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An open discussion about the troubled parent industry

Ann Romney Says She’ll Work With Troubled Teens as First Lady
http://abcnews.go.com/blogs/politics/20 ... st-lady-3/
By Russell Goldman
Oct 5, 2011 6:33pm
 
At a campaign stop in Iowa, Ann Romney, wife of GOP frontrunner Mitt Romney, said working with “at risk” kids would be the cause she devotes herself to if she becomes first lady.

“At risk youth has been a concern of mine and love of mine for a lot of years,” she said.

Mitt Romney, the former Massachusetts governor, hinted that his wife would choose to work with troubled young people if he were elected president as he campaigned in Florida earlier this week.
 

User Comments here:

a little early to be picking out the drapes

Posted by: huge | October 5, 2011, 6:39 pm 6:39 pm


I’d like to know why her husband’s company, Bain Capital, owns the Aspen Schools with have lots of allegations for abuse.

Would you also ask her about her husbands connections with Robert Litchfield, the owner of the WWASP programs which were closed due to abuse and Mel Sembler, the founder of Straight Inc which has over 40 suicides directly linked to it and thousands of brainwashed kids walking around today as adults?

And how her husband has Mel Sembler as his finance campaign manager and had to ask Robert Litchfield to step down last election due to the law suits he was facing?

She has no idea what’s in store for her….thousands of abused kids will start speaking out. I am one of those that was abused by Mel Sembler as a child.

Posted by: Thomas Moore | October 6, 2011, 10:46 am 10:46 am


I would also like her to answer for her husbands connections to Robert Litchfield, founder of the worlwide association of specialty programs whom had had more than half of their “schools” shut down by FOREIGN governments due to allegations of child abuse (trust me these allegations are credible, I was in one of these places myself).

If Romney becomes President he is going to be held accountable for the choices that he has made. If that’s the result, then he got what he intended to use their words against them.

Posted by: Drew Ramsauer | October 6, 2011, 11:02 am 11:02 am


As someone who attended an overseas WWASP schools, one of the programs that provided a great deal of funding to Romney’s campaign, I find it outrageous that he would allow for any further ties to be made between him and this abusive industry. Even the smallest amount of research on the programs that have supported him (which his wife would likely pay back through her involvement) will reveal cases of death, neglect, abuse, and deceptive marketing. This is an outrage and I know that I personally will be speaking out about this issue. I hope that ABC News will present the stories of teens who suffered through this industry an outlet as well, in the effort to be balanced. “Help” should never come at the cost of abuse.

Posted by: Chelsea | October 6, 2011, 11:08 am 11:08 am


The sheer irony and horror to see such a lady associated with so many monsters claim to even want to help the children who suffered do to the company her and her husband choose to keep. Her campaign (the campaign of her husband) is funded from the abuse, manipulation, and death of troubled youth. The suffering of youth was and is mere road bumps ignored and cast aside in the power and political growth of the Romney Empire. If they choose not to protect or help our youth, the future of our country, then how can we hope to even trust them with our nation? If she is serious about what she claims then I would like to see her push for The Stop Child Abuse in Residential Programs for Teens ACT of 2011 to show she is willing to go against the abusers she has associated herself with and begin to reform the troubled teen industry. If not then it is more mere political promises that were never meant to be kept.

Posted by: James | October 6, 2011, 3:04 pm 3:04 pm


Ann Romney will work with troubled teens if Mitt’s elected? Why wait? Do some good now, Ann;
if your heart is truly in it, you should act now. Judging from what I’ve read on these posts, you
have a lot of work to do to fix some broken kids with connections to the schools. I wouldn’t vote for
Mitt is he is nominated anyway, and I admit to be quite uninformed about the schools because I
avoid reading Republican’s bios, but I will make it a point to read up on this one. Then, when I
ask others to not vote Republican, I’ll have a bit more substance to back it up with.

Posted by: carci | October 6, 2011, 4:25 pm 4:25 pm


Carci, I reccommend you research WWASP, Straight Inc., and Robert Lichfield himself. Those are the kinds of people this woman plans on working with.

