I.                    Basic Assumptions

1.      Girls with Rett Syndrome (RS) use a variety of ways to communicate, but they may be very subtle-parents know a lot them.

2.      Make use of every bit of body language.

3.      Our girls with RS understand much more than they are able to express,  though their abilities in this area, as in others, vary greatly.  Remember that abilities in one area do not necessarily reflect those in another area.

4.      Expressive communication needs to be functional and worth the effort or it won’t be used.

5.      Many different methods (eyes, gestures, voice output device) can be used to augment each other, so use what works the best, and don’t try to replace what is already working with something new or harder.

6.      Make movements for communication methods as easy as possible, so she can  concentrate on telling you something, rather than on the movement required.

7.      Auditory processing may be delayed, and output further delayed while she processes movements of any body part, even eyegaze. 

8.      If she seems to be falling asleep, not attending, look at her interest in the subject matter first.  She often does not want to repeat something once she has demonstrated that she can do it, and she may be bored or frustrated.

9.      Adding in music may really help with both receptive and expressive communication.

10.  Work toward literacy.  Many girls can learn to read at least some words and do simple math.  Some seem to be functioning very near their age level in elementary school.

11.  Her communication is limited more by what we can provide than by her potential (for example having a limited vocabulary to choose from).


II.                 Places to begin

1.      “Yes-no”, “I don’t know”, “None”

2.       Simple choice making

·        She can easily learn to choose between her favorite videos or music.

·        If you’re not sure she is really making a choice, try one thing she really likes and another that is neutral (i.e. music vs. pants).

3.      Eyegaze

·        Eye contact may be very good, with a special quality to that “Rett stare”, or may be poorer and more autistic-like.

·        She may not be able to use vision together with auditory or movement.

·        Even eye movements can be difficult, so she may need to dwell on her choice, rather than look at the picture, then her communication partner.

·        Carefully observe the maximum number of choices she can handle, making sure the subject is of interest.

·        Watch for use of eyegaze beyond pictures, to you or the real object, and as cues for her mood, or attention level.

·        Use a flashlight on her head if  possible.

·        Parents are beginning to use devices like the Headmouse with a DynaVox or computer.

4.      Hand use

·        Splinting may help

·        See if she can point in any way and how big the target needs to be

5.      Schedule boards

·        For organization, not expressive communication

·        Help with transitions

·        Can be very simple and use objects or more complex using symbols

6.      Picture Exchange Communication System

·        She hands picture to communication partner and gets what is on it

·        Very concrete and clear

·        Can use eyegaze and adult helping with the exchange, along with other adaptations

·        Little emphasis on social exchanges and other important communications


III.       Voice Output Communication Devices

1.      Switches and simple devices to use for communication

·        Girls who are ambulatory seem to do well with switches placed strategically around their home or classroom, NOT JUST ONE.

·        Use a switch on any body part that works, chin switch, etc.

·        Make use of them for greetings, circle time, messages to another classroom and with books.

·        Some come with the ability to program a series of phrases

·        Move on from single switches as quickly as possible, but do not limit her to one single level device with only one theme available.

·        Single level devices can be combined with other more complex, but less portable devices for quick exchanges

2.      Multilevel Devices

·        Move here as soon as possible, since she may be able to handle only a few pictures at a time, but needs them in a variety of settings.

·        Make them activity specific, not general for the day.

3.      Computer-like devices

·        Use mostly a synthesized voice, but can record special things on most

·        Almost infinite vocabulary and possibilities, with no paper overlays

·        Some girls can handle these devices, which allow for a variety of subjects with a few pictures in each, so don’t hold them back due to cognitive expectations.

·        Direct access is best, but it is possible to use other methods of access




4.      Remember the vocabulary

·        What does she want or like the most?

·        What is available to her at that moment? (for example: going home may not be an option)

·        Better to make it specific rather than to only use broad information such as lunch, bathroom, and music.

·        If she can access only one message at a time, put short phrases on each one.  If she can access several at a time, start to putting a few words on each, which lets her combine them to make her own phrases.

·        EXAMPLES:

1.  During therapy time: ‘Pick me up”, “Swing me around”, “Bounce me on the big ball”, “Rub my feet”

             2.  For the VCR pictures of 2 choices of tapes, “Put it in the VCR”, “Turn it on”, “That’s my favorite”, “I don’t like that one”

             3.  What hurts: Use pictures of any parts of the body which tend to hurt   her, maybe starting with head, stomach and feet.  You can then use “yes/no” to get more specific as you touch parts in the area she choos­es and ask if each hurts.

             4.  Circle time: “I’m here!”; “It’s raining today”; “My turn”’; “Let’s sing (favorite song)”

5.      Social: “Hi my name’s ______, what’s yours?”; “How’s it going’?”, “Come talk to me”; “Have a good one”; “See ya later”; “He’s cute!”

6.      Scripted:  Tell a joke;  Give directions to class;  Give a short report

7.      More scripts:   “Guess what I did on Saturday!” ; “I went skiing”;  “I think I saw you there”;  “What was your favorite run”

8.      “Did you see movie, TV show?” ;  “I thought it was scary”;  “What was your favorite part”;  “Tell me more”

9.      Take messages to other teachers or office and use device to say “I brought you this message”;  “Thanks a lot”;  “Have a great day”

10.  Use her device with a book, either telling one repeat phrase throughout the book, or telling something brief from each page (reading it)