Thanks
to all of you who joined the partyers at this years Mask
Making Party. Especially thanks to the folks from the
Cloud City Garrison for bringing Princess Lea and some
awesome storm troopers, and to CenterStage Karaoke. You
guys rock!
On your right you can see some of our Autism Rocks Holiday
Cards. We offer 61 unique holiday designs by 17 artists
with autism, each card available in two sizes at 5 cards
for $12, or you can order our special sets (pictured at
right) 12 cards for $24, plus shipping. Please consider
supporting these talented artists this holiday season.
You can save the most money by visiting
us at the Holiday
Market at the Fairgrounds this weekend, Nov. 23-25.
We will offer the 'special set price' on all
the cards, mix and match, 12 for $24. Autism Rocks will
be in the "Holiday Hall", to the south of the
main exhibit room, 10-6pm all three days. Some of the
local artists will be there, too.
In the news, our local "Queen of Autism", Mary-Minn
Sirag, was recently recognized as the Volunteer
of the Month by United Way of Lane County. Said KindTree's
President, "Our mission is to make it more acceptable
- to make it not this tragic condition, but rather a different
culture. To look at autism in a positive way."
"I really love the organization. I love the attitude.
And I love the people, " she continues. "When
I met them, they were kindred spirits immediately."
Her interview appeared in the Eugene Register Guard,
Oct 28, 2007.
You may have noticed recently the American
Academy of Pediatrics has recomended all children
should be screened for autism at age 18 months and again
at age 2 even if they show no signs of developmental delay.
The hope is that universal screening during well-child
pediatric checkups will lead to earlier diagnosis of the
disorder. There is growing recognition that early diagnosis
and intervention can result in better outcomes for children
with autism and related disorders.
I read this article the same day I received another article
noting that an observational study of physician prescription
patterns indicates that 80% of children diagnosed
with autism or Asperger disorder are treated with at least
1 psychiatric drug. Treatment typically includes
behavioral, educational, and pharmacologic components.
A lack of understanding about the characteristic use
of medications to treatment ASD led Dr. Gerhard to sift
through data from the National Ambulatory Medical Care
Survey and the National Hospital Ambulatory Medical Care
Survey for answers. In combination, he said, they reflect
the experience of 2 million visits involving autism or
Asperger disorder annually.
Having both these articles arrive on my desk the same
day seemed to mean something. Are pharmecuetical companies
driving this push toward more screening? Does early creening
really help? Why are so many kids given medications? Are
they mostly used as a component of a larger treatment
plan?
Members of the autism community discussed this recently
at the ASO-LCC meeting. Some said kids
with PDD, bi-polar and more also experience significant
prescription rates, that early diagnosis is key for maximum
future development and that cultural differences can unduly
delay diagnosis. Lane County is doing a good job of accurately
diagnosis kids with autism.
Mirror-neurons were discussed. It has
been claimed that damages to certain cerebral structures
can be responsible for mental deficits such as autism.
Those structures may be mirror neurons, a neuron which
fires both when an animal acts and when the animal observes
the same action performed by another (especially conspecific)
animal. Thus, the neuron "mirrors" the behavior
of another animal, as though the observer were itself
acting.
Autism continues to be a mystery, but now it is one pursued
by researchers, organizations, parents, educators and
generous citizens. People are working on this everywhere.
Local organizations like the University of Oregon, Bridgeway
House, KindTree, ASO-LCC and even Lane County, along with
others, are working for the wider world as well as folks
right here. Each one of us makes this effort because we
can plainly see the special gifts every person with autism
has to offer the world. We are all in motion together
to be the best we can be and celebrate our achievements,
our sense of joy.
It's quite a ride, isn't it?
Tim Mueller
"In an effort to better serve the autism and mental
health community, Kitty Piercy and the Eugene City Council
have appointed Tim Mueller to serve a four year term as
a Eugene Police Commissioner. Mr. Mueller is also the
vice-chair of the Lane County Mental Health Advisory Committee,
a chapter representative for the ASO-LCC, active in OPAL,
and is member of the Coordinating Council of the OCF Community
Village."
With over
34 years of experience, Autism And Special Needs
Furniture creates custom micro fiber foam-filled
pillow furniture with optional protective cover systems.
Our products have been developed with the help of Mary-Minn
Sirag and several local occupational therapists specifically
to serve the demands of the special needs community. Products
include: The Hug Chair, The Hug Bed & Lounger, the larger,
free-standing Nesting Chair and Nesting Love seat, and many
more. Visit us on the web at www.autismfurniture.com
or visit our store at 1851 River Road in Eugene. Safe, supportive,
comforting, durable, and affordable, perfect for any special
needs!
