You have entered the Spectrum Zone

Archive for the ‘neurotypical’ 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

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! 

Feeling lost

Uncertainty is probably one of the hardest things for people with FASD to deal with. We feel so deeply. We long for love. We strive to be our best. It might not be other’s best, but it is ours. If you are happy with us, we are happy. If you are disappointed in us, we are sad. It’s that simple. We rely on other people being honest to us. I know in my world, I don’t think like someone who is neurotypical. It is hard for me to understand how they think. I can’t speak for all those with FAS, but I am not one to be deceitful. What you see is what you get. I wear my heart on my sleeve. I give my all.

We truly do play on a different playing field than neurotypicals. Our brains are just wired differently. I have a brain of a 12 year old most of the time. When an adult tries to get me to think like they do, I just cannot do it. All that happens is I get confused. If they get upset with me cuz they feel that I did something wrong, I just get more confused. Meeting me where I am, as someone with FAS, expecting me to react and act as someone with FAS helps me so much. I’m just not able to play the game of life like others. I truly do not understand.

I love deeply!
I care deeply!
I feel deeply!
I hurt deeply!

I mean core hurt!

And all I want is to be loved for who I am. Be accepted for where I am at in life.

I will do nothing but love you…deeply!
Just love me back.

I have people try to get me to understand something that I did was not the way society should have done it. Why is your way the right way? Why is mine, wrong?

I’m not upset at you for thinking different.

I know for me, I am really trying to do the right thing. the right thing to you and the right thing to me are just different.

I want to please you with all of my heart.
It hurts me when I don’t please you.
I know for me, I would do anything to make you happy.

All we want…is to be loved right where we are.
We really cannot help that our brain thinks so much differently than yours.
We can’t help that we are unable to understand your ways.

I know many of us go through life feeling lost. I have talked to many of them.
I have some great friends who are FAS and they want nothing more than to have a love that meets them right where they are and understand that their brain simply does not operate like theirs.

The thing is:
We can love…probably deeper than most neurotypicals.
We can help…with our entire person, we want to.
We can be in relationships. Deep, long-lasting relationships.
We probably will give you more than we expect back.
If you make us upset, we will be over it very quickly. We want nothing more than for you to just love and accept us.

It can be frustrating. More on your part than on ours. We just get confused. You, i think, get frustrated with us because we just don’t see the world the way you do. The neurotypical world really wants us to see the world and operate the way they do.

I don’t mind operating the way I do.
I love seeing the world through, I guess you could say, rose-colored glasses.
I love operating at a younger mentality.
I might be naive, but I’m not dumb.
I know our ways our different.
I know that no matter how much you explain it to me, I will never understand your way.
I know no matter how much I explain it to you, you will never know mine.

BUT…

it is okay.

if we agree to just get to know each other and accept that our brains operate differently.

Accept our differences.

Love us anyway.
A meeting of the minds.

Me?
I’m not going to be deceiving.
I say it exactly what it is.
You see it differently.
I really am not trying to be hard or difficult.

Sometimes, I cry at night.
I cry because I feel so lost.
I am lost in a world that I do not understand.

Sometimes, it can be very scary.
It’s not just that everybody in the room gets it but me.
I don’t understand your world.
I don’t understand underlying messages.
I don’t understand if someone says one thing, but means another.

I will give you my all…in all things.
I hope you want to give me yours.

I can’t operate on fast.
I have to take things slow. That is how I process.

I so need people to sit with me and talk to me about what is going on, before it happens. Things that are thrown on me without warning, send me into shock. My system shuts down and then I’m expected to operate like everyone else in the room, but its just not possible.

We are easier going than you think. I know we need routine, but if you explain things that are going on, we will do our best to go with the flow. it’s just when we don’t know at all what’s going on that we get really agitated and can act out.

I know for me? I hate to act out. I don’t see it as acting out, but I know you do. You do and think like someone with a different brain. I know you don’t understand that I need to know all the details before the day happens because changes can be hard for me to adapt. If I know ahead of time, I’m good.

I know for me, I will always be trying to meet you where you are and be my best for you. It doesn’t always seem that way because the way we do and think are so different.

