School Life and Retinoblastoma
Retinoblastoma can disrupt education, social and cognitive development, during and after therapy.
Most children with retinoblastoma have impaired vision.
Children treated with radiotherapy and/or high doses of chemotherapy may develop long term neurotoxic effects, impacting their learning style.
Repeated isolation may also delay the child’s development of social skills and self-confidence.
Hospital visits, treatment side effects, and loss of vision can impact the child’s ability to fully participate in daily school life.
Most children with retinoblastoma are under five years old at diagnosis, but many will be attending preschool, or preparing to start school. Many children find beginning or returning to school a great relief, but some struggle with the experience and need more emotional support to cope.
School offers a place of fun, stability and routine – a chance to escape the uncertain medical world the child has come to know, However, changes in vision or appearance may cause intense anxiety. Transitioning between primary, junior and senior school can also be an especially challenging time for children.
Many children with retinoblastoma experience some degree of difficulty in school, but most problems can be resolved with planning and solid communication. Sensitivity is crucial in developing the child’s confidence and self‑esteem.
Whatever stage of treatment or education your child is at, you can help her and the school adapt to new circumstances. Working together, you and the teachers can ensure your child receives all the necessary resources available to assist her with her education and independent living.
Learning disabilities resulting from cancer therapy are often invisible, especially when the child has high intellect, as is common in retinoblastoma survivors.
Good preparation is vital well before your child joins or returns to school. This will enable teachers to provide the best support to help her reach her full potential.
Children should not be excluded from activities unless a doctor instructs this for medical reasons. Supporting the child is vital to ensure she feels welcome, involved and respected, and to build confidence.
Teachers may worry about what your child looks like without an eye, and what to do if the eye falls out. Educate and prepare them so they can support your child with calm sensitivity and understanding.
If your child will be receiving chemotherapy while attending school, explain the associated risks of infection, and work with the school to develop a clear infection control plan.
Good communication with teachers is essential to support your affected child or siblings through treatment and recovery if they are of school age.
This is a handy quick guide for teachers of children affected by retinoblastoma. You will also find several further reading resources linked from this page.
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