Rebecca Tillou is 34 years old and lives in Albany, New York with her husband and two sons. She works as a claims representative at an insurance company and recently found out that she lives with a Fetal Alcohol Spectrum Disorder. In this interview, Rebecca discusses her experience, talks about how she learned that she has an FASD, and shares strategies she is using to help manage her behavioral challenges. Rebecca hopes to spread her knowledge of what it is like to be diagnosed as an adult with an FASD.
Andy Kachor: Hi Rebecca, we really appreciate you giving NOFAS the opportunity to share your story. Could you talk about how you were recently diagnosed with an FASD?
Rebecca Tillou: Hi! I was adopted at birth, and my adoptive parents didn’t know much about my birth mom. They knew she may have been drinking during the pregnancy, but nothing was confirmed. When I was a baby I kept getting ear infections, I didn’t eat, I was very quiet, and I started to drop off the growth chart. I was very tiny and very sick. My pediatrician had mentioned back in 1980 that fetal alcohol was a possibility for why I wasn’t eating and why I wasn’t gaining weight. As a baby, I had physical characteristics, including a long philtrum between the nose and the upper lip, and a problem with my eyes, something about the distance between the eyelid and the under eye. And my pinky toes never formed completely. So, my parents took that under consideration but in 1980 there wasn’t much out there on fetal alcohol and not many resources or help. My parents had me tested at John’s Hopkins for Cystic Fibrosis, hoping for an answer.
So as I got older, I got tubes in my ears. I started eating again. I was a happy, content, successful child. I did great in school, grade-wise. I was very amicable and fun to be around, very quiet and shy. In high school I had some typical teenage drama with my parents, like dating people they didn’t like, but nothing too bad. Then I applied to colleges. I went to SUNY Geneseo in New York, outside of Rochester. I majored in Speech Therapy. I did great in the classes, but I found myself really struggling when it came to teaching and trying to make lesson plans. I just couldn’t get my head around making a lesson plan so kids would understand it. And I didn’t know how to change a lesson so that children at different abilities would be able to understand it. In graduate school, the same thing happened; my lesson plans fell apart and I actually ended up failing graduate school because I could not get lessons together to teach children. My paper writing was atrocious. I couldn’t get my thoughts in a cohesive manner.
That prompted me to look back to my elementary and high school experiences. I never understood outlines—I never knew what to put under the ‘A’ and the Roman Numeral “I.” In textbooks, I would highlight every single word because I couldn’t figure out what was important and what wasn’t. I never really understood the little increments on a ruler—I still don’t. Now I can tell time with analog clocks, but that was a struggle for me. All of these things just came back to me when I failed grad school. But I just thought ‘Oh you know, whatever’ and I let it go. I didn’t talk to anybody. I didn’t know how it all applied to my life; I just thought it was who I was.
Fast-forward to now, I work at an insurance company. I’m a very successful claims representative for medical claims. I’ve been married for ten years; I have two beautiful children—very, very smart children. One child is almost seven and the other is almost three. When I had my first, I backed off, and I let everyone else take care of him. Now that I look back, I think I was overwhelmed. Now that I have my diagnosis, I think I just didn’t know how to do certain things or how to handle a baby or how to prioritize what needed to be done with him and be able have time for just me, my husband, and work full time.
As my child got older, it got easier, and then I had my second son. And with two kids and working full time, I was very overwhelmed. And I found myself going from zero to sixty over nothing. Like if one of them spilled milk, it was a disaster. And I would cry and scream at them, and it’s really not their fault. It’s only spilt milk—no pun intended there—but I couldn’t cope. The littlest things set me off. I’m a full time working mom with two kids, and a house and a husband and I think I struggle with it a little more because my brain is a little mixed up with the fetal alcohol.
Years went by after I had my kids. My mom sometimes gets frustrated because we’ll go somewhere and I’ll forget the diaper bag or forget to bring extra diapers. And it’s the details; I’ll remember details about stuff that no one cares about but things like that—life skills—I do struggle with and this is when fetal alcohol was brought to light—when we started wondering if I had it. I started to look back over my life and…I’m 34, but I act young sometimes. I act young some of the time and it’s hard for me to figure out what the best things are for my sons and my husband and I sometimes. And I can act selfish…a lot. Which is part of fetal alcohol, because my brain will sometimes act like an egotistical child—like an eight or nine year old where I want what I want and I don’t really care about other people.
One day, my mom called me, crying. She had received a pamphlet in the mail from Bethany Christian Services (I was adopted through their agency) and the pamphlet was about FASD. She saw the letters and she put it aside. And she looked at it later and thought, ‘Hmm, what is that?’ So she’s looking at the pamphlet and she called me and said ‘I got this pamphlet. I want to read this to you.’ And I had probably 95% of every symptom and characteristic listed in the pamphlet minus the facial abnormalities because as I got older, they faded. So it was a shock, but it made sense, and now my mom and I were on a quest (me more so) to get a diagnosis because I finally thought I had figured out why I was the way I was. After I got married and even before—even now—I have a lot of impulsivity issues where I do things and don’t think about consequences. For example, when I found my birth family, I booked plane tickets to go meet them, and then I told my husband. I don’t think about the consequences or if we have enough money. Again, it’s the impulsivity and that’s a big thing that worries me. It’s the one thing that I keep thinking about.
