Changing your mind, change your life

by Heibie Wai

Aaryan Shah, a 17 years old boy born with Cerebral Palsy who finish his achievement with his disorders. Heibie Wai shares the story and the positives to people.

A mountain climb journey is bustling with Aaryan Shah, his parents and supporters in the beautiful New South Wales snowy mountains, Mount Kosciuszko. In 2015, Aaryan Shah begins his ‘Krazy Kosci Klimb’ marvellous walk to the roof top of Australia. ‘Krazy Kosci Klimb’ is the ultimate description of this climb. Getting to Australia’s highest peak, he is literally being on a high as he soaks in the epic views from Australia’s highest point. Yet, this is the second time Aaryan has achieved this remarkable accomplishment.

Back in year 11, Aaryan goes up to Mount Kosciuszko for the first time during the school camp. This time, there is a more meaningful reason behind the climb, since raising fund for the Cerebral Palsy Alliance is the main purpose of this challenging activity. With the support of his family and supporters, he is undertaking the ‘Krazy Kosci Klimb’. Having the sponsor from Clayton (a law firm in Sydney), there is a special wheelchair with harnesses attached to the front and back to push Aaryan ten kilometres up and ten kilometres down from the top of Australia’s Mount Kosciuszko.

At the moment Aaryan reach the top of Mount Kosciuszko, the only words he says are “I am good”. However, the emotion at that point is always speechless and beyond words. The family, backup team, himself has done a great job together to work towards this successful achievement. Aaryan keeps motivating the team all the time and leading the team into a joyful atmosphere, bringing sweetness into this tough and challenging trip. As the wise man once said, one way to gain new insights from some old skills is to learn again. Aaryan experienced the same when he travels up to Mount Kosciuszko during the event. With different teams and supports, he felt more comfortable through the steps and tracks in the second time and the trip has not been as challenging for him, comparing to the first time.

This is an inspiring story from a boy who lives with cerebral palsy for years.

Cerebral palsy is a developmental disorder which a person’s muscle activities and postural balance would be affected due to multiple reasons. As a neurological disorder, signals from the brain to activate muscles are sent to the body at the wrong time due to limitation of oxygen received in the brain. It affects people in different ways, for example, reduced muscle strength and postural coordination, limited muscle joint movement and therefore, further affects the independence of the people in terms of self-caring in daily life. Cerebral palsy usually comes with other behavioural and developmental disorders, such as perceptual impairments, learning difficulties and language-speech disorders, which further hinder the school-readiness and community participation of a child with cerebral palsy. Cerebral palsy is not a disease, but it is a condition that brings a permanent damage to the brain.

Aaryan has been experiencing muscle tightness in his limbs, especially his left hand and legs, which further affect his balance and results in limited mobility. During the time of interview, Aaryan claimed that he needs high concentration in talking and controlling his posture simultaneously. Receiving short signals in the brain contributes to these symptoms and he has been compensating his daily life with his persistence, beliefs and strong mind.

To ensure a better quality of life for the people with disability, medical teams and allied health professionals work together to provide treatment, compensating strategies and education to family and the person himself. Physiotherapists aim to maintain and strengthen people’s muscle by providing exercise program, while occupational therapists focus on personal self-caring activities, wheelchair prescription and home modification such as designing ramp and rebuilding bathroom in the house.

 “It’s a hard thing to accept that your kid is not gonna like everybody else as well. They both are very high achieving, but in different ways as well, so you can’t compare the two children, you got to just let them be in developing their own way”, Aaryan’s mother, Rima Shah said.

In order to enhance Aaryan’s physical movement, he start playing Boccia six years ago. A teacher in year 5 told him he should try shooting and this start his Boccia journey.  At the beginning he has no idea, afterwards the head coach talks to him, pick him up and invite to some competition. Boocia is unusual among the Paralympic sports in that it is an event created specifically for wheelchair athletes, rather than adapted from an able-bodied counterpart. The sport requires player sitting in the wheelchair and shoot the leather balls. the aim of the game is to throw the coloured leather balls (red or blue) as close as they can to a white target white jack ball.

Last December, Aaryan went to Taiwan for the Boccia Regional Open competition, competing against several countries including those high-level rivals from the Asia region, and eventually win a silver medal with the team. For the preparation of the competition, Aaryan trains six hour per week including swimming in the gym and other general fitness. The strategy, training and execution in Boccia helps him to develop and engage the community through participation and recreational opportunities. Boccia contributes Aaryan a strong sense of satisfaction and boosts his self-esteem and confidence. Sport is a medium to achieve his goal, which is hoping sports to become more suitable for people with disabilities and lead the society to treat them equally.

“It’s still a long way… I wanna go to the Paralympics if I can, it does like a long term I can go”, said Aaryan.

Aaryan spends most of his life fighting against cerebral palsy, but he never let this barrier affect his willingness to learn and achieve more. Aaryan is currently doing Higher School Certificate (HSC) and focus on working towards getting into a media degree in journalism as his future career. His aim is to do sports broadcasting as he inspired by Boccia.

The educational journey is a challenging time for Aaryan as the huge amount of work spring up quickly and all at once towards him. He studies different subjects like all other mainstream student, mainly essay writing subjects and physical education. Students with cerebral palsy usually takes two to three years in HSC for transit to the university. However, Aaryan spend only one year as typical students. He studies three to four hours a day and the large amount of additional time and resources help him with a disability learning skills and meet the educational goals. By accepting his personal disability needs, his confidence positively affects his academic progress in the school.

There are many of the barriers and attitudes towards Aaryan with disabilities persist. However, his story seen many positive changes to get people with disabilities physically active through educational and recreational opportunities such as schooling and doing sport. Cerebral Palsy is a long-term disability and difficulties come across themselves, parents and people in the society.

“I think I just let him live everyday as it comes, and just wants him to give the best life of all, just want him to get through each of the different masters for him and stuff like that”, said Rima Shah.