Starting or changing schoolPreparation
Preparing yourself and your child for nursery or school starts with looking at your local options and deciding what is best for your child. 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. In many unilateral cases where one eye is not impaired the child will probably have accepted the artificial eye as something normal and will be getting on with life.
If your child has both eyes affected and impaired vision, you should have received support from the Visual Impairment Teaching Unit or similar service within your Local Education Authority and started the process of assessing his/her educational needs before attending nursery. One-to-one support in varying degrees may be needed from nursery, right through school and should be reviewed annually. The ‘Support Assistant’ who is helping your child will work with the teacher to prepare your child’s Individual Education Plan.
It is important to prepare the nursery and school and give them the background to your child’s condition as to what to expect in certain situations. A Special Educational Needs Co-ordinator (SENCO) should be involved in assessing your child’s needs from the outset.
For your own peace of mind and the confidence of your child, make arrangements to meet the class teacher and chat to him/her about your child’s needs. It would be advisable to check the outcome of the SENCO’s assessment to see if everything you know about your child has been taken into account.
The school or nursery will need to have a simple background to Retinoblastoma and knowledge about the degree to which it has your affected child’s vision and well being. Many people may have misconceptions about cancer and this is a rare form which our short leaflet “What is retinoblastoma?” will explain clearly. We have a booklet called Understanding Retinoblastoma for those who would like a more in-depth understanding.
Seating position in the classroom
In most classroom situations, practical arrangements should be made to take into account that your child has an artificial eye or impaired vision. Depending on which eye is artificial or has no, or limited vision, your child will need to be seated to one side of the room to get a full view of the classroom. This should be arranged so as to avoid the need for awkward head adjustments and to allow your child to participate in the general classroom activity.
If the vision in the other eye is impaired, the proximity to the board and being able to hear the teacher clearly will be a priority. The SENCO should assess this and make the teachers aware of any visual aids and the best position for your child in a classroom. The quality of light in the room will be another issue to address. Try to ensure that your child never sits directly in front of bright light and that the clarity of print is improved by the way light falls on desk work. Straining to see and hear will affect your child’s posture and could create a build up of tension leading to headaches and muscle pain. Hopefully these arrangements can be made without drawing attention to your child.
At nursery learning activity is much more fluid and the other senses of touch and hearing can play a more important role in learning at this age. The reassurance and confidence of a voice is important in ensuring that the child has followed what is going on and is taking part is important. Similarly, in dealing with an older child, the confidence of a teacher’s voice can determine the attitude of the class to that child and so it is important to prepare the teacher.
Managing an artificial eye
Information that prepares the teachers for situations which can arise with an artificial eye will make it easier for your child to cope. It is a good idea to take in an artificial eye and show them exactly what it looks like out of the socket and dispel any misconceptions and fears. The teachers may not have any idea of what the exposed socket looks like and a simple explanation that it resembles the skin on the inside of the mouth may allay any fears that it is unsightly.
A simple written instruction about wiping the lids of the artificial eye to remove discharge will be helpful. You could demonstrate how to wipe the lids and eyelashes with a clean piece of wet gauze (as cotton wool may leave strands of fibre that can cause irritation) this would give confidence to the teacher if needed. At school you may prefer that the teacher encourages your child to do this for him/herself. Teachers are not covered to remove or replace artificial eyes, as it is deemed an invasive procedure. If there is a school nurse on site who is competent and happy to deal with the artificial eye then he/she is covered.
You need to agree with the teachers what you want to happen if the eye falls out, turns round or is dislodged. Many parents of young children prefer to go into school themselves to take care of it, so a contact number of an available parent/relative will have to be on record for that situation. It may be wise to advise the teacher of the likely reaction of your child if the eye should come out, to minimise fuss and avoid the curiosity of the other children. At nursery the support given to your child may be such that the staff are confident enough to put the eye back in. However, this depends on the relationship you have built up with the nursery and the training they are given.
