Gainesville Music Therapy - Special Needs Research/News: 11/01/2005

Special Needs Research and News

Gainesville Music Therapy parents receive frequent e-mails with the articles of interest to the special needs community, including research on Autism, Down Syndrome, ADHD, etc.; conferences and trainings being offered in the local area; and information on music therapy practice. If you would like to receive these articles, and/or our monthly newsletter by e-mail, please e-mail us to join the mailing list.

Saturday, November 26, 2005

Music therapist hits all the right notes

By Frank Schultz, Janesville Gazette
Janesville, WI

When Kennedy School fifth-graders present their holiday music program next month, Cassie Wenger will be participating along with the rest of her classmates.

Cassie has cerebral palsy. She doesn't talk or sing more than a word or two. She can't stand, walk or crawl. But the 12-year-old can move her hands, so that's how music therapist Jolene Nelson gets Cassie involved.

Cassie can ring chimes in time to the music, and she can push a button that activates a computer screen.

During the holiday show's Hanukkah song, a picture of the nine-branched candlestick will be projected on a screen. Cassie will press the button to make "flames" appear over each candle as other children sing.

It's nothing new to Cassie. She was in last year's production as well.

"I was crying because she had Cassie playing bells to the beat," said Cassie's mother, Georgia Wenger. "She was really integrated into everything, and it was just beautiful."

Wenger said her daughter has been in schools where everyone in her class had disabilities. But she finds Kennedy's approach best.

"Now that we've mainstreamed her with the regular children, she's doing much better," Wenger said.

Nelson, who has been the school district's only music therapist for more than 10 years, helps about 40 children with a variety of disabilities and ages throughout the district. For some, she makes occasional visits to help the classroom teachers get kids with disabilities involved in their classes. With others, she provides regular therapy in groups or one-on-one.

"It's from Barney to Back Street Boys to Black Sabbath," Nelson said of the variety of music she might employ, depending on the students' tastes.

She stays away from explicit lyrics, she said when asked about Black Sabbath.

Nelson is part of a team that helps kids with disabilities in every aspect of their educations. Special-education teachers, aides, regular classroom teachers and occupational and physical therapists combine their specialties with the goal of integrating students into their schools to the greatest extent possible. Nelson's specialty, however, is one that not every school district enjoys.

Nelson uses a variety of techniques to get the kids involved in music, from a low-tech maraca to electronic devices. She uses songs to teach academics, such as numbers or ABCs, and behavior, such as how to take turns or respect others.

She recently presented her ideas about iPods at a conference. The electronic devices allow her to carry a library's worth of music in one tiny package, categorized for different uses: counting songs, Thanksgiving songs, etc.

One of the most interesting devices is the floor of her tiny therapy room, which was constructed when the rest of Kennedy School was built in 1999.

The 11-by-9-foot room's floor is made of wood and suspended so that music played through a speaker placed on the floor will make the floor vibrate.

The music doesn't need to be loud. A gentle song at low volume will bring the beat tingling to the feet, even through shoes.

For students with impaired hearing, the floor is a window into the world of music.

"They learn about how music can be used to relax and how you can use music in your life," Nelson said of her therapy sessions.

Nelson also has a light board whose colored lights go on and off, depending on the beat and pitch of the music.

Students with autism or more rare conditions, such as that of 9-year-old Sara McGrath, can benefit. Sara has Rett Syndrome. She doesn't speak, can't walk, but her eyes light up when the music is on.

Sara is given a switch that will activate music and the light board.

"It just seems to keep her attention, motivates her. It's just wonderful," said Sara's mother, Kathy McGrath.

The usually quiet, expressionless Sara moved her body to a Halloween song during a recent session.

Children with Rett Syndrome usually love music but respond very little to plain speech. They typically spend a lot of time wringing their hands or holding their hands to their faces. But when the CD player automatically shuts off in Nelson's class, Sara knows she must move her hands to a button to restart the music.

"She's so motivated to have more music that she'll let her hands down," Nelson said.

But it's no easy thing. Nelson speaks to Sara softly as she tries: "Sometimes it takes a long time to get that hand to do what you want it to do, doesn't it, Sara?"

While Sara can't speak, she can communicate. Nelson looks at Sara's eyes for clues.

"Yeah, you tell me all sorts of things with your eyes," Nelson said during the therapy session. "You tell me what you want to do."

McGrath said music therapy is recommended for Rett Syndrome. She knows of parents who have struggled to get music therapy for their kids.

"And here it was, just offered to us. I didn't have to go look for it," McGrath said, marveling at her good fortune.

