Ordering Lunch – From “potluck” to “easy” with Visual Menus

Gippsland Regional Communication Service is working with Cells Café in Bairnsdale to increase communication access.

Cells Café is a social enterprise creating employment opportunities for people with disabilities in East Gippsland.

The café has a strong commitment to everyone being able to participate. It is working towards being awarded the Communication Access Symbol.

As part of the process, communication access at the Café was informally assessed by Frank Powell, a local man with a disability. Frank has completed training in communication access.

During Cells Café’s communication access journey, there have been many positive changes. Mel Newcomen (Gippsland Regional Communication Service) and Frank reflected on what has happened so far.

Mel Newcomen (Gippsland Regional Communication Service, Scope) and Frank Powell with the visual menu

Frank thinks the visual menu has made the most difference. Frank said that he could only make “potluck” orders the first time he visited, because the menu was only in written format.

 

The original menu

He suggested the menu could include photos of the food, so more people could order independently.

The Café added photos of the food with the prices. They also changed the format from trifold to A4 pages, which is more accessible for people with low literacy and for people who use one hand to open the menu.

The improved accessible menu

When Frank returned to the Café after the changes had been made, he found “they have done a good job.” Mel asked if Frank could order what he wanted this time. “Of course I could, easy”, Frank said, smiling.

Visual menus are a small change that have a large impact on communication access. More people can order the food they want and participate in our community.

Visual menus can make the  difference between getting a “potluck” lunch to choice being “easy”.

 

Mel Newcomen, Speech Pathologist, Gippsland Regional Communication Service, Scope

Communication strategies in Corryong

On May 9th Ranelle and Meredith (East Hume Regional Communication Service) met with a group of Year 10 Corryong Secondary College students. The aim of the meeting was provide information about a project that is taking place in Corryong. Corryong is a small country town in the Shire of Towong. The project involves interviewing people with disabilities. This is where the students at Corryong Secondary have been asked to get involved. Their role will be to interview people with disabilities about the positives as well as some of the downsides of life in a small, rural community.  The interviews will be compiled into a short video which will be shared through the Shire of Towong website and other sites.

The speech pathologists from the East Hume Regional Communication Service were involved in teaching students about disability awareness and how best to engage with people who have communication disabilities.

group in library

The importance of positioning

group having discussion

Talking about communication strategies

The students took part in a number of activities that highlighted the importance of positioning, providing context for communicating and some strategies that can help when having a conversation with people who have a communication difficulty. We enjoyed sharing the role of the RCS with such a positive and friendly group of kids and we are looking forward to seeing the finished product.

Ranelle King and Meredith Lane (East Hume RCS)

Make your own communication resources

The Ballarat library has been working with the Grampians Regional Communication Service to provide a way for members in the community to develop communication resources. The resources have been developed using the Tools2Talk+ app.

The Tools2Talk+ app has been loaded onto a number of iPads at the library. Those interested can learn to use the app (with help available if needed).

A colour printer has also been set up that is dedicated to printing out the communication boards and resources. Alternatively, people can develop the resources at the library and send a copy to their own email addresses as pdf files for them to reprint at their leisure.

This is a free service promoted locally.

The Ballarat library offer one-on-one sessions to use the Tools2Talk+app and print communication boards

Tools2Talk+ is available on the iPad only and is currently $74.99 from the App Store

On behalf of Megan Nestor – Grampians regional Communication Service

What is Key Word Sign?

Key Word Sign is a method of using sign and natural gesture in conjunction with speech. It is used with people who can hear but have little or no speech. Key Word Sign uses Auslan signs.

Why is Key Word Sign used?

Key Word Sign is useful for toddlers, pre-school children, school-aged children and adults with little or no speech. Key Word Sign may be used for a number of reasons:

  • Until speech develops – the person is able to communicate through signing whilst speech and language skills continue to develop;
  • As a supplement to speech – where the person’s speech is difficult to understand, the use of sign and gesture can assist;
  • As an alternative to speech – signing is an effective means of communication in the absence of speech;
  • As a temporary means of communication – for short-term use with familiar communication partners;
  • As a means to help comprehension –use of key word sign to help others understand and learn. Model the use of sign.

