For five years in a row, Debbie Raymond has obtained an FASD proclamation in her small town, Prosser, in Washington state: “This was my hometown and the town I raised my children in for over 15 years until they were both out of school.” FASD is an issue that hits close to her heart and home as her son’s diagnosis took twelve years to receive. “I took him to Children’s Hospital when he was 6 or 7 years of age for his first visit there to try and determine exactly what his developmental issues were and to obtain a diagnosis.” However, this proved fruitless, and they were sent to another doctor’s office, where, even despite associated facial features, a diagnosis was not given. “Unfortunately, we had no confirmation of prenatal alcohol exposure because I adopted my son internationally,” Debbie explained her research and perspective to the doctor who still would not diagnose him with FASD: “Eventually I found the UW FAS Diagnostic Clinic from my advocacy work.” This struggle to attain an accurate diagnosis is not isolated and is in fact very common for those with FASD. Once the diagnosis is official, a new challenge appears.

Raymond’s son’s diagnosis came in 2020, ”It was a relief to finally have, but unfortunately it did not come with any services or supports.” This is similar to many people’s FASD journies because the necessary services are too often lacking or non-existent in individual areas. Debbie Raymond has chosen to become a passionate, vocal advocate, “I knew that if I didn’t become the microphone for this disability, that those in my community including my son, would not have representation or awareness…Additionally, if I did not provide accurate information, awareness, and education that my son and others would continue to be judged and labeled as “bad or problem kids” because of the symptoms of their disability.” The main problem besides not having supports are that when they are present, they are not truly FASD-informed.

Speaking on education in her state Raymond says, “Even while in school, services that are available are provided by staff who are untrained and uneducated about FASD.” In turn, Raymond and others like her have picked up the torch themselves in order to make sure their kids, and all those with FASD, are fairly and accurately represented in spheres like the educational space. “Services that need to be provided are lifelong services for individuals based on their specific needs that would be both in-school, in-home, and accurately staffed residential facilities for those who cannot for whatever reason live with families or do not have families.”

So, how has Debbie Raymond tried to promote these services and perspectives? A state proclamation every year doesn’t hurt… “State proclamations bring awareness to the disability, those living with it, and their families, and this awareness hopefully highlights the need for policy to fund supports, education, and other needs of our community.” In addition to proclamations, Raymond mentions the informed need at a federal level: “We need the FASD Respect Act passed and for all states to receive funding to provide the lifelong supports everyone with an FASD needs, not just to survive, but to thrive!” Addressing the lack of FASD-informed resources can feel daunting due to the disability’s nuance and stigma, however, solutions are available!

Raymond believes that the best way to undertake this goal and promote meaningful solutions is “For everyone in the FASD community to work locally, regionally, state-wide, nationally, and internationally to continue to raise awareness, contact their elected officials on all levels, work with FASD United and support the FASD Respect Act, and continue to do so every single year.” Caregivers like Debbie Raymond inspire us to keep pushing for FASD respect, awareness, and inclusion. Thank you to all those who work tirelessly and continue their dedication to this incredibly important mission.

Check out Debbie Raymond’s blog here.