- Selected Topics
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In this work, the authors discuss the definition of deafblindness, assessment of hearing and visual acuity, combined sensory impairment, causes of deafblindness, psychological examination methods for children who are deafblind, Usher syndrome, congenital deafblindness, deprivation (sensory, experiential, and social) and its consequences, attachment theory, social education theory, calendar systems, attachment relationships as a basis for communication, development of anticipation and communication, and communication systems.
Reprint permission, courtesy of Dr. Jan van Dijk & Catherine Nelson, 2001
Jan van Dijk, Marleen Janssen, and Catherine Nelson
2.1. The Child Who Is Deafblind from a Diagnostic Pedagogic PerspectiveWho are deafblind?
In order to properly answer this question, we would first like to separately discuss the auditory and visual functions of a human being. Through examples to this effect, we will try to clarify how strongly both sensory-functions impact each other. The word deafblind is written in a connected way and not as two separate words 'deaf blind', because a unique condition is at stake here, one not merely caused by a combination of deafness and blindness.
2.1.1 About Hearing
In this article, only a general description of the loss of auditory sensibility, as expressed in the classical audiogram, is provided. There is sufficient literature available in which the establishment and the meaning of an audiogram is described [e.g. Hallahan & Kauffman 1991, 264-274].
The average loss of hearing is usually expressed in the Fletcher Index. This is the average loss of hearing in the frequencies 500, 1000 and 2000 Hz. This index also matches the weakening experienced during the perception of speaking signals and therefore can be an important conditional indication for the development of speech.
The ability to perceive signals in the frequency areas between 400 and 3000 Hz is very important for the discrimination and the identification of most [Dutch] phonemes. Every speech-sound has its own typical frequency spectrum, in which a number of frequencies are stronger. These stronger ones are called formants. The frequencies of these formants are characteristic of, for example, the vowel. With an /a/ the first formant is about 800 Hz and the second formant about 1250 Hz. For an /u/ these formant values are about 400 and 800 Hz and for an /i/ about 400 and 2300 Hz. It speaks for itself, that, if a person experiences a loss of hearing within these frequency areas, the understanding of speech, and subsequently speaking, might be affected. More and more it appears that even with a slight loss of hearing, particularly in the higher frequencies, important limitations can arise in the understanding of speech. In this respect, the listening environment in which a person who is slightly hearing impaired finds himself is very important. Even if one has only a limited loss of hearing and is in an environment with various sources of noise, it can be extremely difficult to understand what others are saying without the use of lip reading. Perhaps it is possible to roughly follow a conversation, but when more detailed distinctions are at stake such as 'meer' and 'weer' and 'Piet' and 'niet', only a limited loss of auditory sensibility can cause a number of misunderstandings.
Footnote: 1. Meer-voudig gehandicapten: een zorg apart / red. H. Nakken; J. van Dijk & M Janssen - Rotterdam: Lemniscaat, 1993 - 227 p. ISBN 90-6069-892-4
Under unfavorable listening conditions, the person in question might function as if he were almost totally deaf. Indeed, people who are hearing impaired often make spontaneous use of the visual channel where there is an unfavorable signal-noise ratio [e.g. trying to understand speech when the radio or television is on, or at a noisy party].
Another problem is that certain noise pressures are experienced far more intensively by some people with hearing impairments than by people with normal hearing. This appearance of recruitment or a reduction of the span of hearing is often very unpleasant for the person and does not ease his adaptation to a hearing device.
One should distinguish the loss of sensibility as a result of poor conduction of the stimulus up to the cochlea [conductive loss of hearing] from the further conduction of the electrical stimulus from the cochlea to the brain [perception deafness]. A combination of both limitations often occurs. This distinction has significant consequences for the adjustment to a hearing device. It is impossible to simply say that giving a person with hearing impairments a hearing device will solve all ' of his hearing problems. There are other aspects to consider than simply the loss of sensibility. These include the ability to hear selectively under unfavorable listening circumstances and the individual dynamics of the ear which also determine what a person with hearing impairments will be able do with his hearing device to understand speech.
Often one sees, certainly with a hearing loss that is greater than 90 dB Fletcher Index, that in spite of sufficient amplification by means of hearing devices, speech cannot be understood for the full 100%. Possibly, this is the result of the fact that in this type of hearing loss, the temporal resolution and the frequency selectivity of the ear have become so limited that the ability to discern the various speech sounds has significantly decreased. The speech sounds might possibly be heard, but not be sufficiently discriminated. To follow a conversation, the person in question should therefore be supported extensively by lip reading. With major losses of discrimination, one can even consider such a person as deaf in regards to the understanding of speech. One can hear, but one cannot understand. Furthermore, a significant loss of hearing certainly does not mean that such a person is unable to hear environmental noises or even speech. On the contrary, sometimes the low or very high frequencies are easily heard. It often happens that someone can discern the rhythm of a sentence because, in the low frequencies [125 - 250 Hz], good residual functions remain. At the same time, it is a well-known phenomenon that in some cases, persons who either do not, or who are barely able to discern speech, react immediately when the tea kettle whistles or the door creaks. Such persons have some residual hearing in the higher frequencies.
From this short summary, it is apparent that hearing is very complex and that one must be careful when expressing such a complex human function in a number, for example, stating that a child has a hearing loss of 80 or 90 dB. It is also evident, that an audiologic examination limited only to an audiogram, is usually incomplete or even deceptive. Certainly this is the case when in addition to the phenomena mentioned, there are also problems with the auditory processing of stimuli.
