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This section focuses on the different ways Encephalitis may affect families. The way a family deals with the difficulties brought by this condition is very personal. We do not want to impose on you how to deal with your emotions, we just present some examples of coping strategies and signpost to organisations that may be able to support you.
Encephalitis can be a bewildering experience for the whole family. 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. 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 fulfil the expectations you once had.
Very isolating experience
Encephalitis can be a very isolating experience. People may not have heard about Encephalitis and see your child recovered well physically. They think that everything is back to normal and do not understand your concerns and difficulties. Sometimes there may be feelings of shame brought by the illness and the behaviour after the illness. Your child may behave inappropriately with your friends and family and may say things that upset them or their action/inactions are socially inappropriate. They and you as a parent may be misunderstood or judged.
There are different ways of coping and below are some of the things we have learnt from supporting people over the years.
Finding a way forward
Acknowledge what has happened and look forward. You may need 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. Try to find a positive thing in what they do/how they are and focus on it. Get involved in their recovery and find out as much as you can about medication, treatment, prognostic and people’s similar experiences. Learn to take one day at a time. If you are having a bad day, remember: this is just a phase and it can get better.
Being supported emotionally is very important to all of us. Having someone who shares our concerns makes it easier to cope. For some family members having a supportive family will be enough. Or keeping a diary may help. Others may need 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 long 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.
Some family members develop a severe emotional response and depression may begin to dominate their lives. If you or a member of your family is struggling with these emotions, consult your GP about appropriate treatment.
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 such as 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.
Try and do at least one thing a week that is just for you – coffee with friends, gardening, 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 child sees 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. Build new memories to forget the stressful experiences.
Getting Practical Help
Ask for help, and learn to accept help from others. Remember: Acquired Brain Injury is a hidden disability, so unless you provide them with all the information it is unlikely people know about your needs or how to support you.
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.
Tips for working with Social Workers:
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.
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. ‘A break’ is all about giving you and the rest of the household some time off – 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.
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 may find the break 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.
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.
The Encephalitis Society is the operating name of the Encephalitis Support Group which is a registered Charity and Company Limited by Guarantee.
Registered in England and Wales No. 4189027. Registered Office as above. Registered Charity No. 1087843.