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In this issue:

CHILDREN & ADOLESCENTS Bringing out the best in your child The early days for parents Causes and prevention


Bringing out the best in your child BRIDGE VOLUME 8 - September 2012


ISSN 1448-9856 General Editor: Project Manager: Contributing editors:

Barry Morris Glen Farlow Lisa Cox Clare Humphries Emily Ma Rick Davies

Synapse PO Box 3356 South Brisbane 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: W: Bridge is produced by Synapse (formerly Brain Injury Association of Queensland). Published quarterly, it welcomes contributions and news items, especially from members. Advertising rates are available on request. Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding.

Tips on maximising recovery

A road less travelled

Personal story of Tom’s recovery after a car accident


VISUAL DIFFICULTIES: Visit and view the free online version which can be expanded on screen. DISCLAIMER: While all care has been taken to ensure information is accurate, all information in this publication is only intended as a guide, and proper medical or professional support and information should be sought. Synapse will not be held responsible for any injuries or damages that arise from following the information provided. Material within does not necessarily reflect the policies of Synapse or the staff and Board of Management. References to other organisations and services do not imply an endorsement or guarantee by Synapse.


Coping with teenagers and surging hormones

Emerging sexuality

Supported by financial assistance from

INDEX 03 05 07 09 11 13 15 16 17 19 20 21 22 23 25 26 27 28 29 1 / BRIDGE MAGAZINE

Management of mild TBI in children The early days for parents Get the best from the health care team Bringing out the best in your child Supporting children & grandchildren Operation Sophie Children & ABI: causes & prevention Tips for parents A road less travelled Support for the family The Vinnies CEO Sleepout Behaviours you want to stop National Disability Insurance Scheme Occam’s razor SAIF - Cairns accommodation project Physical skills, brain injury & children Hope & miracles Emerging sexuality Alcohol & other drugs

One of the most common injuries Strategies & coping techniques Don’t be passive in the hospital phase Tips on maximising recovery When the adults have a brain injury Inspiring personal story from parents Basic prevention strategies for parents A neuropsychologist reveals all Personal story of Tom’s recovery A family’s needs usually change over time CEOs sleep out to fight homelessness Tips for parents on challenging behaviour Updates on this long overdue initiative Personal story by Rick Davies Update on this timely project in FNQ How ABI can disrupt development Personal story of recovery against the odds Teenagers and surging hormones Brain injury, teenagers & drugs

bridging THE GAP Jennifer Cullen, CEO of Synapse

Children & brain injury Raising a child with a brain injury brings the usual joys and rewards of parenting, but there are certainly tough times ahead as well. The most common causes of a brain injury for children are: • Encephalitis and meningitis • Near drowning • Poisoning • Falls • Motor vehicle accidents • Foetal alcohol syndrome • Shaken baby syndrome.

Recovery for children One of the most important differences between children and adults is that a child’s brain is still developing, and injury to a young child’s brain may often affect the development of overall abilities, rather than producing specific problems. Predictions of recovery are even harder for children than adults. Children tend to develop at different rates regardless of a brain injury, and specific issues may not become obvious till several years later as the child develops. Areas commonly affected are:

The good news The good news is there is that there is so much parents can do to minimise the chances of a brain injury in most of these situations (education is a great start). When a child does acquire a brain injury, early intervention and a person-centred approach to rehabilitation will help them maximise their recovery. We will cover many of these strategies  in this issue of Bridge.

• Sensory and motor • Cognitive • Language and communication • Social, behavioural and emotional. Influence of age on recovery The relationship between a child’s age at the time of injury and their long‑term recovery is not well understood. One particular

theory suggests that younger children make a greater recovery than older children due to neuroplasticity (the ability of the developing brain to reorganise itself to take over the functions performed by a damaged area). However, onging research has largely disproved this theory. In general, research suggests that injuries acquired at an earlier age are associated with lower levels of functional recovery or outcome across various skill domains. These findings support the view that positive longterm recovery is more likely when basic functional skills are developed prior to an Acquired Brain Injury. The influence of a child’s age upon level of recovery may prove less significant than other factors, such as: the severity and type of brain injury, the child’s pre-injury skills and experiences, family functioning, rehabilitation and support within the home and at school.

Synapse is funded by Home AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS and Community Care, a joint QLD Synapse Inc. T: 07 3137 7400 E: Commonwealth and State/ QLD ABIOS (Acquired Brain Injury Outreach Service) T: 07 3406 2311 E: Territory program providing assistance Synapse isfunding fundedand by Home and for QLD Headway Gold Coast T: 07 5574 4311 E: AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS in need. CommunityAustralians Care, a joint CommonAUS Brain Injury Australia T: 1 800 BRAIN1 E: QLD Brain Injury Association of Qld Tel: 07 3367 1049 Email: Web: wealth and State/Territory program NSW Brain Injury Association of NSW T: 02 9868 5261 E: providing funding and assistance AUSVICBrainBrainLink Injury Australia Tel: 02 9591 1094 Email: Web: Services T: 03 9845 2950 E: for Australians in need. NSWTAS BrainBrain InjuryInjury Association of NSW 5261 Email: Web: Association of Tasmania Tel: 02 9868 T: 03 6278 E: Headwest 08 9330 E: Web: VIC WABrainLink Services Tel: 03 9845 T: 2950 Email: SA Brain Injury Network of South Australia T: 08 8217 7600 E: TAS Brain Injury Association of Tasmania Tel: 03 6278 7299 Email: Web: NT Somerville Community Services T: 08 8920 4100 E: SA Brain Injury Network of South Australia Tel: 08 8217 7600 Email: Web: NT

Somerville Community Services

Tel: 08 8920 4100 Email:



Management of mild traumatic brain injury in children Brain injuries are one of the most common childhood injuries

The highest incidence of brain injury for children occurs for those younger than 18 months old. Falls and motor vehicle accidents are the most common mechanisms of injury resulting in mild head injury, with boys having a higher incidence than girls (Falk 2007 p. 49, Schutzman et al 2001 p. 983). Why children are more at risk Children are more susceptible to head injuries due to their large head-to-body ratio, thinner skull and relatively weak muscles in the neck. Also, there is more space within a child’s skull for the brain to move within, along with a higher risk of cerebral edema (the accumulation of water within these spaces). The myelin sheath on brain nerves is thinner for children (myelin is like the plastic insulation on electrical wires) and their highly flexible bones means that traumatic forces extend to deeper structures, creating injury without fracture (Cook et. al 2006 p. 59). Symptoms of brain injury in children Immediate post-injury signs and symptoms: • Headache • Dizziness • Confusion • Visual disturbance • Mental slowing • Loss of consciousness • Amnesia 3 / BRIDGE MAGAZINE

• Vomiting. (Yeates & Taylor, 2005) With or without a period of unconsciousness, in the first days or weeks after injury, a constellation of neurobehavioural changes can be seen in children, such as: • Headache • Dizziness • Fatigue • Sensitivity to light and noise • Difficulty concentrating • Trouble remembering • Increased anxiety (Mittenberg et al). The symptoms following a mild traumatic brain injury can be complicated as they are non-specific and may in part reflect premorbid difficulties, the effects of injury more generally, or specific fears and expectations associated with cerebral trauma. Some studies also show parental anxiety can affect the child’s reported health following a head injury (Falk 2007 p. 53). The following are often important factors of influence (although more research is needed): • Severity of the mild traumatic brain injury • Age at injury • Premorbid “brain reserve” • Genetic vulnerability • Premorbid learning and behavioural status • History of previous concussions • Family expectations and functioning • Existence of co-morbid conditions such as

post-injury stress or pain • Motivational factors and litigation status • Type of post-injury management. Even when a CT scan shows no visible injury, further problems can arise with the child’s function, cognition and behaviour up to two years after the initial brain injury. (Cook et al 2006 p. 59, Falk 2007 p. 53) Management & recommendations Most symptoms resolve by three months post-injury. It is essential that competent caregivers are given discharge instructions on signs and symptoms of complications in brain injuries. Providing developmentally appropriate education and written information to the child has also decreased the incidence of ongoing problems. Follow-up evaluation is recommended one to two weeks post-discharge as symptoms can be exacerbated by stress, depression or anxiety and can cause significant psychosocial problems. The importance of preventing another brain injury should be emphasised to families, as repeated brain injuries in close succession have been found to have a cumulative effect and can lead to severe memory and cognitive dysfunction, motor deficits, coma and death. Graded return to school Generally, mild traumatic brain injury does not typically result in lasting academic problems; however the child should have

Brain injury An Acquired Brain Injury (ABI) can have a devastating impact, not only for the person who acquires it, but also their family and friends. It can dramatically affect memory, motivation, personality, mood, senses, selfawareness and behaviour, yet often the person will appear unchanged physically.

at least a few days rest while they are still symptomatic. This is important before they return to school as increased cognitive or physical activity can exacerbate symptoms. The school should be advised of the injury and monitor for neurological deterioration. Returning to sport There are three criteria that should be met before returning to sporting activities: • No symptoms present at rest or with exertion, neurological examination should be unremarkable, and no findings should be apparent on neuroimaging (if conducted) • No high-risk activities for at least one to two weeks after the child is symptom-free for younger athletes (Kirkwood et al 2008) • Attention should be paid to the emotional toll that activity restrictions can put on the child, as anxiety and depression and a loss of contact with teammates and friends can occur (Bloom et al 2004 in Kirkwood 2008). Ongoing problems & management A child who has had a previous brain injury or premorbid behaviour and learning difficulties often has exacerbated symptoms and ongoing problems. Symptoms such as post-traumatic anxiety, pain and sleep disturbance should also be explicitly assessed in these children.

Persisting symptoms rarely produce long‑term negative outcomes; however if ongoing problems persist after four to six weeks postinjury, the child can be referred to a paediatric rehabilitation unit for multidisciplinary assessment and management. The aim is to reduce ongoing symptoms, prevent further complications and re-injury after a mild brain injury, and support with transition back to school, sport and the community. Optimal management tends to speed recovery, reduce associated morbidity and minimize distress during the recovery process. In summary After mild traumatic brain injury, responses of children and adolescents will differ depending on a host of personal, injury and environmental factors. Nevertheless, converging evidence suggests that a characteristic clinical course can be expected, and most children who sustain one uncomplicated mild traumatic brain injury will return to their previous level of functioning by three months after the injury.

The “invisible” nature of ABI means that diagnosis, treatment and support may not be given when it is needed most. As a consequence, the difficulties people with brain injuries face are easily ignored or misunderstood. Even family members and friends may regard a person with a brain injury who exhibits cognitive problems or changed behaviour as lazy or hard to get along with. There is very little understanding or knowledge in the community about brain injury and the impact it has on individuals and families. Long-term effects are difficult to predict and will be different for each person, but can include: • Decreased self-awareness and concentration • Memory problems • Low motivation and poor initiation of tasks • Inappropriate behaviour in social situations • Rapid changes in mood and angry outbursts • Inability to cope with stress and multiple demands • Depression and anxiety • Social withdrawal and loneliness. Support for both the injured person and their family is crucial to reduce the impact of these effects over the long term.

© Queensland Paediatric Rehabilitation Service. QPRS is part of the Department of Rehabilitation at Royal Children’s Hospital, Brisbane, and has a range of programs to assist children in all areas of life. For more information, email QPRS_Administration_team@ or ring 07 3636 5400.


The early days for parents Child rearing brings challenges to all parents, but the challenges can be magnified when a child acquires a brain injury Typical challenges are issues such as striking a balance between protecting your child from harm, while encouraging self-reliance and independence. Challenges faced by parents It may not be clear, in the early stages, what problems the Acquired Brain Injury (ABI) 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 person with ABI, and the family, are different from other young people and families. However, 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, 5 / BRIDGE MAGAZINE

or that there is no one there to help. However, 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 support. Alongside the difficulties, lots of good things happen, and families need to recognise and celebrate these. By and large, families with a child with ABI get on with life very  competently. Will my child be okay? This is the most important question for parents in the early days after an ABI – 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 usually move into a ‘twilight’ zone – awake but confused, disoriented, maybe agitated, and not making sense. This is known as posttraumatic 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 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, and be ready for answers to change and become clearer over time.

