Principles of communication

[Rose-Marie Gallagher]

These are really basic principles, but we have found them to be really important for our daughter before ANY AT 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!

Assume competence. The motor apraxia issues the girls face is enormous and it's really difficult for them to show what they know. Insist that others speak respectfully to the girls 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.

Hold high expectations. Kids sense this and will work harder for people who convey belief than they will for those who convey doubt.

When you are communicating, CONVERSE, don’t “test!!!” Take answers at face value. If the answer doesn’t make sense or you think the girl 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.

Also, 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 offer the continuer phrase first followed by the cessation phrase, 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.

If personal connection to others is a higher priority to the girl than giving a response (hmmm, wonder where I learned about this one!), 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.

Inconsistency is the one consistency our girls have. They may be capable of selecting from 8 choices one day and only 2 the next, so be flexible. As Faith pointed out, hand use may or may not be a response mode at times, although we want to set up to encourage it.

There is a good file someone had posted on the Ning that speaks to some of the challenges faced by girls with Rett. I must underscore that physical discomfort will interfere very much with communication. 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 12 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 (venting air, checking orthotics, Advil, Tylenol), no prescription meds.

I'm working on a list of low- and mid-tech strategies but it's slow coming with everything involved in winding down the school year. These so-basic prinicples are so critical a foundation to any interventions that I thought I would go ahead and put them out before I go on with the tech strategies.

[Faith Paradis]

Rose-Marie,
I just read through your post a few times! Powerful information! My mantra is also assume competence! I find so often with all kids with disabilities people tend to want proof where we do not expect typically developing kids to prove themselves all day long.

I was just talking to one of my friends who is a speech path about the profound apraxia we see in our student who has Rett yet we both think she knows soooo much and is trying to tell us these things.

This was great information for all of us that you shared.
Faith

[Lisa Jenkins]

Rose Marie,
This is such a wonderful resource for those of us who teach girls with Retts. I've already learned something very valuable just from this one post. I hope to put it into practice on Monday with my student. It's great to have a place where others who have had similar experiences can provide insight and suggestions. Thanks!
Lisa

[Rose-Marie Gallagher]

Low-Tech Strategies for Communication: Eye Gaze

Here are some thoughts on low-tech strategies for eye gaze. These aren’t based out of research, because so often what Rett families and therapists find is that our kids defy the recommendations that work with other populations. This is strictly based on observations across a number of girls with Rett syndrome…your mileage may vary!!!

Eye gaze or nose pointing are effective means of communicating responses for many kids with Rett syndrome. Others may have some residual purposeful hand use that allows for pointing or activating switches. Some children switch between response modes depending on the abilities they have on any given day. Factors like illness, seizures, fatigue, and such will determine the preferred response mode. There are things we can do to promote success in each of these modes of communication.

Opinions about eye gaze techniques vary among professionals. The MOST important thing is to find a system that works for the individual. Here are some issues to consider:

1. Will the child be required to visually scan all choices before a selection will be accepted? Or does the child employ peripheral vision or memorized symbol placement, making scanning of familiar displays unnecessary?

2. What constitutes a “selection?” Will it be gaze held to an item/symbol for a specified amount of time? Will it be confirmation with eye contact after an item is indicated? Will high-tech eye gaze technologies be in the child’s future, and if so, how can today’s skills help develop those that will be needed to navigate that technology (ie: working to develop a fairly consistent length of gaze to which dwell time can be calibrated)?

I considered suggesting that the response mode be applied consistently across communication situations and partners, until I realized how often with my own daughter we adjust for the situation. Perhaps we have done her a disservice to allow such variety, yet it makes our communication exchanges more spontaneous and natural. After all, that's the way those of us without physical impairments communicate together. For example, my daughter never scans simple displays she has memorized, as her motor memory is a strength. To expect a scan at this time guarantees that communication will break down—and quickly. However, she will scan novel sets of choices several times before settling on a response. She has become adept at making quick (<0.5-1.0 second), deliberate responses that are easy to interpret. Especially with familiar, preferred partners, confirmation comes as direct eye contact with facial expressions. Sometimes she confirms by holding her gaze for an extended period (for her, this is 3-5 seconds), particularly when she is communicating with an unfamiliar partner. So while consistent behaviors from communication partners are important for emerging eye gaze communicators, it is critical to follow the child’s lead.

The symbols used by kids to indicate their responses needs to be considered too. Some kids require actual objects, although I’m not personally familiar with any girls with Rett currently using only concrete objects. Some may need photographs, some may use line drawings. We started right off with Mayer-Johnson BoardMaker symbols with no need to go through the entire hierarchy of symbolic prompts; it worked just fine. Photographs actually hinder reponses from my own daughter, as she tends to get side-tracked studying the detail in them rather than concentrating on the communication at hand.

Symbols need to be large enough to be clearly seen and should always have a label, preferably above the picture. This insures that all communication partners understand the meaning of the symbols being used. Research does not support the use of pictures to teach reading, but…pairing labels with symbols may help reinforce the concept that words carry meaning and may result in learning some sight words. Because some girls have eye-motor control issues, you may have to experiment with symbol size. Some will do better with larger symbols.

It needs to be decided if symbols will be part of a static board or loose. I prefer loose symbols on many accounts, as they permit unique parings not possible with static boards. In fact, this can be a good strategy for teaching a new symbol. For example, you might present the known “applesauce” with “all done.” Eventually, the child will get full and not want any more applesauce, and might make the connection that “all done” is a more appropriate way of refusing more applesauce than pushing the spoon away.

Loose symbols also give you more leeway on placement. There may be days they need to be very far apart (“sloppy gaze” days when it’s hard to read the eyes) or very close together (requiring less head movement). We have issues where the communication partner is more motivating to look at than the choices, and loose symbols allow us to block the view of the distracting face. By putting symbols side by side in front of the partner’s face and then pulling them slowly apart, the eyes may follow.

That said, it is still critical that symbols in frequent pairings be placed consistently on the right and left so the child can develop motor memory of the set. If “yes” is on her left, it should always be on her left; “no” should be on the right…always.

Another challenge with static boards is that it can be difficult for the partner to tell just which item the child is looking at. Over time and with practice, it's possible to place items closer together, but you may need to start out with items on a board spaced fairly far apart.

I am eager to hear what others have found with eye gaze in low-tech situations. It’s really nice to be able to learn from others and to hear how you find things to be similar or different. As time permits, I’m happy to share about low-tech communication strategies using the hands…a bigger challenge at our house. We almost always default to eye gaze here.

Faith and Lisa, I appreciate your kind words.

Rose-Marie

[Glenda Anderson]

Rose-Marie, did you ever develop that list of low- and mid-tech strategies? I sure could use it right about now.

[Rose-Marie Gallagher]

Glenda, I apologize that I haven't done this. It is the topic for next summer's workshop at our Northwest Rett conference. Our family is in the middle of a move to another town and homeschooling for the first time (school was FABULOUS, but we needed the flexibility to flow with the current goofy real estate market) and I just have been up to my eyeballs in all this busyness and boxes. I will think about your question as I'm packing and try to post ideas as they come rather than waiting to put them into a list, if that would help.
Rose-Marie

[Glenda Anderson]

Would love your input! But only between boxes, not in place of...