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Old 04-11-2002, 07:24 AM   #16
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My 6 yo son was diagnosed with High Functioning Autism and we just started him on Luvox (25mg) a couple of weeks ago to hopefully curb some of his O/C behaviors. He is in a full-day LAD kinder class and his teachers say if it wasn't for his disruptive behaviors there would be no reason not to mainstream him now. So our goal now is to find a way to allow him to keep focused and lessen his distractibility.

Since it seems some of you are in similar positions with your kids, any help/advise would be appreciated.

James

 
Old 04-11-2002, 09:10 AM   #17
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Hi James,
What helped my son to focus and pay attention was Risperdal, he took this when he was 3yo and it made a world of difference.Now (hi's 5 1/2)he is off Risperdal but he didn't loose the progress he made.

Susana.

 
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Old 04-11-2002, 09:21 AM   #18
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Rachel,
Sounds like your boy is doing great!,I bet in few years you won't be able to tell he was autistic.As far as the OCD, there is lots of different drugs you can try, so I'm sure you'll find the right one for your little boy. Is he Asperger's? sound like he is to me.
Susana.

 
Old 04-11-2002, 11:58 AM   #19
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Susana,

I'm really not sure what the correct diagnosis is. He was diagnosed thru the school with High Functioning Autism. His private psycologist first thought it was aspergers but recently changed her mind to sensory integration dysfunction and ADHD. The schools are so quick to put labels on our kids. They evaluated him and diagnosed him in about 30 minutes. His private psycologist has been seeing him for about a year (once a week)and is unable to say he is autistic. His pediatrician doe's not think he is autistic. I personally think he has sensory integration dysfunction with ADHD. Regardless, I have been treating the symptoms without really knowing what the correct diagnosis is. It seems to working and we just keep plugging away.

Rachel K.

 
Old 04-11-2002, 12:12 PM   #20
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Rachel,
It's true that the label doesn't make a difference for us, but I can see how the school needs to have name attached to everything,however,I didn't think they can diagnose your child, don't they need a neurologist and psychiatrist to do that?.
I learned from adult Autistics ,Aspergers and others is that as small childen they didn't know they were different, and when they realized they felt better when finally labled because they belonged to something , before they often felt out of place.
I wanted a diagnosis so that I could find out all about it and to find the right school placement.
Susana.

 
Old 04-11-2002, 03:58 PM   #21
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Susana,

They have a school psycologist that comes in and does the evaluation. She basically gives a diagnosis and then a recommendation on services. The only thing that bothers me is that they have to label him to receive certain services (one being extended school year). Why can't they just give him the services he needs. As far as I know, we do not have special classes for autistic kids. They are all just put in a room with others with different disabilities. I will be watching very closely this fall to see if Jed is being challenged. I'm a little concerned about that.

Rachel K

 
Old 04-11-2002, 06:32 PM   #22
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Susana,

Thanks, I will check it out.

Rachel K

 
Old 04-11-2002, 07:48 PM   #23
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Just thought I would share my two sense about the labling piece, without the PDD lable, Jay would be labled as Emotionally disturbed within the school district which would intern justisfy keeping him isolated in the self-contained behavior adjustment program who assured me for years before the diagnosis that the only reason Jay tempered tantrumed/raged/ withdrew and/or became aggressive when asked to write was that he was emotionally disturbed, he could do it, he just chose not too. Two years after diagnosis, and thirty-three restraints in one school year-some resulting in injuries-sprained elbow, huge welts on forehead from head banging, all episodes resulting due to expectations to write, other children or staff touching him, loud noises and or wide open spaces with no boundries, and they are certain that its not autism but emotional disturbances. They even argured two doctors diagnosis -one a psychiatrist that treated him inpatient those 6 weeks daily including restrains resulting from writing requests. Apparently emoionally disturbed completely negates the concept of sensory intergration issues! Anyway- finally this september his triannual revealed that he was reading and writing below a kindergarten level at age 10! Any yet has a high IQ and verbal skills (not related to meeting physcial needs or emotions) tested at age 13. Now I have researched emotional disturbances and generally these kids have increasingly dropping IQ's, never high. And finally the school psychiatrist admitted that ignoring a serious learning disability for 5 years straight could be the catalyst for behaviors that look emotionally disturbed. I believe he is missing some nerve bridge work directly related to writing. In september he could alphabetize index cards like a breeze and recognzie his site vocabulary but absolutely could not write the alphabet! Now he can type with 80-90% accuracy scince they stopped wasting his whole day by regressing him with writing requests and he's reading at a 3rd grade level! So to sum up, his diagnosis was critical for the school district to develop appropriate expectations and to protect him from outrageous expectations -and being in a self-contained classroom of emotionally disturbed kids expsoses him to kids who have some behaviors outside the norm that I wish he wern't exposed to- like kids bragging about hurting them selves or killing themselves, or gonna kill him. He sliced his palm open on a can, had a cast to keep skin together to heal, one kid told him the whole two weeks, the day he got the cast off he was gonna hurt him right on his cut and sure enough the first day in gym, he wacked him with a tennis racket. He is a kind child who doesnt hurt other kids and its been very fustrating all these years working to get him in a group of children who are emotionally healthy role models. And though many are at his emotional age level which is approximately a little more than half his chronical logical age- none of them are his intellectual equal so he is like a fish out of water when it comes to making freinds. I love summers when he can social lize with the kids at the pool from his sunday school class. He's doing so well mainstreaming the one class they allowed this year he'll be placed in a regular computor class next year and mainstreamed for regular classes with his one to one aide! Also the teacher this year recognizes his intelligence and teaches to it as opposed to providing only the level of work a kindergartener could read!

