THE theme for International Day of Disabilities 2020 is appropriate – "Not all disabilities are visible” – and given that many disorders are not immediately apparent, such as mental illness, sight or hearing impairment, diabetes, brain injuries, neurological disorders, learning differences and cognitive dysfunctions, this theme is timely.
As the mother of a special child diagnosed with dyspraxia, another invisible disorder, I can sympathise with the plight of parents all over the world, who have to deal with members of the public who sometimes are unaware or appear unsympathetic due to lack of awareness.
When Preeya Nanthini Doraisingam was born, 30 years ago, she appeared normal in every way. The only outstanding aspect of her overall behavior was her extreme quietness, no crying at night and she slept nearly the whole day.
However, that was not much to celebrate, given the fact that Nanthini hardly emitted baby sounds or gurgled, cried or laughed. This was a cause of concern as time went on.
Around two years of age, Nanthini’s inability to vocalise simple language and her slowness when it came to walking became a topic of conversation between her father and I. On top of which, to make matters worse, Nanthini developed a severe squint in her right eye, which then meant we had to return to Malaysia from Brunei, where we were working, to sort out these pressing matters. The eye operation was carried out almost immediately as Nanthini was turning three and any further delay might result in the squint being irreversible.
Then began the long, frightening journey to discover the nature of Nanthini’s disability. At Singapore General Hospital, across the causeway, it was even more puzzling as the series of tests that were carried out showed no known medical conditions that fitted Nanthini. When the psychological tests were completed, we were informed of the global delay in her developmental chart of growth. The psychologist suggested that we start immediate treatment for Nanthini in the form of occupational therapy, speech therapy and one to one teaching to improve her reading, writing and speech skills.
Over the next 10 years, Nanthini was sent for a variety of skills training, while attending private special needs schools, Centre for the Achievement of Human Potential, Future Mind Centre and finally, Malaysian Association of Guardians for the Intellectually Challenged (Magic). All the while, I still did not have a definite diagnosis but it was Mrs Ragbir Kaur, Malaysia’s first speech therapist, who spent hours doing speech therapy for Nanthini, who hit the nail on the head, when she said Nanthini exhibited symptoms related to dyspraxia.
That sent the whole family into a frenzy, what on earth was this dyspraxia? In the Oxford dictionary, it is classified as a “developmental disorder of the brain in childhood causing difficulty in activities requiring coordination and movement”.
The most affected aspect of Nanthini’s learning was her speech. She appeared normal in every aspect and would engage in activities but in the classroom and outside, Nanthini had difficulty vocalising. This led to many relatives and friends being confused as Nanthini appeared normal in every way. As she grew older, I realised that Nanthini’s ability to understand or receptive speech, as they labelled it, was far higher than her spoken language. Thus, I embarked on the long process of teaching her new skills by action rather than relying on her speech to gauge her understanding.
As time went on, she became better at executing instructions and today has attended hotel training at Westin Hotel for two years when she attended Magic. Over time, she attended lots of activities and picked up a variety of skills, the most proficient today is her love of art and art related activities.
Everything she learnt had to be taught as a skill – swimming, cycling and even hiking.
At her sheltered workshop in Wisma Harapan, where she works, Nanthini was chosen to complete a programme in art which she did in more than four years. Today she can complete works of art independently. Some have been sold and the other paintings obtained rave reviews and so Nanthini has come a long way from being diagnosed with dyspraxia.
Today, my advice to all parents whose children have been diagnosed with dyspraxia is to carry on educating and doing your best to expose your child in every way to the real world as that is the challenge.
Also, do not be affected by labels as they are just a means to an end, and anyone can surmount barriers if they put their heart and soul into offering the dyspraxic child a future in a chosen field.
Happy International Day of Disabilities - may the awareness continue to grow. – The Vibes, December 3, 2020
