Grumble

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Rhema enjoying the rain 3 summers ago

Rhema and I have been reading Exodus again. We’re at the part where the Israelites are hungry and thirsty in the desert. They’ve crashed from the high of God’s miraculous rescue when He parted the Red Sea and they walked across on dry land. Now they have gone without water and food for days and they are grumbling at Moses and Aaron: Why didn’t God let us die in the comfort of Egypt where we had lamb stew and all the bread we could eat? You’ve brought us in the wilderness to starve us to death!

“You’ve heard me grumble about plenty, I’m sure. Do you ever grumble about anything, Rhema?” I ask.

“My autism”

Moses told Israel that God had heard their complaints and that they weren’t actually grumbling against him.

But against God.

I am reminded of another story, one that Charles Spurgeon told:

“Get into the state of that poor man who was so greatly blessed to pious Tauler. He wished the man a good day. The man replied, “Sir, I never had a bad day.” “Oh, but I wish you good weather.” Said he, “Sir, it is always good weather. If it rains or if it shines, it is such weather as God pleases and what pleases God pleases me.”

My God, we are dry and need to drink sweet water again. Won’t you rain down some mercy and peace on our children, our families, our country?

You provide. You hear our moaning and you still provide. May we hunger and thirst for You.

I think maybe this is our thanksgiving lesson.

Rhema’s reflections on Exodus 15 and 16:

“My grumbling about my autism is against God

But he really made me so lovely

My story is to bring him glory”

Speech to teachers

Not so much students need to have so much repetition. We choose to make decisions on how to teach students by strong belief in their potential. Notice only that they really want to succeed like everyone else.

Teachers should really try to show their students that they are happy to teach them really strong subjects.

I hope the teachers try to help their students feel like they might succeed. How else can they succeed?

If they do not have strong attention spans they will need to have someone help them stay on task. I hate to need this, but I do so much love to learn so I am thankful to go to school.

I love science and I hope to be a scientist one day. How I love science because it shows God’s glory in nature and in us.

Nothing helps me more than having people who try to believe in me. If they do not, I will know it, and I will fail. That is why I am thankful for Soma* and my mother. 32500 people heard my words because my mother did not give up.

Another thing that does not help is when someone does the same thing over and over again. It makes me so mad I cannot try to do better and I very much hate that I do not have better subjects. I mean science, math, history, reading good stories in school.

I think that teachers should try to make students meaningful work so that they have something interesting to study. Nothing makes me so frustrated as having the same thing taught over and over.

I had a good teacher who taught me to spell on a letterboard. She believed in me when no one else did. She taught me to believe in myself when I had given up hope. Her name is Soma and I will always be grateful to her for helping me. Time will tell how much she changed my life. Thank God for Soma.

My strong desire is to have a challenging education. I want to be a scientist. Not something I would have thought so much possible years ago but now I think it is possible. Strong minds should have strong educations. Not strong minds should have strong educations too. Good education is a goal for me.

It is so hard to see things on the ipad and keyboard. It hurts to look at the letters because I have strong eyes. My eyes see too much. It means I can see everything that makes up the letters like the minute details like the parts of the matter that make up the letters. Only I know how hard this is. I try to overcome the pain so I can spell. I think it helps to have different colors that are softer on the eyes. I have so much trouble with my motor skills. They make it hard to be still. To not have total control over your body is the worst obstacle ever. God is helping me get better at this. Nothing makes me happier than this to share my story.

Thank you for inviting me to your class. Only try to be patient with your students. They need your support so much. They will do well to study important things.

-Rhema

Updating the blog – Rhema had the opportunity to visit a college class of prospective teachers and share this speech. I, Jeneil, read her words. It was an incredible learning experience and we are grateful to Jess and the Professor H for inviting us!

