Raukatauri Music Therapy Centre student Ishkalla experiences the world through music. Photo / Dean Purcell
Music Therapy Week begins on Monday. Richard Betts visits New Zealand's only music therapy centre to listen and learn.
The room is filled with instruments, but everything has its place. Gwen Evans picks up the djembe and immediately lays down a solid rhythm on the African drum. Zach Farr flitsbetween instruments. One minute he's hitting a bluesy piano riff, the next he's finding the key on a xylophone before settling on guitar. Jimi sits at the drum kit, listening carefully and providing tasteful fills as required. Everyone's eyes are on Ishkalla, the session's leader. She falls in with Evans' beat, making runs on an electric keyboard. Four people are singing but only Ishkalla has a microphone.
She has a pretty voice and a good ear. Ishkalla is improvising but she always knows where she is within the music, even when she sings harmony to her own keyboard playing. She exudes close-eyed joy in her performance and, like any good bandleader at a photoshoot, she plays to the camera, flicking her hair and jiggling her eyebrows as the Herald's photographer captures the moment.
Another day, another young band practising in the front room of a Grey Lynn villa. But Evans and Farr aren't members of Ishakalla's rock group, they are her therapists; Jimi's her dad. The next hip indie outfit will not emerge from this house in Auckland's cool city fringe suburbs. The villa is the headquarters of Raukatauri Music Therapy Centre, the only one of its kind in the country and where Ishkalla visits regularly for sessions like these.
The centre was established in 2004 by singer Hinewehi Mohi. Mohi's daughter, Hineraukatauri, has severe cerebral palsy and responds well to music therapy. The centre was named in her honour and works with people who have emotional, intellectual, physical and social challenges.
Ishkalla has Williams syndrome, a rare genetic disorder affecting about 200 New Zealanders. First described in the 1960s by Kiwi cardiologist John Williams, symptoms include distinctive facial features, extreme sociability and chattiness and cognitive abilities that score on average 30 per cent lower than the general population. Some with Williams syndrome show strong musical talent.
Ishkalla experiences the world through music and it's also the way she expresses her world. She and Evans communicate through call and response, like a gospel choir, though this one's having a decidedly non-sacred back-and-forth about how Ishkalla thinks milk chocolate is better than dark chocolate.
Raukatauri is clearly important to Ishkalla. She keeps asking if she can hold her birthday party there - she turns 14 in a few weeks - and makes plans for an elaborate (milk chocolate) cake. Ishkalla isn't the only one to think of the centre as somewhere worthy of holding a birthday party.
"This is a place that makes sense to people," says Jen Ryckaert, Raukatauri's clinical and centre director. "I have another client and this is where her friends are, this is where she comes every day of the school holidays, just to be here and look at the instruments and have a look around, because it's the place that makes sense to her. School doesn't make sense, the rest of the world doesn't make sense. This is where she can connect with people and feel that she belongs."
As well as working from the Grey Lynn villa, the organisation does outreach work across Auckland and has satellite clinics in Hawke's Bay and Northland. Its therapists also visit Starship Children's Hospital, Mason Clinic psychiatric facility and Hawke's Bay Regional Prison.
Is the prison work a way to humanise inmates' time inside or to prepare them for release?
"I think it's both," says Ryckaert. "A fundamental goal for us is developing relationships. Often in those facilities we're working in groups, so developing relationships among the group members and that's going to be central to functioning on the outside.
"People who commit crimes are often able to dehumanise someone, so the ability to rebuild relationships is important. We're often working with people who have histories of trauma and abuse and have not developed secure attachments with parents and caregivers, which again allows them to more easily dehumanise other people. There's lots of research around music therapy being a wonderful way to help rebuild or establish attachments."
Recently, Raukatauri has started music therapy sessions with refugees who have suffered trauma, particularly when a loved one has died.
"It's isolating when you've lost a spouse or a parent and you find you're in a culture where people mourn differently to you and respond differently to death than your culture does," says Ryckaert. "To be able to connect with a music therapist and start to rebuild trust in relationships for those children and then for the parents to build trust here with us and to get to know other families has been really important."
In all, therapists from Raukatauri, all of whom hold Masters degrees in their field, see 260 clients aged from 0 to 70, 75 per cent of them in one-on-one session, with the remainder attending small-group programmes. Ryckaert says each session costs about $140 to run but clients pay what they can afford and those attending outreach programmes pay nothing at all.
Raukatauri does all of this with no direct government funding, though there is sometimes indirect money if, for example, a client receives therapy as part of an ACC claim. The centre has secure funding from several charities and other non-governmental bodies but Raukatauri does not employ a dedicated fundraising specialist. Ryckaert does that work herself, with the help of one administrative person on top of her own full case load.
