You have entered the Spectrum Zone

Posts tagged ‘fetal alcohol syndrome’

My dad


My Dad! I was 11 years old when he passed away, but he has been THE force behind everything I do. He was not my biological father. He adopted me when I was a baby. From the moment he got me, he loved me. He was an amazing man. I only had him a few short years, but he had such an impact on my life. Never missed a swim meet. He was my biggest cheerleader. When he found out that I had significant brain damage as a kid, he rebuilt our entire basement to have helps for me. He built a balance beam to help with spatial balance, he built me a chalk board because I had to do eye exercises all the time. He built areas for me to work on things that would help me. I got a piano to help with eye hand. I got in swimming to help with what they would not call metldowns, but swimming helped me immensely work all the muscles and get that build up of frustration, out. I really think that was why I was as good as I was. I just put every ounce of energy I had in that pool, and it worked…lol. He sat at the end of the pool, every race and wrapped that towel around me when I finished. When he passed away, nothing mattered as much and all the helps, kind of went away. It just did. Not anyone’s fault. Adopted mom had to work and she had a very taxing business…lol…literally, she owned her own tax business. And she just worked many, many hours which left me home, alone, most of the time. I could no longer go to the insitute that I was going to for helps. Just everything was dropped and my sister was given away to the system. (Long story–one I dont even understand) But this tribute is to my dad! Try to take someone on the spectrum and have them lose THE most important person in their life at such a young age. It was a tough one. I know, for a fact, I was never the same again. I have recovered and become strong. I do a lot of what I do today because of who he was for me. I often ask myself would dad want you to give up? NO! He would not. He was a WWII veteran whose ship was bombed outside of Japan and he was missing for days. Obviously, he lived through that, but the Navy ended up paying for all four years of my college for the impact that the war had on his premature death. I wrote them a letter for the War Orphans Scholarship and I won. So, in a roundabout way, my dad did end up paying for all 4 years of my schooling so I could get an education. I was always so proud that he was my dad. I would wait for him to come home, every day, after work. I would hide. He would have to find me and I would jump out like it was the first time to ever meet him…that was the way I was. I greeted him like he was the most amazing person every day. 

The last day of his life, he kissed me good bye in the morning, went to work. It was a Tuesday before Thanksgiving. i went to school and swim practice. A neighbor picked me up from practice. I asked where they were. Neighbor said that my dad was at the hospital, just some tests. Nothing bad. He would be fine. She had me go to her house and I hung out there until a call came for me to go home. She dropped me off and I walked in to a house full of people crying. My adopted mom was sitting on the couch. I said, ‘What’s wrong?” She said, “your dad.” I said “Is he sick?” she nodded yes. I said, “could he die?” she nodded yes. I asked, “Did he?” she nodded yes.

That was it. I ended up the rest of the night in my room. I was pretty much a quiet kid that really just did not talk or share how I felt. When things like that happened, I shut down. I really did not have an adult come around me, like the entire neighborhood came around her. It is interesting how the quiet one in the room is really not paid attention to. 

I do not remember my sister even being there then. Have no idea where she was. I still do not know. (Again, long story) 

I miss him. It was so long ago, that i cannot believe that I still remember sitting next to him on the couch every night after work–just him and me. Just chillin. In our own quietness. It was our time.

Dad–I miss you and I love you!

What a diagnosis does

A diagnosis.

what do you do with it?

People have said it’s a good base. 

true. It is a place to start.

Then what?

I mean it doesnt change who I am or what I am doing. I’m still the same Ann I was the day before I was diagnosed.

it does confirm what many have told me and what I have thought for a very long time.

It does confirm that I am not faking anything. That is really just a side thought. But it is like a confirmation to me that I really am who I am. I really do have these things and I’m not faking it or making it up. I don’t know why I needed that, but it was a validation. Every single avenue of the testing that they did, even the cognitive part pointed to Autism with their being more underlying cognitive stuff that happened in utero (FASD). 

I think the people around someone with Autism or FASD need that validation as well. To hear from a professional that “no, your kid is not doing this to get out of things. no your kid really does have cognitive and sensory issues that need to be worked around.” I think that helps.those who are with that person on a day to day basis. I think it helps confirm their thoughts about their loved one. I think that is necessary to get the helps at school and in therapies. All it takes is that one person to say YES you have Autism or YES you have FASD to get the IEP’s in place. to get all the helps in place for that child/adult that was needed and was not being addressed. The adults can rest easier now that their child/loved one will get the helps that they have been fighting for with no success. 

