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FASD and Autism…

I was recently diagnosed with Autism Spectrum Disorder, too. About 3 weeks ago. I have not said anything, here because I don’t know how I feel. There is one thing to think you have something, but then you are actually diagnosed with it. I went through the same thing when a doctor said I had all the characteristics of someone with FASD. I knew that you could have both. I actually wondered if I did. I have heard that people with FASD can have both. I know both can have a lot of the same traits, but I had a neurologist ask me a bunch of questions and he said not only by my answers, but in observing me, he knew I had Autism. Hmmm. Someone asked me how I felt. I didn’t even answer. I really don’t know how I feel about it. I’m not saying this is bad. I have got to know a lot of neurotypicals in my years and I can honestly say, there is not one I would want to be like…lol. So, I’m okay with being on the spectrum. When i wrote Autism Spectrum Disorder, the word that I kept staring at was Disorder. Really? This is a disorder? I want to look up what that means. Wait a second…okay a medical condition involving a disturbance to the usual functioning of the mind.

Okay. I will let that process.

Who says how we process and what we do is a distrubance. Okay. I get that things are not right. But who says that neurotypical brains are just that…typical?…

Just a question. Image


I’ve always been quiet. My brain is not! If I could say what I think, I would never shut up…lol. I find myself in situations where everyone is talking and I seriously cannot connect my brain with my mouth so I appear quiet or shy and that is really not the case. Well, I might have a little bit of those, but really I’m like that because I know that my brain is not cooperating. It can be embarrassing to have a room full of people waiting for me to put my sentence together. For some reason, putting my hand on my head helps. I really have no idea why. Have always been that way. If I put my hand on my head and breathe in deep, I can gather myself together enough to form sentences.

Putting my hand on my head calms me. My insides are anxious and just that feeling of a hand on the head is an instant calm, even if it is my own.

I think one of my biggest frustrations is communication. I could walk around with a pencil and paper and communicate all day, but that is not how the world does it. We are expected to do what the rest of the world does. What if we all walked around with different forms of communication. Not just speech. A lot of my frustrations are simply because I am not able to communicate what I want or need to.

The people who I like to be around are those who help me to communicate. They are patient. They don’t force me to tell them what I need to in their allotted time. They don’t let me feel small because I am having a rough time getting the words out.

Finding ways for someone with FASD to communicate can really alleviate a lot of frustration. I know I can act out, get agitated, get angry just because things build up and I am not able to communicate the way others do. We really are forced to be in a world where walking around with a pencil and a paper to communicate would just be looked at as weird.

I wish society was more accepting of disabilities. The numbers are growing that having a disability is almost the norm. There are so many people with autism and FASD that you would think that there would be different options of communication that are acceptable by now…lol. I know thats a stretch, but let an FASDer dream. I would love to just whip out my pad and pencil while in a mall talking with friends and just write so I can say exactly what I mean instead of sit there for a minute trying to get my brain to connect with my mouth to get the words out. and even still, not even say exactly what I mean, but bits and pieces of what I wanted to say. It’s okay. But it really can make a day in the life of someone with FASD, very hard.

It is crucial that the FASDer have people in their immediate circle who can help them to communicate. Let them find their way to communication. Help bridge that gap.

Encourage drawing, singing, writing song lyrics, photography, and writing. Let them build with legos or find other creative ways to express who they are and how they see the world.

I know for a fact that our silence brings about a deeper thinker. We are very deep thinkers and we connect with life in a way that others do not. That adds to the frustration, I think. I see so much. I see pain deeper. I see heartache in a way that I feel it. I want to convey people’s pain and the way I see things so I start shooting my camera or writing because I feel this stuff and I can’t find another way to get it out, but to do it creatively. It really helps eliminate some frustration.

We get stuck. We don’t want to be stuck in our frustration where it gets to the point that we act out regretting later what we did. My thing is punching walls or myself.

I hate with all of me to be stuck. I want to always be moving forward and I am constantly trying to find a way to do that. How can I learn. How can I move forward. This didnt work. This didnt. work. I will work until I find a way to make it work. How can I do it?

