Listen to NPR Interview here with Elisabeth's friend Lennard J. Davis, a professor of disability studies at the University of Illinois, who isn't amused by the use of the word "retard."
YOU GO LENNARD!!!
Tuesday, August 12, 2008
STILLER'S Tropic Thunder Blunder
The review from our film critic Moria MacDonald in Seattle who says "no delivery"
HERE
Take Elisabeth's advice:
1)Stay home.
2)Watch your kids instead.
3)Count your blessings.
HERE
Take Elisabeth's advice:
1)Stay home.
2)Watch your kids instead.
3)Count your blessings.
Monday, August 11, 2008
Please Say Something, Don't Just Stare ...
It happens everywhere we go with Elisabeth. People stare. They stare and stare and stare and stare. I've become very self conscious about it.
Most of the time, I'm pretty creative or bring it to Elisabeth's attention that she has an audience and to be on her best behavior. If she's slurping or sliming, I usually tell her that's not going to go over big with her new friends.
Most people don't know the changes of cloths we go through or the amount of care we put into making our children presentable so they fit in with the rest. I can have Elisabeth ready for a shopping trip and by the time we leave, she's ready for a shirt change, a hair comb, lotion on her hands to work out the rubbery raisin skin, or whatever it takes to make her "presentable. Her sister's are very focused on "the look" that will get Elisabeth the desired attention and "the look" that will disgust people and stop them from coming up to her.
Today while in Target, two girls about about Elisabeth's age just stared. One even looked at her and said, "that's so gross" referring to Elisabeth's preoccupation with her tongue and chew aids. It hurt. It hurt Elisabeth.
At the Limited Too, recently, a group of girls probably younger than Elisabeth reacted the same way using the "R" word and laughed. Fortunately, her younger sister was trying on clothes while this was happening.
I guess I'm writing this because I want people to know it's okay to come up to us and say hello or even help me distract Elisabeth from being so fixated on her hand, fingers, cloths or hair. If you're with your children, remember children learn from example. They'll do or say what you, the adult, will do or say.
In this situation, it's okay to say "hello." If your kids ask "what wrong with her" tell them you don't know.
Should it matter?
You would be surprised how easy it is to get a smile from our kids. When people say "hello" she usually stops she's doing long enough to wave or smile.
Most of the time, I'm pretty creative or bring it to Elisabeth's attention that she has an audience and to be on her best behavior. If she's slurping or sliming, I usually tell her that's not going to go over big with her new friends.
Most people don't know the changes of cloths we go through or the amount of care we put into making our children presentable so they fit in with the rest. I can have Elisabeth ready for a shopping trip and by the time we leave, she's ready for a shirt change, a hair comb, lotion on her hands to work out the rubbery raisin skin, or whatever it takes to make her "presentable. Her sister's are very focused on "the look" that will get Elisabeth the desired attention and "the look" that will disgust people and stop them from coming up to her.
Today while in Target, two girls about about Elisabeth's age just stared. One even looked at her and said, "that's so gross" referring to Elisabeth's preoccupation with her tongue and chew aids. It hurt. It hurt Elisabeth.
At the Limited Too, recently, a group of girls probably younger than Elisabeth reacted the same way using the "R" word and laughed. Fortunately, her younger sister was trying on clothes while this was happening.
I guess I'm writing this because I want people to know it's okay to come up to us and say hello or even help me distract Elisabeth from being so fixated on her hand, fingers, cloths or hair. If you're with your children, remember children learn from example. They'll do or say what you, the adult, will do or say.
In this situation, it's okay to say "hello." If your kids ask "what wrong with her" tell them you don't know.
Should it matter?
You would be surprised how easy it is to get a smile from our kids. When people say "hello" she usually stops she's doing long enough to wave or smile.
PLEASE BOYCOTT TROPIC THUNDER
AAPD Condemns Portrayal of Disabled Character, Use of the Word 'Retard' in 'Tropic Thunder'
Last update: 6:29 p.m. EDT Aug. 11, 2008
WASHINGTON, Aug 11, 2008 /PRNewswire-USNewswire via COMTEX/ --
Depiction of character and repeated use of word "horrifying" The largest cross-disability membership organization in the U.S. on Monday condemned all of the entities involved in creating, producing and marketing the movie "Tropic Thunder" for the use of the word "retard" and their portrayal of an intellectually disabled character in the movie.
The American Association of People with Disabilities (AAPD) helped organize a coalition of disability groups that have come together to boycott the film. Members of the coalition, including AAPD's President and CEO, Andrew Imparato, met with DreamWorks executives last week to discuss concerns about the film.
The movie is a movie-industry spoof depicting a caricature of an intellectually disabled person -- a character called "Simple Jack," played by actor Ben Stiller's character -- which is a continuation of the horrifying portrayal of disabled characters in entertainment.
AAPD is also disgusted at the use of the word "retard" numerous times in the movie and promotional items for the film, including the promotional slogan, "Once upon a time there was a retard," in the now-defunct Web site for the movie-within-a-movie, "Simple Jack."
"Both the use of this word and the appalling portrayal of an intellectually disabled character in this movie are incredibly damaging to people with intellectual disabilities," Imparato said after viewing the film Monday. "This movie perpetuates use of a hateful word the disability community is trying to eradicate from our country's vocabulary. Although the movie is considered satire, this depiction of a person with intellectual disabilities is far from funny."
"One of the biggest challenges for people with intellectual disabilities is when society encourages this portrayal of them," said Cheryl Senenbrenner, Chair of the American Association of People with Disabilities board, whose 38-year-old sister, Tara Warren, has Down Syndrome. "It's almost the worst adversity they face. People like Tara can do phenomenal things. She's very highly accomplished."
"As a person with a disability, the movie didn't make me feel good," said AAPD board member and President of Self-Advocates of Indiana, Inc. Betty Williams after viewing the film Monday. "I felt really horrible hearing them say the 'r' word so many times, so easily."
AAPD is also disappointed that the filmmakers included in the movie reportedly discussed the potentially offensive content of the movie with other groups before moving forward with production, but did not hold similar consultations with the disability community.
AAPD issued a joint statement as part of the coalition, which includes the Special Olympics, Arc of the United States and the National Council on Independent Living, criticizing the film and calling on Hollywood to remedy the harm that is being done by the film.
The American Association of People with Disabilities (AAPD), the country's largest cross-disability membership organization, organizes the disability community to be a powerful voice for change - economically, politically, and socially. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website: http://www.aapd.com.
SOURCE American Association of People With Disabilities http://www.aapd.com
Last update: 6:29 p.m. EDT Aug. 11, 2008
WASHINGTON, Aug 11, 2008 /PRNewswire-USNewswire via COMTEX/ --
Depiction of character and repeated use of word "horrifying" The largest cross-disability membership organization in the U.S. on Monday condemned all of the entities involved in creating, producing and marketing the movie "Tropic Thunder" for the use of the word "retard" and their portrayal of an intellectually disabled character in the movie.
The American Association of People with Disabilities (AAPD) helped organize a coalition of disability groups that have come together to boycott the film. Members of the coalition, including AAPD's President and CEO, Andrew Imparato, met with DreamWorks executives last week to discuss concerns about the film.
The movie is a movie-industry spoof depicting a caricature of an intellectually disabled person -- a character called "Simple Jack," played by actor Ben Stiller's character -- which is a continuation of the horrifying portrayal of disabled characters in entertainment.
AAPD is also disgusted at the use of the word "retard" numerous times in the movie and promotional items for the film, including the promotional slogan, "Once upon a time there was a retard," in the now-defunct Web site for the movie-within-a-movie, "Simple Jack."
"Both the use of this word and the appalling portrayal of an intellectually disabled character in this movie are incredibly damaging to people with intellectual disabilities," Imparato said after viewing the film Monday. "This movie perpetuates use of a hateful word the disability community is trying to eradicate from our country's vocabulary. Although the movie is considered satire, this depiction of a person with intellectual disabilities is far from funny."
"One of the biggest challenges for people with intellectual disabilities is when society encourages this portrayal of them," said Cheryl Senenbrenner, Chair of the American Association of People with Disabilities board, whose 38-year-old sister, Tara Warren, has Down Syndrome. "It's almost the worst adversity they face. People like Tara can do phenomenal things. She's very highly accomplished."
"As a person with a disability, the movie didn't make me feel good," said AAPD board member and President of Self-Advocates of Indiana, Inc. Betty Williams after viewing the film Monday. "I felt really horrible hearing them say the 'r' word so many times, so easily."
AAPD is also disappointed that the filmmakers included in the movie reportedly discussed the potentially offensive content of the movie with other groups before moving forward with production, but did not hold similar consultations with the disability community.
