Car talk

“A straight path never leads anywhere except to the objective.” ~Andre Gide

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I’ve been trying to help Rhema feel comfortable using her stencil board (and eventually keyboard) in other places besides the room in our basement where we do RPM lessons.

Yesterday she very much wanted to go for a drive so she went to the car and sat in her seat. I knew she was anxious to get going… but this was the perfect opportunity to use her stencils and find out where she wanted to go! We go for rides all the time, and I never know exactly where she wants to go.

So I slid into the driver’s seat, handed her a pencil and held up the board.

But it felt awkward in the cramped space. And when we study together I always sit to the right side of her.

So I jumped out and ran around to her side of the car. Opening her door, I crouched beside her and eagerly asked, “Rhema, what do you want?”

I waited.

She spelled, “I WANT YOU TO CLOSE THE DOOR.”

Bella letters

I began corresponding with Bec, mother to Bella, a year ago. During one of my late nights studying everything I could find on RPM, I watched a video of Bec and Bella doing RPM. At the beginning of the video they appeared to be struggling a lot – and that is just what I needed to see because Rhema and I were struggling so much! The video showed Bella’s remarkable progress over time and that was also encouraging.

Bec wrote to me, “Can’t wait till Bella and Rhema write to each other.” At the time I could not, dare not imagine such a thing ever occurring. But Bec seemed so confident, and it gave me hope.

Fast forward a year and I found myself typing the words, “Bec, I can hardly believe it. But I think Rhema’s ready.” Ready for the girls to have a chin wag, as Bec calls it.:) (They live in Australia.)

When Bella’s letter arrived in my Inbox, my tears immediately started flowing. I forwarded it to Brandon and he cried, too. (We are total crybabies now.)

Hi Rhema

My name is Bella and you are wonderfully made as am I. Are you enjoying being heard? Can you believe how awesome God with parents helped us? I very much like eating sweet treats and when I can I like to go swimming. Are you a sweets fan? My favourite new treat is white chocolate. Do you like school? I am so working hard to stay at school. Never thought I would be included. Have a good day.

Your friend Bella.

 

As I read Bella’s letter to Rhema, she hummed and scribbled on paper. She never looked up. Without even seeing her face, I just knew it was a moment we’d always treasure. I knew that she was experiencing a special connection of friendship in a way she had never known before.

As soon as I finished reading Rhema pointed her pencil at the stencil board. I spoke aloud the letters and words she spelled, and I bawled.

 

Hi Bella,

So good to meet you

So much to tell you

I have my voice now

I have so long wanted a friend

I have love for you even though I have never met you

I love being heard

I cant believe how God ansered my prayer

I like my good mom my sister Hope and my dad

I miss you

Your friend Rhema

 

Hope begged me to let her write to Bella, too. Upon reading her letter, I bawled again.

Bella, I’m Rhema’s little sister, Hope. I am so happy for both of you! I’m happy you found your voices! I know God will do great things in, for and through you. I am 9 years old. My birthday is December 5. When is yours? I like sweets too. Rhema LOVES popsicles. I also like to swim. I like traveling, playing piano, playing soccer, drawing and writing. I have written books and am working on another one. Do you like to write?

My sister said that autism makes it hard to do life so when you get frustrated when you can’t make clear what you want (or just in general) remember this bible verse: “consider it pure joy my brothers, when you face trials of many kinds.” Sincerely, Hope

 

God is giving answers to prayers I never even dared to pray. My girl is not alone. She is beginning to connect with people who get her and communicate like her and share the same challenges, same joys.

A friend. My Rhema has a friend.

 

You can read more of Bella’s words on her Facebook page: Bella’s Walk

Mind and body disconnect

She broke the electric pencil sharpener.

I heard the loud grinding noise seconds after I’d turned my back.

I was not happy.

After yanking the plug I said, “I’ve told you so many times not to stick objects in the pencil sharpener. And now it’s broken!”

The sharpener had become very much a part of our RPM routine. She’d spell a word or sentence and I’d let her sharpen her pencil (whether it needed it or not). But soon it became a problem.

I fetched the stencil board and without hesitation she spelled, I AM SORRY. I SHOULD HAVE LISTENED.

“Why didn’t you listen?”

I CANT CONTROL MY IMPULSES. I SHOULD HAVE LISTENED.