Posted by: Whitney | October 7, 2011, 12:29 pm 12:29 pm


joy behar clones. I live about 3 streets from Bob Litchfields wife in LaVerkin Ut, and have known the family for 30+ years. They are divorced. They have met Mitt Romney once, Patti said, and it was a “hi and a handshake.” Mitt wouldn’t know the litchfields from adam. It amazes me how one women gets on here and conjures up some imagined connection, and the witches w/ a “b” jump in and start snarling for blood. This women has suffered so much, and yet has been a wonderful wife, mother, and grandmother. In today’s Lady Gaga society, that’s just discusting isn’t ladies. Wait, never mind the ladies.

Posted by: Bj Jones | October 9, 2011, 4:26 am 4:26 am


Mitt Romneys relationship with Mel Sembler and his followers like Robert Litchfield are just the tip of the iceberg of well documented cases of torture and abuse. I am certain that torture and child abuse are not Mormon core values…

But wait…it gets better…Mitts primary money man Mel Sembler founded operation Straignt Inc. which was shut down for client abuse. Sembler while Ambassador to Italy also facilited kidnapping and enhanced interrogation of terrorist suspects.

Most troubling is Semblers involvement in the lead-up to the Iraq war. Sembler facilitated the creators of the original false WMD Intell used to start the Iraq war.

Google “Sembler” and “phase2b.pdf”, Open the Senate Intelligence Report and drill down to page 17 to read about Semblers involvement.

We should expect similiar activties by Sembler if Mitt Romney is elected.
Bomb Bomb Bomb….Bomb Bomb Iran….will become Romneys campaign theme song…

Posted by: OperationTailGunner | October 21, 2011, 2:55 pm 2:55 pm


Whitney: Chatting with Bob’s Ex does not an informed mind make. I am no Joy Bear clone. I have never voted for a democrat in a national election in my life. I am fairly conservative in my views with a bend towards Libertarianism. I am also very familiar with Mr. Romney’s associations. I know who Mel Sembler is. I know even better who Robert Litchfield is. I know both men work/worked closely with Romney and his campaigns. This is unforgivable. If Romney is nominated I will not be voting for the Republican candidate in this election. No way at all I could bring myself to do that. But hey – if you know Bob’s ex maybe you can help us get in touch with Narvin’s ex – there are those who would like to have a friendly chat with her.

Posted by: Karen | November 7, 2011, 9:46 am 9:46 am


Editing – I mistook who posted what. My comment to Whitney should have gone to *BJ Jones*.
Also, I kept getting an err message so will try again –

BJ Jones:

“Chatting with Bob’s Ex does not an informed mind make. I am no Joy Bear clone. I have never voted for a democrat in a national election in my life. I am fairly conservative in my views with a bend towards Libertarianism. I am also very familiar with Mr. Romney’s associations. I know who Mel Sembler is. I know even better who Robert Litchfield is. I know both men work/worked closely with Romney and his campaigns. This is unforgivable. If Romney is nominated I will not be voting for the Republican candidate in this election. No way at all I could bring myself to do that. But hey – if you know Bob’s ex maybe you can help us get in touch with Narvin’s ex, [Flora] there are those who would like to have a friendly chat with her. “

Posted by: Karen | November 7, 2011, 9:51 am 9:51 am

I found this story very interesting for the scientific importance of immortal cells and the legal ramifications of discarded cells ("This issue and Mrs. Lacks' situation was brought up in the Supreme Court of California case of Moore v. Regents of the University of California. The court ruled that a person's discarded tissue and cells are not their property and can be commercialized.")
My problem is with when and if Mrs Lacks knew they were taking her cells. I say taking because it appears in this particular story that the doctors and researchers were asking Mrs Lacks to come in for future follow up appointments with the hidden additional purpose of extracting more cancerous cells for research. They were not communicating with her.
It is unethical to not explain to the patient that their cells that would normally be discarded and never used for any purpose are valuable for future tests and monetarily could have immense value.