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. Look after yourself 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 ABI 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 assessed? 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 an ABI. Careful and thorough assessment 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 conversation • Decreased ability to re-tell the day’s events or find the right word • Inappropriate sexual discussions or activities.

Talking to doctors & other professionals 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 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. This article has been reproduced with the permission of BrainLink. Visit for a wide range of quality information available for free download. BrainLink is a Victorian service dedicated to improving the quality of life of people affected by conditions of the brain, and providing support to their families.

Qld Paediatric Rehab Service Queensland Paediatric Rehabilitation Service (QPRS) is part of the Department of Rehabilitation at Royal Children’s Hospital in Brisbane, Queensland. QPRS offers a range of programs to assist children maximise their function in all areas of life. We provide coordinated, family-focussed rehabilitation for children and adolescents with a range of disabilities resulting from injuries, illness or disease. We see children with: • Acquired Brain Injury as result of trauma, tumour, stroke, infection or hypoxia • Spinal Cord Injury or dysfunction • Limb Deficiency • Complex conditions of low incidence. Our programs include: • Intensive inpatient & outpatient rehabilitation programs

• Transitional programs to home and community • Multidisciplinary assessments & rehab planning • Consultative and outreach services including home, school & facility visits jointly with local professionals • Long-term follow-up and intervention as required • Group programs • Orthotic, prosthetic & rehab engineering services • Teaching and research programs. The Team The multidisciplinary team expertise includes paediatric rehabilitation medicine, music therapy, neuropsychology, nursing, nutrition and dietetics, occupational therapy, orthotics and prosthetics, physiotherapy, rehabilitation engineering, social work and speech pathology.

Ambulatory (outpatient) program Ambulatory services include: • Multidisciplinary clinics • Outreach clinics to Bundaberg, Gold Coast, Cairns, Toowoomba, Rockhampton, Hervey Bay, Mackay and Townsville • Telehealth • Group programs • Case Management (small pilot project) • Newsletter • Mild TBI follow-up • Phone reviews/contact • Therapy blocks • Outpatient therapy • School liaison and visits. For more information, ring 07 3636 5400 or email


Getting the best from the health care team

When a family member suffers a brain injury or neurological condition, there is much new information to absorb. It can be difficult to know who the best person is to answer your questions. If you need assistance from an interpreter to speak to a doctor or therapist, just contact this free service: The Translating and Interpreting Service: telephone 131 450. Consider keeping a diary of problems, symptoms and past treatments — the team can make better decisions when it has an accurate medical history and record of a person’s progress. Confidentiality between doctors & patients Getting the information you want is not always a straightforward process. Families sometimes feel challenged by the confidential


bond between a doctor and patient. A person undergoing treatment can tell their doctor not to give out any information about their condition to relatives, which can be difficult for family members involved in the person’s care. The doctor must respect that wish unless the carer or relative is also the person’s legal guardian. However, a relative or carer can make an appointment to see the doctor and share any concerns they have. The doctor may then consider those concerns when treating the family member.

Make appointments for the time of day when the person with Acquired Brain Injury is most alert if fatigue is an issue. Families should be sensitive if discussing issues about a person’s unusual new behaviour in their presence, or make a separate appointment to discuss your concerns. Take notes at appointments, or bring someone along who can help to remember information and take notes too. If you don’t understand something, ask the health professional to explain again.

Obtaining information

Ask for printed material on the condition or where to get information and support.

These tips can help your family get the information you need:

Ask the health professional to write a list of medications, and what each does.

Make a list of questions and book an appointment of sufficient length to answer them.

Ask for the results of any test, procedure or diagnosis, and for explanations of each.

Before leaving hospital or rehabilitation, ask each member of your health care team to write down the treatments that will be required at home. Seeking second opinions Some patients may want to seek a second opinion but feel uncomfortable about doing it. It’s perfectly okay to seek a second opinion on a person’s condition from another health care professional. Doctors and therapists are normally happy to suggest someone else or to provide a referral to any specialist you name. Ask for the medical records to be sent to the second doctor. After seeing the second doctor, you are free to choose your preferred specialist. Making decisions The person with the brain injury usually deals directly with the health care team. Sometimes however, family members or carers end up being the main point of contact. If a person’s brain injury affects their capacity to make informed decisions or provide informed consent about their treatment, you need to find out if they have appointed — or whether there is a legal order in place that allows — someone to act on their behalf at unexpected times like these. Enduring Power of Attorney: An Enduring Power of Attorney (medical treatment) is a legal document in which a person appoints someone to make medical treatment decisions on their behalf in the event that at some point in the future they lose their capacity to make those decisions themselves. If there is no formal order in place, the closest relative is legally allowed to consent to health care treatment, and is expected to make decisions that — to the best of their knowledge — reflect the known wishes of the person. Legal Guardian: If there is difficulty in establishing the appropriate decision-maker, there are doubts about the injured person’s wishes, or if there are differences of opinion about what course of action to take, there is an Administrative Tribunal in each State who can help you to appoint a legal guardian. Handling difficult communications It’s important that you remain well informed by gathering information and maintaining effective communications, but at times you may feel frustrated by the process. All hospitals have a staff member called a “client relations manager” or “patient-client advocate” whose role is to assist patients and their relatives with concerns or complaints about treatment or care. Ask to see them if you are having difficulties.

typical members of a health care team The following professionals are ones whom you may meet while at hospital, during rehabilitation or back at home. Case managerS plan and coordinate many aspects of a person’s care, link people to appropriate services, locate funding and help reintegrate them into the community. DietitianS tailor diets according to a person’s capabilities (e.g. difficulty eating and swallowing) and to other short and long-term issues associated with their condition. District or community nurseS provide a range of services to people in their own homes. Your general practitioner can refer you to this community service. General practitioner (GP): A GP is often the first point of contact after leaving hospital and may coordinate visits with other members of the health care team. NeurologistS specialise in conditions that affect the brain or the nervous system. They diagnose conditions, decide on appropriate treatment and monitor progress. NeuropsychologistS understand how brain damage can affect thinking, memory, behaviour and personality. They perform assessments and can provide ongoing treatment and management strategies to identify which functions have changed and suggest management strategies. NeurosurgeonS operate on the brain and spinal cord. Occupational therapistS assess a person’s ability to manage daily tasks and recommend any home modifications or physical aids they may need. They also help people to relearn skills, such as how to dress, prepare meals or maintain hygiene. PhysiotherapistS work on a person’s ability to move, coordinate and balance. They can help relieve muscle stiffness, develop exercise programs and can assess the need for mobility aids. PsychiatristS deal with disorders of the mind. Some are experts in the personality and behaviour changes caused by brain damage. Treatments may involve counselling and medication. PsychologistS help people manage their reactions to things like anxiety or challenging situations. In the case of brain injury, they help people to manage problems that are an emotional reaction to having acquired brain injury. Rehabilitation specialistS aim to prevent or reduce disability after brain damage through various physical therapies and activities. They help a person to become as independent as possible so that they can re-establish their life at home and community connections. Social workerS help people locate special accommodation needs, useful community and government services, support groups and provide advice on welfare benefits. Speech pathologisTS help people overcome problems with speaking and swallowing.

If you feel angry or upset, you gain little by directing your frustrations at a health professional. Here are two communication strategies that encourage helpful responses by avoiding blameful tactics. Try using “I feel” statements and “I” statements, rather than “you” statements. How to use “I feel” statements Instead of: “You people don’t tell me a damn thing!” try saying: “I feel so frustrated because I don’t understand this. Can you recommend someone for me to speak to?” Instead of: “If you’d slow down I might understand this mumbo jumbo!”, try saying: “I feel overwhelmed with all this new information. It would help a lot to hear that again more slowly.” How to use “I” statements instead of “You” statements Instead of: “You’re just drugging Dad to the eyeballs!” try saying: “I’m worried about the effect of the drugs. What other options are there?”

Instead of: “You’ve got to do something. She’s driving me crazy!”, try saying: “I need help. I’m really struggling to cope with Mum at this point.” Contacts Major hospitals, rehabilitation centres and GPs can supply contact details for all these health care professionals, or ask for a referral from the medical centre where main treatment occurs. Also check with the Brain Injury Association in your State. This article has been reproduced with the permission of BrainLink, from their excellent brain injury resource available for free download at This publication is split into sections covering medical issues, common changes after a brain injury, practical assistance and emotional issues. The website also has a wide range of fact sheets on many other issues. BrainLink is a Victorian service dedicated to improving the quality of life of people affected by conditions of the brain, and providing support to their families.


Bringing out the best in your child

Young people with a brain injury are – first and foremost – young people, with all the hopes, dreams and challenges this entails An Acquired Brain Injury (ABI) may be important, but it is only one aspect of the whole person when it comes to  a  child. Parents generally want the best for their children – to bring out their strengths, help them to ride out the difficulties, and enable them to develop into independent, loving and fulfilled adults. A brain injury can place extra obstacles in the way, and this article looks more closely at some of those obstacles and how to tackle them. Most importantly, it looks at building the positive things – confidence, self-esteem, involvement and enjoyment. These are the things to keep in your sights. The ripple effects of an ABI The direct effects of an ABI – the changes it may bring about in behaviour, thinking, learning, physical skills, the ability to use and understand words, memory and so on – often have wide-ranging ripple effects for both the young person and the family. For parents and family, behaviour problems in particular can be very distressing,


particularly if these problems are new and unlike anything that happened before the injury. They can be difficult or exhausting to live with, embarrassing, and a constant reminder of how the brain injury has changed your child. Problems may stem directly from the effects of the ABI. It may affect memory, insight, or the person’s ability to tolerate frustration. A young person who has difficulty relating to others, or who abuses people, may have real difficulties finding friends and become increasingly isolated. Physical problems like coordination and balance can add to the problem by excluding the child from school sports teams and playground games. Social and behavioural problems can be compounded by thinking (‘cognitive’) problems. It may be difficult for the young person to learn or relearn social codes of behaviour – things such as respect for others, empathy, and a mature understanding of right and wrong. It might also be difficult for a person with ABI to sense danger or anticipate the consequences of what they do.

Lack of friends, social isolation, and parental concern can have their own ‘ripple’ effects. The young person may, for example, lack opportunities to learn and practise important social and/or physical skills – sometimes because well-meaning parents shield their child from normal challenges, but more often, because the young person has difficulty in making and keeping friends. Parents may have no spare energy to address problems like this. The emotional and practical burden of looking after a child with ABI may leave them able to do little more than respond to crises as they occur. It may simply be too difficult to organise to do things that would benefit the whole family. There is often no quick or easy way through such problems, but there are lots of positive things that can help. Professional advice and assistance can be invaluable. First and foremost, it’s important to focus on strengths – those of the young person and of the family – rather than just on the problems. The young person needs encouragement and assistance to behave in positive ways.

A positive focus Bringing out the best in a young person means: • Enabling each child to express fully his/her own talents and abilities • Learning to build caring and satisfying relationships with other people • Acquiring the skills to be as independent as possible, and take on responsible roles in life. Two qualities are of particular importance in this process: • Self-esteem – having a positive view of yourself • Resilience – the ability to handle life’s ‘knocks’ and challenges. The support, love and respect of family members and especially during adolescence, of peers and friends, are the foundation for building resilience and self-esteem. An ABI can make things more difficult, but there are lots of positive things you can do to help your child build his/her skills, self-esteem and resilience. Bringing out the best in your child also involves enabling and encouraging them to be involved in the normal run of activities for kids, young people, and the community – doing the things that friends and peers are doing. Swimming at the local pool, joining the scouts, getting a pizza with friends, all help to build self-esteem and confidence and focus on the person rather than the problem. Encouraging appropriate behaviour The best basis for helping your child is a loving, caring relationship – not always easy in the face of challenging behaviours. Try to see your child as separate from the difficult behaviour – ‘I love you, but I don’t like what you’re doing’. This can help you to work together on the problem, without a negative focus on the child. Parents in general do lots of things to bring out the best in their child, and all these things can benefit young people with a brain injury: • Set specific rules and structures for particular situations, and rehearse these each time a similar situation is coming up • Praise or reward behaviours you want to encourage • Don’t reward behaviours you don’t want to see – ignore them or, if necessary, offer comment or an agreed punishment quietly, without drawing extra attention to the behaviour • Help your child to learn from experience by talking over what he or she did right or wrong, and how there might be other ways of responding

• Show your child, by your actions, how to handle difficulties and get along with others • Behave in the ways you want your child to behave – for example, be caring, empathetic and respectful of others • Most importantly, young people with ABI may need very concrete, detailed and explicit instructions and rules about what to do in particular situations (for example, who they should or should not hug), and parents may need to set very firm limits and keep a check on them.

