My Wishes Come True

This entry was written by Steve.











Before going to camp, I wrote, “I hope I like summer camp and Huiru. I want to have friends.”


I went to summer camp with Daddy and Mama. I liked seeing my penpal Huiru and the other children.

I met Huiru and saw her cat and her grandmother’s home. I liked Huiru. I like she talked with me. I told Daddy to let her know she can talk with me in Chinese.

I liked holding Huiru’s hand. I am very happy I met her. I miss her.

I liked meeting new people and telling them things by FC. I told the students, “I like to see how you are painting. I like how you work together to make art. I want to give this book about art of Monet.” The students had trouble speaking English but they could understand my FC.

They made a long mural about cranes and nature. Huiru painted her cat in the mural for me. The students finished the mural and had a party in my hotel room. I like Huiru gave me cake and put frosting on my face.

I made art on the computer with Val. I want to do more art.

I liked where we had summer camp. I went to the lake. I liked the wind and the mountains.

I rode the horse. I felt close to the fur and muscle, and I made my body move with the horse.

Some of the children were Mongolian and could not speak English or Chinese. I learned some Mongolian words, like “good” and “eat” and “fire” and “dance.”

At night, we had a bonfire and dancing. I danced with Daddy and friends.

I learned that I can meet new people and make friends. I can meet both new and old people and have fun. I now know that people can help each other learn to do new things.

Steve and Dad do facilitated communication (FC). Steve points to letters one by one on his communication card, to spell out what he wants to tell the students, who are working on their mural. Fourteen students worked together for days to complete their mural, missing most of the fun and action other students had during summer camp.

Steve meets Huiru's cat. Steve sees very well out of the corners of his eyes. He pays attention to many things even when he doesn't seem to be looking.

Steve visits Huiru in her grandmother's home. We are sitting on the family's kang, the traditional bed in northeast China that is heated by hot air from the stove that flows under and through the bed before going outside.

Steve and Liying also visit the captive red-crowned cranes at Xianghai Nature Reserve. The cranes are released to fly freely over the marsh, but one bird comes too close! Liying worked with cranes for many years. She knows what to do.

When the students finish their mural, they have a party with special cake to celebrate in our hotel room. Someone has the idea about frosting on faces!

Steve is a little subdued with all the crowd, but frosting is fun!

The students proudly present their mural to the entire summer camp.

Huiru painted a cat into the mural for Steve.

Steve had a great time.

See the previous entry for more photos from summer camp.

Photos from Summer Camp

Almost all the children at the Keerqin Summer Camp were Mongolian. The talking was in Mongolian and Chinese. For me and the American teachers, they had interpretors who helped with English. Tomorrow, I will have to ask Steve if he learned any Mongolian words. He is very quick with language.

Steve wrote, "I danced with Daddy and friends!"

"I liked where we had summer camp"

"Swimming made me laugh."

"I made art on the computer with Val."

"I want to do more art."

"I rode the horse. I felt close to the fur and muscle, and I made my body move with the horse."

"I went to the lake. I liked the wind and the mountains. "

Admiring the Space for Steve

July 20, 2008

Liying has been away all day, every day, working on the new apartment. Last night, we planned that she would take Steve and me there (Steve has never been inside, and me, just once). But Liying was too tired.

So tonight we took the taxi. . . loading by the street curb, always we hurry, the taxi half in the street, me sliding into the back seat with Steve long and heavy upon my body. I feel that we in combination are like a big turtle climbing into narrow space, but we’re upside down, then I shift him – he’s always happy at the adventure of going somewhere, even upside down – despite our tangled feet into an upright position so he can see out the windows. Meanwhile Liying wrestles with the wheel chair, explaining and stowing it with the driver into the trunk.

It’s a lovely July evening, so all the street restaurants were full of people, to both sides before the gate to our apartment compound. To my surprise, hardly had we managed to get ourselves and Steve unslid out the taxi door and the wheel chair unstowed, but two security guards with huge smiles were opening wide the car gates for Steve, for all of us. A special entry.

Everything looked surprising clear and real to my eye this time, more vivid than memory of that other visit a month ago. People were out in numbers in the courtyard, because it was evening, time to be free on a Sunday. The pavement isn’t too bad, but it’s worn, with little flaws I hadn’t noticed before.

We left the wheel chair just inside our doorway at ground level. I found it easy on those stairs to get Steve up to our second-floor door. He was chanting loudly, excited by the new home and by my hoisting him up and up the stairs.

When we opened the heavy outer door, and then the thin wood door, Liying delightedly showed us the first and only thing in sight – the new entry cupboard, mostly her idea and design. People will put their coats and shoes here, the cupboard blocks all view into the big room. At the last minute, she added a mirror so Steve and I looked at ourselves, at how tall and upright he is, far up my chest.