It gives answers to questions that loved ones have had for years. why does my child not want to play with the other kids? why does my child not like to be held or touched like other kids? why does my child not look at me in the eyes?

These are just a few of the questions that make one understand.

Now that the person has the diagnosis, they no longer have to be forced to do the things that are considered…’normal.’ 

I know for someone on the spectrum to look people in the eyes is hard if they are trying to hear you at the same time. So, that gives the okay to say ok, be who you need to be to be your best. Be who you need to be to function in this neurotypical world. 

We are forced to conform all the time and it gives us permission to opt out of that what they consider ‘normal behavior.’ and allow us to be who we are in our autistic or fasd mind.

trying to force us to act like an NT can be pretty damaging and all it really does is create a world where we are not able to be our best. the diagnosis allows us to be who we are to be are best. It provides the helps and the ‘excuses’ if I can use that word…to be who we need to be in order to operate in a world that does not cater to people on the spectrum.

It helps teachers and caregivers to know what to have in place so those on the spectrum can be their absolute best.

It helps me know that maybe down the line if I do need to have more helps, that they might be available for me. That is a safety.Forcing us to live outside of those safeties does not allow a great productive environment for us and it actually works against us. We can be amazing workers.We have the ability to make a lot of money and soar in life as long as the right things are in place to allow us to have our sensory breaks, or self-regulate, or not be forced to socialize at the work parties or give a speech that could send us into a meltdown. it gives us the right to be what we need to be to be our best. 

My daughter is going off to school soon and I will not have that help in place that I have had all of her growing up. Just having that safe person with you that you have a great relationship with, regardless of age, adds another brain to the equation when at the store, etc. 

I know I need the helps now that I instinctively had in place. Having a neuropsychologist confirm that for me, I think, allowed me to be okay with that fact. I always felt that I was a bother. Not that I dont now…lol…but I do feel like now its okay for me to ask for the helps.

It’s like i’ve been given that permission slip to have Autism and FASD and it be okay. I will always push myself. I will always force myself to go beyond what I can do. I dont need anyone to stretch me because I am already do that myself every single day. Just going outside and to work and to the store and even going outside of routine is stretching. the only thing others need to do is just have those supports in place when we go outside of our comforts. Just stand there while we go into areas where we are not as comfortable and it provides an immediate safety for us to stretch even more. 

We do know our limits. We do know when someone is asking us to do something beyond what we can do at that moment. Maybe it gives us the permission for others to really listen to what we are saying. I know we dont say it with our mouths necessarily. But our entire bodies are telling you what we want and what we need. 

I know if I can do it. I will put one foot out and I can tell by my own cells in my body if they are going to be able to handle it. Sometimes, just putting the foot out was about all I can handle. Maybe next time, I might accomplish a full step, but just know that most of the time, we are doing all we can to stretch.

I want to be able to be like the others in the room. I want to feel at ease when everyone is socializing. Sure, I’m quiet and I stand back and I dont talk, but that does not mean that I dont have things to say and I dont want those people to talk with me.

A diagnosis maybe helps others to know their roles in our lives. It helps them to know to come to us instead of force us to come to them and make conversation. it allows others to know that large groups are not the best, but we are great one on one.

If someone has a disease, they go to a doctor, they are diagnoses and then a plan is put in place in order to make that person better. 

Better? is that what we are striving for with Autism? with FASD?

Well, yea. I think that we can get…better…in that we can learn how to operate in the NT world one step at a time. We can learn ourselves to the point where we know–and I believe we know instinctively–what we can handle and what we can’t. But what a diagnosis does is allow the people around us to know how to act upon our actions and how to do life with us. 

Don’t walk in front of us trying to force us to go your speed. 

Dont walk behind us trying to pick up after us or watch to make sure we get there.

Just walk with us. Do life with us at our pace. We will get there.

And breathe…

We are fine!

it is you that isn’t.

Because we are not living like others in the neurotypical world, you think we are the ones that are messed up…lol

We aren’t.

The only time we arent is when we are forced to live outside of our comforts. Again, we do know our comforts. We know what we are capable of. We know what we can do and people on the spectrum really are the hardest workers I know. they will do anything to please. We don’t have that neurotypical gene in us that wants to slack…lol…

So know we are giving our all. 100% of who we are all the time.

Different is just that…different.