Generally, all that we have described above can be traced back to problems with the cochlea or the auditory nerve. In certain circumstances, it might occur, that the stimulus is transferred, organically disturbed or not, to the brain, but that the stimulus is not properly processed.. This is called auditory imperception. This phenomenon is often observed, for example, in children whose mother suffered a viral infection such as rubella during pregnancy. In the audiological sense, these children can 'hear' as they often react very adequately to signals from their environment, but they understand very little. [Van Dijk, 1982; Coninx, 1990].Audiological examination techniques
The 'Brainstem Evoked Response Audiometry' is a technique, which is very useful in children with multiple disabilities when examining the loss of auditory sensibility. The electrical impulses from the cochlea, the auditory nerve, and the brain are registered and processed with the aid of a computer. In order to successfully conduct the examination it is important that the child be very quiet or even asleep. Sedation is not always necessary. Through this test, it is possible to determine the threshold of audibility to a level of 100 dbBHL. BERA however does not offer a full audiogram, as it is only possible to measure the higher tones [2000 - 4000 Hz].
The 'Visual Response Audiometry' begins with the premise that [young] children react on light rather than on sound. By means of classical conditioning, both stimuli become linked together. After the presentation of an auditory stimulus which is outside the direct field of vision of the child, a rewarding visual stimulus is immediately presented [e.g. a doll or train]. If, after the auditory stimulus is presented, the child looks in the direction where he expects the reward, one can conclude that the child has observed the auditory stimulus.
'Air Puff Audiometry'
This technique was primarily developed for use with very young children and children with multiple disabilities. The method is based on the principle of classical conditioning. Immediately after the presentation of an auditory stimulus, a little rush of air is conducted along the eyelids. This gives rise to a natural defensive reflex. When the child has been conditioned, he will blink his eyes after the auditory stimulus has been offered or even take a defensive posture.
This test, which belongs to the so-called play audiometry techniques, requires more cooperation by the child. Each time the child hears a sound signal, he should put away a block. It is important that prior to the audiological evaluation, the child be examined by an otolaryngologist to determine whether the auditory canal is in a good condition or if there is some pressure behind the tympanic membrane. Such phenomena will, of course, influence the reliability of the results of the audiological evaluation.
2.1.2. About Seeing
The examination of the visual faculty of the child [visual examination] is of equal importance as is the determination of the hearing loss of the child. Vision, like hearing, is a complex function. More than visual acuity is at stake here since for effective use of the visual faculty, other functions of the eye also play an important role.
Based on a proper visual examination, one can decide to make certain adjustments, such as the prescription of glasses, contact lenses or low vision aids, which might cause spectacular changes in the behavior of the child.
Each eye examination should begin with the determination of the visual and refraction possibilities of the eye. If the child, for any reason, is unable to cooperate in this examination, perhaps because he is frightened in the dark room or of the ophthalmologist, those accompanying the child should attempt to ease his fears, for example by seating him on one's lap or making prior visits to the ophthalmologist's office. Hopefully, the child will then be more relaxed and will allow his eyes to be examined by means of a microscope or refractometer.
Even a slight decrease in visual acuity might disadvantageously affect the child's development. Because of deviations in refraction, objects often cannot be observed sufficiently from nearby or from a distance. This might stagnate the development of those activities which require a high degree of detailed observation. One should consider this when looking at a child's drawings or pictures.Examination Methods to Measure the Visual Acuity
SNELLEN E Test
This instrument is used to measure visual acuity. The person being tested stands 20 feet from a chart which consists of E's pointing in various directions and decreasing in size, line-by-line. A person who can read all of the lines that a normal eye can see at 20 feet has normal visual acuity or 20/20 vision. A visual defect is indicated when the denominator is higher than the numerator [how far the person was from the chart]. For example, if a person has 20/100 vision, it means that he/she had to be as close as 20 feet to see what a person with normal vision could see at 100 feet. A person with 20/200 vision is considered to be legally blind.
The BUST test is based on the same principle as the character cards with the E or other characters. However, images are used here, which appeal to, and are easily recognized by children, such as a spoon or a fork. The card test of the PIGASSOU is also very useful for measuring what a child can see from a certain distance.
TELLER ACUITY CARDS
This method is very useful with young children starting from 6 months of age and also for children with severe multiple disabilities when measuring visual acuity. The child takes a seat behind a screen with an opening. After the examiner has attracted the child's attention, the opening is covered by a card with stripes of a certain thickness on one side. By means of an observation hole, the examiner looks to see whether or not the child directs his eyes towards the striped pattern ['gratings']. One starts with very large patterns with a line thickness of about 1 cm. The gratings offered become finer and finer, until the child does not fixate' any longer on the pattern and his eyes wander about the sheet.
Visual Field Examination
The term, field of vision, refers to what a person can see in one glance. This space can be imagined as a cone, which extends on the side of the nose to 60 degrees and on the side of the temple to 110 degrees. The determination of the visual field requires a great deal of cooperation from the person involved or much practice. The person to be examined has to put his head on a support and look straight ahead to a central point in a semi-ball. Little light spots are projected and the subject should keep his eyes on the fixation point, while indicating whether or not he has observed a light spot somewhere in the visual field. This examination is very important, as many persons with auditory disabilities experience defects in their visual field.
Contrast Sensitivity Examination
It is important to examine the ability to discern very subtle gray shades between black and white. Disturbance of this ability, called contrast perception, might have significant practical consequences. Cards have been developed on which the child indicates whether or not he is able to discern certain gray gradations [e.g. VISTECH 6500 and 6000 or CAMBRIDGE LOW CONTRAST GRATINGS test].
