Tuesday, September 5, 2017

Perfectly imperfect.


(This is from my phone notes from September 2, 2017)  

I just saw a video made by a mom with a wheelchair-bound kid. The video tells a story of how one day, two curious kids stared & asked many questions to their mother about her special boy - why can't he walk or talk, why he looks like that etc and after the mother failed to silence them, he brought his boys to meet the special boy to say hi and she awesomely took the opportunity to educate them about special need kids.

The video talks about how moms with special need kids are used to the stares, and comments and whispers because most people are scared to engage with these special kids & the ones who are not scared, sometimes make inappropriate comments. 

Yes Noah gets stared at a lot. He doesn't need a wheelchair yet but a kid lying down doing nothing in a stroller does look a bit odd. Sometimes they are pity stares, sometimes they are loving but sometimes, believe it or not, they are shocked look. I mean come on, do you really live in your perfect little bubble that you never seen a non-typical kid before? Cover your shocked faces, aunties.

If you go to the therapy centers, especially those government-owned ones, you'll see a lot of these non typical kids with their loving family, so loved and cared for. But why do you rarely see these kids in the mall or at the park? This is one of the reasons! People often fear what they don't know. They give you pity stares, they openly show you their shocked faces, they ask private, inappropriate and sometimes judgmental questions (like, "he is 4 and still can't walk?", "ooh why don't you bring him to specialist / therapy/ bomoh or whatsoever?", "have you tried everything?") Sometimes when questions got asked lovingly and I am in the mood to answer, I'll explain shortly but precisely. But when they are unkind remarks, I'd just smile politely while grunting in the inside.

I understand that it is hard to be understanding when you've never been there. You may be sympathetic but you can never truly get it. I understand that I too, could have been one of those inappropriate aunties had I not been blessed with this journey. But community need to be educated and enlightened that there are a lot of special need people around us. And that it is OK to be OK with them and their own special ways.

So I thought it is beautiful what the mother of the two boys did. She educated them that there are people in this world that are born different. That just because there are none in their family, doesn't mean they need to be fearful or judgmental of one. That God made them different. That it is OK to be different. That it is OK to be OK with people who are different. 

It really is OK. We have accepted our fate and Noah's too but we have never ceased hope and prayer. We go to therapies and do everything we can to keep him happy and healthy and to help him thrive in his own non-typical, special ways. And it really is OK.



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