“This is Ava. Ava is 14 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, severe uncontrolled epilepsy, she’s a full time wheelchair user, has scoliosis and is also non verbal and blind. 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 and 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.
We first joined the Soundabout family in April 2020, during the first COVID lockdown. We came across one of the Facebook live sessions and were immediately hooked. Ava had always spent long periods of time at home, lockdowns were not a new and unusual way of life for us, but usually these periods 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 I suddenly found myself staring at the provision Ava had waited her entire life for! I couldn’t believe how immediately welcomed she was. There was no application process, no form filling, no prolonged wait for a service, we were straight in and Ava was loving it! I think I started to look forward to these sessions just as much as Ava.
We were suddenly in this community of people who just understood our life and we very quickly felt like we knew these other children and parents, despite never even seeing their faces. It really helped us both to feel less isolated, something that any parent of a child with complex health needs can relate to. We spend so much time locked away at home, because our children aren’t well enough to access mainstream activities, that loneliness and isolation are all too common but these sessions made us feel seen and valued and supported.
We were super excited when we found additional sessions on youtube and the home school and after school clubs were like a dream come true! The therapists very quickly worked out what made Ava tick, long before any of them had actually even seen her. With the initial sessions all being on Facebook or YouTube, it took a huge amount of skill for the therapists to understand who she was and what she was capable of, but for us, with Ava being blind, this felt all the more magical.
They worked in her world and music was the spoken language that they both understood, as equals and for Ava it was all just so easy. They took her on so many magical adventures, far away from her world of isolation and pain, far away from the restrictions her disabilities put on her and we watched her grow and develop in confidence and her communication skills increased dramatically! Ava suddenly had access to music therapy, whenever she needed it, wherever she was and no matter what her state of health. All we needed was her iPad and we could access this first class educational provision, 7 days a week, via live sessions and their impressive catalogue of previously recorded sessions that we could play back any time.
Soundabout offered Ava a life changing service. Ava had never managed full time education, her complex health needs had always meant this was never attainable, but I never felt there was an alternative to option, I never believed I could manage homeschool as a long term option, but the quality of the online provision that Soundabout offered gave me the confidence to re-look at what education could look like for Ava and she now does a mixture of home school and traditional school placement, which offers her the best of both worlds and works so much better for her.
Soundabout has been a lifeline for us during hospital admissions. We’ve had several occasions, where we’ve been able to use Soundabout, to transform the atmosphere in the room. 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 Soundabout sessions to engage with, enables us to re-set 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’s rarely in control and rarely has a choice. That is a very powerful gift and one we are truly grateful for.
I now cannot imagine what our life would be like without our Soundabout family. The therapists are so invested in her, they celebrate all she is, encourage and nurture her and see her as we do. They see her for all the incredible things that she is and never stop pushing her to be the best that she can be. They’ve seen her at her absolute best and her absolute worst, which is an exceptionally unique relationship, that is unmatched by any statutory service and it’s this level of engagement, that’s made Soundabout so exceptional. They meet children where they’re at! No matter where we are, or what state of health Ava is in, they are there ready to work with her and no matter how poorly she is, the music always brings us back to us.”