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FASD and education….from someone with FASD

Lately, I have been hearing from FASDers and their caregivers that there is quite a bit on FASD prevention, but there needs to be more services and education for those who are currently LIVING with it.

Is FASD still considered NEW?  People have been born with alcohol exposure since there has been alcohol. Why is there NOT more services in place? A site that I belong to for those living with FASD and their caregivers/external brains) has special ed teachers as well. I am blown away that there is not more being done in the schools on FASD.
I have learned in FASD circles that the proper codes, etc. are still not in place for FASD children on IEP’s. Those living with FASD state that they are helping their doctors understand FASD. Those living with it are having to advocate for themselves, pass out literature, and educate. 
Yes, I agree with the comments that those who have it are the best experts. We have to deal with our brains every day. I guess, and this is strictly what I’m hearing on other sites, that they are trying to get the right definition, symptoms, etc. for FASD in the new DSM V, that is going to be coming out. Those ‘experts’ are having difficulty trying to figure out what to do and how to understand FASD.
Well, for one thing, spend one day with one of us and you will understand that this is VERY complicated. It would be nice if the EXPERTS (doctors, etc.) would make a panel of FASDers and their caregivers and   spend a day just asking US questions. Diving into the minds of those who live, eat, and breathe it every single day.
Why are there no IEP’s in place for FASD? I heard, and again I am not an expert on this and if anyone can give me more insight, that would be great, but I understand that the education is just not out there for current teachers, school districts, etc. to truly understand how to deal with FASD children in the classroom. Some schools, yes. Some schools, no. 
Why is FASD not recognized by the average person? I do know, from a personal level, that when you say FASD, people do not understand anything about it. They do not know how much it resembles autism in sensory issues, etc. In fact, many of us could have a dual diagnosis with FASD and autism. I know I could. I fit under both in a lot of ways.
I do know that I do not see commercials on television on FASD. I do know I have seen prevention ads at times about not drinking while pregnant, but there is nothing out there about those who are currently LIVING with it. We don’t have an FASD month. I don’t even know of FASD ribbons, like so many other causes have. 
When I wrote a blog, initially for Jeff Noble, an expert on FASD,  I was told from many, that the adult voice was missing. That is the reason I started the blog LIVING with FASD. I realized that not only the adult voice was missing, but also the HOPE in FASD. 
I have had people call me from other states, since this blog has started, thanking me for this perspective. Letting me know that this perspective is just not out there. I have had many let me know that they are learning more about their own loved ones with FASD through this.
I have heard the main connection people have had with FASD, until recently, was the book, The Broken Cord, that was written decades ago.
I do realize that all those with FASD are NOT the same and I do not ever want to be the expert for all LIVING with FASD. All I can do is give my own thoughts, feelings, and opinions on LIVING with this. 
It is sad, that the perspective has not been out there.  I belong to a fb group for FASD. I have learned more there than I could from any expert. I am so thankful for the adult FASD individuals I have met. I know we are different, but I have found TWINS…lol. I fit. It makes me so happy to find like- people.
Living in a world with NT’s (neurotypicals) is hard when your brain absolutely, positively, does not operate like anyone else in the room. It is hard to explain what is going on when it is going on. It is hard to express feelings and emotions. I don’t do well on WHY questions because to tell you the truth…I really don’t know why and most of the time, I don’t understand enough to even answer a question…lol.
There is soooo much to living with this, what I call, sensory-unfriendly, brain-confusing disorder that we live in.
One thing that I would love to convey to those who do not understand FASD. We truly want to do what is right. We often times just dont know how. We are not as defiant as some might think. I know it appears that way, at times. But honestly, we just do not understand. I know I think I am doing what I was asked, only to find out I did it completely wrong. 
I’m sure it would look like I didnt listen. I know it might have looked defiant. But honestly, my whole entire heart wanted to please and wanted to do what I was asked.
I wish teachers, etc. understood that part. Because if we could do it right…we would. 
We need more education on the basics of who we are. And again, like many disabilities, we are not all the same. BUT, we do have general characteristics/symptoms that fit under FASD. A spectrum of the disorder. 
This is an example of what I have experienced when it could appear defiant or that I wasn’t listening. “Ann, go downstairs and get peanut butter, sugar, and napkins.”
As I walk downstairs, I am going through my head what I was told. okay…peanut butter…..ummm…

