SCHAFER AUTISM REPORT             "Healing Autism:

                             No Finer a Cause on the Planet"

 

________________________________________________________________

September 3, 2002             CALENDAR LISTING: EVENTS@doitnow.com

 

 

    EDUCATION

   * A Class Of Their Own -  Homeschooling

   * Letter: The Delaware Autism Program.

 

    PUBLIC HEALTH

   * Autism Rise Blamed On Environment

   * Can We Trust Charlie Tuna? FDA Negligence On Methylmercury

   * Disabled Children Sue Over Triple Diphtheria Vaccine

 

    CARE

   * 3 Risk Factors in Violent Behavior Among People With Severe

     Mental Illness

 

    TREATMENT

   * 'Drama' Treatment Under The Spotlight

 

    RESEARCH

   * Deviant Gene May Up West Nile Risk

   * Postpartum Live Virus Vaccination: Lessons From Veterinary Medicine

 

   * Readers' Posts (Return!)

 

 

EDUCATION

 

A Class Of Their Own -  Homeschooling

 

     [By Dani Garavelli.]

http://news.scotsman.com/opinion.cfm?id=971442002

 

      On Maradia Arouna’s desk stands an impressive model of the solar

system. It has a sun that lights up and detachable planets of varying sizes.

The seven-year-old’s walls are covered with posters of her multiplication

tables and the alphabet, while labels reading "le mur" and "la table" are

stuck on to the wall and table.

      Maradia is not the product of an expensive private school or aspiring

middle class parents who hope to hothouse her into academic brilliance. She

is the daughter of Alison Arouna, an unemployed single mother in East

Kilbride, who has opted to teach her daughter at home.

      Alison is one of a growing number of parents who have rejected the

concept of school in favour of a less structured, more child-oriented

approach to learning, where the three Rs are absorbed through everyday

activities such as baking, shopping and playing board games.

      Once home educators were dismissed as either hippies or pushy middle

class parents living vicariously through their offspring. This stereotype

wasn’t helped by high-profile cases such as that of maths prodigy Ruth

Lawrence, whose father Harry once said he didn’t want her to be distracted

by the "trivial conversations and pointless playing" of the school yard, or

Sufiah Yusof, who ran away from Oxford claiming she had been subjected to

years of abuse and isolation after her parents insisted on teaching her at

home.

      Despite the fact that it is more difficult to take your children out

of school in Scotland than in England (where 1% of the population are

home-educated) an increasing number of parents are doing just that.

      Although there is a long way to go before Scotland rivals the US,

where 5% of children are home-educated, an estimated 5,000 pupils, just over

half a per cent, north of the Border are now being taught in their houses.

Only 350 are registered with local authorities. The increase has been

accompanied by the rise of support organisations, with the Dundee-based

charity Schoolhouse fielding dozens of inquiries a day from all over the

country.

      Those who opt out of the school system come from across the

socio-economic spectrum and have a wide range of motives; some do it for

philosophical reasons, some because their child is being bullied or because

they are worried they will be exposed to drugs. Those from travelling

families, who find the system largely unworkable, and those whose children

have special needs, particularly those suffering from autism and dyslexia,

are also more likely to remove their children.

      Others such as Stuart McKay, a lay preacher in a fundamental

Pentecostal church, and his wife Diane, manager of a charity shop, are

motivated by faith.

      They decided to educate their children at home when their eldest son

Reuben, now 14, was about to go to school. He was followed by Joshua, 13,

Hannah, 11, Isaac, eight, six-year-old Aaron and four-year-old Tamar. Baby

Phoebe was born eight weeks ago, and will follow in their footsteps.

      "We do it partly because the Bible says it is the parents’ duty to

teach their children. But also when Reuben was about to start school 10

years ago, there was a big thing about bullying," says Diane, 39. "We wanted

to teach him ourselves. It worked so well, we carried on with the rest of

our children."

      Now their daily routine consists of morning assembly, followed by

classes and household chores.

      The internet has made it easier for parents without university degrees

or any background in teaching to access information. Some will follow the

national curriculum, setting up a classroom-style environment in their own

home; others prefer to follow their children’s questioning.

      Parents have a legal right to educate their children at home, but many

still encounter outright hostility from those who argue their children are

being denied the social aspect of schooling.

