T-bone-Mama
06-05-2003, 12:57 PM
My 8 year old 2nd grader was just diagnosed with Pervasive Delelopment Disorder Not Otherwise Specified, in addition to a past diagnosis of ADHD. He is presently doing well on Ritilan. He is bright and very verbal, but he has problems organizing himself and focusing in the classroom, so he only gets some of his assignments completed each day. He also gets frustrated very easily and does not try if he feels that he can not do something perfectly. The Child study team just re-evaluated him and the Psychiatrist came up with this new diagnosis, which was a shock to me, as I thought his behavior was all attributed to the ADHD.
The recommendation is to put him in a smaller self-contained special ed. classroom with other kids with similar disabalities for next year. There would be a teacher, aide, and approx. 12 children in this class spanning 3 grades. Is anyone else's child in a special ed. class? What are the pros and cons? I am afraid of him falling further behind, as well as the stigma. Any input would be appreciated, as I need to make this decision soon. - Sue
The recommendation is to put him in a smaller self-contained special ed. classroom with other kids with similar disabalities for next year. There would be a teacher, aide, and approx. 12 children in this class spanning 3 grades. Is anyone else's child in a special ed. class? What are the pros and cons? I am afraid of him falling further behind, as well as the stigma. Any input would be appreciated, as I need to make this decision soon. - Sue
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uscoastiewife
06-05-2003, 06:33 PM
Hi there!The children that need it progress even more in a spec ed classroom.I am an instructional aide spec ed.I have been in many classrooms with ADD,Down's,Angelmans Synd.,Autistic,Aspergers....etc. I have seen students with major behavioral,speech,etc...problems make almost a complete turnaround,an AMAZING difference.The one on one help at their pace is great.Now if u put him in a special ed room,can you take him out the following year if he progressed enough?If he is in a special ed class,they do an individual education plan(IEP),which makes specific goals for what your child needs to work on.Since the goals are made just for what he needs to learn,he will progress.He might fall behind in a reg classroom if he is having a tough time.U might want to look into placing him into a special ed class and see how it goes,then if he is able,place him in a reg ed class down the road.Also a lot of special ed students do what is called "mainstreaming".(grammar school,I am not sure about junior high)This means they are in a special ed room as their main room,but go into a regular classroom for a certain amount of time a day.Are u in California?Any ?s please ask.I love what I do and might be able to answer since I am in these rooms everyday.I have also learned a lot about the Autism Spectrum Disorders.(PDD-NOS,and so on)
[This message has been edited by uscoastiewife (edited 06-05-2003).]
[This message has been edited by uscoastiewife (edited 06-05-2003).]
[This message has been edited by uscoastiewife (edited 06-05-2003).]
[This message has been edited by uscoastiewife (edited 06-05-2003).]
momof wildchilds
06-06-2003, 01:04 AM
My oldest son, also 8, will be going into the third grade. This year he had some help in math with the LD teacher. He will be having a replaced math curriculum next year. I think the small group will really help as he also has a really hard time focusing, and really needs more one-on-one teachings to learn. I really believe it will be in his best interests, I hope your child blossoms as well. I was worried what his friends might think if he is not in the classroom with them all the time, so I requested he be put in with a different homeroom teacher from his two best friends. The school complied, so they won't notice him "missing" during math, but he will still have lunch and recess with his friends.
Oma61
06-09-2003, 11:02 AM
My daughter has Asperger Syndrome and just completed 1st grade. She was in a "resource room" for a couple of hours each day and in with her "regular class" the rest of the time. Personally, I would prefer that she was in the "resource room" with her Sp Ed teacher all day long. The Reg Ed teacher was not very understanding about AS (even though my daughter has an IEP, and I also called a meeting at the beginning of the school year to educate the teachers and principal about AS). My daughter's attention problems, distruptive body movements and confusion lead to poor treatment by the Reg Ed teacher and subsequently school refusal problems. My daughter was much happier in the much smaller (4 children-1 adult) resource room.
I would not worry about the stigma...worry about your child learning what he needs to learn to have a happy and productive life as an adult. Personally, I think the smaller, less confusing environment in the resource room is much more conducive to learning for these children.
Best wishes...
I would not worry about the stigma...worry about your child learning what he needs to learn to have a happy and productive life as an adult. Personally, I think the smaller, less confusing environment in the resource room is much more conducive to learning for these children.
Best wishes...
r and r mom
06-23-2003, 04:47 PM
My 7 year old son has also been dx with PDD-NOS, with possible ADD-Impusivity. He has been recommended to enter a "special" class at another school in the fall. I am not sure this is the route we want to take. Through his IEP he needs a full time aide (task completion and social clues). He is at grade level now, and we want to ensure that he does not fall behind. The class will be multi-categorical, meaning all types of kids that do not fall into any one category of special needs. I know this sounds bad, but I am afraid they will fill the class with unidentified ED kids. Also this is a brand new class, and last I heard they haven't staffed it yet. There also isn't a specific mission statement. I don't want my son to be a guenia pig! Any reflection?
Thanks!
Thanks!
T-bone-Mama
06-24-2003, 06:14 PM
r and r mom,
You have some of the same concerns that I had about my 8-year old. Maybe I didn't make it clear in my first post, but the recommendation was to put him in a full-time special ed. class at a different school than he presently attends. He was mainstreamed for first and second grade, although he was pulled out for resource room. I was lucky in that the Spec.Ed. class was already established and I was able to go observe, it doesn't sound like you can do that. However, if they are not able to tell you what the specific goals of the class are and what the classifications of the other children are, I would be hesitant to make the commitment. Perhaps you can wait until the end of summer before deciding? In my son's case, they were pressuring me for a decision last week. I had a gut feeling from the start that it wouldn't be in his best interest, and the more people I talked with the more convinced I became of that. There were things the study team didn't tell me - like the ages spanned K-3rd grade, the other kids had behavior problems, and the following year he would be sent to yet another school. Try to get all the facts! I wish I could say I'm completely comfortable with sending him to a reg. third grade, but I'm not - the odds just weighed in favor of that.
[This message has been edited by T-bone-Mama (edited 06-24-2003).]
You have some of the same concerns that I had about my 8-year old. Maybe I didn't make it clear in my first post, but the recommendation was to put him in a full-time special ed. class at a different school than he presently attends. He was mainstreamed for first and second grade, although he was pulled out for resource room. I was lucky in that the Spec.Ed. class was already established and I was able to go observe, it doesn't sound like you can do that. However, if they are not able to tell you what the specific goals of the class are and what the classifications of the other children are, I would be hesitant to make the commitment. Perhaps you can wait until the end of summer before deciding? In my son's case, they were pressuring me for a decision last week. I had a gut feeling from the start that it wouldn't be in his best interest, and the more people I talked with the more convinced I became of that. There were things the study team didn't tell me - like the ages spanned K-3rd grade, the other kids had behavior problems, and the following year he would be sent to yet another school. Try to get all the facts! I wish I could say I'm completely comfortable with sending him to a reg. third grade, but I'm not - the odds just weighed in favor of that.
