I think the biggest pile of bullshit in all of this is they don't live with your son all the time, so they don't have to deal with it and they can claim it's "not that bad" as an excuse to not help. Those bastards who can help think they can pick and choose who is "worthy" and forget that their blood is just as red as James' blood and they're made of the same stuff he is. We're all human. You are strong.
They should be willing to pay for any specialized care that is showing results at all! The world doesnt understand autistics so they dont care. It sucks!
@nyxpooka You are right. The world doesn't seem to understand how to treat autistics, especially the most severe, but the good news is these videos are spreading awareness and we are making progress in helping our son live a better life. In July, I advocated for nicotine patch therapy. So far, it's reduced his self-injurious behaviors. Nicotine elevates choline in brain. Our son's fMRI showed 'blunted choline." If only doctors would take time to look at ALL the tests and think outside the box
both you and your son are amazing. I know you probably dont get a lot of time but try reading "strange son" by Portia Iverson and "How can I talk if my lips dont move" by tito mukhopadhyay (a non verbal autistic). I'm fighting in uk for my non verbal child too - i was told services need to be justified to the taxpayer ie a good return likelihood that my son could contribute back to society ...I feel for you all.
It seems that unless they feel there is a good chance your child can benefit from interventions and specialist help they are reluctant to provide them - this is probably why the most severe children fall through the holes. I asked them when are THEY planning to justify the bank bailouts and spending on illegal wars? Humanity is lost where money rules. Never accept the word NO. hugs x
I dont believe this type of attitude towards our children will last for much longer, the system globally is due for a huge shake up. Autism has its part to play in this. Your son will be fine - its those who have bought into the matrix ignoring compassion and humanity in favour of money - who will struggle. I cant tell you what to believe but I promise it will all work out just fine,. Hang in there :D
also I don't believe he hit himself 1 time a day either! Bureaucracy do everything they can to do the least work and offer as little aid as possible to save their money
@Danny66679 Son Rise seems like a fine program for some families. I don't see it helping our situation. But they seem okay. There's conflicting reports on this program. Some swear by it. Others say it's a scam.
II: what is needed? A good heart, a good will? A fairer system? I dont believe a fair system can be based on current economical power. Until that time comes, (it will, but too late for our children I think), individual answers will be coming form the parents. And in my experience, the most pro-active, informed and determined the parent is, the more likely the outcomes will be favourable, though developments remain seriously capped by personal funds.
There much wide spread appalling situations crippling the society, if improvement occur, it will more likely be in area which are the most commonly encountered; e.g. family loosing their home because they can no longer cover their cancer treatment or heart condition. Remember these discriminations occur even when one has the answer in term of treatment. So, what can be hoped for acute chronic cases where most professionals do not have answers.
Would Youtube videos, preaching to the converted or to those opponents make a difference? Why dont you take Jamey to another country like Sweden, I very much doubt he would be ignored there. I think there are a lot of good lessons to learn from M Moores movies. Your health care system must be scarped as fast as possible, together with a general clean up of social/educational services.
We need a reality show where our politicians and policy makers spend a few days with a family like mine, dealing with severe autism and self injury. I'd love to see how they handle it.
Sorry I used my daughter's account by inadvertence- There is also a general lack of integration across disciplines. The problem you are facing relates to wider dysfunction in both the health care and educational systems. Have you watched M. Moores Sicko Movie? How many American citizens are being denied the medical support they need? The system you have in the US allows people in need to be dumped. This is the true depth of the problem you are facing.
Your situation is distressing but you are not alone experiencing frustration in a system that is unable to meet peoples needs and it extends well beyond the issues of disability. In your specific instance though, whilst shock therapy, a purely behavioural intervention might have been successful, the answers must involve both health and behavioural interventions. Almost certainly, in neither area, you have had access to most advanced understanding, even with so many involved.
@Mynameisromane Skin shock therapy was very effective, but I also know it can't be used alone. It must be part of a comprehensive treatment care plan that involves, at some logical point, fading the skin shock. In Jamey's case, skin shock was abruptly stopped when he went into group home, and though state promised and swore they'd provide "alternatives to skin shock" they NEVER DID. And he regressed.
i think people dont want to deal with people with complex medical conditions like us because of their laziness. Well, I just have to finish the book and MAYBE one day people will wake up and get it.
