ADULTING WITH FASD
I am not one for cliches, but I am going to quote one here, because it is perfect. "Hindsight is twenty twenty."
I went through my childhood, my teen years, early 20s and 30s, into the present, seeking out certain behaviors, because they feel good (No, I am not talking about that). I am talking about SENSORY SEEKING BEHAVIORS, and SENSORY SENSITIVITY. Take my love for weight on me. Here is an example for you: When my brother and I were growing up, we had these big chairs that were soft. they folded into chairs, and folded out into beds. Some of you may know that as Flip & F _ _ _s. (college term). We created this game called,Meatball Sandwich. ONe of us would flip the chair out, turn it upside down, and the other one would crawl inside. Then the chair would be folded onto us, and the other person would jump on it, singing in a melodic tone, "Meatball Sandwich." I never realized until after my diagnosis with FAS how much I enjoyed being jumped on. My brother was 4 years older than me, so he had weight on me. I sought out that weight on me. To this day, I still seek out weight. I have retired the meatball sandwiches for weighted blankets, and my youngest walking on my back. These center me, it feels so good! If I feel tense, and like my senses are all over the place (kind of feels like every muscle group inside me wants to dance and be jittery), A weighted blanket works wonders.
Another behavior I have had since childhood is rubbing my ears. I do it when I am tired or bored. The softness and smoothness of them, and i like to twist them around. I know it is weird and quirky. They are my security blanket. I can't lose them so that is good.
While I am discussing sensory issues, there are a few items and sounds I dislike. I hate Goop and slime. My child likes it, and I struggle to touch it. It feels icky to me. I am not a big fan of wings either because they cause a mess on my hands. I can't handle eating oatmeal. The texture makes me want to gag. Weird thing is though, I can eat applesauce? And Grits. OMG, no thank you. I tried them the other day. Hard and soggy in one? Disgusting to me. I gagged, again. Eggs. I don't care how they are cooked. The texture of any egg, any type, makes my mouth cringe. French Toast also. I don't do soggy well. As far as sounds go, sudden and quick loud noises I am not used to or am not expecting can make the Bibinski Startle Reflex come out. I jump and my hands jerk. The same thing newborns do when they awake sometimes. I love how newly packaged items feel when you take the plastic off. It is so so satisfying to my sense of touch. It feels so complete.
So, those are some of my main sensory matters I have. You all out there with an FASD, tell me what some of your sensory stories?
I close my eyes and am transported to that doctor's office. The office of the pediatric geneticist who answered my "whys." I remember walking into that small, sterile room, and seating myself on the patient table. The paper I sat on crinkled loudly as I nervously crossed and uncrossed my legs. laughed nervously. My eyes wandered around the room, taking in the shelf with big doctor books. My gaze stopped at the two chairs across from me, metal framed with thin cushions, and there sat my mom, my cheerleader, my supporter. She was hopeful for a diagnosis also. It was about an hour and a half after we arrived when we heard the door click, and in walked the geneticist. Her smile was genuine, and she was happy to see me. "You are the first adult I have ever seen for a possible Fetal Alcohol diagnosis." She walked over to me in that moment, and had me take off my socks and shoes. She then began asking me questions about her. My birth mom. "Did she confirm she drank when she was pregnant with you? Would she confirm it with me?" I looked at her, and calmly stated, " Well, she can;t because she died in 1999." I next proceeded to tell her that I had spoken to coworkers and acquaintances of my birth mom who stated she always had a Scotch and water in her hand. She was always drinking. I advised her of the lady I had spoken to who was present the night of my birth, who had revealed my birth mom had been drinking at the bar before going into labor. After listening to my tale, the doctor grabbed a tape measure and measured my head circumference. It is in the 3-10th percentile for my age, which was 34 years old. She then took a look at my feet, which are extremely narrow, long, and flat. She asked me to stick out my palms, and when I did, she traced a hockey stick formation on both hands, which can be indicative of an FASD. She noted my thin upper lip and long philtrum, and shorter distance than average adults have between one corner of an eye to the other (palebpral fissures). She wrote down her observations, and then asked me about my social, emotional, and academic struggles. I explained I am a person who makes fast friends, sometimes too friendly with moms I just meet, inviting them over for dinner and trying to get their phone numbers. I tell people I barely know my whole life story within an hour of meeting them. Many would consider me an open book. I would say emotionally I