I Want You to Believe

Steve wrote this message through facilitated communication:

“I like both inclined floor and knee walking [Steve means doing both on the same day]. I believe I can crawl. I believe I can creep. I believe I can talk with Daddy.

“How do I feel my legs? Cold and hot helps me feel. I should do knee walking right after. After cold and hot, I can feel better for a short time.”

Next day, Steve wrote:

“I believe it is natural to feel angry about everything. I cannot walk or talk. I work hard in my life.

“I want you to believe in me.”

I asked Steve if he felt angry. Yes. I asked if he meant for Rumiko to believe in him. Yes. Mama? Yes. Daddy? Yes. Then I told him that we did believe in him, and so did the workers, and Grandma and Alissa and Karli and Huiru and George and many other people. Steve had been intent and serious up to this point, then he began to smile widely.



Steve doesn’t waste words. It is hard, doing facilitated communication. He tells us the essential things.

Rumiko is the woman at the Institutes in Philadelphia who guides his treatment. The inclined floor is like an indoor slide; with gravity’s help Steve can crawl on his belly down to the bottom. Now he can get half his body off on to the flat. In this photo, Steve is getting off as far as his knees, his best trip ever.

Creeping means supporting his weight on hands and knees. This is much harder than crawling because he’s raised his trunk off the floor. He does this with Mama’s support in the evening after the workers go home. Now, he feels confident to do this with me, but not so well as with Mama.

Knee walking happens with Steve in a harness, with elastic straps that suspend him from hooks that in turn hang him down from the ceiling. This device bears part of Steve’s weight. When Steve knee walks, the device coasts along a track attached to the ceiling. He can go about 10 feet, then turn around and go back. After five or six trips, he is tired.

I felt surprised that when Steve wrote, he did not write about his intelligence program – reading and math are going very well, he seems to enjoy them. Instead, he wrote about his physical program, that doesn’t seem to be progressing much at all. I understand it is very hard work for him, but he sees how important the physical work is.



Because he doesn’t have enough feeling in his feet or lower legs, we are now giving him alternate foot and lower legs baths, first in a bucket of hot water for 30 seconds, then cold water for 3 minutes, then hot, cold, then hot and cold again. Each session takes about 10 minutes, and we do four sessions a day.

Steve also likes tightening his gluteus maximus and he likes side-lying, pushing his knee down and straightening his leg. These sessions give him practice at telling the muscles what to do. He tends to use his flexor muscles but not his extensor muscles. He needs both.

He would like to do more than we are doing for regaining feeling and control for his lower body.

Preparing to Leave

It is early morning in Harbin. I like this time, and always get up before 6:30 to have quiet for writing before the workers arrive, Steve awakens, and the day fragments into a thousand tasks for his treatment program, one after another.

This morning, I savor each step in my routine: waking beside Steve – hearing his breathing exactly synchronized with the respiratory patterning machine (that is whole point of the machine, timed to match his rate of breathing and make him breathe more deeply) – check his covers, gather my things and slip out of the room.

Each time, each last morning in Harbin, I can’t believe the final day has come.

We have a lot to do today. If Steve finishes two chapters in biology, he will have completed the entire section on cell biology! I am sure he can finish his novel today, and he has a letter he is writing to his pen pal, and comments on his report back to the Institutes in Philadelphia that guide his treatment.

Yesterday, when I told him I was working on the report, I asked if he wanted to write something to his advocate Rumiko. Immediately he was intent, and declared a definite yes with his finger on the communication card.

When it came to writing, he seemed hesitant. He wanted to tell her what he liked about his program, and he had questions. Which first? He held his finger poised above the FC card.

He wrote to Rumiko:

“I like both inclined floor and knee walking [Steve means doing both on the same day]. I believe I can crawl. I believe I can creep. I believe I can talk with Daddy.

“How do I feel my legs? Cold and hot helps me feel. I should do knee walking right after. After cold and hot, I can feel better for a short time.”

