talks about how parents and the social environment reacts to the first diagnosis of hearing impairment and how they can be supported by professionals to manage the situation adequately and at the same time with an empathic attitude towards the child.
- 1 Chapter 1-The moment of diagnosis
- 2 Chapter 2-Caregiver -infant interaction
- 3 Chapter 3-How to support parents and caregivers?
- 3.1 Learning goals
- 3.2 Direct and indirect stimulation
- 3.3 From theory into practice
- 3.4 The later the diagnosis the more specific needs for education
- 3.5 Parental support as parental empowerment
- 3.6 Strategies helpful for parental empowerment
- 3.7 External support for day care providers
- 3.8 Review questions
- 4 References
Chapter 1-The moment of diagnosis
When parents receive the news that their child has a significant hearing problem, their reaction is one of disbelief The diagnosis of a significant hearing loss comes, more unexpected than ever before. Minimal and unilateral hearing losses are now more commonly detected at an early age than before the advent of neonatal hearing screening. Reactions on diagnosis can be very different.
This chapter will be helpful in understanding why the moment of diagnosis – and the way this situation (i.e. having a child with hearing loss) is perceived – changed dramatically once neonatal hearing screening made early diagnosis possible. It is important to understand that psychologically coping with minimal or unilateral hearing loss can be as difficult as dealing with more profound hearing loss.
A bolt from the blue
When people suddenly lose something that, emotionally, is extremely valuable to them, certain psychological mechanisms are triggered to enable them to cope with this situation. When we are confronted with the unexpected loss of a loved one or the diagnosis of an incurable disease, denial alternated with grief, anger and bargaining are perfectly normal reactions as we seek to give the new emotional situation a place in our lives. This is also the case when parents are told, out of the blue, that their perfect-looking baby seems to be deaf.
Now that neonatal hearing screening (see Module 1) is here, the diagnosis of hearing loss is made much earlier than in the recent past. Rather than coming months or even years after birth, it is now a case of only weeks or even days. More than ever before, the early diagnosis of deafness is often like a bolt from the blue. Why, when it comes, is it so unexpected? There are many reasons for this. First of all, deafness on its own is an ‘invisible’ impairment. Secondly, most hearing parents are totally unfamiliar with this kind of disorder; about ninety per cent of deaf children have two normal-hearing parents. Thirdly, neonatal screening and early diagnosis occur when the baby is at such an early developmental stage that the parents are barely given the time to figure out for themselves that something may be wrong with their baby’s hearing.
Most of the time, deafness is not accompanied by other obviously visible impairments. It remains hidden from the eyes of the infants’ mother and father – and, with them, the whole family – who from their baby’s birth onwards monitor their child very closely for anything that might be wrong, however small. Even when the hearing disorder is part of a syndrome or caused by meningitis after birth, the impairment itself remains ‘invisible’ as a physical defect.
Baby’s mask their deficit
Moreover, when parents try to find out how their baby reacts to sounds, they are often ‘misled’ by the child itself. When the input sound, ‘presented to’ the baby, contains enough reflected sound caused by low-frequency reverberation, it is possible that the child is responding to this reflected sound despite being deaf. This is often the case if someone claps their hands or taps a desk or table. The child can sense the reverberations coming back from the furniture or can feel the airflow generated by clapping. It is also possible that the baby has seen the movements of the hands as opposed to actually hearing the sounds. Reaction to sound is even more complex than the previous literature suggests. It is possible that a baby is responding to a specific sound – even to speech sounds spoken very close to the child’s ears – but not receiving sufficiently finely tuned acoustic information to discriminate between these sounds. So the adult may correctly gain the impression that the child can hear but without knowing that it is not getting enough information to learn to understand them. This may give the parents the idea that the child is responding appropriately to sounds or to what they think it must be reacting. In reality, however, the infant might be responding to other cues than those assumed by the parents. It does not mean, when a child reacts to different sounds, that they are also able to discriminate between these sounds. Moderate hearing loss may be enough to limit these possibilities. And – something which serves to confuse us even more – deaf babies do, from the very beginning, also vocalize and become engaged in a mutual proto-dialogue with their caregivers, even if they do not hear the sounds they produce themselves.
Baby’s have to own up
If a child is profoundly deaf, however, they cannot ‘mislead’ those around them indefinitely. In the past, before neonatal hearing screening was established, mothers discovered after a few months that there was something wrong with her child’s hearing ability. Often by chance, they observed that the child did not react or wake up after being exposed to a loud, unexpected sound. These mothers commonly relate that they felt ‘left alone’ with these misgivings, with both family members and professional physicians having seen the mothers’ concerns as misplaced and exaggerated. The final diagnosis of profound hearing loss, often after more than one or two years, was the confirmation of what mothers (and sometimes fathers) had already known long before the impairment was officially confirmed, but with their suspicions rarely being taken seriously. It is not difficult to imagine that this situation triggered a great deal of anger in the mother for not having been believed for so long and for all the time she feels has been lost.
Nowadays the picture is completely different. The unexpected early diagnosis will lead parents to deal in a different way with the bad news they receive at the hospital or audiological centre.