am about 10 years younger than my actual age. I am extremely impulsive at times with money and my actions. I have acted on an impulse because it felt good emotionally and physically in the moment, and never thought of the aftermath. I struggle with cause and effect when it comes to learning not to repeat the same mistake twice. Cause and effect is abstract and my brain doesn't like abstract concepts. I am a sensory person, and can't stand the texture of oatmeal or eggs. I have a vivid memory of textures from when I was three years old until now. My sense of touch is the strongest out of all of my senses. I never forget what something felt like. I have a baby's startle reflex, and sudden loud noises put it into motion. When it comes to academics, I do well in the classroom, where rote memorization is the key to a passing grade. I falter when I am asked to teach others a skill, and not everyone learns the same. I struggle to modify my teachings. I cringe when I have to write specific reports and outlines. I can try to edit them multiple times, and the paragraphs may still be jumbled and not flow. I am unable to read maps. I can make it to a destination one day just fine, but forget how to find my way the next day. These difficulties almost ended my undergraduate program in Speech Pathology, and they did end my graduate career. I struggle to read an analog clock and rulers. I don't like word problems, Mixing words with math, why would ANYONE think that is a good idea? The doctor was taking notes as I spoke, and then she paused. She looked up from her note pad, and turned to look at my mom, who had been sitting intently, interjecting facts of me as a baby and growing up as needed. "I can't write down a diagnosis of Fetal Alcohol Syndrome, because we don't have verbal confirmation from the birth mom. Although, given the photos of you as a baby, Rebecca, your health history with failure to thrive and constant ear infections and bronchitis for the first 18 months of your life, and my findings today, I would say you have at a minimum Fetal Alcohol Syndrome." I couldn't hide my smile. I finally had a diagnosis for my struggles, my quirks. My mom smiled and nodded. The doctor then told me to be mindful of medications I take, that because of the prenatal alcohol exposure I may rapidly metabolize drugs and require higher doses for effect. I do see this with allergy and headache medication. The doctor thanked us for coming in, because I had given her hope for the children she sees who have an FASD and my mom had given her hope for those childrens' parents. "You did a great job raising her in a structured, loving environment. She thrived. She is a beautiful, successful woman." My mom looked at the doctor and replied. " We didn't know any different. We didn't know what was going on, we knew she had some struggles, but we raised her the way we raised our son. Unconditional love." My eyes became wet when my mom spoke these words.
The doctor then spoke about what could have been had my birth mom not drank during pregnancy. "You may have been a math whiz, a cohesive report writer. You may not have impulse control issues." All of this was common sense, right? I did not expect to experience GRIEF, but grief came out of hiding and found me. For the next few months, and every once in a while even today, I get angry at HER. At my birth mom for drinking. I could have been SMARTER, DAMMIT! I tell myself this, usually when I am having a hard week at work, when I have made more than my share of mistakes. I let myself have these feelings. I let myself grieve what will never be. I do make sure that I don't stay in this place though. Through learning about alcoholism, I have leaned it's a disease. I know my birth mom didn't intentionally harm me. She was trying hard to forget her past as an orphan and a foster child. Alcohol was all she knew. I am learning to hate the disease for decisions that were made, not the person. When I grieve, and there is no pattern to when, I yell in my head at her for being so stupid. I cry for the struggles I have had in my life, due to my differently abled brain. I cry for the people I have hurt due to my impulsivity and my hard time learning cause and effect. When I feel I have grieved what was, and what could have been, I wipe my tears, and I feel stronger. I know there will be more grieving, but through grief comes clarity. I am able to see clearer how far I have come with my impulsive nature and techniques I use to write reports. I want you to know, GRIEF IS NOT A BAD WORD. IT IS NOT A BAD ACTION. Through Grief, one can heal, and start anew. Remember, you may have an FASD, but FASD DOES NOT, AND WILL NEVER HAVE YOU.
Running has been an integral part of my life since I was 12 years old. I am now 41. If someone were to come up to me and ask me, "Why? Why do you Run? Why do you push yourself until you are out of breath, sweaty, and your muscles and joints feel like they are about to come unhinged," my answer would be, "Because it regulates my body." I can see the look of confusion and doubt crawl over their face. Just run with me for a bit. I will explain before the end of this blog.