AAPD issued a joint statement as part of the coalition, which includes the Special Olympics, Arc of the United States and the National Council on Independent Living, criticizing the film and calling on Hollywood to remedy the harm that is being done by the film.
The American Association of People with Disabilities (AAPD), the country's largest cross-disability membership organization, organizes the disability community to be a powerful voice for change - economically, politically, and socially. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website: http://www.aapd.com.
SOURCE American Association of People With Disabilities http://www.aapd.com
Saturday, August 9, 2008
Message from Dark Knight 13
I copied this message from my friend Dark Knight who posted this question to parents like me on Patricia Bauer's site here
First, I don't know where to start but how about with the quote from Jonathan Swift who also said "satire is a sort of glass, wherein beholders do generally discover everybody's face but their own."
Jonathan Swift relied on creative genius to write his satires about political injustices and minority causes. Ben Stiller on the other hand, has relied on cheap shots using farce to exploit the "industry standard" depicting our family and friends.
In all honesty, Dark Knight 13 my friend, I don't have issues with Rosie, Dustin, Sean, Cuba or anyone who wants to take on the challenge of portraying my family and friends. More power to them. If you or anyone else thinks these actors look ridiculous doing it, well maybe you don't feel comfortable with "disability" or how it looks.
Yes, sometimes "it" looks strange. It looks "weird" to some people, too. Often times, it makes people uncomfortable. Regardless, my family and friends are not their disability. They are people first so if their humanity can be conveyed through acting somehow, more power to the acting guild.
On the other hand, if you think Rosie, Dustin, Sean, Cuba or anybody else were trying to pity, politicize, parody, or patronize our family and friends, please use a platform different then a farce-comedy directed at the illiterati, ignorami, and idioti with a movie tag line "never go full retard."
How can you all so egregiously miss the satiric point of Simple Jack? It is not making fun of those with mental retardation; instead, it is satirizing the callous actors and actresses in Hollyweird that exploit those individuals and use such roles to bolster their Oscar chances and make themselves seem socially conscious. The use of words like “retard” simply emphasize the actors’ complete lack of empathy for the subject of their portrayal. If I had a child with this disability, I’d find Sean Penn’s and Rosie o’ Donnell’s “serious” movies much more offensive than Simple Jack.
Don’t boycott Tropic Thunder…instead use that Simple Jack subplot as an example to Hollywood of what you will no longer tolerate from movies about the developmentally disabled. After all, to paraphrase Jonathan Swift, the point of satire is to point out flaws in the hopes of redeeming them.
First, I don't know where to start but how about with the quote from Jonathan Swift who also said "satire is a sort of glass, wherein beholders do generally discover everybody's face but their own."
Jonathan Swift relied on creative genius to write his satires about political injustices and minority causes. Ben Stiller on the other hand, has relied on cheap shots using farce to exploit the "industry standard" depicting our family and friends.
In all honesty, Dark Knight 13 my friend, I don't have issues with Rosie, Dustin, Sean, Cuba or anyone who wants to take on the challenge of portraying my family and friends. More power to them. If you or anyone else thinks these actors look ridiculous doing it, well maybe you don't feel comfortable with "disability" or how it looks.
Yes, sometimes "it" looks strange. It looks "weird" to some people, too. Often times, it makes people uncomfortable. Regardless, my family and friends are not their disability. They are people first so if their humanity can be conveyed through acting somehow, more power to the acting guild.
On the other hand, if you think Rosie, Dustin, Sean, Cuba or anybody else were trying to pity, politicize, parody, or patronize our family and friends, please use a platform different then a farce-comedy directed at the illiterati, ignorami, and idioti with a movie tag line "never go full retard."
Wednesday, August 6, 2008
Tropic Thunder: Focusing on the Problem, Not the Solution
This movie has caused quite a stir even before it's release date.
It's a parody about the film industry and at the center is a character whose acting career is on the skids. For laughs, the movie relies on an old technique of using words and stereotypes that makes everyone laugh at the expense of people who are labeled with mental retardation disabilities. For that, one can only hope that they go easy the careers of Stiller and Black because they have stooped to an all time low on this one.
In the movie itself, there is a comedy-parody movie about the industry standard of portraying people with mental retardation disability labels. Unfortunately, Mr. Stiller does not understand that once he enters into the political arena of creating characterizations of our children that reflect negatively on their humanity he becomes part of the culture creating the barriers our children have to face each day. Furthermore, if he had an issue with Hollywood's "industry standard" then he should have used a more proactive approach rather than perpetuating the characterization with ongoing gags about "going full retard."
I heard that DreamWorks just pulled the plug on one of the website releasing this statement:
A consortium of groups including the Special Olympics and the Down Syndrome Assn. of Los Angeles first contacted the studio Friday and set up a meeting with DreamWorks CEO Stacey Snider and other senior executives to discuss their concerns about the film. That meeting is scheduled to take place this afternoon .
DreamWorks decided to pull the plug on the site Monday night as a preemptive move.
So...
... in DreamWorks reality bubble, the right context for this kind of characterization is their movie, "Tropic Thunder," a movie that claims the running gags about "retards" was not intended to be funny because "going full retard" isn't really meant to be funny. We should only be laughing if we see the satirical portrayal of "industry standard" and the actor on the big screen who is pretending to act like "retard."
So, "in context" means it is acceptable for DreamWorks to portray people with mental retardation labels as long as it's making fun of the perpetrators who help perpetuate inaccurate characterizations of our children?
Isn't that focusing on the problem, not the solution?
Either way, I still don't get how any of this is funny much less material for "the hottest movie this summer."
The ends do not justify the means.
Anytime.
Anywhere.
Anyone.
It's a parody about the film industry and at the center is a character whose acting career is on the skids. For laughs, the movie relies on an old technique of using words and stereotypes that makes everyone laugh at the expense of people who are labeled with mental retardation disabilities. For that, one can only hope that they go easy the careers of Stiller and Black because they have stooped to an all time low on this one.
In the movie itself, there is a comedy-parody movie about the industry standard of portraying people with mental retardation disability labels. Unfortunately, Mr. Stiller does not understand that once he enters into the political arena of creating characterizations of our children that reflect negatively on their humanity he becomes part of the culture creating the barriers our children have to face each day. Furthermore, if he had an issue with Hollywood's "industry standard" then he should have used a more proactive approach rather than perpetuating the characterization with ongoing gags about "going full retard."
I heard that DreamWorks just pulled the plug on one of the website releasing this statement:
A consortium of groups including the Special Olympics and the Down Syndrome Assn. of Los Angeles first contacted the studio Friday and set up a meeting with DreamWorks CEO Stacey Snider and other senior executives to discuss their concerns about the film. That meeting is scheduled to take place this afternoon .
DreamWorks decided to pull the plug on the site Monday night as a preemptive move.
"We heard their concerns, and we understand that taken out of context, the site appeared to be insensitive to people with disabilities," DreamWorks spokesman Chip Sullivan said."
So...
... in DreamWorks reality bubble, the right context for this kind of characterization is their movie, "Tropic Thunder," a movie that claims the running gags about "retards" was not intended to be funny because "going full retard" isn't really meant to be funny. We should only be laughing if we see the satirical portrayal of "industry standard" and the actor on the big screen who is pretending to act like "retard."
So, "in context" means it is acceptable for DreamWorks to portray people with mental retardation labels as long as it's making fun of the perpetrators who help perpetuate inaccurate characterizations of our children?
Isn't that focusing on the problem, not the solution?
Either way, I still don't get how any of this is funny much less material for "the hottest movie this summer."
The ends do not justify the means.
Anytime.
Anywhere.
Anyone.
Monday, August 4, 2008
Breakfast at Tiffany's
Elisabeth really enjoyed Chicago last week.
We spent a good deal of time hiking down Michigan visiting the museums, Navy Pier, and stores. Oh the many, many stores. One store Elisabeth visited was Tiffany & Company because her grandmother wanted to price one of the charm bracelets there. I told my mother, "You know what they say about Tiffany's, don't you? If you can't see the price, you probably can't afford to buy it."
Elisabeth disagreed, so in we went right about breakfast time. All six of us. Elisabeth's mother, sister, grandmother, auntie, and cousin looking more like we were hiking through Glacier Park and observing rock formations instead of the "Million Dollar Mile."
As it turned out, the girls were fascinated with the jewelry and one can always dream, right? But halfway through the visit, Elisabeth was becoming very irritated so I headed to the restrooms three levels up to check it out.
