When I was diagnosed with FASD at age 34, I vowed to use my experiences and hard-earned life lessons to help others.
My plane landed in Minneapolis, Minnesota November 19, 2015 at 10:00 p.m. A shuttle pulled up to the airport and scooped me up to take me to my hotel. I entered the hotel and was given my room key. I took the elevator upstairs, struggling to keep my eyes open. It had been a long travelling day, and I missed my boys.
I opened the door to my room, and my eyes zoned in on an orange bag with red tissue in it. I opened it up, and in it I found a baby bottle of water, some mints, a bag of cookies, and a granola bar. I also had been given an orange nylon bag with the initials MOFAS on it, and in it was a pad of paper and an orange pen. I felt like a celebrity!
The next morning I woke up and went downstairs to work on my speech. I was excited to reach out to others. I had been given questions to answer, and I wanted to be prepared. I noticed as I finished answering the questions that there was an increase in hustle and bustle in the main entrance. I started towards the entrance, and I saw all of these tables set up with names of organizations. Fliers,
Author Rebecca Tillou holding her “Speaker” badge.
business cards, pens, markers, and magnets filled every table. Each organization in some way played a role in those affected in some way by a Fetal Alcohol Spectrum Disorder.
I made my way through the slowly growing crowd to the long table against the back with name tags sprawled out. I found my name. I started to smile. This was such a big deal to me. I was going to get my story out there. I was hoping to give hope to those adoptive and birth parents who were losing hope with their children. I wanted to give hope to those living with an FASD. I wanted them to know that success can be found, it can be won.
I was then introduced to the director of MOFAS, Ruth Richardson. An amazing, poised individual. As I shook her hand, I couldn’t help but feel an immense gratitude for everything she had accomplished, and would accomplish throughout the coming years. I was also introduced to a wonderful young lady who volunteers at MOFAS on the board, and is a clinical social worker for addicts. She is my age. We were chatting, and she came out within the first couple minutes with, “ . . . and I have Fetal Alcohol Syndrome.” I was able to see firsthand why it is called an invisible disability, besides looking at myself in a mirror. I felt a little bit like I did when I first met my birth mom’s brother in 2013. I finally had met someone who had a similarity to me that I had never come face to face with before. One would never know this lady had FAS. After our conversation, I was certain I had made the right choice to attend the MOFAS conference.
I spent the remaining hours in the day going to different tables, telling my story to the vendors. I felt a little out of place when they asked which table I worked at, and I would say my piece. “I am here as part of a panel. I was diagnosed with FAS at 34 years old.” Many did not bat an eye. They smiled sincere smiles and wished me luck. A couple vendors looked wide-eyed at me and didn’t say anything right away. They then smiled and said, “Oh how wonderful!”
This experience proved to me that adults diagnosed with an FASD as adults, and adults living with an FASD, still need to put their marks on the maps. I am hopeful to be one of many who can change society’s perspective. An FASD is not just a child diagnosis. It also does not ever go away. It is permanent brain damage.
I was intrigued by some of the vendors that came to the conference. There was one that worked with elementary children with an FASD on social skills. I loved the idea. This vendor also worked with the parents, teaching them how to go about planning a play date with their child who may struggle with impulsivity, time management, and not knowing personal boundaries. I was amazed.
That night, I remember going to the bar in the hotel and having dinner by myself. There was another convention going on that day, for Union Workers of some sort. Next to me at the bar was this group of older men from that conference. “It was so funny…Tom was drinking a beer outside the conference room of some conference called MOFAS? Something about mother’s who drink during pregnancy. What a funny sight that was.”
At that moment, I chose to speak up. I turned to them and threw my badge that said Speaker on it across the bar top. The one guy who had been talking looked at my badge, and the first words out of his mouth were, “Oops.”
