Living life her way: Helen’s story
This World Cerebral Palsy Day, we’re celebrating Helen, a much-loved...
How are you? What would you like to do today? What do you want for dinner?
For many of us, these everyday questions are simple to answer. If speech is your main way of communicating, you may say around 12,000 to 16,000 words a day and use between 800 and 3,000 unique words in everyday conversation. Speech helps us express ourselves, advocate for our needs, and share our wants, fears and hopes. But for more than 1.2 million Australians with a communication disability, being understood can take time, creativity and the right support.
As Speech Pathology Week begins, Sarah Robertson’s story is a powerful reminder of how the right communication supports can open up new opportunities to connect with others, make choices and take part in the moments that matter most.
Sarah has one-sided vocal cord paralysis, which means she can’t speak, although she is able to make some vocalisations when she’s excited. As a child, she learnt Makaton, a language program that combines signs, symbols and speech to help people communicate, but it is a form of signing that is rarely used or understood. Her fine motor skills have also meant that some of the signs she uses are not part of the program. To communicate, Sarah primarily uses made-up signs for words like mum, dad, house and baby, as well as some Auslan signs. However, she often relies on the familiarity of her communication partners, who can understand and translate for her.
As Sarah’s mum, Louise, explains, not being understood is a frustrating and often upsetting experience. “For someone who is nonverbal, communication is a huge barrier in being understood. Unless there’s something tangible that Sarah can use, such as a picture or an item, to communicate her needs or wants, she doesn’t always get a choice in things, and she can become frustrated and emotional when she is not understood.”
It was this information that helped one of Rocky Bay’s Advanced Clinician Speech Pathologists determine the best path forward for Sarah during intensive therapy session blocks at our Geraldton Hub. The therapy focused on practical communication goals using an Augmentative and Alternative Communication (AAC) device. Initially, Claire used the Hub’s clinical iPad to trial different vocabularies with Sarah. This helped Claire determine what features would be beneficial for Sarah on her own device, such as larger buttons, semantically based pictures, and something that was a little hardier, just in case there was a mishap. It also gave Sarah an opportunity to try a new way of communicating.
From there, they decided to start with TouchChat on a Nova Rugged device. At the beginning, Sarah was a little hesitant to use it, almost as if she was worried she might hit the wrong button. However, over the course of the sessions, Claire’s idea to personalise the device was the key to success, with the vocabulary linked to Sarah’s interests, relationships, routines and favourite activities. By the last session, Sarah was having a back-and-forth conversation with Claire about her name, age, favourite TV show (Friends!) and her pets. For Claire, one particular highlight stood out: the elation Sarah felt at the opportunity to finally communicate with other people in a way they could understand and respond to.
“It was amazing to watch her face light up every time she was able to express something she hadn’t been able to prior. She had such pure joy when she was able to communicate with others, and she would get visibly excited. I could see that she had such a desire to speak with people from our first time meeting, as she would reach out to me and point to things around the home. Once Sarah realised the power of the device, she had the biggest smile and was seeking out the device to use by herself. Sarah was so willing to try new things, and she has been so cheerful and engaged!”
For Sarah and her family, the impact this device has had is enormous. For Sarah, it’s the feeling of finally being understood and being able to make her own choices. She’s been able to talk to her support workers and make her own decisions about her daily activities. One of her most recent requests was a trip to the swimming pool, followed by a stop at McDonald’s! It has also given her the opportunity to get involved in more activities at her supported accommodation, such as choosing what they have for meals or group activities.
For her family, it’s the comfort of knowing that Sarah will have a way of communicating her wants and needs when they aren’t there to support her. It’s also the impact of knowing that Sarah is getting what she’s asked for!
“It is lovely to see that Sarah can have a choice in the activities that she would like to do, and she is very pleased to be able to contribute to the people who support her,” Louise explains. “It is also the simple fact that her support workers can ask her with confidence if she really does want to do selected activities instead of guessing. Sarah is usually very compliant, so using the communication device helps give them a clear answer as to what Sarah actually would like to do.”
And for the families of those who may also have a communication disability and are considering options for alternative methods of communication, Louise has a simple message. “It’s important that people know that there’s always something out there that can help you, no matter who you are or what part of your journey you’re at. Sarah is 45 and she’s being supported to learn something new. So never give up!”
“It’s important that people know that there’s always something out there that can help you, no matter who you are or what part of your journey you’re at. Sarah is 45 and she’s being supported to learn something new. So never give up!”
- Louise Robertson