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 Letter from the director
 Interesting places to visit on...
 High school success stories
 Sibshop
 Announcements














Title: PostCARD
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Permanent Link: http://ufdc.ufl.edu/UF00087039/00010
 Material Information
Title: PostCARD
Series Title: PostCARD
Physical Description: Serial
Creator: Center for Autism & Related Disabilities, University of Florida
Publisher: Center for Autism & Related Disabilities
Publication Date: Spring 2004
 Record Information
Bibliographic ID: UF00087039
Volume ID: VID00010
Source Institution: University of Florida
Rights Management: All rights reserved by the source institution and holding location.

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Table of Contents
    Letter from the director
        Page 1
    Interesting places to visit on the web
        Page 2
    High school success stories
        Page 3
        Page 4
    Sibshop
        Page 5
    Announcements
        Page 6
Full Text




The Post CARD


CARD UF/Gainesville Staff
Ralph Maurer, Executive Director
Greg Valcante, Director
Art Wallen, Associate Director
Donna Gilles, Associate Director
Robbin Byrd, Coord. for Educ./Training Programs
Jennifer Flanagan, Coord. for Educ./Training Programs
Cathy Zenko, Coord. for Educ./Training Programs
Ann-Marie Orlando, Coord. for Educ./Training Programs
Caroline Raye, Community Srvcs Coord.
Margie Garlin, Program Assistant
Leannis Maxwell, Program Assistant
Kathy Robinson, Visual Supports Specialist
Karin Marsh, Volunteer Sibshop Coordinator
Carole Polefko, Public Education Coordinator
Kurt Clopton, Computer Consultant
Lisa Petransky, Student Assistant


Parent Partners
Wendy Baugh, Marion County
Pam Beville, Citrus County
Cheryl Brenner, Putnam County
Sylvia Miller, Marion County
Amparo Perales, Marion County


Constituency Board
Julia Arthur, Vice-Chair
Sherry Dupree
Pat Hawk
Suz Letzig
Ruth Lowery
Diana Mathews
Bobbi Okesson
Martin Rifkin, Chair
Shelly Voelker


Contact Information
CARD UF/Gainesville
PO BOX 100234
Gainesville, FL 32610-0234
352/846-3455 or 800/754-5891
352/846-0941 (fax)
www.card.ufl.edu


Spring 2004


Dear Families and Friends of CARD,
I hope you enjoy our spring PostCARD. We have
included some great information on resources available
via the internet, two inspiring stories about constituents
who have just graduated from high school, and a Sibshop
update. As always, we encourage you to keep us in-
formed of events in your communities and keep our news-
letter in mind for stories that may be of interest to all our
readers. Because of our engagement with Autism Aware-
ness Month activities in April and, of course, maternity
leaves, it has taken longer for us to complete this newslet-
ter than we had hoped. We celebrated Autism Awareness
Month by hosting a "thank you" luncheon for our donors
and supporters. We also placed nearly 350 posters around
our region, and distributed autism awareness flyers at local
grocery stores and businesses. CARD staff members and
Parent Partners had t-shirts made promoting autism and
the UF CARD. There has been so much demand for the
shirts that we are planning to make them available for sale
through our office. Watch for more information on this in
our next PostCARD.
This spring and summer bring additional personnel
changes to our office. Jennifer Flanagan is returning from
maternity leave, Cathy Zenko welcomed her new son,
Spencer, on May 5th and will hopefully be back with us
sometime this summer. Carole Polefko, our newsletter
editor, should be delivering her 4th child by the time you
receive this PostCARD. When Cathy returns, Caroline Raye
will be retiring in preparation for the birth of her second
child. We will all miss her.
All of us here at CARD are most grateful for the
support of our families and friends. Please do not hesitate
to let us know whenever you have creative thoughts about
how we may be of service. We hope you have a great
summer. Sincerely,






Page 2
Interesting Places to Visit on the Web
Page 3-4
High School Success Stories
Page 5
What are Sibshops?
Sibshop Update
Page 6
Announcements


A Publication of the Center for Autism and Related Disabilities
at the University of Florida Gainesville





I Pae to s it o t W eb
by CaoleO 0oek


UF Health Science Center's
The Post
Article about Dr. William Luttge
http://news.health.ufl.edu/post.shtml
(Click on January 2004 Edition)

Learn more about Dr. Luttge who recently
retired from his position as the Executive
Director, of the McKnight Brain Institute of
the University of Florida. Dr. Luttge was an
important person in the development of
CARD UF/Gainesville.


L.I.N.K.S.
Conference and Training Financial
Assistance Fund
www.fndfl.org/LIN KShome.htm

Self-advocates and/or family members
can learn more about how to apply for
stipends of $600.00 for an instate or
$1,200.00 for an out of state conference.


USF CARD's
Web Based Training Modules
http://card-usf.fmhi.usf.edu/visum.asp

Free to Florida residents, modules are
intended to provide information
about four steps in a positive
behavior support process


On-Line Newsletter
from Future Horizons
www.autismspectrum.net

Links to recent stories about autism
from various news sources,
inspirational stories, featured artist
of the month


Temple Grandin's
New Website
www.templegrandin.com

View Ms. Grandin's schedule of
speaking engagements, learn
more about her books and
videos, and read her latest install-
ment of Autism The Way I See It.


