You have entered the Spectrum Zone

Archive for May, 2012

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.

Advertisements

This is your brain when its been exposed to alcohol in utero

I wanted to help at my friend’s fundraising event yesterday. I’m never put with the money or any chaotic area when I help. My brain simply does not process fast enough. I feel like more of a hindrance. Yesterday, ended up different than the norm, when I volunteer. My external brain, who by the way makes sure I am always okay in all situations, had to go around and sell 50/50 tickets. After several attempts of her explaining to me the amounts per ticket, I still was panicked. I watched and watched her and my daughter sell tickets. The more they sold, the more I watched, the more confused I got, the more i felt like crying on the inside.
It’s times like those that I really realize how messed up my brain is. i wanted to help in the worst way. I normally set up or tear down tables, etc. I take pictures of the event because it is the best way for someone like me to be involved but still not have to engage fully in any one area. I love to help, but in ways that I’m still working alone, in the crowd. 
One dollar for one ticket. I got that. But six for five or five for six and what if someone gives me a 20 and they only want 5 tickets or 10…I had no idea what to do. I tried and tried to figure it out and the tears were welling up in my eyes because I really realized, I want to help so bad…but…I just can’t.
Kerri, my EB, said to me she was going to go around and sell tickets. She wrote it down what I was supposed to do. She made sure I was okay. I wanted to do this. I wanted to prove I could do this to her and to me. and to my 16-year-old daughter that was selling tickets without even thinking. 
A person came up to the table. Okay, I can do this. She hands me a 20 and wanted 2 sets of tickets. I told her to just take the ones she wanted cuz I couldnt remember how many that was. She looked at me and I said,” do you know how much money I give you back?” So, I gave her the money only for her to come back and say, I need one more dollar.
People came up and asked me about the pricing. I read it right off the paper Kerri gave me. 
I felt an inch big.
If I looked like I had a brain that didnt process like others, than they might not expect me to be like them. But, I look like I should have a brain that works so…
PLUS, I want to help! I want to be able to sit down and take money and give change and be able to interact without my processing going so haywire that I cant think at all. It just shuts down completely.
Kerri wasn’t going to go sell tickets. I told her I dont want to be the reason you cant sell tickets. I wanted her to make the most money she could. So, I sold a few on my own and I started to be okay. I had to be okay with reading from the paper and getting help from those I was selling to. The point is, I did it.
I was proud of myself. I didnt run out and say I can’t. I did everything I could to contribute, even though I knew my brain doesnt function in that area. I love to give back. She said that is why she hesitates to ask me sometimes to help.
Don’t do that please.
Always ask!
We always want to help. We want to feel included and needed. I’m not normally with the money and people. So, I’m fine.  I find my area that I can help and feel comfortable.
I’m a great runner at events. I’m the gopher. I’m the one that will do runs to outside locations to bring stuff in, set up tables. Anything where I can keep moving and not stop to talk to people…lol. It’s true. 
I’m laughing because the day before, on Saturday, I was thrown into another situation where I was out of my comfort zone!! Way out!! Went to Columbus to accept my writing awards. 
They met for lunch. I did not. I don’t do informal meet and greets with people I do not know. Sitting across from people in a dining experience is not pleasant for me, especially when I am meeting them for the first time.
So, I did what I needed. I went to the meeting room when everyone was at lunch. I got the chair closest to the door, before anyone else got there. I got comfortable with my environment.
They instantly put us in a circle…lol. They wanted it to be informal and personal. We were writers. We needed to get to know each other…lol. 
My EB instantly put her hand on the back of my chair and said stay where you are and they made the circle go around me. So, I didnt have to move. Why is it that the teacher (speaker) always seeks out the person who does not want to talk and they keep calling on them?…lol. I dont know if it was written on my face or what, but she kept asking me questions. At one point she said Ann, what is the premise of the book that you just wrote. I just went ummm…well I really don’t talk very well. She said, “I know.” 
Really? You know…lol…then why are you asking me to?…lol. Well, anyway, I said my friend here can answer for me. And she did. My brain instantly went dead as soon as i was asked to speak. It was not a rebellion at all. It went to 0. 
She asked me several other questions along the way and I was able to answer at times, in short sentences. Short, very, to the point, sentences work for me.
Just because I am a journalist, does not mean I am a talker. Yes, I can interview people all day. It is a passion of mine to get to know people. I love to know their hearts and I want to tell their story. The second someone asks me a question…BLANK. I will deflect, I will change the subject, I will find a way to leave a room, I will change it back to them in seconds…
I had asked, very clearly, not to speak during the awards. I was told to speak on the article that won and I asked if I could please not have to do that. I made it very clear, as a matter of fact…lol. First thing I was asked when I went up to accept the award…Can you tell everyone about the article…
We really do know our limitations. 
We really do know our abilities.
We do not say we cant just so we can get out of something.
Now, I can’t speak for everyone with FASD.
I know there is rebellion, but so much of it stems from the fact that we really do get angry that WE HAVE TO ASK FOR HELP. I get scared. Confused. I know I’m going to screw up. I need a guide and sometimes…that pisses me off! (Sorry for the language…but it does.)
AND… the older we get…the angrier we can get about that. 
Needy? Really? as someone called me.
People who are needy want people to do things for them. They dont want to try. they dont want to work like crazy to be independent. They dont struggle and struggle day after day to get through the day and prove that they can.
I spend more time and effort on getting through my day and I can honestly say, even though I need guides,…I am not NEEDY! We simply need help.
Teens and young adults especially can get angry about this. They want to be like their peers. Who doesnt want to be equal with others their age?
The more I realize I can’t…the more determined I get. The more I want to NOT ask for help. I CAN DO IT. 
I got angry yesterday when I saw how much my brain would not work, even tho I wanted so much to help.
My EB does it in ways where I dont even know she is helping. She comes along side and just does with…she normally gives me things that I can just do…She normally notices when Im struggling and she just enters in and I dont even realize she is helping me accomplish what I need to do.
The last thing we need is for people to force us to be in situations where we are destined to fail. No way to succeed because our brains DO NOT work that way.
And I’m not talking about yesterday…cuz she didnt force that. I did. I wanted to help in an area where my brain was not able. Sometimes, we just have to surrender to some facts that are not pleasant.
Sometimes…we just have to realize…this is our brain…
An alcohol affected brain…