How can I communicate? Help us find ways to do this. Sit down next to us. Quietly. Meet us where we are. Let us calm and find a way to tell you what we are feeling. Let us tell you how we see the world. Hand us a pencil and say write it down and tell me. Draw it. Write me a song or a poem that conveys what you want to say. Is there a character on tv that you can relate with that you can share to tell me how you feel? There has to be a way and that way has to be okay for everybody in the room.

Sometimes it is nice when people (society) comes to the world of those who have disabilities and they are forced to communicate the way we understand instead of us having to always work outside of our brain abilities just so its socially acceptable.

Helping us find ways to communicate equals a calmer house. Equals a calmer FASDer or someone with autism. It means frustration will melt before a meltdown or a blowup. When you see a meltdown coming or a blowup, hand them a pencil and paper and ask them to tell you exactly what they are feeling. Write. Do whatever you need to tell me how you feel. Do it please because I really want to know.

Adjusting to this neurotypical world

Most of the time when I write, whether it be for the newspaper or for a blog post, I do it because I want to offer hope to others. This time, I just want to write because quite frankly, I’m feeling down about some stuff. I’m up most of the time because life remains a routine for me. I wake up at the same time. I take my daughter to school. I eat and the rest of my day is my routine of writing, photography, errands that I am familiar with, and anything I NORMALLY do. BUT, when one thing gets out of place, I can feel my insides begin to panic.

Now, I have been doing this a lot of years. I’m not a kid. And yes, I do know that people with FASD are a lot younger than their physical years…lol. I know that very well as I sit and watch cartoons and eat my Apple Jacks. But, in a lot of ways, I am very much an adult. Maybe not in my 40’s where I should be, but in my 20’s, at least.

I have learned how to adjust and compensate with a lot that comes with being FASD, but every now and then, I feel different than the average Joe…or I guess I should say Jo-ette.

I really am okay with being different. I have learned to go off on my own when I need a break in a crowd. I have learned a routine that works for me. I have learned ways to communicate when my mouth does not work for me. I have found external brains that are good for me when I go out in a new area or crowd I’m not sure of. I really am okay with all of that because I can still LIVE with this thing they call FASD.

I remember  my body going into shock many times, growing up.  Shock …that’s what I call it…it’s like a change of routine and my body doesn’t know what to do with it, so it goes into…shock. It’s like a freezing. Whereas most people can just say, oh okay…no problem and they just go on with their day.
My body goes into this shock/freeze and I go into this panic and I have no idea how to release it. I have blown up, hit things, and the opposite of all that…shut down. Which I do NOT call LIVING.

It’s like my body has no idea what to do with the smallest of change so I just completely do nothing. I get stuck, I guess you could say, when I get over the initial shock.

I knew that we had Bingo tonight. I never go to Bingo. It is a fundraiser for my external brain’s camp that she is director for. She asked me to go and I wanted to go. I like Bingo. My daughter is going to so I thought okay, no problem. I have it set in my head what is going to happen. My external brain is going to come home like routine, we are going to eat and then go to Bingo.

She tells me that she has to go straight to Bingo from school, her other job, and that she won’t be coming home at all and my daughter and I have to go to Bingo by ourselves. She has to help set up and get things ready for tonight.  Now, this is a new place,over 400 people that I don’t know. And I have to find my way to our table and figure out what to do,…

Besides that, my day, today, was going to be completely out of routine. I was going to go to a flea market, for the first time, and sell my photography.

AND I’m to speak on a call with Jeff Noble, FASDforever tonight with like 50 people on a conference call that he asked me to do.

I started to panic. NONE OF IT WAS MY ROUTINE!

PLUS I was to do the call from Bingo and Not in my comfortable home where I can mentally prepare.

I honestly felt how different I am. I watched my daughter and Kerri just go with the flow of life while I shut down because little things are different. Well, to a neurotypical (NT) this would be nothing, maybe. For someone with autism or FASD, these are huge changes.

I was trying to deal with the changes that were presented to me and I went to go pick up baskets for the Bingo raffle, etc. I watched these two neurotypicals talk. I stood back, in the distance, mouth shut, and just observed their interactions. They were so free. They were so full of words. They interacted as if it was nothing. They were comfortable. They were fun. They knew how to communicate.

I didn’t join in. My mouth would not work and I just observed.

It really was like being on the outside, looking in.

