Most of the time, I admit, I operate on an emotional level when I should be using logic. Through clear deductive reasoning, for example, I should have figured out those sudden outbursts made by Elisabeth were years of frustration building up maybe from not using the potty for the first 13 years of her life.
Yes, I am exaggerating a bit about the potty training because we did try in earnest every year unsuccessfully. The point is that it's never easy figuring out their pace of personal development when all we have to work with is what other children are expected to do. For some it may take an entire lifetime to reach a milestone and for others it takes only a year.
For example, when most children are completely potty trained by 4 or 5 years old, Elisabeth was at a different level of development. According to the pediatricians and specialists, Elisabeth continued to function as a 5 or 6 month old infant in all areas of communication, fine motor, gross motor, and neurological development. So naturally as parents, we responded emotionally to her needs the way most parents would respond to a 5 or 6 month old infant.
Like most parents, we used this emotional connection to form the basis for her own personal development. It made everyone around her feel good meeting her needs because it resulted in favorable responses. We saw a personality emerge. We saw progress in other areas of development. Small and incremental at times. But we found a pathway to connect to her. We found her "happy" state." When she fluctuated between responsive and unresponsive, we were relieved to discover the things that made her really happy.
The flip side is that keeping her in that perpetual "happy state" does not prepare her for the world outside of our home because the world simply does not function at this ongoing "happy state" level. An architect or engineer, for example, is not functioning at our "happy state" level while designing spaces and access exceeding ADA expectations. Politicians are not functioning in Elisabeth's "happy state" while debating, defining, and funding her quality of life and quality of care.
Are you following me here?
The point I'm trying to make is that all children are unique in their emerging abilities and different areas of development. And for most parents, it's a game of trial and error. We're all searching for that X factor. You know, that X factor. The factor that reveals itself after following the prescribed pathways created by what we see other children doing with similar abilities.
For parents and caregivers with children who are born with disability labels or who develop a label after birth finding that particular child matching up to their own child in ability and development is impossible. The milestones, the charts, and the sequence in development is not there for our children. All we really have have to go on is our own X factor. The factor we discovered in hindsight creating that emotional bond defining for us a fleeting but tangible smile to mean a "yes" or a flinch in eyebrows to mean a "no."
Thursday, November 23, 2006
Wednesday, November 15, 2006
"We can't go out tonight there because..."
"We can't vacation there because ..."
"We can't ... because..."
I promised my daughter I would never use her global delays as a label or a reason not to do something. She was my daughter first. It never dawned on me that I would have to use her label of "disability" for getting something done. When her rights to an individualized education were being manipulated by a whole host of people who didn't know her or fully understand her needs or the needs of others, I was forced to point out the things that made her different from other children. I had to parade her disabilities to get people to understand why we needed to keep her county operated therapy school open.
Today, I can say that at least one of the local politicians responsible for closing the school by interfering and manipulating her rights to a free public education was brought to justice somewhat. This man through his cronies who undermined the media and a tax levy review committee was not re-elected.
He was voted out because he never responded to calls and e-mails about the bogus Maximus statistics or infringement of civil rights. He never addressed the concerns about his connections to the other groups who were also in on the closings. He ignored us and miscalculated the number of people whose live will be permanently altered because of his apathy, greed, and vanity. People that were affected by the outcome of other "rigged" tax levies. He was voted out because he made parents like me beg for something to which she was entitled and parade our child's disability like it was something bad while he laughed behind my back and the backs of other people "like her."
It is because of her disability "label" he will no longer have a job come next year. This was not fair to have this weight on her shoulders. She is only 12 years old. When we allow politicians to cross over into our personal life or the lives of others, how can we think there won't be long term consequences for everyone
"We can't vacation there because ..."
"We can't ... because..."
I promised my daughter I would never use her global delays as a label or a reason not to do something. She was my daughter first. It never dawned on me that I would have to use her label of "disability" for getting something done. When her rights to an individualized education were being manipulated by a whole host of people who didn't know her or fully understand her needs or the needs of others, I was forced to point out the things that made her different from other children. I had to parade her disabilities to get people to understand why we needed to keep her county operated therapy school open.
Today, I can say that at least one of the local politicians responsible for closing the school by interfering and manipulating her rights to a free public education was brought to justice somewhat. This man through his cronies who undermined the media and a tax levy review committee was not re-elected.
He was voted out because he never responded to calls and e-mails about the bogus Maximus statistics or infringement of civil rights. He never addressed the concerns about his connections to the other groups who were also in on the closings. He ignored us and miscalculated the number of people whose live will be permanently altered because of his apathy, greed, and vanity. People that were affected by the outcome of other "rigged" tax levies. He was voted out because he made parents like me beg for something to which she was entitled and parade our child's disability like it was something bad while he laughed behind my back and the backs of other people "like her."
It is because of her disability "label" he will no longer have a job come next year. This was not fair to have this weight on her shoulders. She is only 12 years old. When we allow politicians to cross over into our personal life or the lives of others, how can we think there won't be long term consequences for everyone
Sunday, October 15, 2006
The Cookie Monster ...
I lifted this note from "advocate" on Cincinnati Beacon's blog where I on occasion make guest appearances as the wordwis guys and host of other psuedonyms ...
submitted by advocate:you are right about the mr/dd - maximus was fired by the county while operating the out of state child support cases because they did such a lousy job. what’s the old saying, those who can do, those who can’t teach? ( not meant against teachers just overseers) maximus couldn’t make any of their own practices work within the financial constraints so they switched their foucs to telling everyone else how to do it. and they are failures at both—there must be some big campaign cotributions going onthere. heimlich ( yes heimlich - not maximus) heilich and finney the fink told the mr/dd to go after elderly parents of clients receiving services and collect child support fromthem (under a ubscure law, parents of disabled children are required to support them until their death) heimlich not only dumped the services back onto the over burdened schools - but on the backs of parents of disabled clients who, themselves, are o fixed icomes.this isn’t portune’s baby in ay way shape or form—this was heimlich and finey and dewine doing.just so you know—under the drake deal—the alliance ( defunk) can take allthe levy money we voted for and use that same money to “buy” drake fromthe public control ending the services for those experiencing catastrophic health care incidents.how does finey the fink refer to these groups? social service cabals??? that’s a pretty clear indication that finey the fink andheimlich are only for survival of the richest and bear no mroal responsiblity for their fellow man. hell - they won’t even let the public decide for themselves if they wantto help these families.
submitted by advocate:you are right about the mr/dd - maximus was fired by the county while operating the out of state child support cases because they did such a lousy job. what’s the old saying, those who can do, those who can’t teach? ( not meant against teachers just overseers) maximus couldn’t make any of their own practices work within the financial constraints so they switched their foucs to telling everyone else how to do it. and they are failures at both—there must be some big campaign cotributions going onthere. heimlich ( yes heimlich - not maximus) heilich and finney the fink told the mr/dd to go after elderly parents of clients receiving services and collect child support fromthem (under a ubscure law, parents of disabled children are required to support them until their death) heimlich not only dumped the services back onto the over burdened schools - but on the backs of parents of disabled clients who, themselves, are o fixed icomes.this isn’t portune’s baby in ay way shape or form—this was heimlich and finey and dewine doing.just so you know—under the drake deal—the alliance ( defunk) can take allthe levy money we voted for and use that same money to “buy” drake fromthe public control ending the services for those experiencing catastrophic health care incidents.how does finey the fink refer to these groups? social service cabals??? that’s a pretty clear indication that finey the fink andheimlich are only for survival of the richest and bear no mroal responsiblity for their fellow man. hell - they won’t even let the public decide for themselves if they wantto help these families.