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!!!!


Is the one with FASD caught up with the rest of the room?..my story part 2

Synapses. Hemispheres. I’m not even sure what all that means. I know it has to do with the brain. I know that my left hemisphere and my right hemisphere don’t work together like they are supposed to. There is a disconnect.

There’s a lot of misfiring going on in there. I don’t need to tell you how much  of an FASD brain is affected. I know it’s a spectrum, but we do have many similarities.

One of the biggest things we don’t like is change. We do not adapt well and we need lots of time to process when a change is coming.

When I was 11, my dad, my world, my everything died and…as I referred to in (a previous post)…I had no idea who I was anymore.

It was November 25. It was like any other day. My dad leaned over my bed and kissed me goodbye before he went to work. I got up and went to school. I came home, ate, and went to swim practice.

I did it every day for years.

It was my routine.

That particular day, my neighbor came to pick me up from practice.

“Where’s my mom?”

“She’s at the hospital with your dad,” my neighbor said. “They are just running tests. Nothing major.”

She drove right past my house and went to hers.

I can still remember what was on the television. Happy Days.

Laverne and Shirley was starting and the phone rang.

My neighbor’s daughter hung the phone up and told me she could take me home now.

When we pulled in there was a lot of people. My neighbor did not even say anything at all to prepare me. All she said was ‘Bye.’

I went in. Looked around. I saw all of my neighbors. I saw my two aunts (my dad’s sisters.)

Now, I have FASD. I have a hard time processing to begin with, but this was a situation that I had no idea what to make of it and noone (even without FASD) wouldn’t have been able to.