Dan Marino's ChildNett.tv
www.childnett.tv

The mission of Childnett.tv is to reach out globally to families, clinicians and
educators, connecting them through the internet, to information related to
autism and other neurological disorders
Established in 2003, Childnett.tv is an internet access web channel that
broadcasts interactive programming 24/7 via the internet. Our lineup includes
streaming video related to autism and other neurological disorders.
Families, clinicians and educators can witness the latest therapies and treat-
ments, seminars, as well as personal stories all for free. The Dan Marino Foun-
dation is funding Childnett.tv, to improve the lives of families around the
world. It is our hope the information you see will help ensure every child with
developmental disabilities reaches his or her highest potential.


r









ORIGINALLY PRINTED IN
The Palatka Daily News 4/14/2004
http://www.palatkadailynews.com/pages/04142004/odds.html

Michael Bass, 17, loves high school.
The senior at Interlachen High is on the senior executive board and is
in the National Honor Society. He is also involved in the drama club,
wanting to audition for the role of Theseus in A Midsummer Night's
Dream.
His intelligence is evident. According to school officials, Bass takes
honors courses and is in the gifted program. He an honor student,
making all "A's" on his last report card, said his mother, Bobbi Okesson.
He is ranked 35th in his graduating class of 175, putting him in the
upper 20 percent of Interlachen seniors.
It is enough to make any family proud, but what makes each success
sweeter is the uphill battle he has fought to reach this point.
He is autistic.
In the 10 years since his diagnosis, Bass has done what many thought
he could not: attend mainstream classes and graduate from "regular"
school.
"No one thought Michael would have a successful future," said Okesson. "They said, 'Don't hope for
that."'
Okesson knows how far her son has come. At age 3, he could not hold a conversation. He would
read the labels on cards and children's books out loud, but not talk to people. "He would grunt
and point like a 1-year-old when he wanted something," she said. Okesson began taking him to a
round of doctors who gave different diagnoses for what was troubling her son typical for those
suffering with autism, according to Cheryl Brenner, a representative for The Parent/Partner Center
for Autism and Related Disabilities at the University of Florida.
Autism is not always recognized, said Brenner. The disability is exhibited by such a variety of symp-
toms that other diagnoses such as hearing loss, speech problems, mental retardation and neuro-
logical problems must be ruled out first.
Bass was first diagnosed with obsessive-compulsive disorder, which he still has, and Tourette's syn-
drome a misdiagnosis because of some facial and arm tics, said Okesson. He was diagnosed with
autism at age 7, when he was seen by a specialist. It was a relief, said his mother, to finally get a
diagnosis and be able to move on to helping him.
Bass has had to struggle for acceptance in a "normal" world, which for those with autism can be a
challenge.
His directness is disconcerting. He answers questions literally and factually with little expression, a
trait that is perhaps at odds with his expressed future goals.
"I may major in acting or television production," Bass said. "I have a lot of interest in entertainment."
Noises bother him and he still has some panic attacks, but he has learned to cope with everyday
situations, according to Okesson.
"He is hypersensitive to sound. He used to have a panic attack at fire drills," she said. "The sound still
bothers him, but he can cope."
It is an understatement if you knew his past behavior, according to Okesson.
"The Michael you see now is very different from what he was," she said. "There has been huge
growth. He is self-motivated and wants to succeed."
The changes began, when in fifth grade, Bass was mainstreamed into regular classes, said
Okesson, a process that took her five years of presenting his case to school officials.
"We had to prove he could handle it," she said.
It was not easy, because Bass's behavior in exceptional education was not always understand-
able.
(continued on next page)









UF CARD/Gainesville would like to congratulate Josiah Doran, a constituent who was diagnosed
with Asperger Syndrome at the age of nine. Josiah graduated from Bronson High School this May
with straight "A"s and was included on the Principal's List. In addition to excelling academically,
Josiah also participated in a school based vocational training program. Due to his diligent work
he received the "Employee of the Year" award. His father reports that Mr. Al, the head custodian,
at Bronson High School, enjoyed having Josiah work for him because "he always knew exactly
what to do". Due to this training opportunity Josiah has decided that he would like to pursue a job
as a high school custodian. He plans to look into the local vocational training program and possi-
bly assisted living.

But life at Bronson High School was not all school work and job training. Josiah also participated in
the fun school activities. He took his girlfriend to Senior Prom and Grad Night at Disney World.
Congratulations, Josiah, and good luck in pursuing your career!

