She walks!

I love how Will yells “she walked!” after the first clip.

I also LOVE how Ben, in his jammies and skates, points across the room to Will and asks, “you want to rollerskate?” (An RDI moment, for sure!)

And who could not LOVE Will’s response?  “Yeah, let’s ROLL!”

We’re celebrating milestones ALL OVER here!

Muppet Monday: the Muppet Show’s Swedish Chef makes Roast Turkey

Happy Thanksgiving!

Horse Farm field trip

Ben and his dad went on a field trip today to Eden Wind horse farm.  The program was for kids age 4 and up, so this was a solo event for Ben.  Spending one-on-one time with each of the children is something Mark and I have talked about implementing, but never really do.  Today was a good start.  And also, an excellent opportunity for our RDI goals.

Encouraging the development of Ben’s episodic memory is something we try to do as often as possible.  Recalling what we did everyday with emphasis on emotions and relationship is one way we work on this.  Ben usually reports at dinner the events of the day to Mark.  Today, I got to be on the receiving end of the storytelling.   I had to try very hard to give plenty of time and space for Ben to organize his thoughts and speak freely without me peppering him with leading questions or hurrying him to respond when I thought enough time had passed.  What a great lesson for me this was!  Ben had this to say about his trip–before we even looked at the photos Mark had taken.

“Mama, I rode a horse!”

“A black horse”

[responding to Mark]  “His name was Chocolate.”

“I went in a trailer.”

“I was sad.”

“I wanted go in the trailer again.”

“Molly.”  ["Molly?", I ask]  “Yes, Molly the horse.”

“I brushed Molly.”

“I gave Molly a carrot.”  [me:  "You did?"]

“Yes, I did!”  [smiling at my expression] “You’re feeling surprised, Mama?”

“We walked.”

“A grownup talks.”

“There was a grey cat.”

“I rode a horse.”

“I wanted to ride Molly.”

“I was sad. “

“You’re feeling surprised again?” [again, reading my facial expressions]

“I got a horseshoe.”

What things I can learn by controlling my tendency to talk too much!  By not having a complete context to work with, it was easier for me to withhold from “helping” Ben when he retold his experience at the farm to me.  With only my facial expressions as feedback, there was far less ‘echolalia’ or repeating what I said back to me.  There was great referencing while delivering his messages, and after delivery to record my expressions–even commenting on them.

One thing seemed clear, especially after writing down what was said, that we’ll need to encourage more shared memory experiences.  Along with episodic memory, ASD kids also have trouble recognizing their memories can also be the memories of others.  Scientists apparently refer to this development, humorously, as the “we-go” (as opposed to the ‘ego’) where there is understanding of the self as part of a bigger unit –specifically, a dyad with a parent, at first–that co-regulates and is interdependent.

So, here’s the plan of action for Team Parent:

1.  Talk less, listen more

2.  When we do talk, continue to use more declarative language, less imperative language (describing, not requesting)

3.  Encourage ‘we-go’ development by increasing shared memory experiences and storytelling that uses “WE”

I keep hearing a line from my alma mater’s fight song in my head lately.  It often seems like a battle, if not literally than certainly in our own heads,  to remediate the autism, in that a fight song is certainly appropriate.  It’s a three word phrase, and it’s been used recently in a different context that also applies.  Healing, hope, and battle–FORWARD, TOGETHER FORWARD.

Go Huskies!  And go Us!

Muppet Monday: Sesame Street’s “A’s Anatomy”

Don’t get excited.  It’s not a parody.

Grover’s timing, though, is arguably above amateur. 

Lost

We lost Ben yesterday.

We were strolling through the aisles of our friendly neighborhood Lowes, heading towards the paint department, when we realized he wasn’t with us.  A rush of panic shot through me as I backtracked every aisle we had been down recently with no sign of him.  I called out his name, knowing full well he rarely responds to ‘out of sight’ communication attempts.  I hoped if he could at least hear me, he might find some comfort in that.  I started into a little jog-run while glancing down each aisle, whipping my head around, straining to hear (was that his voice calling out?) I spotted Mark at the other end of an aisle and we shared brief and desperate “no” head shakes.  I crammed down thoughts of abduction, police, Amber Alert…tried to stay focused.  And then I did hear him–a single, gravelly, anguished call.  It broke my heart into bits.  With Ella Rose on my back in the carrier, I ran in the direction of the voice.  Then I saw him, doing a running pace in front of the washers/dryers (a favorite spot for opening and closing doors), tears down his face, crying out loud.  More bits of my heart scatter to the ground.  There are several adults nearby.  All ignoring my baby.  The Mama Bear in me wants to claw their eyes out, but there is no time.  Ben is in my arms.