They say that FASD people are at least half their age. So, at 11, I would say I was around 5-6 emotionally. Not sure. Sometimes I feel that now.

I looked on the couch and I saw my adoptive mom sitting there crying. I don’t know why, but the first thing I remember saying was, “Is it dad?”

She burst in tears and shook her head.

“Is he sick?”

Same response.

“Could he die?”

Same response.

“Did he?”

Same response.

I don’t remember anything, but a room full of people looking at me and they said I threw a book.

Death? I really did not even understand death. I just knew that meant I would never see my dad again.

I spent the rest of that night in my room by myself.

The next morning I actually got up. It was the day before Thanksgiving break.

I got ready for school and came down and said, “I’m ready to go to school.”

My adoptive mom and aunts laughed. “You aren’t going to school. Your dad just died.”

I went back to my room.

I ventured down and spent the rest of the next three days playing the same song over and over.

The Entertainer.

Have no idea why, other than the fact that it calmed me. Repetition. I must have played that song a thousand times. I can’t believe someone didn’t tell me to stop.

All through the next few days, with people coming over and funeral planning, etc. Not one person took the time to sit down with me to make sure I understood what was going on.

People with FASD can often feel invisible. We can be in a crowded room and feel like we are the only ones not included.

All it would have taken was someone to sit next to me, someone in the family and just sit with me. Not let me sit alone.

All it would have taken was someone to ask, “How are you?”

FASD brains are confused brains. There is so much that goes on around us and it is so hard for us to process all of it. If life could operate at our speed, it would be so much easier.

We understand better when people slow down their speech.
We understand better when people make sure we understand what they are saying before they move on to the next point.
We understand better when things are broken down into smaller increments. One sentence at a time, sometimes.

We want to understand.

It’s like being in a tornado and asking what did you see and hear when you were in there.

Good luck.

I remember sitting in the room with all the plans of my father’s funeral, etc. going on and seriously hearing a bunch of chaos, not making sense to any of it and not one person taking any time at all to prepare me before I went into the funeral home for the first time.

Noone told me I would see my dad in that state and what to expect.

He died instantly.

Massive heart attack.

He was only 55.

He was my life.

I said in a previous post that I started drinking when I was 11.
Well, that is not altogether true.

Yea, drinking alone, it’s true.

My dad would always come home and from the age of three I remember sitting next to him with my little shot glass and his beer. It was our time. No…lol…I don’t condone him giving me beer in a shot glass at age three. Not at all. I just know that it was some of the best times of my childhood. Sitting quietly next to my dad, on the couch every night drinking our beer, was our thing.

I know he didn’t think that he was hurting me and I know he didnt realize then as much as he did later just how much of my brain was already damaged from alcohol in utero.

He loved me. He was the best dad. He was the only one who got me. Who met me where I was and just would sit quiet with me. During those times, it was as if the world slowed down to my speed.

We need help having the world explained to us.

Just last night…lol…my external brain (my choice of wording) and my 16-year-old daughter were watching NCIS. They were really into it. They were making all kinds of comments, etc. I was so lost. I had no idea. I try not to stop the show too frequently, but in order for me to understand the show completely, I have to stop and ask what just happened, what does that mean.

If we could slow life down to slow mo…we would be fine. We just don’t process that fast.
We need constant interpreters.

The important thing is, if you can be an interpreter for someone with FASD, be one.

Don’t let too much go on before life is explained.
Make sure the one with FASD is caught up to the rest of the room.

I thank God every day for my life interpreter’s.

We are as good as our last five minutes…my story

When I was a kid, I was different. I didn’t look different. I was just different. I always had that feeling of being on the outside looking in. I had periods of when I fit. Not many. I didn’t even feel like I fit in my own adoptive family. I felt awkward.

I was quiet.

There were periods of my life that I fit or I guess you could say, I thrived.

When I was in a pool or a pool environment, I was in my element. I could do anything. I could talk shop I guess you could say. When I hit that water, there was no feeling like it. Plus, there were very few times I lost. I belonged to a swim team. I belonged to a relay team that was probably one of the best in Ohio.

