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Archive for September, 2013

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.

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Laugh or cry

ImageI started off thinking of the Chronicles of Ann or a real life Amelia Bedlia just to crack fun of myself. Really? It comes down to any time I venture outside of my normal in a world that is protected or done FOR me or an external brain WITH me then this is the day I have. For all those who think their FASD person is faking when they are unable to do simple things or do not believe when everything in their world really does not work out just in the simplest of tasks…it really DOES NOT! And it has nothing to do at all with giving your ALL.

Because I give my all…and then some.

I have Friday’s off from work. First of all, I would rather work just to have my normal routine. Secondly, that means I either work on things I know and feel comfortable with…inside my world of safeties or I venture out…with someone I trust.

Today I tried to venture…with my daughter as my external brain, but I don’t think she was paying attn too much this day…lol…

It started off with going to get shoes. I really wanted a pair of converse shoes. So, we go in…me to my converse’s…my daughter to her high heels…lol…and I am pulling off a box of shoes…the ones in my size…and of course they are on the bottom of a stack of shoes that is on the top shelf. I try to wiggle it out. I keep pulling it out and pushing the ones on top of it, back. I am very careful. I decide I could pull it out all the way, the ones on top fall back on the boxes behind it and they all fall on top of a woman on the other side of the shelf. Fortunately, I guess she got out of the way, but i heard her make a noise…lol. And this woman who was standing at the end of my aisle and could see her said oh my you just dropped those boxes on her. The manager comes on my side and says if you need help getting a size down, you can ask for help. He goes on to ‘train me’ on how to get a shoe box out of the shelves. I didn’t know I needed to be taught how to shoe shop upon entering…but I did. So I decided I had done enough damage in that area and decide to go over to another part of the store. I take my shoe off and try a shoe on. Well, that time the sign was connected to the shoe I chose to try on and it about knocked everything over while i tried to get the sign off of it. I try on the shoe and there was no mirror. So I venture over to the mirror about 2 aisles over. Upon returning to my shoe, this woman has it in her hand and shes walking around with it trying to see where it goes. I follow her and she puts MY shoe on a shelf. She sees me take it off and put it back on my foot and she says…”Oh? That was your shoe?” I said to my daughter lets just go. Oh…I did get the converse shoe.

Then we go to a coffee shop to hang for a few. They put out free coffee for the testing. I go over to it and get a cup. Chocolate Fudge. I push every button on the carafe that was on the table. I lifted the lever, I did everything possible trying to get it to pour me a cup of coffee. I go over to my daughter after I realized I’m not the only one there and notice others could see that I had no clue how to pour my own self a cup of coffee. My daughter goes right over and in one second pours me a cup of coffee. I felt an inch big…but the coffee was good.

After a long day of all the tough realizations of my disability staring me in the face…I come home, eat, and then go back out becasue I saw a sign that said Menchie’s. And I wanted yogurt. I walk in and they were having a training for the entire store. I didnt notice that outside it said Menchie’s coming soon. I said are you open? They all looked at me and said NO! We are not open yet.

At this point, I just decide to laugh all this off and go to Dairy Queen because i still want my ice cream. I go through the drive thru, and by it is a place where is like a parking spot for an employee to park right before the drive thru. Yep! I go behind that and wait for the car to move. I waited and waited. Nope…not a drive thru! A parked car. So, I finally went to the drive thru and ordered.

I then come home and wanted to play the DS games that I got. Some people are very good at video games…even people with FASD. I am not able to figure one of them out. not one. But I get determined because i want to play. Neurologically, I’m just not able to do it…I can do Mario Kart. But other than that, just too difficult. So, I tried game after game and finally just put them away. i wanted to try this because yesterday when I was at work (I work with kids who have Autism), I gave them a video game called Virtual City. When I had to try to learn to play it in case they had questions, it took me 2 hours to figure out the first level. It took them a half hour to get thru 7 levels. I knew then that my neurological disabilities are pretty significant. I already knew, but it kind of stares you in the face and anyway…I wanted to prove to myself that I could do it!

Well…I am unable.

Laugh or cry?

I think a little of both.