These days I only pause for a second to marvel at the fact that she even knows what impulses are. This is the child I always thought had to be taught in a very slow, deliberate and methodical manner. Yet she has learned words, facts and ideas completely on her own. Her depth of understanding blows me away.

I sighed, “What are we going to do about your uncontrolled impulses?”

PRAY.

 

I’ve repeatedly read other autistic people – particularly non-speaking autistics who use alternative means of communication – express this same sentiment: that their bodies often do not cooperate. There is a mind/body disconnect that often leaves feelings of frustration, discouragement or embarrassment, particularly when people around them dismiss their behaviors as annoying, difficult, apathetic or unintelligent.

The fact that Rhema articulated a similar struggle was so insightful for me. I wanted her to know that she was not alone. Our friend Philip has written a lot about his struggles with impulse control. The next day I read some of his words to her:

I am in a body that does not obey my brain.  I am open minded but my actions are each day searching the peace of mind.  Tons of each day I am so tired from making my body obey my brain.  I am always estimating to overcome an impulse.  Impulses come in many different forms.  I may see food and out of the blue it makes me wholly tuned into it.  I am really too slow in my thinking to stop myself from taking the food.  I feel bad after.  I think I really need to readdress understanding real need to control my body. ~Philip, March 2014

I am dealing with awkward behaviors all the time. At school I sometimes pace when I should be sitting or I shout out when I should be quiet. People think i am doing it on purpose. I am not. I get caught momentarily mightily by an impulse. My body cannot stop itself. I momentarily lose control. People can plead with me to stop. I want to listen but at times my body won’t obey. Ramming against a caring mind is my body. Going near loud noise hurts me literally. I am each day daring hard to fit in.  A tame mind can ease my day. Peace comes day to day from people who accept me at home, school, and church. ~Philip, January 2015 

Philip on the difference between impulses and stims:

Impulse is trying to reach for peace momentarily but it is opposite in potential. Peace never comes from acting on impulse. It only brings remorse. Unlike impulses, stims are necessary for living. Stims should be tolerated at times. One day you might learn to appreciate them. Ceasing to stim bodes poorly on my thinking. Lots of thinking happens as I pace, flap, or use another movement. I think stims are healthy but impulses are not. Help me by stopping impulses but allowing stims as long as they do not hurt anyone. ~Philip, January 2015

I asked Rhema for her thoughts and she responded:

I HAVE SO MUCH TROUBLE WITH MY MOTOR SKILLS

I AM HAPPY TO HEAR THAT OTHERS HAVE THE SAME STRUGGLES.

IT IS SO HARD TO HAVE MY MIND NOT HAVE CONTROL OVER MY BODY.

 

So when another object shatters on the floor, I am trying to understand. When she flops in that same spot in the store or when she seems to ignore my directions, I am cutting out my groans. Even when her actions unintentionally hurt me or others, I am trying to look past my pain and see hers. And so, the girl who some assume lacks emotions and understanding, is teaching me compassion and empathy.

“I don’t have trouble with impulse control the way you do, Rhema. But on some level I get it. Paul wrote in Romans thousands of years ago, ‘I do not understand my own actions. For I do not do what I want, but I do the very thing I hate.’ I know this experience inside and out, over and over. So many times I’ve cried, “I am sorry. I should have listened!” Every day I have known the amazing grace of Jesus that saves my life. Every day! And forbearance and forgiveness from loved ones in my life. Grace is a patient teacher; it motivates me to try again.”

I HAVE MY HOPE IN THE LORD TO PERSEVERE

I HAVE SO MUCH HOPE NOW THAT I HAVE MY VOICE

HE WILL GIVE ME STRENGTH

SO I WILL NOT GIVE UP

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Notes so far

TREES HAVE MISTERY IN HOW THEY MAKE MUSIC
THEY MAKE MUSIC GLORIOUSLY
HOW THEY SING
TREES SOUND LIKE MUSICAL NOTES IN MY EARS
~Rhema

Rhema at age 2, listening to trees

Rhema at age 2, listening to trees

1) She hears music in the trees.

Yet when presented with verbal stimuli and asked to identify a tree in an array of four images (for e.g., a cup, banana, duck and tree) during a standardized assessment, she may or not be able to select the tree. Even though she loves markers and uses them every day she may only be able to demonstrate that she knows the function of markers with assistance and prompting by her teacher. In fact, she may engage in behaviors or seem to exhibit decreased attention when tasks become more challenging. Thus, she presents with “extremely low” receptive language skills. Year after year the evaluation scores are the same. The Peabody Picture Vocabulary Test – Fourth Edition may say she cannot label a tree… but now I know, I know, she has a poem about trees dancing in her head.

