It is 9:00AM, Siobhan, a 32-year old woman with Cri-du-Chat syndrome (a rare chromosomal disorder caused by a deletion of genetic material on part of chromosome 5), and her caregiver are preparing breakfast. She constructs a sentence on her communication device, “I want broccoli.” Many of us might instinctively react - broccoli? For breakfast? That is not breakfast food! We might even assume she made a mistake, and we most likely would have never thought of offering broccoli as a choice. For Siobhan, this was not a mistake. It is exactly what she wanted: a choice she communicated!

The Power of Communication

Siobhan began learning to communicate using the Picture Exchange Communication System® (PECS®) when she was in preschool. Initially, she exchanged simple pictures to request her favorite items. As she expanded her messages to full sentences and increased her vocabulary, she transitioned to a speech generating device (SGD). Today, as an adult, she still uses both systems—depending on the setting—and does so with confidence. Whether she is swimming in a pool, shopping at the farmers’ market, or preparing a meal at home, she has numerous opportunities to express her wants and needs. Siobhan has also learned to use her device in social situations, such as when walking her dog. When someone asks, “What is your dog’s name?” she responds “My dog’s name is Dabney.” Additionally, she uses pictures when making a grocery list and deciding what to do during the day. By actively participating in setting up her daily schedule, she has a balance of structure and autonomy, empowering her to have ownership in her daily routines.

Choice and Self-Advocacy in Daily Routines

Learning skills in numerous routines provides a foundation to build communication. Siobhan has learned that her communication has power in multiple environments. When Siobhan wants to listen to music, using her SDG, she requests “Hey Siri, I want Wizard of Oz” – and her HomePod plays it. When encountering obstacles or a step she cannot complete within a known routine, instead of just waiting for someone to complete it for her, she self-advocates. For example, Siobhan cannot open the can of her favorite sparkling water, but she can find her caregiver and use her SGD to say, "I want help open water." In the evening, when going for a walk, after she has assistance putting on her jacket, if she wants her jacket zipped, she can ask “I want help zipper” or she can choose to leave it unzipped.

Having these solid communication skills that are universally understood is also crucial to being an active part of the community. At the grocery store, she hands over a Sentence Strip to the person behind the deli counter to request, “I want turkey.” Embedding communication in real-life tasks provides opportunities to teach, reinforce communication and gain independence.

Building Skills with the Pyramid Approach

Recently someone asked how Siobhan learned the skills to communicate and actively participate in her community. They wanted to know, How does her team ensure she participates in her day and not just wait for others to do everything for her?

Just like going on any journey, we develop a plan to decide what we are doing and how we will get there; Siobhan's team has applied this same principle throughout her life. From elementary school to adulthood, her team continues to apply the well-known Pyramid Approach to Education®, a framework that emphasizes individual goals, functional communication, and systematic teaching strategies.

Using this guide, Siobhan’s team focuses on skills that enhance independence and support her communication. By identifying her strengths and interests, the team tailors learning opportunities within routines she enjoys. Expanding upon these interests and incorporating activities she likes into her day forms the foundation for her well-being.

Whether learning to sort laundry, complete physical therapy exercises, prepare a meal, make her bed, show her identification card at the pool, or navigate social interactions, each task is carefully evaluated to determine the best teaching strategy and level of support needed based on her individual needs. Collecting and analyzing data is also important in monitoring her progress, identifying gaps, and determining the next skills to teach.

Having a systematic guide, like the Pyramid Approach, provides direction for thoughtful planning, ensuring generalization of skills and the necessary support that leads to meaningful learning, growth and happiness.

Lifelong Learning & Community

Learning is a continuous journey that never ends. Every new experience is an opportunity to grow and communicate. When life is stimulating, engaging and interesting, we all have more to say. Having a solid, universally understood communication system is essential for all of us — it is a human right. Providing choices, no matter how small, supports autonomy and self-advocacy. Everyone should have the voice and the choice to have broccoli for breakfast.

 

A world where communication is expected and supported is one in which parents of children with severe disabilities can feel at peace. Siobhan is a great example of a person who has persistence, determination, and insistence on being heard, but that she is heard is the result of effective teaching. As long as her communication is supported, she will continue to make her way in the world. — Linda (Siobhan’s mom)

 

 

 

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Written by, Donna Banzhof, MEd, BCBA, IBA, Pyramid Global Partners Clinical Director
© Pyramid Educational Consultants, LLC. 2025