I was surprised. His gains and enthusiasm these last weeks have been for the intellectual work, where he is doing splendidly (and happy for it!), and he loves going outside – whether to the mountain forest or just behind our apartment complex. His physical program, after all our hopes and energy from March at the Institutes, seems rutted back where it was.

But when I watched him FC to Rumiko, I saw what was front and center for Steve. He wants to move, he believes he can, he wants to work.


Most evenings, when I don’t forget, and while Steve is tired and past the hard efforts of writing or math or biology, he and I look at the quite heavy book I found for him in America, “A Year in Art, A Treasure a Day.” Every day has its art reproduction, while the opposite page has a quote and room for writing.

Steve likes so much diversity among the paintings, traditional and modern, landscapes and classic stories and even still life. Often I ask him what he likes best in a painting, and he points to the textured sky, with white and blues (he loves blue), or more recently to the heart, the turning point of the composition.

We talk about the art.

Two nights ago, looking at a landscape by a German artist I had never heard of, Steve could spot the tiny church spire in the far distance but pointed for his favorite spot to the base of two shadowed trees in the far left foreground, their dark trunks and dark shadows over the ground framing the scene otherwise full of light. He did not point to any objects – not the sheep or farm people, or the cart piled high with hay or two white horses ready to pull the cart. He pointed to the space where dark of trees and their shadows drew our eyes and turned our eyes back and deep into the bright landscape.

That evening, he wrote for the opposite page, “I like this painting.”

And last night, in writing to his pen pal, he said, “I look at art every night with Daddy. Art shows me the beauty of life and helps me see how other people feel. I am glad you do art.”

This painting is open before me now, and his words written on the opposite page in my messy handwriting, and this apartment with workers arriving and chattering before they open Steve’s bedroom door. I hear Steve now, he has lots of sounds during his first hour. I will be remembering these moments tonight on the train to Beijing, and happy with how often Steve surprises me.

Reading in May

Steve is supposed to read one book a day. He is a speed reader – much, much faster than me – but that objective is impossible. Especially of you pick 1,000-page books like the high school biology textbook that Steve read in six days. He got almost all the multiple choice questions right at the end of chapters, too.

Now we are reading a college biology textbook. That is a lot harder. We have agreed he will read each chapter twice, then take the quiz. He is still getting almost all answers right. I have to look the answers up, I have forgotten the chemistry and cell biology.

I pick a lot of stories for Steve to read, because he likes them, and because they offer one of the best ways for him to see other children and therefore himself, too. Of course, the lives of these children – like the Girl Named Disaster, who flees a horrible arranged marriage, when she is 11, and survives in the wilds of Mozambique for many months – is not really normal. But Steve’s life adventure is just as . . . uncertain and full of risks as for any of these fiction children. He is really the peer or fellow adventurer of Nhamo (the Girl Named Disaster), Lyra (the Golden Compass), Meg (Wrinkle in Time), Matt (the House of the Scorpion), and we have lots of books ahead!

Since I can’t read the books as I turn the pages for Steve (I can catch one sentence at most, if my eye strays on the page Steve is waiting too long), I try to read them ahead of time so we can talk about them. Plus I am picky about what he reads. If there is a disabled child, for example, who is embarrassed about it, I set that book aside. But if bad things happen, and nevertheless there is courage and hope, likely he will have the chance to read. . .

The Institutes has asked that Steve rate each book, and write comments. For his latest book, this week, here is the entry on Steve’s book list that we will submit to the Institutes:

* * *

Katherine Paterson

Bridge to Terabithia

163pp

Steve rated this book as a 1. [his best rating; brave children always seem to get a 1]

Steve’s comment: “I was surprised when Leslie died. I feel sad because Jesse lost a good friend. Jesse helped May Belle by building a bridge to Terabithia. I think Jesse will have new friends.”

* * *

While Steve wrote these comments via FC, he actually said, “I’m so sad.”

