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The Emotional Impact
Encephalitis in the family can be an isolating experience. Your child has at one moment been a normal, healthy developing individual and then suddenly is struck by a serious and often life threatening illness, that you have never heard of. The illness, because of its rarity, can be a bewildering experience for all family members. There may be delay and uncertainty with the diagnosis. Many tests are “normal” and yet your child is desperately ill. Treatments, particularly of seizures, may be initially ineffective. You become concerned for the child’s survival, whilst brothers and sisters see a sudden and prolonged focusing of attention on the sick child.
Emotions may come and go suddenly and unpredictably. The initial reaction to your child’s diagnosis can be shock, disbelief then denial. It may be confusing, chaotic and difficult at times to work out exactly what you are feeling.
Grieving for a 'lost' child
After encephalitis your child may be different from the child they were before the illness. On the one hand, you will be feeling glad that your child has survived but on the other hand be grieving for a "lost" child. Thus there can be an enduring sense of loss despite your child still being alive. It can be a real struggle to adjust to these losses and changed expectations and you may re-visit these feelings at key stages in your child’s life, as you realise that they will no longer fulfill the expectations you had.
Finding a way forward
There are some positive things you can do. Acknowledge what has happened, accept things as they are now, and look forward. Be ready to modify your hopes and expectations. Gradually you will adjust to the changes and realise that although everything won’t return to the way it was, things can get better. Your child may not return to how they were before their illness but they can be happy and achieve in other ways.
A book 
Emma's Story - a journey through encephalitis, written and illustrated by parents of a child infected by encephalitis is highly recommended.
Local Parent support groups
People with children who have similar needs can be a great source of support and information. There may be a group for families with a child with a disability in your area. CBIT - the Children’s Brain Injury Trust have a number of regional groups that provide support and information. There may be a Family Centre in your area which offers support to families living nearby. They aim to help families who are having difficulties, through individual, family and group work and are often very useful in dealing with the stresses and strains which having a child with special needs brings.
Link Up
The Encephalitis Society has a Linking Scheme matching families in similar situations. “Link up” enables you to share experiences and learn from the experience of others. It may well help to relieve the feelings of isolation that are felt by many families affected by encephalitis. 'Link up' is available to members of the Encephalitis Society.
Encephalitis Support Meetings
The Encephalitis Society holds about 5 regional meetings each year and a Family weekend every other year. These meetings give families an opportunity to make contact with other families in similar circumstances. Friendship and support is a common outcome.
Counselling
Being supported emotionally is very important to all of us. Having someone who shares our concerns makes it easier to cope. For some parents having a supportive family will be enough. Others may need more professional help.
There are various kinds of counselling services available to enable you to speak openly about how having a child with special needs is affecting you. Their help may be short or longer term and it may be free or involve payment. Counselling isn’t offered routinely and you will have to ask for it. Often the first person to ask is your GP or someone involved in your child’s welfare. The British Association for Counselling and Psychotherapy www.bacp.co.uk provides a list of local member counsellors.
Cerebra offer a free telephone counselling service for the parents and carers of children with brain injury and other neurological conditions. For further information telephone Cerebra on free phone number 0800 32 81 159.
Some parents develop a severe emotional response and depression may begin to dominate their lives. If you or one of your family is struggling with these emotions, consult your GP about appropriate treatment.
Managing Stress
Stress can be brought about by the day to day pressures of bringing up any child. For you there may be additional pressures – such as coming to terms with a child who has changed and the constant battle for services. Experiencing stress for short bursts is a healthy way to respond to difficult situations but excessive or prolonged stress can cause illness. You might experience physical symptoms - headaches, nausea, indigestion, palpitations, and/or perspire more. Prolonged stress might lead to feelings of anxiety, fear, anger, frustration, and depression. You may find your behaviour changes too - perhaps you are more irritable or tearful, affecting how you interact with others (including your partner and your child’s siblings), and it may interfere with your sleep patterns or sex life.
A number of organisations produce a range of helpful information on coping with stress, feelings of anxiety and depression. They include
- The Child Development Institute www.childdevelopmentinfo.com
- Mental Health Foundation www.mentalhealth.org.uk
- Mind www.mind.org.uk .
Having fun
Try and do at least one thing a week that is just for you – coffee with a friend, gardening, a manicure, a movie, a walk in the park – and pamper yourself occasionally! Leisure interests are also important in balancing things out. It could be a sport, salsa dancing, a night class or just a night out with friends. If your children see you having fun and getting satisfaction out of life, they will tend to see this as a good model to follow, a good way to be.