So my mom gets the pamphlet, she talks to me, and I decide that I want answers. I had support from my mom and dad, and my husband. My parents were totally supportive; I was able to talk to them about how to go about finding answers and getting a diagnosis. So I went to my primary care doctor and started listing the characteristics I had had throughout my life and the pamphlet my mom had read. And he looked at me and said, ‘Hmm!’ He’d had some patients that had fetal alcohol spectrum disorder so he referred me to a neurologist. I walked in to the neurologist appointment and thought that he could diagnose me, he knows parts of the brain; this is going to be easy. So I walk in and the neurologist comes in and said ‘Well, I Googled FASD right before you came and I don’t really see any facial characteristics and I don’t really know anything else about it so we’ll do a neurological assessment on you but I can’t diagnose you. And you’re older and you seem successful, so I’ll see if you have any neurological/learning deficits and we’ll go from there.’ And he was great; I mean, he tested me and I faltered on spelling words backwards, categorizing animals (and I don’t know any day to day news that goes on unless it’s associated with celebrities or music and apparently that was a deficit as well) so he referred me to a neuropsychologist. They didn’t take my case because I wasn’t a stroke patient; they referred me to another neuropsychologist—I never heard back from them. So I was at a crossroads whether I just let it go and think I had fetal alcohol because at 34, how is a diagnosis really going to change me? But I wanted a diagnosis so I could work from there and be even more successful.
So I went online and I Googled “Albany, New York doctors for FASD.” I don’t know how I came up with it but every doctor treats and diagnoses children. There are no doctors that I have found that diagnose adults. Everything is geared around children because early intervention is so important. I called this one geneticist in Albany where I live. She’s a pediatric geneticist and I sent her pages of why I thought I had it and pictures of me as a baby. She took my case. I went the week before this past Thanksgiving to see her. She was extremely excited because she’d never diagnosed an adult. She said I had some facial features; between my upper lip and my nose and my eyes, my toenails, I have a palmar crease—the hockey stick crease on my palms, which can be indicative of fetal alcohol.
I know the history of my birth mom now because I found out last May who she was. I found out she was a chronic alcoholic through people that worked with her. She died. She fell down the stairs in an intoxicated state in 1999 and broke her neck. I got her autopsy report and her blood alcohol level was a .4-something at the time of her death. So I knew that she was an alcoholic-she always drank; no one ever knew her sober.
I told the geneticist about my birth mother, and in the end, I got an FASD diagnosis and she referred me to a behavioral cognitive therapist. I had to look for one because she didn’t have any that dealt with adults. So I found one through my primary care doctor and I had my first session last week. And my impulsivity is due to fetal alcohol spectrum disorders and he is helping me with any decision I make to lay out all of the pros and all of the cons and if it’s not a good decision to switch my train of thinking and say ‘I shouldn’t do this because A, B, and C’ before I go forward with anything. It’s very intense therapy, but it is going to help and…when I actually got that diagnosis, my mom drove with my dad to South Carolina to go to the doctor’s appointment. And when the geneticist gave me the diagnosis my mom was relieved, and I was relieved because I now had an end result but I also had a starting point for my future to help me.
Andy Kachor: Great, thank you! Why did you decide to tell your story?
Rebecca Tillou: My whole reason for telling this story is that I’m one of the few people who was diagnosed with an FASD later in life. I struggled for 34 years just thinking it was me—you know, I’m Polish so I was thinking, ‘It’s just me, I’m Polish, I’m dumb.’ I got laughed at a lot by my friends and I laughed with them because I do stupid things, I don’t get jokes and now I know why and I just hope that more adults who may have struggled in life—and I didn’t struggle a ton because I grew up in such an amazing environment; I was loved a lot, I was educated thoroughly, I had great teachers who helped me when I needed help until I got to college and grad school and then the help stopped, which made me falter—but I just hope that older people like me who know that their mom drank and they wonder why they’re struggling…I just hope that they know that they should look into it because there are ways out there to make them successful and I just hope in the future there are more doctors and more neurologists who get more education on this disorder because it’s so widespread and I just feel like we’re just touching the tip of the iceberg with all of it—all of the disorders and all that comes with it. Maybe it’s because I’ve been looking for it now, but it feels like now is when everything comes to light with what the disorder is and I just hope it keeps coming to light and educating everybody. And that’s it!
AK: That’s really great of you to share your story and it’s just really helpful to have your perspective of an adult living with an FASD, especially one who was diagnosed later in life. It’s going to be really helpful to other people with an FASD, or who think they may have an FASD, to hear your story. I think your story is interesting there are some relatively subtle behavioral challenges that can be overlooked when you’re that successful. Have you experienced any specific consequences of FASD at work?
