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New routines

I have been hearing a lot about FASD kids going back to school and adjusting. I just read a post on an FASD teen going off to school and the major adjustments she is having to make cuz of all the change. She wrote,…


I know for me, whenever I experience an extreme change; I get uneasy and it will take me a couple weeks to adjust to a new routine. In overload mode, I crash and hard. Its the overload of new people, new expectations etc.

I just started a new job. As an adult with FASD, I can say the feelings of overload are just as much there now as they were as a kid. I don’t think the feelings and overload are any different. The only difference is how I deal with it differently. this week was one of my hardest weeks in a very long time. My routine was different. Everyone around me during the day was new. People I dont know at all and I don’t trust. Even if they told me they are really amazing people and I should trust them, it will take some time. Being FASD, you need people around you who you can look to as external brains. I constantly rely on others around me. I look to them to tell me what I need to do. I judge their actions and facial expressions to let me know if something is unsafe or ok. I have the inability to judge understand a lot around me. It is crucial that I trust the people in the room who are guiding me for that moment.

Change is a scary thing. Change alone can make stress go up so much for us that we can fight overload immediately. I spent the week in a new job and then spent the weekend totally consumed in busy. My skin has been hurting so much the last day, I could cry. I start work again tomorrow and it will be completely busy all week again. I know that my down time needs to be absolutely priority for this next week or I will hit a wall.
Today I was out and I was talking with someone and I did just that. My entire body had like this what I call short circuit in the brain. It is literally from too much overload on my body. My mouth just stopped and my entire being just stopped for a few moments. it was so hard for me to come out of it. Normally, I would just go off and recover from that, but I couldnt. I took about 20 minutes before I said anything to the people I was with and then I gradually came out of it. When that happens, I know that I have pushed it beyond my limit.
Staying quiet and being completely focused on what I need to do to not take overload into a meltdown is crucial for the next week. Fortunately, I love the new job. I am currently organizing the office and for me, organizing is a calm.
New environments. New people. New assignments. Trying to understand the new around us. Trying to figure out what we are supposed to do next or even first. Trying to figure out how to execute in a new place outside of our routine…All very very tough. 
For those caregivers, I feel for you. Patience is the best gift you could give all of us. Let your FASD person do what they need to in order to calm. Anything repetition that works for them would be good. Someone told me today that a person they new who had autism just would comb and comb her hair and it was calming for them. I know for me sometimes it is writing or a bath. Also, leave more room for error. Frustration is already up and when that happens, there is more chance for misunderstanding cues and knowing what to do. As we settle and new routines become just a normal routine…we will be good…But it takes time.

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We are as good as our last five minutes…my story

When I was a kid, I was different. I didn’t look different. I was just different. I always had that feeling of being on the outside looking in. I had periods of when I fit. Not many. I didn’t even feel like I fit in my own adoptive family. I felt awkward.

I was quiet.

There were periods of my life that I fit or I guess you could say, I thrived.

When I was in a pool or a pool environment, I was in my element. I could do anything. I could talk shop I guess you could say. When I hit that water, there was no feeling like it. Plus, there were very few times I lost. I belonged to a swim team. I belonged to a relay team that was probably one of the best in Ohio.

People respected me in the pool. I would get out of the water and I was someone.

I was good in music. When I got older, I found myself in the band and I did quite well. I was first chair clarinet. Tuned the band every day. It was another place where I belonged. I wasn’t popular, but at least, I belonged in a group.

I was still quiet. I was still never the life of the party. I still stood back and watched everybody else enjoy. I was always afraid. I was always timid.

I decided to give my love for acting a try. I went on stage. I did plays in high school and on the side. I was actually good. I really enjoyed it. I loved being someone else different than me. I had people clap for me. I felt a part of. Putting a play together and being a part of the camaraderie with a group of peers was really something for someone like me.

You know, its not that we don’t want to be a part of. Its not that we dont want to be a part of society and do what everybody else is doing. We want to socialize. We want to jump in and do what everybody else is doing in the room.

We simply don’t know how.

Those are some of the things that saved me growing up. I look back at those times as some of the best times.

We all want to belong.

People with FASD have a hard time finding places they fit.

That feeling of being on the outside looking in is not fun.

There was a time in my life that everything seemed to fit. I was on top of the world.

I had the best dad in the world. He loved me more than anyone. He was my adopted dad, but he was God to me. He was everything. I was one of the best swimmers in the area and I traveled to other states to compete. I looked forward to that buzzer going off and me being able to exert my energy in a positive way and win…or come close. (Of course, I’m FASD…I have to win every time…lol. Perfection is the goal.)

Well, when I was 11, my world ended.
You know us. We don’t like change. We are not good with it. Routine is our friend.

My dad died.

My world as I knew it ended.

Everything ended.

Nothing mattered anymore.

That window of looking in at the world became more distant.

The only thing that saved me was alcohol.

Funny.