I’m so glad I know.

It scares me to think of how much I once believed and accepted assumptions about autistic people like my daughter – that she lacked understanding of emotions, that she needed to be spoken to in simple language and have things repeated over and over in hopes she might get it, that if she could not demonstrate that a hat is an item you put on your head then she must not know the function of a hat.

I’m so glad I know that tests, evaluations and experts have their place. But as Emma on Emma’s Hope Book wrote, “There is no test that allows me to show the creative ways in which I learn.” And that, “Believing in the potential of all students is not on any test.”

2) When I began working at home with Rhema, one of our biggest struggles, I thought, was in the area of attention. I wanted to write words on paper and show her how to use a pencil to point to choices on paper. She wanted to scribble intensely or shuffle the papers or erase whatever I wrote or break the pencil tips or bite the pencils, etc. Our learning time started as a tug-of-war over a writing utensil and usually ended with a pencil stab and a paper cut. One day I decided to remove all the pencils and markers from the room. I thought I would command her full attention once the distractions were gone. That of course backfired, too. I soon learned – with Soma’s help – that Rhema was attending all the while she feverishly scribbled on paper. So I let her color and scribble while I taught a lesson. When I asked questions, she learned to spell her answers very well.

In the beginning I was tempted to simplify the lessons. But I found that when we studied age appropriate material she became more engaged and so interested that she paused in her coloring to peer at what I was writing. This, from the child who is visually selective and has always struggled with joint attention.

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3) It seems miraculous. Rhema’s ability to spell and share her thoughts after so many years of silence. In fact, I asked her how she learned how to spell (because several people asked me and I didn’t really know.) She said, “I learned how to spell by noticing how letters worked.” She hums and rocks and needs continuous support throughout her day, she rarely makes eye contact and shows almost no emotion on her face. And yet in her words she communicates a depth, maturity, understanding and love that leave me speechless. Nearly every day tears of joy and amazement fill my eyes as she shares more and more with us. It’s unbelievable. And yet totally believable. It’s more than a miracle. She has worked so hard – almost every day for the past year – to be able to spell on stencils (and now type). And now we are blessed to see the fruit of that work.

Many years ago I read a beautiful piece by a father of a special needs child. He described his idea of erring on the side of “overbelieving” in his daughter. As Rhema’s parents, Brandon and I have tried to do that. The past couple months we’ve been able to get to know our girl in a way we could only dream of before… and we’ve discovered that our “overbelieving” was sorely lacking, that we’d been underestimating her all along.

And yet… and still she says to us, “Thank you for believing in me.”

So. All of our expectations have changed. The way we speak to her has changed. The way we envision her future has changed (-Rhema doing college level work someday is no longer outside the realm of possibility). The way we view her learning has changed. Now we know that speech – or the lack of – is not an accurate reflection of her intelligence.

As the father I read once said, ‘She has taught us that everyone needs people who love them enough to overbelieve in them.’

So far she has shown her own funny, amazing, Rhema-way of ultimately exceeding every expectation.

Gratitude

When Rhema uses her stencil board or types I try to record it on video. Below are snapshots from last night’s video as she spelled her message. See, feel, hear her joy.

I’ve told her of the people who have cheered her, prayed for her, followed her story (some for many years) and who are celebrating with her now. I read every comment, note and email to her. This is what she wants to say to you:

THANK YOU FOR BELIEVING IN ME

I HAVE SO MUCH TO SAY

HOW I LOVE LIFE

I HAVE LOVE FOR YOU ALL

BECAUSE HE LOVED ME

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The Talk

I have never talked to Rhema about her autism. Our family has talked about autism around her, but for so long I incorrectly assumed that we could not have a conversation, that she would not understand.

The fact that we can now have a conversation about almost anything still blows my mind and makes me want to cry and dance for joy. Sometimes I type the words that she’s spelled in caps. That’s not proper netiquette, I know. Capital letters make words louder. And that’s just fine by me. After 12 years of silence, I hear her loud and clear.

Yesterday we went for a drive and things were not in order in her mind. She became upset in the car and lashed out at me. It was not a pretty moment – for either of us.

