Hong Kong Red Cross | Fall Down Seven Times,Stand Up Eight Live A Positive Life

Everyone is born equal – even those with physical handicap and sickness should be granted equal respect and protection. Disabled students, who have to endure long-term sickness and pain during their golden time of study, are a particular needy group in the society that requires our support. Day by day, not only do we assist them in their rehabilitation, we help to develop their potentials and build their self-confidence, in the hope that they can eventually integrate into communities and live life to the fullest.

Special education and rehabilitation service of the Hong Kong Red Cross (HKRC) are the real answer to this group of disabled students who fail to receive proper education through mainstream schooling. From setting up the first Hospital School in 1954, to later opening the Hong Kong Red Cross Princess Alexandra School (PAS), the Hong Kong Red Cross John F. Kennedy Centre (JFKC) and the Hong Kong Red Cross Margaret Trench School (MTS), two of which provide full boarding service, the HKRC has progressively expanded the number of hospital schools to a total of 18 over the past six decades, providing diversified services and facilities for the mass students in need.

Ever since its introduction of the “Hungarian model of Conductive Education” in the 80s, as well as the initial extension of the JFKC curriculum in 2001, the HKRC has always been a pioneer of special education service in Hong Kong. In recent years, adding together advanced technology and new devices such as the “eye-tracking mouse”, both the learning motivation and effectiveness of the disabled students are significantly enhanced.

Happy 2019 - I wish you all an auspicious and healthy year ahead!

In the past year, I have shared a couple of encouraging stories on how the Hong Kong Red Cross has raised awareness on the importance of disaster preparedness among the public and vulnerable groups through efforts on a wide range of humanitarian works. This time, I would like to walk you through another humanitarian service which we have been actively promoting throughout the last six decades, namely the special education and rehabilitation service.

As far as we are concerned, everyone is born equal. Just as how people with physical handicap and sickness should be granted respect and protection, students suffering from illnesses should also be given equal opportunities of holistic education, so as to help them develop potentials, enhancing their sense of dignity and building self-confidence. The real life stories which I am going to tell you in this letter are centred to Tsan-ho and Vincent. They are students of the JFKC, who are diagnosed with cerebral palsy and spinal muscular atrophy respectively since early childhood. Deprived of the abilities of normal movement, they had undergone a tough period in both their daily and school life, until they met and encouraged by teachers and school therapists to overcome barriers,uncovering a new world with the help of assistive devices and rehabilitation equipment.

I do hope that you can spare some time to read the stories of Tsan-ho and Vincent and the sharing on rehabilitation support by Cheung Sir, Head of Occupational Therapy Department, who has been staying close and providing support to Tsan-ho and Vincent. It is by understanding and by looking into the real challenges they face in growth and study that we can truly understand their needs and appreciate the assistance of technology and devices in alleviating their hardship.

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A Blink of an Eye, A Step to the World

“What is your mood on a rainy day?” asked Cheung Sir, Head of Occupational Therapy Department at the JFKC.

“Blue, I suppose?”

“That’s the common response. Not for Tsan-ho.”

A 19-year-old boy born with cerebral palsy, Tsan-ho has suffered from disabilities physically and verbally since early childhood, making him a heavy dependant on wheelchair and healthcare assistance.

Deprived of the ability to speak, eye contact and basic body language came as Tsan-ho’s major means of expression as a child. When he was later examined by occupational therapists and arranged with special classes, he learned to express himself with the help from computer system. But according to Cheung Sir, it was not until Tsan-ho switched from using a joystick mouse tailor made for special-needs students to the “eye-tracking mouse” in later time that he got to fully express his inner thoughts.

Ever since Tsan-ho joined the JFKC at the age of 5, Cheung Sir has been his company all along. No one takes pleasure like he does witnessing Tsan-ho’s growth and improvement through the years.

Never Judge Them with Your Assumptions

That rainy day, Tsan-ho was having progress controlling the “eye-tracking mouse” with his eyeball movement. When asked about how he felt, to Cheung Sir’s surprise, instead of “blue”, Tsan-ho’s answer was “hot”.

