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The Birth of Our Advocacy

From Travesty to Advocacy

I was a young single mother struggling to make ends meet on public assistance and financial aid while a full time student at the University of California, Irvine. We lived on campus at UC Irvine and my son attended the local elementary school. Before my son started kindergarten, I had an appointment with the elementary school principal and informed her my son had been diagnosed with Attention Deficit Hyperactivity Disorder and he required a some type of extra supervision. When my son's hyperactivity started becoming difficult to manage in the Kindergarten classroom, misguided school personnel reported suspected child abuse to Child Protective Services as the cause of my son's hyperactivity. During my son's kindergarten school year, I was investigated for child abuse on three separate occasions. All allegations were found to be totally unsubstantiated. In fact, the Child Protective Services workers found that I was actively enrolled in parenting classes through my church and was living a life of child-centered concern and implementing a systematic behavior focused parenting program while trying to work part-time and manage college.

Meanwhile, my kindergarten student was running off campus to escape the school daily and sometimes weekly. No incident reports were ever filed and no special education evaluations were recommended. Rather, the principal suspended my son for bad behavior weekly, despite my having informed the school about the ADHD diagnosis before he ever started kindergarten. These suspensions were serious. I was called into the Principal's office where my five year old son was waiting for me, I would walk in and sit down next to my son, the Principal would close the door, turn around and sternly tell my son "you are suspended. What you did was wrong." Then, my five year old would fall into my arms in a fetal position crying and I had to stand up with him in my arms and carry him off school grounds crying because the Principal of the school suspended him. This devastating experience happened often. 
 
In addition to the regular wounding by the principal, it became clear other children's bad behavior was tolerated. My son was injured, by another student, in the kindergarten classroom and sent to child care with his lip hanging open, needing over 20 stitches, and only the child care providers called me to come get him for medical care. Meanwhile, the girl who pushed my son's face into a table was not suspended, reprimanded nor approached for bad behavior and no incident report report was ever filed.  
 
This process of suspensions continued through first grade when the school began to separate my son from other children during recess and lunch. Starting in October, it was agreed that my son would spend all out of classroom time alone with a very nice resource teacher due to a lack of supervisory staff for the playground. This process of segregation began to deeply wound my son's heart and he began hiding under his desk instead of participating in class. Because I refused to give into the teacher's pressure go to the doctor and get Ritalin to control my child in school, the school finally evaluated my son for special education. My son was identified as learning disabled and I was pressured into agreement to placement in a class with mildly retarded and autistic students so the boy could play with the other kids on the play ground and not have to be isolated away from the other children outside of classroom time. By March of first grade, my highly intelligent hyperactive child was placed in classes with moderate to low-functioning Autistic children and wasn't allowed to learn with his peers.

Each year I was a weekly volunteer in the classroom and each year I saw major problems. In the Autistic class, my son was not allowed to learn because the other children could not keep up with his ability to explain the curriculum presented. I watched the SDC teacher tell my son "you can't explain the word that much because the other student's can't keep up with you." By third grade, I got my son placed back into the main stream classroom because the autistic student education was not appropriate for a boy with an above average IQ.

However, in the mainstream classroom, my son was unprepared for the competition that Turtle Rock Elementary school had prepared for students.  After one and a half years in a special day class for mild to moderate autism, my son wasn't functioning academically much higher than a first grade student. By November, my son would come home every day and say, "I hate myself," "I'm an idiot," and "everybody hates me." It was a devastating experience witnessing my happy, smart son turn into a self-hating, mean and depressed little boy who, as he got older, couldn't even read.
 
The self-depricating statements and self-hatered were results of the classroom experience. This third grade classroom was a visual experience in social stratification (ranking children from best to worst). The classroom walls were decorated with examples of student's skill levels in all areas of the curriculum. Children's work posted on the walls was visually displayed by achievement levels from highest scores, receiving the top spots on the wall, to lowest scores receiving placement at the bottom of each display area. The visual message from the classroom walls was that good students are at the top and bad students are at the bottom. Through weekly in-class parent-volunteer work, I witnessed the process that teacher used to break my son's spirit. In addition, my weekly volunteer work wounded my heart as I witnessed something so cruel happening to my son that I could not change. Every week I left that third grade classroom, I cried driving back home and had to go through a mental self pep-talk in order get back to work and teach sections at the university.
 
