018 - Bridge Magazine - Understanding Communication - 2015

VOL-18 1 / BRIDGE MAGAZINE

Communication treatment options Margaret Struchen discusses common interventions for issues with communication

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BRIDGE VOLUME 18 - March 2015 ISSN 1448-9856 General Editor:

Barry Morris

Contributing editors:

Jessica Irons

National Development Manager:

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

Living with cerebral palsy Robert looks at communication issues and a new innovation transforming his life

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Emotional lability

Bridge is produced by Synapse (trading name for the 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.

VISUAL DIFFICULTIES: Visit 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. Synapse will not be held responsible for any injuries or damages that arise from following the information provided. Material within does not necessarily reflect the policies of Synapse or the staff and Board of Management. References to other organisations and services do not imply an endorsement or guarantee by Synapse.

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An inability to control our emotions can have a serious impact on communication

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INDEX 03 Communication problems

Handy ways to regain your skills

05 Communication treatment options

Margaret Struchen on treatments

07 Egocentricity

“It’s not all about me” says Melanie Atkins

09 Communication overload

Personal insights after a brain injury

10 Lost in translation

New beginnings for an Aussie migrant

11 Losing my relationships

Maintaining friendships after a brain injury

13 Hard of hearing?

Serious issue for our communication

15 From the inside

Facilitated communication experiences

17 Living with cerebral palsy

How Robert communicates with his eyes

19 Emotional lability

The emotional rollercoaster ride

21 A brain injury affects family members

Common problems faced by families

23 Speech pathology

One of the communication experts

25 Telehealth services

Providing long distance support online

27 Neglecting neuroscience

Criminal consequences for youth

29 Coping with legal processes

An often difficult process

30 Words fail me

Illiteracy and brain injury

bridging THE GAP Jennifer Cullen, CEO of Synapse

Communication can define our reality.

Words by themselves are innocent, though few of us would question how powerful they can be when crafted together properly. Complex communication is, after all, what separates us as human. Our ability to use verbal, written, visual, and even electronic forms of communication is unparalleled.

So what is communication anyway? When you think about it, the reality is quite amazing.

It is ‘simply’ the ability to transfer wireless data from your brain to another via vibrations in the air, or via light reflected from a page. We have within ourselves, the potential to communicate with someone on the other side of the world… or even hundreds of years into the future (N.B. - remember to clean your internet browsing history).

In short, we use communication to exchange information in an attempt to control our environment.

The process of thought to speech however, is

something most of us take for granted. What about non-verbal communication – art, music, behaviour – how would you communicate if you could not use words? How would you feel if your words did not work the way you wanted?

Something common with Brain Injury (and with other Brain Disorders such as Parkinson’s, Alzheimer’s or Cerebral Palsy) is damage to the mechanisms or pathways in the brain that facilitates speech; imagine static on a phone line or a ‘crossed wire’. You may be able to hear perfectly well, but your ability to simply respond with what you want to say, is restricted.

People with this type of disorder often have no reduction in their intelligence or understanding, but because they are slow to respond (or may not speak the same way as before), are labelled as ‘slow’ or as having an intellectual disability. Imagine the frustration (see Locked-in Syndrome)!!

We spend a lot of time with clients and

their families addressing communication, as every person (with or without a disability) is individual in how they communicate their needs. Behaviours may manifest through the sheer frustration of not being able to get across a simple concept, remembering that one’s intellectual capacity may not have changed, nor their memory of a previous life before a disability.

Synapse is committed to the understanding that communication should be used to help and to heal others… that everyone has the right to express their needs, and to have their choices in life respected. To reiterate the famous quote by Voltaire, “I may not agree with what you have to say, but I’ll defend to the death your right to say it”..

Jennifer Cullen CEO of Synapse

This coming year will see a milestone event. Many organisations dedicated to improving the quality of life of those living with, or affected by a Brain Injury will begin to speak with one voice.

Together we will look to improve the support for every Australian currently living with a Brain Injury.

Together we will reconnect lives... right across Australia.

Connect with us at www.synapse.org.au 2 / BRIDGE MAGAZINE

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Communication problems

A brain disorder can impact on communication abilities in many ways, but these can be broken down into three main areas: • Hearing • The muscle movements of speech • Cognitive processes that put words to thoughts.

Communication problems depend on many factors which include an individual’s personality, pre-injury abilities, and the severity of the brain damage. Typical effects may include slow or slurred speech, difficulty swallowing, drooling or a nasal tone. Communication problems can be a mixture of both receptive and expressive problems.

Receptive skills Receptive skills are the skills involved in receiving and understanding language. Signs

of receptive difficulties may include lack of understanding or attention, problems with quickly given complex information, and requests for repetition. It should be remembered that hearing loss can also occur following a brain disorder and lead to the same effects. Ideally a hearing test by an audiologist should occur first before assessing receptive skills.

Behaviours that may indicate problems with receptive language include: • Poor recognition of vocabulary • Continually asking for things to be repeated • Difficulty with the speed, complexity or amount of information said • Not paying attention in conversations • Not understanding what is said • Difficulty remembering instructions given.

HOW PROFESSIONALS CAN HELP Following a brain disorder , these cognitive issues can make it harder to learn and apply knowledge to specific situations. A speech language pathologist can assess and treat communication problems, and provide advice to rehabilitation teams. They can help the individual with a brain disorder to cope in given social situations, using compensatory strategies and treatment to help the individual be more competent in social situations. Often the individual can learn to compensate for a disability by learning a new and different skill or by using assistive technology such as a hearing aid or augmentative communication device (e.g. speech synthesisers or communication boards).

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Expressive skills Expressive skills are the skills required to form coherent sentences, find the right words, and then produce the appropriate sounds.

The ability to use verbal or written skills to express oneself may appear unaffected, but often there are subtle problems that emerge over time. Often communication tests during rehabilitation will not detect problems as these formal testing situations will not trigger many of these subtle issues. Some of these can include: • Interrupting others constantly • Difficulty remembering particular words • Incorrect use of language • Talking about unrelated topics • Inappropriate comments in social situations • Making up stories • Minimal responses when detail is required in an answer, or conversely rambling responses • Difficulty with abstract skills in understanding humour, puns, sarcasm and metaphors • Hyperverbal or rapid, non-stop talking • Poor spelling and difficulty learning new words • Saying the same thing over and over • Trouble with writing long sentences.

Anomia - trouble with finding words Some people with a brain disorder will

HOW FAMILY & FRIENDS CAN HELP Families, co-workers, teachers and friends can play an important role in helping a person improve communication skills or learn new compensatory strategies, particularly when they work with the speech therapist to provide consistent support in the strategies being taught. Family members should ask questions and expect to be involved in the process of rehabilitation, which will greatly improve the prospects of recovery. Some useful strategies are: • Acknowledge the injury, be supportive and use active listening • Allow people to take extra time to finish their sentence or to find the word • Prompt the person to evaluate their own speech and be aware of issues • Speak clearly and simply when there is a receptive communication deficit • Work with the person to find out what techniques assist them to communicate • Try to avoid too many distractions • Reflection of feeling e.g. “This sounds really distressing for you” • Use redirection to assist people who are overly talkative or easily distracted.

The Vulcan mind meld is a reality

APPROACHES TO AVOID • False reassurance • Finishing sentences if the person talks slowly or loses their train of thought • Speaking excessively loudly or slowly • Using jargon or lengthy explanations that the individual cannot understand or follow. know the word they want to say but just can’t come up with it. This is called anomia, which means “can’t name”. Everyone has an occasional anomia; those with a brain disorder may have it frequently. It can be particularly frustrating if you are dealing with people all day long, and can lead to poor self-esteem.

A variation on this problem is saying the wrong word. Instead of saying, “pass me the spoon”, you might say “pass me the noon” or even an entirely wrong word e.g. “pass me the car.”

A speech/language pathologist is a professional who commonly works with this type of problem, using strategies such as circumlocution where the person “talks around” the word e.g. if they can’t find the word “telephone,” they could say “you dial it, you can call people.”

Dysarthria Dysarthria occurs when part of the brain responsible for the muscles used in speech have been affected. The results include low, slurred, and difficult to understand speech. A speech pathologist may help with strengthening muscles, increasing movement of the mouth and tongue, breathing exercises and slower rate of speech. In severe cases, alternative means of communicating may be looked at.

A person with dysarthria should concentrate on slow clear speech with frequent pauses. It may be an idea to commence a topic with a single word first, and to check frequently that the other person is understanding you. Conversations should be finished before fatigue sets in as speech will deteriorate quickly after that point.

Apraxia - problems with speech muscles This is a condition in which strength and coordination of the speech muscles are unaffected but the individual experiences difficulty saying words correctly in a consistent

way. For example, someone may repeatedly stumble on the word “yesterday” when asked to repeat it, but then be able to say it in a statement such as, “I tried to say it yesterday.”

The type of treatment depends on the severity of apraxia. In mild cases, therapy may start by saying individual sounds and contrasting them and thinking about how the lips and tongue should be placed. Sometimes the timing of rhythm of speech to tapping or clapping helps to speak more clearly.

Contrastive stress drills use the natural rhythm of speech to increase intelligibility. In this exercise, the same sentence is repeated with different stress patterns, changing the meaning of the sentence. Individuals with mild apraxia learn strategies they can use to produce words which give them trouble. For very severe apraxia, alternative and augmentative systems, such as physical communication via gestures and facial expressions or written communication using a board, pre-printed cards or a notebook, are often employed.

Cognitive problems A brain disorder can affect our abilities to control our impulses, empathise with others, understand social ‘rules’ and many aspects of our behaviour. As a result, a person may stand too close others, interrupt in conversations, say inappropriate statements, be overly dogmatic or argumentative, along with a range of other communication issues.

In some cases the person may not appear to have communication difficulties until they are in stressful situations such as returning to work or study. These cognitive problems will usually stem from the inability to control impulses and emotions, remembering things already said, maintaining attention, dealing with abstract language, or processing information quickly.

Anyone into Star Trek will know of Spock’s mind meld.

Long a science fiction dream, the ability of one brain to communicate directly with another is becoming a reality.

Recent research established that two people in different parts of the world could communicate very basic thoughts through technology. The findings were published in PLOS ONE. “We wanted to find out if one could communicate directly between two people by reading out the brain activity from one person and injecting brain activity into the second person, and do so across great physical distances by leveraging existing communication pathways,” said co-author of the study, Alvaro Pascual-Leone. “One such pathway is, of course, the internet, so our question became, ‘Could we develop an experiment that would bypass the talking or typing part of internet and establish direct brain-to-brain communication between subjects located far away from each other in India and France?’”

The recent development of brain-computer interfaces has provided the basis for brain-to-brain communication. The study demonstrated the conscious transmission of information between human brains is possible through the intact scalp and without intervention of motor or peripheral sensory systems. Pseudo-random binary streams encoding words were transmitted between the minds of emitter and receiver subjects.