Through sobs, he tells me “I’m so sad, Mama!”  and “I didn’t like that!”  To my inquiry, he elaborates, “I didn’t like that, Mama!” “Up there!” Pointing, “the ceiling!”  Confused, I ask, “the lights? You don’t like the lights?”  “NO!  Up there!”  Ben has word retrieval problems, especially when  he is stressed.  Finally, I guess right, “the speakers?”  “Yes, Mama, I didn’t like the speakers!”  “I’m so sad.  I tripped.  The speakers.”  It finally clicks and I know what happened.  Ben has many sensory integration issues that wax and wane in intensity.  He can be very sensitive to sound, especially loud, unexpected sounds.  I have seen him freak out before to P.A. announcements, yelling as if physically struck and dropping to the floor.  It appears to be a very primal fight or flight reaction to the perceived assault on his ears.    He’s done it just once before, but I know this time is the same–when the P.A. switched on, Ben didn’t just drop to the floor.  He bolted.

Ben is atypical in his autism (how’s that for an oxymoron), in that he doesn’t really prefer to be alone.  He enjoys his solitary play/narration, but only when others are in the room or at least close by.  So, wandering off or running away has never really been an issue we’ve had to worry about with Ben.  I suspect that I am necessarily more vigilant than I think I am in keeping abreast of his whereabouts when we are in public.   I also loosen up the reins a bit when Mark is with us, trusting that between the two of us we’ll be able to maintain connection.

I had noticed earlier on in our outing that Ben was feeling a bit sound sensitive,  when he turned quickly to find and meet my eyes when a saw started up at the other end of the store.  “It’s just a saw, Ben.  Are you feeling nervous? “  ‘Nervous’ is the best word we’ve come up with to describe the anxiety Ben feels.  It’s an inadequate descriptor, I’m sure.  Multiple systems are involved with Ben’s sensory issues–ears, eyes, balance and coordination, tactile sensitivity–they compound to create a not-so-safe feeling about his body in the world.  On a Bad Day, Ben is overly loud, angry, and quick to tears and tantrums.  Bad Days are when I am most vigilant on keeping Ben close.  It’s usually not hard, as he often insists on being right near me, if not *on* me while being carried/held.  Today, however, was not a Bad Day.  Other than the worried glance about the saw, Ben was happy, calm.  The complete opposite child we had with us on our last trip to Lowes who was one loonnnnngggg meltdown from entrance to checkout.  And we commented on it–how Ben was feeling good today and how different a kid he was from the last time.

It is why losing him yesterday has *me* feeling off-balance.  Bad Day behavior has been my indicator to up my watchfulness, to keep my reactors primed.  It’s like lightning in the distance foreshadowing an impending storm.  What happened yesterday was a cloudburst on an otherwise sunny afternoon.  And we were caught without our umbrella.  It is not just that I was found unprepared.  What is most unsettling is that it happened at all.  My assumption was that a happy, calm Ben meant that his nervous system was aligned, functioning well, and delivering correct sensory feedback to Ben’s body and brain.  Well, we all know what happens when you assume…

I don’t have much more to go on than observation as to how Ben is feeling.  Ben does have lots of language.  Tons of language for a kid on the Spectrum.  The application of all this language, however, leaves us somewhat wanting, of course.   Bodily sensations are difficult for neurotypical children to describe.  For Ben, it is almost impossible.   I can’t possibly know what it’s like to experience a typical, everyday noise as sharply painful enough to drop to the floor, cry out, or flee.  What vocabulary could I teach him to express feelings I can only imagine?  What could his perception of the world be like when he panics if the shopping cart rolls without my hands on the bar, when he blinks repeatedly and rubs his eyes when the lights are too bright, when he ever-so-lightly holds the sand shovel with his fingertips, while curling his fingers around too-sensitive palms?

Anxiety and it’s necessary expressive behavior have been guideposts in parenting Ben.  Without them, I am a bit rattled.  I do not wish my child to be anxious, of course, and yet I wonder what has changed.  Is he better able to manage the barrage of sensory data?  Does he have a higher threshold of input before he loses control?  Was he as surprised by his reaction to the P.A. announcement as I was–caught without his umbrella? And also, how do I navigate the potential wind and rain that arrives without warning?  Is this a development on our road to recovery, or a roadblock on that path?

I am certainly not the first mother to have become separated from her child in a store.   And Ben is absolutely not the first ASD child who has overloaded and run away.  Like those before us as well as with us now, we will adapt and learn and grow.  It is a timeless theme.  The beauty of being lost is that the only resolution is to be found.

Muppet Monday: Sesame Street’s 30 Rock

Tina Fey and Alec Baldwin muppetized.  Awesome.