I bring up the peanut butter and put it on the counter. “What else did you say?’
“You didn’t listen to me.”
I’m quiet because I do not even know how to answer that statement. 
An example in the classroom is the teacher is talking. She gives instructions to the classroom. I hear the first few words than the rest becomes…blah, blah, blah. I have to look around to see what the other kids are doing so I make sure I’m doing what the teacher said. It looks like I’m cheating. I’m not. I simply want to understand what I’m supposed to do. I still do not understand. I sit. I don’t do the work. I want to do it, but I don’t understand what I’m supposed to do. The teacher tells me again. Many steps in a row. I only remember the first couple. Again, confused.
Defiant? no.
Didn’t listen? no.
Wanting with my whole heart to do what was asked? YES. 
Defeat. only to feel like I failed. I didnt do what I was told. I let people down. Everybody else understood, but me.
This is why understanding FASD is so important. If the education is out there, than teachers will understand that one instruction at a time works. Distractions in the classroom make it harder to focus. Slowing down speech is vital. Making sure the person with FASD understands, is key. If not, don’t make a big deal out of it. Patiently, explain again. One word at a time. Processing is hard. Allowing as much time as needed for the person to understand what they are supposed to do. Once we get it, we will do it and we will give our all. And we like PRAISE when we do it right…lol. 
I know for me, I am this adult, immature kid that loves making people happy. My whole being lights up when I know I did something right and that I made others happy. 
Well, that’s it for now…
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I am FASD and…

You know, for a long time, I thought I had autism. A neurologist believed that was what it appeared to be. For some reason, when I thought it was autism, it seemed okay with me. It was like something that I understood. I don’t mean mean medically, but it was something I was able to accept more.

When someone asked me if my biological mom drank when she carried me, I said, ‘yes.’ I didnt even think a thing about it. They gently decided to tell me that the neurological disorders they saw in me were a lot more extensive than autism. I didn’t even know what to make of it. I wasn’t completely understanding her. I don’t think my brain was ready for what I was about to here.

After validation, it took a long time for it to sink in. I really lost my breath for awhile. I have no idea why there is such a stigma attached to having FASD.

Is it because it was a choice for me to have a life-long disability?
is it because it could have been prevented?

Maybe.

There are just things that seem to have something attached to it that makes it not seem okay.

I have had to do a lot of soul searching to not let it define me.
In fact, I think that it makes me a better person.

I know that does not make sense, in a lot of ways, but I have to tell you, there are things about me and others I know with FASD that I just would not trade for anything.

I am very passionate.
I am very loving.
I deeply care about people.
I am very sensitive.
I really, genuinely want to help people.
I want to work harder than anyone to work around my brain and find a way to do something that I have been told I am unable to do.
I have a deep passion for communicating in creative ways.

I did not speak at all as a baby. I was labeled failure to thrive.
Most of my childhood and adult life, I have heard that I simply do not get across exactly what I mean.
I would say I stayed mute a lot of the times and chose to because it was just too difficult to convey thoughts, feelings, and emotions in speech.

I don’t understand abstract very well. Trying to convey those things in speech is almost impossible.

I found writing, drawing, and photography very young.

I wanted to convey in the written word as much as I could.
I wrote notes to everybody if I wanted to tell them something. Even adults.
It just made it easier for me to say exactly what I meant.

I found the art of drawing was a release for me. I was able to capture a lot of what I felt in a creative art form.

When I found myself behind the lens of a camera, I wished the world could see things the way I did.
I took pictures of everything.
When I have a camera in my hand, I literally see beauty in every day life.

I see more than just ‘good’ beauty, if that makes sense.

I see beauty behind the pains of life as well.

As a journalist, I covered the hardest of stories anyone could imagine.

I covered murders and had to be up close and personal with those who were traumatized.

They let me in their homes and in their lives.

I didn’t love capturing their pain, but what I loved was capturing their love for each other in the pain.
I saw things a lot of others did not see.

The gentle touch from one person consoling another.
The wiping away of a tear.
The hug during a horrific moment.

I wouldn’t change that for anything.