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Rhema and Jess, October 2016

Dear readers

Dear readers

So much I want to say
I have my really good voice now
In other words I have the gift of speaking through pointing

I love sharing my words because in them I find my joy

My story of how I found my voice is so amazing

I had prayed to God to help me and He helped me just when I needed
It is so wonderful to have my story told really nothing makes me happier

My hope is that others with autism like me will find their so good way too
in other words I hope they will find their voice too

Something I want to say is nothing happens to happen
My hope is in the Lord He is my reason for everything
My so good voice is because my mother never gave up
She made me hope it was possible She gave me something to strive for
I will always be grateful to her

Really other people should try RPM
it has opened my world
God gave me such a mind that I can remember letters and numbers in my helper head
They are my really good way of relating to the mind of Christ

I love my really good sister Hope
She is my best friend because shes so much my hope for tomorrow

I love my dad too
He is so strong for my family
I have the best family in the world
It is so good to tell them that after so many years of silence

If I could tell parents and teachers one thing it would be to not give up on their kids
God will help you
325000 people will hear my words because my mother did not give up

Thank you for listening

Love Rhema

 

*This letter by Rhema was posted on Diary of a Mom (https://www.facebook.com/adiaryofamom/) in September 2016.

The story I’ll tell… and tell and tell

2015 - Photo taken by Kerrie James

2015 – Photo taken by Kerrie James

I expect that soon Rhema will take over this blog and you will see less of my words and more of hers. And I couldn’t be happier about that!

I do want to share here a bit of her story from my perspective. A couple weeks ago I had the opportunity to speak at my Bible study about Rhema’s amazing journey:

*

I am so happy to share a story with you today.

God has entrusted me with two sweet girls and one generous husband. Rhema is age 12 and Hope is 9.

Rhema’s name literally means “word” or “thing said”. Before she was born we chose Romans 10:8,9 as her theme verse, and I’ve recited that Scripture to her every night at bedtime for the past 12 years. “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 that Jesus is Lord and believe in your heart that God raised him from the dead you will be saved.”

At age two Rhema was diagnosed with autism, apraxia and a rare and stubborn seizure disorder. These things robbed her of her speech. A neurologist also informed us that she most likely suffered from aphasia which is an inability to comprehend language, also known as “word deafness.”

I thought it was all a cruel cosmic joke. My child named “word” could not speak or understand a word.

For years we struggled under the weight of Rhema’s diagnoses, challenges and needs. Brandon was in the Army and was away a lot – he was deployed to Iraq three times, with each deployment lasting a year or longer. Caring for our girls fell heavy on my shoulders. And I think I put on a good face, but inside I felt isolated and alone and angry and bitter and heartbroken. Even though I could not see what God was doing I had to make a choice to believe that He was and is faithful.

My daughter’s struggles did not go away – even now she can still have very hard days with overwhelming senses, self-injuring behavior, aggression and seizures. But God was doing a healing work in our family, and in many ways, it had nothing to do with autism.

I had such a longing to have a real conversation with my daughter and for her to be able to  share her thoughts about… anything – her favorite color, why she was upset, or if she hurt, or what she liked. At age 11, standardized tests indicated she had the receptive and expressive language of a 12-month old. But there were little signs that caused me to believe that she understood far more than we thought. We began telling her that we would never give up on helping her communicate better, that one day she would be the storyteller.

In 2015 we took her to WI and TX to learn a teaching method called RPM, Rapid Prompting Method. It involves teaching a student to point to the letters to spell words and sentences on a simple stencil board or letter board. It was a total paradigm shift for us because it meant teaching age appropriate material to Rhema as if she really understood everything. For her, pointing was a challenge because she lacked the motor planning to form her hand into a point. But we came home, and I was determined to keep teaching her using this method.

First, we studied the book of Exodus. Because Rhema, like Moses, needed to find her voice. In the beginning I would read from Exodus and then ask her a question about it, writing down 2 choices and spelling the choices out loud. “Did Pharoah want to kill all the Hebrew boys – B-O-Y-S or girls G-I-R-L-S?” And then I would encourage her to point to a choice.

There was something sweet about studying the Bible that way, letter by deliberate letter we were believing more and more. It was like God was spelling it out for us, inscribing it on our hearts. One night we read Exodus 4 and I sensed that Rhema could really identify with Moses. “O Lord, I have never been eloquent… I am slow of speech and tongue.” The LORD said to Moses, “Who gave man his mouth? Is it not I, the LORD? Now go; I will help you speak and will teach you what to say.” ~Exodus 4:10-12

After our study time I wrote the following:

“I have indeed seen their misery… and I have heard their cry. I know their sorrows.”

