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Old 06-22-2002, 05:32 PM   #61
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memehegan HB User
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Hi Sarmor
I cant believe your going through all that! Jay is in special ed and I demanded a "funtional behavioral assessment" and I told the school that I would insisit that it be completed by a professional with experience writing functional behavioral assessments for children diaginosised PDD/Nos. boy that sent them in a tizzy! Fortunately I had been to a couple of BOCES TEACH trainings - Teaching & EDucating Austistic Children. I requested the person doing thoses trainings. She has set Jays school strainght and works hand in hand with the teacher - she has even had music therapy implimented and makes sure their are no distractions when Jay is keyboarding and she inisited that Jay be given a technilogical assisitive eval to make it legally binding that Jay be allowed to type all his work. They tortured him for five years making him write and saying he has to learn to write, he can do it he just wont! Well when he tested below kindergarten level after 5 years I was furious with them- I said youve had 5 years to teach him- if he had no hands you wouldnt be forcing him to write! I knew it was his hands and the brain processing involved in writing because when I gave him words on cards he could quickly alphabetize them but he couldnt write the alphabet and still cant. But it wasnt until the behavoior specialist trained in autism /pdd came into the picture that he was taught to type. He now gets 100's on 20 word age level spelling tests and hardly studies for them . Hes a natural. I am so angry with the school district I have told them from kindergarten on that I was sure that there was something wrong with his hand writing. I am still struggling. They just discontinued his occupational thereapy illegally and with out doing any testing to confirm that he had progressed frombelow kindergarten to 5th grade level! They said well hes less resistive with the music therapy so its ok now. YOu should look for a special ed resource representative to help you know what your legal rights are. In our state the school should have done the functional behavior assessement long before he was ever expelled. If discipline is inhibiting his learning- like what theyre doing to your son. I believe it is a federal law and that your school should be doing it and arent. They key is to ask for it in writing and insisit that your son has a RIGHT to have done by a professional expereienced with PDD/NOS and dont let them tell you they dont have some one cant find some one , dont know what your talking about. there are legal aide lawyers who will help you. sometimes just bluffing and saying a lawyer has just accepted your case and will be attending the next cse meeting if you are not satisfied helps also shareing frequently that you feel your sons legal rights are being violated. -good luck Mary (remember be a mama bear with them - this is your baby and you and they get one chance to get it right- these are the most important formative years for PDD/nos kids! )

 
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Old 06-24-2002, 03:20 AM   #62
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Cindy_Holden HB User
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Quote:
Originally posted by memehegan:
Dear Susana and Rachel,