As it turned out, Elisabeth needed the facilities and fortunately Tiffany's restrooms were more than accommodating for her needs. To be safe and spare a Tiffany shopper from embarrassment, I asked Elisabeth's eleven year old sister to stand guard at the door to prevent anyone from walking in on us.
It was taking a little longer than I expected but I overheard on the other side of the door, a woman's voice inquiring why it was necessary to guard the door. Elisabeth's younger sister responded by saying "my mom is in there with my sister and they need a little privacy. She should only be a moment." After a few moments, I overheard the woman whose patience was wearing thin I imagined asking my daughter, "How old is your sister?"
"Fourteen."
Silence.
"Oh."
I suppose this stumped the woman but she either continued to wait instead of barging in like so many people do after their curiosities get the best of them or she simply moved on because I didn't hear anything else afterward.
After Elisabeth was ready, I opened the door and found standing next to my daughter an employee wearing business attire and sporting a store manager's badge. She smiled at Elisabeth and me, helped me with the door, and went her separate way.
I couldn't imagine in a million years what was going on in that woman's mind while she was standing there and waiting to use the bathroom. A bathroom that was being guarded by an an eleven year old who offered nothing more than a simple request for her to wait because a 14 year old sister needed privacy. In Tiffany and Co.'s restroom of all places.
And this woman waited patiently giving Elisabeth the dignity and privacy she deserved not because she was a shopper at Tiffany's, not because she was disabled, but because she is a human being.
We spent a good deal of time hiking down Michigan visiting the museums, Navy Pier, and stores. Oh the many, many stores. One store Elisabeth visited was Tiffany & Company because her grandmother wanted to price one of the charm bracelets there. I told my mother, "You know what they say about Tiffany's, don't you? If you can't see the price, you probably can't afford to buy it."
Elisabeth disagreed, so in we went right about breakfast time. All six of us. Elisabeth's mother, sister, grandmother, auntie, and cousin looking more like we were hiking through Glacier Park and observing rock formations instead of the "Million Dollar Mile."
As it turned out, the girls were fascinated with the jewelry and one can always dream, right? But halfway through the visit, Elisabeth was becoming very irritated so I headed to the restrooms three levels up to check it out.
As it turned out, Elisabeth needed the facilities and fortunately Tiffany's restrooms were more than accommodating for her needs. To be safe and spare a Tiffany shopper from embarrassment, I asked Elisabeth's eleven year old sister to stand guard at the door to prevent anyone from walking in on us.
It was taking a little longer than I expected but I overheard on the other side of the door, a woman's voice inquiring why it was necessary to guard the door. Elisabeth's younger sister responded by saying "my mom is in there with my sister and they need a little privacy. She should only be a moment." After a few moments, I overheard the woman whose patience was wearing thin I imagined asking my daughter, "How old is your sister?"
"Fourteen."
Silence.
"Oh."
I suppose this stumped the woman but she either continued to wait instead of barging in like so many people do after their curiosities get the best of them or she simply moved on because I didn't hear anything else afterward.
After Elisabeth was ready, I opened the door and found standing next to my daughter an employee wearing business attire and sporting a store manager's badge. She smiled at Elisabeth and me, helped me with the door, and went her separate way.
I couldn't imagine in a million years what was going on in that woman's mind while she was standing there and waiting to use the bathroom. A bathroom that was being guarded by an an eleven year old who offered nothing more than a simple request for her to wait because a 14 year old sister needed privacy. In Tiffany and Co.'s restroom of all places.
And this woman waited patiently giving Elisabeth the dignity and privacy she deserved not because she was a shopper at Tiffany's, not because she was disabled, but because she is a human being.
Thursday, July 10, 2008
Dear Joan, Miracles Happen!
Yesterday, a miracle happened at 5 p.m.
And all it took was a week full of rainy days, polyethylene glycol, and a few episodes of "Joan of Arcadia."
I had this theory that if I timed the polyethylene glycol (stool softener) and the "sittings" in the potty chair morning, lunch, dinner time, and bed time, that eventually a pattern would emerge for Elisabeth to use the potty instead of her diaper.
She spent a good deal of time on the floor with toys scattered on the floor. Maybe putting her in a different chair would bring different results. Her body was beginning to tolerate sitting when she turned six provided she had support. All it took was finding a safe potty chair to give her the support she needed. All it took was a little time for relaxation.
Since life happens, year after year, my theory remained what it was. Believe me when I write that I tried. I honest-to-God tried to stay on a schedule, but Elisabeth just wasn't "getting it." The only pattern we saw emerging was relying on this time to do something that didn't involve her.
It was raining yesterday, like the day before, and the day before that one, so we decided to go to the library. My ten year old went straight over to the kid's section and I took Elisabeth over to non-fiction to find that book about potty training to make sure I wasn't missing something. I needed inspiration.
I scanned the library shelves and over to my left, in big red letters I saw "Joan of Arcadia."
Is God talking to me or was I being diverted from my job as Elisabeth's Mom? My job to teach her how to use the potty? Selfishly, wandered over to the DVDs and picked up the first few episodes. I loved that program. Watching "Joan of Arcadia" with my family eating popcorn or ice cream reminded me of the old days in 1965 when I was growing up. When watching television with your family was a treat.
In 2003, it was the ONLY program on network television with which we could relate as a family. It was a good family show and it was going to rain the rest of the day. The kid's needed a diversion. Maybe even a little God. I needed a break from reality.
Like me, both Elisabeth and her ten year old sister were hooked on the "Joan" character so by the time the first episode ended it was time to get ready for dinner. Just as the background music started to play, I picked Elisabeth up and headed towards the bathroom to give her time to sit on her adapted potty.
I sat her down, put her safety belt on, and gave her the "talk" which for the last two weeks seemed pointless since she wasn't showing any sign of interest. The only pattern emerging here was my own using this time to start dinner.
I handed her her plastic chains to keep her busy. Just for a while. Elisabeth loves her plastic chains. Ask anyone who knows her.
The phone rang. I started dinner. And time passed. I peeked in around the door from time to time to check up and there she sat. As happy as she always is. Slurping at her chains. Her shirt. She smiled when I called her name.
I let her be for a little more time. A little extra time. She's safe. She's happy. And I still had more to do in the kitchen. What more could I ask for?
Dinner was almost ready. The table was set. I went in to get Elisabeth who was looking quite the 14 year old. Her head was tilted and she was very involved with her plastic chains. She was grinning. She was happy to see me like always. But this time when I lifted her off the seat, I saw something I've been waiting for a long, long time see.
A miracle.
Miracles happen.
And all it took was a week full of rainy days, polyethylene glycol, and a few episodes of "Joan of Arcadia."
I had this theory that if I timed the polyethylene glycol (stool softener) and the "sittings" in the potty chair morning, lunch, dinner time, and bed time, that eventually a pattern would emerge for Elisabeth to use the potty instead of her diaper.
She spent a good deal of time on the floor with toys scattered on the floor. Maybe putting her in a different chair would bring different results. Her body was beginning to tolerate sitting when she turned six provided she had support. All it took was finding a safe potty chair to give her the support she needed. All it took was a little time for relaxation.
Since life happens, year after year, my theory remained what it was. Believe me when I write that I tried. I honest-to-God tried to stay on a schedule, but Elisabeth just wasn't "getting it." The only pattern we saw emerging was relying on this time to do something that didn't involve her.
It was raining yesterday, like the day before, and the day before that one, so we decided to go to the library. My ten year old went straight over to the kid's section and I took Elisabeth over to non-fiction to find that book about potty training to make sure I wasn't missing something. I needed inspiration.
I scanned the library shelves and over to my left, in big red letters I saw "Joan of Arcadia."
Is God talking to me or was I being diverted from my job as Elisabeth's Mom? My job to teach her how to use the potty? Selfishly, wandered over to the DVDs and picked up the first few episodes. I loved that program. Watching "Joan of Arcadia" with my family eating popcorn or ice cream reminded me of the old days in 1965 when I was growing up. When watching television with your family was a treat.
In 2003, it was the ONLY program on network television with which we could relate as a family. It was a good family show and it was going to rain the rest of the day. The kid's needed a diversion. Maybe even a little God. I needed a break from reality.
Like me, both Elisabeth and her ten year old sister were hooked on the "Joan" character so by the time the first episode ended it was time to get ready for dinner. Just as the background music started to play, I picked Elisabeth up and headed towards the bathroom to give her time to sit on her adapted potty.
I sat her down, put her safety belt on, and gave her the "talk" which for the last two weeks seemed pointless since she wasn't showing any sign of interest. The only pattern emerging here was my own using this time to start dinner.
