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The One Thing That Keeps Me On My Knees

Life

Life-learned lessons, relationships, marriage, faith, lifestyle, and everything else in between.

The One Thing That Keeps Me On My Knees

Debora Manusama

Everybody has that one thing that keeps them on their knees. That makes them pray, that keeps them grounded. Because even when you're doing so well in one area of your life, there must be another area where you're struggling, where life gives you lemons. Well, what I'm about to share in this blog post is my lemon.

For months, I've been battling with the idea of sharing this part of my life. And I wanted to make sure that I do this out of love and not out of the need for attention. 

And when I'm finally confident that I'm in that good space in my heart, I know I need to share this. So here it goes....

1. The Diagnosis

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When you first find out that you're gonna become a parent, every good thing that you could think of wishing to another human being, you'd wish for this child that is growing inside of you. You'd want he or she to be better than you, to have a better childhood, to be the one who cures cancer, win Nobel prizes or maybe a Grammy, and just be SUPER. It's not that you're crazy. You're simply hopeful, because nothing makes us think of a new hope than seeing, let alone participating in, the birth of a baby. 

So when you find out that there's something "wrong" with them, it's usually painful. Sometimes even bitter and depressing. Because this child is your hope, your dream,  and  your everything. 

Well, my world was turned upside down on October 2017, when a developmental paediatrician diagnosed J with ASD. I mean how could he?

J is in the high-functioning side of the spectrum, so he is not in "the fog" and he is actually very social. But still...It was not what I expected at all...

But to tell you the truth, I had seen the signs here and there from early on, I can't deny that. I could tell that he was different from the start, but a diagnosis made it so official. And I refused to accept it. So for months, I didn't tell anybody, not even my own mother. 

Which brings me to my next point. 

2. The Struggle

One of the things that concerned me the most almost immediately was how people were going to look at him and us as a family if they knew....Are they going to look down on him? 

Growing up in Indonesia, where most people are not educated about ASD and would actually use the very word to make fun of somebody who's "lost in their own world" (playing with their phone) or someone who's socially awkward, discouraged me. People in the spectrum are usually viewed as people who are "less than", weird, and just almost retarded. And that kept me from wanting to open up. 

For months, I refrained from discussing it with my families and friends back home. I didn't want them to look at J in a negative way. Because he is my HEART. And the thought of anyone thinking less of him just crushes me...every time... 

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Overcoming the stigma, dealing with the world outside of our comfy home -- that's probably my biggest struggle. I stopped seeing a few friends whose kids are not in the spectrum, because I still get anxious when people stare at J, whenever he gets too excited over the simplest things in life like his favorite food or favorite sound. I remember feeling so ashamed and confused when he threw himself onto the floor of a supermarket, because he wanted lemonade and I didn't give him some.

And when neurotypical kids refuse to play with him because he's different, I feel like flipping tables. Which brings me to my next point...

3. What You Can Do To Help 

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a. Rethink the Norm

I assume that you are probably a neurotypical person and your kids/nephews/nieces are too. Great, congrats. I am too. But remember, we are not the "normal" people, so stop calling ourselves that. Because seriously, what is "normal" anyway? Who gets to define what is the default, what is the "right way" to be human, and what is the acceptable way to think? People in the spectrum focuses differently, thinks differently and in a lot of cases feels differently. No wonder a lot of them turned out to be some of the world's most famous scientists and musicians like Albert Einstein, Mozart, and even Steve Jobs!  So next time you look at somebody with special needs, please remind yourself that you're not better than them, or that your kids are NOT better than them. Avoid talking about somebody in the spectrum or somebody with special needs in a condescending way, because your kids will catch that, and will adapt that as their habit too. 

b. Get Educated About The Issue

There are a lot of good resources out there about the spectrum. Read them! Why? People in the spectrum are a growing population and sooner or later you are going cross paths with them (or their families) one way or the other. So prepare yourself! 

c. Educate Your Kids/Friends/Families  About The Issue

Just like you're responsible in informing your kids about how humans come in different complexions, sizes, shapes, religions and sexual orientations, I belive it's time for us to start telling our kids about NEURO DIVERSITY. Because it's a real thing!! Nobody thinks alike. We all think differently, and people in the spectrum just think differently so no need to be scared or confused by them. Just like some people are Asian, some people are black, some people are gay. Well, some people are in the spectrum and that's OKAY! Prep your kids before you go to public places, so they'd be aware of this and not freak out. 

d. Pray for Us and Check In On Us Every Once in A While

We might look tough and patient, but deep down inside, parents whose kids are in the spectrum deal with a lot of stress daily. Some days we have it under control, but somedays, that dark cloud can feel heavy, and we just need you to check in on us, pray for us, and don't act weird around us. Just be there for us, and stand up for us. 

If you're confused, please ask us questions, but don't get weirded out and walk away. We'd love to be your friend. 

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4. The Hope 

Above it all, I am hopeful that God, who began the good work in J, will continue it. So I don't put my hope in doctors, dieticians, essential oils, or even pills. My hope is in Jesus and I know that He loves J even more than I love J. I know He sees my tears, my pain and aching, and I know He is on the move. 

As hard as it is to say this, I am grateful for ASD. It keeps me on my knees. And I know that it is only when my knees hit the floor, that I can touch the sky. 

Whatever you're going through, please know that you're going to be okay. Because there is somebody bigger and higher than you who's got you in His hands. And you don't have to worry. 

Happy Autism Awareness Month.