just another body part?

While nursing my baby girl, we look into each other’s eyes for a long time. As I’m gazing into her eyes I feel something, a kind of melting….. a kind of evaporating…

The eyes seem to gaze into the center of things...they can see into the beginning of you: where you start. If the right person looks at you too long you can feel so very exposed. The eyes are intimate and personal. Is this ingrained in our biology or in our psychology? Do we need this trait for intimacy and survival?  And I ask myself what is it exactly about the eyes? Why couldn’t I look at her nose or her hair and get the same moving experience? The eye is just another body part, made of cells. Even though they often feel very deep, you really can’t see further than the retina. Perhaps it is the ability of seeing inside, literally, even if it is just a fraction.  Beyond the surface of a human are the secrets waiting underneith.

One telling autistic trait is the aversion of eye contact. I believe it is even written in the DSM IV criteria for an autism diagnosis. A University of London team studied 104 six- to ten-month-old babies, 54 of whom were at elevated risk of developing autism because they had an older brother or sister on the spectrum. The researchers used a sensor cap placed on the scalp to register brain activity while the babies viewed dynamic images of faces that switchd from looking at them to looking away from them, or vice versa.

This experimental laboratory test showed that most infants who did not go on to develop autism showed clear differences in brain activity when viewing images of a face looking toward them versus one looking away. By contrast, infants who did go on to develop autism tended to show little difference in brain activity when viewing the two types of shifting gazes.
Studies have shown that the human brain displays characteristic patterns of activity in response to eye contact with another person. This response appears to be critical for face-to-face social interactions. Research has also shown that older children with autism have atypical patterns of eye contact as well as atypical brain responses when making eye contact. "Researchers studying infants at risk for ASD are now able to show differences in brain function as early as six months of age,” says Autism Speaks Director for Environmental Science Alycia Halladay, Ph.D. -see footnote

In one of the books I have read written by someone living with autism the author couldn’t get over how us “neurotypicals” are so obsessed with eye contact. They described it as “just another body part” We ARE obsessed with eye contact, right? We have the expression “the eyes are the window to the soul”, which must sound utterly ridiculous to someone with autism. But there is something to it, because I can feel it. Why the eyes? What are they meant to do? Is their function beyond that of seeing things? If so, where does that leave people on the spectrum?

article exerpt from http://www.autismspeaks.org/science/science-news/infant-brain-activity-flags-autism-risk

Calder, meet Ray

Last night I found a note taped to our new upright piano which reads: "Grown ups should not play the piano". Lately, Calder has been bothered when Eric or I sit down to play the piano.
I've tried to reason with him. I've tried to explain to him that the piano is for everyone to enjoy, not just him. I've also tried to explain to him that his Dad played on this very piano when he was a kid just like Calder! None of this matters to him....you know, he's 5.
So I decided to tell him this morning,"you don't know about Ray Charles do you?". Not only was he a grown up, he DID play the piano, he SHOULD play the piano, and he was very good, at that! AND he was blind; his eyes were broken. No argument there, the guy was brilliant. Calder knows Ray Charles' music because we sometimes play it in the car.
So, even with the best evidence supporting my case, my 5 year old will still attempt to argue with me that grown ups should not play the piano. I will keep my Ray Charles nearby and play it as often as I need to in order to make my point.

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hugs are often hard

What I'm going to write about next upsets me a bit, only because I haven't figured out quite what to do about it.  We were recently visiting friends in Arizona and Calder got to visit with his friend Thackery who, like Calder is 5 years old.  They played together really well having a lot of fun together.   The second day of our visit Thackery fell and hurt himself, not too badly but enough to get Mom hugs.  While on her lap he says to her "I want my friend Calder ".  Calder was nearby and was able to hear this request/compliment.  He didn't respond so I repeated what Thackery said and tried to explain what to do.   Calder didn't respond in any way and in fact he resisted my attempts to encourage him.

Today after school his best buddy classmate gave him an unsolicited hug goodbye which in my thinking is a very sweet thing to do.  But Calder didn't like it one bit and recoiled.  I tried to get Calder to settle for a wave and "goodbye" to which he did begrudgingly with totally averted eye contact.

I'm not sure where to begin with this one. Do I teach him social expectations or do I support his wishes not to be touched?  I hate putting limits on him because he often surprises me.  I feel so bad for the kid on the receiving end ( or non-receiving as it may be...) because usually it is a dear friend and I can sense hurt in their eyes.  I want my kid to have friends and know how to show comfort to them when they are in need. 

Parents don't always know the answers right?  Sometimes there is a curveball thrown your way.  I wish I had some great explanation for Thackery but all I can say is that Calder does love you and you are very dear to him.  He remembers things about you that most kids will forget.  Maybe he just has different ways of showing it. I know as Calder gets older and better at organizing his thoughts, he will be able to explain more things and how he experiences them.

I do think the gentlest of touches can hurt him and that when he says that washing his hair hurts, he is actually experiencing a form of pain. I don't always know what 'normal' or 'typical' looks like.....maybe a lot of kids recoil ....but from their best of friends? I don't really ever see it, but maybe it's out there.