I handed her her plastic chains to keep her busy. Just for a while. Elisabeth loves her plastic chains. Ask anyone who knows her.
The phone rang. I started dinner. And time passed. I peeked in around the door from time to time to check up and there she sat. As happy as she always is. Slurping at her chains. Her shirt. She smiled when I called her name.
I let her be for a little more time. A little extra time. She's safe. She's happy. And I still had more to do in the kitchen. What more could I ask for?
Dinner was almost ready. The table was set. I went in to get Elisabeth who was looking quite the 14 year old. Her head was tilted and she was very involved with her plastic chains. She was grinning. She was happy to see me like always. But this time when I lifted her off the seat, I saw something I've been waiting for a long, long time see.
A miracle.
Miracles happen.
Sunday, June 29, 2008
Shortbus
Looking for a good summer read? Here's THE BOOK for your summer reading.
Labeled "dyslexic and profoundly learning disabled with attention and behavior problems," Jonathan Mooney was a short bus rider--a derogatory term used for kids in special education and a distinction that told the world he wasn't "normal." Along with other kids with special challenges, he grew up hearing himself denigrated daily. Ultimately, Mooney surprised skeptics by graduating with honors from Brown University. But he could never escape his past, so he hit the road. To free himself and to learn how others had moved beyond labels, he bought his own short bus and set out cross-country, looking for kids who had dreamed up magical, beautiful ways to overcome the obstacles that separated them from the so-called normal world.
Labeled "dyslexic and profoundly learning disabled with attention and behavior problems," Jonathan Mooney was a short bus rider--a derogatory term used for kids in special education and a distinction that told the world he wasn't "normal." Along with other kids with special challenges, he grew up hearing himself denigrated daily. Ultimately, Mooney surprised skeptics by graduating with honors from Brown University. But he could never escape his past, so he hit the road. To free himself and to learn how others had moved beyond labels, he bought his own short bus and set out cross-country, looking for kids who had dreamed up magical, beautiful ways to overcome the obstacles that separated them from the so-called normal world.
Monday, June 23, 2008
Mom! There's a rooster on the beach!!!
Backpacking through Bordeaux Mountain ...
Wading in the ocean with Dad
Mom! Did I just see a rooster go by?
No, Honey, it's only a hen.
Wading in the ocean with Dad
Mom! Did I just see a rooster go by?
No, Honey, it's only a hen.
Smells Like Teen Spirit
This morning, I hear her crying instead of the usual slurping she does during her waking ritual.
When she was young, she would tap a button with a part of her body that activated music when she was getting too close to the rail but she doesn't do that anymore. Now, she tries to get off the bed on her own.
This morning, it's different. She's obviously very sad from a bad dream or maybe it's a gas bubble from the ungodly amount of birthday food intake from yesterday or maybe cramps or maybe constipation or maybe her back hurts. (She had two rods fused when she was 8 years old to correct the helix forming in her back.)
She's still very small for her age. She weighs under 50 pounds and barely comes up to her younger 10 year old sister's shoulder. An Xray of her feet resembles beaver paws from all the paddling she does when using her pony walker and gait trainer. If you let her transfer her weight bearing death grip hands to your wrists, she'll walk very methodically.
Her visual field is a mystery. She doesn't have a focused gaze. Her eyes wander around your face. Her communication is very simple. She uses a tech talk and a saddle switch for making choices.
Recently, we were going through some old summer clothes in her closet and recorded her switch buttons with phrases "OH! I like that!" and on the other "EWWW! I don't like that!" Next, we displayed one article of clothing at a time to let her choose. It was pretty clear after the first few pieces that she wasn't the least bit interested in sorting out her summer cloths. What 13 year old likes to clean her bedroom?
From her play stuff to the stuff she wears, we're easing into "teen hood" slowly getting rid of the "baby stuff." Her habits, preferences, or her growth chart hasn't changed much since she was 7 or 8 years old so a lot of the stuff isn't age appropriate for a 13 year old.
What has changed is her taste in music. She loves drums, guitars, and shakes her head to the rhythm of songs she really likes.
This morning, she's crying. Wailing in fact. To someone who doesn't know her, they would be panicked and on their way to a hospital but somehow I know it isn't serious. I've heard this kind of cry before. She can't tell me what it is exactly but I sense it's something internal so I massage her trunk. My voice is soothing letting her know it will be okay in a few minutes. Then I pick her up to take her to the potty where she still sits and sits and sits and sits and nothing happens.
So I give her a quick bath, dress her, and bring her out for breakfast. She's smiling again. Slurping again. And if she could talk I know what she would be asking for this morning. It would be one of the 5 leftover slices of cheesecake from her birthday.
Elisabeth is 14 today. And it smells like teen spirit.
Elisabeth enjoying her special day
Tuesday, June 17, 2008
Rhetorical Question
Elisabeth's birthday is coming up. It's so hard finding presents that are suitable for her. We've made a lot of our stuff over the years, but she's going on 14 and it's not that easy anymore.
EVERYTHING so expensive for our kids. And the toys that we think might be developmentally appropriate are not age appropriate.
A fiber optics plastic tubing kit is over $4000.00. Does anyone know how cool this toy is for our kids? Fiber optics in our kid's hands give them at least an hour of total pleasure. And it's therapeutic, too; helping them develop fine motor abilities, cause and effect, etc. Also with this group of toys was listed a wonderful light and sound board that kids can manipulate by touch and it's about $7,000.
Hello??? Is anyone listening here?
My guess is that if one of those cheap hand held virtual pets were specially adapted for our children, it would cost around $4000.00 for them instead of what it costs for typical developing kids. Just a guess.
It's not just because everything is expensive. It's been that way since she was born. Listed in several special toy/equipment catalogs are the following:
A bubble making machine is listed as $85.00 ... fortunately Elisabeth's auntie found one for $5.oo at Target.
Disco light ball is listed as $75.00. I found one at Walgreens for $3.99 on sale.
Hand-held sensory stimulation vibrating toys are listed over $100.00. Again, in Walgreens I found one for $3.99 or 2/5.00.
A simple seat pad that connects to her gait trainer is over $500.00 ... a trip to JoAnn Fabrics and we're rigging one up for under $30.00
Weight cuffs and ankles $18.00 each???
Floor Bowling Alley for $500? (This include the same plastic pins you can get at ToysRus for under $10.00. So what is it that costs $490.00? A plastic ball with three holes that my kid can't use?)
Platform and seat swings over $2,000 dollars????
Adapted bicycles over $2,000?
I've gotten a few of the switch toys over the years: Climbing fireman that is now broken, crowing rooster, roller coaster penguins, moving school bus, giraffe with moving neck, dog that flips but most of them are worn out or broken. She has the switch operated pottery wheel but that never worked right.
Her most favorite things are the chain drapery with mirror, fish tank, tomi ball, flexi ball, spongie ball, spikey ball ... hmmmmm ... koosh ball ... she has all the bubble tubes that light up when she hits the switch but she doesn't show any interest in that stuff anymore.
She has a collection of stuff that she made at school: tornado in a bottle, squishy things to touch, textured board, lava lamps, fiber optics fountains ... hmmmmmmm.
She loves ribbons, fabrics, and anything she can put into her mouth but we're trying to get her out of that oral motor stage using her hands for other stuff instead of CONSTANTLY stroking her tongue.
We're out of ideas.
Got any?
EVERYTHING so expensive for our kids. And the toys that we think might be developmentally appropriate are not age appropriate.
A fiber optics plastic tubing kit is over $4000.00. Does anyone know how cool this toy is for our kids? Fiber optics in our kid's hands give them at least an hour of total pleasure. And it's therapeutic, too; helping them develop fine motor abilities, cause and effect, etc. Also with this group of toys was listed a wonderful light and sound board that kids can manipulate by touch and it's about $7,000.
Hello??? Is anyone listening here?
My guess is that if one of those cheap hand held virtual pets were specially adapted for our children, it would cost around $4000.00 for them instead of what it costs for typical developing kids. Just a guess.
It's not just because everything is expensive. It's been that way since she was born. Listed in several special toy/equipment catalogs are the following:
A bubble making machine is listed as $85.00 ... fortunately Elisabeth's auntie found one for $5.oo at Target.
Disco light ball is listed as $75.00. I found one at Walgreens for $3.99 on sale.
Hand-held sensory stimulation vibrating toys are listed over $100.00. Again, in Walgreens I found one for $3.99 or 2/5.00.
A simple seat pad that connects to her gait trainer is over $500.00 ... a trip to JoAnn Fabrics and we're rigging one up for under $30.00
Weight cuffs and ankles $18.00 each???