We were pretty busy last night and we came home and I just sat on the couch reflecting on the day. Changes in routine. Unable to communicate with others. I really did realize just different I am. I was pretty sad.

Yes, I do know that I have a lot to offer. Yes, I do know that I have gifts and talents and I offer a lot to others, but sometimes, when I sit back and watch others, I really do see just how different I am.

I also know that not everybody is the best communicator. I do know that I have had to find creative ways to make up for it. I am an awesome artist. I can draw, write, and do photography like any professional. I know that I am a great swimmer. I know that I have persistence and determination and a love and passion for life.

I know all of this, but sometimes…I just feel different…and it sucks!

I have been in many social situations where everyone is talking and I stay back because I don’t understand all the words being said. I get overwhelmed easily. I don’t know how to fit in. My sensory stuff is kicking in. I just stay quiet and shut down more. These are times I feel different.

Changes in routine. Crowds. Social situations. If you know of someone who is FASD or autistic. This is the time to just sit with them. Let them be quiet. Know they are having a rough time at that moment and just be quiet with them, if that is what they need.

Let them have time to process. If you know a change in routine is coming…tell the person who is FASD or autistic so they have plenty of time to prepare. I appreciated my external brain telling me over 24 hours before the change. That did make a huge difference. I am much better today with the changes than yesterday, when I first heard.

Make sure that they are told with caution, slowly, and in bits they can handle. Make sure one thing is processed before you move too quickly into another change.

AND, dont get angry with them when they get upset about change. Let them be who they have to be while they process.

My external brain told me the changes. She knew I would have a period of acceptance. She knew I could throw a fit knowing I was going into a strange place with a lot of people I didnt know and have to figure things out. She knew I might panic over realizing I would be at a strange place doing a conference call with 50 people. Maybe I would shut down. She let me be who I needed to be for that time and she didn’t get mad.

My brain instantly started to work after I shut down. Okay, I can go into a private room and do the conference call. Not ideal, but I can do it. I  can rely on my 16-year-old for an external brain when I have to. I don’t like to do it very often because she is my daughter, but she does know when to kick it up cuz mom is confused. My external brain, Kerri, told me she would meet me in the parking lot and show me what to do so I’m not confused. I started having more confidence and told myself I will figure out what to do by watching.

Watching is a specialty for me. It’s like I can’t hear great. My senses go haywire in crowds, but I can watch to figure out what I’m supposed to do next. I will just go, watch, and do my best.

I told myself I can do it.

I have learned to make expectations for myself be a little different than the normal NT. I have learned to be proud of myself when I do things that I could have avoided just cuz it would have been easier.
I have learned to adjust to things quickly.

Every single FASDer has to find their ways of surviving in a world with neurotypcals. We are used to having to adjust to their world more than they do ours.

Short term memory and FASD…adult style…

The other day, my external brain asked me to leave the toothpaste with the lid facing up because…this is where it starts to get fuzzy…lol. No idea why. Also, by the time I went to do what I was told, I forgot if I was supposed to put the toothpaste lid up or down. I stared at it for a few minutes completely wondering what in the world she had JUST said.

My daughter and I live with my external brain. (the person who helps me understand my surroundings.) We don’t have laundry facilities in the apartment and I told my daughter to get her clothes because they should be done drying. She went. Five minutes later, I asked her if she got her laundry. Guess who has short term memory problems!

Yep! Me.

Living with this is so hard, as an adult and as a parent. Fortunately, my daughter, 16, is one of my external brains and she rarely takes advantage of this, but when she wants to be her normal teenage self…well…she absolutely can use it to her advantage.

I wish I remembered things like everyone else. It can be embarrassing at times when I forget something that JUST happened.

When I was five years old, in Kingergarten, the neurologists said that I had significant brain damage and retention was going to be just about impossible for me. there are times I remember. I have no idea why certain things stick and most things don’t. I’m not sure if it is something visual that goes along with it that all of a sudden, just something sticks and becomes a long term memory, but for the most part, I really struggle with this.

If I don’t write it down…chances are, its gone within minutes…or seconds.

In school, as a kid, I normally forgot what the teacher said, right after shehad  said it.

I read something the other day that I know for a fact, WORKS for FASDers in the classroom and at home.

