Bringing the ‘I’ to the IEP: Kari’s Advocacy Journey
“As someone who is neurodivergent with neurodivergent kids, is African American, is a woman… how do you uphold your family and cultural values interacting with a system that is made for NOT that? Navigating all that at one time is challenging.”
Meet Kari Q., a neurodivergent parent to five neurodivergent kids. Kari's journey through education, disability, and health systems has been challenging as she navigates systems that aren’t designed for people like her and her family. In this blog post, we explore Kari's advocacy journey.
Kari’s Perspective
Kari often uses the term "neurodivergent" to describe herself, her family, and her approach to dealing with education and disability systems. She frequently attends meetings with school teams due to her five children's IEPs. Additionally, she utilizes wrap-around services, leading to even more meetings and check-ins. As a parent, Kari has questioned what educators and providers say about her children, often feeling that something does not quite align with her knowledge of her kids. She grapples with the added complexity of wondering if her family's race and neighborhood or her gender and disability play a role in the challenges they face within these systems. Kari's personal experiences, coupled with her unique neurodivergent communication style, make her continually evaluate her interactions and communication.
Communication Challenges
At the start of the school year, one of Kari’s 11-year-old twins began complaining about his class schedule, and his behavior escalated quickly at home. Kari was unaware of significant changes from the previous year, had growing concerns about her son’s behavior and mental health, and felt stymied in her attempts to get answers from the school. Kari asked wraparound to help her bridge the communication gap. While wraparound was able to help Kari make progress in some areas, when it came to Kari’s concerns about school, special education services, SMART goals, and IEP documentation, Kari’s had a growing feeling that wraparound was not the proper channel to address those issues. An outside provider suggested Kari contact FACT Oregon to help unpack her concerns about school and identify next steps.
Support from FACT Oregon
Kari's advocacy took a positive turn after she spoke with Heather from FACT Oregon, who guided her through IEP processes, Procedural Safeguards, Prior Written Notice, and effective communication strategies. Kari then attended a walk-through IEP clinic. The more she learned, the more she recognized that she had not gone through proper channels to request support or evaluations, and that both twins needed significant changes made to their IEPs. FACT Oregon assigned Alicia to provide intensive support. With Alicia’s help, Kari is rebuilding school-family communications, reviewing IEPs, understanding special education processes and timelines, identifying SMART goals, making requests for a Functional Behavioral Assessment and dual eligibility assessments, and submitting a Request of Information to get appropriate school records.
Kari’s Empowerment
Kari is effervescent about the support she received from FACT Oregon.
“It made me feel awesome. It made me feel empowered. I’ve learned how to write SMART goals in less than a week! I’m now trusting in the process and seeing it slowly pay off. My end goal is to get this situation fixed and to bring the ‘I’ into the IEP.”
We couldn’t have said it better ourselves, Kari!
Kari’s Q. has five awesome kids, all on IEPs.
〰️ Support Families Like Kari's! 〰️ Make a Year-End Gift Today!
〰️ Support Families Like Kari's! 〰️ Make a Year-End Gift Today!
Kari's story highlights several important lessons:
Understanding the IEP: Kari emphasizes the significance of thoroughly understanding every aspect of the IEP document, ensuring it reflects discussions about a child's strengths, needs, goals, accommodations, modifications, and how special education services will be delivered. FACT Oregon provides resources and training to help parents with this.
Effective Communication: Kari acknowledges the importance of clear communication with school teams and that decisions related to special education must be made at IEP meetings – not through informal channels or wraparound meetings. FACT Oregon helps families apply effective communication strategies.
Intersectionality: Every family is unique, and many families like Kari’s navigate multiple systems and services at once. This can cause confusion and frustration. At FACT Oregon, we try to meet families where they are and ask questions about the barriers they face so we can provide better support.
SMART Goals: Understanding the goals in your child's IEP is essential. Are they Specific, Measurable, Achievable, Relevant, and Time-Bound (SMART)? Have questions? FACT Oregon can help!
