12th Angelman Syndrome Association Australia National Conference “From Strength to Strength”
The Sibling Relationship: Bridget Exner
This presentation examines the evolution of the sibling relationship in a family living with AS. Bridget has navigated the complex world of Angelman Syndrome with her younger brother, Connor. She explores how the AS sibling relationship changes throughout the years, and identifies the key external factors that can influence the relationship and the experience of living with AS. Bridget also shares what she has learned about resilience, tolerance and dealing with adversity. Bridget is currently completing her final year of a nursing degree at University of Queensland and hopes to specialise in pediatrics.
Communication Using Integrated Technology: Peta Perrie and Fiona Lawton
This presentation demonstrates the key elements of communication through technology, as an empowering, enabling and inclusive medium for children with AS. It fosters positive behavior management and creates many avenues through which people living with AS can interact with their environment through emerging technologies. It paints a picture of an empowered future for our loved ones. A multimedia presentation using PowerPoint and video to demonstrate how two children are using modern available integrated technology with their communication Voice Output Device (VOD) Assisted Augmentative Communication (AAC) devices. Mia and Connor are using their communication tools to interact with Google Home to control their environments, such as requesting and selecting which movie they would like to watch on Netflix or listening to their favorite song on Spotify, or to listen to some funny jokes through YouTube. They are having fun exploring, asking and integrating into everyday routines to find out such things as what day of the week it is and the weather. Even what is in their daily schedule when their Google Calendar is integrated to the home Google system.
Using alternative health with our child with AS: Diana Backhouse
This oral presentation will discuss the alternative health therapies we use with our child with Angelman syndrome. When Timothy was 2 weeks old, he became very sick and was given strong antibiotics due to a bowel infection. Two months later he got terrible eczema from head to toe and was also diagnosed with failure to thrive. From his struggles, we decided to investigate different ways to support his health rather than turning to modern medicine straight away. We have created a chemical-free living environment, we have modified his diet to target inflammation, we support his health and sleep using natural methods and he is currently thriving.
Marea the ageing Angel: Judy Bourke
Marea Ann Bourke could well be the oldest Angel in the world.
Marea’s health has been recorded for 67 years, 37 of these before her Angelman Syndrome diagnosis on 18th October 1989 when she was 45 years old.
37 years of health records are available for researchers.
Marea is able to walk short distances with the aid of a walking frame.
Marea understands most simple conversations, instructions and directions.
Marea has no real verbal language but is able to let people know how she feels with the use of body language and some basic sounds.
Marea had breast cancer in 2017 but now generally enjoys good health.
She has adapted to changes in her living situation, being unable to walk after surgery and being housed in a locked house/unit without access to the outside world, entertainment and activities for many weeks was a bit traumatic for her.
Marea loves to eat out at restaurants where she can watch people. She loves fish and chips, milk shakes, Chinese meals, and anything sweet.
Marea now lives in a purpose built house within a group of 6 houses as part of a large residential centre. She is very happy there.
Patience and Determination - The Key to Achievement- One Small Step at a Time: Joyce Wenmoth
This paper addresses the challenges a grandmother in her 60’s faced in taking on full time care of her 3 year old grandson when his family who were residing in Australia were stretched to breaking point - “No one can fix him, he’s broken and he’s broken us”. With little knowledge of Angelman syndrome but some knowledge of the New Zealand Health Care System and a lot of patience and determination bit by bit doors were opened to help this special Angel on a journey of achievement. Achievements are small but celebrated -“One Step at a Time”. This journey reflects on services obtained, the part played by his inclusion at a standard childcare centre, involvement with extended family and the community and culminates in his integration to school in 2018. Throughout this journey this grandmother exposes her grandson to everyday experiences and maintains a steadfast belief of “He can do it- it’s just going to take a while”.
Where There’s a Will……: Yejin Foster and Lynne Cousins
Since before leaving school William’s family has sought ideas and opportunities for William to sample, in order to help him have a valuable and interesting life. He has tried lots of things, many of which are on hold due to lack of suitable and consistent support workers, or other issues.
Early in his post school life his support coordinator came up with some good ideas. She helped source suitable s/workers. It has by no means been an easy task, in fact very frustrating at times. We are not just seeking a darn good babysitter. We were looking for a supporting agency that could balance William’s needs that are determined by the many unique aspects of AS, the importance of seeing each activity as his job, and the opportunity for skills development to help him become as independent as possible.
We will discuss some of his jobs and activities and how we found them.
We will mention the difficulty in keeping many of these connections.
Also will mention the importance of continually maintaining his schedule.
Not just set and forget.
What about you? Danneal Jez
What about you the carer? Where do you fit in? How can you create a life with joy? I hope by sharing my journey of finding joy and a sense of peace in my life that I can help give others some simple strategies to help themselves and their family too.
Our Communication Journey-Double Trouble: Laura Greene
Unsurprisingly our journey with communication began with zero knowledge of Alternative and Augmentative Communication (AAC), but since then has encompassed low and high tech AAC and a realisation that using symbolic language is not only a form of communication but it also aids the children’s understanding of the world around them and how to function. This talk will discuss the types of AAC used by our family, the benefits and challenges we have experienced plus some useful resources that you can try yourself.
Self-managing with NDIS: a perspective of the benefits and challenges: Mary Bills
Michael has had his NDIS package since September 2017 and the journey of self-managing those funds has provided many opportunities for his increasing independence. This includes moving out of home, and greater options for recreational activities and choice.
The presentation looks at some of the benefits and challenges of this NDIS option, such as building direct relationships with those providing support, and managing communication to enhance that support.
Challenges faced include finding and maintaining the right people, training new support people, and maintaining enthusiasm.
The vision has been to support Mike to have a life that any of us would want, and to move away from historical forms of shared living for people with disability. We’ll look at achievements, the impacts on choice, and flexibility in using funds.
There are challenges for family, and the presentation will also consider the time and skills required, along with future plans for sustainability of this model.
This is example of self-management for a person with AS and high needs - it’s not perfect, and there’s still a way to go, however, there are lessons to learn, and great leaps forward in the quality of life that Mike has achieved.