This book is the story of a beautiful friendship. Then without warning Leslie drowns. Steve is right, it is so sad. I hesitated with this one, but Jesse grows so much through his months adventuring with Leslie who is so creative and active and ready to change bad things around her (say, at school). And after Leslie dies, Jesse finds his sister in need. He rescues her and then builds her what feels to me like a beautiful bridge across the stream gorge to the magic woodland he shared with Leslie, Terabithia. Jesse will have good friendships, a good life, that friendship is not lost to him. A good book that Steve liked.

I love how succinct Steve made his comment – he got to the heart of the story.

After, I talked with him about life and hope. He knows he almost died after his injury and yet now his life is expanding – so many new things to read and experience. Just a year ago, he had almost no communication with anyone around him, a brilliant mind so alone inside. We were just learning facilitated communication (FC), and – at that time -- we felt so fortunate when he could spell out more than one word on his communication card. Now he writes 16-word sentences with good grammar, and paragraphs, and letters to friends.

He is so excited when I understand words that he actually speaks.

I know he speaks often, by FC he says he talks in English and in Chinese. For years after his injury, I had dreams that turned joyous when he would say a word, or a phrase. Now he is doing just that.

But his breathing is not so coordinated, he cannot control the movement of air through his throat so it is rare when he can say a word clearly, most often the sounds are mumbled together. For Mama and I, the trick is to listen always, to always be ready to catch the meaning.
One day recently, when I was upset, Steve asked, “How is Baba?” [baba is Chinese for Daddy].

New words regularly appear, and never return. His breathe, and the right moment, does not align.

Another time he said, very clearly, “bizarre.”

Where did he learn that?! I exclaimed.

My wife responded, You say it all the time!

Walking Out of the Forest

We took Steve outside of Harbin for the weekend.

Yesterday and tonight, he wrote to a friend:

"I liked going to the mountains. I saw many trees and a river with rocks. I walked on rocks by water and touched the river. I was afraid.

"I saw a bird nest in a tree trunk with nine eggs of the Chinese merganser.

"High trees are beautiful in the forest where Daddy was lost for two hours. I sat with Mama and looked for Daddy to come back from the trees. I understand the forest is big.

“Let me tell you how much I like the cabin in the forest where I stayed with Mama. I could see far in every direction. I could hear birds and rain.

“I wish I could take you there.”


Steve and Liying were waiting in a cabin at the end of the road, while I went with two Chinese and two other foreigners on a walk through a forest with Korean pine, spruce and other trees that have never been cut. I was usually at the end of our straggly group, looking at flowers and listening to winter wrens. Crawford was busy looking for pine nuts. He had to work very hard, because many old cones of Korean pine lay on the ground, but squirrels and other creatures had eaten almost all the nuts.

Our trail was very easy to follow, until we came to a big, wooden statue of the mountain god (a Daoist shrine). After that our trail climbed onto a boardwalk and went a short distance but suddenly shrank into a small trail. We followed that, and it got smaller and smaller until there was nothing. The trees and hills hid all the views, and there were no sounds but nuthatches piping and the rain.

It was strange, unexpected, to realize we were truly lost.

We had a very interesting two hours, and felt the old forest in a very different way. Many of these trees had stood here hundreds of years, their trunks and branches grew moss and lichens. What about us? What would it be like to sleep here? Or to really look for pine nuts, since we had nothing to eat?

All of us work in wetlands, we are so used to wide, open views. The trees crowded all round. Now and then as we walked, at a bigger tree or tall dead stub, or where tussocks of sedge grew in water, we wondered, have we been here before? Everything looked the same and different.

I told the others the story of Hansel and Gretel, how they left behind a trail of bread crumbs so they could find their way out. But birds ate all the bread. The two children, lost in the forest, were captured by a witch who lives in a candy house.

But at last we glimpsed a narrow metal tower, almost like another tree, and behind so many trees we could hardly see it. We followed that glimpse through bushes and thorns, and came onto a big trail. Soon we were walking out of the forest, back at the cabin at the road end.

We even had a hot although late lunch.

Those days, we joked around a lot. Because Mei Mei’s specialty was nature tourism, we decided we should use photos from our walk to make a brochure and attract more tourists to this place. That very strange photo below came after Crawford found three ticks crawling on his pants. It was not posed!