RT: Actually, at my job what I do—I’m a claims representative—and we have to write up proposals to get more money from people’s claims to pay different parts of it. We pay for people to be out of work from their policy, but we have to write a whole proposal to management stating why we need more money based on how the accident happened. We write two-three page reports with details like how they got injured and whether or not the injury makes sense. Then we send the reports to upper management. Mine are one of the only ones that come back and I have to redo them two or three times. Before I got diagnosed that was a big struggle.
It’s hard because it affects my job and my work ethic because we are under time restraints, so when I have to spend so much time fixing one report all my other duties at work fall by the wayside, and while my boss is extremely understanding, my trouble with writing these proposals is concerning because it seems like I can’t keep up. Well, I can, but I struggle with this kind of writing. So I went as far as to go to upper management and asked them how to write these proposals because they’re the ones checking it. One of them gave me some suggestions but they don’t help because I think I understand the suggestions, but I don’t. She’ll tell me to try and make the proposals concise, but what is concise in my words isn’t concise in hers. It’s affected my job. The good thing is that I work for a good company who is inclusive of people who may have struggles, but it affects me so, it’s hard.
Also, my impulsivity has made me make choices that are extremely regretful and the consequences have not been so good. I take responsibility for my choices, but I strongly believe that FASD has contributed to my impulsivity. So there have been some bad choices, in high school as well, and I take responsibility.
AK: Yes, there’s a certain subtlety to your problems at work—not enough to make you lose your job, but enough to make things more difficult for you and I don’t think everyone understands the subtlety of that.
RT: Yeah, well there’s a domino effect. You know, because I work on a team so if I fall behind then other people have to take up the slack.
AK: Could you talk briefly about your environment growing up? How would you describe your household, your parents, and the resources and community you had growing up?
RT: I had an amazing childhood. I grew up with my parents and my older brother, who was their biological son. I never felt like an outsider, ever—they loved me and I was their child. What had happened is that my parents gave birth to my brother and then had a baby girl who passed away at one week old and my mom was told she couldn’t have more kids so that’s why they turned to adoption. But when I entered their family, I was theirs. We grew up in the suburbs of Maryland. The school system was ranked top five in the state I think, and it was an excellent school system. My parents from day one read me books about adoption, even though I couldn’t understand it at that point. They were open to me asking questions and never hid it from me, which I think was incredible. They understood that I was going to have questions and they weren’t going to hide anything.
My parents and I always got along; I never got in trouble until my senior year in high school. I always did what I wanted, I was a straight A student. I was very close, very close to both of them.
AK: That sounds great. I know you talked a lot about struggling with abstract concepts like reading a ruler and telling time. I was wondering if you had trouble finding friends or if you were comfortable with other people?
RT: That was always an issue for me. Growing up I had two best friends who weren’t friends with each other. I didn’t have a ton of friends; I mean I was friendly with everybody and everyone was nice to me but I didn’t go out with groups of 10-12 girls and go wild or go hang out at somebody’s house. I was never that person. To this day, I don’t like too many people. It makes me overwhelmed and I don’t know where to go or what to do. So I stuck to my two best friends. I had a couple of other friends who I hung out with occasion, but that was pretty much it and I was okay with it. Sometimes I wanted to be popular because that was the thing to do, but I was never outgoing. I’m way more outgoing now than I ever was.
AK: Cool. Are there any other hobbies or interests you’d like to share to give us a better idea of who you are?
RT: Sure! Back in high school I was a runner and I ran cross-country and track and I loved it. Now I’m trying to get back into it but I’m older now so it’s kind of slow going and painful. But I do it, and I love to run. I love spending time with my kids, I love it. Today’s a snow day and they’re both home with me. So, I’m a runner, I take care of my kids—I love that. I’m a family person; I love just hanging out.
AK: Sounds great. How has knowing about your FASD diagnosis helped you deal with your behavioral challenges and clarify your understanding of the disorder? Have you found specific interventions to be helpful in your behavioral therapy?
RT: Well, I’ll start with being diagnosed. I felt like I wanted the answer, and that with an answer I could go further in trying to figure out strategies in trying to help deal with my deficits. I don’t like that word, but…the behavioral cognitive is going to help me with my impulsivity, which has had negative effects on me and my family. With every decision I have made or want to make, I have to stop and just break it down, which is very hard for me because I don’t like breaking things down. I like to just plow forward and that’s how I got through school too but now I need to be more cognizant and break down everything. I’m impulsive when I want to visit somebody and buying a plane ticket. I don’t worry about the money; I just click and think it’ll all be okay. Now with the therapy sessions, I have to bring those decisions to the therapist and together we’ll break down the pros and cons of making that decision and deciding if it’s a good idea. It’s great to have strategies I can utilize.
AK: Well, thank you so much for sharing your story. Is there anything else you’d like to add before we conclude?
RT: Well, I just really hope it can just bring to light that it’s never too late to get tested and get an FASD diagnosis and get assistance or strategies.
AK: Great, well it’s been great talking to you!
RT: You too!