      In England, parents who want to withdraw their offspring from school

have to write to the headteacher, but in Scotland parents need the local

authority’s consent.

+ Article continues at:

http://news.scotsman.com/opinion.cfm?id=971442002

* * *

 

LETTER

 

The Delaware Autism Program.

 

      There has been a lot of good press given lately to the Delaware Autism

Program.  The DAP does help many families to a certain extent.  There are

sincere, well-meaning teachers, para-professionals, and speech therapists at

the DAP. But before a family in another state reads all of this good press

and uproots their family, leaves their relatives and friends, and sells

their house, commendably doing this to help their autistic child, they need

to know that there is another side to the story. DAP is not OZ. It is not

the place "over the rainbow." Some parents feel that it amounts to little

more than a $50,000 per year child care service, not reaching their child,

not giving their child language, not helping their child attain nearly

his/her potential.  And although many parents may feel that it has helped

their child, they may not have been made aware that their child was capable

of so much more.  So much more than the limited – some might say

over-stressed – resources of the DAP are able to provide their child.  Just

because a program is better than what is available in some other states,

does not mean that that program is excellent or what can best benefit a

particular child.

      There are parents who have moved to Delaware and then moved back out

of Delaware because the DAP could not adequately help their child.  The

Rzucidlo family moved to Delaware so that their non-verbal autistic 4-year

old son, Ben, could attend the DAP.  Says his mother, Susan, "We

specifically moved to have Ben in a language-intensive program, our hope was

that Ben would gain speech. DAP administration chose only to use PECS, even

though there were other scientifically proven methods in existence for

teaching language.  Their "one size fits all" approach failed to meet IDEA

regulations."  Ben was in the DAP for almost 2 years.  The Rzucidlos

withdrew Ben from the DAP because, in his parents' opinion,  "It seemed that

the best that the staff was hoping for with Ben, was to make him a good

group home resident.

      It was too early in Ben's life to decide what level he would be able

to function at.  There was also a lack of 1:1 services, a lack of

accountability of DAP to the parent, to the state, and to IDEA."  The

Rzucidlos moved out of Delaware to gain better services for Ben elsewhere.

Ben, who is making steady progress, is currently verbal and reads and

writes, things his parents say they are sure would not have happened had he

remained in the DAP.

      In addition to parents within Delaware who have either withdrawn their

children from the DAP, or who have left the state altogether, there are

parents who have recently received the diagnosis who have decided that

spending money out-of-pocket to run a home program would be better for their

child than opting for the state-funded DAP.

      Although there are other states that provide funding for home

programs, no funding for services for home programs currently exists in

Delaware.  Home programs have been proven to help many children.  Many home

programs even use methodology that DAP staff says is used there.  Yet

parents have been discouraged from doing this at home, where it can be

delivered in a much more intensive, effective, highly individualized manner.

Home programs can provide the vital ingredients of: intensive 1:1

interaction; intensive repetition for skill acquisition; highly

individualized educational and behavioral strategies; and typical peer

modeling of speech, communication, social, imitative, and play skills.  And

home programs can do this at a lower cost.

      The Speaker of the House of Delaware has co-sponsored a House

Resolution establishing a committee to "examine the methods used in the

teaching of autistic children within Delaware’s public schools."  Part of

the work of the committee will be to "examine the feasibility of offering

alternative programs as additions to the current treatment and education

practices of Autism in the State of Delaware."  It is hoped that this will

result in additional alternatives for autistic children in Delaware who can

be better helped to reach their potential in a program other than the DAP.

      -Teri Small, Wilmington, Delaware

* * *

 

PUBLIC HEALTH

 

Autism Rise Blamed On Environment

 

      [This was reported here last week first when the filming crews came to

California. Here is a BBC report on the subject.  By Richard Watson BBC

Newsnight.]

http://news.bbc.co.uk/1/hi/programmes/newsnight/2224126.stm

 

      Autism, the devastating childhood learning disorder now thought to

affect one in 200 children in Britain, could be triggered by something in

the environment.

      That is the ground-breaking conclusion being reached by some of the

world's experts working in California.

      More than 3000 cases a year are diagnosed in California - a ten fold

increase on the seventies.

      The numbers are continuing to rise, with nine children every day found

to have the condition.

      It is widely believed that autism has a strong genetic component.

