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Hi. I'm new here.


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Joined: Jul 26, 2008
Posts: 9
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Posted Jul 26, 2008 at 11:11:50 PM
Subject: Hi. I'm new here.

I'm 17 (18 in a few days). I'm multiply disabled. I was born at 25 1/2 weeks, 1 lb 8 oz, 12 inches long. They thought I wouldn't survive, but I did. I had a 97% chance of blood on the brain, but I didn't have any blood on the brain.

I am a diagnosed dysgraphic with ADD, Underdeveloped Muscles, Low Muscle Tone (almost hypotonia), amblopyia and monocular esotropia of the left eye, balance problems (most of my major balance problems were corrected through OT), 20/50 vision in the right eye, 20/200 in the left eye, and probably a few other things that I am forgetting.

Recently I started to go to an OT Driving Clinic and they didn't know what Dysgraphia was. They didn't even have it in their computer systems. They said I might need low effort steering.

In high school (i just graduated recently), I used a laptop computer after using the awful contraption known as the Alphasmart. The Alphasmart wasn't very good. The school even tried to get me to use the Dana, when they knew I couldn't hold the stylus correctly, and my depth perception is not perfect, so I couldn't hit the screen with full accuracy.

Then in High School, I probably had the most incompetant IEP Case Manager in the world. She never performed a single psychological or educational evaluation unless my parents demanded it. Anyone else have a similar experience?

P.S. Sorry for all the text, just wanted to talk a little :)

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Mandi
Joined May 05, 2008
Posts: 424

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Posted:Jul 27, 2008 2:52:15 PM

Knock yourself out! This is what this place is here for i think anyway. We all as people with disabilities go through 'stuff'. I am so glad you are still here to talk a little! I am sure you will have alot to add to the discussion as you have clearly overcome quite alot. I hope i get the opportunity to learn a bit from you.

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bros
Joined Jul 26, 2008
Posts: 9

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Posted:Jul 27, 2008 5:22:04 PM

If you have any questions, feel free to ask. :)

I basically have my massive medical history memorized. My memory is decent. I took the WAIS recently, scored in the 70th percentile for memory. Got a 125 on Verbal IQ and 89 on Performance IQ. I've been diagnosed as dysgraphic since around age 6. I was diagnosed with the motor difficulties shortly after birth

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rottiedog
Joined Jul 27, 2008
Posts: 7

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Posted:Jul 27, 2008 9:15:31 PM

I'm jealous. Graduated at 16? Especially with all that stuff you listed? Congratulations! (I'm still jealous). I know how you feel about people who are supposed to be knowlegable about disability stuff not knowing the basics. Dysgraphia is like dyslexia in my book. Should be a common enough term. Yet, they seem to treat you like you're from outer space because they not only don't understand it but have never heard of it. Yikes!
Don't worry about writing too much. You are an inspiration to many people (me included) and I'm sorry I can't help you other than to be able to say that I can feel your frustration. After all, disability advocates are supposed to advocate for you, right? I can tell you that they often do not.
It's good that you have parents who will yell and scream for you. You will go very far in life despite society's apathy. I have learned, through many years of experience, that self-advocacy is the key. The pride of making your own way despite what others don't understand about you is immesurable. Hang in there!!
Sincerely,

Rottiedog

I think I can, I think I can, I think I can . . .

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bros
Joined Jul 26, 2008
Posts: 9

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Posted:Jul 27, 2008 10:01:09 PM

Quote rottiedog:

I'm jealous. Graduated at 16? Especially with all that stuff you listed? Congratulations! (I'm still jealous). I know how you feel about people who are supposed to be knowlegable about disability stuff not knowing the basics. Dysgraphia is like dyslexia in my book. Should be a common enough term. Yet, they seem to treat you like you're from outer space because they not only don't understand it but have never heard of it. Yikes!
Don't worry about writing too much. You are an inspiration to many people (me included) and I'm sorry I can't help you other than to be able to say that I can feel your frustration. After all, disability advocates are supposed to advocate for you, right? I can tell you that they often do not.
It's good that you have parents who will yell and scream for you. You will go very far in life despite society's apathy. I have learned, through many years of experience, that self-advocacy is the key. The pride of making your own way despite what others don't understand about you is immesurable. Hang in there!!
Sincerely,

Quote rottiedog:

Rottiedog

Graduted at 17, not 16 :)

The doctors ask if it is similar to dyslexia. Then they wonder why it doesn't affect my ability to type on a computer rather proficiently (I have pretty severe dysgraphia I think.). Although my typign skills might be attributed to my parents insistence of my using a computer at a young age.

