Please follow the link and read the petition regarding tax breaks for families with special needs children, and sign if you support the idea. Pass it along to anyone you think might be interested, whether they have special needs children or not.
http://www.petitiononline.com/txbrk456/petition.html
Thank you.
Sunday, April 27, 2008
Friday, April 25, 2008
Live With It
I've been MIA for a while now. Part of the reason is that the school is hassling me. (I'll save that for another post.) The other reason is that my arthritis is giving me grief.
Some of you know that I have arthritis in my knees, and that I have had knee surgery. I've been told I will be a candidate for replacement on my knees, but because of my YOUNG age (I love saying that), they will do arthoscopic surgery several times before they go the replacement route. It seems you can only have a limited number of knee replacements in your lifetime, and the replacements only last a limited numnber of years, so they don't want to do the surgery on someone so YOUNG (bear with me, this is fun!), so they go the "scope" route first. I sometimes walk with a cane when the pain acts up, or when the ground is icy (it makes me feel more stable). But I do find that the surgery I had a few years ago was like turning back the clock ten years.
I've had other arthritis pain, too. I have gout, which is the most common form of arthritis, and usually affects your toes or feet. I've got arthritis or tendonitis in my hands, feet, back, elbow and shoulder.
Lately my shoulder has been really giving me grief. It is extremely painful. And it has gotten worse over the past couple months. Just getting dressed in the morning is absolutely excruciating now, and has left me blinded with pain, and nauseated. I have a super high tolerance for pain, but this is way beyond my limits.
I went to the doctor, just my general practitioner. I figured this was some kind of tendonitis, bursitis, or maybe a nerve? I was shocked to be told that the pain is due to arthritis. This seemed so much more painful than anything I've dealt with, with other parts of my body. I didn't expect that. Then the nurse tells me, "this is just the aging process" and told me there was nothing I could do about it. She told me to keep taking the pain meds (but they aren't doing anything!) and come back in late May for a follow up. I was desperate. "But I can barely function!" I told her. She LAUGHED at me, and told me "it's tough to get old!" I asked isn't there anything I can do to help the pain? She told me I needed to learn to live with it.
By the way, I'm 46. It's not like I'm a senior citizen here. I have a ten year old son. I work full time. I run an autism website. I have to be able to function. I have a life to live here. I can't just take it easy when the pain hits. It hurts to get dressed, undressed, to shop, to drive, to dry or curl my hair, to put my coat on, to reach up or behind, to lift, etc.
I can't live with this level of pain. If you told me it would be bad like this for a while and get better, I think I could cope. But I can't handle pain that nearly makes me faint, and pain that makes me sick to my stomach. Not every day. Not for the rest of my life.
Now, I'm no wimp. I handle a lot of pain. After I had my c-section, I took NO pain medication. Not even an aspirin. And I was down the basement doing laundry the week after I got home from the hospital. I went to work immediately after having two wisdom teeth pulled, in spite of the fact that half my face turned a horrific mixture of black and blue. I can even take cortisone shots without even a blink or a flinch. My tolerance for pain really freaked out my ortho. He'd never had a patient take a cortisone shot without even a flinch. Never. So it's not like I'm a simpering wuss. I can handle pain. But this shoulder thing, this is more pain than I can live with for the rest of my life. The thought honestly panics me. And to laugh at me, and tell me "it's tough to get old" is not only lacking in empathy, it's downright cold, and cruel. It hit me hard, and I was very depressed about it. It felt like someone chopped off my arm, for all the good it was to me at this point. And it was a kind of death sentence, at least for life as I knew it.
After a while, I decided to call my knee surgeon. I heard he specialized in knees, so I wouldn't be able to go to him for my shoulder, but at least maybe he could recommend someone. It was actually hard for me to make that call. I was really afraid that a second opinion would only confirm what the first doctor told me, and I wasn't ready to deal with that. But I finally screwed up my courage and called my knee miracle worker.
The nurse at that office was MUCH more compassionate. When I told her I couldn't live like this, she murmered "of course!" and spoke to me in an empathetic manner. Then she gave me fantastic news! She said my doctor DOES work on shoulders, and she'd be happy to get me an appointment to have him look at my shoulder!! YIPPEEEEE!!
