Hot Pink Butterfly (An RPM Update)

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I want to tell you about our progress with RPM (Rapid Prompting Method). It’s been 8 months since Rhema had her first RPM session. We’ve traveled to Wisconsin and Texas and worked with the experts. Last summer we attended one of Soma’s RPM camps, and we were changed forever when Rhema demonstrated her intelligence, thoughtfulness and sense of humor by spelling words on a stencil board.

Since then she and I have worked nearly every day together to learn how to improve her communication through this method. For more info on RPM, click here. Our friend and beloved therapist Terre volunteers her Saturday mornings to work with Rhema.

We’ve had many setbacks and frustrations. Days of tears and epic fails. We’ve also had moments of remarkable success. I’ve tried not to fret about our pace or compare our rate of progress to others. Every time we hit a snag I read, study videos, and pray for insight… a lot.

At this point we are practicing spelling words or short phrases on a letter board and doing some math (addition, subtraction). She is growing more confident about answering open ended questions at the end of each lesson (more about that later).

I used to shy away from “teaching” her academic topics because of my own insecurities. RPM has given me the opportunity to share in learning with Rhema and opened my eyes to how capable she really is. Now we talk about subjects I never dreamed we would. She does not speak words, she does not give eye contact, and often she doesn’t appear to be listening at all. But no doubt we are conversing.

In the past, I would not always tell her about things that were happening – a doctor appointment, trip or change in routine. I’d think, Why bother? Now I build an RPM lesson around an upcoming event. As a result she’s handled situations so much better simply because I told her about them and helped her understand what to expect. Another mom called it dignity. My girl has dignity now – I see it in her eyes. And I could cry thinking that we’ve been (unintentionally) withholding it from her for years.

Every day I wake up hopeful and excited. I honestly can’t wait until the evening when we do our lessons. I can’t wait to discuss the different shapes of butterfly eggs or the pattern on a woodpecker’s wings or the layers of the forest habitat or Joseph’s coat of many colors.

One night after a series of lessons on the butterfly lifecycle, I asked her about her favorite color of butterfly. She independently spelled HOT PIENK.

Yes.

HOT PIENK!!

Now I keep a picture of a pink butterfly on my phone and bring it up when I need a lift… on the train to work, during a meeting, in the middle of the night, every day.

Around Christmas time we studied the birth of Christ and I asked her if she remembered what “Immanuel” means.

She spelled, GOD WITH US

Yes He is, dear one.

Weeks ago I shared with her how God made a way for His people in the book of Exodus and how time and time again He’s done the same for me. I asked her what she thought about “God making a way”, and she spelled RHEMA.

(She gets it. She gets it.)

I finally get to talk with my girl.

And hear from her, too (it’s slow and painstaking and sometimes just a single spelled word). It’s been so long coming, almost 12 years. My heart is pounding with hope and joy.

We’re waiting for more. But even if the “more” doesn’t come, if we stay right here – where we are now, it’s all been a gift anyway, a sweet gift words can’t begin to convey.

Still Singing

“My life flows on in endless song
Above earth’s lamentations
I catch the sweet though far-off hymn
That hails a new creation.
 
No storm can shake my inmost calm
While to that rock I’m clinging
Since Love is Lord of heaven and earth
How can I keep from singing?”
~Robert Wadsworth Lowry
Last week Rhema had minor surgery.

We did an RPM lesson about going to the hospital the night before, but I had no idea how it was going to go. In my mind I rehearsed different strategies for all of the scenarios and struggles we might face.

The day of surgery we made it through the hospital doors at 5:45 AM and up to the 3rd floor with no major problems. We breathed a huge sigh of relief, and Rhema stood quietly beside me as we checked in. She was surprisingly calm and waited very well. The woman at the desk stood to escort us into a pediatric waiting area.

That’s when Rhema did what I think everyone in the pre-op area felt like doing: she took off running.

If I hadn’t been concerned about catching her I would have been beaming with pride at her track star speed. I ran after her, leaving the bewildered woman behind. She stopped in a hallway and covered her face. I told her we needed to go back, that we had to stay at the hospital for a while. She wasn’t budging. I could not physically move her back to the waiting room, and I could not leave her alone to go get help. Anxiety began swirling in my stomach. We were stuck.

Then I saw it.

A wheelchair.

As if placed by divine intervention, there was an abandoned wheelchair just a few skips away from us.

“Rhema, want to ride in the wheelchair?”

As if to say “Of course”, she uncovered her face, walked over and sat in the wheelchair.