Who does Key Word Sign Australia work with?

Key Word Sign Australia works with state-based committees in New South Wales, Queensland, South Australia, Tasmania, Victoria and Western Australia. Key Word Sign state committees offer training and support to the communication partners of children and adults with little or no speech. Demographic studies show that there are between 1 in 500 and 1 in a 1000 people who have significant communication difficulties i.e. cannot use speech as their only means of communication.

This may be due to:

  • Developmental disabilities such as Down Syndrome, Autism or Cerebral Palsy
  • Acquired disabilities such as Acquired Brain Injury, Stroke
  • Progressive Disabilities such as Motor Neurone Disease, Parkinson’s Disease

These children and adults rely on other means of communication to replace or augment their speech. This is known as (Alternative and Augmentative Communication (AAC) or multi-modal communication. The options available for support includes the use of communication aids both electronic and non-electronic or unaided options eg. sign and natural gesture.

Their communication partners include:

  • Parents & carers
  • Kindergarten and Childcare staff
  • Teachers & Education Assistants
  • Supported employment staff
  • Speech Pathologists, Occupational Therapists, Physiotherapists
  • Disability Support Workers

Key Word Sign Australia has been actively involved in training, information sharing and developing resources to support the communication partners of people with little or no speech.

Resources available:

  • Key Word Sign Australia App                                   bit.ly/kwsapp
  • Getting Started with Key Word Sign book             bit.ly/gettingstartedkws
  • Let’s Play with Sign book                                          bit.ly/Letsplaywithsign
  • The Key Word Sign AFL Footy book                        bit.ly/kwsfooty
  • Key Word Sign Posters – Full Set                             bit.ly/kwspostersfull
  • Key Word Sign Posters – Set of Five Posters         bit.ly/kwsPosters5
  • Key Word Sign Posters – Single Poster                  bit.ly/kswposter1
  • Key Word Sign Australia (Scope)
    The research evidence base for
    Key Word Sign Webinar(2016)                               bit.ly/KWSWeb1

 

To find out more about Key Word Sign click here.

By Karen Bloomberg

Bridging The Gap

“What to do after 3 days of communication coordination training”

We felt this was a question that most of us ask after attending any training session…… “Okay, I have learned some new information, but how do I put it into action?

With this in mind we planned a 4th day as a Resource Creation Day. The primary aim of the day was to provide an opportunity for Communication Coordinators to come together to create resources to support communication in their workplace.

The workshop format was informal and allowed everyone to raise an idea, brainstorm the concept using everyone’s knowledge and experience, and then to create it. The simple concept of creating resources seems to be a major barrier to communication coordinators fulfilling their role back in the workplace. Often they feel unsure about where to start or fearing that what they create will not work.

The ability to meet with others who have completed the training and identify that the feeling of potential failure is quite common, reassured most that ‘having a go’ was the essential first step. For some, the day provided an opportunity to discuss their ideas before taking the plunge to put it together for implementation.

Having staff on board and “on the same page”, was identified as one of the key indicators of whether communication strategies would be successful. It was also identified that this is difficult to attain at times. To attend a training session and then go back to the workplace with knowledge and a concept is very different to going back to the workplace with knowledge and a physical object/support. It is easier to have staff on the same page when they can see what the strategy is and implementation can begin immediately

The rural context means the tyranny of distance reduces the opportunities for staff from a variety of settings to come together and share their knowledge and experiences. This 4th day enabled networking across day services and accommodation services in the development of resources.

So what did we make?

  • Weekly timetables for whole of service
  • Individual visual schedules
  • Writing of a social story
  • Individual annual planner
  • Development of communication profiles
  • Developing scripts for client interactions
  • Activity choice board

 

 

 

 


Would we do it again?