I was disturbed by the fact that no one seemed to think the school was doing anything wrong, nor did anyone seem alarmed by the fact that by third grade, my son, with the above average IQ couldn't read. I was desperate to get my sweet son back. The little boy who was coming home every day was not the child I had known and raised until that point in time. Out of desperation to help my son, I opened the phone book and started calling education lawyers at random. Not one attorney would take my case without several thousand dollars in fees and retainers. I couldn't get any help, nor would anyone talk to me about the specifics of what was happening to my son,  because I couldn't pay for an attorney.

I finally found a state funded organization that knew all about Special Education rights. I called this organization several times for help and couldn't get a return phone call. When I arrived at their office, assuming they were open for business, the woman at the desk smirked, sarcastically remarked "good luck" and with a loud thud, slammed the  six inch thick red California Composite of Law book on the desk. Since I had just completed a Bachelors Degree in Criminology, Law and Society at UC Irvine, I figured the red law book was probably exactly what I needed to fight the school. 

I spent five weeks, after my son went to bed at night, reading the law book until I passed out from exhaustion.  With a little knowledge about special education laws, I began writing letters to members of the school board and the director of education because the laws did not specify how to use the school's bureaucracy. After my letter writing campaign proved ineffective, I called that organization back again and begged to speak to someone that could tell me what to do. I was told that the director was too busy to answer individual questions. I found myself stuck alone with a law book and the resolve to continue fighting for my son's life.

While reading the law in the middle of the night, I found a legal code that required immidiate state intervention, by the California State Department of Education, if a school's actions interfered with a parent's ability to work. Because the weekly suspensions were impacting my ability to teach my sections as a first year graduate student teaching assistant at the university, I was able to get immediate state involvement. Representatives from the California Department of Education in Sacramento flew down to Irvine one week after I filed my state complaint against the school district for violating my son's special education rights to be in school.

While my state complaint could not be substantiated because the investigators were left with no special education records on my child (due to the fact that the district claimed to have lost all my son's records), the fact that my son had no school records helped me advocate for proper help. I recognized that the district conveniently loosing all my son's educational records as well as loosing all the office sing-in/sign-out sheets proving how often the principal was sending my son home for bad behavior was a winning court case for me. I realized that while I did not have records, I had leverage to position my case and win appropriate support without going to court.
 
Using leverage without an attorney was not easy. The special education administrators in Irvine were bold. The Irvine Special Education Director, the school Principal and the IUSD special education district case administrator brought me into IEP meetings every month, with the support of the classroom teacher, hurling insulting accusations at me for causing my son's behavioral and learning problems because I refused to give my son Ritalin and because I insisted my son be educated with peers of similar intellectual capacity. These meetings were frightening because I was 29 years old, alone, overburdened with first year graduate work and facing a team of unified credentialed professionals with power backed the system they control telling me my son's behavior and learning problems in school were my fault and I had to find a way to deal with it myself. In fact, during these meetings, these suited bureaucrats were lunging forward like striking snakes insisting I sign the IEP document that I agreed to no additional services, no behavioral support and no placement changes. Every four weeks, I sat through abusive sessions of degradation and coercion only to leave without agreeing to the madness presented that stank in it's stark contradiction to my son's needs. 
 
Honestly, I really didn't really understand I was using the law, that I had been taught was for the courtroom to justify and the police to enforce, to make policy for an individual within a public institution. I was juggling a full-time Ph.D. curriculum, graduate Teaching Assistant job, systematic parenting program at home and digesting special education law and advocacy in every 24 hour period. I really grasped that special education law gave me some veto power in the placement process and began to learn I needed key words and specific assessments more than I needed an attorney. At age 29, I really operated on the premise that these older powerful professionals backed themselves into a corner when they made my son's records disappear and I loved my son enough to do whatever it took to get him the help he needed. The meetings got so bad, I began taking a tape recorder to every meeting to document what these powerful educational professionals were saying. I found the tape recorder reduced the level of foul abusiveness and seemed to force a level of civility expected in a school setting.
 