Basic messages such as “ciao” and “hola” where exchanged without the use of speech, writing, or body language.

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Communication treatment options Margaret Struchen discusses common interventions for issues with communication Changes in social communication can be one of the most difficult problems for persons with a brain injury, as well as for their loved ones.

Social communication skills play a key role in being successful in one’s home life, work, and school. Communication difficulties can affect the ability to get and maintain a job after injury. They can also affect the ability to make and keep friendships and can impact family relationships. The following illustrates some research literature in this area.

Social integration Nearly half of patients with a severe brain injury had limited or no social contacts and few leisure interests one or more years post-injury.1 92% of both family members and persons with a brain injury reported that the person with the brain injury had changes in his/her friendships; while 75% reported that the person with a brain injury had difficulties in making new friends.2 Discourse measures of conversation samples (analyses of language behavior such as syntax, vocabulary, conversational skills, cohesion) were related to social integration.

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Employment Conversational skills were identified as a major predictor of failure to return to work following a severe brain injury, in addition to personality problems, behavioural disorders, and cognitive status.3 The most common causes of job separation were found to be “interpersonal difficulties,” “social cue misperception,” and “inappropriate verbalisation.”4 Those who failed to return to work were rated by informants as displaying significantly more undesirable personality changes and by independent raters to be significantly less socially skilled.5 Family Relationships Several studies have shown that behavioural and emotional changes outranked cognitive changes in contributing to family burden.6 Family members reported both elevated distress and impaired family communication functioning when compared to family members of people without a brain injury.

Less socially skilled persons showed less positive affect and required more effort from their family member to maintain a problem-

solving interaction, which was interpreted to suggest that extra burden was placed on family members of individuals with social skill deficits.

Approaches to treatment The following illustrates some of the common approaches that are used clinically in both neurological as well as other clinical populations (e.g., persons with social anxiety).

This information is provided to summarize current clinical practice approaches, but is not intended to be a prescriptive list.

Structured feedback It can be useful to get information from someone who is trusted about what aspects of communication went well and what aspects need to be worked on. This is especially helpful if the feedback can be given immediately after the conversation takes place. Feedback should address both positive aspects of communication abilities as well as areas that need improvement.

Use of videotaped interactions Videotaping conversations and then playing them back can be very helpful in increasing awareness of communication strengths and weaknesses.

Modeling A therapist or other communication partner can demonstrate ways to handle different communication situations.

Shaping, cueing, and fading Shaping refers to reinforcing behaviours that approximate the target communication behaviours until the target response is reached, cueing refers to hints or guidance to help increase the likelihood that a particular communication behavior will occur, and fading refers to the gradual reduction in the amount of guidance that is needed from cues.

Role-play and rehearsal Practising different communication situations can be very helpful.

Positive reinforcement Providing praise and encouragement for positive communication behaviours can help.

For some clients, setting up a system for the provision of material rewards may also be useful. For example, a client could earn points for each occasion in which he or she engaged in a positive behaviour (e.g. initiating a conversation) or failed to exhibit a negative behaviour (e.g. interrupting others) that could be used to earn a reward (e.g. an article of clothing or a dinner out at a restaurant).

Homework Working on communication skills in daily life is especially important. The more opportunities that a person can work on communication behaviours outside of therapy, the more likely that positive changes will be made.

Environmental modifications “in vivo” Context-specific interventions that address modifications to the person’s environment and use of supported relationships to address skillbuilding in the natural environment may help address problems with generalising treatment effects to the community.

A key factor in improving social communication skills is often perceived to be the involvement of family members, friends, and others in the community in helping to develop and practise skills and to provide feedback and support. A trusted family member or friend can help provide feedback, coaching and encouragement, and can help practise communication skills.

Face blindness

These excerpts from “Social Communication & Traumatic Brain Injury: A Guide for Professionals” are reproduced with the permission of Margaret A. Struchen, Ph.D. from TIRR Memorial Hermann.

FOOTNOTES 1 Weddell R, Oddy M, Jenkins D. Social adjustment after rehabilitation: A two year follow-up of patients with severe head injury. Psychol Med, 1980; 10:257-263.

2. Bergland MM, Thomas KR. Psychosocial issues following severe head injury in adolescence: Individual and family perceptions. Rehabil Counsel Bull 1991; 35:5-22 3. Brooks DN, McKinlay W, Symington C, Beattie A, Campsie L. Return to work within the first seven years of severe head injury. Brain Inj. 1987; 1:5-19.

4. Sale P, West M, Sherron P, Wehman P. Exploratory analysis of job separations from supported employment for persons with traumatic brain injury. J Head Trauma Rehabil. 1991; 6(3): 1-11.

5. Godfrey HPD, Partridge FM, Knight RG, Bishara S. Course of insight disorder and emotional dysfunction following closed head injury. J Clin Experimental Neuropsych. 1993; 15: 503-515.

6. Brooks DN, Aughton ME. Psychological consequences of blunt head trauma. Int Rehabil Med. 1979; 1: 160-165.

FUTURE DIRECTIONS Additional investigation of approaches to social communication intervention will be important to demonstrate the impact on specific communication behaviours, to better understand which interventions work best for which clients, and to better address the issues of treatment intensity, treatment length, and maintenance of treatment effects. Various approaches can contribute to our evidence base, including well-designed case studies and case series, as well as additional randomised controlled clinical trials.

One area that deserves increased attention is the evaluation of and intervention for social perceptual deficits that may be contributing factors to social communication difficulties for some individuals with a brain injury.

Improving our understanding of the relationship between impaired self-awareness, impaired social perception, and social communication will also be an important future endeavour.

In addition to the approaches that are more traditional within the clinical setting, an increasing emphasis has been placed on the use of context-specific environmental modifications (e.g., in the workplace or during leisure activities), such as training and coaching of work supervisors and other communication partners so that they know how to provide appropriate types and amount of support and are able to reduce those supports effectively as the individual improves his or her performance.

When a brain injury can potentially affect everything we say, do, think and feel, it’s no wonder that at times it can have very unusual effects. Prosopagnosia, also called face blindness, is where the ability to recognise faces is affected, while eyesight and the ability to recognise all other objects is unaffected.

It appears to be caused by damage to a very specific part of the brain, the fusiform gyrus, and its effects can be devastating in terms of relationships, employment, and communication.

As with many aspects of brain injury, rehabilitation uses compensatory strategies so that the person can use things such as hair colour, body shape, clothing, gait and voice to identify others.

Making up memories Confabulation is a memory disorder that may occur in patients who have sustained damage to both the basal forebrain and the frontal lobes. Confabulation is defined as the spontaneous production of false memories – either memories for events which never occurred, or memories of actual events which are displaced in space or time.

These memories may be elaborate and detailed.

Some may be obviously bizarre, such as a memory of a ride in an alien spaceship; others are quite mundane, such as a memory of having eggs for breakfast, so that only a close family member can confirm that the memory is in fact false.

It is important to stress that confabulators are not lying. They are not deliberately trying to mislead. In fact, the patients are generally quite unaware that their memories are inaccurate, and they may argue strenuously that they have been telling the truth.

Treatment for confabulation is usually through cognitive techniques such as psychotherapy. Occasionally there may be a more direct treatment, such as doses of vitamin B to increase thiamine levels.

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Egocentricity It’s not really “all about me”; it’s all about the brain injury according to Melanie Atkins

Damage to the brain causes egocentricity.

It is a common cognitive outcome after brain injury, and one that can be very difficult for family and others to cope with.

If you are supporting people with brain injury it is more than likely you will come across egocentricity.

In a Family Studies Project asking families about what kind of problems they had (conducted by the Research and Training Center on Brain Injury, at the State University

of New York, Buffalo), they found 61% of people with brain injury were reported as “occasionally self centred.”1 What does egocentricity look like?

Egocentricity affects a person’s ability to notice things, to put themselves in another person’s position, which means they may not see the needs of others.

This may cause a person to seem more self -centred, selfish, and not able to care about other people’s feelings or needs. A person who is

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 they may be criticised for a perceived lack of support. Friends will be even less likely to tolerate egocentric behaviour, 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.

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egocentric as a result of brain injury may not be able to put themselves in another person’s shoes and show empathy, even towards their partner or close family.

A person may seem less able to listen to others, and appear to be mainly focussed on their own thoughts and feelings. At times, a person may appear jealous of others, pushing to get attention, even the attention of their own children or grandchildren.

Why does egocentricity happen?

Think about what a person with brain injury has been through, and is going through. Think about the focus and energy a person with brain injury needs to put into thinking, and making it through each day. Think about that human survival tactic that focuses each of us on our survival when we are challenged.

All of this can cause a person to become focussed on themselves and their own survival.

Often associated with frontal lobe damage, there are all kinds of changes in the function of the brain that can combine to create egocentricity.

Think for a minute, and list what you need to do to have empathy for others. What steps do

IS THE FAMILY CONTRIBUTING TO THE PROBLEM? Sometimes the family might unwittingly contribute to the egocentricity. In the early days after the injury, families may spoil the patient and do everything for them. If the family member has become egocentric they will obviously lap up the attention, become dependent, and expect to be the centre of everyone’s world even more. In these cases, the family will need to be very firm in setting boundaries, and realise that they must look after their own needs as well as their loved one’s needs.

• Take on board and process what others think, feel and say. e.g. “When Mary said ‘I need you to support me today, I am tired and can’t cope with the kids.’ That probably means I need to find out how best to make it easier for her.”

• Be able to ask appropriate questions to find out about other people’s thoughts and feelings e.g. “You seem upset can I do anything?”

• Be able to listen and understand what you hear.

• To be able to wait and be patient e.g. “Mum is really busy right now, I better wait before I ask for her attention.”

That is quite a list of things you need to be able to do to put yourself in another person’s shoes. Consider that changes in any of these skills and tasks, or any combination, could create egocentricity, making it difficult for a person to understand, and respond to the needs of others.

you go through to be concerned, to care about others? Check out your list with the following points – add any others you can think of: • The ability to be able to imagine yourself in another person’s place.

• Show with facial expression and body language your understanding and empathy.

• Being able to understand and critique your own behaviour e.g. “I am being selfish here.”

• Think through, and be sensitive and appropriate in the way you tell other people what your needs are.

• To have awareness of your own emotions and emotional responses to others.

• Be able to weigh up all sides of any action or outcome, and combine the information to make a decision about how to act.

• Be able to remember different experiences, people, and outcomes from the past e.g. “Last time I talked about grandma the children became upset. I had better not mention her today.”

• Be aware of and understand other people’s emotions and emotional responses e.g. “Oh he is crying, that means he might be upset.”

Strategies to help address egocentricity The following is a brainstorm list of all kinds of strategies that might be helpful. Discuss with the person you are supporting, their family and team to decide which might work better. Which are worth a try?

Remember to start with strategies and changes the person is interested in, and do not try to change too much, all at once.

Think very carefully about your own reaction.