One: Keep things simple when explaining.
In just a few words, say exactly what is wanted. Without detail. Just very specific. Once something starts off into too much detail or explaining, they lose me. So, say what you need to say in the first sentence.

Two: Be concrete.
Us FASDers DO NOT understand abstract AT ALL! I often times don’t understand words that are said until I can put something concrete to it, then I get that ah ha moment. We do not understand innuendos. We do not understand a lot of body language. Just say exactly, in short phrases, what you want or need.

Three: Repeat, repeat, repeat directions and rules.

Four: Have the FASDer repeat back what they are supposed to do. Make sure they understand the command. This helps tremendously! It forces the direction, I think, to go into a different part of the brain. I’m still not able to go too much further than two commands at a time, but saying it back absolutely helps me to retain it.

Five: Be consistent in the learning environment.
Transitions and out of the ordinary things completely can be devastating and create anxiety in someone with FASD. It absolutely will wipe out my memory if something happens that I was not expecting. Routine is important. Very similar to austim. Try to be as consistent in how you teach and the structure of the day.


I can’t speak for all FASDers, but I know for myself, being like this has been embarrasing, at times. I work very hard to look like I understand everything that is going on around me.I think we are masters at ‘looking like we understand when we really have NO idea.’ I nod and say okay. I try to look busy as I watch everyone around me. I watch what they do to see what I’m supposed to do because I didn’t retain a thing. I have had teachers say things to me that left me feeling worse than I already felt. They didn’t get FASD. They didn’t understand that I didn’t do it on purpose. And even though they told me several different times, I still did not remember.

To go back to the laundry thing…I did my friend’s laundry, the other day and I brought them in damp. Now, I know not to do that, but we were in a hurry and I had dried them twice and had another load in the wash and I knew we had to go. Sooooo I brought hers in damp.

I told her that for some reason the dryer did not seem hot enough. She asked me if I checked the settings.  Ohhh…the settings…and I forgot what to do with them.

She told me it was okay if I had never been taught.

See, that’s the thing…I have been taught. Unfortunately, with FASD, we are learning THE SAME things for the first time…all the time…lol.

It can make life fun…there are a lot of firsts…lol.

The sad part, I think is…well… I really want to learn and retain.

My Kindergarten teacher figured out that I needed a lot of help. More than what she could give me. Mrs White. She is the reason I got my neurological testing. She got outside professionals involved and to this day, treats me with respect.

She came to my graduation party when I got my Masters. They said I wouldn’t graduate high school so she wanted to celebrate with me.

The reason I go through college and my graduate program was… I studied ALL the time. I was able to retain enough information to do well on each test.

Persistence. Perseverance. Determination. These are the keys to learning when you have FASD. It can be done! Don’t let anyone tell you, you can’t. BUT, you have to be willing to work very hard!

I had a roommate, in college, that got all A’s. Never studied. I studied all the time to get a C. It was what it was. I had two choices. Cry about how hard I had to work and how everything came easy to her…(the not fair dance)…or work hard with a smile on my face and be willing to enjoy it, regardless.

I think my C was as good as her A. I was proud of myself when I looked down and saw a C because I knew it was the absolute best I could do.

One thing about me, and I think most FASDers, we are happy. We want to learn. We want to make it.  We enjoy. We let things go and move on…lol.

Maybe it’s that short term memory thing…lol.

Peace out


This was written by a fellow FASDer: R.J. Formanek, an absolutely creative writer. I asked him if I could post this in my blog. I am so excited that he said yes. He has a site on Facebook called, Flying with Broken Wings…a site for those with FASD and their caregivers/external brains, etc.

This is what he wrote…

I just wanted to say that a whole lot of people focus on the negative side of FASD, and while that is the over all concern, please don’t forget that FASD is so much more than just the bad stuff.

We are your dreamers, your musicians and poets, we write the stories that touch your very soul, we are the ones that come up with the miracle cure when nobody else can, because we are the original “out of the box” thinkers!
Look at our photos…there truly IS so much more than meets the eye!

Who else do you know that can get total joy from the first rays of sun, or a warm gentle rain, the sound of a lone loon at dusk or just the fun of playing in a puddle after that warm gentle rain? We are comedians and magicians, tricksters of the first degree, beware of the twinkle in our eyes…it means we are playing! We love to make those around us happy! We love to share.