We had left the FC card downstairs with the wheel chair, but Steve looked so interested and happy at everything Liying showed us. She is getting to know the apartment well indeed, working so hard on installing heaters, and checking window seals, adding electrical outlets, a new light in the bathroom and by the entry, a new shelf by the bathroom sink, shelves in the kitchen cupboards and the wardrobes built into what will be our bedroom.

She pointed to the little holes drilled for the tube for Steve’s compresser. She is organized and thinking so much through.

One of the heaters will go on the main balcony off the front room, the big room that will be Steve’s work space – Steve is happy the central, spacious place is for him. His stander (what the Institutes call the Virtual Kinesthetic Environment, or VKE) will be on the balcony year round – there is double glass floor to ceiling windows on the balcony.

From the VKE to be installed soon, from the balcony, we have a wide view of the main interior courtyard for all these apartments. It’s an urban space, concrete for playing games, three sides of a square outlined by shallow steps and lines of bushes, tables for majong, and benches and what look like playground equipment for little kids except I saw adults using them . . . to keep fit, I guess.

It’s all so different still to me, from Baraboo, yet so much friendlier than the moonscape between the apartments where we used to live. Liying joked, as the guards opened the car gates again for us to leave, that we’ll have all these restaurants close by where we can eat every night. Somehow I doubt we’ll ever eat there. Maybe I would if I were all alone, or just with Steve, but how could we order food?

I guess I should be getting ready. The workers can teach me enough words.


The next day, Steve wrote about our visit, “I just want to move soon! I like that we will have our own home and can do what we want. I like how big my work room is. I can look out the window and see Mama come.”

Black and White Ball

July 20, 2008

After more than three years, coming down the inclined floor isn’t easily exciting. Steve has two such slanted floors, one in Baraboo and one in Harbin. Most people would call them slides. The idea is that, by controlling the angle so that almost any movement propels Steve forward and downward, gravity makes crawling easy to learn.

Eighteen months ago, Steve was supposed to get half his body off the end of the slide onto the level floor – that’s where the Institutes get the child to work hard without knowing it. The farther the child goes onto the flat, the closer he or she is to crawling on a regular floor. Eventually, the little ones leave the inclined floor behind entirely.

Last fall, Steve was supposed to get ¾ of his body off the slide onto the flat, to his knees. Occasionally he did, and his best effort ever – beyond his knees – secured him prolonged applause from the workers and me, and a long rest (with all his body off to just past his knees, but he went no farther) while I took photos.

But this summer, he seems to have lost any ability to get more than half his body off – to his waist again. This he can do any time almost, and maybe half his butt the last day or two. It is true that he can veer right and slide his entire body off sideways, or all but the corner of the upper hip. But sideways isn’t the way toward crawling.

Whenever I go away to America, he regresses on the slide. But this time, on my return he was really a stick in the mud. The slide was slightly higher than normal, because of the limited space in our small temporary apartment. That should have made things easier, but it didn’t. He didn’t move much. I think part of the problem is that his left wrist is very tight again (not his fingers, though), so he can’t get his two arms under his chest to push ahead.

Now I’ve got him working hard again. He does seem to use his hips and legs more to waggle down, hardly a crawl, however. We alternate going down the slide with short periods of holding in four-point position on a nearby mat -- motionless, he supports his weight on his hands and knees. We help with balance at his hips, and hold his hands flat on the floor. It is really tiring. Luckily he loves music, and the keyboard is waiting. We reward him at the bottom of the slide, the music rushes us into 4-point, he gleefully waggles his knees and legs as we set him down on the mat.

He was getting too tired, slide then four-point repeated again and again, so I started alternating playing “catch” with a black and white ball – half the time, he goes to four-point after slide, half the time plays with the ball.

It is just like a volleyball, but not quite so big. And by now, not so full of air. It’s a little soft to his touch. I notice with the ball, how active his fingers have become, even his left fingers move over the surface of the ball. He feels that surface so well, and this week (not before) he can move the ball around with one or both hands. He can’t pick it up himself, but once he has it, he has its feel, he is ball handling.

Playing catch with Steve has long meant that I hold each hand with one of my hands, and thus catch the ball or throw the ball, or bat the ball with his hands.

Now, I am letting go of his hands before the ball arrives. He usually catches it against his body, or traps it against his lap. A few times, he has caught with his fingers in mid air.

That really makes him happy. All of us happy!

He loves playing with the black and white ball now.

The best times, we have three workers playing with us, and Steve and I choose trickily which one we throw the ball to.

I sit right behind him on the couch. Looking over Steve’s shoulder, it is wonderful to see his long fingers, sensitive and pressing, controlling the black and white ball. He is a twelve year old boy.

Downstairs, outside the apartment tower, we often see another twelve-year, practicing, practicing, his hands all round a basketball.

Looking at Monet

Steve likes all sorts of books.