Minimal and unilateral hearing losses show up
The scope for early diagnosis now means that not only profound hearing loss is detected at a very early age, but also moderate and even unilateral hearing impairment as well. A unilateral hearing loss is a substantial hearing impairment in one of the ears. In the recent past only severe and profound deafness was diagnosed relatively early (i.e. by the age of one or one and a half years). Moderate and mild hearing losses tended to be detected much later, and unilateral hearing loss was often first discovered in adulthood, if at all. This new situation means that the way in which the way parents respond, and deal with, the early diagnosis are also different from the past. Whereas previously the medical confirmation of substantial hearing loss often, in a way, brought a kind of relief – the beginning of a clear-cut process of grieving – nowadays the psychological responses seem to be more complex, depending on the degree and type of the baby’s hearing loss. Mothers of children with mild to moderate hearing losses or with unilateral hearing loss find coming to terms with the diagnosis much harder than do mothers of children whose baby has a more profound hearing loss.2,4,18 Although the latter group are undoubtedly greatly upset and saddened by the diagnosis, they are grateful to have the diagnosis at an early stage in the child’s development. This gives them the feeling of not having wasted time, and of being able to make a difference and give their best from the very beginning. It is not hard to understand that these reactions should differ, depending on the degree of hearing loss. In the case of a slight or unilateral hearing loss, where no further support is provided, parents perceive the screening and early process of diagnosis as being intrusive and as disrupting what should be a ‘sacred’ period of undisturbed, blissful parent-child interaction. However, for parents of children who are diagnosed as having a moderate or severe hearing loss and receive the necessary support in the form of early use of hearings aids and early intervention, it is often difficult to ‘handle’ this support. One can be certain that parents, as well as the grandparents and all the relatives living in close relationship with the family, are constantly ‘testing’ the child. As was described previously, children may respond to the sounds around them in an ambiguous and inconsistent way. Not only parents, but also professionals in day care, do not always understand the difference at that age between detecting sounds and distinguishing between different sounds, this discrimination being necessary for later identification of these sounds. At a very young age, the parents of these children experience more of the drawbacks of hearing aids than the advantages. These aids, with their annoying high-pitched sounds, are the only obvious indication to the people around them that there may be something wrong with the baby. Parents have to be highly motivated and emotionally strong to cope with these situations. They will be less inclined, say, to go for a nice, healthy walk outside with their child if its hearing aids are constantly whistling and if they have to deal with the reactions of neighbours or friends whose smiles give way to surprise or shock when they look at the baby in the buggy.
It seems a paradox, but the milder the child’s hearing loss is, the more difficult it would appear to be to accept it and the more experienced and skilful early guidance has to be in order to provide adequate support. When a baby is profoundly deaf, accepting help is less of a struggle for parents, as they very soon become aware that their baby cannot hear without the aid of powerful hearing aid or cochlear implant (CI). However, in cases of mild or moderate hearing loss or unilateral hearing losses where the benefits of intervention are not so obvious, parents often say that it would have been better not to have received the diagnosis so early. They wished that they could have had a longer ‘carefree time’ with their child.
Families deal with the diagnosis in different ways
Although parents of a child with a severe or profound hearing loss express satisfaction with early diagnosis, the diagnosis itself does come as a totally unexpected. They are left with hundreds of unanswered questions because the parents of a child with hearing loss generally have no experience of dealing with this impairment in the family. These parents are often full of grief for what they think their child has lost and will never have. Parents need time to come to terms with these feelings. They need time to cope in their own way with the loss they experience. They need their own ‘rhythm’ in mourning, expressing anger, bargaining and in giving all this a place in their lives.
As can be understood, the reaction to the early diagnosis of hearing loss can differ from family to family and a lot of variables are involved. Stable families with a good social and familial network will react and cope with it in a different way than single parents who do not have a lot of support. Sometimes extended families from lower social strata are more supportive of this new situation than highly educated parents. As we have already mentioned, both the degree and nature of the hearing loss can also give rise to different reactions. It is also known that the way people cope with disability is partly a function of cultural background. Christian, Jewish and Islamic cultures have, in general, a different view of handicap, disability and suffering. It is, however, dangerous to think in stereotypes. Our experience is that even within different cultures, every family and even the different members within each family have different views and feelings.
The virtual attendance is a real one
This means that the starting point for good parental support involves carefully listening to every member of the family, and not merely launching into a standardized, one-size-fits-all guidance programme. Reality teaches that, even today, a lot of home guidance takes place mainly in cooperation with the child’s mother. This does not, however, mean that the father, the grandparents and other children should not be involved. When talking with the mother, we can ask how she thinks her husband is responding to their child’s diagnosis or how the grandparents are reacting. ‘Virtual attendance’ by a family member may sometimes have a greater impact than real attendance. Many difficult conversations with a mother who refused a CI for her child can illustrate this. After numerous talks, and without being able to establish contact with the father, the mother explained that her husband was extremely anxious about his child’s undergoing any kind of surgical procedure. She said that his brother
had died during just such an operation when he was four years old and that he was absolutely opposed to any surgery, even if it would help his child to hear.
Diagnosis as a turning point in life
Returning to our initial topic, one thing is certain: early diagnosis of hearing loss changes the way parents perceive their child. The point of diagnosis is, effectively, a ‘before-and-after moment’ in the lives of the child and their family. Diagnosis marks a turning point and, in the case of deafness, often spells the end of the existing, relatively carefree, situation. It changes forever the way the parents see their child and, most of the time, the way they interact with the child as well.
This moment also changes the very way the family’s lives are organized. Depending on the seriousness of the hearing loss, from now on parents will be in more or less constant contact with doctors, audiologists, therapists and parent counsellors, and probably with other parents of hearing-impaired children through involvement with parent groups or parental organizations. They will visit different websites than before, read different books, and – in the early stages – mentally register everything in their social environment that has to do with hearing loss. From now on, they will spot every adult and child in their neighborhood with a hearing aid. They will notice them in magazines and on television. They will return to the perception of deafness they had in their youth. Everything is overwhelming and they cannot reconcile it with their own baby and their own life. It is not difficult to understand that professional assistance can be very useful in helping parents process all these impressions, enabling them to give them the right place in their lives.
Babies with hearing loss often ‘mislead’ adults with regard to their hearing capacity because:
a) they can discriminate between speech sounds at an early age;
b) they may merely be reacting to reverberations;
c) they respond to a neonatal screening test;
d) they vocalize less than hearing children do at an early age.
After neonatal screening, parents of children with profound hearing loss often cope better psychologically with this disability than parents of children with a minor hearing loss because:
a) they are less angry that they have not been taken seriously;
b) they experience more obvious benefits from early intervention;
c) the diagnosis immediately follows screening;
d) they are emotionally more resilient.
Chapter 2-Caregiver -infant interaction
When a child’s language is not developing as expected, parents as well as other caregivers often cultivate a controlling – as opposed to a supportive – communicative interaction style.
In this chapter, readers will learn the difference between those two interactional styles. They will understand why parents or other caregivers with a hearing- or language-impaired child often tend to behave linguistically in a more directive and controlling (rather than supportive) way. They will learn why a supportive style works better than a controlling one. Readers will understand what is meant by the concept of ‘communicative mismatch’ in relation to hearing impairment. They will see why the impact of this mismatch is dramatically changing in this era of neonatal screening and appropriate early intervention.