Robb
Bokich
donated 2 beautiful pillow chairs that we raffled off
at this year's Retreat. Thank you so much, Robb!
EVENTS
November 23, Portland
Daysails - recreation on the water.
December
2, 1:30 - 4 p.m. at the
Northwest Autism Foundation Auditorium at 519
15th St., Oregon City, OR. Arthur Krigsman,
M.D. of Thoughtful House Center for Children
is visiting the Pacific Northwest in early December,
offering lectures for physicians, professionals,
and caregivers on the evaluation and treatment
of gastrointestinal pathology common to children
with autism spectrum disorders.
INFORMATION AND REGISTRATION: www.autism.com/ari/KrigsmanNW.htm
December
7 10 -
7pm Art Careers Art Show and SaleHilyard Center. Showcasing the work of community
artists who experience disabilities.
A variety of quality artistic pieces
including painting, cards and jewelry
will be displayed and available for
purchase. All proceeds from every
sale go directly to the artist.
Refreshments will be served.
KindTree will be there, too.
Hilyard Community
Center Adaptive Rec Programs: December 8
Holiday Crafts December 14
Holiday Dance
Partners
in Policymaking (PIP)
has been a critical part of creating family and self-advocate
leaders in Oregon's developmental disabilities community
for over 10 years. This program is offered only
every two years. We are now accepting
applications for our 2008 class!
Because of a delay in getting the applications out we
are extending the due date to November 23.Please
share the attached application with family members or
self advocates you think might be interested.
Applications are also available on line at www.Oregonpartners.org.
Participation requires an eight month commitment to
spending one weekend (Friday noon to Saturday at 4pm)
a month in Salem. PIP begins in March 2008. The program
is free and some reimbursement for travel and childcare
is provided.
Our future depends on skilled, knowledgeable leadership!
Help us identify and nurture that leadership!!
New
Independent Artist Siobhan Forrester in the News Again
Siobhan's
Dream website was inspired by my daughter Siobhan.
She was diagnosed with Autism at the age of 2 in April
2006. See
her art here...
"they're running siobhan's story in the local
paper again tomorrow because they got such a positive
response! i've been FLOODED with emails! she's gonna
be on dr. phil as well... i'll let
you know wham it aires.
and, i know i've said this, but i admire & am
grateful for what you do... there should be more people
spreading the hope & positive things about autism
like some of the beautiful artwork they create! i get
tired of all the depressing, hopeless videos & stories
i see. you're site is so inspiring & refreshing.
The
University of Oregon (U of O) has a University Center on Excellence
in Developmental Disabilities (UCEDD). The UCEDD
has been serving individuals with disabilities and their families
in Lane County and the State of Oregon for more than 30 years.
The Community Advocacy Council (CAC) provides input to the mission
and operations of the UCEDD.
Kulongoski
vows better care for disabled
The Associated Press
Published: Sunday, November 11, 2007
SALEM —
Gov. Ted Kulongoski wants a quick fix in how Oregon cares
for people with developmental disabilities. He and key
lawmakers say it will be a priority in February's Legislative
session.
The Oregonian reported earlier that at least one of every
five adult clients in state-licensed foster or group homes
have been seriously abused or neglected since 2000, the
year the state closed the residential Fairview Training
Center.
Kulongoski said the goal in moving people out of Fairview
was to ensure better care.
Advocacy groups have demanded meetings with state Department
of Human Services officials to determine how to reduce
frequency of abuse.
The state cares for about 4,200 adults with conditions
such as autism, mental retardation and cerebral palsy
in 1,100 group and foster homes. About 16,000 developmentally
disabled Oregonians receive various state services.
Oregon Department of Human Services Director Bruce Goldberg
said Kulongoski asked him to fast-track a computerized
registry to weed out abusive caregivers.
The state had planned to ask the 2009 Legislature for
funding.
"We're going to be working with the Legislature
to do that in February," Goldberg said.
Most states require a registry to track caregivers with
a record of abuse or neglect.
Since Fairview closed more than 2,000 developmentally
disabled adults were victims of abuses ranging from medical
neglect to rape, beatings, thefts and improper restraints.
At least 14 died as a result.
In most cases state-paid care providers were found responsible.
The newspaper identified more than 200 caregivers who
were repeat violators.
