Funny Things: A Ben Update

I have been terrible about updating this blog.  You can blame Facebook, if you’d like.  It’s a pretty good scapegoat for most of my inadequacies lately.  This isn’t really even a “real” blog entry.  It’s an excerpt from an email I wrote to our RDI/HANDLE consultant about how Ben is doing.  We’ve been on a hiatus from RDI, not working on specific goals, but keeping general principles of living RDI in mind.  During this period, we’re doing a full-on HANDLE program with Ben, instead.  HANDLE uses gentle, simple activities that strengthen underlying, weaker body systems that ultimately support Ben’s neurological functions, physical, emotional, and cognitive development.   Strengthening and regulating those systems (vestibular, visual, tactility, visual-motor, auditory processing, etc. ) are what drives Ben’s progress.  Here’s what we’ve been observing lately:

Ben is doing really well with lots of things, not as well with others.

We’re seeing definite improvement in overall stability and ease in using his body.  Things that really showcase this for us are
1. watching him bowl (no longer just plunking the ball down, but actually swinging the ball, twisting his torso, bending his legs, etc.),
2. swinging on the swing (not just moving legs in and out, but leaning back and into the swing to propel his body forward),
3. running (much faster than before, definitely having ‘air time’ with both feet off the ground at the same time during his stride),

4. riding his horse (he adjusts his body–not all the time–when he slips sideways in the saddle and will be learning to use the reins soon to guide his horse.  He also loves to trot, which is a fairly quick, bouncy walk.)

5. writing and drawing (can write all the alphabet letters with visual/verbal scaffolding, has a new love for drawing CARS.  He always has a story about the car he is drawing, even if it usually has the same components–name of car, the car’s features, and of course the SMOKE he draws while making car noises.  If I suggest something else, he’ll agree if he can incorporate it into his car drawing.  He’s much more confident at attempting different things and uses a more mature pencil grip–not fisting, but using fingers)

and 6.  boogie boarding!  This is the newest thing for Ben.  He’s always loved watching other kids “surf” while we’re at the beach and actually asked me if he could do it the last time I took him by myself with his siblings.  So, this past Saturday when Mark was with us, we bought a board and Ben jumped right in and LOVED it.  He figured out how to do it just by watching others, and with some verbal/visual help from Mark realized where on the board to hold on for maximum lift and speed.  Crazy!

The things that we’re not seeing changes in (and are driving me crazy) are

1.  eating with his fingers
2.  dawdling and getting sidetracked when he is expected to get his shoes, get dressed, pick something up, put something away, etc.
3.  freaking out about nail cutting (fingers and toes) and not as intensely, but haircuts are still a challenge
4.  getting out of bed every night to get in bed with Mark and I

5.  pronation is still pronounced, not sure how to judge improvement there other than increased mobility as mentioned above

6.  just recently, I noticed that holding hands with other children is something Ben is very tactilely averse to.  Holding an arm was an okay alternative and holding an adult’s hand is okay, too.

7.  not sure if HANDLE would address this or not, but Ben definitely does not distinguish between a purposeful and accidental action, in terms of being hurt by the action.  He has this need for “revenge”.  If his toe is accidentally stepped on, he will not rest until he steps on the offender’s toe.  He used to avoid touching or being touched by the baby, but now she is free game for pushing, hitting, kicking, etc.  He doesn’t seem to understand the concept of intent.

8.  anger is also his “go to” emotion when he disagrees with something.  He’ll yell “NO” at kids who ask him to play and really holler at Will when he is not interested in interacting with him.  To be fair, Will is often an instigator of conflict between the two, but just as often he is not, but gets yelled at, or physically hurt anyway.
Ben is using language more than physical violence, though, to deal with the anger lately.  He can actually be quite creative.  “I’M AN ANGRY MONSTER AND I’M GOING TO BITE YOUR TOES OFF!”  “I’M GOING TO LOCK THIS DOOR AND RUN AWAY AND YOU WILL BE LONELY!”

One of the best things we’re seeing emerge with Ben the past few months is a social sense of humor.  He’s always laughed at things that privately make him laugh or are amusing to him auditorally, but recently he’s enjoyed watching America’s Funniest Home Videos and laughs when people or pets do unexpected things.  Such a great sound to hear him laugh along with everyone else, knowing he ‘got’ it.  There is a lot more giggling with his brother and occasionally his sister, too, over ‘private’ jokes and shared experiences.  He’s also been “making jokes”, although I’m sure they’re not exactly intentional.  I’ve got three examples:
1.  While cleaning with me the other day (he sprays, I wipe), Ben starts to sing a la ‘Bob the Builder’ “Bob the Cleaner!  Can he clean it?  Yes  he can!”
2.  While talking over dinner about how pilots have to go to flying school to get their license, Ben comments that he has a “horse riding license”.
3.  After asking him to stop touching things in the grocery store for the millionth time while shopping, he looks at me and says, “but touching is in my blood”  This is from a movie where the actual line is “racing is in my blood”.  Cracked me up.

So, there you go.  A Ben Update.  With stories and  photos to boot.

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!