Children with Profound, Intellectual and Multiple Disabilities
Nowadays, educational settings are attended by children with different abilities, needs and cultural experiences, as is the case of the ones with Profound Intellectual and Multiple Disabilities (PIMD). The exceptionality of the characteristics and needs of these children raises many challenges to their development and learning (Amaral, 2011; Nunes, 2008), mainly the development of communication skills. These children require intense and continuous support to actively participate in learning activities (Vlaskamp & Van der Putten, 2009) and are heavily “dependent on others in all aspects of their daily life” (Nieuwenhuijse, Willems, van Goudoever, & Olsman, 2020, p.1). These needs stems from the existence of profound intellectual disabilities, combined with neuromotor restrictions or sensory impairments, and sometimes the occurrence of serious health problems (e.g. Axelsson, 2014; Grace, 2015; Pawlyn & Carnaby, 2009; Nieuwenhuijse et al., 2020; Nunes, 2008). As a result of these circumstances, most of them seem to have limited understanding of verbal language and difficulties in symbolic interaction with objects (Nakken & Vlaskamp, 2007). Indeed, their communication is often achieved through non-verbal forms, such as: movements, vocalizations, facial expressions, eye contact, body postures, muscle tension, body language, etc. (Maes, Lambrechts, Hostyn & Petry, 2007). This set of characteristics reduces or blocks the access to the symbols as well to the opportunities for interaction with the social and physical environment. At the same time, the lack of efficient means of communication makes their teaching and learning a more challenging process (Amaral, 2011; Nunes, 2008; Vlaskamp & Van der Putten, 2009). Bearing in mind these difficulties “Everything that these children learn has to be taught, placing on the adults who interact with them (families and professionals) the responsibility of deciding what to teach them” (Nunes & Amaral, 2008, p.5).
Therefore, it should be noted that disabilities are not inherent to the person nor his/her medical condition but arises as the result of interactions between the person and the characteristics of the socio-economic environment in which he/she lives. In fact, the child development and functionality are a result of the interaction between the health conditions and “the external influences at multiple levels of the child’s ecology” (Axelsson, 2014, p. 17). The combination and severity of their disabilities, the age at which their condition emerges and the experiences they are exposed to are important issues to consider in order to understand who these children are (Nunes, 2008). Consequently, the skills that children with PIMD develop and the difficulties they may face might be very different. In fact, the literature (i.e. Axelsson, 2014; Nakken & Vlaskamp, 2007, Nunes, 2008) described these children as belonging to a heterogeneous group what concerns to the cause(s) of disabilities “as well as in terms of their functional and behavioral range” (Axelsson, 2014, p.17).
Regardless of the differences displayed by children with PIMD, their teaching and learning process require environments that: (i) enable the access to meaningful information, (ii) stimulate their development, with a special focus on development communication skills, and (iii) provide opportunities for social and physical interaction with the world around. Educational practices must address their uniqueness and ensure their right to education, because “all children matter”.
Considering the characteristics and specific features of children with PIMD, the authors wondered whether the development of literacy skills was realistic for them and how could guarantee that they have opportunities to engage in literacy-related experiences and to develop meaningful literacy skills.