Susan's Blog

Sunday, January 3, 2010

A Bedtime Story

My usual place for revelations is as I’m falling asleep. A light goes on — and I don’t mean Ned‘s little book light, even though that definitely goes on every night. Last night I was talking to Ned about how I wished I’d played marbles with Nat yesterday, how great it was that he’d wanted to play both Thursday and Friday. And then Wednesday afternoon, we had done a puzzle together, come to think of it! But instead, yesterday, on Saturday, I was gone for a long time seeing a friend I hadn’t seen for weeks. I thought suddenly how Nat rarely asks for things, even things he desperately wants, like food. If he wanders into the kitchen at noon, and I look at him, he speeds away. If I say, “Nat is there something you want?” He replies, “No something you want!”

But he really does want to eat. As soon as I offer a concrete food choice, or simply take the food out, he’s back, wanting and waiting. It’s just that there is some kind of disconnect, some kind of block to his asking for what he wants/needs. I don’t know if it’s physiological, psychological, neurological, or illogical. It just happens, or actually, it doesn’t happen. He does not ask.

I was drifting off, teary-eyed about how poignant it was to see him gently and deftly picking up the tiny ball bearings and placing them onto the delicate black ramps. I remembered how I’d just gotten the box out excitedly and cried, “Nat! Let’s play with these! It’s a different marble game.” And how he’d come right over: “Yes.” Finding something he wants to do with me is always a real high for me.

But it had been the same for the puzzle. It wasn’t just the marble kind of toys. It was any toy.

“Oh my God,” I said to Ned, as he welcomed me over to his shoulder. “What if it’s that Nat really wants to play and do stuff with people, and he just can’t ask for it somehow?”
Ned thought for a moment and then said, “He probably does.”
I went on, “Maybe that’s why he seems glad to go back to The House. Because they have so many things going on, so many people who try to get him to do things.” It never occurred to me to understand why he was happy to go back every Sunday; all I ever thought about was the fact that he seemed okay going back.
Ned said, “I think he really likes it there. I think he really likes doing things with people.”
Now the tears were coming. “So we should be asking him to do stuff with us all the time, like the marbles. See how he jumps up to go on walks with you? Or to shovel snow?”
Ned replied, “I think he gets bored here.”

That is the truth. Or maybe it’s the truth. But what I know is he walks and walks and talks and talks around our house all day and people say so little to him. We all have become so used to the fact that he doesn’t interact with us.

But — just the way he wants to eat but doesn’t tell us, it is very likely that he wants to interact/play/do something outside but doesn’t say so. He can’t. So it is up to all of us to offer it to him, the way we would with food. Otherwise he might be very lonely here, very bored. I can’t bear that thought. Even though he’s used to it, even though he’s found ways to be content (walking and self-talking, lying on the couch, lying on my bed). It’s not good enough!!!!!!!!!!!

I felt myself plummeting into despair, realizing what I had not been doing, feeling sad for Nat who gets stuck by forces unseen. But then Ned said, “You can always start tomorrow.”
I laughed in relief, soothed by his common sense. He is right. You can just start doing better tomorrow. And I went to sleep, while he reached for his little book light and read.


Maybe Nat just has trouble answering questions. That can be really difficult. That's why, as you said, concrete choices in front of him are good. The "do you want to __?" and "what do you want to do?" are sometimes too open ended and difficult to understand, maybe Nat is protesting the answering of the questions, not so much the activity. When you showed Nat the new game and said "Let's play" your animation and excitement enticed him. Yes/no questions are hard, even when the person clearly shows that he or she can protest or affirm. We ask the kids so many questions, trying to elicit language and interest them. Showing interest and trying to engage without questions sometimes work. Keep on trying, you and Nat will get there:)

— added by miti on Sunday, January 3, 2010 at 11:14 am

"Coulda, Woulda, Shoulda"… I sometimes feel I should tatoo somewhere on me….

Over the last month we have joint attention with the little one. Not manding, not demanding but small talk his style. Not constantly but now and again… Yesterday he came up to us at the table

"My name is R". – R
"My name is Mommy" – Me. He laughed and walked over to the dh.

"My name is Daddy" – R
"My name is Russell" – Dh being silly.
R shakes his head realizing his mistake.
"My name is R".
"My name is Daddy" Dh…. He giggles and goes back to the living room.

Little things, to tell us what's on the tv. To inform us he's going to church today with Daddy and Grandma, to talk about b-day or Xmas things…. Small talk, very basic (2yr/3yr old style), but still small talk.

"Coulda, woulda, shoulda"… maybe it would have come quicker… Or not. I'm just floored it's come at all.

It's very, very hard to remember why would couldn't or didn't before, when life is so different now… As your dh says… tomorrow is another day… but that doesn't stop the guilt, does it?

— added by farmwifetwo on Sunday, January 3, 2010 at 11:20 am

I'm always sad when I 'get it' later than I should have. And usually I think "how could I have missed that?" I also sometimes get into the habit of not bothering Patrick because he seems quiet and content doing whatever he's doing. Kind of like not poking a sleeping bear. And that makes me feel guilty.

Sounds like you've found some games that you both can enjoy together. Have fun with that!

— added by mumkeepingsane on Sunday, January 3, 2010 at 3:55 pm

yes. all of you: thank you.

— added by Susan Senator on Sunday, January 3, 2010 at 4:05 pm

Ned is wise. You are wise too Susan. I love how you keep exploring who Nat is and how you can help him be himself. You are always trying to know him better. I admire that in you dear cyber-friend :0)

— added by Penny on Sunday, January 3, 2010 at 6:53 pm

This post really resonated with me, Susan. My little guy is 5 and loves to do activities with adults. But he never asks or suggests either.

Thanks for your blog. I always feel better after reading it.

— added by Katie Shinden on Friday, January 8, 2010 at 12:35 am