A report on abuse
of the developmentally disabled shows
Friday, November 09, 2007
The Oregonian
S
ixteen years ago, when Barbara Roberts was governor- elect,
she was mercilessly mocked for a remark she made upon
completing Oregon's first state budget after passage of
tax-cutting Measure 5.
"More people will die because of what
we have done here," she said, prompting jeers from critics
across the state.
In
recent years, however, Roberts has turned out to be a
prophet. The Oregonian's Michelle Roberts (no relation
to the former governor) illuminated this in a 2002 series
examining the cases of scores of Oregonians who died after
seeking help from inadequate mental health services. She
built upon that story last Sunday with a disturbing account
of developmentally disabled adults being abused by their
caregivers under lax state supervision.
The
reporter's analysis of state records showed that one in
five developmentally disabled residents of Oregon have been mistreated since 2000. That
was the year the state closed FairviewTrainingCenter, the notorious institution in Salem, and placed its residents
in foster care or small homes operated by the state and
charities.
Since then, Roberts reported, more
than 2,000 of Oregon's most vulnerable adults "have been robbed,
beaten, raped, neglected and cursed at, most often by
their state-paid caregivers." At least 14 of those victims
died after workers failed to provide the care they needed.
Oregon spends a whopping
$134 million a year to house and care for 4,200 of these
adults, or nearly $32,000 each, plus millions more on
the training and monitoring of the caregivers. The problem
appears to be that state spending on this training and
monitoring was severely cut in recent recessionary years
and was never completely restored.
Meantime, state oversight has devolved
into a crisis-response mode. And that contributed directly
to the 14 deaths, including that of Natasha Thomas, 25,
whom paramedics found dead in a bathtub, the victim of
gross neglect by her foster care provider.
The
story of her death, and that of several others reported
by Roberts in grim detail, will justifiably spark calls
for action in the Legislature. But before a single extra
dollar is allocated, lawmakers should demand that the
Oregon Department of Human Services produce a package
of reforms showing exactly how the state is going to refocus
its services to the developmentally disabled.
For
starters, when is the department going to quit dragging
its feet and establish a computerized registry to identify
abusive caregivers and deny them jobs? When is the department
going to get moving on a new policy directing caregivers
to make 9-1-1 calls more promptly?
When
is the department going to strengthen its financial controls,
making sure the millions it disburses to caregivers actually
get spent on care? And when is the department going to
do a more effective job of upholding licensing standards?
Once
such questions are answered, it will be time for legislators
to allocate more adequate funding for training and monitoring
Oregon caregivers.
Without it, as a prophetic leader once
said, people will die.
Cal-Oregon
Unvaccinated Children Survey
In 1983, the Centers for Disease Control recommended a total
of 10 vaccines for our children. In 2007, the CDC recommends
36, an increase of 260%. Yet, no studies have ever been done
to compare neurological disorder ("ND") rates of unvaccinated
children to vaccinated children. We commissioned a national
market research firm to survey more than 13,000 children in
California and Oregon.
"We surveyed over 9,000 boys in California and Oregon
and found that vaccinated boys had a 155% greater chance of
having a neurological disorder like ADHD or autism than unvaccinated
boys." -Generation Rescue, June 26, 2007
This morning, November 13, President Bush vetoed the
FY 2008 Labor, Health and Human Services and Education
Appropriations bill. This bipartisan bill had strong support
in both the House and the Senate, but the President objected
to the overall funding levels of the bill, which includes
modest increases for vital programs - most of which have
experienced significant cuts, lost purchasing power or
both over the past three years.
This legislation includes significant increases for autism
programs at the Centers for Disease Control and Prevention
(CDC), the Health Resources and Services Administration
and the National Institutes of Health. These increases
represent full funding of the Combating Autism Act, and
are critical in improving our ability to diagnose, intervene
and develop new therapies for autism. We need this crucial
investment!
The House could move to override the President’s
veto as early as this week. Contact your Member of Congress
and urge them to vote YES on the veto override.
Or if that hasn't worked, you can still tell the President
and congress how you feel.
Maternal
Residence Near Agricultural Pesticide Applications and
Autism Spectrum Disorders Among Children in the California
Central Valley
Abstract
and Introduction
Abstract
Background: Ambient levels of pesticides
("pesticide drift") are detectable at residences near
agricultural field sites. Objective:
Our goal was to evaluate the hypothesis that maternal
residence near agricultural pesticide applications during
key periods of gestation could be associated with the
development of autism spectrum disorders (ASD) in children. Methods: We identified 465 children with
ASD born during 1996–1998 using the California Department
of Developmental Services electronic files, and matched
them by maternal date of last menstrual period to 6,975
live-born, normal-birth-weight, term infants as controls.
