Ximena Serpa of Colombia
Second of two papers


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Workshop 4, Monday Afternoon 8 October 2001


I consider for this presentation the pre-linguistic deafblind children the same as the ones that we call "congenital deafblind".

The situation of every child can be different, some can have residual hearing and vision, some can have one sense working and others may not have any vision or hearing. However I will talk about the general situation of a deafblind child without any other problems.

To identify the special needs of the pre-linguistic deafblind children, we have to know what are the characteristics of these children:

  •    : They may lack the ability to communicate with the environment in a meaningful way (McInnes, Treffry, Deafblind infant and children, a developmental guide 1982). Because they can not hear or see what others want to say, it is difficult to get feedback for their communication intentions.
  •    : They may have a distorted perception of the world.
  •     They may be deprived of many of the basic extrinsic motivations"(McInnes, Treffry, 1982)
  •     They can not anticipate: They do not know that mom comes to feed and take care, it is more a scare situation for them because they just feel an adult near when she touched them or she gives a hot bottle.
  • &nbs[;  : They may not get visual information or they may receive it in a distortion way and for that they can not learn by imitation.
  •     They do prefer to stay in certain position in which they feel more secure, that can reduce their motor development.
  •     They do have difficulties to establish relationships with others.

The special "need of the pre-linguistic deafblind children are to acquire and develop communication, perhaps using specialised signing; developing skills in mobility; access information- for instance learning to read can be a long and difficult process, and for some this may not be possible". (Stuart Aiken, Teaching children who are deafblind...2000)

For all that reasons the deafblind child needs to learn by a more specific, clear, tactile hand by hand, one adult one-child method. In which the basic aspects to take in account are anticipation during all actions, routine activities in a structured environment.

Anticipation should always be taken into account when you interact with a deafblind person. It is a way to let them know what will happen or who is with him or her, for example we should use a special sign or object to identify us, always using the same perfume. Other activities can be when you feed him or her by using a sign. Such as, touching her mouth, when we are going to hold him or her touching the back or touching the body when we will change the cloths or letting touch him or her touch the water before a bath, etc.

Routine activities help the deafblind child to learn through repetition.

Structure and communicative environment: because it will help the child to understand the world, using their residual senses and physical abilities. As well as to communicate with others in an appropriate way.

ACQUIRE AND DEVELOP COMMUNICATION

To acquire and develop communication you need to start with the interaction and establish contact and begin to develop a means of communication. Using voice, sounds, touching the child to do an activity that he or she likes and always wait for a child to respond, that sometimes takes time, however it is a basic point to develop communication. "There answers can be a sound, facial expressions, gestures, eye gaze, or body movement, etc. these expressions for showing pleasure, displeasure, hunger, thirst, protest, request, gaining, attention, greeting and preferences" (Walsh D, communication Inservice, 1995)

Deafblind children often continue acting in the pre-linguistic step because the hearing deficit impact severe the language development; the visual deficit limit the exploration skills and the concept development and the representational thinking, the motor skills difficulties can affect the sign language and the social and emotional and social deficit limits the social communication (Ferioli,1991)

One useful tool to start communication with deafblind children is the resonance board (by Lilly Nielsen) through interaction between the adult and the child, in which both partners take turns to communicate. It can be used with sound, light and movement toys, for cause and effect. Also to stimulate mobility, perceptions (vision, hearing, tactile, kinestesic, memory, attention).

Motor fun and favourite activities done in a co-active way in which you stop and ask the child if s/he wants more are a close, no instruments, very effective way to develop communication. Always wait for the child to respond.

Body stimulation with different gentle textures, will help the child to understand that s/he is "something" apart of the world and is another initial communication strategy

The activities should be carried out WITH the child and not to the child.

The development of a relationship reciprocates between the child and the adult, in the one that both they move and act together, it allows to the first one to discover their own body like instrument to discover the world"

"Communication is not done in isolation, it will change depending on the situation and the people around the time. If people and situations seems to give out the message that communication is to difficult or take to much time then the child is unlikely to be motivate to communicate. The pupil needs to feel the environment is one that encourages and values communication. Communication should not be left to specific times and circumstances while following a timetable activity. Communication should be part of everyday activities. That way it will be useful and fun. Responsibility for helping someone to communicate effectively should never be a job assigned to a single "communicator", but be a part of everyone around that pupil." (Stuart Aitken, Teaching children who are deafblind...2000)

Activities as physical play, music therapy, play with toys and beauty sessions involving make-up and skin care are examples of continuing interactions and stimulate communication.

"One of the most effective ways of establishing contact with deafblind children and so encouraging a communicative response is to share activities with a high levels of physical contact and pleasant sensations. These include:

  •    : Massage
  •    :One to one signing
  •    : Co-active/ resonance movements
  •    : Swimming or hydrotherapy
  •    : Tacpac a package where taped music is linked to a range of tactile sensations
  •    : Sherborne movements
  •    : Aromatherapy
  •    : Intensive interaction" (Pease Laura, Teaching children who are deafblind...2000)

The Pre-symbolic communication starts when you establish a communication and a daily routine, in which the child does have activities to work on. At this stage you can use objects of reference, starting with one object that represent symbolically the action to be developed as anticipation. It is very important to understand that is the starting of the symbolic aspect of the communication.

When the child understands that s/he is using an object to anticipate an action, you can add other object that is representative for the other routine activities and so on until one to uses four objects of reference. Be careful when you select the object of reference concerning the child vision, because if the student does not have residual vision the characteristics of the object has to be totally tactile ones. What is the tactile reference for the child about the activity. These objects also are useful for the child to choose the activity.

