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Università Cà Foscari di Venezia
Facoltà di Lingue e Letterature Straniere
Tesi di Laurea
|Reproduced with the permission of the author.|
Down syndrome gets its name after Dr. John Langdon Down, clinical inspector at the Earlswood Asylum in Surrey, who in 1866 first isolated and described specific anomalies in a group of children and adults he was observing. His descriptions concerned mainly their mental delay and facial traits, that he compared to the Mongol population defining them a "regression towards a primitive oriental typology".
For this reason for many years people with Down syndrome have been given the name of "mongoloid", which very soon ended up by denoting "a person who, though mature, is still a child", or simply "an incomplete child".
While Dr. Down had tried to isolate the common features of this population, in the same years Dr. Seguin, en expert in pedagogy, started analysing the peculiarity of each component in a group with the same general characteristics observed by his colleague.
Several other analyses and attempts to define the causes and consequences of this condition followed, adding every time more details about anomalies depending on the syndrome, among which for example the relevance of the mother's late age.
In 1932 Dr. Waarsburg first declared his suspect that chromosomes could be involved in the genesis of this pathology, advancing a non-disjunction as a possible reason; unfortunately, lacking this assumption of clear and experimented evidence, its value was not properly appraised.
The turning point for a definition of the syndrome came in 1959, when Dr. Lejeune revealed in an essay to have found the presence of 47 chromosomes instead of 46 in tissue cultures taken from three patients with that syndrome.
After Dr. Lejeune's discovery, a new era for Human Genetics started: mainly the molecular analysis of genetic diseases, and further specific research led to the isolation of the number 21 as the extra chromosome at the base of the Down Syndrome (hence the other name for the pathology "Trisomy 21").
Its precise cause is a biological error during the meiosis, that is the mechanism of division of a cell into two new cells with new chromosomes: the genetic material of the new zygote is the result of a process called crossing-over, when the original two chromosomes redouble and exchange their genetic components. The error at the base of the syndrome has been identified in a non-disjunction of the chromosome 21, whose incidence has been proved to increase with the older age of the mother.
Nevertheless, Down syndrome is not always the result of a non-disjunction: according to the specific process at the base of the chromosomal variation, there are four different connotations of the pathology which are worthy to be mentioned:
It is important to underline that, while for a long time the cause of the Syndrome has been isolated uniquely to the presence of the extra chromosome 21, nowadays much more relevance and credit have been given to the integrated effect it has on the whole genome, activating or inhibiting other genes.
That would clearly explain the great heterogeneity within the population with Down syndrome, either regards their physical manifestations or the different pathological situations noticed.2
Down syndrome is considered to be the main cause for mental retardation; as for many other pathologies, it is impossible to give a definite description that includes all the different characteristics depending on it. If on one hand it is clear that there are some common features, both physical and psychological, the most frequent mistake is to think that all the people with Down syndrome have the same behaviour, the same problems and manifestations of their delay.
Today the World Health Organisation sets the majority of people with Down syndrome in the range of Mild Delay, which basically means that their cognitive structure has either a less o a delayed potentiality to reach specific competence, or a general disharmony between the various abilities themselves. What is called "metacognition", an essential component of intelligence based upon the awareness of one's own skills is actually among the weakest points in these individuals.
It seems in fact that one of the most compromised capacity in these children is not so much intelligence itself, but the knowledge of their intellective means and the way to use them. The further lack of integration between competencies affecting children with Down syndrome is the result of a deficit in connecting and co-functioning of the single abilities, which is called cognitive disharmony.3 Metacognition in this case is much analysed and studied in order to teach the child to generalise, think and reason especially in context of constant interaction, so he can learn to reflect and become aware of his choices and actions which can be thus elaborated for facing and interpreting new experiences.
Though keeping in mind that children and adults with Down syndrome are not affected by the pathology at the same level, there are nevertheless some undeniable points in common at the base of their cognitive difficulties.
Their most serious problem has proved to be memory, and particularly short-term memory, defined as the mean with which we are able to retain for a short period of time any information, image, sound and stimulus from outside and that reaches our mind through several codes of the sensorial memory.4 Not only that, short-term memory allows us to recall information and knowledge from the long-term memory's storage. Finally, memory is the essential mean for organising series of phonemes into words and thus constructing sentences on the base of complex morpho-syntactic rules.
The consequent essential connection of the short-term memory with language development is the explanation why one of the most evident manifestations and characteristics of the Syndrome is poor language and speech intelligibility.
It must be said that if the difficulties of this population in remembering and organising its thoughts have specific neural origins, as we will see later, very often there can be several other factors affecting the chance of recalling information or simply retaining in mind the stimulus. From my personal experience in the classes where children with Down syndrome were attending English lessons, I can confirm that, as well as a constant background noise, one of these reasons can be an inadequate presentation of the linguistic input, disconnected from the context or without any explanation of its meaning; this leads to an insufficient elaboration of the information at a semantic level, which increases the difficulty to retain it.
Approaching these problems and the implications they consequently have is intended to be a first step to find proper solutions or at least to advance proposals for effective interventions in the linguistic field especially, as in this case, in the field of foreign language acquisition. It is important in fact to understand which are the specific processes at the base of memory deficit, in order to realise that not remembering does not necessarily mean not knowing.
According to recent research it has become clear that learning and memory functions cannot be seen as singular systems, either in terms of their behavioural properties or in terms of the neural system upon which they rest. Along with this discovery it has been shown that in Down syndrome neural dysfunction does not affect the whole brain, but rather some sections more than others. At the moment there are more than one scientific explanations for poor memory performances in individual with Down syndrome, and in order to appreciate them all, I will quickly illustrate the functioning of the memory apparatus in our brain focusing on those aspects and processes most presumably at the base of delay in trisomic children.
Neurons are nervous cells whose function is to receive, integrate, elaborate and transmit messages5 and for this reason they are the units at the base of the nervous system's activity. Our brain has more than one hundreds billion of neurons and the number of connections they can create gets over the number of millions of billiards.
They receive the impulse from the other cells through thin branches called dendrites and transmit the same impulse – basically an electric discharge – through the axon which is covered by myelin whose function is to increase the rapidity of the passage. Dendrites' termination contains the neurotransmitters, chemical substances sent in the space (synapses) between the end of the axon and the dendrites of another cell to produce a number of different connections creating the synaptic plasticity, a clear evidence of the extraordinary possibility for man to associate, discriminate, store and organise the numerous incoming inputs.
According to Hebb,6 neurons tend to form groups of cells whose synapses has been so much reinforced by a constantly repeated stimulus that they activate simultaneously. In this process acquisition seems to have its base.
The innumerable neural connections in our brain and their flexibility according to the nature of the stimulus inevitably and reasonably gives over the wrong assumption of a genetically determined neural configuration. Even more so in the case of individuals with Down syndrome the validity of this concept should be taken into consideration, in order to avoid thinking that for these people nothing is worthy to be done because of the less capacity and functionality of their brain. As far as linguistic abilities are concerned in fact, if on one hand they have turned out to be the most deficient by comparison with social or motor abilities, there is evidence that the processes underneath their development are affected by a delay but the succession of the same processes remains unaltered by comparison to typically developing children.
Specifically, verbal comprehension is coherent with their mental age at least in their first five years, while production seems to present more problems: its first phase follows the same pace of the other children, so they start pronouncing the first words at the same mental age of normal children (but not the same chronological age), while lexical production undergoes a delay by comparison with their ability to understand. It seems in fact that one of the consequence of their cognitive delay is that the period between comprehension and production is longer than usual, and understanding the reasons can be a contribution to give the problem its precise and specific origin avoiding in this way to generalise and underestimate these children's abilities.
One explanation for the slowness in the maturation of the cognitive abilities, and consequently for their evolutive delay seems to depend on a structural factor: a shortage of myelin, the substance around the neurone which allows the information to be transmitted more quickly via synapses, can be a first reason for a general rigidity in the phase of assimilation. In this way the discharge passing from a cell to the other undergoes a slow-down and activates less mental circuits, with the consequence that the process for coding the input and elaborating the output is realised only partially or at least fragmentarily.7
Facilitating strategies based upon repetition activities are so far the most accredited ways for addressing this problem.
The other more plausible explanation for the cognitive deficit in children with Down syndrome is to be attributed to the structure and functioning of the short-term memory storage, that is either to its availability to retain a quantity of information, or to the process of keeping it in mind through articulation.8
To make this other explanation clearer I refer to the theory of Baddeley and Hitch on working memory model,9 according to which short-term memory storage forms part of a broader working memory system where information is both held and manipulated. The phonological loop is a sub-system upon which the storage of verbal information relies; it plays an important role in language development, in the acquisition of new vocabulary and possibly in reading development as well. A phonological loop impairment in children with Down syndrome would therefore have potential consequences for the development of these abilities.
On its turn the phonological loop is divided into two sub-systems, the phonological store and the process of subvocal rehearsal. Verbal information enters the phonological store and is held there in a speech-based, phonological code.10 The decay of the phonological trace, normally after few seconds, can be avoided by subvocal repetition, and the shorter and easier the traces are, the larger number of items can be held in mind.
As far as rehearsing is concerned, individuals with Down syndrome have evident problems in articulation due basically to the conformation of their tongue and their palate (the first often too big, the second too thin) and to hypotonia of the facial muscles. Alternatively it has been proposed that these children do not rehearse at all,11 and retaining the information in this case would rely solely on the phonological store, with the natural consequence of a rapid decay of the trace.
As far as phonological storage is concerned instead, three further reasons have been given to explain its impairment: the phonological representations might be noisy or degraded, the store itself might be of reduced capacity, or information is lost from the store abnormally rapidly due to unusually fast trace decay.12
Conversely, if short-term memory has turned out to be the most significant reason at the base of a delay and poor language performance, recent research has shown that once the input or information has passed to long-term memory, the chances for it to be retained for long time are very high, even when visuo-spatial information, such as positions, distance and roads are concerned. Very often in fact children with Down syndrome are able to orientate very easily and pass their peers in remembering situations, events, experience happened very long before.
The predominance of the memory in the long-term storage is confirmed by the "dual-system" analysis theorised by Nadel,13 where explicit memory refers to conscious recollection and involves verbal recall, including episodes and event's of one's life, or anything that can be taken from the past, whereas implicit memory, on the contrary, is that kind of knowledge which is not brought to conscious awareness and is expressed through behaviour. It includes cognitive skills such as learning to pronounce a foreign word or to construct a more complex sentence.
Nadel's research has proved that most forms of implicit memory in children with Down syndrome seem to be preserved, while many forms of explicit memory are impaired.
Besides the problems linked to short-term memory, we have also to consider possible obstacles in the reception of the input. Obviously verbal information held in the storage must be first of all correctly heard. Regardless of their poor verbal short-term memory, individuals with Down syndrome often have difficulty in hearing, identifying and discriminating a sound, due to a restricted eardrum and to frequent otitis caused by mucus secretions.
So the simplification of their linguistic performance is not to be attributed to just their fragmentary thought organisation, but also to the omission of sounds or even parts of the words or sentences which they cannot properly hear and thus reproduce. It has been shown in fact that children and sometimes even adults with Down syndrome tend towards a rather telegraphic speech where they use just the keywords in a sentence, that is nouns and verbs rather than articles, auxiliaries and prepositions; besides the explanation about their less obvious meaning from the semantic point of view, another significant reason seems to be that they are less salient acoustically,14 and in the length of a sentence they tend to slip especially for their shortness.
While awaiting that further research may deepen the knowledge of the deficits, it is clear that a method for teaching them a language and, in this case, a foreign language has to consider the specificity of all these complications and a way of addressing them by either facing and reinforcing the weakest points or by finding alternative strategies.
For example, one proper intervention for hearing impairment and for enhancing children's articulation ability is, besides the Speech and Language therapy, to teach them phoneme awareness by playing rhyme games or with specific exercises such as isolating single sounds – the initial or final part of a word – and making the children repeat them, or class a series of words with the same initial or with other common characteristics.
Using then visual rather than auditory input inevitably facilitates comprehension because of the easy connections that the child can make between image and meaning and because the visual channel seems not to present the same deficits as the auditory one.
When deciding on a specific methodology the importance of presenting the input loudly and clearly should never be neglected, and that no particular noise should interfere or disturb the perception of the auditory stimulus.
As I will examine in chapter 3, an effective strategy for enhancing language visual comprehension is the use of gestures along with words, especially in the very first years of the child. From those used just to indicate to those representative of a specific action (drinking, sleeping, eating...) every sign is essential to make the information "visible" to the child and to act as a transaction in the process of language acquisition. I can anticipate that according to the research made with several families who used this method with their Down syndrome children, in most of cases, once the child has learnt to pronounce and use in the right context the word he has seen associated to a gesture, he progressively stops using the sign on behalf of the word.
Moreover, the information, either visual or auditory, should always be strongly connected to reality and have a marked authenticity in order to be easily found in the environment and function as a further motivation for maintaining their usually weak attention and concentration especially when comprehending abstract concepts is concerned.
In parallel with what is more effective with typically developing children, learning to read has turned out to be a fundamental strategy for enhancing speech and language also for children with Down syndrome, as a relevant opportunity to learn words by not simply listening to them.
Reading gives them the chance of improving their vocabulary and above all to stimulate their poor knowledge of grammar and syntax: in fact for the nature of the brain problems analysed above, particularly the slowing down of the synaptic growth around birth, children with Down syndrome often do not possess the necessary brain architecture for structuring language stimuli to spontaneously construct grammatical knowledge.15
As we will see in the next chapter, reading and particularly early reading has shown to be a very successful strategy also for enhancing a situation of bilingualism.
It is fundamental as a whole that the child finds an environment where constant stimuli may lead to new experiences, where success in any field can be valued and where delay may be seen as just a slower way rather as the impossibility of reaching the aim. Understanding a deficit depending on a specific pathology means first of all to walk at the same pace of that person, respecting his major need of time and being always curious and open to the discovery of his predisposition, without over-stimulating or expecting that he reaches competence in the time and in the way we would like.
The sum of the deficits mentioned so far, the consequent delay they bring and especially their effect on children's behaviour – introversion, poor speech intelligibility, tendency to give up communication, apparent impossibility of keeping up with the scholastic instruction of their peers – led particularly from the beginning of the Nineties to consider these children as "idiots". The natural solution was then to isolate them in the so called differentiated institutes or into hospitals where stimuli were presumably very poor and underestimating their real capabilities. Even outside institutionalisation, children and individuals with Down syndrome were accepted with diffidence and scepticism as very few studies were being made on this pathology and on the ways to address it. This led to a general feeling of frustration first in the child and also in the family and the less or at least the minor quality of the care given to them were certainly one of the reason for their shorter life by comparison with the current average of life for individual with Down syndrome that is 45-46 years, with a surviving of 13% between 45 and 65. Frustration can happen also today as well as incomprehension and misunderstanding of the most basic knowledge of the syndrome,16 even if the attitude towards individuals with Down syndrome has noticeably improved towards acceptance, inclusion, respect and the deficit has become a challenge for improving the knowledge and for finding always new solutions.
Before describing the latest significant law for the disabled people (Legge Quadro 104/1992) and in order to understand and to better appreciate it, I will mention the most salient stages of the passage from the institutionalisation to the full integration in classes, with a special focus on the presence of the Support teacher.
From a juridical point of view, integration is the right of the disabled pupils to receive the scholastic service in the mainstream schools as well as the other typically developing children, and the duty of the public school to guarantee differentiated programs of education and teaching, in accordance with the special needs of these children, either physical, or psychical or psycho-physical.17
Integration in mainstream schools has always been a long and difficult process for several reasons that have hindered its progress, starting from the often neglected and essential need to understand the real conditions and potentialities of the disabled students, to the underestimation of how the exclusion could influence their emotional dimension, affecting their self-confidence and consequently their scholastic skills and results.
Undoubtedly the adaptation itself of the scholastic structures to the presence of disabled students initially delayed the process of inclusion, worsened by the scarce application of the law even when it aimed at making compulsory in schools what was strongly felt as a right by parents.
After the dissensions in 1968 which addressed also the problem of inclusion of disabled children in mainstream schools, the first real step is considered to be the Law 118/1971 which sanctioned that
"...the compulsory instruction [of the children with handicap] must be offered in normal classes of the mainstream schools, with exception of cases of severe intellective deficiencies or physical impairment that can prevent or make extremely difficult the possibility of learning and being included in normal classes".
Though important this law certainly is especially for extending this intervention to a larger range of disability, it is still limited to situations of mild handicap; as it can be found then reading the whole text, it focuses simply on the disabled student without considering the scholastic community around him, giving relevance to the process of learning and not so much to being included.
The consequence of this first law was a massive and "wild"18 passage from the private institutes for disabled children to mainstream schools, which of course were not ready to receive them lacking either of concrete and specific structures, or of administrative interventions. Aiming at a deep understanding and thus managing the event, the Minister for the Public Instruction in June 1974 appointed a commission of experts, members of the Parliament, teachers, parents and representatives of Associations for Handicapped people to attentively study the topic of special education in Italy and to give indications and proposals on how to face the problem.
As a result the following year the Commission Falcucci – after the name of the Under-secretary of the Public Instruction – produced a document called Relazione Falcucci which confirmed the possibility of including children with special needs as long as deep changes in structures, methodologies and contents occurred in the Primary School. Above all it stated that children with disabilities should be the protagonists of their own development and that the school was expected to consider their potentialities first and secondly their pathology. It underlined the importance of constant agreement between the schools, Health Services and public authority for the stipulation of the programs.
Unfortunately the alacrity of the Commission's work and analysis of the topic did not correspond to a strict application; on the contrary, the important proposal of extending these innovations at least to every scholastic district stated by the Relazione Falcucci was reduced by a Circolare Ministeriale of the same year which recognised the inclusion of children with special needs only in a restricted number of schools of each province.
Nevertheless both these sanctions undoubtedly brought some order and rationality to a difficult and often inconclusive adhesion to a great change.
What was greatly started by the Law 118/1971 was amplified and improved by the Law 517/1977, particularly with articles 2 and 7 by establishing conditions, means and objectives of the inclusion of disabled people: it made the educational programs in schools less rigid and more flexible and open to activities of support and integration for a maximum of 160 hours per year. Though profitable by each student in the class, this model was an essential starting point for children with handicap who were inevitably cut off in a school with non flexible programs and no particular attention for the individual needs.
The relevance of this Law is mainly that, besides being specified that within the programs mentioned earlier, "the school creates integration activities on behalf of students with handicap", for the first time the need of an extra teacher assisting the disabled student was declared.
Though far from considering the presence of the Support Teacher as we are used to today, the article declared the need of extending the responsibility for inclusion not only to programs or structures, but also and significantly to the teachers themselves as the personnel more in contact with the disabled child.
The final most important step in claiming the rights of the disabled students was the Sentenza della Corte Costituzionale n. 215/1987 which focused on the need of assuring the possibility of attending the Primary and Secondary school as well as the University for students with handicap, making unconstitutional the article of the law of 1971 that simply and generically intended to facilitate this frequency. It then stated at least three principles that are worthy to be mentioned: scholastic integration as a guaranteed constitutional right essential for the development of the handicapped student's personality no more bound to segregation and consequently regression from the educational point of view. Secondly the importance of the continuity in education to avoid any artificial interruption in the processes of integration, and finally the full right of being integrated also for students with severe deficits, with the duty of trying to overcome the obstacles which were too often considered insuperable by examining and experimenting all the means that were thought to be effective for this purpose.
Such principles are relevant in that they establish a non-returning point, giving the label of unconstitutionality to any attempt of returning to cases of differentiation and segregation.
The presence and the competence of the Support teacher has been a nodal topic as well. When the law sealed the passage of the disabled students from the differentiated institutes into mainstream schools, integration had to consider very soon the relevance and need of a person who could understand ad follow the specific demands and deficits of the student. Along with a wild pouring of children into a rather frail and unprepared school, initially this problem was solved by choosing support teachers from personnel who did not have any specialisation, or knowledge or motivation to adapt to this new condition.
The teachers coming from the institutes attended by disabled children till that moment were the only ones who had experience in this delicate field, and for this reason courses for obtaining titles of specialisation were established, with just three separate addresses at the beginning (for phsyco-physical deficits, for hearing impaired or visual impaired children), an then towards a pattern of polyvalent organisation, in order to face and cope with a wider range of disabilities.
Along with the teaching personnel a collaboration with clinical institutions were felt as essential for a deeper understanding of the complexity of the problem, but most of times the Circolari Ministeriali or the Ordinances were ignored, either for the great variation in conventions, programs and attitudes that such a change necessarily required, or for fear that the position of the curricular teacher was in a sense diminished by the presence of external or internal assistants.
It is with the Legge Quadro of 1992 that the organisation of the support teacher's service is finally and clearly regulated, by assuring this presence for all the students with handicap. The reduction of the number of pupils in classes attended by disabled students has undoubtedly improved the process of inclusion and refined the quality of assistance by giving greater attention to special demands.
In 1998-99 the University established a new degree in Scienze della Formazione Primaria, initially to train teachers for the primary school, and the following year for secondary schools as well. This academic course provided the chance of studying special education, by passing six extra exams such as Special Didactic, Valuation of the Disability, Psycopathology of Learning Difficulties, Special Pedagogy, all concerning knowledge about inclusion and handicap.
Actually, there are still other associations and institutes that provide courses for the specialisation, such as those promoted by FADIS19 or by Regione Veneto, but given the less competence they have about didactic programs by comparison to an academic structure, it seems that the most accredited certificate is the one obtained after a degree in Scienze della Formazione Primaria, or the specialisation given by SSIS courses.
