001 - Bridge Magazine - Rebuilding Connections (2010)

VOL-1

In this issue: REBUILDING CONNECTIONS social & recreation options support groups assistive technology rebuilding social skills

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Social & recreational options BRIDGE VOLUME 1 - January 2011 ISSN 1448-9856 General Editor: Marketing Manager: Contributing editors:

Barry Morris Glen Farlow Clare Humphries Anna Petrou

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Synapse PO Box 3356 South Brisbane Q 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: info@synapse.org.au W: synapse.org.au 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.

My partner has a brain injury Common relational issues for couples

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VISUAL DIFFICULTIES: For those with visual problems, go to www.synapse.org.au 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. The Association 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.

Great ideas to start reconnecting with people after a brain injury

Assistive technology

Cool gadgets to maximise your ability to live independently

Supported by financial assistance from

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INDEX 03 06 07 09 10 11 13 15 17 19 21 22 23 24 26 27 29 1 / BRIDGE MAGAZINE

Social & recreational options Supporting children & grandchildren My partner has a brain injury Impaired self-awareness Information for employers Never give up!

Independent living - assistive technology Losing friends Disability-oriented technology Strength in numbers Aboriginal Islander disability network Communication Now & then Ear exercises Rebuilding our social skills Self-centredness In memoriam - Dr David Charles-Edwards

Handy ways to rebuild those connections Coping tips if a parent has a disability Relationships are tough enough already Tips on a tricky cognitive deficit Fact sheet from CRS Australia Inspiring personal story on recovery Cool gadgets to minimise the support needed Personal story on the pain of losing friends Phones & gadgets to make life easier All about support groups & how to start one Queensland-based Indigenous group Personal story by Trevor Short All about our name & logo changes lately Relearn those important listening skills Practical strategies to reconnect with people Relearning how to care about others In memory of one of our earliest supporters

bridging THE GAP

Jennifer Cullen CEO of Synapse

What happened to the front cover?!

It’s not just the front cover, we’ve changed the name too. In fact there has been a lot of change around here recently.

The name of this magazine is no longer Synapse, but has been changed to Bridge. We believe the information and stories we share provide a bridge between the former life readers knew before a brain injury, and the new life they create for themselves.

And what of the name Synapse? As an organisation, we’ve changed our name from the Brain Injury Association of Queensland to Synapse. Why? A synapse is the connection between neurons in the brain that allows us to move, speak, dream and achieve goals. Connections are everything, and we hope to build connections for people so that they may reconnect with families and the community.

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So the central theme of this edition is how we can rebuild these connections by working on social skills, joining support groups, and using assistive technology to improve our access to the community. It is the connections we make that provide so much meaning to our lives, and their importance cannot be overestimated.

On a practical level, we have experienced an exponential increase in the demand for accommodation, lifestyle support and training services. Changing our name to Synapse will help us become more eligible for the range of grants on offer, and we can then continue to provide free information, advice, publications and other services.

Synapse serves the needs of those living with Acquired Brain Injury, but also people with behaviours that challenge community

understanding. The term ‘brain injury’ refers to only a part of what we do — but it is not less important. We take our role very seriously, and will continue to into the future.

Although our name has changed, our organisation, people and processes will stay the same. Our mission and values remain the same. We will continue to serve as the peak disability organisation in Queensland providing specialist services to people living with Acquired Brain Injury, or behaviours that challenge our understanding. We hope these changes will benefit everyone in the long term, and we welcome any feedback you have on how we can improve our services, and therefore the lives of everyone affected by Acquired Brain Injury. ◗ ◗

Synapse is funded by Home and Community AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS Care, a joint Commonwealth and State/ QLD Brain Injury Association of Qld Tel: 07 3367 1049 Email: biaq@braininjury.org.au Web: www.braininjury.org.au Territory program providing funding and QLD Brain Injury Association of Qld Tel: 07 3367 1049 Email: biaq@braininjury.org.au Web: www.braininjury.org.au assistance for Australians in need.

AUS Brain Injury Australia Tel: 02 9591 1094 Email: admin@braininjuryaustralia.org.au Web: www.braininjuryaustralia.org.au AUS Brain Injury Australia Tel: 02 9591 1094 Email: admin@braininjuryaustralia.org.au Web: www.braininjuryaustralia.org.au NSW Brain Injury Association of NSW Tel: 02 9868 5261 Email: mail@biansw.org.au Web: www.biansw.org.au NSW Brain Injury Association of NSW Tel: 02 9868 5261 Email: mail@biansw.org.au Web: www.biansw.org.au VIC BrainLink Services Tel: 03 9845 2950 Email: admin@brainlink.org.au Web: www.brainlink.org.au VIC BrainLink Services Tel: 03 9845 2950 Email: admin@brainlink.org.au Web: www.brainlink.org.au TAS Brain Injury Association of Tasmania Tel: 03 6278 7299 Email: enquiries@biat.org.au Web: www.biat.org.au TAS BrainSAInjury Brain Association Tasmania Tel: 03 6278Tel:7299 7600 Email: Web: www.biat.org.au Injury of Network of South Australia 08 8217 enquiries@biat.org.au Email: info@binsa.org Web: www.binsa.org SA BrainNTInjury Somerville Network ofCommunity South Australia 4100 Email: Web: www.binsa.org Services Tel: 08 8217Tel:7600 08 8920 info@binsa.org Email: scs@somerville.org.au Web: www.somerville.org.au NT Somerville Community Services Tel: 08 8920 4100 Email: scs@somerville.org.au Web: www.somerville.org.au 2 / BRIDGE MAGAZINE

Social & recreational options One of the most frustrating aspects of a brain injury is that it can leave you at home with little social contact, support or activities . . .

The first two years after a brain injury are usually busy with the process of recovering, and social activities usually take a back seat to rehabilitation. But in the long run, the loss of friends, employment opportunities and meaningful activities is one of the most difficult ongoing problems.

In this article are suggestions for getting more out of life despite the difficulties and restrictions a brain injury may present. Even if you are very motivated, it is suggested that you check with your rehabilitation specialists or family to get a realistic idea of your capabilities and limitations at this stage of your recovery. A common problem after a brain injury is feeling you have recovered more than you actually have. Don’t set yourself up for failure by starting something too ambitious!

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why are there so few services?

A major issue is the lack of brain injuryspecific support groups and social activities. In fact, even Brain Injury Associations rarely run these programs. Why? Anyone familiar with brain injury will know how seriously it can affect social skills, personality, behaviour and emotions. Successful social groups for people with a brain injury usually require an almost one-to-one ratio between specially trained group coordinators and group attendees to facilitate social skills and intervene when behaviours that challenge our understanding occur. Given the constant lack of funding for brain injury associations, scarce resources are almost always channelled to other areas where limited funds and staff can make a difference.

Sadly, this means that people with a brain injury need to usually look at generic services, or those tailored for people with an intellectual disability or mental illness.

Contact your local Brain Injury Association to see what support groups or social activities may be available in your area. If none of these are specific to brain injury, the following suggestions may be worthwhile chasing.

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It is crucial to choose activities that are appropriate for the level of recovery achieved, so: • choose activities that are achievable and won’t lead to failure and disappointment • ensure that social skills needed are not too complex for a given social group • remember inappropriate or challenging behaviours won’t be tolerated.

If you are still in a rehabilitation program it’s a great idea to discuss social and recreation options with your specialist. Otherwise ring your Brain Injury Association and discuss what sort of activities might be best. hobbies & social groups A hobby is a great place to start. TAFE colleges often run Adult Education Courses which may run for a few hours each week over a month or two. They often cover a wide range of fun activities such as art and crafts, boating, job skills, computers, cooking, languages, relaxation interior decoration, photography, sports and creative writing. The courses are reasonably priced (usually with discounts for healthcare card holders), and details can be obtained by ringing your local TAFE college. If there isn’t a TAFE college in your area, see if there is a community centre that can advise you on activities, or look for noticeboards at your local library or shops.

There may be social clubs set up to cater for people with physical or cognitive disabilities.

The problem here is that groups like the Sporting Wheelies (see next section) cater for physical disabilities, so people there will have little awareness or understanding of cognitive disabilities. On the other hand, there are many social groups set up for people with psychiatric disabilities or a mental illness, but these are very different to the issues faced by someone with a brain injury.

Of course you can also look at social groups or activities that aren’t based around any disability.

Sport & exercise There is plenty of research showing that exercise is great for not only our overall health, but mental health and happiness too. You

don’t have to be young and energetic either — exercise can range from the gentle art of Tai Chi or yoga through to martial arts and marathon running. It’s very important to wear a helmet in activities like cycling where you might hit your head. Your brain becomes much more vulnerable to further injury once you have a brain injury!

If you have never played a sport before, sometimes TAFE courses have beginner classes in activities like volleyball, and you can form an ongoing team once the course finishes. Here is a sample of sports and activities worth looking at: • cycling • bush walking • running • team sports (football, volleyball etc) • tennis • swimming. online support groups The Internet has been a blessing for support groups, and particularly for people who live in isolated areas, do not have time to attend a group, or prefer the anonymity and lack of social pressure from meeting face-to-face. Some places to start are: • http://groups.google.com/ • http://groups.yahoo.com/ • Forums and discussion groups on various brain injury websites (e.g. www.tbichat.org).

There are many groups available, but the quality varies. A good online group usually has members who have been around for years, who are now sharing their hard-won knowledge and experience with newcomers to a brain injury. Better groups also have a moderator who ensures group discussions observe established guidelines and rules.

Always be careful when interacting online with others! There are plenty of scammers who target people with cognitive disabilities for identity theft, pleading for money and all sorts of devious schemes. It is advisable to always be cautious, and never to give someone your personal details. If in doubt, discuss any issues with a trusted friend or family member.

brain injury support groups These are usually very hard to find.

Unfortunately, a brain injury often results in difficulties with social skills, anger management, concentration, and ability to empathise with others. These are all vital ingredients to a successful group, so several group facilitators are usually needed to manage issues that arise.

As mentioned, most Brain Injury Associations will not have the funding, time, or possibly the expertise, to provide this input.

Can a person with a brain injury start a support group? Leading a support group usually requires excellent social skills, stamina, organisation, concentration and empathy. It can be a tough job for anyone, and it just gets much harder with a brain injury! It would be best to discuss this with your local Brain Injury Association to see if starting a group is feasible.

There are plenty of internet-based resources on how to set up and run your own support group. basic social skills & behaviour Social isolation often occurs because a brain injury can affect our social skills and behaviour.

The most important part of maintaining friendships and building new ones is to work on appropriate behaviour and social skills. To make this even more difficult, a brain injury often affects our self-awareness, which makes it much harder to detect and work on any problems in these areas.

Learn all you can about how a brain injury has affected you. Learn the best strategies for managing problems. Talk with your family members about this — they can help identify issues, and even work through them with you.

Volunteer work For most of us, work is an integral part of self-esteem, and this can be a contributing factor to the depression that is common after a brain injury. Volunteer work can be a great way to slowly work our way back into the workforce, or at least feel a sense of achievement and participation in society.