We determined proximity to pesticide applications using
California Department of Pesticide Regulation records
refined using Department of Water Resources land use polygons.
A staged analytic design applying a priori criteria to the results of conditional
logistic regressions was employed to exclude associations
likely due to multiple testing error. Results: Of 249 unique hypotheses, four that
described organochlorine pesticide applications—specifically
those of dicofol and endosulfan—occurring during the period
immediately before and concurrent with central nervous
system embryogenesis (clinical weeks 1 through 8) met
a priori
criteria and were unlikely to be a result of multiple
testing. Multivariate a posteriori models comparing children of
mothers living within 500 m of field sites with the highest
nonzero quartile of organochlorine poundage to those with
mothers not living near field sites suggested an odds
ratio for ASD of 6.1 (95% confidence interval, 2.4–15.3)
. ASD risk increased with the poundage of organochlorine
applied and decreased with distance from field sites. Conclusions: The association between residential
proximity to organochlorine pesticide applications during
gestation and ASD among children should be further studied.
Trips Inc. Young Adventurers is an offshoot of the award
winning Trips Inc. Special Adventures. Our Young Adventurers
program is designed for travelers between the ages of
16 and 22. Travelers between these ages can also take
advantage of any of the trips offered in our regular catalogue,
but only people in this age range can participate in the
Young Adventurers program.
Historically, school travel groups promote independence,
learning, and fun. The inspiration behind the Trips Inc.
Young Adventurers program is to provide specialized travel
opportunities to accommodate the special needs of high
school/transition students who want to travel with a group
of their peers, Each traveler is thoroughly screened by
our program director and a detailed profile is completed
to ensure the safety of each traveler.
Here are the two vacations we are offering our Young Adventurers
for the summer of 2008:
DISNEYLAND and CALIFORNIA ADVENTURE
THEME PARK
July 18-21, 2008 (4 days) Package: $1495
(*Airfare included)
• Go on an adventure with Indiana Jones and take
the plunge at Splash Mountain
• Meet your favorite Disney characters and watch
the Disney's Dream Come True parade and fireworks show
• Spy Captain Jack Sparrow on the Pirates of the
Caribbean ride
• Blast off on California Screamin', go Soarin'
over California and dare to enter the Tower of Terror
SAN DIEGO ZOO and SEA WORLD
August 8-11, 2008 (4 days) Package: $1495 (*Airfare included)
• Meet Shamu, the killer whale, come face-to-face
with sharks and chill-out with penguins at Sea World
• See giant pandas, exciting shows and have close-up
animal encounters at the San Diego Zoo
• Relax by the pool at the beautiful Holiday Inn
Sea World
• Crash the waves at Shipwreck Rapids and feed the
dolphins at Sea World
(*Contact us for more details and restrictions.)
For more information on this exciting new program
please click
here.
"What
Every Parent Ought To Know About Their Autistic Child......."
If you’d like to have a better understanding of
the reasons behind your autistic child’s behaviors.....
So you can help your child more and take some of the
pressure off you and the rest of your family then this
could be the most important letter you ever read…..
....Look after 11 years working in social work with autistic
children and their families I know about the many challenges
and frustrations that you are facing with your autistic
child….........
.......One of the big problems is that you really want
to understand what is going on in your child’s head
so that you can do the best possible job for them…
But getting the right answers and help to do this just
isn’t always that easy…..
I have had so many parents just like you asking me questions
such as........
* "Are there different types of autism and how is
it best treated?" *
* "Will my child ever become normal, like other
children ?" *
* "What consequences will I be facing in the future
with my autistic child?" *
* "Where can I get get help for my child?"
*
and a thousand other similar questions besides…….
So I have decided to put up this website to help parents
like you gain a better understanding of your autistic
child.............
Electrifying Science &
Tech Instruction with Wired Science
by Michael Lampert
I am one of those science and tech geeks who thoroughly
enjoys all of the great science shows produced by PBS.
I loved Bill Nye the Science Guy, Scientific American
Frontiers with Alan Alda, and of course the best of all
science documentaries, NOVA. Each and every program has
its own special, entertaining and informative spin on
science, and all of them have been part of my teaching
over the years. So, I am absolutely delighted that a new
science program, Wired Science, will premiere on PBS stations
this October.