Interestingly, both these services for obtaining the certificate are not free from reciprocal criticism: if on the one hand, as mentioned before, private institute for their specific duty of assistance to children and families with handicap probably do not possess the right aptitude to organise courses for teachers, on the other hand most of the curricular subjects in the academic plans have a rather medico-clinical mark, focusing in this way on the pathology and not on the achievement of alternative teaching possibilities nor on the potentialities of the subject.
Currently it seems that most of the biannual courses provided by private associations have been stopped whereas the gap between the need for support teachers and the increasing number of disabled students is covered by employing curricular teachers who are exceeding the lists, and who are expected to attend intensive – but sometimes too brief – courses promoted by the Legge Finanziaria of 2003.
It is clear that the presence of teachers with a completely different specialisation, sometimes lacking in real motivation to work in this area can be problematic first for the necessary synergy between teacher and pupil, but above all for the very quality of support and guidance throughout the process of scholastic integration.
If we want to understand how inclusion and teaching children with handicap is organised today we cannot stand apart from this Law, which regulates the assistance, the social integration but also the rights of the disabled people.
I will isolate the text as far as instruction is concerned, but also show how according to several parents and members of Associations this law often deals with specific topics only superficially and fractions some other problematic aspects with the risk of missing the common view and objective to face and be successful about them all. Moreover, they agree in denouncing that the rights that should belong to these people are seen too frequently as just a chance depending on the availability of local authorities rather than a compulsory service to be guaranteed.
It is article n.12 that deals with the right for instruction and education and it immediately states that this cannot be hindered by either learning difficulties or other deficits deriving from handicap.
Comma n.5 mentions the documents necessary for the certification of the disabled student, which we will examine in the next paragraphs, that is the Functional Diagnosis for the identification of the level of handicap followed by the Dynamic Functional Profile, which by describing the specific characteristics of the student connected to his handicap, highlights the difficulties deriving from it and the chance of recovery, but also the dispositions of the student that are worthy to be given prominence, supported and stimulated, according to the cultural choices of the family. As we will see later on, for the compilation of these documents either families, schools or local health services are involved.
The agreement between the authorities, the scholastic and paramedical personnel is largely underlined in the law, especially when mentioning the Accordi di Programma made by all of the entities each in its own competence, in order to create programs concerning the education, rehabilitation and socialisation of the student, and also the integrated projects which involve either schools and extra scholastic activities.
Experimentation then is mentioned as a support for the didactic activities, and though rather generically is seen as a relevant contribution to the process of inclusion.
As far as support teachers are concerned, they are described as specialised and as owners of the role of teaching together with the regular teacher. She or he necessarily collaborates in preparing the didactic programs, in following their application and testing, and in verifying the effectiveness of the interventions made with periodical counselling with parents but also with the other teachers.
Their training is regulated by article 14, which deals with the acquisition of a proper knowledge about integration; a support teacher can be qualified to work with a special student if he or she possesses the certificate of attendance of the courses and exams for the support of the handicapped child.
Three articles are dedicated then to the presence of the Gruppi di lavoro which must be operative in every didactic circle and composed by teachers, operators of the local services, parents and even students who collaborate with the didactic initiatives for the integration of the student; on a larger scale the institution of another Gruppo di lavoro, formed by a technical inspector named by the provincial director of education, experts from the local health service and from the most representative associations in the province aims at counselling and making proposals to the director himself, advising and assisting the schools.
Finally, as far as testing is concerned, on the Individual Educational Plan it must be mentioned the disciplines which have required an integrative support and what has been done in substitution or completion of the curricular subjects.
Examinations and tests are prepared in accordance with the potentialities of the student and considering his initial level of knowledge, in order to precisely check his progress; if necessary, a longer time for written tests is given as well as the presence of assistants (See Appendix to Chapter 1 for the text of the Law concerning scholastic integration).
After the local health service ASL has certified the disability of the student with the description of the nature and degree of the handicap, the certification has to be delivered to the family who gives it to the school.
The disabled student benefits by the collegial work of the Gruppo Operativo, formed by the Head Teacher, the curricular and support teachers, the operators of the Unità di Valutazione Multidisciplinare of the Local Health Service, by the operators of the Assistance and Educational Service (a neuropsychiatrist for children and a therapist for the rehabilitation) and by parents assisted sometimes by a representative of the association they are members of.
For obvious reasons of privacy, during my visits in the schools attended by children with Down syndrome I was not allowed to see their Educational Plan.
From my personal point of view and specifically for my research I found quite interesting to read in a text20 but also rather thoroughly in the Web, a general criticism to the structure, the aim and the organisation of those documents so important for the description of the child and for his integration in the school. Before proposing another form of Functional Diagnosis the author shows the clear common denominator of several aspects which have been fragmented in the document in a useless redundancy, and basically highlights the importance of considering the disabled individual not as list of deficits and useless hopes for the future, but as a person who undoubtedly has potentialities to be stimulated and encouraged.
The most inappropriate aspect in the opinion of the author is the markedly sanitary hegemony21in the compilation of the document and its strong technico-clinical mark: it should on the contrary focus on more pragmatic definitions of the student's functionality, which cannot be provided by just the local health services, who have a limited knowledge of the student. The compilation should be more collegial and collaborative, based upon information coming from and directed to the scholastic apparatus which is undoubtedly the closest to the child.
The characteristics of the student must be obviously complete and detailed, but are to be necessarily linked to his scholastic life, either from the psychological point of view, or in terms of socialisation and teaching/learning aspects. Specifically, in the alternative proposal of the author more prominence is given to the emotional and affective aspects, providing a section for itself which invites the compilers to collect contents about the child's relationship with the teachers and the mates, his behaviour in class and at home and the most salient psychological aspects of his character.
Finally, if the aim of the certification is a proper and effective way for integrating the child in his class, inevitably attention should be focused on drawing a parallel between the program for the class and the scholastic route the child is following, considering either the points in common, or the most evident differences due to the special need of the child.
With regard to this aspect the author underlines the importance of integration also in the most physical sense, disapproving those cases where the child remains isolated with the support teacher in another room playing completely different activities by comparison with his mates in the class.
I mention this observation of the authors because my personal experience in the classes has made me reflect on these very points and find a slightly diverging view, as I will explain in chapter 5.
On the contrary, I perfectly agree with the author's reproach for the abstraction and distance from reality found in the document, which too often hinders the process of finding proper solutions for the child, and which only satisfies the need for a formal document as a reference point for the Institutions, normally too generic and unaware of needs, progresses and difficulties he experiences in his everyday life at school and at home. I personally feel free to agree with his conviction that the child should be considered as a complex individual from the psychological point of view, and not uniquely as a student who is capable or not to do what we expect him to. And as far as "potentialities for the future" are concerned, the Diagnosis still talks too much about perspectives that the child shows to have especially in a clinical vision, whereas it is not clear how to construct day after day specific and individualised activities that may contribute to gain the objectives within his reach. In this sense methodologies and didactic programs should be more involved and examined always maintaining the connection between the synthesis of the data about the student and the concrete short and long-term objectives aimed at by the school.CHAPTER 2
In this second chapter I will deal with bilingualism as a situation experienced by children with Down syndrome. The analysis aims at demonstrating that the double exposure of a child to two different languages is not only a prerogative of typically developing children but also, surely with some slight differences worthy to be mentioned, a situation lived in several families with a trisomic child.
As I am perfectly aware of the controversy surrounding bilingual education even when typically developing children are concerned, and in order to give as much up-to-date-information as possible about the cases of trisomic children, I will first describe the most diffuse and significant views about the commonly feared difficulties or even damages often thought to be a consequence of bilingualism in young children. Secondly, aiming at giving the specific cases of children with Down syndrome a scientific point of view, I contacted some of the most known experts in speech and language pathologies and experts about Trisomy 21 to appreciate their opinion about the possibility of raising trisomic children as bilinguals.
At the same time, as can be easily guessed and anyway confirmed by the experts themselves, I realised that in similar situations the final decision is always left to the parents of the child, who best know the child's capabilities and are aware more than any others of the personal motivations for growing the child with two languages. For this reason, and given the very few references about this specific topic either in the Web or in bibliography as a whole, I found that the most effective and accredited way of getting information and opinions was to ask directly several families I came to know during my research by writing to Down syndrome Associations and let them report their personal experience of bilingualism with their trisomic children. By giving them a questionnaire to fill in I wanted to focus on precise aspects of bilingualism as well as stimulating extra information difficult to be found in texts.
According to the linguistic phenomena the experts refer to with this term, bilingualism has various definitions, which can be resumed in the ability to master two different languages without relevant interference between the two linguistic processes. Nevertheless for the situations I will describe and because of the difficulties children with Down syndrome have in almost all aspects of communication, in a scale of definitions of bilingualism, I necessarily include the lower end of the scale, where it is defined merely as the possession of at least one of the language skills (listening, speaking, reading and writing) even to a minimal degree in a second language.
The age and the context in which the second language is learned may vary noticeably, even though the process of a double linguistic exposure most of times starts from the very early age of a child, while the factors at its origins can be either the different nationalities of the parents, or a long period spent abroad by a monolingual family, or even the presence of a foreign-speaking person in the family, generally a nanny.
The effects depending on bilingualism are a nodal aspect which, though the general attitude has become increasingly positive towards it, seems not to have accommodate all the experts in the field. The exposure to two or even more linguistic codes from the beginning of a child's life while offering him a wider range of possibilities to express the same thought can be nonetheless confusing and affect the development of conceptualisation, and for this reason up to the 1960s bilingualism was associated with either a condition of intellectual inferiority or a cause of language handicap and cognitive confusion.22
Many recent studies have finally demonstrated that bilingual children exhibit a greater sensitivity to linguistic meaning and are more flexible in their thinking by comparison to monolingual children.23 More in detail, the aspects which evidently improve with the exposure to two different languages concern the metalinguistic development of the speaker, who more than monolingual peers has the opportunity to realise the structure and functions of the language itself, and so acquires a greater ability to manipulate it for thinking and problem-solving. And even the contested major possibility of labelling an object or a thought for a bilingual child, it has turned out that the early separation of linguistic form from meaning seems on the contrary to lead to a more analytic orientation towards the substance conveyed by language, enriching in this way, rather than retarding, conceptual development.24
The controversy about the validity of bilingualism becomes even more significant when the children who have the chance of experiencing it are affected by Down syndrome. It is curious to notice in fact how this particular condition is finally getting over suspicion to such a point that typically developing children are considered even lucky for the possibility they are given to know two languages from the first years of their life, whereas the same situation for a child with Down syndrome seems to cause scepticism and sometime a veiled but diffuse confidence that this child does not possess the capability to learn and communicate in two different linguistic codes.
For this reason when bilingualism is associated with an individual with Down syndrome we can expect to hear once again the negative effects it could have in cognitive development together with the idea that learning two languages for a trisomic child can be very hard if not deleterious. This assumption tends to be emphasised when the child is very young and seems not even to be aware of being exposed to two different languages. This fact is however mentioned by the Threshold hypothesis by Cummins, which explains or at least makes sense of the apparently contradictory results of children's bilingualism. The hypothesis proposes that that there may be threshold levels of linguistic competence which bilingual children must attain in both languages,25 either to be able to benefit the positive aspects deriving from bilingualism or to avoid being affected by cognitive disadvantages consequent to a unclear distinction between the two codes.
That is why the possible position of the child below the first or the second threshold level – often imputable to his young age – can be easily but erroneously interpreted as the incapability of the same child to manage in his future two different linguistic codes. Even more so for children with Down syndrome, whose passage from a level to the other can most probably require a longer time: though frequently this fact may appear it shouldn't nonetheless induce to think that the process is not at their reach.
Conversely, my personal opinion that bilingualism should not at all be contraindicated for trisomic children is reinforced by the neurological explanation of its most relevant benefits, such as an increased mental flexibility. Going back to the premises of the previous chapter, in fact, this is the result of a greater number of neural connections in the brain due to the need to decipher more linguistic input, for analysing either semantics or syntactic structures. If on the one hand this process especially in its first phase can be more requiring and take a longer time, on the other hand the bilingual child does have the possibility of choosing between two languages the easiest words or structure for expressing his needs or for communication in general. Not only that, the switching mechanism bilingual children have to apply when passing from a code to the other renders them inevitably more flexible in thought.
At any rate, though different levels of competence are gained by bilingual speakers, in most of the specific cases of children with Down syndrome analysed here, the objective of their bilingualism is not a higher level of language competence – context-reduced and cognitively demanding – but rather a basic ability to talk within the family and the community around. Though many times the parents refer to them as perfectly switching from a language to the other, in fact, it is clear that a basic interpersonal communicative skill (BICS) is aimed at rather than a cognitive academic language proficiency (CALP).
Experts' responses about the chance of raising a trisomic child as a bilingual are either taken from the e-mails I exchanged with most of them or by interventions found in a web site concerning the linguistic aspects in Down syndrome26; in just one case the opinion of Niklas Miller and Sam Abudharam is taken from a book edited in 1984.27
By their own admission, the viewpoints expressed by the experts are the result uniquely of their personal experience in the field of Down syndrome and particularly in speech and language therapy, as there is not enough written about this topic to confirm or deny their positions, to such a point that sometimes their assumptions end up by being adjusted or even changed when faced with a clear evidence on the part of the parents, as happened in the first case that I will mention. I find the following intervention particularly significant and emblematic of the importance of a pure and genuine practical sense when encountering and understanding the need of a child is needed to find the most probable solutions for him and his personal realisation. The importance of an exchange between experts and parents is in my opinion the most useful to complement the different views between the people who live closest to the child who need all the same scientific help, and the professionals who are specialised in these fields, but who obviously cannot have a complete perspective of the child.
This is what emerged from an e-mail exchange between a mother who started a thread abut this particular experience and a specialist in Down syndrome. The confrontation is rather interesting for either the initial and final position of the expert, or for the description by the mother about the very simple and natural reaction her daughter had when exposed to two languages.
The professional describes in detail the various steps a child has to follow and the competence he has to possess – cognitive, syntactical and grammatical – when trying to learn even a simple structure such as, for example, the possessive form: given the difference between languages of this same structure, the process would be definitely more complex for an individual who is already experimenting deficits in language and cognitive development, not to mention the difference between simple comprehension and production, which requires longer time even for typically developing bilingual children. The conclusion promoted by this expert is not necessarily to preclude a second language for a child with Down syndrome, but to start with just one code, and to introduce a second language only when the basic linguistic development has successfully started.
Though respectable this opinion certainly is, I find that the answer given by the mother could be taken as a disarming and exhaustive example to solve frequent doubts about the reaction of a trisomic child to a double linguistic exposure. The effectiveness of the "method" described by the mother in reply is the result of the observation of the natural linguistic behaviour of her daughter faced with two different languages: all the problems and difficulties linked to the structure of a tense, previously mentioned by the expert, were obviously not even taken into consideration by the child who simply started speaking the two languages by presumably just listening to them. The expert's purpose to wait until the child becomes more confident with one language is in her opinion the easiest way to cause problems because in that very case grammatical analyse and translation competence would be mostly needed, especially when having to compare and manage languages with markedly different constructions.
The secret of an early learning of two languages in fact seems to lie on the unawareness of the child that she is hearing two different codes, as in his mind it is presumably "all language". The conclusion of this practical mother is that though her daughter is not able – or was not able at the time of the exchange – to make complex speech, she has nevertheless the capability of understanding and expressing herself in both languages.
In three more cases, though confirming the possibility for a trisomic child to be raised as a bilingual, the experts' viewpoints agree with focusing on one language first. As stated by a specialist from the bilingual Philippines, Dr. Fernando Alejandro Ligot in fact the education of the child, especially when very young, should be taught with just one linguistic medium, in order to avoid confusion and to facilitate the learning of the most used language around him: as well as the linguistic input frequency, the other criterion for choosing the language to be used with the child should be also the facility and easiness he personally experiences with that specific language, and to explain this assumption this expert draws a comparison between two rather different languages, English and Spanish, which differ mainly in the possibility of reading and pronouncing them as they are written. Clearly a language such as Spanish would be much easier to manage because of its coherence with the written code, so it would be more reasonable to choose it as the main language to use with the trisomic child who only after consolidating its knowledge would be ready to learn a second one.
The same position comes from Niklas Miller and Sam Abudharam (1984) who state that intervention for children with speech and language deficits should initially aim at developing communicative proficiency at least in one language, as a child is more likely to be successful at acquiring a second language if development in the first one has been maximal. When the progress in one language in fact is fully exploited, an increased realisation of its positive connection with cognitive development is likely to be gained. These authors talk about dissipating the potential of a child with limited proficiency when inducing him to learn two conflicting codes and for this reason they do not promote this as the most efficient teaching strategy. Nevertheless they take into consideration the possible need for a child to learn two languages simultaneously, and in this case it is absolutely necessary that he is offered a clear distinction regarding who uses what language and where that language is used.
As regards the awareness that experts about problems and advantages bilingualism for children with Down syndrome can produce, the general view is basically positive and at any rate conscious that the experience made by parents is the most accredited confirmation. Several of them agree in suggesting the most effective ways of maintaining bilingualism and in assuming possible delays or difficulties. Without any systematic case study made with trisomic bilingual children, some of the experts' opinions have emerged after just meeting or simply hearing children or adults with Down syndrome speaking two different languages: Dr. Sue Buckley, probably the most known professional about speech and language in trisomic individuals, declares that in her frequent travels around the world she has found cases of competent bilingualism in children with Down syndrome who were able to switch from English and Welsh, English and French, English and Japanese and what's most interesting, from English and British Sign Language, as in the case of two trisomic twins with profoundly deaf parents.28
As confirmed by parents, the general and presumably most effective training of all these children seems to have been the one person/one language system, where the distinction remains constantly clear by comparison with cases where the same parent speaks both languages or where the language spoken at home is different from the one spoken outside. Though useful and used this last method may be, also I am convinced of its slightly less validity in that the exposure of a different language outside home is nevertheless often filtered by the presence of a parent close to the child: with the exception of the school in fact, we don't have to forget that in most occasions these children need to be accompanied by parents or care-takers in their life outside home and that this could mean sometimes to have an immediate intervention in communication if the child finds himself in difficulties.
Secondly, Dr. Sue Buckley is openly in favour of the use of signs as a reference point in the translation of a name from a language to the other; as we will see later on, the topic of signing while supported by a number of experts is nonetheless a crucial one because of the instinctive linking of its use to the needs of deaf people. Conversely, in her personal opinion, signing in a bilingual context does markedly contribute to decrease possible anxiety on the part of both parents and children when communication seems to become too difficult.
The quality of the environment around the child in fact has great relevance: learning a language depends much on the kind and the quantity of input the child receives from parents but also from the world outside. Even more so with trisomic children experiencing bilingualism, whose linguistic stimulation has to be stronger and paradoxically more patient and less exigent, because of the longer time needed to acquire and the usual more marked difficulty in maintaining and enhancing the quality of their linguistic performance. For this reason the importance of encouraging the child's capabilities and predisposition should never be neglected, by augmenting the input when a particular situation or activity seems to amaze him, and stopping or decreasing when he shows to be tired or confused.
If Dr. Buckley can mention cases of bilingualism between such different linguistic codes, it is not difficult to agree with her positive attitude especially when thinking of particular situations of bilingualism – whose validity I can personally confirm from my own experience – that come from the use of the national language and the dialect of one's own city. Leaving apart the different views about considering a dialect as a real language at the same level of the national one, the cases of three trisomic friends of mine – whose age ranges from twenty-five to thirty-five – are further evidence that learning two different linguistic codes is not at all impossible for them.
This is also the observation of an Italian expert in Down syndrome, Dr. Nicola Cuomo, who, as well as confirming the success of many cases of trisomic children learning a foreign language, mentions to me situations of Sardinian trisomic children who use either Italian or their dialect which is well-known to be as different from the national language as English could be from Italian, in vocabulary, syntax and pronunciation. Moreover, he is aware of various cases of children from Puglia who perfectly comprehend and speak more than one dialect: this is due to the diversity of the same dialect even between adjoining small villages in that region and to the chance these children had to learn them by playing and attending parents or friends living in towns nearby.
The same concept is at the base of the observations made by Dr. Miquel Siguan, who writes from the University of Catalunia, a bilingual region where Castillian and Catalan are normally spoken. When describing his position about bilingualism and Down syndrome, he specifies that initially the education for disabled children was made in the main language, that is Spanish, and even when Catalunia gained a greater autonomy and its government started promoting the use of its own language, again only one language – Catalan this time – was used to communicate with disabled individuals in institutes or educational centres. This decision was in accordance with the general belief that learning two languages was above the capabilities of a handicapped person; when the use of Catalan as the unique language spoken with disabled was sanctioned, Dr. Siguan expressed in a conference his disapproval about this decision, in that excluding them from using both languages spoken in their country would have meant reducing the possibility of being involved in the life of their society and partially of their families.
Consequently the opinion of this expert is that the trisomic child, surrounded from the beginning by people speaking two languages separated by a system of distinction programmed for him, will naturally learn to use both, though certainly with greater difficulty and in a longer time by comparison with typically developing peers. Interestingly, when this doctor expressed his strong perplexities about using just one language with disabled people in a bilingual region, he provoked a reaction of surprise and scepticism, as a clear demonstration of the difficulty that even the world of experts has very often in trying to conceive a natural and right inclusion of handicapped individuals in society.
