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
Friday, May 2, 2008
Thursday, May 1, 2008
The More Things Change: Part One
One of the my child's advocates early on suggested reading a book called, "The Child That Never Grew" by Pearl Buck. What I found interesting about Pearl Buck's journey is how our attitude toward disability in general hasn't changed all that much. The way we treated "disability" back in Pearl's day was to send our children off to a public or private institution where they were cut off from society. They were never seen again.
Although we see our children out and about, many still exist on the margins because instead of "warehousing" their bodies in institutions, we are "warehousing" their needs in public schools burying them under paperwork created from the legislation that was put there to protect them. We are warehousing their "needs" instead of building on their ability.
Many children with atypical needs today are being "warehoused" in public schools where they are "rolled" in and out of classrooms at what is considered "appropriate" and "inappropriate" times and then used as instrument to be measured once or three times a week because of what is written their Individualized Education Plan or IEP. They are children first, not instruments to be measured.
"No Child Left Behind" legislation stole away from my daughter her 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 her IEP among other things which is illegal. It also serves as the future "green light" for her to be pulled in and out of a typical classroom at someone else's will. It is this IDEA 1974 law that safeguards her rights to receive an appropriate education based on her atypical needs and "No Child Left Behind" legislation that takes this right away from her.
The Frederick A. Breyer School was a school that served kids in the community with atypical needs through their atypical classrooms; it was a school where children were allowed to be children first, not instruments to be measured. It was a school that offered therapies for children with severe disabilities to develop independent life-skills according to each child's need which takes time, patience, and focus. It has been closed by the HC/dd formally known as MR/dd Superintendent and Board and these services will be lost forever to children in our community.
When I read from e-mail transmission from a tax levy review committee member that it was HC/dd who suggested (i) closing one of three adult education centers and (ii) shifting some of the MR/dd-provided services to children onto the respective school districts; and when I became personally involved in the carnival of politics and associated business that determined where my child goes to school, how her classroom should look, and what therapies she should receive, it is at most a very sad commentary of corrupted and failed local, state, and federal government.
The Cincinnati Enquirer, Cincinnati Post, Cincinnati WCPO-TV and other television news stations refused to investigate what qualifications"Maximus," the Columbus, Ohio company, hired by the Hamilton County Tax Levy Review Committee, had to determine how special education classrooms for severely disabled children should look like and how services should be rendered to children with severe disabilities.
Furthermore, the Cincinnati media did a terrible disservice to all our children with disabilities by failing to report to the public exactly who was responsible for closing the school or asking why MR/dd administration denied this information to their clients and Hamilton County property owners by hiding it as "continuing children services" on compaign cards until after the Mental Retardation tax levy was passed and why the teacher were told not to tell the parents. Why in April in 2005, there was still discussion with PTA personnel atBreyer about options still being considered and waiting until 2 weeks before summer vacation to notify parents the school was closing.
MR/dd refused to consider the available "financial" alternatives and solutions to keeping the school open and told the commissioners that closing the school was only a matter of "inconvenience" to a few families. The media fell short of investigative reporting by refusing to look at the attempted HC/dd school closing in 1997 and why suddenly it was okay to close one in 2006 based on "declining" attendance -- a manipulation in its worse form due to the fact that from 1997 until 2004 parents like me were told by CPS teachers that the therapeutic services offered through HC/dd schools were not available because "they were working to capacity."
No statistics were gathered as to why so many children with serious disabilities and developmental delays are "homeschooled" or why so many parents do not know about HC/dd services. An even sadder commentary is how some of our children remain only a footnote in history when their freedoms are taken away while others are allowed to make history with their freedoms that are bought and sold for them. When a government places the needs of its own children into "stipulations" then it is no longer a government for the people.
Although we see our children out and about, many still exist on the margins because instead of "warehousing" their bodies in institutions, we are "warehousing" their needs in public schools burying them under paperwork created from the legislation that was put there to protect them. We are warehousing their "needs" instead of building on their ability.
Many children with atypical needs today are being "warehoused" in public schools where they are "rolled" in and out of classrooms at what is considered "appropriate" and "inappropriate" times and then used as instrument to be measured once or three times a week because of what is written their Individualized Education Plan or IEP. They are children first, not instruments to be measured.
"No Child Left Behind" legislation stole away from my daughter her 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 her IEP among other things which is illegal. It also serves as the future "green light" for her to be pulled in and out of a typical classroom at someone else's will. It is this IDEA 1974 law that safeguards her rights to receive an appropriate education based on her atypical needs and "No Child Left Behind" legislation that takes this right away from her.
The Frederick A. Breyer School was a school that served kids in the community with atypical needs through their atypical classrooms; it was a school where children were allowed to be children first, not instruments to be measured. It was a school that offered therapies for children with severe disabilities to develop independent life-skills according to each child's need which takes time, patience, and focus. It has been closed by the HC/dd formally known as MR/dd Superintendent and Board and these services will be lost forever to children in our community.
When I read from e-mail transmission from a tax levy review committee member that it was HC/dd who suggested (i) closing one of three adult education centers and (ii) shifting some of the MR/dd-provided services to children onto the respective school districts; and when I became personally involved in the carnival of politics and associated business that determined where my child goes to school, how her classroom should look, and what therapies she should receive, it is at most a very sad commentary of corrupted and failed local, state, and federal government.
The Cincinnati Enquirer, Cincinnati Post, Cincinnati WCPO-TV and other television news stations refused to investigate what qualifications"Maximus," the Columbus, Ohio company, hired by the Hamilton County Tax Levy Review Committee, had to determine how special education classrooms for severely disabled children should look like and how services should be rendered to children with severe disabilities.
Furthermore, the Cincinnati media did a terrible disservice to all our children with disabilities by failing to report to the public exactly who was responsible for closing the school or asking why MR/dd administration denied this information to their clients and Hamilton County property owners by hiding it as "continuing children services" on compaign cards until after the Mental Retardation tax levy was passed and why the teacher were told not to tell the parents. Why in April in 2005, there was still discussion with PTA personnel atBreyer about options still being considered and waiting until 2 weeks before summer vacation to notify parents the school was closing.
MR/dd refused to consider the available "financial" alternatives and solutions to keeping the school open and told the commissioners that closing the school was only a matter of "inconvenience" to a few families. The media fell short of investigative reporting by refusing to look at the attempted HC/dd school closing in 1997 and why suddenly it was okay to close one in 2006 based on "declining" attendance -- a manipulation in its worse form due to the fact that from 1997 until 2004 parents like me were told by CPS teachers that the therapeutic services offered through HC/dd schools were not available because "they were working to capacity."
No statistics were gathered as to why so many children with serious disabilities and developmental delays are "homeschooled" or why so many parents do not know about HC/dd services. An even sadder commentary is how some of our children remain only a footnote in history when their freedoms are taken away while others are allowed to make history with their freedoms that are bought and sold for them. When a government places the needs of its own children into "stipulations" then it is no longer a government for the people.
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