A changing belief
Parents feel most comfortable with newborn hearing screening when there is rapid follow-up in the form of good medical and audiological care.4,18 This does not mean that the early, unexpected diagnosis of deafness and the proposed early intervention will not still be rather overwhelming, as we have seen. There has in the past been much research describing how the diagnosis of deafness brought changes in the natural communicative interaction style between mothers and their child. These more empirical findings are often well illustrated and described in a narrative way in more autobiographical books. Mrs Robinson for example, the mother of two deaf daughters Sarah and Joanne, described in her book how she lost her parental intuition in communicating with her daughter from the moment she heard that she was deaf. She felt that she was no longer in tune with what Sarah was feeling, and that a strange life was going on behind her daughter’s eyes that she could never understand.11
These thoughts illustrate very well how deafness, in the first instance, elicits a feeling of closeness to, yet distance from, others – a feeling of impotence and inability to enter into mutual interaction. Helen Keller, who became deaf and blind at a very young age, is reported as saying that blindness alienates us from the things around us while deafness alienates us from other people. It is not surprising that parents automatically stop talking to or singing with their children. As well as thinking that there is no point in doing this any more, they often lose any pleasure they had in this kind of interaction with their child. They often stop playing music in their home. It is as if they feel guilty for enjoying things in which they think their child cannot participate. An important aim of early guidance is to help them recapture this pleasure and to help the parents discover that their child does enjoy the things that they had given up on. In the recent past, when rehabilitation was not as successful as it can be today, it was not as easy to keep faith in the idea that the residual hearing of a profoundly deaf child can be developed. For example, although it was known that even profoundly deaf children with severe additional problems enjoyed listening to and making music, many professionals described these activities as less useful or even as a waste of time. This is a good example of what can happen when we become responsible for the education of a child with an impairment. There is always the danger that we will set a lot of limits and restrictions for the child which are more ‘intellectually deduced’ rather than based on real observations of the child’s actual behaviour.
A mother told, with tears in her eyes, how difficult it was for her to use a telephone after she had received the awful diagnosis that her daughter was deaf. She could not stop thinking that this would never be possible for her deaf child in later life. Today, this girl is eight years old. She surpasses her peers in spoken language despite her hearing impairment, and has no problems phoning anyone.
On the other hand, it is also possible that we may be demanding things, and may have certain goals in mind for the child, that they can never achieve owing to their impairment. Some deaf adults today are angry at normal-hearing people, even at their own hearing parents, for not having had full access to sign language and for having being pushed to do things that brought them no benefit.
The only way to find the right balance, and to see the real child’s needs, is to learn to be sensitive-responsive. That means that we have to learn to listen very carefully to the developmental signals the child is sending out and to respond appropriately. This is of great importance for the language development of deaf children.
There is a body of research evidence that the parents of a child with a handicap become more controlling and directive in their interactive behaviour and that they experience difficulties in properly tuning into the real language developmental needs of their child. Parents often develop a controlling language-teaching style instead of a supportive language-acquisition style. They take on the role more of teachers in the language-learning process, and talking to their child rather than that of mothers talking intuitively in a pleasant and relaxed way with their child.12An important reason for doing so is the parents’ concern that the child will never learn to speak. So they often want to immediately control the ‘output of their input’, so to speak (i.e. the child’s response to what the parents say). This phenomenon is more common when the children have already reached speaking age but are not yet talking.
Playing a double role
It is a profound realization that, from the very beginning, mothers of typically developing children see their baby as a real conversational partner rather than a pupil that has to be taught a language. When a mother is engaged in proto-dialogue with her baby of a few months old, she tunes into her child’s signals. She repeats the baby’s cooing sounds and responds to them. A very significant aspect of what has been called ‘motherese’ or child-directed speech3 is the way in which mothers seems to play a double role16 in conversation with their baby or toddler. When a baby communicates an intention by crying or vocalizing, a mother automatically translates these vocalizations into conventional language. When her baby is crying, she can interpret and translate these sounds, saying: “Are you hungry, my darling? Ssh, Mummy will be there in a minute.” With this utterance, the mother is not only trying to comfort her child; she is also – quite intuitively and without realizing it – doing an excellent job helping her child acquire language. First of all she translates the child’s communicative intention into the conventional language of the people around it. The mother may be talking in English, Flemish, German, Spanish or whatever language the child wants to speak but is unable to. She says, “Are you hungry?”, exactly capturing her child’s wishes: the child wants to say, “I’m hungry.” It is very important to understand this. The mother does not need to teach the meaning of the words “I’m hungry”. Rather, she is giving the child the words for the meaning it already has. And then, having first provided the child with the words it cannot yet say, she gives her own answer: “Ssh, Mummy will be there in a minute”. The maternal instinct is always to put the child first – and language is no exception here. She will first feed her hungry baby before getting a meal for herself. So she will first provide them with the necessary language before giving her answer. Looking at this we see that a mother is modeling a real conversation, assuming the function of speaker and listener at the same time. In this dual capacity, she plays the role of both the child as initiator of the conversation and that of herself as listener in this exchange, by both speaking for the child and replying to the child’s communicative utterances. This important characteristic in mother-child conversation remains evident for a long time during the child’s language development – probably for as long as the child’s linguistic skills are growing. The basic essence of the dual role remains, but the mother’s utterances develop as the child’s language skills improve. What is very important in this supportive maternal language style is that language is rarely ‘compelled’. Mothers provide the correct language model without explicitly asking the child to repeat after them. And, as if by a miracle, at a certain age children voluntarily repeat after their parents without being asked to – although, when directly asked to, they often refuse. So as we can see, children are no different from adults in this respect. It seems that, right from the beginning of their lives, human beings cherish their freedom and prefer to control themselves instead of being controlled – or at least prefer to have the illusion of doing so.
Anxiety and uncertainty makes caregivers controlling
Research concerning the interactional style of hearing parents with deaf and language-impaired children shows, however, that they often want, in the first instance, to control the language outcome for their deaf children. The way they expand on their child’s utterances is not tuned into their child’s real potential for using – and growing need to use – language.
