FASD N' ME

https://www.fasdcollaborative.com/post/runfasd-or-slow-or-walk-or-roll-or

-Stick to 1-2 step directions;

-Repeat when asked;

-Idioms:  We may take them literally, just sayin’…. May want to be very concrete when speaking;

-Give us more time than some need when processing directions;

-lists and photos work to get things done;

-What we remember one day we may not the next: How to make cereal, how to tie our shoes, how to get from point A to point B;

-We have dysmaturity, think younger.  Like ½ our age younger.  Sometimes not that young;

-Yes, we have splinter skills: High aptitude in one or more areas, low aptitude in other areas;

-We want to please, make people happy;

-Many of us are Sensory seekers and sensory avoiders. WEIGHT can help many of us regulate our emotions and physical jitters;

-IT IS NOT THAT WE WON’T, IT IS THAT WE CAN’T (at that moment, maybe longer).

-EVERY DAY IS A NEW DAY FOR US. OUR BRAIN RESETS EVERY DAY. 

-It is OK to Get Frustrated and Exhausted.  Just try to remember, us living with an FASD feel those feels too. ALL THE TIME.

 

 

Multi-step directions

Break them down, so I can understand

Tell me it’s ok, if I use my hand

To add three plus three

So I know what the answer will be

Please don’t laugh when I go to bed at eight

And then sleep for 12 hours straight

You see, for my brain to focus and learn at its best

It takes a lot of energy, and a lot of rest.

I have damage to my brain

Often, it can be a drain

To my social and emotional state

Many of us have issues showing up late

Cause and effect, what is that?

Impulse control issues, and many love to chat

Executive Functioning is where most of us lack,

All we ask is that you have our back

Take time to listen, take time to see

That we are so much more than our FASD.

 

I am going to propose a scenario to each of you.  Close your eyes.  Go ahead, close them.  Ok…now I want you to envision a foster child.  Well, a teenager.  18 years old.  Let’s name them Harrison.  They are considered “An Adult” by state standards.  The state doesn’t consider the trauma this child has been through. It doesn’t consider that on paper, Harrison is 18, but emotionally and socially they are half of their chronological age.  So, this 18 year old “adult” leaves foster care to go find a job, find a place to live, and support themselves.  Harrison goes to interviews, and they get a couple job offers, because they interview so well.  Their verbal skills are amazing, maybe at a 25-year-old age level.  They get excited because they nailed a job!  Harrison goes to their first day on the job, but they don’t last more than a week. Their first day they show up late, because they have time management difficulties.  The second day they are late again. Harrison sets an alarm, but their mind can’t calculate how much time is really needed to get ready in the morning. Fifteen minutes is NOT enough time to get out of bed and then remember the tasks one should complete before exiting the door. Fifteen minutes in Harrison’s mind IS enough because they are only calculating how long it takes to arrive a to work once they are out the door and actually on their way to work.    

 

The employer has no idea about Harrison’s FASD because this 18-year-old doesn’t want to ruin their chances of employment.  Harrison doesn’t understand the cause and effect of being late.  They do understand that their disability is not understood in much of society though, so they keep it close to their heart.  By the end of the work week, this 18-year-old is brought into their boss’s office.  The boss has them sit down.  They proceed to tell Harrison that this job isn’t going to work.  They were late every day and kept asking how to complete the same round of tasks, over and over again.  Harrison didn’t think to write down the instructions, because up until now, they had been written down for them, in a way they understood.  Using pictures, short sentences, simplified.  The employer had instructions for tasks, but they were in paragraph form, with words Harrison didn’t know the meaning to.  Which the boss wouldn’t expect to be an issue because Harrison did incredible in the verbal interview!  There is also the trauma Harrison lived through, that was never disclosed to the employer, because this “adult” really wanted the job, and they know the stigma attached to trauma.  So, when an employee came up and attempted to tell Harrison that they were doing things incorrectly, Harrison saw the employee as a threat, as someone telling them they weren’t good enough.  In turn, Harrison started yelling, became defensive and used profanity. Then Harrison ran out of the office building and went home. 

