If your child has Gorlin Syndrome it may be useful for you as a parent to advise teachers and other staff at school about your child’s educational and other needs, i.e. use of sunscreen and the need for regular hospital visits for monitoring and treatment of the condition.
UK schools have a Special Education Needs Coordinator (SENCO) whose role is to ensure every effort is made to tailor the individual needs, physical, emotional or educational, of a child within the school.
The Department of Education and Skills provides a framework for schools and educational organisations to ensure children receive the appropriate support they need. The framework indicates:
“Children with medical needs have the same rights of admission to a school or setting as other children. Most children will at some time have short-term medical needs, perhaps entailing finishing a course of medicine such as antibiotics.
Some children however have longer term medical needs and may require medicines on a long-term basis to keep them well, for example children with well-controlled epilepsy or cystic fibrosis.Others may require medicines in particular circumstances, such as children with severe allergies who may need an adrenaline injection. Children with severe asthma may have a need for daily inhalers and additional doses during an attack.
Most children with medical needs can attend school or a setting regularly and take part in normal activities, sometimes with some support. However, staff may need to take extra care in supervising some activities to make sure that these children, and others, are not put at risk.
An individual health care plan can help staff identify the necessary safety measures to support children with medical needs and ensure that they and others are not put at risk.