‘Special’ People and Us

Recently, I chanced upon a scene in a MediaCorp drama serial (Channel 8), involving an older woman, her daughter in her thirties and the latter’s daughter with special needs (perhaps autism). In the dialogue that extolled the glory of a mother’s love, the older woman offered to sacrifice her life to care for her granddaughter so that her daughter could pursue her career and the prospect of marrying a “good” man. This woman “lovingly” pointed out that her daughter should not abandon the prospect of a happy life with a “good” man just because of her daughter. For the older mother, her daughter’s only path to happiness lies far away from the young girl with special needs.

As I seethed with disbelief at the older mother’s statement, I held back my judgment as I waited with bated breath for the daughter’s rebuff of her mother’s “sacrifice” of her life with a passionate declaration for her commitment to her daughter. The rebuff never came. Instead, the young mother conveyed her gratitude to her mother and then stated with a heavy sigh that she would be reluctant to leave her own daughter. Both women then gazed and sighed at the young girl with resignation and sadness. Essentially, the young girl was considered an impediment to the happiness of all involved: whoever was saddled with the burden of caring for her would be sacrificing her prospect of a happy life.

The perspectives of these women triggered my sense of outrage at a deeply personal level. Four years ago, when I separated from my then-husband who had never come to terms with Sebastien’s autism, a relative reminded me of my dim prospects of forging another serious long-term relationship. Since then, I have had to entertain the pitying glances and sighs of relatives, acquaintances and some friends who express their ‘support’ for me by hoisting me up on the pedestal of martyrdom. My life – a single mother raising and homeschooling her autistic child – teeters on the brink of a tragedy.

Though I can understand where they are coming from, I would beg to differ from the following unquestioned assumptions encapsulated within their perceptions:

• In general, children with special needs are an encumbrance and a burden for their family and society.
• Such children are far too much of an inconvenience to impose upon anyone who is not biologically or legal to care for them.
• Thus, no “good” man, within the bounds of reason, could be expected to forge a long-term relationship with a woman whose prospects of happiness are doomed by the existence of an autistic child.

Being the mother of a moderately autistic adolescent with limited language, I can honestly tell you that my homeschooling journey has not only been paved with arduous and frustrating moments, but also precious insights to happiness of the most unusual kind. Every moment spent with a child with special needs, whether it is pleasant or not, is a challenge in seeing the world in ways that you have never ever seen before. Since his initial diagnosis at a mere 18 months old, Sebastien has been motivating me to think outside the box, step beyond the confines of my typical mindset and look beyond the obvious.

Before I saw toddler Sebastien do it, I never knew that one’s view of the horizon of the ocean could be completely transformed if one were to gaze at it by bending one’s torso and then turning one’s head sideways. Until I witnessed four-year-old Sebastien scanning markings and patterns on carpeted floors, I had not realised that they could be used for navigating one’s way through a gigantic casino resort where adults lose their way even with the aid of signs. Only when I ceased obsessing about Sebastien’s language delays did I begin to awake to the fact that “I love you” can be expressed in infinitely more powerful ways than words, via playful embraces, intertwining fingers and heartfelt gazes.

To me, one of the greatest impediments to this less travelled road of happiness is the caregivers’ lack of awareness of the extraordinary impact of their children on their lives. As a caregiver myself, there are days when Sebastien does something thoughtless that makes me explode in frustration and shake my commitment. But yet, as I regain my composure and take a step back, I will also come to realise that such awful moments have not only dwindled significantly in recent days, but also been replaced by many more of amusement, gratitude and joy. And then it will dawn on me – the prodigious amount of effort that Sebastien has been putting in all these years, alongside me, to live up to the challenges that the world and I impose on him.

So if you take a moment to think about your own children with special needs, I hope you, too, will be awestruck by the incredible odds that your children have managed to overcome to do the things that professionals told you that they could never be expected to do. Moreover, their effort has, in turn, inspired you to transcend your limited perspective, resources and strength to do the best you can for them. And over time, your journey with your special children has taught you many humbling lessons of life that have made you a better person than you could have ever imagined were possible.

Yet, unfortunately, even when caregivers become enlightened about their children, they will still have to parry the concerns and worries of family and friends with their stereotypical conceptions of these children as burdens. Their comments that reflect an inability to fathom how caregivers could genuinely love their children with pleasure and joy, however “deficient” or “damaged” they may appear to others, are often more upsetting to the caregivers than their children’s deficits.

Until we as a society recognise that people with special needs placed in our midst are blessings who offer us the opportunity to rise above and beyond our flawed natures, we will never treat them with the respect that they deserve, as with any other human being who walks this earth. Thus, in my bid to leave behind a world that will cherish and value people with special needs, I put forth this challenge to all of you, as well as myself:

Can we be humble enough to see our interactions with “special” people as learning opportunities to better ourselves? Can we be open-minded enough to see the world from their eyes? Can we be gracious enough to extend our help without adopting a pose of superiority? That is, can we ourselves strive to become better people by truly embracing these special people with love, compassion and respect?

I hope that we can all rise to the occasion.

©Choo Kah Ying 2009. No portion of this article may be reproduced without author's permission.