Curiously, I mention this specific intervention because Dr. Siguan's positive opinion about bilingualism changes radically when foreign language at school is concerned for children with Down syndrome and also when the use of sign languages is mentioned for enhancing mono and bilingual communication. In his opinion in fact, there is a great difference in motivation and even necessity when bilingualism is concerned by comparison with a foreign language as a curricular subject: the early exposure to different linguistic codes of a child belonging to either a bilingual community or a bilingual family where the parents are of two different nationalities is to be considered natural and appropriate especially when it is taken for granted that the child has the right to be integrated in family and society; the process itself of double language acquisition will be easier thanks to the frequent contacts with both languages. A very different case is instead the one concerning a foreign language at school, that is a language which – in Dr. Siguan's opinion – has nothing to do with the everyday life of the child and where the teaching would obviously be based upon strictly academic methods. Coherently with some information about foreign language in Spanish schools given to me by a member of a Spanish Down syndrome Association, this subject is not always conceived to be taught to disabled children on behalf of more relevant subjects: keeping in mind the renowned strict and loyal adhesion of Spanish population to their own language, it becomes easier to understand Dr. Siguan's opinion that evidently nobody would see the utility of teaching a foreign language to a child with Down syndrome if that language does not belong to the environment where he lives.
The method of asking directly the parents of trisomic children about their experience has turned out to be the most trustworthy in that, as well as receiving authentic and up-to-date information, I had the possibility of having extra comments at the end of the questionnaire.
The availability of these families – 18 in total – has been immediate and constant, for the very reason that they were the first to advise how little is actually written about this topic, and above all for their deep interest in a situation they are personally living; the questionnaire they filled in was absolutely anonymous and concerned several aspects of bilingualism, from the purely emotional facet this situation necessarily brings, to the most technical information of how a bilingual situation is created and maintained.
The provenance of the questionnaires has turned out to be very heterogeneous, in that only two questionnaires are from Italy (Roma and Pisa), four are from New Zealand and two from Holland, while the remaining are from England, USA, Sweden, Japan, Luxembourg and Australia. In most cases of bilingualism English is one of the two languages spoken. In one case the bilingualism is between the official language of the country, Holland, and a dialect spoken in the same nation but completely different from Dutch. Though personally convinced that dialects in general can be considered as real languages, but having decided to limit the research to just bilingualism between national languages, I made the exception of including this dialect spoken in Holland, even if either its functioning or its diffusion in the country are unknown to me.
There are then two cases of a brother and a sister, both affected by Down syndrome whose bilingualism is between English and Maori: their case is even more curious and significant of the differences within trisomic individuals, in that the two questionnaires present variations in the answers although the two children are growing in the same familiar and national context.
As far as the two languages spoken in the family, interestingly, there are three cases of "trilingualism", the first originated by the simultaneous presence of the two parents' different nationalities and the permanence of the family in a specific place where a third language is spoken either by the community around them or by a native-speaker nanny.
The second case is the result of the two languages spoken by the parents and a third non verbal system, that is Sign Language. I personally leave the label of "language" in this last case because part of the Signs used by this parent belongs to Australasian Sign Language, the system used by deaf people, which like all the other Signs for deaf, is universally considered as a real language.
The third case concerns a girl with Down syndrome grown up in Luxembourg, where German, French and Luxembourgish are spoken: though not at the same level, this girl seems able to speak the three of them.
In summary, besides the languages just mentioned, those that alternate with English are evidently Japanese, Italian, Swedish, Turkish, French, Swiss German, German and Mandarin, but there are also a case of alternation between Spanish and Dutch, and Czech and Slovak.
As regards the age of the children, 12 girls and 6 boys, most of them are rather young, resenting the age of the first words, with two surprising cases of less-than-one-year children. For this reason some of the questions about these children's performance in the two languages could not be completed, though their experience remain a clear evidence of how bilingualism can be introduced in a child's life from its very beginning, overcoming the fear that the Syndrome can hinder or preclude the chance of learning two languages simultaneously.
There are nevertheless 5 cases in which children are 10 or more than 10 years old, (one case of a 25-year-old girl) and these data are even more significant for my research in that they demonstrate how the long process of growing a trisomic child as a bilingual can and actually did end up by being completely successful; at the same time they work as an encouragement for those families who, at the very beginning of their children's education, are sometimes uncertain about teaching them two languages.
As emerged very soon from most questionnaires, the main reason for growing a child with Down syndrome as a bilingual is the different origin of the two parents. The need and will to completely involve the child in the family life has turned out to be the only valid alternative to denying the child the possibility of communicating with both parents and siblings, or even with that part of the extended family – grandmother, grandfather, cousins – who speak one of the two languages.
Secondly, as happens for typically developing bilingual children, there have been different reasons for a trisomic child to become bilingual, as the presence of two or more idioms in the same country – such as Luxembourg, or that part of Holland where a particular dialect is spoken together with Dutch – or the moving of a monolingual family abroad for a long time. In few cases, the interaction with a nanny speaking one of the two languages used at home has acted for the child as a reinforcement for the acquisition of that specific language.
I mention just one exceptional case which I am referred of by a parent: there is a family who is having strong doubts about continuing to use two languages at home because it is taking too long for their child to start speaking. Considering this as a very interesting case for my research, I repeatedly tried to get in touch with this family without never succeeding in being replied.
By asking the parents if they were immediately sure to grow their trisomic child as a bilingual I wanted to appreciate whether and how much their awareness of the linguistic deficits deriving from the Syndrome had had any initial influence on this process and thus on the perspective of including him in a bilingual family.
Out of eighteen parents, just two of them were originally concerned with this situation: both of them sensed that learning contemporaneously two different languages would have meant a further hindrance for their child's comprehension and communication. The difference between these two families is that, while the first followed the advice of the neuropsychiatrist and her positive attitude towards bilingualism, the second one is still convinced that a child with Down syndrome should necessarily learn first the home country language in order to be able to communicate with the people around him. Thus this is actually the way they decided to follow: their child initially was presented with just the national language – Turkish – while English remained in the background under the form of videos and books. Their explanation is clear and absolutely comprehensible: knowing the great heterogeneity among trisomic individuals, at the child's birth they could not foresee his linguistic capacity and preferred not to run the risk of overloading him with the simultaneous learning of two languages. They were as well conscious that by doing so they were running the same risk not to give him enough opportunities, but the decision they took and the method they followed can make them now consider him as a real bilingual and feel free to enhance his condition by "pulling forward a little" more English now that the boy is nine and a half years old.
With these two exceptions, as well as the father of the two Maori children who is just starting to be doubtful about the decision, the rest of the families answered positively about raising their child as bilinguals right from the start; interestingly, six parents found disagreement around them despite their decision and, apart from one case where the objections came from the husband's family, five of them state that it was their children's speech therapist or paediatrician to be perplexed. It seems clear nonetheless that doctors finally gave up their opposition before the evidence that also children with Down syndrome could slowly become bilingual.
From the exchange I had with the parents, I was positively surprised by the fact that most of time there was not a concrete explanation at the base of their decision to raise their child bilingual, but rather an instinct, a natural boost: without knowing the others' answers, many of them simply replied that they instinctively felt their trisomic child could and should have learnt both languages, though perfectly knowing that this could have been a longer and more difficult process for him first. The clearness and at the same time the simplicity of their replies enrich the confidence in solving such situations by simply and disarmingly thinking that "it was not an option to do otherwise" or that it was obvious that if the child could understand two different languages, he would eventually have been able to speak them as well. The majority of the families then has other typically developing children and in my opinion the positive experience of bilingualism with them has been a further motivation not to consider this experience as impossible for their disabled child.
Following the same instinct they felt that the experts' negative attitude towards bilingualism would have consequently created a division inside the family itself, in that the child who was forcibly grown up monolingual would never have enjoyed completely the dialogue and exchange between his parents and siblings.
Certainly I cannot afford to ignore or even despise the specialists' opinion about this delicate topic – I intentionally asked their point of view – but I have necessarily to notice how sometimes even the knowledge of the multiple aspects of a pathology such as Down syndrome is still not enough to avoid underestimating these children's capabilities, and how the final decision of the parents is extremely relevant especially for those aspects of the child's life that involving his emotions, self-esteem and personal realisation, can afford to stay apart from more strictly clinical or medical competence.
Together with this more affective reason for raising a child as a bilingual which is common to all the collaborating parents ("inclusion starts from the family" states a father), besides a more generic but significant desire not to fix limits for the child before even trying, the perspective of going back to the original country of one parent is another relevant and practical motivation emerging from one questionnaire.
Probably because most of the bilingual situations in these families was originated by the different nationality of the two parents, the most used system to maintain bilingualism with the children has turned out to be "one person/one language", which has started from the very beginning of the child's life, with the exception of one family who declares not believe in the efficacy of starting immediately with the double immersion.
The exceptions to the majority are either the case where the parents are both Italian and their bilingualism is the result of a long permanence in England, so the system is one place /one language, or the situation of a bilingual region in Holland where the child was initially talked to in the home dialect and then in Dutch for learning to read and to write. The other difference from the majority are the cases of the Czech-Slovak family, who apply the one place/one language systems together with one activity/one language, and the situation in New Zealand where either at home or at school Maori is the language heard and spoken by the two brothers, while English the one spoken by the community. The only case where the three methods for maintaining bilingualism are simultaneously used belongs to the girl living in Luxembourg, where she is immersed in a trilingual reality according to the language used at home (Luxemburgish and German) and the one taught at school (French).
The other diverging case is that of a mother who declares not to have a clear cut system and that she speaks both languages to her son according to the situation: when outside she tends to speak the language of the community (English), while at home she uses with the child her original language (French).
It seems then that the commonly used system of separating the two languages according to the mother tongues of the two parents is constantly maintained through the years as the most effective way for keeping constantly in mind the differences between the two idioms and the most useful chance of practising both whenever needed.29 I wanted then to check whether these children's bilingualism was maintained by just natural exposure or if it was enhanced with specific means or methods: actually my intention was to appreciate which kind of activity was most effective and enjoyable in a situation that, though profitable, can be often tiring.
The most commonly used means are audio and video tapes, together with books and games presented in the two languages with a higher frequency for the first two. As far as books are concerned, I would like to focus on two particular suggestions given to me by a mother: the first is actually mentioned principally as a mean for enhancing the mother tongue and secondly for practising bilingualism, that is early reading. According to her opinion, all children with Down syndrome should start reading very early, even at the age of three or four. For the difficulty they have in constructing sentences or in creating syntactical connections, reading helps them fix grammatical structures, not to mention the great amount of new words they would certainly find and learn.
Early reading is definitely one of the most accredited way of teaching words and grammatical structures experimented by parents. Since 1979, in fact, when a father declared to a speech and language therapist for trisomic children his amazement in observing the positive and quick effects from early reading on his three-year-old daughter, many studies have been made to analyse and demonstrate that linguistic performance, speech articulation and richness of vocabulary in these children were strictly connected with early exposure to flash cards representing simple words. The results showed that in some cases the child's ability to read got over his school mates', as well as making him start introducing articles in speech – normally omitted in trisomic children' telegraphic style – passing more quickly from the one-word to the two-words phase, and increasing his semantic awareness of the words for the gradual construction of more complex phrases.
If reading stories to the child in one language or letting him read by himself has turned out to be a reliable way of addressing one of the most serious problem in the linguistic development of trisomic individuals, even more so for bilingual children who more than others have to shape their brain architecture according to two different codes and learn two parallel vocabularies. For example, exploiting the fact that children in general seem never to be tired of hearing the same story over and over again, I guess that reading them the same story first in one language and some other time in the second one necessarily helps fixing in mind at least a great quantity of words in the two codes and deepen their semantic awareness.
Secondly, the same mother advises me about extra lessons in Italian (second language) her daughter has attended for 6 years at home with a Special Education teacher. Lessons are once a week, and what I find most interesting is that this decision is the result of the little attention given to the child by her teacher at school who has to deal with a very numerous class. Certainly I am not going to analyse the details of this fact, but if we take for granted that this child is attending school in Italy, as her mother specifies, we find here a clear example of how the law for inclusion of children with Special Needs – reduction of the pupils' number in classes with a disabled student sanctioned by Legge Quadro 104/92 – is not always applied, and the consequence it has in a family where learning the community language is a duty the parents cannot afford to neglect can sometimes lead to an unexpected expense.
Given its frequent mention in the parents' replies, I would like to anticipate the topic of the next chapter by hinting at the importance of Sign Languages for maintaining and enriching a situation of bilingualism. Having previously appreciated the important contribution this method gives disabled children in improving their communication, I wanted to check if the same could be stated when a foreign language was concerned.
The effectiveness of using signs and gestures to connect words or concepts expressed in the two different language in fact, has been confirmed by almost half of the parents asked during my research. Out of eighteen samples, ten never used signs for this purpose while just one parent clearly declares that the signs she uses at home aim exclusively at teaching the mother tongue, as they are intended as a connection between verbal and non verbal communication, inapplicable when two different verbal codes are concerned.
The other eight of them used or is using a Sign Language to visually show the meaning of a word in the other language spoken at home: American Sign Language, Swedish Sign to Speech, Australasian Sign Language, Signalong, Baby Signs and finally Makaton Sign Language have turned out to work for this purpose. As I will explain later, Makaton is a system with specific vocabularies according to the age of the child and the level of his ability. For this reason learning to completely use it can actually take some time, which seems to worry a mother who, though intentioned to improve her knowledge about it, is also aware that involving her husband and day-care center teachers can be a challenging situation. As for bilingualism, we will see that again the same easiness with which parents use signs is not always shared by experts and speech pathologists: it seems in fact that the efficacy of signs as a "bridge" between two languages, to use the words of Dr. Sue Buckley, is an even more nodal aspect to be taken into consideration.
The final part of the questionnaire is intended to check the reaction of the child to a situation of bilingualism he was or still is experiencing in the family. Clearly it is the most relevant part of this enquiry, and when I prepared the questions I was perfectly aware that they could either confirm or hopefully deny the sceptical attitude some specialists – but not only they – have towards the possibility of learning a second language for children affected by Down syndrome. I wanted to check several aspects concerning the child's response to bilingualism: from the most common characteristic of trisomic children – the delay in starting to speak – which in this case would be seen as a deterrent if added to the longer period of silence in bilingual children, to the risk of being confused, but also to finally highlight the benefits depending on knowing two codes for communication.
In four cases out of eighteen part of my questions were not applicable as the child is still too little to verify the way he or she is using both languages, though for one of these two I have indications regarding comprehension: this 15-month-old girl, exposed to English and Japanese, is in fact able to recognise few spoken words such as "bye bye" and the Japanese grace before meals. The fact that when she hears these words she waves her hands for greeting and put her hands together for grace is the evidence of her comprehension of this particular verbal input.
What has emerged from the research is that the majority of children, as a result of a bilingual education stimulated and enhanced by communication tools, lessons and sometimes the use of signs, has started to speak with the family using both languages: in detail, out of eighteen, eight children have been able to do so, while six of them, with the exception of the three who haven't started to talk yet, has shown to be more confident with one language. Nonetheless in one of these cases bilingualism has balanced itself very quickly with the increasing exposition of the child to the second language spoken in the family.
I would personally not focus on the difference between the children who have been bilingual from the start and those who became so later on because I think both answers are a positive result anyway. To my great satisfaction and as a most incontestable proof against the common myth of the confusion created in the mind of bilingual children, all but two parents who filled in the questionnaire state that this is not the case of their children who have clear in mind the distinction between the two languages. Only one girl seemed to be confused when she had to begin to write in the two codes, but the problem was solved with a temporarily interruption of the switching on behalf of the language she was learning at school. The two cases that show a non completely successful bilingual education are the two Maori brothers, whose uncertainty in separating the two languages affects all the aspects of the language itself.
A curious answer I consider as a variation rather than an exception to the majority is the one of a mother who states that her son does not seem to be confused by the codes, in that he probably does not realises that he is dealing with two separate and different languages. Given the age of this child, three and a half, I would not consider this as a case of failure, nor I am sure do the parents themselves. It has always to be kept in mind that normally children with Down syndrome need more time to enter the world of language, to give a sound to the objects they see around, to express their needs by repeating the words and expressions they hear. The distinction between the two languages thus should be awaited with the same patience used for the other linguistic aspects which appear late by comparison with normal peers. If in that specific case then there is a clear and constant explanation and concrete demonstrations of the difference between the two codes, the gaining of linguistic awareness on the part of the child can be easily reached.
Conversely, as far the delay in starting to speak is concerned, actually most of the families confirmed that this happened for their sons and daughters, though one of them is willing to specify that this is a normal situation for children with Down syndrome even non bilingual. On the other hand a mother confirms that her trisomic child had a delay in speaking, but definitely declares that so had her other three bilingual children.
All these things considered, on the one hand I instinctively understand the family who is deciding to give up bilingualism for their trisomic child because it is taking too long for his speech to come; I can easily comprehend their fear to contribute to the difficulty of their son by trying to make him speak two languages, but on the other hand the results of the research are undeniable: though with sacrifice, though assisting to a delay by comparison to their normal peers, at the moment most of these children are able to communicate and to manage at least the most common situations using two different codes, and the longer time they had needed to reach this level has been worthy of the benefits they are currently experiencing.
Admittedly it would not be honest to state that these children have reached a perfect and balanced bilingualism, either for the young age of most of them, or because there are still some aspects of speech performances which seem to be slightly lacking. As I do not possess any verbal demonstration of these children's competence with the two codes, I presented in the questionnaires five different options of possible deficits in their speech performance, and let the parents choose which was or were the most evident for their child. I intentionally put the fields where children with Down syndrome usually show to have problems, that is pronunciation, syntax, grammar, association between words and objects/concepts and finally comprehension, and asked them subsequently how they solved the problem.
With the exclusion of seven cases where no option has been chosen in that the child seems not to experience any particular problem, in just one family this question is not applicable because the girl is too young. Among the remaining parents one has ticked comprehension as the most lacking aspect of her child's communication, presumably for hearing impairments given the solutions they are adopting to solve this problems, such as repetition, use of Makaton Sign language and speaking slowly. Pronunciation indeed seems to be the most problematic aspect in these children living in bilingual context, but we have already seen how a poor articulation is the consequence of their general facial muscle hypotonia as well as of the interference of a large tongue in a narrow palate configuration. Syntax is just once indicated as a problem especially because most of the children are still in the one-word phase, but at the same time there are four cases where grammar seems to give problems to the child and an equally felt deficit when association between words and concept is concerned.
Though I intentionally avoided to analyse also the written aspect of communication limiting my enquiry about spoken language, a mother who did not choose any of my options, added that the problems her child finds are when writing in English or in Turkish, which she states is a rather "write as you hear" kind of language, differently from English where the sound may change according to the preceding or following letter. The result is that the child at the moment tends to use Turkish phonetics even when writing in English, as presumably a consequence of choosing the easiest system for him.
Reflecting on the answers I got in this specific enquiry, I find that all of them might be normally considered as problems in speech production that a trisomic child can have even if he is not experiencing bilingualism: actually I did not specify if the lacking aspects the parents were signalling were depending on bilingualism or were apart from it, nor did they intentionally declared that these problems were strictly connected with the two different codes their children were hearing and speaking. Probably only the option "association between words and concepts or objects" can be specifically slowed down by exposing the child to the fact that the same object is differently called according to the language, but I repeat that this aspect should belong to the initial phase of bilingualism and that later on when the distinction becomes clear, this should normally turn into the wider chance of communicating and expressing himself typical of a bilingual individual.
For the same reason the methods used by the parents who noticed problems in their children's linguistic performances that I am describing next can thus be considered as either a strategy for enhancing the teaching of a foreign language or also as a possible chance for stimulating the mother tongue: in fact one mother noticed that her son's poor linguistic performances were mainly depending on a relevant hearing loss, which she solved initially by using signs to reinforce the message, and more recently by putting grommets to him. Thanks to this decision the child now is definitely more responsive.
When trying to overcome problems of pronunciation instead, parents have found effective solutions with speech therapy – which is almost normal for these children – otherwise, as mentioned before, signing together with slow pronunciation and repetition on the part of the parents. As far as grammar is concerned, again reading has turned out to be a useful method for settling patterns and for the chance it offers to see how words are written. Strictly connected with the visual aspect of language learning there is another very interesting strategy used by some families but about whose validity there seem to be controversy: the Whole Word method, which I will analyse in the fifth chapter and whose function is based on considering a word on its whole to be memorised without focusing on its phonetic and morphologic components.
As regards the case of the two Maori children, the parents simply try to insist on the use of Maori, reverting to English only when the children get angry or frustrated.
When asked whether their children were experiencing benefits deriving from their bilingual situation, almost the totality of the parents have answered positively; still the two brothers in New Zealand cannot be included as their mother is actually noticing a delay in speech in both of them.
Besides an apparent increased verbal language skill, the most immediate results of a bilingual education are either a noticeable increasing in the child's socialisation or that by speaking two languages the child is able to communicate equally with both parents and is thus more involved in the everyday life together with the siblings (it seems that none of these children with Down syndrome is an only child). On the other hand there have been different but equally very interesting explanations about the benefits experienced by the child and greatly welcomed by parents.
