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November 8, 2001        News Morgue Search  www.feat.org/search/news.asp

CARE

·        Siblings Often Grapple With Their Role as ‘Parents’ of Disabled

 

RESEARCH

·        Four Prominent Scientists to Present at IMFAR Conference

·        Letter to FEAT Newsletter: Autism and Canada

·        Reader’s Posts

 

 

Siblings Often Grapple With Their Role as ‘Parents’ of Disabled

Caregiving: Brothers and sisters of those with special needs turn to support

groups to help them cope. It helps if they get help starting in childhood

[By Marilyn Kennedy Melia, Chicago Tribune in the LA Times.] http://www.latimes.com/features/health/la-000088391nov05.story?coll=la%2Dhea dlines%2Dhealth <-- Address ends here.

Some of Dorothy Traver’s childhood memories involve her and her sister, Jeanne Harrigan, doing typical kids’ stuff, like watching cartoons or tearing open presents on Christmas morning.

Plenty of other recollections, however, involve Dorothy playing a more maternal role with Jeanne, who’s just 11 months her junior. Dorothy remembers, for instance, helping Jeanne get dressed or guiding her across the street.

Today at age 52, Traver, who lives in Wheaton, Ill., a Chicago suburb, still struggles between a maternal role and one as a sibling—an equal—with Harrigan, who was born with mental and physical disabilities. Indeed, in families in which a child has special needs, siblings grow up with a set of experiences unique from those shared between healthy brothers and sisters.  And as they age into adulthood, the healthy sibling must often assume the difficult duty of taking over for a parent to care for his brother or sister, especially if the disability involves mental impairments.

Because America’s aging population has brought more siblings into crucial guardian roles, and because American culture is increasingly tolerant and accepting of disability, efforts to help special-needs individuals are widening to include the struggles of healthy siblings.

“For the past 10 years, I have concentrated on sibs. They were underserved family members who really deserve attention,” said Don Meyer, director of the Arc of the United States’ Sibling Support Project and founder of SibShops, a program with more than 200 locations nationwide to help give children an opportunity to discuss having a special-needs sibling.

Helping Kids to Deal With Range of Feelings

Meyer hopes to help kids be more comfortable with the complex range of feelings they may experience, from jealously that their sibling requires so much of their parents’ time to a fierce instinct to protect their brothers or sisters from harm. If, as children, healthy siblings can come to grips with the impact their special-needs brother or sister has on them, Meyer believes that as adults they’ll be ready to assume any caregiving duties that are necessary.

“If [well] siblings have a chance to meet their peers, they can meet others who understand, who really ‘get it,”’ said Meyer. “The kids will feel more appreciated for the many contributions they make [to their families and special-needs brother or sister],” he said. “We then hope that they will elect to remain lovingly involved in their siblings’ life.”

“Truthfully, there need to be more sibling support groups everywhere,” said Judith Loseff Lavin, author of “Special Kids Need Special Parents” (Berkley Books, $13.95). “What I’ve found is that there are support groups for younger children—not enough of them, but some. People can sometimes find groups through the organization that supports the individual condition that their child has. But right now, they are hard to locate. I hope that will change.”

Serving the Brothers, Sisters of the Disabled

SibShop (http://www.seattlechildrens.org/sibsupp) is probably the most widespread effort, and it serves brothers and sisters of children and teens with a physical or mental disability. The Web site lists groups across the United States for kids of various ages.

Through casual conversation over snacks or recreational games, the kids discover that their own personal concerns aren’t uncommon, said Tamara Besser, a disability specialist with the Jewish Children’s Bureau in Northbrook, Ill. “Especially with the younger kids, we play a game called ‘Dear Aunt Abby,’ whereby children pick a card with a question, and the group then discusses possible answers,” said Besser. Questions, for instance, might focus on: “What can I tell my friends when they ask me what’s wrong with my sister?” Or, “I’m afraid I might have caused my brother to be sick. Could I have done it?”

It’s not just problems that healthy siblings share; they often express an admiration for the courage or persistence shown by their brothers or sisters, said Kristina Lind, clinical coordinator for Little Friends, a nonprofit offering services to adults and children with disabilities.

The sibling program Lind runs often invites speech, occupational and physical therapists to talk to the children who are curious about what these professionals actually do to help their siblings.

Patti Bonifas, an Aurora, Ill., mother of four sons, the oldest of whom is autistic, relates that her two youngest sons, now ages 9 and 11, have participated in the Little Friends siblings group for the last two years. “My 11-year-old said that he doesn’t want to take basketball if it means he’ll miss the group—that’s how much he likes it,” said Bonifas.  Finding “something special” for their healthy children is often appreciated by exhausted parents, because they worry that they pour all their time and energy into caring for their special-needs child.

