- Impulsivity: Once me and my son were alone at home and we were talking, but there was also a big bowl filled with water and my son had a toy lizard. So i couldn’t resist the urge to let the lizard take a quick swim, I threw the lizard into the water and it splashed onto a yearbook. This is why you don’t drink alcohol during pregnancy, because your child may splash water onto some perfectly good books. There is also the time our family was sneaker shopping, and one of the sneakers was on display, with its toe JUST HANGING OVER the top of the shelf. Of course i had to push down on it so it would fly across the aisle. (I had only just turned 40, with a younger mindset) https://www.facebook.com/rebecca.tillou/videos/10159630471917468/
- Word Retrieval: I have noticed every year this gets worse. I do not know if it is because the demands of life get bigger, or I am just getting older. I mix up words and have the hardest time thinking of words. My kiddos and husband love to tell the story about how I couldn’t think of the words cell tower and I started twirling my index finger above me in a circle. Then there is the time I told my youngest to go wash his hands in the toilet. Or, at a restaurant once I asked my kids if they wanted to look at a machine (instead of a menu). A tip for this is I use circumlocution, where I describe the item the best I can. If I can’t think of the word dresser, I will tell my husband it is the big thing in the bedroom, with drawers.
- I talk to myself, ALL THE TIME. I mean, I have conversations with nobody as if someone is there. My family knows the events of my day just by listening to me talk in the shower. It is constant chatter. I believe it may have something to do with needing that vocal stimulation, that vocal feedback in my brain. My mom tells me I babbled incessantly as a baby, before I learned to talk.
- I talk loudly. I don’t think I have a hearing issue (my children will tell you otherwise). I don’t seem to understand volume. If I am excited about something, I get loud quickly, and talk fast. (It apparently can be annoying).
- Sensory Issues. What neuro-typical people may not hone in on, my brain does: In a department store, the noise a metal hanger makes as it is pushed around the metal circular platform. I can hear it, I can hear many of the hangers scraping along the metal, I feel the sound in my teeth. The feel of a fork tine on porceline…yep, nope, hate it. Sudden noises, I jump, get startled, and sometimes scream. Noises that other people just push along, as if they never happened. Like a fire alarm, a bell signaling the end of school if it goes off before it should. Any sound unplanned and loud makes me squirm.
- Perseveration: This is a positive in my workplace, because I become hyper-focused on finding and fighting fraud, and I get to go down rabbit holes (not literal rabbit holes), but I get to get lost in all the directions I get taken to find the bad guy.
- Abstract Concepts: My understanding has gotten better with age, but I still struggle. I remember when I was 7 or 8, those street signs that mean go straight, but the arrow is straight up in the air? I never understood how our car was supposed to fly.
- Time doesn’t seem to pass for me like it does for neuro-typical people. I will think of an event that happened 5 years ago, and honestly think it happened in the last year. People don’t age in my brain. I always remember people at one certain age. Then they tell me they are 5 years older than I remember.
- I have difficulty getting to the point of what I am trying to say, when speaking to people. Quick and concise is so not me.
- I am very friendly and want everybody I meet to be my bestie in 1 day. I have gotten better at this (although I do have 566 friends on Facebook, and probably only really know 100 of them).
- Cause and Effect Issues: Being the friendly person I am, if someone needs something and I have it, I will gladly give it to them, not thinking of the consequences (eg: A post on Facebook is asking for a kids winter coat). I respond to the post that I have one and proceed to give them the ONE extra coat I have for my kid for the next year. Not thinking that now I don’t have a coat for next year. I gave away my prescription Acne Medication to my cousin (Retin-A) when I was in high school, because she wanted to try it. I didn’t realize my mom paid money in co-pays, or that you shouldn’t share your prescriptions. I also will pay for meals for people, give them money for vending machines, and never think before I do it. I went to a grocery store on my lunch break a few years back at work, and a coworker asked me if I could pick up a couple things. I didn’t know her that well, but I thought all she was asking for wasca soda and a bag of chips. Nope, she gave me a list of items for her FATHER who was coming into town. I am persuaded easily, and of course I fulfilled her list. Don’t think I ever got paid back either.
This is just a glimpse into my life, my brain. I have learned to live with these “Isms.” They make up my soul and who I am, and I am ok with that. Actually, better than ok. FASD DOES NOT DEFINE ME.