Examine your own motivations and feelings closely. Often it is so much easier to respond to a person who is grateful, and who appreciates our efforts. We often do not react well to those we think are being “selfish”. Can you change your own behavior and approach to better assist the person who appears to have egocentricity?

No matter how frustrating it becomes, remind yourself egocentricity is because of damage to the brain. Work hard not to take it personally.

Try to understand why egocentricity is happening. Which of the tasks we need to be able to do to show empathy and understanding (listed above) might be creating difficulties?

What skills can you help to build up and support any of these tasks?

Talk about, role play, and explain situations from the other person’s point of view, both after situations occur and as potential examples.

Revisit and act out situations that have occurred – reinforce things like taking turns,

the correct way to respond, and the appropriate social skills needed.

Practise, practise, practise – situations that are coming up and that have past. Provide a briefing: what is happening for other people who will be involved. Practise asking about others. As much as possible, practise where they happen in the real world.

Find consistent, simple strategies that assist a person to stop talking about themselves e.g. maybe a script or timed response, or something that works and fits with the person e.g. Gemma was great at keeping time and worked hard to learn short scripts. Her strategy was to time herself for about three minutes and say “Enough about me, what about you?”

Ask questions to encourage thinking about others like: “What do you think X’s feelings and thoughts might be?” “What does it mean when someone starts to look away from you and starts talking to someone else?”

Give lots of positive feedback and encouragement. Notice when things go well and say so. Describe examples of when there was consideration for another, when appropriate responses were made, and when there was understanding of another person’s feelings.

Give feedback and gently explain in a clear way what happened when a situation was not okay. What was not okay, and what would the appropriate behaviour or response have been? Remember that often a person who has egocentricity is not able to evaluate their own behaviour so the feedback needs to come from others.

Be sensitive, and assist the family to live with the egocentricity and understand that the behaviour and responses are not deliberate.

1 Willer, B. Linn, R.T. “Practical Issues in Behaviour Management for Family Members of Individuals with Traumatic Brain Injury.” Neuro-Rehabilitation, 3 (2) 40-49, 1993. Andover Medical ABOUT THE AUTHOR Melanie Atkins began a website called Changed Lives New Journeys for people interested in brain injury, particularly supporters of people with brain injury who suddenly find themselves part of the journey without a map. Visit her site at www.changedlivesnewjourneys.com for excellent brain injury resources and articles.

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Communication overload Personal insights into daily communication issues 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.

Simple questions ain’t that simple!

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

It becomes nasty when the simple “Yes” is 9 / BRIDGE MAGAZINE

followed with “Would you rather go before or after lunch”?

That opens a 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 to 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!”

What’s behind that blank look you see 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 a 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!”

Hang on, give me time to process that!

Kim and I 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”.

Lost in translation Immigration, language skills and a brain injury... a new beginning for Julian Hello everyone, some of you may remember me from a previous article in Bridge where I told my story – if not here’s a summary.

In February 2010 I acquired a brain injury when a taxi ran me over and left me in a coma for 20 days. I was rushed to the Royal Brisbane Hospital and after waking up I couldn’t speak or walk so those were my two goals at the beginning.

When I was able to walk and talk a bit I got transferred to BIRU, the brain injury rehabilitation unit, in the Princess Alexandra Hospital. There I had occupational therapy, speech therapy and physiotherapy daily.

At that time I really wanted to get out and escape from hospital, but one thing I loved was the food in there!

I spent four months in BIRU before being discharged and going home for good.

All together I was in hospital for six months and I was looking forward to daily visits from my friends, going out alone and just always being busy. Then I got very sad when I realised that I expected too much upon my return to society – everyone was busy and I couldn’t be independent at the time. I was so bored and frustrated.

A month later I went to the cinema with a friend to see Black Swan and that’s when my

episode of paranoia and depression started.

The movie tells the story of a schizophrenic ballerina and how she struggles with her mind, and I saw so much of what happened to her in my own life.

The worst part was at night before sleeping because I was convinced that for some reason I was going to wake up again in hospital.

I told my father’s wife Dora about the movie and how I was scared of being schizophrenic.

She comforted me and said that those were nonsense thoughts – after a while I got over that fear thanks to my family and because I started seeing a psychologist (and no, I’m not schizophrenic).

Some weeks later we received a book in the mail called “Surviving an Acquired Brain Injury” but I didn’t really pay much attention to it at first. Then Dora suggested that I translate the book into Spanish so that all my family understood what happened to me.

I started the translation without much interest and saw it as a burden, but as I read everything I understood much of what was happening in my mind.

That occupied most of my time, which was so important for not letting the bad thoughts and depression take over me.

When a therapist from the Acquired Brain Injury Outreach Service came to my house for

the monthly checkup we showed her the book that I was translating. She was quite impressed and contacted Synapse.

In 2011 I met up with Synapse and started working as a volunteer two days a week and now I work three days. I even have my own desk with decorations!

I started translating previous issues of Bridge magazine and now you can find some of these online at synapse.org.au.

I am so grateful to have this job because I feel connected with society, I get along very well with all my colleagues and I feel that I’m helping to spread the message of surviving a brain injury to more people around the world. That work has also served as therapy for my cognitive skills and to improve my concentration.

Overall I want to see myself as a strong survivor and I’d like to help those who’ve suffered a brain injury to keep positive and make the most of their abilities. I would love to travel around the world so I’m thankful I kept my passion and ability for languages. I started learning Russian since I came to Australia seven years ago and recently I started with Japanese.

That’s a great method for rehabilitation because it works the memory, reading and writing skills.

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Losing my relationships A brain injury can threaten our main key to happiness – our connections with partners, children, work mates, friends, relatives and parents We may desire power, sex, status and the latest consumer goods, but these do little to provide lasting happiness.

About two years after my brain 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?

Too much talking, not enough listening 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. Yet when others talked, it seemed my eyes glazed over after two sentences and I 11 / B R I D G E M A G A Z I N E

looked bored. To top it all off, I was quite blunt now and could offend others in subtle ways (“that new outfit looks ridiculous, why did you buy it?!”).

Unwanted but much needed 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 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.

Author: Simone Johnson

Just because you have a brain injury doesn’t mean you don’t deserve a home of your own.

Of all of the services we provide, providing a home for someone gives us the greatest satisfaction because we know it makes a genuine difference.

As an accommodation service provider, our primary aim is to offer an improved quality of care for our clients, ensuring that they have greater choice and control over their own lives.

We find that by providing personalised level of care and individual support, a higher level of quality service, our clients become more settled and happier. Their behaviours begin to reduce allowing them to experience an increased quality of life. And as their needs reduce so does their cost of care, which relieves the pressure on everybody.

Our philosophy is that accommodation isn’t a destination but rather a gateway to reconnecting with community and life. Whether it’s a member of your family or indeed a client, you know that they deserve more choice and control over their own destiny. They deserve the opportunity to lead a more fulfilling life.

That opportunity begins with a phone call to us.

Call 1800 673 074 or email us for more information at info@synapse.org.au or visit synapse.org.au

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Hard of hearing?

A brain disorder can affect our hearing, with serious implications for our ability to communicate

A brain disorder can damage both mechanical and neurologic processes and result in a variety of hearing difficulties.

Our hearing process has two stages: the mechanical and a neurological process. Trauma most commonly affects the mechanical process, and sometimes damage to the parietal or temporal lobes can disrupt the neurological process. Thankfully many hearing difficulties are not permanent and can be reduced or eliminated with treatment.

Tinnitus Tinnitus is experienced as noises which are commonly like a buzzing, hissing or ringing in the ears. It is usually caused by damage to the mechanical process. Because accurate diagnosis and treatment are needed, a trip to the doctor and possible referral to an audiologist are required.

Tinnitus can be worsened by exposure to 13 / B R I D G E M A G A Z I N E

loud noises, excessive stress, caffeine, alcohol, nicotine, some illicit drugs and medications, and quinine found in tonic water.

Some audiologists run clinics to help manage tinnitus. Other treatments include hearing aids, tinnitus retraining therapy or cognitive behavioural therapy to alleviate distress and produce adaptation to tinnitus.

Meniere’s syndrome This syndrome is caused by excessive pressure in the chambers of the inner ear.

Nerve filled membranes stretch which can cause hearing loss, ringing, vertigo, imbalance and a pressure sensation in the ear. Although it can not be cured, treatment can alleviate the symptoms with medication such as diuretics or steroids, electrical stimulation or simply limiting movement. There are various surgical procedures that may decrease the pressure or remove/deaden the nerves responsible.

Auditory agnosia This is impaired recognition of nonverbal sounds but intact language function. This rare outcome is normally from damage to the temporal-parietal region of the brain which interferes with the cognitive process of hearing.

There may be an inability to understand spoken language while the ability to speak is preserved.

Auditory agnosia often gradually resolves itself over time.

Sensitivity or hyperacusis Sometimes trauma to the inner ear can cause certain noises or pitches to become extremely loud or soft. Our typical western lifestyle, with its barrage of noise, can be a living hell for some individuals with a brain disorder whose sensitivity to sound has been affected.

A few examples of difficult situations include dining out, taking a walk, washing the dishes, using a vacuum cleaner or listening to music.

PHYSICAL DAMAGE TO OUR HEARING A brain disorder can damage both mechanical and neurological processes and result in a variety of hearing difficulties. Our hearing process has two stages: the mechanical and a neurological process. The mechanical process is carried out by the ear which has three sections, the outer, middle, and inner ears.

The outer ear, consisting of the lobe and ear canal, protects the more fragile parts inside.

The middle ear begins with the eardrum, a thin membrane which vibrates in sympathy with any entering sound. The motion of the eardrum is transferred across the middle ear via three small bones to the inner ear where a tube called the cochlea is wound tightly like a snail shell. From here the neurological process begins and the brain translates vibration into electrical impulses.

Trauma most commonly affects the mechanical process. An eardrum may rupture, any of the small bones could break or there could be bleeding or bruising of the middle ear. Sometimes damage to the parietal or temporal lobes can disrupt the neurological process.

Compounding the problem is that the disorder is often not diagnosed, and the person has trouble convincing others that the problem exists.

Trying to escape this deluge of sound is not easy, and sufferers of hyperacusis may resort to a reclusive lifestyle to cope. The problem is normally a collapsed tolerance to normal environmental sounds. The person will often test as normal on an audiology test, but their ears have lost the ability to deal with quick shifts in sound loudness.

As mentioned, ear-plugs and ear-muffs can be a great help. Activities can be restructured so that dining out or shopping can be done outside the peak hours, to avoid excessive noise.

A commonsense approach to diet also helps.

Avoiding stimulants such as nicotine or caffeine reduces the body’s sensitivity to noise. A proper diet and exercise play their part in better overall health, which will impact indirectly on hyperacusis by reducing stress.

