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Returning to school
Following discharge from hospital, you will be keen for your child to return to school and for family life to return to normal. However an outwardly good physical appearance can mislead you into believing that your child has completely recovered. On return to school, the full impact of any difficulties will become apparent.
You should aim for a gradual return to education, rather than an immediate one. Tiredness may be a difficulty and fatigue can be the cause of behavioural problems. Begin with mornings only and allow your child to rest during the afternoon. You might want to leave it like this for a few weeks, even months. Start full days at the end of the week, so your child has the weekend in which to recover.
It is important that teachers and other staff working with your child are fully aware of the implications of encephalitis. Request a meeting with the head and class teacher to explain that your child’s return to school will need a structured approach. Ask for a regular meeting to assess your child’s progress and plan the next stage. Don’t overwhelm the school with information material. At the first meeting provide them only with information about the illness, keep more specific material for teachers until the next meeting. Everyone who is involved with your child should have access to the information you provide, so you may need more than one copy. At primary school your child often deals mainly with one teacher and liaising with this teacher can be relatively straightforward; whereas at secondary school the number of teachers dealing with your child greatly increases and it becomes much more difficult to ensure that all teachers are aware of the cause of possible problems. In this case, it is probably useful to enlist the help of the SENCO and/or the class teacher.
Dealing with problems at school
It may be difficult for school staff to appreciate the unique nature of any problems your child is experiencing. Your child may look the same as before and can often in some respects perform as well as before. There might be diminished academic ability and changes in behaviour. Your child may tire easily; have problems concentrating especially in a noisy classroom. Their memory may be poor and their behaviour inappropriate and challenging. They may have difficulty in working at speed, which results in falling behind in class. Verbal processing can also be reduced, making it difficult for your child to follow instructions. Your child may also have problems changing task, refocusing on a new issue. The speed at which a class works, in primary but more especially in secondary education, is often felt to be a major problem for children with acquired brain injury. These difficulties can lead to feelings of isolation, as other children don’t understand the cause of your child’s changed ability and behaviour.
Sometimes allowances are made at the beginning and minor problems are overlooked. But expectations then often increase. Teachers may start to think, “You’ve been back six months. I can’t keep taking excuses about you not handing your work in”, or “I shouldn’t have to keep repeating the information, you need to listen”, or “You must try harder”. Problems may also begin to surface some time after the illness, depending on where the damage occurred in the brain. It is often hard to persuade teachers and other helpers that problems may relate to something that happened some time in the past. See 
The Effects of Encephalitis/Age at Diagnosis
Strategies that might help your child:
- Allowing extra time for your child to complete tasks.
- Auxiliary help for supporting your child in the classroom by helping them with note taking, home work details, organising work, ensuring in secondary schools that they arrive at the next class room in time, etc.
- Adaptation of the curriculum, focusing on fewer subjects.
- Frequent rest periods
- IEP (Individual Education Plan). These are written plans, detailing achievable educational targets for your child. They help all involved in your child’s education, teachers, psychologists, auxiliaries, as well as you and your child, focus on priorities.. If your child has a Statement of special educational needs (SEN) then they will have an IEP which will be reviewed annually. However, even if your child does not have a Statement, they may be a useful tool to ensure that your child is receiving the right kind of help and support.
See Resources/Publications/Children/Teachers for resource materials for teachers and training packages.
Special Education Needs
When it becomes apparent that problems are not resolving themselves, it is entirely appropriate for a formal assessment to be considered. A formal assessment is carried out to see if your child has special educational needs (SEN) and if so what needs to be put in place to meet these needs. You can ask the head teacher of the school your child attends to initiate the assessment.
If the Local Education Authority (LEA) decides to undertake a statutory assessment of your child’s special educational needs, and you agree to this, you will be asked to submit written information towards this assessment. LEAs must offer you advice regarding your contribution. They usually offer written suggestions regarding what should be included and sometimes offer assistance from a Parent Partnership Officer or the person at the LEA who has responsibility for overseeing the assessment process. (This person is called the Named Officer, and you will always be told who this person is and how to contact him or her).
There are many organisations that give detailed information and support for following through this procedure (see Section 6). They should also be able to advise you on current practices any regional differences in provision and procedure where they occur. A separate fact sheet available from the Encephalitis Society “Statutory Assessment – Parental Advice” gives more information about completing this part of the SEN process.
