Hard conversation

Um… so.

The other day Rhema led me to her stencil board.

Yes, she took my hand and pulled me over to the table and picked up her stencil board. That kind of initiation just does not happen all that often, or ever. She had something to say. I sensed her urgency, and I was all ears.

“I UNDERSTAND THAT I AM LOVED BY YOU BUT SOMETIMES I FEEL SO MAD AT YOU BECAUSE YOU BELITTLE ME”

I gulped and my head pounded. There had been a couple times before when she told me she was mad at me, but it was for seemingly simple things like when I took her blanket from her because it was in desperate need of washing, or when I snatched an important paper away from her marker-wielding hands. But this. This was something altogether different. Her words were a ton of bricks on my heart.

“Rhema… I am sorry. When do you feel I have belittled you?”

“WHEN YOU TALK ABOUT ME AS IF IM NOT THERE”

I wanted to deny. And cry. And make excuses. But truth is truth.

“Rhema, I used to always say that you understood words and things happening around you. But on some level I must not have believed it because I was often careless, engaging in conversations about you right in front of you as if you weren’t there. Even if you were unable to comprehend language, I should not have done that. And now I know with certainty that you listen and understand everything… but I guess you’re telling me that I still do that sometimes… treat you as if you are not a hearing, thinking, caring person. I’m so sorry. I must do it without even realizing it.”

I put my forehead to hers.

“Thank you for telling me. Every letter you point to, every word you spell is honest. And you’re right, you are so very loved by me. Even more than you know. Will you forgive me? I’ve made many mistakes and still have so much to learn. Will you continue to be patient with me? Will you help me by letting me know when I am treating you differently or making you feel… small?”

My gracious girl answered,

“YES I LOVE YOU”

 

We have conversations now. Precious, hard, amazing conversations. It is a blessing I hope to never take for granted.

And the girl whom everyone thought could not understand… helps us understand.

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Falls

Rhema and I studied waterfalls – the science of waterfall formation, types of waterfalls, famous waterfalls. All of this in preparation for the day our family would hike with a small group to Auger Falls in the Adirondacks.

It was a beautiful day for a hike. We struggled to keep Rhema walking, moving in the right direction, and staying in the appropriate areas. I wasn’t sure if we were brave to have attempted the excursion or just plain foolish.

But we made it to the waterfall. We learned that Auger Falls got its name for its resemblance to the corkscrew shape of a drill bit. Sounded like my insides, my heart all spiral-y and twisted. The Falls were a great sight, but I was distracted. Distracted about Rhema’s safety and how hard it was and so much sadness in the world and things going on back home and…

Alexis, one of our guides pulled out her Bible and read Psalm 29.

“Rhema,” I whispered loudly. “We studied that Psalm and now she’s reading it here at the waterfall!”

“Ascribe to the Lord glory and strength.
Ascribe to the Lord the glory due his name;
worship the Lord in the splendor of his holiness.

The voice of the Lord is over the waters;
the God of glory thunders,
the Lord thunders over the mighty waters.
The voice of the Lord is powerful;
the voice of the Lord is majestic.”

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Our group continued hiking along the river, but Rhema could not continue. We went back the way we had come, accompanied by a guide.

Back at our cabin I asked her thoughts on the Falls, and she spelled this on her letter board:

“I loved seeing the waterfalls especially when we approached the area beside the trees.

It was so lovely to my senses.

I will not have mediocre thoughts about God again.

I am truly thankful for the experience.”

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