As Far As I Can Tell (#495)

“You’re going to feel a big let done once this is all over,” more than a few people said to us and especially to Jim in regard to Friday’s Autism and Advocacy conference.
It is only the day after the conference and we are still “feeling the good spirit” or, as I rather like to think, “the buzz” from being in a room with a couple of hundred people and listening and talking and thinking about the one thing that brought us all together:


I will be writing about the different panels and speakers over on Autism Vox for the next few days (this is what I said for the closing reflection, and this is a wrap-up of the panel Advocacy and Presence: Communities of Faith Engaging Autism, the conference’s morning panel). During the second panel, “The Varieties of Autism Advocacy,” a very engaged and often passionate discussion ensued regarding what I think is one of the more contentious issues out there in Autismland, and that is variously phrased as:

  • Accepting one’s child being autistic with all of his or her quirks vs. trying to make one’s child “indistinguishable” and always acting “appropriately”
  • “Intervening” in one’s child autism vs. letting him or her “be”
  • Acknowledging one’s child right to be autistic as he or she is vs. believing in the necessity of changing him or her to “fit in” and be “normal”
  • Letting a child engage in humming, flapping, and other self-stimulatory behaviors vs. teaching a child not to engage in those behaviors
  • To cure or not to cure?

These questions arose in the wake of Kassiane Alexandra Sibley‘s speech, which began with her clapping her hands LOUDLY in front of her face and saying, “This hurts!” and holding up the plastic-encased cards she carries with her, one of which says “I am autistic,” and then speaking very forcefully, always compellingly, and often movingly, and no more so than when she mentioned the Autism Every Day video, criticized it and Autism Speaks. and then the death of Katherine McCarron. I very much wish to know what Kassiane’s own view of the exchange with her and various members of the audience and the other panelists (the four of whom were parents of autistic children).

One parent described her own child in words that reminded me more than a little of Charlie, in regard to very limited communication skills, difficult behaviors, and his need for lifelong care. I walk in her shoes: Charlie traveling alone across the country on an airplane to give a speech at a conference as Kassiane did seems rather an unlikely image, as far as I can tell.

As far as I can tell: I quote the words of one of the conference attendees, J. Kevin Vasey, who co-authored The Road Trip: Life with Autism with his mother, Gloria Pearson-Vasey. Kevin does not speak and who writes on a keyboard, and “as far as I can tell” is, as his mother noted at the reading that my sister mom-blogger posted about, along with a description of where her daughter M. is right now. Kevin is 37 years old, the same age as me. He sat in the third row between his parents for the entire conference, right behind a friend of ours who happened to be wearing the same color shirt. I was not able to speak too long to Gloria or to her husband Jim or to Kevin, but I felt their presence more than strongly, and became attuned to the shifts of expression in Kevin’s face—in his eyes and cheeks—and in the movements of his fingers. He sat forward more in his seat at times (when Gloria read his writing at the reading, in particular) and, though he said no words, his presence emanated throughout the whole day.

I should not be surprised at this: Kevin’s is the language, expressed through the whole body in ways subtle and sometimes more obvious, that is Charlie’s too.

Jim and I did not see Charlie from Thursday morning until we returned home at midnight on Friday. On Thursday night when we picked up Bruce Mills and Kassiane at the airport and for all of Friday, the day of the conference, we were in hyperverbal mode: We talked, we listened to so many other people talking. we talked, they talked, there was too much to talk about.

This morning, Charlie came into our room with a grin and then, after bounding under the covers, told Jim “shirt off! socks off!” Then it was “b’ack car, b’ack car” and off he and Jim went for a ride in the rain. While Jim and I picked up another conference attendee and parent, theology professor Tom Reynolds of St. Norbert’s College, Charlie spent the day with my parents, going to Manhattan on the train and meeting my two aunts. Jim and I made our way back to Fordham’s Bronx campus to attend to some details and then met up with a consternated Charlie who, as my mom made clear when she called at 8pm, “misses you and Jim.”