Choosing a school
Finding the right school for your child who now has different needs from before they were ill can be a daunting task. Most parents will have no experience of special education and may find choosing a school an alarming prospect. Free copies of an excellent publication 'Choosing a school for your child with acquired brain injury' are available from the Brain and Spine Foundation www.brainandspine.org.uk
Mainstream schools
Where possible your child will be placed at a local mainstream school where their special educational needs can be met. The principle of 'inclusive education' (UN declaration on Human rights, 1948 and UN Convention on the Rights of the Child, 1989) mean that wherever possible children should learn together and ordinary schools should recognise and respond to children? s different needs.
The Special Education Needs (SEN) Code of Practice states that each mainstream school must name a member of the teaching staff as the Special Educational Needs Co-ordinator (SENCO). The job of the co-ordinator is one of the most important in a mainstream school, especially a school where there is a large number of children with SEN. SENCO's are expected to play a pivotal role in coordinating work with a range of different agencies and parents. Further information can be found at www.parentscentre.gov.uk/
You may like to consider a Waldorf (also called Steiner) school. These are mainstream schools, broadly following the national curriculum, based on the philosophy of Rudolph Steiner on child development. In practical terms the children in these schools continue to have designated class teachers into secondary education, greatly simplifying the communications with the school about your child? s difficulties. The children are taught mainly in their own class room, preventing disorientation for children who struggle with finding their way around. The curriculum tends to get taught in blocks of several weeks, making it easier for the child to focus on one particular subject for a time and catching up on missed lessons if needed. Moreover, the approach to child development is broader with greater emphasis on art and personal expression. Although the Waldorf schools are as yet not recognised special needs schools, in some cases the local education authority can be persuaded that these schools provide a special environment suitable to the needs of a particular child. www.steinerwaldorf.org.uk
Mainstream schools with special units attached
Some mainstream schools have special units with facilities for specific needs (e.g. speech and language units). At these schools your child may be taught all the time in the class room, or spend some time in the special unit where he or she receives input from a specialist or a learning support teacher, either on a one-to-one basis or in a small group.
Special schools
In most areas there are special nursery, primary and secondary schools, some run by the local authorities, some independent or grant aided. They cater for particular needs in children (sensory, behavioural, learning, etc). Some are residential, where your child would board on a weekly or term basis. Most local authorities will try to place your child in schools near your home, leaving your child in their familiar surroundings with family and friends. If the needs of your child are complex or high level, skilled care is required or a place at a residential school may be more appropriate. Details of 'Schools for Special Needs: A Complete Guide' are available in Resources/Service Providers/Education.
General Advice
In general you have to be prepared to be pro-active in the search for a suitable school for your child. You know your child best and are the best judge on how a school can meet your child's needs. As a parent you have the right to request a placement at a school you feel is most suitable even if this school is out of your local area.
Some Special Schools are run by local authorities, others are independent and will charge school fees to the local authority. Wherever possible all effort will be made to place your child in a local school suitable to their needs. If the needs of your child cannot be met locally, a residential placement at a school further away may be sought.
Before deciding on a school for your child it is important that you and your child visit the school and speak to the head teacher and/ or special needs teacher about the difficulties and challenges your child is experiencing. Schools that have dealt before with the after effects of acquired brain injury (including epilepsy, memory problems, behavioural challenges, etc) are more likely to be aware and understanding of the difficulties your child is experiencing. Some schools will encourage the child to visit for one or more days before both parties make a decision about the suitability of the school.
A number of publications to help you find an appropriate school for your child are listed in Resources/Service Providers/Education, as well as a number of contacts/ websites that might be useful in coming to a decision.
Consider the following points:
- Be clear about the needs of your child, list them and score schools against needs.
- Look at different schools, ask for prospectus, and visit. A look around a college or school or residential place, and a chat with staff and other students gives you a far clearer picture whether a place is suitable than a prospectus.
- Be aware of pitfalls (such as transport might not be provided to and from school by the local authority, where the school choice is the result of a placing request).
- Read HM inspectors report on schools www.ofsted.gov.uk and www.scotland.gov.uk (key in school inspection). Each school has its strong and weak points and some might be more suitable for your child? s needs.