http://www.theopennotebook.com/2011/11/ ... tta-lacks/
How Rebecca Skloot built The Immortal Life of Henrietta Lacks


About The Immortal Life of Henrietta Lacks
http://rebeccaskloot.com/the-immortal-life/

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor black tobacco farmer whose cells—taken without her knowledge in 1951—became one of the most important tools in medicine, vital for developing the polio vaccine, cloning, gene mapping, in vitro fertilization, and more. Henrietta’s cells have been bought and sold by the billions, yet she remains virtually unknown, and her family can’t afford health insurance.
Soon to be made into an HBO movie by Oprah Winfrey and Alan Ball, this New York Times bestseller takes readers on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers filled with HeLa cells, from Henrietta’s small, dying hometown of Clover, Virginia, to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells. The Immortal Life of Henrietta Lacks tells a riveting story of the collision between ethics, race, and medicine; of scientific discovery and faith healing; and of a daughter consumed with questions about the mother she never knew. It’s a story inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we’re made of.

http://en.wikipedia.org/wiki/Henrietta_Lacks

In scientific research
 The cells from Henrietta's tumor were given to researcher George Gey, who "discovered that [Henrietta's] cells did something they'd never seen before: They could be kept alive and grow."[13] Before Henrietta, the cells would only survive for a few days. Scientists spent more time trying to keep the cells alive than performing actual research on the cells. Some cells in Lacks's tissue sample behaved differently than others. George Gey was able to isolate one specific cell, multiply it, and start a cell line. Gey named the sample "HeLa", after the initial letters of Henrietta Lacks' name, to protect her identity. As the first human cells grown in a lab that were "immortal" (did not die after a few cell divisions), they could then be used for conducting many experiments. This represented an enormous boon to medical and biological research.[1]

As reporter Michael Rogers stated, the growth of HeLa by a researcher at the hospital helped answer the demands of the 10,000 who marched for a cure to polio just shortly before Lacks' death. By 1954, HeLa was being used by Jonas Salk to develop a vaccine for polio.[1][11] To test Salk's new vaccine, the cells were quickly put into mass production in the first-ever cell production factory.[14]

Demand for the HeLa cells quickly grew. Since they were put into mass production, Henrietta's cells have been mailed to scientists around the globe for "research into cancer, AIDS, the effects of radiation and toxic substances, gene mapping, and countless other scientific pursuits".[11] HeLa cells have been used to test human sensitivity to tape, glue, cosmetics, and many other products.[1] Scientists have grown some 20 tons of her cells.[1][15]

Doctors still have not discovered the reason for HeLa cells' unique vigor, but suspect that it is due to altered telomerase function. There are almost 11,000 patents involving HeLa cells.[1]

In the early 1970s, the family started getting calls from researchers who wanted blood samples from them to learn the family's genetics (eye colours, hair colours, and genetic connections). The family wondered why and this is when they learned about the removal of Henrietta's cells. No one else in the family had the traits that made her cells unique.[1]


http://en.wikipedia.org/wiki/HeLa

HeLa
From Wikipedia, the free encyclopedia
For other uses, see Hela (disambiguation).
Dividing HeLa cells as seen by scanning electron microscopy

A HeLa cell (also Hela or hela cell) is a cell type in an immortal cell line used in scientific research. It is the oldest and most commonly used human cell line.[1] The line was derived from cervical cancer cells taken on February 8, 1951[2] from Henrietta Lacks, a patient who eventually died of her cancer on October 4, 1951. The cell line was found to be remarkably durable and prolific as illustrated by its contamination of many other cell lines used in research.[3][4]