This entertaining and educational show — produced
by KCET in affiliation with Wired magazine — offers
teachers and students the opportunity to venture into
the field with scientists who are using science and technology
to influence 21st century culture and innovation. The
show incorporates Wired magazine’s style and humorous,
slightly irreverent tone. The quick pace and short episode
segments will maintain student interest and easily blend
into introductory science lessons. Wired Science will
certainly reside in teachers’ video libraries for
many years to come.
Wired Science will air for ten weeks with one-hour shows
broken into approximately four segments. This October,
the show offers stories on computer hacking, robotic doctors,
mind readers, gun shot detectors, the demise of the home
chemistry lab, lie detection systems, ocean currents,
unmanned aerial vehicles, infrasound, and other cool topics.
Interspersed throughout the program are interviews with
renowned scientists as well as explanations of how ordinary
things work. Accompanying the show will be an educational
Web site featuring lesson plan ideas from outstanding
teachers across the nation, articles about exceptional
science teachers and students and, coming soon, a “Careers
in Science” section and a student video contest.
I encourage you to visit the Web site and blog with some
of the experts there. In the meantime, hang with me here
as I focus on things that worked for me in the classroom.
Dealing with life: One
day at a time
By Eve Newman
Boomerang Staff Writer
Hayden Schroyer, 6, is all boy, his mom will tell you.
It’s his interest in trucks and tractors she’s
referring to, which are scattered around his bedroom,
which he runs back and forth across the floors when he
comes home from school. As he slides along on his knees,
he tracks them from wood floor to rug and back to wood.
The red and yellow one, whose clanks and rumbles reveal
its age, was the one his dad played with when he was a
kid. As Hayden pulls it around, he points to the seat
where “pap” sits.
Ask Hayden how old he is, and he pauses. He looks at
his mom, who’s sitting on the couch nearby. Then
he looks down at his tractor as he traces it back and
forth atop his knees. Then his eyes wander to the television
overhead.
Karen Schroyer keeps up a steady conversation to him,
leaning over and clasping her hands: “You love that
truck, huh?” “Are you sitting on the roof?”
“Are you too big?” “How old are you?”
Although Hayden doesn’t always respond, she’s
not deterred. In fact, she says, they’re making
slow and steady progress.
“It’s a lot and a lot of repetition every
day, but every day, you see a little bit more of that
sparkle, of that clicking. You just love it,” she
says.
The other night, she watched him create an imaginary
scenario as he played with his tractor. Recently, he pretended
that a French fry was an airplane. A year ago, team sports
seemed impossible, but this fall she coached while he
played soccer.
Imagination, problem solving and flexible thinking may
seem like everyday occurrences for typical children, but
Hayden Schroyer has autism, and some behaviors and interactions
are a constant challenge.
I learned the value of the motto "Be Prepared" when I
was a Boy Scout. While you can't prepare for everything,
you can anticipate likely events and plan for them, such
as being in a car accident.
Car accidents are a concern for parents of children with
Asperger Syndrome. My wife and I frequently get asked
by parents if our 24 year old son, Drew, who has Asperger
Syndrome, drives. Yes. And he's a careful driver. So careful
that he once spent a second too long looking down to make
sure he was doing exactly the speed limit, and couldn't
stop in time when the driver in front of him slammed on
her brakes. There was bumper damage on each car, but no
one was hurt. Since then, Drew has adapted his glance-down
time.
Recently, Drew has been involved with two other accidents
that were not his fault. Both were minor and no one was
hurt. His first two "accident experiences" helped him
learn the procedure for dealing with such situations.
He was a lot more calm and confident dealing with the
third incident.
Anyone can be shaken by a car accident, even a minor
fender-bender. For some people, the aftermath of dealing
with the other driver, witnesses and the police may seem
more overwhelming than the collision.
After Drew's first fender-bender, I customized a "post
accident checklist" and put copies in our family cars.
I recommend everyone keep such a checklist, and go over
what to do in case of an accident with every driver in
the family.
Statistics tell us that even careful drivers risk having
an accident sooner or later. Some accidents are unavoidable.
Drew had one driver scrape his back bumper while he was
stopped at a traffic light, and another suddenly pull
into his path from a driveway.
Picture how each driver in your family would be likely
to respond after an accident. Wouldn't it give you more
peace of mind to provide them with some written instructions
and maybe hold a practice session walking through what
to do? You might even arrange for a police officer to
talk with your son or daughter and explain what to expect.
