Synapse - reconnecting lives

A brain injury can disrupt the long and complicated process to move from childhood through to being a mature adult.

At each stage of development a child needs to master a particular range of new skills in physical, intellectual and social skills. Over time, these developmental changes should include:

• ability to handle complex ideas
• ability to concentrate and to remember what is learned
• increasing physical and social independence
• physical abilities, stamina, strength and coordination
• increasing self-awareness and sense of identity
• ability to express negative feelings and frustrations verbally.

 
These general trends are all important, but there is plenty of 'normal' variation in how they occur. Changes seem rapid during some periods and slow at other times and at any age, a young person may switch between more and less mature behaviours. 'Transition' times place extra stresses on children. These are times of major change. Some are imposed from outside: starting school, moving from primary to secondary school, leaving school. The most important 'internal' transition is puberty.

How a brain injury affects development

A traumatic brain injury and other types of brain disorder can disrupt development to a greater or lesser extent in areas like language and speech, learning, memory, thinking, behaviour, and physical functioning.

For children and adolescents with a brain injury, the situation is further complicated because their development isn't yet complete. They still have many things to learn and tasks to accomplish to reach mature adulthood.

A brain injury can range from very mild to very severe, with everything in between. There may be only a few observable effects, but with increasing severity, more areas of life are usually involved and effects tend to be more obvious.

Direct effects of a brain injury often involve social, intellectual and language development. They might, for example, affect abilities such as getting organized, controlling impulses, learning new skills or remembering things. Many young people also have slowed reactions and weakness in some parts of the body, which may affect what they can do and take part in, and their self-image. People with a severe injury may also have major physical problems that affect their ability to move about, care for themselves, and communicate.

Indirect effects result from the way the young person and others respond to the direct effects. These can include loss of confidence, changes in behaviour, social isolation, frustration, emotional problems and low self-esteem. Brain injury is not widely understood and some people may confuse it with mental illness or intellectual disability.

If there are no visible signs of having acquired a brain injury then a child's behaviour can be easily misunderstood.

Cognition

Generally, 'cognitive' (that is, thinking or intellectual) skills are most affected. It is often harder for young people to remember things, harder to concentrate, work logically through a process that involves a number of steps, or manage several things at the same time. They may also have some physical issues, for example, slower reaction times and poorer coordination than before.

These difficulties don't just affect school work. Because thinking skills play a large part in getting along with others, social interactions can be changed. There can also be a tendency to be impulsive, irritable, even aggressive, and this can affect relationships.

The myth of the resilient brain

It used to be thought that younger children were more resilient and 'bounced back' after a traumatic brain injury. But as children develop and grow, they build up an ever-increasing 'bank' of memory, learning, knowledge, language and life skills - the younger the child when the brain injury occurs, the smaller is the bank of stored learning. The young child has less to draw on.

This makes good recovery and adjustment more challenging. Effects of the injury may continue to appear over years, as the child's brain matures and is challenged to learn new and more complex tasks and skills.

How to assist your child's development

Helping the young person to deal with and/or overcome these effects can involve: 

• Taking special care to teach him or her the necessary skills; and/or
• Finding ways around the problem - 'compensating' for it.

The best approach will vary from person to person, and problem to problem. Professionals can provide advice. The key to success is to identify the nature of the difficulties, and to deal with them before the young person becomes discouraged and loses confidence. Young people with need lots of opportunities to practice skills that others learn more easily.

Assessment: the first and essential step is to obtain a clear and accurate assessment of all the young person's abilities and difficulties-whether the brain injury has just occurred, or there are worrying symptoms months or years after the event. Assessment is the basis for planning a specific program to build on the young person's strengths and address their particular needs, and set short-term and longer-term goals.

Setting goals: this planning and goal-setting should always be a team effort, with the young person, the family, and the professionals involved - a partnership that works to find the best ways of meeting each young person's needs, and the needs of the family as a whole.

The program needs to be tailored to your child's and your family's priorities and circumstances, to build on your particular strengths and skills. It needs to help you and your child adapt positively to the way things are now, and to foster your child's learning and independence.

In the first six months after an Acquired Brain Injury, recovery is at its fastest although progress may continue for years in cognition, language, physical skills, behaviour, emotional and social skills.

Re-assessment and planning, both formal and informal, therefore need to continue often over years, to track the young person's development and progress, and map out the path ahead. Remember that predictions made by professionals-even the most competent-may not always turn out to be accurate. This simply reflects the difficulty of making accurate long-term predictions with something as complex as Acquired Brain Injury.

Some general strategies

Individualized plans are important, but some general strategies may also help:

• Pitch your expectations at a level where success is likely
• Praise or reward small but significant steps toward a goal
• Break larger tasks (be they physical or cognitive tasks) down into small steps that can be learned and practiced separately
• Practice how to deal with difficult situations, recognizing that it may be hard to apply existing skills to new situations
• Focus on tapping into the young person's strengths, and changing the surroundings to compensate for things he or she finds difficult
• Respect the young person's dignity, help them achieve their goals for themselves and aim continually to build self-esteem and confidence
• Be consistent in your expectations and approach - don't chop and change the ground rules for the young person.
• Use a 'problem-solving' approach to difficulties, to find the solution that best suits the needs of everyone involved.
• Think about building informal supports for your child - for example, contact with other young people who have had similar experiences.

Try to give yourselves time off from rehabilitation every now and then, and just be together for a bit. Don't expect to change everything at once. It's easy to feel impatient when the young person is struggling to learn or re-learn skills after meningitis, a traumatic brain injury, encephalitis or other type of brain disorder.