- Keep all information, correspondence, etc in a file so you don? t lose it. It can be useful to keep a notebook recording every interaction you have regarding your child's education. Make sure you note down the date and who you spoke to.
- If anything is agreed over the 'phone ask them to put it in writing.
Taking Public examinations
You can request a letter from your child's GP, Psychologist or Paediatrician to send to the Examination Boards. They are sympathetic and will allow the following:
- Extra time - 25% - during the examinations
- Rest breaks - as many as are required in any exam
- Allow an exam to be deferred by one day if it means the child has 2 exams in one day as long as the child is kept away from other children and supervised not to use the phone, mobile, computer ie so long as the child has no contact with other children
- Separate invigilation
- A scribe if writing is a problem
Home or hospital based education
There are various reasons why your child might not be able to attend school.
- Through ill health or a long stay in hospital. In the case of a prolonged hospital stay you might be offered education through the hospital education service. It is important though to remember that too high a demand on a brain injured by encephalitis might have adverse effects on the rate of recovery. If your child is unable to attend school through ill health, home tuition might be offered. A teacher will visit your child at home to provide approximately 5 hours/week tuition.
- Exclusion from school. After encephalitis your child may present with behavioural challenges and the school might decide to exclude your child. Where this exclusion is temporary home tuition can be provided. More information on how to deal with exclusions can be gained from 'Contact a Family' (see end of section under useful people, etc).
- Parental choice to educate at home. You might decide that the interests of your child are best served by home education. The obvious disadvantage of this type of education is the lack of social interaction for your child, and some thought should be given to the importance of this to their general development. However, school is not the only provider of social contacts with other children. The advantages of home education for your child are that it? s flexible and personal. There is no problem with falling behind if your child is tired, or unwell, or suffering seizures. Rests and change of activity can be tailored around your child? s immediate needs. This may also be worth considering until you feel your child is ready to return to full-time education. There are some organisations that can help you, should you want to consider home education. www.education-otherwise.org (England), www.schoolhouse.org.uk (Scotland)). You have to be prepared to be inspected by the educational authority. 'Flexi-schooling' or 'flexible school attendance' is an arrangement between the parent and the school where the child is registered at school in the normal way but where the child attends the school only part time; the rest of the time the child is home-educated (effectively on authorised absence from school). 'Flexi-schooling' is a legal option provided that the head teacher at the school concerned agrees to the arrangement. Some of the advantages and disadvantages of 'flexi-schooling' are referred to on the Home Education UK's website at www.home-education.org.uk
Going to meetings
Meetings dealing with your child's needs and future with professionals can be daunting and stressful. See - Section 3 Meeting with the Professionals - How to Prepare. The following pointers might be helpful to get the most out of education meetings.
- Familiarise yourself with your child? s rights under any new legislation and try to find out what the approach is in your area (eg if LEAs are reducing the number of Statements issued and putting additional resources directly into schools for the handling of SEN)
- Write down questions, worries and thoughts before the meeting and make sure you get to discuss every point before the end of the meeting. Make a note of the answers at the meeting to help you remember later on.
- Make sure you are clear beforehand what outcome you want from the meeting.
- Take an advocate for yourself, an independent person to support you (this can be a member of your family, a friend, or a person with experience in dealing with these sort of meetings (such as somebody from the Parent Partnership Service). You have a right to do this, it will help prevent you feeling isolated amongst all the professionals during the meeting and is somebody to exchange thoughts with after the meeting
- Take copies of assessments, medical, educational, psychological etc. to the meeting, so you can refer to them at the meeting. - Take a list of what you think are the main problems
- And . . . when asked, take care not to say things are fine!
Transition
Understandably, many parents are concerned about their child's future after leaving full-time education. Children in the UK stay in full time education under the care of the LEA until they are 16 years old. After they turn 16 there are 3 options for what to do next:
- stay in education
- seek employment
- gain experience
If you live in England you can involve the Connexions Service which offers guidance to young people in the transition to adult life. If you live in Wales, it is Careers Wales which needs to be involved. Links to organisations in Scotland can be found at www.scotland.gov.uk/
Young People with Special needs
During the year in which your child becomes 14, thought needs to be given on how to help your child prepare for the future. In England a 'transition plan' will be prepared, in Scotland this is called 'future needs assessment'. This is a meeting between you, your child/ young person, someone from the school, and other responsible parties (e.g. social worker, careers adviser, doctor, educational psychologist, etc). The meeting should discuss options for your young person? s further education, vocational or work training, and employment. It should also include discussions about independent living and leisure activities.
