Educational Support

Language is the easiest and quickest way for most of us to communicate, find out information and record ideas. We do this through speech, reading and writing. Of course it is not the only way, people also use facial expressions, gestures, symbols and so on. But for most of us and for the world around us, language is fundamental to how we live. For the child with LKS, the effect on language may be such that the world remains familiar but is subtly transformed so people use a language you can’t understand or speak yourself. You might try to guess what is happening from clues around you, but it will be very tiring and unrewarding.

Because language is fundamental to so much of what we do, the child with LKS needs a comprehensive programme to support them throughout the day, at home and at school. This is most effectively achieved if everyone is committed to strategies that help communication for the child. These strategies will vary with the child and disease severity, but will include common themes such as simplifying language and the listening environment, offering alternative communication strategies and providing visual reinforcement.

Children who lose the ability to understand environmental noise, will need special support and supervision. Certain situations will be more dangerous for them for example, as they cannot detect traffic noise or warning shouts. They may find crowded environments and group situations distressing, as they no longer have an auditory forewarning of what is about to happen, or what is expected of them (this can also be true for children who retain some language, but who find it difficult to pick out speech in a noisy environment). Even playing team games, such as football, where team members signal to each other verbally, can be difficult.

Some children become very sensitive to and intolerant of certain noises or even music. This is probably due to the brain processing the sound in an unusual way, such that it is perceived as an unpleasant stimulus. This may restrict family outings, as certain noises (for example, tannoy announcements) can be very distressing for the child.

The family provides the main care for the child. Parents are usually with their child most frequently, and are the best source of information about the child throughout the illness. They will often detect change in the child’s condition, before it is formally apparent. They accept and nurture the child, provide structure and sense to their world, and will be the main communication partners. They should be actively involved in decisions, and given appropriate information and support, including opportunities to learn special skills (for example, signing, PECS) that can be used at home.

In addition to language, the child with LKS often experiences difficulties in other areas (for example, behaviour, motor skills and non-verbal understanding). These must be tackled with an integrated approach that supports the child in all environments. Thus the local team must be able to draw on a wide range of services and skills (language, psychology, psychiatry, physiotherapy, occupational therapy, social work) in order to provide an appropriately tailored programme.

Therapists (speech therapists, psychologists, autism advisory service etc) are skilled at establishing a child’s strengths and weaknesses, and at identifying the best approaches to support the child. They will work closely with class teachers and assistants and many of their recommendations will be implemented through class work. Regular reviews are important to judge the success of any schemes and to monitor the child for rapid changes in ability. Rapid gains may merit intensive therapy to optimise the recovery phase. Rapid losses will mean that the child needs more support, perhaps even new ways of communicating, and any deterioration should be brought to medical attention.

A very informative factsheet on Special Educational Needs - England has been produced by the charity 'Contact a Family'. Click on the following link to download the factsheet: http://www.cafamily.org.uk/educatio.html.