thank you so much for your kind words. We really are doing wonderfully. I think all of the pieces together make it work for Jay. It was so hard in the begining, knowing in my heart something was very wrong with Jay and having no clue in the begining what or how serious. It makes a family vulnerable. Scince before he was a year old he has been challenging. Hung himself in his crib by the collar of his sleeper, screamed, I scooped him up and though wow, that was close but I am sure it scared him so much he won't do it again and I will have to do something about sleeping arrangements soon, placed him back in crib, stood outside doorway and listened as he did it again! Took crib down, put mattress on floor, put up baby gate, he pulled draws of 5 drawer dresser out and climbed up to top!, took dresser out, climbed over baby gate, put 2 baby gates up and dragged my mattress in and just slept there cause he was eyeing the closed and locked first floor window. Just wasn't takin' any chances. He was still waking every 2-3 hours and continued to do so until he was 3!
I remember even at birth, he never made eye contact, looked and focused at windows, ceiling fan, cornors, everything but peoples faces. I thought then I wonder if this is what ADHD looks like in an infant and of coarse was POO-POO by my pediatrician. My heart goes out especially to parents of high functioning autistic spectrum children in remote areas, because counsellors, school officals, everyone was as you said old school and did everything in their power to discourage me from seeking diagnosis. My first clue that it could be more than severe ADHD was when he was four, a special ed teacher gave me a flyer or aproximately 20 picto-grams of autisitic behaviors from the autism society and he did more than half of them. But the mainstream workers, from teachers, school counsellors to social workers are just so sure, when you have a little einstein who can tell you at age 4 why sugar burns and salt doesn't or why it lightnings and cosmic concepts often beyond my perception they are just so sure that he can't possibly be so verbal and be autistic, noone ever notices that "the little tazmanian devil" scene that plays out repeatedly all day long is infact the form of communication he had for years to meet all physical and emotional needs, I'm hungry, need help putting my shoes on, scared you'll loose me at the mall, afraid of the dark, wanna play outside and especially I can't write- all of them had one form of communication --- tazmanian devil bouncing off the wall. He was stuck at the age two emotionally, complete with terrible two tempertantrums and sucking his shirt in leiu of the pacifier he gave up at age 5 !/2 - until he began the glueten free/caisen free, corn free, peanut, chocolate, sodium nitrate, table salt and hydrogenated oil free diet! Developmentally he could only process stress and and expectations at that 2 year old level. He was no where near ready for kindergarten much less first grade, but it was like a light switch, on and off, intellectually, cognitively he has been several years ahead of himself, so if you could engage that part of the brain (not developmentally delayed) he became a calm focused little einstein, if you asked him how do you feel or made him mad, fustrated or scared or hungry, he was an instant two year old with no bladder control! I discovered that usually legos or reading to him instantly calmed him down (last year he designed the crank shaft of my car with legos!), but it took three years, an advocate and threat of bringing in the lawyer who accepted our case to get the school district to use reading as a de-escalating technique! I also have yet to sucessfully get the school district to give him a set of grade level books to keep at home. Its and unbelievable song and dance. I realized by the time he began second grade that he had a severe reading delay that was inhibiting his cognitive development and began reading to him hours every night- work at or beyond his age level, he was like a dry sponge soaking it all up! Before the diet- he used to share with me tons of cosmic awesome intellectual concepts, I started writing down what he said so teachers could begin to understand how brilliant he was, but after I shared just one concept with teachers in his journal- he said if you ever write down what I say again I will never talk to you again, and knowing enough about autism to be scared, I didn't chance it. Now on the diet, he cant stop talking and types book reports and stuff, but has trouble organizing his thought in sequence. Kind of a pretty normal age level thing- I think. Anyway, it was often implied by officals that I worked with to meet jays needs that I was obsesive, nerotic, phibic mother who was try to lay this fantasy disorder on a child (thank god I had the most incredible best friend who keep saying, no hun, your not crazy this isn't normal development), and many years later, as my son blossoms into a fairly normal, healthy adolescents with a great deal of work and dedication on my part, I just keep writing and sharing our story because I believe their are hundred, or thousands or heaven forbid even more than I can imagine, high functioning autistic spectrum children with leaky guts misdiagnosis and reliving our nightmare. If I can reach out and help support any family going through this, I will. It sounds like we all feel that way as I read your posts too.
hey, I can relate!!! My name is cindy, and your letter takes me back to my 10 month old that crawled out of his crib never to return again..who touches the stove 5 times to see if hot really does burn..and to a two year old who could spell his name on his second birthday H-O-L-D-E-N..T is for tree..L is for Lynne..
asperger's syndrome..Newsflash the public schoolsystems stink! HOMESCHOOL {all you need is a highschool diploma}the kids won't miss anything for the first few years..except being called names, pushed,hit, and of cource the feeling of BEING A FAILURE. I live in PA. The amish and the mennonites all homeschool their kids..it works. I am interested in info about leaky gut. My 4 year old is high function, a savant, he hasen't gained a pound in two years he was at 38 pounds from 3 till now,5 in two weeks...his pediatrition said it was normal I now have a new doctor, but none seems concerned..this guy wants to give him concerta, and risperdal GET THIS one is a stimulant, one is a tranquilizer..call ME crazy, but didn't that KILL ELVIS???? what do you think? neither med is approved for 4 year olds..I want to open his mind, not numb it.{he is a savant..I hope we don't lose that} .ANOTHER THING I hear autisim is a seretonin thing..not enough of it,right??well risperdal INHIBITS SERETONIN PRODUCTION..can't be good.. I am fearful .so many people have their kids on SO many drugs..are they informed? My son's psychiatrist didn't know about mercury and autism..my God I heard AUTISM and in two days knew about it..He didn't know about vaccines and mercury either.. he said leave the medicines up to me..and frankly, I think I'd rather not. any thoughts? This is where we are at.. on our own.. thank God for the internet...Cindy Holden

 
Old 06-24-2002, 07:40 PM   #63
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memehegan HB User
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Hi Cindy! Jay takes ritilin and risperdal and serzone and zrytec or cimetidine and a digestive enzyme. WE do the risperdal 3 x a day instead of once or twice- that way it is smaller doses- .5 mg I think. They (our sons sound so similar) The risperdal slows down the impulsive inappropriate aggressive response to situations. My nephew also takes it. If you aren't dealing with severe aggression I would comfortably say no way! Did they share that it causes infertility in lab rats? Jay was also sexually abused when he was almost two and he has an intense fight/flight response to pain/fear/fustration that would leave him institutionalized without the risperdal.-meme

 
Old 06-25-2002, 01:15 PM   #64
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Sarmor HB User
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Thanks to Memehegan for your response. You have given me the push I needed to demand more for my son. I really am tired of being ignored, but more importantly, my son is heading into puberty and I believe we will be running into major difficulties if he doesn't get the right help and understanding. Thanks again - it is nice to be reminded that we are not the only ones going through this stuff. Why does it always seem like such a battle?

 
Old 06-25-2002, 05:38 PM   #65
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memehegan HB User
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Hi guys!

we just had another cse meeting today. Jays one to one said she is doing the lions share of writing for Jay as a 'scribe' even though she not supposed to just to help him stay caught up. I said years ago and repeatedly to school officials they were inhibiting his the educational process by focusing on the writing piece- today the one to one and the OT specialist said- loud and clear "any requests to do written assignments/work seems to cause an instant block/wall in Jay and any learning value the writing assinment may have had is lost- I asked when do we say enough is enough and give Jay a scribe, stop expecting him to write or read the grade level work because he A's work auditorily. The OT said we are almost there. Yet CSE says that legally he still must write and read all state tests. How is that fair? He's brilliant with an IQ and verbal skills of a 13 year old in an 11 year old body (and he was tested at age 11!) He tests well with multiple choice. 'They didnt even say that he could type his answers. Obviously I need to contact the legal aid and special ed rep about this to understand the laws. -Mary

 
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