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Archive for September, 2012

Determination

That is all I know. I wake up determined. I go to sleep determined. I go into each task as if it is monumental. It could be as simple as a meet and greet at a local coffee shop, or a group of friends getting together. it can be my day at work or just a simple fact of staying on task.

It can be exhausting. Every day can be like I’m running a marathon.

Lately, I understand less and I am confused more. There is too much going on in my world, for sure. I literally do not understand most of what is said around me. I find myself constantly asking what and trying to just fill in the blanks.

Determined.

I’m not going to give up. It is what it is.

Sometimes I wonder what kind of brain I would have it if were not exposed to alcohol. I look into the mirror and wonder if I would be able to see the world differently if I had a fully operated brain. Maybe I don’t want to see the world differently.

Would I be able to look people in the eyes?
Would I be able to not be anxious ALL the time?
Would my skin not constantly feel like I want to rip it off from too much stimulation?

I live in constant overload. Constantly fighting shut down or melt down.

My world is a big tornado and I’m trying to make sense of all of it. I’m stuck in the middle and everything just spins and spins and I wait for things to land and say oh ok I know what that is. At least, I understand that piece of the puzzle.

What?

I have no idea.

I really don’t understand you.

I try to pretend that I do.

I really do listen to you, but I have no idea what you are saying to me.

I laugh because you laugh.
I shake my head cuz it looks like I should.

I stand up because everyone in the room does.
I shake a hand cuz a hand is reached out to me.

I watch.
I model.

Do I know why I’m doing what I’m doing?
Not all the time.

Confusion is my state and determination is my survival.

I picked up a book. A children’s book.
I could not retain what it said.
Sad.

My daughter watches shows and has to explain everything to me.
I watched the same thing she did.

I have no idea what happened.

I could call this confused, but I’m not going to because what I see is someone who will not give up…in spite of that confusion.

I have a will no like nobody else I know.
I refuse to quit!

I signed up for DD services. Not sure if I will get it.
I hope I do. Oh, I dont want any assistance money wise.
I just want to be able to do some of the things that others do.
I would like some helps that are not in place.
I would like to read a book and remember what i read 5 seconds later.
I woudl like to understand more of what people say.
I would like to look at people in conversation and feel a part of instead of trying so desperately just to find a few words here and there so I don’t look rude.

I want to talk.
I have a lot to say.
I want to listen and be completely engaged.

I have a brain that just won’t cooperate.
the more that goes on around me…the more I cannot comprehend.

Determined!

I try to read lately.
I get about 2 sentences and I move on to something else.
I still keep trying to go back and read the same article or book.
Only to get a few more sentences and I’m done.

Determined!

I’m not giving up!

I have good days and bad.
Lately, they seem to be harder. I wouldnt say bad.
Different. Not less…lol…isnt that what Temple Grandin had to say?

I can still see.
I can still hear.
I can still live and be a part of.
It’s just different.

If people meet where I am…
If people meet me at my processing pace

If they allow me to be where I am so i don’t have to fake and act like im where they are…
Maybe I would understand more.

the world just goes way to fast for someone with FASD.

Determined?
yes we are!

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What this day is to me…living with FASD.

Happy International FASD Day everyone! This is a day to remember those who were born with alcohol exposure who did not make it. This is a day to honor those who are living with it each and every day, finding creative ways to make it in a world that does not understand their birth defect. We live to conquer. We will make it, in spite of so many who choose to ignore this exists. Refusing to put proper definitions and proper helps. Not allowing it to be recognized in schools and have it on IEP’s.

 So many choose to put a stigma on a human being. We choose to not be FASD, but to LIVE in spite of it. We are human beings. We just happen to have this thing that effects our brain which effects every aspect of our lives. BUT, we are sooooo much more than FASD!

 We are amazing people with amazing talents and gifts. We have so much to give society!

There are even those who choose to continue to put ALL negative false beliefs about who we are as people, making us sound like we dont have a chance in life.

NOT TRUE!

Yes, we do have to fight a lot of challenges each and every day and yes we do need ‘external brains’ around us to help us understand and to help guide us in right directions.