Floor Bowling Alley for $500? (This include the same plastic pins you can get at ToysRus for under $10.00. So what is it that costs $490.00? A plastic ball with three holes that my kid can't use?)
Platform and seat swings over $2,000 dollars????
Adapted bicycles over $2,000?
I've gotten a few of the switch toys over the years: Climbing fireman that is now broken, crowing rooster, roller coaster penguins, moving school bus, giraffe with moving neck, dog that flips but most of them are worn out or broken. She has the switch operated pottery wheel but that never worked right.
Her most favorite things are the chain drapery with mirror, fish tank, tomi ball, flexi ball, spongie ball, spikey ball ... hmmmmm ... koosh ball ... she has all the bubble tubes that light up when she hits the switch but she doesn't show any interest in that stuff anymore.
She has a collection of stuff that she made at school: tornado in a bottle, squishy things to touch, textured board, lava lamps, fiber optics fountains ... hmmmmmmm.
She loves ribbons, fabrics, and anything she can put into her mouth but we're trying to get her out of that oral motor stage using her hands for other stuff instead of CONSTANTLY stroking her tongue.
We're out of ideas.
Got any?
Friday, June 13, 2008
Wake Up Maggie I Think I've Got Something to Say To You ...
"Perhaps more than any other adviser, Ms. Spellings helped shape the Bush education philosophy: a strict emphasis on standards and accountability, intended to close the “achievement gap” between black and white, rich and poor. While other Republicans talked of dismantling the federal Department of Education, Mr. Bush cast education as a civil rights issue, challenging “the soft bigotry of low expectations.”- taken from a recent article written by Sheryl Gay Stolberg in the New York Times
Even though Margaret Spellings, NCLB czarina, is far from admitting it, No Child Left Behind legislation is a disaster in Ohio. All it did was create an illusion that academic standards and graduation goals were being met by hiding the failures in charter schools, grossly manipulated statistics, and "certificates of completion."
In Ohio, we learned that kids who cannot pass proficiency were warehoused in for-profit charter or contracted school environments operating as for profit. There at the warehouse, the kids are not required to take the proficiency tests so they are entirely missing from the statistics suggesting Ohio students are doing better. Instead they learned how to organize their time, learn about manners, and learn how to play basketball. To make the "drop out" rate go down, kids who are not eligible to receive a diploma are given a "certificates of completion" which qualifies them for one thing -- to serve in the armed forces.
In many school districts right now, contracts that guarantee testing success are offered to schools that are designed to help students "prepare" for the tests. In every school in Ohio, teachers take a detour from their regular classroom responsibilities so kids can log onto computer programs for a few weeks that give similar "test questions" so the kids will know the answers beforehand.
There are still no real statistics that support No Child Left Behind is actually narrowing the disparity between "black and white" and the "rich and poor." The only thing it has done is create an illusion of statistics that were easily manipulated to hide the disparity. We can't put an education template over a large population of children with varying learning styles and preferences.
If you look at the number of kids who are homeschooled or enrolled in public or private school vs. the number of kids who are school age, there's a whole bunch of kids missing in Ohio! Kind of ironic, isn't it?
Special Education News Updates
Click here to keep updated about NCLB, IDEA, FAPE, and other legislatives that prevent or promote special education opportunities for your child.
Thursday, June 12, 2008
Because You Made It So ...
"If you wish to believe [that memory and imagination are components of history], do so with the knowledge that nothing is absolutely true nor is it untrue until someone has made it so." Elizabeth Cook-Lynn
In Memory of Harriet McBryde Johnson
"... because you made it so..."
One February a few years back, Harriet McBryde Johnson wrote an article, "Unspeakable Conversations," about our need to educate each other how disability labels devalue "existence" for our children who are tagged with one. She defended our child's right to be who they are, with or without a disability.
As I was re-reading through her article today, I remember that it was also the same February I was writing about my own frustration with being unable to articulate my concern for my daughter's future. The "advocate" label was wearing thin on me. I was losing hope. I asked, what kind of world was I leaving her to?
I feared I was leaving her to a world that still sees her as an object of pity if they see anything at all. A world that continues to see her "being" as only an afterthought. A world where she must wait for people who don't even acknowledge her existence until it's time to fill out the paperwork or change her diaper or feed her.
I had hoped to send a universal message of appreciation and thanks that February to anyone out there who had ever helped another person connect to their own humanity. To anyone who ever gave damn about our children's "being."
I'm glad that Harriet got the message.
Ms. McBryde Johnson's article "Unspeakable Conversations" is linked by clicking HERE.
In Memory of Harriet McBryde Johnson
"... because you made it so..."
One February a few years back, Harriet McBryde Johnson wrote an article, "Unspeakable Conversations," about our need to educate each other how disability labels devalue "existence" for our children who are tagged with one. She defended our child's right to be who they are, with or without a disability.
As I was re-reading through her article today, I remember that it was also the same February I was writing about my own frustration with being unable to articulate my concern for my daughter's future. The "advocate" label was wearing thin on me. I was losing hope. I asked, what kind of world was I leaving her to?
I feared I was leaving her to a world that still sees her as an object of pity if they see anything at all. A world that continues to see her "being" as only an afterthought. A world where she must wait for people who don't even acknowledge her existence until it's time to fill out the paperwork or change her diaper or feed her.
I had hoped to send a universal message of appreciation and thanks that February to anyone out there who had ever helped another person connect to their own humanity. To anyone who ever gave damn about our children's "being."
I'm glad that Harriet got the message.
Ms. McBryde Johnson's article "Unspeakable Conversations" is linked by clicking HERE.
Voluntary Self-Commitment
I caught this editorial this morning and was saddened to hear that Harriet McBryde Johnson passed away June 4, 2008. She was a woman who wrote extensively about the parallel worlds created by the abled for those who are labeled disabled.
Harriet's words provided inspiration for me when I was feeling gloomy about the future prospects for my daughter. I would re-read her articles and book for strength and inspiration to refocus on whatever the issue was at hand.
Most of the time, it was her words I would cling to when I felt I was losing my grip on reality over the changes in legislation and how it would impact my daughter's future. Or how it wouldn't affect her at all.
If you click on the title above, you'll be linked to the "Disability Gulag" article she wrote advocating for home health care instead of institutionalizing people through "voluntary self-commitment" which is the catch 22 of all time.
Here is the editorial as it was printed in the New York Times today:
A Life of Quality
By LAWRENCE DOWNES
Published: June 12, 2008
In “Parting the Waters,” his history of the early civil-rights movement, Taylor Branch recounts how a teacher of Gandhian resistance, James Lawson, would tell his students not to curl passively into fetal balls when segregationists came to beat them up. It only made them more brutal.
“This was a way to get livers kicked in and backs broken, he said, recommending that resisters try to maintain eye contact with those beating them.”
I thought of that when I learned of the death of Harriet McBryde Johnson, who looked at the world with an unflinching, sometimes withering, gaze. What many saw when they looked at her was a scrawny woman with a twisted spine who got around with a power wheelchair and lots of help. What she saw was a world that refused to make room for the severely disabled, one that looked at people like her — if it looked at them at all — with horror, hostility, condescension and pity, a sentiment she hated.
Ms. Johnson, a lawyer who was 50, died on June 4. She was an eloquent defender of the rights of the disabled. She came to wide attention through The New York Times Magazine, in essays she wrote about her confrontations with the philosopher Peter Singer over his defense of killing disabled infants at birth.
Ms. Johnson, an atheist, was unmoved by religious appeals to life’s sanctity. Instead, her rebuttal boiled down to a simple: How dare you? How dare you decide that certain people with limitations are nonpersons with no right to exist? How dare you presume to define “quality of life,” for me or anyone else, to set the value of a disabled life lower than yours, or to conclude that such a life lacks the potential for happiness and dignity because you cannot imagine how it could?
The disabled certainly suffer. But everyone does, Ms. Johnson argued, and if the disabled face extra hassles and indignities in life, well, remedies for those things are all possible, and should be provided. Instead, the world is run by and for the nondisabled, and those who don’t measure up are infantilized, ignored and stockpiled in institutions that Ms. Johnson called “the disability gulag.” She feared being sent to it in her later years.
Ms. Johnson was enraged by injustice, but not susceptible to hatred or despair. To her, Mr. Singer was a monster, but she realized that the unenlightened also included many of her own friends, colleagues and relatives. She decided that “it’s not in my heart to deny every single one of them, categorically, my affection and my love.”
Harriet's words provided inspiration for me when I was feeling gloomy about the future prospects for my daughter. I would re-read her articles and book for strength and inspiration to refocus on whatever the issue was at hand.