Your car insurance agent can probably supply you with
a "If You Have An Accident" checklist that you can personalize
based on your family members' needs. Many insurance companies
post such checklists on their websites.
At the end of this article, I've included a simple version
of the accident checklist we keep in our cars, minus our
personal information. This works for us. You need to determine
what will work for you, based on your situation and your
state and local laws. I'd recommend filling in your personal
information beforehand and printing several copies. Also,
you might want to put the documents in a three ring binder
or on a clipboard so the driver has a portable writing
surface -- and attach a pen.
I was able to be on the scene quickly after the most
recent incident, where the car pulled out in front of
Drew. While I was initially relieved to learn that no
one was hurt, I felt a second wave of relief to see Drew
dealing calmly and confidently with the other driver and
the police.
This is the way you want your family member to be able
to deal with this situation. Trust me.
ABOUT THE AUTHOR: Dan Coulter produces videos about Asperger
Syndrome and autism. His latest release is, "Understanding
Brother and Sisters with Asperger Syndrome." You can find
more articles on his website at: www.coultervideo.com
Copyright 2007 All Rights Reserved Used Without Permission
From the CDRC
The Autism Program at CDRC is very interested in developing
a better understanding of individuals with autism and
their families within the state of Oregon. To that end,
we have developed an anonymous survey for parents
of children with autism to complete. Specific items cover
our interests in the areas of etiology, diagnosis, treatment/intervention,
support, and participation in research.
The survey takes about 15-20 minutes to complete. Please
complete a separate survey for each individual in your
family with autism or a related disorder. None of your
answers will provide identifiable information, and please
do not provide additional information that would allow
us to identify you or your child.
Finally, THIS SURVEY IS FOR RESIDENTS OF OREGON ONLY.
PLEASE DO NOT COMPLETE UNLESS YOU CURRENTLY LIVE IN OREGON.
Autism Research Review
International
1987 to 2004, Volumes 1 to 18 Document en français
The Autism Research Institute has published the Autism
Research Review International (ARRI), its quarterly newsletter,
since 1987. The ARRI provides clearly written summaries
of articles selected from computer searches of more than
25,000 scientific and medical articles published every
week. Only the most relevant and important studies on
biomedical and educational research are presented. The
ARRI has received worldwide praise for its thoroughness
and objectivity in reporting the current developments
in autism.
More than 18 years worth of ARRI newsletters are now
available -- Volumes 1 through 19 (volume 20 is coming
soon). This detailed index helps parents, professionals
and students quickly locate articles of interest.
Subscribe
to the ARRI today to receive the most important research
findings in the field of autism. Visit the Visit the ARI
Store to subscribe. U.S. subscriptions are $18/year, non-U.S.
subscriptions are $20/year.
Indexed by Mary-Minn Sirag of Eugene, Oregon
VISIT eSCRIP
and Help Us OUT!! /
Or print the sign up form HERE
You and Your Quirky Kid
The girl who wears her clothes inside out, the boy who loves
plumbing. What parents and experts say about the children who
just don't fit in.
By Lorraine Ali
NEWSWEEK
Updated: 4:09 PM ET Sep 15, 2007
At a recent pre-school musical, my son was to stand single file
onstage with 13 classmates and perform "Let's All Sing
Like the Birdies Sing" while flapping the wings of his
bright yellow canary suit. As the other kids sang, fidgeted
or stood there, stunned by the audience, he broke ranks and
began marching to his own tune. He spun, then stomped, then
shimmied his way out of line as if responding to several different
styles of music no one else could hear. Seemingly unfazed by
the crowd of parents seated before him, he wandered about the
stage, shouting his own improvisational lyrics (something about
babies and broccoli), which were picked up by a nearby mike
and broadcast throughout the auditorium. As the other parents
laughed, I vacillated between feelings of pride (my son's such
an individual!) and fear (why is he so different?).
Because, even at 4, it's clear my son is different. On the
playground, he's bonded far more with one particular tricycle
than with any classmate, and during circle time he's the only
child who consistently wanders off to inspect the pipes under
the sink or play with the push broom. His unconventional behavior
may not sound like a big deal-and it wasn't, until some well-meaning
educators noticed my son's quirks and asked if he'd ever been
diagnosed.
