Just Another Label

Our book club selection this past month “The Goode Life: Memoirs of Disability Rights Activist Barb Goode” was written by local author Barb Goode.  We were very fortunate to have Barb attend our meeting and share her experiences as a self advocate who has spoken all over the world.  Her life is an inspiration and as a parent of a child with special needs, I would definitely recommend her book.  It was an eye opener into what was and what is possible. 

One of the things Barb wrote about was the use of “labels”.  Something I’ve never been particularly fond of either but unfortunately required in Riley World.  R has lots of labels…so many that I often say he doesn’t have to go to university; he already has a number of “designations”. 

Riley has what I refer to as OCD (Obscure Communication Dialect).  Often times, no means yes and vice versa.  He will make what appears to be a positive comment/observation:  eg. “You’re here with me” and actually mean go away, he doesn’t want you with him.  Then there are the times when he will make a seemingly random remark (as usual taken from a movie) at the most inopportune time (not unlike the McDonald’s episode).  OK, ok……I’ll elaborate.       

One day after school R & I were standing in the checkout line at the grocery store.  He was getting a bit agitated as he was anxious to get home.  I was trying to talk him through it (my first mistake).  Keep it short and simple right?  Since I didn’t…he decided that this was the perfect time to “use his words” and tell me exactly how he was feeling.  Now I know he meant to say he was feeling impatient and wanted to go home but it came out as “Shut up you stupid lady!  That’s a stupid idea!” 

Now I’m sure I’m not the only parent out there with a child with autism, or any other disability for that matter, who wouldn’t just love to get inside their child’s head to see what and how they think.  Since that’s not possible, I have to come to my own conclusions and there are times when I can be waaaay out in left field.  The fact that I’ve lived with R all his life and can still get it wrong…it’s not surprising that he can be misunderstood by others.  As for the more known form of OCD (Obsessive-Compulsive Disorder)…yea, we’re pretty sure R has that too. 

Think about it...D