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How do I say this? Yesterday pretty much knocked the wind out of me. I can do two things with it. Either I can let all that the neuropsych guy said and let it take me down for the count or I can continue to do what Ive always done and let it empower me even more. I prefer to let it empower me. He even said “hats off to me with all I have accomplished.” I have proven even more to myself that most people would not have accomplished all I have with my brain. I just never saw that ‘not’ doing it was an option. When they told me I would not graduate high school. I just said watch me get a masters degree. When they told me I would never hit a ball. I said i will practice until I get homeruns. I could go on and on. I have always found a way to compensate. If I cannot do it this way, I will find another way. I am one determined mother ______. if I can say that. I am having a little bit of a hard time today. I never expected him to say a couple of the things he said. Trying to process.

I looked up where my IQ falls. It basically described me to a tea. I was surprised. This is what the definition of it said under the IQ I just found out I have. Above the threshold for normal independent functioning. Can perform explicit routinized hands-on tasks without supervision as long as there are no moments of choice and it is always clear what has to be done. Assembler, food service.

I know that as long as my day is without choice and everything is spelled out to me from the first moment of my day until the end, I am anxious free and fine. Give me choice and give me a day where I am just supposed to get thigns done but it is open ended…I will accomplish nothing at all. So…it is exact. That made me even sadder. I thought I had a higher IQ. But the thing is they figured in my working memory which he said never developed and my adaptability or whatever that is never developed. So with all that said…he did mention disability.

You know, I’m a tough one. I will never ever give up. When he showed it to me, I was not really processing it. I didnt even hear the number he threw out there for my IQ. My friend, who went with me, mentioned it later in the meeting and I said, “huh?” I said thats my IQ? thats really low.

I looked at his paper which showed in a nutshell that without a doubt 100% I have Autism and some of the stuff that was in there with all the cognitive stuff, etc. could have happened in utero. Hence what I thought with the FASD stuff. But he did add say that the social component does not have to always be there to the extent that I have it with ASD. That the social anxiety with my ASD is so off the charts that he actually gave me that diagnosis as well. So,…this is another day.

Just a day.

I said to him…well all I want to know is how I make this all stronger. He said give me one thing you want to work on. I said my memory. I have like a very low ability to do short term memory. After repetition I can retain things a little better. that is why it is harder for me in the reading, as well. But I have a great word knowledge…I knew that…lol…and I can write…woohoo….

But the ability for comprehension and retaining I do need to work on so he said I need to work my brain because it simply did not develop. The frontal lobe part of my brain did not develop wehre I can bring forth information, etc…

Anyway, he said go to luminosity.com.

You bet I will.

I will do whatever I can to make my brain stronger.

This was harsh news, but news that I know will just make me stronger.

And I said to my friend, it just proves how strong I am. How I was able to accomplish these things that I never should have been able to. I just found another way.

And I’m not going to stop.

just another day.

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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

New routines

I have been hearing a lot about FASD kids going back to school and adjusting. I just read a post on an FASD teen going off to school and the major adjustments she is having to make cuz of all the change. She wrote,…


I know for me, whenever I experience an extreme change; I get uneasy and it will take me a couple weeks to adjust to a new routine. In overload mode, I crash and hard. Its the overload of new people, new expectations etc.

I just started a new job. As an adult with FASD, I can say the feelings of overload are just as much there now as they were as a kid. I don’t think the feelings and overload are any different. The only difference is how I deal with it differently. this week was one of my hardest weeks in a very long time. My routine was different. Everyone around me during the day was new. People I dont know at all and I don’t trust. Even if they told me they are really amazing people and I should trust them, it will take some time. Being FASD, you need people around you who you can look to as external brains. I constantly rely on others around me. I look to them to tell me what I need to do. I judge their actions and facial expressions to let me know if something is unsafe or ok. I have the inability to judge understand a lot around me. It is crucial that I trust the people in the room who are guiding me for that moment.

Change is a scary thing. Change alone can make stress go up so much for us that we can fight overload immediately. I spent the week in a new job and then spent the weekend totally consumed in busy. My skin has been hurting so much the last day, I could cry. I start work again tomorrow and it will be completely busy all week again. I know that my down time needs to be absolutely priority for this next week or I will hit a wall.
Today I was out and I was talking with someone and I did just that. My entire body had like this what I call short circuit in the brain. It is literally from too much overload on my body. My mouth just stopped and my entire being just stopped for a few moments. it was so hard for me to come out of it. Normally, I would just go off and recover from that, but I couldnt. I took about 20 minutes before I said anything to the people I was with and then I gradually came out of it. When that happens, I know that I have pushed it beyond my limit.
Staying quiet and being completely focused on what I need to do to not take overload into a meltdown is crucial for the next week. Fortunately, I love the new job. I am currently organizing the office and for me, organizing is a calm.
New environments. New people. New assignments. Trying to understand the new around us. Trying to figure out what we are supposed to do next or even first. Trying to figure out how to execute in a new place outside of our routine…All very very tough. 
For those caregivers, I feel for you. Patience is the best gift you could give all of us. Let your FASD person do what they need to in order to calm. Anything repetition that works for them would be good. Someone told me today that a person they new who had autism just would comb and comb her hair and it was calming for them. I know for me sometimes it is writing or a bath. Also, leave more room for error. Frustration is already up and when that happens, there is more chance for misunderstanding cues and knowing what to do. As we settle and new routines become just a normal routine…we will be good…But it takes time.

Look at us and say well done…

Those of us with FASD have a different journey than yours. We are running the same race, but our starting blocks were set ten miles behind yours. Our ears hear jumbled words when you speak. We don’t understand instructions. We are often misread or misunderstood. We fall over things more because our eyes don’t see like yours. Our senses do not allow us to understand our surroundings and it causes us to want to run. Our brains don’t think like yours. It is critical that we are surrounded by people who know and understand the disability, but don’t look at us critically when we make mistakes. People who are willing to explain things several times, but with patience.  They look through their hearts and see our worth. They allow us to do something in an hour that would take them five minutes. We need you to sit down and do things with us when you see us struggling, but don’t do it for us. And, when we do our best…not your best…but our best…smile. It might not look the way you wanted. It might not be the exact instructions you gave. It might be completely different than what YOU expected, but…look at us with much pride and say well done! Acknowledge the effort. Be proud of the heart behind the work. Make corrections, but with love, a calm voice, and with a huge emphasis on the things that are right. Allow someone with FAS to believe they are still okay even though they do things so differently. let them know that even though they struggle more, they are still very important. They are still highly intelligent. They are still giving it their all. And really, isnt that what is most important. 

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…

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…

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!