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.
Thursday, July 10, 2008
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.
COFFEE BREAK FOR ARTISTIC MOMS
Did I say "artistic?"
Oh ... I'm sorry, I meant AUTISTIC.
For all of us Midwestern folk who are not waiting around for the world to end in ten years, click on my title "Coffee Break for Artistic Moms" for a special read ...
Oh ... I'm sorry, I meant AUTISTIC.
For all of us Midwestern folk who are not waiting around for the world to end in ten years, click on my title "Coffee Break for Artistic Moms" for a special read ...
Wednesday, May 21, 2008
Inclusion Delusion Exclusion
My 12 year old went to Starbucks yesterday for a field trip. It was an opportunity arranged by a very creative special education teacher who seeks out multisensory opportunities within the community for her students who follow a very different pattern of physical and emotional development.
Her student's lips and tongues felt the steam of warm milk and their nose absorbed the aroma of vanilla, chocolate, and hazelnut. Their ears were filled with soft music while their eyes gazed upon blurrs of energy created by the sounds and motions unlike their usual environment. Their fingertips touched foamy cream and nutbread.
It is no ordinary school my daughter attends. It is one of the remaining therapy centers supported by voters through the property taxes they elect to pay and the local school districts who can afford to pay. It is a school designed to offer individualized education opportunities for children like my daughter based on their their emerging abilities. It is one of the remaining MR/dd therapy centers throughout Ohio serving children like my daughter who cannot benefit from being in a cognition-driven school environment.
The federal and state government would like to see these therapy centers close forever because instead of seeing opportunity for our children with severe disabilities, they see a pile of money that could be used elsewhere. So they spin the a delusion through legislation and paperwork that district schools can somehow re-create these same opportunities within their own districts. Districts with crowded schools and crippled finances. Districts that cannot pass tax levies to support opportunities for typical developing youth. Schools designed for and driven by cognition, proficiency, and product.
Our US government has gone as far as mandating and enforcing all Ohio school districts to mainstream all the children within their district boundaries without offering additional funding or facilitities or staffing to re-create the environments and related learning opportunties. Mainsteaming driven by economics, not education and certainly not according to the individual child's ability.
The US government has taken a law, the Individuals with Disabilities Education Act established in 1975, and turned it around to be used against the individual. A law that we created to protect the individual rights of a child is now being used by the government giving this child no alternative except for what is offered through their district schools. A law that once protected the individual has become a law protecting the federal government from guarenteeing what rightfully belongs to the child.
The federal and state government has gone as far as creating a system weighted down by paperwork designed to "include" children like my daughter in their district's classroom but in reality exclude our children from the money that was inititially used to support alternative educational opportunities so they can have the same leverage as their biological peers. The paperwork they created signs away the right of the individual to the right of the school district so instead of our kids flying through a window of independence by their own design, they are expected to gain their independence forced through a one size fits all window.
Even more paperwork was created so our children can be removed from the classroom when they become a distraction or when the activity or subject matter goes beyond their ability or skill level instead of providing supplemental tools or adaptive equipment so the children can fully partipate same as their peers. It also excludes our children from learning in an environment designed to meet their individual developing abilities.
It also excludes some schools from providing nothing more for our children than a special ed teacher or specialist who travel from school to school to look in on our children for about 15 minutes a week or half hour twice a month in room with children with varying physical, cognition, and emotional disabilities and disorders. And the money that was once earmarked for our children's alternative opportunties goes into another pocket of the government.
In Ohio, it was the old "bait and switch" used on Ohio voters. A politician claiming he or she can save the voter 8 billion dollars here and there. A politician whose soap box supporting "values" stands in the middle of a dumping ground filled with "government waste. " The "government waste" money once earmarked for the therapy schools is earmarked for something else in government.
It's a scam made possible by eight years of political corruption that started at the federal level by creating the inclusion exclusion delusion.
Her student's lips and tongues felt the steam of warm milk and their nose absorbed the aroma of vanilla, chocolate, and hazelnut. Their ears were filled with soft music while their eyes gazed upon blurrs of energy created by the sounds and motions unlike their usual environment. Their fingertips touched foamy cream and nutbread.
