School age children with retinoblastoma
If your child is of school age when they are diagnosed with retinoblastoma, or during their treatment, it’s really important to keep the staff at their school informed about what’s going on. Clear communication from the start will help to ensure the best support for your son or daughter throughout their recovery. A good parent-teacher relationship will really benefit your child and also help any siblings to feel welcome and cared for at school.
It can really help to identify a suitable person to liaise with the hospital, family and education staff on your behalf to maintain the flow of information. Your specialist retinoblastoma nurse (CNS), CHECT support worker, SENCO or social worker may take on this role.
If your child is to receive treatment over a long period of time, make sure the school has frequent updates on their medical condition and emotional wellbeing. They will then discuss education during absence and a proposed date for returning to school.
Encourage communication from classmates during their absence. Cards, telephone calls, FaceTime / Skype and class photos are all simple but good ways to help your child feel involved with school life.
A new nursery/school
This can be a difficult transition period for any child and if they have retinoblastoma there can be even more issues to consider, depending on how they’ve been affected by the condition and the treatment they are having, or have had.
Visiting nurseries and schools and talking with the staff will allow you to assess how confident you feel about their ability to meet your child’s needs. The needs of your child will vary according to the degree to which retinoblastoma has affected their vision. If your child is still having treatment you may have other considerations
It’s important to prepare a new nursery and/or school ahead of time and give them the all the necessary information on your child’s condition and what to expect. Provide them with a simple background to retinoblastoma and an explanation of how it has affected your child. Some parents find it useful to repeat this at the start of each academic year with the new set of teachers involved in your child’s care.
You can print factsheets about retinoblastoma and specific treatments on the resources page.
You may find it useful to involve your local visual impairment (VI) officer or sensory needs service at this stage – this is not always necessary but each child will have different requirements.
If your child is nervous about making the transition from a lower school to a middle, high or secondary school, ask if they can go in the same class as a friend for some extra support.
Managing vision problems
While children with monocular vision (sight in one eye only) and good sight in their other eye usually adapt well, there will still be some considerations for their nursery/school to take into account. This leaflet on monocular vision may help you.
Depending on your child’s sight limitations, they may need to be seated to one side of the room to get a full view of the classroom, to avoid the need for awkward head adjustments. Good lighting will also avoid the need for straining.
If the vision in their remaining or second eye is impaired, proximity to the board and being able to hear the teacher clearly will be a priority. Your VI (visual impairment) teacher should assess this for you, and make teachers aware of any visual aids which may help and the best position for your child. Please let your CHECT support worker, Rb orthoptist or CNS know if you don’t have a VI teacher.
Please have a look at our leaflet on early years and visual impairment for more information.
Managing an artificial eye
It will help your child if their nursery/school staff are fully prepared for any problems that may occur. Their teacher may not have seen an artificial eye before and may not know what to expect, so take time to explain your child’s condition to them fully. Your Rb team can also offer support. They will be happy to liaise with school staff on your behalf and provide them with literature.
Check out our artificial eyes school action plan to help make sure that you and your child are well prepared.
Taking part in sports
Sport can be an important way to develop a child’s confidence, social ability and sense of belonging through teamwork. If your child has a visual impairment the school should ensure inclusive activities are provided so that no-one misses out on the fun.
Speak to your SENCO, VI teacher or CHECT support worker if you have any concerns. If your child has had an enucleation, once they have had the all clear to take part in sports, there is no need for an artificial eye to be removed for activities.
There are some safety considerations when taking part in sports:
- If your child has had radiotherapy, there may be an increased risk of retinal detachment. Sports which may incur a blow to the head should be considered with caution.
- Your child should not swim if they have a Hickman line fitted or before the socket has healed following enucleation surgery.
- If your child has had an enucleation, goggles should be worn for swimming as an artificial eye will not float if it comes out.