“I came to realize that in the past, he might have held back his truest feelings just because he knew he couldn’t accurately express them. We tend to associate a rainy day with gloominess, but to him, the rainy weather is the one thing that irritates him most. We later learnt that he had always been uncomfortable because of the humidity. Now that the ‘eye-tracking mouse’ provides a direct way for him to express his thoughts, we are very pleased. He is taking initiative to communicate with us.”

Even on the day of interview, everyone is surprised by Tsan-ho’s enthusiasm and activeness in answering questions with help of his “eye-tracking mouse”. When tired, he honestly expressed that he was “bored”. To Cheung Sir’s amusement, this is indeed a very promising transformation.

“For students who are in a severe stage of cerebral palsy, ‘eye tracking mouse’ really makes a difference by giving them a channel to present their deeper thoughts and needs. It’s true that we can sometimes tell their mood based on our experiences and the little hints we observe, but we might not understand all the subtle feelings deep down. ‘Eye-tracking mouse’ is a great communication partner.”

Get Fulfilled - Motivation Comes Along

Therapists thoughtfully designed extra sets of simplified interface with enlarged buttons, making things easier for Tsan-ho in his initial stage of learning.

The success in communication also increases Tsan-ho’s sense of fulfilment and enthusiasm to learn. “He used to be a passive learner who avoided trying out things. Somehow it was his way to avoid frustration - because most of the things in his everyday life were out of his reach. Now that the ‘eye-tracking mouse’ has helped him overcome his communication barrier, he shows a very positive change in attitude. With the recognition he gains, he becomes more passionate about trying and learning new things, and less susceptible to the idea of failure.”

In the past, Tsan-ho was a regular user of the joystick mouse. However, due to his wrist weakness and muscle strain that came as consequences of prolong usage, it took him so much effort every time just to make five to six successful clicks in half an hour, notwithstanding other time-consuming steps like entering the submit button. No wonder, using the computer had been a frustrating activity to him.

Now with the “eye-tracking mouse”, the only thing Tsan-ho has to do is look at the sensor until it detects his sight. From there, he gets to start controlling the mouse with his eyeball movement and input data into the computer. Muscle pain free and easy to pick up, it took him just a few months to get familiarised with the basic operations.

“Don’t underestimate these little steps, eye tracking is harder than you think especially for students with cerebral palsy. The first challenge is keeping their head and shoulder in a fixed position. This will require a significant level of energy and a lot of concentration. Tsan-ho has great potentials on this though. At first he was unable to focus on one point, either did he blink too often or look elsewhere which stopped the sensor from detecting him. But he has gone from there to now being able to make accurate choices step by step. It will just be a matter of time. I can’t wait to see him fully manipulate the skills to explore the world in one to two years.”

Popularization of Technology
- A Good News for Special-needs Students

Tsan-ho learning to use the “eye-tracking mouse” in more areas of study. In this school year, he will try to taking exams by himself without having support of amanuenses.

As a matter of fact, “eye-tracking mouse” is not only a communication solution for cerebral palsy patients like Tsan-ho, but patients who suffer from muscle related diseases in general, such as spinal muscular atrophy. As much as Cheung Sir has witnessed, ever since the JFKC first introduced the use of “eye-tracking mouse” in campus seven years ago, the device has helped a large number of special-needs students on their studies, also given them a channel to explore the outside world. Cheung Sir is very pleased about this.

“Back then it wasn’t a popular technology in Hong Kong, an “eye-tracking mouse” and the relative software would costed $80-90k together. And that’s not the end. You got to carry out testing with professionals regarding implementations in campus. It truly has been a long way coming. We are happy that technology is much advanced today and a mouse is just costing around $20-30k.To us, the cheaper the better because more students can be benefited from it.”