It is no ordinary school my daughter attends. It is one of the remaining therapy centers supported by voters through the property taxes they elect to pay and the local school districts who can afford to pay. It is a school designed to offer individualized education opportunities for children like my daughter based on their their emerging abilities. It is one of the remaining MR/dd therapy centers throughout Ohio serving children like my daughter who cannot benefit from being in a cognition-driven school environment.
The federal and state government would like to see these therapy centers close forever because instead of seeing opportunity for our children with severe disabilities, they see a pile of money that could be used elsewhere. So they spin the a delusion through legislation and paperwork that district schools can somehow re-create these same opportunities within their own districts. Districts with crowded schools and crippled finances. Districts that cannot pass tax levies to support opportunities for typical developing youth. Schools designed for and driven by cognition, proficiency, and product.
Our US government has gone as far as mandating and enforcing all Ohio school districts to mainstream all the children within their district boundaries without offering additional funding or facilitities or staffing to re-create the environments and related learning opportunties. Mainsteaming driven by economics, not education and certainly not according to the individual child's ability.
The US government has taken a law, the Individuals with Disabilities Education Act established in 1975, and turned it around to be used against the individual. A law that we created to protect the individual rights of a child is now being used by the government giving this child no alternative except for what is offered through their district schools. A law that once protected the individual has become a law protecting the federal government from guarenteeing what rightfully belongs to the child.
The federal and state government has gone as far as creating a system weighted down by paperwork designed to "include" children like my daughter in their district's classroom but in reality exclude our children from the money that was inititially used to support alternative educational opportunities so they can have the same leverage as their biological peers. The paperwork they created signs away the right of the individual to the right of the school district so instead of our kids flying through a window of independence by their own design, they are expected to gain their independence forced through a one size fits all window.
Even more paperwork was created so our children can be removed from the classroom when they become a distraction or when the activity or subject matter goes beyond their ability or skill level instead of providing supplemental tools or adaptive equipment so the children can fully partipate same as their peers. It also excludes our children from learning in an environment designed to meet their individual developing abilities.
It also excludes some schools from providing nothing more for our children than a special ed teacher or specialist who travel from school to school to look in on our children for about 15 minutes a week or half hour twice a month in room with children with varying physical, cognition, and emotional disabilities and disorders. And the money that was once earmarked for our children's alternative opportunties goes into another pocket of the government.
In Ohio, it was the old "bait and switch" used on Ohio voters. A politician claiming he or she can save the voter 8 billion dollars here and there. A politician whose soap box supporting "values" stands in the middle of a dumping ground filled with "government waste. " The "government waste" money once earmarked for the therapy schools is earmarked for something else in government.
It's a scam made possible by eight years of political corruption that started at the federal level by creating the inclusion exclusion delusion.
Children's Disabilities Information
Another resource for new parents. Just click on the title above or go here:
http://www.childrensdisabilities.info/articles.html
http://www.childrensdisabilities.info/articles.html
Autism and Fad Treatments
By Jeff Grabmeier
Ohio State University
August 20, 2007
Copyright © 2007 Ohio State University
This article is used with permission from:
The Ohio State University Research News
Ineffective or even dangerous fad treatments for autism, always a problem, seem to be growing more pervasive, according to researchers who studied the problem.
“Developmental disabilities like autism are a magnet for all kinds of unsupported or disproved therapies, and it has gotten worse as more children have been diagnosed with autism,” said James Mulick, professor of pediatrics and psychology at Ohio State University .”
“There's no cure for autism, and many parents are willing to believe anything if they come to think it could help their child.”
"Outrageous Developmental Disabilities Treatments"
Mulick chaired a symposium on “Outrageous Developmental Disabilities Treatments” Aug. 20 in San Francisco at the annual meeting of the American Psychological Association. The symposium included presentations by several of Mulick's students at Ohio State who participated in a graduate seminar on fad treatments in autism.
“We're not saying that all of these treatments don't work or that they are all dangerous,” Kettering said. “But the research hasn't been done to suggest that most of them are effective or even safe.” Many of the treatments may have just enough basis in scientific fact to attract attention, even if the treatment itself is unproven.