Young people with severe brain injuries

Understanding difficult behaviour In trying to understand difficult behaviour: • Try to put yourself in your child’s shoes, to see the issue from his or her perspective • See behaviour as a form of communication, and try to understand what your child is expressing through difficult behaviour • Be aware of your own responses, as sometimes kids push our buttons, knowing how to make us react, and we respond automatically. Young people with ABI can take responsibility for their behaviour, given the right supports. They can learn appropriate ways of behaving, but like everyone they’ll learn best when the goal is something they want to achieve for themselves. It’s important to respect young people’s own choices and priorities. Progress can be slow and uneven, so persistence and patience are important: • Focus on the things your child can do well, and build on these • Break each task into small steps, and help your child to master each step one at a time • Provide lots of opportunities for practice • Keep long-term goals in mind, as well as dealing with crises • Use a problem-solving approach with your child consistently to agree on ways to help that best meet the needs of everyone in the family. Again, professional support can be invaluable in helping to analyse the problems and finding positive ways for you and your child to address them. For more information about accessing counselling or support, contact your local  Brain Injury Association.  This is an excerpt from a publication published by BrainLink Services Ltd. Brainlink is a statewide Victorian service dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families. Ring 1800 677 579 or visit

A severe Acquired Brain Injury (ABI) generally involves a slow rate of improvement over a long period of time. After moving on from acute hospital care, the person may still need intensive nursing and therapy. If this is provided in a nursing home, a young person may need additional services to realise as fully as possible his or her potential for improvement over the longer term and for return to community living. However, nursing homes generally are designed primarily for aged people. The needs of young people with severe ABI are different in many ways: The concept of ‘recovery’ is different. Rehabilitation may be slow and they may remain highly dependent, but young people need opportunities to become as independent as possible, within the limits of their injury. Where possible, they need to take part in community-based activities that are appropriate to their age and interests. Their care needs are usually very complex. These young people require a range of therapies and other interventions, regular monitoring of their health status, and access to acute hospital care to prevent relatively minor problems becoming major medical crises. There is usually a different pattern of family involvement. Families, and often friends as well, tend to visit more often, and there may be regular visits home – though this may be possible only with considerable support. Contact your local Brain Injury Association to find out about accommodation options or support programs that may be available in your State.

This is an excerpt from a publication published by BrainLink Services Ltd, a statewide Victorian service dedicated to improving the quality of life of people affected by conditions of the brain. Ring 1800 677 579 or visit

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Supporting children & grandchildren How to help children cope with the illness or disability of a parent or grandparent; communication, common reactions to chronic illness, and how to maintain a stable environment Children have the right to know about things that affect the family. Adults often think they can protect children from unnecessary distress by not discussing serious illness, but it can do more harm than good. Children know when something is wrong. They see that adults are upset or behaving differently, and they overhear conversations. They see physical changes in their loved one. It is best to talk through the issues with them. Children have an amazing ability to deal with the truth. Even very sad truths relieve anxiety over uncertainty. Once they understand what is happening, they may also be a support and comfort to you. Keeping kids in the dark If children are not given a clear and accurate explanation, they often imagine something

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far worse than the real situation. If you say nothing, omeone may tell them anyway, or they will gather misconceptions from TV, magazines or other sources.

Use words that are clear and precise. Don’t lie, but don’t talk unnecessarily about frightening medical or financial concerns. Do discuss how the child will be affected.

Children can feel very cut-off, forgotten or misunderstood. They may feel they are not important enough to be included. It is very common for children to think that they have somehow caused or contributed to the illness, especially if they aren’t told the truth about the situation. Young children may feel they have magical powers, and that what they wish will come true. For instance, “I got mad at Dad. Now he’s sick. Maybe I made him sick.”

Answer questions clearly, truthfully and in an age-appropriate manner. If there are questions you can’t answer, don’t be afraid to say, “I don’t know”.

Delivering the News

Chronic illness means that parents have less time and attention for their children, so children are often asked to carry extra responsibilities. All these changes can turn a child’s world upside down. There can be great

Explain what is wrong and about treatments your family member is having. Don’t give too much information at one time.

Don’t make promises you can’t keep — “Mummy will be fine, I promise”. Reassure young children that nothing they have said, thought or done could have caused the illness. Typical Responses of Children

frustration and anger, with the responses to match.

adult’s. Talk about and share the sadness and the happy memories that will remain.

Guilt: Some children will feel sorry for themselves when a parent is sick, then feel guilty because they are not feeling sorry for the parent. Some will feel angry at their parent for being sick and wish they weren’t there, and feel guilty about that too. Other children try to make up for their guilt feelings by being super-good and setting unrealistically high standards for themselves.

Some children may need reassurance about how people die. For many, their only knowledge is the violence they see on television. Contact a grief counsellor for suggestions if you feel uncertain about how to discuss death.

Resentment: Children can resent having to help a sick parent when they are so used to being looked after. Children may act out their resentment and fears by running away or dropping out of school. Regression: Children of any age may regress in behaviour. Know that it’s just their way of saying, “I’m still here!” and “I’m just a kid. I need someone to look after me”. Inappropriate behaviour: Some children laugh or behave badly to cover up their real feelings, their lack of understanding or their discomfort. Attention-seeking: Children sometimes act sick to get attention. Some may also begin to compete for the healthy parent’s attention, or become clingy, afraid that something bad will happen to their parent. Confusion of roles: Teenagers face a tough time — just when they are trying to be independent, a parent may need to depend on them. Suddenly the roles are reversed. Some teenagers rebel, some may regress, some are too embarrassed to bring friends home, and others may take on heavy responsibilities and mature too quickly. Sometimes kids withdraw, subconsciously trying to become more independent. Communication breakdown: All children find it difficult to grasp how illness could cause someone they love to treat them differently. Carers have described children who become frightened of their parent’s behaviour and who can no longer communicate with them. Some avoid visiting their family member because they can’t cope with the changes. As an Illness Progresses Keep children and other family members well informed: as the symptoms or effects of brain injury appear and progress — personality changes, physical disability, inability to participate, speech and memory problems — explain and discuss these changes. Help them to understand that even if grandpa’s face or voice changes, it’s still grandpa underneath. If death is an issue, it is good to talk about it. What you say will depend on the age of the child. Remember that a child’s understanding of “soon” and “later” is very different to an

Give the child answers about their practical concerns — who will take them to school if mum can’t? Where will the money come from if dad isn’t working? Children’s fears run easily out of control, so the truth may seem much less frightening. You may find children have concerns you never considered, but no worries about the things you thought would trouble them. If a child seems worried, ask about their fears or what they think might happen, and correct any wrong impressions. For emotional support, try to instil children with feelings of hope — while there are things to be sad about, there will still be lots of good times. Reassure them they will always be loved and cared for. Children will let you know how much they can handle and what they want to know. Remember to listen well and to keep your ears open. Talk about your feelings, the feelings of the person you are caring for and the child’s feelings. Share feelings of sadness and happiness. Don’t be afraid to cry in front of children or to let them know that you cry. They need to know that it’s part of how people cope. Involve them. Children need to be told how they can help. For instance, they might visit or talk with the grandparent or parent. You may need to suggest things that they could do together. The child might be able to help the carer in some way, which helps them to feel that they are contributing. Maintaining Stability in Change Reassure: the most important thing you can do is to let the children know you understand that things are difficult for them and that you love them as they are. Routine: keep things as normal as possible. Stick to a daily routine if possible. Be flexible: if plans need to be changed because of an emergency, try to be relaxed about it and involve the children as much as possible in the changes. Inform supervisors: let the children’s teachers and perhaps the school counsellor know about the home situation. Their suggestions and understanding can often help if there are any problems.

Flow-on effect: serious illness in the family can have a flow-on effect, creating disturbances in other areas such as eating, sleeping, schoolwork or even friendships. Be on the lookout for these. Maintain discipline: disciplining children may be difficult, particularly when they are acting up to get some much-needed attention. However, a breakdown in discipline can convince a child that something is very wrong at home. Set firm limits and find ways to enforce them, for your sake and the child’s. Let the child know that you understand, love and accept them — but not their misbehaviour. Reward good behaviour and let them know how much you appreciate their cooperation. Express feelings: keep talking about feelings. If you don’t, your children will also bottle up theirs. Children can shut down their feelings if sharing or expressing them is made to seem unnatural. Don’t be afraid to express sadness — it’s part of life. Sharing feelings can also strengthen the bond between you and your children. Seek support: there is no need to battle on alone. If problems persist, help is at hand. Talk to people at your school, hospital, church or seek out professional counselling, either for individual members or the family as a unit. Genetic Testing Older children may be concerned about the possibility of inheriting their parent’s condition. Some conditions are inherited directly or there may be a genetic predisposition. These possibilities are discussed in fact sheets on each specific neurological condition that can be obtained from BrainLink (free call 1800 677 579). Genetic testing is available for some conditions. Because the results can be upsetting and create difficult decisions, anyone who chooses to have it must first see a genetic counsellor. Counsellors map out the family tree to identify the pattern of genetic inheritance and to determine a person’s risk level before discussing the possible outcomes of testing. Your condition-specific support organisation can provide more information. This is an excerpt from a publication published by BrainLink Services Ltd. Brainlink is a statewide Victorian service dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families. Ring 1800 677 579 or visit

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Operation Sophie A family’s long ongoing journey in dealing with their daughter’s brain tumour Most everyone’s had that conversation. You know the one where you explain what you’d do if you won the lottery? So if by chance you were lucky enough, you’d have some sort of inkling as to what to do next. On the flip side, no one really has the conversation about what you would do if you were incredibly unlucky, as in our case. We were totally unprepared when the doctors diagnosed our eldest daughter, Sophie, with a brain tumour. Up until the very point we were told we were still hoping that it might be something else. The bad news Funnily enough, we took the same lift up to our daughter’s room at the Cairns Base Hospital with the doctors who were to tell us the news. We had a lovely conversation about the weather. I suppose they didn’t want to ruin the last precious moments before our world was thrown upside down. One doctor was also kind enough to make some excuse about the computers not working, and instead of showing us the gruesome scan results, they drew us a picture of what was going on inside our little girl’s head. The