Good fortune indeed. The country has about 3,500 music therapists. Wisconsin has 200. These professionals work in medical settings, nursing homes as well as schools, so they're spread thin.

Barb Hilliker, who coordinates the school district's special education programs, said that if Nelson leaves or retires, she expects it will be difficult to find a replacement.

Nelson is not only a special-education teacher. She also plays instruments. She was a clarinet major in college and frequently uses the guitar and keyboards at school.

"I sing and play four to five hours a day," she said.

But music therapy in a school is not just about music.

Other teachers go to Nelson for help to teach students who have learning difficulties. Sometimes, a song that repeats the lesson is all it takes.

Some kids improve their ability to walk through "rhythmic auditory stimulation," learning a walking rhythm by listening to music. Others learn to form an "S" or "L" sound correctly by singing songs with lots of those sounds.

Nelson said students learn more quickly than they would without music, and their memory of what they learned is more permanent.

People have known for centuries about music's positive effects, but Nelson said science is only beginning to understand how music does what it does.

Cassie's mother, Georgia Wenger, said music is the way to Cassie's heart, so she's fortunate to have a music therapist available at school.

"It calms her down," Wenger said. "A lot of times the rest of the world is too fast and too stressful for her to handle, and music is the way for her to escape from the regular stuff. I mean, it works for you and me, too."

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Wednesday, November 23, 2005

The Problem With an Almost-Perfect Genetic World

By Amy Harmon, New York Times

Mia Peterson is not a fan of tests. Because she has Down syndrome, she says, she cannot always think as fast as she would like to and tests end up making her feel judged. A recent driving test, for instance, ended in frustration.

Ms. Peterson, 31, the chief of self-advocacy for the National Down Syndrome Society, prefers public speaking and travel. And her test aversion extends to the latest one designed to detect Down in a fetus. "I don't want to think like we're being judged against," Ms. Peterson said. "Not meeting their expectations."

Heralded in the Nov. 10 issue of The New England Journal of Medicine, the new prenatal test provides earlier, more reliable results for all women than the current test, which is routinely offered to only older women who are at higher risk. But for people with Down syndrome and the cluster of other conditions subject to prenatal screening, the new test comes with a certain chill.

Because such tests often lead to abortions, people with conditions from mental disability to cystic fibrosis may find their numbers dwindling. As a result, some fear, their lives may become harder just as they are winning the fight for greater inclusion.

"We're trying to make a place for ourselves in society at a time when science is trying to remove at least some of us," said Andrew Imparato, president of the American Association of People With Disabilities, who suffers from bipolar disorder. "For me, it's very scary."

Some bioethicists envision a dystopia where parents who choose to forgo genetic testing are shunned, or their children are denied insurance. Parents and people with disabilities fear they may simply be more lonely. And less money may be devoted to cures and education.

The Cystic Fibrosis Foundation, for instance, does not endorse prenatal testing, which the American College of Obstetricians and Gynecologists recommends offering during pregnancy.

"If you can terminate pregnancies with a condition, who is going to put research dollars into it?" said Nancy Press, a professor of medical anthropology at Oregon Health and Science University.

Indeed, the $15 million spent on the new test for Down by the National Institute of Child Health and Human Development might have gone instead toward much-needed research on the biochemistry of people living with the condition, said Michael Bérubé, co-director of the disabilities studies program at Pennsylvania State University.

Mr. Bérubé, whose 14-year-old son has Down syndrome, worries that if fewer children are born with the condition, hard-won advances like including them in mainstream schools may lose support. "The more people who think the condition is grounds for termination of a pregnancy, the more likely it will be that you'll wind up with a society that doesn't welcome those people once they're here," he said. "It turns into a vicious cycle."

Anthony Shriver, founder of Best Buddies, a nonprofit organization that helps people with intellectual disabilities form friendships, said smaller numbers will mean even greater social isolation for the people his group serves.

"Loneliness is one of the most significant challenges they face," Mr. Shriver said. "And it would only become more acute as they became a smaller segment of the population."

Beyond the impact on the disabled, disabilities activists say, the implications of prenatal testing for diversity and democracy require more attention than they have so far received.

Lisa Hedley, whose 10-year-old daughter has dwarfism, said the condition is usually not detected prenatally. It is so rare that it has traditionally not been considered worth the expense of the genetic test. Soon, though, pregnant women may be offered a gene-chip technology that can perform hundreds of tests at once for a few hundred dollars.