There is usually a coordinating body in most States offering a wide range of volunteer work which can be an excellent way to develop confidence again and prepare for a return to work in the future.

Even if it is unlikely you will return to work, volunteer work can be of great value. A lasting sense of happiness often arises from giving to others instead of focussing on ourselves, so consider volunteering for a welfare organisation in your area.

Training & study Some form of training or study during recovery can be constructive, particularly if you won’t be able to return to your previous occupation. An accurate assessment of your abilities may be useful, to make sure you can cope with the cognitive demands of study.

Most educational institutions should have a Disabilities Officer who can provide you with support through your course. Being realistic about study may mean entering at a certificate level and only doing one or two subjects a semester.

See if your Brain Injury Association runs courses about brain injury. This can be a great way to develop insight into recovery process, and it should be either free or heavily discounted if you have a brain injury. ◗ ◗

seven hot tips for relearning your social skills

Relearning all the fundamentals of communication is critical to keeping relationships with our family and friends healthy, and establishing new friendships.

These are some of the most important things to watch for after a brain injury.

• Remember to listen and ask questions.

Hogging the conversation and talking about yourself too much will definitely drive people way from you.

• Don’t ask questions that are too personal.

Everyone loves someone who listens well and takes an interest in them, but make sure your questions aren’t too personal (e.g. sexual matters, income level).

• Don’t get stuck on the one topic. Sometimes a brain injury makes us obsessed with a narrow range of topics. Keep it general, and find out what the other person’s interests are, don’t just rave about your own pet topics!

• Don’t stand too close. Often we will stand inside someone’s personal space after acquiring a brain injury. If the other person keeps backing away you are too close!

• Don’t speak too loudly. Sometimes a brain injury can make us talk louder, which others may find unpleasant. Ask your family members to monitor this for you.

• Smile! A smile is like an open invitation for social interaction.

• Get feedback from a family member or trusted friend. It’s easy to be unaware of offending someone with an inappropriate joke, awkward question, unpleasant topic or loud manner. Get feedback on how your social skills are going.

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Supporting children & grandchildren How to help children cope with the illness or disability of a parent or grandparent; communicating with them, 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 can also be a support and comfort to you.

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Keeping Kids in the Dark This is what happens when we keep the truth from children: if they are not given a clear and accurate explanation, children often imagine something far worse than the real situation.

Someone may tell them anyway, or they will gather misconceptions from TV, magazines or other sources.

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.

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.”

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

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.

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”.

Don’t make promises you can’t keep — “Mummy will be fine, I promise”. Reassure 5 / BRIDGE MAGAZINE

young children that nothing they have said, thought or done could cause the illness.

Typical Responses of Children Chronic illness means that parents have less time and attention for their children.

Meanwhile, children are often asked to carry extra responsibilities. All these changes turn a child’s world upside down. There can be great frustration and anger, with the responses to match.

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 supergood and setting unrealistically high standards for themselves.

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.

Some children become clingy, afraid that something bad will happen to their parent when not there.

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, 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 them 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 with the child. Help them to understand that even if grandpa’s face or voice changes, it’s still grandpa underneath. If death is an issue, you need 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 adult’s.

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

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.

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. And 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 we 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 will 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.

But 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 published by BrainLink Services Ltd and available for free download from their website. 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.

Call 1800 677 579 or visit www.brainlink.org.au

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My partner has a brain injury A brain injury can be a devastating experience for spouses and partners. There is no time to adjust gradually to the injury and nothing can prepare people for the changes that occur.

It is common to feel that the Acquired Brain Injury (ABI) is unfair, and that the injury and its consequences are undeserved.

Life plans can disappear in an instant.

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Possible Reactions Partners often experience a range of emotions following an ABI which may include some of the following: • Shock and denial at the immediacy and severity of the injury, and the consequences of changes to your partner • Anger and frustration, wanting to blame someone for the injury. Frustration at the recovery process and changes to your life and the life of your family • Loss and grieving for a lost lifestyle, finances, relationships or changed plans.

• Anxiety or depression. Ongoing low mood and anxiety are common issues reported by partners of people with ABI, and a normal reaction to difficult circumstances, so it is important to recognise the signs and ask for help • Resentment and guilt, wanting to blame someone, feelings of guilt when people blame their partners, not having time for other life responsibilities or relationships.

• Loss of interest in activities that were formerly enjoyed is reported by some partners • Loneliness and isolation, many partners also report the gradual withdrawal of their friends as their lives have now taken different directions with different priorities.

• Mourning and chronic sorrow.

This grieving process cannot be completed for the family of someone with an ABI as the loved one remains with the family, but often as a new and altered person. Family mourn the personality and characteristics that have been lost while learning to relate to a different person. Mourning is never completed, but can begin again with reminders of what has been lost.

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Relationship & Role Changes The occurrence of an ABI may change the relationship between partners and the roles of all family members. Changes that occur cover many areas.

Partners may need to take on a caring role. If this involves basic personal care and cueing with daily living tasks, it may feel like parenting their partner. This can be especially difficult if the ABI has resulted in challenging behaviour. The intimate couple relationship may be difficult to maintain.

ABI in one partner places a strain on many marriages. For some, the ABI may result in changes that are extremely difficult to cope with, leading to thoughts of separation or divorce. In the circumstances, ambivalent feelings of this nature result in guilt at even considering such actions. Seeking counselling may assist.

Effects on intimacy may occur due to personality changes or the confusion of now being carer as well as partner. As well, the person with the ABI may have lost the physical, social and emotional skills necessary to maintain a satisfying caring and sexual relationship.

Having carers or lifestyle support workers coming into the home on a regular basis can place a strain on relationships as family life becomes less private.

Grandparents may need to take on a more practical role with the family. This can ease practical situations but changes relationships and can be another adjustment for the partner to make.

If there are children involved, partners often worry about how the ABI has affected their relationships with their children. Some parents find themselves being more over-protective of their children; some worry that they are neglecting their children and feel their resources (financial, time, emotional) are

stretched in this regard.

Relationships with friends and extended family may also change especially if partners feel that others do not understand the ABI. Many partners find that roles in the family change as a result of their partner sustaining a brain injury.

Partners may have to take on a carer role with their partner, and previously valued roles may change (e.g. giving up work to be a carer, loss of future plans as a couple and as a family).

Partners may need to help educate and support other family members and friends about brain injury.

Practical Consequences of ABI In addition, there may be many practical consequences of the brain injury. Some of the following situations may arise: • Partners may find that they become the major decision-maker within the family, a difficult change if previously decisions were made jointly • Needing to become the carer for a partner with the added demands this involves • Difficulty enjoying previous hobbies and activities, and being able to relax • Less time for social activities and interaction with friends, some of whom may not understand what it means to have an ABI • Responsibility for all household management tasks (e.g. managing the finances, cooking and housework, child care, maintenance) now falls to the uninjured partner • Not being able to consult and discuss important decisions that were previously shared • The need to ask other family members or community services to assist their partner • The effects of the loss of income if the injured person was the primary income earner

• Being unable to meet previous financial commitments such as mortgage repayments, car payments, childcare or children’s school-fees • Needing to provide transport to appointments and recreational activities and attending medical and other appointments with their partner.

At times an ABI will result in challenging behaviour which requires understanding of the reasons for the behaviour and strategies to manage the behaviour. Professional assistance may be required in some cases.

Useful Strategies Obtain information about brain injury to understand the changes that may be expected.

Encourage other family members and friends to do the same.

Involve family (especially children) and friends in hospital visits and rehabilitation stages. Don’t try to do it all.

Attend to financial considerations, and consider options for alternative income sources (e.g. Centrelink, a financial advisor, solicitor, insurance company). A hospital or community health centre social worker could assist with this process.

Maintain as much normality as possible in family daily life and routines. Try to arrange quality time away from the situation with other family members or friends if possible.

Ask family or friends for assistance. Often people are willing to assist, but don’t know what to do. Tell them, or make a list of jobs that would help, e.g. hospital or home visits or outings, meal preparation, some household tasks such as mowing, shopping, transporting to therapy or children to activities etc. You can even organise a roster.

Allow time to deal with the significant changes that usually result from an ABI. Be open to being involved in support groups or professional counselling.

Ways of coping vary. Some find talking/ counselling helps. Others need more active ways of dealing with the changes (e.g. taking up a hobby or leisure activity, meeting with friends).

Look after yourself. Despite the many demands that are part of caring, it is most important for the partner to factor in regular breaks in order to maintain health and manage the stresses of the new role. Respite care may be possible also. ◗ ◗

This article is reprinted with permission from the ABIOS fact sheets available at www.health.qld.gov.au/abios/ WHO IS ABIOS? The Acquired Brain Injury Outreach Service is a specialist community-based rehabilitation service for Queenslanders who have acquired a brain injury. It is located in the Princess Alexandra Hospital Health Service District and is funded by Queensland Health.

The mission of ABIOS is to assist people with Acquired Brain Injury in Queensland, their families, and carers, to achieve an improved quality of life and community integration through increased independence, choice, opportunity and access to appropriate and responsive services.

Contact ABIOS by calling 07 3406 2311 or emailing abios@health.qld.gov.au

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Impaired self-awareness Lack of self-awareness is a common outcome for people with frontal lobe injuries and is related to emotional and personality variables.

People with a brain injury may be unable to recognise disabilities they have, even when they are obvious to everyone else.

In other cases, they may not realise the extent of a disability, and believe that everyone is exaggerating these impairments. They may exaggerate their own abilities in terms of social skills or emotional control, and have unrealistic ideas about the future.

This lack of self-awareness is not denial.

Denial involves rejecting knowledge. Where there is lack of self-awareness, there is no knowledge to reject — the person is, due to their brain injury, simply incapable of understanding the true state of things.

Not surprisingly this inability to recognise deficits causes many problems for rehabilitation.

The need for rehabilitation services will be questioned, and there is often a complete lack of understanding of how cognitive problems impact upon their relationships with family and friends. People with a lack of self-awareness may return to work but not understand why they fail in the workplace. They are unable to set achievable goals at work or evaluate their own performance realistically. Understandably this can affect one’s vocational confidence.

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3 types of awareness impairment Impaired intellectual awareness is where a person is unable to understand that a deficit exists. The second type is impaired emergent awareness, where a person knows there is a problem but is unable to realise when the problem is occurring, or to compensate for the deficits. The third type is impaired anticipatory 9 / BRIDGE MAGAZINE

awareness, where the person is aware of the deficit, can recognise when the problem is occurring, but is unable to anticipate the likely situations in which the problem will crop up.

The family takes the brunt The impact on the family can be immense.

If they confront the family member with ABI there can be an angry reaction. At times the family may try to believe nothing is wrong in their desire to see their loved one get well, even though this could lead to dangerous situations such as driving with a visual impairment.

A family should set specific goals that have to be met before the family member can forego treatment or supervision. Ideally this should happen with the involvement of rehabilitation professionals.

