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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 and honored! Pictures on the great day.

My day at the OPW awards. Four awards.

Three firsts for journalism in the State of Ohio

One for the Helen Waterhouse Award. 

My wonderful daughter, Stacia, went with me to get my awards. 

 It really was a great day. Minus a few snags, but all in all, I was so honored. Especially to win the Helen Waterhouse Award. She was an amazing journalist who paved the way for many of us. She believed in the right of free speech and that we as, journalists, had the right to get the word out.

As journalists/writers, we bring people to tears in a heartwarming story. We bring them to anger when their needs to be justice. We can bring the whole world’s attention to one point on the globe. What an honor it has been to be a journalist/columnist for a newspaper, and now blogger for hopeFASD.

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.

See the world through my eyes

Pull up a blade of grass, sit down, and get to know me.
Sit quietly with me. I love your company, but I love the silence.
Get up close and look at the fabric of a tree. The wrinkles on its trunk tell a story.
Watch the wind catch the wings of a bird as it soars.
Look at life as if you are looking at it for the first time…every time.
Look at a puddle as an invitation.
Just try to walk past a button on a wall without pushing it to see what it does.

Look at a rubber band as something to snap or send flying through the air.
Watch a spider spin its web and focus on an ant that is carrying more weight than its body.

Watch my eyes dance as I think of something fun or mischievous to get into.
Look at everything as a toy.

Watch me do what is the impossible.
Watch me soar and LIVE when I was told that it wasn’t possible.

Look at the determination in my eyes.
Know that there is hope…not defeat.
Know that there is a passion for life
Know that there is purity and innocence behind my eyes
Know that my desire is to please and to love deeply
Know that I was given a strong will. One that will make it despite the disabilities.

Watch me figure out the world.
Watch me realize my gifts and talents.

We love the simple things.
We see the depth in things that many people miss.
A kiss on a cheek to someone who needs hope.
A hand on a shoulder in support.
A wiping away a tear for someone who is hurting.

We feel deeply.
We hurt because we let you down.
We want nothing else than to do what is asked.

Don’t give up on us.
We aren’t giving up on you.

Frustration can lead to anger that can lead to things we didn’t plan on doing.

No. I did’t want to blow. I didn’t want to hit the wall in frustration.
I didn’t mean to make you mad or upset about what I didn’t do or what I didn’t understand.

I’m trying.
I’m giving my all, but…but…

sometimes its like your talking a different language.
sometimes its like I can tell you see me as different.
sometimes I can feel your frustration when I’m not doing something right.
sometimes, my all doesn’t feel good enough.

Not for you.

It is for me.

It has to be.

I’m happy.

I will let go of things in five seconds or less.
I don’t remember what happened anyway…short term memory problem.

I don’t want to focus on the hurts and my disabilities.

I want to focus on the joys that this life offers.

Take a picture.

Every picture shows the world in a totally different perspective.
In a way that we never would have noticed before.

You might see kids running.

I see their playfulness.
I see the field they are frolicking through.
I see the grains in the field and the colors.
I see the smiles on their faces as they enjoy the blue skies while the butterflies are on the flowers nearby.

I see love everywhere.
I see positive.

My blowups and frustrations are but mere blips in the day.

They are not who I am and they do not define me.

The dance in my eyes defines me.
The skip in my step.
The smile on my face.
The joys that surpass anything I CAN”T do….defines me.

I don’t focus on what I CAN’T DO.
I only see opportunities and possibilities.

I get angry because people say I can’t.

I can…
Do it with me.
Not for me.

Don’t look down on me because I might need a little help.

Be patient. because if you stay long enough you might just get a piece of this joy.
You might just get to know the real me.
you might just get to see a glimpse of what is behind this thing they call FASD.

Ah…that is not Who I am.
That is just a thing I have.

A birth defect.
A mark on the brain.

So, our brains our wired differently than yours.

Look up, does your brain see what mine does?
Do you count the stars and smile when you can find the big dipper and the small one?
Does your brain see the beauty in a cityscape?
Does your brain see the shapes and figures in the architecture?
Do you stop and refresh in the sound of silence?
Do you smell a flower with your eyes closed and feel peace?
Do you get excited when you can share with another person the simple things in life?

Look a plane.
Look a flower.
Look….life.

I do.
I have FASD.
I’m a person.
I’m not a disability.
I have a future.
I have talents.
I have gifts.
I have hope
I have laughter
I have orneriness.
I have…
I love…
I care for…
I want…
I need….
I am…

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