At Evie’s 6-month cochlear implant review, it was noted that Evie was not making the expected progress in her speech. Evie has quite a unique Deaf profile given her unilateral Auditory Neuropathy Spectrum Disorder (ANSD) alongside being bilaterally profoundly Deaf, so it’s a real challenge to know what the future of Evie’s communication will look like. Evie’s preference is British Sign Language (BSL) and has not shown much interest in noise so far. She never had access to sound prior to her cochlear implants, and, understandably, it’s a massive transition that’s taking her some extra time to adjust to.
Unfortunately, due to our location we are very limited in our access to support. Evie will not access speech and language therapy for at least another 18 months. We have not been able to find childcare that can accommodate Evie’s needs, and accessing the Deaf community involves lots of travelling.
I was feeling quite dejected and overwhelmed. It felt like I was the only person who saw positives in her journey or had astronomical expectations of her. No one could see the resilient, clever, resourceful, cheeky(!) little smiler I could see. I knew Evie’s needs were not being met, and I wanted to change that.
My son, who is autistic, has had Music Therapy for a number of years through a local charity. Their involvement with him has been, quite honestly, life changing, and I wondered if music therapy might be similarly beneficial for Evie. After some research, I was further driven to get Evie into music. I hoped Music Therapy would remove the pressure of producing words and help Evie learn the joy in noise and listening.
I contacted my friend who is a music teacher to ask for some advice. She put me in touch with Jenny at Forth Music Therapy, who were eager to support Evie. The music therapists were very accommodating of Evie’s needs. I had long conversations with the director to discuss what Evie’s needs are, what targets had been set by her rehabilitation adviser, and what my hopes were for Evie having the opportunity to engage in music. Evie’s Music Therapist is absolutely incredible with her. There's been excellent communication between her and Evie's Teacher of the Deaf, and she even has basic BSL!
Evie immediately lit up as soon as we walked into Music Therapy. I could visibly see her processing the different tones, pitches and volume of the different instruments as she explored. Within 2 sessions, she was verbalising alongside the music, trying to copy the noises they made and engaging in beautiful back and forth.
The focus, engagement and joy was something I had never seen in Evie before. She loves the drums, especially the high hat. We are now exploring string instruments. She loves to hold a guitar or violin like a cello so she can feel the vibrations through her whole body. She now identifies which instrument different noises come from, she can tell the difference between loud and quiet, she can keep a beat while listening to a song, and dances her little heart out to her favourite beats!
We're now almost 10 sessions in. Music Therapy continues to be her favourite hour of the week. We have managed to get funding from 3 different charities now which should take us to almost 6 months of sessions for Evie.
As a parent, I found it so healing to see Evie happily engage in sound on her terms. It reminded me that it’s not always about the 'tick boxes' we are frequently reminded about by professionals, but the real-world life experiences that engage our children. Evie may not be 'meeting her targets' from a professional viewpoint, but she wildly exceeds my expectations every single day. I could not be more proud to be her mum.
Keep playing, little one, and stay loud!
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We asked Evie’s Music Therapist, Forth Music Therapy's Angeliki Gkini, for her perspective on Evie’s journey:
"Sharing these musical moments with Evie has clearly demonstrated the magical and healing power of music. In the shared space she has the opportunity to express her feelings and unfold her inner world while creating unique sounds and vocalisations.
Evie is encouraged to explore a variety of instruments and sounds, and to feel the vibrations which offer a unique physical awareness. Music can be a way of building creative bridges of communication beyond words. Her smile is a powerful indicator of her enjoyment and of how music can offer as an alternative form of interaction and engagement.
Being with her, listening and responding has helped in building a strong therapeutic relationship which encourages her to share her spark and light with everyone else around her."
- Angeliki Gkini, Evie's Music Therapist.
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Jenny Barrett-Freeman, Managing Director at Forth Music Therapy Service and HCPC-registered Music Therapist, added:
"We are extremely pleased with Evie's response to music therapy, with her enthusiasm, and with the significant progress she has made. It is also wonderful to see her having so much fun in the sessions! Her music therapist, Angeliki, has used music and instruments so creatively to connect with and support Evie.
We are very grateful to Jenna and Evie for sharing these experiences and raising awareness about how beneficial Music Therapy can be for people who are deaf or experiencing hearing loss, and who might otherwise not consider music therapy as an option for them."
This story was republished with permission from Jenna, Angeliki Gkini, Forth Music Therapy and the National Deaf Children’s Society. It was originally published on the National Deaf Children’s Society website. BAMT would like to thank Jenna in particular for giving us permission to share Evie's beautiful story.