In addition to Harrison attempting to get a job, they are also looking for a place to live.  It can be an exciting time for many. A place to call your own!  For Harrison though?  This is what it will look like: Harrison struggles with money.  They know how to count money and know how much they have at one time.  Where they will struggle is rent.  Utility bills.  Groceries.  They have impulse control issues, so Harrison will see something on Amazon that they think they need at that moment. The money that is for rent, utilities, and groceries. They will use it for this item on Amazon.  They will not realize him buying the item on Amazon will subtract from the amount of money they have for rent and utilities.  Cause and Effect are not Harrison’s strong suit.  If they decide to live alone, the responsibilities will be all on them.  The cleaning, the grocery shopping, paying everything on time.  Harrison doesn’t know how to mark payments and appointments on a calendar.  When they try, they write them down on the incorrect date and time.  This means rent will be paid late.  This means Harrison will not be long for this apartment they scored. 

Yes, Harrison is 18 years old on paper, but do you all see what I see when I describe this “adult?”  I don’t see an adult.  I see a scared little kid wondering why the world isn’t treating them right, wondering why life is so tough for them, when they see other 18-year-olds out there making it just fine.  Neurotypical people, that is.  This “adult” has the emotional age of about a nine- or ten-year-old.  Maybe a little older, maybe a little younger, depending on what happened in their life.  This 18-year-old no longer has that scaffolding they had for years.  Someone to help them make their appointments on time, someone who understood their “quirks” and how they learned. So essentially, a child, nine or ten, is going out into the real world, attempting to live in a world where people see them as 18.  I know many states do have supports in place to help those at age 18 to stay in the system and get accustomed to the real world. Yet, even at 21 or 25, when they pack their bags to go onto the streets and live their lives, emotionally?  They are still only eleven or twelve years old.  Now I ask you, what eleven- and twelve-year-old would you set free on the streets to make a life for themselves, with no support? 

***Please understand, I know many foster care systems are incredible, and do their best to prepare their children for the outside world.  Unfortunately, many of the kids want to be independent and are head strong, tell everyone they can make it on their own. They don’t ask for help; they want to figure it out.  Many have been burned asking for help.. Mistrust of humans has set in.. Unfortunately, many don’t figure it out.  They end up on the streets, making bad decisions, because their brain needs external help.  My hope is that little by little, people can help those with an FASD live interdependently or independently and hold down a job.  My hope is that those with an FASD will break down the walls they have up, and allow that help in.  Everybody needs a little help sometimes.

 

 

TRAUMA: It has no boundaries.  It does not discriminate.  EVER.  There are no age ranges of who it effects. 

It evolves differently in each of us.  Different events come and trigger us.  I believe every single person has had some trauma in their life, at some point.  On July 8, 2023, my best friend’s old house caught fire. Her son, my son’s best friend, was the only survivor.  His baby sister, my surrogate daughter, died.  Five years old.  Her dad…didn’t make it.  He and I had become friends since Covid.  He was a wonderful dad.  She was the most beautiful little girl.  They didn’t deserve to die.  They had so much life to give. So, so much.  That little girl took her first steps in my house.  She gave the best hugs.  After she passed, I found out from teachers that she was the one who helped all the kids in kindergarten open their lunches if they needed help. Helped with the baggies, with the juice boxes. Never asked, just did it.  She was a sassy li’l thing though.  Her brother jumped out his second story window. He survived. No broken bones.  He was all who survived.  4 people died.  The world lost 4 beautiful souls.  