Novels.

Nature. Even cell biology.

He also loves looking at art and reading about artists. I brought him a book of Monet's landscapes, together with photos of the same places so he could see how artist and photographer can have such different eyes (I suppose the book assumed that the photographs were mere records of the actual landscape, as a comparison for what Monet created).

The book had lots of text, that I missed because Steve reads so fast -- I just looked at the images. But I glimpsed some of Monet's letters home to Alice. I think Steve will remember how hard it was for this splendid artist -- how hard the art was, how often he got discouraged, how much he had to work and struggle to get his vision onto the paintings. It is good for Steve to understand how often even regular life can take a lot of heart.

Here is what Steve wrote: “I like how Monet saw the world and made art for everyone to understand light and color. I wish to see his art directly. I want to know how he made his art.”

Often when we look at art, Steve will point to the sky as his favorite part of the painting -- he loves the light and color. This time, we watched the water surfaces with Monet.

Forgive and Dare

July 4, 2008

Steve is reading a lot of books. This time from America I carried 17. One of them is huge, a heavy book of Degas. Steve loves art books. I thought Liying might complain, how impractical this was to haul to China, but she didn’t. Steve doesn’t know about it yet, nor has he seen the Monet book, that I bought so he could see two different views from the same time and the same France. I am bringing the books out for him little by little this summer.

For novels, I get him books about kids his age, I think he learns from them about being 12, since he almost never sees anyone else up close but adults. This time, back in Madison, I went to the shelf with Newberry Medal winners – some of them so old, my Mom read them when she was little (Dr. Doolittle), and one I remember Mrs. Himmelfarb read to us after lunch in sixth grade.

Right now Steve is reading Out of Dust by Karen Hesse. I like to read the books, too, so I can talk about them with him; but Steve’s such a fast reader that I must do it ahead of time. I read Out of Dust on the way over on the airplane.

This writer is bold and different, she wrote the novel all in free verse. It takes place in America’s dust bowl years, a bleak, terrible time to be a Kansas farmer. Worse, Billie Jo’s father (so tired from working all the days in all that dust, for almost nothing) set a bucket of kerosene by the stove, and Ma tried to make coffee with it. As flames shot up, she ran out to get help from her husband. Billie Jo remembered to grab the bucket and toss the kerosene out the door, she was desperate . . . the kerosene flew all over Ma who burst into flame.

Ma later died, days or weeks later, and so did the baby inside her. Billie Jo’s hands were ruined by the fire, those moments when she tried to stop the flames on her mother.

Actually, this book has a lot of hope and humor.

Yesterday, we got to the place where finally Billie Jo runs away on the train, like so many people in those times. But she comes back. When her father meets her train, they talk like they never have:

Met

My father is waiting at the station
and I call him
Daddy
for the first time
since Ma died,
and we walk home,
together,
talking.
I tell him about getting out of the dust
and how I can’t get out of something
that’s inside me.
I tell him he is like the sod,
and I am like the wheat,
and I can’t grow everywhere,
but I can grow here,
with a little rain,
with a little care,
with a little luck.
And I tell him how scared I am about those spots on
his skin
and I see he’s scared too.
“I can’t be my own mother,” I tell him,
“and I can’t be my own father
and if you’re both going to leave me,
well,
what am I supposed to do?”
And when I tell Daddy so,
he promises to call Doc Rice.

He says the pond is done.
We can swim in it once it fills,
and he’ll stock it with fish too,
catfish, that I can go out and
catch of an evening
and fry up.
He says I can even plant flowers,
if I want.

As we walk together,
side by side,
in the swell of dust,
I am forgiving him, step by step
For the pail of kerosene.
As we walk together,
side by side,
in the sole-deep dust,
I am forgiving myself
for all the rest.


I asked Steve if he needed to forgive anyone. We were outside, it was evening and we were sitting on the short wall by the flower bed outside the apartments.

He answered, “I need to forgive myself because I cannot do what other children do. How can I? I care about other people, I hope they care about me. Can I dare to become friends with others?”

Written like this, Steve’s thoughts seem so quick, but when we’re sitting together, doing facilitated communication, he often pauses, he often leans his face to mine as if for reassurance. He knows his thoughts, but he’s hesitant to express them.

July 7

We finished Out of the Dust last night. Steve gave the book his top rating (1), and wrote these comments:

“This story tells about Billie Jo in the Dust Bowl. She had an accident, and was burned. Her mother and brother died by fire. Billie Joe could not play the piano. Piano was Billie Jo’s favorite thing to do in life. She found how much her father loves her. She learned her father can take care of her. Billie Jo will be happy again.”



I asked Steve his favorite thing today. He wrote, “Adding numbers in my head.”


July 8, 2008

I asked Steve his favorite thing again today, when we went outside and sat on a real bench. He wrote, “Making words with FC.”


