What Does It Look Like When We Think?

We shall probably get nearest to the truth if we think of the conscious and personal psyche as resting upon the broad basis of an inherited and universal psychic disposition which is as such unconscious, and that our personal psyche bears the same relation to the collective psyche as the individual to society.

 Carl Jung

Your visions will become clear only when you can look into your own heart. Who looks outside, dreams; who looks inside, awakes.

Carl Jung 

This won't be pretty. I had a dream the night I brought Sophie back from the hospital last week. The dream came in the early hours of the morning, after I'd woken and fallen back to sleep. That's the time for the most vivid of dreams, in my experience, when I most hope to not just fall asleep but into lucidity. Lucid dreaming. There was something going on, and I was somewhere, with someone and then there was just shit. I imagine that got your attention because -- really -- who wants to hear about someone's dream? But the shit. What's that about? I'm telling you that that's what I dreamt. I love the word dreamt, that emphatic t. I dreamt of shit oozing out from under my fingernails. There's no other way I can write that, although I tried. This won't be pretty. I dreamt of shit oozing out from under my fingernails.  A dream for a therapist, you might be thinking. I thought so, too. I certainly wouldn't tell it here. What could be made of it? I had, after all, been in the shits with Sophie, had taken shit from The Neurologist, was sick of all the shit we'd been through. I was tired of shit. It was oozing out from under my fingernails. I am lucid. I am also connected to Sophie, and she is connected to me. How do you know what she needs? people ask. How does she communicate? or What does she know? I say maybe everything or maybe nothing. I know everything because I see what it looks like when she thinks. She's told me things or told me thinks with her eyes. I dreamt of shit oozing out from under my fingernails and thought about it for a few days and then stopped. How do I write this? I guess I just write this. Right this. Right, this. Seizures and benzos and inactivity cause constipation. This has been an ongoing problem for much of Sophie's life, but it pales, of course, in importance, to the seizures, to the other shit. Until it doesn't. Still, I can't write this. We relieved Sophie of her constipation, and the result was astounding. The literal shit was astounding. She is, like that, better. I don't even know what to say, but I do know what to think.

SOS

Oliver has learned Morse Code, downloaded an app to "do it" and walks around the house communicating with us. The only trouble is that each dot and each dash on the iPad makes the most godawful, annoying sound you can imagine. This afternoon, when Sophie came home from school, he insisted on showing it to her, and I gladly obliged. Yes, I said, go in her room and sit with her and demonstrate. I myself retreated to my own room, closed the door and drew sustenance from the McMansion drill sounds coming from out my back door.


Dot Dot Dot
Dash Dash Dash
Dot Dot Dot.

Speaking with your hands

My Italian grandmother (standing) with her sister in Mendocino

My kids make fun of me for many things -- lately it's the "mom selfie" which entails a certain angle that curtails the double chin effect, and they always mock how I use my hands when I talk. My father, whose family is from the Calabrian region of southern Italy sent me the following video with the suggestion I start teaching Italian hand-speak to Oliver as a homeschool option. Here were his exact words: To ensure Oliver's retention of his Italian heritage while being home schooled you might include this as part of his curriculum.  I will test him myself. Last night, I posted my thoughts about the CNN documentary on both Facebook and here and got an overwhelming response which included a heated argument about me expressing the tiniest bit of sympathy for the insufferable Governor Christie and the way the media edits and shapes a debate, so today I admit to feeling a lassitude that calls for something light. Picture me without a double chin, using my hands to say all that.

Enjoy:

)

One More Thing

Oliver, during No Name-Calling Week in 2010

I've been mulling over this Ann Coulter fiasco and feeling conflicted, still, on whether or not to keep making a fuss. I understand people's assertions that Ann Coulter is about making a fuss and that our outrage and disdain for her fuels her. I understand, too, and lean probably closer to the assertion that it's terrible to say nothing and that fueling her fire is perhaps the price to pay because silence is far, far worse. One of my favorite bloggers, Stephen Kuusisto of Planet of the Blind writes that Ann Coulter's name-calling has strayed glibly into fascist rhetoric. I'm not going to stop thinking about it or talking about it, either, no matter the initial "power" it lends Coulter.