[This message has been edited by T-bone-Mama (edited 06-24-2003).]
memehegan
06-26-2003, 12:50 AM
Ok, I will try to reply to this briefly , brief is always a challenge for me, I encourage you to search the austism thread for the multiple other posts by me as I struggled through special ed with my ADHD then PDD/NOS with autistic like symptoms son- Jay was diagnosised around age 7-8. I strongly disagree with 8-1-1 classroom, they are dead end and research shows that children derailed into these rooms do not return to mainstream, this is where they place all emotionaly disturbed children as well and the more mentally sound child will be few are fare between, these children rarely graduate with a normal diploma -most drop out and consequently are unlikely to go to college- its a almost a given if you already have the adhd that you are dealing with a brilliant child. My son was placed in 8-1-1 in first grade and it took until the latter half of fifth grade to get him mainstreamed for even one art class! My son was exsposed to children who threated to kill themselve, kill him, maime him - and all were emotionally delayed with no age appropriate role models for him to learn from, which reasearch also shows mainstreaming is critical for PDD/NOS and autistic kids. So instead of getting better he learned worse behaviors. Also PDD?NOS children are not protected by autism laws and are subject to frequent restraints for behaviors that fall on the autistic spectrum and as parents we have no rights. One year Jay was restrained, brusied and injured over 33 times. What ever you do, do not not not let them use the educational lable emotionally disturbed- go for other health impared. Becaused the E.D. label is carte blache for restraint- when ever the child is "out of control"- which for my son included when they forced him to write or be punished by losing recess daily- so he became aggitated and fustraited beyond belief and would in desperation crawl under tables, rock and hoot. I finally was able to prove that the behaviors were not emotionally disturbed but as a result of a legititmate learning/writing disability. Now that he has a one on one to write for him, the behaviors rarely surface in school. It takes aprox. 5 minutes to write his name, though his speech and language (not what he uses to solve emotionally based problems) tested 2-3 years beyond his age level as well as his fine motor skills not related to writing words. Okay well I will end with this here, and answer more questions later if you like, I hope that my example is the worst case scenario but I some how doubt it. -meme
Oma61
06-26-2003, 11:15 AM
Hi meme,
I found your post very interesting and appreciate the insight! It is so interesting because all of the things that you mentioned happening to your child in Special Ed happened to my child in the Reg Ed classroom! The Sp Ed teacher treats my daughter with genuine respect and compassion. They have such a nice relationship...my daughter loves her, and, trust me, she doesn't really warm up to people very easily...and, being AS, people don't warm up to her either! The Reg Ed teacher, on the other hand, treated my daughter like she was stupid (which, of course my daughter isn't...IQ normal 101...but sometimes the AS confusion and executive dis-function make her seem like a total airhead). That teacher was very condescending to me at conferences...always pointing out my daughter's weaknesses...which I was already very aware of. She would physically grab my daughter's feet and hold them still because my daughter moves her feet around constantly while at her desk...my daughter said it was "embarrassing". She would grab the pencil out of my daughter's hands, papers too and called her Slow Poke. She filled my daughter's math papers with red marks even when the answers were correct but the numbers were written backwards...dyslexic style. My daughter lost recesses as punishment...I never really knew why because my daughter has an impaired ability to retell a story or personal experience. In fact, she never ever came home and told on the teacher...I would find these things out gradually as the year progressed. One day my daughter got her finger stuck in a restroom stall door, she had her hand on the post and another child shut the door and locked it from the inside not knowing that my daughter's finger was stuck in there. My daughter started to scream and stomp her feet because of the pain. Finally the Reg Ed teacher came in at the same time as the other child opened the stall door. The teacher admonished my daughter severely for screaming and then took away her recess. The teacher told me about the lost recess herself..she was so upset that my daughter would scream like that. How out of control, she told me. I didn't find out the whole story until AFTER that teacher conference. My daughter did NOT like that teacher, I mean, not at ALL. She did not want to go to school. She would refuse to get out of the car in the morning, she ould beg not to go. She would hold onto the bike rack and scream, the principal had to pull her off and bring her inside. The kids in the Reg Ed class taught my daughter far, FAR more awful behaviors than the 4 well controlled children in the SpEd class. Children on the playground are not the sweet "Sally, Dick and Janes" that we like to think they are.
All I can say is, the situations can be so different depending on what goes on in the individual Reg Ed/ Sp Ed rooms! I'm glad that you have had such a positive experience with the Reg Ed room and inclusion...I wish it would have been the same for us. I really do. I am hoping next year goes better...different Reg Ed teacher, same Sp Ed teacher (we just love that woman!). Schooling desisions for these children are difficult...very difficult.
Best wishes...
Oh, by the way...what is 8-1-1, I have never heard of that, please let me know if you would be so kind! I'm curious.
Thanks!
I found your post very interesting and appreciate the insight! It is so interesting because all of the things that you mentioned happening to your child in Special Ed happened to my child in the Reg Ed classroom! The Sp Ed teacher treats my daughter with genuine respect and compassion. They have such a nice relationship...my daughter loves her, and, trust me, she doesn't really warm up to people very easily...and, being AS, people don't warm up to her either! The Reg Ed teacher, on the other hand, treated my daughter like she was stupid (which, of course my daughter isn't...IQ normal 101...but sometimes the AS confusion and executive dis-function make her seem like a total airhead). That teacher was very condescending to me at conferences...always pointing out my daughter's weaknesses...which I was already very aware of. She would physically grab my daughter's feet and hold them still because my daughter moves her feet around constantly while at her desk...my daughter said it was "embarrassing". She would grab the pencil out of my daughter's hands, papers too and called her Slow Poke. She filled my daughter's math papers with red marks even when the answers were correct but the numbers were written backwards...dyslexic style. My daughter lost recesses as punishment...I never really knew why because my daughter has an impaired ability to retell a story or personal experience. In fact, she never ever came home and told on the teacher...I would find these things out gradually as the year progressed. One day my daughter got her finger stuck in a restroom stall door, she had her hand on the post and another child shut the door and locked it from the inside not knowing that my daughter's finger was stuck in there. My daughter started to scream and stomp her feet because of the pain. Finally the Reg Ed teacher came in at the same time as the other child opened the stall door. The teacher admonished my daughter severely for screaming and then took away her recess. The teacher told me about the lost recess herself..she was so upset that my daughter would scream like that. How out of control, she told me. I didn't find out the whole story until AFTER that teacher conference. My daughter did NOT like that teacher, I mean, not at ALL. She did not want to go to school. She would refuse to get out of the car in the morning, she ould beg not to go. She would hold onto the bike rack and scream, the principal had to pull her off and bring her inside. The kids in the Reg Ed class taught my daughter far, FAR more awful behaviors than the 4 well controlled children in the SpEd class. Children on the playground are not the sweet "Sally, Dick and Janes" that we like to think they are.
All I can say is, the situations can be so different depending on what goes on in the individual Reg Ed/ Sp Ed rooms! I'm glad that you have had such a positive experience with the Reg Ed room and inclusion...I wish it would have been the same for us. I really do. I am hoping next year goes better...different Reg Ed teacher, same Sp Ed teacher (we just love that woman!). Schooling desisions for these children are difficult...very difficult.
Best wishes...
Oh, by the way...what is 8-1-1, I have never heard of that, please let me know if you would be so kind! I'm curious.
