Real Stories: Living with FASDs

Brenna

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 was slow to reach many milestones as an infant. Brenna also 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 age," her mother, Heather, recalls. She also took everything literally. When she said, "her classmates might be talking behind her back, Brenna said that wasn't true because she would hear them." When Brenna said she thought she would hear them, she took it to mean they would be behind her back talking.

Benefits of a diagnosis

Brenna's older sister was the 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.

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.

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. Rather, Brenna couldn't do it or lacked the skills and ability. They had to give Brenna the space and time to do it.

Heather commented, "It was helpful to get the diagnosis since it made resources in our area available to us, 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. For example, there are others who must be reminded of personal hygiene, even though they are almost in high school." The diagnosis also explains why Brenna could be disruptive in school; the classes might be too hard for her to follow.

In addition to the support group, the diagnosis helped Brenna get access to local services. Having a diagnosis also 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 FASDs. 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.

Taylor

Getting a diagnosis

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 use disorder while pregnant. This information from Taylor's adoptive parents, Mark and Cathy Allen, was helpful to finally diagnose him with an FASD. After Taylor's diagnosis, the Allen family connected with FASD United (formerly NOFAS) and the Kennedy Krieger Institute for help.

Misunderstood behaviors

Taylor has struggled with many issues. This includes difficulty maintaining attention, inability to manage time, poor problem-solving skills, inability to learn from consequences, and social awkwardness. He has also suffered from anxiety and depression. Cathy said, "Taylor has the outward appearance of any 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 much 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. 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 at the beginning of their FASD journey, we are healing and helping ourselves. We are reminding ourselves 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. I walk by and listen and I can't help but tear up because I was there with my parents. I know what it was like for my mom when she made that call to Kathy [Mitchell, 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 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. At the end of the day, no matter how bad, we are all smiles because we've met people just like us."

Sasha

Alexander "Sasha" Cook was adopted in 1997 at the age of 5. Now at 23, Sasha and his mother, Melissa, share his story.

As a child and young teen, Sasha faced numerous difficulties. These included learning problems and struggles with social relationships such as interacting with classmates. It also included 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

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. This includes having structure and 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 of children with FASDs, we are their external brain. Our children can be successful in a safe, structured, under-stimulated environment that builds on their capabilities to help through the challenges."

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 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 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. For example, he answered questions about FASDs at a seminar hosted by the Georgia Department of Behavioral Health and Developmental Disabilities.

Sasha also provided information about FASD United's (formerly NOFAS) Georgia chapter. FASD United, a national nonprofit, is committed to preventing FASDs and supporting individuals and families living with FASDs.

As busy as Sasha stays, he still participates in fun activities. This includes 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 5 years," continues Melissa. "I have found that promoting physical activity through individualized sports 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.

Frances

"FASD has affected my life in many ways. I was born 6 weeks early and weighed 3 pounds, 11 ounces. As a child, I never knew what it was, but it was hard for me to make friends. 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 do a lot of writing to express my feelings and that 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. If there's one woman who is thinking about having a child and is drinking and hears my story, it's worth it.

"I want people to know that there is hope. I keep telling myself, if I can survive, others can too."