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:
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!
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