George Otto Gey and Henrietta Lacks
HeLa cells stained with Hoechst 33258

The cells were propagated by George Otto Gey shortly before Lacks died in 1951. This was the first human cell line to prove successful in vitro, which was a scientific achievement with profound future benefit to medical research. Gey freely donated both the cells and the tools and processes his lab developed to any scientist requesting them, simply for the benefit of science. Neither Lacks nor her family gave Gey permission to harvest the cells, but, at that time, permission was neither required nor customarily sought.[5] The cells were later commercialized, although never patented in their original form. Then, as now, there was no requirement to inform a patient, or their relatives, about such matters because discarded material, or material obtained during surgery, diagnosis, or therapy, was the property of the physician and/or medical institution. This issue and Mrs. Lacks' situation was brought up in the Supreme Court of California case of Moore v. Regents of the University of California. The court ruled that a person's discarded tissue and cells are not their property and can be commercialized.[6]

At first, the cell line was said to be named after a "Helen Lane" or "Helen Larson", in order to preserve Lacks' anonymity. Despite this attempt, her real name was used by the press within a few years of her death. These cells are treated as cancer cells, as they are descended from a biopsy taken from a visible lesion on the cervix as part of Mrs. Lacks' diagnosis of cancer. A debate still continues on the classification of the cells.[citation needed]

HeLa cells are termed "immortal" in that they can divide an unlimited number of times in a laboratory cell culture plate as long as fundamental cell survival conditions are met (i.e. being maintained and sustained in a suitable environment). There are many strains of HeLa cells as they continue to evolve by being grown in cell cultures, but all HeLa cells are descended from the same tumor cells removed from Mrs. Lacks. It has been estimated that the total number of HeLa cells that have been propagated in cell culture far exceeds the total number of cells that were in Henrietta Lacks' body.[7]

Does anybody know anything about this organization. Also where are they on TTI abuses. I didn't read anything that involved investigation into programs. I heard about this organization the other day.


http://www.cchr.org/

CITIZENS COMMISSION ON HUMAN RIGHTS:
 The Citizens Commission on Human Rights (CCHR) is a nonprofit mental health watchdog, responsible for helping to enact more than 150 laws protecting individuals from abusive or coercive practices. CCHR has long fought to restore basic inalienable human rights to the field of mental health, including, but not limited to, full informed consent regarding the medical legitimacy of psychiatric diagnosis, the risks of psychiatric treatments, the right to all available medical alternatives, and the right to refuse any treatment considered harmful.

http://www.cchr.org/about-us/cchr-accomplishments.html

Accomplishments of the Citizens Commission on Human Rights, Bringing Psychiatry to Justice for More than Four Decades

The Citizens Commision Commission on Human Rights has been on the front lines of mental health reform since 1969. Acknowledged by the Special Rapporteur to the United Nations Human Rights Commission as responsible for “many great reforms” that protect people from psychiatric abuse, CCHR has documented thousands of individual cases that demonstrate psychiatric drugs and often-brutal psychiatric practices create insanity and cause violence.

This is about as disgusting a act as I have read in sometime.
http://www.newschief.com/article/201105 ... ornography.

Polk detention deputy charged with child abuse, pornography

By JEREMY MAREADY
NYT Regional Media Group


Published: Saturday, May 28, 2011 at 7:16 a.m.
Last Modified: Saturday, May 28, 2011 at 7:16 a.m.
( page 1 of 2 )

BARTOW -- A 45-year-old Polk County sheriff's detention deputy has been arrested and accused of beating two nude children with a leather sex paddle, videotaping the acts and sending the videos to her online boyfriend, sheriff's officials said Thursday.

Pagoria Robin Leigh Pagoria was charged with three counts each of aggravated child abuse, production of child pornography, promotion of child pornography and possession of child pornography, reports said.

Pagoria was hired in June 2005 and paid $40,916 a year. She resigned Thursday from her detention deputy job at the Central County Jail.

Detectives said Pagoria severely paddled two girls, between 10 and 17 years old, filmed the beatings and gave the video to a person who lives outside of Florida.

"We employ 1,900 people," Polk Sheriff Grady Judd said. "You don't expect anyone to commit felonious conduct. But to create child pornography and to beat children, it's inexcusable. There are not words to express how incensed, outraged and angry I am."