      But genetic diseases cannot lead to an epidemic-like rise in cases

unless outside factors are at play.

      Better diagnosis

Better diagnosis is thought to account for some of the rise, with more

informed parents increasingly referring their children to specialists.

      But many scientists in California are beginning to think the

unthinkable - that an environmental factor is partly to blame.

      Dr Ron Huff, California's most senior psychologist, who is in charge

of the State's $1.8 billion autism budget, told Newsnight that he now

believes that an as yet unidentified environmental factor is partly to

blame.

      This would be his "worst fear" because if an environmental factor is

eventually found it is likely that it would take decades to reduce the

effect and bring the numbers of cases under control.

      "If it is determined that an environmental link is there, we're going

to see a lot more of this before we can correct that," he said.

      To account for the difference between the 200 - 300 cases a year in

the 70s and the 3000 today you would have to argue that in 2700 cases

clinicians were making diagnoses which would have been missed before.

      Dr Huff believes that the rise in autism cannot be put solely down to

changing diagnostic practise.

      He said: "I think we would be foolish to attribute that rise simply to

one single factor, I think it's a combination of factors."

      It also seems highly unlikely given that the Californian statistics

only count the more serious so called Level One cases of autistic disorder.

      The symptoms of Level One cases, such as severely impaired speech,

repetitive self-stimulatory behaviour, lack of eye contact and socialisation

skills, are usually hard to miss.

 

 

 

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* * *

 

Can We Trust Charlie Tuna? FDA Negligence On Methylmercury

 

      [By Jae Hong Lee, MD, and Diana Zuckerman, Ph.D. from Redflagsweekly.]

http://www.redflagsweekly.com/features/2002_august26_2.html

 

      Here's a corporate cover-up you probably haven't heard about yet:

Government scientists learn that a widely-used product can potentially harm

children. Industry executives persuade government officials that warnings

are unnecessary, and could create a panic. The public is not told.

      Don't panic, but read on if you know young children or pregnant women

who eat a lot of tuna fish.

      The risk that may be lurking in that tasty tuna salad sandwich is

caused by mercury, a type of air pollution that is spewed by power plants.

When mercury gets into our streams, rivers, lakes, and oceans, it becomes

methylmercury, a toxin that is consumed by fish. When those fish are eaten

by children or pregnant women or nursing mothers, they can harm the

developing nervous system of children, causing learning disabilities or

other problems.

      Pregnant mothers can expose their unborn child to mercury by eating

contaminated fish, including canned tuna. Nursing women can pass

methylmercury to their newborns through breast milk. Young children who eat

a lot of tuna can also be harmed.

      Last year, the FDA issued a warning urging pregnant women, nursing

mothers, and young children to avoid eating shark, swordfish, tilefish (also

called golden bass or golden snapper), and king mackerel because they

contained dangerously high levels of methylmercury. The FDA "advisory" also

warned pregnant women and nursing mothers not to consume more than 12 ounces

of any kind of fish per week. Unfortunately, the FDA did almost nothing to

make sure that most Americans were aware of these warnings. Even worse, the

FDA ignored the advice of their own scientists and of consumer groups to

warn the public about the moderate rates of methylmercury in fresh tuna and

canned tuna. Warning the public about mercury in fish without mentioning the

potential risks of the most popular fish in America would be like warning

teens about the risk of drunk driving without mentioning beer.

      A few days ago, at a meeting that received little press attention, the

FDA asked their Advisory Committee what warnings the public should be given

about mercury in fish. Several consumer groups, including ours, urged the

FDA to tell the public what they knew about the possible dangers of tuna. We

told them to put the warnings where they would do some good--on restaurant

menus and on the packages of fish, including canned fish, which people buy

in the store or fish market.

      Advisory Committee members agreed with the consumers on several key

points. They urged the FDA to do a better job of warning the public about

the risks of mercury in fish, including tuna. They also urged the FDA to

measure the levels of mercury in canned tuna and other fish, to find out how

mercury levels may have increased or decreased in different parts of the

country in the last few years.

      Will the FDA listen?

According to internal FDA documents, previous FDA methylmercury warnings

were watered down after representatives of the tuna industry met privately

with top FDA officials at least 3 times. Participating in some of these

meetings were all the big fish in the tuna industry -- StarKist, Bumble Bee,

Chicken of the Sea, and the U.S. Tuna Foundation. Sitting across the table

were some of the highest officials in the FDA.