That was how I started the world and I found solace in a bottle.

Sad.

I was only 11 and started drinking. My adopted mom worked and I had the whole house to myself most of every day. My sister who was my…well long story…which I still don’t understand…all I know was I loved her about second on the list and my adoptive mom gave her up to foster system. “She was bad.” That’s what I was told.

It is such a long story. I don’t need to tell it right now. Like I said, my world was over. My dad was gone. My sister was gone. Swimming didn’t matter to me anymore. My adopted mom spent her days at work. I found myself in trouble.

What we want more than anything…and I can only speak for myself, (but I’m going to use we) we want to feel accepted. We want to be a part of. We want to feel like we are important. We beam over the simple things. Just ask us to help. We want to. Just ask put your arm around us and say “Good job.” We thrive on that stuff. We want to contribute to society in the most positive of ways.

I was the most confused kid. Nothing made sense. Not a lot makes sense to someone with FASD to begin with, but when my entire world was taken away from me…well…I had no idea what to do next.

I went from one of the best swimmers in the country to not even having the want to go to practice. My dad was not at the end of the block anymore with a towel to wrap around me. I no longer saw the proud look on his face when I won.

I didn’t have as much of a will to work in school. The following year, in 7th grade, teachers had no idea what to do with me. The school even wanted outside counselors and anyone to help me. I became quieter. My world became smaller. I looked around and I didn’t fit anywhere.

After my dad’s funeral, which I believed I was responsible for the fact that he was buried alive. I swore that he was still breathing. I sat in the funeral home and watched his chest go up and down. I tapped on a couple people to tell them, but they would not listen to me. When they buried him, I believed with all my heart that I let him be buried alive because I could not find the voice to tell anyone. I tried, but the more I tried the more I got shooed away in nonsense.

But back to after the funeral…I was in the living room. I can remember it like it was yesterday, I had no idea what to do next. I really was a confused kid. My aunt, my dad’s sister came up to me and said, “Ann, you need to be there for your mom and be strong. After all, he was not your real dad anyway.”

My world was crushed. She didn’t mean to hurt me. I really believe that. She was one of those people who just said things without thinking. I loved her dearly until she died, but those words are still with me today.

I shut down. I didn’t feel a thing anymore. Nothing could penetrate me. I stopped swimming. My grades were just about F’s. I drank on the side and I was only 12.

All I wanted was to fit in. All I wanted was for someone to come along side me, put their arm around me, and help me through life. My adoptive mom was too busy for that. Plus, she and I never really talked about anything after my dad died. We grew more and more apart. When she got rid of my sister, it was a wedge between the two of us until the day she died in 2008.

FASD kids have to face a lot of hardships. We have to face the fact that number one, our biological moms drank and that is why we are different. Number two through a hundred, we have to face the fact that we were abused, rejected, or given up into the system (many of us) and those are hard truths for those who do not have FASD, but put FASD on top of that and…wow…its hard.

I went to an older cousin of mine, at the funeral home, and asked her to sit with me. “I’m busy, I have to go,” she said.

I tried to get teachers to notice me. Some positive ways. Some negative.

I just wanted to belong. If there would have been adults who came along and said here we have this job for you come here and help us and they include me…I would have maybe found my way back.

I ran away from home. I continued to drink. I found myself in a world of a mess because I never felt that I fit. I never felt that I was understood.

I do have to say…in spite of it all. I never gave up. I know that does not sound right. Like I have said in previous posts, I am one of the most determined people in the world and even though I continued to drink…I wanted to make it.

I found it within me to get better grades. I dug down, inside my soul and found my way back to life.

There is one thing that I believe is univeral with people with FASD…we want to make it. Regardless of what goes on around us…regardless of how bad life is…regardless of how many hurts, pains, and rejections. We want to make it.

If anyone reading this can come along side a kid with FASD and try to help them feel included, then this was worth it. Give them a voice. Let them be heard. Give them a job to help you. Put your arm around them and say…”Good job.”

Call them family. That’s what we want. We just want to be included in family. We want that love and affection that so many have been born into naturally. Don’t ever exclude someone with FASD…it hurts…more than you know.

That window that we look through only grows dimmer and gets more and more distant the more people make us feel different.

Many of us were born failure to thrive. I was. The last thing we need is a reason to go back to that. We want action. We are constant thinkers. Our brains never turn off. It  can all go in the negative direction if we are not embraced by the positive.

Find the small things and smile at someone FASD. Make them feel like what they did was the most special thing in the world. We want to hear, “I’m proud of you.” We want to hear “Nice job.”

The more positive…the more we go toward the positive.  The more negative, the more we shut down. I heard a statement once that I believe is a million percent true. We are as good as our last five minutes…Wow.

Wow.

Let’s help people with FASD have a great next five minutes!

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.

Rethink
Reteach
and RESPECT

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

The SPIRIT of FASD

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?

Maybe.

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!