It’s your fault, not mine Another impact on the family is that external causes may be wrongly blamed for problems that develop. Linked with lack of self-awareness can be a refusal to own up to mistakes and blame other people or external causes. A useful strategy is encouraging them to look at situations from an outside viewpoint and analyse what happened. Ideally a problematic situation could be videotaped to aid this process. The hardest part of being blamed for something is to not take it as a personal insult. Arguing will only worsen the situation, so usually it is best to agree to disagree. A common response could be “We both see this from different angles, so let’s leave it there”. If blame is a constant problem the whole family should look at adopting very consistent responses.

Seeking professional help If lack of self-awareness is treated professionally the first step is usually a neuropsychological assessment. This will assess the person’s cognitive strengths and weaknesses, specify the impaired awareness and suggest a treatment plan. Usually the family will be included in this process.

There are various psychotherapeutic techniques used to help increase a person’s self-awareness. The therapist first gains the person’s trust, then gently helps them to see the discrepancy between their perceived level of performance and their actual level of functioning. The next step is normally to help the person anticipate and plan for the problems their deficits may bring about by teaching strategies to deal with them. Treatment methods will vary depending on the type of awareness impairment.

The long road to awareness Lack of awareness can lead to poor recovery for people whose brain injury has resulted in this condition. Family members should be on the lookout for this and seek treatment when required to enhance the quality of life for the family member with brain injury. ◗ ◗ This article is reprinted from Acquired Brain Injury: The Facts, our 62-page guide to living with a brain injury. Pick up a free copy from our office, or visit www.synapse.org.au to order a copy.

Information for employers Workplaces can adopt a range of strategies that enable a person with an Acquired Brain Injury to become or remain productive employees.

Each person’s circumstances are, of course, unique. A person with an Acquired Brain Injury (ABI) may experience changes in one or more of the following: • thinking skills • emotions • physical functioning • communication.

Many people are able to learn ways to compensate for or minimise the impact of these changes in a workplace to successfully return to paid employment.

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Steps that can help people return to work Sometimes even slight modifications to the workplace or workflow can increase productivity. Here are some examples of workplace adjustments that have helped people to get or keep their job: Shane experiences difficulties with learning new tasks, particularly when instructions are verbalised. After discussing this with his employer, Shane was taught new procedures through practical demonstration, with the tasks broken down into steps. Shane was also given time to make notes when he came across new information. Both strategies allowed Shane to successfully learn new tasks in suitable timeframes.

Sarah becomes physically fatigued during the second half of her shift. Her employer has assisted her to restructure her day so that she performs the less demanding tasks while seated later in the day.

Graham returned to work as a kitchenhand after a head injury. He remembered the basics of food preparation but had some visual difficulties which made it hard for him to find the utensils and food items that he needed in storage spaces such as the fridge. Graham’s employer created a consistent storage system and discussed this with Graham’s two co-workers. Initially some labels were necessary to make sure everyone stuck to the same system. Ultimately this enabled not only Graham but also other employees to work slightly faster, and cope with the busy meal times more effectively.

Bob needs to take time off work for hospital appointments but he has used all of his sick leave. Bob’s employer has offered him leave without pay.

Vanessa could perform most of her work duties competently, but had trouble taking phone messages; while concentrating on what the other person was saying she found it hard to write all the relevant information down.

She talked to her employer, who helped her to develop a ‘messages’ template that was specific to the workplace needs. This cut down the amount of information she needed to write while on the phone, and helped her to ensure that she asked customers all the important questions.

How does CRS Australia help in the workplace?

CRS Australia employs professional rehabilitation consultants with skills in assisting people with an ABI to enter the workforce or return to work, and keep their job.

CRS Australia can help employers by ensuring there is an effective job match, that is, finding the right person for the job. We provide people on a rehabilitation program with skills training and we also offer an ‘on-thejob’ training scheme. We negotiate all aspects of the work training with the employer and the jobseeker. We can also assist employers to make adjustments if necessary to enhance work performance. The best person for the job may indeed be someone with an ABI. Employers can contact CRS Australia for assistance if one of their employees is at risk of losing their job because of an injury, health condition or disability.

We stay in touch for three months after the person starts or returns to their job, to help make sure the job is working out well for both employer and employee. CRS Australia also ensures the employer will have continuing support by working closely with the employee’s treating health professionals, family and other support networks. ◗ ◗ This article is adapted from a range of fact sheets with permission from CRS Australia. Visit www.crsaustralia.gov. au to find other useful fact sheets.CRS Australia helps thousands of job seekers find and keep jobs, and works with employers to keep workplaces safe. If you are an employer, CRS Australia can help you find a great candidate for your next vacancy, provide expert workplace safety services and manage your injured worker. If you have a disability, injury or health condition and want to get or keep a job, CRS Australia can help. CRS Australia will work with you to manage the barriers you face in getting a job.

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Never give up!

Sandy’s story is living proof of why everyone should hope and work for the best outcome after a brain injury Flexible, accomplished, hard working, intelligent, fun, capable, practical, considerate, funny, adaptable, committed, determined, easy-going, open-minded, fiery, passionate, fit, healthy and loved. Luckily I had all this going for me before I hit the deck.

The 17th February 2009 is now a date I will never forget.

The day I fell down the stairs in my house at 2 am was the start of one of the toughest journeys in my life. I have travelled the globe, and on each occasion I had an intention for adventure, challenge, learning and memories.

But this journey was different — an accident and a surprise. This was not a journey planned with excitement in my heart, a Lonely Planet in my hands, and a dream in my head.

The only thing I remember of the night of my fall was the noise of the electric shaver as the nurse shaved my head in preparation for what turned out to be the first of about seven brain surgeries.

I was in an induced coma for many weeks after my first set of operations, a time that my family, friends and boyfriend will remember with sadness forever. I have memories of being in the intensive care unit (ICU) — being fed through a tube, the sensation tests done on my left hand, the tubes in my neck because of the tracheotomy. Talking wasn’t an option because of the hole in my throat, so I wrote requests or

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thoughts on a pad with my right hand as my left side did not move.

After the ICU I got moved to the Neuro Ward. Even though I was awake and talking to my friends, family and boyfriend, I didn’t really think I was in hospital or any medical danger.

I knew that I was missing part of my skull, but it hadn’t dawned on me that I was in any sort of medical trouble. I just did what I was told — eat, take drugs etc. I wore adult nappies after the catheter was removed so that solved the toilet worries, as I could not stand or walk.

I seemed to think everything was hilarious; I laughed and laughed, day and night. This lack of realisation kept from getting too close to the whole situation. It was so shocking, I think I just tried to avoid it.

As the days went by I learnt a bit more about what was happening around me, and what it was going to take to achieve what I needed to do.

My family, friends and boyfriend kept up the support. They would say things like: • Just keep going • Try it again • Keep thinking positive • You’ll get better • Soon you’ll be back in action again • Keep dreaming of all the places you still would love to travel to • We’re with you • Everybody is rooting for you.

I thought they were over-reacting as I had not realised the gravity of the situation yet.

I think I was too busy trying to convince them all that: • I was a Qantas pilot ( I am not) • I had at least three Indigenous children born in Melbourne ( I have no children, and never lived in Melbourne) • We were all in Hong Kong (we were not) • George and I were getting married (we are not).

Maybe all the drugs were playing around with my head? I had tremendous headaches, and was on morphine for pain — it was like having a builder constantly hammering a nail into the top of my head. One of the doctors said that the headaches can go on for at least 18 months. I wasn’t fazed by this statement as I just accepted that this was the way the cookie had crumbled. But a statement that did bother me was when my neurosurgeon came to my bedside and said “You shouldn’t be here!” as he thought I was dead. I learnt later that I died in the operating theatre but they were quick and I was lucky. I came back.

The toughest days for me were when the physiotherapists or occupational therapists asked me to move my hand or, horror of horrors, stand and walk! Learning to walk again were the hardest days of my life, as I finally realised that something was wrong. It hit me with force — floods of tears and uncontrollable

sobs. My family, friends and boyfriend were there to urge me to take my first steps in the hospital gym.

I eventually did it, I walked for the first time.

Then started all the thinking — why, what if, if only . . . The laughing stopped and the tears came. 18 months later and I am still drying my eyes, while convincing myself that the sparkle I had in my eyes before this trauma will come back if I keep going and stay strong.

This sort of stress was unforgiving for my family, friends and boyfriend. There was nothing they could do, there was no magic wand. All they could do was listen to my sobs, while trying to put into words feelings that I didn’t even understand myself. It was, and continues to be, a very energy-sapping process for us all.

The day came when BIRU (Brain Injury Rehabilitation Unit) had a spare bed. Even though I was excited I was sick with nerves on the day we had to do the transfer. I have to hand it to them, rehab is their game and they are good at it. My months there were difficult as each session of rehab taught me more about what I couldn’t do.

Once again, my personal support crew were totally behind me. Their repetition of positive thoughts and ideas eventually sunk in, and finally I started to grab those ideas and run with them. It was in BIRU when I started to really use my brain, as daily therapy sessions forced things into my conscious mind.

The most fun I had was when I closed my eyes. I dreamed up stories so clear in my head that I can see them today. I dreamt of my left side moving with ease, sitting at work talking to clients, typing with both hands and talking at the same time, and being sharp and on the ball.

I am a very determined person — the fact that I am goal-orientated did help, but my “I want everything yesterday” attitude didn’t.

Speed is not brain injury rehab’s middle name, stamina is. If I had a dollar for every time I did my required exercises I wouldn’t need salary continuance insurance today. I always knew no matter how hard it got I had to keep at it: • Do it again • Play it again, Sam • One more try • Go another • One for the road • Lucky last.

All this repetition helped to retrain my brain.

I always get a giggle out of how parents have to repeat themselves to kids — well they are also training brains. The delight is that the child does learn, and so did I.

Falls & brain injuries Sandy’s story is a reminder about how dangerous a fall can be. While not specific to a brain injury, these statistics for hospital cases from 2005 to 2006 bear out the risks: • Falls the most common injury for children aged 0–4 years at 39% • Falls were also the most common injury for children aged 5–14 years at 43% • Falls for young adults aged 15–24 years were 12% of hospital admissions • Falls for adults aged 25–44 years were 14% of hospital admissions • Falls for older adults aged 45–64 years were 31% of hospital admissions • Falls for older adults aged 65+ years were about three-quarters • Falls for older adults aged 85+ years were 87% of hospital admissions!

Hospital separations due to injury and poisoning 2005–06, Renate Kreisfeld & James E Harrison, 2010, Australian Institute of Health and Welfare, Canberra, Cat. no. INJCAT 131.

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Independent living with assistive technology

Illness, injury and the march of time are all factors that can impact on a person’s independence. Being unable to complete daily tasks and move around the home or the community safely can be frustrating.

One organisation helping people of all ages to increase their independence and quality of life is LifeTec Queensland through professional advice and information about assistive technology.

◗ Ergonomic mouse

Adapted keyboard

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What is assistive technology?

Assistive technology (AT) is the term used to describe devices, systems or designs, whether modified or customised, that allow an individual to perform a task that they would otherwise be unable to do, or increase the ease and safety with which a task can be performed. The use of AT can be especially beneficial to maintain connections with friends and family, work environments, social activities, community involvement and routine daily tasks.

