Academic journal article Exceptional Children

Parent Reading Behaviors and Communication Outcomes in Girls with Rett Syndrome

Academic journal article Exceptional Children

Parent Reading Behaviors and Communication Outcomes in Girls with Rett Syndrome

Article excerpt

Rett syndrome (RS) is a pervasive developmental disability that is found almost exclusively in girls (one out of every 10,000 to 15,000) and is marked by a gradual deterioration of hand use and language loss (American Psychiatric Association, 2000; Trevathan & Naidu, 1988). Some girls may retain a few single words, simple phrases or, even more rarely, sentences; but typically, girls with RS communicate by gestures, vocalizations, and body positioning (Coleman, Brubaker, Hunter, & Smith, 1988). Although first described by Andreas Rett in 1966, RS was not generally recognized as a medical disorder until 1983, when a second article was published (Hagberg, Aicardi, Dias, & Ramos, 1983). Since then, much progress has been made in identifying the genetic causes of RS (Amir et al., 1999; Clayton-Smith, Watson, Ramsden, & Black, 2000; Schwartzman et al., 1999; Sirianni, Naidu, Pereira, Pillotto, & Hoffman, 1998; Villard et al., 2001; Zappella, Meloni, Longo, Hayek, & Renieri, 2001), but little research has been done to cultivate communication and literacy in girls with this condition.

Some researchers suggest that girls with RS rarely communicate beyond a preintentional level where caregivers assign meaning to the girls' behavior, but the children have no expectation or awareness that their caregivers will respond (Woodyatt & Ozanne, 1992, 1993, 1994). If the communication is successful, other researchers report that the dialogue is often inconsistent across tasks and occasions (Sigafoos, Laurie, & Pennell, 1995, 1996). However, recent intervention studies suggest that girls with RS can and may want to communicate at a deeper level. Splinting the nondominant hand, for example, resulted in the girls' purposeful use of their dominant hand to access a switch-activated augmentative communication device (Weiss, 1996). Girls with RS increased their requests for preferred foods using a computer with animated graphics (Van Acker & Grant, 1995) and successfully eyepointed to a named object when three picture communication symbols (PCS) were presented on a computer screen (Hetzroni, Rubin, & Konkol, 2002).

In this study, 4 girls with RS and their mothers engaged in storybook readings, and we measured the level of interaction and communication that occurred between them. It is well documented that reading to children without identified disabilities can cultivate their language and literacy skills (e.g., Neuman, 1996; Strickland & Morrow, 1989; Teale & Sulzby, 1986), and we hypothesized that reading to children with RS would be no different. Previous studies have shown that through storybook readings, parents of children with significant disabilities were able to increase their child's spontaneous language use (Bellon, Ogletree, & Harn, 2000), verbal- and picture-communication symbol use (Dexter, 1998), and overall communicative performance (Crowe, Norris, & Hoffman, 2000). Successful elements in these interactions have included parental acknowledgment of a child's competence (Koppenhaver, Evans, & Yoder, 1991), opportunities for the child to use multiple forms of communication (Coleman, 1991), and repeated readings of a familiar text (Bedrosian, Roberts, Neynaber, & Raap, 1995). Use of augmentative and alternative communication (AAC) devices can also improve literacy and verbal skills for children with speech and language disabilities, particularly those with autism (Charlop-Christy, Carpenter, Le, LeBlanc, & Keller, 2002; Light, Roberts, DiMarco, & Greiner, 1998; Tjus, Heimann, & Nelson, 2001).

The present study was nested in a larger investigation on storybook reading at home as a context for early communication and emergent literacy intervention in girls with RS. We have previously reported that motivated parents did not require expensive technologies or lengthy training in order to enhance their child's communication and participation in storybook readings (Koppenhaver, Erickson, Harris et al. …

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