So, that’s my little thought for the day…the sun is out, the sky is blue and dammit! I’m gonna go find me a puddle and a chunk of wood, and play boats!
…you all have a great day now!

FASD and education….from someone with FASD

Lately, I have been hearing from FASDers and their caregivers that there is quite a bit on FASD prevention, but there needs to be more services and education for those who are currently LIVING with it.

Is FASD still considered NEW?  People have been born with alcohol exposure since there has been alcohol. Why is there NOT more services in place? A site that I belong to for those living with FASD and their caregivers/external brains) has special ed teachers as well. I am blown away that there is not more being done in the schools on FASD.
I have learned in FASD circles that the proper codes, etc. are still not in place for FASD children on IEP’s. Those living with FASD state that they are helping their doctors understand FASD. Those living with it are having to advocate for themselves, pass out literature, and educate. 
Yes, I agree with the comments that those who have it are the best experts. We have to deal with our brains every day. I guess, and this is strictly what I’m hearing on other sites, that they are trying to get the right definition, symptoms, etc. for FASD in the new DSM V, that is going to be coming out. Those ‘experts’ are having difficulty trying to figure out what to do and how to understand FASD.
Well, for one thing, spend one day with one of us and you will understand that this is VERY complicated. It would be nice if the EXPERTS (doctors, etc.) would make a panel of FASDers and their caregivers and   spend a day just asking US questions. Diving into the minds of those who live, eat, and breathe it every single day.
Why are there no IEP’s in place for FASD? I heard, and again I am not an expert on this and if anyone can give me more insight, that would be great, but I understand that the education is just not out there for current teachers, school districts, etc. to truly understand how to deal with FASD children in the classroom. Some schools, yes. Some schools, no. 
Why is FASD not recognized by the average person? I do know, from a personal level, that when you say FASD, people do not understand anything about it. They do not know how much it resembles autism in sensory issues, etc. In fact, many of us could have a dual diagnosis with FASD and autism. I know I could. I fit under both in a lot of ways.
I do know that I do not see commercials on television on FASD. I do know I have seen prevention ads at times about not drinking while pregnant, but there is nothing out there about those who are currently LIVING with it. We don’t have an FASD month. I don’t even know of FASD ribbons, like so many other causes have. 
When I wrote a blog, initially for Jeff Noble, an expert on FASD,  I was told from many, that the adult voice was missing. That is the reason I started the blog LIVING with FASD. I realized that not only the adult voice was missing, but also the HOPE in FASD. 
I have had people call me from other states, since this blog has started, thanking me for this perspective. Letting me know that this perspective is just not out there. I have had many let me know that they are learning more about their own loved ones with FASD through this.
I have heard the main connection people have had with FASD, until recently, was the book, The Broken Cord, that was written decades ago.
I do realize that all those with FASD are NOT the same and I do not ever want to be the expert for all LIVING with FASD. All I can do is give my own thoughts, feelings, and opinions on LIVING with this. 
It is sad, that the perspective has not been out there.  I belong to a fb group for FASD. I have learned more there than I could from any expert. I am so thankful for the adult FASD individuals I have met. I know we are different, but I have found TWINS…lol. I fit. It makes me so happy to find like- people.
Living in a world with NT’s (neurotypicals) is hard when your brain absolutely, positively, does not operate like anyone else in the room. It is hard to explain what is going on when it is going on. It is hard to express feelings and emotions. I don’t do well on WHY questions because to tell you the truth…I really don’t know why and most of the time, I don’t understand enough to even answer a question…lol.
There is soooo much to living with this, what I call, sensory-unfriendly, brain-confusing disorder that we live in.
One thing that I would love to convey to those who do not understand FASD. We truly want to do what is right. We often times just dont know how. We are not as defiant as some might think. I know it appears that way, at times. But honestly, we just do not understand. I know I think I am doing what I was asked, only to find out I did it completely wrong. 
I’m sure it would look like I didnt listen. I know it might have looked defiant. But honestly, my whole entire heart wanted to please and wanted to do what I was asked.
I wish teachers, etc. understood that part. Because if we could do it right…we would. 
We need more education on the basics of who we are. And again, like many disabilities, we are not all the same. BUT, we do have general characteristics/symptoms that fit under FASD. A spectrum of the disorder. 
This is an example of what I have experienced when it could appear defiant or that I wasn’t listening. “Ann, go downstairs and get peanut butter, sugar, and napkins.”
As I walk downstairs, I am going through my head what I was told. okay…peanut butter…..ummm…