Most of the time, it was her words I would cling to when I felt I was losing my grip on reality over the changes in legislation and how it would impact my daughter's future. Or how it wouldn't affect her at all.
If you click on the title above, you'll be linked to the "Disability Gulag" article she wrote advocating for home health care instead of institutionalizing people through "voluntary self-commitment" which is the catch 22 of all time.
Here is the editorial as it was printed in the New York Times today:
A Life of Quality
By LAWRENCE DOWNES
Published: June 12, 2008
In “Parting the Waters,” his history of the early civil-rights movement, Taylor Branch recounts how a teacher of Gandhian resistance, James Lawson, would tell his students not to curl passively into fetal balls when segregationists came to beat them up. It only made them more brutal.
“This was a way to get livers kicked in and backs broken, he said, recommending that resisters try to maintain eye contact with those beating them.”
I thought of that when I learned of the death of Harriet McBryde Johnson, who looked at the world with an unflinching, sometimes withering, gaze. What many saw when they looked at her was a scrawny woman with a twisted spine who got around with a power wheelchair and lots of help. What she saw was a world that refused to make room for the severely disabled, one that looked at people like her — if it looked at them at all — with horror, hostility, condescension and pity, a sentiment she hated.
Ms. Johnson, a lawyer who was 50, died on June 4. She was an eloquent defender of the rights of the disabled. She came to wide attention through The New York Times Magazine, in essays she wrote about her confrontations with the philosopher Peter Singer over his defense of killing disabled infants at birth.
Ms. Johnson, an atheist, was unmoved by religious appeals to life’s sanctity. Instead, her rebuttal boiled down to a simple: How dare you? How dare you decide that certain people with limitations are nonpersons with no right to exist? How dare you presume to define “quality of life,” for me or anyone else, to set the value of a disabled life lower than yours, or to conclude that such a life lacks the potential for happiness and dignity because you cannot imagine how it could?
The disabled certainly suffer. But everyone does, Ms. Johnson argued, and if the disabled face extra hassles and indignities in life, well, remedies for those things are all possible, and should be provided. Instead, the world is run by and for the nondisabled, and those who don’t measure up are infantilized, ignored and stockpiled in institutions that Ms. Johnson called “the disability gulag.” She feared being sent to it in her later years.
Ms. Johnson was enraged by injustice, but not susceptible to hatred or despair. To her, Mr. Singer was a monster, but she realized that the unenlightened also included many of her own friends, colleagues and relatives. She decided that “it’s not in my heart to deny every single one of them, categorically, my affection and my love.”
Thursday, May 29, 2008
Child Voted Out of Class
Click on the title above to read the story.
It really makes me sad to read stuff like this. We don't know the first thing about mainstreaming, do we?
A few weeks ago, during my daughter's choral concert, one of the girl members who is developmentally delayed was singing off key and people were laughing at her. Evidently they thought it was so funny that she couldn't keep up with the rest of the group so they pointed out her disability even more by laughing at her attempt for wanting to be part of the group. They were laughing at her for wanting to be included.
Is this what mainstreaming is all about? To be included only if people can laugh at you when you don't measure up? When you're trying to fit in? Or in this little boy's case, to be voted "off the island" because he didn't behave like the rest of the people who live "on the island?"
It really makes me sad to read stuff like this. We don't know the first thing about mainstreaming, do we?
A few weeks ago, during my daughter's choral concert, one of the girl members who is developmentally delayed was singing off key and people were laughing at her. Evidently they thought it was so funny that she couldn't keep up with the rest of the group so they pointed out her disability even more by laughing at her attempt for wanting to be part of the group. They were laughing at her for wanting to be included.
Is this what mainstreaming is all about? To be included only if people can laugh at you when you don't measure up? When you're trying to fit in? Or in this little boy's case, to be voted "off the island" because he didn't behave like the rest of the people who live "on the island?"
Friday, May 23, 2008
Wheelchair Navigation
I'm keeping a list of destinations and locations that go beyond our expectations in regards to wheelchair accessibility. I also have a list of places that have fallen short of our expectations making our experiences on a family outing go from enjoyable to frustrating.
I'd like to start with a few places in Cincinnati that do a great job.
Of course the Zoo, Cincinnati Museum Center, Freedom Center, Coney Island, and Kings Island do a great job even when you don't call them in advance. They are prepared. Stadium Parking is great if you can find the wheelchair parking that isn't filled. Paul Brown has parking right in front arrive early or call in advance. The Great American Ballpark has a different "accessible" entrance that faces the river. You'll see everyone going into the front door but if you have a wheelchair, you'll be directed around to go the other entrance. It takes a while so if you're running late, add another 15 minutes to get to your seats.
Cintas Center, (XU) is a complete disaster. Basically, you have to drop the person off at a special "handicap" entrance and go park your car because there is a moat of levels and stairs that separate the sea of parking and the facility. If the event is on the other side, good luck.
Taft Museum's only designated wheelchair parking is on slope and there is no room for a lift. To visit the Art Museum, you have to use the back entrance. Good luck finding a parking spot near the back entrance!
At Music Hall, park in front only on Elm Street. Don't use the garages or parking anywhere on Central Parkway or near WCET. Navigation from there is a nightmare.
Good luck finding decent parking downtown Cincinnati because Fountain Square Parking is a disaster and very dangerous. The wheelchair curbs and elevators are not anywhere near the wheelchair parking. If you have children with you, it doubly dangerous. There is a blind spot corner in direct traffic to access the elevators. So if you're in a wheelchair, you're expected to go in the direct path of incoming cars to get to the elevators.
If it's raining, you can't use the Kentucky Indoor Parking lot at the Visitors and Convention Bureau because it's too low for big vans transporting a wheelchair. You'll have to park outside in a front parking lot that also doesn't have wheelchair curbs that take you directly to the building. You have to go a block and use the ramp there while everyone else can cross directly.
I'd like to start with a few places in Cincinnati that do a great job.
Of course the Zoo, Cincinnati Museum Center, Freedom Center, Coney Island, and Kings Island do a great job even when you don't call them in advance. They are prepared. Stadium Parking is great if you can find the wheelchair parking that isn't filled. Paul Brown has parking right in front arrive early or call in advance. The Great American Ballpark has a different "accessible" entrance that faces the river. You'll see everyone going into the front door but if you have a wheelchair, you'll be directed around to go the other entrance. It takes a while so if you're running late, add another 15 minutes to get to your seats.
Cintas Center, (XU) is a complete disaster. Basically, you have to drop the person off at a special "handicap" entrance and go park your car because there is a moat of levels and stairs that separate the sea of parking and the facility. If the event is on the other side, good luck.
Taft Museum's only designated wheelchair parking is on slope and there is no room for a lift. To visit the Art Museum, you have to use the back entrance. Good luck finding a parking spot near the back entrance!
At Music Hall, park in front only on Elm Street. Don't use the garages or parking anywhere on Central Parkway or near WCET. Navigation from there is a nightmare.
Good luck finding decent parking downtown Cincinnati because Fountain Square Parking is a disaster and very dangerous. The wheelchair curbs and elevators are not anywhere near the wheelchair parking. If you have children with you, it doubly dangerous. There is a blind spot corner in direct traffic to access the elevators. So if you're in a wheelchair, you're expected to go in the direct path of incoming cars to get to the elevators.
If it's raining, you can't use the Kentucky Indoor Parking lot at the Visitors and Convention Bureau because it's too low for big vans transporting a wheelchair. You'll have to park outside in a front parking lot that also doesn't have wheelchair curbs that take you directly to the building. You have to go a block and use the ramp there while everyone else can cross directly.
Thursday, May 22, 2008
Autism: Specialized Schools vs. Mainstream Schools?
Mainstreaming into community through classroom doors works for some, but not for others. When a disability label is too big to put on jar, maybe schools need to rethink the "mainstream packaging" and be open to other options for children with special needs.
Parents of Disabled Students
Push for Separate Classes
By ROBERT TOMSHO
November 27, 2007; Page A1
NEW BRUNSWICK, N.J. -- Last fall, groups who favor placing disabled students in regular classrooms faced opposition from an unlikely quarter: parents like Norette Travis, whose daughter Valerie has autism.
Valerie had already tried the mainstreaming approach that the disability-advocacy groups were supporting. After attending a preschool program for special-needs students, she was assigned to a regular kindergarten class. But there, her mother says, she disrupted class, ran through the hallways and lashed out at others -- at one point giving a teacher a black eye.
"She did not learn anything that year," Ms. Travis recalls. "She regressed."
