Help children with retinoblastoma reach their full potential

Post date: 
Monday, 18 January 2016
School children in a classroom setting raising their hands.

Specialist Teacher Adviser for Visual Impairment, Marie Lloyd, shares her thoughts on how school staff can help children with Rb reach their full potential.

I am writing this wearing two hats. I am the mum of a 16 year old with bilateral retinoblastoma (Rb), who had every medical treatment possible and lost both eyes by the age of five. I am also a Specialist Teacher Adviser for Visual Impairment (STAVI), working in my local authority with families, children, schools and other professionals to help meet the needs of children with visual impairments.
Rb primarily strikes in young children, and those starting school will be undergoing treatment or intense monitoring. As a parent, you are so focused on getting your child through the treatment, that your child’s education may take a back seat. However, what can then get lost is the support that they need to overcome the barriers of having a visual impairment at a time when they are rapidly developing key life skills.
Rb and treatment can leave children with a range of visual impairments, and their vision is also likely to change throughout treatment. Every child is an individual and there are no hard-and-fast rules for meeting their needs. I once visited a child at school who I was told had vision in one eye only, yet when I observed her in class I noticed she moved her head around a lot when reading. It turned out that she had scarring on the retina of her good eye too, which meant she had to work much harder to piece visual information together. Following this, strategies were introduced to reduce the amount of material she had to scan, together with short breaks to rest her eyes and double line spacing.
Every child should be observed carefully on their use of vision, in addition to the usual functional vision tests by STAVIs. All schools should be working with their local STAVI, who will advise how best to meet the child’s individual visual learning needs. Recommendations can then be made to help remove any visual barriers, such as teaching strategies, modified and adapted resources, classroom environment considerations (e.g. seating position, lighting), additional curriculum (e.g. ICT, pre-braille skills, motor skills, life skills) and specialised equipment (e.g. an iPad to view the whiteboard).
It is also important to get as much information as possible from the child’s local and Rb ophthalmologists (there are two specialist centres in the UK), which should be updated regularly as things change. Parents can provide valuable information too, but it’s important to remember that this can be traumatic for them as well. What can sometimes get forgotten is the psychological and emotional impact on the whole family.
The impact on the child’s social and emotional development also needs to be considered. At school, they may need more time off for hospital appointments, even after the Rb tumours have stopped developing. These children often have long-term or permanent side effects from the treatment to deal with too. Some children will have artificial eyes, which can be an initial worry with schools. My daughter’s spare artificial eyes have gone into schools to reassure staff, showing them what they look like and how to clean them. The children are often very good at putting their eye back in or parents are always willing to pop into school to help. Visual impairment awareness training by STAVIs for both peers and staff helps address these concerns and gives everyone a greater understanding of visual impairment.
All children are unique and a child with Rb is no different. It is important to work closely with the family and professionals to find out how Rb impacts the child in your school, so that you can help them feel comfortable in their learning environment. As the child transitions through school and moves to college, this information should be shared and updated, so that they can go on to lead a fulfilling life.
Written by Marie Lloyd
Specialist Teacher Adviser, Visual Impairment (STAVI)
Portsmouth Local Authority
If you would like more information, please visit our retinoblastoma webpage.
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