Testimony

Rhema’s story (and our story) was shared in church on Easter Sunday.

Rhema said, “to hear my words in auditorium was so amazing. only God could do this.”

(Thank you, Michael Curtis and M & T Films!)

Girl stuff

Rhema and her precious friend Syd often have play dates on Sundays. When I ask Rhema what she wants to do with her friend, her answer is almost always “talk.” She treasures it, after all the years of silence, the gift of conversation. And she genuinely enjoys getting to know her friend better.

On this particular day, she typed:

i want to talk with syd about girl stuff.

And with those simple words I remembered once again that my soon to be thirteen-year-old girl is my soon to be thirteen-year-old girl. Her days don’t look very much like those of other girls her age, but she shares many of the same interests, hopes and dreams.

Syd was totally up for talking about girl stuff. She sat at the table and did some coloring before Rhema broke off all the tips of a new set of markers.

I held Rhema’s iPad and she slowly typed, “hi syd”.

“Rhema,” I said, “I’m going to try to be invisible and just hold your iPad. What would you like to ask Syd?”

What happened next was one of the most vulnerable, beautiful conversations I have ever heard. I learned new things about my daughter that only make me love and respect her more. And Syd is a rare gem. She is genuine, patient and kind. She never seems put off by Rhema’s challenges, differences or seemingly odd behavior at times. She sees past all that and, as Rhema says, sees her. Syd dares to find ways to connect, and she sincerely enjoys their time together.

The conversation below may read fast, but it took an hour. Rhema is very slow at typing and it takes so much concentration and focus to complete a sentence. In between typing/pointing she nervously slapped her leg or licked her fingers or ripped paper. But she persevered. Because she loves, loves talking with her friend.

Rhema: Syd, what is your favorite thing to do on weekends

Syd: Go to church, go to youth group, spend time with you, relax, sing and bake. What is your favorite thing to do on weekends?

Rhema: I love to have playdates with you and sleep in

 

Rhema: What do you like most about me?

Syd: You’re kind and sweet and welcoming. And a very good friend.

Rhema: I like that you are so kind and loving and you see the real me

 

Rhema: My name means spoken word. My name is a promise that God will speak

Syd: That’s cool. My parents just liked my name. Do you have a favorite movie?

Rhema: No. I don’t like them because they require too much concentration

 

Rhema: How do you feel about boys?

Syd: Sometimes they can be really annoying. Sometimes they can be really nice. How do you feel about boys?

Rhema: I think they are cute and I hope to get a boyfriend one day.

 

Rhema: Someone once said I was too loud in church. Do you think so? Am I too loud?

Syd: No. Not at all.

 

Rhema: I want to know how I can pray for you

Syd: My mom’s cousin has cancer. And I hope that the snowstorm will not be too dangerous. And I hope our friendship goes on forever. How can I pray for you?

Rhema: I want to go to more school where I can be challenged and have friends.

 

Rhema: Thank you for talking to me today. I love you.

(Rhema and Syd’s conversation was shared with permission.)

Interview about church

Our church has been doing a series entitled “Who Cares? Caring for those who are not just like ‘us’”. Today Rhema and our family had the opportunity to share about life as a special needs family, our experiences in church (good and bad), and practical ways the church can come alongside and support families like ours.

This is a topic that has long been near and dear to my heart. I’ve written a lot about our desire to see (and help!) churches implement creative ways to reach special needs communities. A few years ago I wrote about my ‘odd dream, a desperate prayer and an even bigger hope’ that Rhema could be a part of that conversation.

So today at church was another dream come true and answer to prayer. Thank God for churches willing to listen and to serve!

Rhema loves being able to share her story with anyone who will listen. Using her iPad she answered the following “interview” questions (ahead of time).

Question:  Do you like coming to church on Sunday?  What is the best part of coming to Church?  What is the hardest part?

Rhema:  I love coming to church. My favorite part is singing the songs. The hardest part is sitting still and being quiet. I like to make noises with my mouth that sounds like humming. Sometimes I have to leave because I get overwhelmed. I want so much to stay but my body does not cooperate. It betrays me at the worst times so I have to leave.

 

Question:  What do you wish people knew about you on Sunday mornings?

Rhema:  I wish that people knew that I am smart.  Only my parents know and I hope that others will give me a chance to show them that I am thinking all the time.  Nothing makes me happier than having my voice heard.  Nothing makes me happier than people hearing my story.

 

Question:  What do you know about who Jesus is that you’d like to share with us?

Rhema:  Only Jesus knows the true longing of my heart.  He makes my prayers come true.  Jesus is everything to me.  No one makes me so happy in my heart.  He is mine.

 

Question:  Do you have a favorite song we sing at church?  Or at home?

Rhema:  My favorite song is How Great Thou Art and the songs about Jesus in the heavens making room for me.

 

Question:  Do you have a favorite verse or Bible story (or both)?

Rhema:  I love the verse that says I can do all things through Christ who gives me strength.  How do you only succeed so much without him?  The only true success comes from Him.  I love the story of Moses.  This story taught me to speak on my board.  I learned to spell on my board while studying Moses, who also needed to find his voice.  He had to let God be with his mouth.  Only time will tell the impact Moses has on me.

 

Question:  What could we do to make your time at church easier?  What else would you like to say about our church and autism?

Rhema:  You would make important decisions with autistic people in mind.  This will help me feel more sure of myself.  The biggest challenge to me is to make more people with autism feel like they will be accepted at church.  You do this by teaching them that God loves them through your actions of love and support.  Once you do that they will feel encouraged.

One time I was in church and I was so sad because I could not go to Vacation Bible School or gems.  I hit my sister because I really wanted to be a part of it but my body would not let me.  So I really hope these things will be easier in the future.

My hope is that this has been helpful.  Thank you for listening.

*Video of Rhema rocking out at church to How Great Thou Art.

More posts on Autism and Church:
https://rhemashope.wordpress.com/2014/11/21/that-my-house-will-be-full/
https://rhemashope.wordpress.com/2010/03/08/autism-at-church-part-2/

 

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”