In the early days of my son’s diagnosis of autism, I shared the news with an Ustaz whom I was close to, who has known me since I was a teenager.
He assured me that God does not test anyone beyond his limits. Having known me for a long time, he shared that he sees me to be someone with a high level of patience – a virtue much needed to raise a child with special needs.
He said then: “That is why God sent you and your wife a special child. He knows this child will be well taken care of. Your child is ‘anak syurga’ (bound for heaven) and he will bring along his parents to paradise.”
In times of uncertainty coupled with doubts and even fear, those words comforted me and became a source of strength.
I was still unsure back then, but I was certain of one thing-I will not fail my son.
It has been almost a decade since that conversation, and the journey of parenting my son, Aydan Ziqry, has been indeed challenging.
Aydan, who is 11 years old, is the eldest of my three children. My other two children, Aadil Haris who is eight years old and Amelie Sofia Hannah who is two are neurotypicals.
My wife and I frequently share our journey raising Aydan on social media including a YouTube Channel we started recently- The We Are The A Squad (do subscribe to our channel 😁).
We decided early on that we are not going to be embarrassed of Aydan’s condition. He has autism. He is different, but never less.
Beyond social media, we try to expose Aydan to as many activities as possible. It’s a tough balancing act, as we are also concerned not to inconvenience others, and at the same time keep Aydan safe, as we ‘show him the world’.
For example, Aydan gets bothered by loud sounds and chaos. So we have to be mindful and prepared if we bring Aydan to a wedding reception, a family gathering, a play or a concert.
He loves water playgrounds, but we usually try to find a time when these places are less crowded. Aydan is tall and big so he certainly looks out of place among the small kids.
Alhamdulillah, the experience of sharing our journey has been an enriching one. There have been criticisms and hurtful comments – mostly unintended and out of ignorance – but the positive feedback and support we have been receiving far outnumber the negative ones.
Family, relatives and friends have been extremely kind towards Aydan, with words of encouragement, accommodating his quirks and idiosyncrasies whenever we meet.
As a journalist, I meet many people in my course of work. I connect with most of them via phone calls, emails and Whatsapp messages. We could go months connecting without meeting face to face, even as we become friends on social media.
So when we have the opportunity to meet, they too almost always bring up Aydan and how they’ve been following our family’s journey with him.
Many of the people I interact with usually have nice things to say – how they have a lot of respect for my wife and I for raising Aydan so well and sharing our journey, and how we are blessed with “anak syurga”.
Those words are very comforting to us. They give us hope of a future for Aydan, where individuals who are different like him feel accepted and are able to live meaningful lives.
However, the reality is, parents of special needs children are not immune to moments of weakness and self-doubt.
For me, doubt creeps in, when I see Aydan struggle with his studies, grappling to communicate and to articulate his feelings.
Doubts creep in when I see Aydan flapping his arms, speaking to himself as a form of stimuli, absorbed in his own world.
These struggles sometimes end up badly, as Aydan becomes frustrated that he is not understood, causing him to remain unsettled for the rest of the day or worse, be triggered enough to have a meltdown.
And many a time, during these moments are when I find myself losing patience and succumbing to anger.
There are times when I am so exhausted dealing with Aydan’s behaviour. Sometimes I really do not know what he wants, what is upsetting him, and I am too tired to try because I have had enough.
And it happens. The words that I try to bury in the deepest and darkest part of my mind, are said: “Why is life so unfair to me? Why can’t my son just be normal?”
Regret then creeps in because it is also at this very moment when I remember that the problem is not Aydan, it is me.
I have failed my son.
Why have I not done more for him? Should I have spent more on therapies, forgo my aspirations for our family and devote our life totally to Aydan’s needs. Should we have moved abroad, to a country that is supposedly more autism-friendly?
So sometimes when people tell me how I am such a good father, how much respect they have for me and my wife, I cannot help but feel like an imposter, because there have been many instances I feel I have not been the perfect father to Aydan and my other children.
God however works in mysterious ways.
In those moments of anger, doubt and regret; when I feel I am in the middle of a storm, He plants His foot in the ocean, providing calmness and serenity.
The future is still as uncertain as it was a decade ago when he was first diagnosed, but one thing for sure, my special son will never feel alone and unloved. I know that I love Aydan with all my heart, and I will be there with him every step of the way until my last breath. And I know my wife feels the same way too.
I hope fathers (and mothers too) of special needs children can be free of this burden that we must be a perfect father to our special child. Being blessed with anak syurga, is an incredible honour but also a heavy responsibility. We should not make it more challenging by putting unrealistic expectations on ourselves.
We must know when we react negatively to our child’s difficult behaviour, when we lose our control and when we wish he is not born the way he is, it will not be the last time we will act and feel that way.
And this does not make us bad fathers. It just makes us humans.
Footnote: Hadi Saparin is Assistant to Editor for Malay-language daily, Berita Harian.