People respected me in the pool. I would get out of the water and I was someone.

I was good in music. When I got older, I found myself in the band and I did quite well. I was first chair clarinet. Tuned the band every day. It was another place where I belonged. I wasn’t popular, but at least, I belonged in a group.

I was still quiet. I was still never the life of the party. I still stood back and watched everybody else enjoy. I was always afraid. I was always timid.

I decided to give my love for acting a try. I went on stage. I did plays in high school and on the side. I was actually good. I really enjoyed it. I loved being someone else different than me. I had people clap for me. I felt a part of. Putting a play together and being a part of the camaraderie with a group of peers was really something for someone like me.

You know, its not that we don’t want to be a part of. Its not that we dont want to be a part of society and do what everybody else is doing. We want to socialize. We want to jump in and do what everybody else is doing in the room.

We simply don’t know how.

Those are some of the things that saved me growing up. I look back at those times as some of the best times.

We all want to belong.

People with FASD have a hard time finding places they fit.

That feeling of being on the outside looking in is not fun.

There was a time in my life that everything seemed to fit. I was on top of the world.

I had the best dad in the world. He loved me more than anyone. He was my adopted dad, but he was God to me. He was everything. I was one of the best swimmers in the area and I traveled to other states to compete. I looked forward to that buzzer going off and me being able to exert my energy in a positive way and win…or come close. (Of course, I’m FASD…I have to win every time…lol. Perfection is the goal.)

Well, when I was 11, my world ended.
You know us. We don’t like change. We are not good with it. Routine is our friend.

My dad died.

My world as I knew it ended.

Everything ended.

Nothing mattered anymore.

That window of looking in at the world became more distant.

The only thing that saved me was alcohol.

Funny.

That was how I started the world and I found solace in a bottle.

Sad.

I was only 11 and started drinking. My adopted mom worked and I had the whole house to myself most of every day. My sister who was my…well long story…which I still don’t understand…all I know was I loved her about second on the list and my adoptive mom gave her up to foster system. “She was bad.” That’s what I was told.

It is such a long story. I don’t need to tell it right now. Like I said, my world was over. My dad was gone. My sister was gone. Swimming didn’t matter to me anymore. My adopted mom spent her days at work. I found myself in trouble.

What we want more than anything…and I can only speak for myself, (but I’m going to use we) we want to feel accepted. We want to be a part of. We want to feel like we are important. We beam over the simple things. Just ask us to help. We want to. Just ask put your arm around us and say “Good job.” We thrive on that stuff. We want to contribute to society in the most positive of ways.

I was the most confused kid. Nothing made sense. Not a lot makes sense to someone with FASD to begin with, but when my entire world was taken away from me…well…I had no idea what to do next.

I went from one of the best swimmers in the country to not even having the want to go to practice. My dad was not at the end of the block anymore with a towel to wrap around me. I no longer saw the proud look on his face when I won.

I didn’t have as much of a will to work in school. The following year, in 7th grade, teachers had no idea what to do with me. The school even wanted outside counselors and anyone to help me. I became quieter. My world became smaller. I looked around and I didn’t fit anywhere.

After my dad’s funeral, which I believed I was responsible for the fact that he was buried alive. I swore that he was still breathing. I sat in the funeral home and watched his chest go up and down. I tapped on a couple people to tell them, but they would not listen to me. When they buried him, I believed with all my heart that I let him be buried alive because I could not find the voice to tell anyone. I tried, but the more I tried the more I got shooed away in nonsense.

But back to after the funeral…I was in the living room. I can remember it like it was yesterday, I had no idea what to do next. I really was a confused kid. My aunt, my dad’s sister came up to me and said, “Ann, you need to be there for your mom and be strong. After all, he was not your real dad anyway.”

My world was crushed. She didn’t mean to hurt me. I really believe that. She was one of those people who just said things without thinking. I loved her dearly until she died, but those words are still with me today.

I shut down. I didn’t feel a thing anymore. Nothing could penetrate me. I stopped swimming. My grades were just about F’s. I drank on the side and I was only 12.