A really useful guide that you might want to try and get hold of is 'After 16' What's new' . Unfortunately it is now only available via the website www.after16.org.uk but it discusses the choices and challenges for young disabled people, and is well worth a look! Contact a Family produce 2 booklets 'Transition in England and Wales' and 'Post 16 Transition in Scotland' which identify the main areas that parents & young people need to think about.
Further Education
Your young person will need to have a clear understanding of what educational opportunities exist after leaving school. The choice of establishment will clearly depend on the type of course your young person wants to take and where the course is being run.
There many colleges of further education that are able to accept students with special needs on their mainstream courses. There are also special courses which aim to ease the transition from school to further education or employment. Some courses focus on helping young people towards independent living, including training on home management, personal relationships and use of leisure time.
These are the options for young people who want to continue their education after school:
Further Education Colleges
They can be classroom based or practical. They often have flexible learning methods, full, part time, evening and summer courses. Most colleges have learning support departments, able to discuss any particular support that is needed.
Specialist colleges
These, usually residential, colleges can offer more support for students with additional needs. They tend to specialise in certain disabilities and courses. Most of them are in England and Wales but they welcome students from Scotland and Northern Ireland. Comprehensive lists of these colleges can be found in the Association of National Specialist Colleges (NATSPEC) website www.natspec.org.uk
Universities
Most universities are better geared up towards helping students with special needs these days, in particular with organising support and offering help with extra finance where appropriate. When considering a course at a university a number of issues, apart from the academic demands of the course, need to be considered and discussed with the University? s Disability Coordinator.
- If your young person is living away from home, are there residential halls?
- Is transport support needed?
- Is the lay-out of campus and lecture buildings, etc likely to present problems?
- Is your young person's personal organisation good enough to independently take responsibility of own studies?
- What is the University's/ Faculty's/ Department's view if the volume of study presents a problem and more time is needed to work through it?
- What support is needed for your young person to participation in social activities, etc?
Open learning.
This is a flexible method of studying at your own pace. All or part of the studying will take place in your own home. Before considering this option your young person needs to make sure there is space and time at home to study, lack of social scene is not a problem and motivation and organisation are sufficient to deal with this independent form of study. www.open.ac.uk
Finance of further education courses
SKILL (National Bureau for Students With Disabilities) website www.skill.org.uk deals extensively with this; your young person's social worker/ care manager or career advisor can also help, as well as making sure all possible benefits are applied for. You can also contact your local Benefits Enquiry line or Jobcentre.
Employment
The first step when considering employment after school will be to speak to the school career adviser or somebody from the local career office or jobcentre plus www.jobcentreplus.gov.uk who is skilled in dealing with people with additional support needs. They can help with pinpointing strengths and weaknesses, and likes and dislikes. There are also websites that can help your young person, PlanIT Career Pointer www.planitplus.net. The extent and nature of the support needs may impact on the choice and opportunities in employment. Your Disability Employment Adviser based at the Job Centre can help by, for example applying for a 'job introduction scheme'. Other programmes that may be helpful are Skillseekers, Modern Apprenticeships, and New Deal for Disabled People. Self employment and supported employment are also options to consider. Advice can be gained from your local Disability Employment Advisor (Jobcentre Plus).
Gaining experience
Taking time out for a year or so can be a good opportunity to do some volunteering, take part in day service activities or travel. It may be possible to combine these options with training, employment or education. There are numerous organisations that offer volunteering opportunities. Support needs will have to be considered and discussed with your placement organiser, along with other considerations such as what experience would be gained, how much time is available, etc. The Disability Discrimination Act does not at the moment cover volunteering, but many of the principles still apply and it's best to discuss support needs with the placement organiser.
Day Services
Activities designed specifically for people with all sorts of disabilities, to help them gain life skills and increased independence are provided by local Day Services. To find out what is available in your local area, contact your local Social Services.
Last modified 21/11/06
