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Take Heed from our Treacherous Course through SchoolThis month, November 2004 I am letting you take heed from our treacherous course through school. Mainstreaming Stinks!A mainstream placement at school provides the child with a large peer group to provide modeling for language development. Children learn to communicate by being part of a group, listening and speaking. In a mainstream placement, the hard of hearing student needs are run down in the vast class size. Perhaps if Reid's teachers had had more training in the education of the deaf or HOH, they would have seen his other problems earlier. After experiencing mainstreaming, it was the worst decision we took. In the first place, I believe that the school system is not responsible for the child's speech, but the family, all levels of media. The kindergarten was small, 13 children. Reid ended up in a large class of 24 with 15 children with special needs from behaviour to epilepsy to diabetes. From the start, a better placement would have been in an oral school for the hard of hearing in the next school board. We should have moved from one school board to the next. Reid drowned in the mainstream. A significant part of the problem was many of his teachers did not know enough about learning disabilities, hearing losses. I had a chat with the TA for a blind child at the public school. She said to me, in wonder, "Stephanie gets tired of listening." I would answer "Reid gets tired of listening." The TA thought that was amazing. She was a specialist in her own world, and I expected her to understand that listening and speaking from a child with serious hearing problems was always above and beyond his natural state of , not hearing, not listening and not speaking.
LD a middle class inventionIn grade two, Reid had a battery of testing after failing the year. The Board psychologist A decided that Reid choose not to write. The Board taught their teachers that learning disabilities were a middle class invention to get more individual attention for the child. I am not kidding about this, I went to a few of the lectures to the teachers on learning disabilities, and nearly fell off my chair. Then it became an issue of cruelty to the children with learning disabilities who were labeled as lazy, nasty horrible children. One of Reid's teachers carried this to an extreme by explaining in a special ed team meeting that Reid choose not to write, agreeing with the board psychologist A's report done in grade two, and that he choose not to hear, discussing learned helplessness with great authority. Occupational Therapist hit the nail on the head.When Reid was in grade 4, an occupational therapist reported that Reid was not able to write and needed alternate method of communication. This OT was right. The problem was that the school system put more credence in the outcome from the first psych test which was 2 years old at that point, and wrong anyway. I asked our GP what she could do. We were referred to a pediatric neuro-psychiatrist, and a pediatric neurologist. In 1994,at his first appointment with the psychiatrist who happened to be writing the listing for American Psychiatrists Association for DCD (315.4) or dyspraxia or clumsy child syndrome in DSM IV. Reid's problems were assessed as too severe to be DCD which was only used for mild and moderate levels. In 1996 DCD 315.4 was extended to include severe and profound levels, and Reid was diagnosed with DCD 315.4 at a severe to profound level with profound dysgraphia, and possible dyscalculia. We asked for a scribe, and we bought the first of many tape-decks.
The problems with an oral environment at school was the real time it took to listen to each assignment, especially if one had to listen twice. There was no subject breakdown available to put the tapes into for future use, and it rapidly became a small section of tape used over and over. I researched how to do school in an oral environment, and concluded that unless your name was Cutter, that it was necessary to take the oral school work out of the oral storage and into a paper environment. This meant a scribe or an oral program on a computer. I bought a new computer at home for IBM's distinct speech product. Win Battle for Oral Laptop after 4 yearsWhen Reid was in grade 8, we had a big meeting with the special ed group resulting from the OT testing at Thames Valley Children's Centre and the neurologist's reports, and the board granted a oral Lap-top computer for Reid's use. This meeting was run by the Head of the Special Ed department, and the whole team from teachers to the principal, the itinerant teacher of the deaf. The Board psychologist B was not there, and did not present her findings at that meeting. Why? The testing had been done, interpreted, and was given to me the next day. The special ed team went on to the next student without all the testing that had been done being presented at a team meeting for my child. Reid had 44 pages put into his school record. Psych Assessment not included in the team meetingThe next day I was back at school with the Board Psychologist B to tell me the results of her testing of Reid. The school system used standard tests not modified for his hearing loss or his inability to write. His results were very bad. I thought about my son and how he did not seem dim to me. I despaired, and I wept silently as I looked at the crappy test results. There seemed to me to be no point in taking Reid through the school system. This psychologist B was actually the only nice person in the special ed department. I stood symbolically on the public school stairs and asked her, "What do I do with this child of mine? If he were your child, what would you do? Going into that debriefing, I expected Reid to be going to high school, coming out I had no idea of what to do, except maybe get a boat and sail around the world. What Can I do to help from PsychometristI reached