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rottiedog
Joined Jul 27, 2008
Posts: 7

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Posted:Jul 27, 2008 10:37:35 PM

Ha! Yes, you graduated at 17. Just shows you how well I can count. Funny. Whether or not you graduated at 16 or 17 is irrelevant. Fact is, you're smart and very capable. Now, why would the doctors ask such a question? I'm not the sharpest tool in the shed (obviously) but even I know the basic difference. Now don't quote me because I'm not a professional but to my knowledge, dysgraphia involves the inability to physically form letters on paper with a writing utensil. It has little to do with letter reversal. Perhaps this is due to your low muscle tone? Maybe to your visual perceptual deficits? I also have 20/60 in my right eye and 20/200 in my left. Couldn't catch a ball if my life depended on it. But, if I close one eye I can target shoot my .45 caliber handgun with the best of them. My typing's not bad either. It's good enough that I worked at a relay center for the deaf for awhile and the minimum to get hired is 60 wpm. You don't necessarily type visually but by touch. Makes sense to me. So, I don't know if this helps or not. Hope it does a little.

Rottiedog

I think I can, I think I can, I think I can . . .

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bros
Joined Jul 26, 2008
Posts: 9

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Posted:Jul 27, 2008 10:49:20 PM

Quote rottiedog:

Ha! Yes, you graduated at 17. Just shows you how well I can count. Funny. Whether or not you graduated at 16 or 17 is irrelevant. Fact is, you're smart and very capable. Now, why would the doctors ask such a question? I'm not the sharpest tool in the shed (obviously) but even I know the basic difference. Now don't quote me because I'm not a professional but to my knowledge, dysgraphia involves the inability to physically form letters on paper with a writing utensil. It has little to do with letter reversal. Perhaps this is due to your low muscle tone? Maybe to your visual perceptual deficits? I also have 20/60 in my right eye and 20/200 in my left. Couldn't catch a ball if my life depended on it. But, if I close one eye I can target shoot my .45 caliber handgun with the best of them. My typing's not bad either. It's good enough that I worked at a relay center for the deaf for awhile and the minimum to get hired is 60 wpm. You don't necessarily type visually but by touch. Makes sense to me. So, I don't know if this helps or not. Hope it does a little.

Quote rottiedog:

Rottiedog

I think the therapist has never encountered a person with dysgraphia in his 15 years of being an OT. He also suggested I should get OT again, which I might. It could help. It was stopped when I was 8, they told me that they could not help me any more after that. Dysgraphia basically impairs the motor function neurologically, and sometimes the signals my brain sends doesn't get to my hands, or it gets there delayed. I can touch type at around 85 WPM. Who knows, the doc might have asked because of my unique combination of disorders.

I mean it is logical for the Pediatric Cardiac Electrophysiologist to ask, but it is a little odd for an Occupational Therapist to ask. But not really that odd, because he mostly works with people who have had strokes, or people with bad vision.

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rottiedog
Joined Jul 27, 2008
Posts: 7

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Posted:Jul 28, 2008 12:38:45 AM

Sounds like we're on the same page. I'm glad we understand each other and am still saddened by your supplemental health care providers but am not suprised. My sister is a PT/OT and probably has never heard of dysgraphia. Obviously, it doesn't affect keyboarding so I'd say that that is the way to go.
I may not log on for awhile as I am smack in the middle of summer school but I'll check periodically.

Rottiedog

I think I can, I think I can, I think I can . . .

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bros
Joined Jul 26, 2008
Posts: 9

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Posted:Jul 28, 2008 12:47:44 AM

Quote rottiedog:

Sounds like we're on the same page. I'm glad we understand each other and am still saddened by your supplemental health care providers but am not suprised. My sister is a PT/OT and probably has never heard of dysgraphia. Obviously, it doesn't affect keyboarding so I'd say that that is the way to go.
I may not log on for awhile as I am smack in the middle of summer school but I'll check periodically.

Quote rottiedog:

Rottiedog

Eh, he's a doctor referred to me/my parents by my Neurologist (one of the best in the state). The guy isn't bad, he just wanted to know what dysgraphia was. He had an idea, but he just wanted my version of it.