 
Old 04-12-2002, 05:06 AM   #24
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memehegan,

It breaks my hart to hear how much time they made you waste having the wrong dx and the harm they caused by placing him with the wrong group of children,those people sound like the old days when they thought that autism was caused by bad parenting (I'm not that old I read about it).
But you are on the right path now, that's great!
It's so good that he has a high IQ, (he souns very smart)now that he is going to have the right placement he's going to be so successful!
Good luck to you both!.
Susana.

 
Old 04-12-2002, 01:03 PM   #25
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Memehegan,

I'm glad you finally got the help you needed.
It's one thing to have a correct label but it's another to have one that may be incorrect. For example...Jed thru the schools was dx as high functioning autistic. This label gave him permission to attend EYS (extended school year)which is great. What is not so great is he was placed in a classroom with children who were nonverbal and who were not potty trained just to name a few. These children were all severly autistic and Jed could have no interaction at all with them. So this service really was not beneficial to him and possibly could have been negative to his progress. One thing that was good was that Jed had the same teacher he had for the regular school year and she knew what Jed was capable of and was able to work one on one with him. He also got to go to other classrooms and participate in other activities with other children because of this teacher. She is a wonderful teacher. He has her again this year and hopefully again next year. All I'm trying to say is (in my opinion only) that the schools are not always right. Your case is a great example. Look at the time that was wasted. We as parents have to be BIG advocates for our children because if we don't NO ONE ELSE WILL!!

Rachel K.

 
Old 04-12-2002, 01:24 PM   #26
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Susana,

Have you tried vitamin therapy with your child?

Rachel

 
Old 04-12-2002, 04:30 PM   #27
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Rachel,

What kind of vitamins?, I never heard of that yet.

 
Old 04-12-2002, 07:13 PM   #28
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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.

 
Old 04-13-2002, 07:24 AM   #29
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Susana,

There have been studies to show that vitamin B6 & magnesium help our children greatly. Jed has been on Super Nu Thera for approximately a year. Again, I'm not sure that this has helped him but my gut feeling it has. Super Nu Thera is a mega-vitamin with a combination of different vitamins in one. It has been specially formulated for our children and is available only thru Kirkman Laboratories in Oregon (mail order). Some of the remarkable results from using this vitamin can be increased communication skills, reduced restlessness, less irritablity, reduced repetitive self stimulation and better eye contact. There are many other products available that have given
good results in the area of speech. These are called TMG and DMG. I have not personnaly used these but I have met people who swear by it. I could go on and on about this stuff. I hired a nutritionist after doing several hair and blood tests to help since we were talking about mega doses and that scared me. One test that we had done was a candida test. This has been a problem for some of our children. As memehagen mentioned in her last post, alot of our children have leaky guts. When our intestine don't breakdown food properly intestinal dysbiosis occurs. Dybiosis is a condition in which there is a an imbalance of the normal microbial envioronment of the intestinal tract. This can result in the overgrowth of yeast/fungi (candida) bacteria and parasites that adversely affect the intestinal lining resulting in a condition referred to as intestinal permeability (leaky gut). Jed did have a moderate range of candida and was treated with nystatin and probiotics (from Kirkman labs). Another sign of leaky gut can be food allergies. Jed has Major food allergies. The good news is with the GF/CF diet and the elimination of the other foods (ie. potatoes, corn, tuna, peanuts, milk and others) we have finally gotten these under control. Really, like I said I could go on and on. Try going to this website and reading some of this for yourself. It is [url="http://www.autism.com/ari/."]www.autism.com/ari/.[/url] There should be a article there wriiten by Dr. Bernard Rimland. Another website is [url="http://www.kirkmanlabs.com."]www.kirkmanlabs.com.[/url] I think you can find some more info there.

I know after reading about vitamin therapy I was very excited and was very eager to start. This may or may not interest you but I thought I would share just in case.

Rachel K

[This message has been edited by RachelK (edited 04-13-2002).]

 
Old 04-13-2002, 08:18 AM   #30
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Thanks Rachel!,

I'll look into it right now.

 
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