      Apparently, these industry executives were more persuasive than the

National Academy of Sciences, which estimates that every year 60,000

children are born at risk for neurological problems due to methylmercury

exposure in the womb. These problems could include learning disabilities,

such as Attention Deficit and Hyperactivity Disorder.

      Governors and other State officials are also aware of mercury

contamination in fish. At least ten states mention tuna in their warnings

about methylmercury, and 41 states have issued over 2,000 fishing advisories

that restrict or ban the consumption of freshly-caught fish because of these

concerns. The number of advisories has more than doubled in the last decade.

      The FDA now has another chance to do its job to protect consumers from

unsafe food. The FDA's Advisory Committee has made it clear that the FDA

should do more to measure the levels of methylmercury in all fish, including

tuna, and to use that information to provide warnings that consumers

actually hear about. If the FDA wants to hold any additional meetings with

the fish industry, those meetings should be public, with consumers at the

same table and reporters invited to watch. Had the FDA done that last time,

women and children would be better informed about the possible risks of tuna

and other fish, and the FDA's wishy-washy warnings wouldn't seem so...fishy.

      Dr. Jae Hong Lee is the Senior Medical Policy Analyst and Dr. Diana

Zuckerman is the president of the National Center for Policy Research (CPR)

for Women & Families, a nonprofit, nonpartisan organization. They can be

reached at info@center4policy.org .

      For more information about why the FDA needs to hear from consumers,

see

http://www.center4policy.org and http://www.breastimplantinfo.org

* * *

 

Disabled Children Sue Over Triple Diphtheria Vaccine

 

      [By Rajeev Syal in the Telegraph, UK.]

http://www.telegraph.co.uk/news/main.jhtml?xml=%2Fnews%2F2002%2F09%2F01%2Fnmmr01.xml&sSheet=%2Fnews%2F2002%2F09%2F01%2Fixhome.html   

 

      The manufacturer of the controversial MMR vaccine is being sued over

claims that another of its triple inoculations has caused cerebral palsy and

autism in hundreds of British children.

      A group of 120 disabled children have joined a class action, which

claims that their illnesses were caused by the three-in-one diphtheria,

pertussis and tetanus (DPT) vaccine made by Glaxo Wellcome and the Wellcome

Foundation.

      Glaxo Wellcome is now part of GlaxoSmithKline, the company which is

facing a separate claim by several thousand children whose autism was

allegedly triggered by the company's measles, mumps and rubella (MMR)

vaccine.

      The Government has previously admitted that the DPT vaccine can cause

problems in some children and paid limited compensation to victims under the

1979 Vaccine Damages Payments Act.

      Debbie Murphy of Alexander Harris, a Manchester-based solicitors firm

that is leading the class action, said: "We are anxious to prove that a link

does exist and we believe that there is enough evidence to mount a case

against the manufacturers."

      One of the children allegedly harmed by the DPT vaccine is Karl

Radunovic, 8, from Wakefield, West Yorkshire, who is suing through his

mother, Elizabeth.

      Karl was injected with the DPT vaccine when only a few weeks old and

immediately reacted badly. Doctors still believed that he was well, but Mrs

Radunovic was convinced that there had been a fundamental change in his

behaviour.

      "The doctors thought I had a lazy child, but I knew that this was not

how a baby acts," she said. "I knew that he was ill. He was like a rag doll,

his head lolling to one side."

      At the age of 18 months, Karl was diagnosed with cerebral palsy. He

now needs to be monitored 24 hours a day.

      "We want the courts to get to the bottom of all this, and prove that

the medical companies should bear some responsibility," she said.

      The DPT vaccine is usually given to babies, normally at two, three and

four months of age. It consists of dead bacteria and inactive toxins which

stimulate a baby's immune system to fight the diseases.

      The element of the vaccine known as pertussis, or more commonly

whooping cough, has previously been linked with a rise in childhood ailments

including asthma and cerebral palsy.

      At present, the legal action has been granted legal aid, subject to

final approval being given by the Legal Services Commission. A Glaxo

SmithKline spokesman declined to comment on any impending litigation.