I figured since it is Mother’s Day, I would give people a glimpse into my life as a mom living with a disability. So, here goes:
It has its moments. Ask my kids, ask my husband. My brain works overtime, every day, all week. I know everyone’s brain takes in tons of information every day. Those of us with a brain disability, our brains work hard to comprehend everything thrown at us. Slight changes in schedule can throw us off, make us moody. All that information, those changes, they make us tired. Very tired. I require lots of sleep every night. I need at least 10 hours to not be cranky. It doesn’t happen often, because I am a wife, a mother, and I work full time. There are things to be done. So throw in all the information being taken in every day, changes in schedules, and not enough sleep, and you have a cranky mom. I have learned some tips and tricks to not be as cranky. I try to get to bed earlier. TRY. Doesn’t happen often. I try to exercise every other day, either running or a strength work out. The work out gives me an adrenaline boost, which makes me less cranky, and more apt to handle life. I try to stick to a routine Mondays through Fridays, and I find that helps my children and me get through the week with less temper tantrums, usually mine. Clutter is a constant in my house, and I get overwhelmed very easily when I think about cleaning my house and putting things away. When I get overwhelmed, my brain shuts down, and nothing gets accomplished. This can be frustrating for my husband when I shut down, and the mess is left to him and the kids to clean. I have a limited filter when I speak, so many times I will say things before thinking them through, and end up embarrassing my 2 boys.
There are a few advantages, I think, of being a mom with a brain disability. I have dysmaturity, and am very silly and can really get into building forts and rocket ships and enjoy a good game of hide and go seek and leap frog. I enjoy the novels my 10 year old reads, and we will often read them out loud at night, and honestly look forward to reading the following night to find out what happens (Yes, at 42). I am also the grown ass woman who will be sitting around the dinner table and throw a piece of broccoli at my child because, well, why not? Or at the mall shoe store, see a sneaker on display and tap down on it to make it fling across the aisle (This does not happen often, just when my impulsivity gets the best of me). I enjoy being a mom and being young like them. I feel like I connect better to my children because of my dysmature brain, when it comes to fun and family time.
Are there days when I wish my brain was not neuro-divergent the way it is? Of course. I wish I wasn’t always exhausted at the end of a work day, I wish I could partake in conversations with my 14 year old and my husband over politics and understand what I was talking about. I wish I did have more restraint before blurting out embarrassing words, such as, “Did you fart, Nicolas?” In front of his friends. I realize though, that every single parent out there has things they wish they did better, things they wish weren’t a part of who they were. None of us are perfect. We each try our best every day, and come through for our families and kids the best we know how. We are all works in progress, and I am happy with who I am, and who I am becoming as a mom.
Click on the site! Check it out! The second annual Run FASD 2022 VIRTUAL 5K is coming September 9th through September 25th! Become a Sponsor, make a team, join a team, be a team, make a donation! Pick and choose one, or all of them! Step up awareness of FASDs, the invisible disability that us 1.5 times as common as autism in the U.S, and 2.5 times as common as autism in Canada. Step up, and others will follow in your steps.
Hey everyone. So, my past two blog posts have been a little deep. So, I wanted to talk about a lighter topic. A positive topic. I have been a medical auto claims adjuster for 15 and a half years. I am good at it. Took me a while, longer than most I would say, but I got it down now. And…I live with Fetal Alcohol Syndrome. No two people with an FASD are the same, but I will tell you, ask anybody with an FASD or someone who is touched in some way by FASDs, and they will tell you, REPETITION helps. With LOTS of things. With following directions, learning a song, remembering a part in a book or a movie, learning a new task, like cooking, cleaning, or tying your shoes. In the past couple months I have realized the type of job I have is repetitive in nature, and that in addition to my empathetic nature, repetitive functions has led to my success as a claims representative. Every single day, I turn on my computer, and go into the same 3 systems. I perform the same key strokes for each system every day, and every day I make phone calls to people and ask them the same questions. I press the same buttons every time for the same functions every day. I click the complete button on everything when i am done, and the tasks go away. It took me a bit longer than others to master the systems, but now it is in my memory, and in turn I am a great employee!
Some may wonder why repetition helps our brains. I think back to my kiddos, when they were between 18 months and 5 years old. They liked to watch the same movie OVER and OVER again. Or read the same books OVER AND OVER AGAIN. Yes, for me as a parent it would become boring and mundane, to read a book or watch a show for the umteenth time. I realize though that this is how my kids were learning. They were storing away bits and pieces of the books and movies into their memories, through repetition. Our FASD brains work in a similar fashion.