Getting Practical Help
Many parents only ask for help when they are desperate and feel they can’t cope anymore. Social workers by law have to put families where children are ‘at risk’ to the top of their list so unless you make it clear just how difficult things are, it’s possible you may find your request for help falling to the bottom of the pile with a long wait ahead of you. If you need help now, say so, or try to ask for help before you reach crisis point.
To get help from a social worker you can:
- Contact the Duty Assessment Team which takes all new referrals about children and families in need. They have a duty to make an assessment within 7 days and if necessary a more detailed core assessment within 35 days.
- Contact the social work team at the Children’s Disability Service directly.
Tips for working with Social Workers:
- Don’t take ‘no’ as their final answer.
- Find out what other parents have got and how they managed it.
- Get your GP, consultant, health visitor on your side – get them to write letters for you explaining what you need and how much you need it.
There are regulations that require social services to make formal plans for supporting children. This includes producing a care plan which is agreed with parents and systems for monitoring your child’s welfare. In reality, social services struggle to achieve these requirements and in practice, you need to keep an eye on what is happening yourself. Contact a Family’s booklet 'When your child has additional needs' has further details. Contact a Family also produce a regular newsletter 'Share an Idea' with up to date information on a number of issues.
Respite Care
We all need a break and that’s nothing to feel guilty about. Don’t be afraid to be honest with those you can trust about the support you need. ‘Respite’ is all about giving you and the rest of the household that break – allowing someone you trust to look after your child while you go out or spend time with other family members. While you can arrange care with family members or friends or pay for it privately, most formal short breaks are co-ordinated by social services. It’s always worth checking what kind of short-term care is available in your area should the need arise. A word of warning however, there is always a heavy demand, you will have to jump hurdles and you will probably have to wait.
Breaks can include care in the home, day care away from the home, residential breaks, family link schemes and holidays. Your local social services department can tell you about the range of short breaks available, eligibility and how to apply. Crossroads is a charity that provides respite in your own home. After an initial meeting and assessment, care workers can for example, come and spend time with your child for a couple of hours a week or month, or help out during holidays when perhaps you want to spend some time with your other children.
Sometimes it’s not easy to admit you need a break. You struggle so hard to keep going the thought of having to make any extra arrangements for your child’s care seems hardly worth the effort. But once you’ve got over the hard work, you will find good respite care a lifesaver, and well worth the effort spent on getting it right.
Having short breaks can help you discover that it is possible to let your child go and allow them to discover that they can enjoy life away from the family. It can help them learn to adapt to new situations and experiences much better than they might have done otherwise.
Childcare
In England, Wales and Scotland help with finding suitable childcare can be obtained from the local Children's Information Service. In Northern Ireland families can call Employers for Childcare, Tel: 0800 028 3008 (Mon-Fri, 10am-1pm). Across the UK it may be possible to use direct payments to arrange childcare. Through the Direct Payments scheme, local authorities can give cash payments rather than a service. For example, this can enable working parents to employ someone to look after a child after school. In exceptional circumstances direct payments can be used to pay a close relative and may be a way of receiving and acknowledging help given by someone who has a close relationship with you and your child. Scope produce a pack 'Direct Payments for your child'
Residential care
When local schools and support services do not meet your child’s needs, it can be daunting trying to judge whether a residential special school would be better. It is a conclusion you will come to very reluctantly and you will worry about how to find a school that would best meet your child’s needs. You will struggle with guilt and fear about ‘sending your child away’, although, you know that you are trying to do what is best for your child. A booklet 'The right place - A parent’s guide to choosing a residential special school' offers advice and information about choosing a residential special school. This booklet lists the kinds of questions you will want answered and gives advice about how to seek the information you will need. It also includes a list of other useful publications and organisations. You can download a copy from the Joseph Rowntree Foundation website
House adaptations
For children with physical difficulties, it may be necessary to consider either moving house or adapting your family home. It’s advisable to plan well ahead because negotiations about what adaptations are possible and who will pay for them may take a long time.
To get advice about adaptations the first thing to do is contact your local social services or social work department. Getting help generally requires the recommendation of an occupational therapist (OT) who will visit your home to discuss your needs and advise about what is possible.
