"She talks with her eyes"

"Not being able to talk
is not the same
as not having anything to say."
                       Unknown

One of the biggest challenges my daughter faces is being unable to speak. She has thoughts, wishes, dreams, needs, frustrations...but she cannot tell them in words. Because of motor issues that prevent her from using her hands for gesturing or sign language, she has only her eyes and her facial expressions to make herself understood.


Her silence lead me to dig deep into the world of Augmentative and Alternative Communication (AAC). I feel so blessed to have been trained in Special Education because it provided some excellent resources. One of those was the mindset that "if something doesn't work, look for another way."


Over the next few days, I'd like to share rewrites of some posts I've contributed to professional AAC and AT (Assistive Technology) listservs. I think the messages they carry are critical for all children who rely on their eyes to communicate.


Below is a rewrite of an entry I wrote on May 29, 2008 for the Rett Girls AT Ning on the "Principles of Communication." [Side note:  As some of you are aware, while Ning.com has generously grandfathered educational groups under their free use policy, they have otherwise switched from being a free forum to a paid service. When a well-respected service such a Ning switches over from free to fee, I get a bit nervous that information will become difficult to uncover. One reason for reposting is to keep this information available to anyone who might benefit from it. Keep your fingers crossed that Blogger.com will continue providing its services free of charge!]


Here are some very basic principles on non-verbal communication. We have found them to be really important for our daughter before ANY assistive technology interventions can be successful. This isn't an exhaustive list at all, so I hope others will add from your experiences! I wish I had more time at the moment for a longer list and great detail...sorry!

1)  Presume competence. Children with motor apraxia issues face enormous challenges and it's really difficult for them to show what they know. Insist that others speak respectfully to the kids as well. Insure they are surrounded by opportunities for receptive input. What slips out in the way of knowledge at the most unexpected times can be amazing.

2)  Hold high expectations. Kids sense this and will work harder for people who convey belief than they will for those who convey doubt. Children are also highly perceptive of times when people expect little or nothing from them. This is exactly what they will hand back.

3)  When you are communicating, CONVERSE, don’t “test!!!” Take answers at face value. If the answer doesn’t make sense or you think the child is fixing to one side, rephrase your question to require a different response from an answer on the other side. Let her know YOU are the one having difficulty understanding what she means by her answers. Just don’t keep hammering the same question. Boredom from repetition can be a problem. It's ok to "test" when you ARE evaluating, but remember not to let conversation digress into tests.

4)  Maintain consistent placement of answer choices. This leads to motor learning. Try to place them in the same order left to right as you speak, to reinforce reading direction. So, if you consistently ask "Do you need more time or are you all done?," then put “more” on the child’s left and “all done” on her right. If the child works with a variety of staff during the day, it may help to mount choices permanently on choice strips so everyone is presenting choices with consistent placement.

5)  If personal connection to others is a higher priority to the girl than giving a response (hmmm, wonder where I learned about this one! Does it sound familiar?), it helps to have loose symbol cards that can be held side-by-side to block the view of your face. This may encourage her to look at the response; as you slowly pull the cards apart, her eyes may follow the intended symbol card. Children who are capable of finger pointing may respond more easily if cards are laid on a table to get them out of line with the speaker's face.

6)  Inconsistency is the one consistency girls with Rett syndrome--and some other neurological disorders--have. Many factors, both visible and internal, can be at play without our awareness. Children may be capable of selecting from 8 choices one day and only 2 the next, so be flexible. While we we want to set up to encourage a variety of response modes, such as pointing or hitting switches, a child may not be capable of that physical action on a given day. If that is the case, remember that eye pointing is still a valid form of response.

7)  I must underscore that physical discomfort will interfere very much with communication. For girls with Rett syndrome, it is often gastrointestinal, but there are many other sources. It's really tough--and frustrating!--for the girls to pinpoint and communicate what exactly is hurting them during the pain episode, but they may be able to do so after the pain is relieved. With repeated practice and shortening the time between the episode and the questioning, the girl may learn to communicate about the pain while it is happening. She may also be more adept at communicating what will relieve the pain than to talk about the specific pain itself, so as is age-appropriate, talk about the treatments and medications she receives in connection with her discomforts. At age 14 now, our daughter has a high degree of participation in relieving her miseries and she is right about it every time! Keep in mind we only offer things that could not hurt her if she misjudges (an air venting air, an orthotics check, a heating pad, Advil, Tylenol), not prescription meds.

The more we demonstrate trust that our children are communicating meaning to us, the more trust they will have that we are worthwhile listeners. Can you imagine how overwhelmingly frustrating it must be to muster all your energy into responding to a question, only to have your answer overlooked or dismissed? If that happens too often, anyone would withdraw their trust. If we want honest, reciprocal communication, we have to trust our children...so they can trust us.

--Rose-Marie

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Additional information like this can be found here:

Eye Gaze Techniques

Getting Ready for Non-Verbal Communication

Materials for Non-Verbal Communication, Part One

Materials for Non-Verbal Communication, Part Two