People using AT can enjoy such benefits as: • Decreased frustration with completing daily tasks • Improved mobility • Increased independence • Prevention of further injuries • Improved participation in routine tasks • Continued and enhanced socialization

• Improved community participation • Return to work Friends and family Changes in hearing and ability to speak clearly are barriers to interactions with family and friends that one may experience after a brain injury. There are many options available to help accommodate for these changes. Commonly used devices include: • Visual alert systems to inform a person that the phone is ringing, the doorbell has been pushed, a baby crying or a smoke / fire alarm has been activated • Phones that have adjustable ring and earpiece volume to accommodate for hearing impairment • Phones with outgoing volume adjustability to accommodate for low speaking volume • Mobile, cordless and standard telephones with big buttons, large and clear numbers or pictures for improved access and usability • Portable sound amplifiers to better hear conversations and other environmental sounds

• Voice amplification aids to be better heard in noisier environments • Speech generating devices for those who have lost the ability to speak or are unclear in their speech.

Work Re-entry to the workplace can often be very challenging after a brain injury. It is important to evaluate the ergonomics of the work setting along with considerations for a person being able to access and use a computer. For those people who are returning to an office based workplace, some AT which may be helpful include: • Ergonomic office chairs to accommodate various heights, weights, sitting positions and postural needs • Height adjustable tables and desks to accommodate for wheelchair access or for people who are required to work in a standing position • Modified or alternative keyboards which can have large keys for those with decreased accuracy; compact keyboards which are useful for one-handed typists and on-screen keyboards for those who require alternate access to typing • Modified or alternative mouse controls include ergonomically shaped mouse, touch pads (similar to laptop style), joystick or trackballs (which decrease the range of shoulder movement required) and head trackers which allow mouse control through a persons head movements • Touch screens / monitors allow a person to have direct access to computer tasks and eliminate the need for any mouse use.

• There is also a range of software available that can allow continued and more efficient use of a computer whilst decreasing the amount of movement required for the person; examples include access enhancement, word prediction and speech recognition software.

Social activities & community After a brain injury, one may experience many changes to their physical capabilities which can result in difficulty walking, transferring and participating in social and community activities. There are many options available to ensure a person can have continued ability to participate in such activities.

• Powerdrive or manual wheelchairs are helpful for those with increased fatigue and pain and also those with restricted movement which prevents independent or safe walking; wheelchairs come in many styles, colours and designs with a range of seating supports which can be customized to suit a persons needs • Mobility scooters are often used by those who require some assistance to mobilise around the community due to fatigue or difficulties with prolonged walking; however most scooters have limited seating supports and may not be suitable for all people

• Wheeled walkers offer additional support for those with reduced balance, the majority of wheeled walkers have a seat which is helpful if you become fatigued whilst walking long distances • There are a number of options for one’s vehicle to be modified to allow a person to travel whilst still in their wheelchair, or to assist with getting the wheelchair in / out of the vehicle • Crutches, canes and walking sticks are suitable for those who need a little extra support and stability, most sticks are adjustable in height and some can be folded up when not in use When considering mobility aids, it is important to seek out professional advice to select the right device to suit your individual needs. Some individuals may be entitled to subsidy funding to assist with the purchase of these devices.

Daily tasks Many daily tasks can become more challenging after a brain injury for a variety of reasons which can include memory loss, change in vision, excessive fatigue, changes in sensation and perception and decreased motor coordination. There are many devices which can assist a person with performing these tasks to maintain or improve independence in one’s daily routine.

Aids to accommodate for memory loss • Portable voice memo recorders which are helpful in recording messages when out in the community or away from home for follow-up later • Message recorders placed around the home with specific recordings for personal reminders or object identification • There are many devices to assist with medication management, including a Webster pack to organise medications, watches with audio and vibration alerts, pill organisers with audio reminder alerts and pocket pill organisers for portable use; some devices may not be suitable to use with all medication so it is important to check with your pharmacist prior to purchasing these devices.

Aids to accommodate for changes in vision • Large-faced clocks and watches and talking alarm clocks and watches which will speak the time and date • A wide range of portable magnifiers with varying strengths which can have lighted options and different mounted options including table top, worn around the neck and hand held • Electronic CCT reading aids which have many features to adjust the text for easier readability: changed font size, background colour, adjust contrast, and text layout

Powerdrive or manual wheelchairs

Digital voice reminder to counter memory loss

Speech generating device

Electronic magnifier for poor vision

Wheelchair-accessible van

14 / B R I D G E M A G A Z I N E

• Large print books and audio books which allow continued participation in recreational reading.

Adapted cutlery for poor coordination

Rolling trolley

Aids to assist with fatigue • People often sit during daily tasks to manage fatigue and to eliminate falls or accidents; it is also important to try to eliminate prolonged carrying of items, or to slide items along benches instead of lifting them • It is important to have proper support in sitting so as not to spend excessive energy in maintaining position which can be accommodated through use of back cushions, arm rests, height adjustable legs and other cushion inserts • A stool used in the kitchen during meal preparation as a perch position to conserve energy during tasks such as chopping vegetables or mixing ingredients • A rolling cart assists to conserve energy by transporting heavier items around the house by pushing them on the cart rather than having to carry them • Shower chair or stool will allow one to sit during hygiene tasks to conserve energy and increase safety in the bathroom environment • Dressing aids such as shoe horns, sock donners, and dressing sticks can make dressing tasks easier and reduce the range of movements required Aids to accommodate for changes in sensation and perception • Labels to help identify items and maintain organisation to keep your environment as simple as possible • Hot water shut down valves and thermastatic mixing valves will prevent hot water over a certain temperature coming from the spouts reducing the risk of scald injuries • Equipment which is designed for single hand use including mounted nail clippers, elastic shoelaces, jar stabilizers for opening and specialized chopping boards with grater mounted and vegetable spikes.

Grooming aids

Universal remote control with big buttons

Aids to accommodate for decreased motor coordination • There are a variety of adapted utensils which allow for improved use with a built-up handle, weighted grip for those with tremors, and bendable shaft to allow for customisation of utensil • To accommodate for difficulty with scooping food onto utensil, there are plates and bowls shaped with high sides and curved ends to allow for easier capture of food.

• There are a wide range of cups designed to allow for safer and easier drinking including cups shaped to eliminate the need to tilt head backward during drinking, cups with dual handles for improved control, and cups with spouts to better control liquid intake • Writing aids include pen/pencil grips to assist with proper finger orientation, weighted pencil sleeve or wrist weights for those who experience tremors, splints to position pen in hand for writing and wide ruled paper to allow for larger writing • Universal remote controls can be set up to control several appliances (i.e. TV, DVD, CD player) in the environment and reduce the need for multiple remotes, and can be found in big button versions for better accuracy • Environmental controls units (home automation systems) are devices that can control various appliances such as telephones, televisions, lights and doors; these systems can be controlled with remotes, be self-activating or programmed via a computer, and can be very simple or very comprehensive and wired throughout the house • Door handle grips which allow for door knob to be turned with less strength required • Hand rails along steps or long walkways and grab bars to aid with transfers, especially in the bathroom and shower help ensure safety and added support in these environments.

Thanks to LifeTec in Queensland for permission to reproduce this article.

about lifetec services in queensland LifeTec is a not-for-profit, non-government Queensland organisation providing professional information and advice on assistive technology. LifeTec assists a wide range of people from all walks of life, including people of any age who wish to remain independent in their homes for as long as possible, as well as family members, children and adults who are living with a disability or supporting a person with a disability.

Services include individual consultations, free community talks, displays and interactive workshops for health professionals. These services are delivered by health professionals from our Brisbane or Townsville Centres, or throughout rural and remote Queensland as we visit each region during the year.

Our health professionals are available six days a week (Monday to Saturday) to assist any caller or visitor.

For more information contact 1300 885 886 (Queensland only), email mail@lifetec.org.au or visit www.lifetec.org.au

independent living centres in other states ACT NSW SA TAS VIC WA

Ph: 02 6205 1900 Ph: 02 9890 0940 Ph: 08 8266 5260 Tel: 03 6334 5899 Tel: 03 9362 6lll Tel:08 93Bl 0600

15 / B R I D G E M A G A Z I N E

Email: ilcact@act.gov.au Email : help@ilcnsw.asn.au Email: ilcsa@dfc.sa.govau Email : ilc@ilctas. asn.au Email : ilc@yooralla.com. au Email : enquiries@ilc.com.au

Website: www.health.act.gov.au/ilc Website: www.ilcnsw.asn.au Website: www.disability.sa.gov.au Website: www. ilctas. asn. au Website: wwwyooralla.com.au Website: www.ilc.com.au

Losing friends

All the latest scientific research confirms what many of us knew already — the main key to happiness is the people we know, such as partners, children, friends, relatives and parents.

We may desire power, sex, status and the latest mobile phone that doubles as a microwave oven, but these do little to provide lasting happiness.

About two years after my head injury, I realised I had lost many of these connections with people, and my level of happiness had dropped accordingly. Why? I was one of the fortunate ones in that I did not have a raging temper that drove people away. I thought I had largely avoided the self-centredness that apparently can arise from a frontal lobe injury. What had happened?

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Bitterness Anger and self-pity were my main reactions for some time. These were so-called friends who I had helped through some major crises in their time. Others I had known for years, and I had assumed the depth of friendship would have ensured they would be around to help me through this horrible experience of learning to live again.

My partner had the answers, although I was not keen to hear them at first. He said much of the problem was my social skills. Apparently I did not listen they way I used to. I tended to rave on now with long rambling sentences about things other people did not find that interesting.

When others talked, it seemed my eyes glazed over after two sentences and I looked bored.

I was quite blunt now and could offend others in subtle ways (“that new outfit looks bad on you, why did you buy it?!”).

Unpleasant feedback These problems were only the tip of the iceberg.

Thankfully, my partner is a sensitive soul, and only gradually revealed the many ways I had changed. Even so, I was angry at him for a long time, thinking he was simply criticising me for the sake of it. However, with time I had to acknowledge he was right, then I would try to deal with that issue before he brought the next one up.

Five years down the track and I still haven’t regained many of those lost friendships. But I am less bitter now. What if the situation was reversed? What if a close friend had completely changed after an accident? What if she was now moody, demanding, never listened to me, rambled on about herself in a confusing way, and had essentially become a different person?

I know I would have hung around for a while as a strong friendship demanded, but eventually I would have given up and concentrated on friendships which had more give-and-take.

And of course this is precisely how my closest friends did react. So it is hypocritical of me to hold bitterness against them for too long.

Any answers?

My support group talks about this stuff a lot.

Most of us agree that the first stage is bitterness against friends who have deserted us. Then there is the long process of realising how much we have changed and how it affected our relationships. The toughest part is usually making the decision to do something about it.

I’ve heard of women who have chosen to stay with self-pity, alcohol to numb the pain, anger against the world or hating themselves. I don’t blame them. Unless you’ve had a brain injury, you simply can’t grasp how demoralising and terrible it can be. It takes a truly heroic effort to lift yourself up and commit to putting your life back together again.

Happy endings?

