At Crossover Music Magazine, we are so often privileged to sit with artists at different points along their journeys, emerging voices, established names, and everyone in between. Through those conversations, we connect with readers who are musicians themselves or listeners whose lives have been shaped, softened, or even transformed by the power of music.
This time, the story arrives by a slightly different path but leads us to the very same place.
Soundabout is a UK-based charity that has been quietly changing lives since 1997. Their mission is beautifully simple and deeply profound: to make music accessible “for learning disabled people with complex support needs to enjoy making music with their families, peers, and communities throughout the country.” It is a commitment rooted in dignity, joy, and human connection, the very heart of why music matters.
I had the privilege of speaking with Liz, the mother of Ava, a remarkable young woman whose life has been genuinely touched by the work Soundabout does. As Liz shared her story, she spoke with honesty and tenderness about the changes she has witnessed in Ava, and the support Soundabout has provided at some of the most crucial moments along the way.
While we will be sharing our interview in full on our YouTube channel, for this piece, it felt right and necessary to step back and allow Liz’s voice to be heard without interruption. Her words carry their own truth, strength, and quiet beauty.
I hope you will be as moved by her story as I was.
Joanna Forest
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Ava is 17 years old and was born with a complex brain injury, which meant that she went on to be diagnosed with cerebral palsy, affecting all limbs, and has severe, uncontrolled epilepsy. She’s blind, is a full-time wheelchair user and is also described by many as non-verbal. Ava’s disabilities don’t define her, though. She’s funny, cheeky, resilient and brave. She has an enviable ability to always live in the moment, never longing for what’s happening next, or grieving over what has passed.
Ava has a killer smile, an infectious giggle and an unwavering obsession with all things musical. Music has always been there throughout our journey with Ava. It somehow unlocks something in her, enabling her to communicate and express herself with ease and confidence, and when the words don’t come, Ava can still be heard, as music gives her a voice and a platform to communicate and exchange in musical conversations.
It’s now just over 5 years since the first Covid lockdown. Lockdowns were not a new concept to us, as due to her medical needs and frequent bouts of chronic health issues, Ava had always spent long periods of time at home. Historically, these periods hidden away meant Ava became isolated from her friendship group, as she wasn’t well enough to attend school, and this always had a profound impact on her mental health. I’d always struggled to find things to do, to stimulate her and keep her engaged and occupied, but just over 5 years ago, whilst scrolling through Facebook, I came across Soundabout. A practitioner was doing their first-ever Soundabout live session! I suddenly found myself staring at the provision Ava had always needed. A provision that had previously never existed, but that lockdown had suddenly created, as the world scrambled to stay connected, and Soundabout started their wonderful online provision. I’m quite sure that no one realised, in those initial days of creating provisions in a virtual world, that they would have a lasting impact on so many young people, who had previously been unseen! It felt like a sliding door moment in Ava’s life.
Since then, she’s joined many, many sessions. She attends after-school clubs, sat lives, all-day festivals, song explorers, all online! It’s strange because prior to lockdown, if someone had suggested Ava engage with online learning, I’d have told them not to be so stupid! The idea that my blind child would gain so much from Zoom would have felt ludicrous to me, but actually, those early days of Facebook Live, where the practitioners couldn’t even see the participants, was the level playing field that Ava had never experienced. They were almost in her world now, unable to see, so working as equals, it was a real leveller.
It astounded me how much practitioners very quickly learned about Ava, from the small comments I’d typed in the chat box. They remembered the things she liked and weaved them into future sessions. It made her feel important. She LOVED it when they spoke to her, sang her name and when we moved on to Zoom sessions, the practitioners’ joy at finally getting to see the young people’s faces, faces that had previously only been imagined, just been names on their computer screens, was a beautiful, beautiful moment. Their excitement really touched me as a parent carer. It was like welcoming old friends you’d not seen in a while.
We can all remember how important human connections became to us all during Covid, but many of these children had lived in that world of lockdown, almost their entire lives, so meeting new friends was even more profound and completely and utterly life-changing! Every provision brings something different, and every practitioner sprinkles a different type of magic. Soundabout helped me create the home school provision Ava always needed, but wasn’t there. They collectively shaped the provision that has had a real impact on her development and progression in so many areas of her life. It’s reduced her isolation, helped her feel seen, and it’s been an antidepressant to us all. The team have made her feel valued, heard and loved.
Historically long periods of time at home left her extremely isolated. This isolation impacted her significantly. She would shut down physically and emotionally without anything to engage with; her mental health would spiral quickly, which in turn seriously affected her ability to recover from illness, infections, and chronic pain. What’s the point in getting up if you’ve got nothing to get up for? I could pop a radio on so she has something to listen to, read her a story but that wasn’t asking her to be part of something and as a parent I was juggling so many roles, parent, physio, S&L therapist, OT, counselllor, nurse, PA, advocate, cheer leader, I didn’t have the resources or skill set to also be teacher. I just wanted to be her Mum!
Now when Ava is too poorly for school, we start our homeschool day with our Soundabout family. We open up YouTube, find one of the many incredible sessions in their extensive library of sensory musical sessions and journeys, and we find a session that’s calling her in, welcoming her, asking her to share and be part of something. The difference that makes is instantaneous. She might not even be well enough to sit up; her first home school session of the day might still be in bed, but the practitioners are there, and in her mind, she’s seen, and they’re inviting her to be part of something beyond her pain.