The Family Fund Trust has information sheets about adaptations to housing in England and Wales, Northern Ireland and Scotland. Radar can advise in the event of any difficulty in obtaining a Disabled Facilities Grant. Muscular Dystrophy Campaign can also help families whose children have impairments other than muscular dystrophy. They have published an Adaptations manual that can help families through the maze of adaptations.
Equipment and sundries
If your child has severe physical difficulties, which make it hard to manage everyday things such as meal times, using the toilet or getting around, you may be able to get special equipment or adaptations in your home to make life easier. Caring for a physically disabled child gets increasingly demanding in terms of lifting and it is vital to get proper advice from your child’s physiotherapist or occupational therapist about the safest way of lifting. Contact a Family produce a factsheet 'Aids, equipment and adaptations' www.cafamily.org.uk/aids.html
If your child needs special IT equipment AbilityNet provides free information, advice and individual assessment of IT needs. They can supply assistive technology with free support. www.abilitynet.org.uk
Benefits and other sources of financial help
There is financial help for you and your child and this can help with even the smallest of things like extra laundry costs, special diets, and the cost of attending endless appointments and extra tuition for your child.
Disability Living Allowance
This is a tax-free benefit for adults and children with a severe disability who need help with:
- Getting around, or
- With personal care, or
- With both of these
There is no requirement for a medical examination and the family’s income and savings are not taken into account.
Don’t be put off by the term severe disability as there are different rates awarded for different levels of disability. It is always worth applying as you may not realise just how much resourcefulness, time and energy you put into helping your child learn all sorts of skills that other children pick up effortlessly. You child may need help with everyday care like washing, dressing, using the toilet etc. They may need constant supervision to keep them out of danger. Whatever their care needs it is worth making a claim.
You can obtain a claim form by phoning the Disability Living Allowance Helpline 0845 7123456. They will date stamp it and providing you return it within six weeks, your claim will be considered from that date. If you obtain a form from other sources it may not be date stamped.
The claim form can be daunting, but don’t be put off. Cerebra have produced a 65 page, step-by-step guide to claiming Disability Living Allowance (DLA) for children under 16 years of age who have a brain related condition. The guide takes readers through the claim pack, box-by-box, and contains lots of useful hints and tips on: preparing for a medical visit; obtaining supporting evidence; keeping a DLA diary and much more. Help is also available through the Benefit Enquiry Line on 0800 88 22 00 and most Citizen’s Advice Bureaus have a Welfare Benefits Advisor.
Carer’s Allowance
If your child receives DLA at the middle or highest rate you may also be eligible for Carer’s Allowance. It is a weekly cash payment for anyone who spends at least 35 hours a week looking after someone with an illness or disability. There is a limit on the amount that you can earn and still get Carer’s Allowance and this may change every year. For more information you can contact the Carer’s Allowance Unit on 01253 856 123.
Other Benefits
There are some benefits that you may be able to claim if you are unemployed or in receipt of a low income. These are:
- Jobseekers Allowance – contact your local Social Security or Jobcentre Plus office
- Income Support - contact your local Social Security or Jobcentre Plus office
- Housing Benefit, Council Tax Benefit - contact your local Social Security, Jobcentre Plus office or Local Authority
- Tax Credits – Contact the Inland Revenue Helpline on 0845 3003 900
It is important to know that you may be entitled for Home Responsibilities protection that will help to protect your basic State Pension. More information on this is included in leaflet CF411 available from your local Social Security or Jobcentre Plus office.
Direct Payments
You may choose to have direct payments to buy services that meet your child’s assessed needs instead of receiving services provided by your local council. These are non-taxable and payable to carer’s aged 16 and over. Through the Direct Payments scheme, local authorities can give cash payments rather than a service. For example, this can enable working parents to employ someone to look after a child after school. In exceptional circumstances direct payments can be used to pay a close relative and may be a way of receiving and acknowledging help given by someone who has a close relationship with you and your child. Scope produce a pack “Direct Payments for your child”
Family Fund Trust
The fund is for families on low incomes who have children under 16 with severe disabilities. Although the Fund will consider most requests, they give priority to people whose social and financial needs are the greatest. The first time you apply, a family support worker will arrange to meet you and your child at home to get a better picture of your needs. Family Fund Trust
Other sources of help
There is help available for a surprising number of different things, such as help with hospital fares, disabled person’s railcard, and disabled facilities grants. It is important that you find out exactly what you are entitled to, so you don’t miss out.
The Disability Alliance runs a Rights Advice Line on 020 7247 8763 and a “Don’t miss out” publication which is a clear and easy to use guide to benefits and services, including case studies and calculations.
