Helen Simpson is a 28 year old FASD advocate living in Portland, Oregon with her husband and furbaby. She loves reading, writing, and talking with others. Her passion is to help people. In her blog, “Love Me Enough. Faces of Fetal Alcohol.” Helen combines her talents, passion, and diagnosis to create a positive view on FASD. She currently works for a Premiere Google Partner in Client Services and billing.
This interview was conducted on September 9th, 2017.
Cameron Koob: I wanted to start by asking you, since it is [FASD Awareness Day], what does advocacy mean to you?
Helen Simpson: It’s a positive thing, there’s so many struggles you go through before you even have your diagnosis of FASD, before that moment, through your whole life you’re gonna’ struggle with all the effects you have from that, so FASD Day is a way to show that your life is more than your diagnosis, it’s way more than that, you can make something positive out of something that very much so negatively affected your life. It’s a way you can thank the people around you that have been such a big support group, that have helped you through those moments. It’s just a way for you to bring awareness and hopefully stop women who are going to become pregnant or are pregnant from drinking.
CK: Thank you for devoting yourself to this cause. Do you think you could talk a bit more about when and how you were diagnosed?
HS: Absolutely- I was adopted when I was about 6 months old. My parents knew a little bit of background, that I was born addicted to heroin and cocaine and I had many other birth siblings that my parents knew had suffered from my mother drinking during the pregnancy. So they had a little background about it beforehand, [but] they didn’t know exactly how it was going to affect me. I didn’t speak for a long time, I had problems with speech, my Mom had me in speech therapy, that was a big part of it. I cried a lot as a child, muscle pains, what have you.
I was 11 years old when I actually got my diagnosis, I was attending a Catholic school and other people were really the ones that realized it. People around me saw the tremors, I felt it but I thought it was nerves, maybe. It was definitely affecting my day to day life, I was very self conscious about it. I had already had a therapist to work through issues, they thought that I was bipolar, they had given me that diagnosis, ADHD, they gave me that diagnosis. So I was already on medications trying to conquer that part of it. So we went to a doctor, my psychologist suggested that we go to a doctor and see what else is going on and that’s when they gave me the diagnosis that it was tremors from FAE, that’s Fetal Alcohol Effect. They didn’t think it was quite to the point where it’s Fetal Alcohol Syndrome (FAS) but they saw some aspects of it from my nervous system.
At that point, that kind of made me feel a lot better. I felt different the whole time, my whole life I’d felt different than other people, and that’s something I’d really struggled with, my self esteem, and also why was I not good enough, that my birth mom had to do all this stuff, also plays a big role in that. Once the diagnosis came we started medications to try to control the tremors, I started at 10 mg of Propanolol and I ended up at 160 because the tremors were that bad, but you know through medication and therapy and support, it definitely helped.
CK: You’re incredibly articulate now too- you mentioned speech class helped you, was there anything in particular that worked for you? How did you come around to sharing your story?
HS: You know, I was so young I don’t really remember [speech therapy] I have to slow down and really think about my words because in the moment I’ll mess up words a lot because I’m overly excited or anxious, words just come out a jumble, writing’s always been a lot easier.
What really made me want to become an advocate is in junior high school I started talking to one of my birth sisters that’s a year younger than me, Gabriella, and our stories were very similar. She had effects, she was diagnosed bipolar, she was drug-addicted at birth to methamphetamine, and I felt like I was supposed to do something really great with this, because she really struggles a lot more than I do. I also have another birth sister, Carmen, and the effects that it’s had on her- and I don’t want to say I’m doing better by any means, but the effects that it’s had on all of us have affected us differently, and I thought “Okay, I’m doing pretty good in life, I’m doing pretty good, I’ve got a good handle on this, but I need to do something about it.” Because when you’re a kid it’s a lot harder to deal with- it’s already sucky to be a teenager- and you throw [FASD] into the mix and it’s just makes it hell, I mean high school and middle school were hell, you couldn’t pay me a million dollars to ever go back to those days.
I needed to do something positive, and I went to college right out of high school, and this was the defining moment- I had just graduated high school early, I was 17 years old, I wanted to be an English teacher, and so I went to Harford Community College in Maryland. So I was in my English Class where I had an incredible teacher, Miss Hutton, and I went to my speech class – that was really hard. Speech class was so difficult because A) I’ve already tried to conquer the speech thing and B) I’m nervous you have to be in front of this whole classroom talking.