2.1.3. About the Combination
With this summary of a number of examination techniques, we have attempted to clarify how important an extensive diagnostic assessment is when it is suspected that the visual and/or auditory functioning of a person is not optimal. By using two descriptions of individuals, we will try to clarify how seemingly minor defects in the auditory and visual systems, when combined, can result in severe limitations in functioning.
The first example describes a well-educated blind man who became fully blind in his early adolescence because of a genetic disease. However, when asking for assistance, he described himself as deafblind. While studying his audiogram, it appeared that he was only slightly hearing impaired and hardly could be considered to need a hearing device. The sensibility loss was the greatest in the high frequencies at 30 dB. This 'slight loss' however had significant results in that he could not discern certain voices when only limited background noise such as the sound of his computer printer was present. In such circumstances, he described himself as fully deafblind. Should this man have had a normal visual faculty, he would have long ago fallen into the habit of looking at the face of the person talking to him in order to compensate for the missing information.
The second case describes a girl who attended a school for persons with hearing impairments. According to her audiogram, this was a correct placement. The right ear had a sensitivity loss of FI 80 dB and the left ear F1 95 dB. With a hearing device, and in a quiet situation, the girl could understand about 70% of the speech directed towards her. Because of a growing decrease in her visual field due to defects of the rod system of the retina (retinitis pigmentosa), reading lips had become more and more difficult. When looking straight ahead, the girl was able to read even small characters, however, because her visual field had become so small, she was unable to identify who was talking to her in class. Consequently, she missed more and more in class discussions and her speech development stagnated. She also resisted gymnastics because she was unable to follow the games. Her contrast perception appeared to be severely disturbed and she was bothered by glistening surfaces. These factors explained, to a high degree, the perceived difficult behavior of the girl. After she was placed in a school for deafblind persons which took these 'small defects' into account, she recovered spectacularly.
From both these cases, the need is apparent, for the differentiated approach of the term 'deafblind'. We talk about a scale of combined sensory handicaps, which can extend to fully deaf and blind, or to an inability to compensate through the use of auditory and visual functions. The requests for assistance from these persons cannot be met through the use of treatment strategies for auditory disabilities nor for visual disabilities alone. It is a unique combination, which can only be fully understood after extensive multidisciplinary diagnostic examinations. Only after such examinations, is it possible to establish a proper action- or rehabilitation plan. Internationally, we presently use the following description : a person is deafblind when he/she suffers a severe combined limitation of hearing and seeing, which results in severe communication-, information- and mobility problems.
2.1.4. Causes of Deafblindness
Generally speaking. we can discern three important causes of deafblindness.
a. Congenital deafblindness
These persons are deaf / hard of hearing and blind/ low vision from birth. In
3/4 of those cases, the fetus was damaged by a viral infection such as the well-known rubella virus. In spite of the fact that for approximately 15 years, the rubella vaccine has been available for young girls, about 30 to 100 children are still born in Holland who are handicapped because of this early infection. About 1/3 of this group can be considered deafblind. In the Netherlands, many children who have come from third world countries are not vaccinated, and consequently many deafblind children are found in this population. Many children have also come to the Netherlands from islands in the Caribbean area which have not succeeded in effectively conquering rubella. Other viral infections such as the cytomegalie virus [CMVI might also damage the hearing and visual faculties of the fetus during pregnancy.
b. Genetic deafblindness
Seen from a genetic point of view, it is understandable that in relatively many cases, both the auditory and visual systems show defects. Sometimes the same gene is responsible for both auditory and visual problems as is seen in Usher Syndrome. This is often a recessive form of heredity, where a defective gene causes a certain part of the cochlea to function inadequately, and at the same time, is responsible for the malfunctioning of the so-called rod-system. The rod system enables us to discern shapes under conditions of low light and to see in the periphery.
We can distinguish at least two types of Usher Syndrome. Persons with Type I have congenital, profound deafness combined with balance impairments. The decrease in their visual field, beginning with night-blindness, manifests in their early adolescence. Persons with Type ]I have congenital hearing impairments with no balance disabilities, and a visual field which decreases only in the second decade of their lives. Within both types there are individual variants. At this time, over 80 combinations of deafness / hard of hearing and visual problems have been described.
C. Deafblindness Due to the Aging Process
All visual and auditory functions decrease with age. In certain cases this might be so severe that the person involved can be considered deafblind. Most auditory problems identified are in the cochlea and cannot always *be solved through the use of hearing devices (presbyacusis].
Certain eye defects are also frequently found in the elderly population. Well known is the age related cataract. This means that the eye lens has become opaque. Thanks to advanced ophthalmologic techniques, it is now possible to remove the lens and implant a new, artificial lens. However, this is not always possible. More serious than the cataract due to advancing age, are defects of the yellow spot. For these people who have macular degeneration, it becomes difficult, and sometimes even impossible, to read or to watch television. In certain cases, some low vision aids can offer some relief. People with diabetes also experience severe eye problems which require intensive ophthalmologic care. Because of bleeding into the eye and other problems, vision can decrease tremendously.