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messy, downsized version gave us time to digest the surreal news overnight before the very real and graphic scans were shown to us. They revealed the mandarin-sized tumour taking up the best part of the left side of her brain in the part that affects mobility and speech. It explained the changes in her behaviour, her clumsiness and sudden inability to walk. The images also gave us a reason not to question the sudden rush to get us down to Brisbane to have an operation to remove it. The pragmatic approach to coping In the haze of that Saturday afternoon, I remember a nurse commenting in disbelief when my husband asked about flight details. She couldn’t fathom how, at that point in time, he could be asking that sort of question. My husband was quite frank in explaining that wasn’t this the type of question that needed to be asked? And so was began my husband’s role in our journey – that of organising the next step and that of being ‘quite frank’. He became captain of what was to become Operation Sophie. A name that encompassed the roller-coaster ride that was our daughter’s

treatment, recovery and rehabilitation, and also the way we kept everyone who cared informed. This was my husband’s coping mechanism, a pragmatic attempt at keeping things as normal as possible in an entirely abnormal situation. I’m very proud of his ‘keep calm and carry on’ attitude and knew that there was no other person I’d rather go through this with. Numb For me it was an entirely different situation. I now understand when people in times of crisis say they felt numb. I lost all sense of time and place, coffee tasted like water, and my breast milk dried up. I became two different people. One of me was saving strength and relying on others to tell me what I should do (eat, shower, sleep) and the other me was happy, normal mummy trying to keep it together for my two girls. The most horrible day of my life – the day before our daughter’s operation – is firmly etched in my memory. Amidst the tests, doctors’ appointments and explanations of what was to come, were little moments of joy. Like a short trip to the Wonder Factory (a play area for children at the hospital),

observing the fish swim around in the fish tank in the hospital ward, and watching Sophie’s favourite film (The Lion King), albeit through gushing tears. That night, my husband and I realised that even though we didn’t know what our daughter would be like after the operation, we knew that she was our proudest achievement to date. The operation The operation took eight hours. This was a good thing. We’d been told no news was good news. When finally the two neurosurgeons came to tell us the results we were a little confused. The first surgeon came in, sat down with slumped shoulders and head hung low. The other bounded into the room and was bouncing on his heels. The surgery had gone well. The tumour had been mostly if not fully resected. It appeared benign. “Wait for the test results” they said, but it looked pretty good. Not only was there confusion in terms of their differing body language, but how could they be sure that everything went so well as to tell us straight away? We put that to the back of our minds as we went into ICU to see our little girl. She was alive and fighting, and at that point, that was all that mattered. The following days were traumatic but went by fast. It seemed the early diagnosis was true, and we continued to get more encouraging news. The tumour was indeed benign and further scans revealed it had been entirely removed. There seemed to be no infection and no need for a shunt or adjuvant therapy. Her recovery was swift and positive. Sophie could breathe on her own, she remembered who we were, and boy was she hungry! It wasn’t long before she was talking again, sitting up in bed, and watching the television. A week after surgery she was out of bed to see a visit from the Wiggles. Three weeks later, we were finally discharged from hospital. There was a downside to the cure, however. As the tumour was so large and had taken up so much space in the left side of Sophie’s brain, there seemed to be little or no movement on the right side of her body. The doctors were not sure but there was a very real chance she may not walk again. Rehabilitation Sophie had well and truly made an amazing recovery from the surgery. But it wasn’t long before we realised how important her rehabilitation was. While still in hospital the rehab doctors and therapists saw her at her bedside, applied casts and splints to prevent her muscles from seizing up in her arm and leg, and in between observations and administering medications, began a thorough program to get her right side moving again. Once discharged, our entire focus became

scans and surgery The treatment to remove or reduce the size of such a cystic tumour involves surgery. Surgeons work to remove as much of the tumour as possible while trying to minimise damage to healthy tissue. To gain access to the tumour in Sophie’s brain, surgeons needed to perform a procedure called a craniotomy. An MRI stealth guided craniotomy was performed on 01/05/12 and the tumour was resected (removed). Stealth guidance works like a sat nav system in your car. It allows the surgeon to use a wand or a pointer to see exactly where they are in the brain or on the skull. A post-operative MRI scan revealed no evidence of any residual tumour. The conclusion? No adjuvant therapy (chemotherapy, radiation therapy etc.) was required given the total resection, and Sophie was referred to the RCH rehabilitation team.

her twice daily therapy sessions. It may have seemed tedious to some, but her progress was so good we looked forward to each day to see what it would bring. Sophie’s rehabilitation was truly inspiring to witness. It was hard to keep up with the amazing pace she was setting. Her willingness and determination, together with her beautiful and friendly nature made it quite simple for the doctors and therapists to do what they needed to help her. She received Botox injections in her arm and leg and over that weekend, she began crawling. She was well and truly on the move! One day she lifted her hand up to show off a sticker she’d received, no one realised it was her right hand she was holding up. Almost two months after surgery to remove the tumour, Sophie took her first unaided steps. She had achieved what we were all hoping for, and no one was more excited than our beautiful Sophie. We could not wipe the grin off her face and her delicious giggle was contagious. Back to normal life It’s been three months since we were rushed to Brisbane and at this point in time we’re back home and settling into normal life again. Sometimes it’s easy to forget the incredible journey we’ve been on, especially as Sophie seems so well. A friend asked the other day ’Is she still our Soph?’ and the good news is, she is not only our Sophie but a new and improved version with a new lease on life. Gone are the headaches, the impaired vision and inability to concentrate, and she is thriving. The truth is, however, our daughter has an Acquired Brain Injury and has been diagnosed with Cerebral Palsy. Although she is walking she has little movement in her right hand, and relies heavily on others to complete simple daily tasks. Sophie has support in Cairns but will be travelling to Brisbane regularly for scans and therapy and the team at QPRS (Queensland Paediatric

Rehabilitation Service) has told us they’re in it for the long haul. In fact, they have explained that they will be helping Sophie until she leaves school. As well as managing Sophie’s care when we visit Brisbane they will be assisting us through periods such as when she returns to day care and starts both primary and secondary school. She does have a way to go in terms of her rehabilitation but the goals have been set high and she wants to succeed. Since being home there has been plenty of time to reflect on what happened to our family and the amazing response that has occurred because of it. An overwhelming amount of people contributed to making this story a really positive one. We cannot speak highly enough of the professional staff of the Royal Brisbane Children’s Hospital and in particular, the staff at QPRS and Ronald McDonald House. We acknowledge all the messages of support from family, friends and work colleagues and especially to all those who came to visit us. The quantity and strength of support brightened our days and we can safely say, benefited Sophie in her rehabilitation. We feel so thankful for our little network of carers in Brisbane who took care of us when we couldn’t take care of ourselves. Even better than a lottery win, we have so much to be thankful for. Visiting a children’s hospital daily can definitely change your perspective. We were never alone, even when we were so far from home. And as we were so well supported, it made it quite easy to be positive in such an unimaginable situation. Like if we’d won the lottery, we have an inkling as to what we should do next, and that is, making the most of each day. We feel incredibly lucky in that what’s important to our family has been made perfectly clear. Operation Sophie has definitely been a journey but we cannot help but find new positives every day, especially every time we look out our little miracle, Sophie. 14 / B R I D G E M A G A Z I N E

Children & brain injury: causes & prevention Common causes and basic prevention strategies

Let’s look at some common causes of a brain injury in young children, and steps that can be taken to reduce the risk. Encephalitis & Meningitis Meningitis and encephalitis are illnesses which may result in serious neurological problems - lasting brain damage. Meningitis refers to the swelling of the “meninges” which are the protective coverings of the brain and spinal cord. Encephalitis refers to the swelling of the brain itself. The range of possible symptoms and their rate of development vary widely, and can also indicate other illnesses, so specific diagnosis can be difficult. Encephalitis may begin with a flu-like illness or with a headache. Symptoms indicating that this is a more serious illness follow later and demonstrate a lowered (or altered) consciousness. These may include confusion, drowsiness, coma, and fits or small periods of unresponsiveness. Other symptoms include an aversion to bright lights, inability to speak or control movement, sensory changes, neck stiffness and uncharacteristic behaviour. An infant may have very subtle signs – fever, irritability and poor feeding may be the only signs of a serious infection. For the child less than one year old, fever and significant behaviour changes may be present – both situations indicate the need for immediate medical attention. The only preventative measures that can be taken to protect your child from encephalitis are to minimize exposure to mosquitoes and to make sure that your child is fully immunised. This will help to eliminate some of the possible causes. Near drowning For the children admitted to hospital following an immersion incident, there is up to a 20% chance of brain damage due to lack of oxygen. Young children can drown in only a few inches of water. The following steps will help to protect children: • Never leave young children alone in a bath • Empty the bath tub after use 15 / B R I D G E M A G A Z I N E

• Never leave a baby alone in a bath seat • Do not leave nappy buckets or any other containers with water in them within reach • Cover garden ponds and water features with strong mesh or fence them • Empty paddle pools after use • Check your garden after rain or watering to make sure water has not collected anywhere • Securely cover any spas • Make sure your swimming pool is securely fenced, and the gate is always closed, and there’s nothing climbable near the pool fence • Always supervise young children near a pool • If you live in the country make sure that dams, irrigation channels etc are fenced • Keep a resuscitation guide for children near your pool, and do a first aid course • All children of school age should be taught to swim. Poisoning Each year in Australia, about 3500 children are hospitalised because of poisoning. Poisonous substances include medicines, cleaning, laundry, gardening and car products, insecticides, perfumes, paint, plants, insects and many others. Toddlers between one and three years are most at risk of poisoning. Prevention strategies include: • Store medicines and chemicals out of sight and reach of children • Use medicines and chemicals safely, follow instructions and return to safe storage • Buy products in child-resistant containers and use child resistant locks on cupboards • Ensure all products are stored in original containers and are clearly labelled • Regularly dispose of unwanted and out-of -date medicines at your nearest pharmacy • Don’t call medicines ‘lollies’ • Check that the plants in your garden are not poisonous • Learn first aid procedures for poisoning.

Falls Falls are consistently the most common cause of traumatic brain injury in the young and the aged. High falls (more than one metre) are generally associated with trees, monkey bars and bunk beds. Bunk beds are not considered safe for children under nine years of age. Baby walkers can be dangerous and require caution if you do use them. Most walker injuries happen while adults are watching. Parents and other caregivers simply cannot respond quickly enough. Many falls are from prams. Make sure a harness is fitted whenever you place a child in a pram. Motor vehicle accidents Children are particularly vulnerable to head injuries during motor vehicle accidents. Many of these injuries can be avoided with the use of age-appropriate, properly fitted child restraints. Shaken Baby Syndrome A parent or carer may shake a baby when they feel frustrated and distressed from trying to settle a crying baby. However, shaking a baby can cause permanent brain damage and even death, as the head violently rotates back and forth, similar to whiplash. Babies most at risk are those aged up to two years because a baby’s head is relatively heavy compared to their body. Their neck muscles are also too weak to provide full support. Shaking a baby can cause the brain to bleed and swell by stretching and tearing blood vessels. If you have shaken a baby, or if you believe someone else has shaken a baby, it is vital you seek medical help immediately. Waiting will only cause more damage.

Coping strategies

Tips for parents Dr Catherine Cox on how parents can support their child in the months after the injury

A brain injury can be likened to a drop of water, as the effects radiate outward to families, friends, the workplace, the local community and even the nation. It is likely to be one of the most stressful periods possible for family members. Most families go through a period of shock or disbelief that such an event could happen. At first, you will be on “automatic” and nothing much will sink in. When you are ready, don’t be embarrassed to ask questions you think you may be repeating. It is normal to forget what people say to you in the first weeks following a trauma.

Some common causes of Acquired Brain Injury in children include traumatic brain injury, stroke, and infections such as meningitis and encephalitis. In the hospital This is often a very stressful time for the child and parents alike. Sometimes children are agitated, irritable, behaving in a way that is very out of character, confused, or may have difficulties with speech or motor functioning. If your child is agitated, minimise visitors and keep the environment calm. Your child should have a single quiet room.

Some children do not cope with a lot of noise, and younger siblings can be very noisy. Manage this by separating children, perhaps by providing different activities, before it escalates into a fight. Returning to school

Once they are more stable, rehabilitation (speech therapy, occupational therapy, physiotherapy) will commence. This may happen in the hospital, but also once you return home. Do the exercises prescribed by the therapist even if they seem rather basic.

A graded return to school, gradually increasing the time at school, is usually recommended. Your therapists can help you communicate with the teachers. Reduce extra curricular activities until the child is coping with a full school day. They may be poorly behaved after school as they will be tired, so have a good after school routine with quiet time built in. Reduce academic pressure, consider one-on-one tuition if the child has missed a lot of school, and keep an open mind about repeating a year if it is one that contains crucial examinations.

Leaving the hospital

In the long term

Slowly ease your child back into their normal routine. After a brain injury, children are often easily fatigued, and no one thinks or behaves well when they are tired. Allow children to rest as needed (this may include an afternoon nap, going to bed earlier or having quiet time in the afternoon, reading or watching TV). You should spread activities out and do not cram everything into one day.