Dear Teacher…I have FASD

Dear Teacher,
I have FASD. I have a hard time hearing everything you say. I try, but sometimes I just don’t understand. It’s hard for me to understand the directions you say. Lot’s of times I forget as soon as you say what I’m supposed to do. I look at others, not cuz I want to cheat, but cuz I want to know what I’m supposed to do next. I know it seems like I’m not paying attention, but I just don’t understand.

I’m not lazy. It seems like I dont want to do my work, but I do. I’m just not sure how to do it. If you tell me exactly what I’m supposed to do a couple of times, I might understand better. You might have to explain it to me with no one else around.

My senses are really sensitive. Sometimes I need breaks from the classroom. Sometimes, I need my own time out from the chaos in the room. It’s hard for me to process all that goes on.

FASD is fetal alcohol syndrome. It just means that my mom drank when I was in her belly. It doesnt mean I’m less than the other kids in the class. I am still very creative and very fun. I love to learn and I love to work. I will always give you my best. I promise and I keep my promises.

FASD means that my brain is not like the other kids. It is wired a little differently and I have to find my way of learning. I have to learn how to learn. Work with me cuz I’m trying to figure out what works for me. If you do it with me and stay patient with me I won’t get as frustrated. Let me know how proud you are of me that I’m working so hard even if I don’t understand and constantly focus on what I’m doing right. Oh, you can tell me what I’m doing wrong or what I’m not understanding, but remind me that I’m still a great kid even if I did something wrong.

See, I’m extra sensitive. My brain just has a hard time understanding so I get so confused with what you are saying or what you are expecting that the harder I try, sometimes my brain just shuts off. And if you get frustrated with me, I think I’m doing something wrong when I’m really trying to give you my best. Do you know what it feels like when people are upset with you and you don’t understand why? You are doing everything you think they want you to do but you are still doing it wrong?

I cry a lot inside. I want to be my best for you and for my parents. I want everyone to be proud of me.

It’s okay to make me an IEP. Call FAS what it is. It only hurts me if you don’t. If I get the right diagnosis, then I get the right helps.

It’s okay that I have this thing called FASD. I can’t change it. It is what it is. Just please don’t make me feel different. Don’t make me feel like what my mom did was so wrong that I feel bad about who I am. Don’t make her actions be who I am.

Thank you,

Your student

this is me as a kid…pretty cute huh?…lol

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It’s September

This is the time to get the word out about Fetal Alcohol Syndrome and what it is really about. This is the time to become informed about drinking while pregnant. Even one drink is wrong. This is the time drinking to learn more about breast feeding while drinking. The alcohol goes into the milk and into your baby. The brain is developing. If you want to drink, don’t breastfeed. There are more people than you realize who have FASD. Look it up. Research it. Talk with someone who has it. Don’t put a stigma on it. It is no different than any other brain defect. It is a neurological disorder just like Autism. In fact, many of us have the exact same symptoms as autism. Talk to educators about this. Make them face this thing when others want to look the other way. Get this on IEP’s so our youngsters with FASD can get the proper helps instead of call it something that is socially acceptable. There is nothing wrong with us just because we were exposed to alcohol in utero. We have hopes, dreams, aspirations, and we are successful. Our brain operates differently because it was damaged before we were even born, but we make it. We have been given tools to compensate for where we lack. We are creative so we can find ways to get to the place you are. We might not be able to verbally communicate like you, but we find other ways to communicate. We might not learn like you, but we are determined enough to find a way to learn. We have a hear that goes beyond understanding. We hurt for you. We love deeply. We feel more than you could ever know. We love! We have passions that need to be encouraged. We need to be guided. Down time is not good for us. We either get into trouble or we shut down because we are lost and have no way to figure out how to manage our time. But we will be able to do life if you do it with us. Put your arms around us and ask us how you can help us. Do it with us. Don’t do it for us. We can do it. We just need to look at our external brains around us to make sure we are doing ok. We just need to know if we are going in the right direction. Sometimes, we just need a smile. 

Do me a favor…just tell one person this month about FASD. Just one. We will be that much further head. 

Thank you!Image