- Children with monocular vision are advised to wear protective eyewear – either plain (polycarbonate) lens glasses with damage-proof frames or sports goggles for sports and some other activities such as woodwork, from reception class onwards.
It’s very important that children with monocular or reduced vision do what they can to protect their remaining vision. The Rb teams at Birmingham Children’s Hospital and the Royal London Hospital have produced some useful advice on how best to make sure your child is protected.
- Birmingham Children’s Hospital eye protection leaflet
- Royal London Hospital’s tips on eye safety and using protective eyewear
If you’re thinking of buying protective glasses for your child, some medical professionals recommend buying ones with special polycarbonate shatterproof lenses, fixed in damage proof frames – your Rb team may be able to give you a basic NHS prescription which should cover part of the cost.
If you have any questions on how best to protect your child’s eyes, the Rb teams at London or Birmingham are always happy to answer them wherever possible.
We’re often asked by parents whether their child needs to wear swimming goggles and whether they should swim at all with an artificial eye – the answer is yes, to both!
Goggles can protect the eye if it comes out while your little one is swimming. Some children find the traditional goggles can put unwanted pressure on the socket though. Aqua Sphere goggles have been recommended by several members because they have a wider frame, like a diving mask, offering better comfort and increased visibility.
Talking to other children about visual impairment
Children are a curious bunch and will ask questions, so it will help to talk to your child in advance about what they want people to know.
- Try and encourage them to be as confident as possible with their answers as saying nothing at all may sometimes provoke further questions. Make this an ongoing discussion throughout their school life – it’s likely to change as they grow older.
- Work together and focus on how and what they want to disclose and when. Let them take the lead wherever possible.
- Equip your child with answers they are happy to give when classmates ask questions. Some phrases children like to use include:
– I have two eyes, but can only see with one.
– I have a magic/special eye that doesn’t see.
– I have two eyes but only one that moves.
– My eye was poorly so I have a new one.
- Remember, your child is not obliged to tell classmates about their artificial eye or visual impairment – let them decide when and if they are comfortable sharing that information.
Think about what your child will do or say if they face any negative comments from peers. Maybe find out if there is any support on hand from a fellow classmate in case this happens. If you’re not sure about how to approach this, contact your Rb team or CHECT support worker.
If you find that your child is becoming upset by undue attention or bullying, you should speak to the class teacher or headteacher. The school should have an anti-bullying policy in place and steps should be taken to make sure that your child is not picked on by others.
In this event, it may be helpful to contact your Rb team for advice on how best to tackle the situation. Often a simple explanation of why your child has an artificial eye is enough to end any negative comments.
Some retinoblastoma treatments may have an impact on aspects of your child’s education. Here are a few things to think about:
- Handwriting – as a child turns their head slightly to compensate for loss of vision this can misalign their shoulders and cause written lines to slope.
- Reading and comprehension – children with a vision impairment may often read at a much slower pace than their friends. If your child is having difficulty reading standard size print, discuss this with the school and your vision impairment teacher. You could look for large print or audio resources and a referral for low vision aids (LVAs) may be useful.
- Body language – children with reduced or monocular vision may have difficulty picking up body language and facial expressions. They may seem to constantly interrupt another child who has just begun speaking, but could be missing visual indications on their blind side which another person gives in the moment before they speak. Some children may be very quiet in class because they are worried of being seen to interrupt.
Visits from professionals
Your retinoblastoma teams at the Royal London Hospital and Birmingham Children’s Hospital are happy to offer support with any matter regarding retinoblastoma. They can provide your school with a comprehensive guide for teachers to use and can act as a useful liaison, taking the pressure off parents having to deal with potentially awkward situations with teaching staff.
If necessary, someone from your Rb team may go into the school and help staff tackle any problems your child is experiencing. They can help and advise on:
- Caring for your child’s artificial eye.
- Helping your child know what to say to others.
- Additional support in school.
- Dealing with negative comments.
- Tackling bullying.