4. What are the educational implications for those diagnosed with CHARGE Syndrome?

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Teachers and team members must be aware that it may be appropriate for the child to wear sunglasses during times when there is bright light. As a result of the coloboma the eyes may be highly sensitive to light. Motor coordination may be affected as a result of poor vision because the child is not able to see what other things are going on around him/her. The visual field may not be complete resulting in missed information if presented out of the visual field. Teachers should be sensitive to presenting information from different angles that the child may see more clearly (Jones & Dunne, 1988).

Hearing should be addressed as well. The child may have a hearing loss that is sensorineural, conductive, or mixed with varying degrees of loss. Each child’s loss must be approached individually. Establish communication should be done early on. The child with CHARGE may be "hampered" because of the inability to communicate because the hearing loss has caused a language delay. The sooner that all "deficits" are detected the earlier the team can begin to address the situation and teach the child (Davenport, 1988).

Insights:

In an educational setting all involved must be aware of the special needs a child with CHARGE may have. Vision loss, hearing loss, and mental retardation are associated with CHARGE Syndrome. Not only must each area be examined separately to identify needs specifically related to that area, but also one should consider the disabilities and how they affect the child as a whole.

Teachers of children with CHARGE Syndrome have to be aware of all areas affected by the disease. Because CHARGE can affect the eyes, ears, and brain it is most important that all members of the educational team (teacher of the deaf and hard of hearing, teachers of the visually impaired, audiologists, pediatricians, parents, etc.) Taking each of these into account is vital to the success of the child and family in an educational setting.

Teachers also must be aware of how to teach parents how to work with their children. Parents are often in shock when their child is diagnosed with one debilitating problem. With several areas of disability families can be much more traumatized. It is imperative that teachers remain sensitive to parents and families.

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