Parenting, Advocacy, and Experiencing Disability
By Tina Noon
My name is Tina [they/she]. My partner Kyle and I are parents to Henry, a young autistic kiddo with a heart of gold. We are a neurodivergent family. Both Kyle and I received our diagnoses as adults. I am autistic and have ADHD, while my partner boasts a single diagnosis of ADHD. As a disabled adult, I have struggled to find supportive employment under the rigid expectations of capitalism. I provide value to my family by staying home with my child, acting as homemaker, artist, activist, advocate, and caregiver for my family and community. I see these roles as interconnected threads in a braided cord.
Woven together, these identities create a stronger support for my community which I define as those of us with shared spaces, values, experiences, and goals. Community is a series of concentric circles moving outwards from me: the closest includes my friends and family, then my neighbors in the Salem-Keizer area, and then encompassing the state, nation, and globe to include all of humanity.
I feel lucky to have been connected with someone at FACT Oregon who told me about the opportunity to apply for the e3 Activating Your Advocacy Parent Leadership program. In truth, I had no idea what FACT Oregon was or what the program would cover. All I knew was that I was being offered education and training that would support my kid and my community in the Salem-Keizer School District, and that I was going to need that information. As an autistic person myself, navigating new systems and structures alone has always been a recipe for mental distress. In this case, I knew my usual coping strategies weren’t going to cut it, and I jumped at the opportunity to be part of a learning cohort before my son even set foot in a classroom.
Henry will be transitioning to Kindergarten in Fall 2022. The Parent Leadership program has provided our family with a solid foundation to build off of as we begin to navigate the public school system. He’s at an incredibly malleable age, and we are now equipped with a better understanding of what self advocacy skills we need to be teaching him in order to receive the full benefits of his special education services. We’re beginning with simple, accessible phrases like “I like that”, “I don’t like that”, and “I need help”. Through accessible communication *he* can tell *us* what he needs, and we can begin the work of putting his own thoughts into the context of his educational needs.
Self advocacy is the pinnacle of disability justice, and we hold that value highly in our family. Our son learned the word “autism” the day we received his official diagnosis, and he knows that accessibility aids are tools to support him and us. We plan to keep the lines of communication open around his education, beginning with a One Page Profile that we’ll work with him to create. As meetings have all been virtual so far, Henry has already had the chance to introduce himself to his team members more than once. We see our education planning team as one of the concentric circles of our community, and we want to empower him to build his own relationships with the individuals supporting him. It’s my hope that Henry will be an active participant in his education plan, learning how to honor his own boundaries and agency while understanding the boundaries and limitations of the systems we exist in and the people we work with.
As a disabled parent, I will be looking for and calling out the ways our school system does and does not provide opportunities for engagement to marginalized parents, including those who experience oppression beyond my experience. I hope to create and share tools and resources to support both parents and educators to work together in ways that offer everyone choices on how they can best participate. These tools, when they exist, are not readily available or accessible, and I know that if I need them and have trouble finding them, then others probably do, too. Given the growing statistics around undiagnosed neurodivergence in adults as well as the understanding that many diagnoses under the umbrella of neurodivergence are hereditary, it is imperative that accessibility extends beyond just the student to include unidentified and underlying access needs of families. I believe that many of these points of inaccessibility apply beyond neurodivergence. We must establish ways to actively support the engagement of parents experiencing other disabilities, communication barriers, and other systemic access needs.
Thanks to the education and training I received from FACTOregon’s Parent Leadership Program, I learned that the things my family needs are things that many families need. I now have the context needed to create inclusive and intersectional supports that work for my family, and that also might work for yours. For me, the most impactful part of the Parent Leadership Program was being in community with other parents, hearing their words and experiences, and learning about what they need, not only from our education systems, but from me. We can help ourselves, and we can help each other.