In California, EVERY single child with a PHYSICAL DISABILITY should receieve CCS. Want proof? message me. I know what you mean
, during the first years of my life, nobody didnt care about me. The school was careless about me, theey just sing to me and play. Then 1st first, the teacher aides was so terible that all they taught me was writing my name every single day. I think they wanted me to write "perfectly". Remember the book I'm writing? I'm still writing it. Why dont you write a book?
@iamacoolkorean I've been working on a book, but the story is on-going, I'm not sure how to write the story at this point. It's more a made for TV movie because what Jamey does is too dramatic for just words. It needs to be shown. I wonder if an actor could handle punching themselves? R any of them secretely self abusive....maybe they could tap into Jamey's frustration..and play the role.
@bunnyz324 I think a good movie would focus on the anomoly of self injurious behavior in autism, and what living with this does to a family individually and collectively. Also focus on the corrupt system serving disabled and the people inside this system who don't know what the hell they're doing, but are in charge of all the funding. Exposing the inept system serving autistic people is the side of the story that would be the best part of a movie script. You have to fight it to survive.
I think the biggest pile of bullshit in all of this is they don't live with your son all the time, so they don't have to deal with it and they can claim it's "not that bad" as an excuse to not help. Those bastards who can help think they can pick and choose who is "worthy" and forget that their blood is just as red as James' blood and they're made of the same stuff he is. We're all human. You are strong.
streamofawareness 1 month ago
They should be willing to pay for any specialized care that is showing results at all! The world doesnt understand autistics so they dont care. It sucks!
nyxpooka 7 months ago
@nyxpooka You are right. The world doesn't seem to understand how to treat autistics, especially the most severe, but the good news is these videos are spreading awareness and we are making progress in helping our son live a better life. In July, I advocated for nicotine patch therapy. So far, it's reduced his self-injurious behaviors. Nicotine elevates choline in brain. Our son's fMRI showed 'blunted choline." If only doctors would take time to look at ALL the tests and think outside the box
kgaccount 6 months ago
I'm supposedly high functning and the school system isn't that much better for high functning kids either.
PinkPunkyKat 1 year ago
IT IS NOW 2010. AND I STILL HAVE NO ANSWERS.
MrBigbosslady 1 year ago
both you and your son are amazing. I know you probably dont get a lot of time but try reading "strange son" by Portia Iverson and "How can I talk if my lips dont move" by tito mukhopadhyay (a non verbal autistic). I'm fighting in uk for my non verbal child too - i was told services need to be justified to the taxpayer ie a good return likelihood that my son could contribute back to society ...I feel for you all.
ascend2luv 1 year ago
It seems that unless they feel there is a good chance your child can benefit from interventions and specialist help they are reluctant to provide them - this is probably why the most severe children fall through the holes. I asked them when are THEY planning to justify the bank bailouts and spending on illegal wars? Humanity is lost where money rules. Never accept the word NO. hugs x
ascend2luv 1 year ago
I dont believe this type of attitude towards our children will last for much longer, the system globally is due for a huge shake up. Autism has its part to play in this. Your son will be fine - its those who have bought into the matrix ignoring compassion and humanity in favour of money - who will struggle. I cant tell you what to believe but I promise it will all work out just fine,. Hang in there :D
ascend2luv 1 year ago
You just want answers -- I understand!
kittypride2 1 year ago
They treat these kids like they are non-exsistent. It's horrible! They need our attention and help!!!!!!!!
kittypride2 1 year ago
also I don't believe he hit himself 1 time a day either! Bureaucracy do everything they can to do the least work and offer as little aid as possible to save their money
Danny66679 1 year ago
you truly are a hero
Danny66679 1 year ago
have you checked out the son rise program?
