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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

Great article on FAS!!

This was posted on FASlink so I thought I would post it on here. Very informative and from what I know about FAS, personally, and from the research I have done, this is very well written and accurate. So many people do not understand FAS. I just had to put this on here for others to read. 


The term Fetal Alcohol Spectrum Disorder [FASD] embraces Fetal
Alcohol Syndrome [FAS], Partial Fetal Alcohol Syndrome and Alcohol
Related Neurodevelopmental Disorder [ARND].
The absence of the FAS facial features does not exclude the diagnosis of
brain damage from prenatal exposure to alcohol. Only 10% of those
afflicted will have the facial features. Only 15% will have an IQ below 70.
85% will have a normal range IQ or higher than average IQ. However, all
those afflicted with FASD have a low Adaptive Quotient as measured by
tests such as the Vineland Adaptive Behavior Scales.
Those afflicted with FASD demonstrate primary and secondary disabilities
to varying degrees depending on the quantity of alcohol taken, the
manner it is drunk eg binge drinking, the time in the pregnancy and the
health and nutrition of the mother.
Primary disabilities are the inevitable consequences of prenatal exposure
to alcohol.
-Impaired spacial learning
-confabulation – often interpreted as lying
-attention disorders, easily distracted and perseveration –
perseveration/transition problems
-sensory problems- self mutilation
-impaired executive functioning i.e forming, planning and achieving goal
directed task
-learning disabilities
-low I.Q. [15% only ]]
-comorbid psychiatric illnesses [previously considered to be a secondary
disability]
-memory problems, short term memory for verbal and visual recall. [
when the verbal processing is good and visual poor it is known as a nonverbal
learning disability ]
These primary disabilities lead –
-to difficulty communicating-giving and receiving information
-takes everything literally – concrete thinking
-problems with planning and organizing
-impulsiveness, poor judgment, easily lead
-failure to learn from experience
-difficulty with abstractions, idioms, humor, sarcasm
-difficulty relating cause and effect, anticipating consequences
-difficulty appreciating others point of view
-problems expressing remorse or taking responsibility for behavior –
frustration.
-bowel and micturition control problems
FASD is not just a central nervous condition. It also effects the peripheral
nervous system. Those afflicted with FASD have sensory abnormalities.
They may be over sensitive or under sensitive. Under sensory means
that they are less sensitive to external stimuli. They are less sensitive to
cold or physical pain. They have a need for sensory stimulation resulting
in inappropriate hugging and touching. Repetitive scratching, pulling hair
out, and more severe kinds of self mutilation [often interpreted as OCD
or attention seeking] provides comfort, especially in times of stress, that
others obtain from more normal sensory stimulation.
It is my observation that those with FASD exist in two states, 1 -a mind of chaotic,
uncontrolled and uncomfortable thoughts, usually described as being bored. and 2- a mind
perseverating [ super focussed ], with or without physical activity.
They seek the second to escape the first.
What they perseverate on is determined by their particular set of cognitive, emotional,
information processing, memory, expressive and sensory disabilities; as well as their early
childhood experience and their immediate environment, including how others relate to them.
What they may perseverate on to soothe themselves extends from cutting, provoking
others, to more acceptable behaviors, such as playing video games, reading and sports.
Alcohol and hard drugs are used to obliterate the 1st state of mind. Those with FASD can
often stop using them providing they have an alternative focus of perseveration.
This is not true of Marijuana and Tobacco, which generally appear to have a specific action
that reduces their multiple chaotic thoughts and allows them to focus on one process.
The ?medicinal? use of pot is lost if it is used to excess, in which case it assumes the harmful
role of other street drugs.
Barry Stanley
May, 2009.

The best dad for someone with fasd

Yesterday was my dad’s birthday. He died when he was 55. That was over 30 years ago now. I just realized how much more living he had to do. My dad, was one to meet me where I was. Neither of us talked much. We would sit on the couch together and just be silent. I would trace his tattoos on his arm and play with his ring. He was special to me. He was my world.

Having FASD makes your world so confusing, but we find places and people that can be calming. We find solace in things that others do not understand. when you live in a world of such confusion, it is such a breath from fresh air when you have someone who just gets you. Just for who you are and does not expect you to be different.

Swimming was what got me through some of my tough times. I had this energy that would not quit and i was ADHD and everything else…lol. My dad would be waiting for me at the end of the blocks when i would get done with an event. His smile said everything to me. He didnt have to speak a word. I knew he was proud.

When he found out that my disabilities were permanent and significant, he made me a chalk board and an entire basement for my eyes exercises and balancing problems. He made me a balance beam so I could practice. With the chalk board, he had me take 2 pieces of chalk and make them meet in the middle to make my eyes work together.

He never, again, had to say a word. He did it with me. He loved me. He cared. He wanted me to be my best, but he never made me feel less than for having these disabiliies. He knew I did not understand the way other kids did. I was only 11 when he died. but he spoke my language.

He just loved me where I was for who I was. I always felt accomplished even though I was so much lower in abilities than others. He focused on my strengths and would just shoot me that smile and the whole world was okay.

I couldn’t read like others. In fact, I couldnt read a book until I was older. Much older. All the words blended together. Each line seemed like one long word. I did not see separations.

I could not write like other kids. I never saw the whole page and I would cut about an inch of the line I was supposed to cut. My brain was just different. He was my adopted dad. He made me feel ok even though the world made me feel bad.

He was the best man in the world. I could look at him and just know that I was important. I had worth.

He died when I was 11, like I said. My world was never the same since.

It’s okay.

I know when he died, that I was his angel.

In a world where all you do is struggle, we are constantly looking for places that we fit.

Him and me…we fit.