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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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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???????

Never!!!

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.

http://www.nofas.org/2013/10/31/design-nofas-holiday-card/

Hope you win!!

Really?

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.

Really?

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.”

True.

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.

Hmmm.

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.

Executive functioning test

When a doctor told me I had all the markers for FASD, it was a hard one for me to accept. I have always been the type of person that has been determined regardless of circumstances or disability. I know I have one. I really didn’t need anyone to tell me. When i was five years old, my kindergarten teacher told my adopted parents that I had to go to a neurologist. There were already concerns. I had been a failure to thrive baby. I did not really talk. I was, very much, a late talker and I didn’t connect the way a lot of other kids did. I saw things differently. I didnt have a lot of the eye hand coordination and I didn’t have spatial sense. I still dont…lol. When the neurologists said that I had significant brain damage and I would not graduate high school, they did not factor in my determination. Have you ever been the type of person, that everything you do, people look at you in this surprised look like WOW, I never knew you could get a masters. I never saw you as a mom. I never saw you being able to do _______________. Well, most of the time, I surprise people because they only see the disability.

My boss would say, she knew I could do it. She actually is a special ed teacher for kids on the Autism Spectrum. I always knew it was a possibility that I had that, too. I was told by one neurologist as an adult that it was most likely Autism, but he dismissed it to look at other things that were not important. I did not even go back to him to find out what he wanted to do. He was disrespectful and I was not impressed with him.

Safeties need to be in place in order for me to accept someone testing me for disabilities. Now, that was there when I was to a genetics doctor at Akron Children’s who said that the FASD was there.

Now, two years later, I decided to go to another neurologist. Some of our kids, from the school, had gone to him and he is able to diagnose autism. I went and it was pretty much 100%. As my boss and best friend says it, about 110%. When I was there about a month ago, we discussed the more cognitive issues that could be related to FASD…besides just the Autism.

Executive functioning can be in both FASD and Autism. I didnt even know really what Executive functioning was. I didn’t know what it was when I went for more testing last Friday. I sat in his office for three hours. He timed me for just about every task I did and I realized that I am a pretty slow processor and I do not have a very good memory…lol. He started off the tests with tasks like reading 20 words to me and I had to say them back. I could only say like the first three or last three because I was not able to remember the rest. He read them again. I maybe remembered one or two more. We did it again a couple more times. He then put them into categories. I could remember the ones I already remembered. But not any more. then he listed them back to me asking if any of them were on the list I may have forgotten. There were a couple that were a maybe, but for the most part…not so much.

He had me say words that started with the letter A and I had a minute. I have to be able to hear something or look at something in order for me to bring it out of my brain. I cant bring it from nothing. So, these were my words…a, an, am, and, animal,….he said ‘keep going’ i saw a book on his desk with the word administration on it, so I said that word. But that was it. He then said ‘ok now words with the letter ‘f’…go.’   First thing out of my mouth was, ‘can I swear.?’ He said yes. But I couldnt say it. But I said words like…fun, freak, fork. that might be it. He said ‘keep going,’ but nothing.

He told me to say animals and I could do that a little better cuz I love animals and actually love to take pictures of them and it is a passion of mine so I had that more imprinted on my brain. I probably listed at least 10.

He read word problems to me….um….he lost me at the first word. He could repeat it once, but other than that, I had to solve it….I did not do well on this. I was not able to process what he said. Words blended into numbers very quickly and within seconds, all I heard was blah, blah, blah. I just passed on most of those.

He had me do patterns. I realized that I could do the patterns, (I think–dont know results yet) that were on top of each other, like 2 blocks on 2 blocks. easy to see.. but the patterns that were in a long series, i could not retain from beginning to end to get the pattern. it was way too hard and I’m normally good at patterns.

SPELLING. Hey, I’m good at that. I’m a writer. I was a journalist for many years. I think I did great at that! All the writing I have done has imprinted words on my mind that I really am good at spelling.

Patterns on the computer. Not only does it say incorrect on the screen, it makes a noise that lets you know that you really dont get it. i got most of them wrong…lol…So, I heard that noise reminding me that I got it wrong about a hundred times.

I actually looked up executive functioning because I had no idea what it was. I guess you can have a high IQ but still not be able to know how to use it. There are people who have a lot of degrees but dont have a job because their executive functioning is so low. Mine is pretty low, but I have always made sure I had the supports around me in order to watch or figure out what to do. I do the things I do. There are a lot of things I really do not know what to do. If you tell me step by step or if I watch you carefully or you visually show me, I can figure it out.

We will find out the results, next Friday.

I will let you know. Image

Proud but exhausted–not giving up

I’m proud, but I’m tired.

I work hard. I love hard. I play hard. 

I’m exhausted!

Those of us with FASD give out a lot more energy to do what others do and I have been non-stop. That’s a good thing in one sense. It does prove that we can do it. I work as a teacher/assistant director at a school for kids with Autism and I also am a photographer for kids with cancer. I also am trying to get my photography business going and have many things to make this happen. I have put soooo much energy into all 3 and I honestly dont have an inch of energy left. I rely so much on others around me to get these done and then out of nowhere my main external brain is removed from me for a short time, but nevertheless, when I’m tired…this makes it even harder!! 

I tried to go to Columbus yesterday without her and again, I just couldnt get myself to travel that far and do what I needed to do for my gallery. I went out with my daughter because I am the type of person that I will not give up. I was going to tackle something on the list. She needed to get some things. I did too…lol…She was the only successful one on this outing. 

I’m tired. After being out for a couple of hours I thought I’d run a marathon. I couldnt go any further. 

I’m not giving up. I think that is why I am so tired. 

I am actually trying everything I can to get my photography business up and running and it fuels me. I want to go into architectural photography. If any one knows of someone who needs a architectural photographer. I have the gifts. I see the right angles and how the photo should be taken. I seem to be able to get the lighting right and able to capture what they want. I’m very good at it. I work way too hard and put so much energy forth for barely being able to make it.

But I’m not giving up.

I’m tired. 

But I’m not quitting.

I’m going to keep going until I can’t take another step. 

As long as I have even an inch of energy I’m going to keep going. 

Photography has always been a place where I feel comfortable. I enter most new places with my camera and I interact with people behind the camera. if I don’t have it…lol…I feel naked. It is my way of getting to know people.

I do event photography. I do landscape photography. i do architecture. 

Get the word out for someone who wants to do this. 

I may have FASD…but I’m not quitting.

Exhausted or not. I’m going to be the best Ann I can be.

If you have FASD…don’t quit. Find your passion and go with it!

My Etsy photo shop…https://www.etsy.com/shop/annkagarise

My photography website http://annkagarisephotography.redframe.com/

My viewbug. this is actually the best website of my photos http://www.viewbug.com/member/annied

I have a gallery of my art in Tuttle Crossing Mall in Simply Vague store. I have a full wall way in the back in Columbus Ohio.Imageore

Contact me at kagarise.ideahouse@gmail.com or leave a message on here. or contact me at swmr152974@sbcglobal.net if anyone is interested in a photographer. If anyone needs a architectural photographer. 

I have included one of my photos.

Thank you!

 

 

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.