2.1.5. Developmental Possibilities of Persons Who Are Deafblind
There is a significant difference between persons who have dual-sensory impairments from birth and those who acquired one or both disabilities later' in their lives. We limit ourselves here to 2 categories of deafblind persons: congenital deafblindness and children who have Usher Syndrome.
a. Congenital deafblindness
Children who are damaged during the development of their auditory and visual organs in the womb [usually during the first three months of pregnancy], often have many other defects as well. With respect to development, it is important to remark that an early viral infection might limit the development of the neurological network of the brain. This might result in the child being difficult to condition, having association problems [memory], and directing himself strongly towards one aspect of the world. Therefore, education of persons who are deafblind differs very much from the education of children with limited intellectual abilities: they may understand things at a given moment, but then forget them later on.
Based on the degree of impairments in conditionability, coordination and memory, three groups of deafblind people can be discerned:
Category A. Children who function in a low range and exhibit a great deal of stereotypic behavior. Severe impairments in body coordination, intelligence and memory are also present.
Category B. A middle group of persons in whom the problems listed above are less pronounced.
Category C. A group in which the stereotypic behaviors can be replaced by other stimulation forms. The limbs cooperate in a rather coordinated manner, enabling the children to express themselves by means of gestures or other methods of communication such as finger-spelling and writing. In spite of the fact that learning time is long, and many things may need to be repeated, the children from this group do eventually learn from the experiences they have.
Through appropriate education and the support of parents who can offer the child the security he/she needs [see above], the child who is deafblind might transfer to another category [e.g., from the first to the second one or from the second to the third one].
In order to establish a realistic plan of treatment, it is important to assess in which category a child functions. An experienced diagnostician will do this with reasonable reliability [for relevant test procedures: see scheme]. The categories mentioned should match the degree of support the child needs.
The children in category A will need intensive support throughout their lives. Their ability to provide for their own needs is low, and their behavior might appear to be very obsessive because of its stereotypic nature. They might exhibit some impulsive behaviors such as anger or aggression necessitating a very structured program.
The middle group [category B] consists of persons, who have lost their stereotypic behavior over the course of the years, but will fall back into their former behavioral patterns during times of stress. Consequently, they will continue to need support from their environment despite their relative independence.
The last group [category C1 consists of persons, who have reached a reasonable to good level of communication despite an initial problematic development, and who are able to function quite independently. A number of them are able to provide for their own living expenses. They use modem communication methods such as the TDD (deaf telephone] or Braille telephone. In order to reach this level, support from parents is important.Psychological examination methods for children who are deafblind
Behavioral examination Adaptive Behavior Scale ABS, Publ. American Association Mental Deficiency; Vineland Adaptive Behavior Scale, Pub. American Guidance Service; Functional Skills Screening Inventory, Publ. Functional Resources Enterprises.
Education skills, memory sub tests of the Hiskey Nebraska Test of Learning Aptitude, Lincoln-Nebraska; Leiter International Performance scale, Publ. Swets & Zeitlinger
Differential diagnostic Test for the development of eupraxia of hands and fingers with young children. Publ. Instituut voor Doven, Sint Michielsgestel; Test for finger eupraxia, Publ. Instituut voor Doven, Sint Michielsgestel; Memory test for successive finger movements, Publ.Instituut voor Doven, Sint Michlelsge'stel; Rhythm test for hand and mouth, Publ.Instituut voor Doven, Sint Michielsgestel; Behavior checklist for identifying severely handicapped individuals with high levels of autistic behavior, Publ. Oregon: Asiep Educational Company.
b. Children with Usher syndrome
These children have, for the most part, normal intelligence and educational abilities. In general, they are not emotionally disturbed. The increasing problems with their vision often makes a choice of profession very difficult for them. Many persons with Usher I type live independently until their forties, provided that their visual impairment was recognized early enough that no regression occurred. It is important that a program be started in a timely manner to keep their mobility [freedom of movement] on a certain level, especially in twilight or dark conditions. When the visual field has become very limited, professional support is a must to prevent the occurrence of depressive complaints. When the environment cannot offer sufficient support or because of the limited capacity of the persons involved, a residential setting of [adult] deafblind persons may be beneficial.
In the Netherlands, the provisions for persons who are deafblind match the categories mentioned very well. [See scheme Deafblind in Holland]. Based on examinations abroad [Ellis, 1986] it can be expected that a number of persons in boarding-schools for intellectually retarded persons who are also sensory impaired is larger than that mentioned here. It is estimated that in addition to subnormal intelligence, about 25% also have auditory disabilities, of which 1/3 also have visual problems. Often, the sensory problems are not recognized in the general care of mental deficiency. It is also not sufficiently taken into account that the decrease in sensory functions of persons with mental retardation occurs at a much younger age than in the general population [C. de Jong, personal communication].
In our further description of theory and program aid, we have to limit ourselves, because of the heterogeneity of persons who are deafblind. We will focus on children, who are congenitally deafblind. From the beginning they require a specific 'total program' of diagnosis and treatment, which can be differentiated from other kinds of ortho-pedagogic assistance. At the same time, we are convinced, that a number of starting points in the program for congenital deafblind children can be used successfully for other groups of children with severe, multiple disabilities. [Stillman & Battle, 1984] Therefore, we certainly want to give some attention to this aspect. We will also discuss the 'other deafblind children', the children who 'acquired' both or one of these disabilities at a later age, as their [communicative] development and the use of communication methods is at stake.
Deafblind in Holland. Number of persons and residences
Category A Bartimeushage in Doorn, 25 residents, [max. waiting list : 100] other categorical institutions for visually and mentally handicapped: 16 residents. General mental deficiency 'care: 340 residents
Category B and C Instituut voor Doven in Sint Michielsgestel, department Rafael: 60 pupils.