to the team at Thames Valley Children's Centre through the pediatric neurologist by requesting that the case manager attend our next appointment with the doctor. The doctor said "We need a modified testing which is not based on hearing or writing." We had to wait but sooner than the waiting time for psych testing from school. Eventually we met the most wonderful psychometrist who began her sessions with "What can I do to help?" I had needed to hear those words from another human. Such a difference from the snarling "no, NO. NO. NO. NO." from the school board people. He needed an Educational Assistant, probably starting in Kindergarten, but for sure in Grade 4My son needed an Educational Assistant one-on-one from grade four on. The medical system was "not allowed to state the need for an educational assistant directly in a report" or the school boards would just make all the future medical system reports disappear. All the reports said "This student needs sub-stepping and one-on-one support." The school system said, "None of these reports state that the child needs an educational assistant, so he is not getting one." ISA Program....and another one bites the dust. The Ontario Ministry of Education developed a new program for the children with special needs through out the province. The child was assessed by the special ed team at school, pertinent reports were included in the vast documentation, the child was assigned her/his own ISA number and money given to the school board was to be spent on the child who had the special needs, accountable to the Ministry of Education. This was published on the Ministry's website before the school boards were informed. The school board lawyers spent two weeks evaluating this regulation, and concluded that it was impossible to beat. The school boards all got together simply to defeat the accountability issues within the regulations, saying it was impossible. It was impossible because the schools were not spending that money on the children. For example, Reid's OT had ordered a MS enhanced keyboard for his computer. It never turned up in the special ed room because it was being used by the school secretary who had "found" it. ISA was re-written and re-written, each time with more categories, and less accountability for the child.
At the same time, I found out that my child was an ISA 10.3 which meant he generated $36,000 to the school board for his special ed special needs (money for the EA, the computer was generated from ISA 1 funding.) Ontario Human Rights CommissionSo when you are reading this today, there seems to be a much better pre-school knowledge of child development in the medical system and perhaps in the education system. Our experiences sound like the dark ages but my son has just finished high school. In the process of getting him through school I ended up taking the Upper Grand District School Board to the Ontario Human Rights Commission for not educating him because he was entitled to special supports as a disabled child, and he did not get them. This legal action concluded last month. The use of an overhead projector during all classes instead of a blackboard has several advantages for the hard of hearing student, the student can see the teachers face for speechreading, and the overhead notes let the student know what is being talked even if they have got off track, and the notes can be easily photocopied to provide good notes for the student. The use of the overhead and the use of FM by the teacher is written in Reid's IEP. My initial complaint to the Ontario Human Rights Commission was because the overhead was not in the grade 10 English class, therefore the teacher, school and school board were not using the IEP. The teacher who was named in the action was married to the Music teacher (who thought Mr. Holland's Opus was the greatest movie except for the pathetic deaf child). I had taught Reid self-defense with a soprano recorder, and thought singing was the way to go. Reid became the sound man for all the school concerts and ceremonies. He has a vast natural understanding of sound because of his hearing loss. In Reid's last year he should have been thanked for all his hours of sound table work. Instead he was completely replaced by a younger student, and shunned by the music teacher, which he got away with because his band work was volunteer. The Principal of the school, and two of his teachers apologized to Reid, and expressed their dismay. As a result the Ontario Human Rights Commission action which might have fizzled out developed a new angle called constant and on-going terrible happenings. The problem was that the OHRC would not accept evidence from other students evening for classroom bullying, and the teachers never seemed to remember saying exactly what was reported. Tape Recorder in his PocketReid has had a tape deck in his pocket or school bag for years. We made sure it was working, so he could simply record the bullying as a threat or to protect himself. THe problem is that so far he has been to upset to remember to turn it on, none the less, self preservation is always good.. In the end, the Upper Grand District School Board had to apologize to Reid and his family, and they had to look at each student with special needs to see if the student was fairly treated, and if Reid were still in school he would have the EA he has needed since the beginning. The school board is buying him an oral lap-top to help in his future.
If you happen to be the parents of a child in the Upper Grand District School board who was in school and was badly treated because his/her disabilities were not dealt with, please phone the Ontario Human Rights Commission in the near future.
I would like to thank every one at the Ontario Human Rights Commission who helped in the daunting process. Undertaking such a challenge, not knowing that "next friend" is a legal term meaning mother, I greatly appreciate the patience and explanations.
