Notes so far

TREES HAVE MISTERY IN HOW THEY MAKE MUSIC
THEY MAKE MUSIC GLORIOUSLY
HOW THEY SING
TREES SOUND LIKE MUSICAL NOTES IN MY EARS
~Rhema

Rhema at age 2, listening to trees

Rhema at age 2, listening to trees

1) She hears music in the trees.

Yet when presented with verbal stimuli and asked to identify a tree in an array of four images (for e.g., a cup, banana, duck and tree) during a standardized assessment, she may or not be able to select the tree. Even though she loves markers and uses them every day she may only be able to demonstrate that she knows the function of markers with assistance and prompting by her teacher. In fact, she may engage in behaviors or seem to exhibit decreased attention when tasks become more challenging. Thus, she presents with “extremely low” receptive language skills. Year after year the evaluation scores are the same. The Peabody Picture Vocabulary Test – Fourth Edition may say she cannot label a tree… but now I know, I know, she has a poem about trees dancing in her head.

I’m so glad I know.

It scares me to think of how much I once believed and accepted assumptions about autistic people like my daughter – that she lacked understanding of emotions, that she needed to be spoken to in simple language and have things repeated over and over in hopes she might get it, that if she could not demonstrate that a hat is an item you put on your head then she must not know the function of a hat.

I’m so glad I know that tests, evaluations and experts have their place. But as Emma on Emma’s Hope Book wrote, “There is no test that allows me to show the creative ways in which I learn.” And that, “Believing in the potential of all students is not on any test.”

2) When I began working at home with Rhema, one of our biggest struggles, I thought, was in the area of attention. I wanted to write words on paper and show her how to use a pencil to point to choices on paper. She wanted to scribble intensely or shuffle the papers or erase whatever I wrote or break the pencil tips or bite the pencils, etc. Our learning time started as a tug-of-war over a writing utensil and usually ended with a pencil stab and a paper cut. One day I decided to remove all the pencils and markers from the room. I thought I would command her full attention once the distractions were gone. That of course backfired, too. I soon learned – with Soma’s help – that Rhema was attending all the while she feverishly scribbled on paper. So I let her color and scribble while I taught a lesson. When I asked questions, she learned to spell her answers very well.

In the beginning I was tempted to simplify the lessons. But I found that when we studied age appropriate material she became more engaged and so interested that she paused in her coloring to peer at what I was writing. This, from the child who is visually selective and has always struggled with joint attention.

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3) It seems miraculous. Rhema’s ability to spell and share her thoughts after so many years of silence. In fact, I asked her how she learned how to spell (because several people asked me and I didn’t really know.) She said, “I learned how to spell by noticing how letters worked.” She hums and rocks and needs continuous support throughout her day, she rarely makes eye contact and shows almost no emotion on her face. And yet in her words she communicates a depth, maturity, understanding and love that leave me speechless. Nearly every day tears of joy and amazement fill my eyes as she shares more and more with us. It’s unbelievable. And yet totally believable. It’s more than a miracle. She has worked so hard – almost every day for the past year – to be able to spell on stencils (and now type). And now we are blessed to see the fruit of that work.

Many years ago I read a beautiful piece by a father of a special needs child. He described his idea of erring on the side of “overbelieving” in his daughter. As Rhema’s parents, Brandon and I have tried to do that. The past couple months we’ve been able to get to know our girl in a way we could only dream of before… and we’ve discovered that our “overbelieving” was sorely lacking, that we’d been underestimating her all along.

And yet… and still she says to us, “Thank you for believing in me.”

So. All of our expectations have changed. The way we speak to her has changed. The way we envision her future has changed (-Rhema doing college level work someday is no longer outside the realm of possibility). The way we view her learning has changed. Now we know that speech – or the lack of – is not an accurate reflection of her intelligence.

As the father I read once said, ‘She has taught us that everyone needs people who love them enough to overbelieve in them.’

So far she has shown her own funny, amazing, Rhema-way of ultimately exceeding every expectation.

Gratitude

When Rhema uses her stencil board or types I try to record it on video. Below are snapshots from last night’s video as she spelled her message. See, feel, hear her joy.