“Parents are often driving their child to therapy, but the brother or sister needs special time of his own too,” said Patti Hobbs, family support specialist with Easter Seals Children’s Development Center, Rockford.

Ironically, however, families’ busy schedules have caused some sibling support groups to shut down. “We stopped our group because it was too difficult to find a day and time when enough children could come,” said Margaret Wold, a social worker with the North Suburban Special Education District. The Internet can bring siblings, both adults and children, together at time they deem convenient, said Meyer, who recommends http://www.http://sibnet.org.

Another, less obvious reason children growing up alongside special-needs siblings need emotional support is that an astounding 75% of marriages fail under the strain of raising a disabled child, said Barton Stevens, owner of Life Planning Services, a Phoenix firm providing legal and financial services for families with a disabled member.

Adults Get Advice on Serving as Guardians

Although her parents’ marriage was intact and they provided a strong, loving presence for all of their four children, Kathy Tobin of Western Springs, Ill., regrets that focused attention to siblings wasn’t available to her when she was a child.

Tobin and her sister, Kim Erickson, who has a mental disability, are now in their 40s. “I was told my sister was slow and I didn’t know how to describe Kim to my friends,” Tobin said.

Now, however, Tobin said that she does find sympathetic, knowing advice from others who identify with her adult concerns on how to be an effective guardian for her sister through meetings with other siblings of the residents of the group housing operated by the Ray Graham Foundation, a nonprofit that provides an array of services for adults and children with disabilities.

“We started a parent-guardian group, and we meet four times a year, and I know that’s my support,” said Tobin.

Although Tobin said that she and her husband enjoy having Kim be an integral part of their lives, there are occasional problems finding enough time to attend to Kim’s needs.

The two other Erickson siblings, said Tobin, live out of town. They visit as often as possible, but when they do, Tobin said she has experienced guilt if Kim seems to favor her over her siblings. “I’ve always had it in the back of my mind that I wanted to take care of Kim, but I don’t want to seem as if I’ve forced it,” said Tobin. Her other sister is planning to move closer to Illinois, and Tobin said she’s looking forward to sharing guardianship duties then.

While there’s no emotion, from guilt to pride, that’s unique to siblings of the disabled, these family members do experience familial struggles unknown to others. Traver, for example, remembers a time shortly after their mother died when she lost her patience with her sister, who was expecting Traver to assume the same pampering their mother provided her.

“She would like me to be her mom,” said Traver. “I remember that one time she asked me to put the brake on her wheelchair, something she could easily do herself. I had to tell her: ‘I am not your mother, I am your sister.”’

Copyright 2001 Los Angeles Times

 

 

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Four Prominent Scientists to Present at IMFAR Conference

[From Ascribe News via COMTEX.] http://library.northernlight.com/FE20011107070000203.html?cb=0&dx=1006&sc=0# doc <-- address ends here.

As a part of the inaugural International Meeting for Autism Research (IMFAR) conference, four prominent autism scientists will identify the current level of understanding in the areas of genetics, neuroscience, the incidences (or epidemiological trends) and diagnosis of autism and present a look at where the fields are headed. IMFAR will hold its first conference on Nov. 9 and 10 to promote communication and facilitate interdisciplinary collaboration among scientists researching the disorder.

“We have brought together some of the pre-eminent researchers who understand the challenge that autism presents,” said David G. Amaral, Ph.D., professor of psychiatry at UC Davis School of Medicine and research director at the UC Davis M.I.N.D. Institute, one of the sponsors of the IMFAR conference. “These speakers will challenge their peers to go beyond that foundation and to further expand our current level of understanding of this disorder.”

Is autism inherited? Anthony Bailey, M.D., is an MRC Clinical Scientist in The Centre for Social, Genetic and Developmental Psychiatry at The Institute of Psychiatry and an Honorary Consultant in Child and Adolescent Psychiatrist at The Maudsley Hospital in London, England. Bailey will summarize research into the genetics of autism that has pinpointed some areas for further exploration. While a number of chromosomal regions have been identified as possible locations for disease vulnerability genes, several recent studies have pointed to one region - 7q - as particularly likely to be involved. In this region, some researchers have claimed that variants of genes expressed in the human thalamus or cortex may be associated with autism susceptibility. Currently other genes in this region involved in brain development are also being actively studied. Bailey added that while some people have a genetic susceptibility to develop autism, either chance or environmental factors seem to determine whether or not they will develop autism.