"It's so complicated," said Ms. Hedley, president of the Children of Difference Foundation. "Would I choose to have my child have a disability? Oh my goodness, no. It's difficult for her. It's difficult for everyone. But difference is what makes the world go round."

Supporters of abortion are especially wary of wading into a discussion over the ethics of prenatal testing, lest they be seen as playing into the opposing side in the fraught national debate over abortion rights. But advocates for people with disabilities are troubled by how much faster the science of prenatal testing is advancing than the public discussion of how it ought to be used.

If no child is ever born again with the fatal childhood disease Tay-Sachs, many might see that as a medical triumph. But what about other conditions, including deafness, which some do not consider to be a disability, and Huntington's Disease, an adult-onset neurological disorder?

Among the difficult choices facing prospective parents in coming years, genetics researchers say, will be the ability to predict the degree of severity in chromosomal abnormalities like Down syndrome, which can cause mild to moderate retardation.

"Where do you draw the line?" said Mark A. Rothstein, director of the Bioethics Institute at the University of Louisville School of Medicine. "On the one hand we have to view this as a positive in terms of preventing disability and illness. But at what point are we engaging in eugenics and not accepting the normal diversity within a population?"

Skip to next paragraphAbortion, Mr. Rothstein and others fear, could become a kind of "poor man's gene therapy," if cost-conscious health insurance companies see it as less expensive than treating a disabled child. Others argue that prenatal testing will be limited to those who can afford it, leaving the poor to grapple with genetic disability and disease.

Of course, as more conditions are diagnosed in utero, many parents may simply decline testing, or use the information to prepare themselves. But studies have shown that women are considerably more likely to terminate their pregnancies if they know of fetal anomalies.

One study of 53,000 women's choices, published in Obstetrics & Gynecology in 2002, found that the termination rate ranged from about 1 percent for conditions that were classified as having no impact on the quality of life, to 50 percent for those considered to have a serious impact.

Women were far more likely to choose abortions for disabilities that have a high probability of affecting cognitive functioning. For conditions that have little or no impact on the quality of life but might require medical or surgical therapy, the abortion rate was 16 percent, but doubled for those likely to cause mental dysfunction.

As for Down syndrome, doctors estimate that about 80 percent of women who get positive test results choose abortion.

Still, some who work with Down syndrome children don't believe the future is that grim. Allen C. Crocker, director of the Down syndrome program at Children's Hospital Boston, believes that number of women who choose to continue their pregnancies will go up in the coming years.

Even as genetic tests appear to have lowered the number of Down syndrome births, he said, social conditions for people with the conditions have improved markedly.

"We're in the midst of a gentle social revolution," said Dr. Crocker, and, he believes, it may just outpace the scientific one.

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Monday, November 21, 2005

Asperger Foundation International study finds significant gaps in adult social services available throughout U.S.

Asperger Foundation International has compiled data about where in the U.S. adults with each of the diagnoses on the Autism Spectrum - classic Autism, Asperger Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified - are eligible for government services.

Because each of the 50 states (and DC) have a great deal of latitude in determining which conditions qualify for services, AspFI has interviewed administrators at the potentially relevant agencies in each state (in most cases, a Developmental Disabilities division, a Mental Health division, and a Vocational Rehabilitation division) as well as searched the agencies' own public documents on their policies.

The findings run the gamut from states that do not recognize anyone with an IQ over 70 as having a developmental disability - despite the impact social and organization skills challenges can have on economic self-sufficiency for the so-called "higher functioning" individuals on the Spectrum - and do not consider Autism Spectrum disorders to be mental illnesses either, to states with comparatively broader views of these classifications. Overall, there are far too many places in the country that are not addressing the needs of the full range of the Autism Spectrum.

The complete results of this research are available on AspFI's website - www.aspfi.org.

This study is the first part of a larger study investigating adult services for individuals throughout the Autism spectrum. Next, AspFI will be interviewing affected individuals and their family members from a select number of representative states who have applied for services about their experiences doing so.

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Thimerosal and Autism

Columbia Journalism Review- November/December 2005
Drug Test
By Daniel Schulman

On May 18, 2004, the Institute of Medicine, a branch of the prestigious National Academies, delivered its eighth and final report on vaccine safety, seeking to end a scientific controversy that had built to a slow boil over the previous five years: whether a mercury-containing vaccine preservative called thimerosal was to blame for an alarming spike in autism cases among a generation of children. After three years of reviewing this and other immunization safety questions on behalf of the Centers for Disease Control and Prevention, the institute's fourteen-member panel rejected the thimerosal link, and, in a powerful policy statement, recommended that research funding in this area be shifted toward other, more promising lines of inquiry. Under headlines such as this one from The Washington Post, EXPERTS FIND NO VACCINE-AUTISM LINK; PANEL SAYS MORE RESEARCH ON POSSIBLE CONNECTION MAY NOT BE WORTHWHILE, the press dutifully reported the IOM's conclusions, perhaps as eager to lay the question to rest as the IOM panel itself.

