• Doin It Up in DC!

    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!

  • Classroom Cues

    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.

    1. “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?
    2. “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.
    3. 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.
    4. “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.
    5. “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.
  • Tenacity

    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

  • FASDisms

    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😆

  • I HAVE LEARNED…

    Since my FASD diagnosis, I have learned about:

    1. 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.
    2. 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
    3. 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.
    4. 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.
    5. 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.
    6. 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.
    7. 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.
    8. 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.
    9. 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).
    10. 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!

  • Opportunity Is Knocking

    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:

    1. 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.
    2. 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!
    3. Assembly Line Worker. Jobs for those that are able to lift a certain amount of weight and repeat assembly line instructions.
    4. AMAZON! They have jobs in their warehouses that pack shipment orders! (I thought this would be fun)
    5. A Grocery Bagger
    6. Returning items at a store that people have returned
    7. Package Sorter: Sorting packages at a UPS Facility
    8. Lawn Maitanence (no big machinery needed, just pulling weeds, watering plants)
    9. Working in the Produce Section of a Grocery Store
    10. A Walmart Greeter
  • Steppin’ Up and Out

    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?

  • SLEEPING BEAUTY

    I remember being invited to sleep overs when I was in elementary school, even middle and high school. I was always one of the first ones asleep, and one of the last ones to wake up in the morning. I would sometimes try to stay awake late with my friends, but it was no use. If we were whispering with our heads on our pillow, I was out in ten minutes. Twenty at the most. When I had a sleep over at my best friend’s house, I always rolled over and groaned when her mom would come in at 8 am to tell us breakfast was ready. I could always sleep until at least ten AM. I did sleep in when I had no plans. I was the teenager that would wake up around ten or eleven on weekends. The neighborhood kids would already be outside riding bikes or making forts in the woods. I never missed the bus for school though. My internal clock knew I had to get up early Monday through Friday. I bet my parents loved the fact that I never argued about bedtime.

    I still love my sleep. When my husband drives us to his parents 40 minutes away, many times I will konk out. I think the drone and vibration of the car definitely helps. I struggle to get up in the mornings. On weekends, my normal wake up time is 10:30 or 11:00 AM, and I STILL wake up tired. I could easily sleep all day. Once I am up and moving, my mind and body wake up. I could still nap though, even if I got 12 hours of sleep the night before. Friends and family have suggested maybe I am getting too much sleep. I don’t think that is it. I sometimes wear a fitbit to bed, to track my sleep patterns. I don’t think it accurately tells me when I fall asleep (it says i fall asleep at 2:30 AM), but the sleep stages it tracks from 2:00 AM until when I wake up I believe are accurate. The most recent tracking stated I slept from 2:30 AM to 9:20 AM, with only 59 minutes of deep sleep and 50 minutes of REM. 4 hours and 25 minutes was light sleep. Sheesh! I also suffer from night terrors, which started in graduate school. When I am stressed, they are more frequent. They disrupt my sleep for sure, in addition to my husband’s sleep, given that I hit him and scream blood curdling screams in his direction. I went to see a sleep doctor who had me stay over to have a sleep test completed. They told me I had a strange sleep pattern, but I did not have sleep apnea. I never followed through with this study, because they wanted to put me on a CPAP machine, and I didn’t think that would make any difference if I didn’t have a breathing disorder.

    Now that I know I have Fetal Alcohol Syndrome, and that sleep can be affected by FASDs, maybe my brain damage affects my sleep. I asked the sleep doctor if it can be my FAS, and he said maybe, but he didn’t talk anymore about it. Probably because he had no idea what FAS was (Just my opinion.) I have done some reading on sleep patterns with those with an FASD, and my patterns definitely resonate with many of those with an FASD (wake up tired, sleep terrors). I definitely think there is a correlation, but many others just think I am tired…all…the…time. Well, yes, I am tired all the time, but there is a reason. I do well if I keep busy. I am able to exercise and take care of my kids and work at a computer job 40 hours a week. So that is good. Think about it though. Those of us with an FASD, our brains work so hard to make sense of this world. Our brains get overstimulated easier than those without brain damage. Overstimulation makes us so tired. Trying to remember cause and effect of daily activities, and multi step directions is exhausting. Trying to go with the flow in a family unit is exhausting for our brains. So, I definitely think my sleep issues stem from my Fetal Alcohol Syndrome, and I am hopeful to find a solution. If anyone has ideas for me to try, let me know! I am listening! (Unless I am sleeping lol.)