* * *

 

CARE

 

3 Risk Factors in Violent Behavior Among People With Severe Mental Illness

 

http://dukemednews.org/news/article.php?id=5806

 

      People with severe mental illnesses are highly unlikely to become

violent toward others unless they have additional risk factors combined with

their psychiatric disorder, according to a new study led by researchers at

Duke University Medical Center.

      Among people with severe mental illness, a combination of three risk

factors -- having been a victim of violence during childhood, living in a

neighborhood where violence is common, and having a substance abuse

problem -- can increase the likelihood of violent behavior more than

tenfold, the researchers found. Without any of these risk factors, those

with severe mental illness were no more likely to engage in violent

behaviors than people in the general population without a psychiatric

disorder.

      "Acts of violence by people with mental illness are rare," said

Jeffrey Swanson, Ph.D., associate professor of psychiatry and behavioral

sciences, a sociologist at Duke and lead author of the study. "While the

illness certainly plays a role, the risk factors we examined compound the

illness in a way that makes violence more probable. Those risk factors

should be a large part of the focus of treatment and services for persons

with mental illness and a history of violence."

      Swanson noted, "violent crimes committed by psychiatric patients

become big headlines and reinforce the social stigma and rejection felt by

many individuals who suffer from mental illness. But our findings suggest

that serious violence is the rare exception among all people with

psychiatric disorders. The public perception that people who are mentally

ill are typically violent is unfounded."

      The study appears in the September 2002 issue of the American Journal

of Public Health and was funded by the National Institute of Mental Health

(NIMH).

      The researchers conducted confidential interviews with 802 adults from

North Carolina, New Hampshire, Maryland and Connecticut who had been treated

for severe psychiatric conditions such as schizophrenia, bipolar disorder or

major depression.

      Participants in this observational study were asked whether they had

committed any acts of violence toward others during the previous year that

involved the use of weapons or caused physical injury to another person.

Overall, the prevalence of violence was 13 percent. Among participants who

did not have any of the three risk factors cited above, less than 2 percent

reported acting violently. Those who had a combination of two of the risk

factors had nearly a 10 percent likelihood of violent behavior during a

one-year period. Adding a third risk factor tripled the likelihood of

violent behavior to about 30 percent.

      "The prevalence and pattern of violent behavior found in this study

supports previous research findings on the link between violence and mental

illness," said Swanson. "A great deal of the violence in our mentally-ill

participants appears to be attributable to factors outside of their illness.

Those acts of violence are quite uncommon overall, and there are typically a

number of other factors involved, like living in an impoverished high-crime

neighborhood. However, when violence does occur, it requires that a

disproportionate amount of public resources be spent on treatment in

institutional settings -- which are the most restrictive and also the most

expensive."

      Swanson said many of the tragedies caused by violent behavior of

people with mental illness are preventable with the appropriate resources.

Yet many individuals with serious and disabling psychiatric disorders are

not receiving the treatment and support that might enable them to live

productive lives in the community, especially as states restrict their

services in response to budget pressures.

      "If we’re worried about violence among people with serious mental

illness, we need to pay far more attention to finding safe housing in decent

neighborhoods, mitigating the effects of physical and sexual victimization,

and aggressively treating substance-abuse issues," said Marvin Swartz, M.D.,

professor of psychiatry at Duke and an author on the study.

* * *

 

TREATMENT

 

'Drama' Treatment Under The Spotlight

 

       [By Ciaran O'Neill in the Belfast Telegraph. Note that no research

regarding efficacy is cited in this article.]

http://www.headinout.co.uk/arts/story.jsp?story=328494

 

      A major conference on an innovative form of alternative medical

treatment will be held in Londonderry next month.

      The conference at the Magee campus of the University of Ulster, from

September 20-22, will focus on dramatheraphy, which uses drama and theatre

processes to help people suffering from a range of conditions.

      Among the conditions which dramatherapy is believed to help treat are

clinical depression, mental illness, autism, addictions, learning

difficulties and post-traumatic stress.

      According to supporters of the treatment, it helps people change their

behaviour and thought processes, increasing self-confidence and

self-awareness.

      Dr Tom Maguire, one of the organisers of next month's conference,

today said he believed dramatherapy should be recognised as a legitimate

clinical treatment in Northern Ireland.