Our first speech was an informative speech, so we could choose anything we wanted to talk about that we informative, so I decided to talk about Fetal Alcohol Syndrome. I practiced and I practiced, and I cried in front of my family every time I tried to read it because it really impacted me. After I gave the speech in front of my class, my professor, Mrs. Hart, she says “Listen, I just want to let you know that your speech really touched me, I don’t know if you know this but, my niece has Fetal Alcohol Syndrome.” It turned out her sister in-law was my professor Mrs. Hutton, and she had adopted a child with special needs who has Fetal Alcohol Syndrome. So my speech professor said “You’re doing really great, I’ve never met anyone with FAS who is doing this well, and you really gave me hope.” And she was so touched by this, and I had never met anybody else with Fetal Alcohol Syndrome, maybe I had, but it’s not something anyone is ever open about. It’s not like you meet somebody going down the street and you say “Hey I got Fetal Alcohol Syndrome” – that’s really not how it goes.
I was really blown away by that- I’ve always been a writer so I talked to Professor Hutton and told her that Professor Hart informed me she had a daughter with special needs, and I told her that I had FAE, and that I think it’s amazing she adopted this girl and is fighting so hard for her, because when people fight for you, it makes an incredible difference. Long story short, they just really filled my heart with hope and made me feel like I could make a difference, since I had an impact on their lives. I started to write a book about Fetal Alcohol Syndrome called Shameless and my Education Professor really worked with me on it, really cared about how it was going along, and the story I had to tell. I had an article written about me at that college about how I wanted to be an advocate, and that really resonated with me. I thought this is what I am supposed to do, I want to make a difference in people’s lives, and if this is the way I’m going to do it, then yes, absolutely.
CK: That’s wonderful, and you took all of this in stride and made it something you’re passionate about. That’s impressive- do you attribute your vastly positive experience overcoming adversity to your upbringing at all?
HS: 100 percent. My parents are absolutely amazing. My dad is a retired minister, my mom worked a lot in the mental health area and wanted to be a nurse. They’ve adopted 6 girls in total and they have done everything possible for their children. A lot of my siblings had many issues growing up, and there’s nothing that my parents didn’t do. They sacrificed their whole lives to make sure that their children know they’re loved, have had all their needs met, and having said that, our needs go far beyond any “normal” child- we’re talking therapy sessions for all of us, doctor’s appointments. My mom was so busy doing all of this stuff. They really did give their life to do that. Had I not had parents so willing to really make sure that I was okay , I think my outlook would be very different.
CK: Do you have any advice for parents or relatives who recently came into a position where they are caring for a child suffering from prenatal alcohol exposure? Anything you wish more people would know?
HS: There are moments where you’re going to be really frustrated, as a teacher or a parent, because your child will be hard to deal with at times, but at the end of the day just keep in mind that this child so desperately wants to be accepted by other people, and this child is going through a million things in their own mind that they’re not good enough, that they’re different, that they just want to make their parents proud. They’re already fighting a million battles in their own head, and I know it can be frustrating, but just don’t give up on your child. Every day let your child know they’re loved at the end of the day, after an argument or whatever, at the end of the day just regroup and remember that your child is doing the best that they can do at that moment, whether you see it or not.
CK: Thank you for that. Would you be able to talk a bit about your job, and if your life with FASD has affected it at all?
HS: Like I said, I still shake, even with medication I shake a lot, so I’m really self conscious being in front of other people. I have really bad social anxiety so being in front of people period is just a hoot and a half I guess. I do customer service, and it can be really frustrating. I had one customer tell me “Are you deaf and dumb? Why do you talk like that?” because I was getting really worked up and my words weren’t coming out necessarily the greatest, and I replied
“I have a problem speaking” and she responded
But you’ve got to put yourself out there, you always need to set better goals for yourself, see if you can reach those. I really love my job, my bosses are incredible and my peers are amazing, really supportive of my blog, of everything I do and who I am as a person. It can be demanding, but you’ve got to put yourself out there and prove that you can do it, and I’m really blessed that my coworkers and everybody have been so supportive.
CK: Thank you so much for sharing your story!
HS: Thank you!