We have all heard these words. Throughout so many seasons, for so many reasons. The I’m Sorry I want to discuss is the one I hear on occasion when I divulge my diagnosis, and how I got it. I had a table at a farmer’s market in my town over the summer for the RunFASD VIrtual 5k 2022. A man came over and asked what RunFASD was all about. I explained what FASD is, how it occurs in 1 out of 20 school age children in the United States, and is 1.5 times as common as autism. I explained my story and my diagnosis. “Oh, I’m sorry.” Came out of the man’s mouth. I was taken aback for a couple seconds. Then I just said, “Don’t be sorry. This is a teachable moment.” He smiled, and walked away.
I was recently at another event, and I was discussing my diagnosis with a woman. “I’m sorry.” Again. I get it. I don’t know what other answer I would expect, to be honest. If roles were reversed, I would probably say the same two words.
Why though? Why do people choose to answer with, “I’m sorry?” These words are the one people say when they aren’t sure how to respond. They are easy to say, and the people mean well. I mean, FASDs are caused by a woman drinking during pregnancy. Of course it is a cause to be sorry about. Saying, “I’m sorry” also comes from a lack of awareness and education about FASDs. The words come from the stigma that surrounds FASDs. Please try to understant, FASDs are not all doom and gloom. There are so many strengths! Empathy, sensitivity, laughter, people and animal lovers. These are just a few! Each of us have at least one thing we excel in. Mine are running, being creative, remembering details, writing stories and blogs. So to those who immediately think to say, “I’m sorry,” next time pause, and instead say, “Tell me more about that.”
I don’t know many people that enjoy others encroaching on their personal space. It feels weird, and it is just creepy. Even if it is a family member or a close friend. I noticed that I struggle with other people’s personal space, their EMOTIONAL, Personal Space.
When I was in elementary school, I remember kids would talk to me for the first time, and I would latch on like a piranha. Thank goodness most were kind and befriended me. They would be on the playground playing a game of make believe, and I would immediately ask to join in. Even if I didn’t know them well. I wanted to belong. Once we became friends, I was always making sure they still liked me. I would write notes to them asking, “Are we still friends?” Once, my new best friend Anna told me she wanted me to sleep over. I bugged her verbally and with notes asking when. Looking back, I realize the reason for all of this lack of awareness was my brain. I didn’t understand boundaries that I couldn’t see, those I like to call mental boundaries. I learned to stay in my lane as I matured, but I still struggled in college, although not as much. There was one instance when I was part of a church group, and I had befriended this girl, Sarah. She had dated this guy who was also in the church group. We were in a bible study one night, and I blurted out, “Did you sleep with him?” Impulsive much? Holy moly, that went over like a wet fart. We didn’t speak again. I would say I learned from that experience, but with FASD brains, if a situation is even slightly different, the rules don’t apply. Brains that are damaged can be so careless. They live by the words, “Carpe Diem,” but the aftermath can be hurtful for all involved.
I am now 43 years old, and although I have learned to think before I speak more than I used to, I still struggle. I like to say I am blunt and to the point, but let’s get real. My brain still misfires. I have learned to take notice of my misfires (usually after they happen), and I am mature enough to apologize. I explain that my brain is dysmature, and is permanently damaged due to my birth mom drinking alcohol when pregnant. I always take responsibility for my misfires, but I explain to the other person involved that my brain works differently that others. I tell them that doesn’t make it ok, but it explains my actions. It can be difficult, because those without brain damage may tell us, “If you don’t think it is appropriate to say in public, then don’t.” Uh…our brains think many things are ok to say out loud but they are not. I guess we can all use a little grace and time and patience with our brains. The positive about getting older with a brain disorder is that those around you that you may disrespect are more apt to try to understand the why, and to forgive.
So, here is to learning to drive in your lane.