Hearing clinics can provide therapy with a specially programmed hearing aid to manage the hyperacusis. They may also provide a soft noise generator to be worn while awake for up to 18 months. Long-term exposure to gentle sound at a barely audible level can desensitise the ears and improve both hyperacusis and tinnitus. This ‘white noise’ contains every frequency audible to humans, and can be likened to the sound of distant surf or wind, and can help up to 90% of sufferers.

As with many effects of brain disorder, hyperacusis is worsened by stress and fatigue.

Good sleep and avoiding stressful situations will maximise the ability to deal with noise.

It should be stressed that there are no ‘cures’ for hyperacusis. The most effective solutions involve increasing the tolerance of noise, so the individual with a brain disorder needs to walk the fine line between protecting their ears by minimising discomfort, yet exposing themselves to sufficient noise to build up their ‘immunity’.

Over-protection will only further increase the effect of hyperacusis.

What you should do If you are experiencing auditory problems, see your doctor, as there may be a treatable medical cause. A referral may be needed to have your hearing checked by an audiologist (hearing scientist), or you may be referred to an ear/nose/throat specialist. Some audiologists run specialist clinics to help manage some conditions and they fit hearing aids and/or therapeutic noise generators if needed.

Good quality and properly fitted hearing aids reduce and even eliminate most tinnitus associated with hearing loss. They take away the strain of listening and distract from the tinnitus by increasing sounds in the outside world.

Therapeutic noise generators are a hearing aid type device for people with no hearing loss that produces a blend of external sounds. This stimulates most fibres of the hearing nerve to deviate attention away from the tinnitus.

Tinnitus retraining therapy aims to reduce and ultimately eliminate tinnitus perception. It combines auditory therapy (hearing aids/noise generator) and counselling aimed to change negative beliefs, distract from tinnitus and reduce stress.

Cognitive behavioural therapy aims to alleviate distress and produce adaptation to some conditions. Your GP should be able to refer you to the necessary specialist, usually an ear/nose/throat specialist.

There are practical steps you can take to lessen many hearing problems: • Avoid noisy environments where possible • Tell others of your difficulty • Use gentle music to cover constant noise caused by tinnitus • Try to sleep well and avoid stressful situations • Cut down on salt if your problem involves fluid pressure in the ear • Stop using drugs such as coffee, cigarettes and alcohol.

This is just one of the hundreds of useful fact sheets available on the Synapse website at www.synapse.org.au

Locked-in syndrome

The worst imaginable communication disorder is also thankfully one of the rarest. Locked-in syndrome is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for the eyes.

Locked-in syndrome usually results in quadriplegia and the inability to speak in otherwise cognitively intact individuals. Those with locked-in syndrome may be able to communicate with others through coded messages by blinking or moving their eyes, which are often not affected by the paralysis.

Unlike most types of brain injury which involve the upper portions of the brain, locked-in syndrome is caused by damage to specific portions of the lower brain and brainstem, with no damage to the upper brain.

Patients who have locked-in syndrome are conscious and aware, with no loss of cognitive function. They can sometimes retain proprioception and sensation throughout their bodies. Some patients may have the ability to move certain facial muscles, and most often some or all of the extraocular eye muscles.

Individuals with the syndrome lack coordination between breathing and voice. This restricts them from producing voluntary sounds, though the vocal cords are not paralysed.

Assistive computer interface technologies, such as Dasher, combined with eye tracking, may be used to help patients communicate. New direct brain interface mechanisms may provide future remedies; one effort in 2002 allowed a fully locked-in patient to answer yes-or-no questions. Some scientists have reported that they have developed a technique that allows locked-in patients to communicate via sniffing.

Adapted from Wikipedia under the GNU Free Documentation Licence

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From the inside People using facilitated communication must be supported, not scrutinised, writes Marlena Katene

Albert Einstein once said “If you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

I wonder what it would be like to live in a world where we could not express what it is we desire in any given situation? We would wake up and our days would be predetermined by either some well meaning family member or possibly even a carer that has no emotional connection to the very decisions they are making on our behalf. As someone who is non verbal, living in a verbal world, my biggest fear in life is that I will not be given the opportunities required to communicate in the many roles I choose within my community. I am, in fact, writing this article using Facilitated Communication.

While I can communicate independently, I can do so much faster and more efficiently with some support.

How would the general Australian public fare if they were instructed for one year that anything they spoke in the English language would not be recognized or acknowledged? I think frustration is a word that would come to the minds of many but for some they may even 15 / B R I D G E M A G A Z I N E

rise above this challenge and still find unique ways to convey what they wish to. Facilitated communication is still, in many respects, not acknowledged or respected even in a supposed forward-thinking country such as our own.

People are constantly fighting for the right just to prove intellectual ability.

Facilitated communication is one method for those of us that are non-verbal to contribute to what traditionally is a verbal world.

Communication could be argued as one of the most significant rights a human can have.

Whilst there are many others, that agencies such as the United Nations have come up with, without the right to an appropriate communication method, how is one able to express the fulfillment of these rights? With advancements in technology and revolutionary advocates those that are non-verbal now should be given the opportunity and support to ensure their thoughts and opinions be heard. They say that “knowledge is power” and for those who are non-verbal and require facilitation, it is vital that the way we communicate be acknowledged.

I am alarmed to hear that some academics

and even a disability advocacy organization have lead a campaign towards disproving the concept of this effective method for thousands of people worldwide. Validity will always be the excuse for not even implementing communication to start with. But are many ways to show authorship of facilitated communicated conversations.

Communication for some needs to be supported and developed according to what methods best suits the individual’s needs. As Australia is in the middle of social reform around disability issues, these issues also need to be addressed. What is required for access to communication to become available for all? As ABC 7.30 reports have mentioned (more than once), those using facilitated communication in the story had “the intellectual capacity of three-year-olds”. Without access to appropriate communication, I wonder how the testers came to this conclusion? I also wonder how Ms Anne MacDonald successfully won her case in the Supreme Court and the right to leave the institution she’d be incarcerated in, and went on to earn a university degree? As a university student myself, there are many people who ensure my work is actually my

MY OWN VOICE My name is Tim Chan, I am 17 years old with a Chinese Australian background. I like books, swimming, cycling, and roller-blading. I have moderately severe autism. I don’t have speech, and have a lot of mannerisms such as humming, flapping my hands, and lying on the floor when I get too stressed out.

Unlike many nonverbal people with autism, I do and can communicate using typing with some support.

This mode of communication is called Augmentative and Alternative Communication (AAC) and typing with another person’s hand on my arm is called Facilitated Communication (FC).

Most neurotypicals (a general term for people without autism) have little trouble with their body, and the intention to do something is translated into the necessary actions to achieve the goal. On the other hand, we autistics cannot rely on our bodies to carry out our intentions. If I want to say something, no word comes out. This is also the case with hand movements, like writing.

Most of my time at school has been spent on trying to see the meaning of what people do and how to incorporate the routines into some understandable sequence. With no speech and no independent means of communicating, I constantly feel left-out, isolated and freakish in an alien world.

The main problem, though, is the way people judge me at first sight. I make sounds, not voluntarily, but squeals and hums when my anxiety is getting on top of me. In unfamiliar situations, I don’t cope well, because I don’t know what to expect. When I get overwhelmed, I do repetitive things like look at spinning objects to calm myself down.

In the absence of speech and behaviour that signals a request for attention, such as eye contact, gestures and smiling, the need of AAC users to communicate often get overlooked. Our means to communicate are also severely restricted.

Our success at communication very much depends on people’s willingness to accept us and believe in us as individuals with legitimate, albeit complex needs. The positive mindset of others is crucial, and termed ‘presumption of competence’, this attitude is what makes or breaks us in communicative situations.

When my attempts to use AAC were initially thwarted in mainstream high school, my frustration and anger mounted. I withdrew into myself and gave up trying to blend in. In despair I would sometimes act out my frustration. I threw things, hit out even and ran away from the Aides. I hated myself for doing these things, yet was unable to stop because of my intense frustration.

After a concerted effort from mum with the help of our advocates to negotiate with the school for using FC, and for inclusion, the process to enable me to communicate lurched forward. I first started to type with an Aide in Year 9. I was able to type short sentences in response to questions, and finally convinced the school that I had brains. Things started to change for me, I felt a level of acceptance, not only from the Aides and my teachers but also from the other students. I began to look forward to school.

I’d like to do law at University and to get work as an advocate for people with a disability. To aim high is the first step towards a life that is fulfilling. I am also hoping to get to independence with typing.

With FC I can take part in things which are meaningful and live a richer life. I object to anyone or any organisation that tries to take away this basic right, the right of a person to make decisions and to seek to relate to others.

This article by Tim Chan featured on the Ramp Up website at www.abc.net.au/rampup on the 19th March 2012. Tim is a Melbourne student who uses both Facilitated Communication and Augmentative and Alternative Communication. work. I too have been tested on many occasions by people who have no experience in facilitated communication at all; they do not just hand out degrees. Validity and integrity is at the forefront of any good university degree.

What I do have is people that are initially intrigued and curious as to my methods, not 100% believers themselves. These perceptions can be changed though and all people that have come in with an open mind have left learning a new skill in communication.

It is important to have people who believe in alternate communication methods. They do not have to understand it or even be proficient in it as there are many people that are in Australia.

Sometimes we fear what it is we do not know.

If we push through and address this we might come up with a solution. I believe everyone can communicate regardless of societal perceptions.

Are we afraid to see what some people (that

have been labeled as having capacity of threeyear-olds) actually have to say? I started my article with a quote and it is true; we judge. It is human nature, but if we give the people the tools to communicate then we can see them for who they really are and who they wish to be. Communication is our biggest right and no one should say who, what, when or where this happens for those of us that are non-verbal and may require a facilitated partner to achieve this.

My hope is people just be given the chance and the only way is to allow them to communicate in what ever way is appropriate for them.

This article by Marlena Katene featured on the Ramp Up website at www.abc.net.au/rampup on 15 March 2012.

Marlena Katene is a 21-year-old small business owner, motivational speaker and journalism student. Currently she uses communication devices and facilitated communication to assist her to study journalism and build an extensive portfolio interviewing a wide range of people.

Augmentative communication Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language. AAC is used by those with a wide range of speech and language impairments, including congenital impairments such as cerebral palsy, intellectual impairment and autism, and acquired conditions such as amyotrophic lateral sclerosis and Parkinson’s disease.

Modern use of AAC began in the 1950s with systems for those who had lost the ability to speak following surgical procedures. During the 1960s and 1970s, the use of manual sign language and then graphic symbol communication grew greatly. It was not until the 1980s that AAC began to emerge as a field in its own right. Rapid progress in technology, including microcomputers and speech synthesis, have paved the way for communication devices with speech output and multiple options for access to communication for those with physical disabilities.