Meet me where I am.
I am trying to meet you where you are.

My heart is in the right place.
I know yours is.

Let’s try to do life together and just understand that our brains are wired differently.

Ask me questions.
Make sure I understand

Please don’t make me feel like I did something wrong just cuz it is the way I do things and the way I understand.

We, sometimes, feel like the world is angry at us for something we cannot help. We did our best, but you are still mad. We don’t understand.

I operate, understand, think, and feel differently than you.

Now, let’s go from here…

Proud

Being someone with FAS is a conglomeration of emotions. I didn’t find out until I was an adult. I knew I had significant disabilities. I Knew what neurologists said, but I stayed in denial for a very long time about how significant. I mean, does it really matter what the professionals say when you weigh in determination and heart? No, not really.

I know they know all the medical reasons to why I do the things I do. I know they can explain why my upper lip is thinner and why the area between my nose and lip are flatter than its supposed to be. They can tell me why my pinkys swerve inward and why my eyes are the way they are.

When the genetics doctor looked at me and said alcohol played a significant factor to your disabilities…its like the world stopped. She didn’t even hesitate. She knew. She looked at my baby pictures and looked at me as an adult and she didn’t even have to do further testing. It wasn’t even a maybe.

There is a spectrum in Fetal Alcohol Syndrome. To find out that you are full blown FAS made me face some hard realities.

It did explain a lot. it connected dots for me. I understood why I had struggled my whole life. Why I couldn’t DO things other kids could do growing up. Why I was not able to function in the adult world like my peers. Yea, I got it.

It made me face some hard realities. DD? Developmentally Disabled? Really? Get a social worker for me so I can get services for being FAS?

Thinking you are FAS is a lot different than a professional looking in your eyes and saying “You, without a doubt, are FAS. That is a whole different level of acceptance.

You know, at first, I don’t even know what I felt. I know I got quiet. Didn’t feel like talking about it. Felt loss, grief.

To know that you will NEVER have the brain that others have. To know that I will NEVER be able to overcome these disabilities. To know that my mom drank and that is the reason…

Cry.

Hard things to face.

I believe that my biological mom didn’t do it on purpose. Forty years ago, they didn’t know the stuff they do now. Plus, she was not one that would have been taking care of herself. Didn’t matter to me. I loved her until she died. I was loyal to her. Even though, she never really recognized me as a daughter, I still recognized her as my mom.

FASDers have to face a lot of different obstacles besides just the disability. Hurts, rejections, and abuse often come along with it. Many of us are adopted young to great families and the hurt stops, but some of us are not.

Some of us have a lifetime of pain, abuse, and continued rejections.

I grieved for the fact that there were losses here. With my biological mom and the fact that I have had to face that there are simply limitations that will never be fixed.

Is this negative? Gosh, I hope not. This is real.

Do I feel less than?
Do I feel a defeat?

NO!! I feel absolute accomplishment.
I feel pride.

I have made it in spite of.
I have surpassed all expectations and I’m not done yet.

Knowing what I have accomplished with this brain makes me even more proud.

Sometimes, I smile just because I say exactly what I want to verbally…lol. Often times, what comes out is just not how I had planned it.

Sometimes, I am complete joyful because I made a meal for my daughter and EB and it was amazing.

The small everyday things makes me know I’m making it. I’m functioning like everybody else. I can do this!

Oh, the big things? Getting my masters degree when they said I wouldn’t graduate high school? Driving when they told me I never could because of my eyes.
Hitting home runs when they told me I would never hit a ball.
Becoming an award winning journalist when they said I would not be able to communicate well.
Being a great mom when I had so much against me just as an individual, let alone take care of another.

I’m proud!
The determination I feel when I wake up in the morning to beat the crap out of the day a head of me is what drives me.

The exhaustion I feel even sometimes mid-day lets me know that I am fighting one hell of a fight.

No, I’m not ever going to let any disability beat me.

Realities can hurt. They are painful.

BUT…

They didn’t see me coming…

I told myself I was going to be the BEST ANN I could be.
I told myself that I was going to LIVE.
FASD or not…I’m going to BE.

