FASDs: My Story
Real Stories from People living with Fetal Alcohol Spectrum Disorders
Heather and her husband Jason adopted Brenna and her three siblings from foster care. Weighing just 4 pounds and 13 ounces at birth, Brenna was so small that she came home wearing a doll’s clothes.
For years, Brenna’s parents struggled to get her accurately diagnosed. She had been slow to reach many milestones as an infant and participated in early childhood services for speech and physical therapy. She was small for her age throughout elementary school. Brenna also struggled academically. She had trouble staying on task, getting easily frustrated, and having outbursts and tantrums both in school and at home.
It was also difficult for her to understand concepts such as time, money, and organization. “When Brenna was in elementary school, she preferred to play with preschoolers rather than kids her own age,” her mother, Heather, recalls. She also took everything literally. For instance, according to Heather when she said, “her classmates might be talking behind her back, Brenna had replied by saying that wasn’t true, because she would hear them.” It took Heather a bit to figure out that when Brenna said that she thought she would hear them because she took it to mean they would be right behind her back talking.
Brenna’s older sister was first of the children to be diagnosed with an FASD; Brenna was diagnosed later at the age of 12 years. Deciding if a child has an FASD takes both a physical and developmental evaluation. Since there is no biological test to diagnose FASDs, clinicians must assess a child’s exposure history, behavioral and intellectual function as well as look for neurological and physical features. Also, many other disorders have similar symptoms which must be ruled out. Among several other tests Brenna’s evaluation included an independent living/life skills test.
Benefits of a Diagnosis
According to Brenna’s mother, “Getting the diagnosis helped understand where Brenna was coming from.” Heather said that it helped them reframe the challenges they faced. It wasn’t that Brenna was being defiant or wouldn’t do things they asked of her, but rather that Brenna couldn’t do it or lacked the skills and ability. They had to give Brenna the space and time to do it.
Heather also commented that, “It was helpful to get the diagnosis since it made available many resources in our area, including a support group. Being part of the support group has helped us learn more about FASDs. It is a relief to know there are other children with similar issues, who, for instance, must also be reminded of personal hygiene, even though they are almost in high school.” The diagnosis also helps explain why Brenna could be disruptive in school, as the classes might be too hard for her to follow.
According to Heather, “Hearing about similar examples helped one not feel so alone. For instance, many of the children can’t find their coats, shoes, homework, or favorite toy they just had. Or how when they are done with something, they just walk away, leaving it for you to pick up, clean up, or put away. What takes typical kids weeks to master, may take your child months or even years.”
In addition to the support groupexternal iconexternal icon, the diagnosis helped Brenna get access to local services and ensured the school system had the information they needed to best support her.
Increasing Awareness in Her Community
Brave and cheerful, Brenna has been instrumental in increasing awareness about FASDs in her school. After her diagnosis, she proudly wore her FASD T-shirt depicting a strong woman and handed out buttons and flyers about this condition. Her mother says, “I was a bit worried, wondering if she would be able to handle the comments or teasing, but Brenna did great!”
Brenna is a kind and happy teen. She loves helping people and cares about her friends and is always checking up on them. She also calls and checks on her grandmother daily.
Brenna enjoys playing the piano and being in the choir. She also recently took up junior varsity color guard and is looking forward to the competitions.
CDC would like to give a special thanks to Brenna and her family and FASD United (formerly NOFAS) external iconexternal icon for sharing this story with us.
FASD United (formerly NOFAS) honored Taylor Allen, a 23-year-old young man living with an FASD and his parents, Mark and Cathy Allen, for their work with the FASD community in the Washington, DC area.
Taylor was diagnosed with an FASD in 8th grade. Before he was diagnosed, he struggled and had been misdiagnosed with attention-deficit/hyperactivity disorder (ADHD) in first grade. He lied, took things in school that did not belong to him, and recalls being disconnected and very frustrated. In the 8th grade, Taylor took a pocket knife to school and was suspended. Since it was a weapon, he had to go through the First Offender’s Program and seek counseling. The counselor noticed a gap between action, reaction, and consequences, and had Taylor tested. Taylor was finally diagnosed with an FASD.
When Taylor was born, his birth mother had disclosed to the doctor that she was dealing with alcohol dependence and drank alcohol while pregnant with Taylor. This information from Taylor’s parents was helpful to finally diagnose him with an FASD. After Taylor’s diagnosis, the Allen family finally connected with FASD United (NOFAS at the time) and the Kennedy Krieger Institute to get help for Taylor.