Now don't get me wrong. I don't know anyone who LOVES feeling the pain and the extreme exhaustion after a run. It is DURING the run though. I feel the exhaustion creeping in, but somehow it rallies me. I push through, and I finish. The feeling after, for hours after, is so worth it. My adrenaline kicks in, and stays in me for an hour or so. I feel giddy, and happy with myself. After the adrenaline wears off, my nerves calm down, but I remain calm, and my attitude towards the stressors of life mimics my nerves. Running helps regulate my body, both physically and mentally. Everyone reaps the benefits, not just me. Just ask my family. "Zen Mommy" is a welcome mommy. For me, having an FASD means my brain is constantly thinking when the kids piano lessons are, what clothes have to be washed, how many tasks I have left at work, when is the last time the dog went out, and why is there is a cool breeze coming from the floor? All of these thoughts are intermingled into one another, and sometimes I get mixed messages. Sometimes I may wonder when the last time is the dog had piano lessons, and what tasks have to be washed. Running calms my brain, and settles these thoughts to fire slower, one at a time. Running is MY BODY's REGULATION. I ask you parents/guardians, and those with an FASD, what are ways you regulate your body?
I understand the importance of finding techniques to regulate one's body with an FASD. I had a dream a couple years ago, pre Covid, to create a Walk/Run for FASD. I looked into the logistics, and it was a bit pricey, and too overwhelming to take on my own. So, enter the Covid Era, and Virtual Races took off. Literally and figuratively. During an interview on FASD HOPE's Podcast in January 2021, I was asked what dreams I had in the next 5 years. I said I wanted to create a 5k for FASD. Well, my dream has come true. With the help of my friend Jennifer Wisdahl at NOFAS, and Natalie Vecchione at FASDHOPE, this Virtual 5k WALK/RUN is happening. My husband coined its name: RunFASD. Check out the details below, and sign up to raise awareness of FASD. Join us September 9-15, 2021 for RunFASD, and feel what it feels like when we with FASD REGULATE OUR BODIES.
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/ˌiməˈto͝or,ˌiməˈCHo͝or/: having or showing an emotional or intellectual development appropriate to someone younger.
Many with an FASD are called IMMATURE. I AM IMMATURE. Many of us have two ages. Our chronological age, and our mental age. Usually our mental age is half that of our chronological age in respects to different areas in our lives. I have listed 10 areas in my life where you can see the disparity in the ages. Take a Look:
I was listening to a Podcast a ways back, and this sentence caught my ears: Meet the child where they are at. I immediately voice recorded that statement into my phone, for later use in my blog. Well, here I am. Here we are. This blog is for parents, educators, doctors, and all those who interact in some capacity with a person with an FASD. So many times in society, I read stories about how someone's child is not doing well in class. They are not following directions, they don't finish their work on time, and their ability to organize the inside of their desk is minimal at best. This child goes home feeling defeated. This child's parents and or guardians receive an email from the teacher, explaining how the teacher is worried about the child moving to the next grade, and how they are slowing down the rest of the class because they have not finished their work yet. Come on, I know you all are nodding your head because you have read an article explaining this issue, or this is your and your child's life.