Friday, September 15, 2006
Learning Disabled and Learning Disorders, Learning Diseases
I found three interesting research pieces online about "labeling children." Keep in mind that the articles are specifical to "learning disorder" labels and issues of the learning environment impeding progress.
http://www.naturalchild.com/jan_hunt/learning.html
http://www.ldonline.org/mminds/levine_paper.html
http://www.pbs.org/wgbh/misunderstoodminds/intro.html
http://www.naturalchild.com/jan_hunt/learning.html
http://www.ldonline.org/mminds/levine_paper.html
http://www.pbs.org/wgbh/misunderstoodminds/intro.html
Monday, September 11, 2006
More on Dr. Elliott Sherr and his collaborators at UCSF...
More on Elliot Sherr, leading the research on ACC at UCSF:
"Dr. Elliott Sherr and his collaborators at UCSF are studying the genetic causes of disorders of cognition and epilepsy, as well as the brain malformations associated with these disorders. Our focus is on polymicrogyria (PMG), Dandy-Walker malformation (DWM), and disorders of brain development that affect the corpus callosum (ACC/DCC). We are studying the clinical features of these disorders to better understand the problems faced by individuals with these disorders. The goal of our research is to use a better understanding of the underlying genetic causes as a foundation to develop better treatments for these groups of patients."
"Dr. Elliott Sherr and his collaborators at UCSF are studying the genetic causes of disorders of cognition and epilepsy, as well as the brain malformations associated with these disorders. Our focus is on polymicrogyria (PMG), Dandy-Walker malformation (DWM), and disorders of brain development that affect the corpus callosum (ACC/DCC). We are studying the clinical features of these disorders to better understand the problems faced by individuals with these disorders. The goal of our research is to use a better understanding of the underlying genetic causes as a foundation to develop better treatments for these groups of patients."
Monday, September 4, 2006
When LRE isn't clear ...
TO HELP YOU DEFINE WHAT IS BEST FOR YOUR CHILD IF THEY HAVE SERIOUS MEDICAL PROBLEMS, SERIOUS DELAYED DEVELOPMENTAL ISSUES, AND CANNOT BE MAINSTREAMED INTO YOUR DISTRICT SCHOOL.
READ ON:http://www.kidstogether.org/right-ed.htm
READ ON:http://www.kidstogether.org/right-ed.htm
Wednesday, August 30, 2006
Schools with Good Report Cards ...
Forest Hills - autism program through 4th grade - bad transisition into upper levels - retrograde reaction, St. James (White Oak) St. Williams (autism), Wyoming (multiple disabilities, cp), Conductive Learning Center (this would be great for all our kids who have severe global delays), MR/dd schools Margaret Rost (west side) and Bobby Fairfax (east side). I am hearing good reports about Kings Mills school district who have children with mobility and medical challenges.
Thursday, August 24, 2006
When Lifetimes Pass Before Our Eyes ...
Dedicated to Teddy and Joel ..
I received a call from a mom who was worried sick upon hearing her child's bus ride will be one hour and a half to school. I try consoling her by saying Elisabeth's ride had been this way for six years and she appears to be adjusting to it. Although I have no way to detect her feeling about it or what actually goes on while in the bus drivers care one way or the other, I can tell she is in good hands by the smile and giggle she gives to him in the morning sharing a "high five " moment.
I explain to Worried Mom, I get the full report if she was happy, sad, sleepy, unusually quiet, or pale. When she gets off the bus into our home, I do the usual inspection of her arms, legs, and body in general while changing her diaper just to be safe. The only thing I notice is her fingers are shrivelled from her stroking her tongue and sucking on her tongue. She does this when she is left alone for long periods of time out of boredom but also out of pleasure after eating or before she goes to sleep. For this fixation I am selfishly grateful she cannot explore other parts of her body for now.
From my experience, these people, the bus people, are compassionate, engaging, and respectful to her needs. They are the first ones to recognize when our children are sick or in trouble. They were the first people who informed me that my daughter's other school was scheduled to close followed by a "I'm really sorry this is happening." The mother paused. There was silence. She begins iin one breath:
"No, you don't understand, he is too figidy after a few minutes and sometimes he can be perceived as having a tantrum and out of control. And to be left on the bus for this long? He does strange things that might not be understood by someone who is not trained to work with kids like him. He might take his clothes off or become fixated by his seatbelt and remove if he is unsupervised. He's fast. She continues with the question we all ask from time to time about services in general, is this humane knowing how tantrums and freakouts are initiated and then putting kids in an environment that causes it? How safe is it for the bus if the bus driver who has to stop the bus to investigate a situation he or she is not fully trained to understand or respond?"
I was silent. Very silent. I suggested asking the bus company to have somebody sit with him. "Can you call your pediatrician to write a note with an explanation?" This is practical and having a doctor's note will provide justification and she will pay extra for someone to sit next to her son. Her little boy, she explains presents as "autistic" but still has no prognosis or diagnosis to explain his neurological impairment. She jokes "I'll call the bus company, I'm sure they have a neurologist or expert on hand that can advise me."
Many of our children are helpless in this situation. Their typical developing peers can communicate if something is wrong. Our's cannot. It takes a long time to get used to being on bus for an hour and half. Shoes, baseball caps and clothes that get tossed out are just the "tip of the iceberg." Sometime, they become aggressive biting themselves or others. Maybe even putting the other kids at risk everytime the bus driver has to stop. The bus driver and monitor called me one time about one of the kids swinging at Elisabeth who showed no signs of distress.
We are frozen in a time zone trying to figure how we can provide and protect our children who have developmental patterns frozen in a different time zone of infancy. Their cognition impairment and neurological disorders cause their behavior to change as quickly as a second hand on the clock prompted by who knows what. When we are not there, it is natural for us to we worry. We feel guilty because we know things can happen but we don't know what or when or where or why or how. There are certain triggers we as parents, therapists, and special education teachers can recognize and respond. There are some we cannot and a lot can happen in an hour and half.
A whole lifetime can pass in one second.
I received a call from a mom who was worried sick upon hearing her child's bus ride will be one hour and a half to school. I try consoling her by saying Elisabeth's ride had been this way for six years and she appears to be adjusting to it. Although I have no way to detect her feeling about it or what actually goes on while in the bus drivers care one way or the other, I can tell she is in good hands by the smile and giggle she gives to him in the morning sharing a "high five " moment.
I explain to Worried Mom, I get the full report if she was happy, sad, sleepy, unusually quiet, or pale. When she gets off the bus into our home, I do the usual inspection of her arms, legs, and body in general while changing her diaper just to be safe. The only thing I notice is her fingers are shrivelled from her stroking her tongue and sucking on her tongue. She does this when she is left alone for long periods of time out of boredom but also out of pleasure after eating or before she goes to sleep. For this fixation I am selfishly grateful she cannot explore other parts of her body for now.
From my experience, these people, the bus people, are compassionate, engaging, and respectful to her needs. They are the first ones to recognize when our children are sick or in trouble. They were the first people who informed me that my daughter's other school was scheduled to close followed by a "I'm really sorry this is happening." The mother paused. There was silence. She begins iin one breath:
"No, you don't understand, he is too figidy after a few minutes and sometimes he can be perceived as having a tantrum and out of control. And to be left on the bus for this long? He does strange things that might not be understood by someone who is not trained to work with kids like him. He might take his clothes off or become fixated by his seatbelt and remove if he is unsupervised. He's fast. She continues with the question we all ask from time to time about services in general, is this humane knowing how tantrums and freakouts are initiated and then putting kids in an environment that causes it? How safe is it for the bus if the bus driver who has to stop the bus to investigate a situation he or she is not fully trained to understand or respond?"