Family Dynamics
The wide-ranging impact of encephalitis has a knock-on effect on other family members. Siblings, parents and grandparents are also affected by the stressful nature of the problems following encephalitis.
Relationships within the family may change; you may have adopted multiple new roles following your child’s illness. You may have found yourself becoming an advocate for your child, a caregiver, a coordinator of services and an educator of others. This burden of care severely restricts the time you have for yourself and the time you have for other family members.
Parent relationships
You may find that your child’s difficulties are putting an enormous strain on your relationship with your partner. Your relationship may become stronger, but some couples may drift apart.
Some things that may put strain on your relationships are:
- a sense that one or other of you is to blame
- differences of opinion about how to handle specific issues
- differing views on how family life should change in response to your child.
There will be external factors too such as:
- a lack of time for all the jobs that need to be done
- tiredness
- worries about money
- anxiety over the future
- feelings of guilt or frustration
- •ust not getting any time alone together
Your relationship as a couple sets the emotional environment for your whole family and keeping it strong and healthy will benefit the whole family. Couples, able to talk to –and cry with- each other in safe, confidential surroundings, make it easier to cope. Further suggested reading “Looking after yourself and your relationships” in the booklet “Parents Guide” produced by the Brain Foundation of Australia, the text can be downloaded www.brainlink.org.au
Single Parents
One of the greatest advantages that parents with partners have is that they have someone with whom they are happy to leave their child, enabling them to have a break. For single parents, the practical burdens can seem overwhelming, and there’s usually less opportunity for emotional support. Unless other family members or friends live nearby, finding a childminder can be very difficult and evenings out or other breaks from caring hard to arrange. Assistance from Carer’s Resource Centres Carers UK can be vital - and don’t feel guilty about asking for and accepting help.
The needs of siblings
Depending on the age of the brother or sister they may be aware of how seriously ill their sibling has been. They may be afraid that they too will become ill or that they are in some way to blame for their siblings illness. You will need to address their concerns and answer their questions as simply as possible.
There’s a real danger that your child’s brothers and sisters may lose out because of all the extra attention your child affected by encephalitis needs. Your other children may have very mixed feelings, alternating between love and protectiveness and jealousy, resentment and irritation. For your other children playing with a brother or sister affected by a brain injury can be frustrating, they may not remember rules of games, their behaviour may be disinhibited and “silly” or they may soon lose interest or become tired. Adolescents may be embarrassed about their sibling’s behaviour.
You may be worried about how to meet the needs of your other children. Your concerns may be:
- Giving your other children enough time and attention
- Getting them to share their feelings
- Dealing with sibling rivalry
- Concern that your children are missing out
In some areas there are groups for brothers and sisters (sibling groups) that provide emotional support and social activities/. Ask you local social services. Contact a Family produce an excellent factsheet “Siblings” which can be downloaded from their web site www.cafamily.org.uk/
Grandparents and the wider family
Whether help and support is available to you from your own family depends on many things such as whether or not they live close by, whether they feel confident about taking responsibility for your child, their own family situation, their own health. For some families grandparents can be a great help, especially in practical ways such as helping with child minding or household chores. Emotional support may be more likely to come from your brothers and sisters if you have them, and indeed the support is often mutual.
Accepting help from grandparents or other members of the family can, however, cause more difficulties. It can be very frustrating if other people make allowances for your child in a way that conflicts with the way you care for them.
Inevitably not all families have good relationships and sometimes the sudden impact of encephalitis adds to already strained relations. It has been reported that grandparents go through the same anger, grief and denial emotions that affect parents, but some find it hard to move on to acceptance of the situation. Equally some grandparents may be overwhelming in their offer of support and advice, not knowing when to back off. Contact a Family produce a factsheet www.cafamily.org.uk
Leisure
You may feel that getting out and about is hardly worth the effort. ‘How will I get there?’, ‘Will my child embarrass anyone?’, ‘Will they be accepted?, ‘What will access be like?’ etc. However, finding social activities and things that you can enjoy together can go some way towards restoring normality.
Social opportunities
All children and young people want to have a social life and take part in activities they enjoy, but there can be barriers if your child has behaviour problems or special needs. You want to know that your child will be welcome, safe and supported, especially if your child needs constant supervision. You may be fortunate to have local play schemes and clubs with trained, experienced support staff, usually these are provided by local voluntary organisations. Contact your local Social Services for details.