As policy makers push to include more special-education students into general classrooms, factions are increasingly divided. Advocates for the disabled say special-education students benefit both academically and socially by being taught alongside typical students. Legislators often side with them, arguing that mainstreaming is productive for students and cost-effective for taxpayers.
'Fully Included'
In 2005, more than half of all special-education students were considered mainstreamed, or "fully included," nationally. These students spent 80% or more of the school day in regular classrooms, up from about a third in 1990, according to the U.S. Department of Education.
"The burden is on school districts and states to give strong justification for why a child or group of children cannot be integrated," says Thomas Hehir, an education professor at Harvard and former director of special education at the U.S. Department of Education.
That point of view frustrates many parents. Some have struggled to get services from their local school districts; others have seen their disabled children falter in integrated settings.
Mary Kaplowitz, a special-education teacher in Kingston, Pa., was a bigger supporter of mainstreaming before she had her son, Zachary, who has autism and is mildly retarded. She says his preschool classmates rarely played with him and he came home from summer camp asking why the nondisabled children laughed at him. On a visit, she saw them drawing away from her son.
"They shunned him and it broke my heart," says Ms. Kaplowitz. Earlier this year, she and other parents fought successfully to preserve separate special-education classes in Kingston like the one Zachary, now 9 years old, attends at a local elementary school.
Such parental pushback has prompted local school districts across the country to delay or downsize mainstreaming initiatives.
Last year, parents of disabled kids in Walworth County, Wis., clashed with an advocacy group over the creation of a new special-education school. As part of the battle, Disability Rights Wisconsin sued the county in Milwaukee federal court to try to block the school. The new school is currently under construction and the lawsuit is under appeal.
And earlier this year, parents in Maryland's Montgomery County asked the state to continue a special-education program their school district was scheduled to discontinue. After initial protests, the district agreed to phase out the program -- letting enrolled kids continue -- rather than close it outright.
The debate has grown contentious in New Jersey, a state with a strong tradition of separate education for the disabled. Only about 41% of the state's 230,000 special-education students are deemed fully included, compared with 54% nationwide. About 9% of the state's disabled students -- triple the national average -- attend separate schools.
New Jersey passed some of the nation's first special-education laws. In the 1950s, it began requiring public schools to pay for special-ed services that they didn't offer. State law also gave counties and groups of school districts broad powers to build stand-alone schools for the disabled. Today, there are 80 publicly funded separate schools for the disabled in New Jersey and about 175 private ones. They receive tuition from public districts for handling special-ed students.
But in 2004, the state, which had faced federal pressure to mainstream, placed a year-long moratorium on the opening of new special-education schools. Since then, it has stiffened the approval process for private facilities and bolstered funding for local districts to broaden in-house programs.
In a budget-strapped state where voters have been demanding tax relief, cost has been a factor. On average, New Jersey spends about $16,100 a year on each special-education student, including those who are mainstreamed. The average annual tuition at the various, separate public schools for the disabled range from $28,500 to $42,000; at private schools, it's $44,000.
Overall, tuition and transportation costs for out-of-district placements accounted for 39% of the $3.3 billion a year that the state spends on special education. "That's a huge cost driver for our education budget," says state Sen. John Adler, who last year co-chaired hearings on school funding reform.
Many parents, including state Sen. Stephen Sweeney, bristle at moves that could foreclose their options. His daughter, Lauren, who has Down syndrome, attends a regular middle school. But Mr. Sweeney says her nondisabled classmates never visit or ask her to hang out. Next year, he's moving Lauren to a separate high school operated by the publicly funded Gloucester County Special Services School District. The system's special-education facilities also include a new $14 million school for children with autism and multiple disabilities.
'The Choice of Parents'
"Just to put my child in a building to make people feel better because it's inclusion is outrageous," says Mr. Sweeney. "As long as I am in the legislature, they are not going to take away the choice of parents with children with disabilities."
The school funding hearings, held in various towns and cities last fall, were emotional. Ruth Lowenkron, a special-education attorney, testified that beyond being the right thing to do, mainstreaming would save money. "Repeat after me," she told the legislators, "inclusion is cheaper than segregation."
But the panel also heard often from parents who argued for continued access to separate schools.
They included Adela Maria Bolet, of Teaneck, N.J., whose suit-clad son, Michael, sat beside his mother while she testified. The 17-year-old, who has Down syndrome, now attends a private high school on the state's tab. In earlier years, Ms. Bolet fought to get Michael into regular public schools only to find that he sometimes became depressed and had little positive interaction with nondisabled peers.
Until high school, he had few friends, says Ms. Bolet. Her voice still quivers when she talks about what happened when the family rented a pool in town and invited classmates from Michael's neighborhood elementary school to a swimming party for his 13th birthday. "Nobody came," she says.
Concurrent with the funding hearings, another debate was boiling at New Jersey's publicly funded Middlesex Regional Education Services Commission. It had already supported and built a network of six special-education schools, and planned to open two more, including a 24-classroom facility. The commission, controlled by a consortium of school districts, had built its other schools using bonds guaranteed by Middlesex County's governing board. Its school projects had never faced significant opposition.
This time was different, as the proposed schools became a target for mainstreaming advocates. Critics like William England, a school board member in South River, N.J., wrote to local papers. To endorse the sort of segregated special-education schools that most of the country is busy abandoning would be "a waste of county resources," he said in a letter to the Home News Tribune, East Brunswick, N.J.
Mark Finkelstein, the Middlesex commission's superintendent, scoffs at such criticism. He estimates his schools save local districts $10 million a year over the cost of placement in privately owned facilities. "It's easy to say that all kids should be in mainstream schools but let's talk reality," he says.
On a recent morning at the Bright Beginnings Learning Center -- one of the Middlesex schools -- a hallway painted mint-green was lined with children's wheelchairs and walkers. In one classroom, a teacher and four aides were working with seven disabled students, most strapped into devices designed to help them stand or sit.
Mary Lou Walker, an aide, crouched beside the desk of Teresa Condora, a petite 7-year-old who suffers from cerebral palsy and is largely nonverbal. "All right T, come on," Ms. Walker said, gently urging the girl to press a big red plastic button attached to a buzzer. Responding with a soft moan, Teresa pushed against the button as though it were impossibly heavy.
Factions Face Off
Last September, pro- and anti-mainstreaming factions faced off at a meeting where the fate of the proposed new Middlesex schools was to be decided.
At the microphone that evening, Paula Lieb, president of the New Jersey Coalition for Inclusive Education, cited multiple examples of severely disabled children who had been successfully mainstreamed. She said that "the vast majority of children can be included in the public schools."
But the parents of children already attending the commission's schools had also been organizing, urging each other to come to the hearing and bring their disabled children.
Sandy Epstein's family had moved to New Jersey from Oregon a decade earlier to take advantage of specialized schools for students like her son, Brandon, who has autism. For the hearing, the 48-year-old homemaker dressed her teenager in a bright red polo shirt and sat near the front. "I wanted him to stand out," she says. "I wanted these politicians to see what we are talking about."
Ms. Travis, a 41-year-old bookkeeper from Milltown, N.J., says that while waiting to speak that night, she grew angry with the criticisms of the inclusion advocates. She thought they had no idea what her daughter Valerie, now 11, needed.
The Travises had spent eight months on a waiting list to get Valerie into the Academy Learning Center, one of the Middlesex schools located in Monroe Township, N.J.
During that time, she says, the progress Valerie had made learning to speak all but disappeared. Along with reports of her outbursts at school, Ms. Travis says the family had to cope with frequent meltdowns at home. Valerie slept fitfully, ripped up her homework and beat up her little brother to the point that he once needed stitches.
"It was the worst eight months of our lives," Ms. Travis told the county officials, adding that families like hers needed schools like the Academy, where Valerie is now learning geography and double-digit subtraction.
Mr. Finkelstein believes parents' testimony helped convince county officials to unanimously back the bonds needed for the new construction, which is under way.
"If inclusion worked for all of our residents," the superintendent says, "they wouldn't be fighting so hard for these new schools."
Their efforts are far from over. In June, a coalition of disability-rights groups sued the New Jersey education department in U.S. District Court in Newark. Taking a page from the racial desegregation battles of the 1960s, it alleges the department isn't moving fast enough to integrate disabled students and asks the federal court to take over the process.
Parents of Disabled Students
Push for Separate Classes
By ROBERT TOMSHO
November 27, 2007; Page A1
NEW BRUNSWICK, N.J. -- Last fall, groups who favor placing disabled students in regular classrooms faced opposition from an unlikely quarter: parents like Norette Travis, whose daughter Valerie has autism.