But just how do you determine the difference between a nonconformist
kid and a child with more serious issues that may need to be
addressed? Previous generations of parents could embrace, or
overlook, their child's tics, quirks or eccentric personalities
much more freely than the moms and dads of today. If their daughter
was reading "Moby Dick" by first grade, she was gifted.
If their toddler wasn't talking by 2, he'd likely catch up by
kindergarten. Even pediatricians were far less versed in things
like attention-deficit/hyperactivity disorder (ADHD) and the
autism-spectrum disorders, which didn't start showing up on
their radar screens until the '80s and early '90s. But today
we know so much more about how the brain functions, what causes
some unusual behavior and how a child can really benefit from
early intervention, that we're obligated as "good parents"
to have our children's peculiarities evaluated. (Of course,
there is no mistaking the more severe forms of autism for quirkiness.)
It can mean running a toddler through a bevy of experts-pediatric
neurologists, speech pathologists, behavioral psychologists,
socialization experts-before he's out of training pants. More
and more, kids who once would have been considered slightly
out of step with their peers are emerging with diagnoses of
sensory-integration dysfunction, dyspraxia and pervasive developmental
disorder, to name a few. In past decades, autism was thought
to occur in about one child in 2,000. Today, the U.S. Centers
for Disease Control and Prevention estimates that one in 150
kids has an autism-spectrum disorder. And just last week, a
new study found that the number of kids in the United States
younger than 20 receiving a diagnosis of bipolar disorder had
soared from about 18,000 in 1994 to an estimated 800,000 in
2003.
So what do we do about the eighth grader who alienates peers
with his obsessive talk of baroque architecture, or the 6-year-old
who'd rather spend recess talking to the hamster than playing
dress-up with her classmates? Is it possible we shouldn't do
anything? "Of course it is a source of deep sorrow when
it is obvious that a youngster can never lead 'a normal life'
because of special needs," says Dr. Elizabeth Berger, a
child and adolescent psychiatrist whose books include "Raising
Kids With Character." "All the same, there is something
amiss when every mother is susceptible to fears whether or not
this week's fashionable diagnosis applies to her child. There
is something unexamined in our thinking when we elevate the
need for normalcy to a state of spiritual grace, and live under
a constant anxiety that we fail to measure up to its demands."
If we examine ourselves and those around us-the husband who
shuns picnics because he can't stand the texture of grass, the
co-worker who can't get along without those billion organic
remedies on her desk-we have to admit that everyone, to some
extent, is odd. The terms "normal" and "abnormal"
are subjective-words whose interpretations can be as varied
as the people who speak them. So when we worry about our kids'
strange behavior, is it because they deviate from our own expectations
of what life should be like for a "well-adjusted"
5-, 7- or 12 year-old, or is it because that little person in
front of us seems to struggling way more than she should? "Parents
need to ask themselves, Is this making him unhappy or just making
me unhappy?" says Dr. Perri Klass, pediatrician and coauthor
of "Quirky Kids: Understanding and Helping Your Child Who
Doesn't Fit In-When to Worry and When Not to Worry." "Is
he having a perfectly good time in school, but he's not interested
in the things the other kids are interested in? Or is he desperately
trying to be part of something but doesn't seem to understand
how? I'm not talking about a child who's a developmental emergency,
I'm talking about the kid who's different."
According to Klass and her coauthor, Dr. Eileen Costello, skewed
development, temperamental extremes and social complications
are the hallmarks of so-called quirky kids. They define this
enigmatic and varied group in their book as children with developmental
variations: kids who don't talk on time or, alternately, "talk
constantly but never seem to get their point across"; kids
who have rigid routines or throw "nuclear tantrums";
toddlers who keep to themselves "while the rest of the
playgroup lives up to its name."
Children who fall into these (and other) categories include
Sam, 6, who confuses peers with his garbled verbal skills, but
makes them laugh when he covers with silly voices and impressions;
Parker, 13, whose daily routine includes reading Consumer Reports
cover to cover, twice, and Jaden, 7, who prefers chatting with
his Matchbox cars over talking to classmates. Two of these kids
are diagnosed with high-functioning disorders, one is not. But
all are at the center of a complicated debate among parents,
educators and experts that includes arguments for and against
getting a diagnosis (do labels help or stigmatize?) and lengthy
discussions of the pros and cons of mainstreaming (should we
keep quirky kids in "normal" schools, where they challenge
themselves and those around them to think differently, or put
them in "special" schools?).