More about Steve

This photo was taken last month back in Wisconsin, when Steve read the entire high school biology textbook in six days. He also answered almost all the multiple choice questions correctly at the ends of chapters. The Institutes that guide his home treatment always pushes us to let Steve work with more advanced material, they think we underestimate him because he cannot talk (but he is only 12 years old!).

I was very surprised how well he did with high school biology. I was embarressed to tell the biology teacher from the high school (he lent us the book) how old Steve was.

The Institutes staff told us that Steve for these six months should specialize in one subject, for much of his reading. Steve chose biology. The staff told us also that Steve should choose something in biology for special attention. After reading the high school biology book, Steve chose cell biology, because "what happens in cells is so important to everything else." I was surprised and disappointed, because Liying and I know lots of biology, but hardly anything about cell biology (at least I don't).

So when I visited the high school biology teacher, not mentioning Steve's age, I asked him for recommendations for books about cell biology. I also got the name of a good college biology text (that weighed a ton, so much trouble to bring from America to China). This book is really tough. I am having Steve read each chapter twice. He has now finished the first five chapters, and got all but one multiple choice review question right. After that introductory section of the book was all done, today we read the first of the cell biology chapters. He really likes it, and got all these questions right too. I looked at the questions, but did not know answers.

The workers are very impressed, too. We all say chongming that means "smart" in Chinese. Steve smiles.

This is my favorite picture of Steve and me. It was taken around Christmas 2003 when Steve was almost 8. This was at a Christmas party, with live music, and Steve learned to whistle that night.

Steve and I work a lot with facilitated communication. Since he cannot hold the weight of his arm and hand well, I hold his wrist, and help him hold out his forefinger, and he spells words, by pointing to one letter at a time, on a card with all the alphabet plus punctuation and a few words like "yes" and "no" and "stop."

He likes writing, but gets a little impatient. Since I bought some books for him from Amazon, I received an email a few days ago, asking me to review the books I had bought for other readers at Amazon's website. Steve was happy to write a review of the novel he just finished (he likes stories about children a lot).

Here is his review. We are going to put it on Amazon tonight!

* * *

Book Review – A Girl Named Disaster by Nancy Farmer

Review by Steven Harris

Nhamo is a girl eleven years old. Nobody takes care of her because her mother and father are dead. Nhamo must leave her village because her family will make her marry a bad man with three wives. She must live alone with baboons. They are dangerous. Fortunately, Crocodile Guts tells her what to do. He is dead too, but she is using his boat.

I like how Nhamo dares to go away. I like her because she knows what do that is right. I believe people help her, spirits like Crocodile Guts who know what to do. It helps that she listens.

I like this book because Nhamo is brave and smart, I learned that you can get what you want in life. I can do what Nhamo did, but in my own life, in my own way.

* * *

I love finding out Steve's reactions to things. When I read this review, I think that if most children wrote it, that last sentence would seem strange, just imagination gone too far. Nhamo really has a horrid life, and when she runs away, she survives in the wilds of Mozambique for much of a year, despite a scorpion bite, a leopard hunting around Nhamo, bad white people who send their dogs at her, land mines planted at the border where she crosses into Zimbabwe . . . she is like an animal at the end. Yet Nhamo has a very strong spirit all through those months. And in her village at the start and after she gets to Zimbabwe and back with people, the wisest and most spiritual people are drawn to her, they help her.

She listens to the voices around her.

Steve's challenges, and his loneliness (for years, he could hear us but not communicate anything to us at all), are at least as daunting as anything Nhamo faced. At the end of the book, Nhamo has people who care for her, and she has come back from the wilds into a comfortable life. Her journey is done. Steve has so much of his journey, his hard times ahead. I love to see him brave and confident. He knows what he has to do!

When I lived alone on Outer Island for six weeks, by the end I heard voices too, and singing. Steve loves singing, and his hearing is much sharper than ours. Occasionally, his hearing is too much for him, and he gets upset. But mostly, he loves to listen. I wonder what he hears.