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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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Feeling lost

Last week was a dream come true to someone with FASD. I worked at a camp for kids with cancer. I was the photographer. I had a schedule mapped out for me. I had where I was supposed to be when. What exactly was expected of me. Routine. A focus cuz I knew exactly what I was supposed to do. I had purpose and I had everything laid out for me so I didnt even have to figure out what to do next. I knew.

This week I have none of that. I don’t have a schedule in front of me telling me what to do. I don’t even know where to start. I’m in between jobs I guess you could say and I can’t even figure out how to get where I’m going. Execution is not my strong suit. I know what I want in my mind but how to get there I have noooo idea.

That is the biggest problem with me. I will work 80 hours a week if I know what to do and if someone tells me exactly what to do and how to do it. I’m fine. I will do it all day and with all the focus in the world. But to be left on my own after a week of complete schedule and routine and focus–i have never been more lost. Well, I guess I have, but I am noticing it a lot more right now cuz of last week.

If we just had someone to put a schedule in front of us and say do this, we will be fine. I seriously would work the entire day if I just knew what to do and how to do it. I just can’t get my brain to figure out where to start and how to get from A to B.

And it makes us get afraid when that happens. So the fear makes us feel more lost and more confused so then we become majorly stuck.

I loved doing the photography all week. I wish that I could find a regular job where I could do photography shoots all the time and have a regular routine. I would work very hard at it. I have a gallery and it is doing amazing with the traffic and the feedback, but I’m not getting buyers.

It is so hard for people with FASD to make a living because we really do have disabilities and our brains are really wired differently, but we want so badly to be busy and be productive at the same time. When we don’t have that is when we start getting into trouble and start making the people around us annoyed with us.

If I just had a purpose and a focus and something to keep my busy I would be fine. I always have to be doing something. When I’m not I start getting weird.

I am trying to figure this out. When I’m like this it is even harder for me to explain myself in speech. My brain is more confused. So, the more I try to explain, the less sense I make so then I feel more alone than I did before trying to figure this out.

The worst place to be for someone with FASD is lost.

Structure. Routine. Someone to help us get from A to B. That is the key.

How do I start? What do I do? How do I get from what’s in my brain to action?

I seriously have no idea.

Being an FASD mom with an NT daughter

“Here mom, let me help.” Those were the words I heard from my 16-year-old today. I’m thankful for those who know when to help. Who know how to help and who know exactly how to allow me to be this FASD person but still feel okay at the same time!!!!! To be in a store, surrounded by items, with a list shuts down my brain. The harder I try, the more confused I get. Looking at items trying to match them up to the list for 15 minutes didnt help. “Here mom, let me help.” Calm. Patient. Loving. And most importantly, she did it in a way that I did not feel insignificant. She just stepped in and helped and didnt for a second make me feel that there was something wrong with me.

It’s hard being FASD. It’s hard not understanding what people say. Its hard being FASD, but being expected to act as if we are an NT. It’s so difficult to live in a neurotypical world. Where even if people know your disability, they want you to act like them. Anger and frustration only makes our disabilities 10x worse.
If my daughter was not there today, I absolutely would have left that store with zero items on the list. I forgot one thing after another and she just said, “It’s okay mom, its right here.”  She didnt get angry. She didnt get frustrated. She could have…lol. She’s 16. We had been there a long time!!! We had to go back because I forgot something. “It’s okay, mom.”
I am so sensitive. If someone is upset at me, I literally go to tears and shut down ever more. I try so hard to understand and do what is expected of me, but so many times, the harder I try, the more I get it wrong. 
I had complete brain shutdown today. The harder I tried, the more my brain would not process. I’m thankful that she kept calm and just did it with me and the job got done! 
I’m thankful, but yet a little down about it at the same time.. I care! I want to be my best for myself and for the people I’m with. When I walk into a store, I want to be able to walk right up grab the things on the list and not have to rely on others to help me. It is what it is. That is my motto about those things. It is soemthing I cannot change. So, I have to go with it. 
I can do one item at a time. When I’m with another person, I can do one item at a time. Lots of times I have to have instruction. Lots of times I have to be told more than once. Lots of times, I only hear blah blah blah when they tell me and I really dont have a clue what they said. If they dont look at me when they talk, I dont here it at all. 
I was thankful for my daughter today who stepped up and said, “Ill help you mom.” Nice job daughter of mine! 

FASD and yes I turned my passions into top awards! YES WE CAN!

Yes it’s true. One of us…someone with FASD…born with Fetal Alcohol syndrome…told that she would not amount to much in life…is heading to the state capital tomorrow to receive several state journalism awards including the top honor…the Helen Waterhouse Award. Yes…It’s me.

Someone with FASD did it! If you have FASD you can do it!!! Don’t let anyone tell you, you can’t!

My brain didn’t work. My brain didn’t connect. My brain misfires all the time…

BUT…

Because I was never able to communicate well in speech, writing was essential. It’s funny because I could not do that very well at all, at first. I had a hard time figuring out what the letters were and I had a very hard time writing them. I only saw half a page so I only wrote on half. My teacher used to draw red lines to the end of the page in order for me to see all of it. Well, I learned through the years to fill up a page…lol…and then some. My editor would always ask me to tighten it up…lol.

People with FASD can! We will! We do!! Find a passion and turn into a dream.

I would sit in my room and write. I would write and write and write. I would write poetry and anything I could to express myself. If I had something to say to someone that was important, I would write it and give them the note. It probably seemed weird to give a note instead of voicing what I had to say. I  just wanted to make sure what I wanted to say was actually said…if that makes sense. The disconnect in my brain with FASD causes circuits to not always work and I can get out every fifth word at times and I dont convey well in speech.

My brain connects with writing. It can think in eloquence when my fingers are moving. This is my brain writing…

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…

This is my brain talking…
Sit. its nice out. thats a cool tree. oh look at that plane.
I smell a flower and say nothing. I sit down to an ant hill and my eyes dance in fun but say nothing.

BUT if you my mind would say all of what I wrote above in the poem…my mouth just doesnt connect with my brain to say it.

Oh, how I wish it did. The things I could convey.

I was asked to do a speech tomorrow for this grand event. I would love to.

I could be disappointed in myself for not giving the speech or be proud of myself for writing the awards. Proud that I won the most awards in Ohio. Proud to win the Helen Waterhouse Award. Just proud to be a journalist!!

I could focus on the fact that I let the heads of OPW down because I wrote a speech and asked them to read it for me or the fact that I am proud of myself for finding an alternative way of conveying what I have to say.

I have been asked by many to speak all over the country because of this blog. I was thinking about that. Do I want to? Absolutely! I want to go to anywhere I am asked and speak about FASD. I want the world to know about this cause.

I was telling my (external brain friend) yesterday, you know…there is a difference between going into a room where everybody knows your FASD and speaking. BUT speaking in a  room where they all expect you to speak like a NT (neurotypical) because they have no idea you are FASD, is very scary. In so many ways FASD individuals are really forced to conform to what society needs us to be and we want to do it. We would rather have a brain that was not like this. I would love to just stand up and have my brain work and say all I need to say and trust my mouth will work.

I am proud. I mean I won top journalism honors and I have FASD. I mean WOW! Thats the most amazing thing!!

 I took something I was weak at…communication and I knocked it out of the park!

YES!

See!! WE ABSOLUTELY CAN DO THIS! WE CAN DO LIFE! WE CAN LIVE! WE CAN BE!!!!