When a child has an intellectual or developmental disability (IDD), parents are typically their first advocates, working with schools to get the services their kids need to thrive. A child with IDD may have difficulty learning primary skills such as reading, writing, or math. They often need extra support, explicit teaching of skills, and school accommodations to succeed.
But because learning disabilities are often invisible, and parents aren’t always around to speak up for them, it’s especially important that kids with IDD learn how to advocate for themselves to the best of their ability. Students who struggle with IDD are often just as capable of learning as other kids, but can be mistaken for lazy or defiant when they struggle to do things that come easily to other students. Being outspoken can help prevent or clear up any confusion.
What is Self-Advocacy?
Self-advocacy is the ability to speak up for yourself to get what you need to succeed. In the context of kids with IDD, it means being able to explain their disability (i.e., how they learn differently than other kids and what their strengths and weaknesses as learners are). It also means being able to assert themselves in an appropriate way, usually to adults, about what supports they need and why.
Self-advocacy is a skill that’s part of self-determination, which is the idea that you are in charge and in control of your own life.
This can look like a student reminding a teacher that, because they have dyslexia, they are entitled to extra time on a test or asking if they can type rather than take notes by hand, since dysgraphia makes that difficult for them. A student with dyscalculia, a math learning disability, might ask to use a calculator. It can also mean being comfortable asking for help more generally or starting a conversation about their struggles. The idea is to empower students to feel confident, rather than ashamed, about what they need.
It Starts with Self-Knowledge
Before you can advocate for yourself, you need to have a clear understanding of what you are advocating for. Some parents find it uncomfortable to tell their child about their diagnosis, but hiding the information doesn’t shield them. They know they are struggling and having a hard time doing things that other kids find easy. It’s very important for them to understand why that is. When kids realize that everyone has strengths and challenges, it can be both a relief and a confidence boost.
Even early elementary students are able to have this conversation, and it should include what they’re good at, as well as what they’re struggling with.
Some kids may need more help than others understanding their learning profile. Learning about how you learn, what experts call metacognition, is an important part of the process. It’s all key to developing a growth mindset, which is based on the understanding that intelligence and ability are not fixed but rather based on effort, experience, and a willingness to learn from mistakes.
Understanding Their Rights
Once kids know what they need, it’s time to give them a sense of what they are entitled to. Kids in fifth grade and up are especially ready for these conversations because they are so justice-oriented and interested in what is fair. But even younger kids can and should have a basic understanding of what tools are available.
Emphasize that it’s not cheating to get the support you need. Accommodations are a legal right; students with disabilities are entitled to a free, appropriate public education (FAPE) under the Individuals with Disabilities Education Act (IDEA).
To help understand this concept, consider wearing glasses. Glasses are an accommodation that help people who have vision challenges level the playing field. No one would say that wearing glasses gives someone an unfair advantage. It’s the same thing for kids with learning challenges.
All kids will benefit from a general understanding of what tools are at their disposal and how they can use them. Tools might include access to a learning center, one-on-one interventions, untimed testing, audiobooks, the ability to record lectures, noise-canceling headphones, and more. Kids can learn about what specific resources are available to them and where they can go for help. If they have an IEP or 504 plan, let them know what accommodations are outlined and what their rights as a student are.
Communicating Their Needs
Learning how to communicate needs and rights is where self-advocacy gets put into practice. Students need to know who to go to and how to effectively and respectfully get their point across.
Kids may feel shame or stigma when it comes to calling attention to their learning differences, or may just be nervous about speaking up to adults. Scripts, practice, and role-playing in a safe space can be helpful.
Self-advocacy can take place outside the classroom as well, so it’s worth covering a range of scenarios, from summer camp to social situations, in which kids may need to speak up for themselves. Often it can be as simple as saying, “Hey, I have a learning disability that makes this tricky for me.” They don’t need to divulge more details than are necessary but can let friends or counselors know what might make things easier for them, whether that’s making plans by text rather than phone calls or learning the rules to a new game ahead of time.
Family Support
While a lot of self-advocacy takes place at school, it starts at home. Parents and caretakers can model what it looks like, both for themselves and their children. And they can reinforce the message that it’s important to stick up for yourself to access the tools you need to succeed. This can look like a parent telling a story about requesting an accommodation for themselves at work, commenting on a relevant storyline in a book or movie, or standing up for their kid at school and fighting for what they need.
Rinse and Repeat
Self-advocacy isn’t a skill that is taught once and that’s it. It takes time, so some kids get there and then they hit a new developmental stage in their teens and we do it all again. Sometimes the teaching and work happens many times as the kid grows and changes.
Like so many things, it’s a process, and what self-advocacy looks like for a six-year-old will be different for a tween, teen, or adult. For little kids, learning when to verbalize that something is hard and knowing when to ask for help can be enough. Older kids, meanwhile, can play a bigger role in determining and expressing what they need. When kids feel understood, they’re more likely to feel encouraged to succeed.
Leadership Skills
Besides learning to stick up for themselves, once kids get comfortable with self-advocacy, it often leads to advocacy more broadly. Kids who advocate turn into leaders. They look around and stand up for others, they share their knowledge of the tools, and they want to talk to school officials about making things better.
When kids understand that everyone is different and each student has their own individual challenges and needs, it can be empowering on both a personal and societal level. It has the potential to create more inclusive spaces in which kids stand up for, rather than bully, one another.
At The Arc of Wichita County, we serve as advocates for all individuals with intellectual and developmental disabilities and their families by providing programs and services that enable adults and children.
The People First Self-Advocacy group is designed for adults with IDD to learn the skills to advocate for themselves and other people with IDD. If you are interested in more information about this program or have any questions regarding advocacy, please contact us at (940) 642-4493.