ISAAC Australia’s own Janelle Sampson wins Community Award!

There are a lot of things I could say about Janelle Sampson, she is just a fantastic

woman full stop.

Janelle has taken a tremendous business risk this year and has started running

workshops by people who use AA C, which is inspiring the AA C community in

South Australia in so many ways.

Mel Smith says, I had the privilege of working closely with Janelle in November

2014 on a mentor project connected with two way street and funded by Julia Farr

Foundation, it was probably the most rewarding and enjoyable weeks in my career

as an AA C user. Janelle was incredible to work with, because she was so

passionately professional about everything and everyone. She certainly made me

feel highly valued and confident in all areas of my knowledge and expertise, and this

made my week in Adelaide incredibly easy. Janelle always makes the time to listen,

to offer advice as a mentor or colleague would and never does she take over from

one’s original ideas or suggestions. Janelle is an extremely dedicated communicator,

very clear in her mind what AA C is, and very positive at all times to learn from AA C

users themselves I am extremely proud to know this woman professionally and

personally.

 

Jack White is the posthumous winner of the ISAAC Australia Information Award

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The Information Award. The award is given for work that raises

awareness of AA C. It includes articles, lectures, public appearances, radio interviews or

public work of art.

This award goes to Jack White, of Shelley, Western Australia.

Jack died this year, he was only ten years old but kept using his AA C strategies until the

very last days.

Jack White is a 10 year old boy who has always just wanted to live an ‘ordinary’ life,

but in doing so, has been extraordinary. Jack has mitochondrial disease and due to

this, is unable to sit, stand, walk or talk without full support and assistance. Jack has

used the PODD communication system as his main means of communicating since

he was 3 years old. Through using his PODD, Jack has been able to share his

bright mind, wit and imagination and been able to live an extraordinary-ordinary life

full of adventure, travel, pirates and superheros, a passion for the ocean and all

creatures within it, and plenty of high-jinx spy games – finding the words to call his

nasogastric tube his ‘comms’ for example.

While visiting Sculptures by the Sea at Cottesloe Beach, WA in the summer of 2013,

Jack White was inspired by a glass sculpture of a whale shark. Set against the

turquoise blue waters of the Indian Ocean, the sculpture, named ‘Transparent Sea’,

so captivated Jack that he used his (PODD) to tell his communication partner that he

wanted to write a poem about it. Using partner assisted auditory/visual scanning

with a combination of head nods, squeezey big blinks and his voice to indicate yes,

Jack navigated his PODD, writing for over an hour. He used the same AA C

strategies and system to share what inspired him to write his poem. His poem, and

inspiration, was later entered in the Sculptures by the Sea writing competition and

Jack won first prize. This excerpt from ‘Jack’s Story’ written by his mother,

Charmaine White gives further insight:

“The message in Jack’s poem is profound. Like the whale shark, Jack is

unique.

It took Jack just over an hour to write his poem, all the while, fighting off

seizures and fatigue. His poem aptly describes how he yearns to experience

the freedom and mobility to move with ease and explore his environment just

like the whale shark, as mito has robbed him of the ability to use his legs and

he is confined to a wheelchair. On his entry form Jack was asked to comment

“What inspired your writing piece and why?” he answered: “I can not speak. I

know (what it may be like for the whale shark). I’m wanting you to know.”

Whale Shark

I’m not dead,

I feel. I love affection.

Peaceful, I can know.

I can not talk.

I can not go.

Imagine I go to my park, beach, sand.

I see.

I swim.

I, you, float, whale shark.

Finish watching.

I need to swim.

Jack’s poem, along with Jack’s Story now sits on a plaque alongside ‘The

Transparent Sea’ sculpture as a permanent exhibit at the Maritime Museum in

Fremantle, WA. Through his poetry, Jack is raising awareness of AAC. His poem

and his story stand next to ‘The Transparent Sea’ sculpture in a public space, as a

permanent visual testament to anyone with complex communication needs trying to

have a voice, trying to make their voice heard.

Last year, Jack was chosen to be the 2014 Variety Bash Ambassador . His

involvement as the 2014 Ambassador meant he travelled up to Exmouth, opened the

water park there and formally led off the bash. Jack also had his dream come true,

going out whale watching, spotting his beloved whale sharks among other ocean life.