The paddling incidents involving the children began three to five months ago and occurred most recently May 20, the Sheriff's Office said.

Pagoria told detectives she paddled the two girls with a tawse, a leather sex paddle, to humiliate and discipline them. Pagoria had fashioned a wooden desk and cut off two of the legs so the desk would slope, reports said.

Pagoria would make the children undress, lay on the desk, and tie their feet and handcuff their wrists to the desk so they couldn't move during the beatings, detectives said in an arrest affidavit.

The girls would be spanked between 50 and 60 times, reports said. Pagoria's online boyfriend, who she met though spankfinders.com, would determine the severity of the punishment.


Click to enlarge Pagoria
Robin Leigh Pagoria was charged with three counts each of aggravated child abuse, production of child pornography, promotion of child pornography and possession of child pornography, reports said.

Pagoria was hired in June 2005 and paid $40,916 a year. She resigned Thursday from her detention deputy job at the Central County Jail.

Detectives said Pagoria severely paddled two girls, between 10 and 17 years old, filmed the beatings and gave the video to a person who lives outside of Florida.

"We employ 1,900 people," Polk Sheriff Grady Judd said. "You don't expect anyone to commit felonious conduct. But to create child pornography and to beat children, it's inexcusable. There are not words to express how incensed, outraged and angry I am."

The paddling incidents involving the children began three to five months ago and occurred most recently May 20, the Sheriff's Office said.

Pagoria told detectives she paddled the two girls with a tawse, a leather sex paddle, to humiliate and discipline them. Pagoria had fashioned a wooden desk and cut off two of the legs so the desk would slope, reports said.

Pagoria would make the children undress, lay on the desk, and tie their feet and handcuff their wrists to the desk so they couldn't move during the beatings, detectives said in an arrest affidavit.

The girls would be spanked between 50 and 60 times, reports said. Pagoria's online boyfriend, who she met though spankfinders.com, would determine the severity of the punishment.

Pagoria told investigators she has never met the man, who was not named in reports, but would send him video recordings of the spanking sessions.

In interviews with detectives and caseworkers from the Department of Children and Families on Wednesday, the children described the sessions, which caused hemorrhaging and lacerations.

Pagoria told detectives that she had a fetish for spanking and would make videos of her spanking herself and masturbating and upload them to an online website for her boyfriend to watch, reports said.

Judd said after a review of Pagoria's personnel file, there were no indications in her psychological profile or polygraph tests that would indicate that she as interested in such acts.

Judd said detectives are early into the investigation of Pagoria's boyfriend and would be pursuing additional charges in the case.

My family has been dealing with a autistic child for sometime now. I noticed members had posted comments in the past. I have personally followed this case (I like PBS news and NPR radio). Thought it would be good reading. There are 5 more reports do out.
I also noticed the amount of High Functioning cases being placed with children with different mental and emotional disabilities in Treatment Centers. This I believe is just wrong.


REPORT    AIR DATE: April 18, 2011
Autism Now: Robert MacNeil Shares Grandson Nick's Story
SUMMARY
In the first of six reports in his Autism Now series, former NewsHour anchor Robert MacNeil takes viewers on a visit with his 6-year-old grandson, Nick, to see how autism affects the whole family. Nick experiences autism not just as a brain-development disorder, but also as physical ailments affecting his whole body.

86 Comments and 58 Reactions

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Transcript

ROBERT MACNEIL: In recent years, the diagnosis of autism has shown startling growth, now affecting one in 110 American children. For over two decades, parents desperate for answers and feeling slighted by the medical community have helped force to create services for their children, raise money for research and campaign for wider awareness of autism and for support from the government.

Today the picture is changing. Researchers now believe there is no simple genetic cause, that autism may involve multiple genetic pathways, and toxic materials in the environment may trigger the symptoms of autism. Autism once was considered only a brain disorder. Now, more doctors say it often involves serious physical illness.
 
And that's our first story tonight. Frankly, I have a personal motive in telling it, because it's about my grandson Nick, who is 6 and lives in Cambridge, Mass.

