“Wait, why do I have to go to some teacher meeting? Am I in trouble?”
My autistic son started to stim and pace, his fingers rapidly fluttering and the right side of his face scrunching up. He walked out of the kitchen to the dining room, let out a frustrated groan, then marched back in and stood in front of me.
“I don’t know anything! What’s an IEP anyway?” he demanded. “What’s going on?”
And it hit me: I had advocated for my son too well, taking care of every little obstacle both in school and out. He needed to begin advocating for himself—and he didn’t know how.
Self-Advocacy Is a Key Skill
The time to address that knowledge gap is now, so your teen will be ready to operate more independently when they head off to college. “What I see as a professor is a lot of kids who land at college and say, ‘I don’t need this anymore—I’m fine—It’s my mom’s issue, not mine,’” says writing instructor Hildie Block, who has taught at universities in the Washington, D.C., area.
If they’re not comfortable self-advocating, it’s sometimes easier for teens to try to ignore their disabilities. “They don’t let the faculty member know that they need extended time, notes, special seating, or private testing until it’s too late in the semester and they are drowning,” says Block.
Teaching Self-Advocacy to Students with Disabilities
How do we help our kids get to a place of advocating for their own learning needs, particularly if they struggle with anxiety or communication?
1. Start early!
Shoshana Goldberg, a special education teacher in Wake County, North Carolina, recommends modeling advocacy early and often, and not just in school-related matters. Encourage them to ask for help in a store or invite a friend over.
2. Work together as a team.
Goldberg believes that teachers, students, and parents need to work together to develop a cohesive plan, as well as build rapport with one another. “Ideally, there is enough support to allow for everyone to feel comfortable taking a risk,” Goldberg says. That might involve slowly reducing services and accommodations as a student develops new skills. Or it could mean trusting your child to address concerns with their teacher without your direct involvement.
Whatever the team ultimately decides, patience, resilience, and open communication are key. “Situations may not be handled exactly the way that the parent would have handled it, but what might be gained is worth it,” says Goldberg.
3. Encourage kids to understand their diagnoses and take charge of any communication that concerns their interests.
Block had her own children begin advocating for themselves in fifth grade by attending IEP and 504 meetings with the team. They also carried a copy of the accommodations in their binder or backpack so they could share their needs with their teachers. “When you teach a kid to self-advocate early, then they know what they need and aren’t afraid to ask for it,” she says.
This skill is even more critical down the road at college. “It is very important for students to become their own advocates when it comes to communicating specific learning needs at college,” says John Spiesman, director of the student success center at Lake Erie College in Ohio. That starts even before deciding what college to attend, he says; it’s important that the prospective student (not just their parents) meet with the school’s coordinator of disability services to decide whether the school is a fit for their unique learning needs.
4. Learn when to let go, even when it’s so hard.
The goal is that “by college, students should be prepared to express their own needs to the coordinator of disability services, and to continue to meet with the disability staff regularly to navigate the college education system,” says Spiesman.
But if we want to get there, we have to start now. This is the toughest part for most parents. Teachers agree that students need to practice developing flexibility and independence, and that can’t happen if we smooth out all the bumps along the way.
Recently, my son complained that he wasn’t allowed to wear noise-canceling headphones in the halls between classes. I was outraged. His sensory accommodations were clearly outlined in his IEP! But my son got angry when I told him I planned on emailing his case carrier.
“I was just complaining,” he said. “They’re my ears, and I’ll decide if I want to say anything about it or not!”
Point taken. It’s a long journey, and not always a smooth one. But nothing compares with watching your child successfully advocate for themselves, speak up, and soar.