Another Summer has come and gone. 100
guests at our 12th Retreat, 63 volunteers (thank you),
5 lifeguards and 1 cook - all of us had a great time.
Thank you all for being there and being family for a
weekend. It’s the best.
This last month I’ve spent some time updating
the art section of KindTree’s website. Its a work
in progress. New artists are sharing their work and
veterans continue to create wonderful stuff. All their
images are online and easy to order with PayPal. Go
take a look.
Ben Iorio draws Civil War scenes. Barbara Moran draws
trains. Suzie Noel draws big hats. They offer you a
great selection of notecards and prints, even some original
framed artwork.
One parent sent me this note, “He loves to see
them online. Are you looking for certain art work that
maybe he can practice at so they can be accepted? We'd
love to send more of what works for you. Thanks! It
really builds his self-esteem.” Who knows what
talent we can nurture, what dreams we can make come
true? Please think of KindTree when you purchase cards
this Holiday season.
HALLOWEEN is coming - and we have a fun party coming
up making your own mask and/or singing karaoke with
your friends. Plus we have a surprise for you. The Cloud
City Garrison, a group of STAR WARS Storm Troopers,
will be there to hang out, chat with everyone, take
pictures - maybe even show us a little Storm Trooper
action. So wear your costume, make a new mask, and get
up close and personal with the Empire. Good luck!
A few weeks ago the ASO-LCC met. We talked some about
the need for the autism Community to develop a unified
voice here in Oregon. From the minutes: “Our community
would benefit greatly from the establishment of a single
voice, of an "expert" source of autism info
for the legislators, and for a network of activists
that could create e-mail campaigns, visits to Salem,
etc, to support legislative efforts. We agreed it was
of utmost importance to get together as a community,
resolve our differences and agree on a core group of
policy elements to support. We are determined to do
more to make this happen.”
If you are interested in this concept, please attend
the ASO-LCC meeting November 7. Or contact me or Joyce
Bernheim Jmbernheim@aol.com.
We can make good things happen together.
KT Board member Gary Cornelius resigned this month,
citing his work at the Brethern Community Services,
and of course, he is a newlywed. Long life, Gary, and
thanks a lot. We’ll miss you.
So, folks, we have a vacancy...
Tim Mueller
VISIT eSCRIP and
Help Us OUT!! /
Or print the sign up form HERE
A
New Way to
Join the KindTree Community
Click
on the bar below to join our autism community! This
link will install a special KindTree Toolbar in your
browser, connecting you to our autism chat room and
keeping you up to date with new developments at KindTree.
Become and eFriend of KindTree and join the fun today.
ASO
Respite Program:
Take a Break on ASO
ASO-LCC
will help pay respite care expenses while you
Take a Break. Read
more here...
Autism
Rocks Mask Making Party October 21, 2-5pm.
Cozmic Pizza,
8th and Charnelton
$5 each, $20 family
Join us for fun mask making with
Star
Wars Storm Troopers & CenterStage Karaoke
Wear your own costume!
Make your own mask!
Sing your own song! get
the PDF poster here
see you then...
Interested in Gardening?
For more details about an adaptive garden,Call Charlene
Bigelow - 688-2542. She is the master gardener who
asked if KindTree knew of any autistic kids in need
of gardening experience. Grow your own food! Very
cool.
Mary-Minn's
Stim Page
(Here are personal stories about
autism. If you would like to see your musings on this
page, please email Mary-Minn at sirag@mindspring.com.)
Behind the Wheel
My biggest adult milestone was learning
to drive at the tender age of 35. It was an uphill battle–both
up steep hills in San Francisco and on mountain roads,
and up against self-doubt, which was pounded into me further
from the time I took drivers ed in high school until I
took it upon myself to hire what I called a “special
ed” driving instructor. My life journey in driving
has been a multi-faceted case history of living with autism,
before autism became a trendy topic of tear-jerking feature
articles in People Magazine.
My driving history started in rural western Maryland with
Drivers Ed in 11th grade. Brunswick, where I spent the
last 2-1/2 years of high school, was a moribund railroad
town near the foothills of the Appalachian Mountains,
across the Potomac from Virginia and Harpers Ferry. Most
students had lived nowhere else. Many of them had grown
up in poverty.
“I
see my driving experiences as a parable about living
with autism.. ”
My family had just moved to Maryland from Lebanon, where
my brothers and I attended an American prep school
that prided itself in being international, though
it was in actuality xenophobically American. Though
moving back to the States was a culture shock for
my brothers and me, I found Brunswick High more laid-back,
especially socially.
The Drivers Ed instructor Mr. Horine, was a mean old
(read, probably 55-year-old or so) sourpuss who prided
himself in his superiority in spelling. One day, he
bet us a dollar that none of us could spell Fahrenheit.
