OT - Autism

[Wheels Of Fyre]

I have to take a moment to applaud JOURNEY for their autism charity efforts. Including myself I know there are several other board members between here and BT that have autistic children. Life is challenging enough for "normal" children and adults. Autism adds challenges that are truly frustrating. Autism not only presents a child with major hurdles but also makes it next to impossible for anyone to help them because it affects social and interpersonal communication skills and development.

There's hope. Early intervention is most critical. We suspected our oldest son when he was about 18 months however it took until he was 4 years old before he was properly diagnosed. He's now 6 and has shown incredible progress in his special needs class. Our 2 year old was just diagnosed last week. Working closely with our pediatrician we're trying to get him into a special program ASAP.

My heart goes out to our children and all others and their parents who face the challenges of autism. JOURNEY's contributions and attention to autism help to research as well as bring attention via their celebrity to a very real and growing problem. I urge you to research this for yourselves and learn what you can - do what you can - contribute what you can be it money, time, or neighborly love.

To those of you who have children that are afflicted: Stay strong - your children can't make it without you.

[Blondie]

My cousin's son was diagnosed at age 2 and he's now 10 and in regular school due to early intervention. Very cool that Journey is doing this. Thanks for posting. Best of luck for you and your family.

[larryfromnextdoor]

i applaud you john,, ive worked with adults with autisim as a partial diagnosis.. some of the folks we worked with wanted nothing to do with people , just inatimate objects like purses and bags ect.., it made for some tough training excercises..good job to the band.

[Wheels Of Fyre]

My cousin's son was diagnosed at age 2 and he's now 10 and in regular school due to early intervention. Very cool that Journey is doing this. Thanks for posting. Best of luck for you and your family.

Thanks for the sentiment. We've got a long road ahead.

JOURNEY's involvement is absolutely cool.

Great news about your cousin's son! Every time I hear a success story - and I don't care how big or small - it gives me all the more hope.

[Wheels Of Fyre]

i applaud you john,, ive worked with adults with autisim as a partial diagnosis.. some of the folks we worked with wanted nothing to do with people , just inatimate objects like purses and bags ect.., it made for some tough training excercises..good job to the band.

Hey - the applause goes to you. You've worked with them and that's what I meant about contributing what you can. You're one of the good guys!

Not being able to connect with people is the most difficult thing. Our 2 boys tend to lock onto objects but I do what I can to "unlock" them. It isn't easy because they can go into hysterics but I've found with our boys (and it's not true with every child) that the more I push them the more they respond.

I just hope I'll have enough life left in me before it's all said and done!

[larryfromnextdoor]

i applaud you john,, ive worked with adults with autisim as a partial diagnosis.. some of the folks we worked with wanted nothing to do with people , just inatimate objects like purses and bags ect.., it made for some tough training excercises..good job to the band.

Hey - the applause goes to you. You've worked with them and that's what I meant about contributing what you can. You're one of the good guys!

Not being able to connect with people is the most difficult thing. Our 2 boys tend to lock onto objects but I do what I can to "unlock" them. It isn't easy because they can go into hysterics but I've found with our boys (and it's not true with every child) that the more I push them the more they respond.

I just hope I'll have enough life left in me before it's all said and done!

i know you know this,, but i was just amazed at how BRILLIANT folks with autisim are,, one adult lady couldnt tie her shoe, but could draw a schematic type map of the house she lived in,, im talking light switches ect , with out having to look up from the paper,, i watched a 20/20 the other day about how some folks with A. can master the piano ,, truly amazing,, i really think dustin hofman did a bang up realistic job with Rain man..