Feedback from participants indicate that we have helped to bridge the gap between learning a new skill and implementing that skill. Of the 14 participants, all of them have requested another opportunity to come together and make re- sources with guidance and a collective brain. Comments included:

“Extremely useful, I went away achieving 3 plans for communication.” “Discussing and sharing ideas as a team and working together was the most useful.”

“I would like to see this happen every 3-6 months as it will open up new doors for better communication between staff and residents.”

So, yes, we will be offering this day again over the coming year as a strategy to support our Communication Coordinators in their day to day work.

By Emma Douglas & Sharon Champion

Chancez café

There is a new and exciting communication friendly café in Epping called Chancez.

Araluen, an organisation providing services to people with intellectual and other disabilities, has been involved with the North West Communication Coordinators Network for about eight years. As part of the network, teaching support workers an understanding of how to use visual supports and augmentative strategies to help people manage communication and literacy difficulties has been important. This can be seen in practice with the café Araluen has set up to provide employment for some of their clients.

Working in a café calls for many skills, the obvious being making coffee and serving customers. Behind the scenes there is a much wider range of challenges – working the register, managing the food on sale and adhering to safe food handling practices, managing money and giving correct change, keeping things clean and organised, ordering new supplies and the right amount of them . . . and so on.

All of these activities involve communication in a range of forms. Having an intellectual disability can compromise a person’s communication skills, and so the café needs to have many systems in place to support the staff to run it well. This café certainly has that!

The clients involved were initially enrolled in a food handling course (which included barista training), but while this gave them some technical skills, they had no opportunity for developing customer service skills. Working at Chancez café gives them the practical experience needed to work in more mainstream settings.

Leigh, the manager of the café, has worked with the staff/clients to problem solve ways that they can manage all the tasks required, including adhering to all OH&S and safe food handling guidelines relevant to running a café.

She worked with the team at Ordermate to adapt a POS (Point of Sale) system for the order register so that it is largely picture-based. Staff can see photos of the range of drinks on offer, and can select the appropriate picture to put through the order. There are plans to expand this to include the food items for sale. It has images of coins and notes to help staff work out how much change to give the customer, and many other things. And Leigh hasn’t “dumbed it down” for the staff. The café offers ALL the possible varieties of coffee drinks (and there are many!), several different milks (eg. soy, almond, low fat) as well as a range of teas.

The system for the ordering process is largely picture based. Staff can select the appropriate picture to put the order through.

The coffee machine is labeled for the range of different drinks, and staff learn to match the docket with the coffee machine and the correct cups/glasses for the drink are stacked near the label. There’s even a picture system to use the correct milk from the range on offer!

 

Clear labels on the coffee machine guide staff to make customer orders

Other picture/photo/object based supports include:

  • a colour guide for the different cloths associated with different activities eg. “blue cloths for milk wand and jugs only”; “red cloths for dishwashing only”.
  • a photo guide for the range of jobs to do and a system to indicate when the job is done
  • colour-coding for food and drink categories
  • another colour-coding system to manage the expiry date of the food that hasn’t been sold
  • using milk container lids and labels to help buy what’s needed at the shop down the street

Clear colour labelling of cloths guide staff through the cloths used in different cleaning processes

There are many other systems supported by pictures/photos and objects – too many to mention here. You’ll just have to go out to the Multi-Cultural Hub in Epping and see for yourself!

The Multi-Cultural Hub hosts many community and disability specific services and is frequented by people from a wide range of cultural backgrounds, often with little skills in English; such a communication accessible café is perfect for them!

The skill and confidence of the staff have grown. One person, with a stutter that would stop him talking to people, can now order supplies on the phone. Another used to speak so softly he was often inaudible, but has learned that he needs to speak louder for customers to hear him. One man has taken on the role of mentor and has begun to support other staff who may be newer or less skilled.