We arrived home and she went to her chair where we do RPM, and she cried.

I came over after a while and picked up her stencil board.

“Rhema, why are you crying?”

“I AM SAD.”

“Why are you sad right now?”

“I HAVE A(V)UTISM.”

“What about autism makes you sad, baby?”

“I HAS HIGH EXPECTATIONS.”

“Yes, I know that. You’ve told me before that you have high expectations.”

There was a pause as I searched for words. I didn’t know what to say so I just asked her if she had anything else she wanted to say.

“AUTISM MAKES ME SO MAD.”

“I get that, Rhema. It must be so frustrating sometimes.”

“I HAVE HARD TIME DOING LIFE.”

At that point we put the stencil board down so that I would not cry. For a minute I just needed to try to process it all – the joy that she could finally share these things and the heartache over the words themselves.

“Rhema, I have something to tell you.” And then I kind of laughed. “I think you know this but I write a blog and I’ve been sharing with people about what’s happening with you… how you’re communicating now through pointing to letters and typing. Someone who reads the blog wrote me this: ‘Please tell Rhema I’ve been praying about something last night, and in her wisdom, she just gave me the answer today. Tell her thank you!’ So Rhema… I guess what I’m trying to say is… I know autism can be so hard sometimes… and I know I don’t even know because I’m not you. But I believe God has a good purpose for your life and He can use even what you’re going through now.”

“I HAVE AUTISM SO HIS GLORY WOULD BE REVEALED.”

 

I thought about the countless times a scenario likes this has played out where she became overwhelmed or upset, when she put fists to her eyes and wept. And she could never express why.

I thought of the years of seizures and hospital stays and the medications with a host of side effects still today poured into her already dysregulated body. And she could never say how she felt.

I thought of the years of pain – when she would repeatedly bite her hands and arms so badly we’d have to ice them and the school nurse recommended we take her to the hospital for her injuries.

I thought of the years of screaming. The many times I’d walk into her room and find the floor covered with clumps of hair she pulled out. She did not have the ability to say, ‘This life hurts!’ or ‘I am sad’ or ‘I am mad.’

I thought of the years she has been treated like a baby or spoken to like a baby because of her outward behaviors and inability to speak. And disregarded and not included as if she did not have a working mind.

And yet, with her words, she says to me that all of this, all of The Hard, is worth it. If it somehow brings glory to God. Every day it’s worth it.

And if she can say that, then Lord help me, so can I.

I can get off the floor. I can lift my head as the tears fall and say,

“Thank you. Thank you. For your glory, God.”

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On words and song

So much has been happening with Rhema’s communication I don’t even know where to begin. I alternate between wanting to shout from the rooftops every little thing she spells on her stencil board to needing to keep it all close to my heart and sit with it a while.

The lines from a U2 song:

I want to trip inside your head
Spend the day there…
To hear the things you haven’t said
And see what you might see

After nearly twelve years of silence we get to do that. And it is awesome. It truly is like God has opened the floodgates of heaven and poured out a blessing so great we can’t even take it all in.

Friends, family, and some therapists who work with Rhema have said to me, “You always believed.” That’s true, but I only had a little belief… just enough to keep hoping and keep trying.

And I guess all anyone ever needs is just a little faith. A little faith with proper tending will take root and grow into big faith that can move mountains.

She is still Rhema. She still needs support with every part of her day. She still struggles to live in a body that repeatedly betrays her and navigate a world that often overwhelms her. It’s often hard to believe that the girl I see is the same girl who is now able to share her beautiful thoughts. So far I’ve yet to hear a trace of anger or bitterness or discontent in her words. Only thankfulness.

I’m taking notes from both of my girls about genuine faith – what it means to simply believe. Regardless of the past or future or circumstances or what others might think or say.

“So love God my heart sings.”

That’s what she said/spelled after we studied a Bible passage that tells us not to worry…

The flowers of the field do not labor or spin. Yet God clothes them in splendor better than kings. How much more so will He dress you in beauty? What is the price of a sparrow? Pennies, right? And yet the heavenly Father never overlooks a single one. You are worth more than a million sparrows. So do not worry. He knows what you need. (Paraphrase of Matthew 6).

Her response: “So love God my heart sings.”

Is that why you sing, girl? Because of Love?

I want to believe like that and love like that and sing like that. So that it flows off my lips and fills my days and makes me faithful and blesses others and blesses God.