[larryfromnextdoor]

this kid is just terrific! autisim is just not holding him back !
this is one where he scores 6, 3 point baskets..

http://youtube.com/watch?v=zENySdFr7M4

[larryfromnextdoor]

An autistic man's recreation of rome
unbelievable..

http://youtube.com/watch?v=DyDpOpzD-zc

[tammy]

It is great that Journey & a lot of bands are helping...VH1 Classics t.v. station has a public service announcement about Autism playing with many famous Rock & Roll musicians.
It's a very tough road - many of you know I have an Autistic 6 yr. old girl who is non-verbal. She's been in an Autistic Kindergarten class in a public school & they love her, but we were just told that her screeching/shrieking/shrills are disrupting other students (yep, she is extremely loud)....they told us we have a year to get this behavior extinguished or she cannot be in this school anymore & would need to go back to the school she started at, which doesn't make us happy. We've tried everything - she doesn't care or she just can't help it - & the kid just loves to make these loud, annoying noises ALL THE TIME - when she is happy, mad, excited, while eating, riding the bus...she even does it during her behavioral therapy sessions...geez, if the trained teachers & therapists are at a loss? The teacher is suggesting medication of some sort - so, now we are gonna take her to the child pyschatrist...this should be interesting as hubby is dead set against medicating. Seems our daughter gets her "stimming" this way along with pounding on her chest like Tarzan....I know it is terrible for me to say this, but she drives me nuts...I don't know how other families cope with these demands...I'm so burned out.

[7 Wishes]

My five year old was diagnosed with Autistic Spectrum Disorder three and a half years ago, but his progress has been staggering...to those of you who are suffering through this as well, my whole heart goes out to you.

[larryfromnextdoor]

going to edit this...

[Wheels Of Fyre]

i know you know this,, but i was just amazed at how BRILLIANT folks with autisim are,, one adult lady couldnt tie her shoe, but could draw a schematic type map of the house she lived in,, im talking light switches ect , with out having to look up from the paper,, i watched a 20/20 the other day about how some folks with A. can master the piano ,, truly amazing,, i really think dustin hofman did a bang up realistic job with Rain man..

That lady is truly wild. It's even crazier when you consider that tying a shoe and drawing are both fine motor skills - you'd think if she could do one then she could do the other. Autism is bizarre.

Our 6 year old has very poor writing skills. It's very difficult for him to hold a crayon, etc. He also has trouble stabilizing the paper with his free hand. He's progressing but it's a real challenge.

He's pretty awesome when it comes to gross motor skills. He can shoot a kid's basketball and pitch a baseball with real precision. He can throw a football with a spiral, too. His batting and catching are also pretty good - he just can't write his name, tie his shoes, or button his shirt!

We have an electric piano that he klunks around on. I don't hear any Jon Cain in him yet but who knows?

I agree with Dustin Hoffman in Rain Man. It's so funny because our son says, "Yeah." EXACTLY like Hoffman does in the movie.

[Wheels Of Fyre]

It is great that Journey & a lot of bands are helping...VH1 Classics t.v. station has a public service announcement about Autism playing with many famous Rock & Roll musicians.
It's a very tough road - many of you know I have an Autistic 6 yr. old girl who is non-verbal. She's been in an Autistic Kindergarten class in a public school & they love her, but we were just told that her screeching/shrieking/shrills are disrupting other students (yep, she is extremely loud)....they told us we have a year to get this behavior extinguished or she cannot be in this school anymore & would need to go back to the school she started at, which doesn't make us happy. We've tried everything - she doesn't care or she just can't help it - & the kid just loves to make these loud, annoying noises ALL THE TIME - when she is happy, mad, excited, while eating, riding the bus...she even does it during her behavioral therapy sessions...geez, if the trained teachers & therapists are at a loss? The teacher is suggesting medication of some sort - so, now we are gonna take her to the child pyschatrist...this should be interesting as hubby is dead set against medicating. Seems our daughter gets her "stimming" this way along with pounding on her chest like Tarzan....I know it is terrible for me to say this, but she drives me nuts...I don't know how other families cope with these demands...I'm so burned out.

Hey, silverblue. I've followed a lot of your posts on this topic. I can empathize with the screeching. It's just what both the verbal and non-verbal kids do. Our 6 year old didn't speak until he was about 5. Prior to that it was just a couple words here and there and LOTS of screeching. You know the kind I'm talking about! Ear piercing, window cracking, SONIC shatternig stuff Steve Perry could only have ever dreamed about. Sounds that just don't seem humanly possible!

I find it frustrating that the school is being so callous.

It's funny that you mention Tarzan and chest thumping. I do this with our boys sometimes after dinner. I show them that I've cleaned my plate and then beat my chest and make triumphant gorilla sounds. They crack up and try to imitate me.