Usher Type I Spread all over the institutes for deaf persons and independent inhabitants: 250 persons [of which 1/3 is rehabilitated and supported from the visuscentre of the Instituut voor Doven in Sint Michielsgestel, in cooperation with regional centers for the sake of blind persons and persons with low vision, Kalorama, way of living for deafblind persons 'Heinde en Verre' in Beek Ubbergen: 27 residents
Usher Type II Kalorama: 5 residents spread over schools for hard of hearing persons: an unknown number of pupils. independently living: an unknown number of persons; rehabilitation Foundation 'Het Loo-Erf' in Apeldoorn: some residents per year. Advice from Visuscentre, Instituut voor Doven Sint Michielsgestel and regional centers: 15 clients.
Blindness because of old age Homes for the elderly, nursing-homes, hospitals, independently living: 1000 -4000 persons; Kalorama: 10 residents.
Educational Placements of Students who are Deafblind in the United States
In 1993, 9783 persons from birth to 21 were reported as deafblind in the United States [307.11 count, 1993]. In addition to deafblindness, 60% were reported to have mental retardation. Other disabling conditions frequently mentioned include orthopedic impairments, traumatic brain injury, and health impairments.
In the United States, educational placements of students with disabilities including deafblindness have been dramatically impacted by the 1975 passage of Public Law 94-142 [now the Individuals with Disabilities Education Act or IDEA] which mandated a free and appropriate education in the least restrictive setting.
In 1980, 53% of deafblind students were receiving education in either a residential school for the deaf or blind or in a state institution for the retarded. In 1992, only 20% were educated in residential schools and 66% were served by the public schools [Baldwin, 1992]. In 1993, of 6334 public school placements, approximately 7% were in a regular class, 5% in a resource room, 58% in a separate class, and 28% in a public separate school [307.11 count, 1993].
Under IDEA, educational placement should be determined by a team generated individual education plan rather than disability. Individual goals and programs may be met in a variety of settings. Hence, a student with a severe cognitive disability in addition to deafblindness [Category A] might still receive his education in a regular class setting but have an individualized plan of objectives with educational strategies and resources designed to meet those objectives.
2.2 The Child Who Is Congenitally DeafblindDevelopmental aspects
When describing the specific developmental problems of children who have auditory and visual impairments from birth, we want to start from three relevant theories. Relevant, as these might give insight into the development and behavior of the child who is deafblind on one hand, and on the other, offer important starting-points for parents, teachers and group supervisors to adjust appropriate treatments in the various environments; an appropriate pedagogic approach and education at school, in residential programs, and the home.
Aspects from these various theories together form the basis for assessment and assistance as we will describe in 2.2.4, that is always predicated on the creation of optimal developmental possibilities for the child who is deafblind in his specific environments. How, in such complex development processes, factors inside the child, and factors in his environment, constantly influence each other will be illustrated by some examples.
2.2.2. The Child Who Is Congenitally Deafblind, Considered from the Deprivation Theory
a. Sensory deprivation and experience deprivation.
When we consider the life start of the child who is congenitally deafblind, we see a difficult process. The fact that he cannot, or has great difficulty seeing, often in combination with other unfavorable physical factors during his first phase of life, has a great influence on the development of deviating behavioral patterns. Added to this is the auditory impairment. Visual deprivation plays the most important role in the explanation of the often atypical behaviors of these children. However, the auditory deprivation also has significant effects on development, especially regarding interactions with the environment.
By virtue of a complete or partial inability to see in the distance, the child who is deafblind is severely limited in gaining sensori-motor experiences. The child will have difficulty organizing and linking stimuli from the environment when the stimuli only reach him fragmentarily. His reaction is to close himself off from certain stimuli and/or escape into one-sided stimuli where he is completely absorbed [e.g., by light or vibration]. Hence, you see children, who are fixated on moving branches, the turning of washing machines, or buttons on the television. Because of the lack of sensory stimuli, the organism tries to find some compensation by being intensively occupied with the sensory 'residues'. The child with very low vision will do everything he can to catch sun rays in his eyes or lay his ear on the radio to catch some sound signals.
A defect of the senses which causes an inability to see in the distance always goes along with some motor delay. For a child who is deafblind, the challenging effect of the environment as a stimulus to move is weak as he misses the feedback normally provided by hearing and vision. Hearing and seeing play an important role in the establishment of object permanency and the understanding of mutual relationships between objects. A child with a dual sensory impairment cannot see nor hear where a favorite toy or a daily utensil comes from, or goes to, when it falls down. The child will not know where to find the object or know that there is a possibility to search for it at all. Because of his deafness, we cannot tell him what is going on, as we would do with a hearing child. When he throws away the object, it will be outside his observation field. A child who cannot see, or who has very low vision, will not recognize that his hands can be used to use objects as a medium to obtain whatever he wants. The sensory observations remain fragmentary, and therefore, things, events, and certainly persons are often unpredictable. The opportunity to learn from its faults is very important to the child with vision and hearing. For a child who is deafblind, this avenue of learning is cut off as he cannot see or hear the results of his actions and make necessary adjustments when desired results do not occur. Indirectly, the dual sensory impairment influences the development of the competence motive; the desire to strive for an effective interaction with the environment [Riksen-Walraven, 19771. The child, having fewer opportunities to experience the effects of his own actions, will meet with more obstructions, and therefore experience less pleasure in his own actions and movements. The result is a child who is not motivated to move or to explore things, but rather remains passive or looks for compensation in one-sided stereotypic behavioral patterns [Van Dijk, 1991].
b. Social deprivation
During the first years of life, a good mother-child relationship will form the fundamental basis for further social-emotional development. The first care of a child is of great social and affective meaning. Through this relationship, the child develops a sense of basic security, which is a condition for him to be able to explore his outside world step-by-step.