I wheeled her back to the waiting area, and she contentedly rocked forward and back in the chair all the way.

The next challenge was her coat. Her coat has a big hood that she always pulls over her head as if to shield herself from the sensory onslaughts of the world. It’s like a security blanket for her, zipped up to her nose.

She had to take it off for her medical procedure, and I expected a battle. I worried over it for quite some time, debating whether I should even put her coat on at all that morning.

After the nurse had done everything she could do with Rhema’s coat on, I gently told her I was going to help her take it off. She resisted for a moment and then let me unzip her coat and slide it off. I was amazed. I quickly put her hospital gown on. She reached for her coat and tried to put it on over her gown. We had a little tug of war, but she finally let me put her coat away. Wow.

Thanks for prayers for peace, friends!

“Fret not thyself…” (Ps. 37:1) Sometimes I feel like there’s sooo much to worry about when it comes to managing situations (current and future!) with my girl. Often I pray, “Lord, I have no idea what we’re going to do about…” And then an unexpected, amazing successful moment comes and wraps me up in a comforting serenade. And the thing I thought would be huge and hard just isn’t.

I’m so thankful for that.

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We had to wait 2 hours before going into the OR. It was hard to wait, and she was not interested in coloring or playing on her iPad. Nurses, doctors and a Childlife specialist came to talk with us. Rhema sat in her wheelchair and sang her sweet wordless song all the while.

Her language, her life is a song. Like a long musical, she intones her heart-thoughts; she sings every emotion. It seems to be a melody for her, for us, for the morning and night, for paper and rain and air and macaroni and blades of grass; she hums to the world.

When we went into the OR, I held her in my lap as the anesthesia team put a mask on her face. My girl put up a good fight. Even after the mask was placed and she began to fall asleep, her soft, soprano hums filled the room.

“That’s amazing,” one of the nurses said, smiling and shaking her head.

“She’s still singing.”

*

I recorded Rhema singing in the car a couple years ago. You may need to turn up the volume to hear it.

Particular

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She’s so particular. Everything she sees, the way she sees it. Everything she does, the way she does it.

She sits in the living room in her chair. Her fork – the only one she’ll use – is placed on one side and a paper plate of dry Cheerios on the other.

Popsicle and iPad in hand,

her blue blanket is draped across her shoulders.

Her backpack at her feet serves as a trusty foot rest,

Her TV nursery rhymes play on repeat.

Me, sitting beside her, my arms tucked around her waist, her pinky locked with my thumb.

This, every detail of this, is how she relaxes.

A bath is not a bath until she’s squeezed half the bottle of liquid soap onto her belly as if getting an ultrasound.

The toothpaste cap must be in the right spot on the counter before teeth brushing can commence.

Lights should be off in the kitchen *while* cooking.

In the morning at the therapy center, a certain chair must be sat upon before she can proceed with her day.

She meticulously constructs and follows many more patterns each day, taking comfort in her routines. If the circle is broken or things re-arranged, I believe she feels the disorder deep inside as seeks to restore the one missing piece. I’m amazed by her mind, how she navigates the world, how she misses nothing.

The study of Rhema is always a page-turner.

As I try to keep up with the myriad fine points of all that is my girl, God tells me of His love for her, for us so detailed, so particular.

How He knit her in my womb, made her bottomless brown eyes, dotted her lip and painted her skin like a mocha frappe. How He gave her a song as sweet as angels.

Before I formed you, I knew you. Before you were born I had holy plans for you. You are perfectly, marvelously meant to be.

How He keeps every tear in a bottle, each ache is written in His book. He tracks every detail and counts the hairs on her head. He watches over her comings and goings. Whether she goes down to the depths or rises on the wings of the dawn, He is already there.

How Love, measureless, incomparable Love came down in human form, in poverty, as a baby in a dirty stable. All for her. All for us. To be with us. To rescue us. To give His life as a ransom for mine/ours so that we can live forever free.

He’s so particular.

“What a mystery
That You notice me
And in a crowd on ten thousand
You don’t miss a thing.”
~Bethel Music

Sunday leaves

We were doing well. Rhema and Hope were sandwiched between Brandon and me in the pew. Rhema colored happily, feverishly on the church bulletin as the congregation sang.

And then during the prayer time, Hope coughed.