When you are considering new activities you may have lots of questions. What will happen if my child is upset or has a tantrum? Is there a safe place to let off steam? What are the rules? Are they simple, fair and make sense to the children? What’s in place to help a child deal with disappointment? Will my child be encouraged to do as much as they can for themselves but not be left to struggle with things they can’t manage, or allowed to take unreasonable risks? It you ask all your questions at the same time, it may feel like your child is too hard to include. So sometimes it’s useful to sit and see how a session runs before introducing your child.
Consider these possibilities for your child
- Youth groups or clubs - some areas may have clubs especially for children with special needs – such as Gateway run by Mencap. Others may have a policy of integrating children with special needs into mainstream clubs. A number of churches also run youth groups.
- Community leisure centres / activity programmes will offer a range of group activities including swimming. Your local Council will have details.
- Holiday programmes: Contact your local council or YMCA – local programmes should include children with special needs.
- Scouts and Guides (including Cubs and Brownies): These organisations have a strong reputation for providing opportunities for all young people. www.scouts.org.uk and www.girlguiding.org.uk
- Outward Bound runs courses for children with the main objectives being to have fun, foster skills development and increase a child’s potential. http://www.outwardbound-uk.org
- Orienteering is a great sport to take up with friends and family. www.britishorienteering.org.uk
- Horse riding: Contact Riding for the Disabled, on 03 9527 7285.
Look around at what other children are doing in your local community, or your child’s school. If you experience difficulties with a particular organisation, it may help to have someone talk with the organisation (eg a youth group, camp etc) to help them understand and cater for your child’s needs. If necessary, consider recourse within the Disability Discrimination Act.
Contact a Family produce a factsheet: “Holidays, play and leisure” www.cafamily.org.uk/ The aim of the factsheet is to provide some information about what exists and to suggest ways of accessing play and leisure.
Holidays
Holidays can provide a welcome break from the routine of caring on a daily basis but you will need to plan ahead to make your holiday successful. There are many organisations which provide holidays and holiday accommodation for families and children with special needs: these are listed on the Contact a Family fact sheet “Holidays, play and leisure” –see above. Families with disabled children may be entitled to help from the local Social Services Department. Some authorities may provide grants towards holiday costs, others may offer holidays at places of their own choice. Some local authorities insist on means-testing and, even when grants are available, they are usually small.
Holiday Centres, such as Centre Parcs, are an option to be considered. They are child friendly and offer a range of activities to suit all ages and abilities. Many are enclosed and traffic free, providing a secure and safe environment for your child.
Books and games for children
Stories help can help your child to cope with a lot of the feelings and problems that they experience in their day. Story time can be a special caring time with you that your children will cherish. Whether they are the stories you tell, or stories in books, stories are one of the ways that children learn to enjoy reading. Books, and the people they read about in books, can become their friends. Children can also learn that books are a way to find out lots of useful and important things. Many people look back fondly on their favourite stories from childhood. A list of suggested books is in Section 6.
Games are also an important part of a child’s development, they are generally inexpensive, readily accessible and provide motivating and rewarding opportunities to enhance cognitive skills, such as attention, memory, sequencing and perception. Often games can be adapted to your child's current cognitive level and can provide an opportunity for your child to develop or reinforce appropriate social skills, such as waiting their turn and following a specific set of rules.
Some tips on playing games with your child
- Encourage your child to choose a game. A game that is chosen by your child is more likely to interest them.
- Discuss who will be playing and in what order.
- Follow the sequence of rules and turns as closely as possible, without frustrating your child.
Skills that games can help develop
- Attention — most games require each participant to remain attentive. Some games, such as Uno and Slapjack, make attention their primary focus.
- Perceptual Skills — some games may require your child to use discrimination, matching and scanning skills. Draughts requires discrimination between game pieces and the ability to scan the board for potential moves. Guess Who requires the player to scan faces and pick out differences and attributes, such as hair colour, glasses and facial features.
- Memory Skills — games such as Memory, Concentration, Trivial Pursuit and Simon require participants to use external memory aids to succeed.
- Problem Solving and Planning Skills — Connect Four, Clue and Sequence require the development of planning and problem-solving skills. This type of game requires the player to develop a "plan of attack" and anticipate what other players might be planning.
- Fine Motor skills – games that require manipulation such as puzzle cubes
Companies that specialise in games and puzzles include The Happy Puzzle Company www.happypuzzle.co.uk and the Early Learning Centre for younger children.
Last modified 21/11/06