I wrote a letter to the editor for a local paper last week. Thought I would share it! https://altamontenterprise.com/12152022/education-about-fasd-has-be-put-place
I had the honor and privilege to be a speaker and FASD United’s Red Shoe Gala in Washington, DC last week. What an inspirational Gala! What a rush! So, originally I was going to type my speech as a blog post, but I thought I would do one better. THANKS FASD UNITED! https://m.youtube.com/watch?v=8hGfxkNddt8&feature=share#menu
I hope you enjoy!
I saw a YouTube video the other day. It had a teacher telling her class that they had 2 minutes to finish the task at hand. I stopped the video. I then started thinking about actions teachers may take that seem efficient…for the Neuro typical child.
- “You have 2 minutes to finish the math problems on the board, then your pencil should be down on the desk.” -I struggled with this as a child. Math was my nemesis. Still is, but Alexa has become my bestie. I would be staring at my paper, 2-3 problems left…blank. My heart would start to race. I would hand it in as it was, and get it back with circles around the blank lines. My score would be ok, but minus the ones I couldn’t get to. Why a time limit? No just for neuro divergent people in class, but for everyone. Why a time limit? I know in certain occupations, time is of the essence, but why not take the time needed to teach us to remember how to problem solve before putting time constraints on us?
- “You need to take off your coat, put it on the hook in your cubby, sit down, take out your math book and turn to page 37.” Um…ok. I heard 3 of those directions. I would sit there with my math book out, no idea what page to turn to. Maybe teachers can write the directions on the board? I know teachers are pressed for time. Maybe if there are pre-made wirtten directions for tasks to be completed that are done almost daily. It will make for successful students that may struggle with multi step directions. Us neuro-diverse kiddos and adults. Success leads to happy and confident people.
- Picking on a student to show the class how to do a math problem who doesn’t have their hand up: When I was younger, I thought it was brilliant to pick a child who was not paying attention in class to get up and do a math problem on the board. I no longer feel the same. As I have gained understanding of struggles and challenges in a neuro diverse child’s mind, acting out is most likely e result of not understanding the content. Calling on a child who doesn’t understand to work a problem in front of the class is utter embarrassment. Choose a child with their hand up. Those that don’t understand the problem may learn the how do from their peer that is ready and willing to teach.
- “Write down the Homework on the board in your agenda book.”- Um…ok. What if a child can’t find their agenda book? Organization can be tough for neuro divergent kiddos. Maybe, since the lesson plans are written out anyway, hand out a list of the homework assignments to those that struggle copying into notebooks.
- “Please stop shuffling your feet back and forth, rocking your chair back and forth, and stop clicking your pen. It is very distracting.” -Those that are neuro divergent often have sensory needs. Many of us are sensory seekers. Especially when we are expected to sit for longer than 5 minutes. There are sensory chairs that rock slightly to give that sensory input. There are fidget toys. I understand neuro typical kids in classrooms may want those accommodations also. I recommend an open conversation with the classroom, including the neuro diverse child. Have them explain how these accommodations help them focus, and in turn, help the class focus.
In light of November being National Adoption Month, I have made my memoir about adoption, search and reunion and my diagnosis of FAS free on Kindle through November 10th! The link is below! https://www.amazon.com/Tenacity-Rebecca-Tillou-ebook/dp/B01F31JYCK?ref_=d6k_applink_bb_dls&dplnkId=b5c4c9a1-2a77-42a5-85d6-d46ba568deeb
1. Yesterday I told my husband and son I needed to get the refrigerator out to clean the rug.🤭
2. I couldn’t remember a word while conversing with my kids and started making spinning motions in the air with my hand. My kids asked if I was talking about cell phone service. 😒
3. I told my youngest to go wash his hands in the toilet.🤪
4. I told my kids they could go shoot soccer outside at the basketball hoop🏀⚽️
5. I told my kids to go brush their faces😆
Since my FASD diagnosis, I have learned about:
- TOUGH SHIT: As an infant, I was constipated. My parents thought it was the antibiotics I was constantly on. Nope. It was FASD. FASD is a whole body disorder. I also thought it was normal until a year ago to poop every 3-4 days. Apparently not. And hard poops aren’t normal either. (I know this is probably TMI, but if this gives any parents an aha moment, it was worth it.