My kids go to Tae Kwon Do classes, and they participate in Sparring. Well, Sparring has all of this gear to put on. Through my own introspection, I have realized why I am not very helpful getting the gear on and just stand there holding a helmet that goes on last. I only help with sparring once a week. I need a few weeks to learn what gear on first and second and so forth. I asked my son today before we left for Tae Kwon Do the order the gear goes on. He told me, and in my head I realized the bottom half goes first, and then the top portion. I filed it in my brain in a way my brain could remember, and as a result I was successful tonight. This is not to say next week will be the same though. Some days, I will remember clearly. Other days are a little cloudy. Sparring gear has this chest protector called a Hogu that ties in the back. If you ask anybody, they will look at you and tell you, it ties like a shoe, how can you be so confused? Let me tell you how. It doesn’t look like a shoe, and the damn thing is upright, and i am crossing ties across and down. It is not the same as a shoe. So, I had to watch someone do it a few times over a course of 3 weeks, then I tried it a few times over 2 weeks, and now I have it down. To me, you switch out an object for another object, and you are going to lose me. You will have to start over teaching me what is common knowledge to you, and repeat it again and again. Be patient with us, we will retain the information, in our own time. Our brains work, they just follow different paths to get to the same result. So,
R-E-P-E-A-T to me means S-U-C-C-E-S-S.
Hey again. It’s me. The one who talked a little bit about manipulation, and being manipulated with an FASD Brain. Ok, so, there is one more situation I want to share, and it is personal, it is deep, and it is raw. It is also real.
I was 15 years old when it started. The crush. My assistant cross country coach. He was 30. Nothing special to look at, crazy, wild, untamed curly locks, small stature, a runner’s build. The attention though. He paid attention to me, to all the girls. What 15 year old girl wouldn’t like that, right? The crush on my end seemed normal, many of the girls on my cross country team lit up when he talked to them or ran with us. There was a difference though. Between the other girls and me. I was 15 chronologically, but 10 maturity wise. That “innocent crush feeling” those other girls had, mine was intensified. It was like an obsession. I am not saying 10 year olds have obsessive thoughts on their crushes. I did though. I zoned in on his attention, his running with me, his words, his pats on the back, his smile. He became the center of my thoughts, my world. He started substitute teaching in my school, and would occasionally sit at our lunch table and eat with us. I had NO CLUE this was not appropriate behavior for an adult teacher or coach.
The kiss didn’t happen until I was 17. He memorized what classes I had when and where, and would walk by the doorways to them. He would write notes and hand them to me. I was the one who invited him for pizza after a regional meet on our home course. I invited the other teammates also, but nobody showed. He did though. So him and I stayed, and we ate. He told me it wasn’t right, what we were doing, yet he stayed. Now he was 32. We walked out of that pizza place, and stood there, looking at one another. He hugged me, and then got in his car, and drove away. My high school had a bon fire. I remember he had mentioned coming. I saw him, and I remember losing it. I was yelling and crying, because I saw him there. Total obsession like. Not my normal, at all. The next time we saw each other I was invited to his apartment to watch a movie. I lied to my parents, told them I was studying at a friends house. I knew they would think what was going on was wrong, but I had him all to myself. I didn’t think ahead to the consequences of being caught. I was in love! I went to his apartment, and we watched Bed of Roses with Christian Slater. My pick. After, we talked. Then I tried to kiss him. I made the first move. He tried to dodge it, say it wasn’t right, but he didn’t try too hard. He gave in. After that night, everything changed. I became an expert liar, you see. Up until meeting him, I was a great child. Never got in trouble, never lied. I got good grades, I had a good couple of close friends. The obsession took over. He would wait for me in my neighborhood, in his car after school, when we didn’t have track or cross country. He would leave me notes in a park up the road from my house, in a little hollow of rocks by a creek. He would write me love poems. My parents found out about the relationship when I think one of my friend’s boyfriends told the principal. I was walked to the office by the principal, making small talk about colleges. I got into the office, and was taken into this room with a table. A police officer and a social worker were there. The police officer asked if we had been seeing one another, and I said no. The officer told me she had my phone records, and knew I had made calls to him. I unfolded and told her EVERYTHING. She told me I WAS THE VICTIM. I didn’t get that. I didn’t understand what was WRONG WITH A a 32 year old man liking a 17 year old girl. I told my parents everything after school. The officer advised it was either I told them, or they would. They were devastated. I had to tell them in detail everything we had done. This went on until February 11, 1999, my Freshman Year in college. I went away to college, and was still dating him. I had no friends in college, never went out, just pined over this guy who had gotten into my head. He kept telling me age didn’t matter, that he would help me find my birth parents, and he would never leave me. He said my parents didn’t love me, because they didn’t approve of our relationship. I tried a few times to break it off, before college. He told me over the phone he had a piece of glass in his hand from the mirror he had just punched. He kept saying, “No, don’t do it, I won’t do it.” What I saw as a cry for help, a sadness over a girl breaking his heart, I now know was a manipulative move to get me to stay with him.
