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.”
Tuesday, July 22, 2008
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.
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.
Sunday, July 13, 2008
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.
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.
Wednesday, July 9, 2008
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].
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].
Saturday, July 5, 2008
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!
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.”
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