Writing – from dreams to reality

Not so long ago Rhema was learning to use a stamp with her name on it

because it was not likely that she would ever learn to write independently.

But Heather, her OT, and all of her teachers have an against-all-odds, inexhaustible supply of belief and hope in my girl.

Last summer they taught her to trace the letters of her name,

and I cried because it was a taste of faith-becoming-sight, and I was so grateful and so amazed and I’ll never forget how hard she worked and how God comforted us with the gift of it.

Rhema’s “R”, traced with no prompt!

Heather told me she had a dream that she came to work one day and Rhema was independently writing her name. In the dream, she is so happy and excited that she calls another teacher over and they record it all on video. “One day,” she said. “It will happen.”

.

A couple weeks ago I observed Rhema at school. Her teacher was working with her on writing letters in boxes beneath her name. Rhema was humming and drawing horizontal lines repeatedly. She needed a lot of physical prompting and guidance. And even then, if she managed to draw a letter it was in the wrong box, out of order.

For some reason, learning to write the name has been an emotional journey and I feel like God has been teaching me something along with Rhema. Maybe it’s because people told us it couldn’t be done, and I went home and buried the dream. Maybe because writing is communicating. If her spoken words are few, perhaps she’ll learn to write her heart?  Maybe because once upon a time I just took it for granted that I’d have children who could write their names, and now we fight and try and work for every little thing and now we want it so much more. I cannot express how deep my hope, my desire is for her to pick up pen and write.

And even with the amazing gains she’s made, watching her that day a couple weeks ago, I couldn’t help but wonder if she was really ready for this. But they must think she’s ready, I thought. Well, this is going to take a looooonngg time.”

But Rhema has always laughed at my time tables.

When I picked her up from school last week, Heather was waiting for me. Beaming, she handed me a piece of paper.

Look what she did, friends. 100% independent! Look! what! she! did!

.

.

This dream does not tarry

“For me writing has always felt like praying…”
~Marilynne Robinson, Gilead

.

A couple weeks ago I blogged about Rhema learning to trace the letter “R”. I wrote about Heather, her OT, believing in her and the dream she had that Rhema would one day write her name independently. I believed with all my heart that that “one day” would come, but I knew it would be in the far-distant future. I settled in for the long haul (-standard procedure where Rhema’s concerned), happy to have a reason to dream again.

 .

So I was totally not ready for a miracle when I picked Rhema up from school.

Jenny, one of her teachers met me at the door.

“I don’t know if you’ve gotten an e-mail yet. But you’re going to receive a video we recorded.” She paused. “Rhema traced her entire name independently today.”

I stared at her, confused, and my heart started pounding.

She must be mistaken. Rhema is still just learning the R, and that took months!

Maybe I heard her wrong.

Or maybe I heard her right.

But, oh, don’t make me hope… because in this moment I want nothing more than this.

She was wiping away tears, and wonder and gratitude filled me up and began leaking from my eyes.

“Come back to the classroom. They’re going to have her do it for you.”

I cried. I did. Right there in front of people. Nose running and everything. 

. 

There’s a song that our old youth choir used to sing based on Habakuk 2:1-4.

“Write the vision, and make it plain upon tables, that he may run that readeth it.”

I’ve always loved the phrase “write the vision”, and even dared to hope that blogging might be something like that. The writing out of faith like a prayer, recording the good, hard lessons, waiting, and then watching Him give what we don’t deserve and do “immeasurably more than all we ask or imagine.” Thank you, Lord.

.

Some may watch the video clip of Rhema tracing her name and think it insignificant. They won’t know the hours and hours it took to get her there, and that some said it couldn’t be done. They won’t know the happy tears her teachers and I shed as we watched her trace with no physical prompts at all. They might not even notice that her pencil grip is still immature and her E needs a lot of work. They won’t realize that we still have a long way to go before she can write (instead of trace) independently, but that she just took one super-sized leap toward that goal.

They won’t understand how my girl wrote the vision, made it plain.

And gave us a little more hope to run on.

.

Writing dreams

I keep this little stamp around as a reminder… 

that anything is possible.

.

At an IEP meeting a year and a half ago, a member of Rhema’s team stated that she would be taught to use a stamp with her name on it.

It sounded great, but at the risk of sounding completely clueless I had to ask,

“What exactly is the purpose of teaching her to stamp?”

Someone explained that Rhema would probably never learn to write so she needed to learn to use a stamp with her name on it instead.

The meeting continued. More goals and strategies were discussed. But I couldn’t tell you what they were. I was still shell-shocked by the words “probably never learn to write.” Brandon and I had been so focused on trying to help Rhema communicate vocally – it had not occurred to us to think about writing. I just assumed that she would learn to do it in her own time just like everything else. I did not know that the possibility had been ruled out behind my back. She won’t be able to write? Really?