In my experience, no child learns the exact same way. No child is an expert at organization. I remember being the second grader who was still writing an outline for my book report and the others in my class were well onto their rough draft of their report. I remember feeling rushed, hot tears filling my eyes as I looked down at my eraser stained paper, There were still lots of blanks to be filled in on that outline. I also remember my teacher. I remember her going around the room, looking at our progress. When she came to me, she saw the eraser stains, and she saw the almost non existent eraser. She stood next to me, and looked over my outline. She asked me what my report was about. Let's say it was about Sharks. She wrote Sharks on the top of the outline. Then it was time to fill in Roman Numeral I. My teacher explained the job of the Roman Numeral I was a main idea about sharks. She then wrote down, "HABITAT." She continued to fill out the first part of that outline, with MY TOPIC, not with the sample she had rushed through with the class earlier on the chalkboard. I remember my seat was on the side of the chalkboard though, and I couldn't see it. I was not one who had the confidence at 8 years old to go up in front of the board and review it on my own. Not to mention I would begin to forget what the outline looked like as I was walking back to my seat. When my teacher had finished with the first Roman Numeral and its subheadings, she asked if I could try Roman Numeral II on my own. I think I told her yes. I felt sheepish asking for help, but this teacher MET ME WHERE I WAS AT. Most of the other kids in my class took two looks at the outline on the board, which was about some generic topic, and they were able to transfer the teacher's outline to their own topic. FASD brains struggle transferring directions from one task to another task. To this day I hate outlines, but I remember my teacher, who took time to meet me where I was at. I don't remember how I felt when I went home that day, but I bet you I felt successful. I probably started the rough draft of my report at home, and that was ok. I remember my teacher would give those of us that needed it extra time to finish assignments, and the other children would be able to read quietly. Again, she met me where I was at.
Meeting Them Where They Are At is so important to cultivate a sense of success and confidence in children and adults. About seven years ago, I worked at an insurance company. I was a grown ass adult. I was 34 years old, I had 2 children and a husband, a house, and a full time job. A job I rocked. I had stellar reviews for 9 years in a row. Then it happened. SHE happened. A new supervisor who DID NOT MEET ME WHERE I WAS AT. I understand when you become an adult and enter the real world with a job where others depend on you, including coworkers, supervisors and customers, there are expectations you should strive to meet. I get that. Yet, as an adult with Fetal Alcohol Syndrome, some of the expectations were very difficult. One of my job functions was to write out in concise terms how much money I needed to pay a medical claim and why. I can be wordy. I can write a paragraph explaining a point that can be summed up in a sentence. The struggle is real. The supervisor I had though would deny my wordy requests, and the first words were always, "Rebecca, what the? I don't understand your point." My point was in my request, just embedded. Deeply. So I would go back to my desk, and rewrite the request. I would take out extra words, add in others, and resend. Again, she would call me over to her desk. "I don't understand why you can't be concise." OK, maybe you can help me be concise? I knew she was a busy person, and unfortunately once you are an adult many times your superiors and even your peers assume you should be able to write concise reports. Only I couldn't. I know when you are an adult having a supervisor meet you where you are at is asking ALOT, because dammit, you are an ADULT NOW! There are supervisors out there though that will help you. She was not one of them. I became my own advocate in that situation. I went online and searched for tutorials on writing concisely. I looked up key words to use. I even asked my peers. Nothing was good enough for my supervisor. My confidence was shattered after that supervisor. I ended up leaving that company after about 10 years.
I have been at my current job for 5 years. My first supervisor I had, him and I did not start off strong. We butted heads. He would return my authority requests for more money time and time again. I would see him take his glasses off and rub his eyes. I would see him run his fingers through his hair. Many times I would be in tears, having to redo the same task for the fifth time. I was struggling to keep up with the work, and to notate my files to his liking. I was struggling to organize my desktop in a way that was efficient for working. I had 5 screens open at once on any given day which was normal, but how they were organized was not efficient. I had to click on multiple screens to get to the one I used the most. My supervisor actually made note of this. He had my peers help me organize my desk top. It helped so much. He got someone to help me be successful. Then, one day, him and I had a meeting. It was a normal meeting he had with each of his employees once every other week. In this meeting on this particular day, he was asking what strategies I had to make my work more efficient. I started crying. I decided in that moment to come clean. I told him about my FASD. I didn't want to reveal it, because I had told my old boss and she ended up using it against me. I think she felt I would never succeed because I had a disability. My new supervisor though? He looked at me, and he goes, "That sucks. I am sorry." I told him it is why I take longer to get things than others. It is why I am a visual learner, but I need to see things over and over again before it clicks. I thought I would walk out of that meeting and start packing up my desk. Instead, my supervisor emailed me a list of his day, how he breaks up different tasks throughout the day to be efficient. He took the time to understand, and Met Me Where I Was At. I am 5 years at this company now, and soaring through!
I know it can be time intensive to Meet Someone Where They Are At, but it can, and usually does lead to success by that person in whatever endeavor they are pursuing. That success is thanks to you. So please, take time to understand.