I was silent. Very silent. I suggested asking the bus company to have somebody sit with him. "Can you call your pediatrician to write a note with an explanation?" This is practical and having a doctor's note will provide justification and she will pay extra for someone to sit next to her son. Her little boy, she explains presents as "autistic" but still has no prognosis or diagnosis to explain his neurological impairment. She jokes "I'll call the bus company, I'm sure they have a neurologist or expert on hand that can advise me."
Many of our children are helpless in this situation. Their typical developing peers can communicate if something is wrong. Our's cannot. It takes a long time to get used to being on bus for an hour and half. Shoes, baseball caps and clothes that get tossed out are just the "tip of the iceberg." Sometime, they become aggressive biting themselves or others. Maybe even putting the other kids at risk everytime the bus driver has to stop. The bus driver and monitor called me one time about one of the kids swinging at Elisabeth who showed no signs of distress.
We are frozen in a time zone trying to figure how we can provide and protect our children who have developmental patterns frozen in a different time zone of infancy. Their cognition impairment and neurological disorders cause their behavior to change as quickly as a second hand on the clock prompted by who knows what. When we are not there, it is natural for us to we worry. We feel guilty because we know things can happen but we don't know what or when or where or why or how. There are certain triggers we as parents, therapists, and special education teachers can recognize and respond. There are some we cannot and a lot can happen in an hour and half.
A whole lifetime can pass in one second.
Tuesday, August 15, 2006
FAPE PAGE
Here is a gold mine of information about FAPE
This is a resource that is so extensive, it should be handed out to every parent in America who has a child with special needs. Thank you, Sandy.http://fapepage.blogspot.com/
This is a resource that is so extensive, it should be handed out to every parent in America who has a child with special needs. Thank you, Sandy.http://fapepage.blogspot.com/
Saturday, August 12, 2006
NEW IDEA REGULATIONS AUGUST 2006
I just glanced through the new IDEA regulations reinterpreted and there are 330 pages to it. That's right, 330 pages. Basically, it will take you a few days to sort through it or you're going to have to hire a lawyer to interpret it or rely on what your school district says.
http://www.ed.gov/legislation/FedRegister/finrule/2006-3/081406a.pdf
Just remember, the law hasn't changed. Everyone is still entitled to IEP's and alternative placements. I would suggest that everyone with a child currently protected by this law to take to your next IEP meeting or assessment at least one catalog of adaptive equipment to identify any curricula tools or adaptive equipment that will help your child be included in the classroom and to fulfill their IEP. Also bring along at least one advocate for each of your child's impairment and make sure you have a specialist or physician's statement to help describe the areas of deficiency and strengths if your child is not ready for an inclusive environment or if you are not satisfied with your school's "least restrictive environment" or if there are other services offered in your community that best match your child's needs not currently offered by the school.
Happy reading:
http://www.ed.gov/legislation/FedRegister/finrule/2006-3/081406a.pdf
http://www.ed.gov/legislation/FedRegister/finrule/2006-3/081406a.pdf
Just remember, the law hasn't changed. Everyone is still entitled to IEP's and alternative placements. I would suggest that everyone with a child currently protected by this law to take to your next IEP meeting or assessment at least one catalog of adaptive equipment to identify any curricula tools or adaptive equipment that will help your child be included in the classroom and to fulfill their IEP. Also bring along at least one advocate for each of your child's impairment and make sure you have a specialist or physician's statement to help describe the areas of deficiency and strengths if your child is not ready for an inclusive environment or if you are not satisfied with your school's "least restrictive environment" or if there are other services offered in your community that best match your child's needs not currently offered by the school.
Happy reading:
http://www.ed.gov/legislation/FedRegister/finrule/2006-3/081406a.pdf
Thursday, August 3, 2006
Who Stole the Cookie for the Cookie Jar?
No Child Left Behind and Ohio Proficiency Test: Who Took the Cookie from the Cookie Jar?
A few days ago, I received in the mail Elisabeth's report card from the State of Ohio. Not only is she beyond proficient in math, science, reading, spelling, and social studies, she is perfect. She scored a "perfect" on the State of Ohio's Proficiency examination.
I've been thinking about contacting Governor Taft to congratulate him for his success in providing a testing mechanism that can accurately define and measure the proficiency level for all children with varying learning abilities, disorders, disabilities, and delays throughout the State of Ohio. I had no idea Elisabeth's strengths were cognition driven. In fact, when she was born I was informed by the head of neurology that this part of her brain was "disconnected."
I'm sure the research staff at the University of California in SF will also be amazed since it was only last week when they suggested we take a non declarative approach in addressing her needs. Do I dare suggest that maybe the research for Elisabeth's diagnosis is on the wrong track. too, and that they should consider hopping on the O.D.E.'s bandwagon?
I suppose President Bush is due for a big "thank you" as well since "NO CHILD LEFT BEHIND" legislation was the driving force for introducing proficiency testing in Ohio. This is how they both got their current jobs in government. Both of their big ideas would provide a cost savings to tax payers from shifting the financial burden of operating public schools onto local school districts leaving both the Federal and State with no other responsibility except for providing reading programs for two years, lunches for kids, and proficiency testing.
Are there Nobel Prizes for Cookie Jar Economics and Proficiency Tests? President Bush should be nominated for his "bait and switch" talent with Cookie Jars. Governor Taft, on the other hand, should be commended for investing the money he saved for tax payers by putting it into the antiquities market.
In the meantime, Elisabeth and I are going to have a heart to heart discussion tonight about why she's been holding out on me all these years. Had I known she was beyond proficient, I would have considered science or math camp this summer or I would have asked her to spell out for me why she hasn't talked to me for the past 12 years.
posted by Elisabeth's Mom @ 6:28 AM 1 comments
Wednesday, June 28, 2006
A few days ago, I received in the mail Elisabeth's report card from the State of Ohio. Not only is she beyond proficient in math, science, reading, spelling, and social studies, she is perfect. She scored a "perfect" on the State of Ohio's Proficiency examination.
I've been thinking about contacting Governor Taft to congratulate him for his success in providing a testing mechanism that can accurately define and measure the proficiency level for all children with varying learning abilities, disorders, disabilities, and delays throughout the State of Ohio. I had no idea Elisabeth's strengths were cognition driven. In fact, when she was born I was informed by the head of neurology that this part of her brain was "disconnected."
I'm sure the research staff at the University of California in SF will also be amazed since it was only last week when they suggested we take a non declarative approach in addressing her needs. Do I dare suggest that maybe the research for Elisabeth's diagnosis is on the wrong track. too, and that they should consider hopping on the O.D.E.'s bandwagon?
I suppose President Bush is due for a big "thank you" as well since "NO CHILD LEFT BEHIND" legislation was the driving force for introducing proficiency testing in Ohio. This is how they both got their current jobs in government. Both of their big ideas would provide a cost savings to tax payers from shifting the financial burden of operating public schools onto local school districts leaving both the Federal and State with no other responsibility except for providing reading programs for two years, lunches for kids, and proficiency testing.
Are there Nobel Prizes for Cookie Jar Economics and Proficiency Tests? President Bush should be nominated for his "bait and switch" talent with Cookie Jars. Governor Taft, on the other hand, should be commended for investing the money he saved for tax payers by putting it into the antiquities market.