At some point I found my voice and brought up the stamp goal again. They assured me that they weren’t giving up on writing. It was just that her pre-writing imitation skills were not progressing as they’d hoped. With a stamp she could learn to label her papers and other items.

It felt like they were giving up to me. She was just five years old then – how could they already know that she wouldn’t write? But what did I know? I went home, licked my wounds, tried to re-adjust my expectations.

Fast forward to this year’s IEP meeting. Rhema is in a new school. Heather, the occupational therapist, presents some testing results and goes over Rhema’s OT goals. One of them is:

Rhema will trace her first name, using age appropriate lettering…

I am surprised. I feel unsteady as all of the emotions from the meeting at Rhema’s old school come back full force. Where did I put that dream? That she would write? I had long since packed it away in my suitcase of “Dreams Deferred” for my girl.

Heather has no way of knowing how much this IEP goal means to me.

There is much discussion over the goal, and a liaison from the school district challenges Heather about it several times. She says that she does not want us to have unrealistic goals on the IEP.

I feel the tension in the room. It seems to me that Heather’s professional reputation is on the line, and I think that she’ll back down or at least agree to adjust the benchmarks, lower the expectations.

But Heather is not intimidated. She calmy and confidently says,

“Rhema can do it.”

I keep my poised face on, but I’m all kinds of crying inside. Ready to bust out in a tearful rendition of ”To dream the impossible dream” from Man of La Mancha.

Because this is it. This is what I’ve been hoping for, praying for. Because all Rhema needs is for people to believe in her and think big for her. (Her mama included.)

.

It’s been six months since that meeting, and Rhema is learning to trace the letter “R”. Today I observed Heather working with Rhema. She started off by prompting Rhema gently at the wrist. By the end of the session, Rhema was tracing the “R” independently!! It was amazing and thrilling to watch.

full prompt

no prompt

Heather told me she had a dream that she came to work one day and Rhema was independently writing her name. In the dream, she is so happy and excited that she calls another teacher over and they record it all on video.

“One day,” she says. “It will happen.”

“Yes. One day,” I say.

I have no doubt.

 .

And I keep a little, “retired” stamp around. To remind myself that anything is possible.

.  

Rhema's "R", traced with no prompt!

 

Thanks for giving me back my dream, Heather.

.

.

Pre-Writing

This past April Rhema had a birthday party. On many of the cards she received, kids from her class had written their names or “Happy Birthday” or some other brief note. As I went through the cards, I felt a growing panic. Rhema can’t write her name. She cannot even imitate a stroke or hold a pencil properly. Oh no. Will she ever learn? Will she ever learn to read and write?? I had forgotten to worry about this.

These are the kind of thoughts in which a friend of mine raises her hand (as in a Diana Ross & the Supremes Stop-in-the-Name-of-Love gesture) and quips, “Not helpful.” In other words, “Don’t dwell on the future in which you have no control. Just trust God, girl!”

Still learning that this is not a race, and I don’t have to play “catch-up.” That I can be truly thankful and cherish every little, precious step forward.

Rhema “scribbles.” Sometimes as she scribbles, I hear her mimicking, “DawALine, DawALine.” She has heard the phrase “Draw a Line” from her OT so many times that she associates it with any sort of coloring – she could be making circles or squigglies or zig-zags. It’s all “DawALine.”

Last week Rhema’s school sent me the laminated picture above. The back of the picture is labeled,

Pre-Writing. 11/08.

It made me feel all weepy.

It’s a tiny step, but she’s on her way, y’all.

How do I begin to thank the wonderful individuals who work with my little one day in and day out? They teach her, and take care of her, and guide her with loving patience. I am indebted for life. If anyone has figured out how to thank these angels, please let me know.

The way B (Rhema’s teacher) is holding her arm up in the picture reminds me of an Old Testament story in which the people of Israel were in a fierce battle. Moses watched the battle from a hilltop, and whenever his arms were raised, the Israelites were winning. Whenever he lowered his arms, the Amalekites prevailed. The passage says, “When Moses’ hands grew tired… Aaron and Hur held his hands up–one on one side, one on the other–so that his hands remained steady till sunset.” (Ex 17:12) And the Israelites won the battle.

Thank you to all of the Aaron’s and Hur’s in our life for “holding up our arms”. You are the teachers, therapists, family and friends who continue to come alongside and hold up our arms when we get tired and discouraged in the midst of the battle. With the blessing of your love, your prayers, your encouragement, your commitment to our family…

we have already won.

Thank you, B.