    Sweet Dreams, my friends!

    This is me in the morning.

  • FASD FORWARD

    Ever since I was about 12, I have always felt like I move in fast forward motion to complete a task, while everyone else takes their time. I can tell you I had this one friend who lived up the road from me. We were best friends. We would meet half way on the street, and then go to one of our houses to play. I remember I would go to her house, and we would want to play a board game. Or play pool. She would take her time going to the basement, opening the closet door, and finding the game. She would take her time setting it up for us to play. Same with setting up her father’s pool table for us to play pool. Never in a hurry, never spastic. Never like me. I remember watching her, wishing I could slow my body down when I wanted to do something. I had no slow motion. Only fast forward. I am like this today also, at 42 years old. I try to tell myself to relax when taking a shower or bath, and take my time. Seven minutes later, I am out of the shower. Maybe ten if I lather up my hair really well. I filled a bath for myself after my first half marathon, and told myself to soak in the bath salts, and just BE. Um, let’s see, I think I stayed in there 15 minutes? My brain is on constant fast forward. I can hear my brain making that whirring noise that the cassette and video tapes used to make when we would press FF (Fast Forward for those not born in the 70s or 80s, and have no idea what a cassette tape is). It is exhausting, to have a brain like this. When I would hang out with my friend, I tried to take my time doing things, but it felt unnatural, and I was at my most comfortable stepping up the pace. I guess that is a good trait to have as a runner. So there’s that. I don’t have a slow speed. Even when I sleep, I flail around and smack my husband in his sleep. So, to those parents and guardians who are taking care of someone with a Fetal Alcohol Specturm Disorder, and you just want your kids to slow down, please know we would if we could. We may even try, but trying is exhuasting. Our brains are not faimliar with slow motion. To those living with an FASD, I get you, I hear you, as you buzz by me like a wound up match box car let loose.

  • Congratulations! You Succeeded!

    Yesterday my oldest graduated from 8th Grade. The middle school did this very nice,

    and chill ceremony.  I have been seeing and commenting on many posts of children graduating from Kindergarten, 5th Grade, 8th Grace, and of course, High School.  (I don’t have many friends with kids in college yet, so at least I still feel somewhat hip and young lol). All of these graduations got me thinking about those children and teenagers with an FASD, or any disability or academic struggles.  I think instead of using the words “You Graduated” which has been used for years and years, maybe we start saying, “You Succeeded!”  Or, “You are a success!” 

    grad·u·ate– successfully complete an academic degree, course of training, or high school; a person who has successfully completed a course of study or training, especially a person who has been awarded an undergraduate academic degree.

    suc·ceed: achieve the desired aim or result.

    suc·cess: the accomplishment of an aim or purpose.

    I know to some of those reading this I may come across as one of those that believes everyone should get a trophy, and that there are no winners or losers. I am not one who believes that.

    I just started thinking how the word graduate is so much more objective, with boxes to check, and numbers to meet.  Succeed is subjective, the definition of success looks different for everyone. For those of us with an FASD or a disability, success for one person may look like running out of a classroom 2 times a week instead of 5 because of impulsivity, while being able to follow 2 step directions 70% of the time is the definition of success for another.  So while a child may not check all the boxes to “graduate,” Many children, if not all, succeed. I went to Graduate School for Speech Therapy, and they failed me. I didnt have a diagnosis at the time. They tested me for a learning disability and told me something was off but couldn’t decipher what it was. I don’t think anything would have changed if I had a diagnosis though. They probably would have failed me anyway. They never tried to help me with my report writing. They never helped me understand how to teach children speech and how to adapt to their needs. I asked for help, but I myself wasn’t sure how I would learn successfully. Looking back, I definitely succeeded,although I didn’t graduate. I succeeded in the classroom setting in rote memorization of upper body anatomy. So, I consider myself a success at graduate school. Some components of it anyway. I think success can be, and is met at every level of schooling for those with a disability. Success looks different for everyone, and that is a beautiful thing. So my friends, take a look at your child and their schooling. Ok, maybe they will not graduate as defined by the school, but they damn well succeeded, and that counts for so much! Sometimes it counts more than graduating. So children and teens, go forward and succeed. YOU GOT THIS.