I wish I had some sound advice. I would only say that it's ok to be burned out and feel like nuts. We're only human, right? When faced with screeching what I typically do is cradle their faces in my hands and force eye contact and say clearly, "No screaming - USE YOUR WORDS." I also prompt our children with the right words if they're struggling to find them. The more simple I keep it the better. It's HARD WORK but I'm a persistent bastard. If that's what it takes, you know?

[SteveForever]

It is great that Journey & a lot of bands are helping...VH1 Classics t.v. station has a public service announcement about Autism playing with many famous Rock & Roll musicians.
It's a very tough road - many of you know I have an Autistic 6 yr. old girl who is non-verbal. She's been in an Autistic Kindergarten class in a public school & they love her, but we were just told that her screeching/shrieking/shrills are disrupting other students (yep, she is extremely loud)....they told us we have a year to get this behavior extinguished or she cannot be in this school anymore & would need to go back to the school she started at, which doesn't make us happy. We've tried everything - she doesn't care or she just can't help it - & the kid just loves to make these loud, annoying noises ALL THE TIME - when she is happy, mad, excited, while eating, riding the bus...she even does it during her behavioral therapy sessions...geez, if the trained teachers & therapists are at a loss? The teacher is suggesting medication of some sort - so, now we are gonna take her to the child pyschatrist...this should be interesting as hubby is dead set against medicating. Seems our daughter gets her "stimming" this way along with pounding on her chest like Tarzan....I know it is terrible for me to say this, but she drives me nuts...I don't know how other families cope with these demands...I'm so burned out.

I wish I lived near you, I would so help you get a break. I don't blame you for being burned out, my gosh you are only one person and to be doing what all you must have to do for her! There is going to be some kind of answer given to you on how to control her noises, hang in there. I know that probably doesn't help, but seriously someone out there must know how to contain this. God bless your heart. What in the world is causing all these children to have this affliction?!

[Wheels Of Fyre]

this kid is just terrific! autisim is just not holding him back !
this is one where he scores 6, 3 point baskets..

http://youtube.com/watch?v=zENySdFr7M4

That was worth the forever it took to download on my dinosaur dial-up connection! AMAZING!

He was hot as a pistol!

[7 Wishes]

Thimerosol. Before the government allowed its use in innoculations in 1947, AUTISM DID NOT EXIST. It was almost banned under the Carter administration, but regulation got lax again under Reagan. There was not one autistic child before 1947, and now 1 in 166 are afflicted. Thimerosol, incidentally, is a mercury derivative that helped companies like GSK to make billions in the 80's and 90's. It allows those assholes to make vaccinations in huge vats, as opposed to individual doses, which are ten times as expensive to produce. Thimerosol = big bucks for the pharma industry. They knew what it did, but conspired with the CDC to cover it up since the CDC had failed to properly regulate these companies. I've paid $40,000 in the past four years to chelate my son, and they have removed so many toxins - most notably, massive amounts of mercury - from his body it would make you sick just to hear it. These toxins don't enter the blood stream - they attack internal organs in children who have a genetic deficiency that makes them much more susceptible to these poisons. Blood tests will not detect the levels...my son's was 1,000 TIMES OVER THE "maximum" allowable units per million before chelation based on how much has been chelated from his body - now it's almost down to "normal", and he has gone from screaming, screeching, not talking, hitting, and not being potty trained to being assimilated into the "normal" school population next year.

[Wheels Of Fyre]

Thimerosol. Before the government allowed its use in innoculations in 1947, AUTISM DID NOT EXIST. It was almost banned under the Carter administration, but regulation got lax again under Reagan. There was not one autistic child before 1947, and now 1 in 166 are afflicted. Thimerosol, incidentally, is a mercury derivative that helped companies like GSK to make billions in the 80's and 90's. It allows those assholes to make vaccinations in huge vats, as opposed to individual doses, which are ten times as expensive to produce. Thimerosol = big bucks for the pharma industry. They knew what it did, but conspired with the CDC to cover it up since the CDC had failed to properly regulate these companies. I've paid $40,000 in the past four years to chelate my son, and they have removed so many toxins - most notably, massive amounts of mercury - from his body it would make you sick just to hear it. These toxins don't enter the blood stream - they attack internal organs in children who have a genetic deficiency that makes them much more susceptible to these poisons. Blood tests will not detect the levels...my son's was 1,000 TIMES OVER THE "maximum" allowable units per million before chelation based on how much has been chelated from his body - now it's almost down to "normal", and he has gone from screaming, screeching, not talking, hitting, and not being potty trained to being assimilated into the "normal" school population next year.