- ZZZZZZs: I am always tired. Exhausted. Our brains work so hard to take in the world around us, to make sense of it. It is exhausting. I was always the last person awake at sleepovers, and as an adult, on weekends I sleep until 10 or 11 am. After going to bed by 11. I always thought it was ABNORMAL NOT TO SLEEP LATE. I didn’t like sleeping over my friend’s house and her mom waking us at 8 am on Saturday for Pancakes. Most kids would be excited. I wanted to be left alone. My Fitbit says I average 3-6 hours of sleep a night, and REM sleep is very limited, if any at all. I also have night terrors, which when I went to a sleep doctor, he couldn’t figure out what my brain did at night. He said it was strange. I asked him about it being FASD related, and he quickly dismissed that theory, not because it couldn’t be, but because he knew NOTHING ABOUT IT
- Pumpkin Carving Never My Thing: I hate touching the guts inside, the slimy texture, the smell of pumpkins…but I do love me some seeds! I remember when my mom came home with Pumpkin Painting Kits. I was excited for that activity. Never could pinpoint why i didn’t like carving. Now I know, I am such a sensory person, because of my brain. I think my brain processes sensory needs differently than others.
- Bright Light, Bright Light! -Gizmo, and me. Department stores and Big Box Stores like Target and Walmart overwhelm my senses. My mom and I just thought I hated shopping, but never had a reason why. My brain couldn’t handle it. I will go into a store feeling energized, and within 10 minutes can feel drained, like I haven’t slept in days (well, maybe I haven’t). The bright, flourescent lights make me dizzy. The colors, and the chatter and the different textures and smells, I need a small room or a weighted blanket afterward.
- IT IS ALL ABOUT ME: I consider myself, at 42 years old, Egocentric. I have a husband and 2 kiddos, but if there is something I want to do, such as go on a girls trip, I plan it, without thinking about my family’s needs. I don’t mean to be this way. It is hard to put myself in others shoes. I want what I want, when I want it. This is also the impulsivity piece that plays a role in almost all of those with an FASD. Understanding cause and effect plays a role here as well.
- I have weak OT skills. I remember one Thanksgiving I joined the women in peeling potatoes. I peeled one to my Granny’s four. No joke. She fired me after that Thanksgiving. I was given the job of setting the table with paper plates. I am the same with scissors, drawing straight lines, and drawing letters.
- PICK, PICK, PICK: My impulsive behavior lends way to my picking my acne. I know many people pick their pimples, but i really pick. I thought it was normal. After learning how FASD affects the brain and impulsivity, I better understand my constant picking. Fidget toys are helpful.
- I HAVE SHOWN YOU SO MANY TIMES! I need visuals as to how to do certain things. And not just one time. I can remember a task one day, but not the next. A big one is tying my son’s footwear for Tae Kwon Do. The Velcro strap goes the same way, Every…Single..Time. Some days I am on it! Other days, I get angry and frustrated with myself for not remembering, and he has to do it himself. I take my frustration out on him, which isn’t cool. Our brains are so silly the way we can’t always remember things. Oh, and making grilled cheese. I always struggle with how to get the butter on both pieces of bread at once, before grilling them. Some days, a grilled cheese becomes just a cold cheese sandwich.
- JIBBER JABBER: I babbled as an infant. To my hands mostly. Constantly. Now I talk…alot…to people, to anyone that will listen. Someone once mentioned that I was craving auditory feedback. I can roll with that explanation. (Sorry for those poor souls that tune me out).
- If I do A, then B Will Happen: Cause and Effect. A struggle with so many of us with an FASD. An Executive Functioning task that is so tough for us. I think of the immediate outcome of things, not the aftershocks. So, for example, my son had a bowl of water for something. I had his rubber lizard. He had a book next to the bowl of water. Impulsivity got the best of me, and I threw the lizard into the water. Didn’t think about the splashes onto the book. (This is one of my kids favorite stories to tell about my brain).