In most cases the child will improve, but what is not known is how much they will improve or whether they will return to their previous level of functioning. Sometimes children can experience difficulties years later as they struggle to acquire new skills. If you feel that your child is having significant difficulties learning something even years after the injury, contact your neuropsychologist again.

It is okay to spoil your child a little, but as soon as possible start to treat them “normally” again. Have the same rules for behaviour as for siblings (with minor allowances). Praise attempts at independence, self-control and persistence with tasks.

Above all parents need to care for themselves, so do not neglect your own needs. Dr Catherine Cox is Senior Psychologist (Neuropsychologist) at KK Women’s and Children’s Hospital, Singapore.

It is important to remember that each member of the family and the injured person’s friends will be trying to deal with this trauma in their own way, such as: • A sense of unreality (“This can’t be happening to us”) • Feelings of anger or self-blame (“If only I hadn’t let him/her go”) • Despair and hopelessness • Frustration and sorrow. You may not want to leave the hospital for fear that something will happen as soon as you are gone, but it is important for you to get some rest, whether at the hospital or at home. People who accept support encounter less stress than those who try to ‘go it alone’. Look after your own emotional and physical health. It’s easy to stop looking after yourself, so: • Stay in touch with the ‘outside’ world • Organise a rotating schedule with other family members for hospital visits • Ensure you get enough sleep • Learn to ask for and accept help • Join organisations which focus their efforts on prevention, treatment, and research into brain injury. Be assertive (not passive or aggressive) about the rights of your family member to quality care and support, and make certain you receive all benefits to which you are entitled. Avoid attempts to be Superman, Mighty Mouse and Wonder Woman. Look after yourself, and allow yourself ‘off days’. Continue asking questions until you get answers, even though the answer will frequently be that there is no answer. Remember, you are the expert on the injured individual as you have a history of close interaction with the person. Although you may not fully understand the medical situation, you know the strengths, weaknesses and personality that existed prior to the injury. Photo courtesy of Fir0002/Flagstaffotos under the GFDL 1.2

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A road less travelled Tom’s ongoing recovery after a car accident in 2003

My name is Thomas Barry Bennett. I was born in the Calvary Hospital Cairns, on the 29th of December 1997, meaning I was born three days before newyear and four days after Christmas. I weighed 10.5 pounds (which is 4.8 kilograms) when I was born, which meant I was the heaviest baby mum had ever had. I was also mum’s latest (most overdue) baby. When I was three or four, my big brother Derrick had started playing piano and we had gotten the really old piano that had belonged to dads’ grandma. A funny memory of mine is Derrick playing a song called “Tom Toms” on the piano and I would run around the lounge room and dance (it was my favourite tune). Mum also had a favourite tune called “The rainbow” Every morning, mum would let Derrick and I feel her belly for any kicks. She was pregnant. I wanted it to be a girl whilst Derrick wanted it to be a boy. Normally there were kicks. When mum went to see what it was, it turned out to be a boy. Derrick’s wish had come true. After much discussion, we had finally decided to call him what Derrick had wanted to call him which was Luke, after ‘Luke Skywalker’ from ‘star wars!’ Little did any of us know that this wish was the last wish he would make in his life? But on the year 2003, my life and all our family’s life was changed forever. On our way home from a school sports carnival, my 26 week pregnant mother was driving us home when Derrick and I had looked tired, so mum turned the music up which put us to sleep. We went over a railway line and just as our car went over it, a train zipped by, knocking the back of our silver car, causing us to crash. 17 / B R I D G E M A G A Z I N E

Dad was at work doing his job (like you do), when he received a phone-call telling him that Mum, Derrick and I had been in a carcrash with a train. He rushed to the scene, but when he arrived, it was too late. My big brother, Derrick was dead. Of course, I had no idea that this had happened because I was unconscious and was going into a coma. Everyone Derrick had known was standing over his dead body on the side of the road. The ambulance had arrived at the scene in time to save my life. I had almost died myself. I was sent to the Cairns Base Hospital. But they couldn’t keep me there so they transferred me to the Townsville hospital where they operated to correct my fractured skull. But that wasn’t good enough. So they transferred me (one more time) to the royal children’s hospital in Brisbane. I was in a coma for a month, and still not conscious for several months after that.. In those months of nonstop sleep, I had a nightmare. In the nightmare, I dreamt that Mum, Dad, Derrick and I were walking along the bank of a river when… a crocodile jumped out of the water, grabbing everyone. But while the crocodile grabbed everyone else, I made a run for it. In the end, I remember walking along a cane field. Meanwhile, in the land of the living, it was Dads birthday. He was carrying me along a corridor, when I gave him the best birthday present of all. I smiled at him, meaning I was coming out of my coma. When I came out of my coma and was awake, I had a gastric tube up my nostrils

which was how I was fed. I went to therapy and worked my legs until they felt like falling off (I did carry-on quite a bit). I had a favourite therapist. His name was Shail. After that I did speech therapy every day. Even-though I did these two things every day, there was a bright side to it all. The therapists retaught me how to walk, talk and how to do sign-language. On the ground floor of the Royal Children’s Hospital, I went to a mini-school where we only played. One day while they were lifting me out of my wheelchair, my gastric tubes got caught in my wheelchair armrests and got pulled out. It was excruciatingly painful. I wailed in pain. Next, they put a long tube in my stomach that didn’t come out. The tube got pulled out. Next they cut a hole in the left side of my stomach and put a gastric peg in me. Soon after they had put my peg in, Dad took me to the Mater hospital where mum had given birth to my little brother, Luke. When we arrived in the room, Luke was fast asleep, but Mum was wide awake. When someone gave me an instrument which I shook and tried to wake up Luke. When Luke finally awoke, he cried (like babies do, no surprise). Now I regret doing it. A few days after dad and I visited Mum and Luke at the Mater hospital, they came over to the “Royal Children’s Hospital” meaning that the family could be together. Whilst I stayed in the hospital, Mum, Dad and (new to the family) Luke stayed in a hostel separate to the hospital. The hostel was called Leonard lodge.

Each morning, Dad would come over to the hospital and take me to my daily physio and speech sessions.

lady pushed a button on the lift and spoke in a little speaker on the wall. After a while the lift started going again and away we went.

There was a big problem. My gastric peg kept on flaring-up and hurting. I had an operation to cut the granulation off my tummy but that was excruciating,. That was even worse than having the granulation in the first place.

Sometimes, I would go and do some hydro therapy. After the hydro swimming, dad and I would have a shower together. One time as we were leaving, the door was shut and we were about to go when I did the signlanguage for phone. Sure enough, the phone was ringing inside the door. The reason I have such good hearing is because in the carcrash my left side of my skull got chipped. I’m not sure why or how but when I got the chip on my skull, I was blinded on the left side, just like everything on my left side of my body. Weakened! All except, of-course, my hearing! Even-though I’m blind in my left eye, I still have full feeling in it.

To try and fix the problem, a nurse twisted and twisted the peg until it came out and replaced it , and also put salt on it. Unfortunately, it didn’t help. All seemed lost and it looked like I would have to go through the same pain forever, until… Mum met this lady who had a son with the same button as me. She told Mum to dampen the material in Mylanta and wrap my button in it. That night, Mum got me into bed and wrapped my button with the dampened material. It hurt. But over a few days’ time, it was like it had never happened. The pain was gone. One morning (while I waited for dad) I tried to teach my fingers to flick and click. I ended up being able to flick and click with my right hand and I was only able to flick with my left hand. When dad finally got there, I showed off. I think he was impressed Because dad was always late coming over from “the Leonard lodge”, the friendly lady cleaner would often feed me toast for brekky. A funny memory is that the cleaner and I were going to therapy and we were going in the lift and the doors had shut and we were half way between levels when the lifts stopped. We were stuck in. So, the cleaner

When mum and dad used to take me to dinner, they would always put ear plugs in my ears otherwise I would not tolerate the noise.,as since the accident I really can’t stand noises at all. I always wanted to walk to the restaurants, but we sometimes didn’t have time. So, mum, dad and I came up with an agreement. We could walk to dinner or back but we had to go in a taxi the other way, because it was exhausting for whoever was pushing.

Studying after year 12 If you are considering enrolling in further study after high school in Queensland, you should be aware of the Queensland Tertiary Admissions Centre (QTAC) process. QTAC processes applications for the majority of undergraduate courses at Queensland universities, Bond University Medicine, TAFE Queensland, Southbank Institute of Technology and some private providers of post-secondary courses. QTAC also publishes courses for institutions that have their admissions managed directly by the institution, not QTAC. QTAC’s educational Access Scheme (EAS) is one of the ways in which tertiary institutions help applicants who have experienced difficult circumstances that have impacted on their studies. EAS makes the tertiary admissions system fairer for all applicants. Disruption to your schooling as a result of a brain injury may fall within Category 4 of this Scheme. For more information on this you can contact your school guidance officer, Queensland Paediatric Rehabilitation Service, or QTAC at EduAccess.html

© Queensland Paediatric Rehabilitation Service

© Queensland Paediatric Rehabilitation Service. QPRS is part of the Department of Rehabilitation at Royal Children’s Hospital, Brisbane. QPRS offers a range of programs to assist children maximise their function in all areas of life. For more information, ring 07 3636 5400 or email

notes from barry, tom’s father This is as far as Tom has got with his autobiography so far .He works away at it at every opportunity (apart from when he can watch a movie (must be his favourite past time ) or when he has to do homework (homework – yuck!). Tom had 11 months in Royal Childrens hospital doing rehab at the Queensland Paediatric Rehabilitation Service. When he left he could speak a little and mainly communicated with sign language. I think mainly due to his pre-accident nickname of “Tommy talk-a-lot “ he has been very determined to be able to communicate, and is making slow but steady improvements in his speaking ability. His early efforts at schooling at state school were a trial for all and not successful. To his great credit he has stuck to it and incredibly – considering his prognosis after the accident – has got to the stage where he is not only doing, but getting a strong pass in mainstream subjects in grade nine at his local high School. Tom now loves school. Tom has regular visits to QPRS at Royal Childrens Hospital to keep us all on track with his rehab. Tom loves catching up with all of the staff who I suppose in some way have almost become part of his extended family. He has had a few additional challenges along the way with a major operation in June 2010 to his hips feet and legs that kept him confined to bed for 6 months. Also through this time his mum Sally was losing a two year battle with bowel cancer and passed away in November 2010. This, as with his other setbacks in life, he handled stoically and with an amazing level of maturity. Tom is a happy boy with a wonderful attitude to life and a strong sense of humour , which have been his greatest assets in life. The positive effects of a caring small local community have also been immeasurable.

Learners permits & ABI Obtaining a learners permit is an important milestone in any person’s life, but if you have a brain injury there are some things that you need to know. According to Jet’s Law, people must disclose to Queensland Transport any condition which may impact on their ability to drive. This includes a brain injury even if it happened many years ago, so it is important to talk with your doctor before applying for your permit, and arrange an assessment if needed. This assessment may just be a visit to the doctor. For others, a Occupational Therapy Assessment may be needed to see if any special learning strategies, vehicle modifications or driving restrictions are needed. Then the doctor will complete a medical certificate stating these requirements and when they need to be reviewed. This medical certificate must be kept on you with your licence whenever you drive. Remember, learning to drive is challenging, and sometimes people with head injuries may require a little more practice and support to do this. Sometimes it is decided that driving is not the best option for you and other means of transport might be better suited.