In the meantime, Elisabeth and I are going to have a heart to heart discussion tonight about why she's been holding out on me all these years. Had I known she was beyond proficient, I would have considered science or math camp this summer or I would have asked her to spell out for me why she hasn't talked to me for the past 12 years.
posted by Elisabeth's Mom @ 6:28 AM 1 comments
Wednesday, June 28, 2006
Sunday, July 30, 2006
TEN PERCENT CLUB
A few weeks ago, a friend and I planned to pack a picnic and go on the bike trail at Miami Whitewater with our daughters in tow. Driving over to pick her family up, I didn't pay any attention to the rain clouds and pools of water accumulating on the streets. It wasn't even close to being a decent day for a bike trip but there was no question about proceeding because when I pulled in her driveway, her girls were waiting with helmets in hand. This was the sign I needed.
I don't remember how our conversation started but I remember the giggles from the girls in back, the heavy clouds hanging overhead, and the rain pounding on the roof of the car. At some point the conversation up front was going in the direction about why married couples with children who have special needs end in divorce and I think she threw out "90%." It sounded a little too high, but our friendship suddenly transformed into something more private and special after we started taling about the implications of any marriage falling apart for this reason. Our marriages are hardly perfect we agreed. We can count the many times we've considered ending it before saving it. We spent our whole lives preparing for our children without even knowing it. Every little encounter we had with these feelings drew us closer to our children.
It was raining very heavy and I thought I missed the exit so everyone became quiet in the car. It seemed like forever until finally we read the next sign "Miami White Water Park - this exit." I was happy that I didn't have to turn and travel back. The rain slowed down to a slight drizzle as we looked up at the sky to see where the storm was going. Before we got out of the car, we saw a clearing and signs of a Sun peeking through. We heard no thunder so we got ready for the bike trail adventure.While we were setting up the bikes and burleys, I saw a mother fighting an emotion and expression on her face when she realized one of her younger daughter was missing. We called out to the little one scattering behind the few parked cars until we found her peddling toward us calling out "are we ready yet?"
It was difficult to have any conversation throughout the ride beyond how we will manage the next few minutes. At about 3/4 of the way and two hours later, near the marsh, the girls were showing signs of mutiny. Since I could not offer an escape route, I used the park map on the shelter board up ahead to give the girls something more hopeful but tangible to relieve their exhaustion. For the little one, I demonstrated on her arm "the shoulder is where we started and the fingers are where we will end. We are right here" pointing to the wrist.Their discovery became our own victory.
Just as we road into the parking lot, it began to drizzle while more clouds and thunder moved in. We got everything packed up just in time before the downpour. As our daughters' excited conversations continued to fill the car, I kepted my eyes glued on the blurry road while my friend took a call from her husband. I sensed his appreciation for her patience when he heard about their success because the weather to him didn't appear to be cycling weather.
It was her patience, I discovered that day, that qualified her to be in the "ten percent" club. Her patience, which is different from mine, is what helped her decide when to go through the windows of opportunity in her life or through the windows of preparation for another life. I discovered, too, something about myself and why I made up ten percent of the parents with children with special needs.Neither she nor I, bothered to check the weather report that day and taking a rain check never entered our thoughts. The prize, I discovered, was having the ability to see that "90%" of the time, things are going to be okay.
I don't remember how our conversation started but I remember the giggles from the girls in back, the heavy clouds hanging overhead, and the rain pounding on the roof of the car. At some point the conversation up front was going in the direction about why married couples with children who have special needs end in divorce and I think she threw out "90%." It sounded a little too high, but our friendship suddenly transformed into something more private and special after we started taling about the implications of any marriage falling apart for this reason. Our marriages are hardly perfect we agreed. We can count the many times we've considered ending it before saving it. We spent our whole lives preparing for our children without even knowing it. Every little encounter we had with these feelings drew us closer to our children.
It was raining very heavy and I thought I missed the exit so everyone became quiet in the car. It seemed like forever until finally we read the next sign "Miami White Water Park - this exit." I was happy that I didn't have to turn and travel back. The rain slowed down to a slight drizzle as we looked up at the sky to see where the storm was going. Before we got out of the car, we saw a clearing and signs of a Sun peeking through. We heard no thunder so we got ready for the bike trail adventure.While we were setting up the bikes and burleys, I saw a mother fighting an emotion and expression on her face when she realized one of her younger daughter was missing. We called out to the little one scattering behind the few parked cars until we found her peddling toward us calling out "are we ready yet?"
It was difficult to have any conversation throughout the ride beyond how we will manage the next few minutes. At about 3/4 of the way and two hours later, near the marsh, the girls were showing signs of mutiny. Since I could not offer an escape route, I used the park map on the shelter board up ahead to give the girls something more hopeful but tangible to relieve their exhaustion. For the little one, I demonstrated on her arm "the shoulder is where we started and the fingers are where we will end. We are right here" pointing to the wrist.Their discovery became our own victory.
Just as we road into the parking lot, it began to drizzle while more clouds and thunder moved in. We got everything packed up just in time before the downpour. As our daughters' excited conversations continued to fill the car, I kepted my eyes glued on the blurry road while my friend took a call from her husband. I sensed his appreciation for her patience when he heard about their success because the weather to him didn't appear to be cycling weather.
It was her patience, I discovered that day, that qualified her to be in the "ten percent" club. Her patience, which is different from mine, is what helped her decide when to go through the windows of opportunity in her life or through the windows of preparation for another life. I discovered, too, something about myself and why I made up ten percent of the parents with children with special needs.Neither she nor I, bothered to check the weather report that day and taking a rain check never entered our thoughts. The prize, I discovered, was having the ability to see that "90%" of the time, things are going to be okay.
Sunday, July 2, 2006
Conductive Learning Information In Cincinnati
Conductive Education Article
I recommend every parent who has a child with motor delays to read this article. There is one one in Covington, KY.
http://www.iacea.org/CE.htmhttp://www.conductive-ed.org.uk/What.htm
http://www.autism-pdd.net/testdump/test397.htm
Article about the school http://wcpo.com/wcpo/localshows/9onyourkidsside/11762e8f.html and an article from CP http://www.cerebralpalsysource.com/News_and_Articles/conductive-learning/index.html
I recommend every parent who has a child with motor delays to read this article. There is one one in Covington, KY.
http://www.iacea.org/CE.htmhttp://www.conductive-ed.org.uk/What.htm
http://www.autism-pdd.net/testdump/test397.htm
Article about the school http://wcpo.com/wcpo/localshows/9onyourkidsside/11762e8f.html and an article from CP http://www.cerebralpalsysource.com/News_and_Articles/conductive-learning/index.html
Saturday, July 1, 2006
White Collar Crime in our Backyard?
A simple law that was created to protect the civil rights of children with severe disabilities by giving them the right to a free education base on their individual need due to their disability has been violated. The same law that allows a child with special needs to have a individualized education plan (IEP) designed by parents and school district based on the child's individual disability was also violated.
Also in violation of the law is the parents right to define and determine alternative services through their school district by "continuum of alternative services" and their right to be properly notified if any changes will be made in services.
The heavy regulated “No Child Left Behind” statute imposed many restrictions on our children's right to a free public education guaranteed by the Individuals with Disabilities Education Act or IDEA laws established in 1974 by enforcing curriculum guidelines into IEP (Individual Education Plan) making any IEP throughout the US void. The purpose of an IEP is to allow the school district and parent to design a proper special education plan that meets the individual needs of the child.
It is the school district and parent who can accessed alternative services through "continuum of services" which is part of their child's civil rights. It also guarentees that they cannot be removed without first notifying their parents.
However the children were removed without parental notification from a school at was closed by the MR/dd Superintendent and Board who re-defined "services" and transferred the childen without their parent's permissin to another location or to the district school without first notifying parents. "Services" that are to be determined by parent and district school according to federal law.