I’ve got some of the old me back. It’s been bloody hard, but slowly I am relearning how to interact with others again in a way that doesn’t drive them away. There are still days when the constant fatigue gets to me and I fall back into old patterns. I don’t think there is a happy ending as such, but I can choose to keep moving forward, or simply stop and slide backwards. It is a tough journey, but worth striving for. ◗ ◗

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Disability-oriented technology Some manufacturers are (finally!) releasing technology that is easy to use.

Let’s look at some of the ways assistive technology has developed in the electronic side of things, and how it can make our lives easier.

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COMPUTERS Sitting at a desk with a QWERTY keyboard and a mouse remains the dominant way of interacting with a personal computer. Some assistive technology reduces the strain of this way of work through ergonomic accessories with height-adjustable furniture, footrests, wrist rests, arm supports to ensure correct posture, and key guards fit over the keyboard to help prevent unintentional key presses.

Assistive technology also improves the ergonomics of the devices themselves: • Ergonomic keyboards reduce the discomfort and strain of typing • Chorded keyboards have a handful of keys (one per digit per hand) to type by ‘chords’ which produce different letters and keys • Expanded keyboards with larger, more widelyspaced keys • Compact and miniature keyboards • Dvorak and other alternative layouts may

offer more ergonomic layouts of the keys (e.g. there are also variants of Dvorak in which the most common keys are located at either the left or right side of the keyboard).

Input devices may be modified to make them easier to see and understand: • Keyboards with lowercase and/or big keys • Multifunctional keys, such us the PiTech keyboard with only five big keys, which is used with a special software for writing • Large print keyboard with high contrast colors • Large print adhesive keyboard stickers in high contrast colors (such as white on black, black on white, and black on yellow) • Foot-operated mouse.

More ambitiously, and quite crucially, assistive technology can also replace the keyboard and mouse with alternative devices such as the LOMAK keyboard, trackballs, joysticks, graphics tablets, touchpads, touch screens, foot mouse, a microphone with speech recognition software, sip-and-puff input, switch access, and vision-based input devices, such as eye trackers which allow the user to control the mouse with their eyes.

Software can also make input devices easier to use: • Keyboard shortcuts and MouseKeys allow the user to substitute keyboarding for mouse actions, and macro recorders can greatly extend the range and sophistication of keyboard shortcuts • Sticky keys allows characters or commands to be typed without having to hold down a modifier key (Shift, Ctrl, Alt) while pressing a second key • Customization of mouse or mouse alternatives’ responsiveness to movement, double-clicking, and so forth • ToggleKeys is a feature of Microsoft Windows where a high sound is heard when the CAPS LOCK, SCROLL LOCK, or NUM LOCK key is switched on and a low sound is heard when any of those keys are switched off • Customization of pointer appearance, such as size, color and shape • Predictive text • Spell checkers and grammar checkers. ◗ ◗

GPS devices for wanderers or the easily lost People with dementia can wander and easily become lost. A range of bracelets, watches and other devices with GPS (global positioning system) are available that can track someone who has gone missing. Examples include eMedTrac, eNeighbour, the Find-Me Watch, LoJack SafetyNet and Omnilink.

After a brain injury, some people find they have topographic disorientation, where they

17 / B R I D G E M A G A Z I N E

cannot recognise or remember locations, routes and markers we normally use to navigate around our community or wider areas. This can be a very big problem, as in serious cases a person may not be able to get home even after just walking around the corner. There are now many handheld GPS units that may be useful if the user can use the interface successfully.

phone I can live with.”

iNO Mobile phone

‘My new iNO Mobile phone is so easy to

and free protection case, and is unlocked for Another feature is the SOS button located anybecause network so it can usedaanywhere on the back of the phone. single prolonged use.

It’sAuser-friendly it be has big in the world. Synapse readers can purchase the press of this button will automatically dial button numbers phone to for read $119 including postage — just out to the emergencykeypad 000 numberwith or, the easy mention this article.

For more user can store up to four emergency contact and comes with many other smart options.’information call 0403 111 179 or visit www.fsight.com.au numbers.

The iNO CP09 phone is made in Singapore, comes with a 2 year warranty

The biggest advantage of this phone is the big buttons on the keypad, which are very easy to use if the user has problems with eyesight, dexterity or confusion with multiple buttons. It has other handy features like an LED torch and FM radio but these controls are located away from the keypad to keep the using the phone as easy as possible.

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Doo phone

For more information please call 02 8985 7306 or visit www.fsight.com.au The Doo Phone is a simplified mobile phone interface that has been designed with the following three issues in mind; intellectual

IT’ S S IMP LY EASY.

Large on-screen call disability, impaired dexterity or visual impairment.

MOCK-UP #1: GETTY IMAGES #78054677 FONTS: GOTHAM BOOK, MEDIUM & BOLD and end buttons For people with a disability, dialling is very simple and vital Nine picture-based speed dial options per page Easy menu and large format dial options

Scroll buttons to display more pages of contacts

contacts cannot be easily deleted. The Doo Phone can be set up to say the names of all contacts as they are selected. There are also screen covers available that will help feel where the selection areas are on the screen.

For carers, admin functions on the phone’s interface is protected by a pin code. You will also have full control over what is displayed in the phone’s menu. If you need to, the contacts on the phone can be accessed remotely through the secure internet Doo Phone Web site. In here you can edit the contacts and update them on the phone from your computer at the touch of a button.

If you are buying this phone for someone who travels independently but who might get lost and have trouble communicating their location. The Doo Phone can be tracked using the secure doophone. com site. This application can also be very helpful if you are looking to teach the person using the phone to travel using public transport as you can watch over them from a remote location.

Visit the website at http://doophone.com

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Strength in numbers Support groups are a great way to get support and reconnect with people after a brain injury.

A support group offers the opportunity to share information and to support one another in an environment of empathy and understanding. Difficulties and emotions can be discussed freely without judgment, and new friendships can be forged. This is important, as social isolation often sets in for people after a brain injury, and also for family members who care for them.

People who are new to the many issues raised by a brain injury can learn many things from families who have spent years learning how to cope and survive.

◗

community for a brain injury support group.

Your Brain Injury Association may know of people in your area, and be able to advise their members of a potential group, or mention this in their newsletter. People in need of support may travel relatively long distances to participate in a group, so do not limit your exploration to just your own neighborhood.

Potential members may also be interested in helping you get the group started too, so be prepared to share the responsibility. Schedule a planning meeting to determine what needs to be done, and who is responsible for each step.

what about online support?

The Internet has been a boon for support groups, and particularly for people who live in isolated areas, do not have time to attend a group, or prefer the anonymity and lack of social pressure from meeting face-to-face. The best places to look are: • Google Groups at http://groups.google.com/ • Yahoo Groups at http://groups.yahoo.com/ • Forums and discussion groups on various brain injury websites.

There are many groups available, but the quality varies. A good online group usually has members who have been around for years, and are now sharing with their hard-won knowledge and experience with newcomers to aquired brain injury. Better groups also have a moderator who ensures group discussions observe established guidelines and rules.

where will the group meet?

Assume your group will grow, so look for a large enough facility or organisation that will offer free meeting space with wheelchair accessibility that is easy to find. Some will even provide refreshments. Many hospitals welcome groups that benefit the communities they serve. Try local churches or civic organisations. Don’t be discouraged if they aren’t interested!

How do I find a support group?

If you prefer support groups that meet in person, start with the Brain Injury Association in your State. If they don’t run groups, they should have lists of any that are in your area.

Remember that members’ schedules and attendance may vary. It is wise to attend a support group several times to determine its usefulness to you.

What if no groups are available?

It may be worth starting your own group. This take effort and determination, but it can be a very rewarding experience that will benefit all who participate in the forming of a local group.

Does my area need a support group? If so, how do I start one?

The first step is seeing if there is a need in your 19 / B R I D G E M A G A Z I N E

how do we publicise the group?

See if your Brain Injury Association can help by mentioning your group in their newsletters, or contacting their members in your area.

Contact the media in your town, and surrounding areas too. Try newspapers, radio, and television for inclusion in their public service or community events announcements.

Try a press release. Contact journalists in charge of health reporting and give them facts about brain injury and the details of your group. Notify professionals in your area such as doctors, therapists, nursing agencies and health and human service providers and organisations.

Do not be disappointed by low numbers initially. Two people is the basis for building a support group. arranging the first meeting Start a mail, email and phone contact list that you can add to as you receive calls from those who are interested. Details wanted include: • Name: • Address: • Email: • Home phone: • Mobile phone: • Preferred day and time for group:

• Is the caller a person with a brain injury, family member, professional?

• Do they want to help organise the group? y/n Planning and scheduling the first meeting: How do I contact people?

You’ve now got a complete contact list so you can arrange your first meeting. Schedule a mutually agreeable date and time with the organisation providing the facilities. Try to avoid times where traffic and other issues could keep people from attending.

Send a notice to interested people, including: • Meeting time and location • Address and name of the building • Phone number • Details of speaker scheduled, and the topic.

A follow up phone call can be useful to encourage participation.

Contact the local news media and request that the meeting be included in their community calendar or upcoming events listing. how to run the first meeting Here is a suggested meeting checklist: • Location: • Date and time : • Media notified • Reminder cards mailed • Phone contacts made • Refreshments arranged • Speaker confirmed (if applicable) • Speaker’s name and contact:

• Meeting materials prepared • Name tags • Box of tissues for emotional moments • Note cards • Pens and paper • Handouts and other program materials.

It should be an informational meeting that lets everyone introduce themselves, and explores the needs of the participants. Take notes and listen carefully to all ideas and issues discussed.

As the group develops, encourage ownership of the group by the members by assigning them responsibilities. As the primary organiser, be prepared to lead and facilitate the meeting.

The following tips are helpful when organising the group: • arrive and prepare early so you are relaxed • place handouts on the chairs

i’ve got a brain injury, should i start my own group?

• ask people to sign the sign-in sheet and give them name tages • allow 10 to 15 minutes for arrivals • open the meeting by introducing yourself to the group and giving a brief personal overview • ask that the information shared within the group be treated as confidential • invite everyone to briefly share their story, but only if they feel comfortable doing so • discuss group goals, the style of the group, and topics to be discussed • allow time for socialising at the meeting’s end • ensure everyone has your contact details, and they have signed the sign-in sheet.

• give the group the date, time and location for the next meeting (if one has been planned).

How do we keep the group going?

Starting a group takes effort, so does keeping it going! As long as two people attend, you have a support group.

• Keep the date, time and place consistent • Plan meetings well in advance and notify group members and the local media early • Encourage group participants to decide on speakers and program content.

• Share responsibility for preparations, refreshments and planning other activities.

Be prepared for some people to become emotional, and allow time for them to regain their composure.

There is often a tendency for more extroverted group members to dominate discussions, and introverted members to feel they don’t get a hearing. Ensure everyone gets to talk without

getting anyone’s feathers ruffled!

Stay alert to everyone’s needs, and if needed check with everyone regularly that the group is meeting their needs. The group will evolve and may become quite different to what you had planned, so be flexible. how do we find sponsors?