Throughout this remarkable experience, Jack of course had access to his PODD and

was able to use it in his ‘professional’ role as Ambassador, chatting with the

‘bashers’ and tour operators alike, advancing awareness of AA C amongst a wide

range of different groups of people within his state.

Sadly, after a long battle with illness, Jack recently passed away. That Jack was able

to communicate effectively albeit with great effort using his AA C system and

strategies right up to his last few days, meant he was, at just 10 years of age, able to

grapple with the hardest conversations one can expect to have in life when facing

the reality of one’s own mortality. It was during this time when Jack was told about

this nomination for an ISAAC Award. It gave him great joy to know that his work

would be recognised in the form of an ISAAC nomination.

We will send Jack’s parents the award certificate and the gift voucher telling them

to buy a gift for themselves from Jack.

Eli Dickenson wins ISAAC Australia Community Award

Eli Dickenson (Maylnads, WA) is a young adult in his twenties who lives his life to the full. He also happens to

have Angelman Syndrome and associated complex communication needs, and uses a

range of AAC tools and strategies to communicate. Eli is an active member of his

community, in fact, of the many varied communities to which he belongs.

Eli has strong social connections within his immediate community. He maintains many long-

term friendships and continues to build new relationships through his skill at selecting from a

wide range of multi-modal communication strategies the best to suit his particular community

environment or friend. For example, with his mates at the footy Eli tends to ‘yell out’ using

the Big Button Box app to select from a wide range of sound effects that which most

appropriately expresses his feelings towards the ref or players, whilst he uses sign to convey

more discreetly to his mates exactly what he thinks of the opposition’s supporters. In other

contexts with his same buddies he may point to symbols on an Aided Language Display – for

example at the swimming pool he has one attached to his kick board, yet with those same

buddies out in the pub he might use a combination of sign, vocalisations, his PODD and

PODD for compass on his iPad to share in the banter or more in depth conversation. Eli

loves interacting with people and his friends are very important in his life. Learning to use a

range of AA C supports has been extremely positive on Eli’s ability to form and maintain

friendships across his communities.

 

In the early years, Eli’s business began hiring out Panasonic Toughbooks to other people

with complex communication needs and behaviours which can be seen as challenging so

that they could learn to use technology and find a tool to help them communicate. There are

a number of people in Western Australia who now use technology as a result of Eli’s

business. Eli’s promotion of Toughbooks lead to them being funded devices in WA, and for a

while he had the nickname ‘Toughbook Eli’. He now uses an iPad and focusses more on

public speaking for his work.

Increasingly Eli has been sought after as a public speaker whose personality and use of

technology inspires others to see that everybody can communicate and make decisions

about their own lives. His first presentations in schools included Esperance Primary School

and Presbyterian Ladies College in Perth, and he has done a number of presentations in the

School of Education at Edith Cowan University and the School of Business at Curtin

University, showing students the value of experiencing alternative communication and giving

them confidence to engage with AA C users. Eli has since presented to many family groups

and workshops, including the Angelman Syndrome national conference and the Voice

Choice Control conference in NSW in 2013. Last year he was a paid presenter in the

Supported Decision Making project workshops run by WA’s Individualised Services, and was

paid to present to the national leaders workshop for the N D I A, in Geelong last year about

his life, showing the importance of individualised services, friends and a belief in everyone’s

ability to self-determine.

 

Eli actively uses his AAC in his on-going post-school education. In 2012 and 2013 Eli

attended classes and studied for the “Certificate I in Music Industry”. Although he hasn’t

yet passed all components of this course and has therefore not yet attained the certificate,

through his participation, Eli has raised significant awareness in this community (for students

and staff alike) about the importance of AAC in allowing genuine academic and social

inclusion to occur in both the classroom and around campus. His use of multimodal AAC

strategies enabled him to form at least one new long lasting friendship with a fellow student

in the class. This student happens to be a refugee from Uganda and Eli’s use of AA C

enabled him to bridge differences in language and culture.

