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.
Children who have, or had, a brain tumour may develop learning difficulties at some time. The difficulties can be due to a number of factors, such as time out from school or the side-effects of the tumour and its treatment. They may need some extra help.
Unfortunately many children are likely to be affected to some extent. However:
Generally speaking, the younger your child is when they are diagnosed (and treated), the more likely they are to develop learning difficulties, particularly if they are under three years.
This is because their brain is still growing and developing, and so is more susceptible to being affected by treatments.
Sometimes learning difficulties may not develop, or may not become obvious, until a few months or even years later. This is called a 'delayed or late effect'.
Each child is different and much will depend on where their tumour is in the brain. This is because different parts of the brain control different parts of learning.
The age of your child and the size of their tumour may also affect their type of learning difficulty.
Common learning difficulties in people with brain tumours include issues with:
All these can be made worse by fatigue (extreme tiredness) - another common issue for people who have or had a brain tumour.
This is understandably frustrating for your child, and may cause anxiety and stress. Time away from their lessons and friends can affect them emotionally, and negatively impact their learning.
As a result, they may need support to cope with the emotional impacts of having a learning difficulty before the difficulty itself can be addressed.
It is important to remember that having learning difficulties does not mean that your child is now less intelligent, but rather that they have difficulty recalling or processing information.
There are various ways your child's learning difficulties may come to light. These may include your own observations as a parent or carer, or from teacher observations and reports.
Some treatment centres offer 'neuropsychological testing' before and after treatment to check for any early signs of learning difficulties. Speak to your child's health team about this.
It may take some time for a learning difficulty to be identified if it is subtle. It is also possible that a learning difficulty may become more pronounced as your child grows and attempts more complex tasks.
There are several sources of support to help your child with their social and educational development.
To help give parents and teachers (and, where appropriate, the young person themselves) the information, knowledge and confidence to work together to overcome these issues, The Brain Tumour Charity has created a set of practical, downloadable Education Resources.
Find them at thebraintumourcharity.org/education-resources
Your child's teacher and Special Educational Needs Co-ordinator (SENCO) should be involved as soon as your child is diagnosed. Their role is to make sure that any support your child may need is put in place before or when they need it.
Although there is a lot of support available for children with learning difficulties, sometimes it is difficult for teachers/tutors (as well as parents) to know what is available, what your child is entitled to and where to find it.
Sometimes lack of awareness of rarer health conditions, such as brain tumours, and their effects on learning ability adds to the problem.
Use The Brain Tumour Charity's Education resources (described above) with your child's teachers to reduce the negative impact that brain tumours may have on your child's educational life. They include effective support strategies and plans, as well as legal rights and responsibilities.
Educational psychologists help children or young people who are having problems (learning, social and emotional) that are getting ion the way of their learning.
After assessing your child's needs, 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. They can also help with EHCPs/SEN statements (see below).
Speak to your child's school about the educational psychology services available in your area and how to access them.
Much of the additional support your child may need can usually be provided through the normal learning and teaching that takes place in the class. However, occasionally extra support may be needed that your child's school is not able to provide from their internal resources. The extra support can be achieved via an EHCP, a CSP or a Statement of SEN (depending on which UK country you live in).
These are reports that set out your child's learning needs and the support they should receive. They are legally binding documents.
Either you, your child's teacher or someone in your child's health team can request an assessment for a plan from your local authority (LA), council or Education Authority (EA), if you feel this is something your child needs. This can be for physical/medical needs as well as cognitive/learning needs. Requesting an assessment for an EHCP, CSP or statement does not automatically mean that you will get one.
The plan/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 an assessment for a plan/statement 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, such as breaks during the exam or help from a scribe. It is best to apply for this early, but discuss the timing of application with the SENCO or Exams Officer at your child's school/college or exam centre, so that the application doesn't run out of date.
It can help if you and your child talk about how they are getting on and anything they are struggling with or that concerns them. This can help relieve stress and anxiety for your child. It also gives you the chance to find out any difficulties your child is having that you are unaware of, which can help you find appropriate support for them.
Don't be afraid to seek support from your child's health team – they will be able to direct you to appropriate support for specific issues. Most teachers are also very happy to provide any extra support for your child that they can.
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.
Community paediatricians are children's doctors who specialise in childhood development and learning issues, as well as physical and social issues. They regularly work with schools, school nurses and the Education Authority to help children who are struggling at 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.
While The Brain Tumour Charity cannot recommend any specific organisations or resources, you may find the following helpful:
(Though some are written by charities not related to brain tumours, they still include useful information.)
Page last reviewed: 02/2018
Next review date: 02/2021
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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