July 9, 2008

Tonight, Steve learned he will go to summer camp at Xianghai. He is very happy.

But then he wrote that his favorite thing today was, "doing good four point.” [that means on his hands and knees; he works very hard at this, and held himself up on all fours for 20 seconds today].

A Great Day

July 3, 2008

Today was a good day for Steve.

I should write the list down since it is so long!

Steve did great crawling on the inclined floor, coming all the way down from the top, and usually half his body off the bottom.

Steve did great on four-point (on holding himself up on hands and knees) right after about 15 trips down the inclined floor. He held himself up a long time. Even near the end of the day, when he was getting tired from so much work, he wanted to do four point.

He read another chapter in biology, and got all the quiz questions right after just one reading. Steve has only three chapters left to finish to entire college biology book. He is proud of this – he should be!

Steve did great on math. I let him use a simple number card for his answer (rather than the graphing calculator, which he is learning to use, but the keys are so small it is hard for him to get the right ones). He obviously knows how to do the problems and can do them in his head much better than me! He was so quick.

Steve finished a great letter to Karli. I sent it to her tonight.

Steve said “no” several times today, he is saying it a lot and I am understanding him. He is making a lot of other “talking” sounds.

Steve sat up great on the patterning table, he held his trunk up for along time, quite upright and happy about it.

Steve picked up the black and white ball with his right hand, then held it with both hands and moved it around. He has never handled the ball so well, and he started all on his own. I have noticed he can pick up or hold things better now.

He did kai dong and bee dong (turning the light in the bedroom on, then off) all by himself!). I stood him next to the wall switch, and asked him kai dong. He moved his hand so well, we did it more. At first, I helped him get his arm up, but then later he moved arm and hand entirely by himself several times, both turning lights on (harder) and off.



Steve often does wonderful things with his mind. Today, I am most excited by how he used his hands!

I Wish

I am back in Harbin. Since I am with Steve again, we can write new things for the blog.

June 29, 2008

During the move into the hotel apartment, all of Steve’s communication cards were packed away (we don’t know where they are) except for his smallest one. When I got back from Russia, that one too was missing.

So I made him one. Although the letters are not lined up exactly as in his regular card, I have been impressed with how well and quickly Steve can do facilitated communication – it seems to be a real change since early May. I have also noticed that he is more adept with his right hand, this may be the reason for the improved FC.

This evening, I asked Steve if he would like to write.

Yes.

Then I asked if he would like to write for his blog, or a letter to Jie or to whom?. He wanted to write for his blog.

“I wish I could talk more and get my thoughts out to Daddy. I wish I could have told Daddy how much I liked Karli’s letter today.”

“I like talking because I can let people know how I feel. I like going with Daddy and Mama outside where the wind touches my face.”

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.

Getting Started

Betsy suggested that Steve and I create a blog about Steve, with news and thoughts and feelings. Steve thought this was a good idea.

I wrote back to Betsy and confessed that I had heard of blogs, but had no idea what to do. Betsy sent me to http://www.blogger.com/. What this website says is true, it took just five minutes to get started!

Steve agreed that I would get it started (he's in bed now, and supposedly going to sleep, but I hear him laughing as usual). He loves after bedtime because he can just be free and happy -- no work. He works all the time, trying to recover -- or grow -- out of his brain injury. Eventually I will go in and check him, to make sure he hasn't kicked the covers off, and to straighten him up in the breathing machine where he sleeps at night. He can breathe okay by himself, but he has such shallow breath his words are very hard to understand (we're just learning). Not walking, or even crawling, he's never exercised his lungs so the machine tightens a vest around his chest, making him exhale deeply.

We just finished reading a book A Wrinkle in Time that his older sister Alissa sent with me when I came back from America to China where Steve lives with his mother and me too, half time(the other half time is mostly America, and sometimes Africa or elsewhere). Alissa lives near San Diego. This is what she wrote for Steve on the front page,

"Dear Steve,

This is one of my all time favorite stories -- I have read it many times! I hope you enjoy it as much as I do.

Love,

Alissa

April 4, 2008"

Steve rated the book a 1 (his top rating). Usually he writes comments after finishing a book, but this time he wrote a letter to his sister, that I should sent her by email. Here is his letter:


"Dear Alissa,

I like this book because the children tesser from Earth to other planets. Meg is impatient and angry because her Dad cannot save Charles Wallace. Calvin says he cannot save Charles Wallace because he doesn't know him. Meg must save Charles Wallace.

Meg is afraid but she goes anyway.

Love defeats IT.

Our Dad hopes he can do everything to help us be what we want, but he cannot. We have to do the hard things.

I know I can be like Meg.

I am so happy that Meg saved Charles Wallace.

I hope to see you more.

XO

Steve"

Here is a photo of Steve and me.