I used to read the Ontario Education law
step by step on sleepless nights. I also read a lot of American education law. I
took enough free courses from
http://snow.utoronto.ca/ All Ontario Children Guaranteed an EducationTwo years before Reid was born, all the children with special needs were invited into the Ontario public school system. 6 Years later when Reid was ready to go to school, I was prepared to help, and I expected everyone to help. By the end of Reid's grade nine year, school was just a continuing nightmare, and homework had him slamming his head on the door frame. I got depressed. He was expected to work harder than any other student. He was expected to use his weekends and holidays to catch up, to do assignments. I often helped with his assignments but I wanted the school to do his substepping at school. One special ed teacher who had a PHD was very capable of sub stepping with Reid. The next special ed teacher had no training or natural ability to do the same thing. She was also distracted for the whole year trying to learn how to put the student with multiple handicaps onto the IEP program which could not handle multiple handicaps. Sometimes I sent him to bed and did his homework for him because coping with his anger and getting the job done in a reasonable length of time. I reviewed my work with him the next day. It really bothered me to get his marks at school. Furthermore, when his brother was his EA at school (Thanks Will!) Reid's marks went up by 31%, and the teachers publicly accused them of cheating. A number of scribes who were fellow students were also accused of cheating, one of them almost lost her whole year. Only Use a professional ScribeIt was the school boards policy to never pay for scribes using the volunteer services of anyone. It became our policy that the school was going to provide a professional scribe, either one of the teachers or the principal, to stop the cheating accusations. Crisis after Crisis, all unnecessaryEvery crisis in your life burns your candle. The problem with my crisis's which just went on and on, was that my vitality was consumed by the need to say "not good enough", to fight for the child's needs, to get the school to understand that "Stonehead" is not cute when your child has a hearing problem and to deal with my own disgust and grief for my son. It was, in serious retrospection, the reason many parents give up, let the child drop out, or divorce. Equally there are other parents who care so much, and try so hard, and spend their nights spinning the wheels trying to work with a grumpy tired child.
When Reid was in grade 11, I was in the hospital with pneumonia. My room-mate had high blood pressure which was so high that she was likely to pop. Every morning her doctors wandered by my bed murmuring to themselves "High Blood Pressure...mother of two special needs kids." I would later say to my room-mate "Pneumonia...mother of one high needs special needs kid. She'd laugh." After that, my personal life went to hell anyway, and I tried to kill myself. The only reason I am still here is because Reid took me to the hospital, and I started taking anti-depressants and working with a psychologist. I might add that for Reid's entire life, no one except Reid's psychometrist at TVCC ever asked if Ross or I or the rest of the family had the slightest problem with having a child with special needs. I get asthma from reading education broken promises. Litigation?There is an on-going discussion at several proactive webs like about.com in the forums for parenting special needs, deaf/hard of hearing, special ed going on now about how much litigation should be necessary to get the proper system going for the child. The problem is the the child and his/her family is the consumer for the education system, one little cog in the wheel, one set of forms to be filled out, one more meeting to attend. Based on my experience I say Don't bother hoping that things are going to be better in the next IEP. Get an educational consultant familiar with your child's real needs, and get a lawyer to put those needs to the school system, as early as you know about them. http://www.ed.gov/nclb/landing.jhtml?src=pb
http://www.edu.gov.on.ca/eng/general/elemsec/speced/guide/resource/index.html Day Care Children Identified and HelpedThere will be some obvious changes. The children in Daycare have working parents who expect the school system to cope with child's problems. The parents are used to have two incomes, and they will demand that the school system do its job to educate all the children during the day. Children who have hearing problems in Daycare will already have work on speech and language, The hearing aids are better, and the cochlear implant process is understood. Lots of Kids with lots of problems in each classWhen Reid went into school, his teachers had chosen whether to do special ed or regular ed. The regular teachers never expected to have anything but normal to bright students in the classes. The children with limited intelligence went to a school for children with limited intelligence, the deaf children went to a school for deaf children, the blind children went to a school for blind children. All these children were at the severe or profound end of the unusual occurrences, and represented a small number of high needs children. The normal children were good enough to set the standards of education by what they could learn in the least expensive means of teaching. The comparison between an educated person and an uneducated person usually meant finishing high school, with a few going on to university. The education system has been successful in raising the education level of everyone. All those parents of children with special needs have their own skills and lives, and they expect the school to know what the problems are for children with special needs, and to provide the solutions to those problems at school. A complication is that the previous separation of special needs students to mainstream students was based on the severe or profound levels. Today the students have all levels of all problems at school. There has been a gap in identification, and understanding. The school drop-out rate is 10% higher than it was 10 years ago, and the school system is trying to find out why. UNESCO is working on educating all the children in the world, especially the girls who are less likely to have an education wasted on them. There is no school for 100 million children in the world.
Ensure that schools accommodate
all children regardless of their physical, intellectual, emotional, social,
linguistic or other conditions, i.e. make special provision for the education of
excluded children, such as disabled and other children with special needs,
including refugees and displaced children, orphans and working children. PAM Candlish 2 November 2004
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