Ava’s totally blind, with no perception of light, and when she’s chronically unwell, I used to see that world of darkness engulf her. Our Soundabout family fill her days with light and colour and magic, and I’m never not moved by this. This has more impact than any pain relief I can ever give her. They paint her a world in Technicolor and I get a front row seat.
They do all the hard work for me, I can just support Ava, instead of having to create the activities to keep her engaged and stimulated, which takes a huge pressure off me. We now get her after school clubs, family membership and holiday sessions funded by our local authority as part of Avas home school package. I was able to evidence the impact their sessions had on her by documenting her improvements in communication, vocalisation, and her ability to make choices and take turns.
Her love of conducting came from after school club, Karen and Georgie saw very early on, that Ava would move her body in time to music, they then started to encourage her to control where they took the music, how fast they played, their musical notes moving up and down with her arm movements and her chest tapping controlling the beats on their drum. It took a further 18 months for that to transfer over into her traditional school placement, but we often see that the skills she’s learnt at home, where she feels most safe and comfortable, later transfer into other areas of her life, and more people can see all the wonderful things she’s capable of, because of the service Soundabout have given her.
They have shown up when she’s at her absolute lowest moments. They’ve been there as her cheerleaders when she’s in a good place, but they celebrate her no matter what her state of health, good or bad, they are there, and that’s the most unbelievably impactful provision, an unrealised dream come true, that’s literally been life changing. Song Explorers has been a beautiful extension to Soundabouts traditional choir provision. Where else can you sing in a choir, when to the outside world, you are seen as non-verbal? A choir that’s solely for children who society says can’t speak, but together they sing and create magic as their vocalisations are encouraged and celebrated.
I swear to god Soundabout should be available on the NHS. They’re the best medicine anyone has ever prescribed, and the only side effect is pure joy. Their impact in hospital settings is immeasurable. What struck me the most, when after school club was created on Zoom, was the amount of children who were regularly zooming in, from their hospital beds! Ava’s had numerous hospital stays where the team have made the room safe for Ava, in an environment where she’s felt anything but. Hospitals are scary places for Ava. People are always waiting to do something painful or frightening, and it’s an environment of complete sensory overload, which generally results in Ava shutting down, which in turn has a drastic effect on her clinical outcomes. Having the online Soundabout sessions to engage with enables us to reset Ava. They distract her from pain and the fear of procedures, they take her away to a safe place where the bad people don’t come and they make her feel like she has some control, in an environment where she has no control and is unable to even give consent for the tsunami of procedures that just happen to her and she so rarely has a choice.
The safety of Soundabout becomes a very powerful gift and one we are truly grateful for. Thanks to the catalogue of online sessions as well as the regular weekly live sessions, Soundabout practitioners have been there for canula’s going in, for ECG’s and EEG’s. They’ve been there post and prior to surgery. They’ve sang to her as she’s gone to sleep under the care of an anesthesiologist. Her surgical team have rolled with us as we’ve danced and sang along on a wild sensory journey that’s sent Ava off to sleep in a safe place. On many occasions, the Soundabout practitioner didn’t even know they were there, but Ava did, I did, and their music made everything feel less terrifying, and we weren’t alone.
The team is vast. They all bring something very different to our lives. What’s always been beautiful is that they get to see us in our homes, on holiday, in hospital, at day centres. They get to see our young people wherever they are, but we also get to see them in their homes, their place of work, and on their holidays sometimes. They have shared their pets with us, their friends with us, and partners with us and no other professional gets to do that with our children, or even wants to. I’ve always felt profoundly moved by their willingness to share their life, with us. Some practitioners love to travel and have run sessions from other countries, whilst on their exciting travels. We never know where they are going to be, and that’s the real standout difference between a normal traditional teacher and a Soundabout practitioner. They share so much more of themselves, their talents, their lives, and it is like liquid sunshine in the warmth that it brings.
My biggest fear as the world returned to a new normal post covid was that my beautiful girl would be left behind again. At the age of 13, she had experienced inclusion for the first time, real inclusion, for the first time ever! Covid meant she had been able to access everything her peers had, and her skills developed more in 2020 than they had done in at least the 5 years prior, because she was able to access full-time education, headlined by a team who spoke her language and put absolutely no conditions on her ability to take part. They met Ava, and they loved her and welcomed her exactly where she was. They didn’t ask her to be better, or stronger, or more resilient; they just met her and made her feel good enough, just as she was. Ironically, this was the key to enabling her to be the absolute best version of herself, and she flew!
As the world returned to normal, they left no one behind. Their commitment to continue and expand their online provision is unrivalled by no other service. You can never underestimate the impact they have on the young people they meet, on the faces that pop up on screens up and down the country. The team really are like family and means the absolute world to Ava and has helped create and mould the exceptional young lady that she’s become. The team reaches the children and young people that society doesn’t see, those who are the most vulnerable, and they bring them into the light!
It’s 5 years since the first Covid lockdown, 5 glorious years for us, of Soundabout showing up, being there, bringing the absolute A game of teaching and feeling and connecting, and we love them all and appreciate every single one of them.