Inclusion in sport can be even more valuable than usual in restoring a child's confidence, sociability and sense of belonging brought about through teamwork.
Once the child has the all clear from the ophthalmologist treating them they are able to swim, trampoline, play football etc. There is no need for an artificial eye to be remove for sports and it is helpful if minimum fuss is made. Children who /ave had an eye removed may need extra support with hand-eye co-ordination, depending on how much sight they had already lost in the eye which was treated or removed. It is a process of adjustment and games such as tennis or catching a ball may be difficult at first. This is likely to affect their confidence so sensitivity is essential.
Children with more severe visual impairment may find joining in sports even more challenging and rather than being left on the sideline, the school should be encouraged to find alternative activities for such children to join in with.
If a child has had radiotherapy, there may be an increased chance of retina detachment so sports which might incur a blow to the head should be considered with caution.
The child should not swim if s/he has a hickman line fitted or before the wound has healed following enucleation surgery.
Interest from other children
At some stage, you need to address the curiosity of other children in the class. Explaining the condition to a class from the start often dispels that awkward situation and future problems. Talk this through with the teacher if you think it would help or if undue attention becomes a problem. If you or the teacher do speak to the class, use simple, reassuring language.
If you find that your child is becoming upset by undue attention or bullying, you should speak to the teacher or headmaster. 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.
Older children already at school
In the confusing and emotionally exhausting days after diagnosis, informing the school does not occur to most parents. However, this should be considered a priority if the affected child or siblings are of school age. Good communication from the start will help the development of invaluable collaboration through treatment and recovery. A good parent-teacher relationship will go a long way towards ensuring the affected child and any brothers and sisters feel welcome and cared for in the school environment. You may like to identify a suitable person to liaise with the hospital, family, and education staff, to maintain the flow of information between yourselves, the hospital and school. This person is called an advocate. The hospital social worker will frequently take on this role, but a nurse within the hospital or school, class or head teacher, SENCO or educational psychologist may also help. When considering your choice of advocate, bear in mind the following: that they have the ability to communicate effectively, are well organised and have a good knowledge and understanding of the education system. Your personal confidence and trust that the individual will work in the best interests of your child is important.
If your child is to receive treatment over a long period of time, frequent updates of your child's medical condition, treatment and emotional wellbeing should be given to the school, who can then discuss education during absence and a proposed date for returning to school. If your child is absent from school for an extended period of time, staying in touch with his teacher and classmates will be a vital component in maintaining his/her personal wellbeing.
Make sure the school is well informed about retinoblastoma by providing the teacher with the CHECT resources for schools. There are a lot of misconceptions about cancer and little knowledge about Rb within the community, so you need to do what you can to dispel some of the myths. You could try arranging for a paediatric oncology nurse or social worker to talk to the class about what is happening to their classmate, and how they will look and feel when they return. There needs to be ample opportunity for the children to ask questions, as this will help to put fear to rest and clear up any misconceptions classmates may have.
Welcome and encourage communication from classmates. Cards, telephone calls, class photos and taped messages are all simple ways in which the affected child can continue to feel involved with school life.
Contact Cancer Bacup or CLIC Sargent and ask them to send a comprehensive list of the printed resources and outreach programs available for teachers and parents of children with cancer.
Treatment and academic performance
State of the art treatment for retinoblastoma has created one of the best success stories to emerge from the world of childhood cancer. However, some treatments can have an impact on education and teachers and parents must remain on the alert to allow for early intervention of any potential learning problems as they emerge.
Here are some associated with visual impairment.
- Handwriting and spelling. Be aware of the child’s dominant hand in relation to the affected, or most affected, eye. For example, if a child is left-handed, he will already have difficulty seeing what he is writing as the hand moves ahead of the text, as opposed to behind it when writing with the right hand. If a left-handed child has also lost vision in the left eye, the difficulty of writing will be compounded as the child turns his head to better see his work. A right-handed child with loss of vision in the right eye may also need to turn his head to view his work. The action of turning one’s head slightly misaligns the shoulders, causing written lines to slope.