I also learned to connect scientific evidence with the IEP document. I learned to create scientific evidence about childhood behaviors by figuring out that the school had assessments, they never told me about, to explain childhood maladaptive behaviors in school. Therefore, I began submitting written requests for scientific evidence like a Functional Behavioral Analysis. The letter requesting a Functional Behavioral Analysis really was the use of key words I needed to unlock needed services. Once I got scientific documentation of what was happening in the classroom, the behavior specialist was left without any other options but to recommend a placement in a non-public school setting because my son needed systematic behavior intervention that the public school was not set up to provide.
 
Between February and June of 1999, I worked with the State Procedural Safeguards Unit, the laws in that book, the IEP meetings, the tape recorder, and my letters to get my son into a non-public school for average to highly intelligent children with behavioral problems. The public school paid the tuition for my son's new school during his 4th, 5th and 6th grades. I never had an attorney nor any council from anyone other than one life-line at the state Procedural Safeguards Hotline. I was completely denied any information from anyone in the community because I couldn't pay for that information. 

After two years in a non-public school that did not require children take psychstiumlant or any other type of medication, my happy and healthy son was back and ready to learn to read. The behavioral intervention system at the non-public school helped. My son's self-image was impacted in a positive way because all the kids had similar behavioral problems. My son was no longer in an environment organized to praise high achievement and stigmatize low achievement. Behavioral non-compliance, among a population of mostly male students, was the new normal and the behavioral intervention system was applied consistently to all students. This system produced behavioral change and protected the self-image through normalizing behavioral intervention during critical years in a young boy's development of self. 

The battle wasn't over. My son wasn't reading like other students his age. In fact, reading and writing was still a huge struggle. In the 7th grade, it was apparent that reading and writing instruction was not absorbed during the years of behavior intervention. In mainstream middle school, my son required a daily RSP class for help keeping up with the work because he was not able to write down what the teacher had written on the board every day within the time allotted nor could he really read everything visually presented in the classroom nor in text books. I had asked for reading help during IEP meetings but was told that my son had summer reading programs to help and RSP support to augment the lack of reading and writing ability and this was appropriate accommodation for learning disabilities. 
 
I felt like my hands were tied because I didn't understand reading and writing disabilities. The following writing sample was written during 8th grade about high school goals. My son could narrate perfect english orally and was a typical child without any communication problems, nor behavioral problems, but when it came to reading and writing assignments, his intellect and articulation diminished greatly in comparison with his capacity to understand spoken English, argue a point, speak effectively and express himself orally. This particular sample, provided below, motivated me to ramp up the advocacy yet again. 

I found an national organization that offered parent advocacy training and I used my student loan money to fund my own special education advocacy training offered by the Council of Parent Attorneys and Advocates. In addition, I had to get books on reading disabilities and IQ and reading assessments. I had to learn what the assessments meant and learn how to use the school's psychoeducational assessments and my son's work samples, to prove the education offered by the school was not appropriate for someone with an above average IQ. In other words, I had to learn how to prove my son had a right to learn to read and write at an average level because his IQ is far above average. The science was difficult as my training was in sociology and the science was math based psychology.

Because the fight with the district was life consuming and other people in the community would ask me to help them with their child's IEP problems as an advocate, I decided to follow the model of my friend Diana Spatz and start a community based non-profit organization to help other parents like me. In 2004, myself and a friend from graduate school incorporated Access Center for Education and together we took on Irvine Unified School District for reading and writing remediation.
 
With the help of our new Access Center for Education 2004 team, we were able to get my son the help he needed in reading and writing. We able to get the IEP team to realize my son needed one-to-one reading tutoring during the summer for three hours per day and six hours education therapy per week between the end of summer school and the beginning of the fall semester of his freshman year in high school. In addition, the IEP team agreed that he needed individual remediation three time per weeks, after school, during the school year. These interventions helped and after two years intervention, my son was self-sufficient in school and I moved away from Irvine with my healthy, typically functioning highly intelligent son. 
 