© Queensland Paediatric Rehabilitation Service

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Support for the family When a child suffers a brain injury, the implications for the child and family down the track can change over time

For much of an initial hospital admission and rehabilitation program, the family is adjusting and trying to come to terms with what has happened and what this means for their child. It is often after the child is out of hospital and back living daily with the family that issues can arise for either the child or other family members. Life has after all changed and is different to how it was before the injury. Such change has been unplanned and largely unforeseen. It is important then that this is recognised and acknowledged and that families give themselves time to recover, adjust, rearrange and change how they relate to each other and those around them. Time to adjust It is important that each family member is given time to adjust and adapt in their own way and at their own pace. They will have their own responses to what has changed and happened. It is important to discuss this as a family in order that family members understand where each other is at in their respective adjustments. Look out for each other Looking out for each other is a key factor. Notice if someone is more withdrawn, distracted, emotional, angry or distant. Family discussion is helpful to let members know that you are aware and care, and then 19 / B R I D G E M A G A Z I N E

come to some agreements about how to support each other. Ask for help It is okay to ask for help. Some of the indicators that you or others may not be managing so well relate to things like sleep (or lack thereof ), appetite, extreme emotional changes, lack of interest in things or too much stimulation seeking, changes in levels of tension in the house or in a relationship, problems at school with school work or behaviour, and issues with peers and friends. Generally anything that indicates that someone is not managing to a reasonable level given the circumstances and seems out of character. Work as a team It is important to remember that your child or sibling with a brain injury will manage themselves much better if you are operating at your best and family ties are healthy and collaborative. Talk to others Being part of the family can make it hard to be objective. Sometimes someone outside the immediate family (like a friend, other relative, colleague or professional) can be helpful to talk to in order to get another perspective.

Keep in touch Adjustment can take a long time, and may change depending on life events, developmental stages and comings and goings. Family and individuals change over time and need help and support at various life stages. Contacting the Brain Injury Association in your State is a good place to start to talk about any of these issues that relate to you or a family member. Other supports Sometimes things can feel most overwhelming at night, on weekends or when you are alone or in the middle of a stressful event. At these times, if they are outside regular working hours, then support is always available on the phone through services like “Lifeline” (ph: 131114, open 24 hours seven days a week). The important thing is to talk about what is happening in your family and ask for help when you need it and recognise that as change is ongoing, adjustment and re-adjustment is a continuing process. © Queensland Paediatric Rehabilitation Service. QPRS is part of the Department of Rehabilitation at Royal Children’s Hospital, Brisbane. QPRS offers a range of programs to assist children maximise their function in all areas of life. For more information, ring 07 3636 5400 or email

The Vinnies CEO Sleepout The Vinnies CEO Sleepout takes place annually in every capital city across Australia. Organised by St Vincent de Paul Society, the event was created to highlight the plight of homelessness in Australia by challenging business and community leaders to experience homelessness first-hand for just one night. There are more than 100,000 Australians who find themselves homeless each night of the year. Just under half of these are women;

a quarter are under the age of 18. Regular readers of Bridge will know that a very high percentage of people are homeless, indirectly or directly, because of a brain injury. In June this year, 1,033 CEOs and business leaders rose to the challenge and slept out in capital cities across Australia. More than five million dollars was raised, and will go directly to Vinnies’ homeless services across the country.

Synapse CEO Jennifer Cullen spends a night on the streets of Brisbane to highlight the plight of homelessness

The aim of the Vinnies CEO Sleepout is not only to raise funds, but raise awareness of homelessness. The goal is not just to service the homeless, but to bring about an end to homelessness. The discomfort of sleeping on the streets is a fragment of the larger reality that the event hopes to impart upon influential leaders of the community. For more information, visit

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Behaviours you want to stop All children will, at times, do things that you want them to stop

These behaviours can be things like interrupting, arguing, fighting, yelling and whining. When children don’t want to follow rules and instructions it can be a problem for the family. Children need to be able to accept limits and to follow simple rules. This is important to get along with others. You can use 1-2-3 Time-out (see below) to deal with the behaviour you want to stop. How do I know when my child is misbehaving? • They ignore you when you ask them to do something • They say “no” to your requests • They fight or yell.

What is a logical consequence?

What is a time-out alternative?

Logical consequence means choosing a consequence that fits the situation. Remove the toy or stop the activity that is causing the problem, then:

A time-out alternative is a consequence for misbehaving. There are many alternatives and here are some suggestions:

• Gain your child’s attention and tell them what is the problem behaviour • Remove the activity or toy • Tell your child why you are giving the consequence, and for how long • After the time is up return the activity or toy to the child • If they do as you ask give them lots of praise. If they don’t do as you ask, then use 1-2-3 Time-out.

Why do children do this?

What is 1-2-3 Time-out?

• They are testing boundaries • They are asserting their independence • They are attention-seeking • They are bored.

State what it is you want the child to stop. For example, “Paul stop jumping on the lounge”. If he stops, praise him.

How to help my child accept limits & follow simple rules If your child is a toddler, child-proof your home. Make sure kitchen and laundry cupboards have child-proof locks on them. Place valuables out of reach. Close doors to areas that are not safe for a child to be in alone. Put keys out of reach and out of sight. Some useful tips include: • Have plenty of activities that are safe and fun • Set clear boundaries, limits and ground rules • Give clear instructions • Make sure you have your child’s attention when you start • Tell your child what to do, and be clear about what you want • Give your child time to do what you’re asking • Praise and encourage good behaviour. If the child does not do as you ask, use  a logical consequence or 1-2-3 Time-out or a time-out alternative.

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1 If the child does not stop the behaviour start the count – “That’s 1” 2 If the child continues for another 5 seconds count again – “That’s 2” 3 If the child continues for another 5 seconds count “That’s 3” and give them the consequence “Time-out”. If they are harming someone or something you should go straight to “That’s 3, Time-out”. Important points to remember include: • No emotion is shown and no discussion is entered into before or after the time-out • If your child is four years or older and is yelling or screaming while in time-out, wait until the behaviour stops, then count from that time – time-out does not start until the tantrum is over • If the child is two or three years old this often does not work, so let them out of time-out after the two or three minutes – if they are still crying you may just ignore the child • When you do not want to use the 1-2-3 time-out as a consequence, you can use logical consequences or time-out alternatives.

• Earlier bedtime • Loss of TV • Loss of Gameboy • Loss of the toy • No dessert or treat • Monetary fine • No use of the phone • Small chore e.g. clean bathroom sink • Larger chore e.g. weed garden • Not going to a friend’s house • No conversation for a time period • Removal of DVD, CD player or Ipod • No friends over • Reduced or loss of computer time. If removing a toy, game or a privilege, give a time limit for this, and do it as soon as possible to ensure the consequence is linked to the behaviour. This needs to be ageappropriate to the age and activity e.g.: • Loss of television for the evening • No friends over for a week • No conversation for 15 minutes Key points • Have plenty of toys and activities available to play with • Get your child’s attention before giving them an instruction • Give a clear, brief instruction to STOP the behaviour • Praise appropriate behaviour if the child stops • Back up instruction with 1-2-3 time-out if child does not stop • May use time-out alternatives • Remember the “no emotion – no talking” rule. © Acquired Brain Injury Outreach Service (ABIOS) ABIOS acknowledges that in the development of the parenting fact sheets it has incorporated ideas from the 1-2-3 Magic Program and The Triple P program. ABIOS is a rehabilitation service assisting people with Acquired Brain Injury in Queensland, their families, and carers. Contact ABIOS by emailing au or ringing 07 3406 2311.

National Disability Insurance Scheme (NDIS) To date, the funding for people with a disability has been a cruel lottery

The amount of support and services for people with a disability, their families and carers has depended on where they live, what disability they have, and how they attained that disability. The NDIS aims to change all of that. The Prime Minister released the Productivity Commission’s report on 10 August 2011 and all governments agreed with the recommendation to establish an NDIS. Rather than funding based on historical budget allocations, a funding pool will be based on actuarial assessment of need. It will recognise that disability is for a lifetime, and so it will take a lifelong approach to providing care and support. This means that assessment will look beyond the immediate need, and across the course of a person’s life. Taking a lifelong approach also means focusing on intensive early intervention, particularly for people where there is good evidence that it will substantially improve functioning or delay or lesson a decline in functioning. Importantly, an NDIS will support choice for people with disability, their families and carers, and put people in control of the care and support they receive, based on need. An NDIS will ensure people are no longer “shut out” from opportunities and from independence by providing the appropriate and necessary supports that allow people with disability to reach their full potential. It will nurture and sustain the support of families, carers and friendship groups – the very communities of support that are critical to improving the lives of people with disability. And it will include a comprehensive information and referral service, to help people with a disability who need access to mainstream, disability and community supports.

Being independent We all know how important it is to support young people to have some freedom as they mature. However, being able to socialise independently can be a challenge for some children who have had a brain injury, especially as they move into adolescence. Down the track some of our young people who have had a brain injury may have challenges due to learning difficulties or difficulties understanding social rules, which affects their ability to learn the skills of independence. Thus they may need to be taught the rules for “hanging out with friends”.

Latest updates The first stage of a National Disability Insurance Scheme (NDIS) will become real for people with significant disabilities in South Australia, Tasmania, the ACT, the Hunter in NSW and the Barwon region of Victoria. ACT: the timing for the launch of the NDIS may start in July 2013 or July 2014 and take a phased-in approach. NSW: the first stage will begin in the Hunter region during 2013-14 for eligible residents from the local government areas of Newcastle, Lake Macquarie and Maitland. Victoria: the first stage starts in the Barwon region on 1 July 2013 for eligible residents from the local government areas of the City of Greater Geelong, Surf Coast Shire, Borough of Queenscliffe and Colac-Otway Shire. South Australia: From July 2013, an NDIS will be launched across the State, focusing on children aged 0-5 with significant and permanent disability. By 2014 the age limit will be extended to 13 years and in year 3 all children up to 14 years. A total of around 4,800 children with significant and permanent disability are expected to benefit from the first stage of the scheme. Tasmania: The first stage of National Disability Insurance Scheme in Tasmania will cover all eligible adolescents aged 15-24. This approach has been chosen because it represents an opportunity to examine and improve the range of supports that need to be in place for young people with disability to ensure a smooth transition between school and work or higher education. As more detailed information becomes available it will be posted on the NDIS website at

In order to foster independence there are a number of key areas that you may need to ‘teach’, including: • safety (e.g. personal information, stranger danger) • using a phone • managing time • road safety plus reading and following maps • health and medication • catching public transport • money. Living in Queensland? The Queensland Paediatric Rehabilitation Service can help you plan the ‘what’ and ‘how’ of helping your child grow up and learn to be more independent in social situations. For further information contact your occupational therapist on 07 3636 5400 to have some brochures sent to you or alternatively to arrange an appointment.

© Queensland Paediatric Rehabilitation Service

Cognitive fatigue Cognitive fatigue is a special kind of tiredness that can be a common problem after a brain injury. The brain has to work harder to concentrate on tasks. Cognitive fatigue may present as difficulty maintaining attention, poor endurance for thinking tasks and a tendency to give up easily, poor school performance, headaches and behaviour difficulties due to fatigue (irritability, teariness and feeling sad). Fatigue can accumulate so that children may feel more tired in the afternoon or towards the end of the school week. Ways to help with cognitive fatigue • Ensure your child has the sleep they need at night (some children may also need a rest during the day if fatigue is significant) • Allow down time by breaking up cognitive tasks with physical activity or rest • Help your child to negotiate reduced school/ homework work load or ask for extra time to finish assignments • Apply for special consideration for exams (e.g. rest breaks and extra time) at school or uni.

© Queensland Paediatric Rehabilitation Service 22 / B R I D G E M A G A Z I N E

Occam’s Razor It usually pays to look at the simplest explanations for a problem first In 2001 I had a substantial cerebral haemorrhage. My family was told to say goodbye to me because few survive such cranial shock. My doctors were not sure I would live. When I eventually regained consciousness I was seriously damaged. I would never be able to work again (according to some) because too much of my brain had been damaged

the simplest explanation is often the right one Clear logical thinking has been around for a long time, even if it hasn’t always been exercised by many. Almost 2000 years ago Ptolemy stated an early version of Occam’s Razor: “We consider it a good principle to explain the phenomena by the simplest hypothesis possible”. For centuries, we believed that the earth was at the centre of the solar system, even though it took very complex explanations to account for this. Copernicus, Galileo and Kepler all met with much resistance when they said it was much easier to explain the way the solar system worked if the sun was in the centre.