It is through the 1974 IDEA federal law that allows children the right to attend a special therapy center through "continuum of alternative services" and protects them from being removed without properly notifying the parents or guardian. How these services are defined and determined are through the parents and district schools. The facility providing services cannot remove or transfer a child into another location or service because they are only providing the services, not defining it for the parents and districts.
Here are some references to look at:
Question: Once a determination is made that a disabled student cannot be educated satisfactorily in the regular educational environment, even with the provision of supplementary aids and services, what considerations govern placement?
ANSWER: IDEA does not require that every student with a disability be placed in the regular classroom regardless of individual abilities and needs.This recognition that regular class placement may not be appropriate for every disabled student is reflected in the requirement that school districts make available a range of placement options, known as a continuum of alternative placements, to meet the unique educational needs of students with disabilities. This requirement for the continuum reinforces the importance of the individualized inquiry, not a "one size fits all" approach, in determining what placement is the LRE for each student with a disability. The options on this continuum must include "the alternative placements listed in the definition of special education under § 300.17 (instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions). " 34 CFR §300.551 (b) (1).These options must be available to the extent necessary to implement the IEP of each disabled student. The placement team must select the option on the continuum in which it determines that the student's IEP can be implemented. Any alternative placement selected for the student outside of the regular educational environment must maximize opportunities for the student to interact with nondisabled peers, to the extent appropriate to the needs of the student.It also should be noted that under IDEA, parents must be given written prior notice that meets the requirements of §300.505 a reasonable time before a public agency implements a proposal or refusal to initiate or change the identification, evaluation, or educational placement of the child, or the provision of FAPE to the child. Consistent with this notice requirement, parents of disabled students must be informed that the public agency is required to have a full continuum of placement options, as well as about the placement options that were actually considered and the reasons why those options were rejected. 34 CFR §§300.504-300.505; Notice of Policy Guidance on Deaf Students Education
Posted by Labeled Disable
Also in violation of the law is the parents right to define and determine alternative services through their school district by "continuum of alternative services" and their right to be properly notified if any changes will be made in services.
The heavy regulated “No Child Left Behind” statute imposed many restrictions on our children's right to a free public education guaranteed by the Individuals with Disabilities Education Act or IDEA laws established in 1974 by enforcing curriculum guidelines into IEP (Individual Education Plan) making any IEP throughout the US void. The purpose of an IEP is to allow the school district and parent to design a proper special education plan that meets the individual needs of the child.
It is the school district and parent who can accessed alternative services through "continuum of services" which is part of their child's civil rights. It also guarentees that they cannot be removed without first notifying their parents.
However the children were removed without parental notification from a school at was closed by the MR/dd Superintendent and Board who re-defined "services" and transferred the childen without their parent's permissin to another location or to the district school without first notifying parents. "Services" that are to be determined by parent and district school according to federal law.
It is through the 1974 IDEA federal law that allows children the right to attend a special therapy center through "continuum of alternative services" and protects them from being removed without properly notifying the parents or guardian. How these services are defined and determined are through the parents and district schools. The facility providing services cannot remove or transfer a child into another location or service because they are only providing the services, not defining it for the parents and districts.
Here are some references to look at:
Question: Once a determination is made that a disabled student cannot be educated satisfactorily in the regular educational environment, even with the provision of supplementary aids and services, what considerations govern placement?
ANSWER: IDEA does not require that every student with a disability be placed in the regular classroom regardless of individual abilities and needs.This recognition that regular class placement may not be appropriate for every disabled student is reflected in the requirement that school districts make available a range of placement options, known as a continuum of alternative placements, to meet the unique educational needs of students with disabilities. This requirement for the continuum reinforces the importance of the individualized inquiry, not a "one size fits all" approach, in determining what placement is the LRE for each student with a disability. The options on this continuum must include "the alternative placements listed in the definition of special education under § 300.17 (instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions). " 34 CFR §300.551 (b) (1).These options must be available to the extent necessary to implement the IEP of each disabled student. The placement team must select the option on the continuum in which it determines that the student's IEP can be implemented. Any alternative placement selected for the student outside of the regular educational environment must maximize opportunities for the student to interact with nondisabled peers, to the extent appropriate to the needs of the student.It also should be noted that under IDEA, parents must be given written prior notice that meets the requirements of §300.505 a reasonable time before a public agency implements a proposal or refusal to initiate or change the identification, evaluation, or educational placement of the child, or the provision of FAPE to the child. Consistent with this notice requirement, parents of disabled students must be informed that the public agency is required to have a full continuum of placement options, as well as about the placement options that were actually considered and the reasons why those options were rejected. 34 CFR §§300.504-300.505; Notice of Policy Guidance on Deaf Students Education
Posted by Labeled Disable
Tuesday, June 27, 2006
Good Services Forced Into Decline ...
MR/dd Tax Levy Review.pdg
Cutting the tree down ...
Here's an interesting report that shows a steady increase in number of children served from 1995 to 1999... and then it drops off. This is when they started closing the federal-state-county run preschools that were housed in MR/dd facilities...
Cutting the tree down ...
Here's an interesting report that shows a steady increase in number of children served from 1995 to 1999... and then it drops off. This is when they started closing the federal-state-county run preschools that were housed in MR/dd facilities...
Wednesday, June 7, 2006
MR/dd School Closing Residuals
The reality of MR/dd school closings around Ohio has sadly resulted in an over-population of kids with special needs who are being warehoused in their district school. Just heard from licensed board-certified special ed. teacher about the problems she is having in her classroom with the new ODE regulations. She says its a mess and the "warehouse" I've been writing about is reality she deals with every day.
Another therapist I met with over the weekend informs me that Cincinnati Public schools aren't even close to meeting the needs of the individual students and she urges every parent in Cincinnati with a child with special needs to rethink their child's IEP based on their child's ability and not what the school offers.
Remember, we still have two MR/dd therapy schools open and if you can't get in, you need to call the county commissioners because they are the ones who vote to put the levees on the ballot... they need to know you were shut out. They'll tell you this is not their job, but you need to remind about the tax levy ballot process and how you would like to be contacted the next time a levy goes on the ballot.
Another therapist I met with over the weekend informs me that Cincinnati Public schools aren't even close to meeting the needs of the individual students and she urges every parent in Cincinnati with a child with special needs to rethink their child's IEP based on their child's ability and not what the school offers.
Remember, we still have two MR/dd therapy schools open and if you can't get in, you need to call the county commissioners because they are the ones who vote to put the levees on the ballot... they need to know you were shut out. They'll tell you this is not their job, but you need to remind about the tax levy ballot process and how you would like to be contacted the next time a levy goes on the ballot.
Saturday, May 6, 2006
Residential Options, Cincinnati OH
Residential Options , Cincinnati, OH
For More Information Contact:
Patty McMahon1821 Summit Road, Suite 030
Cincinnati, Ohio 45237Phone (513) 821-2113 ext. 113Fax (513) 821-2141Patty@archamilton.orgResidential Options Conferenceand Provider Saturday, March 25th, 20069:00 a.m. – 3:00 p.m.
For More Information Contact:
Patty McMahon1821 Summit Road, Suite 030
Cincinnati, Ohio 45237Phone (513) 821-2113 ext. 113Fax (513) 821-2141Patty@archamilton.orgResidential Options Conferenceand Provider Saturday, March 25th, 20069:00 a.m. – 3:00 p.m.
Friday, March 3, 2006
A Day in the Life of Elisabeth ...
I wake up to the voice of Susan Stanberg and think about how the news today will have consequences for my children in the future. At least I'm given advance warning. Thank you, Susan, and sorry if I typed your last name wrong.