FASD acronym

Who are we? What are we? Let’s break it down letter by letter.
FETAL ALCOHOL SYNDROME DISORDER stands for…


Feels deeply, forthright, fabulous, fun-loving
Excited about life
Talented
Achiever
Loving, LIVING

Able
Loveable
Courageous, creative, curious
Ornery
Hopeful, happy, hilarious, honorable
Ambitious
Likable

Sensitive
Youthful
Nice
Dedicated,
Resilient
Original
Motivated
Energetic

Determined
Imaginative
Sincere
Optimistic
Remarkable
Dynamic
Enthusiastic
Rich

Fits…surrender…acceptance

I had it in my head that I was going to go to the flea market to sell my photography. Last week. I had just about everything ready to go…except for me. I got hundreds of photos ready, framed and matted 30 of my best prints. My external brain helped me to think about everything I might need. We got order forms for special orders, a calculator, grocery bags so I can bag items I sell, extra money for change.

I put together calendars, mugs, notebooks, and other items to sell. My external brain helped me make a display board. I got a table for the display and filled two picture books filled with my photography for other options. 
I thought of everything…I thought.
I was getting ready and felt my anxiousness grow. I started thinking about talking with people, doing math on the spot, figuring different orders, and where to park. I knew my senses would be heightened with all the people, etc…which would add confusion. AND I knew I would be doing all of this without an external brain.
Now, I know I have said I don’t do anything new without an external brain, but I really thought I could do this. I mean, I did have it all mapped out. I have this thing about picturing things before I do it. It works a lot of times. 
I was a swimmer and a swim coach. Swimming was one of the things that calmed my anxiousness. Going underneath the water and being consumed by water from all sides so relaxing to me. A sensory thing, I’m sure. Like a weighted blanket feeling. I would swim for hours and I was good at it. (Not bragging…lol.) Hey, when I struggled at EVERYTHING in life and I finally found something that I could actually DO without struggling…I was thrilled!
As a coach, I had my swimmers close their eyes and picture themselves winning. We would do this leading into major meets. I would start them from the gun. Stroke by stroke they would go through the race with a win at the end.
I am an absolute believer in if you are determined and work hard enough at anything, you can be successful! I live it every day and so did my swimmers. 
Now, here I was, the night before I was supposed to sell my photography, by myself, at a market….I freaked. I pictured myself doing it. Over and over. I walked myself through all the steps. I paced. I tried to work through. My anxiousness did not subside.
My external brain (EB) saw that something was not right. I finally told her. I was even thinking about keeping my 16-year-old home from school to go with me the first day. My EB said, “why don’t we just go Saturday. The three of us will go. We will see what it’s like, figure everything out together so you are not so anxious. We will do this together.”
She asked me why I didn’t tell her. I told her that I wanted to do it myself.

I always need help. This time, I wanted it to be different.

See, FASDers DO NOT want to rely on others. We WANT to do it on our own! 
Surrendering that is soooooo hard!
I’m an adult. I want to do adult things…by myself. 
Oh, I got the routine stuff down. I can do that stuff all day by myself. I love the independence. I have no problem shopping in the same stores and going to the same coffee house. 
BUT…
Throw in something new…and I’m done.
I started to have my own little pity party. I even started to cry. I had to get to the point that I was okay having someone do this WITH me. I had to let myself get to the point where I would ASK FOR HELP.
I am not the best at asking for help.
“I CAN DO IT MYSELF” I want to scream.
Reality sinks in and I have to look at myself in the mirror…and again…surrender some tough stuff.
I can do anything the first timewith help.
Once I can rid of all confusion in a situation, it can become routine and eventually I can do it on my own.
I found myself angry. I got pretty upset that I HAD to ask for help.
I had to be okay with who I was and this disability.
Doing anything new is scary for someone with FASD. 
Yes, we might throw a fit about it.
We might get angry because honestly…we really want to do it by ourselves.
We are actually pretty smart people…we just have a brain that doesn’t work like everybody else.
AND we are smart enough to know this.

We watch everybody in the room understand what’s going on when we are confused.