Tracy Kettering, a doctoral student in special education at Ohio State , said a Google search for the phrase “autism treatment” yields more than 2.2 million matches.
“You get hundreds of different types of therapies that come up, and many have quotes from parents that claim a particular therapy ‘cured' their child,” Kettering said.
“It's no wonder that parents want to believe. But very few of these treatments have any evidence to support them.”
The number and range of fad treatments has seemed to grow in recent years as more children have been diagnosed with autism, said Mulick, who is also editor of a book on fad treatments called Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice.
Mulick said when he began treating autism in the 1970s about 3 children in 10,000 were said to have autism. Now, reports are 1 in 166 children have the condition. The number of cases has mushroomed because of better diagnoses, and a changing definition of autism that includes a broader range of disorders.
Some of the newer, more popular fad treatments for autism involve special diets or nutritional supplements. Megadoses of Vitamins C and B6 are popular, as well as supplements with fatty acids like omega-3s.
A casein and/or gluten-free diet, which involves eliminating dairy and wheat products, has also gained favor with some parents.
While many of these treatments have never been adequately studied, that doesn't mean they aren't promoted.
“One of the characteristics of fad treatments is that they are discussed in the media and on the internet, where many parents can be exposed to them,” said Anne Snow, an Ohio State psychology graduate student.
And while some fads are simply ineffective, others can even be dangerous, Mulick said. Chelation therapy, which involves taking medicines to remove the heavy metal mercury from the body, has reportedly led to the death of at least one autistic boy receiving that treatment. Chelation therapy was also touted years ago as a new treatment against some forms of cancer but was eventually shown to have no helpful effect.
Many parents try multiple approaches, hoping at least one will help. Kettering said one survey she found suggests that the average parent of a child with autism has tried seven different therapies.
“We're not saying that all of these treatments don't work or that they are all dangerous,” Kettering said. “But the research hasn't been done to suggest that most of them are effective or even safe.”
More Scientific Evidence Needed to Support Most Claims
Many of the treatments may have just enough basis in scientific fact to attract attention, even if the treatment itself is unproven.
For instance, most scientists believe that many cases of autism are caused by genetic mutations, and some mutations can be caused by various chemicals that we encounter in our everyday lives, Mulick said.
But still, there is no evidence that any particular chemical causes mutations that lead to autism, as some have claimed.
“There's a shred of truth in the rationale presented for some fad treatments, and that is enough for some people to go with,” he said.
Another reason that fad treatments persist has to do with the natural course of autism, Mulick said.
Autism, like many conditions, has cycles in which symptoms get worse and then get better. Parents tend to search for treatments when symptoms are getting worse, and when their children get better – as they do in the normal course of disease – parents credit the new therapy.
“It's natural to have this bias that the therapy you're trying has had some positive effect,” he said. “People want to believe.”
Early Intensive Behavioral Intervention Can Have Positive Effects
While other treatments are still being investigated, right now the only therapy that has been shown to have a long-term positive affect on autism is called Early Intensive Behavioral Intervention, Mulick said.
EIBI is a highly structured approach to learning, in which children with autism are taught first to imitate their teachers. But this treatment is very time-consuming and labor intensive. It involves one-on-one behavioral treatment with the child for up to 40 hours a week for several years.
“It's expensive and difficult for many parents to use,” Mulick said. “That's got to be one reason other treatments look attractive to them.”
Mulick said other treatments and therapies are being studied. However, it takes years to test treatments for autism because of the nature of the disease and problems with proving effectiveness.
“Autism studies are a long, time-consuming, and expensive process,” Mulick said. “And some of the fad treatments being used today would never be approved for testing – they are just too dangerous.”
In addition to Mulick, Kettering and Snow, other presenters at the symposium included Ohio State graduate students Cristan Farmer, Megan Norris, Andrea Witwer and Jill Hollway.
Copyright © 2007 Ohio State University
http://researchnews.osu.edu/archive/fadaut.htm
Ohio State University
August 20, 2007
Copyright © 2007 Ohio State University
This article is used with permission from:
The Ohio State University Research News
Ineffective or even dangerous fad treatments for autism, always a problem, seem to be growing more pervasive, according to researchers who studied the problem.
