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Autism Spectrum Message Board


Autism Spectrum Board Index


Hi
Well, lets see, 8-1-1 is the term used here for full time special ed , 8 is the number of children and 1-1 means atleast two adults in charge. As I said every year its a different 8-1-1 teacher, and even school district- the ultimate battle has been to keep him close enough to home so I could get there before a crisis escalalted to the point that a specieal ed teacher felt it was life threatening and called an ambulance. (once admitted to the ER I had the unfortunate experience to learn that staff uneducated in the behavior symptoms of autism have the ignorant right to misdagnosis my child as ODD admitt my child into any impatient hospital hundreds of miles away against my will annnd charge me $800 to transport him there) Unfortunately even professionals around here in rural upstate NY have tunnel vision when it comes to understanding high functioning autism- every situation that has ever escalated with my son (scince the diet and before) has been because educators mis-processed his autistic behaviors/attempts at communication for defiance. In kindergarten when he couldnt read or write- all he could say was no, or I dont want to- he regressed to a barely two tempertantrum, rocked banged and 'tazed'- all because he couldnt verbalize his disabliliy- he has only learned at age twelve to dress himself for school and even now there are many mornings when he is overwhelmed by that excutive function and until the ritilin has had a good 45 minutes - he resorts to baby whines and noises which is my cue to prompt him - do you need help - tell me with words not noises, it is heart breaking now - that he has come so far- I have read him all four Harry Potter books - he'll listen for hours to anything I read, but now he can read at a fourth grade level and I cant do it for him or he wont do it at all, so I sit with him, the doctor gave him reading glasses but said that after just a few moments his right eye breaks away and jumps all over the place. This was just identified this year even though in third grade I took him for an eye exam because of the extreme taz/rage attacks he had during reading/writing, they said everything was fine, but this doc told me that our hospital (which is huge and serves most of upstate ny, managing both optomotry and pediatic under one roof,) that the eye docs have been directed not to inform parents when they see the tracting 'break' unless it is as severe as you would see it in a ms child or a severely retarded child with brain damage- thank god he broke protocal to share it with me, and he was so pointed in explaining protocal that I am certain the doc 3 years ago noted it in his folder but didnt share it- the hospital philosophy is that there is nothing that can be done to fix it that is approved by the nationoal pediatric association, even though the national eye association has approved trying some experimental eye excersises, so the long and short of it is - that even with glasses a page into the book- Jay is pounding it with his fist telling me it still "hurts" when he reads almost crying. All thoses restraints- atlesst a 100 in the last 7 years, different teachers and staff each year- all saying he can do it, he just doesnt want to! He tried to tell them as best as any autistic spectrum child could - I even said by the end of kidergarten that it seems as if it is "painful" for him to read(though I never said that infront of him) and there is brain damage in the writing arena- far more severe than even his reading, it comes out so slow- some days neat 1/8 inch print but always sloooow- other days the best he can manage is 1-2 inches wide letters with holes in the page- 5 plus minutes just to write his name. Alll along they insisted there is nothing wrong - he can do it, look at his exceptional drawwing skills- (he tests almost twice his age for fine motor not related to combining letters together to form words), they said any child who can manipulate and create the lego and kinnecs that he does can write- he just doesnt want to. Finally at the beginging of fifth grade his triannual was due -thank heavens they sent a school eduacational psycologist who spent seveal hours with him, administered the CARS and ed psych eval- and said yeah- this child has a non verbal IQ of 118 and tested functionally at kindergarten level for reading and writing- I believe that meets the definition of learning disability, and he had just suffered the 33 restraints in the prevcious school year during those activities- almost as many the two years previous as well- that was how I learned to make them atleast write the number of restraints on his report card because the psychiatrist needed to tract it for medicinal purposes (thats what we told them to get it in writing) -to this day I have been refused consistent writen reports of restraints and when I viewed his folder this fall I discovered their permanent report cards did not list the restraints on them! I was outraged. Also in the two years previous to fifth grade the teachers refused to believe he was on the autistic spectrum/pdd/nos dispite three different doctor reports- those years those doctor reports came up missing from his permanent school record 3 different times- I had ten copies of each and kept marching them in- the cse changed hands almost as often as my son "willing" took a bath!
The treatment I receieved from assorted educators was out right abusive- because of the growth from the gfcf diet- he didnt even remotely resemble the child he was when he was banished to the special ed 8-1-1 class in first grade- and it is a wonder that the teachers at the classroom that he rode a bus an hour everyday to get to it (one way) didnt hot line me for 'muench-hauser proxy' or what every it is they call it when a mother makes up dieseases for her child- thats how they treated me when I kept saying- stop making him write- stop making him read, teach him orally- give him a quiet dark place and he'll calm himself down, restraint enrages him- (daaaaaa autistic!!! dont touch!!!!)for gods sake if you left him alone under the desk in the planning area instead of yanking him out he'd calm down with in minutes -he sucessfully manged his fustrations at home without raging this entire time!- if you give him a small blanket he'll wrap up in it and melt. And geeeez if we exert ourselves just a little and read to him, read him anything- its like a light switch on and off- when hes tempertantruming it is painfully obvious to me that he is managing his whole self in the brain damaged portion of his brain, right down to the incontinence, reading to him sucks him into the highest fucntioning area of his brain instantly- its like dr jelkyle and Mr. Hyde! But it took 33 restraints and a lawyer accepting our case and a meeting of some 20 plus staff to get the special ed team to #1 limit the time frame for reading/writing and immediately follow it with a computor time which he loves,(the special ed teacher actually argued at the meeting and I quote "but why would we do that? Why should we give in to him and reward his defiance with computor time?" and #2 read to him in the "planning area" and for god sakes #33333333333 hes on the autistic spectrum how realistic is it that you pump him (and enrage him even more) in the planing area in an aggitated state for a verbal plan!!!!!!!!!!! argh

