Meet the Staff: Heather Carleton
“INVOLVE your kids! If your child isn’t already part of their IEP process by middle school, start bringing them. To quote my middle schooler when a teacher told him he had to do something because it was on his IEP: “Well that isn’t a goal I wrote. I didn’t write it, and I don’t want to do it.”
My name is Heather Carleton. I identify as a white, cis-gendered woman, mother, wife, daughter, advocate, and engaged community member. I experience a disability and require accommodations and communication tools to be successful in my work, at home, and in community. Yet I still struggle to identify as disabled and am now coming to terms with how ableism has influenced my self-perception.
My husband Matthew and I co-parent Ethan (12) and Elliot (9). Our kids ignited my advocacy and helped me see the world with more clarity. Our kiddos are Powerful Learners and Curious Investigators. They are Kind and Sweet. They are Passionate and Intuitive. Except for when they are Overwhelmed, Distracted, Reactive, and Stuck. Ethan is our storyteller, musician, future Game Designer, and YouTuber. Diagnosed with ADHD, dysgraphia, and autism spectrum disorder, he struggles to bring his best to middle school in “expected” ways. However, he has met many serious social challenges with bravery. Elliot is our caregiver and a powerful advocate for his sibling. He likes to know how things are made and imagine them better. He is also quick to raise his voice in response to frustration, discomfort, or injustice. He gets lost in social situations and has processing and attention difficulties. Both kiddos receive special education services.
During the pandemic, we saw first-hand which learning tasks and formats our kids avoided and where they excelled. We made adjustments at home and shared what we learned with their teachers. We initiated an educational evaluation for Elliot to address some concerns that had bubbled up during CDL. We felt confident to return to in-person learning, knowing that the right support would help our kids fully access learning and community. And then they went back to school and reality hit.
Ethan, who had already struggled to connect with peers and had lost social skills during the pandemic, found 6th grade SO difficult. He struggled to engage at his new school, especially in an environment focused on collaborative learning. His team expected a level of personal responsibility and self-regulation that he had not practiced before. His self-esteem plummeted. He fell into habits of headphone use and internet browsing, avoiding tasks, turning in minimal work, and refusing to participate when technology was cut off or as routines changed.
So, we called for an IEP team meeting to discuss communication strategies and accommodations. Using FACT Oregon’s templates and tools, we updated Ethan’s One Page Profile to share vision, strengths and needs, and Ethan’s preferred means of communication. His teachers were then better able to partner with Ethan and set clear guidelines for classroom engagement and testing. By the end of the year, he had enjoyed many successes. While academics were sometimes still a struggle, he made gains in areas that are just as important: his sense of identity within a group and his understanding of how to contribute and learn among his peers. That was a big missing factor being isolated at home, and it is something we are determined to help him maintain.
Matthew and I work with Ethan and Elliott at achieving balance. It is important to us to provide them with the dignity of risk - a loving push to go beyond his comfort zone and test boundaries. But we know they each DO sometimes need a break. We need to Believe them when they Advocate for breaks and space. Managing this balance has shown us that our kiddos can push themselves beyond even their own expectations.
I joined the FACT Oregon staff in October 2021 as a Program Specialist. I work on trainings, events, parent leadership, and family support. Our Support Line, where we answer questions and provide support on special education and disability-related services and systems is what I call my Heart Work. It’s here where I spend most of my time connecting with families and community partners. What has been eye-opening for me is seeing the impact that local control has on how special education services are provided across the state. I see now how special education processes are interpreted differently by different districts, and how critical family advocacy is to get appropriate services. I can see a stark difference between families who use the tools and training FACT Oregon provides to meaningfully participate in their children’s education and those who don’t – or who can’t. Our goal is to help families be aware of their rights and responsibilities, know how to make requests and give input, learn how to effectively communicate with school teams, and access appropriate dispute avenues as needed.
I am privileged to come alongside other families navigating broken systems. I love building community, forging environments that expect and welcome people with disabilities, and helping families and youth feel heard and encouraged to dream their dreams. I love collaborating with families to find the path that works best for them and their unique kiddo. But it’s also shattering to hear about children’s experiences of being misunderstood, struggling for years without supports in place, being bullied, or being subjected to ableism and racism. These circumstances motivate me and my colleagues to help influence systems change.
I’m proud to work for an organization that strives for systemic inclusiveness and recognizes the challenges and opportunities of disability as an intersectional issue. Working at FACT Oregon has increased my awareness of systemic ableism and reinvigorated me to review everything I do through the lens of Equity and Inclusion. It starts with Belief and Trust: I Believe that barriers to inclusion exist, and I Trust the stories that families share. I Believe in a future in which we recreate flawed systems to support a future in which our kiddos are understood, challenged, included, and valued. And I know that the challenges our families and youth face will not be resolved until we can partner and advocate successfully with folks who do not currently intersect with disability. Together, with Belief and Trust in each other, we can create the inclusive world we all deserve.
My advice to families:
BELIEVE that no child is too disabled to live a full, included life in their community. This theme really hit home for me when I heard from our executive director Christy Reese about how she came to that belief.
INVOLVE your kids! If your child isn’t already part of their IEP process by middle school, start bringing them. To quote my middle schooler when a teacher told him he had to do something because it was on his IEP: “Well that isn’t a goal I wrote. I didn’t write it, and I don’t want to do it.”
LEARN about diploma options BEFORE your child enters High School. By age 16, your child’s IEP team is required to begin to plan for the transition to life after school. But you don’t want to start only then thinking about diploma option – you need to plan those credits when your child starts their high school journey and understand the impact that modified curricula may have on their options.
