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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

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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.

Left eye Right eye

When I was five years old, the neurologist said I had no depth perception and my eyes do not converge. In other words, my left eye and right eye, do not work together. I have learned that my left brain and right brain do not work very well together either.

I was told that I would never be able to hit a ball. I hit home runs. 
I was told I would never be able to cut on the line. it took a lot of work, but I have no problem at all with that anymore.
True I still reach for the refrigerator and miss the handle…every time…lol.
BUT, for the most part, my brain has adapted. 
My left eye and right eye have never been able to work together, but my brain has compensated in a way that I don’t think anyone figured in. My left eye basically stopped working. I can see out of it, but my brain has shut my left eye off enough for me to see one of everything. This has allowed me to do things I never could have done. 
I was not able to read until like second grade. The words were all jumbled together. All I saw was lines of letters with no breaks between words. There was no making sense of it to me. Now, I read fine. I still have problems with comprehension, but I learned young how make up for this. I read into a tape recorder and listened to it until I understood.
Yes, we have disabilities…but yes there are ways to make up for them. 
We just find different ways to do the same thing others can do.
God gave us creativity!
God gave us determination!
We figure out ways to learn, retain, and comprehend…to the best that we can!
That’s awesome! 

Structure brings productivity in FASD individuals

I have learned something huge lately, I am no good without structure! I absolutely do amazing if I just have structure. I would work all day on a project and not even want to take a lunch. Lunch to me, is unstructured time. I can eat through lunch, but why stop. When I stop, I feel like I don’t know what to do. You would think eating would be what I do, but I sit there trying to figure out something else to do. I either get on the computer or put a puzzle together. I can’t just sit and watch a T.V. show. I am not good at downtime at all!!! I will work all day until I paint an entire room. I will work until a project is done even if it takes days. I will stop to sleep, etc. but I get right up and busy. I love it!

Structure makes me feel healthy and vibrant and keeps my brain focused. The second I have to come up with something to do. I’m done. Give me a list and I’m great. Tell me to find something to do and I will be the most ADD you will ever see. I will hop from thing to thing to thing and get nothing accomplished. Oh, I will stay busy, but I will forever be lost.

I just started a new job today. I am not good with anything new, but this went well. It actually fit me perfectly! I just did things that were given me and I could do that all day. If my job is to make someone else’s life easier and they just keep giving me lists of things to do–I’m good! I’m great! I thought about just going to a store and stocking shelves all day cuz I know the time would go fast and I would probably be the most focused one there and not even wanting to take a lunch. Organizing and stacking and building something like Lego’s is the kind of busy work that I love. I also love doing things on the computer like blogging.

If I am left to my own, I seriously could tell you I was busy the entire day, but I have no idea what I got done and I leave my day frustrated!

Structure is so important to me living with FASD. I am not lazy! I am not unmotivated! I just dont know what to do when. I have lots of ideas, but I’m not good at executing. BUT tell me exactly what to do–and I’ll work the entire day until its done! AND I’ll be happy! AND I wont be frustrated! AND I won’t get into trouble and look in areas where I could get in trouble…lol.

I seriously could work the entire day and not even feel like it was 12 hours. The time just goes so fast cuz my brain is just so into what I’m doing that I dont even know that several hours went by. Give me those same hours with no structure and with me as the pilot of my day…lol….I’m in trouble!

I guarantee if you give someone with FAS a list of things to do, they will get it done and do their best.

I know there are things on this job I’m going to run into that I don’t know what I’m doing. I said to myself, I might not be able to, but I will do my best and my best is all I can give.

Structure is key to a happy FASD person! AND happy FASD caregivers and external brains!

Dear Teacher

Dear Teacher,
I have FASD. I have a hard time hearing everything you say. I try, but sometimes I just don’t understand. It’s hard for me to understand the directions you say. Lot’s of times I forget as soon as you say what I’m supposed to do. I look at others, not cuz I want to cheat, but cuz I want to know what I’m supposed to do next. I know it seems like I’m not paying attention, but I just don’t understand.

I’m not lazy. It seems like I dont want to do my work, but I do. I’m just not sure how to do it. If you tell me exactly what I’m supposed to do a couple of times, I might understand better. You might have to explain it to me with no one else around.

My senses are really sensitive. Sometimes I need breaks from the classroom. Sometimes, I need my own time out from the chaos in the room. It’s hard for me to process all that goes on.

FASD is fetal alcohol syndrome. It just means that my mom drank when I was in her belly. It doesnt mean I’m less than the other kids in the class. I am still very creative and very fun. I love to learn and I love to work. I will always give you my best. I promise and I keep my promises.

FASD means that my brain is not like the other kids. It is wired a little differently and I have to find my way of learning. I have to learn how to learn. Work with me cuz I’m trying to figure out what works for me. If you do it with me and stay patient with me I won’t get as frustrated. Let me know how proud you are of me that I’m working so hard even if I don’t understand and constantly focus on what I’m doing right. Oh, you can tell me what I’m doing wrong or what I’m not understanding, but remind me that I’m still a great kid even if I did something wrong.

See, I’m extra sensitive. My brain just has a hard time understanding so I get so confused with what you are saying or what you are expecting that the harder I try, sometimes my brain just shuts off. And if you get frustrated with me, I think I’m doing something wrong when I’m really trying to give you my best. Do you know what it feels like when people are upset with you and you don’t understand why? You are doing everything you think they want you to do but you are still doing it wrong?

I cry a lot inside. I want to be my best for you and for my parents. I want everyone to be proud of me.

It’s okay to make me an IEP. Call FAS what it is. It only hurts me if you don’t. If I get the right diagnosis, then I get the right helps.

It’s okay that I have this thing called FASD. I can’t change it. It is what it is. Just please don’t make me feel different. Don’t make me feel like what my mom did was so wrong that I feel bad about who I am. Don’t make her actions be who I am.