Yes, I was a teenager, but I was a teenager who didn’t understand boundaries, who didn’t understand right and wrong when it came to relationships. I didn’t understand cause and effect when I lied to my parents over and over again, and got caught. Most would stop doing what they were doing, or be smarter about it at least, so they weren’t caught. Not me. I repeated the same method of lies. “I was studying, I was working, I had late practice.” I had all of his letters in a box, NEXT TO MY BED! No lock or anything! Never thought about hiding them.
He was my first. I remember talking to him from a payphone in my school (yes, it was that long ago), and telling him I wasn’t ready. I remember him saying he had bought all this romantic stuff and we should just try it. He was pushy. I gave in.
It ended when I was a freshman in college, on my terms. My parents filed a court case against him and his relationship with me. My parents tried to get him on charges for sex without consent (I rather not use the other word given audiences), but in Maryland, the age of consent was 18. He knew this, which is why we did not until I was 18. Manipulation, again. The verdict of the court case was he got his teaching license revoked in the state of Maryland. I moved on, and my family worked on repairing our relationship that I had torn apart. I am now 42 years old. I have a 14 year old son. I look on in disgust what happened to me, and how my son is only 1 year younger than me when it started. My brain has matured since then. A lot. I realize now how I was manipulated, how wrong the relationship was, how he “groomed” me.
Why did I decide to tell this story? Those of us with an FASD, our brains have damage. One of the areas that are damaged the most is the executive functioning part of our brains. The part that can correlate cause and effect, the part that controls impulsive, obsessive behaviors. The part that can tell (most times) when another person is not being genuine, or is acting inappropriately. This is my story, this is my truth. I am putting it out there to give others insight into just one’s brain with an FASD. Thank you.
I have been thinking about this topic lately, and I just read a post about a teenager with an FASD, and how he was manipulated by his “friend” to go into a store with a fake $100 dollar bill and make a purchase. So, I took that post as a final sign to write about… MANIPULATION. SUCH a long word for something so hard to detect.
Anyone can be manipulated. You don’t have to have a disability to succumb to it. I have two memories that I now know were manipulative situations. The first one happened when I was maybe 10 or 11? We were at my grandma’s, and there was this neighbor boy, who was about 13. He would come over to hang out, and after pretending to want to play games with me, like pool, he told me we should play a game under the pool table. I was like, “sure, why not?” So under the table I went. Well, he asked me to do things, and I did, because he was my new friend, an older friend, and I wanted him to like me. After it happened, he left, and I went to have dinner with my family upstairs. I ended up telling everyone what happened, because I felt sick over it. My parents assured me it was not my fault, and the last time I saw him was that night, when my dad took me to get ice cream. The kid was riding his bike down the street, looking to come “play.” MY dad looked at him and yelled, “GO HOME, AND DON’T COME BACK!” I never realized that kid had manipulated me until I became an adult.
The second time I remember was when I was in high school. There was a girl on my track team, and one of her friends who was in a couple of my classes, and occasionally we would all eat lunch together. These girls called my house one day, and asked if they could come over and hang out. I was beside myself with excitement, because I had never been asked to hang out with them outside of school before. They came over and hung out for maybe 45 minutes? Then they left to go to a party. My mom found out they left almost as soon as they got to my house, and thought that was strange. I told her they had a party to go to. My mom looked at me and told me, “They used you. They used YOU and THIS HOUSE and US. They told THEIR parents they were going to hang out at OUR house, but really are now at a party.” I didn’t want to believe it. I got mad at my mom, and stormed off. I thought about the events, and later that night, my mom came into my room to talk to me about what had transpired. I realized in that moment I had been taken advantage of. I remember crying and yelling, “Why would they do this?” I was so hurt. It was a horrible feeling. I really thought they were my friends. I called the one girl the next day, and told her how upset my mom and I were at the situation. The girl and her friend wrote my mom and I each an apology letter. So, I guess something good came out of it , but i remember to this day how my heart felt. Looking back at these moments in my life, I realize my FASD contributed to me being easily manipulated. I am 42 years old, and still find myself in situations where I can be easily manipulated. I see the signs now, and I usually run events and situations by my husband , best friend, and/or my parents. I have gotten more aware of bad situations as I have aged, and matured.
