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How do I say this? Yesterday pretty much knocked the wind out of me. I can do two things with it. Either I can let all that the neuropsych guy said and let it take me down for the count or I can continue to do what Ive always done and let it empower me even more. I prefer to let it empower me. He even said “hats off to me with all I have accomplished.” I have proven even more to myself that most people would not have accomplished all I have with my brain. I just never saw that ‘not’ doing it was an option. When they told me I would not graduate high school. I just said watch me get a masters degree. When they told me I would never hit a ball. I said i will practice until I get homeruns. I could go on and on. I have always found a way to compensate. If I cannot do it this way, I will find another way. I am one determined mother ______. if I can say that. I am having a little bit of a hard time today. I never expected him to say a couple of the things he said. Trying to process.

I looked up where my IQ falls. It basically described me to a tea. I was surprised. This is what the definition of it said under the IQ I just found out I have. Above the threshold for normal independent functioning. Can perform explicit routinized hands-on tasks without supervision as long as there are no moments of choice and it is always clear what has to be done. Assembler, food service.

I know that as long as my day is without choice and everything is spelled out to me from the first moment of my day until the end, I am anxious free and fine. Give me choice and give me a day where I am just supposed to get thigns done but it is open ended…I will accomplish nothing at all. So…it is exact. That made me even sadder. I thought I had a higher IQ. But the thing is they figured in my working memory which he said never developed and my adaptability or whatever that is never developed. So with all that said…he did mention disability.

You know, I’m a tough one. I will never ever give up. When he showed it to me, I was not really processing it. I didnt even hear the number he threw out there for my IQ. My friend, who went with me, mentioned it later in the meeting and I said, “huh?” I said thats my IQ? thats really low.

I looked at his paper which showed in a nutshell that without a doubt 100% I have Autism and some of the stuff that was in there with all the cognitive stuff, etc. could have happened in utero. Hence what I thought with the FASD stuff. But he did add say that the social component does not have to always be there to the extent that I have it with ASD. That the social anxiety with my ASD is so off the charts that he actually gave me that diagnosis as well. So,…this is another day.

Just a day.

I said to him…well all I want to know is how I make this all stronger. He said give me one thing you want to work on. I said my memory. I have like a very low ability to do short term memory. After repetition I can retain things a little better. that is why it is harder for me in the reading, as well. But I have a great word knowledge…I knew that…lol…and I can write…woohoo….

But the ability for comprehension and retaining I do need to work on so he said I need to work my brain because it simply did not develop. The frontal lobe part of my brain did not develop wehre I can bring forth information, etc…

Anyway, he said go to luminosity.com.

You bet I will.

I will do whatever I can to make my brain stronger.

This was harsh news, but news that I know will just make me stronger.

And I said to my friend, it just proves how strong I am. How I was able to accomplish these things that I never should have been able to. I just found another way.

And I’m not going to stop.

just another day.

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Aside

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

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

Proud

Being someone with FAS is a conglomeration of emotions. I didn’t find out until I was an adult. I knew I had significant disabilities. I Knew what neurologists said, but I stayed in denial for a very long time about how significant. I mean, does it really matter what the professionals say when you weigh in determination and heart? No, not really.

I know they know all the medical reasons to why I do the things I do. I know they can explain why my upper lip is thinner and why the area between my nose and lip are flatter than its supposed to be. They can tell me why my pinkys swerve inward and why my eyes are the way they are.

When the genetics doctor looked at me and said alcohol played a significant factor to your disabilities…its like the world stopped. She didn’t even hesitate. She knew. She looked at my baby pictures and looked at me as an adult and she didn’t even have to do further testing. It wasn’t even a maybe.

There is a spectrum in Fetal Alcohol Syndrome. To find out that you are full blown FAS made me face some hard realities.

It did explain a lot. it connected dots for me. I understood why I had struggled my whole life. Why I couldn’t DO things other kids could do growing up. Why I was not able to function in the adult world like my peers. Yea, I got it.

It made me face some hard realities. DD? Developmentally Disabled? Really? Get a social worker for me so I can get services for being FAS?

Thinking you are FAS is a lot different than a professional looking in your eyes and saying “You, without a doubt, are FAS. That is a whole different level of acceptance.

You know, at first, I don’t even know what I felt. I know I got quiet. Didn’t feel like talking about it. Felt loss, grief.

To know that you will NEVER have the brain that others have. To know that I will NEVER be able to overcome these disabilities. To know that my mom drank and that is the reason…

Cry.

Hard things to face.

I believe that my biological mom didn’t do it on purpose. Forty years ago, they didn’t know the stuff they do now. Plus, she was not one that would have been taking care of herself. Didn’t matter to me. I loved her until she died. I was loyal to her. Even though, she never really recognized me as a daughter, I still recognized her as my mom.

FASDers have to face a lot of different obstacles besides just the disability. Hurts, rejections, and abuse often come along with it. Many of us are adopted young to great families and the hurt stops, but some of us are not.

Some of us have a lifetime of pain, abuse, and continued rejections.

I grieved for the fact that there were losses here. With my biological mom and the fact that I have had to face that there are simply limitations that will never be fixed.

Is this negative? Gosh, I hope not. This is real.

Do I feel less than?
Do I feel a defeat?

NO!! I feel absolute accomplishment.
I feel pride.

I have made it in spite of.
I have surpassed all expectations and I’m not done yet.

Knowing what I have accomplished with this brain makes me even more proud.

Sometimes, I smile just because I say exactly what I want to verbally…lol. Often times, what comes out is just not how I had planned it.

Sometimes, I am complete joyful because I made a meal for my daughter and EB and it was amazing.

The small everyday things makes me know I’m making it. I’m functioning like everybody else. I can do this!

Oh, the big things? Getting my masters degree when they said I wouldn’t graduate high school? Driving when they told me I never could because of my eyes.
Hitting home runs when they told me I would never hit a ball.
Becoming an award winning journalist when they said I would not be able to communicate well.
Being a great mom when I had so much against me just as an individual, let alone take care of another.

I’m proud!
The determination I feel when I wake up in the morning to beat the crap out of the day a head of me is what drives me.

The exhaustion I feel even sometimes mid-day lets me know that I am fighting one hell of a fight.

No, I’m not ever going to let any disability beat me.

Realities can hurt. They are painful.

BUT…

They didn’t see me coming…

I told myself I was going to be the BEST ANN I could be.
I told myself that I was going to LIVE.
FASD or not…I’m going to BE.