Children with Down Syndrome and the Foreign Language: A Concrete Possibility?

Valentina Tommasi Università Cà Foscari di Venezia Facoltà di Lingue e Letterature Straniere Tesi di Laurea

Reproduced with the permission of the author.

Introduction

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.

1.1. Down syndrome as the result of a chromosomal variation

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:

• Free or Primary Down syndrome, happens when one parent carries in his/her reproductive cell two chromosomes 21 instead of one after a non-disjunction of this chromosome during the meiosis. Consequently, the new zygote will have three chromosomes 21, two from one parent and one from the other. This is the most common situation (92%) and though unpredictable, the risk of its presence increases greatly from the 36^th year of the mother's age.
• Down syndrome Translocation or Secondary, based on a transfer of the 21 on other chromosomes. A certain number of people carry in their genetic structure a translocation without knowing it, for the very reason that their biological, psychical and physical sets are perfectly normal (the number of total chromosomes remains 46). Nonetheless during the meiosis germinal cells with two chromosomes 21 can be generated, and thus the risk of creating a trisomy as well. This is a less frequent case (4.8 %
• Mosaic Down syndrome, which is found in an even lower percentage, (about 3%) as only some of the cells have an extra chromosome 21, with the consequence that, according to which organs and tissues carry trisomic cells and considering that the rest of them develop and work properly, the pathology may appear less severely. For the same reason Mosaic Down syndrome shows much less evident typical facial traits, to such a pointthat often parents do not even realise their children are affected until several years after their birth.¹
• Partial Trisomy, where the chromosomal part in excess is only a fraction of chromosome 21, but is enough to generate the typical alterations of Down syndrome. Its recurrence is only 0.2% and is the result of very particular familiar situations.

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

1.1.2 Consequences of the Trisomy: cognitive aspects

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.

1.2. Short–term memory

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.

1.2.1 Neuronal connections and learning potentiality

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.

1.2.2. Explanations for cognitive delay in Down syndrome

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.

1.2.3. Hearing impairment and possible solutions

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.

1.3. A historical outline of scholastic inclusion

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.

1.3.1. The support Teacher

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.

1.3.2. Legge Quadro 104/1992

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).

1.3.3. Certification of the student with Special Needs

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.

• Functional Diagnosis: it describes the functional condition of the student, either physically or psychically. It must indicate the gravity of the pathology in terms of quantity, that is its level, and quality that is the specificity of the handicap, and finally the potential of recovery in short, medium, long term.
  Its importance lies in the description of not only the kind of deficit, but also the student's potential areas of development, and for this reason the school is expected to require and practice all the initiatives that aim at the student's integration and valorisation, asking for the assistance of a support teacher, for economical sources and material, and if needed for special transportation.
  It is updated with the passage in a new school grade and delivered by the Head teacher to those of the following years. Its compilation, made by the Gruppo Operativo in a specific model, is fundamental for the outline of the Individual Educational Plan.
• Dynamic Functional Profile: it is a collegial act that has to be compiled at the beginning of the very first year of school and updated at the end of every scholastic cycle. Equally important for the definition of the individual program, this document is prepared and discussed by the whole Consiglio di Classe together with the operators of the local Health Service and the parents, and it defines the situation from which the student starts, and the objectives to be gained. It collects all the knowledge and observations of the members of the Gruppo di Lavoro Handicap concerning problems and obstacles in the performances of the student but also his or her potentialities in learning, socialisation and autonomy development.
• Individualised Educational Plan: it is the result of the conjunctions between the previous considerations about the student's capabilities and the potentiality of the school as far as activities and interventions are concerned.
  Though the name refers to an individualised program for the disabled student, most of times this document is a variation of the curricular program for the whole class with which has often several converging points. For this reason, as well as to the Gruppo di Lavoro Handicap, great importance is necessarily given to the roles of the teachers and support teachers, together with the parents who are the best resource for suggestions and help.
  The educational Plan contains the definition of:
  • objectives of education and rehabilitation to be gained within one or more year;
  • methods, materials and supports for organising the interventions;
  • the time span between interventions;
  • methods for testing and evaluation;
  • integration forms between scholastic and extra scholastic environment.
Though its updating recurs generally at the end of every scholastic year, for the areas it refers to – either in or outside school – the Educational Plan should be revised and if necessary modified more often and in itinere, in order to maintain constant attention and coherence between the services offered and the capability of reception on the part of the student.

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.

1.3.4. Criticism towards the text of the Functional Diagnosis

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.

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.

2.1 Bilingualism and cognitive growth

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).

2.2 The opinion on bilingualism by experts in Down syndrome: suspicious attitudes

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.

2.2.1 Positive attitudes

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.

2.3 Families' experience of bilingualism

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.

2.3.1 Languages spoken and reasons for bilingualism

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.

2.3.2 Motivations and fears

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.

2.3.3 Creating a situation of bilingualism

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.

2.3.4 Response of the child to bilingualism

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.

2.3.5 Benefits deriving from bilingualism in trisomic children

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.

OBSERVATIONS

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.

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.

3.1. Makaton

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:

• vocabulary setting: it is formed by two distinct sets of words which have been refined during the years and are structured in eight sequential stages of increasing complexity and communication priority. There is a ninth additional open stage where extra words and concepts are included as their need is felt in specific situations and their application is at the discretion of the teacher. Recently, a new system of symbols – Makaton Symbols – has been introduced. It has been matched to all the stages of the Vocabulary in cases where signs and speech are still not enough.³⁴
• modality of use: Makaton signs can be used either with speech – which would be its main and more expected use – or with written words, or even on their own.
• wider range of beneficiaries: if BSL is the official language of deaf people, for the very reason of being a support for communication and not a language in itself, Makaton can be applied to a community of disabled people ranging from mentally handicapped deaf children to autistic or stammering children and adults who need to relieve tension and frustration by expressing themselves through signs. The chance of being used with hearing disabled people makes it a popular communication support for the Down syndrome community