"blending in" is overrated

Sitting down in a hotel restaurant in Deming, NM we had no plans on being the strangest family in the place.  It all started with the kids menu.  What would Calder eat?  Oatmeal, banana, and yogurt...ok great, we're going to be just fine.  Until.....well the oatmeal is different than the kind at home.  Once Calder understands that, we're down to the yogurt and banana, still a pretty decent breakfast.   We ask (badger) the very young waitress for a banana which now we are told they don't have.  We decline the bowl of cut fruit assortment that Calder won't eat.  We're down to just the yogurt.  I warn him that it will be pink with bits of strawberry.  We strike a deal. We order our food and get the fruit cup for Elodie (easy).

When the meals come we see that the waitress didn't understand that the low-carb breakfast plate Eric ordered should not have potatoes and bread on it.  We sent the waitress and the carbs away to the kitchen.  She no sooner left when she returned with the enlightened notion that since Eric's plate was already cooked did he want the potatoes and bread anyway?  She had no idea what "low-carb omlette" implies.

Calder had come over to my side of the table and we were "eating" yogurt together, meaning that I was picking out the whole fruit and eating that while he would get fed spoonfuls of creamy *pink!* yogurt.  I decided to point out that while we had to dismiss the oatmeal and banana, I was very proud of him trying a yogurt color other than the usual white.  Right in the middle of my compliment he got his bundled silverware, asked me to unwrap the napkin out, walked over to Dad's side of the table and proceeded to spit out all the contents in his mouth, which was creamy yogurt, a strawberry molecule and spit.  Eric started to tell Calder that doing that was gross and unacceptable when I interrupted him and said that it was I who taught Calder to spit out food onto a napkin.  Otherwise it would have looked a lot worse...spitting in his hand, spitting in my hand, spitting on the table, spitting on the floor all possibly while freaking out.

In this moment after Eric's side of the table has been cleared of anything the baby could grab, while Elodie was eating bits of cut fruit (dropping some on the floor next to the fallen cheerios from last nights dinner), I noticed how thoroughly I had picked through my egg and bacon muffin.  I wondered out loud "I see where Calder gets his pickiness from" while complaining that american slice cheese ruins anything it touches.

So here we were a family all feeding each other.  Without the carb sides, Eric was still hungry and I was feeding him spoonfuls of my rejected american slice cheese and disproportionate amount of egg on my muffin.  Eric was feeding the baby, I was feeding yogurt to myself and Calder...

For most of my life I've never bothered much with "blending in", but this morning I really felt like a family with very freaky rituals revolving around food: like maybe even when we are in the privacy of our own home we take turns feeding each other under the full moon, facing West.

"By the light of the moon...by the light of the stars...from there to here...from here to there...funny things are everywhere". (T. Geisel)

using our imagination

Counterfactuals are the scenerios we play in our minds to imagine other worlds: what might happen,  what could have happened.   Counterfactuals are the "woulda,  coulda, shouldas".  The ability to create alternative worlds in our mind is a very common human trait.  We do it all the time.  It allows us to imagine our world in a different way and allows us to make changes in our world. We see this phenomenon in children manifest through imaginary friends, pretend play, and made up stories. 

In studies, it has been shown that sociable children are more likely to have imaginary friends than shy children. Having imaginary friends allows a child to have greater theory of mind: a term used to describe the understanding that other people can think differently and have different beliefs and intentions  than you do.

Children with autism,  on the other hand, do not live in a world of counterfactuals and struggle with theory of mind. They are most comfortable with facts only and things which are measurable, logical and predictable.  For many kids on the spectrum, pretend play just doesn't make much sense...why bother?

I've noticed lately that Calder has a really hard time making things up, surmising, and guessing.  If it is not clear to him what is happening in a new picturebook for example, he hesitates to guess, or even make things up.  "Whats happening in that picture?".  "I don't know".  We are learning right now how to 'use our imagination'.  Our imagination is in our head (as concrete a biological placement as you can get),  and our imagination is the part of us that makes up stories.  This stumps him.  Calder wants to be told the right answer in which case he will memorize in one instance.  When asked the same question again at a later date, he will find the answer filed away in his mind and recall what you had once said.  That is quite different than looking at a picture for clues to what is happening.

The other day I was trying to explain to him that when I  cook rice pasta, I don't time it, I just guess when it may be done and then I test it.  This really rocked his world.  Up on his stool ready to punch in the time on our microwave timer, he just could not accept 'guessing'.  We went back and forth forever...."give me a number", "no Calder, I'll wait and test it". Rice pasta is not nearly as forgiving as semolina pasta.  It goes from raw, to falling apart and mushy very fast.  And it depends on how much water and pasta is in the pot which I never measure.  I think this is why he loves recipes and baking as much as he does, it is very concrete.  Baking, in fact is much like a science.

Calder has been working on story skills with his therapists the past few weeks, and already since I have begun this post about a week ago, he is beginning to explain pictures. I don't doubt for one second that one day he will be making up so many stories I'll have to wonder what is truth and what is make believe.