Find out what you can about the child or young person from their parents or the school
Do they know the child’s eye condition, their level of vision and the prognosis for their sight? What are the implications of the child’s visual impairment for their day to day functioning?
What other disabilities or medical conditions are associated with the child’s neurodegenerative disease? How do these conditions affect the way that they interact with people and engage with their environment?
Find out about the child’s musical experiences
Does the child already have music sessions, or have they had in the past?
What are their aspirations for the future?
Meeting and greeting
Saying hello for the first time
Speak directly to the child or young person when you first meet.
It may be appropriate to shake hands or touch them on the arm as you greet them.
Teenagers who have recently lost their sight may be uncomfortable in formal social situations, so do all you can to put them at their ease. If necessary, consciously take the lead in making small talk.
Talking in front of a child or young person
Avoid talking about the child or young person in front of them.
Sensitive matters may well be best dealt with out of earshot, but remember, blind children, including those neurodegenerative disease, may well have more acute hearing than you!
Working with parents, teachers and carers
Working as a team
It’s particularly important, when working with a young person who is visually impaired and has neurodegenerative disease, that parents and professionals work together as a team – you are partners in a shared enterprise.
Above all, listen carefully to the young person’s ideas and preferences, and balance these carefully with the views of parents, teachers or carers.
If you have any concerns about a child or young person’s welfare, you should speak in the first instance to the person responsible for safeguarding in your organisation.
Working in a child or young person’s best interests
All professionals working with a child or young person, including music practitioners, have an obligation to work in that person’s best interests. All decisions and actions that are made in relation to a child or young person should be driven by that duty.
Visually impaired children with neurodegenerative disease are especially vulnerable and so extra care needs to be taken by all those working with them and caring for them to ensure that they are safe.
A parent or a member of staff should be present at all times during sessions.
Because blind children and young people with neurodegenerative disease sometimes need physical contact in order to relate to other people and to learn, it is particularly important that you seek the advice of parents, teachers or carers in working with a child with regard how best to relate to them.
It is important to take into account a child or young person’s wishes, which may well be expressed non-verbally, through vocalisations, facial expressions or body language. Parents, teachers and carers are likely to be able to interpret the child or young person’s non-verbal communication strategies best.