It's not easy connecting with Nick. We live in different cities. All my grandchildren are a little shy when we first meet again. But Nick's shyness is different.

One of the marks of autism is difficulty making eye contact and communicating, even with family members.

I've been a reporter on and off for 50 years, but I've never brought my family into a story, until Nick, because he moves me deeply. Also because I think his story can help people understand his form of autism and help me understand it better.

This was Nick when he was 9 months old, a healthy, alert and engaged baby with no apparent medical problems. Now at 6, my grandson seems like a different child, showing the classic symptoms of autism, a disorder in development, his difficulty connecting. Nick struggles with language, the rigidity and resistance to change Nick shares with other children with autism.
"I think pain in a child with autism is a very difficult thing to assess because a child with autism can't vocalize that. He will very often not come to you and say, 'I've got a bellyache.' He can't use those words."
- Dr. Timothy Buie, Massachusetts General Hospital

NICK: Now go home.

ROBERT MACNEIL: A tendency to suddenly appear absent, to withdraw into an emotionally detached inner world of his own.

Those symptoms are characteristic of the autism spectrum -- severe to mild -- in Nick's case, relatively mild. But beyond such mental difficulties, Nick has serious physical illness: in his digestive system, his mitochondria, the energy needed by his cells for normal activity, plus frequent small brain seizures, and extreme sensitivity to light and sound. How Nick was transformed from that healthy boy to Nick today is still devastating to his mother, my daughter Alison.

ALISON MACNEIL: When Nick was diagnosed, I actually hired a babysitter so that I could go sit in my car in a parking lot and cry because I couldn't do it here with the kids.

ROBERT MACNEIL: Alison was trained as a psychiatric social worker, but like many parents, has made virtually a new career of caring for her son with autism.

ALISON MACNEIL: I remember one day I was sitting at the computer, and he was about 16 months old. And I caught out of the corner of my eye that he was spinning one of Neely's doll's plates. And I'd never seen a child play that way before -- ever.

And I went in to interrupt him, and he wouldn't stop. And there was an intensity about it. And I had this sinking feeling in the pit of my stomach, because I knew something was wrong.

ROBERT MACNEIL: That worry sent Alison to a developmental pediatrician who confirmed their fears: Nick had autism.

ALISON MACNEIL: Nick was irritable, crying, inconsolable and now is not on track developmentally at all. He's gone backward.

So we went from a 15-month appointment where this child was A-OK, supposedly, and given the MMR, the DTaP and the Hib vaccines.

People say to me, Alison, it's a coincidence. Alison, how do you know this happened? Well, it's impossible for me to know. But what I will say is this: It was not a coincidence that my child was diagnosed with autism at the same time that his whole system shut down. Something happened to my child.

ROBERT MACNEIL: I understand Alison's suspicion, but public health authorities say there is no scientifically valid evidence that vaccines cause autism. And Alison found little support from the developmental pediatrician.

ALISON MACNEIL: When I said to her this child has not had a formed bowel movement since the 15-month shots, she said children with autism have diarrhea.

When I said that he was crying inconsolably, she said this is part of autism. They can't regulate their emotions. So it was all lumped under, "yes, we always see that with autism. It's just autism."

ROBERT MACNEIL: Nick's complex problems demanded a broader view of autism. Some call it a new paradigm, or a systemic illness, or a whole-body experience. One of the leaders of that new thinking is Dr. Timothy Buie, a pediatric gastroenterologist at Massachusetts General Hospital.

DR. TIMOTHY BUIE, Massachusetts General Hospital: Six months ago, he was so lethargic and so out of it that he came into the office and literally laid on the chair for a 30- or 40-minute visit. He never moved.

He wouldn't interact. He wouldn't give you any eye contact whatsoever. And at the end of the appointment, Mom picked him up and took him out and went home.

ROBERT MACNEIL: Dr. Buie found changes in the lower GI tract he called lymphoid-nodular hyperplasia -- inflammation and damage in his small intestine.