Chancez resonates with a strong ethical base. They have a pay-it-forward system, where a customer can pay for two coffees – one for themselves and the second for someone else who may not have the money for it. Little Things, a social enterprise coffee roaster supplies the coffee and left-over food is donated to those that need it.

New products such as Gingerbread People are already in motion at Chancez cafe’

Plans for the future include making food (gingerbread has been recently on offer for tasting), and extending the visual supports to include photos of regular customers linked to their usual order on the order register. Staff can then start making a customer’s preferred drink as soon as they walk in the door!

This is an inspiring example of capacity building through a comprehensive and continually evolving use of visual supports and augmentative strategies. These strategies enable people with intellectual and communication difficulties to perform a wide range of tasks successfully, leading to a growth in their confidence, skill and personal capacity.

Congratulations to Araluen for its vision, Leigh for her innovative use of visual supports and continued problem-solving, and most of all, the staff for their ongoing learning and for giving great service!

Chancez has recently been featured in a range of media including the Epping Star newspaper and on Channel nine. Check out the links below for more!

Chancez Cafe’ facebook:
https://www.facebook.com/pages/Chancez-Cafe-Epping/1557866297854283

Epping Star:
http://www.starweekly.com.au/news/epping-cafe-gives-people-with-disabilities-a-chance-to-succeed/

Channel 9 online:
http://www.9news.com.au/national/2016/07/28/11/29/melbourne-cafe-gives-staff-members-with-intellectual-disabilities-a-chance-to-thrive

Libby Brownlie
North West Regional Communication Service

Supporting the Supporters: Helping Martin enjoy the pool

Martin pictured with his social story book he uses when he goes swimming

A simple picture-based story has made Martin’s trips to the leisure centre a more pleasurable experience for him and those around him

The Regional Communication Service (RCS) supports people who live with communication difficulties and the people who support them.

To provide this support, the RCS uses an innovative capacity building model of service provision. This is different from traditional service provision, such as the medical model. In the medical model, the speech pathologist is the expert who assesses, provides therapy and resources. In the Regional Communication Service, the Speech Pathologist builds the capacity of staff and/or other significant people with a person’s life to ensure sustainable change.

A recent example of working in this way was a request I received from a staff member at Noweyung, an adult training and support service in Bairnsdale. We share an on-going professional relationship where we collaborate to provide communication strategies for people with disabilities who attend Noweyung. As a speech pathologist, I provide advice and feedback on communication strategies that staff suggest, thus building the capacity of the staff in the process.

The staff member described the scenario of Martin, an enthusiastic and outgoing man with a disability. He communicates using key word sign, some words (although often difficult for those who don’t know him to understand) and pictures. Martin loves swimming at his local leisure centre. He attends a swimming program with staff there to support him.

In attending the local leisure centre, there are many social rules that people observe – this includes an understanding of change room etiquette, when it is OK to get in and out of the water and where it is OK to swim, exercise or just play around. Staff supporting Martin understood that using speech alone could not communicate the many rules and expectations at the pool. So, it was decided to develop a picture-based story that looked at important information for Martin be able to understand the rules of pool behaviour. The picture-based story, also known as a social story, incorporated photos of Martin and simple written information about what to do and what not to do at the leisure centre.

The staff member took photos and drafted the story with the help of the speech pathologist from the Regional Communication Service. The book was then read to Martin who was able to recognise the photos and understand what it meant. He particularly enjoyed the section on when it was okay to jump in and to splash.

This book changed Martin’s swimming program completely. It increased his understanding of the behaviour that was expected. Staff noticed that Martin seemed more confident swimming at the pool and it also reduced many of the tensions that arose from misunderstandings that had previously occurred.

With the support and supervision of a RCS speech pathologist, the staff member was able to produce a simple picture-based story that made Martin’s trips to the leisure centre a more pleasurable experience for him and those around him. The added bonus now, being a staff member who has learned how to develop and implement a useful communication strategy.

