Balancing risk and independence for children with a brain injury

Risks come in many forms. Some are social, for example, inviting someone on a date for the first time. Some are emotional, such as talking about fears. The risks that most concern parents are usually those that might cause physical harm. Sometimes young people do dangerous things deliberately and sometimes they just don’t see the risks.

One of the important things parents do is to help young people learn to manage and judge risk. As parents, you are better able to judge what risks are acceptable and make sure your young person has the necessary skills to avoid danger. Parents who encourage independence and allow a manageable element of risk are showing optimism and confidence in their child.

Decisions about risk crop up all the time .e.g your child wants to go to shops alone, go to a party where you don’t know the parents, or cook something on the gas. Ask yourself:

• Does he/she have the necessary skills?
• Can I trust him/her to follow the rules?
• What are the likely risks, including risks to others?
• Are there dangers outside his or her control?
• What would make it safe?

It may be tempting to put physical safety above all else but saying ‘no’ too often can have a cost. Kids lose confidence, or rebel, or simply miss out.

The pitfalls and dilemmas faced by all parents can be magnified when the young person has a brain injury. The young person may be less capable of anticipating danger, judging risk, or showing self-control. It may be harder to learn the skills needed to be safely independent. These might be physical skills, and/or skills related to behaviour, judgement, memory and perception.

Impulsive behaviour can place the young person at risk. Loss of confidence, self-esteem and friendship networks may make the young person more susceptible to the influence of peer groups, as he/she tries to impress, fit in, and make friends.

At the same time, if you try to protect your young person by restricting them more than others of their age, this can also affect their self-esteem and relationships with other young people.

Research has shown that some of the most important factors that protect young people from getting involved in some of the riskier activities of adolescence are:

• a strong and caring family and school
• sense of connection to family and school
• personal skills that enable the young person to develop self-esteem and confidence.

Other things that help are:

• a stable family structure
• open lines of communication
• a pro-active approach to solving problems
• having a good relationship with an adult who believes in them such as a grandparent or a teacher.

It is always important to equip young people with the skills, knowledge and confidence to say ‘no’ to things they do not want to do. At the same time, risky activities are a normal part of growing up, and it is imperative to try to minimise any harm that may result.

Where a brain injury is present, there are further considerations. For example:

• Can the young person understand and remember instructions, rules or laws and apply general rules to specific situations?
• Are impulsiveness and poor judgement issues?
• Does the young person need any training or instruction to maximise the chances that he/she will act responsibly and safely?

• set sensible and firm limits based on your family’s values and respect for laws and regulations
• be a good example and role model
• try to keep the communication lines open within the family and listen to what your children have to say, respect their point of view (even if you don’t agree with it)
• provide a ‘safety net’ of appropriate supervision by being aware of your child’s friendships, knowing where they are at night, and being awake when they get home.

For young people with a brain injury, the small steps toward independence that their peers manage easily may require extra training or supervision. If they lack foresight or are impulsive, some activities possibly should be avoided, controlled or prohibited.

Very young children are generally under adult supervision when they walk to shops or cross the road. Sometime during primary school, many children begin to do these things without assistance. Throughout secondary school, young people are generally expected to get themselves to school and other places. With increasing independence, children and young people might, for example, want to walk to local shops alone, ride a bike around the local neighbourhood or take public transport to social events as well as to school.

A young person will usually want to do what others their age are allowed to do. However, parents need to decide whether their child with a brain injury has, for example:

• The necessary skills for traffic safety
• A good enough memory to remember rules, how to get where they are going and home again, and what to do if they have problems
• The necessary physical skills and reflexes for a bicycle or roller blades
• The ability to organise what they need to do, including things such as handling transport timetables and buying tickets
• If your child does not have the skills needed, then a structured learning program – combined with an appropriate ‘safety net’ – may help.

Some children and young people with a brain injury may be worryingly ready to trust and be friends with anyone and everyone. Younger children may not have the separation anxiety that most of their peers experience, because they are so used to seeing many different people in hospital. All age groups can be very trusting. This openness can have positive aspects, but it also exposes the young person to risk of danger.

Rules need to be very specific and structured about how to behave in particular situations, and need to be practiced over and over.

If the young person wants to play a contact sport, a neurosurgeon (if one has been involved) can say whether it’s safe and what precautions are necessary (for example, a helmet). Otherwise, ask your paediatrician or general practitioner to advise. The young person may need coaching to learn the rules of the game or to manage any frustration they may feel.

Using household equipment like stoves and knives can be risky if, for example, memory difficulties make it hard to learn a sequence of steps. Again, set very specific rules and practise and rehearse them repeatedly. Where necessary, you may need to put some activities off limits, or install protective devices around, for example, stoves. Talk to an occupational therapist about managing risks of this nature.

Some kids always seem to be looking for something ambitious – and possibly forbidden – to do. Try to step back and ask yourself what you would do for a child who didn’t have a brain injury. Make sure lines of communication remain open, boost the young person’s self-esteem, encourage more positive friendships and provide appropriate supervision – for example, have friends visit your house, rather than letting your child go out with them.

Obtaining a driving license will not be possible for some young people with a brain injury, but it will be an option for many others.

Brain injury related impacts that may affect a young person’s ability to drive include:

• Physical weakness and/or poor coordination
• Altered sensation – for instance, lack of awareness of one side of the body
• Difficulties in perception – for instance, difficulty judging distances
• Slowed reaction time
• Changed vision – for instance, a restricted visual field
• Difficulty concentrating
• Impulsive behaviour
• Confusion between left and right, difficulty in understanding maps and directions
• Risk of epilepsy.

Even if the effects of a brain injury appear minor, it is crucial that you find out the requirements to be met if someone is applying for a driver’s license and has a brain injury. It is important to get this done, as it provides you, your child and others with legal protection should an accident occur. Failure to disclose a medical matter may be an offence, and any license or permit obtained by false statement could be rendered null and void.

An assessment by an occupational therapist and/or a neuropsychologist is recommended.