Danny66679 1 year ago
@Danny66679 Son Rise seems like a fine program for some families. I don't see it helping our situation. But they seem okay. There's conflicting reports on this program. Some swear by it. Others say it's a scam.
kgaccount 1 year ago
II: what is needed? A good heart, a good will? A fairer system? I dont believe a fair system can be based on current economical power. Until that time comes, (it will, but too late for our children I think), individual answers will be coming form the parents. And in my experience, the most pro-active, informed and determined the parent is, the more likely the outcomes will be favourable, though developments remain seriously capped by personal funds.
Skymaker69 1 year ago
There much wide spread appalling situations crippling the society, if improvement occur, it will more likely be in area which are the most commonly encountered; e.g. family loosing their home because they can no longer cover their cancer treatment or heart condition. Remember these discriminations occur even when one has the answer in term of treatment. So, what can be hoped for acute chronic cases where most professionals do not have answers.
Skymaker69 1 year ago
I have just finished watching all of the videos you have posted.
You seem to be an absolutely amazing, strong woman.
Thank God Jamie was blessed with a mother like you.
asgarlozo 1 year ago
Would Youtube videos, preaching to the converted or to those opponents make a difference? Why dont you take Jamey to another country like Sweden, I very much doubt he would be ignored there. I think there are a lot of good lessons to learn from M Moores movies. Your health care system must be scarped as fast as possible, together with a general clean up of social/educational services.
Skymaker69 1 year ago
We need a reality show where our politicians and policy makers spend a few days with a family like mine, dealing with severe autism and self injury. I'd love to see how they handle it.
kgaccount 1 year ago
Sorry I used my daughter's account by inadvertence- There is also a general lack of integration across disciplines. The problem you are facing relates to wider dysfunction in both the health care and educational systems. Have you watched M. Moores Sicko Movie? How many American citizens are being denied the medical support they need? The system you have in the US allows people in need to be dumped. This is the true depth of the problem you are facing.
Skymaker69 1 year ago
Your situation is distressing but you are not alone experiencing frustration in a system that is unable to meet peoples needs and it extends well beyond the issues of disability. In your specific instance though, whilst shock therapy, a purely behavioural intervention might have been successful, the answers must involve both health and behavioural interventions. Almost certainly, in neither area, you have had access to most advanced understanding, even with so many involved.
Mynameisromane 1 year ago
@Mynameisromane Skin shock therapy was very effective, but I also know it can't be used alone. It must be part of a comprehensive treatment care plan that involves, at some logical point, fading the skin shock. In Jamey's case, skin shock was abruptly stopped when he went into group home, and though state promised and swore they'd provide "alternatives to skin shock" they NEVER DID. And he regressed.
kgaccount 1 year ago
i think people dont want to deal with people with complex medical conditions like us because of their laziness. Well, I just have to finish the book and MAYBE one day people will wake up and get it.
iamacoolkorean 1 year ago
and maybe somebody will want to help him
iamacoolkorean 1 year ago
In California, EVERY single child with a PHYSICAL DISABILITY should receieve CCS. Want proof? message me. I know what you mean
, during the first years of my life, nobody didnt care about me. The school was careless about me, theey just sing to me and play. Then 1st first, the teacher aides was so terible that all they taught me was writing my name every single day. I think they wanted me to write "perfectly". Remember the book I'm writing? I'm still writing it. Why dont you write a book?
iamacoolkorean 1 year ago
@iamacoolkorean I've been working on a book, but the story is on-going, I'm not sure how to write the story at this point. It's more a made for TV movie because what Jamey does is too dramatic for just words. It needs to be shown. I wonder if an actor could handle punching themselves? R any of them secretely self abusive....maybe they could tap into Jamey's frustration..and play the role.
kgaccount 1 year ago
@kgaccount an actor may play your son punching himself but they're not sure what to make a movie based on your son
maybe someone can play the role of your son but you can write a book about your son's life
bunnyz324 8 months ago
@bunnyz324 I think a good movie would focus on the anomoly of self injurious behavior in autism, and what living with this does to a family individually and collectively. Also focus on the corrupt system serving disabled and the people inside this system who don't know what the hell they're doing, but are in charge of all the funding. Exposing the inept system serving autistic people is the side of the story that would be the best part of a movie script. You have to fight it to survive.
kgaccount 8 months ago
@kgaccount do you know person with nonverbal autistic adults?
bunnyz324 8 months ago