Nienhuys, Cross and Horsborough were pioneers in this area, finding that mothers of deaf children from the age of two gave more orders to their children, and asked their children fewer questions by way of eliciting understanding, at that age than did hearing mothers of hearing children. These authors, however, cautioned that it is dangerous to compare the interaction style of hearing mothers of deaf and hearing children by merely matching up the children’s chronological ages. It is more useful to match the language age of the deaf and the hearing children. On doing so, these authors found that a lot (although not all) of the differences between the two groups of mothers disappeared. Comparing two-year-old deaf children with one-year-old hearing children, these authors found no differences in the speech styles of the normal-hearing mothers. When five-year-old deaf children were compared with their language-matched hearing counterparts aged two years, however, this did reveal that some important differences remained. One of the significant differences between the two groups was that mothers of deaf children were less likely to expand on their children’s language utterances than mothers of hearing children. Mothers did not pick up on and amplify the child’s language any more than mothers intuitively do with younger children who are not deaf. This means that these deaf children are not being appropriately challenged in terms of language development.10
This study is important in that it suggests that a kind of intuitive child-directed speech does exist, but that is not perfectly in balance. It is an important aim of the early-support services to help the parents find the balance between over- and under-stimulation and to help them precisely tune into their child’s developmental level.
Various researchers indicate that hearing mothers show a highly controlling and sometimes intrusive style of interaction. It is often seen that, during play, parents of deaf children try to dictate the topic of conversation – more so than parents of hearing children do – and, in the process, tend more to dictate the course of the play session. During video analyses it is often seen how parents and their children playing together with a toy farm. Most of the time children begin to explore how they can open and close the doors of the farm. Instead of following up on their child’s own interest, parents often immediately ask the children to name the animals in turn. They ask “What’s this animal?” and “What’s this animal?” instead of waiting to find out what the child wants to say to them whilst exploring the doors. Wood and his co-workers describe five levels of linguistic control.17 The highest level of control is asking the children to repeat exactly what you are saying: “Say ‘horse’”. This is the strongest form of linguistic control because the mother knows exactly what the child is supposed to say. At the second level, the child has to choose between two words given by the adult – was it black or green, sweet or sour, Mum or Dad? The third level is the level of ‘WH’ questions – questions as to where, why, who, when and how. At this level the adult is less controlling but still, in some way, they are steering the child’s answer in a certain direction. If the question asked is ‘when’, it is not possible to answer with a place (as if the question asked was ‘where’). At the fourth level, the adult makes their own contributions to the exchange but lets the child freely dictate where the conversation is going. At level five, the lowest level of control, the adult is doing no more than encouraging the child to continue their own story by interjecting something like “OK” or “Hmm”. The problem is that, if parents are using a high level of linguistic control when children are capable of using a lower one, the children’s short-term memory is insufficiently stimulated for processing linguistic information. The children also do not learn to formulate their ideas and thoughts in accurate language, and they in fact become ‘non-real’ conversational partners. We have to realize that this controlling, less supportive interaction style is not an inevitable trait of hearing parents with a deaf child1. The controlling style of interaction is probably often triggered by the parents’ anxiety, concern and a lack of belief that the child will develop language in a spontaneous and natural way. To use a metaphor: instead of believing that flowers are growing while people are sleeping, they start pulling on them to help them grow. The danger is, however, that the flower will snap off. So we have to teach parents again that flowers grow by giving them good soil and enough to drink. That means that we often have to teach parents to listen to their child carefully and to translate the child’s communicative intentions into good conventional language, which parents intuitively do with typically developing children.
A mother tongue can’t be taught
A native language is not acquired by working through a well-structured language-teaching syllabus. No parent has ever taken a course on how to teach their children to talk. In the first instance, the child develops competence in their mother tongue when the child’s non-linguistic communicative intentions are translated into a linguistic message or by expanding upon the incomplete language of the child. The technical term for this is recasting. Although the definition of a recast varies slightly in the literature, with some commentators treating recasts and expansions as synonymous, they are essentially “replies that keep the basic meaning and reference of a child’s prior utterance, but build in a growth opportunity because there is a more complex language structure in the reply than in the child’s prior utterance” (Nelson, Heimann, Abuelhaija, and Wroblewski, 1989, p. 136)
Many detailed examples of this are given in the next Module. What we want to stress here is that it is important to take the communicative signals of the child itself as the starting point. This also means that we have to look very carefully at the way the child responds to our supportive stimulation and to expect that the child will learn from it. We need to closely monitor what the child is doing with the recast language of the parent. Is the child looking at the parent when speaking? Is the child exhibiting this ‘shared attention’ behaviour more and more often? Is the child willing to spontaneously imitate the parents’ spoken language, or is the child merely using and imitating non-linguistic gestures for communication?
There are many reasons why a supportive style is better than a controlling one. A supportive language interaction style is by its very nature dialogical. The parents are engaged in real conversation with their child and they are not playing the role of a teacher. They enrich the language input by means of real, easygoing conversation without putting pressure on the child. This harmonious, natural atmosphere in which language is provided fosters rapport and bonding between adult and child. It helps the child become open-minded and willing to take in this new linguistic information. Linguistically speaking, when parents are translating the nonverbal intentions into verbal ones, there is a perfect match between referent and meaning of the language. When parents use language to comment on what the child is doing, there is also a greater chance that the ‘mapping’ – the correspondence between the language supplied by the parent and what the child supposes it to mean – is correct. When parents are engaged in easy conversation with the child about the child’s own topic of interest, parents are also using speech characteristics that are language-facilitating. More expressive prosody, more repetitions and a better-defined rhythm of speech seem to facilitate the memory for language learning.
In the past, however, this ideal conversation seemed to prove the exception, not the rule, between hearing parents and profoundly deaf children. Researchers found parents not only to be often controlling and intrusive in language learning; they also found that normal-hearing parents lack the necessary attention-getting strategies required to establish a more visually-based conversational style by means of lip-reading or sign language. Some linguists felt there was a fundamental conversational mismatch between hearing parents and deaf children8,13. We will discuss this important issue in the next chapter. We will also explore the changes recently brought by neonatal screening and subsequent early audiological and pedagogical support.