Even a small support group has its running costs. Examples of sponsors include hospitals, human service providers, health organisations, and civic clubs. Ask for donated services as well as cash donations.

Make a list of the expense items and match each one to a list of businesses and organisations within your community. Give them a written description of your support group and its goals, along with a request for the specific items or services. Examples include: • Churches or businesses may offer the use of copy machines and can include support group mail-outs in their postage budgets.

• Grocery stores can donate refreshments • Local physicians, medical personnel and community organisations can participate by donating relevant literature • Businesses can be asked to assist by sponsoring special outings or sponsoring events that the group can attend.

• Local entertainment, such as cinemas and sport teams may provide free admission. the future of your group?

If you have put the basics of this guide into action, you now have a functioning support group within your community. As your efforts

Can a person with a brain injury start a support group? Leading a support group usually requires excellent social skills, stamina, organisation, concentration and empathy — unfortunately a brain injury often affects these skills. A common problem after a brain injury is being too optimistic about how well you can cope with things, and running a brain injury support group can be very demanding. It would be best to discuss this with your local Brain Injury Association and/or family to see if starting a group is feasible. Try asking someone to assist you with starting the group instead of doing it alone.

Why are there so few groups for people with a brain injury? These are usually very hard to find. One of the problems with these groups is that the members will all be struggling with many problems, which may include poor social skills, anger management, poor concentration, and an inability to empathise with others. Anger, resentment, conflict and even violence can crop up frequently, and usually the only way to run a group successfully is to have an equal number of skilled group facilitators. The vast majority of Brain Injury Associations will not have the funding, time, or staff with appropriate training, to provide this input, and so they usually direct their scarce funding into areas that will benefit a greater number of people. reach others, and your group grows, it is important to remember the principle reason for the support group; it’s the opportunity to share information and to support one another in an environment of empathy and understanding. ◗◗

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BRISBANE CARERS GROUP

Caring for someone living with an acquired brain injury, or know someone who does? Do you live in the greater Brisbane area? Then join our group!

Aboriginal & Islander Disability Network

For almost 10 years Synapse (formerly the Brain Injury Association of Queensland) has been supporting carers and their families by offering services in the areas of supported accommodation, lifestyle support, community response and training. We are dedicated to reconnecting the lives of those people affected by Acquired Brain Injury (ABI), including families and their support networks. The Brisbane Carers Group began as a result of the need to support carers and to help reconnect them with others. Caring for a loved one is a full-time job and it helps to have support.

Synapse offers this free monthly get-together for anyone in a carer’s role.

The Brisbane Carer’s Group will provide each carer with the right support, information and an outlet for sharing.

For too long the cultural and social needs of Aboriginal and Torres Strait Islander people with disability have not been acknowledged.

We are now taking steps to address these issues. Whilst our main aim is to connect with Aboriginal and Torres Strait Islander people with disability, we welcome families, carers and organisations as allies in our work.

Our Network began in 2005 with a few committed people. One of these was Willie Prince who is still the convenor of the Network.

Last year we received funding for a year and employed another one of the Network’s founders, Byron Albury, to facilitate the Network.

Our hope for the next year is to find and encourage more Aboriginal and Torres Strait Islander people with disability and their families to join the Network. We want indigenous people with a disability to have a place where they feel safe and can raise their concerns. We are holding yarning circles around the state to hear what people have to say. We have already held one in Sunshine Coast and our next one is in Brisbane in December 16. We then plan to hold others in regional locations like Rockhampton and Far North Queensland.

We also plan to report back to government some of the stories and issues people tell us. We want to obtain ongoing funding to continue to ensure our voice is heard. One of our members, Doug, highlights some of the issues we face.

Doug was born with Cerebral Palsy.

“Mum couldn’t look after me so when I was a few months old her mum took me Townsville to live at Cootharinga, a nursing home for

◗ HOW DOES IT WORK? The Brisbane Carers Group brings together carers under the guidance of a facilitator who is experienced in supporting carers. Our current facilitator is Kellie Sentinella who is a Synapse Community Response officer with several years experience in the disability sector and a Psychology background. Often other carers or workers are invited to present information and training.

WHY JOIN OUR GROUP? You can meet others in a similar position as you, have a break, get information and get support from others who know what your situation is like. You can: • share and express feelings, thoughts and concerns • listen to others without feeling obligated to participate • make new friends that have been, or are going though, similar experiences • gather additional knowledge on other services, programs or issues • enjoy a coffee and cake!

If you would like to join, or find out more information about this service, please contact Kellie Sentinella or Clare Humphries on 3137 7400.

You can also rsvp online at: www.synapse.org.au/brisbane-carers-group ◗ ◗ 21 / B R I D G E M A G A Z I N E

children. Quite a few Aboriginal and Torres Islander kids lived there”.

Being part of the Aboriginal and Islander Disability Network is important to Doug and he hopes it continues to grow. Through the network he is meeting more people and he has found a place to share his story. He has some ideas about what needs to happen in the future to improve the lives of Aboriginal and Torres Strait Islander people with disability.

“I would like to encourage Aboriginal and Torres Strait Islander people to work with us more. Often Aboriginal people are not recognized in services and also in their own community… …we all need to look at things from everyone’s perspective.”

“I’ve always kept to myself but I’ve done what I want to do even though I am in wheelchair. I am not going to give up.”

There are some things the Network can’t do, like provide services e.g. respite, equipment, support or undertake advocacy campaigns for individuals or groups. However we can begin to let people and organisations know what is needed and we can begin to educate more people, including our indigenous brothers and sisters, what it is like to be Aboriginal and Torres Strait Islander and have a disability.

If you are interested in finding out more or coming to a Yarning Circle please contact Byron Albury, Network Facilitator on 07 3252 8566, 0428 628 308, Free call 1300 363 783 or atsidnq@qdn.org.au ◗ ◗

Communication

Trevor Short explains the communication issues he has faced after a brain injury.

The brain-damaged mind is apparently here to stay for at least a while longer; otherwise I would not be doing things like going round in circles when talking, harping on a subject, and raising arguments and objections to see if the other party can prove their point. This must be very frustrating for people involved as they can only argue one point or present one piece of proof at a time to me, allowing the damaged brain to handle the information. My mind frequently goes into a loop which turns into a downward spiral.

Words come into my mind, and I have to check the spelling and meaning, the ultimate downer when people used to call me a walking encyclopaedia (it took me a couple of minutes to spell that in my mind and two attempts to type it correctly).

Problem-solving was my forte before the crunch.

This ability is starting to return seemingly at random and of its own volition in a way that pisses me off if it’s not there when I need it.

Being sometimes unable to handle ordinary, everyday, simple things is bad enough without the mind throwing in a glimpse of what I should be able to do.

◗

Trying to answer simple questions It is very easy to answer the question; “Do you want to go to the beach”?

It becomes nasty when the simple “Yes” is followed with “Would you rather go before or after lunch”?

That opens the whole can of worms full of questions. Do you mean have lunch there? Do you mean take lunch or buy lunch”? What time constitutes ‘before lunch’?

The worst thing possible would be ask an apparently simple preferential question, without establishing any parameters, and demand an immediate answer. This would be especially so if the demand for an answer appears to be disparaging. Abuse is the only response that comes to mind.

For example; “Do you want to go to the beach before or after lunch? Why won’t you answer me?

It is a very simple question. You don’t have to think about it, just give me an answer — now!” why i give blank looks I am reading this a week later, and some understanding seems to have kicked in. There is often a reason for the blank look that others mistake for inattention or switched off brain.

For example, the blank look can be an indication that the brain is fully occupied in processing the thought or understanding which has been triggered by the other person. It can actually mean that the message has been received and is in the process of being understood.

People tend to keep talking in an attempt to ‘get through’ to someone who appears to have switched off.

In fact the very opposite can be true, and they have somehow switched on the very brain that appears to have gone blank. I was reading this to my wife when at this point she made what I think is a brilliant observation; “You can plant seeds — but you can’t lay siege!”

Give me time to process it all!

Kim and have agreed that if I hold up a hand like a stop sign it is to be taken to mean “I am totally immersed in mental processing. Can you please hold whatever it is until I indicate that it is not going to throw me off the tracks?”

Silence will indicate agreement. Thankfully the need to do this seems to be inversely proportionate to degree with which I am able to multi-task my mind.

The ability to understand and converse at even a primary school level seemed to be beyond me for a long time after my injury. Some of the thoughts which seemed to be lurking in the background are actually finding their way to the surface, so of course I am going to ‘show off ’ in some fashion in the hope that acknowledging the ones that pop out will encourage them to bring their mates. ◗ ◗ This is an amended excerpt from a book written by Trevor Short called Overcoming Brain Injury. You can email Trevero at tks3@optusnet.com.au

22 / B R I D G E M A G A Z I N E

everyone needs a little support: STEPS

Over the past few years, the Acquired Brain Injury Outreach Service (ABIOS) has successfully implemented a new approach to establishing support-style groups for people with brain injury and their families called the Skills To Enable People and CommunitieS (STEPS) Program. The fundamental difference between traditional support-style groups and the STEPS Program is that the program operates as a service initiative of ABIOS and therefore has a formal community rehabilitation focus.

The STEPS Program consists of two phases. First, the STEPS Skills Program is a structured 6-week interactive group program run by trained volunteer peer (e.g., person with brain injury or family member) and professional (e.g., health professional) leaders.

The program uses a self-management approach and is structured to address three primary topic areas – (1) How I look after myself; (2) How I live in the community; and (3) How I work with services.

Upon completing the 6-week STEPS Skills Program, many groups go onto a second phase, STEPS Network Groups, which involves developing ongoing

sustainable networks of support for people with brain injury and their families in their own community.

During this phase, each group takes ownership of how they want their group to be structured. Some groups decide to take a social focus by organising regular social gatherings for group members. Other STEPS Network Groups decide to meet more formally and develop an agenda of topics they wish to explore.

Importantly, the STEPS Program is co-ordinated by local volunteer leaders who are supported throughout both phases by health professionals at ABIOS. If you would like further information about the STEPS Program or advice about establishing a brain injury support-style group, you can contact the STEPS Program staff via email (STEPS@health.qld.gov.au) or phone on (07) 3406 2311. ◗ ◗

23 / B R I D G E M A G A Z I N E

Now and then . . .

What’s behind our new logos and names?

OUR LOGO Before

After

OUR MAGAZINE Before

The Brain Injury Association of Queensland Inc. (BIAQ) has now formally adopted the new trading name of Synapse. Though the name has changed, our organisation, people and processes still stay the same, and we continue to serve as the peak disability organisation providing specialist services to people living with Acquired Brain Injury (ABI) or behaviours that challenge our understanding.

Changing the name of our organisation was not undertaken lightly. We have worn the name Brain Injury Association of Queensland since 1986, but the new name, Synapse, promotes the value of relationships rather than a label for an injury. For us, Synapse relates to the connections between people, communities and opportunities, and a major part of our mission is to change the

◗

After

negative societal implications and stigma that surrounds the term “Brain Injury”.