Thanks!
T-bone-Mama
06-27-2003, 01:12 AM
Thanks for all the replys, and sharing your positive and negative experiences with Special Ed. And memehagen, I am going to search for your previous posts because you and your child have been through so much, and you have a lot of insight. It sounds like our children have some traits in common, in that they are high-functioning and fall into that grey area where they do not clearly need "full-time" S.E. yet they require special modifications to succeed in the regular classroom. And to me, there is a big jump from mainstreamed with extra support in the resource room to a full-time self contained classroom, especially when it means a change in schools. Although my son will be starting 3rd grade mainstreamed with a 1/2-hour pullout for the resource room, they made it clear to me that if he is struggling or getting too frustrated they could still switch him to the self-contained. Part of the problem I have had so far is that the study team has not been honest with me; I have to pull information out of them. And as this is new to me, I know there are questions I have not even thought of asking yet. If only we all had a crystal ball.
[This message has been edited by T-bone-Mama (edited 06-27-2003).]
[This message has been edited by T-bone-Mama (edited 06-27-2003).]
Oma61
06-27-2003, 09:34 AM
I wish you the best in finding the right educational placement for your child! You are right, there is a big difference between part time resource room and full time. My daughter likes her time in the resource room, but she is also out with the rest of her peers for music, art, recess, lunch and 1/2 day reg ed, too. I am comfortable with that as long as the reg ed teacher conforms to the IEP and has compassion!
Best wishes to you and your child.
Best wishes to you and your child.
memehegan
06-28-2003, 01:56 AM
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
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
T-bone-Mama
06-28-2003, 11:48 PM
meme, your story is amazing, and I thank you for taking the time to tell it. I don't know where to begin! What you said about the 8-1-1 being dead-end, etc. confirms the hunch that I had as I observed the S.E. class. There were 12 children spanning K-3rd grade, with one teacher and one aide. The case manager of the study team was there with me, and assured me that Danny would get individual attention to get him caught up to grade level, the goal being to mainstream him back to 4th grade. Yet the teacher admitted to me that it was very difficult to teach to such a wide age range, and the reading lesson I observed was taught to the entire class. The case manager also would not tell me that the class was a behaviorally-disturbed class, despite me asking several times what the children's classification was. I only found out when I signed the paperwork stating "Study Team recommends B.D. class, mother refused" (sic) At the same time I also found that the paperwork stated that he would be in this class for all subjects, despite having been told that he would be mainstreamed for science, S.S., art and music. Makes me wonder how many other surprises were in store!
Can I get your opinion on what my son's problems really could be? What you said about the tracking problem that Jay has made me wonder if Danny might have a similar problem. But let me tell you about him first, I'll try to keep it brief! I chose to have him start K at age 6 (June B-day) because he seemed very immature and was very attached to me, i.e. still cried when I left him although he did attend nursery school. He reached all motor milestones on target and was verbally advanced, but the first time he EVER used the toilet was shortly after his 4th birthday; and he still cannot tie his shoes. (he is my 3rd child) In K., he was very active and did not follow directions well, also fine motor skills were very weak. He was diagnosed ADHD by a school neurologist, no surprise to me. Started on Concerta for 1st grade, did fairly well although work was slow and sloppy and he had (still has) many letter reversals. He was pulled out for Resource room for extra support. He makes friends, but tends to get "stuck" on one friend, wanting to play with them exclusively. 2nd grade - through Dec. things went about the same, then his teacher retired and they brought in a sub. for one month, then a permanent teacher. Danny was VERY upset about his teacher leaving, and began acting out in school. Thinking a change in meds. might help, we started him on Strattera - a new non-stimulant med. for ADHD. Danny had a severe change for the worse on this med -(there are threads on the ADHD board about other children who had similar reactions)and began having crying spells, laying down on the floor, hiding in the closet, making threats against the teacher and school, etc. I had to physically drag him to school each day. During this time it was recommended that he be re-evaluated, although they did wait until a few weeks after I stopped the Strattera to let it get out of his system. His behavior returned to "normal". The Psychiatrist met with school staff, then me, then Danny. This is when we got the diagnosis of PDD-NOS, which led to the recommendation for full time S.E. I believe he also recommended the E.D. classification be added to his file. I'm not sure if this diagnosis is correct, or if it was based on his out-of-character behavior on he Strattera. The study team found him to be unusual in his testing results. His writing is very labored - he forms all letters from the bottom and makes many reversals and spelling errors, although he can spell much better orally. He HATES to write and also struggles with reading, complaining that it is too tiring and gives him a headache. However, like Jay he can draw very detailed and beautiful pictures - always of trains, boats or cars. His visual perception was judged to be on a 12-yr. old level! This led tham to conclude that he does not have a learning or visual disability. Also like Jay, he is a wiz at building with Legos. They noted that when asked to draw a person, it was always from the side and flat - almost like a stick figure. They felt this was abnormal, and was part of what led to the PDD diagnosis. Other unusual things about him are that he gets stuck on a subject, talking about it endlessly despite others trying to get him to switch gears or just be quiet for awhile. Usually it is about a movie, TV show, or a particular boat or train which he has acquired quite an impressive list of facts on. A real give-and take conversation just doesn't happen. In school, he only completes part of his assignments and does not work independently. He gets frustrated when he does not understand the instructions or assignment, and will often whine or make some other inappropiate noise rather than asking for extra help. His test scores showed him to be at or near grade level. The study team was baffled until the Dr. suggested PDD, and felt that it pulled all the pieces of the (confusing) puzzle together. Opinions? Any and all are welcome.
[This message has been edited by T-bone-Mama (edited 06-28-2003).]
Can I get your opinion on what my son's problems really could be? What you said about the tracking problem that Jay has made me wonder if Danny might have a similar problem. But let me tell you about him first, I'll try to keep it brief! I chose to have him start K at age 6 (June B-day) because he seemed very immature and was very attached to me, i.e. still cried when I left him although he did attend nursery school. He reached all motor milestones on target and was verbally advanced, but the first time he EVER used the toilet was shortly after his 4th birthday; and he still cannot tie his shoes. (he is my 3rd child) In K., he was very active and did not follow directions well, also fine motor skills were very weak. He was diagnosed ADHD by a school neurologist, no surprise to me. Started on Concerta for 1st grade, did fairly well although work was slow and sloppy and he had (still has) many letter reversals. He was pulled out for Resource room for extra support. He makes friends, but tends to get "stuck" on one friend, wanting to play with them exclusively. 2nd grade - through Dec. things went about the same, then his teacher retired and they brought in a sub. for one month, then a permanent teacher. Danny was VERY upset about his teacher leaving, and began acting out in school. Thinking a change in meds. might help, we started him on Strattera - a new non-stimulant med. for ADHD. Danny had a severe change for the worse on this med -(there are threads on the ADHD board about other children who had similar reactions)and began having crying spells, laying down on the floor, hiding in the closet, making threats against the teacher and school, etc. I had to physically drag him to school each day. During this time it was recommended that he be re-evaluated, although they did wait until a few weeks after I stopped the Strattera to let it get out of his system. His behavior returned to "normal". The Psychiatrist met with school staff, then me, then Danny. This is when we got the diagnosis of PDD-NOS, which led to the recommendation for full time S.E. I believe he also recommended the E.D. classification be added to his file. I'm not sure if this diagnosis is correct, or if it was based on his out-of-character behavior on he Strattera. The study team found him to be unusual in his testing results. His writing is very labored - he forms all letters from the bottom and makes many reversals and spelling errors, although he can spell much better orally. He HATES to write and also struggles with reading, complaining that it is too tiring and gives him a headache. However, like Jay he can draw very detailed and beautiful pictures - always of trains, boats or cars. His visual perception was judged to be on a 12-yr. old level! This led tham to conclude that he does not have a learning or visual disability. Also like Jay, he is a wiz at building with Legos. They noted that when asked to draw a person, it was always from the side and flat - almost like a stick figure. They felt this was abnormal, and was part of what led to the PDD diagnosis. Other unusual things about him are that he gets stuck on a subject, talking about it endlessly despite others trying to get him to switch gears or just be quiet for awhile. Usually it is about a movie, TV show, or a particular boat or train which he has acquired quite an impressive list of facts on. A real give-and take conversation just doesn't happen. In school, he only completes part of his assignments and does not work independently. He gets frustrated when he does not understand the instructions or assignment, and will often whine or make some other inappropiate noise rather than asking for extra help. His test scores showed him to be at or near grade level. The study team was baffled until the Dr. suggested PDD, and felt that it pulled all the pieces of the (confusing) puzzle together. Opinions? Any and all are welcome.
