Susan's Blog

Monday, September 9, 2013

Necessity is why this mother invents

I found myself almost going back in time today as I thought about Nat and reading. I want him to read more. I have wanted that for ages. Reading was in his IEP year after year. He knows how to read, has known since he was about 7 or 8. He has progressed to a first- or second-grade level, and there he has stayed. I don’t care, I don’t mind, who cares what grade he’s at as long as he’s reading. But I don’t think he is. I do hear from the house staff that Nat does choose to read when he has down time. I don’t really see that here, but I have to admit that we don’t often think of offering it to Nat as something to do. Usually, if I do see him looking at something on the living room coffee table, it is a flyer from his social group. He doesn’t seem all that interested in his childhood books — or the childhood videos, for that matter. When we do ask to read with him, he can read, probably at a first or second grade level. I believe he understands the content when written on that level as well.

When Nat was a baby, the first shared activity we had with him was reading. That day, that beautiful, heartstopping day, when he reached out for Corduroy’s Day: A Counting Book, took it from my hands, closed it, and handed it back to me, saying “uh uh uh,” and I knew that some things were going to be okay with this unusual baby of mine. There was something we did like to do together; there was something he could make me understand.

Back then Nat showed his joy in small slips of smiles here and there, unexpectedly wide bright flashes of light from his face. That’s what he does now. But I want more. I want to see him engaged like he used to be, in something that he likes, but that will also stretch him, lead him out of his own mind. As fascinating as he finds his own world, I think it would be good for him to engage more in the wider one out here.  Aside from interacting directly with people, or indirectly on Facebook or email, there is one very clear way that Nat could enjoy engaging with the world: through books.

But as I once said prior to Thanksgiving of 1992, “There are no good books out there,” for someone like Nat. Back then I meant someone who needed things explained, step-by-step, beginning, middle, and end. He needed Thanksgiving to be explained, not in terms of Native Americans and gratitude, but in terms of what the heck happens to him on Thanksgiving Day. I created the “Nat Books,” or “Crisis Stories,” which did just that. These were a kind of social story, but I feel I invented them (mine, I mean), because I did this before Nat was even diagnosed, let alone before I’d even heard of Carol Gray’s ingenious invention. Necessity is the mother of invention? Necessity is why this mother invents.

This morning I was Googling books for adults that were written on a first-grade level. My mother is a librarian and she told me such books exist. I could only find one company producing them, and frankly they looked like cheesy boring crap. And suddenly I found myself saying, “Why can’t there be books about adult things, but that Nat could read and comprehend? Why must he be stuck in the world of princesses and pirates? Talking mice, flying carpets? He’s a grown man. He must wonder about other things. Why aren’t there books about things that Nat cares about, like — like — like — ?”   Like what? What does Nat like?

Nat likes calendars, his social group outings, Cape Cod, and his brothers. He types “Max Ben” whenever you ask what he wants to talk about. He asks to talk about the calendar when he wants to talk about anything. He grabs the social group flyers from the coffee table. He loves going to Cape Cod.

So today I started writing a simple chapter book, and the first chapter is Max and Nat move out. Ned is going to find the right on-demand publishing software — probably Lulu — and together we are going to make cheap, bound, real books for Nat that tell him what he wants to know — and perhaps even more.




— added by Niksmom on Monday, September 9, 2013 at 8:59 pm

Thank you, honey!

— added by Susan Senator on Monday, September 9, 2013 at 9:01 pm

I do, too. It’s the perfect solution. Bravo again, Susan.

— added by Shelly Senator on Monday, September 9, 2013 at 9:48 pm

Love this… I’ve also wondered about picture books geared toward older kids or adults. My boys are emergent readers but they love picture books.

— added by Suzette on Tuesday, September 10, 2013 at 12:33 am

This us an amazing idea! Which I am n

— added by Susan on Tuesday, September 10, 2013 at 5:48 am

….now going to steal!

— added by Susan on Tuesday, September 10, 2013 at 5:49 am

Ha ha, go for it! Let’s make this world what it needs to be!

— added by Susan Senator on Tuesday, September 10, 2013 at 5:54 am

Coffee table books.

Lots of pictures, maps, few words.

Get them from the library and see which one’s interest him the most.

A place to start. We have a drawer full of maps and map books. My youngest loves them.

— added by farmwifetwo on Tuesday, September 10, 2013 at 8:28 am

Yes, true. But I’ve tried coffee table books and what I want for him is to read, rather than be distracted by pictures.

— added by Susan Senator on Tuesday, September 10, 2013 at 10:57 am

Great idea. I am going on vacation for a week in October without my daughter. I verbally prepare her, but there are almost always negative behaviors when I am away, and sometimes for several weeks after I come back. A book is something concrete to hold, she loves pictures and staff could read it to her when I am away.

— added by row on Tuesday, September 10, 2013 at 12:57 pm

Susan- you are always right on what is needed. We paired words with pictures and symbols as a way to build sight words right from the start on things pertinent to my son’s interest and expanded to stories as a way to prepare him for situations- the pool a visit to MacDonald’s , his interests etc.. Input like this throughout his life must have benefitted because my (18) year does now read at essentially the level as Nat.
We found interesting more age appropriate material to expand to things like sports, music etc on the Tar Heel readers website. They can be customized and read on the computer or printed and put in slip sheets in a notebooks. I have been in touch with Adult literacy projects and envision that avenue as a way to continue to build these skills in as a meaningful way into adulthood.

— added by Paula on Wednesday, September 11, 2013 at 4:19 am

Wonderful idea, Nat will love them! A friend of mine had great success with Lulu, and I loved going through CreateSpace. Can’t wait to hear how it goes!

— added by kim mccafferty on Wednesday, September 11, 2013 at 10:37 am

I read this post a few days ago and I’ve been thinking about it since. I have recently gotten my son a subscription to the National Library of Congress audio books program. It is free for people with disabilities. If you aren’t familiar with it I highly, highly recommend that you look into it for your son. He can get a wide range of books at all levels and he can listen to them rather than read them. It has made a world of difference for my son. And, in fact, we all listen to some books together and then end up talking about them at dinner or in the car or whatever. Until recently I thought my non-verbal son had a much, much lower level of understanding of concepts and ideas than he actually does. He was never much interested in books and still isn’t. If asked to choose something he will pick an early reader favorite but the reasons for this turned out to be so very very different than what I assumed. His choices reflected his challenges but not his desire for what he really might have liked to read.

— added by Christ on Sunday, October 13, 2013 at 7:40 pm

I don’t know why my name appears to be Christ in that last comment! Somehow the last 3 letters got deleted!

— added by Christine on Sunday, October 13, 2013 at 7:41 pm

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