We’ve been reading the book of Exodus. Rhema and I. I write that casually, as if it is nothing new. But we sit and I read to her and ask her questions about it, and I believe that she is listening and understanding. Well, that’s never happened here before, and it’s remarkable.

I write out the words God spoke to Moses through the burning bush: I have seen, I have heard, I know.

He tells Moses that He has come down to rescue the people of Israel. He is sending Moses to deliver them from their slavery and oppression. Moses protests, saying, ‘Who am I that I should do this?’ No doubt he is thinking of his inadequacies, his unworthiness, his past failures and fears, his “slow tongue.”

God says, But I will be with you.

I ask her about it, writing out different choices on paper. What did God say to Moses’ objections?

She waits. She lifts her hand and slowly, purposefully points. That beautiful, hard-won point. Her finger presses the words, But I will be with you.

“He will, Rhema,” I whisper. “Always. He will.”

When I cannot, He will.

And if she remembers in the moments when she feels so alone, little girl standing at the window, always on the outside looking in, that she is indeed seen…

And if she believes that when she can’t speak, that she is heard…

And if she trusts that when no one understands her quiet sorrows, that she is known…

by the God who wonderfully made her and whose love for her is indescribably extravagant, measureless, endless…

that is enough, more than enough.

No matter what life brings if she will touch those words, cling to them, hold them close to her heart,

‘But I will be with you’

Then this mama’s heart rests and rejoices.

She has all she’ll ever need.

After a full year of studying together every night, she spelled her first sentence of open communication with me. We’d been doing a lesson on the Lord’s Prayer, and I asked her if she could tell me what she prayed for. I held up the stencil board and she spelled “I H-A-V-E M-Y V-O-I-C-E.” I asked her again because I couldn’t believe it, and she spelled it again. She was telling me that she prayed to have her voice.

It was the most incredible moment of my life because I knew that God had done it. Rhema word. And the moment she spelled that she prayed to have her voice, she had her voice. God answered her prayer then and there.

So that was March 16th of this year. Every day since has been like a dream as she tells us – through pointing – remarkable things. We are getting to know her in new ways for the first time. God is indeed with her mouth and He has given her a beautiful voice. Like Zechariah whose tongue was loosed, she is full of praise and thanksgiving to Him.

This is the kid who makes noise in church, colors with markers in the hymnals, runs laps around the sanctuary and has been known to do the low crawl under the pews from the back of the church to the front. Her favorite part of church is the end where she can race to the fellowship area and drink all the lemonade. To this day she struggles to make it through a church service or Bible study, and yet she has a faith story as God has cultivated a real and genuine relationship with her.

For the children and grandchildren in your lives – speak the God’s Word over them, read it into their ears. It might not seem like they’re listening or they understand or even care. But God speaks their language perfectly, and His love translates.

“Nothing happens to happen

My hope is in the Lord

I have high hopes that I will speak someday

but if not I will speak in my heart

I will say I love the Lord

He gave his life for me so that I might live

He has given me my hearts desire

He is so good to me

He is so much love

I am His”

-Rhema

Once upon a time I would have given anything, really anything, just to hear her thoughts. Now I have pages upon pages of words she had spelled and I have written down – in notebooks and journals, on desks and the floor by my bed, on the ironing board… and of course Facebook.🙂 Her words fill the rooms of our home and our hearts.

In all the silent years, it seemed like God was silent. But all along He was, and is, speaking.

And now I am the speechless one. There are no words to describe my amazement and joy, my gratitude to Him. Our God is a God with perfect plans. He sees and hears and knows us. He comes down to deliver us. He teaches us what to say. He performs wonders in our midst. And He is with us.

Scientist

We’ve been slow to update the blog, but there’s lots going on and many new things have been happening for Rhema.

This week I posted the Rhemashope Facebook page:

Rhema is participating in a science “club”. The lesson will be at age/grade level and she will join kids her own age. We’ve been waiting to be a part of this for months. Will you pray for us that it goes well?