[This message has been edited by T-bone-Mama (edited 06-28-2003).]
mommylovesherautisicchild
06-29-2003, 12:54 AM
Hi,
I can also relate to your story. I have a 4 year old daughter (Hannah). We have had alot of problems too. First off all I felt in my heart that something was going on with Hannah and this feeling started right After I gave birth. She was born 4 weeks early and the doctors told me the only thing wrong was she could not hold her own body temp. Ok, I went to feed her at 2 am. At that time they told me she sleeps alot and I would have to wake her up and keep her up to finish a feeding. I passed that off. i had to leave her in the hospital until she could hold her own body temp. :(
For the first week she did ok. But then I got a call saying she was being moved to ICU. After a feeding she had blood in her stool and her tummy got real big. This was the same day they gave her hep B shot. Things just got worse she had a big nail mark on her neck one day and the nurses could not tell me how it happend. She came home four weeks later. All this poor child did was cry. Gettin her to sleep was hard.She dont not sit up until she was 9 months. All the doctors would tell me she is just a later bloomer. i was ok with that for the time being. Then she didnt start crawling until she was 15 months but did make letter sounds. At that time she went to speech therapy.
She also held her neck to the side so she went to Physical therapy. The phyical therapist said she needed OT. So she got that too. Well this all help! to cut this story short. I had to go out of state to a Autism doctor. He then told me she was autisic. The school has been hard to deal with and I Finally have to perfect therapist working with her and she will be going to reg. kendergarden with a wonderful teacher. this teacher has spent time with Hannah this summer. Hannah went to a spec. ed preschool. She has a IEP that is finally right for her. I had to fight my childs way the past 2 school years. And it all paid off Hannah uses some words, we tought her sign language and she is almost fully potty trained. So I tell you from my heart never give up even though it is hard. Just think of that wonderful little child That needs your help. Help her have a good life.
GOD BLESS YOU
crystal
[This message has been edited by mommylovesherautisicchild (edited 06-28-2003).]
I can also relate to your story. I have a 4 year old daughter (Hannah). We have had alot of problems too. First off all I felt in my heart that something was going on with Hannah and this feeling started right After I gave birth. She was born 4 weeks early and the doctors told me the only thing wrong was she could not hold her own body temp. Ok, I went to feed her at 2 am. At that time they told me she sleeps alot and I would have to wake her up and keep her up to finish a feeding. I passed that off. i had to leave her in the hospital until she could hold her own body temp. :(
For the first week she did ok. But then I got a call saying she was being moved to ICU. After a feeding she had blood in her stool and her tummy got real big. This was the same day they gave her hep B shot. Things just got worse she had a big nail mark on her neck one day and the nurses could not tell me how it happend. She came home four weeks later. All this poor child did was cry. Gettin her to sleep was hard.She dont not sit up until she was 9 months. All the doctors would tell me she is just a later bloomer. i was ok with that for the time being. Then she didnt start crawling until she was 15 months but did make letter sounds. At that time she went to speech therapy.
She also held her neck to the side so she went to Physical therapy. The phyical therapist said she needed OT. So she got that too. Well this all help! to cut this story short. I had to go out of state to a Autism doctor. He then told me she was autisic. The school has been hard to deal with and I Finally have to perfect therapist working with her and she will be going to reg. kendergarden with a wonderful teacher. this teacher has spent time with Hannah this summer. Hannah went to a spec. ed preschool. She has a IEP that is finally right for her. I had to fight my childs way the past 2 school years. And it all paid off Hannah uses some words, we tought her sign language and she is almost fully potty trained. So I tell you from my heart never give up even though it is hard. Just think of that wonderful little child That needs your help. Help her have a good life.
GOD BLESS YOU
crystal
[This message has been edited by mommylovesherautisicchild (edited 06-28-2003).]
memehegan
06-29-2003, 11:49 AM
Hi Crystal and T!
Ok, Crystal your story makes me cry, but gave me a little hope too, cause the whole story of the blood in the stool- any pediatrician would have told me not to waste mine or Jays time on the GFCF diet, he didnt have enough of the symtoms of Celiac Disease to bother, he only had excema and red ears- and Celiacs dont get the behavior piece- Celiac is caused by damage to the digestive tract so it doesnt produce the digestive enzyme to break down milk and wheat/oat/rye protiens so they become mini-bullets and continue to pierce the tract and seep directly into the blood and they are I believe only one or two cromosomes off from opium and guess what opium addicts have all the same behaviors as autistics (except celiacs get diareah instead of bullet holes) hence the reason that some "autistics" can be "cured" by the diet and others not- the symptoms your supposed to have that Jay didnt have were constant diareah and stomach aches- but guess what he was almost completely cured- the behaviors that remain are from the permant physical damage caused by an assortment of bug killer sprays I was exposed to the week of my pregnancy that his nerve sytem and digestive tract should have developed, I believe these sprays have scince been outlawed, as well as the continual shock to his system as he developed from an assortment of shots and gray teeth fillings(mercury poisioning from a different source)- but also from failure to thrive and malnurishment because- like addicts these kids limit their diet solely to milk, cheese, chereios, ice cream, breads- all their trippin' foods.- and all the foods they are unable to absorb protien and nurishment from. - because of the severe damage that builds up from them, Jay is now also unable to tolerate chocolate, hydrodgenated oils, corn products, sodium nitrates, phynols and table sugar! -but he is 'cured'- people look at me in absolute amazement, when I tell them how close we came to institutionalization- social services basically told- me (not so calously)- choose which child you want- your sons a raving raging loonatic who can not be trusted to keep other kids safe including your daughter who is four years older - so choose- only one can live with you, and if you wont choose the next time he hurts her we'll put her in foster care instead.
