Rett Syndrome: Language Without Speech
All material Copyright© 2008-2010 International Rett Syndrome Foundation
This is a collection of 4 articles which are reprinted with the express permission of International Rett Syndrome Foundation (IRSF) as originally on their Website.
In many respects, we share her handicap. We may find it more difficult to understand her than for her to understand us!
When we speak to her, we can change our pitch or tone of voice to aid our expression. But, we may not know how to interpret her behavior, emotional expressions, body language and facial expressions.
Choosing appropriate vocabulary can sometimes seem more difficult than choosing a communication method. She will not be interested in using the device or method unless it contains vocabulary which is motivating and functional for her, and which she cannot communicate more easily in another manner. Stay away from using only words like “lunch”, “bathroom” and “music.” Make sure that anything available for her to choose can be acquired immediately. For example, placing “bus” on her device, which is only available at the end of the day, is useless at any other time. However, if going for a short walk is an option throughout the day, it might be more useful. It is best to start with specific activities, especially if the number of messages are limited. Sometimes simple talkers or communication boards can be set up in several places around the classroom or house, to be available for different activities. There is no reason she must be limited to having only a single talker available.
Pictures can be photos, magazine cut-outs, flash cards, or labels from favorite foods or music. In addition, there are computer programs such as Boardmaker, which can be used to generate pictures or icons. These days you can also scan in pictures to print off your computer.
Often teachers and therapists limit the number of choices based on how many pictures can be grouped together for a girl to identify one receptively. Just because she can deal with only two or three pictures at a time during an activity does not mean it is the maximum she should have on her communication system. When using the pictures is motivating she may be able to deal with a larger grouping for expressing herself. Generally, use of a system starts with pictures or icons (symbols) which contain complete messages, for example, “Blow more bubbles” and a picture of the bubbles jar. Later, depending on her coordination and abilities, it may be possible to separate out words so that she can build her own sentences. This works well on the more complex computer-like devices. She may also be able to go from screen to screen changing themes herself on these devices. You may have certain messages, such as “yes/no” or I’m done”, which go in the same place on every page or screen.
Here are some examples of vocabulary for talkers, communication boards, and eye gaze boards:
- During therapy time: “Pick me up,” “Swing me around,” “Bounce me on the big ball,” “Rub my feet”
- 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.”
- What hurts: place pictures of any parts of the body which tend to hurt her, maybe starting with head, stomach and feet, then using “yes/no” to get more specific as you touch parts in the area she chooses and ask if each hurts.
- Circle time: “I am here!,” “It’s raining today,” “My turn,” “Let’s sing my favorite song.”
- 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.”
Developing Choice Making Skills
The opportunity to make active choices can mean the difference between becoming a passive or active participant within her world. If she is not given enough opportunity to interact as independently as possible, she may just sit back and watch the world go by, depending completely on others to decide for her. If she has a reasonable means to communicate, she will be reinforced by the communication itself and will be more willing to keep on trying.
Following are some ways to assist her in choice-making:
- Make sure the choices involve objects, people, or activities that are motivating and desirable to her, and that are available when the choice is made. Determine the method of making the choice which requires the least effort and time on her part. You want her energy to go into communicating, not improving her motor skills. Always give her plenty of time to respond, and be aware that she may need to gear her body up with other movements to get started.
- When beginning, offer her only two choices at a time. As her clarity and skills improve you can increase the number of choices to as many as she can handle at a time, usually 3-4. Make sure to show her you understood her choice by naming it and providing it immediately. For example, “Oh, you want the music. Here it is!” Each successful communication will lead to more motivation to communicate again.
- You can start by offering her only choices of things you expect her to want. If her choice making seems random, you can try pairing something she really likes with something neutral, such as a Barney tape with a pair of pants. Remember, she gets what she chooses, so she will learn quickly to choose her favorite.
- Determine whether she can recognize pictures, and how realistic they need to be, starting with familiar photos as most concrete, and moving to line drawings as most abstract. If pictures are difficult for her, use real objects, miniatures, or parts of objects, such as a rope to signify her swing. You can then pair the picture with the object and eventually fade out use of the object.
- She may require some extra cues at first. For example, you can hold or point to the choice on the left while naming it, then do the same with the one on the right. You can cue visually by shining a flashlight on each picture or moving your finger toward it to help her eyes track and to draw her attention. You can use auditory signals such as tapping each picture or snapping your fingers to remind her to look. Physical cues include hand-over-hand assistance to help her touch a desired choice, nudging her elbow toward a choice, or gently touching her face to help her turn toward a choice.
- You may be able to fade out cues, then need to increase them again when introducing new concepts. Having pictures available during ongoing activities may help to introduce her to them before she must make active choices.
- If she will not make a choice, try changing to something else which may be more motivating. If you are pretty sure she wants one of the choices, try making it clear that she must communicate first. For example, “First show me which you want, then you can have the coke or cookie.”
- Remember that if she is not used to making choices it can be very tiring for her at first. She may also wonder why you suddenly cannot anticipate her needs. She may also take the choices a step further than you expect.
Choosing vocabulary is important. It may help to make a schedule of daily activities, such as eating, tooth brushing, dressing, group activities, free time, television. Determine possibilities for choice-making within each activity. For example, choosing which article of clothing to take off next at night. Remember to include fun actions and social comments, not just objects. Many people start with “yes” and “no” for the first choices. For some girls this works well, but for others, use of more concrete choices is better. Think of typical toddlers and their first words. “No” comes pretty early, but it follows other social words and requests.
Music as Communication
The girl with Rett syndrome is usually very sensitive to music, and enjoys the quality of the sound. Music therapy is a very motivating channel for communication. On receptive level, she enjoys listening. On an interactive level, she can use the music to express her emotions and communicate her knowledge and choices. The therapist will acknowledge her feelings and she gains confidence as she learns that she can participate and succeed. Musical activities also provide opportunities for her to initiate hand movements and improve skills. The musical activity must be meaningful and interesting for her to build opportunities. Delayed reactions are common in Rett syndrome, but when music is used, the delay is considerably reduced. Music therapy can provide ways in which communication can develop and learning can be enhanced.
Goals of Music Therapy include:
- Maintain and maximize function
- Increase the level of awareness
- Increase responsiveness level
- Increase communication
- Increase purposeful hand use
- Elicit vocalization
- Increase focusing, attention and eye contact
- Provide opportunities in choice making
- Relaxation and calm
- Pure fun and enjoyment
Featured Organization: International Rett Syndrome Foundation (IRSF)
The core mission of the International Rett Syndrome Foundation is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.
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