There's a lot of compelling arguments regarding mercury toxicity. Coincidentally I spoke with our pediatrician/bahavioral psychologist about chelation. He has 40+ years in pediatrics and told me that he's only ever had 3 families pursue chelation. Out of those 3 none of them had positive results.

I've read good/bad stories regarding chelation. Where did you go to have it done? Did your insurance cover any of it? How was the mercury level measured - through hair or fingernail samples?

Answers, please! Educate me.

The thing that turns me off from this is that mercury is EVERYWHERE. It can enter the body any number of ways. Typically, an autistic person has the inability to evacuate or release mercury from their body resulting in a toxic level building up. That said, if you go through chelation how long until the toxic levels are up again?

Did you hear abuot the chelation properties of cilantro?

[Perry86fan]

You make so proud to be a member here.I will say this there so beautiful and very special to me.We are all beautiful in our own way.

[Blondie]

My prayers go out to each and every one of you!

[Wheels Of Fyre]

My prayers go out to each and every one of you!

Thanks! Every prayer - even the slightest thought or consideration is good energy! And you know something? It all comes back around to you!

[conversationpc]

I have to take a moment to applaud JOURNEY for their autism charity efforts. Including myself I know there are several other board members between here and BT that have autistic children. Life is challenging enough for "normal" children and adults. Autism adds challenges that are truly frustrating. Autism not only presents a child with major hurdles but also makes it next to impossible for anyone to help them because it affects social and interpersonal communication skills and development.

There's hope. Early intervention is most critical. We suspected our oldest son when he was about 18 months however it took until he was 4 years old before he was properly diagnosed. He's now 6 and has shown incredible progress in his special needs class. Our 2 year old was just diagnosed last week. Working closely with our pediatrician we're trying to get him into a special program ASAP.

My heart goes out to our children and all others and their parents who face the challenges of autism. JOURNEY's contributions and attention to autism help to research as well as bring attention via their celebrity to a very real and growing problem. I urge you to research this for yourselves and learn what you can - do what you can - contribute what you can be it money, time, or neighborly love.

To those of you who have children that are afflicted: Stay strong - your children can't make it without you.

Now this is something I can actually agree with you on.

[tammy]

Because of pressure from parents - they have removed the Thimerasol from vaccinations, but, the CDC was saying that there is no connection between that & Autism. I guess, waiting to see if the numbers rise or fall of kids afflicted will tell in time. I also wonder if Autism before the 1940s was just confused with mental illness ...many Autistics have eccentric behavior & since they have no physical tell-tale features that indicate otherwise (like Down's, MR, CP) the doctors didn't even know about Autism until 1947 or so.

Our daughter has problems with both gross & fine motor skills...very clumsy & crashes all the time. We took her to a new park that is for Disabled kids & the first thing she does is run & trip up the curb & skins her elbow bad...she doesn't cry or get bothered because she is "under-reactive" she doesn't feel pain much...she crashed at school once & hit the kiddie table & had to have stitches in her forehead - she didn't react much - just hated being held down.

She only in recent months can kinda make lines with a crayon but only when told. Seems she has no interest in doing things unless she is forced & then of course, her screaming gets even louder & angrier. Yep, it is ear-shattering & the screaming at school disrupts the typical kids in other classes (it is a regular public school with an Autism program).
Anyway, she has a long way to go & has made some progress, sure, but what a typical kid picks up intuitively in a very short time, she has to be taught over & over & over....potty training has been in effect 2 yrs now & she still doesn't get it...and, will she ever indicate to us that she has a messy diaper? NO. She smears herself & the walls with it. argh! She also has a problem with sticking her finger in her nose constantly...she then has MAJOR nose bleeds & it is everywhere...she looks like an accident victim & she doesn't come to me or get scared, so instead she smears it all over herself & things! The school always calls me to pick her up when she gets nose bleeds...
day by day...