AAC systems are diverse: unaided communication uses no equipment and includes signing and body language, while aided approaches use external tools and range from pictures and communication boards to speech generating devices. The symbols used in AAC include gestures, photographs, pictures, line drawings, letters and words, which can be used alone or in combination. Body parts, pointers, adapted mice, or eye tracking can be used to select target symbols directly, and switch access scanning is often used for indirect selection. Message generation is generally much slower than spoken communication, and as a result rate enhancement techniques may be used to reduce the number of selections required.

These techniques include “prediction”, in which the user is offered guesses of the word/phrase being composed, and “encoding”, in which longer messages are retrieved using a pre-stored code.

The evaluation of a user’s abilities and requirements for AAC will include the individual’s motor, visual, cognitive, language and communication strengths and weaknesses. The evaluation requires the input of family members, particularly for early intervention.

Respecting ethnicity and family beliefs are key to a family-centered and ethnically competent approach.

Studies show that AAC use does not impede the development of speech, and may result in a modest increase in speech production. Users who have grown up with AAC report satisfying relationships and life activities; however, they may have poor literacy and are unlikely to be in employment.

Reproduced from a Wikipedia article under the Creative Commons Licence.

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Living with cerebral palsy

Robert looks at communication issues and a new innovation transforming his life My name is Robert. I was born with a form of cerebral palsy (CP) known as spastic quadriplegia, and I also have some athetoid movements. I have very little functional use of my arms and legs and although I can make some vocalisations, my speech is pretty well unintelligible. I have been communicating in ways other than speech, since the earliest of 17 / B R I D G E M A G A Z I N E

ages. Recently though there has been a revolution, called eye gaze. It has literally revolutionised my life, and that of many others with a similar level of physical disability to me.

I’m 48, so the revolution has taken some time in coming, but I am just glad it got here. I learnt to read when I was 9 or 10 and at that time I was given a board with printed letters and words on it, so I could

spell out my message. I couldn’t point to the board, so I used a headpointer, which is best described as a rod attached to a headband – very low tech and of limited effectiveness. It was uncomfortable, it gave me headaches, and it fell over my eyes, making it hard to see. But I relied on that headpointer almost completely to communicate, up until very recently.

WHAT IS CEREBRAL PALSY? Cerebral palsy is a disability involving permanent movement problems that do not get worse over time.

There may also be problems with sensation, depth perception, and communication ability. Cerebral palsy is caused by injury to the centres for controlling our movement. This occurs when the brain is developing e.g. during pregnancy, childbirth, or up to three years of age. There may be a genetic cause in a small number of cases. Cerebral palsy is not an infectious disease and is not contagious. There is no cure, with efforts attempting to treat and prevent complications. It occurs in about 0.2% of births.

Speech-generating devices I enjoy expressing myself in the written form, but it has always been so difficult to do this I had all but given up in frustration, if this were possible. The drive to communicate your inner most thoughts is a powerful one though, so I didn’t give up. Using the headpointer made communication so slow, that I was forced to use key words a lot of the time, and this gave the impression to some that I didn’t have the ability to express myself well, and that I may have an intellectual impairment of some sort. Speechgenerating devices (SGD) helped do away with this misconception to a certain degree, and I was able to communicate faster, using some of the rate enhancement features built into the devices. Things like word prediction and the use of abbreviations did help. The technology of these speech-generating devices improved over the next fifteen years, but my most effective means of interacting with these devices continued to be the headpointer.

The struggle to communicate CP is not a progressive disorder, however I found myself losing some of my functional abilities as I got older. The amount of the SGD screen that I could access got smaller, and my endurance and accuracy also decreased. I was getting headaches and neck aches whenever I was attempting to communicate. I’ve always considered myself to be shy, but I’ve realised that a component of this relates to my anxiety about going up and attempting to talk to people, when the method of talking has been so painfully slow and difficult.

The development of eye gaze technology has been transformative. It has changed how people perceive me, how they interact with me, how well they know me. I haven’t actually changed. I always had the ability and the desire to communicate the things I am now communicating. I find that my perception of myself is also changing. I no longer see myself as being so shy. I am giving presentations to others, and even considering doing stand up comedy. A whole range of new possibilities are presenting themselves to me.

person’s eyes to be made in real time. The eyes are used to navigate on the screen, moving the cursor much like a mouse does, and to also select on the screen. This form of selection is known as a ‘dwell click’, where the person stares at the target for a specified duration until an activation occurs. It provides handsfree control. The tracker works regardless of surrounding light conditions, eye colour, eye wear or contact lenses.

The trial process I underwent for an eye gaze speech-generating device involved a speech pathologist and an occupational therapist. The involvement of both of these professionals ensured that the most suitable equipment was selected, and it is a requirement of the main funding body in Queensland, the Medical Aides Subsidy Scheme (MASS) that both professionals are consulted. The subsidy provided by MASS covered the majority of the $24,000 cost of the equipment – however the level of funding provided is reviewed on a month-by-month basis.

One of my favourite movies is ‘My left foot’.

It is about a man with cerebral palsy who learns to do everything with his left foot. He is like me really, except I have had to learn to use my head and now my eyes for everything. I can now talk to whoever I need to, whenever I need to.

The CPL (Cerebral Palsy League) is a non-profit organisation providing vital support and services in Queensland and Northern NSW. CPL provides clients with freedom of choice and the opportunity to chase passions. Call 07 3637 6350 or visit www.cpl.org.au

Music therapy

Music is one of the few activities that involve using the whole brain – an important tool in brain injury recovery! Music affects our arousal levels by raising or lowering heart rate, breathing and blood pressure.

Neurons involved in singing and speech partially overlap in the brain. Singing can be used to regain speech skills.

Music has a significant effect on our emotions.

Listening to favoured music can reduce cortisol – a stress-related hormone in the body. Music can also release endorphins to counteract pain. It also activates the motor system of the brain at a subconscious level – priming our muscles and making movement easier. Use music with your physio exercises, and also to have a positive effect on sleep by regulating the nervous system.

There is no “music area” of the brain. Music engages networks used for similar non-musical functions. A music therapist uses targeted techniques to regain brain functions that have been damaged. Music can provide enjoyment!

You can also find a Registered Music Therapist in your area via the Australian Music Therapy Association www.austmta.org.au At NMTSB we are Registered Music Therapists’ with extra training in Neurologic Music Therapy. We run individual sessions to meet non-musical goals all over Brisbane. For more information: www.nmtsb.com or to enquire about trialling music therapy: info@nmtsb.com

The eye gaze revolution What is eye gaze? Eye gaze provides an effective method of pointing. It is now possible for accurate calculations of the position of a 18 / B R I D G E M A G A Z I N E

Emotional lability An inability to control our emotions can have a serious impact on communication

Acquired Brain Injury can change parts of the brain that regulate or control emotional behaviour and feelings.

Emotional lability refers to rapid, often exaggerated changes in mood, where strong emotions or feelings (uncontrollable laughing or crying, or heightened irritability or temper) occur. These very strong emotions are sometimes expressed in a way that is not related to the person’s emotional state.

WHAT CAUSES EMOTIONAL LABILITY? Emotional lability occurs because of damage to parts of the brain that control: • Awareness of emotions (ours and others) • Ability to control how emotions are expressed.

When a person is emotionally labile, emotions can be out of proportion to the situation or environment the person is in. For example, a person may cry even when they are not unhappy – they may cry just in response to strong emotions or feelings, or it may happen “out of the blue” without warning.

A person may have little control over the expression of these strong emotions, and they may not be connected to any specific event or person.

Following a brain injury, an individual may also lose emotional awareness and sensitivity to their own and other’s emotions, and therefore their capacity to control their emotional behaviour may also be reduced. They may overreact to people or events around them – conversations about particular topics, sad or 19 / B R I D G E M A G A Z I N E

funny movies or stories.

Weaker emotional control and lower frustration tolerance, particularly with fatigue and stress, can also result in more extreme changes in emotional responses.

The person may express their emotions in situations where previously they would have been able to been restrained or in control (in quiet situations, in church, listening to a concert).

These behaviours can be confusing, embarrassing, and difficult to understand for the person with brain injury and for others.

and try to avoid these when you can. Triggers can include: • excessive fatigue or tiredness • stress, worry or anxiety • high stimulation (too demanding, too noisy, too many people) is too much pressure • strong emotions or demands from others • very sad or funny situation (such as jokes, movies, certain stories or books) • discussing certain topics e.g. driving, loss of job, relationships, death of a family member • speaking on the telephone or in front of a group or where a person feels under pressure.

EMOTIONAL RESPONSES POST- INJURY Emotional reactions may be appropriate in the situation, but the behaviour or expression may be stronger, louder or last longer than would be usual for that person. For example, a person may be genuinely happy, but once the laughter has started they may be unable to stop or regulate the behaviour, laughing too loud, too much, or for too long.

After a brain injury, an individual may also show extreme but genuine emotional responses, including sadness and grief, despair, frustration and irritability, anger, anxiety and depression, and even joy, happiness, and pleasure. These may be appropriate and normal emotional responses.

Have a break Have a short break away from the situation so the person can regain control of emotions, and to give the opportunity for emotions to settle. Sometimes a break of a few minutes or a longer period is enough to regain control of emotions – taking a short walk, doing a different activity – all can help to cope with these strong emotions.

COPING WITH EMOTIONAL LABILITY Become aware of triggers Be aware of triggers for emotional lability

Ignore the behaviour Try to ignore the emotional lability as much as is possible. Try to get others to ignore it too, and continue on with the conversation or task.

Focussing on the lability or giving the person too much attention when it is happening can reinforce and increase the problem. It is important that other people don’t laugh too, as this will also reinforce and increase the behaviour.

Slurred speech?

Here are some strategies to use to make your speech clearer if you have slurred speech: Slow down, and over-exaggerate the individual speech sounds (think about opening your mouth wider). You may think this sounds strange to you but to your listener it will make it easier for them to understand what you are saying.

Insert little gaps between each word and pause at the end of sentences. This can help as it stops your words from running together. Check that your listener has understood you.

Focus on putting some intonation into your voice.

Intonation is what gives a voice that sing-song quality. Your speech will be more difficult to understand when you are tired. Try to avoid talking excessively when you are particularly tired! © The State of Queensland (Queensland Health) 2008 Acquired Brain Injury Outreach Service PO Box 6053 Buranda 4102

Change the topic or task Changing the topic or activity (redirection and distraction) can reduce stimulation or stress (particularly if the topic was a trigger).

Try to distract or divert the person’s attention by engaging them in a different activity or task.

Provide information and education Uncontrolled crying or laughing can be upsetting, frightening or confusing for other people if they don’t understand. Provide simple explanations or information to other people about the lability, for example, “I cry a lot since I had my stroke. . . don’t worry about it” or “Sometimes when I am nervous I get the giggles”. Tell people what they should do, for example “Just ignore me and it will stop” Plan ahead When there is severe emotional lability, oneto-one, brief and fun activities in a quiet environment will be better. Try to avoid putting the person in stressful situations or environments e.g. noisy, busy, high levels of activity or that are too demanding.