By Mel Newcomen
Speech Pathologist
Gippsland Regional Communication Service

 

 

Communication Access using eLearning is launched!

A big focus of the Regional Communication Services around the state has been Communication Access. Communication Access is about making our communities more accessible for people living with communication difficulties. The role of our service is to support businesses to become more Communication Accessible. This can involve staff training, developing communication boards, advice around signage, and support to develop written information in an accessible format (e.g., Easy English). Previously, we have trained staff at businesses face-to-face. A barrier identified by businesses with this method was being able to back-fill staff so they can attend training. With our very large geographical area, training dozens of staff from different businesses was difficult due to travel time.

In partnership with Carl Russel, a gentleman living with communication difficulties, we designed an eLearning Package to be piloted at a local council. This package essentially has the same content as the face-to-face training which covers communication strategies, other tips to make businesses more accessible, and Carl speaking about his experiences. Using iSpring, an add-on to PowerPoint, our face-to-face training was converted into presentation with voice recordings and video clips. The presentation was then published to a USB stick, mailed out along with instructions, and voila – staff can complete! The training takes around one hour and can be completed when this suits the business. We anticipate that eLearning will reduce issues around staff cover; and eliminate hours of travel meaning more people in our community can be trained.

Those who have completed the training so far have said that they really liked the eLearning format. Unfortunately, access to YouTube and Internet speed has been a barrier but we are working on having the training available offline.

This slide talks about communication strategies to use when speaking to a person with communication difficulties.

This slide talks about communication strategies to use when speaking to a person with communication difficulties.

This is a slide from the presentation. The link takes you to a YouTube clip of Carl telling his story.

This is a slide from the presentation. The link takes you to a YouTube clip of Carl telling his story.

By Karen Oswald

West Hume Regional Communication Service Speech Pathologist

 

Value our volunteers: equipping them with the tools to engage people in local communities

As a student Speech Pathologist one of the many aspects of my placement with the eastern regional communication access network was to present at training workshops for community volunteers. The first training session was for community volunteers in the south-eastern region and the second training session was for community visitors who visit people with disabilities in residential housing and advocate for their needs if they can’t speak up for themselves.

1

Key Word Sign training

The first training session involved volunteers from varying cultures and backgrounds. Some volunteers were working with people with disabilities on a regular basis and wanting to learn more strategies to improve effective communication. The others in the training worked with a range of people from those with mental health issues to people who were socially isolated. The content of the training included practical strategies for improved communication with people with communication difficulties, an explanation and discussion of Augmentative and Alternative Communication (AAC) and an introduction to the communication access symbol and what it represents.

Many people were also very interested in key word sign and what it is and learnt some helpful signs too! The volunteers were shown different AAC devices including low tech, paper based devices as well as some electronic AAC devices. There was a lot of interest surrounding the different devices and what were the possibilities with someone using these devices.

2

Listening to Those Rarely Heard is a training package designed to guide supporters of people with severe to profound disability through the supported decision-making process.

The second training was for community advocates who were eager and enthusiastic to be given the training opportunity and therefore keen to learn new information. All of the advocates visit people with disabilities in their homes regularly. Many are individuals with severe intellectual disabilities where determining their preferences and concerns is very difficult. The presentation included an overview of communication, an introduction to supported decision making (Watson, 2013) and introduction to the concept of “Talking Mats” (Joan Murphy) as a potential tool for people who would benefit from structured conversation.

This group had indicated they would like to use a tool to gauge an individual’s situation and concerns so they could be better at advocating for the person. They were interested in how structured conversation may be a way of discussing meaningful topics that may require advocacy (e.g. living  arrangements, diet, activities).

These volunteers had an impressive understanding of how their client’s communicate and explained how they were able to differentiate between subtle differences in vocalisations, facial expressions or body language. The training was very well received and they were keen on doing further training particularly in applying Talking Mats to specific clients who may be able to use it and benefit from more detailed discussion around how they wanted their life to be.

