5 ways to advocate for your special needs kid

You’re grappling with the emotions of discovering your kid has a learning disability and suddenly find yourself trying to decode the foreign language of IEPs. You might also worry that your school isn’t doing enough, or doing the right things, for your child. But your experience can be influenced by how you present yourself and your kid’s needs. Here’s some encouragement from the experts.

1. Get to know the system and work with it When I learned that a potentially beneficial reading program wasn’t available at my daughter’s school, my instinct was to march into a meeting and demand it be offered. But a special-education specialist working for the school board advised me to ask: “What do you have?” rather than insisting this other program was what my kid needed.

“I’ve watched parents take both routes—some go in yelling, while others work with the system,” says André Deschênes, executive director of the Learning Disabilities Association of New Brunswick. With 35 years’ experience behind him (he worked as a methods and resource teacher for 20 years), he says the key is to do your research so you’re getting as much as you can out of the existing system. “Don’t go into meetings ignorant,” Deschênes says. Use the online workshops available through learning-disability associations, get to know common terminology from the education ministry’s website, and find out what rights and options your kid has.

2. Don’t play the blame game “Most teachers know—and will probably agree—your kid needs more. But they’re all overwhelmed,” Deschênes says. Instead of pointing out what your kid’s teacher isn’t doing, he says, try framing it like this: “I’m uncomfortable with my child experiencing failure here, here and here. How can we best help my child achieve?” Then, suggest or ask for solutions that fit within the system. “You want allies,” agrees Annie Kidder, executive director of People for Education, a non-profit in Ontario. She recommends asking the teacher how you can work together to help your kid succeed. When people call her office to inquire about what their legal rights are, she knows they’ve taken a polarized approach—and she acknowledges that you may need to be assertive. “Be forceful in a measured way, if and when it’s needed,” Kidder says. “You know what they say: The squeaky wheel gets the grease.”

3. Memorize these questions A likely scenario (it happened to me): You’re in a meeting with eight other people, all of whom know the system and the terminology, and are making decisions about your kid in front of you. It’s confusing and overwhelming, and you’re not even sure what questions to ask. Lawrence Barns, president and CEO of the Learning Disabilities Association of Ontario, suggests keeping these two handy: “What are the outcomes?” and “What are the consequences?” Then, even if there are words you don’t understand, you’ll likely be able to filter through them, Barns says. This is important, because decisions being made can impact where your kid is taught (in the classroom or a specialized program) and what is expected of her.

4. Trust your gut Many people—and many opinions—are involved in the development of an IEP, but of them all, you know your child best. “You might have a wonderful teacher and a wonderful school, and everybody’s working hard. But your kid might come home and dissolve into tears every night,” says Barns. “Ask yourself whether you’re seeing improvement and if your kid’s self-esteem is OK.” If not, then it’s time for a meeting to see what can be changed.

5. Be reasonable Remember that you’re dealing with a public system with limited resources. Yes, your kid deserves support, but you’re still going to come up against wait-lists and unavailable programs. Deschênes says there’s usually a reality check of sorts that happens once parents have a private assessment done and are handed a list of remediations in the final report. “You’re the client. Of course the psychologist is going to put all sorts of things in there that could help,” he says. But when the school can’t deliver everything on the list, there’s naturally a letdown. Focus on what is available, and keep in mind that the support your kid needs may not end at the IEP. You might consider private, specialized tutoring or group programs with other kids with learning disabilities that can help improve your kid’s mental health and self-esteem

A version of this article appeared in our October 2016 issue with the headline, "A hand-holding guide to IEPS," p. 66.

Read more: A hand-holding guide to IEPs
When your kid is diagnosed with dyslexia Coming to terms with my daughter’s learning disability