Cutting the Cord


It's a wonderful thing to be able to communicate with your autistic child.  Demands become known, needs are met, questions are answered.  What if you can't bridge the communication gap?  What if your child never learned how to communicate in any of that plethora of ways that have revealed themselves in the past thirty years? 

I think Greg is the notable survivor of this thing called growing up.  With multiple challenges in sensory issues, academics, speech and behavior, somehow he managed to let us know how he felt, and even if we didn't get his message right, he survived.  He survived our bumbling guesses.   He survived the food we threw at him to make him happy when we could not figure out what he wanted.  He even survived our attempt to pick what would make him happy and productive in society.  Jay and I made decisions about everything relating to Greg's life for twenty-five years.  

So when his group home called us Sunday to ask if Greg would like to go to Buffalo Wild Wings with the men, we answered for him.   "We're at Adventure Sport and not at home.  We'd never make it there on time."   "He just ate lunch.  Surely he isn't hungry yet."  "He will freak out if we don't give his video time at the old house."  Jay and I kicked around every negative.  Until Greg got involved, that is.   When we finally posed the question to Greg, he indicated by repeating " Buffalo Wild Wings" that he might actually want to alter his typical afternoon schedule with Mom and Dad to meet up with his group home.  Somewhere along the way, Greg had learned how to be flexible.  Jay and I had not.

More phone calls to the group home.  More clarification.  More attempts to find out exactly what Greg wanted.  Parents of communicating children have no idea.  We are the psychotherapists who are dying to find out why a patient is disturbed, but the patient won't talk. 

Greg finally said, "Both." Was he just repeating back what I'd said?   (Echolalia). Was he caught in a web of indecision, something that happened frequently with his particular form of autism?  Of course, Jay and I questioned him repeatedly, driving him crazy with our inability to recognize that he'd said "Buffalo Wild Wings" and he really meant it.

After we returned to the old house, Greg watched videos on the I Pad.   After a half hour, he stared at Jay, waiting for Jay to guess that he was done.   Jay asked, "Are you done and do you want Mom to take you to Buffalo Wild Wings?"  Greg nodded with his up and down head gesture.  He then came to get me upstairs where I was cleaning a bathroom.  I asked, "Greg, are you ready to go?"  He shook his head again, affirmatively.  I drove him to the restaurant, babbling about how if the men had already eaten, Greg might have to eat back at the group home.   

We arrived after one of my sort of speeding while driving to get there in a hurry trips.  Greg spotted his group, we found him a seat, and he sat.  As I left, he was ordering his boneless wings, but not before I'd advised his aide that he wanted boneless wings.  I ducked out of the restaurant, trying to hide from Greg.  I peeked into the window to check on my boy.   He was smiling.

Note from Greg to Martha and Jay:  "I can order my own food.  I can choose my own schedule.   I can even change plans and not spend a Sunday afternoon with you.  Don't be offended.   Let me live my own life."  

Greg cut the cord.   Jay and I would have to do the same.


 The Demon

The Demon

Greg had a multi-group home Halloween party....celebrated with a DJ, good food and good friends.   He even chose his own mask at Party City.