3

Talking Mats in action

All the volunteers responded with positive feedback and were very happy to have upskilled their abilities. It was very encouraging to know that there are very competent people willing to volunteer their time and who are eager and willing to be a part of change for individuals and their communities.

By Bethany Simons                               Supervised by Bron Jones
Student Speech Pathologist                Eastern Regional Communication Access Network

Watson, J. (2013). Listening to those rarely heard: Supported decision making in this brave new world of individualised services. Paper presented at the 11th Biennial AGOSCI conference, Sydney, Australia.

Craig and Gonda’s stroke story; our journey so far

I am Gonda, Craig’s long term partner and this is our story of loss, grief, acceptance, hope and love.

Craig and I had a whirlwind romance. We met in the Melbourne Casino almost 16 years ago. Following a lunch date the next day, we spent the whole week together. Craig lived in Darwin (NT) at the time where he owned a manufacturing business producing solar hot water systems and water tanks. He would supply and install them predominantly in the Aboriginal communities in Arnhem Land.

before-craig-gonda-murray-river-inlet-near-house-2011

Craig & Gonda at the Murray river inlet near their rural property – 2011

The day before his return to Darwin, he asked me to marry him – to which I answered YES. I moved up to Darwin five weeks later with my then three and a half year old daughter to be with Craig. After almost four years we moved to Perth (WA) for a few years to follow business opportunities and have spent the last 10 years in Albury (NSW).

before-craig-brooke-daughter-wedding-danielle-2011

Craig & Brooke (daughter) -2011

Craig was born and bred in Perth (WA) where his family resides and has gone for yearly holidays to see his family since March 2015. This year he was there when his (only) daughter delivered healthy twin girls. To catch up, we regularly FaceTime with his daughter and her husband, the twins, his older grandson (4) and granddaughter (2). He also Skypes with his mother (and does speech practice with her as well), dad & stepmum, sister and brothers on a regular basis.

Craig was very entrepreneurial in his working life. He started his first business, a travel agency, at the age of 18. He then entered the renewable energy industry where he was always at the forefront of new developments.

After moving to Albury, he started the Planet Power renewable energy shop, which he quickly developed into a franchise with 9 shops in Australia’s regional areas. Business didn’t always go to plan, but Craig had the ability to quickly pick himself up and move on towards bigger and better projects.

Prior to his stroke, he had taught himself how to calculate major renewable energy saving solar-wind-water installations for large multinational companies and was very successful at selling these. He was always a salesman at heart and always so motivated and determined to make his working life a success; not just for the economic pay off, or prestige, but for our dream – to help disadvantaged communities in countries like Africa with their water and energy supplies.

In 2011 when we first sent wedding invitations out and the whole event was organised, Craig had a heart attack. Then in 2014 we again planned to wed, but quietly this time around – our world turned upside down.

On 20 January 2014, when he was 53, Craig had a major bleed in the lining of his brain on the right hand side (haemorrhagic stroke). Transported to the Alfred hospital in Melbourne, he was operated on the following day to remove part of his skull to relieve pressure from the blood build up on his brain (surgical decompression). Craig’s skull bone was successfully put back in place (cranioplasty) on 10 February 2014.

during-1-craig-following-the-removal-of-the-ecmo-after-haemorrhagic-stroke-major-heart-attack-feb-2014

Craig following the removal of the ECMO (after haemorrhagic stroke & major heart attack) – February 2014

The following morning on 11 February 2014 Craig suffered a major heart attack (VF arrest and STEMI). An angiogram with balloon angioplasty came next where they used a small balloon at the end of a catheter to open the narrowed arteries and he was connected to the ECMO (that cleared his blood of carbon dioxide and replenished it with oxygen outside his body to then pump it back in through large tubes inserted in both his groins, because his own heart was too weak and needed to recover) and kidney dialysis machines, amongst a lot of other lifesaving machines. Craig was still critical until 14 February 2014 when they disconnected him from the ECMO in a 6.5 hour operation.

