something i want to say

In 2017, Rhema moved from the letterboard to the keyboard.

Some of our favorite Rhema quotes this year:

to you i am a girl who found her voice but i am a bird who has taken to the sky .
i am a hyena who laughs at the world .
i am a frog who jumps for joy .
i am an aard vark who . play s all day . with worms .
i am a lion who rulles the day. 
i am a giraffe standing talle r than ever .
i am free.


Only receiving answers to prayers does absolutely nothing
To notice how much God shows his love we have to learn to trust when the answer is no


“I do not want to cure autism
Autism only is a part of me
that I like
and sometimes I do not really like
but I am fearfully and wonderfully made
so I dont want a cure
I want to be me”


Something I want to say is nothing to say is ok. So many people think that they need to speak but sometimes silence is golden. I was silent for twelve years and I learned so much by listening. To have no voice taught me to cherish words and I try to use them carefully. That is all I have to say today.


something i want to say is just because i cannot speak does not mean i dont hear . i hear everything people say to me or about me . i may not show understanding in my face but i know and understand . not a word said escapes my so strong ears . so remember to speak kindly to everyone . love rhema .


a dream my heart began inside 
that light made joy somewhere in the sky
my dream can soar and scale the heights
from heaven to the earth below
so I am in the clouds above
the somewhere into hell I really only visited
the armies of angels lifted me to my dreams again


Something I want to say is not having a voice sounds horrible but I learned to listen. That is how I learned so much. By listening to everything around me. The radio the tv, conversations all around. Only I knew that I understood it and one day I would be able to show it. I am thankful for that time as hard as it was.


 something i want to say is i like people who really think before they make judgements about autistic people . forget the differ ences and see me as a very caring girl who knows that i do strange things . i so am just like everyone else . i am doing what makes it possible to do the day . history repeats itself and really every minute i am hoping you see me for me 


Before I could use my board I could not tell people how I felt
what I understood
or if I was hurting.
They often treated me like I was a baby. This was so frustrating to me but I hoped one day they would know the real me.
Someone once said I was stupid because I could not talk. This hurt so much.
Only now can I look back and see that it made me stronger.
Now I have my voice and lots of people read my words. This makes me so happy.
The silence is over.
The pain is gone
and I am free.


I want teachers to know that I am smart even though I might be slow on my board. Sometimes I can’t seem to make my mind slow down but I am always thinking. I want teachers to give students like me a chance to really get a quality education. Someone said to get a high school diploma you need to have taken certain classes. I have not. But I hope that will change so I can become a scientist and use my mind to help others. I think I have a lot to offer to the world. This is my hope.


I am so happy for my birthday. To be a teenager is a dream come true. I am excited for the future and I know God will help me suceed. I am confident that He has good plans for my life.



something i want to say is that autism acceptance starts with people believing that everyone deserves a chance to access a fair education. i hope to help other autistic people like me become advocates because this is the only way to make our voices heard. i hope people will listen to our words because we have a lot to say to the world about what it means to be autistic. many people think they knowbut they do not. autism is a complicated disorder. not everyone is impacted as much as me. but i am smart and i hear music in numbers and trees and grass. i am happy to be autistic even though its hard most of the time. so much of my words come from God. he is helping me live this life. to have my voice heard means the world to me. to have people encourage me also means the world. to have a company of encouragers is the best gift. thank you for listening to me.


i hope to be a scientist one day. i hope to go to high school and college one day too. so many possibilities are open to me now that i have my voice. 
not being able to go to whatever school i want makes me so sad. i should have access to the same education as anyone else.
i know i need lots of support but i believe it is worth it.
someone once said the best students are the ones who really want to be there. that’s me.
so i will never stop trying to get the best education i can. i owe it to me and my family and other autistic people who have yet to find their voices.


i want you to know that i am autistic and that is something i am happy and sad about. i love that God made me this way even though it is so hard sometime. i can hear music in trees and grass and numbers have sounds that make me so happy. i also can remem ber just about every thing i hear . the reason i said it makes me sad is because i cant talk with my mouth and that is so hard to not have the ability to just speak whenever. i know it seems like i am not smart but i am . i believe one day i will show the world that autistic people are smart and want the same things as anyone else. thank you for being patient with me while i learn to sit in class. i want to have an education that helps me reach my goals. thank you for listening.


some thing i want to say is not so many people think about autism like a gift. but i do. i experience so many thing s like colors and sound s and emotions and dimensions of time i n a way that only i can. this make s me so happy . i see details i n flimsy grass blades and green caterpill ars . i can rem ember almost every sound my ears hear. it is store d in my helper head. i can think about my autism as a gift and that hellps me on days that are hard. the bible say s that to be content is a secret and i think i am learning contentment in my aut ism. 

i feel to awesome for words be cause its the day god has made . i cant for get his love for me . do you know so mu ch love i n any o the r. i do nt eith er.


so mething i want to say is my grand pa died this week. he resides in heaven now . i came to his house and looked for him but he is not here . he is with his savior and he is so happy . i miss him so much even though i dont cry . he always told me he loved me and was proud of me . have you ever jumped on a trampoline my grandpa gave me mine . he read his bible every morning . he will always be in my heart . love rhema .

 when i was little my grandpa took me for a ride in the 4-wheeler . hope was with us . she was counting deer . then grandpa said theres dinner for all of us . i thought it was so funny and i still remember it . that was grandpa .
love rhema .
i must create some thing good for my life . that is really what grandpa would want . i pray for god to hellp me . to do it . every day .