Interestingly, some of them have not hidden that one extra reason for being glad of bilingualism is that their child can have the possibility of being noticed in the community for something he has more by comparison with monolingual typically developing children thus benefiting of the admiration this aspect generally causes among people. In addition, as comprehensibly stated by a mother, this can also serve as a means to gain respect especially in a society where disabled people are too often looked down or even bullied and more generally to gain self-esteem also in a scholastic environment. This last case is reflected by a child who for the specific school program of his country, Turkey, is learning a second language at school immediately from the first Grade (English), and the fact that he is already hearing and speaking it at home gives him a clear advantage in his classroom where his potential is thus recognised. For another parent a benefit which his child will certainly experience thanks to bilingualism is an increased predisposition to learn other foreign languages, being this a positive effect depending on having already in mind the knowledge of one language's structure and composition and on instinctively applying the same concept to any other linguistic code.
There are in fact two cases where the child is attending foreign language lessons at school, and this further adjunction of linguistic input seems not to affect the cognition they already have of the languages spoken at home, nor are they confused by the new linguistic structures. In one case on the contrary, a mother specifies that learning foreign languages at school is helping her daughter to learn grammar better.
Bilingualism gives moreover a double chance for the child to adopt the easiest way to express himself or to verbalise a concept by choosing between the two codes the less difficult words or expressions, and if we consider the frequent problems trisomic children have when trying to articulate long or difficult words and the frustration that may arise consequently, we realise once more how great a benefit can derive from knowing two ways for expressing the same thing. I would personally count this aspect as one of the most relevant among the advantages brought by bilingualism for children with Down syndrome: once the child becomes aware of the two different idioms spoken around him, I think that choosing the easiest way to communicate according to the characteristics of a language is a great step towards that "metacognition" which seems to be so problematic for them. The awareness that a specific word can facilitate their will to communicate because it is shorter or easier to pronounce is a kind of manipulation of the language that implies the knowledge of it as well as a conscious application of a strategy to reach the aim of improving verbal expression.
There are then the less emotional and more "clinical" benefits parents are sure that their children are experiencing: in one case, though the mother states that it is probably too soon to see concrete benefits, she does believe that exposure to two languages will help stimulate more areas of her son's brain and increase synaptic connections, while two mothers are sure that bilingualism has rendered their daughters' mind more elastic.
Finally, to use the words of a mother, with the exposure to two languages her daughter " will have access to a much wider world". The apparent simplicity of this declaration is very soon explained and it is what lies at the background of all the motivations given by these parents who have chosen to involve their trisomic children in bilingualism: by being less constrained by the norms of each language, the child is brought to a greater stimulation of his flexibility and imagination. Not only that, we don't have to forget the essential component of bilingualism, that is the access to two distinct cultures as well, which is felt as even more curious and amazing especially when two completely different cultures are compared, such as the English and the Turkish or Japanese one. By understanding both, the child has access to the typical aspects and expressions of each community, joining their most common traditions peculiarities. As happily stated by a mother, it is an encouragement to always grow, learn and enjoy, also by singing songs in the two different languages and thus – why not – having more fun within the family.
While the responses reported till now are taken and elaborated from the questionnaires I personally sent to parents of children with Down syndrome, there are few other references in the web about this topic, again in the form of opinions and advice given by parents to a father who was uncertain whether to raise his son as a bilingual or not. Interestingly, while exposing their experience about a double linguistic exposure, they agree in stating that literature about this specific theme is rather poor everywhere. For this reason a short thread has started with the request of this father, either on the part of parents or on that of some experts.
I have to use the past for these cases as the exchange between them goes up to the 1997, and that's why it has been impossible for me to get in touch with them now that most of them have no longer the same e-mail address.
I could generally state that the vision of the parents is similar to that of the families asked by me, with a constant reference to the need of behaving naturally in the family when the child is exposed to two different languages and a preference for keeping them separate according to the mother tongue of the parents, that is again the system "one person/one language". Even here, for more than one family who took part in this dialogue there has been extra languages learned either for the specific place where they lived or in one case for a particular workshop attended by the child where a third language was used. This is the experience of a trisomic girl who was attending a course based upon a multilinguistic approach were she was learning Spanish, Portuguese and English: the results obtained according to her father were amazing. Only in one case a mother was growing her child bilingual – English and Mandarin – with a slight fear because of the awareness that starting to talk in two languages had taken longer for her other children by comparison with the monolingual friends. She knew that for her trisomic boy the first words would have been even slower to come, but the use of signs as a support and the consciousness that if her other children had succeeded the same would have been for the disabled one, was giving her anyway the confidence to go on exposing him to a bilingual context.
Is it that bilingualism affects cognitive development or conversely, that cognitive development affects bilingualism?30
I am perfectly aware that in order to answer this question a further enquiry should be done with the parents first and then in case studies with the children themselves. Though interesting and relevant the results would definitely be, especially by exploring which specific cognitive areas bilingualism influences most, the aim of my research was not this one; before even defining the details of possible benefits deriving from bilingualism in general, I have focused my attention on a more delicate field in that the cognitive development of the individuals concerned is affected by Down syndrome. My precise intention was to go back at the origin of the controversy between a sceptical and a more positive attitude towards the combination trisomic children/bilingualism, which in case of positive evidence's majority, would have function as a support for confirming the possibility and the importance of learning a foreign language at school. Once that the perspective of learning two linguistic codes for these children is confirmed or denied in fact, the following step of analysing the details can be taken.
In few cases a concrete proof for the successfulness of a bilingual experience cannot be given yet, the process has just started and nothing can be done by the parents if not keeping on exposing their child to the different languages. In some others the child seems to be more confident with one language while able anyway to understand and pronounce short sentences in the other. There is also a couple who is giving up the attempt to grow their child bilingual as their worry about delaying his speech for the quantity and diversity of the linguistic input has finally prevailed.
Again, the great heterogeneity among normal children as well as among children with Down syndrome is the main explanation of the different levels gained in linguistic performance and specifically in bilingual communication. With this in mind accepting and understanding even negative effects deriving from bilingualism – which I honestly could not deny a priori – would become easier. In none of the eighteen cases analysed anyway I had to take this chance into consideration.
I see a majority of families who talk about their trisomic child as perfectly able to speak two different – sometimes very different – languages; they certainly often need the intervention of speech pathologists, or the use of signs and gestures to facilitate comprehension, with the result that still specific areas of their communication are lacking. But the prevailing responses are positive and in a number of areas the child is benefiting from his being bilingual: socialisation, inclusion in the family life, interaction at school and in the community, self-esteem and recognition of the potential among peers and adults, and finally a more flexibility in thoughts and a major disposition to learn foreign language at school. Especially for those cases where the individuals with Down syndrome are older than the average in the analysis, the success of their bilingualism is undeniable in that the last threshold level has been reached and surpassed, the distinction between the two languages is definitely clear and the supporting methods used in the past can now be abandoned.
The spontaneity and confidence with which these parents have described their children's path towards bilingualism is the most significant starting point to find specific and effective methods for teaching them a foreign language even outside a bilingual context where the time of exposure and the kind of linguistic input would certainly differ.
This is to demonstrate that consequently to my research I now take for granted that children with Down syndrome can learn one or even more that one foreign language. Though not aiming at – and probably not having the means to – answering the question about which direction has the influence of bilingualism on cognitive development, I can at least state that in the specific case of children affected by Down syndrome the deficits in their cognitive development have not prevented them from becoming bilinguals.CHAPTER 3
As seen in the first chapter, one of the most evident deficit depending on the Syndrome is hearing impairment. The cause is basically physical, as a narrow eardrum and frequent mucus sedimentations prevent the individual with Down syndrome to properly hear a sound. Their poor short-term memory then does not allow the input to be kept in mind for enough time to be successfully processed.
The consequence affecting linguistic comprehension and production is clear: an input based solely on verbal code is too often bound not to be entirely perceived and decoded, and for this reason an alternative strategy has turned out to be necessary.
So far the most accredited and effective one is the use of gestures and signs together with the spoken words. This method on the one hand exploits a general and natural disposition of children towards signing before a real communicative ability is reached and established, and on the other one gives a visual translation of speech, that can be more easily retained in mind thanks also to a less affected visuo-spatial memory in trisomic children.
Interestingly, the sign system used with hearing-impaired children and more generally in the field of learning disabilities has indeed much less to do with the Sign Language for deaf people than the name would instinctively suggest. The difference lies in that this last communication system is a language in itself and substitutes the spoken words. The sign systems analysed in this chapter on the contrary are not used instead of the oral input, but as a support to it: while the sign is produced, the corresponding word is always – or at least ought to be – pronounced in order to either practise the child's auditory skills or to stimulate its repetition.
The difference between the two kinds of method is nonetheless at the base of a noticeable misunderstanding among several families and experts who presumably associating signs to deaf communities do not see any utility in applying the language for deaf to their children whose hearing is admittedly defective, but not completely absent. Sometimes reactions to the possibility of using signs with trisomic children – intended as just a support for communication – is even annoyed especially on the part of some parents, as if the adjunctive deficit of being deaf was to be attributed to their children.
Conversely, parents who used or are using signs to teach their children the mother tongue never miss to highlight its relevance and effectiveness. While a small minority does not adopt the signs matched from a specific system, but rather the most natural and easily comprehensible gestures they spontaneously chance to use in everyday situations, the majority of families I contacted for my research decided deliberately to learn a precise sign system, attending a course or apprehending it through books or web sites.
The assumption I begun to have about the same validity signs used the mother tongue could also have for teaching a foreign language found a clear confirmation by some of the families I had previously questioned about bilingualism. Though almost never mentioned in published information about sign systems, in fact, their applicability to foreign/second languages is a real fact experienced by several parents.
For this reason I wanted to ask some of the most known doctors for Speech and Language Therapy – most of them are the same who expressed their view about bilingualism – about their opinion on using signs to connect words from one language to another. If the aim of my research is in fact to find a specific and successful method for teaching a foreign/second language to trisomic children, the use of signs adopted for the mother tongue was in my opinion a good starting point for proposing the same method to act as a passage, a bridge between two different linguistic codes. The possibility of "showing" the meaning of a foreign word or concept through a sign is probably the easiest way for a hearing impaired child to enter a new world and its linguistic code.
Only in one web site did I find a brief reference on the applicability of the sign system described to the teaching of foreign languages,31 otherwise generally no mentions are made about this important and exploitable function of signing.
The experts' responses will be shown in the next chapter after the description of the most commonly adopted sign systems among families with trisomic children.
Makaton is a vocabulary of signed words and concepts to support and stimulate the oral communication. It was originally invented after a strong need to offer a basic means of communication for deaf mentally handicapped residents of the many hospitals in Surrey, who were too often isolated from the surrounding hearing community either of patients or sanity operators. A first attempt to introduce signs was thus tried in the late 1960s and the residents appeared to respond eagerly.
When the confidence about the effectiveness of signing begun to settle, a research started at the Botleys Park Hospital with a group of deaf mentally handicapped patients to evaluate the use of the British Sign Language (BSL), the official language for deaf people which was the richest – but maybe also the unique – source for signs. If the concept of solving the problem of auditory input for non hearing patients exploiting the visual channel was the same at the base of BSL, the idea of teaching this Sign Language in a structured manner and isolating a selected vocabulary according to the specific needs of the patients was however unique. This is what the research and the work of three specialists would have carried to: Margaret Walker, Senior Speech Therapist at Botleys Park Hospital, Surrey, Kathy Johnston and Tony Cornforth, Psychiatric Hospital Visitors from the Royal Association in aid of the Deaf and Dumb.32
The results of the research were various and each one quite encouraging for the very reason that its positive effect did not involve just communication in itself. Besides confirming that the deaf mentally handicapped patients learnt the signs very quickly and easily, the research showed an immediate and noticeable improvement in attention through eye contact and lip reading on the part of the patients who were also more sociable either towards the assistants or above all among themselves, whereas frustration and difficult behaviour were previously the main characteristics. Not only that, by spontaneously trying to imitate speech, the deaf patients became more vocal, and together with the benefit of removing the pressure to talk, signing had the additional benefit of practising arms and hands movement.
The success of the Makaton Vocabulary was confirmed when it was given a trial at school with mentally handicapped and autistic children who were not deaf: only, the vocabulary had to be updated according to the context where it was used, no more a hospital but a community of disabled students. In 1976 the Revised Makaton Vocabulary was completed for this function and is still in use currently.33
Even though it has its origin in the BSL, nowadays what makes Makaton probably the most used sign system to support communication are some precise characteristics that basically differentiate the two codes:
Unfortunately, while Sign Languages for deaf people are diffused all over the world where deaf communities are present with obvious differences according to the nations, there are still some countries, Italy among them, where Makaton Vocabulary has not been adapted. At any rates, it appears to be largely diffuse across cultures and only few cultural changes reflecting differences in customs, diet, climate and religion usually need to be made. In these cases the signs that have to be introduced for a specific concept not included in the Makaton official Vocabulary are matched from the country's own Sign Language.
Makaton sign system provides a Core vocabulary first of all: it is a small vocabulary of concept/items reflecting essential needs and experiences and is taught to start immediately a functional communication with the disabled child. This is another feature that makes Makaton different from BSL, whose knowledge has to be precise and takes long to be achieved, whereas in the first case with few essential signs interaction can already take place avoiding on the one hand communicative breakdowns and on the other one allows right from the start to test the efficacy of this particular method of expression.
The eight stages are the result of the observation during early research that concepts seemed to cluster naturally into groups around functional activities and related topics.35 They form a corpus that functions as a constant reference for either disabled users or for hospital and school staff members and in general for those who moves among institutes where the system is applied. As well as a practical division of the concepts and signs, the stages reflect the language development in the mentally disabled people which follows the same steps – but not at the same time – of normally developing children.36 The reasons for these delays have already been analysed in the first chapter, but it is important to say however that Makaton signs are structured in this way in order to provide the child with at least a communication medium proportioned to his understanding and ability. That's why it is essential to adhere to the stages of the Vocabulary, asking for the advise of tutors if modifications or adjuncts are needed.
While the Core Vocabulary is taught to all interactive partners and can be personalised for each student eliminating the superfluous items, inevitably some extra concepts might be needed in specific situations which are not provided by the Core Vocabulary: for this reason any adjunction required by parents or teachers are included in the open stage 9, which is called Resource Vocabulary.
As shown below, the stages permit a gradual expansion of the child/adult experience from the basic needs: the first stage for example includes the familiar roles, the simplest food items and very common verbs to be used everyday. Individual items are initially adopted as single concepts for short exchanges, and then gradually combined into brief sentences: each stage in fact contains concepts also for the interacting adult's use, especially for regulating the child expression or activity such as " look, come, go, listen, what?, where?…".37 Working through the stages allows the teacher not to overload the learner by reducing the amount of items to only those really needed and important for the communication with the child, who is at the same time encouraged to fix a small vocabulary through repetition.
Leaving apart the division into stages, admittedly the level of the handicap should always be kept in mind when the comprehensibility of the sign is concerned. The sign should always be understandable for its iconicity, that is the association between the form of a sign and what it represents. As in all sign languages or sign systems such as Makaton, the basis of iconic association may vary: there may be action-based or visually-based or also concept-based signs/symbols, and clearly the ability of making the right association makes the sign's iconicity more perceivable and comprehensible.
Specifically, there are two criteria of iconicity which I feel are worthy to be mentioned, in that they highlight a very slight difference in concept which influences so much the clearness of a sign. The first dimension of iconicity is called transparency, and it refers to how guessable is a sign for a new user, while the second one is translucency, that is how closely related are the sign and its meaning judge to be.38 If apparently the two terms seem synonymous in that signs which are easily guessed are normally also thought to be closely related to the meaning, we realise that we cannot take for granted this assumption especially for signs like TREE in Makaton Vocabulary, which is very translucent (the forearm reflects the trunk, and the waving hand represents the leaves), but it is really not very guessable, resembling this sign rather a waving hand for "hello".
If required, symbols are adopted as well according to the philosophy of the Total Communication, that promotes the use and integration of all the communication modes when dealing with a disabled person. Symbols, which are of course complementary to the words and not alternative, get their repertoire from another known symbol system for handicapped people, the Blissymbols which I will describe later on. In order to be easily comprehensible, symbols have to follow specific criteria: first, they are required to be as pictographic as possible so that they can convey the meaning of the concept or word represented; secondly, they should be uncomplicated to be drawn and used in a functional manner similar to writing, and finally they ought to reflect language themes to support and stimulate language structure on the part of the user.39
As well as for the signs, there are three different levels of representation also for the symbols: the most basic level is to use a sign/symbol for the whole sentence.
The next level provides the use of signs/symbols for the key-words, so that the whole meaning is represented without the grammatical items:
The final level is the most complicated one in that every word and linguistic element in the sentence is associated with a sign/symbol:
Signs and symbols can be easily personalised especially when proper names are concerned: while for signing a name it is possible to finger-spell it letter after letter, when symbols are referring to members of the family, for example, it is enough to put the initial letter close to the symbol, normally in a box on its right:
When a profession has to be specified, on the right side of the image indicating a man or a woman a small identifying symbol of that profession is placed. So for example:
It is possible to learn Makaton by attending a course or a workshop, where practitioners get constant feedback by interacting with the tutors and with the other participants. Alternatively, families can buy a Makaton Parent Carer Pack to learn the system if they don't have the time or the possibility to attend the courses. As we will see later on with the answers to the questionnaires of the parents, some of them learnt Makaton in the Web as well, but as far as my knowledge of web sites about this system is concerned, I would personally prefer to join the most complete source of the Vocabulary in the courses or workshops.
Considering that Makaton is intended as a communication support through signs taken from the Sign Language for deaf people, it is easily guessable that the range of disabled people who can benefit from its use is quite wide and heterogeneous. We can assume in fact that this kind of communication system is applicable every time a physical problem is affecting speech processing and production, and consequently another complementary channel is preferred or necessarily required rather than the oral and the auditory one. For this reason signing can be normally applied to:
Evidently, though not declared above, Down syndrome is consequently an extra pathology that can be included, for either articulation problems or especially for the reduced auditory reception, and thus for the learning difficulties experienced from the very beginning of trisomic individuals' lives either at home or at school. Not only that, keeping in mind these children's poor short-term memory skills, we understand how the possibility of seeing a word or a concept helps greatly to recall its meaning. This important aspect connected to the use of signs will be analysed in the next paragraph .
I am convinced that such a clever method is not entirely exploited in all the nations, though Makaton Vocabulary has been adapted in forty countries. It is now widely used throughout the whole of the United Kingdom in schools, training and education centres, hospitals, residential homes and in the families of children with learning difficulties. It is in fact used for all children enrolled in Early Intervention Programs promoted by Special Education Centres and is introduced to children as young as 7-8 months, with the expectation that peers will gradually interact and communicate with each other and also with the teachers in the programs. Signs are practised at every opportunity, especially through fingerplays and songs, either in formal or in informal manner.41 Makaton Resource Centres have been established also in the USA, New Zealand, Hong Kong, Spain, and in local settings in Japan, Malaysia, Pakistan, Sri Lanka, Belgium and Norway. Certainly the chance of implementing the use of Makaton in the nations where it is absent necessarily depends on the kind of environment and resources: centres in fact require a teacher, or speech therapists or workshop managers who should accept to start this teaching and who should also be able on their turn to sign well, to have a complete knowledge of the Makaton system through the attendance of courses or workshops.
Though aware of the expenses such an activity would certainly cause, the reality of Down syndrome and disability in general is present all over the world and in my opinion serious attempts to establish Makaton centres where it's still absent should be made, trying thus to overcome scepticism or simply different habits for addressing speech and language deficits.
The importance and efficacy of signing has been proved by several studies42: for the specific case of Makaton Vocabulary, we have already seen how the division in two vocabularies and the structure in eight stages renders it even more accredited and easy to follow and employ, and equally more adherent with the natural steps of linguistic development.
Thus, the efficacy of this system and of those adopting the same principles lies clearly in the mode of transmission, that is in the preference for the visual channel by comparison with the auditory one. The auditory trace in fact is momentary, hard to process for hearing impaired individuals and difficult as well to recall and imitate; the way it is transmitted is complex to shape, for its dynamic cannot be held. A sign is also a temporary expression, but can be held static in order to be imitated; besides this, hands, facial expression, body movement can be more easily shaped into signs than sounds can be shaped into comprehensible words.43 We don't have to forget the importance of imitation especially for children with Down syndrome, who need this particular method for long before their skills become independent and their expression becomes the result of personal initiative.
Moreover, the child who signs has the possibility of seeing and feeling himself making the sign, and this constant feedback is extremely relevant for memory.
According to the study of Saltz and Donnenwerth-Nolan (1981),44 enacting the meaning of a sentence and mentally visualising it, helps recall the sentence itself. This was the result of a perceptual-motor trace in memory caused by motor enactment: action in fact is a relevant trigger for memory (in processes concerning movements it is far simpler to physically try to perform them than having the passages explained verbally). This so called enactive memory is presumably the earliest form of representation for young children, for whom action and perception are intimately linked, in that they still don't have a developed rehearsal strategy for repeating the sounds or an "inner language" through which they can symbolise experience for themselves. As a confirmation of this theory, during the same research it seemed that the trace was even more easily kept in mind when signs involving touch were to be performed.
Thus on the contrary signs representing abstract concepts should be avoided as much as possible for the difficulty they would have in being connected to the meaning through either transparency or translucency. In order to maintain a sign system effective in fact, the principle that iconicity is the turning point which makes the difference with spoken language – where it is not available to the same extent – should never be neglected.45 Admittedly other factors such as functionality of the signs in daily life, the motivation for their use and their reinforcement in the environment where they are applied have a great importance for their retention.
