When parents demonstrate advocacy for their children with unique needs, it encourages their children to grow into advocates too and live their best lives.
As Arizona’s Parent Training and Information Center, Raising Special Kids helps parents access accurate information about health care, education, resources and support. Raising Special Kids staff also coaches parents to become collaborative team members when working with schools, government agencies and health care professionals. Family Support Specialists speak with 150 to 200 parents each week in an individual consultation mode. They’ll also connect parents to diagnosis-specific support groups and networks.
Raising Special Kids focuses on teaching parents the skills they need to develop effective strategies for their children. “Many times, people will call us with a singular problem or issue, and we focus on teaching them to solve the problem themselves,” said Christopher Tiffany, executive director of Raising Special Kids. “When the next issue comes up, they’ll have the skill base to work through it on their own, and the knowledge that RSK is always there for technical assistance and support if needed.”
Parents have multiple resources available to hone their advocacy skills. In addition to consultation, Raising Special Kids offers its Parent to Parent Connection program, matching parents of children with similar diagnoses for added support. Workshops delivered online and in person contribute to parents’ knowledge on specific topics like positive behavior support, Individualized Education Programs (IEPs), 504 plans and more.
In the highest level of support, a Family Support Specialist can attend a meeting with a parent for an IEP, Child and Family Team (CFT) or other need. Parents are expected to complete specific tasks first to develop their knowledge before a Family Support Specialist attends a meeting with them. Parents participate in that meeting and future meetings on their own, while the Family Support Specialist attends to encourage a collaborative relationship among all team members.
Family Support Specialists are more likely to attend a meeting with a parent who has attended a training session and participated in a one-on-one session. They will also attend meetings with parents who have disabilities, grandparents who are raising their grandchildren, or young adults who need more support.
Parents share their stories
Parents agree that it takes significant time to demonstrate and teach advocacy to their kids, but it’s worth it in the long run. Experiences like attending their own IEP meetings or participating in quarterly meetings to talk about what support they need can start building a young person’s skills.
Elizabeth Duncan and her husband adopted their son from kinship foster care at age two. He had a traumatic early childhood, which professionals initially blamed for his health issues. But Duncan still had the feeling something wasn’t right, so she persisted and her son ultimately received a diagnosis of cerebral palsy. Throughout his school years, Duncan advocated for her son to be in general education classes as much as possible. He also attended Glendale Community College and Arizona State University. He’s now 49 years old and lives on his own in Tempe.
She encourages parents to let their children with disabilities do more for themselves. “We’d go to restaurants and because he was in a wheelchair, people would talk to me instead of him,” Duncan said. “I’d tell them to ask him what he wants. Don’t talk around them; let them talk. If they can’t talk, speak up for them, but otherwise let them say what they want, even if it takes longer.”
Spanish-speaking parent Maria Martinez shared a similar experience through an interpreter. She lives in Tucson and came to Raising Special Kids for help with her son’s behavior issues. With input from a family support specialist, Martinez learned how to talk more effectively to the different departments and individuals in the chain of command at his school and to put everything in writing. This helped gain additional support and training for her son’s team. Her son has a speech delay, but he has become persistent when he’s not understood. He now insists on making sure others understand what he wants to say.
As children age, transitioning from the adult’s voice to the child’s voice can be a challenge, noted Lisa Myers, parent of an adult son with autism. Demonstrating advocacy and encouraging children to speak for themselves can help grow their skills over time.
“I pushed him to do things that didn’t come naturally for him, like asking something of his teacher or talking to another student,” Myers said of her son. “But he made progress as he became more capable and mature.” The family lives in Chandler and during high school her son took automotive classes at East Valley Institute of Technology. He now works full-time as a mechanic apprentice and is pursuing ASE (Automotive Service Excellence) certification.
Sometimes parents need to step aside and let their children do what they say they want to do. Trudy Billy, tribal program manager for Raising Special Kids, experienced this with her son, now 27. After repeated medical visits, the family continued to push for answers due to unusual medical symptoms during his senior year at Tuba City High School. Doctors finally discovered her son had a brain stem tumor. This affected every muscle in his body, and he stopped walking and talking. After radiation and chemotherapy, he needed a wheelchair and speech, physical and occupational therapy. He graduated on time and continued therapy. After a few years of therapy and part-time work, her son decided to move to Flagstaff for more opportunities. There, he got involved with the Arizona Conservation Corps office as a volunteer.
“This was the best experience of his life,” Billy said. While she had doubts about him going out on trails with his mobility and balance issues, his team looked out for him. During this stint, he discovered a love for graphic design and later attended Coconino Community College before transferring to Northern Arizona University. He plans to graduate in spring 2024.
One piece of advice Billy shares is for parents to trust their kids. “Parents might think their kids can’t do something because of a disability, but they might surprise you. Let go of the reins when you can.”
Why it’s important
Parents of children with special needs naturally worry about what will happen to them in the future, which provides another compelling reason to develop their children’s advocacy skills.
“The person with special needs will need to learn to advocate for themselves because they’ll attend to their needs for their whole life,” said Peggy Storrs, who retired from Raising Special Kids in 2017. She was part of the original team of four people that started what evolved into Raising Special Kids. Her son Sean, now 51, has cerebral palsy and has lived on his own since attending college at ASU. He’s worked for ASU President Michael Crowe for 15 years.
“We wanted to give parents knowledge and support,” Storrs said of the organization’s early years. “When your child is first diagnosed, you have no idea what to do or where to go. It’s important to provide information to parents at a level they can digest.” Through parent connections and collaboration with doctors and therapists, the initial team created a knowledge base to pass on to parents. Decades later, their work still lives on.
Foster and kinship parents can also positively impact children’s future advocacy skills, even if they only live with the children for a short time. “Depending on the child’s developmental age, they will see that there’s an adult providing safety and also advocating for their needs,” said Nancy Williams, executive director of the Arizona Association for Foster and Adoptive Parents. “Seeing an adult who is a role model and is providing for their needs can really impact a child’s self-esteem.” This impact can last into adulthood, she added.
Raising Special Kids is proud to be part of parents’ path to self-advocacy and their children’s success.