Congenital Deafblindness

Communicating

The focus of this section is Human Communication, when two or more people, send, receive and exchange information, through such means as speech, gestures, facial expressions, body language, tone of voice, other sounds made with the voice (vocalisations) and various types of sign, written and picture languages.

When asked about how their child communicates, many parents and carers would immediately think about whether their child has started talking yet and what words their child can say. While speech may be a communication option for some people who are congenitally deafblind, there are a host of other options for developing interaction, communication and language skills with those for whom speech may not develop, is very limited or difficult to understand.

Speech, in a person with typical hearing, sight, muscles and movement, seems to “just happen”. By being around others who speak, they too usually acquire the skill and learn to talk and learn the language that others speak to them. Communication for a person who is congenitally deafblind  is less likely to “just happen”. It needs to be specifically taught and requires more time and effort. Parents and carers may need to learn new methods of communication.

Outlined below are brief descriptions of different communication methods used by people born deafblind or become deafblind before developing language. See “Communication” in the “Congenital Deafblindness For Professionals” for a more detailed explanation of these methods and circumstances in which they may be recommended.

Speech

It can be difficult to predict who will develop speech and when. As a person develops the effect of their hearing and vision levels, muscle movements and co-ordination, the cause of deafblindness and function of other systems of the body, on their speech and language development will become more apparent. Other methods of communication may be suggested, to use in conjunction with speech or as an alternative to speech. These would be recommended to develop or enhance communication, if the potential for communication is seen to be greater than if speech only were used.

Sign Language

In Australia, Auslan is the official language of the Deaf community. Other countries have their own languages of the deaf. For example in the United Kingdom BSL or British Sign Language is used, in the United States its ASL, American Sign Language. Each language has its own signs and grammar. Sign language is a language where meaning is conveyed through formations and movements of the fingers, hands and arms combined with facial expression. Usually, no speech accompanies the signs.  Some may also silently mouth the spoken equivalent of the message as they sign. Learning Auslan (or the recognised sign language of your country) may be recommended if hearing levels mean that hearing speech is impossible or may be possible with the help of lip reading, but is difficult and exhausting. It would be a method of choice if hearing levels indicated it and vision was adequate to see the signs. Muscle control and movement abilities may also be taken into consideration. To accommodate reduced vision,  the movement of signs may be reduced or simplified, signing may be within closer range of the person who is deafblind and consideration is given to lighting and the clothing colour worn by the individual signing to the person who is deafblind. These modifications can increase the visibility of the signs for some.

Modified Signing Systems

These signing systems borrow some of the hand signs from Auslan (or the native sign language of the country or region you are in) or may use some signs unique to that system. They are simplified as they do not follow the grammatical rules of Auslan (or if in another country, the recognised sign language of that country). The main words of a message are signed as the sentence or message is spoken. The person who is deafblind may use the signs to help them understand the speech. Some may also use signs or signs and speech to communicate back.

Some examples of modified signing systems are Key Word Sign, Makaton and Signed English. Natural gesture, such as waving hello and goodbye, pointing, waving arms to show excitement, using a “stop sign” hand to say “wait” or “no”,  may even be included in this group. Use of natural gesture may be used as a bridge to learning more signing. Again modifications for reduced vision, as in Auslan may be required.

Tactile Forms of Signing

Tactile methods of signing involve signing while in physical contact with or touching the person who is deafblind. This is done so they can feel the sign. Where in space or where on the body the sign is made, the shape of the hand and fingers and the movement of the sign can be unique to each person. It adds information to what they see or is an alternative to seeing the sign. There are several ways signs can be made tactile. These methods, when used with someone who is congenitally deafblind may be different to and simpler than tactile methods used with someone with acquired deafblindness. With the latter group, tactile signing methods are usually referred to using just the term “Tactile” e.g. John uses Tactile.

These systems are generally developed for the individual rather than using the same sign for everyone. This is because individuals recognise, tolerate and understand touch differently and have different communication needs. Making a record of tactile signs used with an individual, by writing descriptions and taking photos and video is a great start to ensure everyone is communicating the same messages in the same way.