Many studies carried out at Gallaudet College, the only university for deaf students in the world, have described communication between hearing parents and their deaf children as a communicative mismatch.8,13 They often compared ‘deaf mother-deaf child’ dyads with ‘hearing mother-deaf child’ dyads. At Gallaudet College, sign language is seen as the first language of deaf people and there is less attention paid to residual hearing. In most of the studies, the children wore no cochlear implants (CIs), and certainly not at an early age. Although times have changed and implants have given deaf children access to hearing from a very early age, these findings are still highly relevant to the present day. They tell us that most of the hearing parents of deaf children (and more than 90 per cent of deaf children do have normal-hearing parents) were described as having problems acquiring fluency in sign language. First of all, their vocabulary remains poor compared with that of native sign language users. On the other hand, most of the time hearing parents use a kind of communicative strategy termed simultaneous communication (‘SimCom’). They speak and use signs to reinforce their spoken language. Parents usually have no awareness or knowledge of the specific, intrinsic grammar of a sign language. A lot of studies also report that hearing parents lack the pragmatic strategies for attention-getting in order to establish visual, as opposed to aural, conversation. The pragmatic rules for success in visual conversation are very different from those for ‘aural-oral’ conversation. It is, for example, not difficult to understand that story-telling with a deaf child who cannot hear spoken language is different from a storybook session with a hearing child or a deaf child whose CIs give them access to spoken language. Whereas a hearing child can sit on the mother’s lap while she is telling them about the picture the child is looking at, a deaf child needs to alternate between looking at their mother and the book in order to understand what she is talking about. While a child with normal hearing can listen and look simultaneously, a deaf child who needs either signing or (more probably) lip-reading skills to understand the message requires a ‘successive’ visual strategy involving the alternating approach described. Researchers have shown that this does not come naturally to hearing mothers and that they experience a lot of breakdowns in communication with their child. Research also shows that deaf mothers often try to make signs in the visual field where the child is looking. They will, for example, make the sign for ‘ball’ above the picture of the ball within the child’s field of vision. These specific adaptations in the use of signing with very young children are also described as ‘motherese’ or ‘child-directed speech’, which is intuitively used by deaf mothers but not by hearing mothers. These studies suggest that it is not easy for many hearing parents to offer deaf children a high standard of sign language. They often recommended bringing in deaf adults as role models for hearing mothers, enabling these mothers to learn sign language from them as well as specific strategies for establishing and implementing a visual communicative system instead of an aural one. These role models should also have a positive psychological effect on hearing mothers, in that they see deaf adults functioning as independent human beings. A lot of research is still needed to provide hard evidence for these and other statements. It should be interesting to examine the influence of these role models on mothers’ confidence in their own mothering skills: in their ability to raise a deaf child. How does it affect the child’s attachment to their mother if they feel she is a far less fluent communicator than the deaf adult?
Research indicates that things have changed dramatically since the advent of neonatal screening and very early intervention6. Hearing mothers are more at ease, more effective and more confident in their interaction with their deaf, implanted babies and toddlers than hearing mothers of deaf children who were not implanted. We see that hearing mothers fall back on their intuitive natural interactional strategies whilst playing or story-telling with their deaf child. Parents learn that their child responds appropriately to what they say without looking at them when they are ‘in the right state for listening’. Their children take what are known as ‘vocal turns’, which they would previously have been unable to do. The children are also more likely to ask for clarification when they do not understand the message.
Research would appear to show that it is easier for hearing mothers and families to help their deaf child become ‘more like a hearing child’ than it is to make hearing parents and their families ‘more like deaf people’. The reverse is also probably true for deaf parents with hearing children. They often feel more comfortable, confident and successful raising their children using sign language.
A note of caution
This is a suitable juncture to sound a note of caution and to reflect on certain aspects. It is true that CIs brought a quantum leap in the hearing potential of deaf children. However, a great deal of ‘diversity in deafness’ remains. Even today, not all children undergo neonatal screening and are provided with appropriate hearing prostheses at an early age. Not all children get on well with their implant and about one-third of deaf children have additional problems. Even early-implanted children are not entirely the same as typically hearing children. Neither do all parents have the same capacity in terms of child-rearing and communication. We are living in a world with a lot of diversity. This means that we must, in home guidance, carefully monitor the quality of the interaction between caregiver and child. As Mayberry stated in her research, it does not matter what language a child thinks in first. What is important is that it a language in which they receive high-quality input and to which they have full access7.
Children with a well-developed first language will also have the possibility of becoming proficient in a second language, building on the first one acquired. It is therefore becoming important to determine which language – i.e. signing or spoken language – a deaf child has the best ‘access’ to, so to speak. As can easily be understood, this will depend on both the child’s abilities and the nature of their social environment. Is the child able to discriminate between speech sounds with their hearing aids or CI? Is the child in an environment that allows them to hear speech sounds? Does the child have additional language-learning difficulties or not? Do the people around the child speak or sign, or do they use a combination of both? All these factors are important in deciding which guidance will be most helpful for the child and their family.
A supportive interaction style (as opposed to a directive style) involves parents stimulating their child’s language development by:
a) monitoring the child;
b) learning some new, planned vocabulary items every day;
c) expecting the child to repeat to them everything they say to it;
d) recasting or amplifying the communicative intentions of the child in conventional language.
Solution (d) When parents know that their child is deaf, they more often use a directive, controlling communicative interaction style than do parents of typically developing children because:
a) a directive style is more helpful for the communicative development of a deaf child;
b) this is the natural parental style of intuitive language teaching;
c) they want to directly control the language outcome for their child;
d) parents of deaf children do not understand their child’s communicative intentions.
A communicative mismatch means:
a) that a deaf child cannot learn to speak in a deaf environment;
b) that hearing and deaf people rely on different communicative strategies;
c) that a deaf child needs sign language in a hearing environment;
d) that hearing mothers have to learn sign language for their deaf child.
Chapter 3-How to support parents and caregivers?
This chapter will explore the difference between direct and indirect language stimulation. In direct stimulation the child is stimulated in a less or more artificial way by a professional therapist. Indirect stimulation involves a professional helping the parents and other caregivers to create a communicative environment in which the child can develop language as naturally as possible. Readers will also learn what it means to create a positive, ‘basic communicative climate’ for deaf children. They will learn and understand that support has to do with the empowerment of the caregiver and the child’s educational set-up as a whole. Finally readers of this chapter will learn some basic strategies that can be used in home guidance programmes to empower parents and other day care providers in their role as successful facilitators of language.
Direct and indirect stimulation
Before discussing certain aspects and strategies involved in parental support, it is important to realize that parents and therapist have a different role in language acquisition by a deaf child. Parents should not play the role of the therapist and the therapist should not play the role of the parents. Both have their specific and complementary roles in helping the deaf child learn and acquire language. In this chapter the role of day care providers will be closely related to that of parents and distinctive from the therapists’ role.