      "Dramatherapy is a treatment that is used widely throughout the rest

of the UK and its merits are widely recognised and acknowledged.

      "I would encourage its use within the mental health sector here in

Northern Ireland and I would like to see it recognised as a legitimate

method of treatment.

      "There is suspicion of alternative methods of treating disorders, but

we must make moves to eradicate this perception and catch up with the rest

of the UK," he added.

      Among the speakers will be South American Direct of Community and

Therapeutic Theatre, Augusto Boal.

      The event will be co-hosted by the University of Ulster, Dramatherapy

Northern Ireland and The British Association of Dramatherapists.

      The University of Ulster is set to launch a new four-year Arts Therapy

course, which will provide the first opportunity in Ireland to study

dramatherapy.

* * *

 

RESEARCH

 

Deviant Gene May Up West Nile Risk

 

      [Frank E. Stepnowski explains why he is sending to an autism

newsletter an article about West Nile Virus. "I want to make the point that

even though some researchers believe that there is a correlation between the

rate of autism and some gene variants, that does not make autism a genetic

disease, in the sense that the genes cause autism (other than the few cases

of autism caused by fragile X syndrome.)

      The genes may merely make one person more susceptible to environmental

damage, triggers or autoimmune responses.  West Nile Virus is not a genetic

disease, but there may be a correlation with certain genes.  The point is

often confused by people in the media." By PAUL RECER for the AP.]

http://story.news.yahoo.com/news?tmpl=story&u=/ap/20020820/ap_on_he_me/west_

nile_risks_2 <- - address ends here.

 

      A genetic study in mice suggests that a flawed gene may be the reason

the West Nile virus causes a severe, life-threatening illness in some while

giving others only a relatively mild infection, according to French

researchers.

      For most people, West Nile causes only flu-like symptoms. But for some

patients, particularly the young and the elderly, West Nile can be much more

serious, causing a swelling of the brain that can be lethal.

      Pasteur Institute scientists, searching for genes that might affect

the progression of West Nile infections, tested a series of laboratory mouse

strains to see if there is a genetic type that is more likely to die after

being exposed to the virus.

      They found that animals in the mouse strain called BALB/c all died

within 13 days when injected with the West Nile virus. When these animals

were mated with other mouse strains, some of the offspring died from the

virus, while others were little affected.

      By analyzing the genes of both the BALB/c mice and the mixed strains

with a high rate of West Nile deaths, the researchers isolated a specific

gene variation that increased the susceptibility to the virus, the

researchers report. They called the variation the West Nile gene.

+ Article continues:

http://story.news.yahoo.com/news?tmpl=story&u=/ap/20020820/ap_on_he_me/west_nile_risks_2  

 

 

 

 

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* * *

 

Postpartum Live Virus Vaccination: Lessons From Veterinary Medicine

 

      [From Medical Hypotheses – Abstract.]

www.harcourt-international.com/journals/mehy/previous.cfm?art=mehy.2002.0168

F. Edward Yazbak, Catherine J.M. Diodati

p 280-282, Volume 59, Number 3, September 2002

 

      Pregnant rubella-susceptible women are often revaccinated during the

postpartum period with the Measles, Mumps, and Rubella vaccine (MMR).

      It is known that the rubella virus from vaccine is secreted in breast

milk and persists in the nose and throat for up to 28 days but it is not

known whether the measles and mumps viruses are similarly secreted.

      It is probable the measles virus from vaccine is.

      © 2002 Elsevier Science Ltd

* * *

 

Readers' Posts (Return!)

 

First Baptist Church in downtown Modesto, California has "the bridges"

ministry run by a wonderful woman who has experience in special ed.  They

provide opportunities for the children to be "mainstreamed" with their peers

in Sunday school with a trained one-on-one volunteer from the church or the

kids can stay in the bridges classroom that is equipped with sensory

integration equipment, computers, videos and lots of interaction with

volunteers!  They rock! - Tell them "Dan the Man" was bragging!

                        ******

I am looking for potty training tips for my non-verbal (soon-to-be) 6 year

old. He knows exactly what he's supposed to do, but holds it till the

one-second we are not looking, and does his business on the floor. Can

anyone suggest how I can find info on how to remedy this situation for a

non-verbal child?  I even have a doll for a visual aide, but it doesn't seem

to be doing the trick. Nanc