Some of the behaviors Taylor has struggled with include difficulty maintaining attention, inability to plan and manage time, poor problem solving skills, inability to learn from consequences, social awkwardness, anxiety, and depression. Cathy Allen, Taylor’s mother, shares that “Taylor has the outward appearance of any other 23-year-old since he is on the high functioning end of the spectrum, so his FASD behaviors are often misunderstood – causing Taylor extreme anxiety and depression.”
After a great deal of struggle and perseverance from Taylor and his family, Taylor earned his associate’s degree in electronics from a trade school. Taylor currently works as a lead custodian at an area airport. He enjoys playing and watching baseball, tinkering with computers, reading, and spending time with his girlfriend of two years. Taylor hopes to further his education and he is working toward living independently.
In His Own Words
“We were like so many other families out there. We were looking for guidance and trying to find counselors, practitioners. Through NOFAS, I was able to have a voice and speak out. By talking with others who are just at the beginning of their FASD journey, we are also healing and helping ourselves – by reminding us that we are not alone.
My mom talks to families that call her all the time. They are just trying to get information, to understand, to have a shoulder to cry on. I hear these conversations. They are so emotional that I walk by and listen in and I can’t help but tear up because I was there along with my dad and my mom. And I know how it was like for my mom when she made that call to Kathy [Mitchell, Vice President, FASD United (formerly NOFAS)].
CDC would like to give a special thanks to the Allen family and FASD United (formerly NOFAS) for sharing this story with us. View more personal stories at FASD United (formerly NOFAS).
Now, NOFAS has empowered me. Several times a year they give me the podium to speak and tell my story. Getting up in front of a crowd to speak about FASD takes away the control that this disability had over me. I didn’t know why I did a lot of things I used to do. But with this, I do know why I am doing it. For the past year, I have been leading a teen group with the help of Kathy [Mitchell, Vice President, FASD United (formerly NOFAS)] and my dad. We mostly talk about what it’s like to be us, our day-to-day life, things we run into. We get into how bad it feels to be misunderstood, how we just wish people would understand us. But at the end of the day, no matter how bad, we are all smiles because we’ve got together and met people just like us.
I want to thank NOFAS for letting us be a small part of everything they do. We are going to keep talking, keep listening, and keep educating until everyone in the world knows that you cannot drink during pregnancy.”
Alexander “Sasha” Cook was adopted in 1997 at the age of five. Now at 23, Sasha and his mother, Melissa, share his story in recognition of FASD Awareness Day.
As a child and young teen, Sasha faced numerous difficulties. These included learning problems, struggles with social relationships such as interacting with classmates, difficulty with team sports since rules were too abstract, and trouble handling everyday things in life. He still remembers that being with his fellow students was “no fun.”
Sasha had many evaluations and was diagnosed with multiple disabilities. Knowing he was exposed to alcohol before birth is what helped his family and doctors best understand his challenges. Typical milestones that other children reached and took for granted seemed out of reach for Sasha.
Coaching, Adapting, and Modifying Expectations
Yet despite the odds and with support from his family, friends, church, and school community, Sasha has come a long way. Sasha has shown great potential, has many strengths, works hard, and clearly shows his resilience and depth of character. “We did the majority of behavior modification at home through structure and by understanding that this is not a moral disorder but a brain-based disorder,” explains Melissa.
“It is constant coaching, adapting, and modifying expectations for them, realistically…. matching their potential with their gifts and strengths. As parents, we are their external brain and our children who have FASDs can be successful in a safe, structured, organized, and under-stimulated environment that recognizes and builds on their capabilities in order to help through the challenges.”
Sasha with his mother, Melissa, and sister, Nadia, holding a proclamation signed by the Governor of Georgia in 2013 declaring September 9 as FASD Awareness Day.
Employee of the Month
Sasha successfully completed high school and has been gainfully employed by a large national grocery chain since 2009. Over the years, Sasha has been given additional responsibilities by his employer and was also recognized for his willingness to help others. Sasha proudly shares details on the numerous awards he has received and his growing customer service skills. “I was excited to be Employee of the Month in January 2013 and now I’ve been promoted to work the cash register. I like the people who I work with.”
Active Member of the Community
Following in his mother’s footsteps, Sasha is an active member of the community. He understands his disability and helps bring support to others. Recently, he participated and helped answer questions about FASDs at the 10th annual Seminar Series for “Critical Issues Facing Special Needs and at Risk Children” hosted by the Georgia Department of Behavioral Health and Developmental Disabilities, Suicide Prevention Program and The Supreme Court of Georgia’s Committee on Justice for Children.