Plan activities that are within the person’s ability, and plan more demanding activities or appointments after rests, or when the person has the most energy. Plan for rests between activities.

Use cognitive techniques Some simple cognitive strategies can also assist in managing emotional lability: • Relaxation and breathing exercises to reduce tension and stress

• Use distractions e.g. think of something else, imagine a peaceful image or picture • Do an activity (going for a walk) • Cognitive and behavioural strategies such as thought-stopping could be discussed with a psychologist.

Counselling and support Sometimes a person has had many losses and changes to cope with after the brain injury – loss of work, ability to drive, independence, changes in relationships or finances, and changes in the quality of their life. All these changes happen quite suddenly with little chance to prepare or get ready.

These feelings of sadness, grief, anger, frustration, disappointment, jealousy, or depression after an injury are common and may be very difficult to cope with.

If there are other emotional adjustment and coping issues, referral to a counsellor such as a psychologist, social worker or psychiatrist may be helpful. Families, friends or carers may also benefit from support and care to help them understand and to cope with these changes.

This is fact sheet is reproduced with the permission of ABIOS (Acquired Brain Injury Outreach Service). Visit www.health.qld.gov.au/abios/ to see their full range of fact sheets. ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with Acquired Brain Injury (ABI) and their families.

Making sure you are understood Here are some strategies to use to make sure you are understood by someone with a communication disorder.

Use short concise speech. Sometimes this means summarising a large amount of information you have already said.

Check that your listener has understood you. For example, ask the listener to summarise what you have just said.

Use gestures, facial expression, body language etc to augment your speech. Using gestures or pointing to an object you are talking about, or using different facial expressions or body language – all can help get your meaning across.

Writing down important information in dotpoint form can sometimes be easiest for your communication partner!

If your listener has not understood you, try to say it again in a different way. Your listener might not have understood the exact words you have used.

Try to repeat what you have said but using simpler language and/ or words. © The State of Queensland (Queensland Health) 2008 Acquired Brain Injury Outreach Service

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Speaking in tongues Foreign accent syndrome is a rare medical condition in which patients develop what appears to be a foreign accent. Foreign accent syndrome usually results from a stroke, but can also develop from head trauma, migraines or developmental problems.

Although popular news articles commonly attempt to identify the closest regional accent, speakers suffering from foreign accent syndrome acquire neither a specific foreign accent nor any additional fluency in a foreign language.

Despite an unconfirmed news report in 2010 that a Croatian speaker has gained the ability to speak fluent German after emergence from a coma, there has been no verified case where a patient’s foreign language skills have improved after a brain injury.

There have been a few reported cases of children and siblings picking up the new accent from someone with foreign accent syndrome.

To the untrained ear, those with the syndrome sound as though they speak their native languages with a foreign accent; for example, an American native speaker of English might sound as though he spoke with a south-eastern English accent, or a native English speaker might speak with a New York American accent.

However, researchers at Oxford University have found that certain, specific parts of the brain were injured in some foreign accent syndrome cases, indicating that certain parts of the brain control various linguistic functions, and damage could result in altered pitch or mispronounced syllables, causing speech patterns to be distorted in a non-specific manner.

Contrary to popular beliefs that individuals with foreign accent syndrome exhibit their accent without any effort, these individuals feel as if they are suffering from a speech disorder. More recently, there is mounting evidence that the cerebellum, which controls motor function, may be crucially involved in some cases of foreign accent syndrome, reinforcing the notion that speech pattern alteration is mechanical, and thus non-specific.

The condition was first described in 1907 by the French neurologist Pierre Marie, and another early case was reported in a Czech study in 1919.

Other well-known cases of the syndrome have included one that occurred in Norway in 1941 after a young woman, Astrid L., suffered a head injury from shrapnel during an air-raid. After apparently recovering from the injury, she was left with what sounded like a strong German accent and was shunned by her fellow Norwegians.

Adapted from Wikipedia under the GNU Free Documentation Licence

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How a brain injury can affect family members For most family members, life is not the same after a brain injury. We want you to know that you are not alone in what you are feeling. Other people who have family members with a brain injury may be having the same problems that you do. While everyone’s situation is a bit different, there are some common problems that many family members experience.

Less time for yourself Since the injury, you have likely had very little time for yourself to relax or do the things you enjoy. Much of your energy has probably gone into taking care of your family member.

You probably feel tired constantly, but can’t get any rest.

Financial difficulties If your family member has not been able to return to work, you may have less money to support your household. You also probably have a lot of medical bills piling up. People also have difficulty applying for and getting disability income.

Role changes People in your family probably no longer have the same roles. In other words, the same people don’t necessarily have the same responsibilities they did before. For example, someone who stayed home to take care of the house before injury may now have to work. Someone who worked before may have to stay home to take care of the person with injury. There may not

be enough people to help with chores, grocery shopping etc.

Problems with communication People in your family may not talk to each other as well as they did before injury. They may seem to have trouble talking about their feelings. Things may be so busy that you just don’t have much time to spend with other family members. It may seem that the family only gets together to solve the next problem, and not to just enjoy being together.

Lack of support from others Soon after the injury, you probably got a lot of help from other people. As time went on, the amount of help you received may have become less. Other family members and friends may come around less. They may not seem to understand what you’re going through. They may not understand some of the changes in your injured family member. People may seem to be critical of the way you’re handling things.

They may give you a lot of advice that isn’t really helpful.

These are just some of the problems that family members may face after injury. Your family may be facing other problems that we haven’t talked about. Sometimes these problems can seem too much and you may become overwhelmed, not seeing any way out. Other people in your situation experience similar feelings. Here is a list of some common feelings that family members report.

Strategies for communication problems

Feeling sad or down Many family members report that they feel down a lot – sometimes, they are not sure why.

They may not enjoy the things they used to.

They may have a lot less energy. They may sleep too much or not be able to sleep at all. Some people cry more easily. They may start spending a lot of time alone, preferring not to be with other people.

Feeling anxious or nervous Some family members report being nervous all the time. They may worry about something all the time. Some common things that people worry about are finances, the future, and the health and wellbeing of their injured family member. Other people may feel nervous all the time, without being sure why.

Feeling angry You may be surprised to learn that many family members feel angry after the injury. They may be angry at many different people. Some feel angry at doctors or other professionals who they don’t think are providing enough care.

Others feel angry at other family members or at friends who give advice but don’t seem to understand what they’re going through.

Still others are angry at their injured family member for not trying hard enough, or for not appreciating what is being done to help them. Some people are just angry at the world, questioning why this terrible thing has happened to them.

Feeling guilty Guilt is a common feeling that family members have after the injury. Some family members blame themselves for the injury, thinking that they somehow could have prevented it. Others feel guilty that they cannot keep up with the things that need to be done from day to day. Some family members feel guilty about the anger they feel – they tell themselves they should be glad their loved one is alive, and they don’t feel they have a right to be angry. Others feel that the injury is a punishment for something they did in the past.

Feeling frustrated Frustration is a very common feeling among family members. There are lots of things to be frustrated about. Some of the things that most frustrate people are: not being able to get the services they need; not having enough time to do things; feeling that others don’t understand what they’re going through; dealing with the fact that their loved one cannot do the same things they did before.

This excerpt from “Picking up the pieces after TBI: a guide for family members” is reproduced with permission of Angelle M. Sander, Ph.D., with Baylor College of Medicine and TIRR Memorial Hermann. This free publication is available for download from www.tbicommunity.org or www.brainline.org. The work was funded by Grant No. H133B03117 from the National Institute on Disability and Rehabilitation.to TIRR Memorial Hermann.

Here are some useful strategies to use with someone who has cognitive-communication deficits.

Use short concise speech. Use word-finding strategies as necessary. Write down important information. Using a “communication book” is a useful way of keeping all important messages in one place.

When someone is constantly talking over other people, interrupting, talking on and on, goes off the topic of conversation: • Gently interrupt them “I am interested in hearing about your ___ at the end of the class, but since we are on a time limit we need to keep going on this...”

• Tell the person that they seem to go off topic at times. Ask how they would like you to handle the situation.

• Use a talking “prop” (e.g. the talking stick, ball etc) so that only when you have the prop can someone talk.

If the person continues to go off topic, interrupt them and bring them back to topic or write the topic down in front of them on paper to refer to. © The State of Queensland (Queensland Health) Acquired Brain Injury Outreach Service

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Speech pathology

According to the Oxford dictionary, communication involves the imparting or exchanging of information by speaking, writing, or using some other medium. The origin of the word comes from Latin ‘communicatio’ meaning to share.

Whilst this seems a simple definition, how we communicate with each other can be a very complex process. Communication requires an intricate interplay between cognition, language

and speech. Communication can be verbal or nonverbal, and incorporates listening, speaking, gesturing, reading and writing. Cognition includes abilities such as attention, perception, memory, organisation and executive function (reasoning, problem solving, planning).

We call this cognitive communication as it involves the interaction between language and cognition. An impairment of language may disrupt one or more cognitive processes,

BRAIN INJURY & COGNITIVE COMMUNICATION The effects of brain injury on communication skills may be subtle. Speech and language skills may seem unaffected, but a person may still not communicate in the same way as before their injury. They may speak the right words, and understand what is being said, but their interactions might just seem a bit off, or not quite the same as it used to be.

This occurs because the behaviours that accompany communication may be altered from the usual behaviours of that person - behaviours that may be considered inappropriate in social situations (eg, too much talking, not enough talking, overtly rude or blunt responses).

What does this mean for a brain injured person? A common outcome of impaired cognitive communication is difficulties adjusting to social expectations and demands. Social adjustment is often a significant obstacle for successful community reintegration for those with a brain injury, as inappropriate behaviours have the potential to disrupt social interactions. This of course can lead to social isolation, which is a significant life change for an individual with a brain injury. A decrease in the number and depth of social relationships over time has been documented by researchers as a long-term problem for persons with traumatic brain injury. There has been evidence of deterioration in the ability to maintain pre-injury marital relationships and friendships, as well as difficulty in forming new social relationships and effective working relationships.

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and similarly, an impairment of one or more cognitive processes may disrupt language.

Cognitive communication behaviours There are many behaviours that accompany the use of language in social contexts. Essential behaviours include starting and maintaining conversations, eye contact, personal space, listening, facial expressions and verbal organisation. Speech pathologists work with people with a brain injury to address any changes to the following areas that impact on their ability to communicate with others: • Cognition: attention, concentration, ‘memory failures’, distractibility, speed of processing, confusion, perseveration (repeating the same sounds or words), impulsiveness, language processing, executive function.

• Speech and language: difficulty understanding spoken word, difficulty speaking and being understood, slurred speech, speaking very fast or very slow speech, problems reading, problems writing, words being related, but off target (dolphin instead of shark; or sharp instead of shark).

• Perceptual: disturbance of integrating sensory impressions into psychologically meaningful data.

