Disparity of Access Ignited Her Drive to Support Families. Meet the Staff: Alicia Riddle.
“I want parents to know that our dreams don’t have to disappear with a diagnosis. Instead, we can continue to help our children grow to be self-determined people.”
My name is Alicia Riddle, and I am a cis-gender woman of color identifying as Afro-Latina and biracial. As the daughter of an immigrant mother and Oregonian father, I had a unique experience growing up. I am the mother of two Black sons, Dominic (12) and Dyami (10.5). Our family is neurodivergent, and we intersect with disability in many ways.
Growing up, I was a child who always seemed to be in trouble. I had challenges with behavior and performance in school, but I thrived in sports. My academic performance was therefore driven by my desire to participate in sports. As a child, I had to navigate systems with an undiagnosed disability and a lack of support and understanding. This is not an uncommon occurrence for students, but it resulted in years of questioning myself and thinking that something was wrong with me. Even once I received diagnoses of ADHD, depression, and anxiety as an adult, all I wanted was to just be ‘normal.’ I didn’t realize how ingrained ableism was in my thinking about myself in relation to the rest of the world. But that changed once I had my children.
Both Dominic and Dyami have Autism, but they have had quite different experiences and journeys. Dominic had speech and developmental delays as a young child, leading to diagnoses of developmental delay and then ADHD. But our biggest concern was always behavior: he was aggressive and hyperactive from infancy. With a background in early child development, I knew there was something else going on. As he was bounced around from preschool to preschool, I fought for an Autism diagnosis, which finally came at age 5. Dominic’s brother Dyami, meanwhile, was diagnosed at age two because he showed more ‘classic’ signs of Autism, like not using mouth words to communicate. To this day, Dyami is non-speaking and uses an AAC device as a form of communication.
The divergent responses from medical and school professionals we received showed me how challenging it can be to navigate systems and feel heard as a parent. I’d always felt like I was a strong advocate: in general, I stand up for myself and speak up when something is not right. I felt like I knew the systems well. I knew the professionals I was working with. I had worked in child development. Surely, they would listen to me, right? Well, it was not that easy. Doctors and teachers continued to dismiss my concerns and disrespect the value that I brought to the table as the expert on my children.
My children also received limited access to interventions because we were low income and on Medicaid. When doctors prescribed occupational therapy for Dyami, I had to switch CCO’s just to get coverage. This also meant changing all his other providers, just so he could have what he needed. Then, we were told many ABA providers did not take Medicaid. Neither did social skills groups or other therapists. Instead, we endured limited access and exceptionally long waitlists for services. The disparity of access showed itself in many ways. It ignited my drive to support families who face additional barriers to services.
In early 2022, I applied to and participated in FACT Oregon’s Activate Your Advocacy Parent Leadership program. While I had already been advocating for my children and a few families in my close circle, that class was a lightbulb moment. I heard other parents’ experiences with the education and health system that mirrored my own, and I recognized that I was ready to serve these families on a larger scale. I learned that I could attend school board meetings, join advisory boards, talk to legislators and administrators, and find the courage to push back against systemic issues in our communities. I became excited to share my passion and help FACT Oregon bridge the gaps that families of color experience.
Alicia and her boys.
Biking along the waterfront.
In my new role as Family Network Program Specialist, I collaborate with community-based organizations and county agencies to support families in Multnomah and Washington counties, with a focus on reaching families from historically marginalized communities. I am excited to work with families and explain concepts like ableism, self-determination and living a whole/full life. Every family and culture will have their own views on disability and how it affects the individual, family, and whole community. Sometimes it is hard to understand someone’s unique views but, it is important to respect what matters to each family and help them to see that despite having a disability, their child has the ability and the right to live a full life, including disappointments and successes.
In our family, living a whole, full life looks different for each one of us. For myself, it’s managing my social anxiety and organization, so I am more active in the world, try new things and accept that I don’t need to be perfect at something to enjoy it. For Dominic, it means learning how to build and maintain relationships, including romantic ones, trying his best in school even when it’s challenging, and finding activities that he enjoys so he can develop healthy hobbies. In the future he will have the option of attending college or finding employment, and he wants to get married and have his own family someday. For Dyami, it means developing a robust and reliable form of communication, making friends that appreciate his differences, increasing the amount of time he has with non-disabled peers, and having access to interests like swimming. In the future, I hope for Dyami to be able to communicate anything he needs and live an independent life with supports.
When I think of all the dreams I have for my children, I am drawn to find out what others imagine for their kids. I want parents to know that our dreams don’t have to disappear with a diagnosis. Instead, we can continue to help our children grow to be self-determined people. I know that working with other organizations whose mission is also to serve the community by reducing barriers to access is key to connecting with parents who need support but don’t know where to turn. I hope my role at FACT Oregon will help build trust throughout the community and help other families feel empowered to advocate.
None of us go through life without help and advice from others. The best advice I ever received was to be proactive not reactive. I apply this in all areas of my life but especially in raising my children. When I think of the advice I can offer, I recall how I felt when we were struggling to get answers and feel heard. Always remember that you are the expert on your child, AND that you must learn to collaborate with the other experts to get what your child needs. The early years can be tough and confusing, but it does get easier, and your voice - and the voice of your children - gets stronger with practice. Nurture relationships with teachers, administrators and staff at your child’s school. Work collaboratively with therapists who are strengths-based. Believe in your child. Your child will follow your lead. If they see you advocating, they will believe in themselves and be strong self-advocates, too.