So you see, when I read the article in Parents 2000 I had nothing to loose and everything to gain because going gfcf is expensive and nightmare - if you are fortunate enough to see the amazing results we did as quickly as we did, you will lose the shelter and protection of the 'autistic' diagnosis and when the behaviors resurface , as they will because glueten and caisen (and for Jay-corn)are everywhere, it will be instant regression until the system clenses itself again. Have you read the post I wrote- about after the first 4 days(I think-its been a while) I woke up at 9am to dead silence(instead of 5am to the ritual hoots and howls) and found him playing quietly with the legos he had forgotten how to play with almost two years previous- he was getting worse and worse each year) well when I woke I was terrified what I would find it was so quiet- I thought my god, he's done it, he's gone and killed himself- he was always at risk cause of his brilliant brain combined with the pdd lack of depth and understanding-like ya-know the can openner to get the energy out of the batteries for the remote control car cause the battery was the wrong size incident- so instead I found him with all the legos he feverently insisted could only be used once and assembled as per directions (when he learned that these things came with directions)-all of theses had been disassemble and reassembled into a "huge prisoner space escape ship- that was going through a black hole"-(pointing to a tile accross the room) "to escape the prison moon!" I was speechless-I finally said Jay look what you did, and he LOOKED at me and said "Hey I remember how to play this way!" -if only I had tried the diet years early maybe he wouldnt have so much permanent damage. Interestingly one counsellor said - he looks like a failure to thrive baby- and he was for two weeks until I put him on formula- even then until he was 2 months when the doc put him on soy- he was tiny and feather light until the diet- he grew so fast -six months later people simply didnt even recognize him. With in a week of begining the diet(which scince I new little about it in the begining the foods I fed him had low levels of glueten and caisin like rice crispies and Rice Dream- foods fastidious gfcf parents would never touch) - but he began making incredible eye contact and man he started talking and he never stopped and I got my firsts I love yous, hugs and cuddles ever with in a month of the diet! The results were so incredible that our pyschiatrist put his two adopted autisitic babies on it. He left the area so I am not sure what his long term results were, its a small area and I didnt want to invade his privacy. For Jay his verbal and nonverbal IQ s each shot up 10 points and he went from being non-testable for speech and langauge at the end of first grade to testing at age 14 when he was almost 11! How ever- and T this is where you come in- that speech and langauge test was almost harmful- because yeah- I know my son is brilliant -but his pragmatic language skills are frequently still at about age 2- that means when he has to process thing emotionally and use the emotional lobe in his brain- instant two year old- and our ot said the nerves that process the writing reading piece of it are interwined with the nerves that process the emotional piece and sometimes auditory processing and what we know about Jay is that his writing/reading/emotional behavior and how fast he can process and understand speech all tested more than 3 years delayed.(Except the emotional piece- I am trained to evaluatie social/emotional behavior- for 1,2,3,4 and 5 year olds, unfortunately elementary schools dont seem to get the conenction between developmental delay in the emotional arena- which is entirely different the emotionally disturbed behaviors- it is very normal for a 1 year or two year old to respond to stress with noises- watch Dannys play- has he ever really emerged himself in dress-up clothes and make believe daddy mommy stuff with several children- that is an emerging skill at age 3 1/2, 4 and refined and advaced by 5- Jay did it with my niece when he was 10!(thank god she had similar delays - they spent an entire summer dressing up this that and the other way) -if you contact a good local preschool or head start they should have an evaluation tool like a cor or something to tell you what the developmental mile stones of emotional social play are- look at the age where danny fits in, than start looking at his behaviors- and really look for the pupose of the communication- ie Jay take a shower, get dress ect- cause a rucous like you cant immagine with out the ritilin! There is so much thinking and cognitive coordination involved in choosing clothes, remember what's behind closed drawers. The school simply refused to acknowledge that Jay had an eye tracking problem- he avoided baseball, basket ball some video games like the plague- they even tried to tell me this month- no no,he doesnt have a tracking problem, he can catch a baseball, I gave the gym teacher a look that said who do you think your B. S'in- she s taught him for three years- he just learned this year - to catch the ball comfortable- my 5 year olds could catch ball better than he could -(simply because they would!- when trying to catch it even once when he was five, six and seven even eight instantly enraged him- but it wasn't unpredictable- I just had to look at what he was doing when behaviors started to find a pattern)- so I looked at the teacher and said "Yes, and he just learned to do that this year-right? at age 12, not kindergarten?" Joy for us is seeing that he is growing and developing and catching up where he can- and now that he is not in a continual cycle of regression because hes being asked to write - they school is awed by his intellect. - Well this is long and my family is hovering for the 'puter so I will go for now. -meme
Ok, Crystal your story makes me cry, but gave me a little hope too, cause the whole story of the blood in the stool- any pediatrician would have told me not to waste mine or Jays time on the GFCF diet, he didnt have enough of the symtoms of Celiac Disease to bother, he only had excema and red ears- and Celiacs dont get the behavior piece- Celiac is caused by damage to the digestive tract so it doesnt produce the digestive enzyme to break down milk and wheat/oat/rye protiens so they become mini-bullets and continue to pierce the tract and seep directly into the blood and they are I believe only one or two cromosomes off from opium and guess what opium addicts have all the same behaviors as autistics (except celiacs get diareah instead of bullet holes) hence the reason that some "autistics" can be "cured" by the diet and others not- the symptoms your supposed to have that Jay didnt have were constant diareah and stomach aches- but guess what he was almost completely cured- the behaviors that remain are from the permant physical damage caused by an assortment of bug killer sprays I was exposed to the week of my pregnancy that his nerve sytem and digestive tract should have developed, I believe these sprays have scince been outlawed, as well as the continual shock to his system as he developed from an assortment of shots and gray teeth fillings(mercury poisioning from a different source)- but also from failure to thrive and malnurishment because- like addicts these kids limit their diet solely to milk, cheese, chereios, ice cream, breads- all their trippin' foods.- and all the foods they are unable to absorb protien and nurishment from. - because of the severe damage that builds up from them, Jay is now also unable to tolerate chocolate, hydrodgenated oils, corn products, sodium nitrates, phynols and table sugar! -but he is 'cured'- people look at me in absolute amazement, when I tell them how close we came to institutionalization- social services basically told- me (not so calously)- choose which child you want- your sons a raving raging loonatic who can not be trusted to keep other kids safe including your daughter who is four years older - so choose- only one can live with you, and if you wont choose the next time he hurts her we'll put her in foster care instead.