I'm sure that this doctor will be able to accurately diagnose the situation, and help me to deal with this. Even if this is arthritis, and there is nothing that can be done to improve it, at least he might be able to help me figure out how to cope with it. Maybe physical therapy, or vitiamin/diet supplements, exercises, something, anything! Accupuncture, even! Don't just tell me to 'suck it up old woman.' I'm a human being. Give me some hope, some compassion, some control...
Anyway, now that my orthopedic surgeon is involved, I have hope again. Keep your fingers crossed for me, will ya?
Some of you know that I have arthritis in my knees, and that I have had knee surgery. I've been told I will be a candidate for replacement on my knees, but because of my YOUNG age (I love saying that), they will do arthoscopic surgery several times before they go the replacement route. It seems you can only have a limited number of knee replacements in your lifetime, and the replacements only last a limited numnber of years, so they don't want to do the surgery on someone so YOUNG (bear with me, this is fun!), so they go the "scope" route first. I sometimes walk with a cane when the pain acts up, or when the ground is icy (it makes me feel more stable). But I do find that the surgery I had a few years ago was like turning back the clock ten years.
I've had other arthritis pain, too. I have gout, which is the most common form of arthritis, and usually affects your toes or feet. I've got arthritis or tendonitis in my hands, feet, back, elbow and shoulder.
Lately my shoulder has been really giving me grief. It is extremely painful. And it has gotten worse over the past couple months. Just getting dressed in the morning is absolutely excruciating now, and has left me blinded with pain, and nauseated. I have a super high tolerance for pain, but this is way beyond my limits.
I went to the doctor, just my general practitioner. I figured this was some kind of tendonitis, bursitis, or maybe a nerve? I was shocked to be told that the pain is due to arthritis. This seemed so much more painful than anything I've dealt with, with other parts of my body. I didn't expect that. Then the nurse tells me, "this is just the aging process" and told me there was nothing I could do about it. She told me to keep taking the pain meds (but they aren't doing anything!) and come back in late May for a follow up. I was desperate. "But I can barely function!" I told her. She LAUGHED at me, and told me "it's tough to get old!" I asked isn't there anything I can do to help the pain? She told me I needed to learn to live with it.
By the way, I'm 46. It's not like I'm a senior citizen here. I have a ten year old son. I work full time. I run an autism website. I have to be able to function. I have a life to live here. I can't just take it easy when the pain hits. It hurts to get dressed, undressed, to shop, to drive, to dry or curl my hair, to put my coat on, to reach up or behind, to lift, etc.
I can't live with this level of pain. If you told me it would be bad like this for a while and get better, I think I could cope. But I can't handle pain that nearly makes me faint, and pain that makes me sick to my stomach. Not every day. Not for the rest of my life.
Now, I'm no wimp. I handle a lot of pain. After I had my c-section, I took NO pain medication. Not even an aspirin. And I was down the basement doing laundry the week after I got home from the hospital. I went to work immediately after having two wisdom teeth pulled, in spite of the fact that half my face turned a horrific mixture of black and blue. I can even take cortisone shots without even a blink or a flinch. My tolerance for pain really freaked out my ortho. He'd never had a patient take a cortisone shot without even a flinch. Never. So it's not like I'm a simpering wuss. I can handle pain. But this shoulder thing, this is more pain than I can live with for the rest of my life. The thought honestly panics me. And to laugh at me, and tell me "it's tough to get old" is not only lacking in empathy, it's downright cold, and cruel. It hit me hard, and I was very depressed about it. It felt like someone chopped off my arm, for all the good it was to me at this point. And it was a kind of death sentence, at least for life as I knew it.
After a while, I decided to call my knee surgeon. I heard he specialized in knees, so I wouldn't be able to go to him for my shoulder, but at least maybe he could recommend someone. It was actually hard for me to make that call. I was really afraid that a second opinion would only confirm what the first doctor told me, and I wasn't ready to deal with that. But I finally screwed up my courage and called my knee miracle worker.
The nurse at that office was MUCH more compassionate. When I told her I couldn't live like this, she murmered "of course!" and spoke to me in an empathetic manner. Then she gave me fantastic news! She said my doctor DOES work on shoulders, and she'd be happy to get me an appointment to have him look at my shoulder!! YIPPEEEEE!!
