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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

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!

FASD acronym

Who are we? What are we? Let’s break it down letter by letter.
FETAL ALCOHOL SYNDROME DISORDER stands for…


Feels deeply, forthright, fabulous, fun-loving
Excited about life
Talented
Achiever
Loving, LIVING

Able
Loveable
Courageous, creative, curious
Ornery
Hopeful, happy, hilarious, honorable
Ambitious
Likable

Sensitive
Youthful
Nice
Dedicated,
Resilient
Original
Motivated
Energetic

Determined
Imaginative
Sincere
Optimistic
Remarkable
Dynamic
Enthusiastic
Rich

Fits…surrender…acceptance

I had it in my head that I was going to go to the flea market to sell my photography. Last week. I had just about everything ready to go…except for me. I got hundreds of photos ready, framed and matted 30 of my best prints. My external brain helped me to think about everything I might need. We got order forms for special orders, a calculator, grocery bags so I can bag items I sell, extra money for change.

I put together calendars, mugs, notebooks, and other items to sell. My external brain helped me make a display board. I got a table for the display and filled two picture books filled with my photography for other options. 
I thought of everything…I thought.
I was getting ready and felt my anxiousness grow. I started thinking about talking with people, doing math on the spot, figuring different orders, and where to park. I knew my senses would be heightened with all the people, etc…which would add confusion. AND I knew I would be doing all of this without an external brain.
Now, I know I have said I don’t do anything new without an external brain, but I really thought I could do this. I mean, I did have it all mapped out. I have this thing about picturing things before I do it. It works a lot of times. 
I was a swimmer and a swim coach. Swimming was one of the things that calmed my anxiousness. Going underneath the water and being consumed by water from all sides so relaxing to me. A sensory thing, I’m sure. Like a weighted blanket feeling. I would swim for hours and I was good at it. (Not bragging…lol.) Hey, when I struggled at EVERYTHING in life and I finally found something that I could actually DO without struggling…I was thrilled!
As a coach, I had my swimmers close their eyes and picture themselves winning. We would do this leading into major meets. I would start them from the gun. Stroke by stroke they would go through the race with a win at the end.
I am an absolute believer in if you are determined and work hard enough at anything, you can be successful! I live it every day and so did my swimmers. 
Now, here I was, the night before I was supposed to sell my photography, by myself, at a market….I freaked. I pictured myself doing it. Over and over. I walked myself through all the steps. I paced. I tried to work through. My anxiousness did not subside.
My external brain (EB) saw that something was not right. I finally told her. I was even thinking about keeping my 16-year-old home from school to go with me the first day. My EB said, “why don’t we just go Saturday. The three of us will go. We will see what it’s like, figure everything out together so you are not so anxious. We will do this together.”
She asked me why I didn’t tell her. I told her that I wanted to do it myself.

I always need help. This time, I wanted it to be different.

See, FASDers DO NOT want to rely on others. We WANT to do it on our own! 
Surrendering that is soooooo hard!
I’m an adult. I want to do adult things…by myself. 
Oh, I got the routine stuff down. I can do that stuff all day by myself. I love the independence. I have no problem shopping in the same stores and going to the same coffee house. 
BUT…
Throw in something new…and I’m done.
I started to have my own little pity party. I even started to cry. I had to get to the point that I was okay having someone do this WITH me. I had to let myself get to the point where I would ASK FOR HELP.
I am not the best at asking for help.
“I CAN DO IT MYSELF” I want to scream.
Reality sinks in and I have to look at myself in the mirror…and again…surrender some tough stuff.
I can do anything the first timewith help.
Once I can rid of all confusion in a situation, it can become routine and eventually I can do it on my own.
I found myself angry. I got pretty upset that I HAD to ask for help.
I had to be okay with who I was and this disability.
Doing anything new is scary for someone with FASD. 
Yes, we might throw a fit about it.
We might get angry because honestly…we really want to do it by ourselves.
We are actually pretty smart people…we just have a brain that doesn’t work like everybody else.
AND we are smart enough to know this.

We watch everybody in the room understand what’s going on when we are confused.