Maybe, I need this - just came across today: http://www.vermontcountrystore.com/shop ... ctID=33049

[Wheels Of Fyre]

Because of pressure from parents - they have removed the Thimerasol from vaccinations, but, the CDC was saying that there is no connection between that & Autism. I guess, waiting to see if the numbers rise or fall of kids afflicted will tell in time. I also wonder if Autism before the 1940s was just confused with mental illness ...many Autistics have eccentric behavior & since they have no physical tell-tale features that indicate otherwise (like Down's, MR, CP) the doctors didn't even know about Autism until 1947 or so.

Our daughter has problems with both gross & fine motor skills...very clumsy & crashes all the time. We took her to a new park that is for Disabled kids & the first thing she does is run & trip up the curb & skins her elbow bad...she doesn't cry or get bothered because she is "under-reactive" she doesn't feel pain much...she crashed at school once & hit the kiddie table & had to have stitches in her forehead - she didn't react much - just hated being held down.

She only in recent months can kinda make lines with a crayon but only when told. Seems she has no interest in doing things unless she is forced & then of course, her screaming gets even louder & angrier. Yep, it is ear-shattering & the screaming at school disrupts the typical kids in other classes (it is a regular public school with an Autism program).
Anyway, she has a long way to go & has made some progress, sure, but what a typical kid picks up intuitively in a very short time, she has to be taught over & over & over....potty training has been in effect 2 yrs now & she still doesn't get it...and, will she ever indicate to us that she has a messy diaper? NO. She smears herself & the walls with it. argh! She also has a problem with sticking her finger in her nose constantly...she then has MAJOR nose bleeds & it is everywhere...she looks like an accident victim & she doesn't come to me or get scared, so instead she smears it all over herself & things! The school always calls me to pick her up when she gets nose bleeds...
day by day...

Maybe, I need this - just came across today: http://www.vermontcountrystore.com/shop ... ctID=33049

It's my understanding that mercury has been removed since the 90's. In 2000 My wife was required to have additional vaccinations in Colombia prior to entering the U.S. We have no way of knowing if her shots contained mercury. Our son was born 2001 - so it makes us wonder if there was a mercury toxicity issue.

I think the bottom line is what you've already noted. We really don't know the exact causes. It's clearly genetic along with some kind of environmental insult such as mercury. As you also noted autism has only recently been defined - it's a relatively new disorder that has possibly been around forever but just never properly defined in clinical terms.

Your daughter's behaviors are grueling. We have/had similar problems in various degrees. Like you mentioned about intuition - it's so difficult to have to repeat the same thing 1,000 times for no change. Hang in there. It may be on the 1,001 try that she gets it. About the potty training. Have you tried leaving her diaper and pants off? I doubt that a doctor or institution would support this - and it does sound cruel - but it worked for our son.

[MCC620]

I love someone with Autism!

Amazingly enough Journey brought him and his wonderful parents into my life. They have become extended family to me and my mother.

I applaud each of you in this thread for your efforts on behalf of your children. It is worth it!

[ohsherrie]

My nephew has recently been diagnosed with Asperger's Syndrome. I don't understand all of it, but it's within the Autism Spectrum. I had no idea how many variations were within the spectrum until I started reading up on this syndrome.

He's 7, extremely intelligent, and his symptoms have been written off as simply bad behaviour up until now. He functions quite normally for the most part but tends to get obsessed with one interest, whether a school subject or another activity, and neglects others. He also has trouble filtering what he says. He doesn't understand why something that's not a "bad word" is inappropriate to say and will never be politically correct. He was expelled from the day care center he goes to after school for insisting in front of the other children that the care giver explain to them all why boys have penises and girls have vaginas.

According to the information that my sister has been given it seems that Bill Gates has this disorder and it's now suspected that Einstein did too. I guess there are as many different levels of savant-ism as there are within the autism spectrum.

[Wheels Of Fyre]

My nephew has recently been diagnosed with Asperger's Syndrome. I don't understand all of it, but it's within the Autism Spectrum. I had no idea how many variations were within the spectrum until I started reading up on this syndrome.