When you are using four objects of reference, you can use a calendar of the daily activities, and use a sequence concept in the day.

Symbolic communication: Symbolic communication is a step that not all the deafblind children reach. You can know if s/he has to have a number of references with the objects, mentioned before, if s/he knows that the human body can be represented in a doll or any other way in which you use symbolisation.

To pass from pre-symbolic to symbolic aspects, you can use a part of the object of reference (the main part) on a board. In a way that the child recognise it, but will not be able to use or to hold as before. And use both for certain time. It will have a higher symbolic meaning. You can start at this point to use some words in the board in ink or braille. This way s/he will be familiarised with the reading. Also you can start using formal signs (sign language) for the activities.

After you pass to use a two dimensional one, as a thermoform for blind children, or picture (do it with a child in a co-active way) or photograph for the one that has vision, then use symbol as bliss or picture communication symbols (PCS), braille. The "pre-linguistic" child needs to develop so many aspects at the same time as the communication, such as:

MOTOR DEVELOPMENT:
To help develop the motor aspects, if the child does not have other disabilities, the clue will be to anticipate and help him/her to reach every step as:

Put his favourite toy on one side and call him/her to turn his/her head.

To turn over you can put a blanket behind his or her back and pull up on side then s/he will turn over. It is important that they found something nice as the favourite toy when he turns.

To help him/her to sit, hold her arms forward and put some pillows around, helping to be supported.

After they start the stand up position, the world will be seen from a different point of view, a wider one. You can stimulate him or her using a fan or your voice to move towards independent walking.

"It may be several years, and for some children it may be not possible, before the child can stand and walk to the desired object. For those who can make that leap, independent movement can be supported at first if the child is given a pram or trolley to push around. Aside from being safer from hazards, the child begins to learn the boundaries of the environment. Children who reject contact with prams, trolleys and they like but do tolerate human contact can be encouraged to depend less and less on being guided by contact. The child maybe prompted to walk in unfamiliar surroundings by gently touching him or her each step he-she takes. As confidence grows the number of contact made is reduced." (Stuart Aitken, Teaching children who are deafblind...2000)

The world for the deafblind child is what can be touched (or tasted and smelled) Within arms reach. Beyond that the world does not exist. So before trying to locate out in that 'world beyond reach' the child needs to begin to feel secure about reaching out to and moving towards objects and people that are just beyond reach. (Stuart Aitken, Teaching children who are deafblind...2000) .

ORIENTATION AND MOBILITY
Before you teach O&M, he/she should know about his own body. Start the O&M training, giving as much surface body contact as possible. Use different textures placed on the wall, help the child to know the way and to motivate the exploration with his- her hands.

The perceptual stimulation will depend of the residual vision and hearing that the child has. There are several programs for low vision. I will not emphasis on them, because they depend on each individual situation. For hearing you should use sound toys, your voice, musical instruments.

SOCIAL
In the social aspects we look first for interaction with the mother or care giver, as display of positive facial expression: smile, relaxation, laugh; participating with familiar routines. Then interactions start with father, siblings and other members of the family. It is important to remember that every one should have a identification symbol, as well, there are better results if the child works with less people in the beginning, or later on with the intervenor.

The need for informal contact with adults who show pleasure in the child's company and can offer a measure of affection expressed trough appropriate physical contact will continue throughout life.

DAILY LIVING SKILLS
There can be a complete conference to talk about daily living skills.

The key with the deafblind child in these aspects is the continual communication, the anticipation, the routines.

Even deafblind children with severe learning problems, were able to become independent in the daily living skills, through routines, working hand on hand. On the feeding activities, starting to put her hands on the bottle to let him or her hold it. After on the table behind the child and hand on hand teach him or her how to use the spoon, drink for the glass, etc.

For dressing also hand in hand put his-her clothes on and step by step let the child finish the action.

The same to take a bath, hand on hand and going step by step until independence.

To finish; the use of the diaper, it has to be brain maturation. To know if the child is ready to do it so, you have to check if s/he stays with her-his diaper wet for at least one hour. If s/he is wet, you can start a recording frame in which you write for two or three weeks the hours in which s/he urinates. At the end you will have more or less his/her urinating time and you should take h/she to the toilet, few minutes before the "calculated time" and congratulate s/he for doing in the right place. It is very important the positive recompense.

As at the dressing the deafblind children with severe learning problems were able to go with out diapers. However it needs a lot of patience.

CASE STUDIES:

Aridna is a 13 year old teenager that attends a typical school. She is very smart congenital rubella child. She was in a Speech therapy program as a hard of hearing baby. She developed cataracts and lost vision in one eye. At the age of five she become part of a program for deafblind children and learn how to communicate through sign language, using the residual vision in one eye. Her hearing was not functional, however she uses hearing aids. After 8 months at this school, she was integrated for two years in a school for deaf children and after two years in it, she moved to a school for typical students. In which she still is.

Andres a 15 year old, is a congenital rubella teenager, he was five when he started an appropriate educational program. He showed a mental retardation, at this age he walks, eats with his hands; his communication was based on biting others or hitting hard himself in his face.

He become independent in daily living skills as he learned to use the bathroom and discard the diaper, to eat using silverware, to dress and undress himself. To wash his hands, teeth and body. Learned to make a orange juice, a sandwich.

Uses objects in a functional way.

His communication improved; did not bite anymore, changed to a gesture intentional communication: asking by pointing to what he wanted, taking the hand of the persons, rejecting when he did not want something. And interact with adults and children. Uses objects of reference as an anticipation.

(Workshop No. 4, Monday afternoon 8 October 2001)


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