Parent's Guide: the early days after your child's brain injury
Child rearing brings challenges to
all parents, and for parents of a child with an a brain injury, the
challenges can be magnified.
There are many issues, such as striking a balance
between protecting your child from harm, while encouraging
self-reliance and independence. It may not be clear, in
the early stages, what problems a traumatic brain injury has
caused, and it can be difficult to predict how much a child will
recover, and how fast.
It is easy to focus on the differences - to feel that the young
people with a brain injury, and the family, are
different from other young people and families. But in general,
most parents face a very similar range of challenges. Aim to focus
on these similarities and claim your place, and your child's place,
as part of your local community.
At times the emotional challenges can seem overwhelming. Grief,
in some shape or form, may always be there. Parents can feel
they've lost their privacy and sense of control - everyone else 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 value what they do
have. Many families also discover they're not alone-many find that
linking up with others in a similar situation provides great
Alongside the difficulties, lots of good things happen, and
families need to recognise and celebrate these. By and large,
families with a child with a brain injury get on
with life very competently.
Will my child be okay?
This is the most important question for parents in the early
days after abrain injury -be it either accident
or serious illness. 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 comes out of 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, from minute to minute. 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. 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
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,
and be ready for answers to change and become clearer over
Things you can do
The most important thing for your child is feeling held, loved
and supported by family and friends-even while in a coma. Always
talk and behave as if your child is conscious-we simply do not know
whether people at this stage can hear or understand anything of
what is going on.
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, doona and 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 be able
to do some of the day-to-day routine care for your child, if you
wish to. Talk to the nursing staff about this.
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, some time 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). Make chairs into a bed to get some sleep
and keep your energy up with meals at the cafeteria. 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. Quite apart from the physical demands of caring, changes
to your child from the brain injury may suddenly
become distressingly clear. Being prepared for this can help you to
cope with it and continue the process of readjustment.
Should my child be
If you are concerned about difficulties your child is having
with, for example, learning, memory, speaking, balance, vision, or
handwriting, such problems should always be thoroughly
assessed-whether or not your child is known to have a brain
injury. 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.
In the months ahead
The long-term effects of a brain injury may not be evident for
some time. Some may show up only years down the track, 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
- Problems in concentrating and remembering instructions
- Slowness in thinking about new things
- Less ability to join in familiar games and activities
- Difficulties understanding what's said or following a
- Decreased ability to re-tell the day's events or find the right
- Inappropriate sexual discussions or activities.
Talking to doctors & other
If you are concerned about any of these symptoms in your child,
or if there is any question of a possible brain injury, tell your
doctor of your concerns. 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
If possible, provide the doctor or specialist with the following
- When your child was hurt, injured or ill, and what
- 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
- Examples of how your child seems different now
- What you do to help your child.
References and further information
Many thanks to Brain Foundation Victoria for permission to adapt
their material for this fact sheet.