We KNOW we can’t process like everybody else.
It takes us longer. We DO know that.
That is why we have to surrender to the fact of letting someone help us until we get it.
Once we realize that you helping us will help us get independent in a certain area, we are going to work that much harder.
We give 110%. 
Always have.
I was always one of the hardest workers in the pool.
I was always determined in the classroom despite my confusion.
It’s the surrendering and accepting that was harder for me.
With time, we get there…but we need our little fits along the way as we recognize and realize that we are different. That we aren’t able to do something that everybody else can do can be frustrating. 
I have to realize that if I don’t ask for help, I will just get stuck. I will probably not do it at all. That is an incentive for me.
Accept 
Surrender and ask for help. 
Problem solved.
Eventually do it by myself.

Side note: Added after I wrote this: An FASDer (RJ from Flying with broken wings) just said this to me about this blog…We have to remember that giving in is not giving up. That is AWESOME! Love it! True! 

All I hear is blah, blah, blah (reposted from my blog on FASDforever)

My blog that was posted on Jeff Noble’s FASDforever. Thought I would repost on my blog. It was originally posted and can still be found on FASDforever website. With FASD, it is hard to hear what others say, a lot of times…hence the title All I hear is blah, blah, blah. Well, I’ll let you read it…




There are experts and there are experts. I don’t have a degree in genetics. I don’t have a PhD in anything. In fact,  I don’t understand a lot of what goes on around me without an interpreter. What makes me an expert? My mom drank when she was pregnant with me. I might not understand the brain, but I am still an expert. I have lived with this FASD brain for over 40 years.

I look like the average adult. I have blonde hair and blue eyes. No one would notice anything different about me just by looking at me.Most of what is wrong with me, people can’t see.
Unseen things are hard to understand. I know that one first hand.

When I was first adopted as a baby, I was diagnosed as failure to thrive. My toddler years were spent in constant struggle and by the time I hit kindergarten, there was something noticeably wrong.  My teacher contacted my adoptive parents and told them I needed tested. FASD was not a diagnosis, back then, but the neurologist had bad news. He informed them I had significant brain damage and I would not even graduate high school.

Struggling was all I knew. If i was going to do what the other kids were doing, I simply had to find a creative way to make it happen. Struggling was more than everyday life.It was every moment life. I couldn’t see words like other kids. My eyes did not converge and i had no depth perception. So, I saw two of everything and the world was flat.  Yes, Christopher Columbus, the world is flat…to some.

I couldn’t cut like other kids. Scissors and buttons have never been my friends. I knew if I was going to make it in this world two things had to happen.  

Number one, I became the most determined kid in the school. I might have gotten C’s, but they were C’s  I earned. I learned how to learn. I adjusted. My life has been a continuous Thomas Edison quote. When he was inventing the lightbulb, he said, “I have not failed. I have found 10,000 ways that won’t work.” Well, we all know what lights the room at night.

I know what it feels like when everyone in the room knows you are struggling.They told me I would not graduate high school. I got a masters degree. They told me I would never hit a ball. I practiced hours until I was hitting home runs.

I know there is a lot I am not able to do. Sometimes, that’s hard for me to accept. Sometimes, I blow up in frustration, but I blow up because I care. I blow up because I want to do things on my own as much as my loved ones want me to. I want to understand the world around me as much as everyone else does. I really don’t want to have to look to others to interpret. I want so badly to understand what everybody else understands, BUT, I have to accept that I have to incorporate helps in order for me to be my best.

The second thing is that I can LIVE with FASD. I might not be able to ever figure out my bank account, but I have an external brain that knows how. I might not be able to hear everything that is said, but if one of my interpreters is not there, I can always turn on my tape recorder and play it back later to get all that was said. I might have to rewind a few times to catch all the words because of auditory processing disorder, but I learned a way to beat my own brain.

I found my passions. Sure, there are so many things that people with FASD cannot do, but there is plenty they CAN do. I found I am not the best verbal communicator, but I can write. I love photography. I became a professional writer and photographer. I was a journalist/columnist for almost a decade, wrote a nonfiction book, just finished my first novel and have online photo galleries.

Hopes and dreams don’t have to be gone when a person is diagnosed with FASD, they just have to be different.

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!