The Brainy Bag is available to all children diagnosed with a brain tumour.
Each bag is slightly different as it includes items appropriate to the age of the child.
If your child has, or had, a brain tumour you may find that they experience learning difficulties to some degree. The difficulties can be due to a number of factors and it is estimated that more than half of children who are treated for a brain tumour experience a learning difficulty of some sort.
Learning difficulties experience by children with brain tumours vary, but commonly include:
As a result of these difficulties, your child's IQ score could be lower than expected at their stage in development. You may find this upsetting, but it is important to remember that IQ scores can be misleading, as the tests do not always reflect an individual's situations and how they perform in a test situation.
Your child may experience decreased self-esteem, frustration and emotional upset as a result of their learning difficulties and they could need support to cope with the emotional impacts of having learning difficulty before the difficulty itself can be addressed.
Generally speaking, the younger a child is when they are diagnosed and treated for a brain tumour, the more pronounced their learning difficulties will be. This is due to their brain being affected whilst still growing and developing.
Learning difficulties may cause direct impacts that result from the tumour itself, for example if the tumour is located in an area that plays a key role in learning, or they may cause indirect impacts on learning such as missing school.
The reasons underlying learning difficulties can be complex, but may arise from:
There are several sources of support to help your child with their social and educational development.
The National Cancer Institute estimates that over half of children treated for a brain tumour need additional educational support with their learning which can include:
After assessing your child's difficulties an educational psychologist can recommend one-to-one support in certain subjects, advise teachers on teaching styles and techniques that may help, or refer on to another health professional, such as a speech and language therapist. You can speak to your child's health team about the educational psychology services available in your area and how to access them.
This is a report that sets out your child's learning needs and the support they should receive. A statement of SEN is usually given by your local council if the support that your child's school is able to provide from their internal resources is not sufficient to fully support your child. The SEN statement is reviewed each year so that its recommendations can be adapted according to your child's changing needs. It is recommended that you let your council know as soon as possible if you wish to request a statement of SEN, as the process can take some time.
For older children taking their GCSEs or A-levels, it may be possible to get extra time and other help with their exams. It is best to apply for this at the beginning of the academic year or as soon as they are diagnosed. The SENCO (Special Educational Needs Co-ordinator) or Exams Officer at your child's school/college or exam centre will be able to help with this.
It can also be extremely beneficial to speak to your child about their experiences and anything they are struggling with or that concerns them to find the appropriate support for them. Don't be afraid to seek support from your child's health team who will be able to direct you to the appropriate support for specific issues. Most teachers are also very happy to provide any extra support for your child that they can.
Visit our education resources page for a range of downloadable materials to support you, your child and the school.
There are also a range of professionals who can provide emotional support which can include:
These nurses are specialists in working with children who have a brain tumour and act as a link between you and your child and the rest of your child's health team. They are often good people to answer any questions relating to your child's brain tumour and treatment.
Play therapists can support your child through stress and anxiety they may feel about certain treatments or procedures, such as having an MRI scan or being treated with radiotherapy. They do this through play, for example, using toys, puppets and books.
Clinical psychologists can work with your child to support them through anxieties they may have, and to increase their self-esteem.
There are various ways your child's learning difficulties may come to light. These may include your own observations as a parent or carer, as well as teacher observations and reports. It may take some time for a learning difficulty to be identified if it is subtle and it is possible that a learning difficulty may become more pronounced as your child grows and attempts more complex tasks. Your child may also be referred to an educational psychologist to assess any underlying difficulties.
You are entitled to request a statement of SEN and can do so through your child's school, which should have a SENCO. If your child is not in school, you can speak to your local council or your family GP about getting a statement of SEN.
Requesting a statement does not automatically mean that you will get one. However, if the council says that they will not provide one, they will explain in writing why not and how your child will be supported inside or outside of school.
Our Children and Families Service offers a range of support to children and families living with a brain tumour diagnosis.
You may also wish to join our friendly and supportive Facebook community where you can meet others who understand what you're going through.
Page last reviewed: 09/2013
Next review date: currently under review
Find out more about Learning difficulities in children in the full fact sheet.
Find out more about Learning difficulities in children in the full fact sheet - Clear print version, designed to RNIB guidelines.
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