Fundraising is tough going; Raukatauri can't rely on wealthy patrons for donations, as an orchestra or art gallery might. And nor does it have the profile or personal connection of a Starship or Heart Foundation.
"Our main stakeholders are our families, who are already paying what they can afford," says Ryckaert. "Starship, Hospice and other big fundraisers go out to the community [for donations] and they're always talking to people who have some experience - everyone knows someone who's been in hospital or has had cancer."
Ryckaert admits that another problem is that it's hard to articulate what music therapy is, what it achieves and how it achieves it.
"There are different ways to practice music therapy," she says. "There are therapists who work in a super-musically oriented way and therapists who may play music and use psychotherapy-guided imagery techniques. There's a strain that uses physiology and neurology and is about how music interacts with the brain. We work eclectically here, in a client-centred way, based on what suits our clients best."
Everyone, in other words, is treated differently.
"We see each person as an individual," agrees Evans, who, as well as being Ishkalla's therapist and sometime djembe player, is a trained opera singer and holds a Master's in music therapy from the Guildhall School of Music and Drama. "I take the person as they are coming into the room because, for example, autism can present differently in every child and even differently in the same child depending on the day."
As well as being difficult to describe, it can be difficult to articulate that music therapy is not a pill with which to cure someone. Ishkalla will always have Williams syndrome. The objective, therefore, is not to "make her better" and it's unhelpful to think in those terms.
"The aim is to provide space to explore her musicality," says Evans. "There's no end goal, we're trying to improve her quality of life and provide a space for self-expression. Hopefully she gets a greater sense of self and tools to communicate her needs and emotions."
Ishkalla's parents are pleased with the results of her therapy.
"It has given her possibilities for self-expression," says Asho, Ishkalla's mum. "After six months her levels of frustration were different. Music therapy enables her to release emotions and we can figure out what's going on inside her head."
What would happen to families like Ishkalla's if Raukatauri ceased to exist?
"I really can't imagine that," says Ryckaert. "As neuro-typical adults we get to seek out opportunities for personal growth and expression and relationships and things that feel good. For our clients, this is that place and it would be a social iniquity, almost, if they didn't have those options."
Raukatauri's absence would certainly affect Coco and her mum, Jo. Their's is one of those cases you hear about, where the parents suspect there's something different about their child but the medical profession sees a smiling, happy baby, tells the parents they're imagining it and sends them home.
But Coco is almost always smiling, even when she's unhappy. It's among the most visible symptoms of her condition, Angelman syndrome (AS). Coco once suffered through a physiotherapy session with a broken foot, beaming all the while. She likes a cuddle, too, and loves the water, more endearing signifiers of AS. The flipside is that Coco, now 3, is unlikely ever to speak, has trouble standing and, as a result of her condition, has suffered numerous seizures of varying severity. So regularly has Coco ended up in the emergency room that the family chooses to live within 10 minutes of the hospital.
Of necessity, Jo has been a tireless advocate for her daughter's health. When she finally got a diagnosis, Jo went into what she calls take-care-of-business mode, learning everything she could about AS and studying the science in such detail she could write a medical paper on the subject.
So extensive is her knowledge that Jo has become a resource and support person for other parents of children with AS - as if she doesn't have enough to occupy her: Coco requires 24-hour care and rarely sleeps.
Jo and I watch Coco's therapy session via video link from another room. It's a completely different process to Ishkalla's; Coco doesn't play an instrument and, unlike Ishkalla who remains seated at her keyboard, is constantly on the move, mostly on her hands and knees, touching and pulling and experiencing the things around her. Ryckaert, who conducts Coco's sessions, says these are positive signs.
"Coco's now able to be more interested in using things purposefully; she's gone from using things to meet her needs to using them to play. She can move around independently and make choices for herself."
When I ask Jo how she benefits from these sessions, she says that therapy keeps Coco's sensory modulation regulated and keeps her centred. That's good news but it wasn't what I meant by the question. It's as if Jo can think about herself only by using Coco as a reference point.
Which is entirely understandable and indicative of why Raukatauri is an important space for Jo and other parents in similar situations who rarely have the option to put themselves first. If Jo finds the time to have a shower she considers it a good day but at Raukatauri she can sit for 20 minutes and drink a cup of coffee while she watches Coco's therapy session and know that both of them will be treated with compassion and without pity.
"Our focus is on treatment for clients but we always share with caregivers and ask them for advice," says Ryckaert. "We make sure we give them opportunities to celebrate what the person they're caring for has done, because they rarely hear about that. They hear about the struggles and, 'You'd better start planning for adulthood and what are you going to do?' Here we can let them celebrate what their family members are capable of, and I always hope that they can then go out and share that with other people: today my child did this."
Music Therapy Week runs from Monday, September 16 - Sunday, September 22