- Moving eye. A number of children with retinoblastoma have difficulty focusing as their eye moves around almost continuously. These children may have difficulty forming straight lines, and their writing may “wobble”. Encouraging the child to write more slowly, or use print rather than joined up text may help to improve legibility.
- Reading and comprehension. Children with visual impairment often read at a much slower pace than fully sighted peers. If a child is having difficulty reading books written in standard size font, you may need to consider seeking large print or audio resources instead. If a child has difficulty explaining the plot of a story he has just read, it may be that his concentration was applied to the actual reading rather than the subject matter due to difficulty visualising the text. Try asking the child to read a larger print book, or listen to a story on tape. If the problem persists, it is likely some other form of learning disability is emerging, and you should seek advice from the SENCO at your child’s school to address this.
- Reading visual language. Children with reduced vision frequently have difficulty seeing and interpreting body language. For example, in circle time, a visually impaired child may seem to constantly interrupt another child who has just begun speaking. But he is probably simply missing the very slight visual indications that another person gives in the moment before they speak.
- Planning and organisation. This is crucial for children with a visual impairment, who may require longer periods of time to complete work. The child may require guidance to develop and improve organisational skills, but a well organised child will be more productive in the long term.
- Social maturity and social skills. Treatment may have necessitated isolation from other children, at a time when the young child should be exposed to other children in order to develop essential social skills. If the affected child appears to have difficulty in the social environment, you may wish to consider approaching a psychologist for advice.
Resent research in the USA suggests that some children treated with chemotherapy or radiotherapy could be affected in other ways. The research does not relate to retinoblastoma treatment specifically and of course many children who have not been treated also display these symptoms so this should be born in mind. Some of the issues covered are:
- Understanding, remembering and processing mathematical concepts and facts.
- Memory and information retrieval skills
- Attention deficits
If you are interested in reading more, you may find the publications (from the USA) listed at the end of this page useful.
Teacher and pupil comments. If the teacher suggests that your child is simply not attentive in class, or needs to work harder, it is possible that other learning difficulties are being missed. Many learning disabilities are invisible, especially when the child concerned has a high level of intellect (such as is common in survivors of retinoblastoma). Paying attention to your child’s comments about his/her inability to keep up in class, or lack of enthusiasm for school could also alert you to other unidentified learning difficulties.
If you are concerned, ask to speak to the school’s SENCO, and request a psychological assessment to be undertaken and/or begin the statementing process if it is thought that additional support would be helpful. Taking the first steps in the process is often hard for patents and teachers because children affected by retinoblastoma treatments usually have excellent reasoning skills and often display above average intellect. However, it has been suggested that some may perform less well in subjects such as maths and science, which require good vision, rapid processing skills, short-term memory and sequential operations.
Many difficulties are frequently eliminated or vastly improved by using large print or audio resources, employing memory enhancement tasks, eliminating or increasing the length of timed tests, improving organisational skills, allowing the child to use a computer or typewriter in class, and acquiring a classroom assistant for the child in subjects such as maths and science.
Deasy-Spinetta P - Editor, (2004), Educating the Child with Cancer, A Guide for Parents and Teachers. Candlelighters Childhood Cancer Foundation, Kensington MD, USA.
Available free to parents and teachers, from Candlelighters.
http://www.candlelighters.org/bookeducating.stm
Janes-Hodder H, Keene N, (2002, 2nd Ed), Childhood Cancer: A parent's guide to solid tumor cancers, O'Rielly, Sebastopol, CA. USA.
Visit http://www.childhoodcancerguides.org for more information.
Keene N, Hobbie W, Ruccione K, (2000), Childhood Cancer Survivors: A practical guide to your future. O'Rielly, Sebastopol, CA. USA.
Visit http://www.childhoodcancerguides.org for more information. |
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