The Garden of Evan is a charity that raises funds to provide sensory equipment for children with additional support needs. Set up by Elise Schwarz – in memory of her son Evan, who passed away at the age of two – one of the charity’s many achievements is the publication of Garden of Evan – A Sensory Story Book. The book incorporates sensory experiences to bring the story to life, with proceeds funding sensory equipment for children with additional support needs. This National Storytelling Week, we wanted to raise awareness of The Garden of Evan, the charity’s book, and the importance of sensory storytelling in general.

Before she had Evan, Elise had never heard of Sense Scotland. But less than six months after he was born, in early 2012, Evan was diagnosed with profound brain damage and as a result, was hospitalised first in New York and then, at the age of fifteen months – when Elise and Evan moved back to Glasgow – he was admitted to Glasgow’s Royal Hospital for Children (at the time known as ‘Yorkhill). While there, she met Rachel, a support practitioner from Sense Scotland, who introduced Elise to the services we provide and helped to keep Evan’s (and Elise’s) spirits up with lots of songs and play.

Rachel invited Elise and Evan to TouchBase Glasgow, where she was introduced to Susanne MacLean, a family advisor who continues to work at Sense Scotland to this day. Elise describes Susanne as “amazing – [she] opened up a whole new world for us”. When Elise and Evan would move into Elise’s childhood home in Glasgow, Susanne would visit them weekly to engage in sensory sessions with Evan. Evan would also attend TouchBase Glasgow three times a week, spending time in music and arts sessions as well as our specialised sensory room.

Elise noted that while the care Evan had received in the past had been therapeutic, the sessions with Sense Scotland were special as they were a lot more centred around play. In sessions with Susanne and music therapist Jojo, Evan would play with light-up toys in his blackout tent, and would use a resonance board to feel the vibrations of music from Jojo’s ukulele or cello. The music was enjoyable and comforting not just for Evan, but for Elise too. Additionally, Evan showed new, positive behaviours as a result of the sensory sessions, such as banging on a drum, which Elise describes as “unbelievable”.

Evan passed away in early 2014, aged two-and-a-half. For many years, Elise was understandably devastated; in time, however, with the support of family and friends, she gradually began to find ways to honour Evan’s memory. With this support, she was able to launch The Garden of Evan, a charity named after her son which would raise funds to provide sensory equipment for children with additional support needs.

Together with Susanne MacLean and a close friend, Elise got a board together for the charity. One of the board’s first decisions was to launch a children’s book. Acting on advice from Susanne, alongside sensory storytellers such as Joanna Grace, the charity determined that the book should be a sensory story book. With artwork and poetry from independent artists, the book – Garden of Evan – A Sensory Story Book – went through a lot of testing, including being shared with the parents of the children with whom Evan had been in hospital. A first edition was published, followed by a second edition with additional changes.

Garden of Evan – A Sensory Story Book is available to purchase online, including through the Sense Scotland shop, and will be featured on the Garden of Evan’s upcoming website. The Garden of Evan also ensures that free copies are sent to places where they are most needed, such as schools and hospitals. The charity also launches a fundraising effort each Spring and Autumn to raise money to buy sensory toys for people with specific needs.