Autoimmune Disorders and Autism

As some of you may know, I have recently been definitively diagnosed with rheumatoid arthritis, the actual symptoms of which I have been experiencing for at least the last eight or nine years. Well, take a gander at this article, which totally blew my mind and really, what can I add except to say this makes sense to me on about a gazillion levels:
http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=1&src=me&ref=general
Love,
Full Spectrum Mama

A Summer Idyll, Full Spectrum Style

This little vignette shows how Full Spectrum parenting is full of teachable moments...for Mama!

We have a decent swimming hole about five minutes’ walk from our house. We went there the other day when Z was just in a mood. Mama was not in the mood for this mood. 

So it wasn’t a great combination.

As G swam happily, Z threw sticks into the muck of a small rock pool and shot copious gratuitous dirty looks my way. I jumped in and joined G for a while, trying to enjoy myself despite one-third of our party being in a snit, and then slid out and approached Z.

“If you want to go swimming, now is the time,” I remarked.

From the water, G made encouraging river otter sounds and tried to make Z laugh.

She ignored him.

I am always hoping these two Spectrum opposites can be “therapeutically” complementary to one another. Z might help teach G how to relate to someone who is socially savvy (for instance, getting him accustomed to mild, good-intentioned ribbing); or G could show Z that being generous (i.e. taking the smaller piece of pie) isn’t a sign of weakness. Sometimes it feels like quite the opposite is occurring. At the river, G was being sweet and blatantly making himself vulnerable to rejection and it wasn’t swaying Z’s tough stance one iota.

My Great Grandmother Noni, a widowed mother of a huge family and a fantastic and irreverent and loving woman, gave her children the following sage parenting advice: “Don’t see everything.”

I had seen Z’s sourpuss and her unwillingness (inability?) to respond to G’s overtures and I just couldn’t take the rudeness.

“In this family we treat each other with kindness,” I snapped. “Period!”

As Black and White and Spectrum-y as I can be, I have to wonder whether some of the moral boundaries I set for my family fit the individuals concerned.* I am always telling G, “Use your most powerful [pokemon-style] move: Ignore!” when he feels that Z is tormenting him, yet here I was denying her the right to this mighty move – and big-time incapable of it myself! Maybe the kids were learning from each other in ways that weren’t so obvious to me; maybe I should have simply accepted – “not seen” -- the interaction and, as Noni’s son-in-law (my Grampy) used to say, “Leave it lay where Jesus flang it.”

Is it true, as a dear friend recently told me, that for parents the acts of holding a moral center and loving unconditionally are irreconcilable? If so, which do I value more?  As with many in my raised-by-busy-boomers generation, I felt at times a dearth of both in my upbringing.  Am I now, in attempting through the ways I treat my children to right certain wrongs done to me in those realms, thereby inadvertently creating other wrongs?

In a word? Yes. (At least becoming a parent sometimes helps us to better understand and empathize with our own parents!)

Home we walked, Z stomping and screaming the entire way. I could not carry her, because I was walking her bike. G, though, was on his bike, and I very reluctantly let him ride away from the ruckus. Since Z’s walk-yelling slowed us down, G got home maybe four minutes before we did.

He awaited us at the very edge of the driveway. Hesitantly, looking slightly uncomfortable, G asked, “Did that woman give you my message?”

“What do you mean?”

I looked over at my filthy car: “Help, my Mama is gone” was written in the dust on the back hatch.

But Z was radioactive and I needed to get her inside. A public tantrum can be remarkably depleting for all concerned. Safely in the house, she proceeded to glower her way through dinner. She lost the privilege of dessert after refusing to respond to basic queries and jovial repartee. After several further chances she also lost the popcorn, DVD, and nightly reading of Harry Potter privileges and was banished to the bathroom to prepare for bed. Which she also refused to do. As I was lifting her onto the toilet in the hope that she would deign to use it (channeling Xiao Chuan Ayi all along: “You know what? Now I am going to have to lift your body onto the toilet,” stated very, very dispassionately), she pulled hard at my thumb and I heard, through the din, a ripping sound.

Z had torn a ligament in my thumb.

Funny how one can painstakingly remove oneself from all sorts of negative situations and then find oneself feeling violated by a small child in the home that houses you both. As Z gets older, the violence of her tantrums is increasing, along with her capacity for destruction. Still, there is hope here: she seems to be gaining more security and so is tantruming somewhat less frequently while enjoying more healthy reactions overall.