In the specific case of children with Down syndrome, as I will soon examine through the responses of fourteen families, considering the range of deficits affecting speech and language production – auditory perception, short-term memory, rehearsal and articulation – the use of sign systems, especially Makaton, has shown that this population learns manual signs more quickly than words especially at the early stage of development.46
A clear evidence was found when, compared to a control group, young children with Down syndrome were less successful on tasks requiring a series of movements to be performed in response to verbal instruction, but outperformed controls when provided with a visual demonstration.
Not only that, the utility and large adhesion to signs is also attributed to its natural aspect and the spontaneity with which they are taken up by children, who are well-known to use gestures from their very first years especially in the development of imperatives and declaratives, together with eye contact as a means to assure joint attention.
As regards the time required for signs to be learnt, several studies have shown that sign languages' syntax is optimally acquired before the age of eight, whereas vocabulary, though starting however immediately with the exposure of the child to signing, can in some cases continue well beyond adolescence. Even if admittedly sign systems such as Makaton are not considered as real languages in themselves, it seems to me that the principle for starting their acquisition is the same for foreign languages, that is the sooner the best.
If Makaton is the main sign system used among children with Down syndrome and, interestingly, with also some specialists and teachers as well as parents, there are nonetheless other known systems mentioned and used by these families. I will describe each of them followed by the experts' opinions.
Signalong is probably the most mentioned sign support language after Makaton as far as my research has found. Its aim and origin are exactly the same of Makaton, thus also in this case signs are taken– some unaltered – from the British Sign Language to support communication in individuals with language disorders.
Though the first publication of its Phase 1 appeared just in 1992, the idea of an adaptation from the official Sign Language for deaf begun to be concretely shaped in 1969 when a book of mime in photographs was published by Lisl Levett, Speech and language Therapist at Meldreth Manor School. The aim of this precious book was to use visual communication to support spoken English in a school for children with cerebral palsy and severe learning difficulties. Even if it was not largely used, Dr. Thelma Grove, a Speech and Language therapist herself, found it useful for her work with autistic children. From this moment on the concept of visual communication started to develop, with an increase in 1976 with the incorporation in the vocabulary of some other necessary words for children. At that time Makaton sign system was proving to be very successful in the field of learning difficulties and mental disability, but nonetheless during the 1980s many practitioners felt the need of a more flexible approach than the one offered by Makaton. The constant work by Dr. Pat le Prevost and colleagues in Oxfordshire led in 1990 to a vocabulary of 150 signs, called "See & Say". The definite detachment from Makaton approach was when Dr. Gill Kennard and Dr. Thelma Grove, the main Speech and Language Therapists and teachers of the new signs, found obstacles in obtaining signs from the Makaton repertoire in order to apply them to their new language programmes. The publication in 1992 of Signalong Phase 1 has allowed experts to use it all through Britain so far.47
While matching the signs from BSL, the most iconic was chosen where there was a choice and by adapting new signs where the ones offered by the language of the deaf were too complicated or could originate ambiguity. It had to be stressed also that, unlike Makaton where many adaptations have been made for several countries, Signalong is intended to support communication in environments where English is the main language. It seems in fact that at the moment there are no "translations" for non-speaking English places.
As far as the methodology of signing is concerned, the common point of most sign systems is the flexibility in the rules of signing; as well as Makaton, also in Signalong it does not matter which hand is used, there is no difference between the right and the left hand, provided that once the user starts signing with one hand, he remains consistent with that choice to avoid confusion in the interlocutor who is already concentrating on the meaning of the signs. A recommendation is given in the guides for Signalong users to always try to sign within an imaginary frame from roughly the waist to the top of the head, and across the width of the shoulders. This allows the watcher to exploit as well the use of the other essential element of sign languages, facial expression, body language, eyebrows movement, tone of voice.48 It has to be kept in mind in fact that Signalong, as well as Makaton, is a support for communication and not a language in itself, thus the words and the grammar it represents, though very simplified, must be constantly pronounced.
Finally, not even representation and correctness of the signs on the part of the disabled person should be surrounded by stress or severity: what really matters is that that person succeeds in realising a functional communication and possibly a satisfying exchange with the interlocutors without any breakdown, even though the signs are not perfect.
As a clear evidence of the heterogeneity in the parents' responses, there are surprisingly some of them who do use a language for deaf people though their children are only hearing impaired. While a number of families don't even conceive the use of sign systems to support communication with their Down syndrome children, basing in my opinion their refusal on an instinctive reaction to the idea of equalling their children to deaf people, there are some others for whom exploiting the visual nature of sign languages – especially those for deaf – to help their children communicate is neither a problem at all nor an allusion to a condition of deafness.
As well as ASL, I would like to briefly describe another sign system which has quite much in common with ASL and is often mentioned as a support for hearing impaired individuals. None of the parents questioned in my research actually adopts it, but I believe it can be interesting to appreciate its modality of use.
If the majority of the families uses Makaton with their trisomic children, two of them use American Sign Language, which is a language in itself and thus not necessarily accompanied by speech in its use with deaf individuals, with its own syntax and grammar, to such a point that people who are able to sign it and speak a language as well are considered bilinguals in every respect. It is very graphic and essential in signing the words that best promote concept understanding: it is mostly used in fact where the focus is on the message and its sense rather that in the structure of a sentence. For example, as explained in a web site comparing ASL to other systems, ASL would be perfect in a lesson with deaf children where the content of a subject – let's say science – was to be explained, while if conversely the same class had to be taught reading, another different system would consequently be needed.49 In this case there is a specific sign system, Signed English, which translates into signs each separate word, conjunction, preposition in a sentence. Its utility lies principally in that hearing impaired people have often difficulties in writing prepositions, articles and even prefixes and suffixes, simply because either they are not able to catch them in a sentence or because in sign languages such as ASL they are not present: Signed English, whose basic signs are the same of ASL, is thus the more effective alternative. It is the visual representation of English though it cannot be considered its exact translation: with the combination of signs drawn by ASL and the finger-spelling for prefixes, endings and tenses, the child has the opportunity to expand his vocabulary and have clear in mind all the components of a sentence or even of a word.
Nonetheless criticism has been raised towards Signed English, primary because its use is limited to people who are immersed in an English-speaking community and above all because the system of signing all the words according to the spoken language structure can render the signing itself less "colourful"50 and sometimes even tiring. The word-for-word translation in fact, along with the signs and the finger-spelling can either be demanding for the user or distracting for the watcher. ASL is widely used in the deaf communities of the States and English-speaking parts of Canada; it can be learnt and practised in courses held by deaf people, who are obviously considered the beast teachers for this purpose.
It is the result of the combination of Australian Sign Language (Auslan) and the New Zealand Sign Language, and as all the Sign Languages used among deaf communities it is considered a language in its own right.
AUSLAN, the native sign language of the Australian Deaf Community is related to British Sign Language thanks to the migrations and settlements from England. With its own grammar and lexicon, it seems to be a rather sophisticated and complex language in that its representations are not purely gestural: though some signs are iconic and based on natural gesture, most signs are arbitrary, that is they don't have any link with the referent.
Its distinction from spoken English, besides that signs are related to concepts and not words, relies also in that signs order is not the same of word order: while in fact the usual English pattern is Subject-Verb-Object, Australian Sign Language has an Object-Subject-Verb structure. The signs themselves are completed by the combination of hand shapes, position, palm orientation, speed and direction, facial expression and body language.51 On the other hand if needed Auslan expresses words from spoken English through finger spelling. Moreover, it offers functional and easy-to-form signs to Makaton when these are not included in the Vocabulary.
Auslan can be learnt from a native users in weekend workshops or courses that provides four accredited and recognised certificates according to the levels of knowledge.
NEW ZEALAND SIGN LANGUAGE has the same origin of Auslan, and consequently the same connection to the British Sign Language. Its history is marked by a negative attitude in that the use of signs was seen as an inferior form of communication for deaf people who were rather expected to employ their attention and attempts to master the oral system. When the need of a precise and real language based on signs was accepted, in 1991-92 a work to build up a vocabulary was started in collaboration with the Victoria University, until it was finally published in 1998.52
Though for a couple of cases, Australasian Sign Language is another method used by the parents who filled in the questionnaire.
The following descriptions regard either signs or also symbols systems: all of them are frequently mentioned when the topic of speech and language stimulation is concerned for children with Down syndrome. Their use and effectiveness are confirmed by several families whose experience I read in the Internet; and even if none of the family questioned by me actually use them, I think that their mention in this research is relevant in order to have a more complete vision of the variety of methods used to implement communication for trisomic children. The aim of these other systems is clearly the same, but interestingly some of them differ for a stricter method of representation and a more rigid pattern in categorising their repertoires.
PGSS's structure is quite simple and clear: its signs are topic-based and their meaning changes by adding identifying features to the basic signs. Its vocabulary is the result of different combinations on the base of 21 standard hand postures and 37 basic signs, and, as well as Signed English, it reflects the normal patterns of spoken language, thus performing a sign for each word in a sentence.
Its origin goes back to 1930 and is indeed quite interesting: in that year Sir Richard Paget published a booked titled Human Speech where, after studying the existing sign languages, he assumed that the mouth gestures of speech originally derived from pantomimic hand gestures, attributing thus the origin of speech to sign language. When specifically requested four years later, Sir Richard Paget agreed to try and find a systematic sign language where each word would have its own sign following the same sequence of the spoken language. By his constant analysis of the current sign languages, he selected signs that seemed to be sufficiently pantomimic and came to the conclusion that each group of ideas with the same semantic field – time, place, food, religion, etc. – should have a basic sign for itself. By adding an identifying gesture then, the precise word could be differentiated, performed and remembered. At the death of Sir Richard Paget his wife continued the research with the collaboration of Dr. Pierre Gorman of Corpus Christi College in Cambridge: they revised the repertoire of signs made by the inventor, omitting some on behalf of other new ones and establishing the instructions for performing the signs clearly and consistently in order to give uniformity to the practice.53
Initially the system was used almost uniquely for deaf people, but currently its major use is in the field of speech and language disorders, either for children or for their parents, teachers, speech therapists and care staff. The users have at their disposal a vocabulary of over 4,000 signs, and considering the great variety of affixes, the system gives access to nearly 56,000 words to be performed.
The premises for symbol systems in general and for those using pictographs such as Compic is that they cannot deal with the details of a sentence, and neither represent each word or specify an affix or a conjunction. Being the most visual methods for performing language, pictographs though used with many different examples, aim at conveying images, concepts, ideas and events rather than structured words or grammar patterns.
Always keeping in mind the importance of the total or at least combined communication, Compic pictographs can be used with speech as well, exploiting thus the visual together with the auditory approach according to the disposition of the child and his specific deficit. Not only that, the combination of the drawing with a written word certainly renders the concept easier to be remembered by the child.
For the iconicity that characterises Compic pictographs, their applications are numerous and include for example class rules, school signs, physical education activities, instructions for any area as well as for daily classroom activities. Its vocabulary in fact is topic-based and ranges from animals to body parts, clothes, accessories, people and professions but also sexuality, time and weather, transport and places; that is why they can be constantly applied to explaining routines during lessons, assisting the child to understand what he is doing or what comes next, but also in games, to describe the rules or by becoming a game itself – asking questions or making comments about the image in the pictograph chosen by the child.54 Songs and stories then are quite effectively explained by using pictographs for the key words or passages, or by just making the child follow the sequence of a song represented by the order of the cards.
For this reason it can be introduced only when the child shows some ability to understand more abstract stimuli, normally from two years on, when he gradually becomes able to cope with communication boards, lotto games and visual timetables.
Compic is a valid communication resource created and developed in Australia; though offering the chance of reading the word or hear it pronounced, its methodology relies on the strong visual cue given by clear and easily understood drawings that convey information. It seems that most young children with Down syndrome cope well with a combination of Makaton signing and Compic. Interestingly, it is often the innovative use made by parents, teachers or speech therapists that increases the range of its applications and the diffusion of its benefits' awareness.
I briefly describe this particular symbol system exclusively to show the origin of the already mentioned Makaton symbols: as far as its characteristics are concerned in fact, I personally find it the most abstract system among those used for hearing or speaking impaired children. It is formed of few basic shapes to represent 2,500 vocabulary items, where some symbols are intentionally highly abstract in order to maintain the essence of logic.55 As it can be seen in the examples I am giving of Blissymbols, I don't think their repertoire and the way they are formed is a proper strategy for children with Down syndrome: the shapes are indeed simple, the system is generative in that starting from basic shapes it has the chance of forming new compound images according to the need, but the high level of abstraction and the number of symbols needed even to form a single word render the system more appropriate for a higher level of intellectual abilities. It seems moreover that there are no specific rules for creating new symbols: once the meaning of the basic shapes is known, the formation and then the comprehension of a new symbol depends on the capability of the receiver to catch the sense and interpret the succession of the shapes.
Blissymbols, originally developed by Charles K. Bliss in 1971, are nonetheless used in over 33 countries and its success with non speaking individuals lies in a wide vocabulary, a grammar which allows for sentences in the past, present and future tenses as well as for possessives, plurality and questions. They are certainly more demanding from the cognitive point of view, but less visually complex than other systems,56 and the comprehension of new symbols can be achieved through the analysis of the components:
While for the topic of bilingualism in children with Down syndrome, still with some perplexity about its worthiness, the general opinion by the specialists I consulted was positive or at least their attitude was sufficiently open to at least conceive this reality, when asked about their personal view about teaching a foreign/second language with the support of signs the reactions have been sometimes sceptical and in few cases completely negative. So similar were the replies to justify the disagreement and so in common with that of several families, that I have come to the conclusion that most probably at the base of their refusal there is simply a misunderstanding about the particular systems I was referring to. I am sure that while asking for their opinion I have mentioned to them Makaton as an example in order to show that on my turn I had clear in mind the distinction between Sign Languages for deaf people and sign support systems used together with speech to increase, facilitate and stimulate speech and communication in hearing impaired individuals as trisomic children. Still, in a couple of cases I could guess that sign systems were intended as a language in itself whose application was exclusively to deaf individuals.
The two options I can think of are that either I haven't been sufficiently able to specify that I was not referring to trisomic children as completely deaf and thus in need of a constant visual translation of speech, or that quite diffusely the idea of combining two or even more codes in communication to exploit at the top all the reception channels of these children is hard to be accepted.
Anyway, though I do not afford to deny the contrary opinions which I conversely consider very precious, the general impression that experts in Down syndrome could misunderstand or even ignore the signing methods specifically intended and currently used in many families left me slightly perplexed.
My question was rather specific, as I wanted to appreciate their view about signing for teaching a foreign/second language: I count anyway among the responses two experts' opinions about just the validity of signing in itself, apart from its possible application to a foreign language.
Out of six contacts with specialists, the two belonging to a discussion forum about verbal apraxia57 have expressed a positive view on signing in general. Two of the four that I personally contacted have agreed additionally with the possibility of using the same methodologies applied by parents for the mother tongue to teach children with Down syndrome a foreign language. The first is Dr. John Miller, Department of Communicative Disorders, University of Wisconsin in Madison: he mentions signs and graphic symbols as useful systems to be used effectively in situations different from teaching the mother tongue, considering the prolonged period of unintelligible speech as a frequent characteristic in these children. His reply is very brief, but he appears to be quite open to the use of signs especially if families who have experienced it declare its effectiveness; it seems though that he has never experimented the same with his patients.
This is roughly the same situation for Dr. Terje Bielland from Norway who assumes the possibility of using the same strategy for either the enhancement of the mother tongue or for the teaching of a foreign language. As far as Makaton is specifically concerned, he declares to have merely read about it in a book and in the Internet and admits that this method is completely unknown to his colleagues: nonetheless their experience has proved to be successful with sign systems of different kind, which allows them to completely agree with this specific application of signing with hearing impaired children. Interestingly, Dr. Bielland hints at a method which I have briefly mentioned in the second chapter: the Whole Word Method, curiously quite similar to the concept at the base of sign systems in that the word is presented as a picture that the child can see as long as he needs, and only when he is able to recognise a number of whole words, is he taught to analyse their components, syllables and letters.
The two other responses that I got openly disagree with the use of signs and symbols for teaching a foreign language: the first one is a very short reply and belong to the opinion "signs-are-only-for-deaf". I suspect to have been misunderstood in my question, as the answer of this Doctor, Nicola Cuomo, Dipartimento di Scienze dell'Educazione in Bologna, who has dealt with nine hundreds cases of trisomic children, is that he never felt the need of using signs when hearing and speech were not affected by a serious pathology. He does not make any mention to the specificity of signs for a foreign language in that his opinion is clear even for the mother tongue: signs in fact, in his opinion, are better used with non hearing individuals.
The articulated response by Dr. Miquel Siguan from Barcelona though presumably intending again the sign systems as Sign Language for deaf people, gives a hint on the validity of gestures and simple signs in the mother tongue especially when the child is very young, in that this is notoriously a habit of all children to indicate, order and express their needs. Additionally, the lower the child's intellectual level is, the more useful and possibly effective signs and gestures will be, though he has some doubts concerning the level of abstraction which is typical of signs and symbols for children who conversely need clarity and coherence with the reality surrounding them.
For no reason instead in his opinion should signs for deaf people be used with trisomic children with the purpose of teaching them a foreign language: signs in this case form a code in itself and thus they cannot function as a bridge between the mother tongue and a foreign language. A child with Down syndrome living in France for example – Dr. Siguan states – can admittedly learn the French Sign Language for deaf, but it's not possible to think that the same child is exposed to the Italian Sign language to learn Italian, because he will be induced to apply this last sign language to his mother tongue, with which it has nothing to do.
Clearly this is not what I intended when asking his opinion about signing and foreign languages, but unfortunately, when I went back to him to explain the topic I was dealing with and to mention the specific sign systems I'd like to propose as an aid for this kind of learning, I never had his answer back.
I would like to finally mention the work of Dr. Birkett of the Department of English Language in Glasgow who in a paragraph of her thesis confirms the positive effects of the use of Makaton with children affected by Down syndrome, pointing out that their better motor ability respect their language skills, and their rapid facility for imitation make them particularly inclined to learn and use signs to communicate.58
In conclusion, my enquiry among professionals about the use of signs for teaching trisomic children a foreign/second language has had in my opinion two main results apparently in contrast with each other but very significant all the same. For those who know sign systems the attitude has been positive or at least disposed to trust the encouraging results experienced by parents; the experts who have replied negatively have probably misunderstood the methods I was referring to. On the one hand this is clearly a symptom of not knowing such systems for the benefits of speech and language acquisition in children with Down syndrome, and though not reassuring, it is a significant result anyway where a further research or intervention could start from. On the other hand, as we have seen and will see, even Sign Languages for deaf individuals have turned out to be successful for trisomic children's speech stimulation, so once again it is fundamental to appreciate directly from the carers of the children their experience in order to better understand the typology of this intervention and the various aspects that are too often ignored or distrusted.
The results given by the questionnaires sent to the parents of trisomic children show the diffusion and the validity of sign methods for enhancing the general communication in the mother tongue. Some of them nevertheless demonstrate additionally that signs have turned out to be a winning strategy also in situations of bilingualism.
The success and diffusion of the Makaton Vocabulary emerges from the very beginning of the enquiries with parents using sign systems: out of fourteen cases, nine of them have chosen this method to support communication with the trisomic child in their family. Nonetheless it is very interesting to notice that three parents use a Sign Language normally applied to deaf individuals, that is American Sign Language and Australasian Sign Language. Coherently however, these families belong to the nations where these last languages are normally recognised and used, that is respectively America and New Zealand. Thus the assumption that sign languages for non hearing people are not to be used with hearing impaired children is here immediately denied; what basically changes in the use of these languages in fact is just the methodology, which in the specific case of children with Trisomy 21 gets the personal mark of the parents who simply add the pronunciation of the corresponding word to the sign that is normally used by itself with deaf individuals. Clearly this particular application is not confirmed by any text nor I am sure is it considered in normal courses of Sign Languages, but it is rather the particular use these parents have invented to help their children communicate: here Sign Languages for deaf are seen as just a repertoire like others from where a parent can learn signs to use with his or her child.
I would like to call the attention then to a family who says that the system they use is a combination of American Sign Language and some sign the son has made up by himself. It is relevant in fact not to neglect the importance of the personal contribution to signing on the part of the children themselves, who sometimes may feel more at ease inventing a substituting sign instead of trying to use what they find too complicated.
Of the remaining parents, apart from one using Signalong, I mentioned before that the majority are Makaton users. Just one of them though using Makaton as the "official" sign system at home, declares to use also some signs from New Zealand and Australian Sign Language. These last two Sign Languages are applied when more complex concepts need to be expressed at home, otherwise the facility of relating to Makaton makes it the most suitable for the simplest things.
The way these parents came to know of the existence of signing for children with Down syndrome is mainly through the Associations they belong to: sometimes this was just an initial hint, in that subsequently the families decided to make research to deepen their knowledge on their own through web sites and books. In one case research on the topic has been necessary for the isolated nature of the family's country, Iceland, but in the remaining cases the advise has also been given by paediatricians, Speech and Language Therapists, teachers and friends. I would like to mention the situation in Luxembourg where there is a service called SIPO (Service d' Intervention Precoce) promoted by the Government that takes charge of all disabled children from birth until they enter kindergarten at 4 years of age. They offer specialised staff that meets the child at home one or two times per week and works with the child: the operators use Signalong and organise seminars for the parents who intend to learn it.
It is curious anyway to notice how out of fourteen cases, in less than a half of them the source for knowing about sign systems has been a specialist.