I need to begin this short article with some disclaimers. First of all, I am not a medical doctor, and have no real medical training. I am not a trained physiotherapist, and my only knowledge of human movement and solutions to muscular and tendon aches and pains is what I have gained by reading and thinking. In other words, my experience is mine, and should not be read as advice to be followed by others.

I can remember my severe headaches. Even in the period after my coma, when I was at least capable of talking to staff through the dribble, I would tell the nurses that my head was aching. I would be given a pain killer, which would carry me through to the time when the pain returned and became somewhat unbearable.

Having said that mouthful, I am somewhat taken by William of Ockham. He was an English theologian and philosopher who lived between 1285 and 1349. He is familiar to many people today who listen to Robin William’s program on Radio National called “Ockham’s Razor”.

This continued on through the first year. At the end of 2001 we moved to Queensland, and I discovered massage as a way ahead. I spent most of 2002 having a weekly or fortnightly remedial massage. These days, some 10 years later, I attribute much of my healing to these early deep massages.

“William of Ockham’s Razor” is the idea that the quickest and most simple solution to a problem is usually the best.

My massage therapist spent much of the hour working on my upper back and neck. He would ease the knots out, and my headaches began to be less frequent.

I often think of this way of discovering a solution to a problem as I continue to try to find meaning in a severe cerebral hemorrhage of 2001. It could be that as you read this short article that you might discover a way to work through some of the issues in your own life.

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I started to quiz the therapist. He explained to me that since I slept on my back with my head on a pillow, the tendons which start at the bottom of my skull and reach down into the trapezius area of my back would go into a kind of spasm because of the way my head was lying on the pillow. I could avoid this

by sleeping on my side or on my tummy. I have since learned to take note of my sleeping position while asleep, and it is only very occasionally that, in deep sleep, I turn onto my back and sleep that way. Back to William: the solution is probably the most simple way to alleviate the problem. Avoid the headaches by sleeping on the side. How many CT scans, and MRI scans, could have been avoided, as well as the buckets of pain-killing drugs? My very serious question is: why didn’t my doctors check my stiff back-of-neck as a possible cause of headaches before they employed all the high tech scientific solutions? I have since found that Mr Ockham’s theory is useful in many areas of life. Maybe you have some areas of your own life where Ockham’s Razor might be of benefit. Rick Davies has been a contributor for many years and his constant theme of hope has encouraged many readers.

IF YOU CAN’T SEE IT, IT DOESN’T EXIST. Neurological Disorders, according to the World Health Organization, will surpass many diseases as the major cause of death and disability by the year 2020. With estimates at over 1 billion people affected world-wide, and an aging population, we should be more urgent in initiatives of prevention and early intervention. (WHO, 2007). 24 / B R I D GE MAGAZINE

Supported Accommodation Innovation Fund (SAIF) The Australian Government has allocated $60 million from May 2011 to June 2014 to build innovative, community-based supported accommodation places for people with disability. Supported accommodation and respite places are targeted at adults with severe or profound disability in need of supported accommodation or respite who may be on waiting lists and who may have ageing carers. SAIF aligns with the National Disability Strategy 2010-2020 vision for an inclusive Australian society that enables people with disability to fulfill their potential as equal citizens. SAIF also recognises that appropriate housing and support arrangements are critically important to supporting younger people with disability. SAIF is funding 21 organisations to deliver 27 supported accommodation and respite projects. Wabu Gadun Bulmba Gurriny Mukanji Centre Synapse will receive $4,595,760 through SAIF to build the Wabu Gadun Bulmba Gurriny Mukanji Centre. This translates as “Come share the good heart of the healing home” in the Yidinj language. The Centre will provide shared and independent living options for eight Indigenous Australians with an acquired brain injury in the Cairns region of Queensland. Partners on this project are the Indigenous Construction and Training Company (ICTC), the Abriculture Project, James Cook University, Wuchopperen Health Service and Apunipima Cape York Health Council. The housing model Hutchinson Builders will oversee the construction of the Centre. The building and landscaping design, as well as building materials, will be culturally sensitive and support Indigenous lifestyles and social norms. The Centre’s design responds to, and 25 / B R I D G E M A G A Z I N E

supports, Indigenous lifestyles. This includes layering of private and public external spaces to enable visiting relatives and families to socialise with one another, but also to retreat for privacy as required. The eight selfcontained living units will include spaces that promote external living, and include both external and internal cooking facilities. The Centre and the surrounding landscape will be interconnected in a way that encourages easy movement between the external and internal environments. The project includes wheelchair-accessible raised vegetable beds and native plant beds (Indigenous bush foods, medicinal plants and natural resources). The site will be surrounded by natural bushland. At the centre heart of the site will be a freshwater eco-swimming pool. Input on the design of the Centre was sought from (and is coordinated by) ICTC who bring together the Traditional Owners and Elders of the Gimuy Yidinji people to guide the design. The support model Support services will be provided by Synapse and will be delivered within an innovative and culturally specific Indigenous wellbeing model. While support services will be provided by Synapse, the model is built on the foundation of innovative partnerships and a holistic approach to shared care and case management. The Wabu Gadun Bulmba Gurriny Mukanji support model recognises the importance of land and ‘country’ as central to all aspects of Indigenous culture, and aims to help people establish links with community and ‘country’. The individualised support model focuses on disability and primary health care support within an Indigenous context, encouraging open communication and synergy between health care professionals, local and Cape York Indigenous groups; and the community.

Innovation & quality The capital works and support services will be delivered via an innovative partnership, with Hutchinson Builders partnering with the Indigenous Construction and Training Company (ICTC) to build the Centre and Synapse providing support services. The Wabu Gadun Bulmba Gurriny Mukanji Centre will involve Indigenous people with severe and profound disabilities, along with Indigenous community members, participating in maintaining the Indigenous food sources. The gardens will promote accessible and appropriately designed opportunities for inclusion in social, economic, sporting and cultural life. The model maintains a spiritual, physical and emotional connection to the land. The centre will incorporate innovative and culturally sensitive human resource policies to maintain long-term employment, provide career opportunities and increase the education level of employees. Synapse will coordinate and facilitate open communication from all service providers including primary health care, allied health professionals and alternative therapists in addition to local and Cape York Indigenous groups, including Traditional Owners and Elders. These strategies will include an Indigenous mentoring program and an Elders reference group to provide guidance to Synapse as the service provider. A planned outcome of the project is to encourage synergy within local disability and allied health care service providers and the wider community by encouraging organisations to work together for the benefit of the service users, the sector and the community as a whole. Further information If you would like more information about the Supported Accommodation Innovation Fund, please email

Physical skills, brain injury & children

Youth & brain injuries

An ABI can interrupt & complicate the development of a young person’s physical and everyday living skills There are many positive and constructive things that can be done to minimise the difficulties, maximise recovery, and find ways to work around ongoing problems. Changes in physical & sensory skills Physical and sensory problems can affect, to a greater or lesser extent, a person’s ability to get about and do simple, everyday things such as running, walking, getting dressed, handwriting, playing physical games and managing cutlery. Problems may include: • Weakness and changes in muscle tone, resulting in tight, stiff muscles (spasticity), or weak, floppy muscles which can affect one side of the body only (hemiparesis) or both sides and all four limbs • Decreased coordination (from a mild tremor to jerky movements) • Reduced balance and slow balance reactions so the person falls more easily • ‘Motor planning’ difficulties, affecting the ability to organise and carry out a sequence of movements e.g. to catch a ball or ride a bike • Fatigue, reduced stamina and endurance • Visual problems, including double vision, blurred vision, loss of part of the visual field, difficulty staying ‘fixed’ on an object or following it across the field of vision • Changes in sensations such as touch, pain and temperature, and/or decreased awareness of the position of the arms and legs which can place a child at risk of serious injury e.g. from burns they don’t feel. Often these problems are coupled with cognitive and behaviour problems, making it more difficult for the child to compensate for the physical difficulties. When the ABI has been caused by an accident, the situation may be further complicated by other serious injuries. The physical, cognitive, sensory and visual realms are all interwoven. For example, visual problems might make it difficult to focus on something in midline, to see and respond to things on one side, or to track a moving object. This might be coupled with slow

reaction time and poor coordination/motor planning. All these things together can make it very difficult to do something apparently simple, like throwing and catching a ball against a wall. Often it seems a child has fallen before there’s time to do anything about it. Visual problems may mean they don’t perceive a slight step or change in the ground surface; they may already have difficulty walking (such as an inability to raise their left foot); and they may be unable to feel the left side of their body (so are less aware of being off balance). Compounding these issues is often a slow reaction time. Taking all of this into account, its easy to understand why the child falls.

A large proportion of brain injuries are as a direct result of trauma, so it is not surprising that young people, particularly males, feature so strongly in this category. Recent research has indicated that the frontal lobes of the brain not only control our behaviour, emotions and impulses, but analyse the cause and effects of our actions. Adults do not fully develop their use of the frontal lobes until around 25 years of age. Until then, a different part of the brain has prominence – the amygdala – responsible for our more instinctive reactions such as the fight or flight response to danger. While a brain injury can result from a range of causes (e.g. alcohol, other drugs, failed suicide attempts, assault, sporting accidents, near drowning and infection), in adolescents and young adults we find that road crashes are the major cause. In most cases the incident could have been avoided. Since there is no cure for brain injury, the emphasis must be on prevention.

Recovery from physical problems is usually more rapid than recovery from cognitive, thinking and behaviour problems. Much of the physical recovery happens within the first six to 12 months after the injury, and active rehabilitation and family support aid this process. Some children and young people are nevertheless left with long-term physical and sensory problems. This is an excerpt from a publication published by BrainLink Services Ltd. Brainlink is a statewide Victorian service dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families. Ring 1800 677 579 or visit

Of all demographic groups, young people, particularly those aged between 14 and 25, most urgently need to hear messages about injury prevention. Unfortunately, it is this group that are usually the least receptive. Research shows that most young people don’t believe they can get hurt—the classic ‘it can’t happen to me’ syndrome. Efforts to prevent brain injuries are often designed to give young people a greater awareness of the potential outcomes of high-risk behaviour, of brain injury as a consequence of high risk behaviour, and the impact a brain injury can have on their lives. This strategy is based on the belief that if young people are better informed about the consequences of high-risk behaviour they will make alternative choices.

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Hope and miracles A personal story by Rich and Bobbi Paine on how recovery can sometimes be against all the odds

This story is about a young man of 16. A young man that had the sense of humour of a comedian, was full of one-liners and loved WWII history. A young man that was an honour student, a son, a brother, and had the dream of one day becoming a pilot. A young man full of life This young man’s name is Geoffrey. Geoff lived a rich, full life with a large brain tumour pressing against his brain stem. He was under the care of a neurologist for a neurological tic, but an MRI was never performed. When a second opinion physician ordered baseline tests, the tumour was diagnosed and what we once knew as a normal life was replaced with a rollercoaster ride of all rides. How does a family learn to pick up the pieces when a loved one suffers the traumatic events associated with a brain tumour and brain stem strokes due to complications? How does a family watch as the son and brother they knew lays in a bed for weeks on end in the ICU, and then a nursing home? Our child was lying in a persistent vegetative state, not able to move any extremity, and being fed with a G-tube. The prognosis was bleak at best. Geoff was given a one percent chance of emerging from a vegetative state, and we as parents were encouraged to pull his trachea, place him on a do-not-resuscitate order and let nature take its course. On numerous occasions, we discussed his funeral arrangements and his last human request of being an organ donor. 27 / B R I D G E M A G A Z I N E

Give him a year

New hope and a new future

I knew Geoffrey would not want to live in a vegetative state; I knew it would devastate him to know that caregivers were feeding, cleaning and taking care of his every need. As a family, we agreed to give Geoffrey a calendar year to see his progress before taking the previous medical advice. Daily, we went by his bedside, held his hand, washed his face, combed his hair, put cologne on him and talked to him as if he were living with us through our daily activities like normal. We laughed, we joked, we played board games, and we lived what was our new “normal” life. Our life that consisted of hospitals, nursing homes, emergency rooms, and ambulance rides. We crawled onto his hospital bed beside him for the closeness we knew he always cherished — and we cried.

