School and nursery

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.

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 may find it useful to involve your Qualified Teacher of Children and Young People with Vision Impairment (QTVI) at this stage. This is not always necessary but each child will have different requirements. Please note, children with monocular vision (sight in one eye only) will not have a QTVI if they have good sight in their other eye eye.

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 and good sight in their other eye usually adapt well, there will still be some considerations for their nursery/school to take into account.

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 QTVI 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, retinoblastoma orthoptist or CNS know if you don’t have a QTVI.

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 retinoblastoma team can also offer support. They will be happy to liaise with school staff on your behalf and provide them with information.

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, QTVI 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:

• 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 contact sports and some other activities such as woodwork. The retinoblastoma teams at Birmingham Women’s & Children’s Hospital and the Royal London Hospital have produced some useful advice on how best to make sure your child is protected:

Birmingham Women’s & Children’s Hospital eye protection leaflet

Royal London Hospital’s tips on eye safety and using protective eyeware

If you have any questions on how best to protect your child’s eyes, the retinoblastoma teams at London or Birmingham are always happy to answer them wherever possible.

Talking to other children about visual impairment

Children can be curious and will ask questions, so it will help to talk to your child in advance about what they want people to know.

• 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. 
• 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 may 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 had to have a new one.
• Make this an ongoing discussion throughout their school life – it’s likely to change as they grow older.

Think about what your child will do or say if they face any negative comments from peers. If you’re not sure about how to approach this, contact your retinoblastoma team or CHECT support worker.

Bullying

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 retinoblastoma 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.

Visits from professionals

Your retinoblastoma teams at Birmingham Women’s & Children’s Hospital and the Royal London 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 retinoblastoma 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.