On 11 March 2014 – only 4 weeks later – Craig suffered a massive stroke in the left lobes of his brain. The ischaemic stroke (left parietal-temporal infarct) was due to a dislodged blood clot from his heart. He was then transferred to Caulfield rehabilitation hospital (Melbourne) to start intensive rehabilitation on 28 March, 2014. Another month on, Craig arrived at the Albury rehabilitation hospital (NSW) on 29 April 2014 and was finally allowed home on 14 August 2014.

As a result of the ischaemic stroke Craig was left with serious impairments including right sided weakness (right hemiplegia) and severe expressive speech deficits due to aphasia and dyspraxia, because of the damage caused to the left hand side language centres of his brain.

– Aphasia is a language disorder that affects speaking, writing, reading and understanding the spoken word

– Dyspraxia means that the link from the brain to the mouth muscles is affected. Craig may know exactly what he wants to say, but cannot sequence his mouth muscles to move in the right manner to speak the right word/sentence.

The first 3 months of 2014 were simply put; absolutely horrendous! With my emotions ranging from complete despair, when Craig was on full life support for more than 24 hours following both the haemorrhagic stroke and the major heart attack, to total elation when against expectation he pulled through and recovered remarkably from both these medical emergencies. To then have my world and our life as I knew it, entirely shattered when Craig had the major left sided ischaemic stroke. The first time I saw him after this stroke he could not do or say anything, but wipe my many tears away with his functioning left hand.

during-2-craig-2-days-after-the-ischeamic-stroke-march-13-2014

Craig one day after the ischeamic stroke – March 2014

Thankfully 8 months before Craig’s many medical events in 2014 we had moved from our 7 acre property to a smaller house in town. Craig had loved being on the farm though. On weekends he enjoyed using the tractor slashing the paddocks and doing all the other strenuous maintenance jobs that come with a large property. Being in town makes our lives easier and I certainly would not have had the time or the ability to uphold the property on my own.

From the time that Craig went to the Caulfield rehabilitation hospital my life truly became extremely hectic. During that first year I was living from one energy-and-emotion draining day to the next. Not only because I was so focussed on learning everything I could on how to assist Craig to recover as best as he possibly could, but also because my then 16 year old daughter had just started year 12 while going through this dramatic time on her own in Albury. She had the added stress of cooking for herself; looking after the house; caring for our cat and dog and everything else that is involved in running a household. I tried to support and provide for her to the best of my ability from Melbourne with long daily phone calls. Whenever one of Craig’s family members was able to come over on intermittent visits I jumped at the chance to do the almost 700km round trip to Albury and back. Sometimes for one night only.

I did not attend just about every speech, occupational and physio therapy session, but in the beginning Craig needed help with eating, showering, dressing and grooming with which I was involved on a daily basis. With that said, my spirit was often very high, because of the many improvements Craig was making.

The in-house rehabilitation physio therapists got Craig up and walking. At first with the assistance of three people and later down the track with just a walking stick, while wearing a splint on his right lower leg to keep his foot from dropping. The occupational therapists taught Craig how to dress and groom himself to the best of his ability with only using his functioning left arm and hand. The speech pathologists tried very hard for Craig to be able to make sensible sounds and words, and also worked on improving his reading, writing and understanding of the spoken word as well as teaching him to use other strategies (pointing, signals, writing and such) to communicate. Even though, Craig has been unable to speak in normal terms he has been very adept at being able to communicate through body language, pointing and sounds. Prior to his stroke I had always told him he was an open book to me. How invaluable it has been to always have had such a close relationship, so today we can still communicate on a deep level.

On Craig’s return home he continued with weekly speech and occupational therapy at the community rehabilitation. He had Botox injected (August 2015) in his right arm to immobilise the muscles that turned his arm and hand inwards and upwards towards his chest (due to spasticity of the muscles) and to then have the opportunity to strengthen the opposite muscles. We did intense training exercises for about 5 months at home and now Craig can; for instance: use his right arm and hand to mow the lawns and change the catcher by himself, play pool and can often use his right arm in a supporting bilateral role when doing something with his left arm and hand. This greatly improved his independence and importantly his sense of contributing.

