her voice

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{image is a photo of Brooke and Rhema, hugging}

Saturday …

We’re late to the Russell’s, as usual. Brooke’s blood sugar had taken a nose dive and we had to make an emergency detour to find her food on the way.

When we finally arrive, there’s a flurry of activity. “I missed you”s and hugs and “Gosh, you look more and more like your Mama every day”s.

Rhema’s nowhere to be found.

I follow a hunch and find her in the playroom downstairs.

I smile and tell her how good it is to see her.

I ask if I can sit with her.

She doesn’t appear to take in my words. There’s no outward sign that anything I say has meaning. I know better.

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{image is a photo of Rhema and me in the water last summer. We are both grinning from ear to ear.}

I sit on the floor beside her chair and smile up at her. I offer my hand, palm up, letting it hang in the air just in case. She grabs it with a warm, deliciously greedy hand. She hooks my thumb between her pinky and ring finger and pulls it into her body. She sings her soft Rhema song. Always, she sings.

We sit.

She looks down at me and returns my grin with every part of her face and all of her being. She hums and rocks and adjusts her fingers, tightening her hook on my thumb, then again. And again still.

“I’m so happy to see you, sweet girl,” I say. “I’ve missed you.”

She takes the television remote from the table and presses it into my hand.

“You want me to put something on?” I ask.

She presses my thumb into the Enter button.

“Gotcha,” I say, “Let’s see what we can find.”

I fumble with the remote, trying to get out of the cable guide and into live tv. It’s not working. She presses my thumb into the button again and again, but it gets us nowhere.

“I’m working on it, kiddo,” I say, “We’ll figure it out together, okay?”

She presses my thumb into the button again.

“That button isn’t working,” I say. “Let’s try this one.”

There is no obvious indication that she hears me. I can only trust that she knows I’m trying.

I finally get to live tv, then wander through the channels looking for something that isn’t C-Span or Law and Order. She pushes my thumb into the remote as she rocks.

“Let’s see if we can find something you’ll like,” I say.

I manage to navigate our way to the Disney channel. I know she likes kids’ shows, so I hope this will do the trick.

Jeneil comes down the stairs. Rhema hands her the remote, pressing her thumb into the center button. Jeneil switches to On Demand, finds the channel that Rhema likes. I wish I could have done the same, but there was no way to know what she wanted, if that is what she wanted.

“Sorry, sweet girl,” I mumble.

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{image is a photo of me holding Rhema in what I believe is 2010. She has her fingers threaded through my hair. Her Daddy, Brandon, is smiling in the background.}

Throughout the day, there will be so many more times when there’s no way to know what she wants. She hands me the remote. She wants to watch television. But what does she want to watch? She sits in the car. She wants to leave. But to go where? She covers her eyes. She’s overwhelmed. But by what? She softly cries. She’s hurting. But what can we do to help? She sobs and lashes out. But what hurts? What’s frustrating her? What does she need? What can we do to make it better?

I have never seen a human being work harder to see the world from another’s perspective than Jeneil does. Every single thing she does is driven by love and an overarching, fundamental respect for her girl. Everything. And yet, even she is so often at a loss to know what to do, how to help.

Behavior is Rhema’s only language.

It isn’t enough.

When we left, she was still crying.

I cried too as I said goodbye.

My heart aches for that child.

Not because she’s autistic. Please don’t ever think that’s why.

No one could pity her constant song, her whole body interaction with the world, the beautiful, sacred, perfect — and autistic — essence of HER.

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{image is a photo of Rhema running through the sprinklers in our back yard in 2009. Her entire body shouts her joy.}

What breaks my heart is that she has no way to make herself understood.

She doesn’t need to be cured of who she is, as if that were a thing.

What she does need — so palpably, so urgently, is help finding an effective way to tell us what she wants, what she needs, what she loves, what she hates, what she wants to eat and wear and buy and do and where she wants to go and what she wants to watch on the damned tv.

Her frustration is tangible.

And imminently understandable.

I am endlessly amazed by her patience. She has far more than I would – than I do.

I don’t feel sorry for her for experiencing the world differently than we do.

I feel sorry for us for not having the ability to understand what she sees.

She’s not missing.

She’s not gone.

She’s not a tragedy or a scourge or a burden.

She’s a beautiful, bright, loving girl who is right here.

Hurting.

And terrified.

And desperately overwhelmed by a world that doesn’t fit, nor try to fit.

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{image is a photo of Rhema, Hope, and Brooke in the arts and crafts studio of a local play space.}

She needs help.

She needs it now.

She needs – she deserves – she has the RIGHT to – a voice.