Mudslides covering two villages, investigations, and I begin sipping the coffee I am handed by my husband who's been up since 4:45 and had at least 45 minutes of healthy exercise. I get up to stretch catching the end of a story on the radio before I move to the kitchen table to glance at the headlines on the paper. A paper from another world. I look out the window. I stare for about 10 minutes at the darkness beyond my window waiting for the sun coming up over the horizon. I see smidges of silver and orange. I refill my coffee and move back to the table turning to Arts and Leisure and begin reading a very unfavorable review of "Barefoot in the Park."
Opinions are not tolerated much these days. I am against war. Right now in Cincinnati, its 6:20 a.m. at 28 degrees. Last night it was just 62 degrees in the middle of winter. This means Elisabeth has to dress warm for her one and half hour bus drive to school. She's still sleeping and I check to see if her Daddy packed her white grape juice for lunch. I wonder how different our world would be if Jimmy Carter got his second term. I think about Senator Glenn and Al Gore working two terms and Theresa Kerry as "First Lady."
I hear music in Elisabeth's room so she must have activated the communication button with her head as she turned. This means she is stirring. She looks so peaceful. Two cats and a dog are sleeping peacefully in her room. I quietly give her the first call to "wake up" and she doesn't budge. I look for the diaper, wipes, and wash cloth for dressing. I pick out a neat outfit with rhinestones glued on her jeans and top. There is no movement. Even from the dog. I begin searching for a pair of shoes to match her pants.
Daddy gives her the second call and kisses her. He slides the protective rail on the side of bed and talks to her. We comment about her "Mona Lisa" smile. Her eyes are still closed but she is smiling now. My conversation with her at this point is going over all the things we have to do this morning before her bus ride including saying good-bye to Daddy and big sister. Daddy gives her another kiss and says "good-bye." Her big sister comes in to say "good-bye," too. In unison, we call out to her "it's time to wake up, sweety." We love to watch her smile when she hears our voices.
The routine begins. She stretches first her arms then legs. She rolls over allowing me to change her diaper and give her quick wash. She is smiling at me. At 11 and half, she is about 43 pounds. It's a wrestling match putting her cloths on, rolling her this way and that. I look forward to putting on her pink "chucks" and tightening the shoestrings because the wrestling will be at end for awhile or until I have to put her in her chair at the table. I rub the heels of her feet and hope this is the day she will stand without assistance. The Great Leap Forward. There is a political movement to that name but at this point my mind is drawing blank.
The wrestling match continues while I walk her to the breakfast table. I'm thinking about "Kimmy" and "Patrick's" mom now because they have 16 and 18 year olds who weigh in about 50 or 60 -- maybe more. I would be exhausted by now. I can't imagine what Mildred is doing. Daytra and Perez weight at least over 90 pounds and cannot stand upright without flopping over. I can at least feel Elisabeth's muscles develop each day from the exercise she gets by doing "occupational" things.
Elisabeth eats her bowl of cereal, banana, and juice as I guide her arms and hands so she can feed herself. It gets a little messy with her hand tipping or tossing the spoon. Most times she misses the aim and the spoon and cup end up on the floor. I run to get a towel so her cloths stay clean. After 11 years, one would think that I'd have a supply of "bibbs." When I turn my back to get a clean towel for wiping, Elisabeth reachs for the bowl across the table and drops it on the ground. There is big laugh and an appreciative doggy laps up the milk and cereal. This is good thing that she is reaching across the table for something she wants. Or maybe she doesn't want it. I think she is playing "watch me, Mom." I love to hear her laughing. I am grateful she has a way of amusing herself.
I read her bits and pieces of articles while she looks on after I clean up the rest of the mess. Her hair is in need of brushing so I look for the brush. We have a million brushes here at home and at least three places that are labeled specifically for brushes but I can never find one. I look around. We finish up at the table and I walk over to get her lunch bag and put the remaining goodies in. I forget to brush her teeth. We "talk" about the lunch Daddy packed and get ready for the trek downstairs to her wheelchair. My neck is a little sore so I try to walk her through the room instead of carrying her. It takes about 20 minutes and we use the stairs. There are 18 steps with a landing in the middle. We bought this house thinking this would be good place to put an elevator lift for the future "just in case."
As each foot aims carefully for each step I wonder about Holly's Mom who must be very grateful her daughter at 15 who started walking recently. I remember how I cried when I heard this. I remind Elisabeth what she needs to do at school. "Try a little harder today to stand on your own." I can feel her arms and legs begging for independence. Her hands and fingers are tightly gripping my wrists for support. She is tipsy but she is also very determined. I love to feel her clasping my wrists.
I look for a clean coat and tie up the cuff of her sleeve inside out to protect her hands and fingers. Sometimes I put gloves on but the yarn is very abrasive on her mouth and she comes home with bad rashes from stroking her tongue which she does on her bus ride. I zip her up and put her safety belts on to prepare her for the bus ride. It's 7:30 and the bus will be here in any moment. I look for the brush again and find one in her back pack. I run back up stairs to get her lunch and call out to Elisabeth's little sister to wake up. At one time she was an early bird and watched for the bus. She is still sleeping soundly.
Elisabeth and I hear the diesel bus coming down the hill. It's time. It's Friday. I look up into our tree and notice the squirrel nuggery is safely attached to the branches up high. Only the night before we had 45 mile hour winds and was amazed that it was still intact. "How do they do that? How can they make a pile of leaves stay up so high without breaking apart?" I ask Elisabeth as I push her up the hill. The bus stops in front. Elisabeth lifts her arm up alittle and gives a big grin to the big yellow bus in view. She smiles for Mr. Simpston and Miss Angel. They're covered in down coats and fur trimmed hoods. I roll her on the wheelchair lift. She is not looking at me but turning to see if Miss Angel is behind her where she usually is. She is laughing and smiling. She is happy.
Mudslides covering two villages, investigations, and I begin sipping the coffee I am handed by my husband who's been up since 4:45 and had at least 45 minutes of healthy exercise. I get up to stretch catching the end of a story on the radio before I move to the kitchen table to glance at the headlines on the paper. A paper from another world. I look out the window. I stare for about 10 minutes at the darkness beyond my window waiting for the sun coming up over the horizon. I see smidges of silver and orange. I refill my coffee and move back to the table turning to Arts and Leisure and begin reading a very unfavorable review of "Barefoot in the Park."
Opinions are not tolerated much these days. I am against war. Right now in Cincinnati, its 6:20 a.m. at 28 degrees. Last night it was just 62 degrees in the middle of winter. This means Elisabeth has to dress warm for her one and half hour bus drive to school. She's still sleeping and I check to see if her Daddy packed her white grape juice for lunch. I wonder how different our world would be if Jimmy Carter got his second term. I think about Senator Glenn and Al Gore working two terms and Theresa Kerry as "First Lady."
I hear music in Elisabeth's room so she must have activated the communication button with her head as she turned. This means she is stirring. She looks so peaceful. Two cats and a dog are sleeping peacefully in her room. I quietly give her the first call to "wake up" and she doesn't budge. I look for the diaper, wipes, and wash cloth for dressing. I pick out a neat outfit with rhinestones glued on her jeans and top. There is no movement. Even from the dog. I begin searching for a pair of shoes to match her pants.
Daddy gives her the second call and kisses her. He slides the protective rail on the side of bed and talks to her. We comment about her "Mona Lisa" smile. Her eyes are still closed but she is smiling now. My conversation with her at this point is going over all the things we have to do this morning before her bus ride including saying good-bye to Daddy and big sister. Daddy gives her another kiss and says "good-bye." Her big sister comes in to say "good-bye," too. In unison, we call out to her "it's time to wake up, sweety." We love to watch her smile when she hears our voices.