Ok, we have ALL heard it. Either from your cell phone, or your Garmin. You think you are following the directions being told to you, but then you hear it. Sometimes it is a woman's voice, sometimes a man's. Sometimes they have an accent. "Rerouting, Rerouting..." Dammit. I swear I was going the way the GPS told me! So, I have heard Rerouting SO many times, I think I have the voice down to a science. Maybe when I retire this will be my side gig. The voice of GPS.
I have a brain disorder. This makes me more susceptible to GPS-Garmin-Cell Phone lady. OH YES. Now, while many people hear this phrase when attempting to go to a new place, I am notorious for "Rerouting, Rerouting" coming over my phone as I attempt to leave the parking lot of my children's Tae Kwon Do Dojo. A place I have driven to and from many times, sometimes three times a week! Some days my brain remembers and I turn the right way home, but sometimes I turn the wrong way. With an FASD brain, we tend to forget things we have practiced many times. I honestly don't know where I would be without GPS. If GPS could have emotion in her voice though, I think she would sound extremely irritated. Rightfully so.
Just tonight I was in the mall with my youngest. They had started locking the stores down, because the mall was closing. I went into panic mode, because I did not know how to get out of JC Penny back into the mall. I went up to a clerk and asked in a panicked tone, "Can you unlock the door to the mall? I have no idea how to find my car if I have to go around the building outside!" The lady stared at me, and without blinking, told me, "No, but you can go over there and down the hallway then turn again and there is a door to the mall." I had no idea where she was gesturing to. My heart started to speed up. Thank goodness my 9 year old was with me and I took his lead. We made it back to the inside of the mall, and from there I was surprisingly able to backtrack to the car. I think the fact I had been to the mall every day since Sunday AND had parked in the same lot helped me to not get lost this time. It is a crap shoot, really. I could have still not known where I had parked the car. I never know what my brain will remember, or when. I have had many detours in my life due to getting lost. If you ever want to go on a driving adventure with a chance to see new places, or maybe places I had JUST driven through minutes before, come along with me. I promise to make you laugh, and possibly open the car door and jump out, knowing you have a better chance of finding your way home on foot. #FASD
Growing up, my mom loved to shop. I mean...LOVED TO SHOP. To many mothers who have daughters, their daughters were probably begging their mom to take them shopping with her. Not me. Nope. I used to accompany her for back to school shopping, or shopping for a pair of dress shoes for me (triple A, banana peels, very long) . The dress shoe shopping took three to five hours. Yes, no joke. They usually had to special order my size, and that was only divulged to us three hours in once we found a pair I would wear. It was painful, as much for my feet as for my mother and me. Shoe shopping was an all day affair, and usually included driving an hour to Nordstrom's in Tyson's Corner Virginia. it was here they had the biggest dress shoe collection for my narrow feet. They were also the most expensive. I remember my mom showing me shoes, and I would say sure, why not? I never had a definite opinion, and I rarely picked out ones for myself. Now, this could be because I was young, and didn't care much, but looking back on my childhood, I have other reasons. The first is that decisions are not easy for an FASD brain. That damn executive function part of the brain. It gets all befuddled. Another reason: As you all will recall, department stores have big, bright lights that shine down on the merchandise and if you look up, your eyes get squinty and you get slightly dizzy from the brightness. At least I do. For one with an FASD, these bright lights are like a flashlight shining directly into your eyes, into your overstimulated, tired body. The lights made me cranky and uncomfortable. The amount of shoes, all of the rows and rows of different sizes, and buckles, and ties, and heels, and pat and leather, and suede. Overload on my brain. At the time, my mom thought of my non caring attitude as just not being into shopping. Yet, in reality my brain didn't like all the lights and sounds and smells that came with shoe shopping. I can remember the smell of the leather as we walked up and down the aisles. I remember the feel of the shoe as the salesman pushed it onto my foot, the first pair, then the seventh, then the tenth. All of my senses went into overdrive. To this day, I despise shoe shopping. I love sneaker shopping, because those shoes are more forgiving on my banana peels, and I can find a pair within twenty minutes. The lights and smells still bother me, but I can handle it for short spurts.