I bring up the peanut butter and put it on the counter. “What else did you say?’
“You didn’t listen to me.”
I’m quiet because I do not even know how to answer that statement. 
An example in the classroom is the teacher is talking. She gives instructions to the classroom. I hear the first few words than the rest becomes…blah, blah, blah. I have to look around to see what the other kids are doing so I make sure I’m doing what the teacher said. It looks like I’m cheating. I’m not. I simply want to understand what I’m supposed to do. I still do not understand. I sit. I don’t do the work. I want to do it, but I don’t understand what I’m supposed to do. The teacher tells me again. Many steps in a row. I only remember the first couple. Again, confused.
Defiant? no.
Didn’t listen? no.
Wanting with my whole heart to do what was asked? YES. 
Defeat. only to feel like I failed. I didnt do what I was told. I let people down. Everybody else understood, but me.
This is why understanding FASD is so important. If the education is out there, than teachers will understand that one instruction at a time works. Distractions in the classroom make it harder to focus. Slowing down speech is vital. Making sure the person with FASD understands, is key. If not, don’t make a big deal out of it. Patiently, explain again. One word at a time. Processing is hard. Allowing as much time as needed for the person to understand what they are supposed to do. Once we get it, we will do it and we will give our all. And we like PRAISE when we do it right…lol. 
I know for me, I am this adult, immature kid that loves making people happy. My whole being lights up when I know I did something right and that I made others happy. 
Well, that’s it for now…

I am FASD and…

You know, for a long time, I thought I had autism. A neurologist believed that was what it appeared to be. For some reason, when I thought it was autism, it seemed okay with me. It was like something that I understood. I don’t mean mean medically, but it was something I was able to accept more.

When someone asked me if my biological mom drank when she carried me, I said, ‘yes.’ I didnt even think a thing about it. They gently decided to tell me that the neurological disorders they saw in me were a lot more extensive than autism. I didn’t even know what to make of it. I wasn’t completely understanding her. I don’t think my brain was ready for what I was about to here.

After validation, it took a long time for it to sink in. I really lost my breath for awhile. I have no idea why there is such a stigma attached to having FASD.

Is it because it was a choice for me to have a life-long disability?
is it because it could have been prevented?


There are just things that seem to have something attached to it that makes it not seem okay.

I have had to do a lot of soul searching to not let it define me.
In fact, I think that it makes me a better person.

I know that does not make sense, in a lot of ways, but I have to tell you, there are things about me and others I know with FASD that I just would not trade for anything.

I am very passionate.
I am very loving.
I deeply care about people.
I am very sensitive.
I really, genuinely want to help people.
I want to work harder than anyone to work around my brain and find a way to do something that I have been told I am unable to do.
I have a deep passion for communicating in creative ways.

I did not speak at all as a baby. I was labeled failure to thrive.
Most of my childhood and adult life, I have heard that I simply do not get across exactly what I mean.
I would say I stayed mute a lot of the times and chose to because it was just too difficult to convey thoughts, feelings, and emotions in speech.

I don’t understand abstract very well. Trying to convey those things in speech is almost impossible.

I found writing, drawing, and photography very young.

I wanted to convey in the written word as much as I could.
I wrote notes to everybody if I wanted to tell them something. Even adults.
It just made it easier for me to say exactly what I meant.

I found the art of drawing was a release for me. I was able to capture a lot of what I felt in a creative art form.

When I found myself behind the lens of a camera, I wished the world could see things the way I did.
I took pictures of everything.
When I have a camera in my hand, I literally see beauty in every day life.

I see more than just ‘good’ beauty, if that makes sense.

I see beauty behind the pains of life as well.

As a journalist, I covered the hardest of stories anyone could imagine.

I covered murders and had to be up close and personal with those who were traumatized.

They let me in their homes and in their lives.

I didn’t love capturing their pain, but what I loved was capturing their love for each other in the pain.
I saw things a lot of others did not see.