The reason why it is important to make this distinction will be explained by means of a pedagogical model which is partially based on insights from Kok, a Dutch special-educational psychologist5. This model will also be helpful in better understanding the role of the parent counsellor during the early-intervention programme. Kok states that every child with specific problems such as mental retardation, autism, conduct disorders, visual impairment, deafness, etc., requires specific pedagogical solutions to their own specific pedagogical challenges. Whilst the education of typically developing children occurs mainly intuitively, that of children with specific problems will be more targeted or ‘intentional’ in nature. The answers to these specific pedagogical questions form a three-tier framework (Figure 1). The first tier is called the ‘basic educational climate’. The second tier is that of therapy, and the third represents the individual action plan tailored to each individual child and their family.
If we want to raise a child in a beneficial way that is in line with their specific educational requirements, we first have to create a basic educational climate that suits the fundamental needs of the child. It is common knowledge that the priority need of a child with autism is to have a well-structured life, whereas a blind child requires a predictable environment in which to live. And what a deaf child needs, above all, is a social environment that allows them to develop their full communicative potential. The basic climate itself comprises the specific organization of space and time on the one hand, and a good pedagogical relationship with the primary educators on the other. What this can mean for deaf children is explained more fully below. The second tier is that of specific therapy. This second level will be devoid of real meaning or benefit unless it is firmly grounded in the first tier. Without a good basic educational climate, therapy has no underlying basis to make it effective.
The third tier, that of the individual action plan, is necessarily composed of the elements of the first and second levels.
From theory into practice
How this theoretical background translates into practice will now be illustrated step by step with a deaf child in mind. One approach to therapy for young deaf children is that of auditory-verbal therapy, which involves the child being trained to listen in a highly systematic way. They learn to detect, discriminate between, localize and identify the sounds (including speech sounds) they hear around them. This kind of therapy, which corresponds to Kok’s second tier5, is not very valuable unless it is integrated into a basic climate that, on a day-to-day level, engenders learning to listen at home. After all, how beneficial can this kind of therapy be if the parents do not bother about using or maintaining the assistive hearing devices on a daily basis, or if they are still overwhelmed by sorrow and
Figure 1: Three-tier model for specific education (adapted from Kok)5
pain and refuse to put on the child’s hearing aids or cochlear implant (CI), or if they do not replace the batteries promptly as required? Neither will this kind of therapy, which takes place only a few times a week, be very beneficial if the child’s day-to-day environment is so noisy that they cannot hear or discriminate between speech sounds even when they are wearing their aids properly. As you can see, all these aspects have to do with the quality of the child’s living space, which was described as a component of the basic educational climate for the deaf child. During a home visit, it was seen how the deaf baby had been placed in a baby seat on the floor, near the cooling fan of the computer which was also standing on the floor. The parents did not realize that the background noise in that location was about 10 or 15 decibels higher than elsewhere in the house. The background noise levels at daycare centres will be even higher; there may be a lot of crying (or otherwise loud) children in an environment that often has high reverberation levels.
Giving ‘early aided’ and implanted children full access to spoken language means, first and foremost, that we provide them with an environment which offers a comprehensive input of speech sounds. Thinking and talking about the sound hygiene of the deaf or hearing-impaired child’s environment will be an important issue in home guidance.
As long as we are not sure that the deaf child can learn sufficient language by incidental exposure – that is, by hearing meaningful language in their surrounding environment which is not directed specifically at them – then the deaf child will need the adults in their life to give them much more time and attention in order to help them acquire language. The deaf child needs, at least initially, greater investment in order to involve them in communicative interaction. It is obvious that these interactions are most effective when they really support the communicative needs of the child. As we have already said, some parental interaction styles are more supportive and language-facilitating than others. This supportive interactional mode calls for responsive parents who are able to recast the child’s communicative intentions or know how to comment on the child’s topic of interest. And this has to be achieved continuously all day long. Every routine and every activity in which the child is engaged can be exploited to enrich their language.
Parents or other caregivers have to become aware that the language used within shared activities becomes more important than the activity itself. Whilst diapering, the dialogue with the baby has to be accorded more value than the activity of diapering in itself. When the child grows a bit older, instead of the caregiver quickly making some food after having sat the child in front of the television, it can be more beneficial for the child if they too are involved in preparing the meal. This does of course make it more time-consuming, but this time is well-spent and will be amply rewarded by the child’s enhanced communication and language.
Establishing a suitable basic communicative climate, with facilitative and supportive adults in a positive environment who invest the time needed, is the first level of help we have to establish for a deaf child. In doing this we are creating a nurturing environment in which language can continue to thrive, one which provides a fertile seedbed – and, growing on this, speech therapy (or therapy by which the child learns to listen) – can have the maximum impact. Parents who pay attention to the communicative signals sent out by their child, and who are aware how their child is functioning in the world of sounds and noise, will also integrate into their daily routines things they have seen in individual therapy with professionals, and be creative with new things they see and hear at home, in the street or anywhere they go with their child.
The third tier described by Kok is the level of the individual action plan5. Because the individual and specific needs of each child and their family are different, the assistance program needs to be tailored accordingly. It is also clear that the nature of the assistance needed also varies over time as the child grows older.
The later the diagnosis the more specific needs for education
Figure 1 uses different colours and a line indicating the time in weeks (w), months (m) and years (y).
The moment of diagnosis, as indicated by the vertical line, marks the change from intuitive to intentional parenting. The younger the child is at diagnosis and when first treated, however, the more fully the neurological auditory pathways of the child will correspond to those of hearing children. This means that language development can also partially rely on incidental learning, and parenting can be more natural and intuitive. The ‘green period’ up to the age of 6 months can be seen as ‘safe’, whereas the ‘orange period’ between 6 months and 5 years is ‘at risk’. During the ‘red period’ it is not possible, with the technology currently available, for a child to fulfil its full auditory potential. The deaf child of hearing parents will need specific education to help it acquire both spoken and sign language.
Parental support as parental empowerment
In keeping with what has been written above, the first aim of parental support can be described as empowering parents to become communicatively and emotionally in tune with their child and to help them to create a suitable basic communicative climate. This is required if the child is to develop their linguistic, intellectual and social-emotional potential and to become a full member of the society in which they are living.