So you see, when I read the article in Parents 2000 I had nothing to loose and everything to gain because going gfcf is expensive and nightmare - if you are fortunate enough to see the amazing results we did as quickly as we did, you will lose the shelter and protection of the 'autistic' diagnosis and when the behaviors resurface , as they will because glueten and caisen (and for Jay-corn)are everywhere, it will be instant regression until the system clenses itself again. Have you read the post I wrote- about after the first 4 days(I think-its been a while) I woke up at 9am to dead silence(instead of 5am to the ritual hoots and howls) and found him playing quietly with the legos he had forgotten how to play with almost two years previous- he was getting worse and worse each year) well when I woke I was terrified what I would find it was so quiet- I thought my god, he's done it, he's gone and killed himself- he was always at risk cause of his brilliant brain combined with the pdd lack of depth and understanding-like ya-know the can openner to get the energy out of the batteries for the remote control car cause the battery was the wrong size incident- so instead I found him with all the legos he feverently insisted could only be used once and assembled as per directions (when he learned that these things came with directions)-all of theses had been disassemble and reassembled into a "huge prisoner space escape ship- that was going through a black hole"-(pointing to a tile accross the room) "to escape the prison moon!" I was speechless-I finally said Jay look what you did, and he LOOKED at me and said "Hey I remember how to play this way!" -if only I had tried the diet years early maybe he wouldnt have so much permanent damage. Interestingly one counsellor said - he looks like a failure to thrive baby- and he was for two weeks until I put him on formula- even then until he was 2 months when the doc put him on soy- he was tiny and feather light until the diet- he grew so fast -six months later people simply didnt even recognize him. With in a week of begining the diet(which scince I new little about it in the begining the foods I fed him had low levels of glueten and caisin like rice crispies and Rice Dream- foods fastidious gfcf parents would never touch) - but he began making incredible eye contact and man he started talking and he never stopped and I got my firsts I love yous, hugs and cuddles ever with in a month of the diet! The results were so incredible that our pyschiatrist put his two adopted autisitic babies on it. He left the area so I am not sure what his long term results were, its a small area and I didnt want to invade his privacy. For Jay his verbal and nonverbal IQ s each shot up 10 points and he went from being non-testable for speech and langauge at the end of first grade to testing at age 14 when he was almost 11! How ever- and T this is where you come in- that speech and langauge test was almost harmful- because yeah- I know my son is brilliant -but his pragmatic language skills are frequently still at about age 2- that means when he has to process thing emotionally and use the emotional lobe in his brain- instant two year old- and our ot said the nerves that process the writing reading piece of it are interwined with the nerves that process the emotional piece and sometimes auditory processing and what we know about Jay is that his writing/reading/emotional behavior and how fast he can process and understand speech all tested more than 3 years delayed.(Except the emotional piece- I am trained to evaluatie social/emotional behavior- for 1,2,3,4 and 5 year olds, unfortunately elementary schools dont seem to get the conenction between developmental delay in the emotional arena- which is entirely different the emotionally disturbed behaviors- it is very normal for a 1 year or two year old to respond to stress with noises- watch Dannys play- has he ever really emerged himself in dress-up clothes and make believe daddy mommy stuff with several children- that is an emerging skill at age 3 1/2, 4 and refined and advaced by 5- Jay did it with my niece when he was 10!(thank god she had similar delays - they spent an entire summer dressing up this that and the other way) -if you contact a good local preschool or head start they should have an evaluation tool like a cor or something to tell you what the developmental mile stones of emotional social play are- look at the age where danny fits in, than start looking at his behaviors- and really look for the pupose of the communication- ie Jay take a shower, get dress ect- cause a rucous like you cant immagine with out the ritilin! There is so much thinking and cognitive coordination involved in choosing clothes, remember what's behind closed drawers. The school simply refused to acknowledge that Jay had an eye tracking problem- he avoided baseball, basket ball some video games like the plague- they even tried to tell me this month- no no,he doesnt have a tracking problem, he can catch a baseball, I gave the gym teacher a look that said who do you think your B. S'in- she s taught him for three years- he just learned this year - to catch the ball comfortable- my 5 year olds could catch ball better than he could -(simply because they would!- when trying to catch it even once when he was five, six and seven even eight instantly enraged him- but it wasn't unpredictable- I just had to look at what he was doing when behaviors started to find a pattern)- so I looked at the teacher and said "Yes, and he just learned to do that this year-right? at age 12, not kindergarten?" Joy for us is seeing that he is growing and developing and catching up where he can- and now that he is not in a continual cycle of regression because hes being asked to write - they school is awed by his intellect. - Well this is long and my family is hovering for the 'puter so I will go for now. -meme
T-bone-Mama
06-29-2003, 02:36 PM
Wow, Meme, you are an amazing Mom! You are right about the dress-up play, that is a phase that Danny has never gone through. He does dress himself, but does not care what he wears. And he is also not interested in sports, although he will play catch for a short time if I suggest it. In reading up on the PDD/Autism/Asperger's disorders, I can see traits in my older son (now almost 18) and my husband as well! My husband is somewhat of a loner, prefering to work by himself and spending his free time reading, watching TV or computer-ing. He does not relate well to others, and one thing that I have always found frustrating is that he often mis-interprets what is said to him; i.e. answering a different queston than I have asked him. My older son had almost every sign of PDD-NOS and/or Asberger's as a infant and toddler - I just realized this! Yet he is now perfectly normal, ESPECIALLY socially - he has many friends of both sexes. In elementary school, he was an early and strong reader but had a lot of trouble with writing. This has always been a handicap for him, and continues to affect his school performance. For awhile, he was in the gifted class as well as being classified, being pulled out for O.T. So - I am seeing a traits with the "boys" that may be genetic.
As for Danny, the study team felt that his academic problems were solely emotional, although the way they explained did not really make sense to me. They see him as focusing so much on his own thoughts that he truly does not focus in on what is being taught; and he also gets frustrated when he is "forced" to tune in, as this intrudes on his thoughts. Does this make sense? To me, there is still a piece of the puzzle missing - and I wonder if it could be an eye-tracking problem. Could this account for his labored and awkward writing style and letter reversals, as well as his great reluctance to read? Meme, what is the best way of finding out if he has this problem? An Opthamoligist? Where do I begin? Please help - I really think this is leading somewhere!
As for Danny, the study team felt that his academic problems were solely emotional, although the way they explained did not really make sense to me. They see him as focusing so much on his own thoughts that he truly does not focus in on what is being taught; and he also gets frustrated when he is "forced" to tune in, as this intrudes on his thoughts. Does this make sense? To me, there is still a piece of the puzzle missing - and I wonder if it could be an eye-tracking problem. Could this account for his labored and awkward writing style and letter reversals, as well as his great reluctance to read? Meme, what is the best way of finding out if he has this problem? An Opthamoligist? Where do I begin? Please help - I really think this is leading somewhere!
