Teaching Children to Become Self-Advocates
When Cami Barney gives examples of her son Calvin’s ability to get his needs met, she recalls a visit to Costco. “He wanted a drink of water,” she says. “So, he went up to the counter by himself, asked for a cup for water and wheeled himself over to the soda fountain. I was really proud at that moment.”
Calvin is five years old, and he happens to be in a wheelchair because he has spina bifida. But he is also learning at an early age to speak for himself and ensure his own needs are met. He is learning to advocate for himself—a skill that every child with unique challenges, and their parents, can benefit from.
What is advocacy? In the simplest of terms, it’s the act of speaking up for yourself—or on behalf of someone—and ensuring his or her needs are met. As parents become effective advocates for their child with special needs, they and their child stand a better chance of receiving the accommodations and support they require, which in turn can improve everything from the child’s academic performance and social interactions to their emotional health and happiness.
The tools of advocacy are essential for every family with children who have special needs to master—especially when it comes to education. But it’s not always easy for parents to figure out what their child is entitled to and get connected to resources.
“When I was teaching, I realized how much help parents needed to understand their child’s issues [and how to advocate],” says Sherilyn Walton, LCSW. As the Family Support Program Coordinator for TARC, a nonprofit organization that educates, empowers, advocates, and supports individuals with developmental disabilities, Walton works with many families whose children have special needs. She attends school meetings, answers parents’ questions and helps link people with resources.
“Parents are the experts on their child, and when they have knowledge, they feel more assertive,” Walton says. This is important, because it is all too easy for any child to fall through the cracks—and all the more so when a child needs additional accommodations that teachers and schools may not always be equipped to offer.
“At my old school, I couldn’t raise my hand because if the teacher noticed me, it was rare. Most of the time, I would have to go up to her and ask a question,” explains Noah Roe, an 11-year-old diagnosed with autism, who has sometimes struggled to find his footing in the classroom.
Advocacy exists in part because it often takes extra efforts to ensure children like Calvin and Noah are heard and helped. Schools differ in their budgets, the number of special education teachers on staff, and their understanding of children with unique needs. The level of service, opportunities and access can be an issue. Barney, for example, has had her challenges to find the right education environment for her son—sending Calvin first to the Little Lighthouse, then to a pre-K program in Bixby, then to a private preschool. This year, he’s being homeschooled.
“There’s a lot of disparity between what’s required legally versus what the school says is available. Also, where you go to school really matters,” Barney says. “All of the decisions to move Calvin have been related to his needs for school. It makes what to do and where to go very stressful.”
Barney’s challenges have been less about accessibility—most public places are wheelchair-accessible these days—and more about the everyday details that often result in complications for children with disabilities. For instance, an inadequate student-teacher ratio can be a serious problem for children like Calvin.
“We’ve been worried by a lack of supervision,” Barney explains, because other students are often tempted to push Calvin’s wheelchair. So are adults. Even though they think they are helping, this simple act can create a safety issue for Calvin. In addition, it robs him of a chance to develop a sense of competence and self-confidence, something every child benefits from.
For Barney, advocating for Calvin has meant championing his ability to take charge of his life. She pushed to get him a wheelchair as soon as other kids his age were crawling and starting to walk, so he’d learn to be mobile at an age-appropriate time.
“We have to advocate not just for his physical needs, but also his independence,” she says. “He’s learning to be independent, and he wants to be independent. And if we take that away from him, he’s not going to get that back.”
In addition to independence and self-determination, children with special needs and disabilities have a vital human need to be seen and recognized—something we all long for.
“I guess I just need to be heard, like when I have a question or something,” Noah explains.
As the number of children being diagnosed with autism continues to soar, so too do the challenges associated with helping these children excel in school.
“Children with autism often have a lot of behavioral issues at home and at school,” Walton notes. But these behavioral issues are more complex than many people realize.
“Meltdowns are like what neurotypical people think of as temper tantrums. From the outside, meltdowns can look like temper tantrums, but they’re not at all,” explains Kristi Roe Owen, who has been raising her nephew Noah since his biological father (her brother) died. “If you look closer, you’ll see the person with autism is in a state of extreme anxiety and suffering. It’s like a kind of full sensory overload.”
Challenges like this are a part of navigating autism. Meeting Noah’s needs in a classroom requires understanding how his autism uniquely affects him. And as Roe Owen and many other parents in similar shoes can attest, there is no such thing as a one-size-fits-all approach to raising any child, including those with special needs.
“The biggest thing you run into is people who think that all people with autism are the stereotype they know of autism,” she says. “This ‘method’ worked for one kid they knew, so ipso facto, it should work for your kid. The most important revelation we’ve probably had as parents of a child with autism is that we don’t know sometimes obvious things, and we have to keep learning and looking to Noah or others who have autism. Of course, now it’s much easier since he’s extremely good at self-advocating.”
As Noah himself is likely to tell you, the experience of having autism is not always what those of us who are neurotypical might expect. “It’s a different way that we think or work or whatever,” he says. “If you’re a car fan, you might understand this. If you’re a neurotypical person, I mean, let’s say you would call that a Chevy. And people with autism spectrum disorder are Fords. They’re just different things that are the same. I shouldn’t say ASD because it’s not a disorder. It’s just a different order. Maybe it should be renamed ASDO — autism spectrum different order.”
Addressing those differences effectively is why proper advocacy by parents and self-advocacy by the child can be so valuable. Like Calvin, Noah has moved schools a few times as his family has sought to ensure he received support. It hasn’t always been easy. At one TPS school, he was placed in an overcrowded classroom, a situation that was automatically overwhelming for a child with the sensory processing challenges associated with autism. On top of that, Noah experienced bullying. His academic performance began to nosedive.