During the last few years, a paradigm shift has taken place in parent guidance (see Module 4). Home counsellors have become aware that parents themselves have to be confident and capable in their own right with regard to the education of their own child, and that experts cannot act in their place. It is important that parents themselves experience success in the communicative and language development of their child. A good measure for evaluating how well home guidance is succeeding is to observe whether the parents and child regain pleasure in their mutual communicative interactions. When there is real enjoyment in the mutual interaction, once can be sure that both parties are getting a lot out of it and that the child will learn from it. Before describing some strategies that can be useful in empowering parents for their educational role of establishing a basic communicative climate, it should be stressed that working with the child alone can never be the aim of home guidance. It is true that the child’s deafness is the immediate ‘cause’ prompting early intervention and parental guidance. But the child is a part of an overall system. It is important to realize that deafness affects not only the child but the whole family. To illustrate this, imagine a mobile of the kind that often hangs above the baby’s cot. When we touch one element of the mobile, all the other elements begin to move because they are mutually connected. In the same way, the members of a family system are interconnected – not by threads, but by interactions, emotions and thoughts. This bond between mother and baby is very strong. Winnicott stated as long as twenty years ago that there are no babies, there are only parent-baby dyads.15 A baby is an existential part of a relationship.14 Without a caring adult, especially the mother, a baby will never survive on their own. It is not surprising that this close bond is most harmed by the shock triggered by the child’s deafness, especially when the mother is not deaf herself. The grandparents too, however, often experience grief and sorrow. They seem to carry a double burden. They feel grief for their child and grandchild at the same time. Very often parents complain that their own parents are in denial, denying both the child’s problem and the idea that they themselves are overly concerned, even when they see that the child is wearing hearing aids. This mechanism of denial is a very ‘logical’ one. When we are confronted with the shock of losing things we hold dear, the first mechanism that is triggered to help us cope with the situation is denial. The grandparents have ‘lost’ their perfect grandchild and have at the same time ‘lost’ their own child’s carefree enjoyment. Clearly, this denial on the part of the grandparents is their way of coping and dealing with the painful diagnosis, but it is not helpful for their own children and their grandchild. The deaf child’s brothers and sisters will be affected too, as will their aunts and uncles. Once a mother of a deaf child complained that her sister never asked this child to stay over for the night, although she did so for the other children in the family. The aunt had effectively told her, “I’m concerned that I won’t be able to cope with handling the child’s cochlear implant properly.”
Having a deaf child is not a problem that exists in a vacuum. It is a problem shared by an entire social network, and primarily the extended family. Later, when the child is going to school, deafness will also have an effect on interaction with teachers and peers and on aspects such as the teaching method or system employed.
Strategies helpful for parental empowerment
Visiting the parents and the children in their home can be a very powerful strategy in empowering the mother and father in their parental role to create a stimulating language environment for their deaf child. This is also true of visits to the daycare centre, daycare mother, grandparents or whoever is caring for the child. During these visits the home counsellor can perform different functions. Moeller enumerates six different roles.9
-Information resource: As a professional it is important to share information in a manageable and objective way, so that families become independent advocates and learners. More important than providing specific information is to help parents reflect critically on their reading input.
-Coach role: In this role the parent is in the driver’s seat with the coach sitting behind them (whereas, with the ‘expert model’, the reverse is true). The clinician uses skills of observation, well-timed input and outcome analysis to support and guide the interaction.
-Joint discoverer: Moeller describes this as the key ingredient in a partnership model. Instead of telling parents what they have to do, the home counsellor can formulate his or her idea as an experiment. The counsellor might say, “I wonder whether he would look at you if you imitated his sounds during play”. In this case we let the parent take the initiative – and the credit if it works. Undoubtedly this will boost the parents’ confidence in themselves if it proves a success. If the counsellor provides the model him or herself, parents may think that they are not able to be successful in the same way.
-News commentator: The ‘news commentator’ role involves providing objective descriptive feedback about key behaviours (as in, “I notice that when you make a comment instead of asking a question, she replies with longer utterances”). This strategy highlights what is working well with a given family.
-Partner in play: Sometimes the home counsellor will want to demonstrate a new skill. This will, however, only empower the parents if they are immediately given the opportunity to try it out for themselves and find out, through their own hands-on experience, that it works.
-Joint reflector and planner: After a home visit it is important to reflect together with the parents on ‘what we learned today’. What worked and what didn’t? This brings ongoing concerns into focus, and sets the agenda for the next session together.
Video analysis has been proven to be an extremely useful tool for parental guidance. It enables to discuss with the parents the child’s communicative development and the success of their mutual communicative interactions in a more objective way. By discussing the video together with the parents, parents are given the opportunity to become the ‘news commentator’ commentating on themselves. From experience we know that this way of working is far more effective than modelled interaction in the real-life situation.
Roughly speaking, video analysis procedures for home guidance can be divided into two main groups. Both procedures can be used on a complementary basis.
One group comprises video recordings of daily routines made at home in a non-standardized way. The second group involves more standardized recordings in what is, more or less, a home-lab situation.
Both procedures have their pros and cons. Recordings made at home are very useful in discussing real-life communicative interactions. They are, however, perceived as being more intrusive than home-lab recordings. If there is suddenly a camera on a tripod in the living room, or someone with a camera in their hand during mealtimes, or when furniture has to be moved in order to avoid shooting against the light whilst recording, then all this is felt as being more intrusive than the situation in a home lab. A home lab is an artificial living room, specially equipped for video recording. In a setting of this kind, the quality of the captured images is undoubtedly higher. Working with two or more cameras (hidden or not, as the case may be) means things can be seen in more detail than home recording allows. In this home lab, most of the interactions are play interactions as, in this setting, activities such as serving a meal tend to feel too artificial. It all depends on what we want to see and discuss with the aid of video recordings. Some clinicians are doubtful about using video analysis, thinking that parents will be resistant to (and perhaps even rather shocked by) the idea. Experience, however, has taught the opposite: video recordings are highly rated by parents, who find them very useful and informative. This does not mean that the parents find the experience particularly pleasant. Going to hospital for a scan is not pleasant either, but it is often a necessary tool – even the only tool – for effective diagnosis and treatment. And video is, effectively, the scanner par excellence for communicative development and interaction. It can show immediately whether parents are in sync with their child or not. It also easily reveals the effectiveness of their interactional style and whether the strategies they use are language-facilitating ones. It is also a very useful way of monitoring progress in the child’s non-linguistic and early linguistic development: quite often, for example, video analysis enables a proto-word to be detected earlier than would otherwise be possible.