All I wanted was to fit in. All I wanted was for someone to come along side me, put their arm around me, and help me through life. My adoptive mom was too busy for that. Plus, she and I never really talked about anything after my dad died. We grew more and more apart. When she got rid of my sister, it was a wedge between the two of us until the day she died in 2008.

FASD kids have to face a lot of hardships. We have to face the fact that number one, our biological moms drank and that is why we are different. Number two through a hundred, we have to face the fact that we were abused, rejected, or given up into the system (many of us) and those are hard truths for those who do not have FASD, but put FASD on top of that and…wow…its hard.

I went to an older cousin of mine, at the funeral home, and asked her to sit with me. “I’m busy, I have to go,” she said.

I tried to get teachers to notice me. Some positive ways. Some negative.

I just wanted to belong. If there would have been adults who came along and said here we have this job for you come here and help us and they include me…I would have maybe found my way back.

I ran away from home. I continued to drink. I found myself in a world of a mess because I never felt that I fit. I never felt that I was understood.

I do have to say…in spite of it all. I never gave up. I know that does not sound right. Like I have said in previous posts, I am one of the most determined people in the world and even though I continued to drink…I wanted to make it.

I found it within me to get better grades. I dug down, inside my soul and found my way back to life.

There is one thing that I believe is univeral with people with FASD…we want to make it. Regardless of what goes on around us…regardless of how bad life is…regardless of how many hurts, pains, and rejections. We want to make it.

If anyone reading this can come along side a kid with FASD and try to help them feel included, then this was worth it. Give them a voice. Let them be heard. Give them a job to help you. Put your arm around them and say…”Good job.”

Call them family. That’s what we want. We just want to be included in family. We want that love and affection that so many have been born into naturally. Don’t ever exclude someone with FASD…it hurts…more than you know.

That window that we look through only grows dimmer and gets more and more distant the more people make us feel different.

Many of us were born failure to thrive. I was. The last thing we need is a reason to go back to that. We want action. We are constant thinkers. Our brains never turn off. It  can all go in the negative direction if we are not embraced by the positive.

Find the small things and smile at someone FASD. Make them feel like what they did was the most special thing in the world. We want to hear, “I’m proud of you.” We want to hear “Nice job.”

The more positive…the more we go toward the positive.  The more negative, the more we shut down. I heard a statement once that I believe is a million percent true. We are as good as our last five minutes…Wow.

Wow.

Let’s help people with FASD have a great next five minutes!

Sensory helps

These were actually for autism. But I know those of with FAS have the same sensory issues. As soon as I found this, I had to post because not even knowing it, I always suck on hard candy. When on overload I want a milkshake to suck through a straw. Just calms me. i also do the lollipop thing. I always go for the gum, licorice and dried fruit. I swam too to calm. Bathwater or waterfalls are so calming to me. Going under water is very calming. Cold water is alerting. My entire being alerts! Warm water is heavenly…to me. Everyone’s different. A hoodie blocks my sensesl.  Having something on my head helps a lot! A hand on my head helps. A shoulder to put my head on. yes, even still. Its calming. Can’t help it. Just getting out of a chaotic room is calming. I can reenter, but I need some time to regroup.

I have other things that I do too. I need my balance. I need quiet. I need. I love when people are quiet with me. I love nature. I love breathing it in and experiencing it. I obviously love writing and love photography. I also, if I can get myself focused…lol, enjoy reading.

Every FAS person has to find their way of calming. Here are some…

“The Sensory Connection Program represents a vividly imaginative and theoretically sound occupational therapy intervention program. The author was energized to develop this program when she discovered the impact of sensory-based activities when used with some of her more complicated clients. After a decade of intense study, research, and program development she now presents this program in its entirety.” Patricia Wilbarger, MEd, OTR, FAOTA.
I got this from Autism Today.

How much further along would we be if people knew about FAS

I woke up thinking about yesterday. I’m still pretty steamed. What is it going to take for society to recognize the effects of fetal alcohol syndrome? Babies die from it so that won’t get anyone’s attention. Why is it okay for a mother to drink while pregnant still? Even after all that is known.