I was enraged by his presumptions that we were all “idiots”,
especially since so many of my fellow students came
from impoverished and disadvantaged families, and had
heard little else. I figuratively stuck my tongue out
at him, marched up to the black board, and spelled Fahrenheit,
sticking my palm in his face to get paid now. He was
not amused, though my fellow students were. In his eyes,
this petty act of defiance transformed me from a skinny
know-it-all to a force to be contended with through
the rest of his tenure with me.
The driving part of drivers ed provided him with a stellar
opportunity to wreak vengeance on me. Most of the driving
took place in the school parking lot. Physical obstacles
were replaced by Day-Glo red cones. Whereas most of
my fellow students had been driving their parents’
car with their parents or driving tractors, I had driven
nothing but bicycles.
The cars we drove were spanking new (1971) pastel yellow
Catalina Pontiacs, with 8-cylinder engines. Mr. Horine
would stand on the sidewalk as he barked commands over
a megaphone at the cars. In retrospect, I find it strange
that the cars were so luxurious; whereas, we had only
one instructor for 20 students. Two students were assigned
to each car. He barely explained the controls before
asking us to back up and then drive around the range.
After shifting jerkily from reverse into drive, I stepped
on the accelerator, and found my partner and me sailing
through a cornfield. She was shrieking in terror; I
was frozen by my confusion with this huge boat I was
trying to maneuver. From then on, she would slam on
the brakes whenever I depressed the accelerator.
One of my many problems was that I was too short to
see over the looming hood, which made it harder for
me to see the cones and judge my distance from them.
Worse yet was my difficulty making the conceptual leap
from cones to physical obstacles, so I was constantly
denting and running over cones. I was hopeless on the
last two days, as well, when we actually “hit
the road,”
an all-too-apt description of my nascent driving style.
Mr. Horine held onto his grudge against me. He gave
me the lowest passing grade because he didn’t
want to be required to teach me all over again at no
charge. He made this explicitly clear to me.
I passed the written part of my driving test and got
my drivers permit, but my parents were too scared of
my curb-hugging driving style to travel with me behind
the wheel, so the rigors of drivers ed were all but
wasted on me. People disparaged my ability to drive
ever.
I spent the remaining 20 years dealing with not being
able to drive. When I was 24, I moved to New York City,
partly to be able to get around easily without a car.
I lived in big cities (Washington D.C., New York, and
the San Francisco Bay Area) for the next 11 years, and
missed being able to drive when I wanted to “get
out of Dodge.”
When I was 31, I decided to actually learn to drive.
I looked in the Yellow Pages, and happened upon an ideal
instructor. I told him that I needed a special-ed driving
instructor. He told me that he taught many older adults
such as myself. He was a gentle and patient man, a former
accountant from England who shared my love of 19th century
English literature. It took me 17 lessons to drive sufficiently
well to aim the car in the right direction while keeping
inside my lane. I passed the driving test by a razor-thin
margin. The man who was testing me just so happened
to be traumatized by a serious injury incurred during
a previous driving test, so he directed me gingerly
to make safe decisions.
Over the following four years, I went out driving twice
to Muir Woods and Mt. Tamalpais in a rental car. It
wasn’t until 1989, at the tender age of 35, that
I bought my first car, a 1978 Toyota Corona station
wagon, and started driving in earnest. My future husband
and I were moving to the Sonoma coast range for our
brief back-to-the-land stint. The property we were trying
to buy was in a somewhat remote location on privately
maintained gravel roads, off the electrical grid. Driving
was essential.
For that first year, I aimed the car carefully, relying
heavily on my hair-trigger reflexes. My brakes failed
during our second day there, as I was driving down the
mountain on a lane-and-a-half hairpin turn overlooking
a cavernous precipice, with no any guard rails. Fortunately,
time slowed down for me, giving my brain time to aim
the car into the upward part of the vertical cliff,
while avoiding hitting the fuel tank. I emerged physically
unscathed, my car needing no more than a transfusion
of brake fluid and a plastering of duct tape around
the tail light on the passenger’s side.
Though my driving record so far is clear of accidents,
driving smoothly has been an ongoing challenge for me–and
even more problematic for my hapless passengers. I think
this has something to do with Theory of Mind: whereas
I am at one with the movements of a car with myself
at the controls, I am not at one with what it feels
like to be a passenger behind my wheel. In short, I
lack kinesthetic empathy. On the good flip side, I seem
to have inherited trigger-fast reflexes from my daredevil
maternal grandfather, who was a race car driver, a barnstorming
pilot, a record-breaking parachuter, and Army-Air Force
pilot between the wars. (He died in his 20s, testing
an Army Air Force plane.)
