Now, seven years later, music therapist Sarah Payne from Chroma describes early, encouraging signs that music therapy might finally provide John a way to communicate with his family and carers.
"Music therapy is an established psychological clinical intervention using rhythm, melody and tonality to create a therapeutic relationship with the injured person.
Traditional music therapy is psychodynamic and focuses on reducing anxiety and agitation and aiding relaxation. Neurological music therapy (NMT) is more functional – to elicit purposeful responses and to promote awareness – basically, to see if I can open up John's world.
John is clearly motivated by music. We always sing the "Hello" song to begin with, so John knows a session is underway. We put a guitar by his left foot, as this is where he is most responsive, or under his arms, so that he can feel the vibration as well as hear the song.
Science tells us that providing both these forms of sensory stimulus makes it easier to access the relevant parts of the brain. Sometimes, John will move his left leg and foot in response to the guitar, saxophone and drum. I try this on both feet, but it is normally the left foot where we see a reaction
Early on, I played the guitar in time with his breathing and noticed that the rate slowed as I played on. He clearly has some form of awareness if he can be agitated, so there is great potential to alleviate this agitation through music.
It is vital that rather than things always being done to him, we do things with him. This is hugely beneficial for his sense of self and well-being and establishes a connection as he experiences the synchronicity through by attuning with the guitar - similar to when you're walking with someone and you match your rhythm to theirs. Once, I noticed that his heart rate reduced from 112 to 82 bpm. Similarly, when I played a more energetic song – Row, Row Your Boat - it spiked.
John seems to prefer the guitar to the piano. It may be that he finds the piano too arousing. If the guitar calms him down, then it definitely benefits his wellbeing. There is the potential to introduce music into his everyday life when he is agitated or his stress levels are high. John's parents also play him his prayers before bed, and although it is not the guitar, it also seems to have a calming effect.
Hopefully, we can also incorporate music into his stretching routines. For example, if he is stretching his arm up, we could make it that he is lifting his arm up to hit a drum, rather than just stretching, which gives him a purpose and makes it enjoyable.
John has been able to vocalise - not just a cough or a yawn, but an actual sound. Particularly when I use the saxophone, a harmonica and also recordings of his mother's voice.
The next stage is establishing a purposeful response. More than once, John has vocalised at the start of the session with the hello song. Then I pause in the song and wait for any micro-reaction, such as a change in breathing or eye movement and when I receive a change, I continue. He has responded in several sessions, usually with his breath, mainly heavy breathing in a gap. I take this as a response to continue. He usually presents as listening rather than heavy breathing while I play.
We regularly see John's heart rate drop by around 10bpm between the beginning and end of a session. Recently he reacted to the saxophone and also the sensory song Tiny Tim where we use a water bowl and bubbles. We have seen John track the bubbles with his eyes. He has also retracted his left arm and grimaced during one session using the water bowl which we interpreted as dislike. We paused and moved onto something else as a result, explaining to him why we stopped. The hope is that it might act as a stimulus for that kind of physiological process where you go from just breathing to vocalising.
We have already seen some progress in terms of choice making when John looks towards an object of choice. If we continue to make progress with this, he may be able to make a choice that empowers him to communicate – and this is massive. It could enable him to decide everyday things, like what top he wants to wear in the morning.
If he is able to control his left foot then it enables him to use it to communicate; he could use it to have a voice and a say in things like yes and no. Seeing it regularly now, I feel like I am getting to know him more. If he has some control or awareness over his limbs, this is a real access point and a potential form of communication.
Initially, I thought it could just be a twitch, but the fact that he did it in more than one situation gives us hope that he is trying to respond to the stimulus – which is an incredible breakthrough.
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