Susan's Blog

Saturday, August 2, 2014

How Does He Know?

Life is not a bowl of cherries, but you might be able to get a lot out of a bowl of strawberries. I’m sure you don’t know what I mean, but you will.

I am a writer, a word person, and an idea person, so I am obsessed with the way people say things and know things. Also, I am a mother deeply connected to my sons; put it all together and I am fascinated with what they know and how they express it. They are all three young men by now and so I have the added challenge of trying to figure out what’s going on with them while not seeing them all the time.

Most of the time I write about Nat, because it feels like Max and Ben, who are typically developing, are much more in need of boundaries and privacy.  Nat, who has intense autism, inhabits a different kind of territory, and appears not to be aware of what I am writing about him. I may be dead wrong about this stuff, however. Sometimes I explain to him about a book I’ve written or a television or radio program I’ve been on because of him, but I am not sure how to talk about with him in a meaningful way to him. I say stuff like, “Mommy is talking on the radio about you, Nat, because you have autism and you’ve learned so many great things so other people with autism want to hear about it. Like how you talk sometimes, and how you do Facebook, and how well you ride your bike. Or how you work at Shaws. A lot of people with autism can’t do that. So people want to hear about you. It’s because you do a good job,” I say, rounding it out, distilling the message in case I’ve said too much.

The questions I often ask are what does Nat know, what does he understand of the things going on around him? But today I was thinking, “Why now, and not then?” By this I mean, why is he showing understanding of that right now, but not all those other times? What happens in his mind that makes these circuits switch on? The people that believe in Applied Behavioral Analysis — and I believe in pieces of it, which in itself might nullify ABA which is an entire system, a stack of concepts and trials layered intricately one upon the other, built in a particular order so that if you work on only this part or that, you end up pulling out blocks as if in a big Jenga tower — the ABA-ists would say that Nat knows because of the repetition over the years. But I am not so sure. I of the Rube Goldberg-type junkyard mind, like to pick from this and that, the scrap heaps of ideas and creations, and find pretty things I can use in some way or another.

My mind works in great loops, with trains of thought broken, derailed, and then reuniting at the very end of the line. So how does Nat’s mind work? In the distant past I have imagined a radio with static, an impossible place filled with distracting noise, where you try to listen to the song but you just know it’s going to get knocked out again in the next moment. So you not only have a fractured song, you also have the tension of waiting for the interruption.

Lately I’ve been seeing Nat’s mind as being more like mine, maybe the way mine works in therapy. I’ve been in therapy for a very long time, on and off, mostly on, and the way it works for me is I keep learning the same things over and over, but each time deeper and clearer. So I wonder if it’s that way for Nat, where rather than a staticky radio — which implies just kind of a jumble of stuff in his head — it’s more like spiraling tunnels through the earth, mines and mine shafts that collapse sometimes. But each time he comes back up to the surface, he knows more.

I was thinking of this today that led me to consider Nat’s learning process. This morning, I gave him a bowl of strawberries. When he was younger I sprinkled sugar over them because — why not? But later, I kind of stopped because if he could eat them without sugar, then why not? And he never asked for sugar unless I offered it, and well, I just kind of stopped offering it, figuring it was probably better without all that sugar.

So he was eating the strawberries and looking up at me ever few seconds. But I was busy with something so I ignored him. I didn’t mean to. Then suddenly he got up from his chair and stood in front of me at the counter. He bent towards the sugar bowl but then stood up straight again, looking at me. “What, Nat?” I asked, really not knowing what.

“Sugar, want sugar please!” (I think he said please.)

“Oh, wow, Nat, that’s great that you told me! Wow, great!” I said, dumping a pile of sugar on his strawberries.

So why now and not all these other years? What does he suddenly know, that he asked for something like that?

I sure as hell don’t know.


Sue, I see a similar pattern with Terry. I think of it as being like Russian roulette. When the trigger is on the right chamber, information moves in and out freely.