The gentle touch from one person consoling another.
The wiping away of a tear.
The hug during a horrific moment.

I wouldn’t change that for anything.

There is a a fantastic things to being FASD.

We absolutely can LIVE and we absolutely can see LIVING in ways that others do not.

Actually, we are and can be very productive people that can be used in amazing ways.

I have had times when I have felt completely defeated.

Fortunately, that does not last long…lol. I don’t know if it is my short term memory problems, or the fact that I can forgive within five minutes of something major happening. it could be that I trust more than I should and that I have a more childlike spirit about me…lol.

Not sure.
But I wouldn’t change it.

I have had to learn to love me the way I am and be the best I can be with who I am.
Sure, someone drank when I was in their body.
Sure, it has affected my ability to read, comprehend, and retain things.
Sure, it has affected my eyes to the point where I have no depth perception and my eyes do not converge and I have to have specialists to take care of these needs.
Sure, I would prefer to eat a microwave macncheese every day of the week.

I am stronger than most.
I am more determined than most.
I am FASD…Hear me roar…lol.
I am FASD…I will soar…
I am FASD…I will not give up without a fight!

Learning how to do THE WORLD with FASD

I did a photo shoot on Saturday night and Sunday afternoon. For those us who live with FASD, it is so hard to walk into an environment with a lot of chaos.  A lot of noise. A lot of commotion. People talking. Very loud.

The event was held at a bar type atmosphere. I have been covering stories, as a journalist, for over seven years. I always have this thing about walking into a new place. It takes me awhile to get acclimated to my surroundings. My external brain instantly told me to calm down. She grabbed my camera and started helping me.

I told her, “I don’t know what to do. I don’t know where to start. I’m really overwhelmed.”

Those of us who have FASD have to be so thankful for those who step in and know when we need help. I rarely go anywhere ‘new’ without an external brain. Just having that person with me, instantly keeps my anxiousness level, down.

During the Saturday night shoot, my camera was not set right and I instantly felt anxiousness rise inside me. My body had already experienced a shock when it walked in the door from the noise and confusion. Fortunately, I knew what to do.

I have learned that living with FASD is a lot about knowing how to handle the environment around me.  I have learned to take a few minutes to breathe. Just stop and step away from the chaos, for a few.

Knowing what we need when we need it is VITAL to LIVING with FASD.  Understanding that OVERLOAD and MELTDOWNS are right around the corner if we do not take care of ourselves.
We are no good to anybody if we do not catch it in time. There are warning signs that overload is around the corner. I start to get agitated over small things. My skin starts to ‘crawl.’ Anxiousness begins to build.

Nobody knows yourself better than you…and an external brain. PAY ATTENTION.

I took a breather and paid attention to my external brain.  Those couple minutes, sitting away from everybody, can calm us just enough so we can reenter the ‘world.’

Our brains are absolutely not wired to take in a lot of stimulation. I have pushed through and before I know it, I am a zombie. Unable to talk or take in another second of sensory information.

I have hit the bed, after an event, completely unable to move. Those with FASD have to put forth so much energy in a day, it is like running a marathon.

These are the things I have learned for my own sensory health. Go off by myself. Turn off the lights. Turn off all noise. Take a bath. Put a hoodie over my head. TAKE A BREAK FROM LIFE. If you take care of yourself when its small, you don’t have to check out for days.

Also, get an external brain that is good for you. This is a person who can read you before you can read you. This person needs to have your best interest in mind when you go anywhere and they need to  make sure you understand all social and environmental cues. They know that you are looking to them for understanding, reassurance, and calm. They know when to step in and when to let you go off by yourself.

I have two, and like I said, I wouldn’t go anywhere NEW without them. They are my feelers. And most importantly, they don’t make me feel bad about needing that. They don’t make me feel NEEDY.  FASD individuals are survivors and determined. They are not needy. I had someone call me that before when they learned that I needed more help than the average person.

I knew that person was not good for me. My external brains are encouraging, empowering and recognize my struggles and give me credit for being determined when life is so difficult.

Surround yourself with what’s good FOR YOU and LEARN how to take care of YOU.

Regardless of what our brains want to do, we can work around it

Regardless of what our brains want to do, we can work around it. You know that saying, when there is a will, there is a way. There really is.