Verbal speech did not progress (despite countless attempts) until Craig went for his first holiday to see his family in Perth in March 2015. He was taken to see a speech pathologist and she convinced and motivated him that he could learn to speak again if he spent two to three hours a day rehearsing words and short sentences with me. He came back to Albury and for the first time since his ischaemic stroke he was able to copy me saying whole words. Prior to this, Craig had trouble to control his mouth muscles to copy movements for simple vowels such as the letter E.

Following 3+ months of practicing like this, I developed (with the help of a speech pathologist) a program to sing some of these the sentences together (MIT – Melodic Intonation Therapy) to engage Craig’s right side of the brain were oppose to speaking (left side of the brain) the ability to sing is located. This proved to be more successful. Later on I made a booklet (and a large collage at home) with photos of the mouth movements of letters within the target sentences, in the hope that Craig could instigate the sentences by himself without my help of modelling the movement of the mouth. During that time he slowly learned to say: “Hi, Yes, Come here please and Thank you”. The last time we attended the community rehabilitation (November 2015), following months of daily practice, Craig was able to say: “Hi” to everybody! That was very special.

At the beginning of this year (2016) we started weekly speech sessions at the Speech Clinic at a local university, which offers speech pathology students (under supervision of a very experienced speech pathologist) a chance to interact and assist people with communication issues. This has been very beneficial for Craig. Through various different approaches, and lots of home practice, Craig’s reading, writing and understanding of the spoken word has improved significantly. His speech has progressed that he is now able to say independently: “Good thank you” and “How are you?” when someone asks him “How are you” first. We achieved this by teaching Craig (on advice and with assistance from the Speech Clinic’s speech pathologist and student) to focus on the sound of the starting letter of the first word instead of solely on the placement of his tongue and lips. Craig and I are very excited to find out where further Speech Clinic sessions may take his speech development in the future.

We are also keen to start swimming practice in the warmer months, which on our request was developed by a community physio therapist (unfortunately, at the moment the indoor pool is not suitable for Craig to get in or out off). This will again stimulate his right arm and leg and together with his twice weekly gym sessions it will also benefit his fitness. Craig also really enjoys his twice weekly respite outings to a rural pub (Bethanga, Victoria) to catch up with his mates. They have really taken him in and he is included in all their banter and laughter, which is truly heartwarming.

We are involved in a weekly singing group, the monthly local Stroke Recovery group and the Cuppa & Conversation group, which have been really great to make new friends with people who are in similar circumstances. Especially since so many lifelong friends have gone silent and stayed away. In downtimes, Craig and I love nothing more than to follow the AFL footy on television and on occasion in Melbourne. In summer, he likes watching the cricket on the television outside from our inflatable upright pool.

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Post stroke Craig and Gonda at the MCG watching an AFL game – June 2016

In future, our goal is to recover more function in Craig’s right arm and hand and to develop Craig’s independent speech further. Craig’s dream is to be able to drive a car again and to work in some meaningful capacity. Likewise, I would also like to participate in employment.

Craig is also very interested in being a participant in clinical trials of dental pulp stem cells transplant, bone marrow transplant and/or perispinal etanercept injections. The latter is not available in Australia as yet, but is obtainable in the US and it is my aim to set up fundraising to be able to have this procedure done.

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Craig & Indira (stepdaughter) – October 2016

Thankfully, Craig has still got his positive outlook and his wry sense of humour. Every day we experience – or one of us does something – that has us just about rolling on the floor with laughter. Yes our life now is completely different and rather challenging at times, but following the losses and the feelings of grief we reached acceptance fairly quickly. It is what it is. Hope, but especially our love keeps us going onwards and upwards.

 

By Gonda with the assistance of Craig