(Beating All Odds continued)
"When he was in ESE, he would scream all day and not sleep at night," she said. "He would also be
self-abusive, biting his hands."
According to Okesson, it was the ESE environment that affected his behavior.
"We knew he was extremely intelligent," she said. "We found a teacher, Ms. Boyette, who was will-
ing to work with him."
The year was a turning point. Bass won his school's spelling bee and was selected as Putnam
County's "Dreamer and Doer."
High school has not been a challenge intellectually, but perhaps socially. While Bass said he has
"made good friends," they are not exactly friends in the same sense as others mean it.
"He is not invited to sleepovers or the movies," Okesson said, "but everyone knows who he is. I hope
when he becomes an adult, he will become a friend to someone."
Bass' maturity level is equal to a 12-year-old's, said his mother.
"He makes a lot of faux pas," said Okesson. "He's still learning common sense."
His disability places him apart from his peers a realization that bothers him, said Okesson. He
wants to fit in, she said.
Part of Bass' autism and OCD is that he finds comfort in keeping things in order, like lists. He keeps
lists of household rules on his bedroom wall. He also believes in absolute chronology of events -
such as girlfriends, college, marriage and so on. It is an issue that is hard for him to understand, his
mother said, when things don't happen in that order for him. It is part of the autistic psyche that is
hard to grasp.
He does not drive, nor hold a part-time job, as many teens do. It is a coming-of-age ritual that right
now is beyond him. Okesson does not see it as impossible, however. She wants independence for
her son.
"I want him to have a life of his own a house, a job, a car," she said.
"I agree, that's what I want," Bass interjected. "Work is something I must do."
Thomas Boiling, assistant principal at IHS, sees Bass as an asset to the student body.
"He's a good all-around kid," he said. "I wish we had 800 more like him. He is always willing to do
whatever is asked of him. He is a joy to have here."
Bass' plans may take him to St. Johns River Community College at first. He hasn't totally decided
what to do.
There is time, his mother said. The future remains unwritten.
"I just think it will take longer for Michael," she said. "He writes his own book, so to speak."
It has not been a bed of roses, Okesson said, but there are sweet moments that she records in a
diary.
"I still remember the day when he said he loved me and meant it," she said. "He was 7. Each thing is
so special."
Bass has brought his family a different view on life.
"As a family, we are close-knit and tolerant," said Okesson. "I think we also laugh more than most -
you have to. You've got to appreciate what you have."









As the academic year ends and the summer approaches,
I thought it would be a good time to reintroduce the
concept of sibshops.

What Are Sibshops?
Sibshops offer brothers and sisters the opportunity to meet
other siblings of people with special needs, share common joys
and concerns, and learn more about the implications of their
siblings' disability-in a lively, recreational setting.
At a sibshop brothers and sisters of children with disabilities
have a chance to meet and talk with other kids whose brothers
and sisters have special needs. They have an opportunity to talk
about the good stuff and not-so-good parts of having a sibling
with a disability.
Brothers and sisters may have feelings that are difficult to
express, even to a friend: sadness that a sister is unable to learn
things that others take for granted, anger when a brother's
problem behavior prevents the family from doing things other
families do, or the special pride when a sibling with a disability
learns a basic but important life skill after months or years of
practice. At Sibshops, siblings will share these feelings with others
who truly understand.
Most important, Sibshops are fun! Participants play new
games, eat lunches, and make new friends!




Sibshop Update
Our last sibshop was on 2/28 at the YMCA Camp
McConnell. All who attended had a "swinging" good
time! We all challenged ourselves on an amazing ropes
course. We were then able to reflect on the challenges
and rewards of conducting the course and of being a
sibling.
CARD has been offering these workshops for the
past several years. We feel that it is very important to
acknowledge the sibling role and honor them. However,
the attendance at these workshops has been dwindling.
Unfortunately our sibshop scheduled in May for 5-8 year
olds was canceled due to a poor response.
In order to continue these events, we need your
help. How can we increase interest and attendance? All
suggestions and input are valued and would be greatly
appreciated. Please email your thoughts to
kandlmarsh@earthlink.net. We need to work together to
celebrate our brothers and sisters!
Thank you-
Karin Marsh, Sibshop Coordinator








The City of Gainesville's Department of Parks and Recreation is offering an
Adapted Aquatics Program this summer for children and adults
who could benefit from small group instruction.
30 minutes sessions
f Mondays and Wednesdays / 9 11 AM
S Beginning May 17
| Northeast Pool Facility in Gainesville
Maximum 3 participants to 1 instructor
Cost is $12 for 4 sessions
(This covers the pool use only. Trained volunteers from local schools
and the University of Florida will be instructing)
There are no age or weight restrictions and individuals with
ASD are welcome!
(Also, individuals from outside the Gainesville area are welcome)
NOTE: The time reserved is the slowest time for the pool, before it is open to the general public.
A great opportunity for individuals who may be easily overstimulated to come enjoy the water!
Please contact lan Dyar to register for sessions or to get more information.
352/334-5067


Waned


Hello Everyone,


I hope your summers are a fun and enjoyable experience.
Some families have asked us to start a book exchange pro-
gram at the CARD office in Gainesville. Once you have do-
nated books you would be free to take used books home. If
you would like to donate your used books that you feel would
help another family please contact me.


Robbin Byrd
byrd@mbi.ufl.edu
352/846-3700
800/754-5891 ext.6


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