There is not a day that goes by that my brain works against me. I just find another way.

When I was in school, I was not able to understand the teacher. There were too many distractions and all I really heard was blah, blah, blah. I hear about every third or fifth word. I would always look down in school because I did not want to be called on. I know it looked like I wasn’t trying or paying attention, but I really was.

When I was in 10th grade, a teacher called me after class. She asked me why I was not taking notes in the class like the other kids. Guess what my response was?


I really didn’t know why I was not able to understand her enough to take notes. I saw the other kids writing like crazy, but I was back on her first sentence and I did not know how to tell her that.

I started taking a tape recorder in class. I started taping myself reading out loud when I was studying at home. I would play it back. I would reverse and reverse and reverse until I heard it. I would then write it down in a way that I could understand it. That is what I studied for tests.

It took me about five hours to do the homework when my friends were done in one, but I was determined to get that grade. That grade was not an A. It wasn’t a B.

I generally worked that hard for a C.

I got that C because I turned in my work and I made a valiant effort to do the work.

I was not able to retain it for very long, but I would try to remember it long enough to take a test.

I found a way around my brain.

Today, I still have problems. That does not go away. I ask people to talk slower. I ask them to repeat all the time. I try to get every word and I ask what does that mean a lot.

When I watch a show with family, I simply ask them to pause to explain so I can be where they are in the story.

You have to get past being embarrassed. You have to get passed needing to be where everyone else is. You have to be willing to be okay with who you are and not be ashamed.

I know. I still struggle with wanting to be like everybody else in the room. I still want to understand and communicate like the average person.

I had a roommate in college. She did not even study and got A’s. I studied around the clock for the C that I deserved! I was happy when I saw that C on that paper because to me it said A. I had earned it. It was all mine. I was proud.

Living beyond our limitations

I had the amazing opportunity to write for Jeff Noble with FASDForever website. He asked me to write a blog from an adults perspective. This is what I wrote.

Because of the response I received and the amount of people I can that it helped, I want to continue to write about FASD. I want to continue to offer hope that are living with this dreadful disability. Key word: LIVING.

It is possible to LIVE with FASD. It is not a social death sentence. We absolutely can live beyond our limitations! We are so much more than what the doctors say. They only see where the brain is malfunctioning. What they don’t see is our determination to make it beyond all that. No matter how many times we are told we cannot do something, we will try that much harder to make it happen.

For a long time, I thought I was autistic. I actually had an easier time accepting that fact. When I heard that what was actually wrong with me was I was FASD, I lost my breath. I’m not sure why it affected me so much deeper, but it hit me to the core of who I am.

It actually made sense to me. I knew my biological mother had issues and had drug and alcohol problems, in those days, but I never linked that with the day to day struggles that I have. It was hard for me to realize, no matter how hard I worked, I would still have these disabilities. I am an overcomer.

The hope came in when I realized all my life I had been compensating for my disabilities. I learned how to learn. If a thousand ways did not work, I found one that did. I would not give up until I made it happen. I might spill everything along the way. I might not understand 80% of what goes on around me, but I am still going to be the best I can be, regardless of these disabilities.

I had two choices when I realized I was living with FASD. Number one, roll over and let it beat me. Number two, LIVE and no matter what, never let it beat me.

I am very anxious to do things on my own. I find external brains to go with me or I go a path I have always gone.

I have passions that are so deep that it bleeds through in everything I do. I decided to take those passions and see if I could make money from them.

We might not be able to do what everyone else can do, but they cannot do everything we can do. Many of them do not see the beauty in the world, like we do.

I stop to smell the roses.
I look up to watch a plane.
I sit in the dirt and still play.
I watch the beauty of nature with the eyes of a child.

I wouldn’t want to change these things at all.

Today, with FASD, I LIVE. I offer hope to those who think they will never be able to make it to tomorrow. I offer strength as one who has already gone before and proven that no matter how hard it is, you can do it.

If I can get a masters degree when they told me I would not even get a high school education, anyone can. I did not let my disability rule me. I had to be more creative.

I could still keep my dreams and aspirations. How I got there had to change a little, but I still got there. One frustration at a time…lol. Yea, I’m still working on that one.

I didn’t say it would be easy, but it is possible.