“Developmental disabilities like autism are a magnet for all kinds of unsupported or disproved therapies, and it has gotten worse as more children have been diagnosed with autism,” said James Mulick, professor of pediatrics and psychology at Ohio State University .”
“There's no cure for autism, and many parents are willing to believe anything if they come to think it could help their child.”
"Outrageous Developmental Disabilities Treatments"
Mulick chaired a symposium on “Outrageous Developmental Disabilities Treatments” Aug. 20 in San Francisco at the annual meeting of the American Psychological Association. The symposium included presentations by several of Mulick's students at Ohio State who participated in a graduate seminar on fad treatments in autism.
“We're not saying that all of these treatments don't work or that they are all dangerous,” Kettering said. “But the research hasn't been done to suggest that most of them are effective or even safe.” Many of the treatments may have just enough basis in scientific fact to attract attention, even if the treatment itself is unproven.
Tracy Kettering, a doctoral student in special education at Ohio State , said a Google search for the phrase “autism treatment” yields more than 2.2 million matches.
“You get hundreds of different types of therapies that come up, and many have quotes from parents that claim a particular therapy ‘cured' their child,” Kettering said.
“It's no wonder that parents want to believe. But very few of these treatments have any evidence to support them.”
The number and range of fad treatments has seemed to grow in recent years as more children have been diagnosed with autism, said Mulick, who is also editor of a book on fad treatments called Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice.
Mulick said when he began treating autism in the 1970s about 3 children in 10,000 were said to have autism. Now, reports are 1 in 166 children have the condition. The number of cases has mushroomed because of better diagnoses, and a changing definition of autism that includes a broader range of disorders.
Some of the newer, more popular fad treatments for autism involve special diets or nutritional supplements. Megadoses of Vitamins C and B6 are popular, as well as supplements with fatty acids like omega-3s.
A casein and/or gluten-free diet, which involves eliminating dairy and wheat products, has also gained favor with some parents.
While many of these treatments have never been adequately studied, that doesn't mean they aren't promoted.
“One of the characteristics of fad treatments is that they are discussed in the media and on the internet, where many parents can be exposed to them,” said Anne Snow, an Ohio State psychology graduate student.
And while some fads are simply ineffective, others can even be dangerous, Mulick said. Chelation therapy, which involves taking medicines to remove the heavy metal mercury from the body, has reportedly led to the death of at least one autistic boy receiving that treatment. Chelation therapy was also touted years ago as a new treatment against some forms of cancer but was eventually shown to have no helpful effect.
Many parents try multiple approaches, hoping at least one will help. Kettering said one survey she found suggests that the average parent of a child with autism has tried seven different therapies.
“We're not saying that all of these treatments don't work or that they are all dangerous,” Kettering said. “But the research hasn't been done to suggest that most of them are effective or even safe.”
More Scientific Evidence Needed to Support Most Claims
Many of the treatments may have just enough basis in scientific fact to attract attention, even if the treatment itself is unproven.
For instance, most scientists believe that many cases of autism are caused by genetic mutations, and some mutations can be caused by various chemicals that we encounter in our everyday lives, Mulick said.
But still, there is no evidence that any particular chemical causes mutations that lead to autism, as some have claimed.
“There's a shred of truth in the rationale presented for some fad treatments, and that is enough for some people to go with,” he said.
Another reason that fad treatments persist has to do with the natural course of autism, Mulick said.
Autism, like many conditions, has cycles in which symptoms get worse and then get better. Parents tend to search for treatments when symptoms are getting worse, and when their children get better – as they do in the normal course of disease – parents credit the new therapy.
“It's natural to have this bias that the therapy you're trying has had some positive effect,” he said. “People want to believe.”
Early Intensive Behavioral Intervention Can Have Positive Effects
While other treatments are still being investigated, right now the only therapy that has been shown to have a long-term positive affect on autism is called Early Intensive Behavioral Intervention, Mulick said.
EIBI is a highly structured approach to learning, in which children with autism are taught first to imitate their teachers. But this treatment is very time-consuming and labor intensive. It involves one-on-one behavioral treatment with the child for up to 40 hours a week for several years.
“It's expensive and difficult for many parents to use,” Mulick said. “That's got to be one reason other treatments look attractive to them.”