Then one day, it all changed. Geoffrey started wiggling his toes. One encouragement led to another, and months turned into a year with Geoffrey moving his extremities, becoming mentally aware, recovering his memory, and responding successfully to rehabilitation.

It is an understatement to say tears fell. I would go days on end crying, only to regain my composure to walk into his hospital room. There were days I could not go, and my husband and our daughter would drop in and always tell him I loved him. Each night before our daughter went to sleep, she prayed that God would send angels to surround Geoffrey. We mourned his loss. We ached for his smile, his laughter, and his voice. One of the hardest things in addition to seeing our son lying lifeless is to see my husband on bended knee hovering over the hospital bed of his only son holding him in his arms. No words were ever exchanged, just silent tears. How does a family survive?

Today our son is 18, soon to be 19. Even though he uses a wheelchair, he is starting to get his vocalisation back, and he returned to high school this fall. His goal is to graduate with the class! He is mentally capable of continuing his education and has plans of college on the horizon. He has his sense of humour, he smiles, and he eats everything by mouth with the successful removal of the gastro-tube months ago. Families survive by never giving up hope. They survive by allowing each person to deal with the set of circumstances in their own way. They survive by trusting in the human spirit they know exists in us all. And they survive in knowing miracles can and do happen. The best thing is that Geoffrey is very much alive, he has beaten the odds. One huge miracle has the name of Geoffrey. No matter what prognosis may come your way never give up! Geoff is living proof. Lash and Associates Publishing/Training Inc. specialises in information and books about brain injury, blast injury, PTSD and concussion. This story has been reproduced with their permission from

Emerging sexuality Surging hormones and the wish for a successful social life both fuel the interest of teenagers in sex For parents, adolescence can be challenging. For young people, it is exciting and potentially risky, and an Acquired Brain Injury can increase these risks.

Good relationships, social skills, and good self-esteem provide a strong foundation for a safe passage through the turmoils of adolescence. This needs to be the central focus in assisting and supporting young people with ABI. It also helps to address many parent’s biggest concern: that their child with ABI may not have satisfying social relationships or be able to find a partner.

For example, when judgement, planning skills, social skills and self-esteem are all affected, a young person is at higher risk of unplanned pregnancy, sexually transmitted infections and sexual assault. These young people may be vulnerable to being exploited and manipulated, and sexual activity may be a response to feeling isolated. Impulsivity can further increase the risk.

For an extensive catalogue of information and services relating to relationships, sex, sexuality and sexual health when someone has a disability, contact your local Family Planning Association.

Reduced self-esteem and self-confidence, and decreased social skills, can affect a young person’s ability to develop relationships and be accepted by others. In addition, some people with ABI lose the normal inhibitions we place on our behaviour. They may do and say inappropriate things – for example, use sexually explicit language or masturbate in public – and this inevitably affects the way others relate to them. Physical disability following brain injury can affect a young person’s ability to engage in sexual or self-pleasuring activity, and an injury during adolescence – a time when acceptance by peers is so important – can have a devastating effect on self-image and self-esteem. Negotiate risk: sex education & guidance To negotiate these years safely and successfully, all young people need to learn about their sexuality. They need to know how to avoid risks to their health and their social and emotional development, and find positive and healthy ways to express their sexuality. The risks involved in sexual behaviour have changed over time. Unplanned pregnancies have decreased – but the risks of sexually transmitted infections, including HIV/AIDS, are real. Attitudes towards homosexuality are more positive – but young people can still feel shame, guilt and regret about their sexuality. Having information is a good first step. It doesn’t prevent all problems – adolescents aren’t always able to put theory into practice. However, research shows that teenagers who receive appropriate sex education tend to delay first intercourse, use contraception, and avoid pregnancy.

When young people are sexually active Young people with ABI who are sexually active may be at risk because of poor judgement, planning, follow-through, selfawareness and social skills. For example:

Of course, family input is crucial too. Like their peers, young people with ABI need: • Informal education, at all ages, on sex and self care – such as having their questions answered by trusted adults • Formal sex education, such as that provided by schools. Young people with ABI often need extra time to absorb information and learn self-care – for example, managing monthly periods for a young woman. A young person with ABI who thinks concretely may need to practise skills in a variety of specific situations, as it may be very difficult for them to generalise from one situation to others. Young people with ABI are also more likely to need very firm, clear guidelines about what’s appropriate. A degree of tolerance is needed – if they do or say inappropriate things, shaming or punishment often doesn’t help. The issue needs to be dealt with quietly and firmly, without feelings of condemnation. Sometimes a trusted adult or young person outside the immediate family is in a better position to provide information, support and advice.

• They many be less likely to use safe sex methods to prevent infection or unwanted pregnancy • They may be more likely to deny symptoms of infection • If they have an infection, they may delay seeking treatment or not complete a course of treatment, especially if symptoms decrease • They may not inform their sexual partners about any diagnosed infection they have. Even when they see a health professional, diagnosis may not be correct, and relevant health and education issues may not be discussed. This may be because the young person has difficulty communicating or because the health professional is unfamiliar with the effects of ABI. These are difficult issues for parents to address at the same time as respecting their young person’s privacy. You may be able to go with your young person to the doctor, or get a friend to go, or rehearse with the young person what they will say to the doctor. This is an excerpt from a publication published by BrainLink Services Ltd. Brainlink is a statewide Victorian service dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families. Ring 1800 677 579 or visit

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Alcohol & other drugs Like adults, young people drink and use drugs for many reasons, both positive (to feel good) and negative (to escape problems) Alcohol and other drugs are often readily available to adolescents. All families can find the situation challenging, but for the young person with an Acquired Brain Injury (ABI), the issues are often more complex. In general, drugs and alcohol are riskier for someone with ABI than for other young people: • Alcohol and drugs can dramatically affect someone with ABI – considerably more than someone without an ABI – and this increases the risk of an accident or police attention • Alcohol and drug use after a brain injury also carries a greater risk of causing further brain damage, or triggering seizures • Some young people with ABI drink or use drugs to mask painful experiences or cope with stress, so frequent heavy drinking may be an indicator of other problems

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• ABI often affects the skills that are needed to use drugs and alcohol sensibly and safely – motivation, insight, memory, organisation and planning • The desire to have friends and fit in may make a young person with ABI more vulnerable to peer group pressure • Alcohol can also interfere with many medications, especially anti-epileptic drugs which are commonly taken after a head injury. Should I try to prevent my child from using drugs and alcohol? For some parents or carers, ‘no’ may seem like the most sensible message. Other parents assume they can’t – or shouldn’t – prevent experimentation with ‘forbidden’ activities and they therefore aim to reduce the chance of harm to the young person. Forbidding use can sometimes have the

opposite effect of what is intended. It may be more constructive to set clear limits – for example, one can of beer at a party – rather than saying ‘no alcohol’. Carrying out any plan – whether it involves saying no to drugs or using them safely – may be difficult if a young person has problems with self-control, judgement and decision making, or difficulty understanding information, anticipating problems, and following through a plan of action. If self-control is difficult, it may be best to focus on controlling exposure to drugs and alcohol. This means setting clear limits and keeping some control over the young person’s social environment. It may help to discuss this with a professional who understands both ABI and substance use; or, if not available, someone with expertise in youth substance use, and make

sure they understand the issues relating to your child’s ABI.

use, and ensure they understand the issues relating to your child’s ABI.

Above all, you should, as a family, choose the approach that suits your own style, values and circumstances.

For some young people, drug use can become a serious and debilitating problem, but most who experiment with drugs grow out of it with little or no long-term damage. Drug use is a reason for concern, but not for panic.

Can my child learn to be responsible about alcohol and drugs? For almost all young people with ABI, the short answer is ‘yes’ – given an approach tailored to the young person’s particular abilities and problems. Parents often find it valuable to talk with a professional about this. A professional can assess your child’s strengths and problems, and work with you to develop and carry out a program to teach the skills needed. The following broad guidelines may also help: • Be responsible yourself in your use of alcohol and drugs, and talk about responsible use • Teach your young person ways to resist peer pressure e.g. always carry a full glass at a party, or fill your own glass with soft drink • Drop off and pick up the young person from parties, or pay for a cab fare home • Don’t say ‘no’ to everything, as this may push young people towards problem behaviour • Young people with ABI may also need firm and clear rules about what’s acceptable and safe. How can I tell if my child is using drugs or alcohol? It’s not always easy. The effects of ABI can look like intoxication, and other so-called ‘warning signs’ can be similar to the effects of ABI, such as: • disregard for others • a drop in school performance • slurred speech • emotional outbursts and rapid mood swings • memory problems • being withdrawn, difficult and secretive. It can be difficult to decide whether these are simply part of the ABI, or a sign of problems with alcohol or other drugs. Your best guide as a parent is probably your own knowledge of your child and your gut feeling. What if I think my child really does have a problem? Young people seldom tell their parents about a drug or alcohol problem, either spontaneously or when asked directly. Someone with experience of ABI, young people and substance use can provide useful guidance. Otherwise, find someone with experience in young people and substance

If your child with ABI needs professional assistance, you may have to support him or her in seeking this. Difficulties with shortterm memory, organisation and planning can prevent young people from taking the initiative themselves. Ideally, find someone who is knowledgeable about both ABI and drug issues. In reality, you may need to talk to, and bring together, an ABI specialist and a person who is knowledgeable about drug and alcohol issues. The following points may also help: • Try to keep channels of communication open – be ready to talk and listen in a supportive, non-judgmental way • Take a problem-solving approach, possibly with outside expert advice • Be clear about how you and your family approach the issue, and deliver a clear, consistent message • Discipline needs to be rational and sensible – don’t start something you can’t carry through (e.g. threatened punishments), but set firm limits on what you will and won’t do • Do whatever you can to make sure your child is safe, even when he or she is doing something you don’t approve of • Consider talking with someone at the school – maybe your child’s teacher, the year level coordinator, the school nurse, the school counsellor – bearing in mind any confidentiality issues for your child, as a school with a positive and preventive approach to drug-related issues can be very supportive and helpful • Provide your child with opportunities for being involved in community activities in a positive way e.g. in sports teams or youth groups • Do things together with your child as a family, and show an active interest in his or her activities and notice achievements • Find out what you can about drugs and the actual risks involved, and contact your Brain Injury Association for organisations offering useful advice, information and services in relation to alcohol and other drugs. This is an excerpt from a publication published by BrainLink Services Ltd, a statewide Victorian service dedicated to improving the quality of life of people affected by conditions of the brain. For more information you can ring 1800 677 579 or visit

Second brain injury is worse! Did you know that once you have acquired a brain injury, your brain is even more likely to be injured next time? This is especially the case if it occurs within 24 hours of the first injury, and can easily be lifethreatening in those situations. It’s a very good argument for doing everything you can to reduce the risk of more trauma to your head with strategies such as: • always wearing helmets for sporting activities • non-slip surfaces and hand rails in the bathroom • buy a car with airbags and always wear seat belts • remove tripping hazards from the floor.

Trouble with concentrating? After a brain injury you may be easily distracted, have trouble keeping track of conversations or doing more than one task at a time and be slower at taking things in. This difficulty with concentration affects your ability to learn and leads to fatigue, confusion, frustration and anger. The following strategies may be helpful: • Reduce all possible distractions • Take regular rest breaks • Meditation, deep breathing and other relaxation strategies • Talking to friends • Use a simple step-by-step approach to tasks • Write information down using notes kept in specific places • Tape messages that can be regularly played back • Use a white board to organise, plan and store information • Get into a regular daily routine which has a structure • Schedule demanding tasks when levels of energy and alertness are greatest • Eat a healthy diet and sleep well • Use self-talk to monitor thoughts and actions • Break significant tasks down into small and achievable steps • Use a timer or electronic organiser. These won’t work for everyone. Find the ones that do work and remember to reward yourself for improvements and accepting the days that don’t go so well!

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008 - Bridge Magazine - Children and Adolescents (2012)  

008 - Bridge Magazine - Children and Adolescents (2012)