For those with an FASD reading this blog, stop and think before starting an activity. If there are people you know from school, but don’t really hang out with outside of school on a regular basis, be careful. Just always take a moment or ten to think about the situation you are in, or may be in. For those CAREGIVERS out there to those with an FASD, drop me a line, a question, a comment. Keep doing you, be on the alert, and keep lines of communication open with your kiddos.
Community is the foundation of togetherness. It ties families together from all different backgrounds, with common goals of uniting families, creating friendships, learning about one another, and having one another’s backs.
There are thousands, if not millions of communities worldwide. In my walk with Fetal Alcohol Spectrum Disorder, I have discovered an INCREDIBLE COMMUNITY, with mini communities in nooks and crannies. I have been in awe, and inspired by the communities I have read about and met through stories, interviews, and most recently, the first annual RunFASD 5k that took place in September of 2021. So many communities in the United States banded together and ran, walked, and biked 3.1 miles to educate others about FASD. There were doctors, educators, parents, and children who came together to raise awareness of FASDs.
The FASD community is so incredible. It is created with communities within communities, which are made up of awareness, a desire to learn more and to do better. They have grit and tenacity. They reach out to one another, parents create friendships, and children are introduced to other children that have FASDs. I am blessed to be immersed in the FASD community. When I first got diagnosed, I immersed myself in websites to swell my brain with FASD information. I perused Facebook for FASD groups, and I believe Flying With Broken Wings was my first online FASD community. Everyone was welcoming, they listened to my story, they answered my questions regarding my quirks in an FASD world, and I learned skills and coping mechanisms when I have sensory overload. I have learned there are FASD communites all over the world, and sub communities within those. I have noticed that no matter where in the world an FASD community is, no matter what language they speak, they are each after the same goal. Learning new ways to support those with FASDs, and being there for one another when it feels like they are at the end of their patience.
Where I live, there is no FASD community. Where I live, FASD is not well known. It is not taught in detail to educators, pediatricians or OBs. I want to change this. I am one person, but a community begins with one. One person with a desire to have others join them for a common cause, a common belief. I have this desire, I just have to take a deep breath, and take the first step. I am reminded of the quote from Field of Dreams: “If you build it, they will come.” I hope so. Here is to all those FASD communities working together, helping one another, leaning on each other. Here is to new communities being created, one open mind at a time.
1. A pregnant woman drinking a glass of wine or 1 beer a day is ok throughout her pregnancy.
MYTH. The CDC STATES THAT NO AMOUNT OF ALCOHOL IS SAFE FOR BABY IN UTERO, AT ANY TIME (www.cdc.gov, 2018). Most women do not know they are pregnant until 4-6 weeks after conception. The baby’s brain begins developing in the third week of gestation.
2. 50% of individuals with an FASD have facial features of an FASD.
MYTH. Only 5-7% of those with an FASD have facial features, and sometimes as one grows and matures, the facial features subside. A couple facial features that are common are a flat, thin upper lip, and palpebral fissures in the eyes (distance between the left and right corners of each eye, which can give an optical illusion that the eyes are far apart from one another).
3. FASDs in the United States and Canada are more common than Autism.
TRUTH. FASDs occur in 1 out of 20 school age children in the united states. FASDS are 1.5 times as common as Autism in the United States, and 2.5 times as common as Autism in Canada. (www..fasdunited.org). 16 million people in the United States have an FASD.
4. FASDs are Curable:
MYTH. FASDs are NOT curable. They are irreversible brain damage that occurs in utero. They are the ONE brain disability that is 100% PREVENTABLE.
5. The annual cost for an individual with an FASD in the United States is around $31,000.00.
TRUTH. This cost includes the costs incurred for those in the criminal justice system, which occurs due to those with an FASD having trouble with impulse control and understanding cause and effect. The part of the brain that controls these functions is the Frontal Lobe (Executive Functioning) (www.proofalliance.org)
- A pregnant woman drinking a glass of wine or 1 beer a day is ok throughout her pregnancy. (MYTH or TRUTH?)
- 50% of individuals with an FASD have facial features of an FASD. (MYTH or TRUTH?)
- FASDs in the United States and Canada are more common than Autism. (MYTH or TRUTH?)
- FASDs are curable (MYTH or TRUTH?)
- The annual cost for an individual with an FASD in the United States is around $31,000.00. (MYTH or TRUTH?)
TYPE YOUR ANSWERS IN THE COMMENTS SECTION, AND TUNE IN TOMORROW FOR THE ANSWERS!
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