Mulick said other treatments and therapies are being studied. However, it takes years to test treatments for autism because of the nature of the disease and problems with proving effectiveness.
“Autism studies are a long, time-consuming, and expensive process,” Mulick said. “And some of the fad treatments being used today would never be approved for testing – they are just too dangerous.”
In addition to Mulick, Kettering and Snow, other presenters at the symposium included Ohio State graduate students Cristan Farmer, Megan Norris, Andrea Witwer and Jill Hollway.
Copyright © 2007 Ohio State University
http://researchnews.osu.edu/archive/fadaut.htm
Wednesday, May 14, 2008
For The Disabled, Age 18 Brings Difficult Choice
For the Disabled, Age 18 Brings Difficult Choices
By MARC SANTORA
Published: May 14, 2008
Outside Sam Stabiner’s room pumps the steady drone of ventilators, giving life to his neighbors breath by breath. Most are in their 80s and 90s, in the twilight of their years.
The Stabiners’ predicament, however, is far from unique. As medical advances have allowed patients who might have died as children to survive into adulthood, the patients are falling into a void in a health care system that has yet to develop institutions for the young and “medically fragile.”
Each year 500,000 youths in the United States with special health care needs resulting from ailments like congenital heart disease, cystic fibrosis, diabetes, renal disease and sickle cell turn 18, according to a survey conducted by the United States Department of Health and Human Services.
Many of these young people will transition to adulthood smoothly, but for the most seriously disabled, the options for care often prove limited. As a result, about 8,000 people under age 30 are among roughly 1.4 million nursing home residents, according to the Centers for Medicare and Medicaid Services.
“This is a problem that has gone largely unrecognized and is only going to grow,” said Dr. Edwin F. Simpser, the chief medical officer at St. Mary’s Healthcare System for Children, the largest provider of intensive rehabilitation and specialized care for severely ill and disabled children in New York.
At St. Mary’s alone there are some 200 children aging out of its program in the next few years. “We could be talking about 70 percent of those kids ending up in a nursing home if we don’t find an alternative,” he said.
While the situation is not confined to New York, it varies state by state. “The people we are talking about did not exist 50 years ago,” said Dr. Miriam Kaufman, founder of the Good 2 Go Transition Program at the Hospital for Sick Children in Toronto. “We simply don’t have a model for these children.”
As the children grow older, so do the parents, making intensive home care more difficult, if it was even possible to begin with.
At 15, Sam Stabiner was a picture of health, with a perfect attendance record at his school and a normal life.
Then the headaches started, growing mysteriously more severe until he had to be hospitalized, fell into a coma and barely survived what doctors now believe was a rare form of meningitis.
For the next five years, he received intensive care at St. Mary’s, which provides care for some 4,000 children through inpatient, home-care, and community-based programs. The demand on the institution is so great, it is planning a major expansion of its Queens center in coming months.
Mr. Stabiner made slow progress, using a wheelchair and with only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy and able to slap high five. Beyond the care at St. Mary’s, he attended classes at Public School 79 in Manhattan, which is for children with special needs. He will age out of that program next year, his parents said.
His care is complicated because he had a tracheotomy and needs assistance eating, via a feeding tube. While he has regained some motor skills, the continuing medical care required by the tracheotomy led to his being categorized as medically fragile.
Still, when he turned 18, his parents were shocked to learn how that categorization significantly limited the options for their son’s care.
Erroll Stabiner, 67, said he contacted 87 institutions across the city, the vast majority traditional nursing homes, and found only three that had clusters of young adults. All of those were far from his home and none were particularly appealing, leaving him to try to place his son at the Isabella campus at Audubon Avenue and 190th Street, which had no history of working with young adults.
The administration at Isabella’s was initially reluctant, but after executives at St. Mary’s pressed the case, officials at Isabella’s relented.
The setting that the young Mr. Stabiner left could hardly be more different from the one he entered.
At St. Mary’s, which was the first inpatient palliative care center for children in the country, there is one health worker for every four patients. The rooms are brightly painted, with separate areas for school, recreation and physical rehabilitation. There is an attempt to allow even the most severely disabled patients to develop a routine and build relationships.