— added by Cathy Boyle on Saturday, August 2, 2014 at 8:21 pm

I often wonder this about M., too. I was thinking today about his mind, his thought processes, and how much he really knows and how I perceive him. His speech patterns are that of a young toddler, but as we know, that means nothing. He could have so much more going on in his head than we think or will ever know. I can’t think about it too much or I get kind of queasy.

— added by ASDmomNC on Saturday, August 2, 2014 at 9:33 pm

I try not to get too expectant of consistency when this happens with J, but I sure as Hell get a leap in my heart of pure joy. The reason being is that I know he can do it, and that means the world to me! If he does it once, it may happen again.

— added by Candy on Saturday, August 2, 2014 at 11:10 pm

If I had an answer for that one, I’d be rich 🙂

I have nothing nice to say about ABA or “puppy training for small children”. Mine are doing amazing… even the severe one… without it. But, I’ve taught both to read, both to do math (youngest (13) finished Gr 3 this year), and just parented. Toss in a big fight for good teachers and placements in school… little bit here and there (30min/day not 8hrs) and they learn.

Is it perfect… not even close. But every day, you get a request for sugar on the strawberries and then for days none… but then it returns plus a bit more and… the brain is plastic and nothing stays the same forever.

Oh… I don’t say “glad you talked” or something like that.. I just continue the conversation.

— added by farmwifetwo on Sunday, August 3, 2014 at 9:00 am

Love this. You always hit it out of the park:-).


— added by Molly on Sunday, August 3, 2014 at 9:03 am

Hi Susan- I love your writings! Nat and my son are similar in many ways. The struggle to understand what he knows or is feeling and the communication ebbs and flows (or lack of) are heart wrenching and then at times, hopeful. You mentioned your son had strep 2+ weeks ago and I assume he was treated?
We have been tracking loss of skills ( receptive and expressive) and other discouraging and debilitating things with spikes in strep. We are currently treating and I can predict with certainty
(or just hold on to maternal instinct and hope) that within 10 days we will have those more moments when the brain inflammation or immune system under attack subsides a bit we get a glimpse of strawberries with sugar.

— added by Paula on Sunday, August 3, 2014 at 9:58 pm

My eldest who is severely autistic just started saying some words in the last few months, and I am happy to say he’s retained the ability for a while. There have been so many splinter skills that have come and gone with the years, I’m so hoping this newfound ability sticks around. I could really relate to this post!

— added by kim mccafferty on Monday, August 4, 2014 at 11:17 am

Sounds encouraging. Every word is golden. And strawberries with sugar are wonderful.

— added by JanB on Wednesday, August 6, 2014 at 9:41 am

I know, right? Ned thinks things like sugar on already-sweet strawberries is gilding the lily, but I say, why not slather that thing with even more sweet stuff? Yum!

— added by Susan Senator on Wednesday, August 6, 2014 at 9:47 am

Jared has recurring questions he always asks of the people closest in his life. On a daily basis he asks how old my cat Buddy is, and is Buddy a boy? Depending on his mood, I can play with the answers, and Jared will laugh and protest “No Mom, Buddy’s not 74, he’s 8”, or it can agitate him “NO – BUDDY IS A BOY!”. We’ve turned it into a game.

For almost a year after our family friend lost his 91-year old mother, Jared would ask Harold what happened to his mother, and Harold would reply that she had died. Initially Jared would list all the people he’s known that have passed, but that has waned. We were going to be attending a Mardi Gras parade party with Harold’s sisters, and I told Jared I didn’t want him asking Harold about his mother as it might upset his sisters. Sometimes asking Jared not to do something does not have the desired effect, but he never mentioned it that day. He still asks Harold during the one-on-one conversations, and even though he knows the answer, Harold has to answer the question.

It’s interesting.

Strawberries with sprinkled sugar is one of the greatest flavor pairings ever. Lilies need gilding, sometimes.

— added by Lisa Richardson on Friday, August 29, 2014 at 11:32 am

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