I sometimes wonder -- and worry -- about how I represent Oliver in this blog. Oliver has autism and
that fact is a central part of who he is. But when I relate to Oliver, when I parent him, and when I write about him, I hope I emphasize his humanity above his autism. So sometimes I wonder if someone reading this blog would recognize Oliver upon meeting him. Would they be surprised by how very much autism affects our boy and us, his family? Or would they be surprised by, well, how normal we are? Because both are certainly true.
For example, I wonder if it would surprise someone to know that occupying and monitoring Oliver is a full-time job. The iPad has been a tremendous, wonderful gift to our family because it is something that engages our boy and so I can give it to him for a half hour and know that I can read the paper or make a cup of coffee. But there are very few other activities that engage Oliver in the same way. So a lot of my time is spent doing things with the boy. There is a lot of good in this, of course, but sometimes, what I wouldn't give for him to have the ability to get completely lost in a book or a movie. So that's part of the context behind the conversation I'm about to relate. The other part is simply that I'd like to understand better how high the hurdle is before us.
Here's the conversation:
Me: Oliver, I would love it if you could sit and read a book every now and then.
Oliver: I can read.
Me: I know you can read and I'm so proud of you, Oliver. I just think you would enjoy reading stories to yourself. Do you think you might like to do that?
Oliver: No.
Me: Why not?
Oliver: Because it is too hard.
Me: Do you think it is easier when I read the stories to you?
Oliver: Yes
Me: What if I got you recordings of books? That way you could listen to the stories.
Oliver: OK.
Me: Do you like to listen to the recording of poems that I've been playing?
Oliver: Yes.
Me: Do you have a favorite?
Oliver: Yes. I like the one about the woods.
Me: I'm not sure I know which one you mean. Do you know the author?
Oliver. Yes. Robert Frost.
Me: Oliver, do you think you could try to tell me again why reading a book is so hard? It seems like it is easy for you when I ask you to read a page or two. You can read about 10 times faster than I do!!! I'd love to understand why a book seems so hard.
Oliver: Because I have to make pictures and then read them. It's too hard when there is a whole book.
Me: Do you keep those pictures in your head or do you forget them.
Oliver: I forget them.
Me: But you told me this morning all about matter and we looked at those pages weeks ago.
Oliver: Because those pictures are still in my brain.
I've had some version of this conversation with Oliver at least three times. It seems that he somehow captures an image of the page first and then decodes it? I'm not quite sure I understand. What is clear, I think, is that he is reading the whole rather than the parts. And when I say "clear," I mean that I can barely conceptualize how this works for him.
Thoughts? Ideas? Anyone?
I cannot interpret this but I am struck by your efforts to understand and help Oliver explain himself. You are a scientist/analyst in the lab all day and all night.
ReplyDeleteTo a lesser degree we face this with Henry: when he starts all his angry/negative talk it is such a challenge to try to understand what is happening and why, to try to help him understand why he feels this way and how to conquer it, but also not put words in his mouth. I will say "are you feeling anxious because we are doing something that we've never done before?" (Canoing this weekend). Then he will parrot it back: "I'm feeling anxious because we're doing something new." But is that REALLY how he's feeling and why????
I am so impressed with Oliver's ability to express himself and how his mind works. I think you will get there. Keep working on it.
This is really interesting, and you do such a good job of helping Oliver share how he thinks. I wonder if any of Temple Grandin's books or talks would help shed some light on this? She does a good job of interpreting the way she thinks in pictures for us more left-brained neurotypical-ish folk. :-)
ReplyDeleteI see I've missed much here -- so many exciting things! I wonder if it's easier for Oliver if you read TO him so he's only exercising one skill at a time instead of both: reading + interpreting. Sounds like it's easier for him to listen and then immediately interpret (or make the picture in his mind). Fascinating that he is making pictures in his mind. That being said, I know my Sam finds it easier to retain non-fiction because it interests him far more than fiction. Is he similar?
ReplyDeleteJust found your blog, and I want to thank you. I'm the mother of two children with autism, age 7 and 5. They are verbal, but not yet conversational. The other day my son was playing with cards with pictures on one side and sentences on the other. He had never seen them before. He flipped a card over to the sentence side for a fraction of a second and then said the whole sentence. He is obviously not reading word by word, but seeing the whole and then reading it. I wonder if this is like your son? It would be hard to hold a whole written page in your mind's eye...
ReplyDeleteDeborah, thanks for reading and commenting! Yes, I think that is precisely what they are doing. And yes, I think this is a huge hurdle for them. And also amazing and incredible!!
ReplyDelete