How does that affect the life of a child like Nick? For instance, does it give him pain?

DR. TIMOTHY BUIE: I think it can give pain. And I think pain in a child with autism is a very difficult thing to assess because a child with autism can't vocalize that. He will very often not come to you and say, "I've got a bellyache." He can't use those words. So he may exhibit that as a child who doesn't sleep well. He may exhibit that as a child who has a lot of increased agitation or hyperstimulatory-type behaviors.

And part of the problem with that is that we've accepted that those are behaviors that we often see in children with autism, and we've written it off to their autism. So it's very difficult to think through whether that's a marker for pain in some of those kids if we're unwilling to look for other reasons.

(Nick laughs)

ALISON MACNEIL: You're not leaving yet, come on. You're going to come here. No.

DR. TIMOTHY BUIE: He's looking remarkably better. He's active. He's happy. He's playful. He's turning off the lights, which some people would find to be a negative challenge. I don't think so. I think that's a child who's testing. And I think it's really interesting to see. And he walked right over happily, smiling, sat down -- a much different child.

ROBERT MACNEIL: Do you think the medical community and your contact with it understands this wider definition of autism?

ALISON MACNEIL: Emphatically no. They can't just refer these kids to early intervention and consider this a psychiatric or neuropsychiatric situation. They've got to stay involved and help the family get referrals for gastroenterology, to neurologists to look at whether or not there's seizure activity.

ROBERT MACNEIL: From its lowest ebb two years ago, Nick's condition has greatly improved as Alison found different doctors to diagnose and treat his other problems. But achieving even that level of progress, Nick's autism is having a profound effect on the family. All of their lives ultimately revolve around his needs. Certainly, that's how his 10-year-old sister, my granddaughter Neely, sees it. She's in a different kind of pain.

NEELY: I just don't like how autism affects the family. It just - it seems like it takes up too much time, and you usually get really bored of autism, because it's in your life all the time.

ROBERT MACNEIL: What things would you do if you didn't have a brother with autism?

NEELY: It just seems that a lot of money is spent on Nick's vitamins and Nick's doctors' appointments and Nick's everything, and it would change if we didn't have to get all that stuff.

ROBERT MACNEIL: I see. Are you worried about Nick?

NEELY: Yes.

ROBERT MACNEIL: Tell me what you're worried about, about him.

NEELY: Well, if he's going to stay autistic for the rest of his life.

ROBERT MACNEIL: Yes. And what would that mean, if he were?

NEELY: I don't know. It would get harder when he gets older, and there wouldn't be as much services to help him. Sometimes I worry that he might get lost because he doesn't really know what to do.

ROBERT MACNEIL: When you think about the future with Nick, what do you feel about that?

NEELY: Well, I hope that I -- I hope that he doesn't have to stay with me, kind of, and that I hope that he gets healed soon. Sometimes when other people, they -- their lives seem perfect, and when yours -- when yours -- you have to do something that you don't like, you don't usually want to do it, and though your autistic sibling does, and it seems unfair. And it seems like they get what they want and you don't.

ROBERT MACNEIL: Well, one of the things about life is that we all learn we have to do things we don't want to do, whether there's autism around or not.

NEELY: Yes, but it seems like it happens too much. I mean, there's going to be a few times when that happens, but it seems with an autistic brother or sister, it always happens.

ALISON MACNEIL: I don't know. I can't take the autism out of her life. You know? We try to make things -- you know, we try to do the best we can with it. But she's right, you know. In some ways, this is really unfair.

I would have to say that every family living with an autistic child makes massive sacrifices in every way. It takes a phenomenal amount of teamwork. And I think Dave and I have been pleasantly surprised to find that it has brought out probably the best in us. It doesn't leave a lot of energy left over.

ROBERT MACNEIL: Like the energy Nick's father, Dave, expends every evening.

DAVE: Hey Nick. What do you want to do do?

NICK: Go on buses.

DAVE: In a little bit, sure. Can I get a high five?

NICK: We have to go on the 72.