It is important to always discuss these recordings with the parents. The time and place chosen may depend on the aims. It can be useful to look at the results immediately at home after recording some daily routines. It may also be interesting to conduct a more detailed analysis and to discuss this in a quiet place (for which sufficient time will have to be allotted).
Video analysis is, of course, time-consuming. A micro-analysis of one minute’s footage can easily take up between 45 minutes and an hour, depending on how many elements are analysed. With the appropriate tools and experience, however, the time required for analysis can be reduced considerably. It is also not necessary to analyse the entire video (in the same way that a lab blood test will involve examining just a small sample). Experience shows that this is just the same for the analysis of communicative interactions. A well-chosen sample is enough to reflect the whole picture.
Giving parents the chance to meet other parents with hearing-impaired children is another powerful strategy for helping them to cope with the new problems they are facing. There are no better listeners, and there is nothing more healing than talking to people who have had the same experience. When a child is diagnosed as deaf, this often leads to changes in the parents’ social network. When parents are grieving and feeling sad, the risk exists that some friends will be lost. Interaction with the wider family may also be affected. Expanding one’s network to include other parents of deaf children can, therefore, be very important when talking about these problems is not very easy within the existing network. As well as providing mutual psychological support, parents can also give each other practical tips for dealing with minor day-to-day problems they have to cope with. I recall one of a group of parents of very young children who had found a solution for fixing the coil of the CI by using a child’s hair-ribbon, and that the group exchanged practical solutions on how to get the children to wear the processor, and so on. We will now briefly discuss some tried-and-tested ideas for exchange between parents.
Contact parents: This set-up involves more experienced parents who are willing to act as volunteers and talk with less experienced parents of a deaf child. These parents are registered by and known to a home guidance service. This service’s counselling staff will look for the best match between two sets of parents. This scenario is ideal for parents who do not wish to be involved in a parent group but feel the need to have contact with fellow-sufferers. This is often the case when the child is suffering from a rare syndrome involving multiple problems.
Formal parent group: By this we mean a group of parents of deaf children who come together on a regular basis, with the session chaired or facilitated by a professional. Our experience has shown that these groups are most successful when the children have similar problems and are roughly of the same age. These groups offer a good balance between professional input and more informal discussions about various topics, and are very informative and healing. We have seen that sharing within a group is often less threatening than doing so on an individual basis. Everybody who works with the deaf knows that, with many aspects, a preventive approach has to be taken. Being as it is an ‘invisible problem’, the consequences of deafness are not always clear to the parents. It has also been our experience that parent groups are a good forum for sharing parents’ own ‘good practice’. Groups are ideal for exchanging teaching materials, experiences, books that parents have made with their children, and even discussing video interaction. Sometimes parents are more overt and direct than professionals in challenging each other’s thinking about child-rearing.
Informal parent group: These are groups of parents who meet on a regular basis but without professional leadership. These groups often emerge out of previous formal groups, if a particularly strong collective bond has formed and there is someone willing to take the initiative to bring the group together. And, when the children of these groups also meet up, there may be a greater chance of these parents remaining in contact. I recall a group of deaf teenagers regularly going to films together whilst the parents were sitting and talking together in the cafeteria.
Family trips: Another way to bring parents into contact with each other is to organize family trips. This gives parents and professionals the chance to also see other members of each others’ families, and provides a good opportunity for the brothers and sisters of deaf children to meet in an informal setting. During these trips it is interesting to observe how parents behave and communicate with their children during free time, meals, etc.
Family weekends: For 25 years now, special weekends have been organized in Flanders for parents with young deaf children, giving them the opportunity to meet other parents and professionals from all over the country. And the parents are accompanied by their hearing and deaf children. During their parents’ meetings, activities for the children are also organized, generally by the deaf youngsters. These weekends give parents the chance to be kept abreast of a wide range of aspects of (and different opinions about) deaf education and to be in contact with different deaf and hearing role models. For most parents, this weekend is rather challenging and elicits strong emotions. However, most of the parents say the experience is well worth while.
Mutual home visits: Another way in which parents can come together involves visiting each other’s homes; two or three families come together and take part in prepared activities with the children. This can be done in cooperation with the clinicians from the home guidance centre. Parent counsellors can help to prepare these activities. This provides an excellent opportunity, both beforehand and afterwards, to talk about different aspects of the education of a deaf child.
Specific parent group: Sometimes it can be beneficial to bring together parents from a specific background. For example, we have gained many years of experience involving a group consisting solely of mothers of foreign origin. These mothers’ culture allows them to come together in this way as long as men are not present. This mothers’ group has a weekly morning meeting together with a professional. The group’s aim is to empower these mothers in relating to their disabled child as well as having an emancipating effect.
External support for day care providers
It seems very important that parents and day care providers can work together on a congruent educational project for the deaf child with specific needs. In more and more European countries, extra facilities are created for inclusive day care programs. It is important that day care providers get enough time to consult and to discuss with the ‘empowerd’ parents how to manage daily concerns about the deafness of the child. It is trivial that the daily carers are also competent to realize a language facilitating environment. In most of the European countries, the day care providers have also access to the same professional assistance as the parents. That means that nurseries and day care parents can also be visited by a professional teacher of the deaf. They can use the strategies for help that fits most the specific day care environment. In some cases it can be encouraged to make an individual action plan together with the parents.
Which element is not a part of the basic educational climate for deaf children?
a) Specific language therapy attuned to the specific needs of the deaf child
b) Particular focus on background noise in the child’s environment
c) Taking extra time to communicate during daily routines
d) A responsive and supportive communicative interaction style
Which role of the home counsellor does not serve to empower parents in their educational role for a deaf child?
a) Role of partner in play
b) Role of coach
c) Role of news commentator
d) Role of model
Which kind of ‘family encounter’ situation seems an ideal setting for sharing preventive information?
a) A formal parent group
b) An informal parent group
c) Mutual home visits
d) A family trip
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