i am thankful for my autism because it teaches me to trust God . My body is not something i can trust but the God who made me is . he not only made me autistic he made me not able to speak with my mouth but with my heart . The gift of my voice is my sweetest song of praise. i want to sing and sing . i not only want to sing i want to share my song with the world . my hope is in the lord . i thank him . for he is always good .


to be autistic is to be a gorilla in a tutu. your clothes never fit quite right .

to be autistic is to be a dinosaur making large footprints on the earth . your body is not for this age .

to be autistic is to be an eagle with too strong eyes . your eyes see the miniscule details others miss.

to be autistic is to be a hippo with birds on your back. you still feel the itch.

to be autistic is to be a lizard who basks in the sun. you feel the heat and it invigorates you and drains you.

to be autistic is to be a telescope seeing the world with microscopic detail .

to be autistic is to be a megaphone every thing is too loud .

to be autistic is to be a beautiful idea of how to experience the world

to be autistic is to be a butterfly ready to fly .

this is me.


love, rhema


Progress Note

Years ago, I began reading The Reason I Jump by Naoki Higashida. Naoki is a non-speaking autistic young man who communicates through the use of an alphabet grid and computer. I was eager to read his thoughts, hoping to unearth insights into my own daughter, hoping to find a reason to believe that she too had words inside waiting to be unlocked. But as I read, I discovered that Naoki did have some spoken language. It was largely echolalic language, but that fact alone caused me to put Naoki in a different category, a “higher” category than my girl. Rhema had no spoken language – the few words she was able to say when prompted had essentially faded away. I reasoned she could not achieve the level of communication Naoki had. Deflated, I put the book away.

I didn’t realize my error: mistaking communicative non-functionality for mental non-functionality.

Thankfully, thankfully, my misconceptions began to change in 2015 when an RPM (Rapid Prompting Method) provider taught my daughter an age-appropriate lesson on the Ice Age, and I watched her respond appropriately and accurately to questions about the lesson. Later I would discover that my 11-year-old (at the time) whom I thought did not know the alphabet letters had taught herself to read at age 5.

Much of her schooling and therapies seemed to be structured around the concept that Rhema’s severe autism represented developmental, cognitive delays. I never questioned the experts who said we should speak to her in simplified one and two-word phrases: “Give ball”, “Shirt on”, “All done”.

It did not occur to me that when she consistently failed to properly identify the tree in a 3-picture array that it was because of a mind/body disconnect. Her finger tapped the picture of the car in the array while her head composed poetry:


Rhema words, along with other autistic non-speakers or minimal-speakers – Ido, Emma, Phillip, Coco, Graciela, Kaylie, Josiah, Diego – opened my eyes and continue to teach me. I listen to them now, their voices the loudest.

As parents and educators, what will happen if we begin to re-think long-held assumptions about autism? If we resist comparing individuals to non-autistic or even autistic peers (like I did with Naoki) and see their development as their own? If we stop pretending to presume competence and truly do it? What if we assume that behind the silence and the erratic impulses and the lack of eye contact and seeming lack of attention, there is a mind as creative, inquisitive, insightful as our own… what if we adjust the curricula accordingly? No harm done if we do. But what if we don’t?

Less than a year ago, at age 13, Rhema’s school progress notes said the following:

“Rhema is asked to point to hard or point to soft, when presented with a hard wooden ball and a cotton ball. Rhema was 67% correct with teacher assistance.”

“Rhema worked on identifying name, letters and sounds for B, D, and F.”

“Rhema completed a labeling functions of objects program (crayon, book, chair and pencil).”

This year Rhema is homeschooled for language arts and history and enrolled in middle school math and science classes. She is studying everything from geometry to Newton’s Laws of Motion. It’s been a long, hard road. It’s still hard every day. Her anxious body betrays her constantly. She needs many, many breaks. It can take an hour to type a single paragraph. Some days her body is so disorganized, she cannot type at all, so she spends hours trying to get ahead on the homework. She is thrilled to have homework.

Her teachers have written that Rhema’s test scores have been regularly strong and she demonstrates good mastery of the topics covered. In fact, she received all A’s on her report card.

She is sharing letters with friends, speaking to college classes, contributing to a book, and participating in the TASH Atlanta conference next week. She sits in the back seat of the car with her sister and the letterboard and entertains us with stories and rhymes. She’s an incredible storyteller. It’s a suffocating, terrifying thought to realize that I might never have heard her stories.

All she needed was a chance.

She needed teachers and a learning community that dared to see beyond the challenging “behaviors” and find her strengths, to include and welcome her (– keyboard, letterboard, crazy-Mom-aide and all), to value her as any other student.

It’s so important. It’s life-altering. It’s hope, new hope, for our Rhema.

~Rhema and Hope’s mom


i am so happy about my grades . i remember when i thought i would never be able to make my thoughts heard . now i am going to school and finding the world and my dreams . only god knows how much i have longed for this. you are not underestimated all your life only to be given a chance to exercise your in telligent mind. but it has happened to me . my good god made a way. my good teachers dont treat me like a baby . my really good mother never gives up. my really good father never stops supporting me. my really good hope always encourages me to do my best . like the way my teachers said i am a blessing to have in class. the end. love rhema .


Snippet from Rhema’s recent report card.


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:


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.



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.