We KNOW we can’t process like everybody else.
It takes us longer. We DO know that.
That is why we have to surrender to the fact of letting someone help us until we get it.
Once we realize that you helping us will help us get independent in a certain area, we are going to work that much harder.
We give 110%. 
Always have.
I was always one of the hardest workers in the pool.
I was always determined in the classroom despite my confusion.
It’s the surrendering and accepting that was harder for me.
With time, we get there…but we need our little fits along the way as we recognize and realize that we are different. That we aren’t able to do something that everybody else can do can be frustrating. 
I have to realize that if I don’t ask for help, I will just get stuck. I will probably not do it at all. That is an incentive for me.
Accept 
Surrender and ask for help. 
Problem solved.
Eventually do it by myself.

Side note: Added after I wrote this: An FASDer (RJ from Flying with broken wings) just said this to me about this blog…We have to remember that giving in is not giving up. That is AWESOME! Love it! True! 

All I hear is blah, blah, blah (reposted from my blog on FASDforever)

My blog that was posted on Jeff Noble’s FASDforever. Thought I would repost on my blog. It was originally posted and can still be found on FASDforever website. With FASD, it is hard to hear what others say, a lot of times…hence the title All I hear is blah, blah, blah. Well, I’ll let you read it…




There are experts and there are experts. I don’t have a degree in genetics. I don’t have a PhD in anything. In fact,  I don’t understand a lot of what goes on around me without an interpreter. What makes me an expert? My mom drank when she was pregnant with me. I might not understand the brain, but I am still an expert. I have lived with this FASD brain for over 40 years.

I look like the average adult. I have blonde hair and blue eyes. No one would notice anything different about me just by looking at me.Most of what is wrong with me, people can’t see.
Unseen things are hard to understand. I know that one first hand.

When I was first adopted as a baby, I was diagnosed as failure to thrive. My toddler years were spent in constant struggle and by the time I hit kindergarten, there was something noticeably wrong.  My teacher contacted my adoptive parents and told them I needed tested. FASD was not a diagnosis, back then, but the neurologist had bad news. He informed them I had significant brain damage and I would not even graduate high school.

Struggling was all I knew. If i was going to do what the other kids were doing, I simply had to find a creative way to make it happen. Struggling was more than everyday life.It was every moment life. I couldn’t see words like other kids. My eyes did not converge and i had no depth perception. So, I saw two of everything and the world was flat.  Yes, Christopher Columbus, the world is flat…to some.

I couldn’t cut like other kids. Scissors and buttons have never been my friends. I knew if I was going to make it in this world two things had to happen.  

Number one, I became the most determined kid in the school. I might have gotten C’s, but they were C’s  I earned. I learned how to learn. I adjusted. My life has been a continuous Thomas Edison quote. When he was inventing the lightbulb, he said, “I have not failed. I have found 10,000 ways that won’t work.” Well, we all know what lights the room at night.

I know what it feels like when everyone in the room knows you are struggling.They told me I would not graduate high school. I got a masters degree. They told me I would never hit a ball. I practiced hours until I was hitting home runs.

I know there is a lot I am not able to do. Sometimes, that’s hard for me to accept. Sometimes, I blow up in frustration, but I blow up because I care. I blow up because I want to do things on my own as much as my loved ones want me to. I want to understand the world around me as much as everyone else does. I really don’t want to have to look to others to interpret. I want so badly to understand what everybody else understands, BUT, I have to accept that I have to incorporate helps in order for me to be my best.

The second thing is that I can LIVE with FASD. I might not be able to ever figure out my bank account, but I have an external brain that knows how. I might not be able to hear everything that is said, but if one of my interpreters is not there, I can always turn on my tape recorder and play it back later to get all that was said. I might have to rewind a few times to catch all the words because of auditory processing disorder, but I learned a way to beat my own brain.

I found my passions. Sure, there are so many things that people with FASD cannot do, but there is plenty they CAN do. I found I am not the best verbal communicator, but I can write. I love photography. I became a professional writer and photographer. I was a journalist/columnist for almost a decade, wrote a nonfiction book, just finished my first novel and have online photo galleries.

Hopes and dreams don’t have to be gone when a person is diagnosed with FASD, they just have to be different.