My genetically endowed reflexes are offset by a bad
sense of direction, a poor recognition of many things
including places I have been, total reliance on rote
memory, and fear of having to think on my feet. If there
is an unforeseen fork in the road, it is almost a certainty
that I will pick the wrong road, even if I’ve
encountered that fork befor e. I have yet to figure
out some way to second-guess my decision making with
reverse psychology, by calling on my iffy intuition
and then going against it.
I have lived in Eugene for 16 years, and have memorized
various lock-step routes to and from my various destinations.
From these lock-step routes, I radiate to new destinations,
usually opting for rote easiness rather than directness
or efficiency. I avoid left turns without lights. I
try to go with the dominant traffic flow, with rather
than against the right-of-way. I scrupulously avoid
new routes, where I risk having to figure out too quickly
whether it’s a four- or two-way stop or how to
merge into a dominant lane fraught with unyielding drivers.
When I am at a four-way stop is the only time I overcome
my discomfort with eye contact; I rely on it to read
the intentions of the other drivers. (I also think that
driving requires some ESP, as there often is insufficient
information to make informed and safe decisions.) I
use my good rote memory to avoid lane changes–or,
even better, to stay in the same lane. Despite having
memorized these routes, I often find myself lock-stepping
to the wrong destination. Keeping all these things straight
keeps my mind at attention.
I am quite terrified in parking lots because right-of-way
is so ambiguous. When reversing, I encounter many nasty
human and motorized surprises. The larger and more amorphous
the parking lot, the more avoidant I become. I would
sooner have to walk across the parking lot than park
in a packed no-zone closer to my destination. Same goes
for prepaid parking garages, whose rules mystify me.
On the other hand, I have always been good at parallel
parking, as it’s only a matter of figuring out
a formula for when to start turning the wheel; even
if I don’t make it the first time, I can turn
in and out until I get it right.
I have heard that many drivers space out whole portions
of their journeys because driving is so mindlessly easy.
Not so for me. Even after 18 years of driving under
different conditions, I haven’t lost the white-knuckled
immediacy of driving or the gratitude of surviving almost
daily brushes with the grim reaper.
I see my driving experiences as a parable about living
with autism. Driving provides a constant reminder of
my rigidity toward sudden changes in plan; my difficulty
multitasking, changing direction or focus; my reliance
on rote memory; my poor navigation skills. As if these
limitations aren’t hobbling enough, I find myself
up against a deficient Theory of Mind especially toward
my passengers. The rich irony is that I simulate a Theory
of Mind toward my road mates by making eye contact with
them, as it is essential to understand their intentions
at a glance. Driving has forced me to develop a level
of awareness that I otherwise would not have.
When asked, "What was your favorite
aspect of Oregon Partners in Policymaking?" Oregon
Partners Graduates replied: “I loved the info,
the application of the information, the encouragement,
the confidence, giving you the direction for your life
in the community, the schools, and the possibilities
for your children that you didn't know existed. Bringing
out emotion, all emotion for so many things, how to
channel it, and how to take care of yourself, which
is overlooked so many times. The experience testifying
at the capitol. It has elevated my life in so many ways.
PIP has helped change my life and put me on a road that
I only hoped to be on."“Knowledge really
IS power. With it all things, including change, are
really possible! The bonds and power to change will
last a lifetime. Not only will the lives of people with
disabilities become better for it, but our children
will see that strength and determination really do make
a difference. And that dreams really do come true if
you try hard enough ...What better legacy could we pass
on?"
During each one-weekend session over
the course of 8 months, Partners covers a different topic
area, and participants build their communication and advocacy
skills.
The concepts and issues presented include:
• The history of disability rights movement and
perceptions of people with disabilities
• Self-determination and self-advocacy
• Whole-life planning: person-centered plans, legal
and estate planning
• State-supported services: service coordination
and service models
• Specialized supports: assistive technology, environmental
accommodations, behavioral supports, best practices•
Special Education: inclusion, transition, federal and
state laws
• Accessibility and the Americans with Disabilities
Act
• State and federal legislative issues: how to get
involved, how to influence policy
• Community organizing: how to work together to
make systems change
I'm not
sure what or how you can help. If you can, thanks.
In Salem, there is a monthly group for Autism
Spectrum Disorder, nothing for Aspergers. There
are a few more activities in Bend and Portland,
nothing like Eugene's events.
I want meet more people, adults and children,
with Aspergers autism. I want a local counselor,
therapist for Aspergers.
I am also interested in lunches and special
diets. I want to start a lunch meeting and more.
I want Salem to have a fraction of the Aspergers
groups, meetings, counseling, lunches, festivals,
...
