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.
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!
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.
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!!
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.
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).]
I'd like to know how do you keep Jed on the gf/cf diet;Do you have other children?, is the rest of the family eating the same?if not, does he ask for what others are eating? can you only get the gf/cf products via internet?
It is not easy. Not only is he on the gf/cf diet he has all the allergies. I try and make things that we all can eat especially at dinner. For him I go to the health food stores and get snacks that he likes (ie. pretzels, crackers, almond milk, bread, donuts and other stuff). This stuff is very expensive. Pretzels alone are $1.79 a bag for just a very small bag.
I just tell Jed that he cannot have other things because they will make him sick and pretty much he accepts that now. I'm not saying it's easy but you just have to set your mind to it and do it.
A few minutes ago, I received a message from healthboards saying I was banned from posting. I'm not sure if I should not of posted those websites. So if you quit hearing from me this is the reason. I hope not I enjoy talking to you all.
Thanks for sharing your stories with us. We can learn from each other experiences. It sounds like your son has similar health issues as my son. Did you cure the leaky gut? Doe's he have allergies? I noticed you took him off corn and other products. What type test have you ran on him? (hair analysis, blood, urine) I know questions, questions and more questions. I have ran all of the above tests. Just curious of your experiences vs. mine.
No, I started the diet before the allergy testing. They did the skin ***** testing on him. They also did the candida test and a comprehensive metabolic panel. The skin ***** is where they ***** the skin several times in different spots and put a drop of allergy extract (ie. milk, potatoes, wheat and so on). They wait about 15 minutes and return to observe the skin to see if there is a raised bump (kind of like a mosquito bite). If it has raised this means there is a allergic reaction. They rate it depending on how big the raised spot is. The bigger the spot the more severe allegic reaction. Are you thinking about having him tested?
I have also had hair analysis done on him twice to detect mercury. There was no mercury detected but other toxic metals were detected. Such as aluminum & arsenic. I had a organic acid test done by Great Plain Labs. This test-tests for yeast, amino acids, fatty acids, bacteria and others. I also had a urinary peptide test done to see if he was able to digest gluten and casein properly. This test came back normal and was pretty expensive.
Rachel
[This message has been edited by RachelK (edited 04-13-2002).]
Hi, no testing, its just his results were so incredible our pediatrician and psychiatrist both supported the diet after they saw the incredible results-begining with speach and eye contact! I mean geez his verbal and nonverbal IQ even went up 10 points thats very unusual! I think it was always high, its just he was so autistic he refused to communicate with anyone but me. I learned about the diet in parents magazine while he was home tutored (back after paxil when school refused to allow him to return and was looking for resdiential placement) like the mom in the article, I had nothing to loose and every thing to gain, it was exactly two years ago! He used to wake the whole the household up at the crack of dawn daily hoot'n, howl, chirp'n bouncing- our little tigger- on day three of diet, I woke at 9 am to dead silence I was terrified that he done another bizzare chemical experiment (like when he tried to get the energy out of batteries with a can opener caught that one before he started) only I thought god, he's killed himself as I dashed out of living room I found him quietly disassembling legos he had rigidly been banishing to shelves after assembling them once as per instructions that each came with- he'd refused to make them any other way once he discovered legos came with instructions- for the last year and a half- That day he had them delightfully scattered accross the living room floor and was building of all things and escaped prision ship it was 3 feet long with about 20 guys lined up on it and he said they were going thruough a timewarp space continu-um thing to a safe moon over there ! I just said Jay look what you did! He said Hey I rememeber how to play this way! He felt so good it was months before he was really tempted to cheat on the diet! - on weekends I would narrow his foods down to just rice and then introduce something with sodium nitrate or corn and oh my goodness it was dejavu' it didnt take long at all to figure out what foods had to go- and the behaviors were a very strong negative reienforcer for me to follow the diet- even something as simple as hydrogenated oils and boom hes off- any corn products which by the way is often an unlisted non-caking ingredient in salt and he losses incontinance. Now even the teachers and ot all say the difference is incredible! The last diet infraction he had he wripped is bedroom door off- oops.Well gotta go more latter! When I first started the foods we began that weekend with I found out latter weren't even completely GF/CF- it was rice dream milk and rice crispies! After a while even little infractions were noticable but in the begining is was a great transitional food. -Mary
It's kind of hard at first. Gluten and casein is hidden under alot of different names. How is your bill at the health food stores? Mine is huge! Just went there today and spent $70.00 on just a few snack stuff.
It's great that your son has you for a mother. Keep up the good work.