• Vision: partial or total loss of vision, weakness of eye muscles and double vision, blurred

vision, problems judging distance, involuntary eye movements, intolerance of light.

• Hearing: decrease or loss of hearing, ringing in the ears, increased sensitivity to sounds.

• Social/Emotional: dependent behaviours, decreased emotional ability, lack of motivation, irritability, aggression, depression, disinhibition, denial/lack of awareness.

Intervention and rehabilitation for cognitive communication is most effective with a dynamic approach. Therapy may commence as clinic -based formal exercises, however will gain most ‘real life’ meaning with functional, communitybased therapy. This may include working with a person at school, TAFE, university or the workplace; helping them to commence and manage volunteer work; or connecting with the community through service exchanges like shopping, medical appointments, or meeting up with friends, etc. It can also include using social media, telephone and Skype mediums.

It’s also important to work with the communication partners of a person with a brain injury. Much research has been conducted into the efficacy of educating, training and supporting family, friends, caregivers and employers/colleagues in how to successfully communicate with a person with an acquired brain injury to ensure successful communication exchanges in all settings of life.

Strategies for coping Some strategies to assist with cognitive communication difficulties include: • Remember the injured person is often unable to differentiate between appropriate and inappropriate behaviours. They are not trying to be ‘difficult’.

• Avoid nagging and harassing the person.

It is important to be consistent but not demeaning, especially in social situations.

• Devise some cues/hand signals with the person to alert them to an inappropriate behaviour. This minimises the need for obvious corrections in public settings.

• Openly discuss with the person regarding the process of restoring their communication behaviours. This helps to redirect frustration to focus on their goals.

• Working with the person to develop scripts before going to purchase something, or to prepare questions before an appointment can provide some planning, predictability and confidence in social interactions. It can also provide opportunities to predict, plan and problem solve any potential problems before they arise.

Speech pathologists work with people with brain injury on many different levels, including addressing changes to swallow function, voice

sounds, fluency and stuttering, speech and language. Certainly one of most challenging areas, and also one of the most rewarding areas of work is in cognitive communication. Being able to assist people to reconnect with their family, friends, and community is exceptionally rewarding. Assisting people to finish their schooling or higher education, and/or returning to their previous jobs, or commencing new jobs, is also extremely rewarding and a key highlight to the months and years of hard work that these individuals invest. But by far the most rewarding aspect would be giving people the knowledge and skills to effectively build their social networks and feel a sense of purpose in their life again.

For more information on cognitive communication, and any aspect of speech pathology and Acquired Brain Injury, visit their website at www.redsoup.com.au or call Rebekah Dewberry on 07 3162 9147. The Red Soup Speech Pathology clinic is situated in Annerley, Brisbane, if Queensland readers are looking for a speech pathologist.

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Telehealth services

Accessing brain injury support via the Internet

by Rachael Rietdijk, Leanne Togher, Emma Power and Melissa Brunner Speech Pathology, Faculty of Health Sciences, The University of Sydney

For many people, technology is changing the way they carry out daily life. It is now possible to do your banking, shopping and keep in touch with family and friends online, without needing to leave home. Health services are also starting to consider how technology could be applied to how care and support is provided to patients and their families. “Telehealth� looks at how technology could be used to deliver health services over a distance.

Telehealth offers the potential advantages of convenience and increased access to services, however it is unknown whether telehealth is as good as face-to-face services, and there are concerns about security of health information being transmitted over the Internet. Researchers are still investigating the best ways of using telehealth to provide support after a brain injury, and whether telehealth is as good as a face-to-face service.

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Face-to-face vs Skype appointments Our team is currently looking at using telehealth to work with people who have acquired a brain injury, and their families, on social communication skills. In our first study, we have compared face-to-face home visits versus Skype telehealth sessions for meeting with families. Skype is a program that creates a video-based connection between people in two separate locations over the Internet, so that both are able to see and talk to each other.

Alternative videoconferencing applications are also available which work in a similar way (e.g.

Scopia, Facetime).

Twenty families have participated in this study so far. This study has provided some information about how feasible it is to use videoconferencing to meet with families, as well as families’ opinions on using videoconferencing for brain injury services.

What is it like to use videoconferencing?

For most of the families participating in our study, the experience of talking to someone over videoconferencing was a new one. People who were new to using Skype did report feeling apprehensive before the session, but generally found that the experience was better than they expected. There can be some technical problems that affect the quality of the conversation from time to time. 36% of our Skype sessions had a drop out in the connection and 21% of the sessions had significant problems in the audio or video quality of the conversation. Although the sessions did not always run smoothly, we were still able to complete the assessments tasks and questionnaires remotely with all of the families, using the telephone at times to supplement the Skype connection.

Positive side of videoconferencing After completing the Skype session, the families reflected on whether videoconferencing

WHAT IS SKYPE? Skype is software that specialises in providing video chat and voice calls between computers, tablets and mobile devices via the Internet and calls to other devices such as telephones and smartphones. Apart from calls where people can talk and see each other, Skype can also be used to send instant messages, exchange files and images, send video messages and create conference calls.

Skype software can be used with Microsoft Windows, Mac or Linux, as well as Android, Blackberry, iOS and Windows Phone smartphones and tablets.

Skype allows users to communicate by voice using a microphone, video by using a webcam, and instant messaging over the Internet. Skype-to-Skype calls to other users are free of charge, while calls to landline telephones and mobile phones (over traditional telephone networks) are charged via a debitbased user account system called Skype Credit. Skype has the ability to provide much cheaper ways to stay in contact with others, and the added bonus of being able to see the other person. may or may not be helpful as part of brain injury rehabilitation.

Some families reported potential positive aspects of using videoconferencing: • Might be able to have contact with brain injury staff more frequently • Less time required to prepare for and travel to appointments • Brain injury staff are able to observe the person with a brain injury doing activities at home without the need to travel • Use of technology may make rehabilitation more appealing for some people • Contacting brain injury staff using videoconferencing for support and problem solving when you need it, might feel more “normal” than traditional therapist-directed approaches • Could be useful for families who find it upsetting or embarrassing to return to the hospital / brain injury service for outpatient appointments, or who feel that home visits from brain injury staff are an invasion of privacy • Easier for people who find it difficult to get around after acquiring a brain injury • Learning to use videoconferencing could give people with a brain injury another way of keeping in contact with family or friends.

Negative side of videoconferencing Some families reported potential negative aspects of using videoconferencing: • Can feel less personal • Non-verbal communication may be more difficult to read • Conversation can be disrupted by technical problems • Brain injury staff might miss some important information • Patient might be distracted by other things at home • Could be difficult for brain injury staff to motivate people over videoconferencing • May be more difficult to keep discussions with brain injury staff private from others in the household who will overhear the videoconferencing call

7 tips to rebuild social skills

• May be difficult to implement therapies involving physical procedures or resources • Can be difficult for families who are not comfortable with using technology • Can take time to set up and learn to use initially • Families and patients miss out on the social contact provided by attending appointments at the brain injury service / hospital.

The potential uses of videoconferencing identified by families were: • A supplement to face-to-face services to allow more frequent contact • A way of continuing to access support when needed as therapy becomes less intensive • A way of accessing expert brain injury advice if not available in local area • A way of connecting with peers with brain injury or other family members.

What are the next steps for telehealth?

Currently, your local brain injury service may or may not offer telehealth services depending on its policies. To help brain injury services continue to make decisions about how telehealth could be used, more research is needed comparing telehealth with face-to-face services. Telehealth will not be suitable for all families, and so it will also be important to work out which kind of families telehealth will work best for.

In terms of our team’s research, we will continue investigating whether telehealth is helpful for improving social communication skills. We are looking for families to participate in Skype-based communication training to help us find out whether it would be a helpful way of working with families.

Interested in finding out more about volunteering for this research? Please contact Rachael Rietdijk on 0402 159 516 or email rman7827@uni.sydney.edu.au This research is supported by funding from the Institute for Safety Compensation and Recovery Research, an Australian Postgraduate Award and an NHMRC CRE in Brain Recovery (Moving Ahead) Seed Grant.

Communication is critical to keeping relationships with our family and friends healthy, and establishing new friendships. The good news is that if your communication abilities were affected by a brain injury you can relearn many of these skills. Here are a few hot tips.

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 – or at least not for too long!

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 as it may be difficult for you to detect.

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

Get feedback from someone you trust. 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 from friends or family members you trust.

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Neglecting neuroscience has criminal consequences for youth Nathan Hughes says more needs to be done about imprisoned youth with neurodevelopmental disorders

Incarcerated young people have high rates of neurodevelopmental disorders. A recent international review of research found estimates of the rate of learning disability among young people in custody range from 23% to 32%, compared to 2-4% among the general population.

experienced as one or more clinically defined disorders, such as intellectual or learning disability, specific learning disorders, communication disorders, ADHD, and autism.

So how might increased rates of custodial intervention be explained? At least three sets of explanations need to be considered.

Similarly, 60-90% of young people in custody have been assessed as having a communication disorder, compared to 5-7% of all young people.

The same patterns exist for attention deficit hyperactivity disorder (ADHD) and autism. What’s more, these are likely to be underestimates of levels of need. Many young people in custody are affected by particular symptoms or sub-clinical levels of impairment.

Clearly, to reduce the numbers in custody, we need to understand how a broad range of disorders affects them.

Childhood neurodevelopmental impairments are physical, mental or sensory functional difficulties caused by disruption in the development of the brain or the rest of the nervous system. They are typically the result of a complex mix of influences. These include: genetics; pre-birth or birth trauma; infection, illness or injury in childhood; or nutritional, educational or emotional deprivation.

The resulting difficulties include cognitive deficits, specific learning difficulties, communication difficulties, and emotional and behavioural problems. These are commonly

Disability discrimination & criminalisation The ways in which impairments may increase risks of antisocial behaviour or criminality are only part of the story. If we adopt a social

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model theory, we must also consider how social responses to neurodevelopmental impairment give rise to experiences of disability.

In particular, diagnosis (or lack of ) and classification determine the extent and nature of recognition and response to impairment.

This is key to a variety of experiences that can increase risk of offending.

For example, a failure to identify and respond to the learning needs of these young people may be the origin of disengagement from

COGNITIVE OR EMOTIONAL DEFICITS LEAD TO ANTISOCIAL BEHAVIOUR Neuroscience offers various explanations as to how cognitive and emotional traits that are symptomatic of neurodevelopmental impairment can give rise to aggressive or antisocial behaviour. This, in turn, increases vulnerability to criminality. For example: ADHD is characterised by various behavioural symptoms, including inattentiveness, hyperactivity and impulsivity. The latter is particularly implicated in antisocial behaviour through a “de-coupling� of cognition and emotion. This can result in impatience, sensation-seeking and difficulties in restraining emotional reactions. That increases the likelihood of impulsive acts, particularly in response to provocation or conflict.