I’ve told her of the people who have cheered her, prayed for her, followed her story (some for many years) and who are celebrating with her now. I read every comment, note and email to her. This is what she wants to say to you:

THANK YOU FOR BELIEVING IN ME

I HAVE SO MUCH TO SAY

HOW I LOVE LIFE

I HAVE LOVE FOR YOU ALL

BECAUSE HE LOVED ME

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The Talk

I have never talked to Rhema about her autism. Our family has talked about autism around her, but for so long I incorrectly assumed that we could not have a conversation, that she would not understand.

The fact that we can now have a conversation about almost anything still blows my mind and makes me want to cry and dance for joy. Sometimes I type the words that she’s spelled in caps. That’s not proper netiquette, I know. Capital letters make words louder. And that’s just fine by me. After 12 years of silence, I hear her loud and clear.

Yesterday we went for a drive and things were not in order in her mind. She became upset in the car and lashed out at me. It was not a pretty moment – for either of us.

We arrived home and she went to her chair where we do RPM, and she cried.

I came over after a while and picked up her stencil board.

“Rhema, why are you crying?”

“I AM SAD.”

“Why are you sad right now?”

“I HAVE A(V)UTISM.”

“What about autism makes you sad, baby?”

“I HAS HIGH EXPECTATIONS.”

“Yes, I know that. You’ve told me before that you have high expectations.”

There was a pause as I searched for words. I didn’t know what to say so I just asked her if she had anything else she wanted to say.

“AUTISM MAKES ME SO MAD.”

“I get that, Rhema. It must be so frustrating sometimes.”

“I HAVE HARD TIME DOING LIFE.”

At that point we put the stencil board down so that I would not cry. For a minute I just needed to try to process it all – the joy that she could finally share these things and the heartache over the words themselves.

“Rhema, I have something to tell you.” And then I kind of laughed. “I think you know this but I write a blog and I’ve been sharing with people about what’s happening with you… how you’re communicating now through pointing to letters and typing. Someone who reads the blog wrote me this: ‘Please tell Rhema I’ve been praying about something last night, and in her wisdom, she just gave me the answer today. Tell her thank you!’ So Rhema… I guess what I’m trying to say is… I know autism can be so hard sometimes… and I know I don’t even know because I’m not you. But I believe God has a good purpose for your life and He can use even what you’re going through now.”

“I HAVE AUTISM SO HIS GLORY WOULD BE REVEALED.”

 

I thought about the countless times a scenario likes this has played out where she became overwhelmed or upset, when she put fists to her eyes and wept. And she could never express why.

I thought of the years of seizures and hospital stays and the medications with a host of side effects still today poured into her already dysregulated body. And she could never say how she felt.

I thought of the years of pain – when she would repeatedly bite her hands and arms so badly we’d have to ice them and the school nurse recommended we take her to the hospital for her injuries.

I thought of the years of screaming. The many times I’d walk into her room and find the floor covered with clumps of hair she pulled out. She did not have the ability to say, ‘This life hurts!’ or ‘I am sad’ or ‘I am mad.’

I thought of the years she has been treated like a baby or spoken to like a baby because of her outward behaviors and inability to speak. And disregarded and not included as if she did not have a working mind.

And yet, with her words, she says to me that all of this, all of The Hard, is worth it. If it somehow brings glory to God. Every day it’s worth it.

And if she can say that, then Lord help me, so can I.

I can get off the floor. I can lift my head as the tears fall and say,

“Thank you. Thank you. For your glory, God.”

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On words and song

So much has been happening with Rhema’s communication I don’t even know where to begin. I alternate between wanting to shout from the rooftops every little thing she spells on her stencil board to needing to keep it all close to my heart and sit with it a while.

The lines from a U2 song:

I want to trip inside your head
Spend the day there…
To hear the things you haven’t said
And see what you might see

After nearly twelve years of silence we get to do that. And it is awesome. It truly is like God has opened the floodgates of heaven and poured out a blessing so great we can’t even take it all in.

Friends, family, and some therapists who work with Rhema have said to me, “You always believed.” That’s true, but I only had a little belief… just enough to keep hoping and keep trying.

And I guess all anyone ever needs is just a little faith. A little faith with proper tending will take root and grow into big faith that can move mountains.