Do we need a law in effect that actually states that it is against the law for a woman to drink while pregnant? Should we legislate for that? Should we line up a bunch of people with FAS and say this is what happens when you drink while pregnant? Well, that won’t work because most of us have invisible disabilities.

Do we have to draw images with umbilical cords with a handle that has the word KEG on the top of it with the mom’s hand on it leading toward the baby?

What gets me more is the lack of knowledge in this society that it even exists. They say the numbers are up around 50 in 1000 kids have it and it is even higher than that because most mothers do not admit that they drank while pregnant. Stats today say that there are more people with FAS being diagnosed than people with autism.

How come I can go to a man in a Barnes and Noble who is supposed to be very knowledgable about books and topics and he look at me like he had never heard the words Fetal Alcohol Syndrome? This was a man at least in his 50’s. Are we really there?

See, to people who have it and to their EBs (external brains) or caregivers, this is something they live each and every day. We eat, sleep, and breathe FAS.

I am not asking for that. All I am asking for is for more awareness. A month just for FAS. Commercials. Billboards. Speakers. Inservices in schools on FAS. The Rainman and Temple Grandin of Autism. FAS needs that. We need advocates. We need legilators paying attention and passing laws on this. We need chapters all over the country. We need centers for FAS adults and children all over this country. We need all the helps we can get.

IEP’s are not built for kids with FAS so they get lost in the system or misdiagnosed to fit somewhere else. So, they are treated as if they are autistic but they are FAS. Yes, there are a lot of similarities, but it is like apples and oranges. Completely different diagnosis. Completely different brain.

When I was first told I had significant brain damage and that I would never graduate high school, it was 40 years ago. I was told that I had such significant retention and comprehension problems I would simply not make it. I was told that that the parts of the brain that controls the eyes were so damaged that I would never be able to drive. My eyes do not converge. My eyes have 0 depth perception. My sensory is off the charts. My ability to process like others is significantly stunted.

Oh, I’m smart, they said. Very high IQ in fact. but I would have no clue how to apply anything I knew.

Huh.

What do we do with that?

That was 40 years ago. How much further are we than that.
We did link it to alcohol.
A genetics person give me a 100% FAS diagnosis with the words that “alcohol significantly contributed to my disabilities.”

So where does that leave us today?

FAS people do not have the ability a lot of times to advocate for themselves, but that is what we have to do. We have to educate everyone around us including our own doctors because they simply are in the beginning stages of even knowing what FAS is.

I know FAS individuals who tell me that they have to take fliers to their doctors to explain to them what it is.

There is noone more determined to LIVE and to make it in this world than someone with FAS. They literally are the most determined people I know. They will make it no matter what. AND we will make it without the helps, but just how much further along would we be if we did?

Just how much further along would someone with FAS be if they had educators, doctors, huge centers of research and commercials, advertising, awareness months, ribbons, and moneys pouring into this cause. What if everyone knew about it and I would never have another person look at me again as if they had no clue what FAS was.

What if people knew about FAS as much as they know about autism?

What if we actually had a diagnosis in the DSM V?

What if?

Oh, we are going to make it on our own.
BUT, we will be so much further along if we have all that in place.
if we had the helps
if we had the ieps with the proper diagnosis on it so Fas kids got the right educational helps.

If they did, they might be able to be who they want to be when they grow up.
They might be able to get there faster.
They might be able to exert that energy they have to put in every day just for daily living and excel in a job and in life.

If people did it with us, not just our external brains or caregivers, but I mean society like they do autism and other DD’s…just imagine how far we could go.

Just imagine how much less of us there might be!

That would be a good problem.

Maybe a mom just might think twice before having a glass of wine while pregnant.

If we can save one baby from becoming FAS…it would be worth it.

Video blog by Ann on why we need to call FAS what it is. http://hopefasd.blogspot.com/p/video-call-it-what-itfas.html