Indiana Alliance is excited to share we have added Rebecca’s Spotlight to our website. We want to create a space where individuals living with an FASD can share their stories. This space is called Rebecca’s Spotlight to honor self-advocate Rebecca Tillou and her work to give other self-advocates voice. If you’re inspired to share YOUR story, let us know!
Tears of having an FASD become tears of hope for others
Hello to all you readers out there. My name is Rebecca Tillou, and I live with Fetal Alcohol Syndrome. I was diagnosed at 34 years old, by a Pediatric Geneticist. I live in Albany, New York, and there were no diagnosticians who specialized in diagnosing FASDs, let alone ADULTS who may have an FASD. So, I sent in photos of me as a baby, in addition to my health history and what I knew about my birth mom, and the pediatric geneticist took me on as a patient! The geneticist measured my head circumference, the distance between my eyes, and listened to my emotional, social, and academic struggles. I told her my birth mom had been a chronic alcoholic, per her coworkers and friends. She diagnosed me with Fetal Alcohol Syndrome, but could not write it down as a diagnosis code because she didn’t have verbal proof from my birth mother that she had drank during pregnancy.
Throughout my life, I have had struggles in school and socially, and chalked it up to my unknown genetics. To who I was. “Rebeccaisms” if you will. Once I had the diagnosis, my “Rebeccaisms” had merit, and they had a reason. 3 of my struggles are IMPULSIVITY, not understanding social boundaries, and following directions to get from point A to point B. Impulsivity is my biggest one. It gets me into trouble with spending money. Amazon and the “swipe to order” function should be locked on my phone. I see it, I want it, and I buy it. Now, I DO NOT spend thousands of dollars on an item without consulting my husband, who is my external brain. I DO buy little things that can add up to hundreds of dollars! Regarding social boundaries, I am extremely friendly with EVERYONE. I think everyone wants to be my best friend immediately, and will ask a stranger I met a few moments ago for their phone number to keep in touch. I am horrible at remembering how to get from point A to point B. Even in my own neighborhood! Thank goodness for GPS! If I had to read maps, forget it. Can’t do it. I am one of those peeps that goes one way, and one way ONLY to get somewhere. Even if there is another way, I rarely will go another way. I am confused enough by my normal routes. I take my children to Taw Kwon Do two nights a week, and have been doing so for 2 years now. I still, to this day, will turn the wrong way out of the parking lot to get home. It used to be laughable. Now, it is just annoying. To everyone.
FASDs present strengths too! Get this: I perseverate. I get into a project, and I hyper focus on it. I perseverate on everything that goes into the project. This is a great tool because I get work done, and I usually do a thorough job. I work as a claims adjuster in auto claims. I manage medical claims. I have done this for 15 years. I use my perseveration, or hyper-focus, to investigate the claims for fraud indicators. It helps me catch the bad guys. I like to say, “I DON’T PERSEVERATE, I PASSIONATE.” Another strength I have is my friendliness. I “love” everybody. I am that person who will talk to the lonely old man sitting by himself at dinner. Yea, that is me. One more strength is that at 41 years old, I act like a child with my children. I love to be imaginative with my 9 year old, build Legos with my boys, and act silly with them. I appreciate my 9 year olds love for stuffed animals. Both of us in a store with stuffed animals is so much fun.
FASDs are lifelong disabilities, but please know, they don’t define ANY OF US. I am learning every day that I have many strengths, and I unlock more as life moves forward. I am learning that one strength can lead to another strength, and even struggles can lead to strengths. I tell my story often, and I have learned that if my tears of realization of having an FASD can be someone else’s tears of hope, then I have made a difference.
“I am learning every day that I have many strengths, and I unlock more as life moves forward.I am learning that one strength can lead to another strength, and even struggles can lead to strengths.” – Rebecca Tillou
More about Rebecca Tilou
Rebecca hopes to spread her knowledge of what it is like to be diagnosed as an adult with FASD – which is often called an “invisible disability.” Read more about her own journey of self discovery here and watch a video she created for others here. Rebeccas has also written a book called “Tenacity” about her struggles to understand not just her biological roots but herself.