I knew what was happening, but my hands – trying to hold one and protect the other – did not move fast enough. Rhema, overwhelmed, let out a strangled scream and lashed out. Brandon gasped and we scrambled to contain the situation but couldn’t help causing a little scene in the back of the church. Rhema’s marker cap rolled a couple rows forward under the pew and she frantically lunged for it, bumping a gentleman in front of us. Once she had her cap, she and I quickly exited the sanctuary. I saw Hope as we left, huddled next to Brandon with tears streaming down her face. Her hair had been pulled pretty hard. I saw the shock and sadness in her eyes, all too familiar now, and oh it hurt me to see her like that.

We went to a classroom upstairs and Rhema calmed. I tried talking to her about what had happened. Then we came down with more markers and paper and settled at a table outside the sanctuary doors. We would be fine, I thought, as long as we didn’t go back inside the sanctuary. I tried to listen to the sermon. But I was still reeling. The aggression and self-injury that sometimes accompanies our flavor of autism can be absolutely crushing.

My heart broke for Hope and Rhema. And honestly my heart broke for me. I sat there feeling sorry for myself and for the cup we’d been given.

During the service people were encouraged to write something they were thankful for on a paper leaf and bring it to the front. The sanctuary doors were opened and I saw Hope as she stood in line to pin her ‘thanksgiving leaf’ on a board up front. She saw us and waved and gave me a beautiful, peaceful smile, and my eyes filled. Love without condition. There was no doubt in my mind what she’d written on her leaf and who was at the top of her list.

(I found my phone later and Brandon sent a picture of Hope’s leaf).

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I looked at Rhema, her head down and hood up, humming softly and delighting in the swirling colors on her paper. Thanksgiving, true and deep thanksgiving flooded my soul.

One of the church elders approached us. “Would you like to do a leaf? I can take it in for you or I can stay with her while you take it in.”

I hadn’t planned on writing a leaf (probably because I’m stubborn). But I took him up on the offer. Without hesitation I wrote down one word and handed it to him.

Autism.

It’s not daisies and unicorns here. Eleven years and counting, autism has taken far more than it has given to my darling girl. She struggles daily to live in a body that does not cooperate, and I dream of a time when she can tell me something, anything of what it’s like to be her. Some days all we know is helplessness, heartache and frustration.

I am more inclined to find reasons to be thankful in the midst of a hard thing. But to me, giving thanks for a hard thing was thankfulness on a whole ‘nother level.

But in that moment I was grateful for the limp of ‘disability’ that forces us to lean on Him. For weakness so that we draw from the source of real strength. For God’s glory in struggle and eyes that see Him now in high definition color in the pain and the gifts and the triumph. For precious people in our lives who walk with us, cheer and uphold us. For knowing Gospel love every day that bears all things, believes all things, hopes all things, endures all things.

Autism.

On a little paper leaf.

A joyful offering of gratitude with all my heart, broken pieces and all, to the Giver of all good things.

Team

The alarm clock says “Go!” and I’m running and rushing. And my big girl, my tween, still needs help with her every part of her day.

The “fight” is part of the routine. I clap loud and sing (annoyingly) “It’s Time to Rise and Shine… and give God the glory-glory.” Then we engage in a tug-of-war with her blanket, and she wins. Later I help her in the washroom, I help her clean and brush her teeth and get dressed. For us, it is work. And all of it involves some fight.

There will be countless moments this like in a day, month, year, even lifetime. This morning I remember it’s something that just we share, this taking care, this striving and fighting just to do the day.

We’ve shared it since the beginning.

I can still see her, newly born, spiky black hair and big grey eyes. I’d laid her in my hospital bed after everyone had gone home. Her father was away fighting in the war. “It’s you and me, girl. Just you and me.”

She’s eleven now and wants to do more, but her body doesn’t always work the way it should. So the glass shatters and the apple juice spills on the table, her plate of wild rice-ketchup-and mayo concoction goes flying across the room. On hands and knees I clean. She efficiently wipes ketchup on the one pair of acceptable pants and in her clean hair.

She leans on me with every step, we body-walk into the world.

Sometimes it seems she needs help with so many, many things.

Sometimes I feel helpless to help her.

But I trust that she is helped.

Tonight I plop down on the couch next to her. Quietly, unexpectedly she gets my glasses and pushes them, upside down, onto my face. My shirt is somehow hiked up over my belly – I mean, my six-pack abs – and I’m too tired to care. She reaches out and gently pulls down my shirt. She does it with the sense of order that she does most everything.

But her tenderness goes into my heart. Without a sound she communicates, I got you, Mommy.