She is still Rhema. She still needs support with every part of her day. She still struggles to live in a body that repeatedly betrays her and navigate a world that often overwhelms her. It’s often hard to believe that the girl I see is the same girl who is now able to share her beautiful thoughts. So far I’ve yet to hear a trace of anger or bitterness or discontent in her words. Only thankfulness.

I’m taking notes from both of my girls about genuine faith – what it means to simply believe. Regardless of the past or future or circumstances or what others might think or say.

“So love God my heart sings.”

That’s what she said/spelled after we studied a Bible passage that tells us not to worry…

The flowers of the field do not labor or spin. Yet God clothes them in splendor better than kings. How much more so will He dress you in beauty? What is the price of a sparrow? Pennies, right? And yet the heavenly Father never overlooks a single one. You are worth more than a million sparrows. So do not worry. He knows what you need. (Paraphrase of Matthew 6).

Her response: “So love God my heart sings.”

Is that why you sing, girl? Because of Love?

I want to believe like that and love like that and sing like that. So that it flows off my lips and fills my days and makes me faithful and blesses others and blesses God.

Good confession

I can still remember the moment I knew her name. I was 7 months pregnant, and Brandon was preparing to deploy to Iraq. My friend Shannon and I were chatting after dinner in my kitchen in Germany. I told her I that I was not crazy about the name we had chosen for the baby – it just didn’t seem to fit.

Shannon insisted that I had to be excited about the name. And so we brainstormed long into the night. Shannon was the first to say the name Rhema. And when she said it, I can’t explain it, but it’s like my heart remembered. I knew her. I knew that was her name.

It means “utterance” or “thing said” in Greek. In the Bible, rhema is often translated as the word “word.” At first, Brandon thought it was too sacred a name to put on a child. But my heart was set on it, and we studied the Scriptures for anywhere the Greek word rhema appeared. We chose Romans 10: 8-9 as her “theme” verse: “The word is near you; it is in your mouth and in your heart, that is, the word of faith we are proclaiming: That if you confess with your mouth, “Jesus is LORD”, and believe in your heart that God raised him from the dead, you will be saved.” I recited the verse to her while she was still in my womb. For nearly twelve years now I’ve said it/prayed it over her every night.

Autism, for us, has been about tearing down expectations only to build them up again into a fabric we could not ever have imagined. We named her “word”, and yet she was unable to speak a word. Our “holy” plans flew out the window every Sunday, and still do, as she struggles to make it through a church service and colors on every bulletin, sign-up sheet, welcome card, and hymnal she can find. She’s been known to low crawl under the pews from the back of the church to the front. Her favorite part is the end when she can race to the fellowship hall for a drink or to the car for a fast getaway.

This Holy Week Rhema and I have been studying the events that led to Christ’s ultimate sacrifice on the cross. We read of how “all the poison of sin was going to have to go into Jesus’ own heart… and poured into his heart would be all the sadness and brokenness in people’s hearts. And poured into Jesus’ body would be all the sickness in people’s bodies. It would crush him. (Jesus Storybook Bible).” But he would do it. For love. For us.

I asked her what she thought about this crucifixion and resurrection story. As she spelled out her answer, letter by letter, the tears flowed in amazement and joy. It was the culmination of years of wondering and hoping that she was indeed hearing and understanding words of faith. That it was/is true that even when she cannot fully communicate with us, God speaks her language perfectly.

All my prayers answered in her words tapped on a stencil board:

“I HAVE HIM IN MY HEART.” ~Rhema

The Word is there, has always been there.

On this Good Friday and in light of Rhema’s good confession, I have a renewed interest in asking those of you who read our blog: do you have him in your heart?

Rhema’s prayer

I was flipping through the Jesus Storybook Bible and found a story to read to Rhema about prayer. As usual, it seemed like the message was just for her and just for me straight from the heart of God.

“When you pray, don’t pray like those Extra-Super-Holy-People. They think if they say lots of words, God will hear them. But it’s not because you’re so clever, or good, or so important, that God will listen to you. God listens to you because he loves you.

Did you know that God is always listening to you? Did you know that God can hear the quietest whisper deep inside your heart, even before you’ve started to say it? So you don’t need to use long words or special words. Because God knows exactly what you need even before you ask him.”