As regards the purpose of the sign system, its main function has been generally respected: the majority of families in fact adopt signs with their trisomic children mainly to stimulate the mother tongue. In two cases the mothers have specified an important function of signing which is strictly related with the aid to communication: by having the possibility of supporting an unclear speech with signs, the child has finally alleviated the sense of frustration that normally characterises the difficulty in expressing and understanding words. In particular one of the two mothers declares that she is perfectly sure her son, though very young, is able to understand what she says, but signs function as a feedback whose need is felt either on the part of the adult or above all on the part of the child who has thus the possibility of confirming and fixing his comprehension.
Finally, out of fourteen cases, four have added the function of signing to help translating a word from a language to the other in situations of bilingualism, so, though a minority, it is clear that the strategy of using signs to facilitate the switching between two linguistic codes is evidently taken into consideration among families with trisomic children.
When a particular sign system is accepted to be used at home either to have a stimulation of the mother tongue for a hearing impaired child or for different purposes, it becomes consequently and entirely part of the education of the child himself. It is an intervention with specific aims and precise structured patterns and for its relation to speech it follows the same way of linguistic development. Thus, while starting quite early, its use necessarily progresses at the same speed of new words and concept acquisition and stops only once the child appears to be more confident with the spoken language.
In this sense, as would happen with the exposure to language in a family with typically developing children, the use of signs for all the families questioned in my enquiry started very early, from a minimum of 5 weeks' age to two years. As well as a normal teaching of the mother tongue or of the second language in situations of bilingualism, the relevance of beginning very early with the exposure to a linguistic code – even if based on visual representation – has to be kept in mind if the child is required to learn and use it as soon as possible by having the structure of the code deposited immediately in his memory and constantly reinforced through use and repetition.
The same coherence and similarity with learning a real language is also found in the duration of the intervention with signs: this is what emerged from the responses of the parents to my question of how long they had used or have being using signs with their children. In just two cases the use of this method has lasted for a short period respect the actual age of the child, but focusing only on the length of the process in itself, we notice how it necessarily takes long time anyway: 2 years for a 10-year-old boy, and 7 years for a now 15-year-old girl. In this last case the child still uses some signs when he feels the need. The duration of the intervention does not depend on the specific kind of system, because these first two examples apply different signing methods with their children, Makaton and ASL.
For the remaining cases signing is still going on – but these are situations of very young children – otherwise the period of use ranges from 2 to ten years; I think that this can depend on the heterogeneity of the communication deficits among children with Down syndrome, thus a child might be able to abandon this support after few years while another one still needs it after long time. Often, though, the use of signs happens to be frequent and eager just in the initial years, to become subsequently just a hint now and then when the child is not able to remember a word or wants to express a difficult concept.
Still, while from the point of view of the duration a real language and signs supporting communication are very much alike, if we consider the frequency of use, the difference of their respective aims emerges clearly: in this case in fact differently from normal spoken language a parent can choose whether to apply signs every time he addresses the child or just now and then. Obviously this aspect depends also on the ability and need of the child himself: if he appears to use them just to reinforce the message and is able to abandon the sign once the word is learnt, the parent can afford to intervene only when a strong need is felt, whereas if the child's ability to speak is seriously affected and the signs are indeed fundamental for his expression, then the parent is induced to use them more often.
The responses of the families questioned demonstrate a balance between the two options, and it seems clear that the frequency of use has fortunately depended on their personal choice rather than on a concrete need deriving from the child's problems. Significantly, the main reason for a discontinuous use of signing is in fact the will of the parents to try to make the child talk as much as possible, limiting its application to just long and complicate words. In just one case the mother states her need to do so for not having yet a deep knowledge of the system to systematically sign with the daughter.
On the contrary, those who declared to use signs systematically have given simple but significant explanations, ranging from the great disposition the child appeared to have towards signs, to the aim of establishing a vocabulary through constant use and fixing of routines, and finally the need to avoid that the child can forget them if used just now and then. This is the case of a mother who noticed that the decreasing of the use of signs led her son to forget them and consequently not to be able to communicate as she expected.
If we count speech as the main presence indivisible from the sign systems used by these families, in all but one of the fourteen cases there have been however the help of other communication tools along with signs and symbols, such as pictures, flash cards in the various languages spoken at home (often personally created by the parents), books and interestingly sounds, as for example the sound of the animals or vehicles to teach their names.
Though not neglecting the relevance of additional supporting tools for the communication, I would like to focus on speech as the principal aspect used together with and facilitated by signing: most parents use signs to translate just the main words, or the key concepts. This is in fact the most common way families or carers follow when employing such systems; just three of them have specified that expressing the whole sentence with a unique sign has happened sometimes, whereas only one mother declares to have started with translating just the main words and then subsequently to have utilised a sign for each word, in particular when her son was developing longer sentences or in specific learning situations, presumably when more details and thus greater attention were required on the part of the child.
Interestingly enough, while the application and the efficacy of the sign system is generally confirmed by all the families, its use was never limited within the family: not one of them refers that the child was exposed to signing only at home, but rather with relatives, teachers, friends, sometimes even doctors, and few other times with the school mates themselves. The general impression deriving from these replies, as confirmed by a mother, is that every one who was in contact with the trisomic child at least tried to communicate with signs to facilitate comprehension and interaction. I personally would like to focus the attention on the fact that in all but one of the fourteen cases teachers are always indicated as sign users with the child, presumably after having attended a course as confirmed by a parent. I underline this detail as an anticipation of what I would like to suggest as a good starting point in Italy as well, where as far as I am concerned and according to the situation found in three classes attended by trisomic children, signs are probably far from being conceived as an effective method for either stimulating the mother tongue or translating words and concepts when a foreign language is taught.
In order to analyse the success signing had or is having among these families as well as the time required for his benefits to appear, I asked the parents after how long their children started to understand the signs, to use them and finally to translate them into clear spoken words.
Again the replies are different but I can easily assume that comprehension and use of these systems do not take long at all for the child who has Down syndrome. The period running from the initial exposure to signing until the child's understanding of the first simple examples ranges from a minimum of few days, when he copies the sign as soon as he sees it, to a maximum of six months: there is just one case where the child has begun to understand signs after one year. Again the great variety of comprehension skills is at the base of the different responses, even though here apart from the last case, there are no significant discrepancies.
Excluding three cases in which the child has not started to use signs yet, the same rapidity is found in performing the signs on the part of the children. The period is slightly longer by comparison to that occurred for the comprehension, but again not particularly long: from few days to a maximum of twelve months from the beginning of the exposure to signs, with the exception of the same child for whom the process also in this case has take one year and a half.
Finally, as far as the speech is concerned and the time taken for it to appear, the answers are unfortunately mostly uncertain as either the parents are not able to remember, or because the children rarely have started speaking only after the comprehension and use of signs, but rather were already pronouncing few simple words even before signing was introduced. Though without great precision, most parents are sure that it didn't take long for their child to start using speech as well as signs anyway, whereas three of them are able to give details: again considering the early exposure to signing, it seems that also speech was not late in appearing – eight months as a maximum and one year and a half for the child for whom it took longest. And as anticipated previously, eight cases out of fourteen show that the practise of signs after having learnt the corresponding word becomes discontinuous, the children sign just sometimes generally as a game or simply to reinforce something that they are not perfectly able to express with the spoken language; presumably it remains just a reinforcement of the spoken language also because it appears as a whole that these children enjoy very much signing. In just one case the mother enjoys in remembering how her daughter seemed not to intend stopping signing as she really enjoyed it to such a point that she preferred to spend more time in signing rather than with speech. Instinctively this could be seen as a danger for the linguistic development of the trisomic child and a confirmation for those who see sign systems as a risk that the child ends up by relying upon them thus refusing to talk, but the mother hastens to make clear that now her daughter is 15 and never stops talking.
Four of the fourteen families questioned about the use of sign systems are also growing their trisomic children as bilinguals, and with the purpose of demonstrating the relevant function of signing as a bridge between two linguistic codes, I added a separate series of questions regarding the efficacy and the applicability of these systems for maintaining and enhancing bilingualism.
With the premise that there are no differences depending on the specific methodology used, it appears that all of the families in parallel with the double exposure to the two spoken languages have adopted the signs for each of them– of course using the same sign system for both – instead of waiting for the child to be more confident with one language and then "translate" it into the other one with the support of signs. Apparently there haven't been problems in adapting the signs to the two different languages and cultures: though in duty to ask it, I presumed that noticeable variations occur only when the two cultures are very different and at any rate few are the topics that can require adaptations in signs, such as religion, climate and probably very particular food items. In this case there are basically two options for solving the difficulty of expressing a specific term or concept with a sign system that does not include it in its vocabulary: one mother for example admits that sometimes when a specific sign was needed she has preferred to invent immediately a sign that followed the easiest understanding criteria for the child. However this intervention was not frequently made for the will of this parent to remain consistent with the rules and structures of the chosen system. Otherwise, as several parents have made and still do, there is also the possibility of asking the representatives of the system to have a particular word translated usually through the web site and the discussion forum.
I was finally struck by the answer of a parent who is growing her son as a bilingual and is using signs to stimulate both languages. When asked about the possible utility of signing as a passage from a language to the other especially in situations of bilingualism, she answered that definitely sign systems are intended as a link between verbal and non verbal language and not between two verbal codes: she did not see any reason thus for using signs to connect spoken languages. I cannot disrespect this explanation, also because the definitions given by this mother are correct; but I feel that if the aspect relies solely on a matter of definition, the opportunity of exploiting other functions of the sign system can be lost: undoubtedly Makaton, like several other systems, is a link between verbal and non verbal language, but it is the personal use successfully experienced by parents, perceived and sometimes confirmed by experts that gives signing the adjunctive function of helping the child cope with the exposure to two different languages spoken at home. In this case the procedure would require a further passage for the child to be taken in mind: the word that he hears first in a language and then in the other one has its meaning in a visual representation offered by the sign which he has undoubtedly to learn, but this should not be seen in my opinion a hinder or a worry for the parents. Children in fact seem to enjoy the use of manual gestures and to pick them up very quickly: excluding a priori the use of signs for purposes different from the official one seems to me a limitation to either the various exploitable aspects of a supporting system or eventually to providing the child with alternative strategies.
The conclusions that optionally were added by the parents agree in confirming the great efficacy of signs as an easier and faster way for communication on the part of the child and his carers; for some of them it has been and probably remains merely a game, enjoyable, useful, but left in a background on behalf of the spoken language. For other trisomic children it has represented a strong impulse to expression and comprehension, and clearly a noticeable decrease of frustration for not being able to be understood. None of the parents has written that signs have taken the place of speech, on the contrary I do mention one case in which a mother gladly states that as soon as her daughter had learnt a sign, she was able to pronounce the corresponding word correctly.
I cannot but agree with and support the positive attitude parents demonstrate towards signing and highlight the concrete benefits for their trisomic children in personal expression, self-esteem, and language connection in bilingual contexts.
Once again, when the people who are much in contact with the child point at a specific method declaiming its utility, I would even more promote it indiscriminately, trusting in their experience and judgement especially because these specific systems very often turn out to be not completely known even on a theoretical level from the same people who surround them with an aura of uncertainty or scepticism.CHAPTER 5
The aim of this final part is to focus attention on a specific methodology to teach children with Down syndrome a foreign/second language as a curricular subject at school, in particular in the Scuola Elementare where at the moment this kind of teaching has become compulsory from the first year.
So far the necessary premise to do so has been the analysis of the various aspects concerning trisomic children ranging from their cognitive development to the evidence of their ability to understand and speak two or even more languages, to finally the most effective methods for stimulating their communication. In order to propose an intervention regarding teaching a foreign language in fact, I needed to appreciate all the aspects that have a part in this possible process, and above all – conditio sine qua non – whether the process itself is actually possible.
The starting point thus was the deficits affecting the cognitive growth and the consequent difficulties in speech and language performances: the analysis has highlighted the need of exploiting a channel to convey information which is different from or added to the auditory one; subsequently, a method based on strong motivation and repetition has turned out to be a plausible solution for a poor short-term memory that prevents these children from having enough time to process the information they receive from outside and to produce a correct output.
The numerous contributions from families with bilingual trisomic children have proved that despite the problems in communication even in the mother tongue, the Down syndrome does not impede to learn and practise a foreign/second language.
With this in mind, considering that my proposal would be intended for the Italian Scuola Elementare, I thought it was my duty to check first how all the characteristics belonging to the Down Syndrome's world were taken into consideration at school and whether a specific method had been adopted to teach them a foreign language. As far as the use of sign systems is concerned for this purpose, I was already presuming that it was probably not even conceived, either for a generic knowledge of the programs at school which I know do not include signing as a support for the disabled children, or for the innovative aspects this method has in itself, probably difficult to be accepted by an often traditionalist teaching mark typical of the Italian school.
I felt nonetheless in duty to pay a visit to those schools attended by children with Down syndrome in Venice to appreciate their way of learning English but also in order not to leave all the research at a pure theoretical level and see on the one hand concretely what I had mostly read in books and articles, and on the other one to refine my proposal on the base of an accurate observation of the behaviour of these children as well as that of the teachers in class during English lessons. My intention and the aim of my visits were certainly not that of controlling and criticising the methodologies in use: the observations and objections I have to state about what I saw are thus not intended to diminish the work of the teachers but the consequent and necessary reaction to a study that tries not to be passive but rather constructive.
My four visits in three Scuole Elementari have been undoubtedly a precious chance of appreciating other aspects connected with the scholastic environment, particularly that essential and determining characteristic never to be forgotten in a research where individuals are concerned, that is the children's uniqueness and their personal way of living in a scholastic community, as well as their different background and family education.
The cases are not numerous as the research has been limited to Venice and the neighbouring province; the difficulty found sometimes to access the classes has been another relevant element that has contributed to slow down the course of the research.
In the end however the visits have been successful in that I had the chance of observing what I needed for the research; the aspects that I would like to describe now are thus:
This first case is actually divided into two separate visits, the second having taken place on the 25.03.04. Only in this case I had a short exchange with the parents which functioned as an introduction on the disposition of the child towards the foreign language. Though useful this can certainly be, I must admit that I did not intentionally collected much information about the children before meeting them in order for my observation to be less influenced and more receptive of the details.
The child is six year old and attended the first year of the Scuola Elementare; he was not new to learning English, which he started at the kindergarten, though during very few hours. His mother stated that he seemed to enjoy learning a foreign language and even pronounced sometimes at home some simple words when joking with the parents. His initial experience of the English language was confirmed by the Support teacher who once I went in the class showed me the copybook the child used in the kindergarten: it was indeed rich with cuttings, photographs representing very common objects such as umbrella, home, book, ball, etc. Though the presence of the child was clear in the way these pictures were coloured, I immediately noticed that the handwriting for the names of the objects were not his, but rather of an adult, presumably the teacher. As well as this detail, which I personally find relevant, I also read some words in the copybook which I consider rather difficult for a child, such as compound words (waist-coat, rain-coat) or words with a particular gap between the way they are written and pronounced (scissors).
At any rate the general impression I had observing the child's attitude when the English class started was positive: he followed the instructions of the teachers and tried to do his best to complete the tasks. If there were particular behaviours such as restlessness, or a vague tiredness towards the end of the lesson, it seemed not to depend on the subject but rather to the specificity of the moment (English lesson in this class was immediately before the break and this child in both visits tended to be very willing to have breakfast).
His disposition towards me was immediately quite open, almost warm in our second meeting; while not giving great importance to the aim of my visit, he started showing me the comics he was reading and expressed his curiosity about the pen and the notes I was using. My position was on his right side, slightly behind his back in order not to distract him and to observe and listen to his interaction with the teachers.
The premise for the analysis of the method used in this case was immediately referred to me by the English teacher and concerned the Scholastic Reform according which teaching a foreign language at school from the very first year has become compulsory: the novelty brought by this decision has created a gap in organising the program for the first two years, being already in use before the Reform the foreign language only from the third year on. This problem, as far as I could see, affected more the finding of proper material and books for the teaching of English in the first year rather than the organisation of the lesson itself, which was indeed quite linear and positive, almost enjoyable for the children.
The efficacy of the lesson and the disposition of the children towards it relied initially in the use of music with some songs about witches and ghosts that the trisomic child seemed to know and appreciate noticeably. The tape was put for several minutes and the song repeatedly listened to and sang by the class: in both my visits in this class I can state that this was the moment when the child's attention was at its top, his attitude extremely positive – smile on his face, amazed look, immobility on the chair – and his speech in English slightly more stimulated in the repetition of the final parts of the words in the songs. This was a first confirmation of the utility of music with Down syndrome children who always show to enjoy singing and dancing, making rhythm and songs a profitable means for stimulating their speech, vocabulary as well as fine and gross motor skills through articulation and movement.
If for the rest of the lesson the child was constantly facing his Support teacher seated in front of him or looking at the paper on his desk, listening to the tape was the only moment when I saw him turning his face to the English teacher's desk on his right where there was the tape recorder. The songs had a very good volume, clear and without disturbing noise and they all were very short and repetitive. Together with a simple text the teacher had added some gestures to accompany the key words: unfortunately, either for the succession of the gestures, maybe difficult for him to be followed, or above all for his deep concentration in the song, I did not see him repeat the movements. What he seemed to enjoy most was in fact the sound, the music in itself: as far as the repetition of the text was concerned, he only isolated the final part of some words and reproduced a similar sound. Only in the second visit did I have the chance of hearing him pronouncing clearly a couple of words regarding animals, but the details of this fact will be given in the section regarding the use of English.
Besides the support of the music, the approach used with the class and thus with the trisomic child – he follows in fact the same program of his classmates – is based mainly upon games and easy tasks such as colouring images or identifying pictures whose name is mentioned in the tape. The first time the main activity was a Bingo of Colours, where each children had some coloured cards which they had to take away if the teacher called the corresponding colour; the winner was the first child remaining without any card. Unfortunately, due to the absence in the lesson where the cards had been prepared, the child had necessarily to pick up with their colouring and cutting. This clearly led him not to take part to the game for most of its duration but gave me anyway the possibility of observing how he enjoyed using colours and was willing to cut the shape of the cards. Though showing to know the name of the colours in Italian, I actually never heard him mentioning their translation in English; on the contrary I noticed in him a tendency to insist upon names which were incorrect, recognising this as a quite common feature in children with Down syndrome.
I would like to focus attention on the activities that took place in my second visit with this child: as the topic was the animals in the farm, the starting point was the famous song " In the old factory", which once again had the power of sticking the child to the chair and amazing him completely. The tasks connected to this new topic were nonetheless slightly more difficult by comparison with the previous time. The first one, which took more or less half of the lesson, was to identify some animals drawn in the book through the description of the tape which mentioned the name of the animal and its colour, while the second one was called " Strange Animals" and consisted in recognising the two animals composing one picture (for example, the head of a hen and the body of a rabbit). In both cases the input given to the child was in a sense double: in the first task he had to understand two words – the name of the animal and its colour – and in the second one he had to isolate the shapes which I personally found rather difficult to recognise or not completely distinguishable, so that some parts of the animals could equally belong to a specie or to a different one as well. I cannot say that the results of these two tasks were successful, and though I will shortly explain the possible reasons, I can anticipate that the general impression was of too much input to decode on the part of the child, who nonetheless that morning was particularly restless and unwilling to finish the tasks.
The general impression of the relation between the child and the teachers was immediately positive, especially for what the Support teacher is concerned. The English teacher had obviously to deal with the rest of the class, but she never missed to have a look now and then to the child and, especially in my second visit, was even more disposed to come to his desk and see what he was doing.
The children close to him and the class in general appeared to be extremely used to the presence of the child and his Support teacher and also to the idea that this child needed to be followed with more attention and sometimes with tasks slightly different from theirs. During the break I could notice how the child preferred to play by himself, or with one or two people, and that now and then some mates showed their affect towards him, as in the case of a little girl who included him as well while showing me some pictures of animals.
A particular mention is to be made regards the Support teacher and her amazing disposition towards the child, her professionalism and at the same time kindness and collaboration with my research. Needless to say that the child was, and I presume still is, very affectionate to her, even when she necessarily had to show authority and severity towards him. Though lacking the specialisation required now for Support teachers, she represents a clear, undoubted proof of how passion, cleverness and good disposition can compensate the absence of a title and be a positive, tireless and precious guide for the trisomic child.
If I have to reflect upon this child's integration in the class and relate him to the scholastic program, I can declare with no hesitation that this was a very good example of inclusion: few modifications have been made to the child's Piano Educativo Individuale by comparison with the general program for the class, specifically focusing on his major dispositions.
When I arranged with the English teacher the visit in this second class, I was advised not to expect to see a real English class for this trisomic girl, in that the program followed by the rest of the class was not the same for her. Given the poor results on the part of the girl in the previous years and above all the project the English teacher had now for the class, the teachers had agreed to make her spend the English lesson with different and more appropriate activities according to her major dispositions, that is drawings, manual works, physical exercises or painting.
Apparently there would have been no need for me thus to go and see something completely different from the teaching of English to a girl with Down syndrome, but luckily the final decision to meet her all the same gave me the chance of seeing and reflecting upon several relevant aspects. Honestly, the fact that she was not learning a foreign language in her fourth year of Scuola Elementare was already a significant index of a distinction certainly affecting the process of her scholastic integration. Before meeting and talking to her, I couldn't be sure anyway whether following other activities for her depended really on a great difficulty in learning English and on the avoidance of trying to teach her something she would not even have understood, as the teachers said.