Eli can often be seen out and about in his community, cycling or trainspotting, wearing and

using his AAC systems. As well as his voice, key word and idiosyncratic signs, and other

informal communication, Eli uses his personalised 40-cell PODD book, PODD 60 for

Compass on his I Pad and other AA C technology to communicate. Eli also maintains a

strong social media presence, both with his personal Facebook page and his Merger of

Minds business Facebook page, and is nearly always pictured in his posts with at least one

of his AAC tools. Eli frequently uses his own emergent writing skills to post on his Facebook

walls independently, and also tells his friends or support workers what to post using his

PODD book or PODD for Compass on his iPad. Within this forum, Eli shares stories of his

many ‘AAC success moments’ in the community .

 

Wherever Eli is, he has multiple means of communication with him. Wherever Eli is, you can

be sure he will be working out which of his AAC tools the people he is intending to interact

with will most understand or respond to. Eli is constantly surprised when other people he

meets with disability do not have AAC available to them and finds ways to communicate this

to those he is with. He is a passionate advocate for AAC and an exuberant role model for

those with complex communication needs – especially those who may also have been

considered by others to have an intellectual disability and/or demonstrate behaviours which

others may consider to be challenging. Eli is changing perceptions, forcing different

members of the varied communities with which he engages to think about AAC differently, to

recognise that everyone needs a voice and that with a voice a good life is possible.

 

 

 

 

Sue Stephens wins ISAAC Australia Community Award

The ISAAC Australia Community Award goes to someone who actively uses AA C in

the community and actively contributes to the use of AAC in the community. This

award goes to Sue Stevens in Eltham, Victoria.

Sue is a dispensary technician at a community pharmacy in Hampton

East. Amongst her customers are a number of people with disabilities.

Sue makes an effort to communicate with customers using their

preferred methods. She has picked up a few key word signs from her

regular customers and puts these to use.

In 2014, Sue was featured in the “Good Things” video. The video

showed Sue using simple Key Word sign to communicate with a

customer. Since the video was released, Sue has had a lot of feedback

from customers and acquaintances and has developed an interest in

disability. She has gone on to study in the field.

Congratulations Sue.

Malkara Specialist School wins 2015 schools’ award!

Malkara has made a strong commitment to ensure all students at the school with

Complex Communication Needs have an appropriate Augmentative and Alternative

Communication System, that the systems are used daily and that all staff have

appropriate training in using the systems and in becoming good communication

partners. As a result, students at Malkara are daily becoming more competent

communicators.

In 2012 the school executive established a trial Proloquo 2 Go Classroom to look at

implementing good quality AA C intervention and support for a trial group of students,

focusing on students who had a recommendation from a speech pathologist to use Proloquo

2 Go.

In 2013 the school implemented aided language displays throughout the school. All staff

were required to wear and use aided language displays. This was highly successful, with

many students learning to use symbols for a range of communicative functions and with

positive outcomes in terms of student’s receptive and expressive language and in creating a

community of more skilled communication partners. In addition, a number of students had

their own AAC systems. PODD books, followed by I Pads with Proloquo 2 Go, were the

most common systems, but low tech core vocabulary systems, PECS and other AA C apps

on iPads had also been recommended for some students. Staff received training and

practice on using and supporting these systems although the primary focus for the whole

school was on aided language displays and aided language stimulation.

In 2014, the whole school focus was on increasing aided language input. Teachers were

asked to use aided language for at least 50% of the school day and the range of aided

language displays was increased. Further work was done on helping staff to become

competent with their students’ AA C systems so that aided language could happen using the

systems appropriate for each student. A PODD working party was established to build

resources for whole school training around implementing PODD.

Overall, the school has made a significant and sustained commitment to creating a

community that supports and uses AAC daily. The whole school community has recognised

the importance of ensuring all their students with complex communication have a “voice” and

have worked hard to ensure that this has happened in an appropriate and sustainable way.

As a result, all staff have become much more effective communication partners and the

students attending the school are becoming much more competent communicators.

And we wish all schools could be like Malkara.

ISAAC Australia 2015 awards announced

The winners of this year’s ISAAC Australia awards were announced at the AGOSCI conference on 14th May.  Congratulations to all winners!

School/organisation awards: Malkara Specialist School (ACT)

Information Award: Jack White (WA)

Community awards:

  • Sue Stephens (Vic)
  • Eli Dickenson (WA)
  • Janelle Sampson (SA)

Watch the next few blog posts for more information about the winners.