Nicole E F Taylor
Please contact tim@kindtree.org with information
we can send to Nicole. Thanks
THIS
IS FOR YOU!
My child has autism. I know that. I’m
not in denial. How could I be? I live it every
day. I have other children. My friends have
children. I know the difference. They answer
questions, my child might not. They play together,
my child might not. They share their thoughts,
my child might not.
My child is different. He is on his own mission.
I’m happy to be by his side. I am thrilled
when he learns something new, no matter how
small. I am proud when he accomplishes something
I once never thought possible. I take delight
in his idiosyncrasies. Please rejoice with me.
Please notice his worth. My child is multifaceted.
He has weaknesses and strengths. He has deficits
and skills. People are always pointing out the
deficits. Please join me in noticing his skills.
Teachers. In our
meetings, please allow for some time
to recognize my child’s good
points. When you do, I go home walking
on air. When you don’t, I drive
home in tears.
SLP’s, OT’s and
PT’s. When your opening
statement is a positive remark about
my child, I begin to relax. When
you only voice concerns, my stomach
twists into knots.
Posted:
Thursday, Aug 16th, 2007 Cottage Grove Sentinel,
BY: Loren Goodman
Hello
Cottage Grove. My name is Loren Goodman! I would
like to mention another person with Autism here
in Cottage Grove....... myself! I am 38 years
old. My Autism is high functioning.
I
am annoyed at how certain society "cliques" treat
Autistics. We Autistics are like other "types" of
people. We have a disability. It may not be
as severe as others. We Autistics need to be
treated fairly by disabled and normal alike.
Are we not people too?
I
also wish that there was a support group for
the Autistic Individuals (not just the parents)
here in Cottage Grove. I may not be the only
one who wants a group like this here. A group
which accepts you as you are. A type of group
who does not make one person more important
than the others.
I
think that a group would be helpful here.. Because..
I have lived here for approximately six years
and I would like to become acquainted with other
high functioning Autistics like me.
Mary
Minn Sirag is a good person in my view. She
does great work where she lives... Eugene !
But... What about us Autistics here in Cottage
Grove? I applaud Joe Hansen for doing this two
part expose on Autism. (Read
Here...)
It
was a good thing for the Autistics to be highlighted
like this. Thank you for doing that. I hope
that you have started up the awareness of another
type of people which exist here. I am sure that
all of the people mentioned in the two-parter
appreciated it as well. I am including their
families and loved ones and friends too. Add
the readers too. I would also like to thank
Cottage Grove itself too. The reason is: our
town is a compassionate place to live.
Loren
Goodman, Cottage Grove
A mouse
trap, placed on top of your alarm clock, will
prevent you from rolling over and going back
to sleep after you hit the snooze button.
Parental
Surveys Boost Diagnosis Abilities of Doctors
Newswise — A simple questionnaire developed
at the University of Oregon and requiring no more
than 15 minutes of a parent’s time before
or after a doctor’s appointment is credited
with a 224-percent increase in referrals of year-old
and 2-year-old children with mild developmental
delays in a yearlong study.
Researchers found that on
doctors’ observations alone 53 of 78 referrals
for special services or additional monitoring
would not have been made without the Ages &
Stages Questionnaires (ASQ) filled out by parents
at home or in the office. Thirty-eight children
underwent further evaluation and qualified for
federally funded early intervention services,
and 44 others became eligible for additional monitoring.
The study appeared in the August issue of the
journal Pediatrics.
“Seeing the results
as a percentage was pretty shocking,” said
lead author Hollie Hix-Small, who this year earned
a doctorate from the Early Intervention Program
in the UO College of Education. She now is a UO
research associate and an independent early childhood
consultant.
The 224-percent jump in referrals
occurred despite just a 54 percent return rate
of the survey, which was given to 1,428 parents
or caregivers, and a 15 percent decrease in patient
volume in the newborn to 2-year-old range compared
to the control (no ASQ screening) year. Almost
certainly, the referral rate would have been higher
had more forms been completed, said co-author
Dr. Kevin Marks, a pediatrician at the PeaceHealth
Medical Group in Eugene.
“The study was about
making quality improvements in health-care delivery,”
Marks said. “We had intuitions that physicians
had difficulty identifying children with mild
developmental delays, especially in the fine motor,
problem-solving and personal-social domains. Physicians
focus mostly on milestones involving communication
and gross motor skills. The data shows that when
physicians suspect a delay, those children are
almost always eligible for early intervention
services, but, at the same time, we have our limited
powers of observation.”
Those limits, he added, often result from busy
offices, including tight scheduling and heavy
patient loads.
Autism
Retreat Feedback
Comments from this year's feedback forms.
