On sound

I think that sound is so interesting

It really makes me want to learn more

Nothing makes me happier than to study science

As an autistic person I can hear songs in trees

I can notice my songs in the small things like motion and sound

I can hear songs when no one is listening

How lovely it is in my ears it sounds so sweet

It is perfect pitch

I can hear whatever sounds sound like to me

I can also hear music in the wind and waves

It is so lovely in my ears

I can be thankful I can hear so much

~Rhema

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Gifts

It was my birthday.

After a hectic day at work I just wanted to go home, change clothes, clean the kitchen and help the girls prepare for bed. (Brandon was out of town).

When I arrived, Hope eagerly gave me a pretty blue necklace that Dana had helped her buy. (You know Dana… our beautiful friend, sitter, caregiver, might-as-well-be-a-member-of-the-family). My sweet girl used her piggy bank money to get the gift.

Rhema threw my purse on my shoulder and took my hand, ready to go for our evening drive. Hope and I chatted about our day in the car and Rhema rocked back and forth in her seat.

Back at home, I was happy to be “in” for the night. We’d only been home for a few minutes when Rhema grabbed my purse and keys again and pulled me to the stairs.

“Rhema, we just went for a ride. We’re done.”

She dragged me down the stairs.

“No. We’re not going. I’m tired. We’ll go again tomorrow.”

She pushed my hand to the door knob.

I was exasperated.

“No! You need to eat and get ready for bed. We just went for a good long ride. No more tonight. I don’t want to go.”

I turned and went back up the stairs, did the dishes. Rhema remained in her spot by the door with my purse and keys. Finally I got her letterboard. (She is currently faster on the letterboard than the keyboard).

“What do you want?” I asked.

“i want to go to the store.”

I groaned. “What do you want at the store? Yesterday you said you wanted to go to the store and we went and we stood in the aisle for 10 minutes and then you wanted to leave. Which is fine. But it’s late now and I don’t feel like standing in the store tonight.”

I should have known. I should have seen it coming, right? I didn’t.

“i want to get something to give to you.”

My heart stopped for a moment.

I knew she knew it was my birthday. She had spelled ‘happy birthday mom’ that morning, and I had marveled at the fact that just a year ago I didn’t know for sure if she even knew what a birthday was. Happy day, indeed!

But this? I couldn’t believe.

“What…? Can you spell that again?”

“i want to get something to give to you.”

My eyes watered.

“Oh Rhema. Thank you. I… I don’t need you to get me anything. I have everything I need and want. You and Hope are the best gifts.”

Then she spelled, “not enough to show our love.”

Oh my Lord. Is this for real? Is this really real? (I said that out loud.)

We drove to Stop & Shop – me in a daze and Hope giddy with excitement to see what Rhema would get for me.

Rhema stood next to a wall of batteries and covered her face for quite some time. Hope said she was thinking…

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Then inspiration struck and she rushed to the freezer section.

She grabbed herself, I mean, me a box of Popsicles.

 

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All I ever wanted. Ever.

How I love

I think that people with autism feel more emotions than others

They have so much feelings inside

They love so much that it is hard to keep it in

They may not show it the way others do but they want to show love

I show love by making my family proud of me

I show love by loving God with my heart

I show love by helping others understand what autism is like

I show love by praying for others who have not found their voice

I show love by having my voice heard

 

I would like to say that my hope is in the Lord

I have so much hope now that I have my voice

I have my really good voice so I can tell the world about my hope

I have so much love for my family that I cannot keep it in

I want to tell the world about how much I love my family

My mom is so good to me

She is my reason for never giving up

She is so much my most best friend

My dad is my good dad

He is loving and mostly patient

My sister Hope is the best sister in the world

She is so happy all the time

She forgives me when I hurt her

I love her more than anything

~Rhema

2015 family photo by Kerrie James

2015 family photo by Kerrie James

Thank you for the way you love us, Rhema girl.

On the silence…

*I (Jeneil) shared this on Rhemashope FB page and wanted to put it here on the blog as well*

“Rhema, what was it like living in silence for so long?”

She typed (typed!) her response one letter at a time. It took her an hour. I can’t stop thinking about it. I can’t stop praying for all of our children to find their method of communication.