How are autistic brains different? Joseph Piven, M.D. is a professor of psychiatry at the University of North Carolina at Chapel Hill, where he is also director of the Neurodevelopmental Disorders Research Center. His current federally funded research focuses on understanding the pathogenesis of autism through genetics and neuroimaging. His presentation will review how technology for imaging the structure of the brain has begun to reveal subtle abnormalities.

Structural imaging has revealed that the brains in autism are enlarged and that there appears to be an age effect in that the enlargement may be more prominent at very early ages. These findings have implications for understanding brain development in autism and potentially offer a more biological description of autism at the level of neuroanatomy. New techniques being developed for acquiring and processing imaging data offer potentially important approaches to examining this phenomenon.

Is autism on the rise? One of the more well-known researchers delving into the apparent increase in autism is Eric Fombonne, M.D., who is heading the McGill University Division of Child and Adolescent Psychiatry at the Montreal Children’s Hospital in Montreal, Quebec. Rates of autism are certainly much higher than they were 30 years ago but researchers are questioning whether that reflects a change in diagnostic criteria, improved identification or a broader recognition of the disorder. Fombonne, who is associate editor of the Journal of Autism and Developmental Disorders, will discuss how the definition of autism has evolved since the initial benchmark epidemiological study in 1966 and may be partially responsible for the spike in rates of autism.

Is there a universal definition for autism? Catherine Lord, Ph.D., professor of psychology at the University of Michigan and director of the Autism and Communication Disorder Clinic, is best known for her work in longitudinal studies of children and adults with autism and the development of diagnostic measures used in both practice and research. She will be addressing the diagnosis of autism and, in particular, the defining behaviors of children with autism. People with autism represent a broad spectrum of impairment, ranging from normal intelligence and good basic language skills to significant intellectual deficits and little or no language. A common diagnostic scheme for assessing the complex social and communication deficits that constitute key features of the disorder has been a critical prerequisite to scientific progress.

The International Meeting for Autism Research (IMFAR) is being promoted as the first-ever scientific research conference specifically devoted to the topic of autism. The conference is underwritten collaboratively by the Cure Autism Now Foundation, the UC Davis M.I.N.D.

Institute and the National Alliance for Autism Research (NAAR). Its mission

is to provide a unique opportunity for researchers, advocates, health care

professionals, service providers and others affected by autism to discuss

and promote new research into the condition. www.imfar.org In order to reach

the IMFAR virtual newsroom, please log onto

http://www.newswise.com/vpr/mtg2001.ucm.html

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Letter to the FEAT Newsletter

Autism and Canada

 

On the article regarding the failure of the Canadian medical system for people with autism [http://www.feat.org/scripts/wa.exe?A2=ind0111&L=FEATNEWS&P=R2], I have to say failure is an understatement in some cases.  I live in Newfoundland where the provincial government put in what we in the community jokingly refer to as “Paula’s Pet Project.”  That is, the government took the stand of implementing a pilot project which accepted only 20 children (of which mine was not one).  The joke being that this pilot is using ABA methods that have been used/standard elsewhere for many years!  The last time I checked, the government decided to absorb the remaining wait list of 24 children who, incidentally, will probably have to wait until next year to be “absorbed.”

This project does not even address what happens to the children when they enter the education system here.  I have to say, in one respect, I feel somewhat lucky that my kid wasn’t in the pilot.  These kids received 30 hours of intensive treatment daily - what will they receive in school?  Nothing.  They will be lucky to have a student aide for half a day.  Never mind that the teachers for the most part have no training in how to adapt their teaching methods to work with these kids.

It is almost perverse to laugh at this pilot as it has been called when, in a province of about ½ a million people, we are averaging 3 new diagnoses a month.  What did the government think?  That the pilot would take care of the few and no new diagnoses would occur?  Or that many families, like myself, have to consider uprooting to another province because the financial cost of teaching our kids has put us into bankruptcy.  I guess our families are not included in the program set up by the government to address out-migration of skilled workers called Stemming the Tide.

Nicola Quilliam, Stephen’s mom

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Reader’s Posts

EARS of Lowell will be offering auditory integration training in Singapore/ Jakartha, Indonesia & Kaulalumpur, Malaysia.  Nov. 30 to Dec. 09, 2001.

Parents and professionals who want to enroll their kids and students, please

Delray Beach, Florida family would like to plan a ski trip with their 4 year

old autistic son. If you have had a good experience with a ski resort, we

 

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