The magazine’s name has now changed to Bridge. Again, this is to highlight the importance of connections, and the magazine has also been an important bridge for many readers from their old life before a brain injury, to the new life they are rebuilding for themselves.

Though our corporate face may change, our soul remains the same. ◗ ◗

Ear exercises

When somebody really listens to you, you feel understood, appreciated, interesting and worthwhile - so listening skills are crucial to making, and keeping, friendships.

A brain injury can lead to a loss of listening skills. Why? We are born selfish! Growing up is a long process of learning to balance our needs with the other six billion people living on the planet, but particularly those closest to us. A brain injury can disrupt much of this hard-won experience, and we can revert to our earlier basic patterns. Relearning your listening skills is crucial to maintaining your existing relationships, and building new ones.

What sort of problems can arise? You may now have trouble organising your thoughts into compact, structured sentences so you may tend to rave on and on. You also may have lost the ability to pick up non-verbal cues from other people. For example, you may not be able to interpret the signs of boredom — the other person does not keep eye contact, keeps looking at their watch or is looking frustrated at not being able to get a word in. When social skills have been disrupted, you will need to begin the slow process of relearning these skills.

◗

ASK QUESTIONS People love to feel you are taking an interest in them. Instead of trying to talk about yourself, focus on the other person. Get interested

in what they are talking about. Ask plenty of questions but make sure they aren’t too personal. If you have trouble with disinhibition, you may be inclined to ask offensive questions about their sex life or how much they are earning. Be appropriate!

BALANCE THE CONVERSATION Try to keep an idea of how much ‘air space’ you are hogging. You should be letting the other person talk at least half of the time. The more you let them speak, the more they will usually enjoy the conversation.

LOOK OUT FOR CUES Much of our communication is non-verbal. You know the person is probably not enjoying the conversation when they don’t keep eye contact, turn away from you, look at their watch, or stop smiling. These may be an indication you have talked too long, or on a topic they don’t find interesting. Of course, they might just be depressed themselves, or need to be somewhere else! Non-verbal cues are tricky to read at the best of times — where possible, get feedback later from a friend without a brain injury on how you went in conversations with other people.

LOOK INTERESTED Asking questions is only part of good listening.

It helps if you smile, nod and laugh in the right places. This is hard if you are depressed or nervous, but practise makes perfect. Again, get plenty of feedback from family and friends you can trust.

PRACTISE with someone you know Exercising your listening skills can be hard in new social situations. Sit down with a good friend over coffee and deliberately practise these skills. Tell them you need to refine your listening, and ask them for feedback on how you are going. Ask them if the ‘personal space’ is right — sometimes, we unknowingly stand or sit too close to people after a brain injury.

AVOID ALCOHOL AND DRUGS Plenty of our social interaction revolves around alcohol. While you might feel more relaxed, it will only amplify difficulties with poor listening or raving on too much. Stick with the orange juice and work on your social skills instead! ◗ ◗

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Rebuilding our social skills

Communication is central to reconnecting with others, so practical strategies to compensate for any lost social skills are crucial.

Our relationships with other people are the single greatest contribution to our overall happiness. Unfortunately these relationships usually suffer because our social skills rely on cognitive abilities such as attention, memory, organisation, judgment, perception and communication.

◗

common problems Common problems include: • being overwhelmed with too much information to process • difficulties with noisy environments or group conversations (e.g. parties) • standing too close or inappropriate touching when talking • speaking too loudly • inability to read non-verbal cues (e.g. signs of boredom or displeasure) • inappropriate behaviour, emotions or humour in given situations 25 / B R I D G E M A G A Z I N E

• angry outbursts or crying easily • poor listening skills and raving on • fixation on limited range of topics.

We understand it is difficult to remember all your previous social skills, so we’ve tried to simplify them under the following headings. talking Skills Actively join conversations, but don’t interrupt others. It can be tricky to get the timing right when several people are chatting.

Make sure your topic is interesting to the other person. Signs they are bored or uninterested include lack of eye contact, looking at their watch, or making excuses and walking away.

Keep things brief and stick to the point. As above, you’ll usually bore people if you talk for too long.

Don’t talk too loud or step in too close. This is probably happening if the person keeps backing away from you.

If people have told you that you talk in a monotone or appear emotionally flat, try to inject some emotion into your speech.

Don’t be too honest or direct. After a brain injury, some people get annoyed with all the unwritten rules of communication and choose to bluntly honest. You have every right to make that choice, but you will lose friends and have

why should i bother working on my social skills?

Social skills are important for: • Getting things you want (e.g. job, money, friendships) • Maintaining good relationships • Empathising with others • Avoiding conflict or unpleasant situations.

trouble making new ones. Part of your recovery from a brain injury is to relearn your lost social skills, and the importance of all those unwritten rules that are now a struggle to relearn. listening Skills It is crucial to take turns in a conversation.

If you talk all the time, only about things that interest you, then you will quickly get a reputation for being self-centred. Even if people know how a brain injury has affected you, they will not enjoy talking with you if you hog the conversation.

Respond with similar emotions. - If the other person is happy, then smile with them.

Try to use empathic responding - review positive points and emphasise positive conclusions. e.g.

“That’s fantastic you won the award, your family must be proud.”

Make it obvious you are listening by rephrasing and repeating what the other person has just said - e.g. “So you think Murray is upset?”

Negotiation skills • Try to see the other person’s point of view in an argument and attempt to resolve the issue.

• Utilize conflict management.

• Apologise when necessary.

• Try to ignore trivial annoyances, however, inform people when they irritate you unbearably and ask them to stop - e.g. “I know it’s unintentional, but when you tap your pen I can’t concentrate. Could you please stop.”

• Others aren’t always going to see things the same way you do. When attempting to resolve an argument, rather than trying to make others believe your point of view meet them in the middle. - e.g. “I think we shouldn’t go till 7pm and you want to go at 5pm, so how about we go at 6pm?”

Don’t forget to ask for support when necessary.

Manners • Use “Please” and “Thank you” • Apologise when necessary.

• Respond to invitations - Even if it is to say you can’t go, respond if you are invited to something.

• Respond to messages in a timely manner • Be on time • Be a “good sport” - Be sure to congratulate the winner if you lose, and don’t gloat if you win.

Non-Social Behaviours Some social behaviours can have negative affects too. So the following are behaviours that are best avoided.

• Forcing people to do things for you • Using other’s properties without permission • Invading other’s personal space - Usually getting within an arms length of another person without being invited is inappropriate • Not respecting other people and their property - Treat other people’s things delicately. If you borrow something, return it in the state it was when you borrowed it (e.g. Car – full of petrol, and without any new scratches) • Insulting others - Don’t point out people’s flaws, or comment on something that may make them uncomfortable.

Follow these simple and easy tips, and you’ll be on the way to having positive and valuable social interactions in no time.

Enlist the help of family & friends This may involve first teaching them about Acquired Brain Injury and the effect it has had upon you. Some people may not accept that you have lost skills. On the other hand, some may be prepared to accommodate even severely inappropriate behaviour. You may need to ask people to be more critical, and to give you more feedback in the home so that you can relearn how to act appropriately in the community.

why do i have these problems with my communication?

Our social skills are an incredibly complex system of behaviours that are central to communication between individuals, involving giving, receiving and interpreting messages. Social skills include verbal and nonverbal behaviour, and most importantly, social skills are learned. It takes at least two decades just to learn the essentials of communicating with other people, and of course we continue (hopefully) to hone these skills as we get older.

So we take our social skills for granted. We follow the unwritten rules of how to behave, talk and interact without thinking about it.

But after a brain injury, we often lose these automatic abilities, and have to relearn these complex skills.

Join a peer support group Contact your local Brain Injury Association for possible groups in your area. Some groups are for everyone with a brain injury, but there are also groups for specific causes of brain injury such as stroke or traumatic brain injuries. watch other people Don’t be too obvious about this! The best way of learning social skills is to practise them, but the second-best way is to watch other people.

Of course, not everyone you may watch will behave appropriately — a good tip is to avoid reality television and focus on busy public places. Sit in a café in a shopping centre and watch the world go by. ◗ ◗

Friendship Skills • Identify common interests • Be affectionate • Self-disclose - Tell your friends your views on things, or issues that are bothering you.

• Show loyalty - Support your friends around other people • Don’t indulge initial negative reactions - If your friend acts angry and yells at you, don’t immediately get angry back. Perhaps they have just been told something unpleasant, and aren’t angry at you. Give them time to calm down and ask them if everything is ok.

Responding with kindness is sometimes all that’s needed to diffuse negative situations.

• Take the time to draw others into conversations. e.g. “What do you think about that idea, Joe?”

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Self-centredness STUFF I HATE MY STUFF

ME! Disregarding the thoughts, feelings or talk of others will damage any relationship, and is unfortunately a common outcome after a brain injury.

A brain injury can result in dramatic personality changes, and sometimes the self-centredness and egocentricity more commonly associated with children can emerge.

The inability to see the world through someone else’s eyes can seriously damage important relationships with family, friends, employees and the local community.

We have all met people who place their needs before that of anyone else, and see how most people find them unpleasant to be around. It can be very disturbing for families when a loved one acquires these traits after a brain injury.

This inability to see another’s point of view can be very destructive as the family often cannot understand how a previously caring person is now not only self-centred, but often has no insight into how this behaviour affects everyone else.

◗

Why does it happen?

Although we take it for granted, the ability to view the world from someone else’s point of view is a very complex cognitive skill. This is just one of many sophisticated mental skills that occur in the frontal lobe of the brain.

27 / B R I D G E M A G A Z I N E

E

STUFF ABOUT M

OTHERS

THE UNIVERSE

Unfortunately this is a very common area to be affected in a traumatic brain injury, as the frontal lobe sits on top of bony protusions in the skull that cause damage when the brain is moved across these violently.

This is why self-centredness frequently goes hand in hand with lack of self awareness, anger, Depression, fatigue and reduced social skills. It is no wonder that families are often brought to the breaking point in the months after the injury.

Impact on the family Families are usually overjoyed when their loved one survives the initial trauma of acquiring a brain injury. After discharge, a relieved family will go to great lengths to help with the continuing rehabilitation process, usually making many sacrifices in time, money and effort on the road to Recovery.

As the months and years go by, families understandably become frustrated if none of their sacrifices are acknowledged, in fact often they will be criticised for not being supportive enough. Friends will be even less likely to tolerate self centredness meaning the family is

usually left as the only social network available.

In some cases the person may be able to portray a cheerful caring seemingly unchanged personality around their old friends but immediately revert to their self centred behaviour when only the family is around. This is particularly difficult as these friends may not believe the family when they talk about the difficulties of the new personality they are facing.

What the family can do Often the hardest part for a family is accepting that the self centredness is not going to go away.

Some say that understanding that the brain injury has caused the self centredness eventually brings them to a point where they can accept the changes and enact strategies to manage the situations that arise.

Sometimes the family unwittingly contributes to the problem. In the early days after the injury families may spoil the patient and do everything for them. If the family member is self centred they will obviously lap up the attention, become dependent and expect to be the centre of everyone’s world even more. Families need to be very firm in setting boundaries, and realise

FACT SHEETS “Gavin used to be a thoughtful considerate husband and father.