Mr. Stabiner’s old room is right off one of the main playrooms, filled with games and toys.
Michael, 17, whose family did not want to give a last name, is now residing on the hall after a nearly fatal car crash left him with a severe head injury. While he has no feeding tube, Michael will also be aging out of St. Mary’s soon and his family could face a similar quandary.
The doctors and psychologists at St. Mary’s believe the group setting and the encouragement of other children with similar ailments help speed rehabilitation, or at least provide comfort, because they are reminders that the children are not alone.
At Isabella’s, Mr. Stabiner is often without any diversions. His parents, who visit six days a week, fear that he will feel isolated and have asked the nurses to put him out by their station so he can get more daily stimulation. To help make him feel young, the Stabiners bought him an array of T-shirts with smart-alecky sayings that make their son laugh.
Despite the doting of the nurses, there is no question that the parents feel something has been lost.
“When we found out Sam was aging out, we were devastated,” said his mother, Leslie Stabiner, 66. “It was very depressing to realize that in a city like New York there are just no facilities.”
And it was not just her son who missed the company. Mrs. Stabiner said she and her husband had developed friendships with other parents at St. Mary’s, some of whom are now facing a similar problem.
For instance, one of the children from their son’s floor at St. Mary’s, Justin, just moved into Isabella’s on the floor above his after the Stabiners told them about their experience.
Mark J. Kator, the chief executive officer of Isabella’s, said that having only one or two people as young as Mr. Stabiner in the 700-bed institution created obvious difficulties.
“It presents challenges in that we are responsible for creating an environment that is good for the patient,” he said. But despite their best efforts, he said, “we are not going to create a milieu that is best for them.”
The situation has propelled the administration at St. Mary’s to begin an aggressive effort to establish a clinical model for new institutions equipped to handle medically fragile children as they age out of existing programs.
“It’s something totally new, so part of it is just educating people about the situation,” Dr. Simpser said. “We may also need to push for specific legislation.”
He said that St. Mary’s officials were exploring the idea of establishing small institutions in homelike settings — with perhaps as few as six young adults — where there would be one or two health professionals on duty at all times.
But Dr. Simpser said that if his institution did not push patients out after they turned 18, it could no longer accept new patients.
“It is a terrible dilemma,” he said.
By MARC SANTORA
Published: May 14, 2008
Outside Sam Stabiner’s room pumps the steady drone of ventilators, giving life to his neighbors breath by breath. Most are in their 80s and 90s, in the twilight of their years.
The Stabiners’ predicament, however, is far from unique. As medical advances have allowed patients who might have died as children to survive into adulthood, the patients are falling into a void in a health care system that has yet to develop institutions for the young and “medically fragile.”
Each year 500,000 youths in the United States with special health care needs resulting from ailments like congenital heart disease, cystic fibrosis, diabetes, renal disease and sickle cell turn 18, according to a survey conducted by the United States Department of Health and Human Services.
Many of these young people will transition to adulthood smoothly, but for the most seriously disabled, the options for care often prove limited. As a result, about 8,000 people under age 30 are among roughly 1.4 million nursing home residents, according to the Centers for Medicare and Medicaid Services.
“This is a problem that has gone largely unrecognized and is only going to grow,” said Dr. Edwin F. Simpser, the chief medical officer at St. Mary’s Healthcare System for Children, the largest provider of intensive rehabilitation and specialized care for severely ill and disabled children in New York.
At St. Mary’s alone there are some 200 children aging out of its program in the next few years. “We could be talking about 70 percent of those kids ending up in a nursing home if we don’t find an alternative,” he said.
While the situation is not confined to New York, it varies state by state. “The people we are talking about did not exist 50 years ago,” said Dr. Miriam Kaufman, founder of the Good 2 Go Transition Program at the Hospital for Sick Children in Toronto. “We simply don’t have a model for these children.”
As the children grow older, so do the parents, making intensive home care more difficult, if it was even possible to begin with.
At 15, Sam Stabiner was a picture of health, with a perfect attendance record at his school and a normal life.
Then the headaches started, growing mysteriously more severe until he had to be hospitalized, fell into a coma and barely survived what doctors now believe was a rare form of meningitis.