The routine begins. She stretches first her arms then legs. She rolls over allowing me to change her diaper and give her quick wash. She is smiling at me. At 11 and half, she is about 43 pounds. It's a wrestling match putting her cloths on, rolling her this way and that. I look forward to putting on her pink "chucks" and tightening the shoestrings because the wrestling will be at end for awhile or until I have to put her in her chair at the table. I rub the heels of her feet and hope this is the day she will stand without assistance. The Great Leap Forward. There is a political movement to that name but at this point my mind is drawing blank.
The wrestling match continues while I walk her to the breakfast table. I'm thinking about "Kimmy" and "Patrick's" mom now because they have 16 and 18 year olds who weigh in about 50 or 60 -- maybe more. I would be exhausted by now. I can't imagine what Mildred is doing. Daytra and Perez weight at least over 90 pounds and cannot stand upright without flopping over. I can at least feel Elisabeth's muscles develop each day from the exercise she gets by doing "occupational" things.
Elisabeth eats her bowl of cereal, banana, and juice as I guide her arms and hands so she can feed herself. It gets a little messy with her hand tipping or tossing the spoon. Most times she misses the aim and the spoon and cup end up on the floor. I run to get a towel so her cloths stay clean. After 11 years, one would think that I'd have a supply of "bibbs." When I turn my back to get a clean towel for wiping, Elisabeth reachs for the bowl across the table and drops it on the ground. There is big laugh and an appreciative doggy laps up the milk and cereal. This is good thing that she is reaching across the table for something she wants. Or maybe she doesn't want it. I think she is playing "watch me, Mom." I love to hear her laughing. I am grateful she has a way of amusing herself.
I read her bits and pieces of articles while she looks on after I clean up the rest of the mess. Her hair is in need of brushing so I look for the brush. We have a million brushes here at home and at least three places that are labeled specifically for brushes but I can never find one. I look around. We finish up at the table and I walk over to get her lunch bag and put the remaining goodies in. I forget to brush her teeth. We "talk" about the lunch Daddy packed and get ready for the trek downstairs to her wheelchair. My neck is a little sore so I try to walk her through the room instead of carrying her. It takes about 20 minutes and we use the stairs. There are 18 steps with a landing in the middle. We bought this house thinking this would be good place to put an elevator lift for the future "just in case."
As each foot aims carefully for each step I wonder about Holly's Mom who must be very grateful her daughter at 15 who started walking recently. I remember how I cried when I heard this. I remind Elisabeth what she needs to do at school. "Try a little harder today to stand on your own." I can feel her arms and legs begging for independence. Her hands and fingers are tightly gripping my wrists for support. She is tipsy but she is also very determined. I love to feel her clasping my wrists.
I look for a clean coat and tie up the cuff of her sleeve inside out to protect her hands and fingers. Sometimes I put gloves on but the yarn is very abrasive on her mouth and she comes home with bad rashes from stroking her tongue which she does on her bus ride. I zip her up and put her safety belts on to prepare her for the bus ride. It's 7:30 and the bus will be here in any moment. I look for the brush again and find one in her back pack. I run back up stairs to get her lunch and call out to Elisabeth's little sister to wake up. At one time she was an early bird and watched for the bus. She is still sleeping soundly.
Elisabeth and I hear the diesel bus coming down the hill. It's time. It's Friday. I look up into our tree and notice the squirrel nuggery is safely attached to the branches up high. Only the night before we had 45 mile hour winds and was amazed that it was still intact. "How do they do that? How can they make a pile of leaves stay up so high without breaking apart?" I ask Elisabeth as I push her up the hill. The bus stops in front. Elisabeth lifts her arm up alittle and gives a big grin to the big yellow bus in view. She smiles for Mr. Simpston and Miss Angel. They're covered in down coats and fur trimmed hoods. I roll her on the wheelchair lift. She is not looking at me but turning to see if Miss Angel is behind her where she usually is. She is laughing and smiling. She is happy.
Definition of Disability According to IDEA LAW
How Does IDEA Define the 13 Disability Categories?
The IDEA provides definitions of the 13 disability categories listed above. These federal definitions guide how states define who is eligible for a free appropriate public education under IDEA. The definitions of disability terms are as follows:
1. Autism...
...means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects educational performance. Characteristics often associated with autism are engaging in repetitive activities and stereotyped movements, resistance to changes in daily routines or the environment, and unusual responses to sensory experiences. The term autism does not apply if the child's educational performance is adversely affected primarily because the child has emotional disturbance, as defined in #5 below.
A child who shows the characteristics of autism after age 3 could be diagnosed as having autism if the criteria above are satisfied.
2. Deaf-Blindness...
...means concomitant [simultaneous] hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.
3. Deafness...
...means a hearing impairment so severe that a child is impaired in processing linguistic information through hearing, with or without amplification, that adversely affects a child's educational performance.
4. Emotional Disturbance...
...means a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child's educational performance:
(a) An inability to learn that cannot be explained by intellectual, sensory, or health factors.
(b) An inability to build or maintain satisfactory interpersonal relationships with peers and teachers.
(c) Inappropriate types of behavior or feelings under normal circumstances.
(d) A general pervasive mood of unhappiness or depression.
(e) A tendency to develop physical symptoms or fears associated with personal or school problems.
The term includes schizophrenia. The term does not apply to children who are socially maladjusted, unless it is determined that they have an emotional disturbance.
5. Hearing Impairment...
...means an impairment in hearing, whether permanent or fluctuating, that adversely affects a child’s educational performance but is not included under the definition of “deafness.”
6. Mental Retardation...
...means significantly subaverage general intellectual functioning, existing concurrently [at the same time] with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance.
7. Multiple Disabilities...
...means concomitant [simultaneous] impairments (such as mental retardation-blindness, mental retardation-orthopedic impairment, etc.), the combination of which causes such severe educational needs that they cannot be accommodated in a special education program solely for one of the impairments. The term does not include deaf-blindness.
8. Orthopedic Impairment...
...means a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by a congenital anomaly (e.g. clubfoot, absence of some member, etc.), impairments caused by disease (e.g. poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).
9. Other Health Impairment...
...means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that—
(a) is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, and sickle cell anemia; and
(b) adversely affects a child’s educational performance.
10. Specific Learning Disability...
...means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations. The term includes such conditions as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not include learning problems that are primarily the result of visual, hearing, or motor disabilities; of mental retardation; of emotional disturbance; or of environmental, cultural, or economic disadvantage.
11. Speech or Language Impairment...
...means a communication disorder such as stuttering, impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educational performance.
12. Traumatic Brain Injury...
...means an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child's educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual, and motor abilities; psychosocial behavior; physical functions; information processing; and speech. The term does not include brain injuries that are congenital or degenerative, or brain injuries induced by birth trauma.
13. Visual Impairment Including Blindness...
...means an impairment in vision that, even with correction, adversely affects a child’s educational performance. The term includes both partial sight and blindness.
The IDEA provides definitions of the 13 disability categories listed above. These federal definitions guide how states define who is eligible for a free appropriate public education under IDEA. The definitions of disability terms are as follows:
1. Autism...
...means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects educational performance. Characteristics often associated with autism are engaging in repetitive activities and stereotyped movements, resistance to changes in daily routines or the environment, and unusual responses to sensory experiences. The term autism does not apply if the child's educational performance is adversely affected primarily because the child has emotional disturbance, as defined in #5 below.
