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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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I AM FASD FASD IS ME

I was with a child the other day who is autistic. He was in a group of other autistic children and he asked what someone’s disability was. The answer was he is autistic.  The kid who asked lit up from ear to ear and said, “Autism is me.” I beamed with him. He was so proud! He said it all in his entire body how he felt.  He was not ashamed. He didn’t feel the need to hide. He was proud of who he was!!
I think of how many of us would say FASD is me. AND beam from ear to ear and want to shout from the rooftops who they are. Doesn’t mean that is all of who a person is, but is a part of who they are and they are proud and do not feel a stigma or ashamed.
A girl from this group was asked to fill out a questionnaire about who she is. What’s your favorite color, etc. She was asked, “what do you want people to know about you?” She answered that I have autism. Another question was, “If you grow up to be famous, what would you like to be famous for?” This child didn’t even hesitate. She wrote that she wanted to be famous for having autism. I instantly thought of Temple Grandin. She is known for having autism. Plain and simple. She is known for paving the way for so many and showing them that even though she has it, she has made a difference in the world.
How many of us with FASD want to be actually known for FASD? How many would sit in a group and point to themselves like that little boy and just say, “I am FASD.”
I want to be known for having it.
I want to pave the way and show that even though I have it, I can still make a huge contribution to society.
Even though my brain does not work like everyone else…I still might not be able to always talk like everyone else (but I find ways to talk)…I might not be able to sit by people cuz if I do, the rest of my senses go into total overload, but I sit far enough away that I can still think…( I just figure it out my way—it works)…I might have a hard time with my brain processing…but I have the ability to read emotion like no one else and connect at a deep calming level…I may look at you and not find the words with my mouth, but I find the words with my eyes and soul…
I might not be like many…but I am like some…and our some is growing and growing….unfortunately
Us some have to stand up and say, “I am FASD and look at me. I am making a difference. I am proud.”
Proud that our moms drank when she was pregnant with us? NO
Proud to be! Proud to connect and love and feel and make a difference. Proud to do in spite of all the tests that say we can’t. WE are determined and fight like no other to survive.
I AM FASD! FASD is me! Thanks to these kids for showing that it’s okay to be who we are…all of who we are…and still beam from ear to ear…and be proud!

I resemble this remark!

LOVE! LOVE! LOVE!! This is perfect!! I cannot tell you how this fits us FASD folks! I could work all day and not be bothered by the talks and gossips of others. I just want to stay focused and do my work. People gossip, which I have never been one to be bothered with gossip. Nor do I think its right. There is so much more positive things to do in the world than talk negatively about others and spread rumors. I know socializing is important…but, I would rather do the work assigned than socialize. I love being productive! In fact, when I’m not, I feel lost, I feel sad, I feel stuck! Just give me something to do and I’ll do it till its done! Temple Grandin is such a great representative of those with neuro disabilities! She has accomplished and overcome so much in her lifetime! I had to post this quote because I sooooo relate to it. I was the photographer for a kid’s cancer camp in July. I worked the entire week and just stay focused. I had objectives. To take pictures and to put them together for the camp and a slideshow for the parents at the end of camp. I probably worked 12 hour days easily for 6 days straight. it was hard for me to take a break. I just wanted to do the task and not be bothered…lol. I’m that way with every job I have. I would just rather work than talk…lol…
FASD individuals can be very productive individuals. The one thing that makes me so upset is the constant negative that is out there! There is soooo much good about us and you would find if we are kept productive, there is less chance of problems. I know for me, I want what everyone else wants. Love, acceptance, and to be a productive, positive citizen. I love helping others. I love connection. Yes I do! I love doing! Not doing is idle time… Just like my blog the other day, having structure with lots to do makes for a healthy, happy Ann.

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! 

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!!