, the isolation.”

C: “Yeah, it’s interesting. When you touched on the effects of language deprivation in a previous episode (it resonated with me). I have adults in my life, close friends whom because of severe language deprivation as young children, they had struggles that I can’t even describe. Some people I know in particular maybe can’t get a job because they can’t do simple math, and they are otherwise extremely intelligent. That’s when it really hit me that there is this big connection between what happens right at the start, what kind of language access you have and what kind of road you have for the rest of your life. I quickly became very impassioned in this world because I really care about the children and I really care about the other adults in my life, especially those with hearing loss, we all kind of have to look out for each other.”

LS: “That’s amazing. So we know the first three years are a critical period of language acquisition. You are working with babies and toddlers; tell me a little bit about what kind of games you play, how do you enrich however much time you have with them to maximize that learning?”

C: “I’m very physical and engaging and sign language is naturally captivating. So children right from the start recognize that that’s something they can reciprocate to express themselves. So we do a lot of vocabulary building games, these are little children I’m working with mostly. For example, the video that you saw is at a public library so those are mostly pre-verbal little kids. Through the music and through the signing we are creating an environment where the visual learners are seeing the sign, the kinesthetic learners are doing the sign and the auditory learners are hearing me sing and anyone who is lacking in inaccessibility to any of three of those, is still able to get something. It looks like a typical kids music class, but I think the activities we do are a lot more geared toward encouraging language and communication. The goal is to create programs that are fun for deaf parents and fun for hearing parents and fun for deaf and hearing kids alike as well.”

LS: “Okay I have one more question and this is where we go into the bits of controversy. We have this kind of divide with the cochlear implant/auditory oral verbal therapy only, versus the isolation that you sometimes see in Deaf culture and we are doing this amazing thing and bringing that and showing that the representation it’s not for separate people. Even the idea of CODAS in the family, there’s people that hear, people that don’t hear; there’s a big connection. So I’d love to hear your thoughts on our last previous episodes about cochlear implant experience, language deprivation, just whatever you want to say about this.”

C: “I have to tell you how I’ve loved the past three episodes. I’m so happy that you had languagefirstlab on. I’m so thrilled to finally see an audiologist getting this information to people. I’m so appreciative of what you are doing. I think it’s come up a couple times to listen to and believe deaf adults as the authority of the deaf experience. That at the end of the day, a deaf adult does know about being deaf better than a specialist in the field who is not a deaf adult. I loved the comment that when a baby is born and “fails” the hearing test, definitely a person on the team should be a successful deaf adult that uses American Sign Language to communicate just to show the parents and just to start the conversation of educating. To be honest, I have friends with CIs (cochlear implants) that love their devices and are very grateful for the technology and I have friends that would sooner do anything then put themselves through that or see someone they care about implant themselves. I’m all for the support of a personal decision. I think in my own experience, it seems like maybe people are letting it be more of a personal choice and not being as vocally judgy of each other. But again, maybe that’s just my own little tiny social circle.

I was recently in a production at Teacher’s College at Columbia University deaf music show where everyone involved in it was ASL or deaf or CODA or hard of hearing, and there’s all different kinds of musicians and all different ways to talk about expression of music and there were oral deaf people with CIs in the show, there were ASL Deaf, there was the full spectrum of what it could mean to identify as a deaf person. To build the right kind of curriculum for the future and to do the best by our deaf kids in the future, everyone needs to have a voice at the table. Everyone needs to be able to put in their input. That particular production was a good example of Dr. Julia Silvestri, a very successful young deaf woman. It was just such a good example of we all have something to contribute and I think that’s one of my big takeaways from the last three episodes. I could definitely I love the podcast you’re making and I can go on for ages about it….”

Thank you so much Chloe, I really appreciate what you are doing. Children of all abilities, children of all hearing abilities are able to gain from all kinds of modalities from seeing, hearing, sensing and touching things, and using our bodies and all of these different modalities are ways that we can connect, educate, communicate, learn, play, and grow. So I just get so excited about this and I’m really grateful to you Chloe for your work and for all of YOU for listening.

Now another, totally unexpected and wonderful thing happened this week which completely fits in with our theme. I’m talking about music therapy in ways of engaging with children and encouraging children. I got connected with Alison Hughey, a music therapist and she put out a call and said, ‘I would like to write a song for you. Whatever is it that you need a song about, I will write it from my heart to your heart.’ It was such a generous offer that she put out. I reached out to her and told her about some of your journeys, some of the journeys that you guys have been sharing with me, what other parents that I work with have shared with me. The fears of raising a child who is different, who is differently-abled, who has a hearing loss or is deaf and you feel the barriers that they are going to experience in their life. One of the things that really stuck with me from what Toby had said, which is that when the baby is born, it is your baby. Just a sweet little bundle that you want to kiss and hug and count their toes and tickle and you are also extremely sleep deprived and overwhelmed with the huge changes, the magical shifts that happen when you have a child in your care. And how having a diagnosis on top of it can really change the course of what you expected for what that journey is like and now it’s a different journey. So I told her a little bit about that story and she said, “I got you. I’m going to write a song for all of you, I’m going to write a song for all your listeners.”

So here it is, the song from Alison Hughey. I’m going to have all of her links in the show notes and links in the post.

Carolina Music Therapy: www.facebook.com/alisonmtbc

Instagram: https://www.instagram.com/carolinamusictherapy/ and https://www.instagram.com/aliflute/

I look forward to our next episode. Stay tuned for that! We are changing gears and for our next episode you will hear my interview with a lovely speech therapist about the breadth of what speech therapists do and what are some misconceptions about speech therapy and speech language pathologists. So come back for that episode. I’m so grateful that you are here. I’m Dr. Lilach Saperstein, this is the All About Audiology podcast and here is a song for you today.

Song:

You’ll never know where your life will go

So just take it one day at a time

You’ll never know where your life will go so just take it one day at a time.

Each morning choose hope over fear.

Stay present, be now, be here.

The gift of your presence is the best present that you could ever share

Look at this beautiful day, find joy in every minute some day

and day by day you’ll build a beautiful life.

You’ll never know where your life will go so just take it one day at a time

You’ll never know, just where your life will go

so just take it one day at a time.