It is evident that this early mother-child relationship in the education of the deafblind child is threatened in various ways. As the physical condition of the child is fragile, he might become over-sensitive to certain stimuli. An example is the typical 'fade away' with contact forms such as being rocked or carried. Such reactions might cause feelings of disappointment or frustration on the part of the parent. Also the parents will often be immediately affected by the child's nutrition or sleeping problems. One often speaks of the 'failure to thrive' phenomenon. The very demanding care which often results, may cause the parent to suffer from a lack of sleep and become truly exhausted. Frequent, or long lasting hospitalizations [e.g., for eye surgery], might also create a threatening situation for both child and parent. The sudden environmental change for the child, together with a separation from his parents, and the negative experience of medical treatment and their results, might cause feelings of fear and loneliness. Moreover, the child born with a dual sensory impairment may have developed a completely unique pattern of communicative signals. The child is seemingly less responsive and his behavior might differ in such a way, that the educators, parents and other care-givers have difficulty finding starting-points from which to build up a good relationship. Conversely, it is very hard for the child to understand the signals from his parents, educators, and caregivers.
c. Results of deprivation
The child who is deafblind can be considered truly 'deprived'. As a result of a complex combined action of sensory and social deprivation phenomena, often combined with neurological defects [for example, spasticity] the child lives in an environment with extremely limited stimuli. In such a very deprived situation, the human organism reacts in a specific way. It will do anything to find some balance or homeostasis with its environment, and will look for compensation in self-stimulating behavior. This is one of the causes of the stereotypic behavior, which is so manifest with these children, especially when they are left on their own.
It has been proven, that the behavior of children who are deafblind with bilateral cataracts [eye lens opacity] is dominated by various types of stereotypic behavior [Van Dijk, 1982]. Most characteristic of this behavior is the fascination with all kinds of light stimuli. Staring at light sources, moving hands before the eyes and eye poking are behaviors which might be considered to be a result of visual deprivation. Other behaviors these children often exhibit such as rocking, clutching and typical 'jump behavior' can be due to social and auditory deprivation.
When a child frequently engages in these restricted, habitual behavioral patterns, there is an enormous obstruction of development and education, including cognitive education, social-emotional development, and communication. The child enters into a state of continuous inward excitement, and as result, new stimuli from the environment will not make any impression or may be rejected. The so-called 'orientational reaction' remains in abeyance. This means the child is not aware of - the new environmental stimulus. One could say that the child is captured in his own physics, experiencing his environment more or less as a part of himself and therefore showing little explorative behavior. An example:
A girl was born with severe impairments including bilateral cataracts, deafness and heart murmur, as a result of a rubella infection of her mother in the second month of pregnancy. The girl spent the first years of her life in a hospital where she had many infections and an inadequate rate of growth. The next four years were spent in an institution for mentally handicapped children in a ward for bedridden children. At first, she refused solid food and her sleeping rhythms were very irregular. She received inadequate social, motorical, and cognitive stimulation during this phase of her life. Slowly, she became fully blind because of glaucoma [increased eye pressure], which could not be reduced by medication. At the age of 5 years, 7 months the ophthalmologist diagnosed 'blindness with some light perception'.
At the age of 3 years, 8 months, the first diagnostic observations took place in the institution. She showed a variety of stereotypic behavioral patterns, which are characteristic of a rubella-child [e.g., eye-poking, staring into the light, moving her hands before her eyes, and tapping with her fingers against her face]. This seriously hampered her explorative behaviors. The girl was extremely passive and showed severe delays in her development including an inability to walk. The stereotypic behavior, however, was stopped quite easily. An important observation was made when the girl's customary nurse announced her arrival by tapping against the bed before approaching her. The girl showed an 'orientative reaction' as she recognized the tapping and showed anticipation of the arrival of the nurse by stopping her self-stimulating behavior and quietly awaiting the arrival of the well-known person. She appeared to be easily conditioned, for example, in a movement-game on the lap of the examiner, the examiner initiated a rocking movement from the left to the right and then stopped the movement. The girl quickly learned that by using a signal with her foot, she could easily restart this enjoyable motion. A reliable psycho-diagnostic examination was not possible, but those observations of orientative reactions and conditionability appeared to be of tremendous value for her education and learning program. At the age of almost 5 years, she was taken into a department for deafblind persons where she reached many milestones in her development including learning to walk independently at 5 years, 7 months, entering into an adjusted day- and night rhythm at the age of 8 years, 6 months, and developing communication [gestures / finger spelling] at 10 years of age.
2.2.3. The Child Who Is Congenitally Deafblind, Considered from the Attachment Theory
In order to get a better insight into the social-emotional development of children, especially deafblind children, it is important to study the nature and way the relationship between mother [or primary caregiver] and child develops [Bowlby, 1969, 1982; Lamb et al., 1985]
In the attachment process, which generally begins at birth, the 'contact comfort', or feeling good and safe in the contact with the mother, is essential for the baby. In a good attachment relationship the parent creates a safe base from which the child dares to explore his/her environment.
It is known that at an older age, children with a secure attachment are more competent in social relationships, have better problem solving skills and show more mature play skills as they explore more and engage in more varied pretend games than do children with an insecure attachment [Lamb et al, 1985].