I wanted to share the letters we wrote to the club a couple weeks ago:

Dear [Club],
I have so much I want to tell you
My hope is to be a scientist
My true strong desire is to be a scientist
I really want to say that I love science because so much of God’s glory is in nature and in us
Nothing makes me more happy to than to study science
My hope is to come to your club and see you soon
I so want to speak with you my heart could burst but I will wait until Wednesday
I hope my body will cooperate so I can stay in class
Thank you for having me
Rhema

Dear [Club],
Thank you for inviting us to your club! I wanted to tell you a little about Rhema. She is your age, and she has autism. She does not speak with her mouth. She is able to communicate her thoughts by pointing to letters on a board and spelling words and sentences. She is also learning to type. Sometimes it takes a long time, but she is so happy to communicate in this way after twelve years of silence.

Autism makes it hard for Rhema to control her body and manage many things that come easy for most of us. She is very sensitive to sounds so she will be wearing noise cancelling headphones when she comes to visit. She will probably color with markers and may hum softly – these things are calming to her when the world often feels overwhelming. But don’t worry she will be listening very closely to the lesson! She is also shy and may cover her face… and she may be too excited and need to leave early, but I want you to know that coming to your club and learning science together is truly a dream come true for her!
Thank you all,
Rhema’s mom

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And the next day there was this:

Before we went to the Science Club, Rhema was really struggling. She’d been up all night, and her senses were very much ‘out of order’ (her words).

As she tried to communicate her thoughts she intermittently bit her hand and fingers, rocked, and hit herself. It worried me to see her struggling so. She said:

“I may need to leave early
because my motor skills are bothering me
I hope my body will cooperate
but if not I will praise the Lord
He is so good to me
He made my body
so I will trust Him”

She humbles me.

We went to the Science Club. As some pointed out, just getting there was an accomplishment. Rhema sat between Brandon and me; she colored, tore paper, hummed, walked around, listened and learned. The students and the teacher were such gracious hosts. *She made it through the entire thing!* It was not easy for her, but she did it. Towards the end I asked her if she wanted to say anything, and she spelled two simple words on her board:
THANK YOU

#thankyou

 

I had such a good time in science today

I will never forget it

It was a dream come true

Thank you so much for having me

So much to say about how I learned about science today

I loved hearing about the domains in the book and seeing the groups on the board

It was so interesting to hear about nothing I had heard before

I loved learning about nothing I had heard before

Tomorrow is full of possibilities now that I have been to science class

I must thank the Lord for my mother arranging this for me

Chosen my path in life

I want to be a scientist

-Rhema

 

Arithmetic

“So Rhema, let’s review. There are certain principles or rules in math that are known as properties. What did we learn about these properties? They are…?”

“ALWAYS TRUE”

“Yes. Do you remember the name of one of the properties?”

“COMMUTATIVE”

“You’re right. That’s the one that says no matter the order of the addends the sum is always the same. What’s another addition property?”

“ASSOCIATIVE”

“Yes. That’s the grouping one that says (a+b)+c = a+(b+c). Right? As you said, these properties are always true. Can you think of anything else that is always true?”

“I LOVE YOU”

Her colors

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She does not draw figures or objects. Only lines and spirals and color – lots of color. She calms when the page is filled. Her fingers, face and pants are often stained with her colors. Her papers are everywhere in our house. I wonder if they represent how she feels inside – busy, swirling, full. I don’t know. But I think it’s beautiful.
-Rhema’s mom, December 2015

I love watching her create these masterpieces. They’re not random. Multiple colors in her hand at once sometimes, yet intentional strokes with each color at “their” time. I particularly like when they are accompanied with a song. It’s pretty perfect.
-Chelsea, Rhema’s former teacher

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i love to remember when i was young and could color all the time

so much i want to say about how i love to color

every time i try to say what it means i get tongue tied

so much joy comes when i start to think about how coloring makes me feel

it is something i cant explain

i love reds and greens and blues and browns

i love the way the tones run together

it soothes me so much that i cant stop inventing new ways to color

my favorite thing to draw is swirls like vincent van gogh starry night

my points are smartly drawn and every line has purpose

i try not to steal markers but i cant stop sometimes it is too comfortng

when i color the world is my friend

so thankful to God for colors

-rhema