I must admit that though in a particular case such as this, where the girl actually did not follow this subject and a methodology to make her keep up with the program was lacking, I found an extremely open disposition on the part of the Support teacher to collaborate with my enquiry and to let me stay close to the girl during all the lesson. The idea of the teacher to ask the girl to show me the book of English she was using the previous year was my unique, precious chance of testing the method applied till that moment and above all to check her disposition towards the subject. Though I finally collected the kind and quantity of observations I needed for my analysis, I must make it clear once more that they refer to how she learned English the year before my visit, which has been possible thanks to this girl's amiability and attention in showing me and describing her English book as well as in singing to me a couple of short songs the class had recently learnt.
This was the first aspect that struck me when the girl started to show me the activities and above all the various characters of her English book: she seemed to remember some of them, in particular a baby bear which she could mention every time she saw it in a page. We have to consider that several months had passed since this girl had last used that book, but she could recall several details by just having a hint by me or by the Support teacher. During all her presentation of the English book to me, I must say that she seemed quite motivated and glad to illustrate the various topics, page after page: maybe for the older age, maybe simply for the variety of the trisomic children's characteristics, this girl had a really strong concentration and persistence in what she was doing, there was nothing of the restlessness and need to constantly move of the first child I had met. The first impression I got from her attitude towards this book was that learning English had sincerely interested her the previous year, and the words she was able to recall were a clear evidence of this fact.
The level of difficulty of the book was obviously slightly superior than the book I could see in my first visit, but all the same quite rich with images, very coloured and spacious. The protagonists were a family of bears that passed all through the topics offered by the book: parties, celebrations, holidays, with constant mentions to colours and numbers. I realised how, by comparison with the first book, the presence of the same characters throughout the book was indeed very useful for the child to remember their names and to have a constant reference point, a kind of travel companions.
Also in this case the affection the girl showed towards her Support teacher was evident right from the start, even though this did not prevent her from staying all the English lesson seated close to me and very willing to interact. A curious detail I was advised of was that with great difficulty was the child able to stay with two teachers at the same time – for this reason the support teacher chose to stay all the time in a separate desk a couple of metres from us – because she felt more at ease with just one representative of the scholastic authority. Apart from cases when she enjoyed taking part of a large group, she mainly preferred the one-to-one relation. Quite different was the attitude she showed towards the English teacher, who honestly dealt very little with her: the child seemed almost made shy by her presence – actually quite austere and strong – to such a point that the few times she was addressed to by the English teacher, the girl remained with her face towards me and answered with a very low voice. The reason why the English teacher talked to the girl was because the class was preparing a comedy to act at the end of the year. It is mainly for this reason that the child was excluded by the activity, in that the text that I personally saw was rather long and often complex: nonetheless the girl had a small part in the play, presumably a part where she did not have to speak, though I could not confirm this assumption. So while the rest of the class went on reading the text of the play, she was completely uninterested to what they were doing, and vice versa.
Her mates were generally used to her presence, even though I did not have the chance of experimenting a real contact between them, apart from an amazing case of a little girl who before starting the English lesson spontaneously came to the trisomic child's desk and started to play "Memory" with her, as if it was something they did every day. This was a precious occasion to observe the girl's noticeable visuo-spatial ability in that she could easily remember the position of the covered cards, and to notice her quietness and good disposition while interacting with her little friend.
Though interesting and rich the chances of observing this girl might have been, it is needless to say that this is a clear situation of an incomplete integration of the student in the scholastic program. If the process of integration itself is constituted by the child's inclusion in the interaction with the teachers and the class mates, it is fundamental that the same child may receive the possibility of following the program like the rest of the class. The Piano Educativo Individuale and the Profilo Dinamico Funzionale described in the first chapter are the starting points to give shape to a program specifically intended for the disabled child, which encourages his or her dispositions and reinforces the most lacking aspects of his/her knowledge.
In this last case yet, the teaching of a foreign language has been simply deleted from the program to be followed by the girl on behalf of some other activities that have nothing to do with English. As far as I could notice, the decision had been taken within the teachers, and it is significant enough that the girl's mother appeared to regret this change, complaining that at least few words were pronounced by her daughter the previous years and that it was a real pity not to hear her mentioning them any more. What I find quite demoralising is that I honestly cannot agree with those who stated that the will to teach her English was a useless effort; on the contrary I was really fascinated by the liveliness of this girl and the disposition to learn she showed to have. I cannot deny what the Support teacher revealed about the difficulty they all had the previous years to make her gain the level she had achieved: for the same reason that certain objectives have undoubtedly been gained, I would say that even the duty of teaching her a foreign language should be thus pursued and realised. The perspective of a greater difficulty that always surrounds these projects should not justify such as an important decision as to give up trying to teach the disabled student the same subjects studied by her mates.
The interest of this last child seemed to me extremely poor at the very beginning of my visit: he sat on his chair having his break and did not even look at me. He simply remained silent and did not answer my questions and attempts to make friends with him, to such a point that I started asking myself what could be his attitude and application to a foreign language if he did not seem to be willing to communicate even in the mother tongue.
The initial, discouraging impression was luckily explained by an assistant who told me that remaining silent and by himself during the break was a characteristic of this child, and actually I could rectify then the initial feeling of isolation he gave me.
Honestly the English lesson in this third-year class of Scuola Elementare was not strictly defined; it was more a revision of some exercises and several separate activities made presumably to collaborate with my research. The presentation of the English items and exercises was indeed rather fragmented and did not follow a specific lesson project, and probably for this reason the attention of the child was present, but his collaboration to the tasks quite automatic and passive. From this unique visit I could not state precisely if the child's interest in the foreign language was difficult to test – low at any rate – because a real motivation was not given for this subject, or else if the reasons depended on the child's personal taste.
What I could observe in this last case was a child interested in only some parts of the lesson: again the tape with a couple of short songs had the power of amusing him, making him smile and move rhythmically, and clapping his hand together with his class mates as the song required. The song was the famous "If you are happy and you know it clap your hands", which has three movements to be made in sequence involving hands, feet and head. He just moved his hands simply as a rhythmical gesture associated with the initial part of the song. Curiously, the second song's words were substituted by him with the names of his brother and his beloved father, which he repeated constantly following the rhythm of the song.
A great affection was for the Walt Disney's characters which he recognised in his English book by mentioning their names in Italian, Biancaneve, la Strega and some of the seven dwarfs; unfortunately I cannot say to have heard him pronouncing any English word, as he simply pointed at them on the page and used his mother tongue to mention them, which was additionally slightly hard to catch because of his very low voice that made the final parts of the words vanish.
Out of the three cases I could check, this was probably the most traditionalist one, in that the exercises were based upon question/answer, input/repetition, and the solutions were rather suggested by the English teacher than found by the pupils. Even more so in the case of this child, who was on the one hand quite attentive to what was said about the exercise, but indeed rather passive in the response, in that his actions, such as circling an answer or checking a word were made on the instructions of the English teacher. He had a copy book for English, quite tidy indeed and with pictures coloured within the limits, but again there was a great quantity of adult handwriting, as if the main task of the child was relegated to colouring the images.
As well as the directions given by the English teacher, a tape gave the instructions for completing an exercise, a clear and audible voice which could almost compete with the extremely loud, shrill voice of the teacher. If on the one hand the class seemed to be used to this method and simply followed the instructions of the teacher most of times correctly, this same way of teaching gave me the impression of being almost useless for a child who conversely needed motivation, repetition and constant, captivating stimulation.
Even the presence of the teachers close to the child was rather confusing, to such a point that I hardly understood who was the real Support teacher: of the three I met this was the oldest, probably more than fifty years old, towards whom the child had nonetheless a very sweet attitude. Honestly I could observe very little about this aspect in that she let me seat quite soon close to the child and after half an hour she simply went away, leaving the child with a young lady whose function must have been of simple assistance. The attitude on the part of the English teacher was indeed more direct, frank and sometimes necessarily severe for the tendency of the child to be distracted or to search for the attention of his mates upon himself. Basically the feeling was nevertheless very affective, and at times I instinctively compared the relation between the English teacher and the child to that between a grandmother and a grandson: if on the one hand this behaviour could do no harm at all to the child, on the other one it gave me an imprecise sensation of an out-of-place attitude, resembling more the one existing in a familiar environment rather than a usual scholastic behaviour.
For what I could observe about the relation of the child with his mates, there was almost no occasion to check this aspect, mainly because of his voluntary isolation during the break which would conversely have been a good chance for playing with them. Finally the atmosphere of a general severity due to the teacher's constant and strong invitations to remain silent and attentive did not leave time or will to interact at least with the Support teacher as happened in the other classes I visited.
Admittedly the child had his place in the class, surrounded by his class mates andcertainly loved by the teachers who alternated to his desk. But once again I ask myself whether we can talk about scholastic integration when a child almost passively follows a program, or more often a speed in teaching which does not consider his need for repetition and a longer time to understand and complete the task as well as all the other relevant aspects typical of the children with Down syndrome.
Even in this case the exercises were finished, the tape was listened to by the child, but the English teacher herself confessed that probably he did not even know what he was doing. At the end of my visit my sensation was to have seen a typical case where the concept of integration simply meant incorporating a disabled student in the rhythm imposed to the class who has clearly different capabilities. The need for slowing down the course of the program or at least of the lesson is often in these cases conceived but not realised in the every day scholastic life. The result cannot be other than concluding the program as expected but having as well a child who probably hasn't even realised what the program was about.
Apart from the first case, where the activities made with the child was almost entirely adequate to his capabilities, I must honestly state that the balance of these four visits was not completely positive.
I have nothing to object about the application of the concept of integration in the class: it is significant that out of just three cases one regarded the exclusion of a trisomic girl from learning English, but it has to be said that the same girl was attentively followed, stimulated and undoubtedly well treated, as were the other two children.
Yet the sensation I felt when reflecting upon the methodology adopted to teach these children a subject which would be by itself rich of stimulation and motivation was that of inertia. It seemed to me that before inevitably transmitting it to the child, the teachers and the scholastic system was the first to be penalised by a sort of passivity in front and instead of the need and possibility to make few more efforts and render the teaching tangibly more effective. When faced with the will to find proper and functional devices to improve the teaching method and consequently the child's response on the one hand, and on the other one the evident low efficacy of the methods currently in use, I really wonder how the choice tends often towards the second case which seemed to be largely preferred.CHAPTER 6
I certainly did and could not expect in my visits to see the children constantly exposed to the foreign language with a consequent appreciable reception and output on their part: in few words, though the proof that trisomic children can learn a foreign language comes from cases of bilingualism, I could not expect to see the same level of English knowledge at school in the few lessons they attend, as the quantity of verbal input deriving from a double exposure at home or constantly given by the community where the child lives is undoubtedly the key-point for achieving the objective of having a trisomic child bilingual. I am perfectly aware that the modality and time of exposure for bilingual trisomic children cannot be found in classes where the different environment and a sensibly shorter time of exposition to the foreign language reflects itself undoubtedly upon their linguistic comprehension and performance.
Thus the crucial point is to find a procedure that covers this gap, that best exploits the few hours of foreign language lessons at school: the aim here is not to make the child reach a condition of balanced bilingualism, but to teach him to understand and manage the level of foreign language offered by an Italian mainstream Primary School.
Besides these undeniable prerogatives, there are other aspects which have to be considered to increase the efficacy of the method itself. Thus in my opinion it should mainly
Clearly the method I choose is not personally and newly invented, in that it is already in use with trisomic children especially in the United Kingdom with different aims. Nonetheless the introduction of the use of signs for teaching a foreign language in the Italian Primary Schools appears not yet to be considered, as shown by the low knowledge – if not of the method itself – of its aims and applications.
As seen for the mother tongue, sign systems such as Makaton rely upon the visual translation of words and concepts. By being exposed to it, the child with Down syndrome soon learns that there is a visual way of expressing what other people normally communicate through speech, and as long as he is not able or does not feel confident with the spoken language, he can use this visual appearance of the word to express his needs and thought. For this reason it is fundamental that together with the sign the corresponding words are constantly pronounced by the interacting users so that when the child learns its articulation and sound, he spontaneously abandons the manual gesture to communicate with speech.
In my opinion this is the passage that would start the process of using signs to learn a foreign language: I think that the child needs to fix in his mind the sign corresponding to a word in his mother tongue first. As confirmed by the families themselves, very little time is actually required for the child to learn the first basic signs for the most common words in use every day, which in a class would mean the most useful signs to indicate activities, scholastic objects but also requests such as the need to go to the bathroom or the will to have a break. In this way, as well as starting to translate some of the words most mentioned in class, the child has also the opportunity to apply signs for extra contexts and get more used to them.
The double passage that I mentioned derives from the need to translate the Italian word into the English one: the fact that in this second passage there is a fixed reference point for the child is in my opinion what makes Makaton a plausible method to be applied to foreign linguistic contexts. The child in fact, while listening to the a foreign word referring to an object, still sees the same sign that previously indicated that object in Italian, and understands that the foreign word is the equivalent of the one he has learnt to sign. Either with the child's conviction that a foreign language is just another way of saying the same thing, or through his awareness that he is learning a foreign code spoken in a different country by a different community, the objective of making him understand the meaning of a new foreign word becomes easily achievable and rapid.
Clearly for the first times the sign should be accompanied by either the English or the Italian word, moving then progressively to the phase where the teacher gives every time more attention and emphasis on the foreign word, until only this one is used together with the sign. With the premise that the trisomic child naturally and largely tends to imitate the action with which he is mostly addressed to or the one he is more induced to repeat, there should be consequently a slow and gradual switching of the child from the use of Italian words on behalf of the English ones, and most presumably a quicker abandon of the sign in that the Italian translation of the word in his mind should already function as the main reference for the meaning of the English word.
I am sure that the effectiveness of the sign method would rely also on the innovation it certainly represents in the class and most probably would become an incentive also for the class mates to learn it and use it with the child. I would have never proposed a method if I had guessed that it can create difficulties and delays for the teachers or the mates: Makaton is easily and rapidly learnt either starting with a workshop, or also by oneself, with manuals or indications from the web site, where any request about new signs is constantly satisfied. I think it would not be seen as an obstacle or a task or subject to be additionally and separately learnt; its use would be picked up by the trisomic child rather as a game, without any fear or anxiety connected to its function and aim.
Objections may arise on the part of the Makaton founders about the application of the sign system deriving from the British Sign Language to a community that does not use English as the main language. "On no account – it is written on the Makaton web site on the section regarding its international diffusion through adaptations – should signs from British Sign Language be used with the Makaton Vocabulary (adapted version) in other countries where BSL is not the language of the deaf community",64 as a conclusion to the right observation that a sign language reflects all the aspects typical of a culture – climate, food, religion, etc. – and thus very distinct communities – English and Arabic for example – would translate their words into quite different signs. For this reason Makaton should not be applied in contexts different from that it was originally conceived for. "Signs from the language of the deaf community – it says then – in the particular country where Makaton is to be introduced must be matched to the Makaton Core Vocabulary (adapted version) and used in that country. Only these will be relevant to the cultural needs of the users."
The objection on my part is that English and Italian communities do not differ significantly in the terms seen above, and though Italian Sign Language might be different from the BSL, the application of this method would allow the trisomic child to use signs to represent the key words in a sentence, without necessarily translating all the grammatical items and structures, which would be the case of a national Sign Language. Secondly, the use of signs has turned out to be momentarily in the situations I propose it for: in families where it combines with and support the mother tongue it can go on for years, but also in those cases it has been shown that they are progressively abandoned by the child once the corresponding word has been learnt.
In my proposal, the use of Makaton is even more limited to a subject at school where it would be reduced and referred to specific items that need a visual translation: as already explained, its function would be a passage from a word, to an image, to finally a word in a foreign language.
I personally do not see any hindrance on the application of a system which is openly intended as a support for language to help a hearing impaired and more visual child understand and keep in mind the meaning of a word or a concept. Moreover, the great majority of trisomic children in Italy learns English as the foreign language at school, so the use of Makaton wouldn't be completely out of context: though not the mother tongue, the signs are nevertheless connected to the foreign language taught at school.
Finally, as the use of Makaton I advance for learning English does not necessarily include its use outside the school in the community, there is no risk that the child ends up by using a sign language incomprehensible to the community where he lives. My proposal is not so pretentious, and I think that on no account using signs taken from a system based on BSL can be confusing for a trisomic Italian child. Adopting a system already in use and whose efficacy has already been tested is simply a more rapid solution instead of waiting for an adaptation to be made according to the advise of its founders. I do not exclude that in the future such a change can be realised within the Italian context, and that the new system would derive directly from the Italian Language of the deaf community, but this would at the moment slow down the immediate application of the system itself.
If the introduction of the Makaton signs in class attended by children with Down syndrome is most presumably an innovative aspect in teaching a foreign language, there are nevertheless already existing strategies for the same purpose which in my opinion would need a renewal or integration in order to be more functional. Some of them were normally used in the class I visited for my research, some other are probably not known but anyway easily found in the Web and applicable to these contexts.
Even more so for those aspects that need to be reinforced and do not depend on any equipment or tools, but simply on the training and the disposition of the teachers and are fundamental for gaining a greater awareness of the disability at school, giving thus the programs more attention, adequacy and efficiency.
For this reason, besides the use of signs, my intervention ranges on the one hand from the introduction of specific means for enriching and enhancing the teaching of English particularly based upon a visual presentation such as
But on the other one it has a particular attention to the fundamental elements at the base of a good teaching of a subject like a foreign language, that is
Collecting the words progressively learnt by the child is always a good idea for having them at hand to be recalled and repeated, and to visually appreciate the progress made during the year. In the case of a child with Down syndrome, in parallel with the strategy of signing, I would immediately propose a dictionary applied to the most used signs and words learnt during the class activities: in order to have a more complete representation, the dictionary's pages could be divided in three sections, one for the word, the second for the corresponding image (a picture or a drawing possibly made by the child himself) and the third for the sign.
The criteria for collecting them is at the discretion of the teacher who should advise the best way for the child to remember new items: indicated as one of the possible deficits affecting trisomic children's short-term memory, similarities in the sound of two or more words for example can be confounding for the child who is not perfectly able to discriminate and isolate the difference. The dictionary of words/signs can be structured following the alphabetical order, or even better according to semantic meaning (body parts, weather elements, colours, numbers, animals, etc.).
The objective of this task is to have the possibility of seeing a static equivalent of the sign in a written or drawn form, which is basically the symbols' function. Symbols in fact are the signs made static and constantly visible; even though a sign can be held before the child, there might be the need of making a succession of signs to represent a story or just a sentence. In this case signs must be printed or reported on a tangible support in order to move, substitute and skim through them according to the need.
Makaton and other sign systems have a section dedicated to symbols, which can turn out quite effective and profitable especially if applied to locations and directions, such as bathroom, library, exit or special rooms inside the school. In this sense Makaton symbols have a large diffusion also when timetables are represented: each activity are accompanied by a symbol so that the disabled child can concretely see what he is going to do at school.
Actually my proposal tends more towards a means already in use in classes with or without trisomic children: twice in three visits I noticed the use of flash cards with a drawing and the corresponding word explaining it. On one side there was an adjective and on the other one there was its opposite, and the availability of the two words so close to each other made the children create the association between them. The use I would prefer is not exactly the one I saw based upon showing the card and make the pupils repeat the word, but rather in a process similar to the use of signs for the spoken language, that is in combination with the key words in a particular text such as a song, a nursery rhyme or just instructions for a task; in this way the child would have the possibility of imprinting more successfully the association between an image and a word or concepts thanks to the context they are included in.
Given for example the high frequency of songs in a class, and as the songs are often the same for a long period, I think that having the succession of the story explained by three or four flash cards can be useful for the trisomic child to understand the meaning of the song and thus not to limit himself to follow just the rhythm or to hint at the movements. Besides seeing the visual representation of what is being said, the child learns also to read the corresponding word acquiring the skill of recognising it subsequently in different contexts. This aspect is strictly connected with the Whole Word Method, according to which it is not necessary to teach a disabled child to discriminate the single components of a word but rather to provide him with a whole vision of the word which he learns by looking at its visual configuration and apprehends its sound by hearing and repeating it. I am sure this method would turn out to be even more advisable when teaching a foreign language is concerned: as regards English in particular in fact, it is quite hard to think to teach a trisomic child the difference in writing and pronunciation by comparison with the Italian linguistic code. It is far better to wait for him to gain confidence with the pronunciation of the words that he progressively learns to recognise and then secondly to start explaining few essential rules of pronunciation belonging to the English language.
The Whole Word Method, known also as "look-say" or "whole language" method is often mentioned in opposition to the most common "analytic" reading, which more traditionally allows the reading of a word through the decoding of letters or group of letters and which consequently implies a level of phonological awareness that is rarely found in young trisomic children. This may certainly be practised anyway, and the results can be encouraging,65 but as regards a foreign language, I would personally choose a strategy that exploits their major visual ability without anyway precluding them the chance of learning the words' components, integrating thus the intuition of a word from its graphic representation with, further on, the knowledge of its separate phonemes.
Flash cards can be substituted or integrated by the Compic pictographs already mentioned in chapter three, which for their high level of iconicity can properly function as a clear visual reproduction of rules, instructions, names of places and any other element included in their topic-based cards.
When I think of combining parts of text or speech with cards, I do not refer to the grammatical structure or the specific morphology of the words; I would rather use flash cards or Compic pictographs with their main and basic function, that is to convey information and to visually express concepts. It is possible to have a first look to the configuration of the pictographs in the Compic web site, where a pack of them can be pursued.
