You have entered the Spectrum Zone

Archive for the ‘frustration’ Category

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

Advertisements

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.

The SPIRIT of FASD

This was written by a fellow FASDer: R.J. Formanek, an absolutely creative writer. I asked him if I could post this in my blog. I am so excited that he said yes. He has a site on Facebook called, Flying with Broken Wings…a site for those with FASD and their caregivers/external brains, etc.

This is what he wrote…

I just wanted to say that a whole lot of people focus on the negative side of FASD, and while that is the over all concern, please don’t forget that FASD is so much more than just the bad stuff.


We are your dreamers, your musicians and poets, we write the stories that touch your very soul, we are the ones that come up with the miracle cure when nobody else can, because we are the original “out of the box” thinkers!
Look at our photos…there truly IS so much more than meets the eye!


Who else do you know that can get total joy from the first rays of sun, or a warm gentle rain, the sound of a lone loon at dusk or just the fun of playing in a puddle after that warm gentle rain? We are comedians and magicians, tricksters of the first degree, beware of the twinkle in our eyes…it means we are playing! We love to make those around us happy! We love to share.


So, that’s my little thought for the day…the sun is out, the sky is blue and dammit! I’m gonna go find me a puddle and a chunk of wood, and play boats!
…you all have a great day now!