Those who know me would agree that I am a fierce advocate for my adult son, Carl, who has a developmental disability, and others who experience a disability. But along my journey, I have learned that promoting and teaching self-advocacy is a foundational component to helping my son and others live meaningful lives.
What exactly is self-advocacy? Self-Advocacy is speaking up for yourself. It is understanding your strengths and weaknesses, recognizing who can help you, and communicating what you need to succeed to others. It is understanding your disability and how it impacts you and sharing this with others. Self-advocacy involves communicating your desires and goals.
Key elements of self-advocacy include self-awareness (understanding one's needs), support (knowing what help or support will address one’s needs), and communication (communicating one’s needs to others). Remember, communication is not only verbal. It can take other forms, such as assistive technology devices which are effective.
Self-advocacy is similar to self-determination. Self-determination means having the knowledge, skills, and attitudes to steer and direct your own life toward your goals and dreams for the future. It encompasses skills such as talking about yourself, choice and decision making, leading IEP meetings, speaking up, taking responsibility, giving feedback, self-regulation, goal setting, and planning.
Kids who practice self-advocacy generate solutions for challenges in school, at home, and in the community. Sometimes kids will suggest or discover solutions that their parents are not aware of which develops their independence. This creates a sense of ownership over one’s environment, resulting in self-confidence and an increased ability to learn.
Parents can provide experiences at home to complement what should happen at school. Teach children that asking for help is a good thing. When they do, praise them. Provide opportunities for independence at home and in the community, even if it is out of your comfort zone. Carl preferred structure and knowing his schedule. Using a visual schedule accommodation helped Carl anticipate transitions throughout the day. Carl went on regular outings to the Children’s Museum, public library, park visits, and more, and the visual schedule helped. These outings laid a foundation and the expectation that Carl is a member of his community. They also reflected my desire and advocacy for Carl to be included in general education with peers without disabilities.
Parents can talk to children about their strengths and weaknesses. Map these out by using pictures and stories to illustrate. I helped Carl realize that he has a great memory and ability to remember people’s names. One of Carl’s weaknesses was that he didn’t like crowds and busy stores. I still expected Carl to occasionally assist with a shopping errand. I used a “change” card on his visual schedule to help him mentally prepare.
Educational programs also play an important role in developing self-advocacy. Teachers should model a can-do attitude for ALL students. Educators should promote opportunities for students to speak up for themselves, make choices based on their preferences and interests, participate in decisions that affect the quality of their lives, set personal goals, solve problems that act as barriers to achieving goals, and self-regulate or self-manage day-to-day actions.
Providing opportunities for preschool and early elementary school students to make choices is important. Teach kids that they have control of these choices and that most choices have limited options. Give feedback regarding choice outcomes so kids learn the connection between choices and consequences. Encourage problem-solving skills. Have kids think out loud as they address simple problems. Model your own problem-solving processes. Once when I was preparing supper, I realized I didn’t have enough eggs. I modeled “thinking out loud” problem solving in front of Carl, and he accompanied me to a neighbor’s house to borrow two eggs. Carl learned that situations arise and thinking out loud can lead to a solution.
Encourage students to ask for and use accommodations in the educational and home settings. Possible accommodations include sensory breaks, extended testing time, voice recognition software, assistive technology, re-direction, self-regulation tools, visual schedules, and social stories. Carl used tools at home including social stories, a visual schedule, hygiene task charts, token reinforcement system, and other positive incentives. Books by Kari Dunn Buron (The Incredible Five Point Scale and When My Worries Get Too Big) provided research-based visual tools to teach Carl to regulate his anxiety and aggressive behaviors.
Developing self-advocacy skills in young children will set the groundwork for older children to use in Middle and High School and when transitioning into adulthood. I look forward to sharing how older students can demonstrate self-advocacy by leading their IEP meetings, taking classes they are interested in, and pursuing employment opportunities that they choose. In a future post I will discuss how self-advocacy skills empower older children to set the stage for the adult life they desire.
Kristen Larsen currently serves as the Executive Director of the Nebraska Planning Council on Developmental Disabilities. Kristen’s passion for disability advocacy is a result of years of personal experience with her 24 year-old son, Carl, who has autism and an intellectual disability. Serving as Carl’s advocate within the education and the home and community based waiver services system led to her pursuit of a career focused on helping individuals and families who face the obstacles, challenges, and rewards that having a disability may pose.