I'm sure that this doctor will be able to accurately diagnose the situation, and help me to deal with this. Even if this is arthritis, and there is nothing that can be done to improve it, at least he might be able to help me figure out how to cope with it. Maybe physical therapy, or vitiamin/diet supplements, exercises, something, anything! Accupuncture, even! Don't just tell me to 'suck it up old woman.' I'm a human being. Give me some hope, some compassion, some control...
Anyway, now that my orthopedic surgeon is involved, I have hope again. Keep your fingers crossed for me, will ya?
Wednesday, April 9, 2008
Help Chevy Help Autism
Play the video. Just a few minutes of your time could help make a lifetime o difference.
April is Autism Awareness Month and Chevrolet is proud to partner with Autism Speaks to help create awareness of autism and the effects it has on our families.
Just click on the “play video” button below and complete a virtual tour of the North American Car of the Year. When you do Chevy will donate to Autism Speaks. The more people who participate, the more Chevy will donate to help find the answers. And for your time, you will receive a free 30 day trial of XM Radio Online.
It’s one small click that can make a big difference for autism.
http://www.chevrolet.com/autismspeaks/
April is Autism Awareness Month and Chevrolet is proud to partner with Autism Speaks to help create awareness of autism and the effects it has on our families.
Just click on the “play video” button below and complete a virtual tour of the North American Car of the Year. When you do Chevy will donate to Autism Speaks. The more people who participate, the more Chevy will donate to help find the answers. And for your time, you will receive a free 30 day trial of XM Radio Online.
It’s one small click that can make a big difference for autism.
http://www.chevrolet.com/autismspeaks/
Sunday, March 30, 2008
Marti Murphy
http://www.youtube.com/watch?v=cQT-LMCGfq0
Autistic Motivational Speak Marty Murphy speak about Autism. Dec 2006, Normal Illinois. Born in 1963, Marty grew up in Normal, Illinois. By the time she was 5, it was clear that she was a child of special needs. However, more functional than one with stereotypical autism, she fell through the cracks of the school system. By the time she was nine, she was led to believe she was mentally retarded, marginally surviving mainstream schooling.
She furthered her education in Bloomington, Illinois where she was determined to have ADHD, autism, dyslexia and dyscalculia.
In 1988, she furthered her graduate studies at the University of Arizona. Through a series of unsuccessful college transfers, and part time jobs, she was informed by a doctor that she had a disability; "High Functioning Autism" also known as "Aspergers". She indeed had ADHD, dyslexia and dyscalculia, but most surprising, she was not retarded.
Marty went abroad, attending the Ballymaloe Culinary School in Shanagarry, County Cork, Ireland, to which her schooling gave her an opportunity on the open seas as a chef, but alas social circumstances were not a good match for her. Returning to Normal, Marty was in the darkest part of her life, as a selective/elective mute with a clear diagnosis of Autism Spectrum Disorder.
But being properly diagnosed made great differences in her life. Doctors found success in medications that finally helped her. Doctors encouraged her to get active in the local autism organization, and it was that advice that changed her life forever. With over seven total years of being mute, the program brought a comfort level that eventually led to Marty finally speak again. As a result, Marty not only speaks, she is now a prolific poet, author and public speaker. At age 39.
Now 44, Marty spends her free time as a highly sought after public speaker, offering first hand perspectives on autism. She works with school districts across the country to help put supports in place for particularly challenged children.
Marty Murphy currently serves on the Board of Directors for the Autism Society of Illinois as well as the Autism Society of McLean County. Through these two organizations, she finds she can finally help put direct support in place for children and families who struggle with autism.
Marty was recently quoted as saying "I have spoken to legislators about the tremendous needs that our communities have and will continue to have without increased funding, and hopefully I am helping to shine a positive light on the life long possibilities for individuals with autism, about who they can be and what they can achieve given the right supports".