· Enjoyed volunteering.
Learned so much. Thanks!
· Enjoyed cooking, meeting
new friends and camping.
· Karen, the cook, was great.
I suggest Friday
“meet and greet” for
AS adults. Enjoyed seeing people
have fun. Exceeding my expectations.
· I loved lifeguarding and
want to come back next year.
· Though I don’t face
as many autie hardships as many
others, I felt like I belonged
to this blessed community, unlike
during past retreats. This one
exceeded my expectations.
· Loved Raventones’ live
music.
· Loved Raventones.
· Loved Raventones.
· Loved talent show and
Raventones
· Nice venue for kids with
similar needs to network and share
interests. Helped to alleviate
camping stress.
· Loved fishing and canoeing
· Very nice people and volunteers.
Art table and stim toys were good.
Tell folks to bring their own tee-shirts
for tee-shirt painting. Wonderful
weekend!
· Loved swimming.
· Loved Saturday night campfire
and Raventones. Gets better every
year. Would love WiFi.
· Loved waterfront activities.
Can’t wait for next year’s
retreat.
· Loved karaoke and waterfront
activities.
Hilarious fun.
Mark
Your Calendar: Camp/Retreat
2008 August 22-24, 2008 See you
there...
Community
Calendar
October
15 - December 3, 6:30 p.m. – 9:00
p.m. 8 Consecutive
Mondays Visions for Tomorrow
A free educational class that offers a safe
and supportive place to share experiences and
learn from other family members who care for
children and adolescents (under 21) with mental
health challenges. Albertina-Kerr Centers Chapel
722 NE 162nd Avenue (between Halsey and Glisan)
Portland (Registration is required: 503-228-5692,
or email: jlacy@nami.org )
October 19th 8:00
am – 4:00 pm Understanding
And Helping Asperger’s Adults: Beyond Stereotypes at
the Lakewood Center for the Arts, 368 S. State
Street , Lake Oswego, Oregon. Families and professionals
are invited to attend the first professional level
training in Portland specifically regarding Asperger’s
Adults. For registration or more information contact
AMHA-OR by phone (503) 222-0332 or 1-888-706-9933
or online at www.amha-or.org.
October
21, 2 - 5PM, KindTree Mask Making Party, Cozmic
Pizza. Storm Troopers / Karaoke / Fun for
All.
October
24 - 25 Sparkplug Dance Outreach events:
Utah's Repertory Dance Theatre is here for
a series of outreach events, trainings and
performances. More
here...
October 25 Autism
Medical Information Support Group 7:00
pm - 9:00 pm Oregon Health & Science University,
Doernbecher Children's Hospital, 11th floor
Auditorium, Portland
November 7 ASO-LCC
membership meeting:
6:30-8pm, 4J Ed Center, N Monroe
November 7-9 Eugene,
Oregon - Roots
of Change: Preventing Sexual Violence Through
Partnerships and Action Conference
Information and Registration at www.oregonsatf.org/roots
November 12th Donna
Williams coming to Corvallis,
OregonOregon State University, Corvallis -
Cost: $30.00 (includes lunch). To register
visit the Corvallis School District website
at www.csd059j.net/index.html or contact Susan
Holmberg - 541-757-4441. November 13th Donna
Williams coming to Eugene,
OregonBridgeway House, 708 West 10th
Ave, Eugene, OR 97402 - Professionals,
Parents and Students are invited
to attend. Cost: $25.00. For more
information contact Pat Wigney at
541-345-0805. More info at www.bridgewayhouse.org
THANK YOU ALL!