I heard someone say that we are not disabled we are differently-abled. That’s perfect. We just operate differently. so let us operate the way we do instead of think our way is wrong and that it needs to be like others…just look at it as we are fine. we are just operating where we operate but we will get there. 

Have you heard blind people who were blind at birth say that they operate in this world fine because they have never seen. They have always been this way. it is all they have known. they have instinctively gotten around this world just fine. just different than a seeing person.

That is the way it is for people on the spectrum. We are seeing ourselves around, the way we instinctively need to, in order to do our day.

Maybe this diagnosis allows others to let us do what we need to and not make us conform and BE neurotypical…



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

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.

Embarrassed disappointed sad, BUT determined

The worst thing that could have happened at work, happened. What makes it worse, is that I let myself down and feel that i was not my best. I was put in a situation where I had just a couple minutes to respond to having to speak to a group of people. I will push myself as far as I can, but I do know this lmiitation is HUGE!!! My mouth will go out the window, every time! It takes days, weeks,, even months for me to prepare to talk in front of groups of people. I knew my mouth was shutting down. If anyone knows a shutdown. It is awful! Iti is liek the life is being sucked right out of you. It happens at home, but when it happens in public it is so embarrassing…BUT at work???????


I am the most professional person! I mean, I will work like a marathon runner to get through my day without meltdowns or shutdowns. But when asked to do it, I completely lost my voice. So, I knew all I could do was leave. So I did. Went into the other room and just started to shut down. I think I was more disappointed in myself because I give my ALL so this never happens and it did. One other time, I was asked to speak to the large class and I lost my ability to speak, but it was not detectable by others, really.

I knew I was not going to be able to speak, but when I was asked to…nothing! I had no idea what to do.

It’s not rebellion. If anything, I cried because I was unable to do what I was asked to do and I will do everything I can to do what I am asked. I never want to let people down. I was disappointed in myself and sad that I had let my boss down.

Fortunately, my next period was set up that I was able to bring myself out of it after I sat there for awhile trying to get my mouth to work, etc.

On shutdowns, I have gone to complete limp. Just staring. Just a heap of nothing.

I was able to make myself stay (in myself) as much as I could and fight to come out of it and do the rest of my day.

I’m embarrassed, mostly.

I came home…and cried!! My friend met me at home and just held me while I cried. I fell asleep.

This stuff is exhausting.

I always try so hard to find the best out of every situation.

I guess this would be that I didnt let myself shut down all the way. I came out of it and made myself still have a productive day.

Tomorrow, I go and find out my executive functioning results from the Neuropsych.

I’m nervous. Just the finality of whatever he will say.

no matter what it says, I am still who I am and still the hard working individual who compensates and find ways to make things happen in spite of the disabilities.

Regardless of what it says, I will wake up saturday and be my best.

Make a holiday card for FASD organization



NOFAS is an FASD organization. They are having a holiday card contest.

Check this out. it might be a great way to get your ideas out on a card for FASD.

Hope you win!!


I have disabilities, but I am a person. I have feelings. I deserve respect.

I dropped my test off at my neuropsych yesterday. A secretary was there that I have never met before. I walked in and gave her the test. It was folded. I handed it to her and started to leave. She opened it and just kept looking at my answers. I said, “That is for the doctor.” She looked up and said, “What?”

“I guess I should have put it in an envelope,” I said.

“I’m the one scoring it, anyway,” she said back to me in a disrespectful tone.


She is the secretary for a neuropsychologists. Where is the sensitivity?

I was not told she was the one doing the scoring.

And if she is the one doing the scoring, she could have waited until I left before she opened it up and looked at it…right in front of my face.

I was shocked.

At first, I thought…oh boy, I did it again. I have a mouth. I should have kept my mouth shut.

I some friends and they said absolutely not. that was unethical. Others have told me that I need to say something to the doctor and let him know what she did.

I will. Next week when I go for an appointment about my results.

It’s interesting that my first thought was I wondered what they thought of my reaction. One friend of mine said, “They need to worry about what they did to you and how you feel. You are the client.”


Just because I have disabilities does not mean they do not have to give me respect, confidentiality, inform me of what is going on, and treat me with common courtesy.

I wonder if they treat others like that.


Not cool.

And to add…this is a very hard time for me. I am very sensitive about this. Everything they do and how they handle this is critical.

Really not cool.