Rhema’s words, shared with her permission:

i had so much pain in my heart i did not know good how to hope in hope i behaved very bad in the mirror i had longed for my voice i had no hope in my future i had no hope in my present i had not hope in my story ihonestly had no reasom to hope i had prayed to god for my voice had so much hope now in my story i got my voice

Psalm lyric

“I am so mad at my motor skills

I really have so much hope in God

He is my reason for everything

He gave his life for me so that I might live

 

I have my most high praise for Him

so high I could touch the heavens

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Nothing makes me happier than to sing my song to Him

I have so much my mouth wants to sing about

I cannot keep it in

 

He is so good to me

He is so much love

I am His.”

~Rhema

 

“Immediately his mouth was opened and his tongue set free, and he began to speak, praising God.”
~John 1:65

“She is like Zechariah. Her voice has been unlocked… and out comes… praise.”
~Rhema’s Nana

Voice

voice – expression in spoken or written words, or by other means
~Dictionary.com

Ever since Rhema began spelling on her letter board I’ve been thinking about “voice.”

I’ve studied the voice of Psalm 29- powerful, majestic, mighty. It thunders over the waters, strikes with flashes of lightning and twists oaks and cedars.

That same voice speaks out of fire to Moses and the Israelites, and out of a whirlwind to Job. To Elijah, it’s a still small voice.

I’ve been thinking about how Rhema prayed for so many years to have a voice. Only we didn’t know. We didn’t even know she prayed. She had no way to show us or tell us her deepest desire, her heart’s cry.

But God heard.

He always hears.

I know in those many moments when she has felt so alone, so muted, so sorrowful and angry by the daily challenges in her life, He has whispered,

I hear you, I see you. I am your God. I am here, and I am holding you. Don’t give up.

I know, I know, in times when I have been wearied and overwhelmed by the journey and felt sure that I couldn’t do it anymore, couldn’t give anymore, couldn’t help or hope anymore, He has shouted,

Get up. Keep going. I am your God. I will strengthen you, I will help you. Don’t give up!

One day He lit my tail on fire and Rhema’s prayer became my prayer even though I didn’t know it was her prayer. Then He laid down a yellow brick road, led us to the lock to the key.

Words can never tell how thankful I am for her voice, and even more that, His voice.

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Rhema, age 5

 

“I think the voice of God is so sweet to someone like me

It soothes me

It satisfies me

It makes mountains tremble and oceans calm

God speaks to me in my heart

He is close to me

He says he loves me” ~Rhema, age 12

Tell us a story, Rhema girl

Sisters playing, 2013, Photo by Kerrie James

Sisters playing, 2013, Photo by Kerrie James

Context: Rhema has only been spelling in sentences on stencils and using a keyboard for three months. Until now, she’s never had a way to really demonstrate her intelligence, humor and imagination. Over the past twelve years she has been described or assumed as having the expressive and receptive language of a 1-year old, lacking pretend skills, isolated in her own world; having poor sense of time and sequence, minimal ability to attend, and little understanding of emotions.

I am ashamed to say that, with the exception of occasional Bible passages, I gave up reading aloud to her around the age of 3 – the last book I read to her was The Foot Book by Dr. Seuss. Recently we began reading Little Women by Louisa May Alcott. Recently we began reading Little Women. (Yeah, I had to type that twice). She’s enjoying it and has so much to say.

I asked her to tell Hope and me a story. It took her 3 days to spell it all. My mind was already blown when she began with a title and ‘Once upon a time’…

 

The Sisters

By Rhema

Once upon a time there stood to sisters

How they loved to have fun together

They loved to always plan lots of good games

Time stood still when they were having so much fun

One day they were playing when all of a sudden the girls saw a mountain lion

They screamed Ah

They noticed it had high cheekbones and high chin on his head

They laughed at it because it had high cheekbones high chin on its head

They got a tall basket to climb on and they pinned him down

Then they hopped down and caught a ride home

They made a big bed for the lion to sleep on

Then they took it back to him

They would not make him sleep in the room by himself

They had almost been on the bed for ten minutes when it jumped on the ground

They tried to help him make his home on the ground

He was so happy to be home

He thanked the sisters for helping him

The end.