Starting Over with Communication

Quick Overview

The session “Starting Over with Communication” at the ASF Family Conference focused on overcoming challenges in using AAC (Augmentative and Alternative Communication) systems for individuals with Angelman Syndrome. The speakers, Kelly Meissner, Karen Hoerst, and Cori Stell, encouraged participants to persist despite setbacks, likening the journey to “just keep swimming.” They acknowledged the difficulties of non-verbal communication and the barriers posed by technology, urging families to use AAC systems to discuss topics of interest to their loved ones. The session emphasised the importance of starting small, using AAC at least once a day, and seeking support from the community and resources like the ASF Family Fund. Participants were encouraged to share their experiences and strategies for overcoming obstacles, such as dedicating devices solely for communication or using light tech solutions like core boards. The session concluded with a reminder that imperfect practice is better than striving for perfection, and that starting over is always better than giving up.

The 2024 ASF Family Conference featured an insightful session titled “Starting Over with Communication,” led by Kelly Meissner, Karen Hoerst, and Cori Stell. This session was designed to address the challenges faced by families using Augmentative and Alternative Communication (AAC) systems, particularly for those living with Angelman Syndrome. The session was a blend of empathy, practical advice, and community support, aimed at helping families navigate the complexities of AAC.

Acknowledging the Challenges

The session began with a heartfelt land acknowledgment, recognising the historical struggles of indigenous peoples in Canada, drawing a parallel to the challenges faced by the disabled community. This set the tone for a session that was both sensitive and supportive.

The speakers candidly addressed the difficulties of non-verbal communication, acknowledging that not being able to speak is incredibly challenging. They emphasised that many in the room had likely experienced both successes and setbacks with AAC systems. The session aimed to create a safe space for sharing these experiences and finding ways to move forward.

The Reality of Being Stuck

A significant portion of the session was dedicated to discussing the feeling of being “stuck” with AAC systems. The speakers recognised that families often experience waves of success and periods of stagnation. They encouraged attendees to share their experiences with each other, fostering a sense of community and mutual support.

The speakers highlighted that the technology itself can be a barrier, not the individuals using it. They reassured attendees that getting stuck is not their fault and that everyone in the room understood these challenges.

Strategies for Getting Unstuck

The session offered practical strategies for overcoming obstacles with AAC systems:

1. Focus on Interests: Encourage communication by using the AAC system to talk about things the individual cares about. This could involve modelling likes and dislikes or discussing upcoming activities.

2. Start Small: When overwhelmed, aim to use the AAC system just once a day. This small step can lead to more frequent use and help build confidence.

3. Seek Support: Leverage community resources, such as the ASF’s “Stepping into AAC” programme, to find support and guidance. The speakers emphasised the importance of community and the wealth of resources available.

Embracing Imperfection

The session concluded with an empowering message: imperfect practice is better than striving for perfection. The speakers encouraged attendees to embrace the process, acknowledging that there will be good days and challenging ones. They reminded everyone that starting over is better than giving up and that the effort to communicate is a significant achievement in itself.

A Community of Support

Throughout the session, the speakers emphasised the importance of community. They encouraged attendees to share their struggles and successes, reinforcing that they are not alone in this journey. The session was a reminder that while AAC can be challenging, it is also a powerful tool for connection and expression.

In summary, “Starting Over with Communication” was a session filled with empathy, practical advice, and a strong sense of community. It provided attendees with the tools and encouragement needed to continue their AAC journey, reminding them that they are part of a supportive network of families and professionals.