Last night, after emailing a bit with another mother of a child with special needs, I thought about the publicity in general and how good it is in general. I thought about the huge numbers of people who have come to my blog over the past three days, when I've written about this. I thought about the many people I know that continue to use the word retard in conversation, casually, and while they might remember not to when I'm around, or quickly apologize if it slips out, they're still using it. A woman who performed in Expressing Motherhood, a warm and funny and beautiful person in every way, made a comment that she felt like a retard. I recently went to a lunch with a group of women, most of whom were my close friends, and one of them described herself as a big retard when she ran. Now, I know these people don't think anything of this word and perhaps don't even realize how hurtful -- even devastating -- it can be, to me, to Oliver, to Henry or The Husband. I'm not sure whether they realize that when they describe themselves as stupid or goofy, they're comparing themselves to Sophie. I'm thinking, though, that big splashes like the Ann Coulter one might imprint in otherwise wonderful, loving people and that they might, at last be educated. I'm hoping that they read some of the letters and emails and blog posts and Facebook updates that I've seen these past few days, have written myself, and really work harder on how they communicate.

And if they don't, I'm afraid I have to agree with many others that it's a reflection of their characters, and they are, basically, assholes -- no better than Ann Coulter.

What do you think?

A Silence That Hums

A steady stream of hums and starts and stops, the goddess of non-verbal communication spoke of oceans and too-large moons, of tides and weariness and the swaying of trees, of dust motes that settle in lavender carpet dots and how light plays on window blinds through trees. I told Sophie, if you could talk this morning you would be positively chatty.

In my spare time, while lounging,

I helped to produce a webinar that was recorded in January with Project Access and The Epilepsy Foundation of America. Using Technology to Communicate with Your Developmentally Disabled Child ** features my friend and colleague, Jennifer Bertram (the mother of a child with both autism and epilepsy) and Cindy Cottier, an extraordinary speech pathologist who specializes in augmentative communication technology here in southern California. Jennifer and I share our personal stories and successes with Cindy, who provides an in-depth view of various communication tools and explains how the iPad, in particular, is used as a communication tool for children and youth with developmental disabilities. There are wonderful resource pages and tips on portability and hardware. You can listen to the pre-recorded webinar by clicking this link (there is no need to pre-register, and it's free!):

http://connect.epilepsyfoundation.org/p32641212/http://connect.epilepsyfoundation.org/p32641212/

On February 14th, we will host a live Question and Answer session -- Cindy, Jennifer and yours truly. The Q&A is also free, but you do have to pre-register. Here's the link to do so with information:

 http://ncpawebinar2.eventbrite.com/

Finally, Julia Roberts (not THE Julia Roberts, but a far more interesting one!) has been kind enough to help spread the news on her wonderful website SupportforSpecialNeeds.com . You can access the webinar and the Q&A links there as well!

Finally, please share this information with as many people as you can who might benefit. I would so appreciate that -- and will allow you some time on my couch with homemade bonbons if you do so.

** I apologize for the less than stellar sound quality of the recording. Project Access is working on improving the link, and hopefully it will be soon.

Yes No

Sophie has been working with and playing with her iPad for nearly a year, now, and the going is rough and inconsistent, but there are times when it all bursts forth, when those neurons connect and don't spark or combust but rather hum with illumination. Yesterday was one of those days when Sophie got home from school and collapsed onto her bed, pulling her legs up under her Indian-style. Oliver lay across the foot of the bed with all his papers from his first day of school, chattering to me about what he did and what they were going to be doing. When he stopped talking for a moment I wondered aloud what Sophie's day might have been like and then got up to get her iPad to find out. Sometimes, when her aide remembers to, she'll record Sophie's "day" into the iPad so that Sophie can "tell" me. Yesterday, probably because of the chaos of the first day, she did not, so I went to the YES NO screen.

Basically, this is a screen with two boxes, one green and the other red, that say YES and NO. When you swipe or tap the YES, you hear yes, and when you swipe or tap the NO, you hear no.


Got it?


YES       NO


And can I tell you that we had a real conversation yesterday? It was a conversation that inspired Oliver to stop chattering, look over at us in utter amazement and yell, 


Sophie, you're on fire!


Here's a bit of it:


Me: Sophie, did you have a good day at school today?


Sophie: Yes

Me: Did you see your friends?

Sophie: Yes

Me: Was it hot today?

Sophie: Yes

Me: Is Henry in the room right now?

Sophie: No

This is when Oliver looked up.

Me: Is Oliver in the room right now?

Sophie: Yes

Me: Is Valentine a cat?

Sophie: No

Oliver is sitting up now, his eyes as round as saucers.

Me: Are you smart, Sophie?

Sophie: Yes 


Sophie, you're on fire!