Valerie had already tried the mainstreaming approach that the disability-advocacy groups were supporting. After attending a preschool program for special-needs students, she was assigned to a regular kindergarten class. But there, her mother says, she disrupted class, ran through the hallways and lashed out at others -- at one point giving a teacher a black eye.
"She did not learn anything that year," Ms. Travis recalls. "She regressed."
As policy makers push to include more special-education students into general classrooms, factions are increasingly divided. Advocates for the disabled say special-education students benefit both academically and socially by being taught alongside typical students. Legislators often side with them, arguing that mainstreaming is productive for students and cost-effective for taxpayers.
'Fully Included'
In 2005, more than half of all special-education students were considered mainstreamed, or "fully included," nationally. These students spent 80% or more of the school day in regular classrooms, up from about a third in 1990, according to the U.S. Department of Education.
"The burden is on school districts and states to give strong justification for why a child or group of children cannot be integrated," says Thomas Hehir, an education professor at Harvard and former director of special education at the U.S. Department of Education.
That point of view frustrates many parents. Some have struggled to get services from their local school districts; others have seen their disabled children falter in integrated settings.
Mary Kaplowitz, a special-education teacher in Kingston, Pa., was a bigger supporter of mainstreaming before she had her son, Zachary, who has autism and is mildly retarded. She says his preschool classmates rarely played with him and he came home from summer camp asking why the nondisabled children laughed at him. On a visit, she saw them drawing away from her son.
"They shunned him and it broke my heart," says Ms. Kaplowitz. Earlier this year, she and other parents fought successfully to preserve separate special-education classes in Kingston like the one Zachary, now 9 years old, attends at a local elementary school.
Such parental pushback has prompted local school districts across the country to delay or downsize mainstreaming initiatives.
Last year, parents of disabled kids in Walworth County, Wis., clashed with an advocacy group over the creation of a new special-education school. As part of the battle, Disability Rights Wisconsin sued the county in Milwaukee federal court to try to block the school. The new school is currently under construction and the lawsuit is under appeal.
And earlier this year, parents in Maryland's Montgomery County asked the state to continue a special-education program their school district was scheduled to discontinue. After initial protests, the district agreed to phase out the program -- letting enrolled kids continue -- rather than close it outright.
The debate has grown contentious in New Jersey, a state with a strong tradition of separate education for the disabled. Only about 41% of the state's 230,000 special-education students are deemed fully included, compared with 54% nationwide. About 9% of the state's disabled students -- triple the national average -- attend separate schools.
New Jersey passed some of the nation's first special-education laws. In the 1950s, it began requiring public schools to pay for special-ed services that they didn't offer. State law also gave counties and groups of school districts broad powers to build stand-alone schools for the disabled. Today, there are 80 publicly funded separate schools for the disabled in New Jersey and about 175 private ones. They receive tuition from public districts for handling special-ed students.
But in 2004, the state, which had faced federal pressure to mainstream, placed a year-long moratorium on the opening of new special-education schools. Since then, it has stiffened the approval process for private facilities and bolstered funding for local districts to broaden in-house programs.
In a budget-strapped state where voters have been demanding tax relief, cost has been a factor. On average, New Jersey spends about $16,100 a year on each special-education student, including those who are mainstreamed. The average annual tuition at the various, separate public schools for the disabled range from $28,500 to $42,000; at private schools, it's $44,000.
Overall, tuition and transportation costs for out-of-district placements accounted for 39% of the $3.3 billion a year that the state spends on special education. "That's a huge cost driver for our education budget," says state Sen. John Adler, who last year co-chaired hearings on school funding reform.
Many parents, including state Sen. Stephen Sweeney, bristle at moves that could foreclose their options. His daughter, Lauren, who has Down syndrome, attends a regular middle school. But Mr. Sweeney says her nondisabled classmates never visit or ask her to hang out. Next year, he's moving Lauren to a separate high school operated by the publicly funded Gloucester County Special Services School District. The system's special-education facilities also include a new $14 million school for children with autism and multiple disabilities.
'The Choice of Parents'
"Just to put my child in a building to make people feel better because it's inclusion is outrageous," says Mr. Sweeney. "As long as I am in the legislature, they are not going to take away the choice of parents with children with disabilities."
The school funding hearings, held in various towns and cities last fall, were emotional. Ruth Lowenkron, a special-education attorney, testified that beyond being the right thing to do, mainstreaming would save money. "Repeat after me," she told the legislators, "inclusion is cheaper than segregation."
But the panel also heard often from parents who argued for continued access to separate schools.
They included Adela Maria Bolet, of Teaneck, N.J., whose suit-clad son, Michael, sat beside his mother while she testified. The 17-year-old, who has Down syndrome, now attends a private high school on the state's tab. In earlier years, Ms. Bolet fought to get Michael into regular public schools only to find that he sometimes became depressed and had little positive interaction with nondisabled peers.
Until high school, he had few friends, says Ms. Bolet. Her voice still quivers when she talks about what happened when the family rented a pool in town and invited classmates from Michael's neighborhood elementary school to a swimming party for his 13th birthday. "Nobody came," she says.
Concurrent with the funding hearings, another debate was boiling at New Jersey's publicly funded Middlesex Regional Education Services Commission. It had already supported and built a network of six special-education schools, and planned to open two more, including a 24-classroom facility. The commission, controlled by a consortium of school districts, had built its other schools using bonds guaranteed by Middlesex County's governing board. Its school projects had never faced significant opposition.
This time was different, as the proposed schools became a target for mainstreaming advocates. Critics like William England, a school board member in South River, N.J., wrote to local papers. To endorse the sort of segregated special-education schools that most of the country is busy abandoning would be "a waste of county resources," he said in a letter to the Home News Tribune, East Brunswick, N.J.
Mark Finkelstein, the Middlesex commission's superintendent, scoffs at such criticism. He estimates his schools save local districts $10 million a year over the cost of placement in privately owned facilities. "It's easy to say that all kids should be in mainstream schools but let's talk reality," he says.
On a recent morning at the Bright Beginnings Learning Center -- one of the Middlesex schools -- a hallway painted mint-green was lined with children's wheelchairs and walkers. In one classroom, a teacher and four aides were working with seven disabled students, most strapped into devices designed to help them stand or sit.
Mary Lou Walker, an aide, crouched beside the desk of Teresa Condora, a petite 7-year-old who suffers from cerebral palsy and is largely nonverbal. "All right T, come on," Ms. Walker said, gently urging the girl to press a big red plastic button attached to a buzzer. Responding with a soft moan, Teresa pushed against the button as though it were impossibly heavy.
Factions Face Off
Last September, pro- and anti-mainstreaming factions faced off at a meeting where the fate of the proposed new Middlesex schools was to be decided.
At the microphone that evening, Paula Lieb, president of the New Jersey Coalition for Inclusive Education, cited multiple examples of severely disabled children who had been successfully mainstreamed. She said that "the vast majority of children can be included in the public schools."
But the parents of children already attending the commission's schools had also been organizing, urging each other to come to the hearing and bring their disabled children.
Sandy Epstein's family had moved to New Jersey from Oregon a decade earlier to take advantage of specialized schools for students like her son, Brandon, who has autism. For the hearing, the 48-year-old homemaker dressed her teenager in a bright red polo shirt and sat near the front. "I wanted him to stand out," she says. "I wanted these politicians to see what we are talking about."
Ms. Travis, a 41-year-old bookkeeper from Milltown, N.J., says that while waiting to speak that night, she grew angry with the criticisms of the inclusion advocates. She thought they had no idea what her daughter Valerie, now 11, needed.
The Travises had spent eight months on a waiting list to get Valerie into the Academy Learning Center, one of the Middlesex schools located in Monroe Township, N.J.
During that time, she says, the progress Valerie had made learning to speak all but disappeared. Along with reports of her outbursts at school, Ms. Travis says the family had to cope with frequent meltdowns at home. Valerie slept fitfully, ripped up her homework and beat up her little brother to the point that he once needed stitches.
"It was the worst eight months of our lives," Ms. Travis told the county officials, adding that families like hers needed schools like the Academy, where Valerie is now learning geography and double-digit subtraction.
Mr. Finkelstein believes parents' testimony helped convince county officials to unanimously back the bonds needed for the new construction, which is under way.
"If inclusion worked for all of our residents," the superintendent says, "they wouldn't be fighting so hard for these new schools."
Their efforts are far from over. In June, a coalition of disability-rights groups sued the New Jersey education department in U.S. District Court in Newark. Taking a page from the racial desegregation battles of the 1960s, it alleges the department isn't moving fast enough to integrate disabled students and asks the federal court to take over the process.
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