Welcome to With Music in Mind, a set of resources for families who have a child with a visual impairment associated with neurodegenerative disease. In the UK, these resources are linked to a free service of the same name offered by The Amber Trust.

Sounds of Intent

The resources consist of 38 cards that are based on the thinking set out in the Sounds of Intent framework. For more information visit the website The Sounds of Intent framework sets out how children develop musically. It identifies three ways in which they engage with music:

  • Listening
  • Playing and singing on their own
  • Making music with others

And it identifies six distinct levels of engagement that usually arise as a child grows up. Angela Voyajolu’s research at the Applied Music Research Centre at the University of Roehampton has shown that these are very broadly associated with age bands, although there is a good deal of overlap between them.

Sounds of Intent framework of musical development

LevelPredominant form of engagement with sound and musicAge
Level 1Before hearing gets goingBefore 3 months before birth
Level 2The sensory stage: sound is heard or made as pure soundFrom 3 months before birth to 9 months
Level 3The stage of simple patterns: anticipating and copyingFrom 9 months to 15 months
Level 4Hearing and creating groups of sounds as meaningful units of musical information, such as ringtones, motifs and riffsFrom 15 months to 33 months
Level 5Intuitively understanding simple musical structures; singing short songs in time and in tuneFrom 33 months onwards
Level 6Appreciating music as a language of the emotions; performing expressively within a familiar cultureIn the teenage years

Neurodegenerative disease and music

Research undertaken by the Applied Music Research Centre suggests that the capacity of children with neurodegenerative disease to engage with music will depend both on their age and how old they were when their illness began. Although visual impairment should not have a negative impact on a child’s developing musicality (in fact, it may cause the child to bring a greater focus to bear on sound and music, and thereby enhance their musical skills), other areas of decline – particularly the capacity to understand and to move – are likely to have an adverse effect.

So the highest level of musical engagement of a child whose cognitive decline began at the age of two, for example, would be likely to be Level 4 of the Sounds of Intent framework: hearing and making groups of sounds. The musical ability of a child whose ability to learn, to remember and to reason was largely unimpaired until she was five, on the other hand, would probably peak at Sounds of Intent, Level 5: singing whole songs in time and in tune. In contrast, there would be no limitation on the music-developmental trajectory of a young person whose disease largely took effect from his early teenage years, and who was able to appreciate music, create pieces and perform them in a mature, expressive way.

The crucial point, however, is not the constraints that the disease puts on a child’s musical development but the fact that the decline in their ability to engage with music may well be less marked than the deterioration of abilities they experience in other areas. This has profound consequences for the potential role of music in the lives of children and young people with and without visual impairment living with neurodegenerative conditions such as Batten disease, juvenile Tay-Sachs disease, Rett syndrome and others.

As is the case with adults who have dementia, it seems that the capacity to make music by singing, in particular, may outlast other abilities as they decline, particularly speech. Playing instruments is possible while children can still make and control the necessary movements – indeed, making music with a regular beat can help sustain movement for longer than would otherwise be the case. And as moving becomes more difficult, both regular and assistive technology, in the form of gesture-sensitive touchscreens and beams, can enable children and young people to carry on making music on their own or with others. Most importantly, though, it seems that the capacity to derive pleasure from listening to music may persist to the very end of a child’s life.

Using music pre-emptively

Since it is much easier to sustain an ability rather than try to regain it once it has fallen out of use, it is best to engage children and young people with music in a pre-emptive way. This means helping them acquire skills that will be useful later on before they are needed.

A good example is to introduce them to the ‘micro-songs’ that are available on The Amber Trust website. These short tunes are associated with functional, day-to-day language, such as ‘No thank you’ and ‘Yes please’. The children are likely to be able to sing or hum the songs even when they can no longer use words alone. This will enable them to keep communicating by using their voice for longer.

Sometimes there can be a reluctance to introduce pre-emptive skills such as these on the grounds that they may seem patronising to young people who, for example, can still speak. This can be addressed, though, by setting up an age-appropriate context in which to teach the songs. They could be introduced on the pretext of singing to a young relative, for example.

Above all, giving a child rich musical experiences when they are still young will lay down memories that may well survive late into the progression of the disease. And recordings of children singing or playing can be treasured by them when listening is their main way of engaging with music, and by their family and friends in the future.

Using the cards

The cards are intended to give parents, carers, teachers and therapists ideas for musical activities that they can do with their child. No special musical skills are needed.

The ideas set out on Cards 1–15 suggest ways of encouraging children and young people to engage with music for its own sake, whether through listening, making music, or participating in musical activities with others. Cards 16–38 set out ways of using music to promote learning and remembering, physical activity, socialising, emotional regulation, communicating (receptively and expressively) and understanding the world around them.

Cards for musicNumbers
Playing and singing5-11
Making music with others12-15
Cards to promote wider development and wellbeingNumbers

The best way of using the cards is to look through them and choose two or three that seem best suited to a child’s levels of musical and wider development, and their interests and motivations. Families in the UK who are participating in the With Music in Mind scheme will receive an introductory visit from a specially trained practitioner who can help parents and carers decide what will suit the child best in terms of specialist music provision. This may involve tuition on an instrument or singing lessons, or it may entail having periodic visits with someone from The Amber Trust who can assist families in engaging with their child through musical activities that nurture communication and social skills, help them to express their feelings and regulate their emotions, and foster understanding and memory. A child’s musical needs will alter as they grow up, and their abilities and interests change. The Amber Trust is there to offer support throughout that journey.

More information

To find out more about how music may be able to help children with neurodegenerative disease, a report of the three year research project, The potential role of music to enhance the lives of children and young people with Batten disease is available from The Amber Trust.

The Amber Trust
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Wimbledon Park
London SW19 6JF

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