Thank you,

Your student

FASD–my story

When I was five-years-old, my kindergarten teacher discovered I had significant problems and was unable to do what the other kids could do. She informed my adoptive parents that she felt something was seriously wrong. A neurologist was contacted and my kindergarten teacher’s instincts were accurate.

“Ann has significant and permanent brain damage. It is in an area of the brain that will affect comprehension, retention, and her eyes. Her processing is affected and I doubt she will even be able to graduate high school.”
He was right about what was wrong with the brain. What he did not factor in, was my determination. Nothing kept me down. I found ways to learn and ways to get around my disabilities. The more I heard I couldn’t, the more I said I’m going to find a way.
Forty years ago, they did not connect these disabilities with FASD, but we did not know my biological mom drank during pregnancy. A genetics doctor confirmed that it was FASD. 
I like to tell this story because I want to offer hope. There is so much negative out there about the diagnosis of Fetal Alcohol. Yes, it can be preventable, but what do we do with those of us who are already here. There needs to be more helps and more services and we need to start calling FASD what it is. It is a birth defect! Nothing less! Until we call it this, the schools will not be able to put list it on IEP’s. The right kind of services from Developmental Disabilities and doctors, eye doctors, etc. will not be available.
I sat in a class of other five year olds and was not able to cut on a line. I was not able to read until much later than my peers. I still have a great deal of difficulty seeing like others because my eyes do not work together and I have no depth perception. I do not understand a lot that is said and I do not process very fast. I have to be told things more than once and I have a hard time keeping out background noises. My skin hurts at times and I even want to take off all my clothes because nothing helps. I have routine. I don’t like very many foods. I have my normal likes in what I eat…what feels good in my mouth. I would be good eating my macncheese and peanut butter cereal and pasta for the rest of my life.
I don’t feel a lot of pain. For some reason that part of my brain is shut off. My balance is off. My dad built a balance beam in my basment to help with that. I had to wear an eye patch for eye problems. I had some helps, but after my dad died when I was 11, my helps pretty much died. My life changed…for the worst.
If anyone knows FASD, we do not like change. We do not transition well and loss is horrific. My dad was the closest person to me and he was my safety and what I would have called my EB (external brain) when I was a kid. His death changed me forever and I honestly believe I have never been the same.
Swimming had been my saving grace until my father died. I stopped that abruptly after. Everything stopped. My adoptive mom gave my adopted sister away because she was unable to cope and life got worse. It seemed like I was unable to do anything right and my grades went to F’s and D’s.
The schools said counseling was the best option. I was forced to go talk with someone, but my mouth did not work. My FASD affected my speech and speaking goes with stress and my brain shuts off. I don’t think I said a word to that counselor in the year I saw her.
I continued to go inward. Drinking became a part of my life. I would do anything to numb. I continued to find myself in situations that were not good for me. It was amazing I am alive.
Looking at this, I have realized that the reason all of this happened…I had an FASD brain and I was left to find my own way. My adoptive mom worked many hours, my dad had just died, my sister was put into foster care, and I had a brain that went into shock. I honestly believe if I would have had a good solid, external brain who was safe and who was looking out for my well-being when I was 11 years old the rest of my bad decisions would not have happened. I didn’t want to go in those directions. I was hurting and I had noone around me to guide me and to listen to me. Noone to pay attention to the fact that I was going in the wrong direction. 
External brains are so crucial to the existence of FASD people. We rely so heavily on those around us to be safe and to guide. Half the time, we don’t understand what is going on in the room. I constantly look to the people in the room to know what is going on. I would look to my peers to know what to do next for assignments. No, I was not cheating. I look to people in groups to know what is being said and done. I look to others to know if it is a safe environment or if there is danger. We really don’t know a lot of the times. We often find ourselves in dangerous situations and trust people we shouldn’t because we don’t have that thing in the brain that gives us a heads up. We are very trusting and we believe in people. We also forgive very easily and don’t learn from our hurts a lot of time and keep going back for more.
With all of this said, we are amazing people. I really believe that God has given me amazing talents and gifts with this disability. Things I would not trade. People have asked me if I would want a neurotypical brain. The answer would be no. I can sense things in people…I see a tear before it falls, I can capture life behind a lens of a camera beautifully, I am an award winning journalist because I have been able to capture heart-wrenching stories with the written word. 
My talents might be different than other FASD folks, but one thing we all have…we all have the ability and determination to take what we CAN do and make it exceptional!

thanks for reading and supporting the cause of FASD
Ann Kagarise

Square peg

This fits for those of us who are FASD. So many times society wants us to fit into society the way they fit. FASD people are absolutely that different peg. We come in all shapes and sizes and we don’t fit into society’s norm. I know personally employers, friends, and even family will try to shape us to fit into what makes sense to them and we are simply wired differently and it ain’t happenin…lol…
The best gift anyone can give any of us with FASD is meet us where we are, love us right where we live. We all need to change and be shaped in life. Nothing wrong with that, but do it with us and accept our disabilities and allow us to function within those parameters.  Frustration is not our friend. When we feel like we need to be different than who we are or the people around us don’t understand us or that the harder we try, the more we disappoint you, meltdowns will occur. 
If we know you will allow us to be who we are, that we don’t have to be pounded into a shape that fits for you, then frustration will be down and growth will be off the charts.
We want to please! If we know you are not pleased with us, then we are crushed. Our entire being wants to be accepted for the square peg that we are. Square, rectangular, triangular, many shaped forms of FASD..
The world is blessed with many different shapes and sizes of people. Our creativity and love for others is so deep …that could be lost if you try to conform us into the rest of society. FASD individuals have a lot of great gifts and talents!!  We are great contributors in society!!