We didn’t rush over those thoughts. We chewed every morsel as I wrote the words down and she re-traced them or scribbled over them. We practiced spelling on the letter board.

And then I asked her, “Rhema, what do you pray for? Can you tell me?”

I really don’t have words to describe what happened next. It’s a moment that has changed me and changed our family forever, I am shaking and laughing and crying as I write this. Four words. The first sentence she has ever spelled for me…

And I wondered if anyone would believe me when I told them about Rhema’s prayer. I wondered if I would believe me.

So I grabbed an iPad to record her. I asked her to spell it again, and she did.

This is her prayer.

This is His answer.

“I HAVE MY VOICE.” ~Rhema, age 11

What a friend

“He loved you before all worlds; long ere the day star flung his ray across the darkness, before the wing of angel had flapped the unnavigated ether, before aught of creation had struggled from the womb of nothingness, God, even our God, had set his heart upon all his children…Ye who have tasted of his love and know his grace, will bear me witness, that he has been in uncertain circumstances a certain friend.” ~Charles Spurgeon

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Sometimes you think you’re lacking something. And then you realize what you do have is somehow sweeter and more than you could have imagined.

I was reminded of this when reading a story to Rhema about Zacchaeus, a tax collector by trade in Bible times who stole peoples’ money. It went like this: “There was once a man named Zacchaeus who didn’t have any friends (none). Do you have any friends?…”

Naturally, parents want their children to have rich, meaningful relationships in their lives. It’s taken me years to understand what friendship is/means for Rhema. There are no birthday party invitations or playdates or phone calls or the camaraderie of sports teams and group activities… and that fact used to pain my heart.

But she has friends – her wonderful classmates and teachers at school, Dana and Melissa (her sitters who care for her so much just the way she is), so many people in the online community who cheer her, pray for her and support her from afar. She is enthusiastically loved! What a gift.

I once wrote the following about her classmates: “They give and don’t keep score. G will happily and faithfully say “Hi Rhema!” every day whether she looks at him or not. In my simple way of thinking, friendship involves/includes reciprocation. For a friendship to exist she would need to do something for them; acknowledge them and talk to them and play with them. In my limited perspective, she doesn’t seem to do any of those things. But maybe she does. And even if she doesn’t, they don’t need it from her. And maybe they know each other better than most and get each other in a ‘girl, you don’t have to say a thing’ sort of way. Maybe they share a bond I cannot begin to understand…”

“Do you have any friends, Rhema?”

I held up her RPM letterboard. (Click here for more info on RPM)

She pointed to the letters “Y E S.”

She knows she has friends. Knowing she knows is a shot of relief and joy to my soul.

“What’s the name of your friend?”

“H O P E.”

“Hope” is Rhema’s answer to a lot of questions. (Can you picture my huge smile? Now picture Hope’s – it’s even bigger.) Hope is excited about her sister’s growing abilities to communicate her thoughts through RPM and tickled pink when Rhema spells her name.

We read the rest of the story… how Jesus looked up and saw the un-seen, the outcast – Zacchaeus in a sycamore tree (he was short so he’d climbed up for a better view). How He invited himself to Zacchaeus’ house and shared a meal with him– this man who had no friends. How Jesus knew everything about him and yet he still loved him. In an instant the fellowship of Jesus changed Z’s life and heart forever. He pledged to give half his income to the poor and pay back four times over everyone he has cheated. In the Storybook Bible, Jesus said, “My friend! Today God has rescued you.”

We chewed on that for a while, the fact that the Most High God befriended a man whom everyone despised. Then I said to Rhema. “Can you tell me the name of another friend of yours?”

She spelled, “J E S U S.”

“Yep. He’s an even better friend than me,” said Hope still beaming. “And that’s saying something.”

This is my Father and Friend. He gently, faithfully provides for my needs. He holds my hand wherever I go. Chases me when I bolt. Scoops me up when I flop. Kisses my hurts. Washes me, clothes me, feeds me good things. He understands my heart in the silence. He keeps on speaking, every day He tells the mercy story. He fights for me and cheers for me. When I refuse Him, He stoops down to love me. He is my safe room, surrounding me in unbreakable grace.

It may sound simple-minded to some people. But for me, for Rhema and Hope, it’s our testimony.