A
BIG THANK YOU
to all our 2007 volunteers and donors
Sundance
Natural Foods
Market of Choice Stores
Bi-Mart
Albersons
Fred Meyer
Costco
Jerry's Home
Improvement
Monaco Coach
Eugene Freezer and Storage
Toby's Tofu Palace
Surata Soy
Organically Grown Co-op
Bagel SphereJerry's Home Improvement Centers
the Bread Stop
Trader Joe’s
Springfield Creamery
Emerald Valley Kitchen
Café Mam
Lochmead Dairy
Safeway
Costco
FreeLife International
ASOSpringfield Rotary
Eugene Downtown Lions ClubMonaco Coach Company
Randy Gerlach
Michael Omogrosso
T.R. Kelley and Randy Hamme
The Boy Scouts of America
Art Kennedy
Amy Smolek
Mary King
Beckie Smolek
Gary Cornelius
Dyan Campbell
Tim Mueller
GreyWolf Projects
Nel Applegate
Michelle Jones
Tyson Gunningham
Melissa Linville
Jeff and Sarah Fields
Nan, Dave, Oliver and Max Lester
Carlos Berrera
Mary-Minn Sirag
Jeanne-Marie Moore
Joel Litersky
Liz
Fox
Neil Lyda
Johanna Magner
Franklin Michael
Donald Burton
Caleb West
Thomas Finney
Jerry
Linville
Tracy
Rogan
Tiffany Lauvon
Steph Hyde
Sara Ridgefield
Claire Zane and Nate
Kieth Walker
Julie Hutchins
Erica Johnson
Robert Stacy
Rob Achmoody
Dave and Nancy Haverstock
Haley Mesnick
Shannon Jones-Jansen
Nancy McFerran
Paul Carlile
Elizabeth King
Emily and Ken Ross
The Wentworth Foundation
David Fuchs
Daniel Deming
Josh FraimJohn and Sandi Orbell
John RobertsRaven Frameworks
Ruth Madsen Ross
Lane Arts Council
Rep. Chris Edwards
Slug Queen Slugretha
Gordon Kaswell
Anna Morrison
Tony Diaz
Robert and Julie Pasley
James ForbesBecky BeachDave Gorty
Mary-Minn’s Mom
Doris GermainMichelle Saxton
David Walcutt
GreyWolf
Projects
CenterStage
Karaoke
Cloud City GarrisonMaude Kerns Art Center
DIVA
KindTree’s mission statement charges us to “Serve
and Celebrate the Autism Community through Art, Education
and Recreation.” This issue has it all.
Featured in these pages are writings by a number of people
on the spectrum. They speak here to educate the community
about who people with autism are. Good reading.
Our Art Program celebrates artists with autism, with
our “Autism Artism
2007” on display at DIVA in downtown Eugene
through June, then again in late July at the Full City
Coffee outlet on Pearl Street. We will also again be participating
in the Art & the Vineyard
event July 6 - 8. This program has come a long way since
its opening in 1997. Please consider supporting these
artists with a pledge - scroll to the bottom of the page
and click "donate".
Here you will find the registration form for our annual
Camp/Retreat. This unique
event continues to thrive, with fun and warmth for all.
Scholarships are available this year, thanks to the Springfield
Rotary, the Eugene Downtown Lions Club, the ASO, Bridgeway
House and others. Applications
are here. Please join us at this special event.
While our first Retreat was in 1996, we were officially
granted non-profit status in 1997, making 2007 KindTree
Productions, Inc’s official 10 year anniversary.
KindTree continues to be a grassroots group, all volunteers,
with a very hard working Board of Directors, and an ever
growing group of caring and generous volunteers. While
some old timers like myself and Michelle are still here,
we depend on new faces and energy to keep the spirit of
shared community alive. An attitude of acceptance, inclusion,
and respect continue to drive all we do. Thank you for
being part of it. Why don’t you celebrate with us?
Buy an anniversary T-shirt. Available very soon on the
website. Very Cool.
Recent data indicates that the diagnosis rate of autism
is now at 1 in 91 school kids in Lane County. This year,
the Oregon legislature is beginning to respond. There
is a great bill championed by Eugene’s Chris Edwards
highlighted on page 5 regarding insurance parity. There
is also Senate Bill 766-A. This bill is about housing
and supports for our adult children to live in the housing
that is built. It will form a working group that will
include the housing authority, and DHS and others. Then
there is HB 5019, which is currently before the Joint
Ways and Means Subcommittee on Education, would give the
Regional Programs $5.6 million less than they had in 1999-2001
despite the fact that their autism caseload has more than
doubled since then. Wrong response, folks. Please don’t
hesitate to share your point of view with your elected
representatives.
If we don’t do it, who will?
Tim Mueller
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Mary-Minn's
Stim Page
(Here are personal stories
about autism. If you would like to see your musings on
this page, please email Mary-Minn at sirag@mindspring.com.)
On stuff, and stuff by Mary-Minn
Sirag
This summer has become a spring-cleaning
season for me. This is the first time I’ve systematically
cleaned and organized my stuff since we moved to this
house in February, 1991. And, “it ain’t over
‘til it’s over,” to quote catcher Yogi
Berra. Or, as Robert Frost said (about life, rather than
housecleaning, of course), there are still “miles
to go before I sleep” on this particular endeavor.
My usual house-cleaning pattern is to blitz through just
enough to take the addlepated edge off, after which point
I almost inevitably become overwhelmed by the monumental
remainder of the task; fall off my wagon of joy through
self discipline; and shrivel back beneath my domestic
mayhem.
Once my house is neat enough for me
to find things more than occasionally–and without
the attentive help of my seeing-eye-brain-husband–I
am rewarded briefly with a short exuberance of artistic
creativity, which is more about joy than a competent by-product.