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Mandi
Joined May 05, 2008
Posts: 424

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Posted:Jul 29, 2008 1:13:05 AM

I don't tend to talk about it.... But my IQ is actually over 160. It doesn't mean much aside from that the person giving the test had about as much intelligence as our current president. Which is more or less equal to that of my aunt and uncle's clinically retarded cocker spaniel. I think someone must have messed up the math... But i am atleast certain that i was not involved in that sort of a math mistake however, i am sure had i been crunching the numbers the mistake woud have been far larger. Some of my scores were much higher than that. (So they said scuse me while i roll my eyes.) over 160 being dragged down significantly by some scores and raised by others and ultimately averaged out....

I thought school was a waste of time. I also thought cutting classes was more interesting than attending. I still think it needs a serious overhaul of the system and an entire remake from scratch.

I am glad youa re the sort who doesn't mind sharing. Many here overcome a huge amount. We all have something to teach eachother. I hope to see more of us learning from eachother in the future.

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bros
Joined Jul 26, 2008
Posts: 9

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Posted:Jul 29, 2008 2:07:13 AM

Quote Mandi:

I don't tend to talk about it.... But my IQ is actually over 160. It doesn't mean much aside from that the person giving the test had about as much intelligence as our current president. Which is more or less equal to that of my aunt and uncle's clinically retarded cocker spaniel. I think someone must have messed up the math... But i am atleast certain that i was not involved in that sort of a math mistake however, i am sure had i been crunching the numbers the mistake woud have been far larger. Some of my scores were much higher than that. (So they said scuse me while i roll my eyes.) over 160 being dragged down significantly by some scores and raised by others and ultimately averaged out....

Quote Mandi:

I thought school was a waste of time. I also thought cutting classes was more interesting than attending. I still think it needs a serious overhaul of the system and an entire remake from scratch.

Quote Mandi:

I am glad youa re the sort who doesn't mind sharing. Many here overcome a huge amount. We all have something to teach eachother. I hope to see more of us learning from eachother in the future.

Public School was quite the waste of time.

They should let you choose what kind of classes you want to do. Like have freshman and sophomore year of highschool be packed with learning. Then have Junior and Senior year be packed with what you want to do as an adult. Not the same routine over and over until graduation. And Schools don't even really CARE about the disabled.

They wouldn't pay for my laptop, which was proven that I needed by my pediatric neurologist (one of the best in the state, and hired by a lot of school districts to perform evaluations) and pediatrician. So my parents were forced to buy one for me. The school refused to reimburse my parents. Even though they have laptops in a storage facility for disabled students, they refuse to give them out, instead they push the "better" AlphaSmart and Dana, and refuse anything else unless the parent pays for it.

The school also tried to refuse to give me a psychological evaluation before leaving, even though it was over 2 years since the previous evaluation. Then we pointed out some parts in some laws, and they shut up.

When we recently got all of my records from the Special Services department, I saw that a few of my case managers said that my parents refused an evaluation, when they were never even told about one. Damn case managers not wanting to schedule an appointment for a student with the district psychologist.

The only times I had an evaluation were:
1993
1994
1995
1996
1997
2006
2008

They believed that was adequate. Which was rather false. The head of special services for my school district got in trouble with the state DoE for their actions with me, and multiple other handicapped students. They basically told the school to perform evaluations or funding would be cut.

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bros
Joined Jul 26, 2008
Posts: 9

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Posted:Jul 29, 2008 10:38:56 PM

Now I have to gather all of my records for any doctor or hospital or school that has dealt with my disability.

I need it for the state Department of Vocational Rehabilitation

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bros
Joined Jul 26, 2008
Posts: 9

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Posted:Jul 30, 2008 2:02:25 AM

Gathering records is fun.

At least I have every single record from the child study team

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spedie
Joined Jul 20, 2006
Posts: 15

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Posted:Oct 11, 2008 10:56:13 PM

The federal laws says every 4 years for testing if needed. Psych. testing does not change that much so every year is not need and not best do to test often. A psy. cost about $500 and Educatioal and the same. Why would you do this so often. Every 4 yrs is good and sometimes not even need even on the 4th year. All test show is that one still has a disability often that is already know.

Special ed in more ways then one.

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