Joy invigorates, and I laugh. That I would be so perfectly cared for by the one I care for.

It’s one of those rare, precious moments that a word is not just in her heart and head, but in her mouth, spontaneous and clear. I already know the answer.

“Rhema, do you love me?”

“Yeah.”

The Lord is my strength and my shield; in Him my heart trusts, and I am helped. ~Psalm 28:7

Going with us

A routine doctor’s appointment for Rhema these days is anything but. She experiences so much anxiety about hospitals and medical offices that I’ve had trouble just getting her into the building, and we’ve had to cancel appointments. Earlier this year a doctor met with me in the parking lot because Rhema became so overwhelmed. Recently that same doctor conducted an appointment at Rhema’s school – a place where she feels comfortable, safe and supported. I am still amazed and grateful that this doctor was willing to think outside the box and do whatever was necessary to help my girl be ok.

But my gratitude doesn’t stop there. Every day for months Rhema’s teachers and our school nurse have been taking her into a medical office at school. They work on taking off shoes and standing on the scale and getting height and vitals and sitting on the examination table. These things have always been hard for Rhema to manage, lately they’ve been pretty much impossible. Even when she had her appointment at school her heart was pounding out of her chest she was so nervous. But they practice at school every day.

Today she has an appointment with a new doctor at a new facility. New = unfamiliar = anxiety. Every aspect of it will be hard – getting through the doors, sitting in the waiting room (a coughing child could trigger an upset), walking into the examination room, the waiting, staying in the examination room, the appointment itself… she’s scheduled to receive 2 injections.

I don’t know how it’s going to go.

But… but. She’s been practicing.

And at the very least she knows that she’s not alone.

Two of her teachers are going with us. To help her. To help me.

Not enough can be said for how wonderfully and completely people have come alongside us and supported and loved my sweet girl. They go with us, all in, on this journey.

All I can say is thank you again and again to every one of you. You know who you are. And I hope you know how Rhema loves you, how you inspire her.

(Video is an RPM session Rhema and I did last night. The video quality is not so great, but we are talking about going to the doctor. The fact that she is answering questions by spelling answers is an incredible accomplishment, something I could not have imagined a year ago).

Way

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Rhema in 2012 after she wrote her name.

We’ve been practicing RPM and studying Moses in the book of Exodus for months now.

A couple weeks ago I posted this on Rhemashope Facebook page:

We’re at the point where the people have escaped Egypt, they are at the edge of the desert and they don’t know the way… they don’t know how to go on. But again there’s the promise from God to Moses and to the people: I am with you.

Rhema practiced spelling the word PROMISE.

So I wrote God’s promise on paper, and she spelled it on the letterboard:
I AM WITH YOU.

Letter by deliberate letter, we believe more and more. He’s spelling it out for us, inscribing it on our hearts.

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Last night we read how the Israelites were trapped at the edge of the wilderness, with mountains on one side, the Sea in front of them, and Pharoah and his army with 600 chariots closing in on them. God caused strong winds to blow that parted the Red Sea and the people walked across on dry land to safety. Our Storybook Bible described it like this: When there had been no way, God made a way.

It’s good to remember the presence and faithfulness of God in seasons past… when we did not know the way. A friend once wrote: “Remember God. Remember him well. Remember where you’ve come from, where you’ve been, and where you’re headed. Remember how he’s been there each and every time. He’s in it all—past, present, and future, and his faithfulness never ends.”

I said to Rhema, “After Daddy and I got married we wanted to have a baby. But for some reason it was hard for me to get pregnant. I wondered if it would ever happen. And then one day after years of trying I found out that there was a precious life growing inside me. I was so happy. It was you! God made a way.

And then Daddy had go away to war for a year just before you were born… we were stationed in Germany and I wondered how we’d do it. But God showed us the way.

And I’ll never forget the time we needed to get you into a special school as soon as possible. The school had a five year waiting list. You got in in three months! God made a way for us.”

(I find myself telling her things I’ve never told her before. Or, perhaps I did tell her in the past, but our conversations are different now. I now know they are not one-sided. It’s awesome (so awesome!) to really be able to talk with my girl and believe she understands.)

Then I asked her something. And I don’t know if I was messing things up by asking such an open ended question at this stage, but there was no turning back. I held up the stencil board. “So… what do think about when you think of God making a way? Just one word is fine.”

I don’t think it was coincidence, the word she spelled. We’d practiced it once or twice several weeks before, but she had not attempted it since.

She spelled R H E M A.

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July 2012