“Noah’s classroom teachers were very good about listening to what we told them about his needs, but they didn’t have the time or support to give him what he needed,” Roe Owen says. The administration was less supportive, she says. “The principal was adamant that her special ed teacher was one of the best in TPS. It was very clear that the culture at that school viewed most of Noah’s issues as behavioral.”
Roe Owen said that many other parents have shared similar stories with her. “They lose countless hours in pay and often their jobs getting pulled up to the school for meetings about their child’s ‘behavior problems.’ The whole experience [at that particular school] lasted less than 12 weeks, but it was one of the most fundamentally trying things we’ve been through as a family.”
Choosing the right school is an essential part of creating a supportive educational environment. So is knowing what your child is entitled to receive in terms of support, and then communicating effectively with school staff to ensure the child’s needs are properly addressed. Working with groups like TARC, which offers its services for free, can be beneficial.
Walton spends much of her time attending meetings between teachers and parents to help the communication process go smoothly, a role she and TARC are happy to play. It helps, she says, to know what schools are required by law to provide—and what they don’t have to do.
“In-school and out-of-school therapies are different,” Walton says. “The qualifications are different. In-school therapies must be related to educational outcomes.”
A child’s IEP (Individual Education Plan), which is normally adjusted annually at the start of each school year, should spell out what therapies, accommodations, and other services the child will receive through the school.
If you have an IEP for your child but don’t understand it, Walton and her fellow staff at TARC can help. TARC can also assist parents by pinpointing available resources in the community that may be helpful to the child, both inside and outside of school.
Yet even when parents and the school are both working hard to follow a child’s IEP, things can get off track. Often, teachers simply get busy and overwhelmed with their jobs. To help prevent things from getting overlooked or delayed, parents can take steps to keep the communication lines open. Walton also suggests that parents equip the child to know what to ask for, so they can advocate for themselves.
Roe Owen says that when the system fails the child, especially those with challenges that neurotypical individuals may not face, there is a huge cost, not just for the child, but for society.
“Having a system that fails them until they’re essentially forced out of the school system, and possibly depriving their communities of their potential contribution,” Roe Owen says, “is a very real, direct consequence to failing these kids.”
For Barney, teaching her son Calvin to advocate for himself has involved encouraging him to speak and act on his own behalf whenever possible.
“For us, early on, our long-term goal has been for him to be independent,” she says. “He has a lot of doctor and therapy appointments, so from the time he could talk, I’ve had him be the one who checks in. He’s the one who talks and asks questions. When we go out to eat, I have him order.”
Teaching children with special needs or disabilities to advocate for themselves is vital, says Walton, because at some point, children will reach the age of 18. At that point, the parent is no longer automatically the legal guardian, no matter what a child’s disability is.
To teach a child to self-advocate, Walton suggests inviting the child to be present for the IEP meetings, if they are comfortable doing so. “They may not need to be there for the whole meeting,” she says, “but they can be eased into it.”
Barney recommends that parents educate themselves, do research and find support. “Always try to get multiple opinions around decisions,” she says. “One of most helpful things is finding a support group, local or online. Talk to other parents because there’s a lot more sources to draw from (than you may realize).”
Roe Owen agrees, noting that part of the role of the parent is in helping a child create relationships—a system of support. “Noah has become a tremendous self-advocate, but he has learned to go to people he can trust, so we’ve had to help him build those connections,” she says. “You’re constantly reminding yourself that you’re trying to build alliances at the end of the day.”
Tips for Advocating for Your Child
Sherilyn Walton, LCSW, has been assisting parents and children with special needs advocate successfully for years. Here are some of her tips for ensuring your child is receiving proper support in school.
Understand your rights. The Individuals with Disabilities Education Act (IDEA) makes provisions to help children with different disabilities to have their educational needs met.
Be familiar with your child’s IEP. Carry a copy of your child’s current IEP with you at all times so it can be referenced whenever it is needed. Ask questions to be sure you understand what the IEP contains.
Keep good files. Retain all past and present IEPs, as well as records and reports from any testing done by schools, outside experts, and licensed professionals.
Be able to sum up your child’s needs. Walton recommends that parents create an “all about me” sheet—a single-page document that includes the child’s picture, who the child is, what a teacher needs to know, what worked well in the past, what hasn’t worked well, parents’ contact information—at-a-glance details that can help teachers.
Draw on all available resources. TARC offers free assistance to parents, helping to answer questions, provide a better understanding of IEPs and more. CREOKS and other organizations also offer community help to children with special needs.
Become involved in legislative efforts. Many of the challenges schools face in serving children with special needs comes down to budgeting. Talk to local and state representatives. Urge them to make funding education, including special education, a priority.
Get education. TARC presents programming regularly to help parents. On October 23, Walton will be answering questions parents have about IEPs. The meeting is being held 6:00-7:30 p.m. at Southminster Presbyterian Church, 3500 S. Peoria.
Be part of the whole school. Volunteer at the school. Attend parent-teacher meetings, and get to know other parents.
TulsaKids Live! Parents Meet-Up
Navigating the World of Special Education: Helping Parents Advocate for Their Children
Lisa Turner, TARC executive director, and Sherilyn Walton, TARC family support coordinator
Wed., October 23, 6-7:30 p.m.
Southminster Presbyterian Church, 3500 S. Peoria (east door, parking lot behind LuluLemon)
Free and open to the public. Childcare provided.
Learn more at tulsakids.com/tulsakids-live.