From one with FASD to parents raising ones with FASD

ImageToday is FASD Awareness Day. Ninth month. Ninth day! All we ask is go nine months without drinking while pregnant. A friend of mine…like a brother to me…wrote an answer to a post yesterday on Flying with Broken Wings, a site for those with FASD. I asked him if I could repost it on there. He said YES! So R.J. Rormanek…Here is it. I so appreciate you in so many ways. R.J. lives with FASD and is a survivor!

Here he is…talking about living with FASD to someone who has kids with FASD

We are often victims of our own concrete thinking processes, and that might start to explain what they are going through. As you have noted major changes to them have come to symbolize loss (of people, by the sounds of things) and they have come to expect that everyone will leave them. In my own way I too can understand this feeling… I don’t know how common it is with others living with FASD but in my own mind I always know that people will go. I can’t shake that one, I’m afraid… but that IS a part of life and learning to cope with that is very difficult when you don’t fully understand. It has taken me years to learn to accept that while (my brain) doesn’t change like others, they change and move on while I remain the same. I’ve actually taken to calling myself a ‘time traveler’ as in… no matter what year it is I am always the person I was in 1978. I’m not stuck in that time, and I do LEARN things … but my personality has not developed past a certain age. This is the self that speaks to me… a teen age kid. THAT takes some getting used to.

FASD and sexuality? Oh now there is one nasty mix, let me tell you. You see, while Mother Nature did indeed play a terrible trick on us. A few of them. While our brains have issues that we are all aware of our bodies grown like anyone else in a purely physical sense. We are often “cute”… many of the facial characteristics of FASD are found to be attractive to the opposite sex. I don’t know why. But very often we are good looking… and often we don’t age the same either… but that’s a whole other story.
Maybe it’s because we are living closer to our “animal or reptile” brain (the base brain… the one that regulates emotion, impulse control, fight or flight type thing…NOT the “thinking” part of the brain) and THAT can cause us to want to… propagate the species as it were. We can easily relate to the physical feelings of sex and often we have problems in this area with judgement… saying ‘no’, setting limits etc. It doesn’t help that many of us can talk like there’s no problem, making finding a partner not too difficult. If we don’t find a good positive relationship to help us grow and understand sexuality then we are faced with some very scary prospects to be sure.
BUT it doesn’t all have to be this way… and meeting good people can make a huge difference. Knowing that someone cares for US, not just our bodies can make a huge difference… but often we need to learn that sex and love can and often are two different things. Having someone we can talk to is vital… an External Brain.

As we go through life we meet and enlist the help of any of a number of external brains, from parents and caregivers to friends and lovers. While the parents can’t be there always they CAN help enlist people to act as ‘fill in’ external brains while needed. As long as they have that one person (each I would assume) they have someone to “touch base” when faced with new and confusing situations. The people we hang around with can be our life line… or our anchor. If we have good solid people around us we can do amazing things, so I would suggest helping them find someone THEY feel comfortable with who can be that ‘fill in’ person when they need someone.
Adults living with FASD still need External Brains… not to tell them what to do, but to be there and explain “WHY?” to us… since this is often the thing we don’t understand about anything…WHY?
My External Brain is often my moral compass… if I see someone do something and I’m not sure I can ask “was that right? or wrong?” and get the explanation. Sometimes it’s just having a person there to tell us “yes… that’s right or not that’s not right”… just as validation.

I have been on my own since I was15, and I would guess that was mainly because of the FASD and have seen the best and the worst in people. I have a whole lot of great stories to tell… but no parent would want their child to go through what I, and so many others like myself have gone through.

The girls have reached the age where they need to fly, and that is a very important time in their lives, Mother Nature does NOT listen to reason. Now is the time all the lessons you taught them will have to serve them, to take them into the future. Being THERE for them is paramount… but you also (as you pointed out) need for them to learn that you are still there too. I would say finding them, or helping them find a friend who can assume the role of External Brain would be the best thing you can do for them at this point in their lives. Someone to trust.

I feel this is the best thing you can do for them, and yourself… we do grow and become adults and it’s through the help and assistance of people who care we can find our own limits and talents. What you taught them at home for all those years is not lost, and they are still the girls you know and love. As long as you remember that, and respect the fact they are growing up they will understand that they can still turn to you.

Sorry to run so long, but this is important and I hope I can help you to help them. I can only speak of my own experiences of course, and they may be totally different … the change into adulthood is not always easy, but it’s going to happen. That’s Nature again. Love, trust and talk to each other…OFTEN.

“The Universe will unfold as it will”… just being there helps.