... tend to underestimate what the non-verbal person can understand and do.
This is largely due to mindset and also a lack of a feedback mechanism to let society listen in to the thoughts of the person with a verbal speech difficulty.
Bridging Social Gaps with Assistive Technology : The Story of Fong Ruo En
Ruo En was born with a congenital condition known as Spastic -Dystonic Quadriplegic Cerebral Palsy and Hypertonia. She is seven years old and attends the Functional Academics Programme at the Cerebral Palsy Alliance of Singapore (CPAS).
When her mother, Wendy Chong, first learnt about Ruo En’s condition, she was shocked. She shared, “I didn’t know anything about Cerebral Palsy and I really didn’t know what to expect of her medical condition. We read up as much as we could about her diagnosis but simply couldn’t get ourselves to settle with the idea that she has special needs.”
Ruo En’s condition affected her ability to verbalise and it also affected her ability to coordinate and control physical movements such as walking, independently sitting up and transferring positions. Wendy shared that due to her physical and speech limitations, it was a challenge for Ruo En to show others how much she understood.
“Some think that it is a waste that she’s born with this condition. If not, she will be a cute and loving girl,” said Wendy when asked about how people perceive Ruo En.
The physical limitation and lack of speech was a challenge for Ruo En to be assessed and it was only when she started attending the Assistive Technology (AT) training at SPD (formerly Society for the Physically Disabled) in 2014 that others around her have a means to see how much Ruo En knew. That milestone, coupled with the developmental progress Ruo En made from home tuition, soon affirmed that this little girl understood a lot more than what people think is possible of her and that cognitively, she is not too far delayed.
The AT training gave her a means to communicate via an iPad with a text-to-voice app and an adaptive switch and stylus. With it, Ruo En now has a feedback system for the world to hear her thoughts. During lessons, Ruo En’s home tutor will get her to use the iPad app to select or type answers to math questions, form sentences and learn spelling.
“Previously, she was using Picture Exchange Communication System (PECs) cards to indicate her wants and needs e.g. ‘I want to eat or drink’ and ‘yes’ or ‘no’ on a board. Now she communicates using a software called Touch Chat and it is installed in her iPad,” explained Wendy.
“It took us a while to finally find the right tool for her. The first device we introduced her to was the eye gaze. She didn’t like it as she uses her head movement rather than eye movement to activate the device. So the team (at SPD) moved on to switch control but the process of scanning took too long and Ruo En got impatient using it. It was about 1 year of trial and error before we found the right combination of AT for her. She can directly access the iPad now with the help of an adaptive stylus.”
When asked if people has since responded differently towards Ruo En, Wendy opined that “people still need to be educated that they have to be patient with her as she needs time to go through the buttons and also, her motor movement is limited.” She added that they are always happy to share how Ruo En uses her iPad to communicate so as to create better public awareness of how communication can be done in this way.
There are some limitations to the effectiveness of the current setup though. Wendy explained, “ The program is wonderful. But access to its usage is sometimes dependent on how enabling her environment is. For example, she can’t access the iPad easily in her bedroom as there is no suitable place to clamp it at an easy angle for her to use. Secondly, due to lack of availability of the same type of wheelchairs in the various places she has to go to - school, home and SPD - it is difficult to fix the iPad at the exact angle optimal for her use.”
Recently, Ruo En’s was invited to be featured in a local documentary, “Hello Singapore”, together with her therapists from SPD. The Channel 8 production will soon be screened on national TV. Wendy said, “We hope this will create more awareness about alternative communication devices that act as a voice for the child. That even if she is non-verbal, she can learn and participate in lessons and in social gatherings as the device helps to compensate for her lack of speech.”
Wendy wishes to reach out to parents as not many are aware of the services that SPD is offering. She hopes that in time, people like Ruo En will be given a chance to be in the academics stream in her school in spite of their inability to verbalise or write. She also wishes that special schools be more AT-friendly and for teachers to be AT-trained. Such will help seed more enabling environments for these children and “help unlock the barrier of traditional modes of communication.”
“We hope schools and SPD can work better together in combining expertise and resources to help these children.”
Wendy now looks forward to see Ruo En send her an email or text message. She hopes that eventually, her daughter can blend into society and be accepted for who she is and enabled to be the best she can be.