Now, let's talk about Back to School Shopping. My mom will tell you, I was definitely not the girly girl, lets shop til you drop daughter. I was the, "Yea that looks good, can we go now?" daughter. School clothes shopping could take up to three hours. Maybe more, if we went to multiple stores. Clothes shopping for my brain was similar to shoe shopping. Only, there were so many more textures, colors, and sounds. People moving the hangers, the smell of the different fabrics. The smooth texture of silk pajamas and then the fuzzy feel of winter pajamas. The feel of the bottom of footie pajamas. So much to take in! I would go into shutdown mode whenever I shopped with my mom. Neither of us understood why, we both thought I just hated shopping. I didn't mind shopping, but my BRAIN hated shopping.
I shop today, and I still have shut down moments. Being older and wiser now, I know lists are a must. I look at the list, I go to the section I am looking for, get what I need, and get out. Sometimes. Of course, my FASD brain is easily distracted, and I may or may not spend time in random sections finding things I do not need, but that are so fun! The lights still bother me, but I am usually not in a store for hours at a time. Forty five minutes to an hour is usually my max.
This brings me to an issue I have. Oh boy, this issue can get out of hand. See, I have this problem with money and math. I do not add up the amount I am spending correctly in my head. I try to estimate totals, and I am usually off by seventy-five or one-hundred dollars. No joke. Why, you ask? Well, I don't math well. Never have. I remember a trip I took to Target around Christmastime. I was so excited. It was just me. No husband, no children. Just me, my impulsivity, and stellar math skills. I kept picking things up and putting them in the basket. I glanced at the prices, and my brain looked at three prices, and then forgot to add it to the other ones. "Three-hundred is your total, Ma'am." I obliged, ran my card, and came home. I showed my husband everything I had gotten. His eyes widened, and he asked why I had bought 5 shirts and 5 pairs of pants for each child. He asked why I had bought duplicate blankets. I told him I had done very well at the dollar bins too. In case you aren't aware, dollar bins can add up to fifty dollars easily. So, together we weeded out about half of the stuff I had bought. We brought it back. We then decided we would Christmas shop together, and only together. We never had a discussion about shopping on my own for just something to do. So, one day I went into Marshall's, and they had ten dollar NIKE shirts for children. So I bought about ten. They were only ten dollars! I cashed out, and went to my car. I remembered the Christmas shopping fiasco, and since then I had come to terms that I do indeed have impulsivity issues. So, I sat in the driver's seat and took everything out of the bag, I ended up taking back five of the shirts before I drove home. I remember I was happy with myself for being so responsible. I still have moments like this. I went to Walgreens two years ago on my lunch break for stocking stuffers and ended up spending two-hundred dollars in thirty minutes. No idea how, or why. I don't think I returned anything from that trip, but I came back to work and told my coworkers. Their eyes bugged out and we all had a good laugh. So again, for those who struggle with money, with math, with impulsive buying, make a list and stick to it. If you have a day of impulsive buying, take a few minutes and go through everything. There is NO SHAME in returning items and you will save money. Also, there is probably someone who wanted an item you end up returning, and you will end up making their day. So the next time you are in a store to pick up milk and butter, stick to the list. You do not need the plastic cups with built in straws, or the cat shaped chip clips. Keep walking. One foot in front of the other, straight to the register. Do Not Pass Go, Do Not
Collect Two Hundred Dollars. And don't spend two-hundred dollars.
I have Fetal Alcohol Syndrome. I went to college. I have an undergraduate degree in Communicative Sciences and Disorders. I went for my master's degree. I failed. Yes, seriously, I failed. I almost failed undergraduate, but managed to come out on the other side. I think I ended up with a 3.3 GPA. Not bad, right? Well, I handled classes in which memorization was key extremely well. I did well in Anatomy 101, and Phonetics. There were body parts to memorize, and sounds to imitate and ingrain into my brain. I am a master at making acronyms to remember words and definitions. That part of both undergraduate school and graduate school was a positive experience. As all around.
I am an adult living with aFetal Alcohol Spectrum Disorder. As an adult with Fetal Alcohol Syndrome, I am constantly searching for sites that share in my quirkiness, and answer my questions i have about adults living on the spectrum. Take a peek at my blogs! They describe daily quirks, and ideas for parents, educators, children and adults living with FASDs.