I wasn’t in town when the fire started.  I woke up to Facebook posts about it.  My first text was to the girl’s father, asking if he was ok. I would discover soon enough that he wasn’t.  I was not 100% sure at that point it was their house.  Next, I called my best friend, the little girl’s mom.  She was screaming, she had come on the scene and didn’t know who was out and who was still inside.  I called her about an hour later.  She couldn’t speak.  I told her I would name the people in the house, and she would say yes or no as to whether they were still with us.  “Emily,” I whispered.  “No.”  I fell to my knees in the parking lot, lost it.  My youngest son was next to me through every post  I read, every phone call I received, every email, every text.  He was traveling back with me.  Emily  was only 5.  That was my best friend’s baby girl.  I knew at that point Anthony, her son, had gotten out.  I found out that Emily’s great uncle, and her dad’s girlfriend also never made it.  Her dad passed at the hospital.  Tragedy…trauma.  

I see her everywhere; I hear her talking to me.  I hear her footsteps running to give me a hug.  I hear her throwing a temper tantrum as she did many times when she had to leave our house.  The last time I saw her was in May of this year, in my backyard, doing cartwheels she had just learned.  She was running around with her brother and my two boys, playing tag, as mom and I watched, laughed, and talked.  

Trauma:  I see fire trucks, and my breathing starts to increase slightly.  I hear sirens with the same result.  I drive past where the house used to be, daily. My breath sputters. My family has yet to have a fire down on our patio, since the tragedy.  We have been to other houses with bonfires.  Those have been ok.  I think because it is at my home, where she used to run around, and I used to constantly tell her to, “slow down.”.  Events can occur, and one may wonder how that event triggers a trauma response.  For me, I recently found a pink baby shark toy under my son’s bed.  My brain thought of Emily.  Baby Shark was one of her favorite shows as a toddler. My oldest used to play the theme song on our keyboard, and then she would try to play it and sing along.  I then remember the tragedy, that she is no longer with us.  The heaviness in my chest comes back, the tears start to surface.  I am then catapulted to the times we shared together.  I get chills in my heart, my body, my soul.  Trauma can come out of nowhere.  

I have a brain disorder. Permanent brain damage.  I have Fetal Alcohol Syndrome.  One of the ramifications of this disorder is perseveration. When trauma occurs, getting through it and not having it come back time and time again can be so tough.  Our brains fixate on events, and what events it chooses vary.  For me, Trauma is one my brain catches in the repeat loop.  I keep going over the events, in detail, what I know, how I felt, how I feel, what s different now, who is gone, who survived, and how are the survivors going to be affected.  A negative that comes with perseveration for sure.  One’s brain may be released from the repeat loop of traumatic events, but then something happens, and the trauma is triggered again.  The perseveration begins  again.  Sometimes less intense, sometimes more intense, sometimes the same.  How do we get through it?  Those of us that are experiencing perseveration?  We find our people.  We find our supports and talk it out.  Whether that be a counselor, family, friends, find your people.  Talk to them. Let them help you through it.  Perseveration is our brains trying to process information.  Sometimes it just has trouble and gets stuck.  Like an old school record player that skips…over…and over again.  This too shall pass. 

My grieving comes in waves. Usually when I am alone.  My tears, there are many more.  I know Em is with her dad, and I know they are ok.  Not in pain.  My heart aches for what we lost, but also for my best friend and her son.  The survivor’s guilt he must feel. He has started to talk about his dad and his sister more.  That is how he is dealing.  He is my “other son “.  I hope he heals, gets the help he needs, and grows up to be a strong, kind young man.  The man that his dad was helping him to become.  

So those of you living with trauma, I see you.  I feel you.  My feels may be different from yours, but the effects are the same.  They can incapacitate you, freeze you in time.  They can make you weak with tears.  No matter how you experience trauma, IT IS REAL, and IT IS BIG.  We can work through it, but everybody has their own timeline.  Be patient and be present.  That is all we ask.

I love to watch old school reality shows. My most recent show? COPS. Yep. Here is a plug in for free Pluto TV my friends. They play COPS LIVE. I love looking at the 90s motifs, the big, clunky police cars and the uniforms. One thing always remains constant in the police world. Reading the criminals their rights. I am much older now then when Cops came out as one of the first Reality Shows. I now see the show through a different lens. The lens of one with an FASD.