To date, 5 students are taking turns to use the only computer with “eye-tracking mouse” installed at the JFKC. Cheung Sir hopes that the device isn’t only the door to knowledge, but the door to communication and mutual understanding for them. “We all wish to be felt and understood in some way. If special-needs students can express themselves well, others can better understand their needs and hence address them with the right support. This is what will excite us most.”

Mobile Hoist, More Mobility for The Everyday

The JFKC has always provided holistic education and rehabilitation services for students with physical and multiple disabilities. While most of them are diagnosed with communication impairment and hand function impairment, half of them find great difficulties in walking and require aid or wheelchair for mobility.

Vincent is a Secondary 3 student who is born with spinal muscular atrophy. Deprived of nearly all his limb functions except a little for the hands, he relies largely upon his family and the wheelchair to get around.

Despite his disabilities, Vincent has been an optimistic teenager with satisfactory academic results. The biggest challenge, to him and his family, is the part on daily living. Without his wheelchair, Vincent could not walk without help. Between bedroom and washroom, or just between his bed and his wheelchair, he needs his parents to lift him on the arm and assist him on the side. This wasn’t so much of an issue when he was a child. But as he grows to be a much heavier young man, lift-walking is no longer an easy task for the carer.

Even during his physical therapy sessions at school, Vincent has to successfully get on the equipment with help of two to three staff every time. Time had been tough for him and his caregivers in the past. Fortunately, overseeing the difficulties and inconveniences faced by students like Vincent, years ago, the school has widely installed ceiling hoists and mobile hoists in the campus to cater for different situations.

Vincent is an intelligent and self-driven learner. In his spare time, he plays an assistant role in the homework consulting sessions for students in primary section.

Although a large area of the JKFC campus including the Occupational Therapy Training Room and Hydrotherapy Room is already installed with ceiling hoists, the school is still lacking fund to extend ceiling hoist coverage to the primary section in the New Wing. Meanwhile, Vincent and other physically fragile students have to bring along the only two mobile hoists from the Old Wing whenever they attend activities in the New Wing, which brings about a lot of inconveniences.

Physical Weakness Doesn’t Affect Passion for Learning

Ms Fung, Occupational Therapist who looks after Vincent, is also concerned about the daily difficulties encountered by Vincent’s carers. “He doesn’t have control over muscles of his entire body. Therefore when it comes to lifting, the carer will have to give extra efforts to support a body weight that feels heavier than it actually is. You will need absolute focus otherwise you can get hurt or even get low back strain.”

To caregivers working at the front line, hoist is a great assistance to prevent accidents. While to Vincent, hoist has made his life better by making movements more comfortable.

“Caregivers used to lift me up tightly on my armpits. I know this is to better support me, but at times it makes me feel uncomfortable. Now with the hoist, getting around becomes much easier.”

Vincent is aware of the inconveniences brought by his physical weakness in many aspects of life, and this pressurizes him at times. One example is his recent moving into a new home with his family. Not with the ceiling hoists installed yet, Vincent’s parents have to resort to the old sweltering way of lifting him around.

One time, Vincent’s mother accidentally tripped while lifting him and got a bone fracture. But on returning home from hospital in her plaster cast, she still insisted to look after her son. “I felt sorry. Mum wouldn’t have got hurt if we had the hoist earlier.” The accident is a case in point to show that hoist is more than a tool of convenience to the disabled students. To a large extent, it also helps to alleviate their mental stress and foster their well-being in other aspects such as learning.

Vincent’s hand muscles have further deteriorated, making it harder for him when using a computer and wheelchair. Knowing Tsan-ho’s success in using the “eye-tracking mouse”, Vincent shows great interest in the device too in assisting his study. For this, Cheung Sir is very pleased.

“Encouraging active learning has always been an aim of education. When our students overcome their own congenital limitations, they are on the path to discovering a larger world. What we do is to provide a suitable environment with all feasible assistance to our students. It seems that all our hard work has paid off.”

Now in his 19th year of service at the JFKC’s Occupational Therapy Department, Cheung Sir is happy to see his students uncovering potentials by positively facing their disabilities.