Why Reaching Families Early Matters
Amanda Robb’s story, written by Molly Brown and Amy Geoffroy
Reaching families early in their disability journey is critical to support them in setting a positive trajectory for their child’s whole, full life. A new diagnosis is often a time of uncertainty and confusion for families. They can feel isolated and alone without a network of support and community or the reassurance of good information and resources. This was Amanda’s experience. She agreed to talk with us at FACT Oregon to help other families know they aren’t alone and to give some context for the work she hopes to get more involved in: new parent support.
Amanda is a mom to two kiddos, a wife, and a nurse in the labor and delivery unit at a small hospital in central Oregon.
When Amanda first received her son’s autism diagnosis, she received many messages from friends and family expressing sorrow, and she also found that she had many questions while facing a new landscape with uncertainty. Despite her medical background, Amanda says she had very little personal experience with disability prior to her son’s diagnosis, and she hadn’t been exposed to the concept of ableism or prepared for how to advocate. “In high school, I wasn’t exposed to people with disabilities,” Amanda says. “I would have been such a better person if I had been exposed to disability at a younger age”. Her lack of exposure to disability made the transition to parenting a child with disability and navigating new information overwhelming, she says. “In the beginning, I used social media and the internet to find legitimate information. When Nate was first diagnosed, I absorbed everything and became really activated to do everything! This drove me a little bananas.” But Amanda was still approaching her son’s disability from the viewpoint of the medical model of disability - a viewpoint which was fostered during her training as a nurse. This changed once she got involved with FACT Oregon. When a friend recommended FACT Oregon as a resource, she immediately registered for an upcoming regional summit in her area. Amanda says that experience felt like a fire had been lit in her. She felt encouraged to look at her son’s disability differently - not as something to be fixed and treated or to feel sad about, but something that is natural to him and doesn’t mean he’s any less worthy than his peers. She felt more prepared to take on the victories and challenges life presented with her son’s needs and strengths in mind. She was inspired to spread awareness and to help other families who don’t have experience with disability get the resources and support they need from the outset.
Amanda doesn’t want people to see her son and say “sorry”. “I want other people to know this is just a part of life” and that he “is worth celebrating and worth knowing.” As her son embarks on his education journey, Amanda embarks on a similar journey - one that has her advocating for more inclusive practices in her district, fostering connections with other families to generate real change, and meshing her personal and professional expertise to help place family-centered supports in the hands of families new to disability. Reflecting on her goals for the future, Amanda says “I want to bring more awareness to families who are just starting their journey.” She’s excited to begin sharing resources like FACT Oregon’s disability-inclusive storybook Dream To Go Far with colleagues to bring a gift of support and community to the families her hospital system serves. She knows how important this awareness and connection is.