DAVE: OK.

ROBERT MACNEIL: Nick loves to ride on buses.

NICK: We have to go on the bus.

DAVE: Yes, we might do that. We might go some other places, too.

NICK: After the 72 bus.

ROBERT MACNEIL: So every day after work as a senior account executive at a public-relations agency, Dave devotes 90 minutes to a bus outing that Nick yearns for all day.

NICK: 72 to Belmont.

DAVE: Yes, we can go on the Belmont if you want.

ROBERT MACNEIL: On our day there, we change Nick's schedule so we can all go to the park before dark.

NICK: No. Go to Harvard Station.

ALISON MACNEIL: Yes, and you're going to go to Harvard Station later with Dad.

NICK: After?

ALISON MACNEIL: After we're done at the playground.

NICK: A bus ride?

ALISON MACNEIL: Yes, you're going to have one with Dad.

NICK: Sad.

ALISON MACNEIL: I know you're sad, sweat pea.

ROBERT MACNEIL: For exercise, they walk from their apartment the half mile to Harvard Square to wait, but not just for any bus.

NICK: We're going to go on the 72 bus.

ROBERT MACNEIL: The 72 takes them on a 20-minute loop through Cambridge and back to Harvard Square for the walk home. But tonight the 72 doesn't come and doesn't come.

NICK: That's the 71.

DAVE: Nope, that's the 73.

ROBERT MACNEIL: The eager little boy scans each arriving bus as though it carries all his happiness. And still it doesn't come.

DAVE: Want to go on the 73?

NICK: No.

ROBERT MACNEIL: After nearly an hour of waiting, looking sadder and sadder.

Nick, if the 72 doesn't come, should we take another bus?

NICK: Another bus.

ROBERT MACNEIL: He's persuaded with no tantrum to take another bus home.

Part of his improved physical condition has brought more patience, more tolerance for change.

DAVE: Alright, Nick. High five, bud.

ROBERT MACNEIL: We made a promised trip to the toy store.

So which one is Thomas?

Here you can see the disconnect between us.

Nick, which one is Thomas?

For me, the father of four children with four other grandchildren, seeking connection with Nick is a very poignant experience. To have a grandson who can tune me out or simply ignore me like this, make no eye contact for long stretches of time, gives me a strange and painful feeling.

ALISON MACNEIL: Say thank you to Grandpa.

NICK: Thank you to Grandpa.

ALISON MACNEIL: OK, there we go.

ROBERT MACNEIL: Thank you.

It warms my heart that Nick's physical problems are improving, and I'm lost in admiration for the patience and courage Alison and Dave bring to his constant care. I see my daughter, like many autism mothers, not only perplexed but sometimes amused and always intrigued by what may be going on in her son's mind.

Was poking around an found this site where it seems some children from HLA and RCS posted comments/experiences they had. I found them to be very interesting. It is a forum which also caters trolls. The comments I am referring to are the first 4-5 threads. Check this out if you haven't already.

Open Discussion On:
http://amazingforums.com/forum/BS4/forum.html

I am wondering if the comments on this site should be moved over here, this site appears to be dormant.

Interesting article I ran across over on the FaceBook Site for HLA/RCS. This article was written in 2005. http://www.nospank.net is the website that carried the article. Great child advocacy resource.

http://www.nospank.net/pinto.htm

EXPLOITATION IN THE NAME OF "SPECIALTY SCHOOLING"
What Counts as Sufficient Data? What are Psychologists to Do?
By Allison Pinto, Ph.D., Robert M. Friedman, Ph.D. and Monica Epstein, Ph.D.
Louis de la Parte Florida Mental Health Institute, University of South Florida, 2005

Correspondence concerning this article should be addressed to:

    Allison Pinto
    Department of Child and Family Studies
    Louis de la Parte Florida Mental Health Institute, MHC 2222
    University of South Florida
    13301 N. Bruce B. Downs Boulevard
    Tampa, Florida 33612

or

    http://observer.guardian.co.uk
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