Angelica’s Story: My Voice
By Angelica Butler
My name is Angelica. I am a mother of identical twin daughters who experience disability. Born at 26 weeks gestation, their arrival funneled us into a confusing world of strangers, medical jargon, endless appointments, surgeries, and therapies. It was RSV season when our girls were finally released from the NICU and I knew the dangers it presented to premature lungs. As a new mom, I found it all incredibly isolating. I felt out of place in new parent groups, with their babies hitting milestone after milestone, while I was still getting used to even holding my own.
We spent years in therapies and early intervention that seemed to propose the path to segregation in the name of “service”. Our transition to elementary school seemed to continue this trend. We were introduced to the Autism classroom, aides and pull out services - all of which seemed to be pulling my daughters further and further away from their peers. We struggled. How do you respond when you’re presented with a set of predetermined supports when your child just wants to be included with their peers? I saw their desire to be a part of the schoolwide community. Each morning, I would watch as my daughter would approach other little girls and try to interact with them with her limited verbal language. It emphasized to me that, yes, while my girls experienced disability, they were children who wanted to belong first and foremost. They wanted to play and laugh and learn with their peers. They wanted friends, just like everyone else. However, each time I would broach the subject of more inclusion with our school team, we would be greeted with a similar response: that this was simply how services were provided… nothing to be done. Each time, we would leave the meeting feeling unheard and confused about how to advocate. While I truly believe that our team was committed to my children’s growth and wellbeing, I don't believe they expected anything other than for us to simply absorb what they told us and follow their direction, certainly not to exercise real power in making decisions and influencing change.
Parents aren’t often given a guidebook when their disability and special education journey begins, so it’s hard to know and be able to respond and engage appropriately when you’re introduced to services and programs. I see a desperate need for parents to understand just how important their role is on decision making teams. Parents need support and tools to help them believe in themselves and know how to meaningfully participate.
This past fall, I was lucky enough to join FACT Oregon’s Parent Leadership Training cohort. It was here that I learned how empowering parent connection and engagement can be! FACT Oregon made learning about the IEP process easy and digestible. The training provided not only the ins and outs of the IEP process, but the opportunity to have other parents share their breadth of knowledge in a supportive way. I found that being denied inclusion was a commonplace struggle. I learned that cohesive teams make student plans stronger, and strong communication between team members can help bridge gaps. Additionally, I learned about opportunities to become engaged and make my voice heard. I feel like a much stronger advocate for my children now.
Therefore, I would like to urge you to engage in and support parent leadership trainings. Help parents like me navigate education and disability and empower us to push together for inclusion in our schools. Help us engage in policy and legislative initiatives so that more family experts can finally have their voices heard. Together, we can create an environment where our children live full lives in their communities.