Creating Total Communication for Elias!

As you know we have been working with Elias to develop a total communication system because of his hearing loss and limited response to amplification. It has been quite a process that has involved 3 audiologists, 2 speech therapists, 2 occupational therapists, 1 assistive technology therapist, 1 aural rehab specialist and 2 doctors –ENT & Developmental Pediatrician. All of these 11 individuals had a different role necessary to create a system that will enable Elias to effectively communicate through various means and methods. It has taken more than a year with this enormous team to finally achieve some success.

What is total communication? This is a system that incorporates various modes of communication. Sign Language, auditory Language, picture exchange, and assistive technology –use of computers, switches & other various devices. We have been steadily working on each of these components to develop Elias’ total communication process. At times this process has been frustrating for all involved, including Elias! With so many hands in the cookie jar and nothing to facilitate bringing them all together there were differing interpretations and implementations of strategies. Some of these were contradictory and went undetected for some time. Reflecting back that has had both positive and negative effects. The positive effects were that tools were given to Elias, but at potentially inappropriate times. Putting the cart before the horse is you will. It was prudent and appropriate when focused on isolated roles, but putting the big picture together it did not always fit. Eventually, these tools would become appropriate. It was just making him understand that he already knew this, it was just being used in a different context from what he was used to. While this is seen in many areas of development with communication it was making things harder for us often times confusing him to a point we would have to regress to build it back in appropriately.

The past few weeks there has been a very assertive drive for getting him to understand the intent with picture exchange. This is going to be the most significant and useful source for him to build vocabulary and consistent coherent communication. Then the other elements can begin to really expand giving him more options. This week Elias has proven that he has that intent skill mastered. His two biggest motivators are bubbles and swing. He consistently will request these when we stop the activity. He does this by picking up a picture – in these cases of bubbles or his swing. He then hands us the picture which tells us he wants this or desires more. When he refuses to hand it to us the activity is all done and stopped. Now at times his refusal is legit and he is truly finished. At times though he is just asserting himself and his will to be in control. This was a great step as we have broken through the first huge barrier. Now that this skill is in place we can begin to work on expanding his vocabulary. This concept is much like you would with a child with normal hearing. The difference for us is we will be using appropriate corresponding pictures to teach him versus the verbal reinforcement. For example, when a child picks up a book we say, “oh you have a book. Do you want to read a book?” Parents reinforce the word over and over. For Elias we will do the same but show the picture and sign as well. We will trade the card for the book and ask him to return the card by placing our hand out. When he gives it to us we return the book reinforcing the intent skill and teaching him this picture means book. After he demonstrates this through repetition we will then place a choice of 2 pictures. One being the book and another, say a ball. The hope is Elias will see the physical book and choose that photo. Again repeated demonstration of correctly choosing defines an additional vocabulary word. Should he choose the ball picture then he will get the ball instead. Not being what he wants we hope to train him to understand that using the appropriate picture is vital to communicating what he wants.

There have been some interesting lessons from this process so far. One of which is as a parent advocate you have to be very open to identify potential conflict in strategies. Easier said than done, after all we are not the experts. That is the reason these individuals are working with him. It is also fair to say that everyone did their job appropriately and well. They were focused, as they should, on their particular element and had very little knowledge of what the others were doing. Certainly it is difficult to work within the confines of a team that large for one specific issue without the luxury of communicating with each other. This is still a long process, much like his hearing will be, but breaking through this hurdle was huge. The timing is especially great as we transition in the coming weeks to 2 new speech therapists. Being at a new starting point hopefully will make that transition easier. Two more new schools of thought could have been rough in trying to get that skill to emerge. We feel this gives us a fresh slate with a new focus that should help keep this rolling in a positive direction. We are proud of Elias and all that he is accomplishing. He is a bright little guy with the desire to learn – as long as it is on his terms (Hahaha).