I am constantly connecting the dots to my life and my brain. I am so happy to have my diagnosis. I now have whys to things that used to be just question marks. Knowledge is truly power.
I Hope Everyone Has a HAPPY and Safe Halloween!
Many of us with an FASD have trouble remembering multi step directions, and learning math concepts. I struggle with these tasks, yet I have been a claims adjuster for auto medical claims for 15 years. Believe me, it took about 3 years to become good at what I do. When I tell people I have brain damage, yet I have been at the same job for 15 years (2 companies), they stare at me. It surprises me too, let me tell ya. I think I know why though. I have had great supervisors and mentors who knew I was a visual learner. They answered my questions over and over again, and I had visual aids that walked me through the steps of the different tasks I did everyday. Of course my co-workers would get irritated that I would forget the steps to paying a bill when I was able to do it the day before. That is why I would rotate who got asked questions!
My job is repetitive in the way we write up claims and handle mail and bills. The type of claims that come in can vary, as can the injuries, but the way the claims system is used is the same on every claim, and the same key strokes get entered EVERY…SINGLE… DAY. Repetition as a part of my job has helped me be successful. I still struggle. 15 years in, and I still make my share of mistakes, but I have a great group of people I work for and work with, and that makes all the difference.
I took it upon myself to research some occupations that rely heavily on repetition, for those of us with an FASD that may be looking to try their hands out in the working world. Below are 10 jobs I found:
- A Medical Claims Adjuster for an Insurance Company (NOT AN AGENT OR A FIELD Rep where one has to go out and physically look at damage and estimate the damage, or sell policies). This is what I do, and many claims adjuster positions have claims systems that are handled in a specific way, and claims handling is repetitive.
- Working in a call center. Answering phones, reading off a script. I get phone calls from billers for medical providers that want to write down if a bill has been processed. They call me, i give them the check number, date it went out and the amount, and that is that!
- Assembly Line Worker. Jobs for those that are able to lift a certain amount of weight and repeat assembly line instructions.
- AMAZON! They have jobs in their warehouses that pack shipment orders! (I thought this would be fun)
- A Grocery Bagger
- Returning items at a store that people have returned
- Package Sorter: Sorting packages at a UPS Facility
- Lawn Maitanence (no big machinery needed, just pulling weeds, watering plants)
- Working in the Produce Section of a Grocery Store
- A Walmart Greeter
So, it has been awhile. Life has been happening. Really good stuff. Just busy. One son entering high school, and one entering fifth grade. We are the second week in, and all is smooth sailing. September has always been a busy month for us. Then, when I was diagnosed with Fetal Alcohol Syndrome, one more event got added. FASD AWARENESS MONTH, my friends. Not just 1 day, or one week. ALL MONTH LONG! 30 Days! Over the years I have attempted to make posts and bring awareness of Fetal Alcohol Spectrum Disorders as they relate to the United States. Check out these stats:
-FASDs are 1.5 times as common as Autism;
-1 in 20 school aged children have an FASD;
–About 430 Comorbidities associated with FASDs;
-70% of foster kids have an FASD;
$24,308.00: According to a 2018 analysis of the economic impact of FASD, the annual cost for one individual, including health care, special education, residential care, and productivity losses.
-$30,945.00: Includes the costs associated with juvenile and criminal justice per person, per year. Due to how an FASD brain can struggle with lack of understanding cause and effect and impulsivity, those with an FASD being involved in criminal activity is not uncommon. (60% of teens and adults with FAS have been in the legal system and 35% incarcerated for a crime).
-$205 Billion: Based on an estimated FASD population in the United States, the annual cost of FASD on society.
The numbers are staggering. The dollars spent are hard to swallow. BUT, THEY ARE THE STATS.
In 2021 and 2022, I took another approach to raising awareness. RunFASD. A Virtual 5K Your Way. People can run it, walk it, bike it, horse ride it. Just to step up and raise awareness for FASDs. http://www.runfasd.org.
I am learning through advocacy that just one conversation can cause ripple effects into the universe.
Who wants to wade in the waters with me?