Parenting a Child with Brain Injury

It may not be clear in the early stages what impacts traumatic brain injury has had, and it can be difficult to predict how much a child will recover and how quickly.

Claim your place, and your child’s place, as part of your local community and focus on your commonalities, rather than your differences, with other families.

At times the emotional challenges can seem overwhelming. Grief, in some shape or form, may take time to accept. Parents can feel they’ve lost their privacy and sense of control, and that everyone has ‘good advice’ and knows best. You may feel isolated and ‘different’ from other families, or that there is no one there to help.

But many parents also say that this life-changing event has also helped them realise what’s really important and to value what they do have. Many families find that linking up with others in a similar situation provides great support.

Alongside the challenges, lots of good things happen too. By and large, families with a child with a brain injury are able to adjust well and enjoy life.

This is the most pressing question for parents in the early days after a brain injury. You probably won’t take in much of the information you are told at this stage so get people to write things down for you.

Your child may be in a coma, not opening his/her eyes or responding in any way. Coma may last for minutes, hours, days or longer. As your child emerges from a coma, he/ she will move into a ‘twilight’ zone-awake but confused, disoriented, maybe agitated and not making sense. This is known as post-traumatic amnesia, or PTA.

In PTA, your child may remember things from the past, but won’t remember things happening now. Ordinary things may look strange or different, or your child may imagine things that are not there; an experience that can be frightening or confusing both for them and their families. In addition, adults report experiencing quite terrifying vivid and realistic nightmares as they moved from the coma to the PTA stage. Younger children may find it difficult to believe it was a nightmare. Later on, your child will remember little or nothing of this time or may have a sense of it as no more than a blurred dream.

PTA may last for minutes, days, weeks or months. The length of time in PTA provides a reasonable basis for predicting how well your child will recover. The depth of coma and how long it lasts provide another indicator.

Talk to the staff on the ward – doctors, nurses, therapy staff – about your child and their recovery and how things may become clearer over.

The most important thing for your child is feeling held, loved and supported by family and friends, even if in a coma. Always talk and behave as if your child is conscious. It is unclear at what point someone at this stage can hear and understand what is going on around them. However, it is best to err on the side of caution, and assume that they will be able to understand you before you are aware of that fact.

During PTA your child will be less able to deal with the amount of noise and activity around and might easily become more agitated or restless. Try to pace interactions and inputs, so things happen at a quiet pace and only one thing at a time.

Bring in photos, the child’s doona and their favourite things to create a familiar environment. Help the staff to get to know your child; his/her interests, personality, habits, quirks and talents. You may find that you want to, or are expected to, do some of the routine care for your child. Talk to the nursing staff about what you are comfortable doing, and what you would rather have them do.

As the days go past, keep a book to record what’s happening. A book of this nature can be reassuring to a young person who realises later, that they have ‘lost’ and forgotten some days or weeks of their life.

You will need all your strength to get through this difficult period. Make sure you look after yourself while your child is in hospital (and afterwards). Some hospitals have facilities to allow parents to stay overnight. Keep your energy up with regular meals, even when you don’t feel like eating.

If you want some quiet time, go to the hospital chapel. Accept offers of help from relatives and friends, so you can spend more time with your child and your family.

Pacing yourself is still important when your child comes home from hospital. This can be a time of major readjustment for parents. Aside from the physical demands of caring, changes to your child from the brain injury may suddenly become more transparent. Being prepared for this can help you to cope with it and continue the process of readjustment.

Careful and thorough assessment of the traumatic brain injury or other brain disorder is vital to find the best way to help your child, whatever the cause or the diagnosis.

The long-term effects of a brain injury may not be evident for some time. Some impacts may not be evident until years later, when the child is challenged to learn increasingly complex skills and deal with more complex situations. Any of the following changes suggest the need for a thorough assessment to determine how best to help the young person:

• difficulty with new school work or activities
• difficulties with concentration and remembering instructions
• slow to learn about new things
• less ability to join in familiar games and activities
• difficulty understanding what is being said or following a conversation
• decreased ability to re-tell the day’s events or find the right word
• inappropriate sexual discussions or activities

If you are concerned about any of these symptoms in your child, or if there is any question that the injury may be more severe than first thought, speak to your child’s doctor. The doctor will normally examine your child and may make a referral to a specialist doctor such as a

neurologist, rehabilitation specialist or paediatrician. Other specialists who may be involved in assessment include a neuropsychologist, speech pathologist, physiotherapist and/or occupational therapist.

If possible, provide the doctor or specialist with the following information:

• when your child was hurt, injured or ill, and what happened
• what was done in the Emergency Department
• the name of any doctor who treated your child
• the changes you’ve seen in the child
• problems your child is having in school, with friends or at home – you may need to contact teachers and get feedback from friends
• examples of how your child seems different now
• what you do to help your child on a day-to-day basis

REFERENCES AND FURTHER INFORMATION:

The Royal Children’s Hospital – Children with Acquired Brain Injury: www.rch.org.au/kidsinfo/fact_sheets/Acquired_ Brain_Injury_ABI/