BUT, this is a day to fully embrace who we are. The good, the bad, and the ugly…lol.

To let others know about this and not be ashamed!

We are to hold each other and hold our heads high and NOT let anyone define us or let us know that we are less than because we have this thing called FASD.

As Temple Grandin said about autism…Different, Not less.

I have a brain that does not understand the world around me and is fights sensory overload all the time.

BUT I know that God gave me ways to compensate for all of my deficits and the creativity to go along with it to be the best individual I can be!

I have learned how to learn!
I have had to be courageous!
I have had to be tough and fight the good fight each and every day.
I have had to pour all my energy into living!
But I live.
I love.
I create.
I want.
I need.

I may not always know what those needs are and I might not always pay attention to them.
I might not always know how to do what I need to do to meet my needs.
It might not even be paying attention to them…lol…probably not.

I have learned to let people in who are good for me.
Who embrace who I am without focusing on the disability.
Who see me for the positive and not the negative definitions that come with FASD.

I choose to let people sit beside me who want to see the world through my eyes
I choose to walk beside people who let me walk my pace…and they walk that pace too.
I choose to stop and smell the fresh air and stop and sit and play with the ants.
I choose to sit in the freshly mowed grass and reflect.
I love watching a bird sour.
I love focusing on an amazing piece of the world and zone out the rest.

the world is too busy. It is too chaotic. it is too gossipy and hurtful.
I choose not to be a part of all that.

I choose to hug an animal and reach out to someone who is hurting.
I choose to be a part of things that are good and that are right.

I choose to look at skyscrapers and capture them in a lens of a camera.
I choose to build a building with legos, put puzzles together and watch cartoons…still.
I choose to sleep with my teddy bear.
I prefer to write instead of talk. My brain doesnt process fast enough to talk.
It doesnt process fast enough for me to hear someone talking.
I hear every third word….about.
I often have to look away to hear what someone says…looking at them and listening is just too much to process.

These are all part of who I am.
They are what makes me, me.

YES!

I have FASD!

BUT…
It is not who I am!
I AM…in spite of FASD.

I am determined.
I am full of hope.
I am full of joy.
I am full of love.
I am full of dreams.
I am full of feelings…I hurt deeply. I feel pain deeply. And I do not know how to release those very well…but with age, have learned better ways of dealing with them.

FASD day is a day to get the word out. it is day to let people know that drinking while pregnant is not cool.
It is a day to let people know that just because you are breast feeding…that alcohol can still go through the breast milk into a developing baby.
It is a day to let ALL women know who are pregnant to put that drink down!!!

Nine months!

That’s all we ask!
Longer if you breast feed.

BUT nine months!

This is the ninth day in the ninth month!

NINE!

This is a day to celebrate who we are in spite of this birth defect!

WE ARE!!!!!!!

WOOHOO!!!!!

NOW…GO–BE PREGNANT–BE ALCOHOL FREE.

Oh, would you put alcohol in your baby’s bottle?
Would you hook a keg up to your baby’s mouth?

Well, that is what a woman is doing if they drink while a baby is inside them.

Okay…now i done.

Tomorrow is FASD Awareness Day (speech)

Because I am not able to figure out how to download videos and import from WordPress. With tomorrow being FASD International Awareness Day, I have linked my blog from Blogger to WordPress so you can watch R.J. Formanek’s speech. It was an amazing speech for those of us who live with FASD. I am so proud of R.J.!! Please watch and share. https://livingwithfasd.wordpress.com/

Video

International FASD Day

R.J. Formanek, a friend of mine on Flying with Broken Wings, an FASD facebook group, speaks about what it is like LIVING with FASD. This is awesome. Everyone should see it! September 9 (9/9) is FASD day! This day was chosen for women to commit to not drinking for the entire nine months that they are pregnant. This year is the twelfth year it has been recognized. Most events take place at 9:09. The ninth minute of the ninth hour of the ninth day of the ninth month. Let’s all try to remember those who have been affected by the birth defect of Fetal Alcohol Syndrome.