In her own words

Last night Rhema shared her story with an audience of 300 people, primarily college students. She spent days typing her message. She used the text-to-speech app on her iPad. Last night she pressed the “Speak” button and the app spoke her words and were broadcast on a screen. It was such a special moment.

Here is her story in her own words:

My name is Rhema and I have autism.

One year ago I found my voice through pointing on my board. It was my only way to share the story of how God saved me and I am so happy to tell it to the world.

When I was younger I could not speak with my mouth but I understood everything. It was so frustrating to not be able to tell anyone how I felt. So I often hurt myself and did destructive things. It was a very painful time in my life. No one could help me so I was full of despair.

I prayed for help and one day God told me He someday would give me a voice so much bigger than anything I could imagine. Soon after that I was praying and thanking God for His promise to me.

One day my mother took me to Wisconsin to learn RPM and I knew this would be the way I would have my voice. My mother spent many months with me working until I could spell on my board.

Today I am able to say Jesus is my Savior and He is my hope. So much of my words really come from Him. He is my strength in my so weak self. And I boast in my really weak self so His power shines through.

This is my story.

-Rhema

rhema-at-conf

What we see, what she learned

This week Rhema attended a science class at her beloved friend S’s school.

She stayed in her coat with the hood pulled up and her headphones on. She colored vigorously on paper, and she never looked up while Miss O, the teacher, or other students were speaking. A few times she got up to throw balled up paper in the trash or walk to the front of the class to get to Miss O’s desks and find new markers.

To many it would appear that she was completely out of place and “in her own world” because the environment was too much for her. Or that she was incapable of paying attention. Or that the science lesson was beyond her ability to understand. After all she’d never been in a mainstream science class like this before, never had a chance to go over the pre-requisites.

But by now we know how the story goes, right? We know that this journey has always been about trusting that there’s more than what the eyes can see.

The fact that she controlled her body to stay for the entire 55-minute class is huge. Beyond huge. With every fiber of her being she wanted to be there, learning new things with her friends. It is strength and willpower on a whole ‘nother level.

At home I asked her what she learned in science class, and she typed her response…

“i learned that photosynthesis helps plants make energy and the sun helps make glucose”

And then she gives us the chemical formula for glucose.

Below, not a perfect video by any stretch. Seizure meds in the background, for example. And Hope recorded it while trying to suppress an attack of hiccups. So it is pretty wobbly at first, but the video quality does improve. It took nearly 10 minutes to type 14 words. Still she types, and I see a girl demolishing every obstacle in her way – the sensory overload, the motor planning challenges, the racing mind, the Doubters. She triumphs over it all and demands more.

And she does it with one finger. One letter a time.

Love, Rhema

2016 is the year Rhema’s communication via her letter board took off.

Her words are a gift, one of the sweetest I’ve known.

Some of our favorite Rhema quotes this year…

God will finish what he starts in me
i think that what has happened to me
has meant that God loves me so much
that he would use me to tell my story of how i have been saved

*

Talk to us like normal so we feel important
We may not respond with our timely voices
but still know that we hear you and think you are lovely to speak to us
So much of talking happens inside with autistic people
so we dont try to engage like others
but we want to so much
So try to remember this too
Strong to make others stomach the uncomfortable
but we are thankful when you do your best

*

He is my song when the world is hard
He is my song when the noise is too loud
He is my song when the morning comes and the night is over
He is my song when the good is here and the bad is too
He is my song when the storm is raging in my head and i cant find peace
He is my song when i believe
He is my song when i trust in his mercy
He is my song when i am worn to the bone my soul is tired
He is my song when i give my story of his love to the world

-Rhema’s thoughts on Exodus 15:2, “The Lord is my strength and my song, and he has become my salvation; this is my God and I will praise him, my father’s God and I will exalt him.”

*

I think it demands prayer to heal so much division
Love gets given when we love God like he loves us

*

My understanding of math comes from an ability to remember what numbers sound like
Numbers have sounds that I can hear so strongly
It sounds like music in my ears
It is so strong that I have trouble hearing anything else
Numbers each have their own notes that make a beautiful song
It is so strong my ears have to try to adjust to the sounds
My favorite number is seven because it sounds like lovely chimes
And my least favorite number is four because it sounds like a bad note out of tune
I love numbers because they store themselves in my helper head
They store themselves together in songs that I can remember
They make a beautiful symphony
My helper head is happy to hear this music
I cant wait to hear more and more
Thank you for listening to me

*

i have plenty to say about how i am weak but He is strong

He is strong in my so weak self

He is too strong not to save

my strength is limited but his is not

i have no strong thing in much of anything

God is helping me so i can have my story told

it is only in him i can do anything

*

“Long ago a man had a pet lion.

He taught the lion to be a dog.

This lion tended to his sheep.

Then one day a cat saw the lion and revealed the truth.

The lion first ate the cat.

Then he ate the sheep.

Finally he ate the man.

Moral: never reveal too much.”

*

To not speak is so hard
but I still trust that I am in His hands
He really will help me to make my story told
My hope is that I will be someone who spreads Gods joy

Not having my speech is not easy
but I can speak in my heart
I can say I love the Lord
He is so good to me
He gave me my hearts desire
He gave me 325000 people to hear my words

I will always pray to God for others to find their voice

*

“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”

*

I would tell the people to not give up
I would tell them to not remember the pain
but trust that God will make a way for them to have their voice
I will pray for you
~Rhema’s message to her friends still searching for their method of communication

*

Really nothing makes me happier than people knowing the real me
Real me is good to know

I think that God does everything well
And he made us everyone special

*

Nothing makes me happier than writing on my blog because you believe in me
I’m so thankful for you
really every time I try to thank you I feel inadequate
You have given me hope and something I will never forget, that is worth
Thank you for helping me this year
Love Rhema

love-rhema

Grumble

rainrhema

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!

rhema_jess

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.