I have something to say….

The following video is is being discussed heavily in the autistic community right now. I want to share my thoughts on this video, but want to ask that you take a moment to watch it in its entirety before I do and then watch the video of Emma making her routine sounds. If you came here to read my CWO contribution, it is in the post below this one.


Emma Grace (it is loud):

I watch my daughter, who is autistic, make sounds that no one really understands. I watch her mouth click, usually to its own unfamiliar beat. I watch her hands move, her fingers sway next to her eyes. I watch her body move to a silent beat. I listen to her voice, loudly sharing what is on her mind.

I watch her play with her toys, making them dance across the floor in odd groupings. Lining them up “just so” while clicking and singing. I watch her gather all of the round objects in the house (balls, socks rolled up, etc), placing them in the basket with her pumpkins- she pulls out her pumpkin books and lays them on top of these round objects, and then rubs her hands on each of the round object while humming.I watch her swing on the swing, moving her fingers with the chain, tapping her tongue on the roof of her mouth as each finger passes over a link. I watch her in the bathtub, as she lightly rubs her hands across the top of the water while tapping the surface. I watch her eyes dance, shifting left and right never staying on one object too long.

I watch her. I listen. I see a little girl who shares every bit of herself with the world around her, without holding anything back. I see a precious child who’s voice is never mistaken, never withheld. Although it is loud, and often times alarming, it is very present- reminding us that she is still here. She still wants to be heard. She still has something to say.

I know that there are those out there who view her only as a disability. I know that these people exist, Ive met them first hand. I also know that Emma’s voice has just as much meaning as your’s and mine. Its awkward dance has just as much passion and definition. It’s unsteady flow does not negate it’s importance. It breaks my heart when I see people in the medical field refer to children like Emma Grace as “broken”, “retarded”, “Devoid”. It saddens me to think that there are campaigns in place right now that devastate mothers as soon as their child is diagnosed. I was so blessed to have the support system I had when Emma was first diagnosed. There is so much hope in this diagnosis. So much support and love. These children have voices, they have the ability to communicate, they just sometimes do it in ways that seem so trivial and unnatural to us.

All of these children have something to say, hopefully we will all take the time to stop and truly listen.

I am going to make a commitment to myself today. I will stop making excuses for my daughters voice. I will stop apologizing to those who find her loudness offensive. I will not confront nor will I acknowledge anyones dissatisfaction regarding her means of communication. I do this often, in the store or while eating out. I am self conscience of those around me, and their reaction to Emma. It hurts me to see the frustrations on their faces, and then I feel as if I have to explain that she really doesn’t mean to be offensive. She isn’t a bratty kid who is loud and needs discipline.

She is just being herself; a beautifully crafted little being who lives every day to the fullest extent.

(and likes to share her zeal for life very loudly!)

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Comments

  1. Beautiful!

  2. Anonymous says:

    I had a wonderful worship experience listening to and watching the 1st video. It was peaceful music to my soul.

    I loved hearing Emma Grace and I heard her loud and clear. She is expressing herself and I KNOW she has something to say.

    Her words are music to the ears. :-)