He's 7, extremely intelligent, and his symptoms have been written off as simply bad behaviour up until now. He functions quite normally for the most part but tends to get obsessed with one interest, whether a school subject or another activity, and neglects others. He also has trouble filtering what he says. He doesn't understand why something that's not a "bad word" is inappropriate to say and will never be politically correct. He was expelled from the day care center he goes to after school for insisting in front of the other children that the care giver explain to them all why boys have penises and girls have vaginas.

According to the information that my sister has been given it seems that Bill Gates has this disorder and it's now suspected that Einstein did too. I guess there are as many different levels of savant-ism as there are within the autism spectrum.

Asperger's is essentially autism but without any delays in speech development. Autism is truly a huge spectrum because it affects everyone differently. There are common behaviors however.

Upon learning about our children I've concluded that I'm somewhere in the spectrum, too. I took an inventory of my childhood (and my MR and BT posts!) and it's pretty clear to me. I hate that. I hate myself for passing this on to our children. Knowing how difficult I had things - knowing that I've passed it on. It's all too much.

I can beat up myself later. The best thing I can do NOW is to do whatever I can to help our boys. I suppose I have an advantage considering that I think like them! As with all afflicted children it's about trying to understand their particular autism. Over everything else that's perhaps what makes it so challenging.

[ohsherrie]

There's just too much of it Fyre. It has to be coming from something other than genetics. I'm sure some children are more suseptible to it than others for some genetic reason, but I firmly believe the childhood vaccinations are the trigger or catalyst for the disorder to form.

In other words, I don't think your kids inherited it from you. I think the genetic tendency may be inherent, but not the disorder itself.

[Just Mindy]

There's just too much of it Fyre. It has to be coming from something other than genetics. I'm sure some children are more suseptible to it than others for some genetic reason, but I firmly believe the childhood vaccinations are the trigger or catalyst for the disorder to form.

In other words, I don't think your kids inherited it from you. I think the genetic tendency may be inherent, but not the disorder itself.

One of my daughter's therapists said the same exact thing...that she thinks the vaccines TRIGGER something in them. Of course there's no proof, but that's just her take on it. She believes that it only affects some kids that have a genetic predisposition towards it.

My daughter is a high functioning autistic child, and there are no other instances of autism on either side of the family. Both of my other daughters are developing normally. I don't understand it, really, and all I can do now is get her as much help and therapy as I can.

Frustrating at times, yes. But she can be the most lovable little girl, sometimes even more than her sisters.

[amaron]

I have to take a moment to applaud JOURNEY for their autism charity efforts. Including myself I know there are several other board members between here and BT that have autistic children. Life is challenging enough for "normal" children and adults. Autism adds challenges that are truly frustrating. Autism not only presents a child with major hurdles but also makes it next to impossible for anyone to help them because it affects social and interpersonal communication skills and development.

There's hope. Early intervention is most critical. We suspected our oldest son when he was about 18 months however it took until he was 4 years old before he was properly diagnosed. He's now 6 and has shown incredible progress in his special needs class. Our 2 year old was just diagnosed last week. Working closely with our pediatrician we're trying to get him into a special program ASAP.

My heart goes out to our children and all others and their parents who face the challenges of autism. JOURNEY's contributions and attention to autism help to research as well as bring attention via their celebrity to a very real and growing problem. I urge you to research this for yourselves and learn what you can - do what you can - contribute what you can be it money, time, or neighborly love.

To those of you who have children that are afflicted: Stay strong - your children can't make it without you.

My 3 year old was diagnosed with PDD-NOS a few months ago. We have him in school 2-5 days a week. If you need any ideas, feel free to send me a PM.

[squirt1]

I have a cousin whose grandaughter is Autistic and also another friend of mine has a son. 4 studies to consider are the relationship to ADD /ADHD, age of parents at conception, damage to the 15th chromosone and the most promising is the relationship of mycoplasmas .If studies prove this out Antiboitics may by the cure. Keep the hope !! Jason McAlwein shows what can be achieved for many . As far as when 1st diagnosed, most likely it was considered somthing else for a long time or underdianosed. It looks like many mental disorders will be found to be caused by these bacteria. It is amazing that we know rabbies goes to the brain and a connection was never made until now for other brain related disorders. DUH???? Google Mycoplasma. God bless you Journey !