When establishing a secure relationshi , the responsive reactions of caregiver and child are important. As the caregiver reacts quickly and adequately on signals and communicative expressions of the child, the child develops an idea of accessibility and predictability along with positive feelings about that reliable person. In addition to sensory impressions, memory plays an important role here. Through routine and regularity of daily care, the child learns how the caregiver will react. An 'inner work model', or image of the style of interaction and emotions of the caregiver is built. At the same time, the child forms an image of his own reactions and acts upon it. The child learns that through certain expressions and behaviors, the adult can be influenced. It. will be evident, that children who are deafblind and their parents experience many difficulties when establishing a secure relationship. Quite a number of children who are deafblind do not develop this safe base. Broesterhuizen mentions a percentage of 76% of insecurely attached deafblind persons [Broesterhuizen, 1990].
Because of the dual sensory impairment, the child's signals are atypical and difficult for the parent to recognize. Visual impairments have an especially large impact as eye contact, reading mime, mutually looking at the same object or the same handling [mutual looking] are hardly possible. This hampers, to a great extent, the natural synchronicity where reactions of the mother adjust to the expressions of the child and vice versa.
In order to meet the need for contact comfort, tactile physical contact is essential. When touching and moving together happens too intensively or suddenly, confusion might result. Because of this social deprivation, the child might turn away. Therefore, it is not surprising, that in various articles about children who are deafblind, one can read that many of them are autistic [Chess, 1971]. It has been shown, however, that the self-stimulating behavioral patterns of deafblind (rubella-] children are more connected to sensory and social deprivation and often also to intellectual disabilities, than to autism [Van Dijk, 19911. Certain typical behaviors such as the stereotypic jumping, clutching, and rocking with the upper part of the body can be considered as an expression of the urge for proximity which can be manifested throughout their lives. In this respect, children who are deafblind clearly differ from autistic children and can rather be compared with children with emotional and mental retardation [Krug a.o., 1980]. This fact is very important in treatment.
2.2.4 The Child Who Is Congenitally Deafblind Considered from the Social Education Theory
According to the social education theory [Bandura, 1977 and 1986] behavior and development are determined to a great extent by the environment. One starts from the idea that behavior, which has gone in a 'wrong direction' can be changed in a positive way by altering the environment. Through education, a child can learn a certain behavior in three different ways; education by reinforcement, by instruction, or by imitation. In one way or another, one of these forms of influence is active. As a result of deprivation and the lack of responsivity, the young child who is deafblind has learned some deviant behavior in the sense of self-stimulation and withdrawal. This is the most characteristic way for the child to maintain himself. Most behavior is learned unconsciously in the context of operant conditioning in which a response is linked to a stimulus [situation] by means of reinforcement.
If we want to change the behavior of these children or help them learn new behaviors, education by reinforcement will be most effective. Because of the dual sensory impairment, the child, is at first, unable to learn via instruction, and his ability to learn by observation is very limited. As a result of the fragmentary sensory information and frequent self-stimulatory behavior, the child who is deafblind seldom comes spontaneously to orientative reactions or to the exploration of contingencies [the relationships between stimuli and consequences]. The orientative reflex is an important developmental variable for further education, as is the ability to link a signal to a certain situation or reaction [Mescheryakov, 1962].
Difficulty in learning contingencies can be considered as an essential problem in the education process of persons who are deafblind. Learning experiences may be imperceptibly connected to one another. For this reason, deafblind education often differs from other forms of special education. Particularly due to the visual impairment, there is a delay in the ability to imitate. Learning new behaviors based solely on learning by observation rarely. happens. New activities can be learned co-actively among others in an intensive one-to-one relationship. The educator shows the child how to handle things by putting his/her hands on the hands of the child, while constantly confirming the positive behavior of the child. When the child is older, new skills are also learned in this manner. A danger of such an intensive, individual approach is that the child who is deafblind might become too dependent on the hearing and seeing educator. Another problem with such an intensive one-to-one approach is that the contact with children of the child's own age might be limited. However, a child who is so captured in his own body will not at first contact other children by himself and will not experience the so-called behavior modeling which is very important for social education. Playing, and especially social playing, will not begin spontaneously.
Once a child has established a secure attachment, and is able to reach out to his world, social relationships with other children can be facilitated. The child's peers will likely have more highly developed social skills, and these can be used to help the child who is deafblind learn social playing skills through hands-on interaction. The number of children that the child is expected to build relationshi s with should, at least in the beginning, be very limited. The child who is deafblind does not have the luxury of getting to know others through the use of his distance senses, he must learn about them at very close range and this is going to involve a great deal of time and trust. It is important that peers be shown how the child who is deafblind communicates, and how they can communicate with him. They must know how to approach the child and how they can best include him in their play. Once children understand what the child who is deafblind can do and what his particular learning characteristics are, they can be very creative in devising strategies for including the child in their activities. As the child who is deafblind matures and experiences more interpersonal relationships, social skills are learned via education by confirmation and rules of behavior. The skills for sensitive identification with another person can be considered as a talent which can only be developed in persons who are deafblind who have reached a high level of development.
2.2.5 The 'Other' Children Who Are Deafblind
As you might have learned from the preceding, it makes a difference whether a child is auditorily and visually impaired from birth or if the onset is at a later age. The nature, level, and time of onset of the sensory impairment, the compensation possibilities, and last, but not least, the individual history will strongly determine the further development of the person in question.