Still, I hanker after this transient state, of which I
am every bit as capable of as my quagmires of deep depression
and inchoate despair.
“I live in constant dread of a full-bore freakout,
an ugly spectacle replete with blood-curdling shrieks,
vile cursings and self-injury, which is none other than
a culmination of triggers activated.”
In May, I went back to Iowa to help my mother care for
my aging father. Toward the end of my visit, my mother
got him placed in what we hope is a short-term stint in
a nursing home, which terrified all of us, though the
care he needed was beyond the ability of the two of us,
let alone just her.
I had left for Iowa despondently skeptical
that I could be of any help, since my mother and I share
an extreme difficulty with keeping track of physical objects
or places. For years I had been blaming my autism for
what I have dubbed “parts missing” in my brain.
“Parts missing” is an expression of tragic
sorrow for me, the scarecrow in my favorite fairy tale,
the Wizard of Oz.
I was surprised at how easily I was
able to find things in my parents’ house, how visual
my memory had become. My sister, who had just left, had
organized much of the house such that I could logic my
way through so many things that my short-term spatial
memory was freed up for true anomalies that genuinely
defy the parameters of spacetime. Though there was always
too much to do even mediocrely, my brain was working astoundingly
well. For the first time in years, I actually was able
to think straight during much of our ordeal.
I marveled at my new brain on loan,
and wondered how I could keep this good thing going with
my brain. I had plenty of time to think, as I sat with
my father, who was too short of breath from congestive
heart disease and too depressed to talk. Being present
while being quiet has always been a Zen challenge for
very western Judeo-Christian me. I sat there for hours
in his hot and closed room, just “being” and
trying to radiate love to my father. My mind is too hyperactive
for meditation, which I have tried more than once but
stopped because the contemplation of nothingness does
nothing but make me depressed. I sublimated some of my
mental static cling by making drawings of him (with his
permission); still, I felt all too alone with my own looming
thoughts. Even my normally voluble mother was too exhausted
and overwhelmed to talk, and there was no time for me
to socialize with my college buddy still living in town.
Toward the end of my visit, the solitude
finally illumined me as to why my brain was working, in
spite of the stress and sadness. For the first time in
a long while, I was not in charge of the situation, but
just a helper. I have a genuine phobia of being in charge,
especially of a dynamic and life-threatening situation
with social-cognitive undertones. (I have to organize
events, such as KindTree’s autism retreat, in such
a way that I don’t have to think in real-time during
the event, because my real-time problem-solving skills
are often choked by highest anxiety. The minute guests
start appearing at the retreat, I go from being one of
the firsts in command to being the harmless drudge of
my deepest mental recesses.)
The second aspect of my newly working
brain was the organizational job that my sister had left
me with. The house was neat enough for me to see the trees
for the forest and vice-versa. My brain cannot short out
on visual chaos. Conversely, my brain has a hard time
thinking its way out of the proverbial paper bag when
my physical surroundings are chaotic, so my part of our
house tends to be chaotic, leading to an upwardly spiraling
Catch 22 of confusion and freakout.
On the seemingly interminable flight home, I got to thinking
about how astonishingly well my brain had worked, and
how I could duplicate this success in my daily life at
home. I remembered my freakout triggers, which I had figured
out with my supervisor’s stalwart help. These triggers
– namely, getting lost and losing things –
arise from a deep sense of personal incompetence, addlepation
and overall loss of control. I live in constant dread
of a full-bore freakout, an ugly spectacle replete with
blood-curdling shrieks, vile cursings and self-injury,
which is none other than a culmination of triggers activated.
Behavior plans are my latest infatuation.
I’ve always been a sucker of analytic systems with
big names invented by me, though somebody else invented
this system and its vernacular. The hardest part of drafting
a behavior plan is fully admitting one’s helplessness
toward certain weaknesses and triggers, and I had done
that – with my supervisor, no less. All I had to
do was implement the plan.
Behavior: Vile cursings, self-injury,
blood curdling shrieks, black-out state. Antecedent: Losing
things and getting lost and confused. Remedy: To rid myself
of super-superfluous possessions that choke precious access
to my relatively few essential tools and treasures.
In bitterness, I keep on reminding myself
that a lost possession no longer belongs to me, but rather
only serves to fuel some larger destructive force of untamable
chaos; that I actually own nothing, but spend my life
stewarding miscellaneous animate and inanimate other selves,
in hopes of entering into a mutually beneficial partnership,
rather than the one-sided slavery I’ve been enduring.
There is little that is more magical
than getting rid of things of which one loves as sentimental
idylls but can no longer use. Whenever I give away things
I have loved, even lovelier – and more practical
– things rush in to fill the happy void like my
cat quick-silvering back into the house from the inclement
outdoors.