A diagnosis can be a godsend, especially for families struggling
to help a child who is clearly unable to function. It can give
them some concrete answers, and offer resources where once there
were none. But for a high-functioning child who may seem more
enigmatic than disabled, the process and outcome is often frustratingly
subjective. "We've been told Marcus has everything from
autism to ADD to a blanket sensory disorder with such a long
name, I can't even remember it," says Tara, the mother
of a 7-year-old whose "stupid/smart" behavior has
mystified his parents. "We get different answers depending
on the specialist, and none of them seem to really fit. It makes
you wonder how much of this is really founded and how much is
just guesswork."
Klass argues that even though none of these diagnoses carries
with them a recipe-i.e., take this pill and you're cured-they
do "allow parents to access a certain amount of collective
experience that may improve their child's strengths and help
them work on areas that are weaker." Diagnoses also offer
older kids who know they're different a set of clues as to why,
and can essentially give those who never fit in a sense of belonging.
But Mary-Dean Barringer, of the nonprofit learning institute
All Kinds of Minds, says we put too much emphasis on the labels
that others assign to our kids. "We're absolutely appalled
by this diagnosis of Asperger's syndrome," says Barringer.
(Asperger's is a high-functioning form of autism, marked by
obsessive interests and impaired social interaction.) "These
are very highly specialized minds, and to put a syndrome on
it and treat it as an aberration does damage to kids and families.
There are still challenges there on how to manage it, but why
not call it a highly specialized mind phenomenon rather than
a disorder? That label alone shapes public perception about
uniqueness and quirkiness."
School is the most brutal frontier for these kids, and as we
all know, anything from a lisp to a bad haircut is grounds for
persecution. But there are other options, such as schools that
specialize in specific disorders: the Monarch School in Houston
is geared toward children on the autism spectrum; Landmark College
in Vermont is constructed around the needs of kids with ADHD.
Another way to go, experts say: if your son seems to focus only
in math class, suggest capitalizing on his strengths by sending
him to a school that emphasizes math and science. It will build
up his confidence, and may lead to an increased interest in
other areas. All Kinds of Minds has created courses (available
to schools across the country) for all sorts of quirky kids
who struggle with learning. Their advice to educators: take
each case on an individual basis and empower kids with grass-roots
techniques. "If a quirky kid is trying to talk to his 10-year-old
peers about architectural design, I'd wait until they're alone,
then say, 'You know, with that group, architecture's not going
to work, but here are some topics that might'," suggests
Barringer. "You can coach them in verbal pragmatics and
even topic selection. They may not be the most popular kids,
but it could help them navigate socially through those tough
school years."
For parents and siblings, living with a kid who's different
is almost always challenging: "It's hard on his two older
brothers," says Lisa, the mother of a 6-year-old who's
bright yet still can't carry on a coherent conversation with
classmates. "They get frustrated and embarrassed that Matt
is a little quirky. They don't know what to say to their friends,
just like I don't know what to say to mine." But the disproportionate
meltdowns at home or awkward public scenes that come with these
kids are almost always balanced by equally extreme moments of
wonder. Lily, who always wears her clothes inside out because
the seams "are just too hurty," swears she can hear
spiders walking on the wall two rooms away. Funny thing is,
the 9-year-old is often right. "My son has never received
a formal diagnosis, but has a handful of delays and quirks,"
says a parent who prefers to remain anonymous. "He's complicated
and wonderful. I see his typical peers in preschool talking
to each other, standing in line nicely, sitting in a circle.
But they seem so 'flat' to me. I'll never have that issue with
my son."
Every child is, of course, unique (quirky children, a little
more so) and every individual situation calls for its own set
of rules. But the challenges for parents with kids who are different-whatever
their glitches and eccentricities may be-are remarkably the
same. Can we make the world they're going to grow up in sufficiently
kind and welcoming to them and their quirks, and can we provide
them with the basic skills they need to navigate in that world?
I eventually did consult experts. Some of what they said was
helpful, but they offered no great, demystifying insights. I
never really did expect anyone to totally peg my son; the fascinating
little man changes on a daily basis. One day we call him Space
Cookie, the next day Sweet Pea, the next our Tasmanian devil.
But he is a whole person, the sum of all his average, stellar
and quirky parts, and my job is much like any other parent's-to
guide him when necessary, let go when I overdo it and constantly
sweep for minefields (even ones I have inadvertently laid in
his path) that threaten to obliterate his incredibly unique
spirit. I can't wait to see who he becomes, this boy in a bright
yellow canary suit, who insists on dancing to his own tune.