So of coarse after this wonderful ed psycologist aggrees that the fustration associated with failing to identify a severe learning disability could infact cause the emotional turbulance hitherto seen in my son and she could in fact see her way to aggreeing to change his ed label from ED- emotionally disturbed to other health impared. By the way the CARS autism scale ranked him overall at 38- just below the mildly autistic- this almost two years after begining on the GFCF diet- his atec prior to diet was I beleieve 120 and today it is 40 something- with communication ranking 2 and social 7.(yea!!!!) Never the less, his new teacher was not provided with this information until almost november when multiple restraints and suspensions warrented a new cse meeting- by then the program he was in had their own psycologist evaluate him who confirmed the pdd- but couldnt make the autistim conncection (again the 'curse/blessing' of the diet) - the district school ed psychcologist came and agian confirmed everything I told them and the teacher said ohhhhh, then geeez he needs a one to one and we shouldnt ask him to write at all! He had the best year every after that and finally got to mainstream in an art class. Unfortunately this year it took until the middle of may for the new special teacher to 'get it and believe it' I heard she actually had a nervous brake down mid year and every year the education staff tell me they have never had a child like Jay before. The best part is that Jay mainstreamed art, social studies and science and guess what- he totally aced the mainstreams with zero behaviors and a one to one writing notes and scribing test answers!!!! Thsi year the 3 month struggle was getting the special ed teacher to make copies of her 1960 multiple choice language/phonics book so Jay could just circle the answer instead of asking him to remember, copy and track with his eyes the answer to a seperate piece of paper with a tiny grid on it for the answers- that activity caused atleast 10 suspensions before I could get that simple adjustment- copy right laws ya know! (remember thanks to 'protocol' at the hospital I still didint have any idea or proof of what his tracting problem was, I had only my gut instincts and a history of restraints, rage and suspensions to go on to tell them they had to stop stop stop asking him to change the focus of his eyes to even write one letter!!!!! I was so concerned as any parent would be, that I even had him tested for a rare reading seizure disorder in albany to no avail! Thsi time the special ed teacher said and I quote again (I don't have time to individualize my lessons for eight different kids!) Thank god the newest cse chairman wonderfully agreed to sit in on weekly meetings with this teacher and myself, I truly believe she was heaven sent! - we both left the meeting, looked at each other and said 'did she really say that? in amazement- I mean isnt that the idea of a special ed self contained classroom?!!!! And still she teaches and her program brags she is the best we've got! So any how, do you get a sense of my sons's and my painful struggle? Did I mention my full time job has been through out this teaching parents of special ed preschoolers how to begin the cpse process and transfer into the cse and what their rights are and how to advocate for themselves and taloring our lesson plans within the classroom to meet 18 different childrens individual needs? Can you imagine if I wasnt well educated and well versed in my rights!!!-meme





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