You’ve Got This – AAC and the Young Child with Angelman Syndrome

Quick Overview

Mary Louise Bertram, a member of the Angelman community, discusses the importance of communication in children with Angelman Syndrome. She encourages parents to view their child’s condition as a list of “not yets” rather than “can’ts”. Bertram highlights the importance of language, literacy, and Augmentative and Alternative Communication (AAC), and the need to understand and address motor planning issues, dyspraxia, and sensory processing challenges. She emphasises the role of perception, expectation, and opportunity in driving achievement and communication. Bertram also discusses the importance of teaching AAC, aiming for communication autonomy, promoting early literacy, and implementing best practices for support.

Introduction

In this talk, Mary Louise Bertram, a dedicated member of the Angelman community for 10 years, emphasizes the importance of communication in children with Angelman Syndrome. She encourages parents to be honest about their child’s challenges and gifts, reframing Angelman Syndrome as a list of “not yets” instead of “can’ts”. The goal is to provide children with Angelman Syndrome with opportunities to learn and develop.

Supporting Communication

Bertram highlights the potential of children with Angelman Syndrome and emphasizes the importance of supporting them to understand their sensory needs and regulate themselves. Language, literacy, and Augmentative and Alternative Communication (AAC) are vital and should be started early. She encourages parents to focus on support for a full life rather than a life full of support.

Characteristics of Children with Angelman Syndrome

Bertram describes the characteristics of children with Angelman Syndrome, such as curiosity, tenacity, and problem-solving skills. She emphasizes that these children are already communicators and have their own natural language. She introduces the concept of a natural language inventory to document and share a child’s natural language.

Challenges in Communication

Motor planning issues, dyspraxia, and sensory processing challenges are common in children with Angelman Syndrome. Bertram discusses the importance of understanding and addressing these challenges in communication interventions. She also highlights the impact of seizure activity and sleep issues on communication and encourages parents to prioritize addressing these issues. Visual and auditory processing issues can also affect communication, and Bertram suggests strategies for supporting children with these challenges.

Driving Achievement and Communication

Bertram emphasizes the importance of perception, expectation, and opportunity in driving achievement and communication in children with Angelman Syndrome. Dynamic assessment is important for ongoing evaluation and adjustment of communication systems. Verbal referencing is a strategy used to help children with Angelman Syndrome understand the meaning behind their actions.

Teaching AAC

The use of communication systems, such as AAC, can help children with Angelman Syndrome learn to communicate. Bertram emphasizes the importance of providing children with Angelman Syndrome with time and familiarity when assessing their communication needs. A comprehensive AAC system that allows for modeling of all functions of language is necessary. Teaching AAC is about teaching connection and relationship, not just compliance. Language development for children with Angelman Syndrome should be approached in a similar way to typically developing children, with a focus on providing receptive input before expecting expressive output. Aided language input, modeling, and creating an immersive environment are important strategies for teaching AAC to children with Angelman Syndrome.

Communication Autonomy

Communication autonomy is a goal for children with Angelman Syndrome, and it can be supported through the development of motor planning skills, independent mobility, and sensory processing. Children with Angelman Syndrome may have difficulty with visually attending to symbols, but strategies such as partner-assisted scanning can help them access AAC. Seizure activity can impact a child’s ability to attend to symbolic language, but exposure to symbols in meaningful contexts can still be beneficial.

Early Literacy

Early literacy routines, such as shared reading and exploring books, are important for children with Angelman Syndrome.

Best Practice and Support

Best practice for children with Angelman Syndrome involves collaborative teams working with families to support whole child development. Access to speech therapists skilled in AAC is important. Implementation of a comprehensive AAC system that enables parents to model all functions of language is best practice. Ongoing training and support for families and professionals is important for successful implementation of AAC systems for children with Angelman Syndrome.