We’ve made so many sacrifices since his hospital discharge but he says we have not been supportive. No matter what I’m doing he expects me to drop everything to do the smallest tasks and responds with outbursts the moment he doesn’t get his way.”

After practical solutions to specific problems?

Remember our website has dozens of fact sheets grouped under the following headings:

“Before her Stroke Belinda was a great listener. But now she never takes an interest in my life any more, and gets frustrated when the kids want her attention.”

“I gave up my job to look after Andrew full time. This has been so exhausting that I’ve arranged respite one night a fortnight to have coffee with friends for an afternoon. Every time he sulks and complains that I don’t really care about him.”

• causes of Acquired Brain Injury • Medical • Psychological • Sensor-motor problems • Cognitive and behavioural issues • Family • Children • Discharge • Post-acute and acute • Statistics.

Visit synapse.org.au to either read these online or print out to read at home or mail to others.

ABI: THE FACTS

that they must look after their own needs as well as their loved one’s needs.

Understand that your loved one will no longer be concerned about your rights and needs.

Instead of feeling hurt try to be assertive about your rights and needs.

MANIPULATION In some cases a person will not only be self centred but very skilled at manipulating their family emotionally. If their demands aren’t met they try various strategies to get what they want such as threats, pleading, criticising the lack of compassion or sullen silences. Family members are often surprised that their loved one’s skills in manipulation are so effective when their overall social skills have dropped significantly. In these cases it is vital for the family to have agreed on boundaries for acceptable behaviour, not be drawn into arguments and always be assertive.

If there is a support group for survivors of brain injury it may help if they can go along.

Sometimes seeing similar behaviours and attitudes in others can bring about some level of self awareness.

Another possible way to increase a person’s awareness of their self centredness can be through therapeutic sessions with a Neuropsychologist.

If an assessment indicates the person could benefit from therapy, the neuropsychologist will gradually gain the person’s trust and begin exploring and challenging their beliefs and behaviours. With time this can gradually increase a person’s awareness and insight into how their behaviour impacts on others. ◗ ◗

This comprehensive 72-page publication covers all the major issues arising from Acquired Brain Injury, from the hospital phase through to long-term issues like legal problems and maximising your recovery.

Call Synapse on 07 3137 7400 or email info@synapse.org.au to have your free copy mailed out. Bulk orders can be arranged as well.

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In Memoriam It is with great sadness that Synapse recently heard of the passing of one of our earliest supporters, Dr David Charles-Edwards (1994-2010).

He was a man that provided inspiration to many people, and proof that it is possible to triumph over the challenges arising from an Acquired Brain Injury. From the 1980s to the 1990s he served on the board of our association when it was known as Headway Queensland. David held the position of President of Headway Queensland and assisted in its growth and evolution into the Brain Injury Association of Queensland (now Synapse).

In this, our first edition of Bridge, we would like to pay special tribute to Dr CharlesEdwards, a man who was loved by his family, admired by his peers, and will be remembered by many of us.

“It is inevitable that some defeat will enter even the most victorious life. The human spirit is never finished when it is defeated . . . it is finished when it surrenders.” - Ben Stein, American Writer, 1944.

◗

A Man of Science Dr David Charles-Edwards navigated the challenges of living with Acquired Brain Injury for much of his life. It is often when many of us are most challenged, and when all circumstances seem against us, that we shine and triumph over the human spirit. It seems by his achievements and passion for life David made the strongest gesture he could bestow, and showed the powers that be what he was made of.

Acquiring A brain injury In 1979, when David was 35 years old, the car he was driving with his wife and two daughters collided with a semitrailer. His whole family faced a period of recovery that would see David’s family adjusting to a marked change in his behaviour. His three children would grow to become accustom to their father’s ways.

It was very difficult for David’s wife, Jeni, who at the time was caring for her three young children and didn’t have the support of her immediate family to fall back on.

David experienced double vision, and became easily tired and balance. He did not cope well in crowded places, and also had reduced impulse control and anger management issues.

Despite this, David in time continued to pursue his passion for science. He would

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become an enthusiastic volunteer and according to his youngest daughter Elin, he enjoyed a wicked sense of humour.

David’s career resulted in numerous scientific publications and he mentored young academics.

Those who knew him saw a very caring person toward the elderly and anyone with a disability.

Life after a brain injury After his accident David and his family ‘got by’; however, support for people around that time almost thirty years ago was almost nonexistent, and families affected by a brain injury had little to no information or services available.

Once he was medically stable he was sent home with very little help, and his family had to muddle through.

According to his wife and daughters they ‘had to get used to the new David’. David knew that he had limitations because of the accident, but knowing you have limitations is very different to learning to live with them.

David experienced the common symptoms of difficulty with impulse/temper control and reading non-verbal communication cues. This was combined with — according to his family — his innate stubbornness, and he found it hard to stay connected with people and maintain friendships.

Over the 40 years of his professional working life David would learn to overcome his challenges and successfully grow a rewarding network of friends and colleagues. Among them was Greg Carey, a journalist at 4BC Brisbane.

David was generous with his time, and dedicated time to the causes he felt most strongly about, namely Acquired Brain Injury.

Growing up with a Parent living with A brain injury When asked how life was like growing up with a parent who had acquired a brain injury, David’s youngest daughter Elin replied that through childhood it is very hard to distinguish the impact of the brain injury.

“Because the injury happened so early in our lives, Dad was simply our Dad; we did not know him to behave any other way.”

David’s daughter said that her father could be grumpy at times, short-tempered and that it seemed that his children angered him a lot. However, looking back as an adult, Elin now understands that the times he was upset were because he was either concerned for her safety (such as playing too close to the road) or because he was concerned for his balance (leaving things on the ground in the hallway), or that she was being too noisy.

“Dad was dealing with three very energetic and strong-willed daughters every day and that would have been a tough ask for anyone”.

David’s daughters remember him to be incredibly generous. As they got older, they felt their father became more aware of his own limitations as he struggled to find common ground with his now adult children.

The Importance of Connections David had only been in Australia for 10 months before the accident, and the many friends he made in life were made post-injury.

He found that the quality of his life was dependent on how well he was able to keep himself active and connected with the people around him. He became an active volunteer in the community, and continued his interests where possible. David was very supportive to his friends and co-workers.

David’s family believes that he knew that it was important to stay connected with people.

His daughter Elin said recently that it was only when at his funeral that she realised what an impact her father had made on the people around him.

A Message to other families If the Charles-Edwards family had a message for other families dealing with Acquired Brain Injury it would be that every person and every injury is different.

David’s family believes that no one can presume to understand what any other family is going through — you have to be living their exact situation to understand. They do say that when communicating with friends and others try to be open about the injury and its impacts.

To the Charles-Edwards family a brain injury is the “invisible disability”, and they know that both the person with a brain injury and their family can often feel very alone and unsupported. At the time of David’s injury community awareness and support services

david’s early life, education and interests

David Charles-Edwards was born in Wimbledon, London in 1944 and entered life at a turbulent time at the height of conflict during World War II. As a boy, he with his family to a large old house in Croydon that was requisitioned by the local authorities after his own family home was bombed.

His family arrived to their new home during a period of crisis, sharing its old-fashioned kitchen with five or six other women. David lived there for a number of years in one living room and two small bedrooms with his mother, father and older sister Diana.

David’s future career in science seemed inevitable as he had an enquiring busy mind.

At three years of age, his father made him a box of electronic bits with a little screwdriver he could use to take apart and put together again.

David was an excellent student, excelling in science at high school. He achieved a place at Dulwich College, a leading boys’ school located in the South of London.

Science was David’s greatest passion, along with building model railways. His love of model railways would inspire him to establish a Model Railway Club at Dulwich College. He completed a doctorate in Biochemistry at the University of Wales, and his professional areas of interest were in Agriculture Science and Environmental Science.

Marriage and children followed, and his young family emigrated to Australia. David added a love of the bush to his passions, travelling in and around rural Queensland.

David was a valued member of his local community and was an active volunteer with the Anglican Church of Australia based in Mitchell, Queensland. were not as they are now. How Acquired Brain Injury is received by the community is still a work-in-progress mission, and there is still a long way to go.

Having families prepared to share their stories is an important and brave step toward increasing community awareness, so Synapse acknowledges the Charles-Edwards family for their generosity and courage. We offer them our deepest condolences and wish them well for the future.

Synapse would like to thank David’s wife, Jeni Charles-Edwards, and his daughters Catrin Charles-Edwards, Elin Charles-Edwards and Bethan Hynd for contributing content for this story and their recent donation made to Synapse in David’s memory. ◗ ◗

THE KEY TO BEHAVIOUR IS EDUCATION Synapse Training believes that education is an important factor in formulating an effective response to the needs of people with Acquired Brain Injury (ABI) and those with behaviours that challenge community understanding.

Its training arm, approach and courses were developed from a unique understanding of the environment and issues that confront not only frontline workers and families, but the people whose care they are responsible for.

According to Synapse Training Manager, Grant Blest, the fact that the Association provides other services besides training to those affected by ABI, or those with behaviours that challenge community understanding, gives Synapse a special insight into the core issues.

“The training, workshops and approaches that we cover in our four training programs are practical, realistic and proven to be effective. Synapse support workers use these techniques and tools every day,” said Grant Blest.

Practical Techniques & Tools These techniques are based on knowledge and practical application in real world situations. Synapse’s trainers also keep up to date with the latest research and standards of best practice, a fact appreciated by many health professionals and therapists attending our courses.

One such health therapist is Kristin Koch.

Kirsten has worked as an occupational therapist in the neurosurgery ward of the Gold Coast Hospital for close to five years. She recently attended the Positive Behaviour Support and Understanding Acquired Brain Injury courses and found them to be valuable. Kristin has to deal with challenging and complex behaviours everyday in the rehabilitation unit.

“It is very important to me to access

training of this kind because it will help me to look at behaviour and reinterpret its meaning. Many of the people I work with become so overwhelmed, and the kind of tools and skills I have learned will help me navigate their behaviour,” said Kristin.

“I think that Synapse’s training is especially important for rehabilitation professionals.”

Leaders in Changing Behaviour Synapse has established itself as a leader in the training and education programs concerning ABI, but has recently responded to the need for training on behaviour and Positive Behaviour Support.

“We provide workshops at our training facility in Brisbane, Australia, or off-site to other associations whose staff work in the frontline,” said Grant Blest.

“We aim to provide training that is affordable and accessible, throughout Queensland, Australia, and even overseas.”

The majority of the training focuses on the topics of Understanding Acquired Brain Injury, Supporting Individuals with Complex and Challenging Behaviours and Positive Behaviour Support. The sessions are either short introduction sessions or more detailed one-day sessions.

Synapse Training came about in 2007, when the Association identified the need to provide innovative training to frontline staff. As a Registered Training Organisation, Synapse Training presents individual units of competency from the Certificate IV in Community Services (Community Work). Units are also available via distance education.

Organisations after more information can receive a brief presentation about the courses on offer. Contact Grant Blest, Synapse Training Manager, by email at training@synapse.org.au

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