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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! 
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FASD and dealing with death

I’m not even sure if I can write this, but I’m going to try. I have always been a survivor. I think that is a trait of being FASD. Really, we have no choice. It’s either survive…or die. We have so much to deal with each and every day with just the small, every day stuff, that major things can knock us out of the park, for a while.
We are so all about routine, but sometimes life takes a turn and routine and security is not a possibility for quite a while. We spend the next days trying to find a new normal, quickly, so we can get back to a new routine.
We all have what I call mile markers in our lives. Those moments  we were changed forever. …never to be the same again. It can be celebratory like a graduation or a marriage. It can also be a very traumatizing event. I have shared many times in the past about my dad dying when I was 11. That is probably THE most mile marker in my life. I was never the same after that moment and I was never able to capture any part of myself again. It was like time was divided on that day.
Just 2 weeks ago, today, my External brain, my daughter, and I were just doing routine. I had just come from the awards ceremony for my journalism awards, a few days before. We were sitting on the couch and someone who had just been to the nursing home, where my EB’s dad lived, came to the door. “Your dad is doing really bad,” they said to my EB.
We already knew he had been diagnosed with double pneumonia, the night before. Two days before that, he was fine. I mean FINE! Well, for him. J and I were checker partners. I mean, he was 84 and had alzheimers, but he could play five games with me. They were his rules and I never knew what color I was, but I went with the flow. Just to see his face light and get that cocky smirk when he beat me. He would tell the family that I was no good…lol. I loved that he was so proud of himself that he was winning. He had lost so much in life. It meant so much to me to let him have that. It was a weekly routine for me. My EB and I would go up to see her dad at least 3-5 times a week. I wanted to go see him. Go grab his favorite sweet, chocolate cream stick and coffee and we would break  bread together…lol.  It had become very special to me.
One thing about us FASD people, we have heart! We connect deeply with people. I mean—DEEPLY! Maybe people do not realize how much we feel, but we feel so much!! A huge problem is that we do not have the abilities to express how we feel and when trauma strikes, we shut down.
For a week, after that day, I fought shut down like I have never before. I gave a billion percent to my EB and her family. I didn’t have it, but I did it. I was constantly fighting overload, but another trait of those with FASD is we want to help and make a difference. We will do all we can to see that we can get past our disabilities to make that happen.
I loved J. J…not Jay… That was his license plate on his truck. No initial either. Just the letter J. He was an amazing man. A man of God and wisdom and for some reason even tho he had Alzheimer’s, he was able to talk about God for hours. He had been  a preacher.
J had trouble remembering and talking and getting fixated on things. He had a hard time connecting with people, but he connected with me. I think we had a lot in common after his stroke and having a brain problem, like me. Different, but we could speak the same language.
I did not leave his bed for just about 2 days. Didn’t sleep for about 50 plus hours. Didn’t matter. It was J. I loved him. I watched him go downhill and I prayed God please don’t take him. Please. All the family was there. At one point, one of the most joyous times while he prepared himself to go into heaven, the room was full of family. They all sang his favorite hymns and there were plenty of tears. He had five daughters and a son. A wife and a legacy.
When he took his last breath, mine was knocked out of me. I’m just starting to breathe again. It still does not seem real to me and that he can be gone. It does not make sense to me. He had been so strong. I understand. That’s a part of life.
Still does not make it any easier.
I tried to write a few times after his death.
All I could get out was the word, Death.
I never have trouble writing.
The next week we spent in a land of confusion, with funeral plans, calling hours and the actual funeral. The part I am most grateful for, the family let me put the slideshow together. The family gave me more and more pictures to plug into a program so it would be a special presentation. I was useful. Lots of times, we get lost in all of that planning and craziness.  We really don’t know what to do and that is the problem. A task like putting a slide show together where I could stay focused on one thing for hours and hours, off in my own little world, and be productive for the family. I knew I was helping and making a difference. It was something I could really do! And most importantly I could do it for J.
I loved him. Those of us that have FASD, are lost in a world where we do not understand very much and we are swamped with emotion. We are confused. We are lost in the whirlwind of all the planning around us. We literally just see confusion when everyone else knows what to do. The emotion and pain is so deep and we do not have the ability to express it. As I said with my dad’s death, just having someone put their arm around us and say let me do this with you. Let me explain this to you. Do you have any questions? Sometimes, just someone sitting with us is all we need. Sometimes just a hand on a shoulder with the question, “How are you?” is the best thing you could ever do for us.
It takes a long time for someone with FASD to recover from something like that. It take everyone a long time to get over a death in the family. But someone with FASD or autism, someone with a non-neurotypical brain, it puts the brain into shock.
I was actually proud of myself. At the funeral,  my brain went into meltdown. It had been a week of constant with no sleep and there I was sitting in a room with people all around me (which I would not do on a normal day) and I  was in a meltdown. I normally grab my head to stop the wires from crossing all over…lol…just a way of explaining it… I needed a release. I couldn’t take a bath. I couldn’t put my hoodie on to make it stop. I couldn’t do a thing, but leave the room. I did not want anyone to notice me at all and that I might be having a hard time, so I sat. I grabbed the sides of my chair with both hands with all of my might…and I prayed.
I wanted to give. I wanted to be there and screw my brain is all I could think about. I didn’t care what happened and how bad I physically felt, I was going to be there for my EB and her family.