Sasha also provided information about FASD United’s (formerly NOFAS) Georgia chapter. FASD United, a national nonprofit resource of the FASD community, is committed to preventing FASDs and supporting individuals and families living with FASDs.
As busy as Sasha stays, he still participates in fun activities including playing the piano, playing tennis with the family, and participating in a church bowling league. “Sasha is an excellent bowler and has crafted his talent for five years,” continues Melissa. “As a mother raising children with FASDs, I have found that promoting physical activity through individualized sports such as bowling, tennis, and ping pong are important tools to enhance a child’s daily functioning.” Sasha is a very well-rounded young man and receives great family support in all his endeavors.
Melissa would like to thank the FASD Communitiesexternal icon who have been especially helpful to her and her family in the past few years.
CDC would like to thank Sasha and Melissa for sharing their story.
This is the story of Melissa’s experience with alcohol use during pregnancy and her journey to find the best possible care for her son.
“I drank at the beginning of my pregnancy; before I found out I was pregnant. My doctor told me that it was okay to continue to drink wine during pregnancy. He said I could have a glass of wine at night with dinner. He said it might even help me relax and improve circulation. Not only did I think drinking wine during pregnancy was okay, but I thought that it could be healthy. He never asked me if I had a drinking problem, or how many drinks I have a day, or if I binge drink. There wasn’t any dialogue. I really wish that my doctor would have had more dialogue or asked me questions about drinking alcohol during pregnancy.
“When my son was born he looked perfect. He has amazing strengths. He’s brilliant and he’s an amazing musician. However, as he got older I realized that things just weren’t quite right. He doesn’t like how clothes feel. He wore the same outfit for almost a year. I finally found a pair of socks that he would wear. Then the company stopped making the sock. That wouldn’t be a big deal for most people, but it was a terrifying moment for me. We went through about 25 packages of socks before we found a new brand that he would wear.
“On his first day of kindergarten, the school called me because he had turned over all of the chairs that people weren’t sitting in, turned over items in the kitchen area in the classroom, and thrown his shoes at the teacher.
“Most kids will get mad when they have to end play dates or sleepovers. But instead of just getting mad, my son tried to jump out of the car the other day because he had to leave a sleepover.
“When I finally realized what was going on, it was a relief, and it was horrifying, and I felt guilty, and I felt ashamed. But mostly I felt relieved to know what was going on.
“If a pregnant woman said to me, ‘I drink a little bit here and there and I was told it was okay,’ I would tell her that she wouldn’t if she had to live just one day with the way that I feel about myself, knowing how my son has been affected by my choices.
“I am angry that I was given wrong information about drinking during pregnancy. I want to tell as many people as I can about it. You never know how much alcohol during pregnancy is too much, so why take that chance?”
CDC would like to give a special thanks to Melissa and FASD United (formerly NOFAS) for sharing this story with us.
“FASD has affected my life in many ways. I was born six weeks early and weighed three pounds, eleven ounces. As a child, I never knew what it was but it was hard for me to make friends and I found myself feeling afraid of others. School was very hard for me, especially math and English. I couldn’t comprehend them. I completed high school and tried college, but it didn’t go well. Then I got a job.
“Working was hard. I didn’t know what I wanted to do and I went from job to job. I couldn’t hold on to a job. It was hard for me because I developed anxiety, depression and an eating disorder. I still deal with that today. I see a therapist often and take medication. It’s still a struggle.
“I do a lot of writing to express my feelings. It helps me. I also watch people very carefully to learn how to do certain things. I tend to read everything twice to comprehend what I am reading. For my anxiety, I avoid loud and crowded places. I always surround myself with people that I feel comfortable and safe with.
“I got involved with an organization called Al-Anon because I grew up in an alcoholic family. I do share my FASD story at the Al-Anon meetings. I always tell myself if there is one young woman who is thinking about having a child and who is drinking, if I share my story and that one person hears me, it’s worth it.
“I want people to know that there is hope. I keep telling myself, if I can survive, others can too. FASD comes with a lot of shame and challenges. I always tell people to stop and think before taking that drink. Pregnant women should remember that they are not drinking alone.”
CDC would like to thank Frances and FASD United (formerly NOFAS) for sharing this personal story.
If you would like to share your personal story, please contact us at firstname.lastname@example.org