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23 November 2009


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"But the underlying theme of a person understanding so very much more than their body enables them to communicate---we think about this all the time in our interactions with Charlie"

This is something to remember always for us too. Great post - scary story from the guardian.

Charlie did excellently to be able to stay in his chair and calm himself, especially after waking so early. I have all kinds of weird sensory things going on if I'm sleep deprived, I'm sure this must be more so for Charlie and others. (as it happens, Dimitri woke at 4am today, so a little extra understanding and sensitivity may be required)

Dwight F

"But the underlying theme of a person understanding so very much more than their body enables them to communicate---we think about this all the time in our interactions with Charlie. And that thought changes everything."

It's always been there with G, too. Early on, before he started talking, we caught glimpses of the evidence. Even now, while he talks, he struggles noticably with every sentence involving a significant idea. It is almost certain that he understands more than he is able to convey, yet how much more and how he understands it remains unclear to us.

And yes, when you approach it as assuming at least some of what you are saying is registering without direct, obvious feedback it certainly does change a LOT of things.

P.S. It's been helpful that we've worked to learn to think in his language, too. I suspect I've always been using a distant dialect of it anyway. ;)

Kristina Chew

Something in the air, today Charlie woke _before_ 4am. Coffee is being made.

susan senator

When Nat was little, and even sometimes now, I can't help but assume that he *is* the way he presents. But then something will remind me that I truly do not know what he knows and usually that something (someone) is Nat.


woke_before_4am - I thought may be it was some kind of internet ματιασμα (evil eye), I read about Charlies lack of sleep and brought the vibe home :-)



I found this article interesting. It was in our news a short time ago. It's called "learning to talk, changes how we hear". It's the start of the research, but it's still very interesting.

My little one gets up some days at 4 and by end of day is tired. He knows to stay in bed after a trip to the bathroom and play with his toys until the alarm goes off at 6. I make certain the school knows as well. There have been no excessive behaviours, but atleast if he's tired at the end of the day they know why.


Kristina, I'd like to thank you once again for sharing your life with us. My child is still young (not quite four), but I've also noticed that sometimes, words can be his worst enemy. (Ironic in some ways, when we devote so much time and energy into hoping/praying/wishing that they begin to speak!) "No" means "never", or "not ever" to him, and even saying "no, not right now" can trigger intense emotions because he can't differentiate between the sense of "you can't have x right now, but you can soon" or "you can't ever have x". Reading your post has given me a new perspective on the problem this morning. (We have an early riser too- E is often up by 5:30, which can be exhausting when combined with his baby sister's teething:-( )


Oops, I meant that E's not quite 5- sleep deprivation is taking a toll on all of us this morning!


It saddens me when I think that parents such as those who have written comments here, and you and I, are exceptions rather than the rule. Too many assume that lack of language/universally understood communication equates to lack of awarenesss or lack of engagement. I think that is where we (as a society) fail our children (no matter how old or how young).

Of course, you know me, I think that EVERY action is a communication...

Estee Klar

Adam understands. I have to watch what I say. I never doubt for a moment that he's not taking everything in, even when it appears he is occupied with something else. I know he understands by how he reacts, and then how he also listens when I think he's not and does something I ask him to. There are thousands of ineffable signs that I know that he knows. And what's important is to make "the least dangerous assumption."


Well observed, Kristina. There's so much more to words than the words, no matter who you are. I even say "no" sometimes when all I'm really doing is delaying my "real" answer until I've processed the question.

I wonder why he's waking so early. Does he sleep heavily? TH does, but he also says that he wakes often in the night and worries, and I know that when he's sleeping, he moves constantly. Charlie must still very much be processing these changes still. I wonder if the early waking means that he does *like* his school.

Kristina Chew

The one day I am sure Charlie will sleep in is this Friday when he has an 8am appointment to get some testing done.......

Dwight F


We ended up going with the key phrases "maybe later" or "maybe tomorrow". They were literally true as sometimes it would be the next day, though they eventually ended up meaning roughly "no", at least as he used them (and yes, he'd turn those phrases on us ;) ).

But he found them much easier to deal with than "no". He'd become aggitated by not go as far and recover faster.

Kristina Chew

Charlie used to be a really heavy sleeper. He'd have a hard time falling asleep but then he would be out like the proverbial log. He used to never wake during the night. So these (very) early wake ups, and over consecutive days, are unusual. I do think he's coming down with a cold (sniffles) so that could be affecting his sleep, and he's also aware of my parents staying with us. And I do think there is a part of him that wants to wake up and go to school, to make sure he gets there.

Kristina Chew

Experts disputing Houben's communication which involves FC sort of techniques.


@niksmom -- this is something I have to fight to instill into every new paraprofessional that walks into my classroom...and with varying success. Some never see past the exterior, sadly.


When I first saw that photo of Houben with his aide, it was apparent that it was facilitated. How can the untainted veracity of the his messages be tested? If it turns out to be legit in Houben's case, would it make its use in autism less questionable? Because the most important question is whether it makes the individual whose communication is being "assisted" actually a happier and less frustrated person.

We are all frustrated in our communications everyday, unfortunately, especially with the people we want to be closest to. "Does anyone every truly understand and know why another individuals does and say what she or he says?" The impossibility of communication used to torment me. Now it appears as the existential sadness inherent in the human experience. The myth of the Fall of Man and Original Sin's marks becomes an allegory about the separation of men from each other and from the Godhead (if there is one.)

So every child is a mystery to his or her parent. And every loved one presents to us as an opaque screen, with an interiority hidden to our understanding by the inadequacy of language to convey a fixed meaning. Suddenly we are blindly stumbling through graduate seminars in Post-Structuralism rather than growing closer to and more calm in the presence of our loved ones.

Your desire to understand Charlie is so deeply felt and universally felt by those of us who love our children as individuals that we can only admire your bravery in presenting its dilemmas and heartbreak so clearly.

What does Charlie use to express himself most easily? Movement, colors, numbers, building things, ordering things?


@Dwight F- thanks for the suggestion!

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by Kristina Chew …………………………

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