THE OTHER SIDE
All her life, she has struggled with autism spectrum disorder. For years it ruled her, unable to speak at times, challenged with sensory overloads and volatile meltdowns. But, now she is being asked to act in the feature film NORMAL FOLK. Once again she will set herself apart from her "typical" peers to play the role of an autistic character named DORA. Be sure to catch the latest episode as we follow the behind the scenes progression of this feature film project NORMAL FOLK - A Graham Streeter Film.
http://www.youtube.com/watch?v=og_NVCyR9Jo
http://www.youtube.com/watch?v=XO7DC8QI1-Q
http://www.youtube.com/watch?v=jA5TLk8Dt3I
http://www.youtube.com/watch?v=2WbqRJ2kwG0
www.normalfolk.com
Autistic Motivational Speak Marty Murphy speak about Autism. Dec 2006, Normal Illinois. Born in 1963, Marty grew up in Normal, Illinois. By the time she was 5, it was clear that she was a child of special needs. However, more functional than one with stereotypical autism, she fell through the cracks of the school system. By the time she was nine, she was led to believe she was mentally retarded, marginally surviving mainstream schooling.
She furthered her education in Bloomington, Illinois where she was determined to have ADHD, autism, dyslexia and dyscalculia.
In 1988, she furthered her graduate studies at the University of Arizona. Through a series of unsuccessful college transfers, and part time jobs, she was informed by a doctor that she had a disability; "High Functioning Autism" also known as "Aspergers". She indeed had ADHD, dyslexia and dyscalculia, but most surprising, she was not retarded.
Marty went abroad, attending the Ballymaloe Culinary School in Shanagarry, County Cork, Ireland, to which her schooling gave her an opportunity on the open seas as a chef, but alas social circumstances were not a good match for her. Returning to Normal, Marty was in the darkest part of her life, as a selective/elective mute with a clear diagnosis of Autism Spectrum Disorder.
But being properly diagnosed made great differences in her life. Doctors found success in medications that finally helped her. Doctors encouraged her to get active in the local autism organization, and it was that advice that changed her life forever. With over seven total years of being mute, the program brought a comfort level that eventually led to Marty finally speak again. As a result, Marty not only speaks, she is now a prolific poet, author and public speaker. At age 39.
Now 44, Marty spends her free time as a highly sought after public speaker, offering first hand perspectives on autism. She works with school districts across the country to help put supports in place for particularly challenged children.
Marty Murphy currently serves on the Board of Directors for the Autism Society of Illinois as well as the Autism Society of McLean County. Through these two organizations, she finds she can finally help put direct support in place for children and families who struggle with autism.
Marty was recently quoted as saying "I have spoken to legislators about the tremendous needs that our communities have and will continue to have without increased funding, and hopefully I am helping to shine a positive light on the life long possibilities for individuals with autism, about who they can be and what they can achieve given the right supports".
THE OTHER SIDE
All her life, she has struggled with autism spectrum disorder. For years it ruled her, unable to speak at times, challenged with sensory overloads and volatile meltdowns. But, now she is being asked to act in the feature film NORMAL FOLK. Once again she will set herself apart from her "typical" peers to play the role of an autistic character named DORA. Be sure to catch the latest episode as we follow the behind the scenes progression of this feature film project NORMAL FOLK - A Graham Streeter Film.
http://www.youtube.com/watch?v=og_NVCyR9Jo
http://www.youtube.com/watch?v=XO7DC8QI1-Q
http://www.youtube.com/watch?v=jA5TLk8Dt3I
http://www.youtube.com/watch?v=2WbqRJ2kwG0
www.normalfolk.com
Friday, March 7, 2008
Good Evening Mr. Phelps
The school sent me an email regarding my request to tape the IEP meetings:
"The meetings should not be taped. If a parent tapes the meetings without staff permission it is a felony eavesdropping." Therefore, the meetings will not be taped and we will all continue to take personal notes. If you have any questions regarding this matter, please don't hesitate to contact XXXXXXXX at the XXXXXXX legal department.
Felony eavesdropping? First of all, I asked to tape the last meeting. I was told that they were reluctant to let me do so unless the principal allowed it. When the principal arrived, she permitted me to tape, but at that point, there was only about ten minutes of the meeting left, if that. The tape recorder was not hidden, nor was it running without permission - they all could see it. I did not eavesdrop.
Second, this was in response to my email about taping future meetings. There was no attempt to do so without permission. It's all been above board. And I am rather offended that they would even say that to me.
