"I Have Something To Say"

I have been working with a non-verbal 6-year-old, "Emmitt", for a few months now.  He has no means of functional communication.  Emmitt's primary method of communicating is through behaviors such as crying, vocalizing, biting, hitting, and pinching.  Cognitive, medical, sensory, motor, and communication impairments significantly impact his ability to independently navigate his world.  But he clearly has wants, needs, thoughts, and feelings to share.  Emmitt is an emerging communicator.

"Andy" is a newly minted middle-schooler with whom I have been working for a few years.  She is non-verbal and has a constellation of impairments including medical, physical, cognitive, vision, and sensory that have resulted in significant challenging behaviors such as self-injury, hitting, biting, pinching, crying, screaming, throwing, grabbing, and more.  When we first started working together, she had no means of functional communication.  She had no control over her life, and no way to share her wants, needs, thoughts, and feelings.  Andy was an emerging communicator.

"Shannon" is a high-schooler who has been coming to see me for a few years.  He is non-verbal and had no means of functional communication when I first started working with him.  His challenging behaviors have become so significant that he has qualified for special intensive in-home behavior support services.  In addition to self-injurious behaviors and aggressive/assaultive behaviors, he engages in property destruction (e.g. broken windows, holes in walls, etc.) and elopement.  Because he had no way to communicate, he had learned to push and fight his way to try to get his wants and needs met. Shannon was an emerging communicator.

When emerging communicators are toddlers and preschoolers we generally do not have significant maladaptive and non-functional communication behaviors that need to be worked through.  Once emerging communicators are in elementary school and beyond, years of frustration and deeply ingrained behavioral "habits" have developed.  So not only do we need to determine and teach a functional communication system, we first need to convince them that this new proposed way of communicating is worth it and will not only work, but work better (in that they will have the ability to communicate so much more). 

Often times we need to take a step back and first teach an appropriate way to initiate communication and engagement.  To teach them how to appropriately enter into an interaction.  And often this means changing the habits of both child and caregivers. 

Several years ago I was lucky enough to attend a PODD training by Linda Burkhart.  It was intense and amazing!  While I appreciate the information and training on PODD, I came away with a little tid-bit that has completely changed my approach to these older emerging communicators.  The idea of "I have something to say!"  Linda talked about children who require partner-assisted scanning (the child is not physically able to independently access their communication system to communicate).  She pointed out that we need to develop a consistent means for the child to indicate that (s)he has something to communicate and the communication partner needs to get the book and start partner-scanning.  One example was a wristband on the child's arm that (s)he could raise/waive to start the communication process. 

For many of the children I work with, it is behavioral challenges, not physical, that act as a barrier to functional communication.  But the underlying principle is the same.  They need an appropriate way to alert communication partners to "hey, I want to tell you something!" 

This is huge!  And depending upon the intensity of behaviors and how deeply formed the "habit" of using behavior to communicate, just this step is a lot of work and time.  That can be hard.  Hard to realize the level of work being targeted.  Hard to realize the effort required from the child (and caregivers).  Hard to wait to address more sophisticated communication (particularly when we can see the child's potential for more).  But it is so important!  And so worth it.

We need to ensure that every child has a way to functionally start the communicative process; to appropriately enter into interactions with others.  Whether it is a wristband on an arm they wave, a single message voice output device they activate, or a picture communication symbol they exchange with their communication partner, we need to give them an alternative to behavior to get our attention.  Only then can we really develop appropriate and functional communication.