memehegan
06-30-2003, 01:27 AM
Hello T, I dont know what kinda of eye doc it was, I just told the receptionist what his diagnosis was and that I would like who ever they thought had any experience in that field- the bizarre thing is I said exactly the same thing the last time and they gave me a different doc- even though this doc was here then as well, ah well, cant cry over spilled milk but I would love to be a granny in my old age advocating for some changes- #1 warn pregnant moms stay away from insecticides at all costs, #2insist on mercury free shots, #3 insist on mercury free tooth fillings #4 trusts your instincts and listen to what your child says #4 before being allowed to label a child E.D. a school should be required to do a comprehesive developmental test to rule out "developmental delay" in the emotional/social relm- it looks very different from ED- I even have a few preschoolers that I suspect will be labeled ED down the road (I have never been wrong yet) and even as preschoolers the behaviors are different- they are often almost "premeditated, calculated to hurt another child or themselves, or distructive or disturbing play with toys, repetive play acting with fire or sex" developmental delays look like - I'm still two- whats yours is mine, whats mine is mine and if it looks like mine its mine and me first memememememememe.- also sensory issues loud voice, hard handed palm hitting on anything, heal stomping, rocking darting dashing hooting howling- hypersensitive to touch or unable to feel pain- Jay has a list of those- banging his head into pool wall cause new kids he never met before paid him attention and laughed- wound up with a concussion- suddenly started seeing lightening again and again when there was none- rushed him to er- the doc took one look at long list of meds and diagnosis and was ready to say well its no surprise he's begun to hallucinate- ya know we still had the ED label and just to be thorough he said ,well you didnt bang your head did you son, and to my surprise he said, yeah a whole bunch of times , it made my new friends laugh. ARRRRRRRRGH! Last summer he suffered 2nd degree burns stiring ashes in the fire into his sandles and didnt know until he had walked a good three feet away-to this day he argues that one little spark from the edge of his stick caused 2nd degree burns under his sandals on both feet (he was looking at the spark when he finally felt the pain)- keep in mind I was right there with him and immediately stopped the spontaneous ash stirring , its not like he was unsupervised in either of these situations.-he also has litttle to no bladder control on some days- especially if hes accidently ingested corn, sometimes doesnt even know his pants are wet. And last but not least I will campaign till the day I die with every spare moment for restraint of ED children and special ed children to be strickly monitored and reported to school boards and parents and the state and federal govenment and everytime it becomes necessary to restrain a written report should be completed with staff and parent when available to identify what may have caused it, not just what staff think - hes lazy doesnt want to write so he tempertantrumed -wont wash -what can we do different next time- the way the law stands now- schools dont have to do this until your child is suspended 10 days- its not even based on restraint frequency at all, and if staff are required to report even restraint hugs to school boards and they to the states then the states and government can investigate when it appears to be used excessively as in the case of my son- there are strict federal laws governing restraint of mentally challenged individuals with low IQs- but none for our children unless they have the fulfledged autism diagnosis- PDD doesnt protect them. Until this is done I beg parents ot discuss restriant discipline with the staff of their children and in writing insist that should even so much as a hug restraint be used that you expect a written report as well and an accounting on his/her report card of how many restraints per quarter. Even when my sons elbow was sprained and I took him to the doctors repeatedly with excesssive brusing from head to toe and a whelt on his forhead from head banging while in a three person face down restraint- (of which on previous accounts Jay has reported being terrified that he could not breath and thought he was going to die) even then when I tried to hot line the teaching staff I was told that the ingorance of not following his IEP to manage behaviors reslulting in the need for restraint does not meet the criteria of malicous intent and can not be hotlined. -- T you might try to find someone who can do a pragmatic speech eval- Jay was too old by time I learned what pragmatic meant- and by the way he is also an advanced artist - has nothing to do with the inability to combine letters swiftly to create words and send that signal through the hand! Also an auditiory eval- done at a major hospital - covered by the SSI medicaid he has showed in writing the first proof of his delay at age eight he still understood speach at the speed of a 4 to five year old. aproximately half his age- moore later-meme
r and r mom
06-30-2003, 11:35 AM
T-Bone-Mama- My son is seeing what is called a behavior opthamalogist because of his tracking,writing difficulties. When you bring an object close to your nose, you see double right? Well my son just "shuts off" his right eye. He also has trouble with going from near to far and back again. Anyway he is getting glasses today to address some of those issues(he has perfect vision) and also testing for some other difficulties. The clinic also has eye behavior thereapy. So you might look around for a behavior opthalmalogist clinic. We live in a rural area and the doctor is in a even smaller town so they are out there. I am not sure what we will do with the information---just one more thing to worry about.
Also, my son has been dx with sensory integration dysfunction which is a component of his HATING to write, draw, or color. Which is a bummer for a 1st grader. Almost all of his "disruptive" behavoirs centered around class time for writing/coloring or art since preschool. His school addresses his SID with an OT.
Good Luck
[This message has been edited by r and r mom (edited 06-30-2003).]
Also, my son has been dx with sensory integration dysfunction which is a component of his HATING to write, draw, or color. Which is a bummer for a 1st grader. Almost all of his "disruptive" behavoirs centered around class time for writing/coloring or art since preschool. His school addresses his SID with an OT.
Good Luck
[This message has been edited by r and r mom (edited 06-30-2003).]
T-bone-Mama
07-01-2003, 12:23 AM
Thanks again for all the help. I honestly do not know what I would do without this board! I believe it is very likely my son will show problems with eye tracking, and also a delay in pragmatic speech and emotional/social maturity. As far as what the school and study team will do with the information has yet to be seen, but I am not going to stand back and let them label him as E.D. or say that his difficulties with reading and writing are solely due to an emotional problem. I feel certain that it is the other way around - his frustration with not being able to do what seems to come so easily to every one else is causing him emotional problems! I would have been at a dead end if it weren't for all your replys. Please continue to share your stories, and I will post updates on Danny, hoping I can help someone else's child.
memehegan
07-01-2003, 09:18 PM
T as I re-read these posts, when they hire a teacher, you can ask how often has this teacher needed to have children in her class restrained last year- I have had two different teachers tell me honestly they dont beleive in restraint and only one child was ever restrained- and that was just once- that teacher is the teacher who completed an entire year without restraining Jay. Also ask- to see the planning area (where children are restrained or calmed down) tell make them write down the things that you do with Danny to calm him down when hes fustrated at home- ask exactly what behaviors would need restraint-or discipline, ask what are the consequences of not completing written work, ask that your son only be given a limited amount of time or number of words or sentences- Jay's OT actually told them no words bigger that 4-5 letters, and no more that 5 short sentences would be appropriate for writing before he moves on, It was very helpful for me to say that what ever writing Jay would or could not complete in school they should send home rather than take away his recess time. It also allowed me to see when the work was way beyond what he was capable and address it with the teacher before he was disciplined for her inappropriate expectations. Also make sure that a majority of his eduacation is offered at his intellectual level orally- for several years Jay was given 1st grade level because thats what he read and wrote- the only reason he advanced during that time is because I taught him at home orally and spent atleast 2 hours reading every evening- he was a bottomless pit for learning orally. And if you can convince the school ask for an overview of what they hope Danny to learn in each subject-what is the year end goals for science- social studies math and try to get a set of books to keep at home, so schools are great about this others are not. good luck -meme
T-bone-Mama
07-02-2003, 01:48 AM
Well, I have decided for Danny to stay at the school he's at and go into a regular 3rd grade class with a 1/2 hour pullout for resource room. As far as I know, reg. classroom teachers don't use restraints or at least I never heard of a child needing to be restrained. When Danny gets frustrated it's in an angry way, and he tends to sit at his desk and have a mini-tantrum mostly with sound effects. I don't think restraint has ever been considered since he does not lash out at people or things. I am also starting to doubt the PDD-NOS diagnosis, he does have a few of the traits but he was evaluated + diagnosed while coming off 2 months of Strattera, which he had a very bad reaction to. (I just posted about this on the ADHD board). If he does turn out to have a significant delay in pragmatic lanquage, is this enough to label him PDD-NOS? I always thought his immaturity and idiosyncrosies were because of the ADHD as well as his individual personality.