In the web site mentioned above, by clicking on "Story Circle" the teacher will find several famous tales (Cinderella, The Rupee Tree, Princess and the Pea, Little Red Riding Hood) to listen to together with moving images representing the main events and characters: they are collected according to the topic – animal stories, bedtime stories, fairy tales, etc. – and either the voice or the pictures are very clear. A good starting point for a better comprehension on the part of the child would be to introduce the story in Italian before listening to it in English, so that, although the text is very short and simple, the sequence would be easier then to be followed.
Other captivating short stories can be found in a most lovely web site, www.peterrabbit.co.uk, where clicking on "Storytime" the child can listen to five stories and watch the images moving as the plot goes on, all of them based on the Original Tales by Beatrix Potter. The pictures have the typical soft colours used by the author in her books of tales, so they are all very nice and detailed. For the level of vocabulary and sentence structure, I would advise this web site for nine or ten-year-old trisomic children, together with tasks that may fix and reinforce the words learnt from the tales.
The web site www.bbc.co.uk/cbeebies/ gives also the child the chance of completing the text of the short tale he has heard. By clicking on "Nursery rhymes Makers" in fact, the child has first the possibility of listening to several simple nursery rhymes ("Humpty Dumpty", "One, two three..") accompanied by images for the key concepts, secondly he can read again the text where the key words are substituted by drawings, and finally inserts the missing words in the same text: in this last passage the words are actually represented by the corresponding object, but by passing the mouse upon them, the picture returns to be a word, so that the child can have the confirmation that it is the right missing word and move it in the blank space.
I find this exercise particularly adequate either for its connection with a story, or for the three steps required to be completed, which clearly function as a brush up of the words and the story itself. The child in this way, as well as learning a new tale and watch it represented by colourful and "living" images, practises his comprehension skills and rehearsal, and above all exerts his memory in recalling the missing words by either reading them or watching them drawn.
The task can be found at www.bbc.co.uk/cbeebies/funandgames/index2.shtml.
Memory can also be practised by the child with the game of the postman: www.bbc.co.uk/cbeebies/funandgames/flash/postmanpat/patgame.shtml: the image of a postman moves within a square representing the city and its inhabitants and delivers three parcels to three different persons who each time are mentioned and highlighted. The aim of the game is then to remember in which order the three persons have received their parcels: I think that the choice between just three characters is the most appropriate to the age and the cognitive level of these children, who would probably get confused with more characters to remember. The instructions then are quite brief and in a clear and simple English, and once the child has won the first turn, he can go on with another one.
Finally, the most known game for practising and stimulating the trisomic children's visuo-spatial awareness – in many of them quite noticeable indeed – is "Memory", which I found in different versions according to the number of items to be uncovered and remembered: the slight difference between these same games and certainly the many others to be found in the Web can be exploited by the teacher by giving a structure of increasing difficulty to the exertion of memory on the part of the child, adding even the use of a timer counting the seconds he has to match all the cards. The basic procedure of finding two identical items could be further integrated by the teacher in pronouncing the English words for the images of the game and ask the child to repeat them.
The simplest one has eight boxes to be opened and the content matched, and can be found at www.bbc.co.uk/cbeebies/funandgames/andypandy_snap.shtml; the second and the third ones have respectively ten magic boxes, at www.bbc.co.uk/cbeebies/funandgames/snap.shtml, or ten images to be matched, at www.bbc.co.uk/cbeebies/funandgames/banb_snap.shtml, but there are certainly other more complex or simpler versions where the items to be matched are more or less numerous according to the capability of the child.
In order to address the difficulty trisomic children experience when discriminating the sound and the letters of a word, the games of letter matching can turn out to be really successful, in that through a quick and simple task of inserting the missing letter in a word, the child has the opportunity of focusing his attention on the single letters and discriminating the different sounds, with the help of pictures representing the meaning of the words he has to complete: http://funschool.kaboose.com/fun-blaster/games/game_whats_hidden.html.
According to the level of disability of the child, a constant repetition of the word or even the use of a flash card with the whole name written can be adjunctive strategies to help the child have clear in mind the "aspect" of the word and thus insert the right letter in the blank space.
Catching and isolating a sound can be easier if applied to the initial letter of words: the game "Begins with" at http://funschool.kaboose.com/fun-blaster/games/game_begins_with__.html requires that images of several animals in a farm must be gathered according to their initial letter; three consonants are in fact written on the top of the page with as many buttons as the images starting with that letter are present in the game. If the animal chosen by the child starts with one of the letter proposed, one of the buttons changes colour and the animal gets its name.
As confirmed by the parents of trisomic children, another weak point in their speech production is the right association between a word and the object it refers to. Learning the same word in a foreign language functions thus as a further reinforcement of the association: before having it clear in English, in fact, the child has to be confident of a word's meaning in his mother tongue first.
A series of enjoyable games with this purpose are available in another rich web site for young English children, www.thekidzpage.com, where several names are displayed in order to be matched with the corresponding image. This can be done with either words or numbers:
For a slightly higher level there is a game where an animal or an object has to be matched with a rhyming word, so the child must already know the name of the object he has to match, or it can be possibly suggested by the teacher. This game has the additional purpose to help the child recognise similar sounds at the end of the words, and a constant work insisting on the similarity of sound but difference in the meaning would presumably succeed in preventing the child from being confused by two similar words.
The game is called "Rhyme Time" and is available at http://funschool.kaboose.com/fun-blaster/games/game_rhyme_time.html.
The game proposed at www.bbc.co.uk/cbeebies/funandgames/flash/bits_and_bobs/bits_and_bobs.shtml concerns the association between an object and its function. The first step for the child is to recognise the object itself – it is in fact partially hidden – and then to choose between three options of its possible use. It is all based on visual input, but the assistance of the teacher would verbally translate the images and their connection.
With a similar purpose another game allows the child to reason upon the nature of the objects as well as refreshing their pronunciation: "Float or sink" is a game where different items are presented in succession: the child has to choose whether they float or sink in the water and then move the object inside a basin, where he can see if his answer has been correct or not. As well as inducing the child to think about the double chance, I find this exercise as a useful way of acquiring or reinforcing simple and short words, not to mention the constant repetition of the two verbs "to float" and "to sink": www.bbc.co.uk/cbeebies/funandgames/fbalab_floatsink.shtml
A good solution for augmenting the knowledge of English numbers is available in several short games where associations can be made between a written number and the corresponding quantity of items, like in "Fishing for Numbers", at http://funschool.kaboose.com/preschool/games/game_fishing_for_numbers.html, where by drawing a line connecting fish to numbers, the child is induced to learn either the quantity they refer to or their pronunciation in English.
Finally, songs are admittedly the most enjoyable activity a child with Down syndrome can experience during a lesson or even at home, as many of the parents questioned have referred. The web site of www.bbc.co.uk/cbeebies/, with the option "Sing a song" offers several short songs the children can follow in a text where the words changes colour as long as they are sang, like a karaoke, so that as well as the text in English, the child can more attentively feel the rhythm of the music: www.bbc.co.uk/cbeebies/singasong.
Besides the amusement deriving from games, small activities and exercises such as these, I would personally highlight the importance of the interaction these programs necessarily provide. For all the games and exercises there is the possibility of checking whether the choice made by the child is correct: particular sounds or changing colours informs the player if he has to try again or if he is allowed to go on. Having a task to complete without any feed back would be on the contrary the same as studying on a text book, and the innovative aspect of being an active participant of the task would soon be lost.
Subsequently, if the level of disability is low and/or the grade of the class higher, that is the fourth of fifth year of Scuola Elementare, the child can even be questioned by the computer about the content of tales or books, such as Harry Potter or other stories whose plots should be available online and worked at before playing. "Uncover the Mystery of Charlie Bone" is one of these: a question is made about events and characters of the story and three choices are given; once the child had clicked on the one he thinks right, he has the feed back on the part of the computer. Though the questions are simple and short, the level here is clearly higher, but nonetheless the game attracts the attention also for the precise, nice illustrations and writings: this game is available at www.scholastic.com/kids/home_flash.asp.
When not using it for games and exercises, The Web is undoubtedly a great opportunity to allow the child access to sites representative of the foreign community he is studying, or else a huge source of information, news and pictures of the child's favourites cartoons or television's characters (I am thinking for example of the web site of the Walt Disney productions and the considerable quantity of images, sounds and English names it would offer to the child I met in my third visit who was so fond of them).
Finally the possibility of using the electronic mail to exchange short mails with foreign peers where the pupil introduces himself and asks the most common questions is certainly a means to apply the English language in a real context and a valid reason to understand the meaning of the words he would read and write in response. The use of the keyboard moreover would certainly stimulate the discrimination of the words' components and their vocalisation while writing them on the keys, not to mention then the visual support provided by the computer and the possibility it offers to fix the images, to save them and go back to them whenever needed.
Even though in the three of the classes I went to the music was taken for granted as a good means to make the lesson enjoyable and to facilitate the memorising of words and short texts, there are several reasons why music should be even more exploited when teaching a trisomic child a foreign language. Besides the aspects in common with the typically developing children, those with Down syndrome can benefit from songs and music at a more significant level. As described by Mrs. Judy Barker,66 a music teacher and mother to a trisomic girl, together with a constant stimulus to their imagination, songs contribute to the reinforcement of words and simple grammatical structures through repetition: without even realising they are repeating the same words over and over again, they do that in an enjoyable way and practise at the same time mouth articulation and vocalisation, which is a weak point depending on the Syndrome.
Not only that, if properly described before listening to it, the text of a song can stimulate their auditory discrimination and the phonological awareness which seems to be so difficult for them; even the other well-known deficit in trisomic children – memory – has a good reinforcement if applied to songs or nursery rhymes the child gets used to. As brilliantly noticed by the author of the article in fact, while it is absolutely possible to recall complete songs even quite long, almost nobody can do the same with the texts of stories.
The didactic power of music on the other hand was immediately evident in my visits where the three children were enthusiastic with listening to the tape and showed to at least understand and recognise a rhythm they were presumably used to. The fact that I actually did not hear them repeating and singing the song is a clear proof that something more can be done to achieve this important objective: if the child is "passively" induced to listen to a song, whose text and sense are not explained to him, he will only enjoy the rhythm, the melody, and possibly some mechanically repeated gestures. That is why I strongly insist on the use of signs and flash cards to facilitate the comprehension of songs or nursery rhymes even with few images to represent the key words and key passages.
A good hint offered by this mother concerns also an important aspect that too often is not exploited in a class: the potential of creativity that these children can feel to express or gain with the aid of an adult or with the confrontation within the group of mates. Making music in fact involves attention, collaboration and self expression: in my opinion a good and adequate starting point could be to stimulate the child to initially substitute the words according to his taste and choice, and progressively making him form a short text using the same pattern of rhythm. In this way he is induced to construct a simple acceptable progression of words and events similar to a short story, fixing the sequence of facts, actions and ideas, not to mention the final satisfaction in singing and making the other mates sing a song composed by him. Activities such as compositions of texts, either with or without music, as well as attributing to the child the role of the compositor, allow his creativity and initiative to be expressed without being judged or mocked but rather helped to fix the words and structures in order to enhance the work.
An increased use of newspapers, comics and the making of paper boards is another suggestion I advance to enlarge the range of activities based on the visual input; particularly, images taken from newspapers are more linked with the concept of authenticity which in my opinion should never be neglected in teaching a foreign language, especially English which is present in numerous contexts at the child's reach, such as music, cartoons, advertising and music bands. The importance of the reality of the items and linguistic inputs presented to the child will be discussed in the next paragraph; in the meantime an important mention is to be made to the value of comics' stories and characters, exploitable for the great affection children often show towards them.
Once the teacher has identified the character most preferred by the child, she could choose it as a companion all through the scholastic year and in the representations of all the topics and items the child progressively learns. For example, while the child is learning the colours, a good repetition would be creating applicable paper dresses to put on the shape of this character with all the colours that need to be acquired and reminded; moreover the great variety of computer programs should give many options about creating shapes and drawings applicable to the various situations – different weather conditions to learn the four seasons; different scenarios to represent city or country elements; presents, Christmas trees, Easter eggs to teach the most famous celebrations; various environments to give a context to the new words the child is learning, etc. – where the shape of the cartoon character is applied and its name used to introduce the activity (e.g., "Mickey Mouse goes to school"; "Mickey Mouse celebrates Christmas", "Mickey Mouse's holiday at the seaside") where new vocabulary as well as non linguistic input could be easily learnt.
All the means, suggestions and concrete methods proposed so far would be completely arid and useless if at their base there wasn't a precise attitude on the part of the teacher towards either the way to teach the subject she is teaching or towards the child whose ability, conditions, deficits, self-esteem and self-expression should be at the core of the program.
What I would like to highlight and propose in this sense would not affect the development of the program itself, nor would it interfere with the other mates' learning or with the course of the study prepared for them, which conversely seems so often to influence the teaching to disabled children. On the contrary, the devices that I would like to highlight and promote are clearly applicable to the rest of the class as well, as they refer to an attitude that is expected to be positive and open-minded, and thus on behalf of all the students.
Teaching children with Down syndrome a second/foreign language is thus clearly possible.
The small amount of information existing on this topic is a symptom of the great work still to do to deepen this knowledge and its application, either from a theoretical point of view or by finding a practical methodology that goes straight to the point and satisfies the number and variety the child's needs depending on the Syndrome.
My proposal, apart from the questionnaires filled in by the families, hasn't had a practical application at school yet, thus its effectiveness is at the moment only presumed on the base of the positive responses the parents report about the use of signs to teach and practise the mother tongue and the second language in situations of bilingualism. My work has been a research, and for this reason I am perfectly aware that once applied it could not have the same success experimented by the families: nonetheless during the last days of my study I received a mail from a member of the Signalong group who referred to me about the success of the greater success thanks to the use of signs in the vocabulary acquisition for children learning French in a school in Kent by comparison with a class of peers who were learning the same foreign language without the support of signs.
There is an aspect anyway I feel most in need of a deeper change before adopting any intervention, that is the attitude the teaching personnel often have towards these children. Though in contact with a small minority of the teachers working with trisomic children, I guess I had a sample of the various behaviours and dispositions a teaching adult can have when faced with disability. Thus I saw the strength of Support teachers who lived their job as a mission, a great responsibility and a stimulus to improve the method and approach, whose effect on me was a sense of passion and positive, attentive disposition certainly bound to open the way to an effective integration of the child. But I also saw good workers who felt too much the need to be in time with the program of the class, who preferred to follow the tendency to precede and substitute the child instead of making him think and realise the way to solve a task, or finally a scholastic system that – apparently on behalf of the child – chose for him more useful subjects or activities instead of an "incomprehensible" foreign language.
I do feel that the starting point is to give the Down syndrome children's capabilities their right value and abandon the sense of limit they are expected to stay underneath; a delay does not mean the impossibility of reaching an aim, it just requires to walk more slowly and more attentively. A proper method is the natural consequence of letting these children and their special needs occupy a central position: with this premise not only can the teaching of a foreign language find concrete benefits, but also all the other subjects that are so important for their instruction, realisation and autonomy.
The process of integration, successfully started with the elimination of the concept of sub-normality, in this way can hopefully go on.
1 Though quite shocking, this is the situation I am referred to by several families in England who discovered their children had Mosaic Down syndrome after suspecting that "something was not going in the right way" at school or simply by observing a slight delay in their child's behaviour, and decided to make them undergo proper exams. The most surprising case is that of a mother who discovered her daughter had MDS 12 years after her birth. The diagnostic system for congenital chromosomal syndromes, such as Down syndrome, relies upon a test on amniotic liquid during pregnancy which is not compulsory and often refused as too much invasive. This is why if the facial traits do not create any suspect, it is possible that the child remains undiagnosed.
2 Formica, 2000
3 Pfanner, 2003, in Rondal, 1999.
4 Cardona, 2001
5 Neath, 1998, in Cardona, 2001.
6 Hebb, 1949, in Cardona, 2001
7 Niero, D., 2003
8 For this purpose the most commonly used system of memory capacity is digit or word span: the children are presented with a list of digits or words in random order at the rate of one per second; after having heard or seen them, they are expected to repeat them in the same order, and their digit or word span is the number of units they are able to recall. A typically developing three-year-old child should have a span of 2 or 3 digits, and a teenager a span of 7 or 8 by fifteen years (Buckley, Byrne, 1994), while the span of a teenager with Down syndrome is only 3.
9 Baddeley and Hitch, 1974, in Jarrold, Baddeley, Phillips, 1999. Working memory is another name for short-term memory.
10 Jarrold, Baddeley, Phillips, 1999
11 Hulme and Mackenzie, 1992, in Jarrold, Baddeley, Phillips, 1999
12 Gathercole, Baddeley, 1990, in Jarrold, Baddeley, Phillips, 1999
13 Rondal, Ling, Perera, Nadel, 1999.
14 Buckley, Byrne, 1994
15 Rondal, 1997.
16 Ignoring that syndromes and pathologies normally get their name after their discoverer, a famous photograph for an important dress mark, after having chosen several children with Down syndrome for an advertising catalogue, expressed his amazement and disapproval about the misleading label of "bambini sotto" (down) given to these children, whom he had found on the contrary always smiling, inclined to be positive and capable to transmit their joy.
This gaffe published in a famous newspaper, signed by a journalist who is on her turn an expert of English language, has been taken as a clear example of how easy is to hurt the sensibility of these people and their families who never stop fighting to overcome the concept and label of "sub-normality", even when it is the result of the sensational misunderstanding of a name.
17 Sagramola, 1997
19 Federazione Associazione di Docenti per l'Integrazione Scolastica.
20 Ianes, 1997.
22 Miller, Abudarham, 1984
23 Cummins, Swain, 1986
27 Miller, 1984, p.183
28 Buckley, www.down-syndrome.net last visit 23.07
29 As I am referred to by a father of a girl with Down syndrome, there is a rather funny example of confusion provoked by this method of language separation, though not regarding his daughter: one child whose mother spoke in French and her father in English was confused by a man talking to her in French; she said that she had thought that only women spoke French and men spoke English.
30 Cummins, Swain, 1986.
31 www.under5s.co.uk/signs.htm last visit 05.07.04
32 Background to the Makaton Vocabulary, in www.makaton.org/research/walker78a.htm last visit 12.07.04. From the initial syllables of the tree names the word Makaton has its origin: Margaret, Kathy, Tony
33 The Makaton Vocabulary, Ibidem.
34 The Makaton Vocabulary: uses and effectiveness, ibid.
36 The Makaton Vocabulary, ibid.
37 Design features of the Makaton Stage Model, ibid.
38 Grove, 1980.
39 http://www.makaton.org/about/ss_what.htm last visit 03.07.04
40 Extent of use, in www.makaton.org/research/walker78a.htm
41 Crews, G., Foreman P., 1999
42 Barker, 1999; Le Prevost, 1996; Foreman, Crews, 2001, in Extent of use, in www.makaton.org/research/walker78a.htm
46 Powell, 1999.
47 http://www.signalong.org.uk/wa/ last visit 29.06.04
51 www.wadeaf.org.au/ last visit 11.07.04
52 www.deaf.co.nz/ last visit 13.07.04
53 www.pgss.org/manual/IntroPaget.html last visit 03.07.04
54 http://www.ssovweb.com/compic/ last visit 28.06.04
55 www.inclusive.co.uk/infosite/symsyst.shtml last visit 20.06.04
56 www.symbols.net/blissymbolics/dictionary.html last visit 20.06.04
57 Dr. P. Pam and Dr. J. Ball http://hanen.velocet.ca/questions_parents_dispraxia.shtml last visit 08.07.04
58 Birkett, 1984, paragraph 1.4.2, in www.makaton.org/research/birkett.pdf last visit 10.07.04
59 Miniclub, edited by LANG
60 Hello English, edited by Giunti Scuola
61 When I asked her to read the number of the pages, she often inverted them, and instead of reading – in Italian – 23, she read 32.
62 The system is the so called "Alfabeto muto", and has a sign for each letter of the alphabet. As far as I can remember from my childhood, there could be few personal variations to the signs, but as a whole, though quite a slow system indeed, it was largely used among kids to such a point that I remember it all still now.
63 Sunny Days, edited by Lang.
64 www.makaton.org/about/adapting.htm, last visit 14.08.04
65 As referred in the article by L. Cupples and T. Iacono, The efficacy of the "Whole Word" versus "analytic" reading instruction for children with Down syndrome, an intervention study comparing trisomic children learning a series of 30 words through the Whole Word method and a group of trisomic children using the analytic one, showed that the children trained with the analytic method performed better in following reading instructions though their auditory-verbal memory was poor.
66 Barker, 1999.
67 Scala, Liosi, 2001
68 The Down syndrome Association I came in contact with in Venice for my research every year organises cultural exchanges with a group of foreign Down syndrome children: last summer a group of French boys and girls came to Venice for fifteen days, and then the members of the Venetian Association did the same in France. Having the chance of interacting with foreign peers is an extremely interesting and stimulating motivation for these children to learn some basic sentences and words in a foreign language.
69 Cardona, 2001
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BIRKETT, E., A comparative study of the effects of the Makaton Vocabulary and a language stimulation programme on the communication abilities of mentally handicapped adults, Department of English Language, University of Glasgow, 1984, in www.makaton.org/research/birkett.pdf
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GROVE, N., Current research findings to support the use of sign language with adults and children who have intellectual and communication handicaps, 1980, in www.makaton.org/research/grove80.htm
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KAY-RAINIG BIRD, E., CLEAVE, P., CUPIT, J., RANDALL, GRYZ, A., NOWELL, G., Language mixing in children with Down syndrome, 23rd Annual Symposium on Research in Child Language Disorders/9th Congress International Association for the Study of Child Language, 2002
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