This, I believe with everything I am, is where we need to start.

Not by speaking for those who can’t yet speak for themselves but by finding ways to enable them to speak for themselves.

What haven’t we thought of yet?

Where is the lock to this key*?

For Rhema, and for her Mama who would go to the ends of the Earth for her sweet girl, I pray with everything I have that it’s here.

*not a typo

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{Jeneil and Rhema on a hayride we took together at an orchard near their house. For a million reasons, it was one of my favorite days ever.}

16 thoughts on “her voice

  1. Oh that we could snap our fingers and BE what we need to be to relieve some of her frustration…. Some day SOON…. We promise that we won’t quit… We have your back Rehma, and all that need our anonymous support… G’Ma in SC

  2. What an amazing young kid! Thanks for sharing Brooke’s friend with us and you for having ways with words; I mean an amazing writer!
    I have a 14 year old who is non verbal and we go through this experience all the time. We just got him a AAC device to help with communicating his needs/intent. The only problem with this is it doesn’t seem to have all the answers. But my kiddo is a harder worker, he will keep working until I can come up with intent. The joy and smile on his face when I finally “get it” is amazing!

  3. Rhema is an amazing girl from an amazing family. If anyone can find a way, they can and, I have no doubt, will,

    Love you,
    Mom

  4. Love that family. So thankful to “know” them–at least through email and letters (and kinda jealous that you see them in person 🙂 ). Your tribute to them all is lovely. We’re praying here, too.

    • i never like to gloat, but spending time with them is one of my favorite gifts 🙂 i hope y’all get the opportunity to share space too 🙂 xo

  5. I hope and pray RPM is the answer. I’ve been hearing so much about it recently and I’m intrigued. For us, the answer was AAC. I found an amazing app called “speak for yourself” (which was recommended to me by Lydia from Autistic Speaks.) We had tried and failed with other communication apps. But this one is different. We got a dedicated iPad, researched how to teach it. I started at home, got her using it, then got the school on board. Cymbie has been using it for 8 months, and it’s changed our life. Cymbie is 7.5 now. And while she has spoken words, they are rarely reliable. There is so much more in her mind then she is able to say. She is so much more than her wants and needs. The echolalia and scripts abound, but we are far away from conversations. From her being able to tell me her likes and dislikes, and what she dreams about. For instance, I just recently found out she is fascinated with Octopuses. She likes the planet Jupiter, and prefers watching YouTube music videos of Hosier songs and Sia to Sesame Street. Her favorite things to do besides swim are the zoo and bowling.
    My point is I would never have known any of this, if not for Speak For Yourself. We are lucky enough to live an hour away from the SLP who created the app. And I’m thrilled that she has come in to do training and will be working directly with Cymbie and her teachers on consult for the school come September.
    I’m rambling now, but I just want them to know that I get it, and I relate. And I know the pain and hurt at watching your child so frustrated because they just can’t communicate. And behavior becomes the most reliable form of communication.
    Not only is my daughter happier and calmer, but the pressure to speak is off, and it is a huge relief for her. With that pressure off, she is learning and using more spoken language when she is able. It’s amazing to watch her teach herself new words with the app. Whatever she is most comfortable with and what works for her is what matters. I’m just grateful she is able to communicate so much more to us now, and that ability will continue to grow with time.
    This was a very long winded way of saying and sharing what has worked for us. And I get it. And I pray they have found the keys and tools to lessen the frustration. And the power of communication, for Rhema.

  6. I love “where is the lock to this key”.
    So very obvious that Miss Rhema is a key. A very important key. She just needs to find her lock to open great vistas!
    ❤ ❤

  7. “Where is the lock to this key?” – oh my goodness, yes. That question right there sums it up perfectly. This is a gorgeous, beautiful depiction of a brave, resilient little girl. Let’s all never stop working and searching until we find all of the locks, for all of our kids. ❤

  8. Not sure what all they have tried or not, but American Sign Language is a wonderful option….if the people interacting with her get fluent too. As an interpreter for deaf children many of my kids parents aren’t fluent and it falls on me to have those hard conversations with them.

  9. Hi Jess… I know when the body talks louder than words. How old is Her Voice now. I have been there and seen it all and am there again. My youngest is six now.. And I’ll tell you something from my heart.. Only a mother and perhaps the father can know what our children need to say.. The world through their eyes.. No services can compensate for that.. With time will come other things but for now it’s them. Alongside that our discussing it will help because we are parents going through it and gone through it.
    If she taps and communicates then that’s what we listen for. And we listen not with our ears but our hearts. Close our eyes and listen. The tap is the heart beat.

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