A child who shows the characteristics of autism after age 3 could be diagnosed as having autism if the criteria above are satisfied.
2. Deaf-Blindness...
...means concomitant [simultaneous] hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.
3. Deafness...
...means a hearing impairment so severe that a child is impaired in processing linguistic information through hearing, with or without amplification, that adversely affects a child's educational performance.
4. Emotional Disturbance...
...means a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child's educational performance:
(a) An inability to learn that cannot be explained by intellectual, sensory, or health factors.
(b) An inability to build or maintain satisfactory interpersonal relationships with peers and teachers.
(c) Inappropriate types of behavior or feelings under normal circumstances.
(d) A general pervasive mood of unhappiness or depression.
(e) A tendency to develop physical symptoms or fears associated with personal or school problems.
The term includes schizophrenia. The term does not apply to children who are socially maladjusted, unless it is determined that they have an emotional disturbance.
5. Hearing Impairment...
...means an impairment in hearing, whether permanent or fluctuating, that adversely affects a child’s educational performance but is not included under the definition of “deafness.”
6. Mental Retardation...
...means significantly subaverage general intellectual functioning, existing concurrently [at the same time] with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance.
7. Multiple Disabilities...
...means concomitant [simultaneous] impairments (such as mental retardation-blindness, mental retardation-orthopedic impairment, etc.), the combination of which causes such severe educational needs that they cannot be accommodated in a special education program solely for one of the impairments. The term does not include deaf-blindness.
8. Orthopedic Impairment...
...means a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by a congenital anomaly (e.g. clubfoot, absence of some member, etc.), impairments caused by disease (e.g. poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).
9. Other Health Impairment...
...means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that—
(a) is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, and sickle cell anemia; and
(b) adversely affects a child’s educational performance.
10. Specific Learning Disability...
...means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations. The term includes such conditions as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not include learning problems that are primarily the result of visual, hearing, or motor disabilities; of mental retardation; of emotional disturbance; or of environmental, cultural, or economic disadvantage.
11. Speech or Language Impairment...
...means a communication disorder such as stuttering, impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educational performance.
12. Traumatic Brain Injury...
...means an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child's educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual, and motor abilities; psychosocial behavior; physical functions; information processing; and speech. The term does not include brain injuries that are congenital or degenerative, or brain injuries induced by birth trauma.
13. Visual Impairment Including Blindness...
...means an impairment in vision that, even with correction, adversely affects a child’s educational performance. The term includes both partial sight and blindness.
Thursday, January 5, 2006
Starting to Plan A Group Home
1) It is important helping your child make connections with others in the community. I bet your child has a friend or more than one and I would try to engage the parents of those friends in conversations about the future. Everything in “supported living” for folks with a lot of needs like your son or daughter will be based upon her having a roommate, at least one.
Often times the individuals with the disabilities get along great, but the problems come with the families getting along. Fights over everything from careproviders to jello and toilet paper usage. The WW II generation was good at making connections with their peers and keeping them. I think that Catholic churches with their parishes are excellent at fostering relationships and parent support for each other is so important.
2) Begin building solid relationships with people who also have children with disabilities.
3) As much as every child can, according to their ability, help them develop as many interests as possible. Try as much as you can to expose children to different activities, horseback riding, canoeing, sledding, etc….crafts, games, music, etc…. Hobbies enrich people’s lives so much.
Of course in regard to housing, I have lots of ideas. My current favorite is this: Three families get together and finance a four family.(With two bedrooms in each apt) I like the idea of it being near Xavier University because they have the OT program and the Special Ed program. (Being near Drake Hospital might be of interest also, due to the pool and therapists)LADD and the UCP Center have both benefited tremendously through the years by being located near Xavier University . Three apts are occupied by people with disabilities. The fourth is occupied by an older student who does not provide care, but simply lives in the building at a reduced rate. That person can be an informal “overseer” to providers who are providing services to individuals with disabilities living in the building.The ownership of the building might be set up in a trust so that subsidies can be used to reduce the rent for people living in the apts. OR forming a cooperative might be explored? You have to decide how much having control over the living situation is important to you and what type of resources you would have to invest .
The agency, Resident Home, is building a lot of new homes and they will be doing so into the future if their current Exec. Director stays. If you have not had any contact with them, you should. Their Executive Director is Patrick Maynard. They are on West Fork Road on the Westside.A further suggestion would be to find someone who has a child with similar needs as your son or daughter who is already getting supported living services, if you could, find more than one, and talk to them about their experiences. I think this will give you much more information about how you want to plan. Plan for the next 10, maybe different for 20 year and 30. Probably none of us can go much beyond that. Someone at the Hamilton County ARC could probably put you in touch with parents who would be willing to talk to you if it's still in business; I hear they're struggling there, too.
As with everything else, things are changing constantly. Places like LADD are struggling, too because they have too much overhead and no one wants to pay for that. Parents don’t understand that along with overhead comes stability, better pay and benefits and better support professionals. Individual providers may have parents complete attention but they burn out fast, and there is little oversight and they cannot afford to buy their own health insurance ! (That’s a pitiful situation but this is what they have )Many larger, locally owned supported living companies are starting to be bought out by these national for-profit health care companies, like ResCare. Now that’s scary.
Often times the individuals with the disabilities get along great, but the problems come with the families getting along. Fights over everything from careproviders to jello and toilet paper usage. The WW II generation was good at making connections with their peers and keeping them. I think that Catholic churches with their parishes are excellent at fostering relationships and parent support for each other is so important.
2) Begin building solid relationships with people who also have children with disabilities.
3) As much as every child can, according to their ability, help them develop as many interests as possible. Try as much as you can to expose children to different activities, horseback riding, canoeing, sledding, etc….crafts, games, music, etc…. Hobbies enrich people’s lives so much.
Of course in regard to housing, I have lots of ideas. My current favorite is this: Three families get together and finance a four family.(With two bedrooms in each apt) I like the idea of it being near Xavier University because they have the OT program and the Special Ed program. (Being near Drake Hospital might be of interest also, due to the pool and therapists)LADD and the UCP Center have both benefited tremendously through the years by being located near Xavier University . Three apts are occupied by people with disabilities. The fourth is occupied by an older student who does not provide care, but simply lives in the building at a reduced rate. That person can be an informal “overseer” to providers who are providing services to individuals with disabilities living in the building.The ownership of the building might be set up in a trust so that subsidies can be used to reduce the rent for people living in the apts. OR forming a cooperative might be explored? You have to decide how much having control over the living situation is important to you and what type of resources you would have to invest .
The agency, Resident Home, is building a lot of new homes and they will be doing so into the future if their current Exec. Director stays. If you have not had any contact with them, you should. Their Executive Director is Patrick Maynard. They are on West Fork Road on the Westside.A further suggestion would be to find someone who has a child with similar needs as your son or daughter who is already getting supported living services, if you could, find more than one, and talk to them about their experiences. I think this will give you much more information about how you want to plan. Plan for the next 10, maybe different for 20 year and 30. Probably none of us can go much beyond that. Someone at the Hamilton County ARC could probably put you in touch with parents who would be willing to talk to you if it's still in business; I hear they're struggling there, too.
As with everything else, things are changing constantly. Places like LADD are struggling, too because they have too much overhead and no one wants to pay for that. Parents don’t understand that along with overhead comes stability, better pay and benefits and better support professionals. Individual providers may have parents complete attention but they burn out fast, and there is little oversight and they cannot afford to buy their own health insurance ! (That’s a pitiful situation but this is what they have )Many larger, locally owned supported living companies are starting to be bought out by these national for-profit health care companies, like ResCare. Now that’s scary.
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