For a time it appeared the controversy over thimerosal would end there. It didn’t. Over the past seven months, it has gained traction again, leaving journalists in an awkward position. The thimerosal question -- scientifically, politically, and emotionally complex -- is proving to be a test for journalism, and the successes and failures are evident in the coverage.

David Kirby, a Brooklyn-based writer, jumpstarted the debate in April with the publication of his book, Evidence of Harm, which lays out a compelling case for a connection between thimerosal and autism. Then, in June, Robert Kennedy Jr. followed with a more pointed -- some say over-the-top -- article, co-published by Rolling Stone and Salon.com, that alleges what amounts to a government cover-up of the harmful properties of thimerosal in the interest of buffering vaccine manufacturers from a cascade of lawsuits and maintaining public confidence in the national immunization program.

Still, the bulk of the scientific establishment denies the autism link, citing the conclusions of the IOM panel, and views believers as crackpots, conspiracy theorists, or zealots -- a perspective many medical experts barely conceal in conversations with reporters. In an interview with Myron Levin of the Los Angeles Times after the publication of the IOM report, Dr. Stephen Cochi, the head of the CDC's national immunization program, dismissed supporters of the thimerosal theory as "junk scientists and charlatans." If so, then such universities as Harvard and Columbia, among others, employ charlatans -- scientists who believe that a link between mercury exposure and autism is plausible. Even so, the perception that only distraught, activist parents and disreputable scientists back the thimerosal theory has seeped into the collective consciousness of the news media, which, in general, have been reluctant to cover the controversy.

Read more ...

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Special Education Ruling's Effects Unclear

It may take years to assess fully the impact of the Supreme Court ruling on Monday on disputes between school districts and the parents of special education students, experts across the country have said.

The decision gives parents who disagree with the individualized education plans the burden of proving that the plans are inadequate.

Advocates for disabled children greeted the ruling with dismay. In some states, they acknowledge, it will have virtually no effect. In others, the effects remain to be seen. Some advocates are looking for ways around the ruling, like seeking state or federal laws to shift the burden of proof to school districts.

"This is something where it would be very hard to predict exactly what's going to happen," said Arlene Mayerson, directing lawyer of the Disability Rights Education and Defense Fund. "Obviously it's bad news to parents. But how bad the news is we'll have to wait and see."

Ms. Mayerson said she believed that at the very least some parents would be deterred from pursuing complaints against school districts. She added that districts, knowing that parents have to assemble convincing cases, might be less likely to compromise beforehand.

"It's like one more message to the parents that they're up against formidable odds," she said.

Essentially, states fall into three categories on disputes over individualized education plans. One group includes Texas, Virginia and Maryland, where the Supreme Court upheld what has been in practice. The second group includes New Jersey and New York, where the burden of proof shifts to the parents. In the third group, states including Alabama and Connecticut have regulations or statutes that place the burden of proof on school districts.

Peter W. D. Wright, a lawyer in Virginia who has represented more than 1,000 parents of special education children, cautioned against gloomy predictions. Mr. Wright said that when disputes did proceed to trial "who has the burden of proof in my cases is really a nonissue."

But, he added, "If the school district had had the burden of proof in the very beginning in Virginia, there is a definite chance I think that more issues would have been resolved by parents and schools, without parents even having to consult with me in the first place."

In Connecticut, because of a regulation placing the burden of proof on school districts, officials say they expect virtually no changes because of the Supreme Court ruling.

"We think that as of right now, unless the federal government tells us otherwise, we can continue to do as we have done with our system," Attorney General Richard Blumenthal of Connecticut said. "We believe that our regulation embodies a valid state policy that articulates our belief that school boards are in a better position to muster the facts and expertise in any contest with ordinary parents."

In New York, Assemblyman Steven Sanders, the Manhattan Democrat who is chairman of the Assembly Education Committee, said he intended to propose such a law.

"I definitely think that in light of this court decision any state that is concerned about fairness for parents in this process will have to fill this vacuum and enact some kind of state law or regulation that would restore to parents their rights," he said.