We are the ones who will lie with a dying animal until it dies. We can’t give like everyone else lots of times, but we give all with our heart.

It’s easy to think we want to be a part of the wallpaper and disappear. In some ways we do, especially when we hurt deeply. The best thing you can do for someone with FASD is not let them go through a death alone. There are a lot of confused thoughts and I know I feel completely lost. 

Her mom, grabbed my hand on her way to see her husband at the funeral home, for the first time. She said you are going up there with me.
That meant everything to me. We laughed when she said it with that smile she gets. I said, “Oh, are you doing this because you know I don’t want to go up there?” She said, “I’m doing it because I know both of us are having a hard time going up there.”
She included me. She met me where I was and she let me meet her where she was. Several times during calling hours she looked at me and communicated how she felt about the moment’s events with a changed facial expression. I appreciated that. Even in her pain, she thought of me and included me and thanked me, at least a dozen times and let me know how important I am to her and her family. She let me know that what I did made such a difference in her life and in J’s.
“Thank you, Ann, for all you did after he died,” she said, “but mostly, thank you for what you did before he died. He connected with you.” That meant so much to me.
Having FASD is like having a brain stop in all major traumatic events. Our brain literally stops. Sometimes, that hand, that glance, that thank you, that small job that we are giving to help, means everything in the world.

My EB took me up to the casket for one last time. I cried. It meant everything to me for her to do that. The fact that I do cry now is awesome. I was thankful and blessed that my EB let me be a part the way she did. In fact, all of her sisters embraced me.

We already feel different. We already feel left out. We already are not comprehending like anyone else in the room. We are fighting overload. We are fighting emotions that cannot be expressed.
I never knew how much I loved him until he was gone.
J—I love you! You gave me so much in life. You spoke my language. You badgered me and I badgered you until we were both laughing. We like had this understanding between the two of us that I have not had since my own dad died. It was amazing. I will forever remember your smile when you double jumped me in checkers. The day you told me that you didn’t have to cheat to beat me…lol. That just made my day. The Bible stories. Psalms was your favorite book and David was your favorite Bible character. I loved listening to you about your navy days and your childhood days. You made me a different person. Your death changed me. Knocked the wind out of me. But your life changed me even more. Thank you J for letting me in during your worst days. Letting me connect with your hurts and pains and help to calm you at times (you helped calm me too) and just share that last year of your life. It meant everything to me.

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…

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.

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.