I can imagine a time when Z will have learned to calibrate and refine her social persona to the point where her behavior – at least in public -- is entirely ordinary.

As for G, I am not so sure. It turns out that while he had been waiting in the driveway for us to return from the swimming hole, he had run out into the road and flagged down a car to tell the (female) driver that his “Mama had disappeared,” and asked her to “please, try to find her, and tell her that I am looking for her.”

In subsequent conversations G admitted that his actions had not made a lots of sense, considering that he had seen me mere minutes before at the swimming hole and had known Z was having a colossal tantrum. He just could not put all the relevant information together through his anxiety. Perhaps this was a Theory of Mind** Moment.

Come to think of it, a woman had slowed way down and peered at me in a strange way as we were walking home.

And here I’d thought she had given me the look because of my beet-red, wild-haired, screamin’-like-a-banshee daughter!

Love,

Full Spectrum Mama

*  I love this quote from The Autism Revolution, by Martha Herbert, MD, PhD with Karen Weintraub: “I’d rather spend time with someone who is interested in me than someone who is trying to fix me or always telling me to do stuff that doesn’t make sense” (p. 162).

** Theory of Mind is a philosophical/psychological concept that is sometimes used by neurotypical theorists to describe some expressions of autism wherein an individual may be – or seem to be -- unable to project or attribute mental states beyond his or her own to others.  Here, one might say that G was unable to conceptualize where we were if we were not at home with him  (as we should logically and historically have been). This theory, though, can be turned around to accuse neurotypical people of not having a Theory of Mind that would fit in a more autistic-centric world…

If you do go to this link, please read to the bottom of the autism part, where you will find a more nuanced view:

http://en.wikipedia.org/wiki/Theory_of_mind

Diet II – A Poem

We were driving home from Grandmother and Grandfather’s house in one of those monsoon-like storms that seem to be getting less uncommon when G informed me that he had to go, “really this time.” Through the downpour, I could barely make out that the next exit claimed to have a gas station; even the exit itself was barely discernable. Somehow we found our way to the first – closed – gas station then turned around to try to find the alleged gas station in the other direction. When we couldn’t find that one, we pulled into a likely-looking lot, surrounded by promising woods and a bit secluded. A police car pulled in after us. I explained to G that getting out of the car in the pouring rain and heading for the woods wouldn’t be appropriate at that particular moment. As I drove my courageous, whimpering son back onto the highway at a snail’s pace, the following poem popped into my head, almost in its entirety:

Villanelle -- Mad Diarrhea

(with apologies to Plath*)

I ate some food, therefore my insides churned

I bade my time, held what I held too long

(I thought that I could fart – but I was wrong)

The probiotics go sliding in with happy song

And also I ingested some sweets, and that was wrong

I ate some food, therefore my insides churned

I dreamed I ate some gluten and then cheeses round

And in the roadside woods “released” both upon the ground

(I thought that I could fart – but I was wrong)

Fermented food topples from my fridge, fibers abound

Exit possible allergens and yet…not diarrhea

I ate some food, therefore my insides churned

I fancied certain diets for our health and to live long

But I grow hungry and I want some bread

(I thought that I could fart – but I was wrong)

I should have stopped at the gas station instead

At least when you go there they’ve got tp

I ate some food, therefore my insides churned

(I thought that I could fart – but I was wrong)

Alllllrighty then…I promise, no diarrhea posts for at least a month.

Love,

Full Spectrum Mama

* This was one of my favorite poems back in the day:

Villanelle - Mad Girl's Love Song

            By Sylvia Plath

I shut my eyes and all the world drops dead;

I lift my lids and all is born again.

(I think I made you up inside my head.)

The stars go waltzing out in blue and red,

And arbitrary blackness gallops in:

I shut my eyes and all the world drops dead.

I dreamed that you bewitched me into bed

And sung me moon-struck, kissed me quite insane.

(I think I made you up inside my head.)

God topples from the sky, hell's fires fade:

Exit seraphim and Satan's men:

I shut my eyes and all the world drops dead.

I fancied you'd return the way you said,

But I grow old and I forget your name.

(I think I made you up inside my head.)

I should have loved a thunderbird instead;

At least when spring comes they roar back again.

I shut my eyes and all the world drops dead.

(I think I made you up inside my head.)