The Deafening Silence

My son Knox, five, lives each day with non-verbal autism.

He has said some words, many sounds, but there is no consistent voice for him.

Consistently, there is a deafening silence.

A silence that makes my heart drop with each unanswered question I pose to him.

A silence that is so loud, it makes me want to scream in pain.

Scream in pain for him, for me, and for the voice that our family so longs to hear from him.

A silence that is so deafening, it is all I seem to hear. 

My son lives everyday, twenty-four hours a day, sunrise to sunset, around the clock, without being able to express himself verbally.

So each day, he continues to try.

My brave boy tries and tries and tries. He is so courageous and inspiring to me, this little boy. A modern day super hero, with the power of being overly stimulated by touch, yet his own voice is his kryptonite. 

When I dreamt of his life to be, I dreamt of all the stories he would tell, laugh through the  ‘Kids Say the Darnest Things’ stage, and pull my hair out with the annoying ten year old stage.

Now, as I bathe in my self pity, day in and day out, all I can do is yearn for his sweet voice and continue to grieve the loss of the life I had hoped for him. 

Alone again in my despair, he gets sick. Sure, all kids get sick, they get better, they build up their immune system, and that’s that, right?

Not my boy. 

When my boy is sick, the hells rain down upon me. It’s a different type of sick. His pain is loud but the cure remains dormant, unknown.

How can I fix you, if you can’t tell me where you are hurting? 

Once again that deafening silence, rears it’s ugly head as I tumble to the ground. 

He’s five. He can’t point. He can’t tell me that he is in pain. He can’t tell me that his throat hurts, or his ears are burning. 

He just can’t. 

On those hard days, he will bite his hand, lean in close to my eyes, cry, then take both his little hands and beat both sides of his head repeatedly.

While he leans in close to me, I know his mind is screaming..

Please, fix my broken voice.

Fix me.

I die a little.

I die a little with each hard pound to the head. I die a little with each bite to the hand. As he gets older, the imprint of his teeth on his little hands gets deeper and deeper. As he gets older, the pounding of his fists on his head hits harder and harder.

If I can’t cure him, I can’t bare to see what happens next. 

I wonder if the sweet release of his voice will ever be able to produce the words he so desperately needs to.

He is hurting himself.

He is hurting me. 

As I go through this non-verbal autism journey, it takes everything in me to make it through. I feel like a 24/7 caregiver on speed, who MUST have super strength emotionally to handle seeing what I see, and who must physically be able to hold down a screaming seventy pound kid who can not tolerate any doctor looking into his ears.

I didn’t sign up for this extra stress or lack of sleep BUT it doesn’t matter. I don’t have a choice. He needs me and I would do anything for him.

I am not a religious person, but at times I have broken down so deep in my pain and asked God to please fix him.

Fix his broken voice.

Fix this deafening silence, it’s too loud for me to bear anymore. 

I have gotten accustomed to swallowing that big lump of emotion down into the pit of my stomach, to go about my day, waiting for an opportunity to release it all.

I have to choose my moments wisely, though.

I need to be strong for him. He can’t see me cry.

This emotional release will stay buried deep but will creep up on me in waves. Beyond my control, the waves of emotions will hit their peak and I can’t swallow my pain anymore. 

Tears flow down my face and my neck is wet with worry. How can I be okay, when my poor sweet baby boy is not? 

BUT the truth is, I don’t care if I will ever be okay. I just want my son to be. He’s suffering and I can’t fix him.

This pain, that is so unimaginable, unless you live it day in and day out, it’s so hard to explain to another person.

Here is the honest truth of it all..

I just feel helpless. 

Enough. Enough of the self pity, I could do this all day but I just can’t let myself go there. 

Until his voice is finally heard, I will continue to advocate his needs. There is no other choice.

The silence is deafening, but my fight for him will be louder.

It has to be. 

Written by, Darby Harden

My name is Darby. I am a mother, a friend, a daughter, a sister, and a college graduate. The most honorable thing in my life I do is being a mother. Each of my children are uniquely challenging and beautiful in their own ways. Two of my children are on the autism spectrum, both sides of the spectrum, one non-verbal, one verbal, Remi and Knox (age 5). Twins, who have a diagnosis in common but are so completely different in their day-to-day autism challenges, in addition to their looks.

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