I was recently sitting and watching the show, and taking notes in the margins of a scrap piece of paper. I am not saying the perpetrators all have an FASD, but what I saw was the protocol of the police and how certain aspects could be confusing and frustrating to those with an FASD, and could result in an altercation with the Po Po. Here are some nuggets I gathered:

1. In every scenario, when a suspect is arrested, the officer recites Miranda Rights: “Anything you say can and will be used against you in a court of law.” -That sounds straight forward to a neuro-typical brain, right? Many people with an FASD would be overwhelmed and in fight or flight mode, and may think that means do not speak AT ALL, no matter what. Don’t tell them my name, my age, or where I live. If they are asked, “Do you want water?” they may not answer. After all, they are just following directions. I get that protocol is protocol. This is just an obstacle that we can face.
2. I watched a few shows where the officers talked about waiving rights. To this day I get confused as to what that means. It is not your everyday coffee talk. One with an FASD may not know that word, and maybe they think it means they will get to be released, no questions asked.
3. One suspect was caught and asked if he had “anything on him.” Hmm…Abstract language my friend. On him? Our brains are very black and white, and while YES we MAY UNDERSTAND that lingo, there are those of us with brain damage that would think, “Of course I do! I have underwear, socks, shoes, pants and a shirt on me! What kind of question is that?” So we answer yes, and the barrage of questioning continues. The cop gets so irritated because they search you, and there are no drugs or weapons anywhere on you! Well of course not, but I have clothes on me, Man! In the episode I watched, the suspect was a 17 or 18 year old kid who was holding drugs in his mouth. Now, most likely he was hiding them from the police, but, for shits and giggles, let’s say his brain is literal. The drugs are not ON HIM, but INSIDE him.
4. Multi step directions. Police officers are notorious for this, and rightfully so, they have a job to do. It is hard to change a way of thinking and doing one has been taught in schooling. “Get out of the car facing backward and walk toward me.” Some with an FASD brain would have gotten out of the car backwards, then turned around and walked facing forward to the officer. Who walks backwards? That is just silly, right? The officer says it because it is a safety concern. Oh, and don’t forget put your hands up. Some would forget that part and would be tackled to the ground, not understanding what they had done wrong. THEY HAD followed directions. They had not heard him asking to put their hands up. Or, “Get out of the vehicle with your hands up!” HOW IN THE WORLD ARE THEY SUPPOSED TO GET OUT OF THE CAR IF THEIR HANDS ARE UP? Many of our brains hear every 2nd or 3rd word. Think about that for a second.
5. Loud Voices: I know police have to yell at suspects if they feel they may be in danger. I understand completely this is a necessity. I am just going to say it may cause a suspect with an FASD to react badly, such as covering his ears, or even running away from the noise. He isn’t running from the cops, but from the noise. Again, I know yelling is necessary for safety.

***I want my readers to know I understand police protocol is necessary for safety reasons. I am just giving my viewpoint on what could go awry when one with an FASD gets caught by the cops, and why things go sideways. I do think education of FASD and neurodivergent disorders could be extremely beneficial to law enforcement. I know protocols are slow to tweak, and there is usually push back. We have to try though. Change is always there, waiting in the wings. It just needs to be seen, acknowledged, and then action can begin.

DID YOU KNOW?

–$30,945.00: Includes the costs associated with juvenile and criminal justice per person with an FASD, 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).-www.fasdunited.org, 2021.

*This amount of money is staggering to say the least. It is probably a conservative number also. Think about those in the criminal justice system that have not been diagnosed?

-Those with an FASD are 19-40x more likely to be involved in the Criminal Justice Syestem (2022, www.policechiefmagazine.org)

–23-36% of those in the Criminal Justice System met FASD Criteria (2022, www.policechiefmagazine.org)

–60% of adults and adolescents with an FASD report contact with the legal system (2022, http://www.policechiefmagazine.org)

As a society, we need to do better. We want to educate, but we need opportunities, and we need the public and the criminal justice system to listen. We can’t do it alone. We need supp

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.