Hi, my bill is pretty high too, I also purchase allzyme digestive enzyme there as well, he takes that with each med dose because the meds contain traces of milk. the enzyme is like $23 and last almost a month. I also found a soy cyber chip in apple, garlic and plain that is half and half rice/soy chip. They're so good, my daughter begs me to buy them for her too. He snacks on pistachios at lunch and tolerates them and walnuts as well, peanuts are legumes and they are nuts so they're a differant family! Yeah! Any way, they deliver UPS right to your door for $14 a case (of 12!) Now I got our local walmart to carry them and they charge the same amount if I break it down. Pretty cool Jay lost 15# in the last 6 month snackin on them which was ok by me, each bag has 14 grms of protien and only 3 grms of fat! The risperedal used to make him raving hungry and he would binge and binge. I am just so pleased that hes been able to wear boys size fourteens all school year. He used to be slims right up until the tenex or clonidine I can't remember. Then they pulled him off and slimmed right back down to slims, and then they started the risperdial and he gained an easy 20 pounds for the first time in his life. He would eat 4 hamburges than whine and yell and demand more food even thoough he couldn't posssible be hungry. I finally stopped the last dose of risperidal because the hunger kept him a wake longer than the sedative effect the risperdal should have had. Now he only takes it with the ritilin so they balance each other out. He also started the diet several months after the risperidal and then he started growing, and lost alot of the sensory stimulation behaviors- one of the high lights of my life this year when he repeatedly told me he was certain he had a kidney infection again and again (something like my kidney has diareah) , the doctor checked it out and he was fine, eventually what I discovered was that the first time he had actually felt inner sensation/pain/cramping was with dirareah, and then a bladder infection a year ago- he mixes up kidney/bladder - and...... drum roll his bladder nerves had finally developed and could tell him his bladder was full! Really full! Yeah! He didn't get even a patch of frostbite this year and no nasty feet infections, all of his limbs appear to have almost normal sensation now! I think he may have been starving/malnurished before the diet because like most he had limited his diet to milk/wheat products and wasn't able to process the protiens. Also an interesting thing our new counsellor shared and I wonder if any of you had this experience - at birth he was technically failure to thrive for almost two weeks, I was allowed to take him home in five days after the jaundice as long as I drove 15 miles daily to have him weighed but he simply refused to breast feed or grow. Finally I was exhausted I fed him 24/7 left-right-left-right and he just wouldn't suck. (also I had sucessfully breast feed my first!) I gave in and purchased formula on a saturday-at the end of the second week. The doctors office was closed on weekends, the nurse read me the riot act on monday saying I could not bottle feed until he started gaining and I said I already had! She scowled and weighed him and for the first time scince the jaundice subsided he had gained almost a pound! Yeah! So she stopped scowling, with in a month the ped switched him to soy because he had exzema behind his ears. Also all over his face! Yuk.. Ok back to now and the new counsellor, she said that failure to thrive babies often look like jay, I have never heard that - or ever really considered him a failure to thrive baby-I thought that was more from alcohol or drugs ,I did neather, and he gained steadly after those two weeks, and although he didnt cuddle he seemed comfortable and content, thank god that because he woke every two hours and I tried so hard to breast feed those first two weeks I just slipped into the habit of sleeping with him on my chest all night for several months (single mom can do! smile) The counsellor said that may be the single prevailing factor that helped him develop as well as he has! Attachment disorder is frequently diagnosied in failure to thrive babies, it had crossed my mind when he was doing the paxil and I didnt understand the side effects of paxil, but other than that, scince the diet he is so a mama's boy, he has just finally developed to the point where he will play for an hour with legos alone now, before the diet he played for hours hours and hours alone. With the paxil he was just aggressive and destructive and angry angry angry! I used to lay with him for 2 hours at bedtime reading and talking and its killing me but I know as he develops emotionally at the speed of sound he is ready to learn more independence which is why I can write such long posts evey night. He can see me from his room and yet quietly amuzes himself with gameboy or the max steel guys for an hour to calm down and get into the rest mode. I so miss that time with him though, and working 40 hours a week doest leave alot of other spare time after chores- I still cuddle and talk but its more like 10-15 minutes. Or sometimes we watch a show, I am so a survivor fan, we cuddle on the couch together. I have stopped reading because he can read himself but he won't if he knows I will! Its got to be consistent, he still has his rigid quirks, its either all or nothing for him. Ok, well hes on his last scavenger hunt in the kitchen so I am for the abbreviated cuddle! -Mary
ok, well that was short! He kept begggggggggginnnnnnnnn to watch acme prime time hour! I said nooooooooo,stop beggggggnnnn or I will get up. I have seen wil E Coyote and acme and acme anything is junk food for the brain. He assured me you can learn all kinds of stuff from acme- like the little chick with the rooster, some times he does chemistry! (great jsut what I need more chemistry) and he says, "what about when bugs does shakespear,thats educational! He had me there,) stuck to my gun though and got up when he contimued to whine, so far so good, silence. smile -Bye!
Have you tried the Blue Diamond Almond milk and the Blue Diamond almond Nut Thins? These products are real good. The Nut Thins taste just like Tostito chips. They also come in pecan and hazelnut. Jed loves these. He will sit and eat a whole box if I let him. Have you tried any of the Kinnikinnick products. These are really really good. They have sandwich bread, donuts, pizza dough, bagels, cinnamon rolls and other stuff. So far their stuff has been the best that I've tried. Jed seems to like them too. I'm kind of lucky..we have a health food store that carries alot of stuff for gf/cf diets because they have meetings for parents with children with autism at their store. Anyway, you asked if our kids thrived as babies. Jed did just fine. He was always a cranky baby thou. I thought I was going to die. He had 2 sets of tubes b4 the age of 2. The first set at 7 months. Even after the first set, we still continued to have problems. He received his 2nd set right at 2. He finally (knock on wood) grew out of this by age 3. I also think that if I was aware of the milk allergy that he has he would not of had as many as he did. Anyway, He is doing good. He has been on Zoloft for about 3 or 4 day with the combination of paxil until next wednesday. Then he will be on zoloft only. I think I already am seeing a change for the better. I hope so. Some of the things he was asking to do b4 paxil he is not asking to do now. Like he was asking to color and write his name and sitting with me and spelling some words. At that time he was on zoloft. He refuses to do this without a fight now. I hope this will change within the month. It usually takes about a month to get the full affect of a SSRI. Keep your fingers crossed for me.