Persons who experience a dual sensory impairment only later in their lives have an advantage over children with congenital deafblindness, especially in the area of language development. Usually the development of the 'other' deafblind children is more favorable. However, in this group, the influence of the sensory limitations on emotional development requires specific support, as well as supporting the transfer to 'other' systems of communication and skills for independent living. The program we will describe in the next paragraph is, as we have already mentioned, focused on children who are congenitally deafblind. From a number of starting points in this program the 'other' deafblind children can certainly benefit. Once again, we want to emphasize the necessity of an Individual Educational Plan determined by a careful assessment and continually adjusted to the well-being of the 'total' person.
2.3. The Congenital Deafblind Child as Ortho-pedagogic Problem Type
A holistic approach plays always a central role both 'in assessment and programming for children who are congenitally deafblind. One starts from the total individual, and based on specific examination procedures, the plan of action is established and continually adjusted. A number of test procedures have already been mentioned. In addition to these standardized instruments, 'observation' and 'diagnostic teaching' are used, based on the specific knowledge and experience of the diagnosticians. Persons from the various disciplines unite their efforts in teams.
With respect to the general program, one starts from the individual plan of action and a 'diagnostic' method of education in which the educators request assistance and evaluation of their teaching which then becomes the starting point of the assessment.
The young child who is deafblind lives in a often closed, inward world, and is barely aware that there is a difference between 'I' and the 'outside world'. In the education of these children, the development of communication should be considered the most essential objective.
Children with congenital deafblindness often function at a pre-symbolic communication level for a very long period. They have no notion of the gestures such as hand or mouth movements, which people use to express themselves. Gaining an awareness of this might take many, many years. A number of persons who are deafblind will remain at a non-symbolic level when they are adults while others will develop a symbolic language system.
Beginning with the theories described, we will try to describe the most fundamental starting points in education.
2.3.1. Request for Survey and Ordering
As described in the paragraph about deprivation, the child who is deafblind, at first, lives in a world where environmental stimuli are transferred in fragments or in a chaotic manner. The child is unable to learn on his own which stimuli he needs to orient himself to and how he can effectively handle people and objects in his environment. In confrontation with the 'outside world' the risk of becoming confused is apparent. An essential demand the child indirectly addresses to his educators is to render assistance in surveying the world he lives in. Assistance in building images of objects, persons and interactions herewith, and learning to explore connections will be the basis for his further education.
Having a survey of the world he lives in and always knowing what is going to happen will meet the need for a feeling of security which is so fundamental for social-emotional development. At the same time, building up clear images is essential for the beginning of communication development [Mescheryakov 1962]. To have order in one's life and to be able to predict the environment and events in it are important starting points for treatment. Paramount are the elements of 'persons', 'time' and 'place'.
a. A fixed daily routine
The educational program of a child who is deafblind begins with the creation of a predictable daily routine. In an intensive relationship of 'being mutually active', the educator supports the child in his natural daily activities. The educator always establishes the ordering, and clarifies connections which are exactly tuned to the needs of the child. At first, these needs are limited to essentials such as eating, drinking, taking a bath, sleeping, and the need for contact and movement. By executing these daily repeating activities at unvarying times and places, and with, as often as possible, the same people, one hopes to have the child discover some stable or 'fixed' routine. For example, the child discovers that after bathing, he will always have a drink at a certain table and that after drinking, he will receive his favorite fruit, or when he is in a certain room with a certain person, he will execute a 'motoric circuit'. By building a routine in such systematic way, habits will be formed. The most motivating moments for the child can act as fixed points of recognition during that day.
In order to meet the need for prediction, it is also important that, during the day, all activities be announced in advance and the child be informed of when something has been completed. In addition to a systematic planning of the daily program, one also uses a number of aids such as calendars and association books.
The main function of these aids is for memory support. By 'recording' activities and experiences, both the educator and the child, have some concrete basis that one can use to refer to things in a concrete way. We believe that these calendars and other aids can be of great help, not only in connection with the establishment of a survey, but also for the development of communication. The child will learn how it is possible to actively express his wishes and subjects for discussion. Using illustrations, we want to clarify the use of such calendars.
Each child should have his own person-al 'calendar system' which is adjusted to his individual degree of survey and his personal communication codes. As the child grows and develops, these aids are further differentiated in accordance with his needs.
In a daily calendar, all daily activities are planned in advance and the calendar is used during the day to announce all activities. In the picture at the top, a girl's calendar utilizes abstract references [see top picture].
From the daily calendar, one advances to the weekly calendar. With the help of pictures, textures, or objects one can announce the most important activities of the week and also refer back to these activities at a later time. These weekly calendars can later be extended to a monthly or yearly calendar or be replaced by an agenda.
Count off calendar
For special events which occur over longer periods, one can use a ' count off calendar. The time before bedtime can be used as an opportunity to count off longer periods and announce changes in time. These can be used, for example, as preparation for weekends at home or a favorite excursion, or in the disappointing event that a weekend at home or an excursion cannot take place. At the same time, the count off calendar can be used to indicate a holiday period, a camp week or hospitalization. Each morning it should be brought to the child's notice that 'another night is over', or he has 'to sleep such and such many nights'. Thus he will discover that a special event is getting nearer or is almost over.
For activities which are too complex for the child who is deafblind to remember, for example, because they are extended over a longer period or take place in different situations, one can use an activity planner. With the help of this planner, one can prepare activities step-by-step and plan ahead [e.g., shopping or cooking]. In the planning stage, the