memehegan
07-02-2003, 09:33 AM
Hi, just sitting at his desk and making noises was considered enough to "remove" him to the planning room, during two different school years , he went begrugingly the first couple of times each year but also they sent him to the planning room when he refused to work that was so far above his writting abilities I cant even tell you- after doing this passively for three weeks daily with me calling the teacher daily demanding she talk to the ot- and follow the updated IEP-(which she hadnt recieved from school board yet) Jay finally exploded- and was then suspended for a week. That's how the idea of sending work home was born- then she didnt feel like he was "getting away with something" and I monitored the work and did any writing for him that I knew he couldnt do. Now his 1-1 scribes all but about 10 simple sentences a day for him than he corrects the grammer. The day of 9/11 the teacher tried to have him -the whole class- copy portions of the declaration of independance into 1" x2" boxes- he couldnt even fit one word in a box like that- inaddittion that the cross tracking involved in copying from the board freaked his eyes out- I was furious and I tell you that was absolutely the last time he was ever asked to copy from the board. Not to mention the emotional effect 9/11 had on all kids- yet I was called out of work to pick him up becaused he was rolling around on the floor hooting and howling and rythmically kicking the wall and an temporary wall divider- I also had the state make them remove the temporary structure- when Jay O'Ded on the paxil it took three huge fireman to carry him out of the house - he had supper human strength - so I am alway looking for dangerous things like that even though he doesnt do anthing like that scince being released from the hospital and then going on the gfcf diet. Another year they had those metal cabinets that you can buy for garages at department stores -all the way to the ceiling- I said my first day I visited that he would climb it (and to get rid of it but they didnt-I know at the preschool level everything has to be mounted and it should be that way in special ed rooms!)and he did and it wasnt mounted and he scared the begeepers out of them before they got rid of it. He also scaled the gym wall at his old school before the diet as well as our outter 2nd floor porch railing( the doc were trying concerta instead of ritilin, we went right back to ritilin!)- teachers should really listen to parents more! Autisitic kids and pdd kids are infamous for climbing! -meme
sjw
07-09-2003, 05:40 PM
My 7 year old son was diagnosed with PDD and ADHD a little over a year ago. He was placed in a special education school. He had a lot of issues as far as learning, and speech. It's not that he couldn't learn, but simply had no desire to. Within the last year, he has made some amazing strides. Before school started last year, I wanted him put into a public school, because I knew he did not belong in special education. He learns quickly, and picks up on things so fast. His only problem now is the aggression. Between the two schools, they decided that it would be best for my son to stay in special education. I still did not agree, but left him there. A couple of months into the school year, the school decided that he was too smart, and too "high functioning" to be in a special ed school. He was way ahead of anyone in his classroom. Now, they've come to the conclusion, following an IEP, that he, by no means qualifies nor belongs in special ed. So now they are main streaming him into the public school setting, but in kindergarten. The school told me that I could have him tested later on down the road to see what actual grade he should be placed into. I am worried that he is going to feel left behind now. Especially since he prefers to be around older children, and adults. He is the oldest of my four children, and really does not even to attempt to play with them. He very much is a one on one type of person. He does not like to be around a lot of people. He tends to go into "rages" when he is uncomfortable in certain situations. But he loves school, and the education setting. He prefers to be there than anywhere else. I have no concerns about him being in a "regular" school. I actually believe my son will learn better around normal, everday kids. But that's not to say that I believe all kids would. You have to base your decision based on the abilities of your child. If your gut tells you they would thrive better in a normal school setting, then you should do so. If you believe that your child might learn better with special education, then that's what you should do. Only you can make that decision. A school, doctor, or anyone else doesn't know your child as well as what you do. And only you know what your child is capable of.
duckie_71
08-09-2003, 08:19 PM
WOW
I am so happy to read I am not the only parent out there with such problems. I understand how each of you feel. My husband and I are fighting round and round with our schools. My son is in gen ed but goes to as they call the EH room. His first year we knew he would have problems going from a specail ed school with a 8-1-1 to a regular room 23 students and 1 techer. Not even a aide. We fought to get a aid for our son that year. He has his ups and downs. He has now finished 2nd grade getting ready for 3rd and they want to put him back in the special ed school not in the reg ed school that does have a special ed class. They say he is out of control. I am very grateful we had a inside spy who reported things to us. She said they have not done everything for him in LRE. we are now hit with a due process hearing from the special ed school trying to force him back there. I have his doc who does not think that this is the best enviorment for him plus our inside spy who has been our sons speech teacher for the last 3 years telling us that move is not the right choice . The special ed teacher is a LD teacher and we know she has not had any traing with autistic children. She treats the autistic kids like she does the kids with behavior problems. Yes my son shows anger issues at times but he also has picked up on alot of the behaviors that came from that room. Why is it that they treat parents with children like ours so harsh. Like we do not know a thing and that we are to take there word as if it was the bible. I am sick and tored of being treated like I do not know my child and they know him better.
I wish the best of luck to all of you who also going thru some tough times.
God Bless
Dawn
I am so happy to read I am not the only parent out there with such problems. I understand how each of you feel. My husband and I are fighting round and round with our schools. My son is in gen ed but goes to as they call the EH room. His first year we knew he would have problems going from a specail ed school with a 8-1-1 to a regular room 23 students and 1 techer. Not even a aide. We fought to get a aid for our son that year. He has his ups and downs. He has now finished 2nd grade getting ready for 3rd and they want to put him back in the special ed school not in the reg ed school that does have a special ed class. They say he is out of control. I am very grateful we had a inside spy who reported things to us. She said they have not done everything for him in LRE. we are now hit with a due process hearing from the special ed school trying to force him back there. I have his doc who does not think that this is the best enviorment for him plus our inside spy who has been our sons speech teacher for the last 3 years telling us that move is not the right choice . The special ed teacher is a LD teacher and we know she has not had any traing with autistic children. She treats the autistic kids like she does the kids with behavior problems. Yes my son shows anger issues at times but he also has picked up on alot of the behaviors that came from that room. Why is it that they treat parents with children like ours so harsh. Like we do not know a thing and that we are to take there word as if it was the bible. I am sick and tored of being treated like I do not know my child and they know him better.
I wish the best of luck to all of you who also going thru some tough times.
God Bless
Dawn
memehegan
08-11-2003, 02:10 PM
All my sons anger issues are a direct result of his autistic communication issues- fustrated with work and unable to communicate securely what the problem is, too too frequently misunderstood by adults unfamiliar with autism as defiance. I remember one incident so clearly- the staff wanted the children to do a community teamwork activity - so they got them all to agree to tie their ankles together and walk as one- well not shockingly my son wanted no part of touching anyone elses ankles much less being tied to them so they told my he refused to do this activity because he was seeking attention!! It is simply a raging sign of thier ignorance that landed him in the planning room being restrained- because he had to act out to communicate how much he didnt want to do it- they felt because he has a vocabulary advanced for his age that he had no communication issues- which is simply not true- because he can not access that communication to solve problems- especially back then- now he frequently baby talks- but developmentally that comes after- tempertantrums and before verbally problem solving and I will take what ever growth I can get!-meme