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Stories of Fetal Alcohol Spectrum Disorder

I knew my birth mom drank. I knew she may have been drunk when she gave birth to me. I always assumed she did not drink that much, and she didn’t drink enough throughout her pregnancy to affect me. I also thought maybe she did drink a lot, and it was only by the grace of a higher power that I turned out so well.

Fast forward to May and June of 2013, when I discovered that my birth mom not only drank daily, but drank all day, every day. She was a chronic alcoholic, according to her friends and co-workers who worked with her every single day, in a bar. She would drink as she worked as a bartender, then finish her shift and become a customer, continuing to drink as she sat on a bar stool, drinking away her pain and sadness. Her coworker verified that my birth mom was indeed intoxicated when she gave birth to me.

Take another leap into the year 2014, when my adoptive mom and dad received a pamphlet on fetal alcohol spectrum disorders, and my mom called me up, choking back tears. She read the symptoms to me over the phone. I possess about 90 percent of them if not more.

  • As an infant, I had a thin upper lip and still have that trait today.
  • I was diagnosed as “failure to thrive” by my pediatrician at 18 months of age.
  • I have vision difficulties, which can be due to an alcoholic mother.
  • I struggled from my elementary school years through graduate school with understanding how to write an outline for a paper, and then writing a cohesive paper. My papers were long and drawn-out, and the main points were hard to decipher at times.
  • I did not pass graduate school due to my lack of professional writing skills. I went to graduate school for Speech Pathology, and I did well in the classroom setting and taking tests where memorization was key. I fell apart when I was asked to student teach a group of five children, all at different levels of learning. I could not figure out how to teach them and keep it simple.
  • Solving word problems in math was a weakness of mine. I could solve one word problem, but if any of the names or places changed, even if the way to solve it was the same as before, I would be at a loss.
  • I can’t follow a map, and if I follow verbal directions to a destination, I have to follow them multiple times before I know the way.
  • I am considered by my parents to be immature in some ways. I am extremely impulsive and do not always recognize or think about consequences before making a decision. This has caused problems for me in my marriage and prior relationships.

Each of these can be characteristics of fetal alcohol spectrum disorders. Once my mom read me the characteristics, she was not the only one with tears on her cheeks. It all makes sense. My mom, dad and I feel such a sense of relief now, knowing my issues may have a reason behind them.

The week before Thanksgiving 2014, my mom and dad arrived at my house. Their trip was two-fold. They came for the Thanksgiving holiday, but also so my mom could attend an important doctor’s appointment with me. We arrived 30 minutes early and walked through a maze of hospital hallways until we arrived at a pediatric genetic clinic. It was as if I had entered Disney World. A huge Theodore Chipmunk stood at the entrance, and I mean huge. It went from floor to ceiling. I had to follow little colored footsteps to the reception desk.

My mom and I were then taken into a back alcove where my vitals were taken. Next was a patient room where I waited for about five minutes, at which time a young woman pregnant with her first child walked in and introduced herself as Katie, a genetic counselor. She took down my family history, and said Dr. Shur would be in shortly. We waited… and waited… and waited some more. About 45 minutes to an hour later, a young, vibrant lady walked in. “I am Dr. Shur, and it is a pleasure to meet you! I am so excited to get to meet with a 34-year-old who wants to discuss the possibility of having effects from fetal alcohol. I have never had a patient your age. I am so pleased to meet you!”

Dr. Shur then began to study my face, and my hands, and my now bare feet. She made notes on a piece of paper, and took out a book which had diagnoses in it. She would jot down some facial characteristics I had, and then refer to her book, explaining what she was writing and researching. “You definitely have a long, thin philtrum (the area between your nose and upper lip). You have slight palpebral fissures for both eyes, the left more so than the right (the distance between the corners of your eyes). You also have hockey stick formations on both palms (lines on my palms). Oh, and your pinky toes are characteristic as well (hypoplasia of the pinky toes, no toenails ever formed).”

She took out a tape measure and measured my head. “Your head size is in the third to 10th percentile. This is so hard to diagnose, especially because I don’t know what your head size should’ve been at birth. I did not have the opportunity to hear it from your birth mom’s lips that she was a drinker throughout your pregnancy. (She passed away in 1999 due to alcoholism and falling down the stairs and breaking her neck). You say friends of hers said she drank every day. You say they told you she was drinking when she went into labor. Your mom was told she may have been drunk during the delivery. You definitely have fetal alcohol effects. I would say fetal alcohol syndrome, but without getting to talk to your birth mom, I can’t put that down as a diagnosis.”

At that moment, she stopped and looked at me and my mom. She told me I was a beautiful, successful woman, and told my mom that she had done an amazing job raising me. My mom’s answer was, “We just treated her like a child, and gave her lots of love.”

Dr. Shur’s diagnosis was what I wanted to hear. That may sound odd, but it is the answer I needed for all the “whys” of the many impulsive choices I have made in life. It explained why I have always struggled with understanding abstract concepts and never remembered how to get to the mall. It explained so many things. Why I went from zero to sixty with my children when milk spills, or act like the sky is falling if I trip over a toy.

Before Dr. Shur left the room, she told my mom and I a story about one of the families she saw, and how the mother sobbed when she diagnosed her adopted child with fetal alcohol syndrome. She told us she was so happy to have met me, because she can now say she met a 34 year old who has lived with fetal alcohol effects for 34 years. She was encouraged that I am a successful employee, daughter, wife and mother. Those words touched my core. If I can help those parents who feel there is no hope for their children diagnosed with fetal alcohol syndrome, then I have made a positive impact on a small part of society. I don’t know what the future holds for me but I am more than ready to walk through those doors that await me.

I have a video I hope helps parents, educators, doctors, and others like me who are affected by FASD:

From Darkness to Light

Egotistical, like a child
Naïve at times
Forget reading a road map
Ut Oh when it comes to math problems
Physical and mental exhaustion can transpire when setting priorities
I went through 34 years; I had become the fun-loving “little sister” to everyone
I laughed with my peers and friends when I made the wrong turn going to the mall, or gave the wrong answer to a teacher
I was comfortable with who I was
I have been diagnosed with Fetal Alcohol Syndrome
Now tears fall
As I realize the Reason for me being fun-loving and young spirited is somewhat because of the disorder
I thought I was laughing with people
Now… I think I was being laughed at
A new start
Through 34 years of darkness
There is now light
Shadows are dancing and changing from uncertainty to hope
Through awareness, hope is born
Through hope, success begins and continues
Here’s to HOPE.
-Rebecca T.

This personal story was shared by Rebecca Tillou on The Mighty. It appeared originally at adoption.com

To find more community, stories and information, click here.

What is FASD? Check Out Our FASD Resource Directory Drinking & Pregnancy

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