There is a a fantastic things to being FASD.

We absolutely can LIVE and we absolutely can see LIVING in ways that others do not.

Actually, we are and can be very productive people that can be used in amazing ways.

I have had times when I have felt completely defeated.

Fortunately, that does not last long…lol. I don’t know if it is my short term memory problems, or the fact that I can forgive within five minutes of something major happening. it could be that I trust more than I should and that I have a more childlike spirit about me…lol.

Not sure.
But I wouldn’t change it.

I have had to learn to love me the way I am and be the best I can be with who I am.
Sure, someone drank when I was in their body.
Sure, it has affected my ability to read, comprehend, and retain things.
Sure, it has affected my eyes to the point where I have no depth perception and my eyes do not converge and I have to have specialists to take care of these needs.
Sure, I would prefer to eat a microwave macncheese every day of the week.

I am stronger than most.
I am more determined than most.
I am FASD…Hear me roar…lol.
I am FASD…I will soar…
I am FASD…I will not give up without a fight!

Learning how to do THE WORLD with FASD

I did a photo shoot on Saturday night and Sunday afternoon. For those us who live with FASD, it is so hard to walk into an environment with a lot of chaos.  A lot of noise. A lot of commotion. People talking. Very loud.

The event was held at a bar type atmosphere. I have been covering stories, as a journalist, for over seven years. I always have this thing about walking into a new place. It takes me awhile to get acclimated to my surroundings. My external brain instantly told me to calm down. She grabbed my camera and started helping me.

I told her, “I don’t know what to do. I don’t know where to start. I’m really overwhelmed.”

Those of us who have FASD have to be so thankful for those who step in and know when we need help. I rarely go anywhere ‘new’ without an external brain. Just having that person with me, instantly keeps my anxiousness level, down.

During the Saturday night shoot, my camera was not set right and I instantly felt anxiousness rise inside me. My body had already experienced a shock when it walked in the door from the noise and confusion. Fortunately, I knew what to do.

I have learned that living with FASD is a lot about knowing how to handle the environment around me.  I have learned to take a few minutes to breathe. Just stop and step away from the chaos, for a few.

Knowing what we need when we need it is VITAL to LIVING with FASD.  Understanding that OVERLOAD and MELTDOWNS are right around the corner if we do not take care of ourselves.
We are no good to anybody if we do not catch it in time. There are warning signs that overload is around the corner. I start to get agitated over small things. My skin starts to ‘crawl.’ Anxiousness begins to build.

Nobody knows yourself better than you…and an external brain. PAY ATTENTION.

I took a breather and paid attention to my external brain.  Those couple minutes, sitting away from everybody, can calm us just enough so we can reenter the ‘world.’

Our brains are absolutely not wired to take in a lot of stimulation. I have pushed through and before I know it, I am a zombie. Unable to talk or take in another second of sensory information.

I have hit the bed, after an event, completely unable to move. Those with FASD have to put forth so much energy in a day, it is like running a marathon.

These are the things I have learned for my own sensory health. Go off by myself. Turn off the lights. Turn off all noise. Take a bath. Put a hoodie over my head. TAKE A BREAK FROM LIFE. If you take care of yourself when its small, you don’t have to check out for days.

Also, get an external brain that is good for you. This is a person who can read you before you can read you. This person needs to have your best interest in mind when you go anywhere and they need to  make sure you understand all social and environmental cues. They know that you are looking to them for understanding, reassurance, and calm. They know when to step in and when to let you go off by yourself.

I have two, and like I said, I wouldn’t go anywhere NEW without them. They are my feelers. And most importantly, they don’t make me feel bad about needing that. They don’t make me feel NEEDY.  FASD individuals are survivors and determined. They are not needy. I had someone call me that before when they learned that I needed more help than the average person.

I knew that person was not good for me. My external brains are encouraging, empowering and recognize my struggles and give me credit for being determined when life is so difficult.

Surround yourself with what’s good FOR YOU and LEARN how to take care of YOU.

Regardless of what our brains want to do, we can work around it

Regardless of what our brains want to do, we can work around it. You know that saying, when there is a will, there is a way. There really is.

There is not a day that goes by that my brain works against me. I just find another way.