In New York City, the Education Department praised the Supreme Court decision. But Elisa Hyman, deputy director of Advocates for Children, a group that frequently works on special education cases, said she believed that poor city parents would suffer.

"Many of the parents of kids who get special education services in New York City find the system extremely confusing to navigate," she said. "They certainly are not going to be able to understand what they need to prove to meet their burden."

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Tuesday, November 15, 2005

Say it loud, autistic and proud

For many, it's a condition which evokes pity and even fear. But a campaigning group of activists is determined to change the way we view autism by dealing not with its many downsides, but by focusing on its positives.

Read more ...

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Wednesday, November 02, 2005

Normal noise often painful to autistic kids, study finds

Autistic and some gifted children are among the most severely affected by noise, a study in early education by Massey University has revealed.

What other children perceive as normal noise can be intense and painful to autistic children, eroding their ability to communicate and learn.

Stuart McLaren, senior lecturer in health science at the Wellington campus, says researchers will investigate strategies to help those affected.

The wide range of noises affecting autistic and gifted children include general classroom noise, school bells, machine noise from fans, vacuum cleaners and lawn mowers - and unexpected ones such as dogs barking and road works.

Along with young children in general, the study examined groups of children with special education needs, including Asperger syndrome, Down syndrome, ADHD and the hearing impaired, and while all were seriously affected by noise, the effects on autistic children were far more severe.

"We wish to highlight the serious nature of early childhood centre noise," says Mr McLaren.

"While their hearing may be normal, autistic children process auditory information differently.

"What others perceive as normal and tolerable can be extremely intense and painful to them.

"It causes them pain, distress and confusion ... and it erodes their ability to communicate and learn," he said.

Providing quiet spaces is one way to help autistic and gifted children, and researchers will investigate other strategies.

"Much of the present work is focused on these children being integrated into regular early childhood education environments.

"However, we must look more closely at the learning environment too," says Mr McLaren.

"Why is it acceptable to expect autistic children to negotiate their way around any such environment when we never expect children with physical disabilities to negotiate their way up a flight of steps?"

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Tuesday, November 01, 2005

Training parents aids autistic kids' language

By Amy Norton

NEW YORK (Reuters Health) - Training parents to better communicate with their autistic preschoolers can spur children's language development, according to a study of one such training program.

Though parental training courses are a growing part of managing autism spectrum disorders, there has been little evidence from clinical trials that the approach aids children's language, behavior and social skills.

"The evidence base has been very limited, so our study is a major contribution," Dr. Helen McConachie, of the University of Newcastle in the UK, told Reuters Health.

Specifically, she and her colleagues found that a program known as More Than Words helped parents build their 2-, 3- and 4-year-old children's vocabularies. The program, which was developed by Canadian doctors, teaches parents how to interact with their autistic children in a playful way-using "fun" words, games, musical speech and other tactics to aid their language development.

The findings are published in the Journal of Pediatrics.

Autism spectrum disorders refer to a group of developmental impairments that includes autism and a milder disorder called Asperger syndrome. All of the disorders involve varying degrees of impairment in communication, social interaction and behavior.

In more severe cases, children may speak very little and use single words rather than sentences. They also often have trouble reading other people's non-verbal "cues," like facial expressions, body language and tone of voice.

Parents in the current study attended a weekly, 20-hour training course that taught them to interact with their preschoolers in particular ways designed to spur language development. Parents trained together in small groups, the researchers note, which allowed them to give each other support and share experiences.

McConachie and her colleagues compared 26 parents who went through the course with another group of 25 parents who had not yet attended. Seven months into the study, children in the program had a larger vocabulary overall than those whose parents had not gone through the course.

In observations of the parents, the researchers found that those who went through training were more likely to use language-building "strategies," such as simple language, attention-grabbing words, praise and games.

Though the study was small, McConachie said it was larger than most previous studies of early interventions for autism and, unlike many studies, included a comparison group where parents had not yet received training.

That makes it more likely that the children's language gains were sparked by their parents' training, according to McConachie.

She noted that the first large-scale clinical trial of such training -- the Preschool Autism Communication Trial -- is set to get underway in the UK next year.

SOURCE: Journal of Pediatrics, September 2005.

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Genetic Cause Of Speech Defect Discovered

Researchers at the University of Toronto (U of T), Capital Health's Stollery Children's Hospital in Edmonton, Toronto's Hospital for Sick Children and their international collaborators have discovered a genetic abnormality that causes a type of language impairment in children -- a discovery that could lead to isolating genes important for the development of expressive language.

Read more ...

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