Thirdly, why shouldn't meetings be taped? On IllinoisSpecialEd.com, they even go so far as to recommend a brand of digital tape recorder to use for IEP meetings! Yet in my district, they not only believe that meetings should not be taped, but that to do so without permission would be felony eavesdropping?
I have to wonder why they are so resistant to tape recorders, but allow note taking?
What do you suppose they are afraid of?
"The meetings should not be taped. If a parent tapes the meetings without staff permission it is a felony eavesdropping." Therefore, the meetings will not be taped and we will all continue to take personal notes. If you have any questions regarding this matter, please don't hesitate to contact XXXXXXXX at the XXXXXXX legal department.
Felony eavesdropping? First of all, I asked to tape the last meeting. I was told that they were reluctant to let me do so unless the principal allowed it. When the principal arrived, she permitted me to tape, but at that point, there was only about ten minutes of the meeting left, if that. The tape recorder was not hidden, nor was it running without permission - they all could see it. I did not eavesdrop.
Second, this was in response to my email about taping future meetings. There was no attempt to do so without permission. It's all been above board. And I am rather offended that they would even say that to me.
Thirdly, why shouldn't meetings be taped? On IllinoisSpecialEd.com, they even go so far as to recommend a brand of digital tape recorder to use for IEP meetings! Yet in my district, they not only believe that meetings should not be taped, but that to do so without permission would be felony eavesdropping?
I have to wonder why they are so resistant to tape recorders, but allow note taking?
What do you suppose they are afraid of?
Tuesday, March 4, 2008
Great Quote
"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
-Eleanor Roosevelt (1884-1962), U.S. First Lady, diplomat, human rights activist
Real Simple Magazine
Are you familiar with Real Simple Magazine? Check out this casting search for a child with autism!
Subject: Real Simple magazine casting search/Autism
Hi: For an upcoming Real Simple story, we would like to profile a family
with an autistic child between the ages of 10 and 15. Ideally, the family
was able to intervene early to get the necessary therapy and special
education for their child-- and now the child is doing very well. It would
be great if the child had older siblings who might be willing to speak about
growing up with a special needs sibling.
The family that is chosen will be photographed for the magazine.
If you'd like to share your story to be considered, please respond with the
following information
Name
Contact info: phone and email
Age
Profession
Location
Married?
Kids (ages)
A jpeg of you and your family
Plus a description of when your child was diagnosed and how, what type of
therapy and education you pursued, how your child is now doing and the
impact all of this has had on you and your family.
And thanks for forwarding to others.
Claudia Bloom, casting
REAL SIMPLE
claudia_bloom@realsimple.com
Your submission to Real Simple, including contact information, gives us the
right to modify, use, distribute, reproduce, publish and display the
submission indefinitely in all print, digital and other media, means, and
forms without any payment to you. You hereby represent that you haven't
copied the content from a book, magazine, newspaper, or other commercial
source.
Unfortunately, I'm not able to answer each response personally since I
receive so many. If there's interest then one of our editors will contact
you at that time.
Subject: Real Simple magazine casting search/Autism
Hi: For an upcoming Real Simple story, we would like to profile a family
with an autistic child between the ages of 10 and 15. Ideally, the family
was able to intervene early to get the necessary therapy and special
education for their child-- and now the child is doing very well. It would
be great if the child had older siblings who might be willing to speak about
growing up with a special needs sibling.
The family that is chosen will be photographed for the magazine.
If you'd like to share your story to be considered, please respond with the
following information
Name
Contact info: phone and email
Age
Profession
Location
Married?
Kids (ages)
A jpeg of you and your family
Plus a description of when your child was diagnosed and how, what type of
therapy and education you pursued, how your child is now doing and the
impact all of this has had on you and your family.
And thanks for forwarding to others.
Claudia Bloom, casting
REAL SIMPLE
claudia_bloom@realsimple.com
Your submission to Real Simple, including contact information, gives us the
right to modify, use, distribute, reproduce, publish and display the
submission indefinitely in all print, digital and other media, means, and
forms without any payment to you. You hereby represent that you haven't
copied the content from a book, magazine, newspaper, or other commercial
source.
Unfortunately, I'm not able to answer each response personally since I
receive so many. If there's interest then one of our editors will contact
you at that time.
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