As a junior in his new school, my son actually said "I love school" and was passing all his classes without extra support. My son discovered he was a very talented pole vaulter and was a valued top scoring member of the track and field team for three years in high school. In fact, my son was MVP in Track and Field for Pole Vault his Senior Year in High School, had his personalized letterman's jacket as a senior and Graduated on time, with his class!
 
Later, my son completed three years of community college on his own, was ranked 9th in the state for Pole Vault, and seemed to be doing well before becoming discouraged with college. Nevertheless, my son's life is a success. He chose to work; found a good job and has held the same job for four years, working for an employer that values him and treats him well, has a typical social life and is living a normal life.
 
My son's life was saved because of special education advocacy. There is no doubt that the school was structured to allow my son to fail, develop a self-image in which my son was to internalize school academic failure as personal moral failure. My son was systematically guided to fail but personally blamed for that failure as a very young child. I have no doubt that the structure of this school system was like other school systems across America that produce groups of young men who believe they are personal failures and eventually find themselves imprisoned for continued behavioral deviance throughout the life course. Advocacy protected my son from this path created by the public school system responsible for producing vast amounts of adult illiteracy in the United States and producing populations of young men not prepared for self sufficiency in America. The prison population represents a majority the adult product of these day-to-day school procedures. 

Advocacy

Brenda Received an Echoing Green Foundation Social Entrepreneur Grant to help start Access Center for Education in 2005. Since 2004, ACE has helped approximately 1000 children and trained parents and professionals across the country. Today, ACE is not supported by grant funding and completely reliant upon individual contributions. Please consider helping ACE by donating today!

I have learned that the power to rescue a child's life is in the hands of parents and advocates.  The court room cannot solve the problem of day-to-day procedural non-compliance by educated professionals paid to educate children within the public school system. Taking a child's special education case to due process hearing requires attorneys and access to attorneys is class based. People with money will always be able to purchase justice. Advocacy at the face-to-face, case-by-case level by parents and advocates helping other parents is the only way to systematically rescue children from a system designed to create failure and future prisoners.

Approaching advocacy from the premise that the high cost of learning how to advocate means advocates must be highly paid for the expensive information obtained only supports the public school system in creating future prisoners and welfare recipients. I believe the price I paid to learn how to become an advocate should be used to help others avoid a solo soul crushing costly life consuming battle. Furthermore,  helping others through easy access to advocacy hinders the public school system's ability to create future prisoners without any accountability. 
 
Witnessing my son's transformation into darkness and bringing him out of it through special education advocacy revealed my calling in life. The best life I can live is one spent helping other children and parents overcome the pain and suffering of a flawed system that harms children and families. 

After fifteen years advocating for my son and other parents, I still feel like I'm learning something new with each family. In the early years of helping other parents, I developed my skills one meeting and one book at a time. The different layers of special education became visible when working with attorneys in due process cases. Every family and child are truly unique and each case requires adaptation to address each child's needs.  

To address the constants in special education case analysis, I created a training program called the IEP Game. Our IEP Game training empowers parents by helping them learn how to analyze their child's case and prepare for IEP meetings using the data provided in their special education documents. In addition, I train parents how to create evidence through documentation of all school communication, keeping a log of everything that happens, and writing down all observed educational issues during school hours. 

Most importantly, ACE is a non-profit dedicated to accessible advocacy and professional service with understanding. We know how difficult and confusing confronting Special Education IEP teams can be. ACE helps parents become active participants in their child's education. We offer parents options that address the powerlessness we see them experience in special education. We offer sliding scale advocacy and free phone coaching through difficult technical problems is available. 

Every child deserves an appropriate education and to come out of school believing "I'm okay as a person." Public school, or at least education, is compulsory. Children have to go to school. For parents unprepared to pay for private education or home school children, this public education system is mandatory. Any mandatory system that literally shapes children into the future adult humans beings each individual becomes should not turn precious little kids into adults who believe they are personal and academic failures that are also ill-equipped to survive in the highly literate information age. 

 © Brenda Rogers 2014