Types of signs combined with touch for people who are congenitally deafblind include:-

  • Body signs - signs are made onto the body of the person who is deafblind
  • Hand under Hand  - the person who is congenitally deafblind  places their hands over the hands of the person signing to them, feels the shape of the hand and the movement of the sign, they are free to pull their hands away when they wish
  • Co-active signing  - the hands of the person who is congenitally deafblind are manipulated into the hand shape or movement of the sign
  • Touch Cues – while not recognised as a signing system as such, is a frequently used method of touching the body or around the body so that the person who is congenitally deafblind will feel direct touch, vibration or movement of air on their body. Each type of touch cue has a different meaning and are generally used to let the person who is congenitally deafblind know what is about to happen or to give instructions. For example:-
    • “I’m going to move your wheelchair now” might be communicated through  three quick taps on the armrest of the wheelchair
    • “Stop” might be communicated by resting and open hand on the shoulder
    • “Time for a nappy change” might be communicated through using a two finger, double tap with both hands onto the area where the nappy tabs open and close the nappy

Other forms of AAC (Augmentative and Alternative Communication)

Augmentative and Alternative Communication, (AAC) is a term that describes all forms of communication, except speech, that are used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write. Modified and tactile signing systems are types of AAC as are:-

  • Object symbols, tangible symbols, object cues, objects of reference

These are all terms for using an object or part of an object to represent a particular activity, event or person. For example a person who is deafblind  may use a cup to show that they want a drink. Other people may use this cup symbol to ask the person if they want a drink. Someone may wear a pendant of a particular colour and texture. This unique pendant makes them easily identifiable to the person who is deafblind. The pendant is an object symbol.

  • Pictures & Photos can be used to represent words or simple messages. Using several photos or pictures together, creates specific messages and sentences. Careful consideration of the person’s vision and the layout, detail, colour contrasts and size and the person’s vision is required.
  • Communication devices, Speech Generating Devices, Voice Output Communication Aids

These are all names for electronic machines that can produce digital speech or pre-recorded speech at the push of a button. Words or messages can be spoken  by the machine when particular symbols (often, but not always, pictures) or combinations of symbols are pressed or chosen. They range from single button, single message machines to complex displays with touch screens and thousands of words.

Picture of boy and physiotherapist using object symbol & picture symbol to communicate
 
 
Using object symbol & picture symbol a boy and his physiotherapist communicate about what they are going to do next. Note the use of an enlarged picture symbol in a strong bold colour, shown against a plain background and at close range.
Communication device displaying objects and picture symbols
 
A Choice 4 communication device with object and picture symbols, also has increased illumination when buttons are pressed. Other lights activate to indicate the symbol chosen by the user. The device  has been set up for a child to request a song.

Naturally Occurring Communicative Behaviours

These include body language, facial expressions and vocalisations (making sounds with your voice, like crying, laughing, babble sounds, moans and squeals). We all use these, probably much more than we realise. So too do the people who are congenitally deafblind. Some will use them to give you a specific message. They want to let you know what they’re thinking. Others will use them without specific intent to tell you something. The behaviours are communicative because others can interpret them as meaning something specific. (He’s pulling his ear and whimpering again, he must have a sore ear).

When a person’s actions, body language, facial expression and vocalisations combine in a specific way, often in a way that is not particularly common in the hearing and seeing world, they are often termed “a behaviour”. Understanding why these behaviours occur, what they mean and how to respond is important to positive and rewarding interaction for all.

When communication is limited between a person who is congenitally deafblind and another person, doing familiar things in the same way helps develop understanding and acceptance.

The person who is congenitally deafblind  becomes familiar with what is happening to them and knows what the outcome of the routine will be, they can feel safe about what is happening to them and around them.

Respectful approach

Whatever the means of communication a person who is congenitally deafblind uses, thought needs to be given for approaching and initiating the interaction  or communicating with them, as they may not hear or see enough to notice that you are there. Your seemingly sudden appearance or actions can startle or overwhelm them. Here are some tips to consider for most people, but individual differences will occur.

  • Approach from the front where you are most likely to be noticed, to be seen and/or heard to some degree.
  • Say their name. If they can hear this, this will help them know you are there for them and you want their attention.
  • Introduce yourself using your name.  If you have one, offer your personal object symbol or sign that can be seen or felt, under the hand or on the arm or shoulder of the person who is congenitally deafblind. They can use these things to help recognise you.
  • They may need time to take it in, time to understand and time to react.
  • They may need repetition.
  • When your approach has been acknowledged and accepted, continue your interaction.
  • Talk to the people who know the person who is congenitally deafblind best to get information about their communication methods.

Total Communication

The definition of Total Communication varies, depending on the context. Within in the Deaf community and in Deaf education,Total Communication refers to communication through signing, listening and speaking, lip reading and written methods. Out of this context, Total Communication has a broader definition. It refers to communication through any of the means described in this web page. Rarely would a person who is congenitally deafblind  learn or be exposed to only one method of communication. A combination of methods is usually taught.

For advice about your specific communication requirements, refer to a speech pathologist or consulting professional with experience in deafblind communication methods.