Deficits in executive functioning are seen in a range of neurodevelopmental disorders. Executive functioning is an umbrella term to describe the cognitive processes used to undertake complex goaloriented thought and action. It includes the initiation, planning and sequencing of tasks, concentration and the self-regulation of contextually appropriate behaviour. Deficits in such functions influence antisocial behaviour by reducing inhibition or impairing the ability to anticipate consequences.

Communication impairments are linked with a range of neurodevelopmental disorders. A reduced capacity for effective social interaction can affect the selection of language and/or non-verbal communication appropriate to the social context. Poor social communication may also result in difficulties understanding and expressing emotions, or challenging behaviour as a means to communicate feelings.

INCREASED EXPOSURE TO SOCIAL AND ENVIRONMENTAL RISK Clearly, neurodevelopmental impairment may increase susceptibility to a range of negative social experiences that heighten risk of criminality. These include negative peer group influences; problematic parenting practices; and educational disengagement.

Deficits in social communication can affect peer relationships, leading to a heightened desire to be accepted. Young people with speech and language difficulties are approximately three times more likely to be “regular targets for victimisation” than young people in general. Similar findings have been made for young people with ADHD or a learning disability.

Parenting a child with a neurodevelopmental disorder can involve a range of challenges, particularly when it is undiagnosed or adequate support is lacking. This can inadvertently lead to parenting practices – such as less positive parenting or ineffective discipline – that increase the risk of problematic behaviour.

A potential association between early difficulties in engaging with education due to impairment and subsequent classroom misbehaviour is also apparent. Neurodevelopmental impairment can affect “school readiness”. For example, ADHD symptoms of hyperactivity and poor capacity for attention can inhibit early school engagement.

Difficulties in pre-school and early educational experiences have a cumulative effect. Difficulties prior to the age of eight lead to challenges in engaging with later stages of education. At this age problematic classroom behaviour particularly becomes apparent. education and problem behaviour. Without an appropriate awareness of impairment, behaviour in the classroom may be attributed to the wrong underlying cause. A cognitive or affective impairment may be misinterpreted as a behavioural problem and the child may attract inaccurate and inappropriate labels.

Such experiences are also apparent in the criminal justice system. This potentially leads to discrimination and criminalisation.

A lack of recognition of neurodevelopmental impairment and its impacts on behaviour can result in a failure to identify and appropriately support the young people in question. This may be through insufficient knowledge or training, lack of appropriate assessment, or limited specialist services.

Generic youth justice interventions often assume typical levels of verbal and cognitive competence. Those assumptions may be inappropriate for some young people with impairments. This can increase the risk of failure to complete an order, leading to a breach and return to court for further sentencing.

An impairment can also hinder a young person’s ability to understand and engage in an alien and confusing legal process. Specific terminology and conceptual language can be particularly difficult to understand.

Research has highlighted how difficulties in narrative language skills (the ability to “tell their story”) present considerable barriers in the context of forensic interviewing techniques applied in court or by police. This can lead to poor expressive vocabulary or narrative skills and poor eye contact and body language.

Such responses may be misinterpreted as behavioural and attitudinal, rather than due to communication difficulties.

Implications for youth justice practices Together this evidence suggests a widespread

failure to recognise and meet the needs of vulnerable young people. It calls for a radical rethinking of our approaches and of interventions intended to prevent offending.

In particular, the research evidence suggests the need to: • Develop generic policing and youth justice procedures, practices and interventions that do not assume cognitive and communicative competence or understanding of procedures, and support better engagement and access to justice for all young people; • Assess for specific functional difficulties that might help understand the basis of offending behaviour by adopting screening tools that criminal justice professionals can use; • Consider the therapeutic potential of youth justice interventions to address underlying cognitive difficulties and emotional needs, drawing on expertise in health and other services; and • Ultimately shift resources away from expensive custodial interventions and instead invest in family support, educational and health services.

By more quickly and effectively identifying and meeting the developmental needs of vulnerable youth, we can help prevent offending and re-offending.

The author, Nathan Hughes, is the Visiting Fellow at the Murdoch Children’s Research Institute, and Senior Lecturer in Social Policy and Social Work at University of Birmingham. His article was reprinted from “The Conversation” - an online source of news and views, sourced from the academic and research community and delivered direct to the public at https://theconversation.com

Trouble with finding a word?

Here are strategies to use when having difficulties thinking of words.

First, stop!

Try to describe it. What does it look like? For example, a ball is round and can be small or large.

What is it used for? For example, a fridge is used to keep food cool.

Where does it belong? For example, a plant belongs in the garden.

What group does it belong to? For example, an apple belongs to the group of fruit.

What words are associated with it? E.g. a rose is associated with daisies, tulips, daffodils etc.

What is a word with a similar meaning? E.g. ‘big’ is a similar word to ‘large’.

If you still can’t get the word, try to use a gesture to represent the word or try to draw it.

If you are still having trouble thinking of the word it is best to leave it and try again in a few minutes.

General Points to Remember Tell your communication partner what is going on!

Simply tell them: “I am having trouble thinking of the word” or “I’ll try and draw what I am trying to say” or “I can’t think of the word at the moment. Remind me in a few minutes time and I will come back to it.”

Try to relax. Becoming stressed and worried about being unable to think of the word will only make it harder for you to get it!

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Coping with legal processes

Successful legal action can result in the money you will need for rehabilitation and support, the process can be emotionally very difficult Court cases can be emotionally draining for people in the best of health, as your experiences, indeed your own character, may be questioned, challenged and criticised. This can be a devastating process when a brain injury has left you with fatigue, poor emotional control, susceptibility to stress, poor communication skills, and difficulty in thinking clearly. It is vital that you are prepared as much as possible and have plenty of support from loved ones for the rocky road ahead.

In court From the moment of my car accident, the police were involved. I was asked over and over what had occurred leading up to the accident. A year later, by some bizarre coincidence, I was to be a witness at the court case, and the thought of this distressed me dreadfully. I had not seen the driver of the vehicle since I was in hospital straight after the accident. I wasn’t sure what effect seeing the driver would have on me.

A note was written by my doctor stating that I was unfit mentally to do this, but to no avail.

I talked myself into thinking that if I could get through the court case, everything would be easier after that, and maybe everything would go back to normal. I could have my old life back.

Anyway, I got up in court, was interrogated, my injuries discussed in public and trivialised. I felt humiliated. I went home traumatised again.

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Compensation process We obtained a lawyer and began the compensation process. My life seemed an endless succession of medical assessments. The focus for five years was on the extent of my injuries to determine what I was worth in compensation.

My lawyer would send me off for assessments, then I had to go to doctors that wanted to see me. Reports would come back and I was sent for another assessment to look at something else – on and on it went for years.

No one seemed to care about me, or what it was doing to me. It was intimidating and distressing — complete strangers, mostly older men — asked me the most highly personal of questions. I recall walking into a psychiatrist’s office and he wasn’t looking at me, then he asked with a deadpan expression “Anyone dead?” I was completely shocked – this man knows I am on edge. He is a professional yet has no feeling for what that question might do to me.

Constant reference was made as to how I could no longer do this or that. How on earth could I possibly feel good about myself if all I heard was how badly injured I was? Hearing this over a period of years brainwashed me into thinking that I was useless and worthless.

At the end of negotiations, I had to sit outside whilst a figure was reached as to my

worth. I didn’t care anymore; by this time I was dangerously depressed. I remember Tony taking me to the beach and I looked at the sea, just wanting to walk out into it and end this suffering, to stop the pain of everything.

Be prepared If you are looking at legal proceedings, there are things you can do to prepare yourself as much as possible.

Make sure you have plenty of emotional support, and that your family, partner and friends understand the cognitive aspects of a brain injury, such as fatigue and difficulty handling stress, frustration and anger.

Seek a legal firm that has experience with Acquired Brain Injury. Your Brain Injury Association should be able to help out with this.

Keep all your records — no matter how seemingly insignificant — whether it be doctors’ reports, parking receipts or letters from insurance companies. You don’t know when you’ll need certain records to back up your case.

Don’t let the case take over your life. Make sure you continue your normal life as much as possible. It is easy to get very bitter if you feel someone else has caused you all this suffering, but if this becomes the focal point of your life, you will be the one suffering the most in the long-term.

Thanks to Milly for this personal story.

Words fail me Ken Hall is a man living with the lifelong effects of a brain injury, and as a result, the inability to read or write. The 74-yearold Hervey Bay pensioner and one-time drover is the subject of a biographical book called “What next you bastard.”

We recently received a phone call from Ken expressing his desire to raise awareness about this book and to share his insight with others about what it is like to live with a brain injury and illiteracy.

Illiteracy affects so many areas of life. Ken says he is likely to kill anyone he cooks for as he once mistook a can of oven cleaner for spray-on oil, and another time it was bleach for lemon cordial.

What next you bastard?

“My childhood was very short. It ended soon after my twelfth birthday in early 1952”. Thus begins this most extraordinary biography.

According to the author, Monika McFerran, Ken Hall is the quintessence of the ordinary Aussie bloke but there is nothing ordinary about his courage, strength and determination.

“This is a moving story, yet has nothing of the tragic about it” says Monika. “Rather, it reads like a rollicking yarn full of larrakin gusto, occasionally angry, mostly very funny, and without a trace of self-pity”.

Illiteracy in Australia A government report for 2011-2012 indicated that roughly half of all Tasmanians are functionally illiterate – their reading and writing skills are inadequate for daily living and employment tasks that require reading skills beyond a basic level. A percentage of these cases will be due to a brain injury, as in Ken’s situation. In developed countries, functional illiteracy is linked strongly with poor health, poverty, crime and imprisonment.

Radio for all Australians For many years Ken has been campaigning for a nationwide radio service so that anyone who is functionally illiterate can access the news and information taken for granted by other Australians. Ken believes the existing Radio for the Print Handicapped network works well in urban areas, but thinks too many rural Australians are missing out.

He has established a Radio for all Australians website at http://radioforallaustralians.com

IN KEN’S OWN WORDS I was brain damaged in 1948, have no short-term memory, no schooling after turning eight, and could not get a job in the work force, as no one wanted a man that was brain damaged.

I can recall back to when I was four years old. I was a very sickly child spending a lot of my childhood in and out of hospital. At the age of eight I died on the operating table. The priest kept coming to me,“You’re a lucky little boy. You’ll be with the angels tonight”, he told me. Stuff him, I wasn’t going anywhere.

My short-term memory was taken from me, so from then on I could not learn anymore so I became illiterate. I was a permanent resident at the hospital. On my 12th birthday I was moved to the men’s ward. Imagine that, a small boy surrounded by dying old men. It was just terrible. My father was a very cruel, abusive and terrifying person. My mother was a loving and caring person but had to endure my fathers verbal and physical abuse.

I was allowed to go exploring around our area and to ride my push bike for many miles. I was not told you cannot do any of these things due to my ill health. My father won the golden casket and he moved out of home. After he left home, our family life was a wonderful place to be and we had plenty of food to eat.

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