The three of us did what we have done so many a time in our lives together: Got in the car and went for a ride. “Musix,” said Charlie “Turnonn.”

“Jimi Hendrix?” asked Jim.

“Hendricks?” said Charlie.

Back at home, Charlie ran back and forth in the shower stall very gleefully and pulled at my arm—“Turn on!”—until I showed him pictures on my computer, including some from the picture presentation of autistic persons that was shown at the conference. Then he jumped into bed and rolled and kicked and pulled the blankets out all over the place and lost track of the green squishy ball in the sheets. Sounds and phrases of sounds were uttered melodiously, and back and forth, by Charlie and by me in the non-verbal exchanges that could be considered conversations between us.

I ended my closing reflections for the conference by referring to one of these conversations that Charlie and I have. The one I spoke of did involve words—“hepp” and “I needepp” as said by Charlie—but relied just as much on the same sorts of musical phrasings and tones that make up the wordless conversations Charlie and I had tonight. As far as I can tell.

And, as far as I can tell, if you had told my two aunts in their colorful sweaters and my parents that the very, very shy and quiet girl who preferred to read books and never ventured beyond her driveway would speak up, and would speak before a crowd of people in an amphitheatre on a university campus in Manhattan, and about the Latin and Greek roots of words, about autism, and advocacy—-they would have found that a most unlikely image. Ridiculous, even. Impossible.

As far as I can tell.

8 Responses to “As Far As I Can Tell (#495)”
  1. KC'sMommy says:

    Thank you for sharing with us Kristina.

    Charlie has excellent music choices!!

  2. Anonymous says:

    Kristina , your post renminded me about a young autistic guy.

    My husbands brothers friend has an autistic son….. who did not speak until he turned 18.

    He now has a job and catches the bus to work. He lives in a house next to his parents and has his evening meals with them. He is thirty three years old now..

    Who would have thought.

    . Back then there were not the educational interventions that we now have. His mother …( also a teacher) did what she could..

    Hey gotta tell ya.. My little bloke had his first swimming lesson yesterday.

    Rory and I were quite worried , but he took to it like a duck to water.
    In fact we were very surprised. No anxiety or tantrums. He loved his young teacher Sarah.. and kept saying afterwards. ” We go back and see Sarah tomorrow.”

    We certainly were relieved.

    I thought of Charlie..

    Certainly some kids seem to have an affinity with water..It calms and soothes…

    Got to thinkin’

    Nothing is set in stone, in this life..

    As far as I can tell.

  3. Kathy says:

    Sorry Kris, that was me.( Forget my head if it wasn’t screwed on!!)

  4. mothersvox says:

    Hey Kristina, It was an awesome conference. I just did another post about it, but blogspot isn’t working right — your comment disappeared and my new post won’t load. So I’ll give it a couple of hours and maybe they’ll fix it.

    Anyway, great, great conference. So very inspiring, in the deep sense of infusing with spirit.

  5. Kathy, hooray, hooray! Nothing is set in stone with our kids—I would rather say, things can change as fast as water flows!

    MothersVox, watch me post too many, too many times on the conference….. KC’s mom, you’ve got to tell us what music he likes!

  6. Shawn says:

    I’m still pumped up from conference.

    I was inspired to go to church as family for the first time since our setbacks during the spring.

    I’m sending and recieving emails from people I didn’t even know before Friday.

    I had the strength today to help mu son over a big hurdle of trying a new skill for the first time. It’s a skill that should help him feel better about himself, even as he makes mistakes. I’m ready to help him coach and practice with him.

    I have at least a dozen blog posts rolling through my head.

    Must . . . pace . . . myself!

  7. Shawn: I can hardly wait to read each one! I’ve got to pace myself, too….

  8. kyra says:

    it sounds like it was a powerful experience, kristina! hooray to you for doing it. as far as i can tell, it’s a feat for ANYONE!

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