When I was in school, I was not able to understand the teacher. There were too many distractions and all I really heard was blah, blah, blah. I hear about every third or fifth word. I would always look down in school because I did not want to be called on. I know it looked like I wasn’t trying or paying attention, but I really was.

When I was in 10th grade, a teacher called me after class. She asked me why I was not taking notes in the class like the other kids. Guess what my response was?

I DON’T KNOW.

I really didn’t know why I was not able to understand her enough to take notes. I saw the other kids writing like crazy, but I was back on her first sentence and I did not know how to tell her that.

I started taking a tape recorder in class. I started taping myself reading out loud when I was studying at home. I would play it back. I would reverse and reverse and reverse until I heard it. I would then write it down in a way that I could understand it. That is what I studied for tests.

It took me about five hours to do the homework when my friends were done in one, but I was determined to get that grade. That grade was not an A. It wasn’t a B.

I generally worked that hard for a C.

I got that C because I turned in my work and I made a valiant effort to do the work.

I was not able to retain it for very long, but I would try to remember it long enough to take a test.

I found a way around my brain.

Today, I still have problems. That does not go away. I ask people to talk slower. I ask them to repeat all the time. I try to get every word and I ask what does that mean a lot.

When I watch a show with family, I simply ask them to pause to explain so I can be where they are in the story.

You have to get past being embarrassed. You have to get passed needing to be where everyone else is. You have to be willing to be okay with who you are and not be ashamed.

I know. I still struggle with wanting to be like everybody else in the room. I still want to understand and communicate like the average person.

I had a roommate in college. She did not even study and got A’s. I studied around the clock for the C that I deserved! I was happy when I saw that C on that paper because to me it said A. I had earned it. It was all mine. I was proud.

Living beyond our limitations

I had the amazing opportunity to write for Jeff Noble with FASDForever website. He asked me to write a blog from an adults perspective. This is what I wrote. http://fasdforever.com/?p=506

Because of the response I received and the amount of people I can that it helped, I want to continue to write about FASD. I want to continue to offer hope that are living with this dreadful disability. Key word: LIVING.

It is possible to LIVE with FASD. It is not a social death sentence. We absolutely can live beyond our limitations! We are so much more than what the doctors say. They only see where the brain is malfunctioning. What they don’t see is our determination to make it beyond all that. No matter how many times we are told we cannot do something, we will try that much harder to make it happen.

For a long time, I thought I was autistic. I actually had an easier time accepting that fact. When I heard that what was actually wrong with me was I was FASD, I lost my breath. I’m not sure why it affected me so much deeper, but it hit me to the core of who I am.

It actually made sense to me. I knew my biological mother had issues and had drug and alcohol problems, in those days, but I never linked that with the day to day struggles that I have. It was hard for me to realize, no matter how hard I worked, I would still have these disabilities. I am an overcomer.

The hope came in when I realized all my life I had been compensating for my disabilities. I learned how to learn. If a thousand ways did not work, I found one that did. I would not give up until I made it happen. I might spill everything along the way. I might not understand 80% of what goes on around me, but I am still going to be the best I can be, regardless of these disabilities.

I had two choices when I realized I was living with FASD. Number one, roll over and let it beat me. Number two, LIVE and no matter what, never let it beat me.

I am very anxious to do things on my own. I find external brains to go with me or I go a path I have always gone.

I have passions that are so deep that it bleeds through in everything I do. I decided to take those passions and see if I could make money from them.

We might not be able to do what everyone else can do, but they cannot do everything we can do. Many of them do not see the beauty in the world, like we do.

I stop to smell the roses.
I look up to watch a plane.
I sit in the dirt and still play.
I watch the beauty of nature with the eyes of a child.

I wouldn’t want to change these things at all.

Today, with FASD, I LIVE. I offer hope to those who think they will never be able to make it to tomorrow. I offer strength as one who has already gone before and proven that no matter how hard it is, you can do it.

If I can get a masters degree when they told me I would not even get a high school education, anyone can. I did not let my disability rule me. I had to be more creative.

I could still keep my dreams and aspirations. How I got there had to change a little, but I still got there. One frustration at a time…lol. Yea, I’m still working on that one.

I didn’t say it would be easy, but it is possible.