This time was quite spectacular. The
day after I had given away 10 boxes of clothes, my close
friend gave me table linens, Willow Ware china, yard sculpture,
vases, rugs, many pieces of solid and tasteful furniture,
in contrast to our junkyard furniture.
Our house is not quite yet discernibly
neater – let alone neat – but I already am
starting to feel the zephyr breeze of empty mind blowing
gentle and peaceful into our neater and cleaner house.
I’m already drawing and painting more. Wish me luck
on actually taming my house.
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How
early do we internalize ableism?
by ballastexistenz
When I was in grade school, there was a girl my age who
talked in a loud, nasal voice with highly unusual intonation.
She chewed on things that were definitely not food. She
could get so absorbed in a book that the only way to get
her attention was to move the book or put things on top
of it. She did not get along with much of anyone socially.
She had loud meltdowns and cried a lot when things went
wrong, but she wasn’t spoiled or anything, she was
clearly overloaded. Her name and mine were often said
together by the other children (along with maybe two other
names) as if we had something in common.
I don’t know
if she was autistic or not, although it’s certainly
my first thought. She definitely wasn’t a typical
kid of our age. I vaguely remember her mother having told
my mother something about “Jessica’s problems”
and her theories about why they existed.
You would think,
given all that Jessica and I had in common, we would have
liked each other. In reality, she might have liked me.
I did not like her.
I did not like her
because every time I saw the lack of modulation in her
voice, I heard my own unmodulated monotone flung back
in my face.
I did not like her
because I could see that she got overloaded the same way
I did, and I saw overload as a horrible flaw on my part,
and did not want to see how it looked on anyone else.
I did not like her
because I could read her body language, and her emotions
seemed the same kind of raw that mine always were.
I did not like her
because she lacked the emotional self-control that I also
lacked and hated myself for lacking.
I did not like her
because every time I saw her, it was like looking in a
mirror. I hated to know what I looked like. Bullies and
teachers had made it very clear to me which of my traits
were desirable and which were not. Every time I saw myself
I saw all those undesirable traits to my disgust and shame.
And that is what happened when I saw Jessica. It wasn’t
as much that I didn’t like her. I never got to know
her very well. It’s that her presence made me profoundly
uncomfortable with myself and reflected back and amplified
every bit of self-hatred I experienced on a daily basis.
I experienced her presence as pain.
Dave Hingsburger
has told stories of a woman with, if I remember correctly,
Williams syndrome, which tends to come with a certain
shape of face. If she saw another person with Williams
syndrome, or saw her face in a reflective surface, she
would try to pummel her own face into unrecognizability.
I understand why
she did this. I shouldn’t understand it —
nobody should — but I do. I know what it is like
to learn young that you are disgusting, defective, freakish,
and shameful. I know what it is like to experience the
presence of a person who shares your “defective”
traits, not as someone who understands you, but as someone
who brings all your self-hatred to the forefront.
What I want to know
is why we live in a society that teaches so many disabled
kids this lesson so young. I’m not the only person
I’ve heard of who had similar experiences as a child,
by far. As a child, I should have perceived this girl
and others I met like her as people I could understand
more easily and maybe even, if we got along well in other
ways, make friends with. As it was, I don’t think
I was particularly unfriendly to her, but I don’t
think I was friendly either. And I certainly was terrified
of her and every sight of her made me ashamed and disgusted
with myself.
Ableism (even on
the individual rather than systemic level) doesn’t
just affect how non-disabled people treat disabled people.
It affects how disabled people think about ourselves,
and about other disabled people. I don’t think it’s
a coincidence that there are hierarchies in the disability
community (more like communities, since there are more
than one). People who are seen as better and worse. Terror
of being associated with the wrong kinds of disabled people.
I have been in all
parts of those hierarchies in different communities. I
have been considered the most severely disabled (and hence
for some reason undesirable) person in certain institutions.
I have been put into the “top” academic class
in special education (where they taught things I already
knew how to do) and had people bewildered that my best
friend was someone from the “bottom” one (where
they were taught things I still don’t know how to
do). I have been only able to sit in one spot and drool,
and I have been told by professionals that I “could
do better” than day programs that had people who
drooled in them. I have been seen in various places as
the weirdest, the most normal, and everything in between,
and I’ve had different status assigned to me for
each of those things depending on whether weirdness or
normalcy is more valued. I’ve played along with
these hierarchies, and resisted them, at different points
in my life, and in different ways.
And I’m convinced
a lot of the hierarchies come from this same internalization
of all the ableist values we’re force-fed day in
and day out.
I have also grown
up being told that who I am is so deeply wrong that by
a very young age I had already acquired a revulsion towards