For the next five years, he received intensive care at St. Mary’s, which provides care for some 4,000 children through inpatient, home-care, and community-based programs. The demand on the institution is so great, it is planning a major expansion of its Queens center in coming months.
Mr. Stabiner made slow progress, using a wheelchair and with only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy and able to slap high five. Beyond the care at St. Mary’s, he attended classes at Public School 79 in Manhattan, which is for children with special needs. He will age out of that program next year, his parents said.
His care is complicated because he had a tracheotomy and needs assistance eating, via a feeding tube. While he has regained some motor skills, the continuing medical care required by the tracheotomy led to his being categorized as medically fragile.
Still, when he turned 18, his parents were shocked to learn how that categorization significantly limited the options for their son’s care.
Erroll Stabiner, 67, said he contacted 87 institutions across the city, the vast majority traditional nursing homes, and found only three that had clusters of young adults. All of those were far from his home and none were particularly appealing, leaving him to try to place his son at the Isabella campus at Audubon Avenue and 190th Street, which had no history of working with young adults.
The administration at Isabella’s was initially reluctant, but after executives at St. Mary’s pressed the case, officials at Isabella’s relented.
The setting that the young Mr. Stabiner left could hardly be more different from the one he entered.
At St. Mary’s, which was the first inpatient palliative care center for children in the country, there is one health worker for every four patients. The rooms are brightly painted, with separate areas for school, recreation and physical rehabilitation. There is an attempt to allow even the most severely disabled patients to develop a routine and build relationships.
Mr. Stabiner’s old room is right off one of the main playrooms, filled with games and toys.
Michael, 17, whose family did not want to give a last name, is now residing on the hall after a nearly fatal car crash left him with a severe head injury. While he has no feeding tube, Michael will also be aging out of St. Mary’s soon and his family could face a similar quandary.
The doctors and psychologists at St. Mary’s believe the group setting and the encouragement of other children with similar ailments help speed rehabilitation, or at least provide comfort, because they are reminders that the children are not alone.
At Isabella’s, Mr. Stabiner is often without any diversions. His parents, who visit six days a week, fear that he will feel isolated and have asked the nurses to put him out by their station so he can get more daily stimulation. To help make him feel young, the Stabiners bought him an array of T-shirts with smart-alecky sayings that make their son laugh.
Despite the doting of the nurses, there is no question that the parents feel something has been lost.
“When we found out Sam was aging out, we were devastated,” said his mother, Leslie Stabiner, 66. “It was very depressing to realize that in a city like New York there are just no facilities.”
And it was not just her son who missed the company. Mrs. Stabiner said she and her husband had developed friendships with other parents at St. Mary’s, some of whom are now facing a similar problem.
For instance, one of the children from their son’s floor at St. Mary’s, Justin, just moved into Isabella’s on the floor above his after the Stabiners told them about their experience.
Mark J. Kator, the chief executive officer of Isabella’s, said that having only one or two people as young as Mr. Stabiner in the 700-bed institution created obvious difficulties.
“It presents challenges in that we are responsible for creating an environment that is good for the patient,” he said. But despite their best efforts, he said, “we are not going to create a milieu that is best for them.”
The situation has propelled the administration at St. Mary’s to begin an aggressive effort to establish a clinical model for new institutions equipped to handle medically fragile children as they age out of existing programs.
“It’s something totally new, so part of it is just educating people about the situation,” Dr. Simpser said. “We may also need to push for specific legislation.”
He said that St. Mary’s officials were exploring the idea of establishing small institutions in homelike settings — with perhaps as few as six young adults — where there would be one or two health professionals on duty at all times.
But Dr. Simpser said that if his institution did not push patients out after they turned 18, it could no longer accept new patients.
“It is a terrible dilemma,” he said.
Saturday, May 10, 2008
Friday, May 2, 2008
AICARDI SYNDROME
Here's are two linka for information & research for Aicardi Syndrome site:
http://www.ninds.nih.gov/disorders/aicardi/aicardi.htm
http://www.aicardisyndrome.org/index.php?pname=whatis
http://www.ninds.nih.gov/disorders/aicardi/aicardi.htm
http://www.aicardisyndrome.org/index.php?pname=whatis
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