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Title: PostCARD
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Permanent Link: http://ufdc.ufl.edu/UF00087039/00018
 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: Fall 2007
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Bibliographic ID: UF00087039
Volume ID: VID00018
Source Institution: University of Florida
Rights Management: All rights reserved by the source institution and holding location.

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Table of Contents
    Director's note
        Page 1
    Support
        Page 2
    Resources
        Page 3
        Page 4
        Page 5
    Training news
        Page 6
Full Text












CA R D center for autism &
Related disabilities
UNIVERSITY OF FLORIDA/GAINESVILLE


Director's Note

Dear Families and Friends of CARD,

The new school year is upon us and the
CARD staff at the University of Florida
are working hard to keep up with the
many calls from families and schools
that are coming in each day. Sadly, we
are in a position of responding with
fewer staff for more constituents. This
summer saw the departure of two of our
cherished staff members, Donna Gilles
and Kirsty McIver.

In July, Kirsty left for Baltimore, Mary-
land since her husband graduated from
the doctoral program in Psychology at
UF and accepted a position at Johns
Hopkins University. Kirsty was a great
help to our families, schools and staff
for the past two years and we miss her
already. Following Kirsty North, Donna
Gilles, who was an Associate Director at
CARD for 13 years has accepted a posi-
tion as Associate Director at the Virginia
Commenwealth University Center for
Excellence in Developmental Disabilities
in Richmond. Donna is still serving as
a consultant to the Florida Outreach
Project for Students who are Deaf-Blind
so we hope to see her back in Gainesville
occasionally. Unfortunately, due to bud-
get cuts already received and projected,
we will not be able to hire additional
staff to take their positions at this time.
We hope that the budget situation
improves in the future. Nevertheless, if


you or your family was helped by Kirsty
or Donna in the past, don't hesitate to
contact us if you need assistance and we
will do our best to have another staff
member available for you.

The 15th Annual CARD Conference
will be held at the Lake Mary Mariott
(Orlando area) this year on January 26-
27, 2008. There is also a free pre-con-
ference day for teachers and adult service
providers on Friday January 25th. The
pre-conference will feature Dr. Karen
Erickson from the University of North
Carolina who will speak on Literacy for
persons with autism and related disabili-
ties. The afternoon will highlight teach-
ers who have partnered with CARD staff
presenting on their accomplishments.
Conference speakers will include Dr.
Ami Klin from Yale University speaking
on his eye tracking research, and Drs.
Lynn and Bob Koegel from the Uni-
versity of Califormia at Santa Barbara
who will speak on addressing behavior
problems in the home.
Additionally, Dr. Pat Rogan from Indi-
ana University (past president, National
Association for Persons in Supported
Employment) will speak on family is-
sues, Dr. Peter Szatmari from Canada
will present his Genetic research and Dr.
Maria Bove from Vermont will present a
keynote address on learning styles.

Please be sure to keep our Sibshops in
mind if you are a parent or guardian
and your child with autism or related


CARD Office Hours

The CARD office located at 1405 NW
13th Street in Gainesville is "closed" until
12 PM on Mondays for staff meetings.
Computers for making visual supports are
available during normal business hours
on Tuesday to Friday and after noon on
Monday. For an appointment please call
Kathy Robinson at 352 392-4171 or 800
754-5891 ext. 9.




CARD Website

Go to www.card.ufl.edu for information
about:
current news about autism &
related disabilities
support groups
professional development
fact sheets
past issues of the PostCARD
CARD conference information
and more!

disability has brothers or sisters who
could participate. There is more infor-
mation in this newsletter and you can
always contact Melinda Morrison, our
new Sibshop Coordinator, if you have
questions.

Sincerely,
Greg Valcante






The PostCARD 2
AY-rn


www.card.ufl.edu


Sibshop Update
Who/What: A program especially for children whose brother or sister has a disability
Where: Gainesville, Ocala, Brooksville, Palatka
Why: Sibshops are a series of games and fun activities that allow kids to meet others
who experience some of the same family issues and to communicate about their experi-
ences and feelings in a supportive environment

For more information and to register please call Kevi at 352 273-0581 or
800 754-5891 ext 0


Parent Partner Program

The official diagnosis and "label" was given to my oldest son just
two short days before we moved from Queens, New York to the
Ocala area for the first time. It was almost ten years ago and he had
just turned three years old. That evaluation team directed me to
CARD and I called the moment we landed.

I was greeted by a warm, friendly voice, that of Margie Garlin, who
was extremely patient with me. She had a genuine understanding
and sensitivity to my stress, a wealth of knowledge much needed by
the mom of a newly diagnosed three-year old (which I was), and a
sense of humor. (I really needed someone who could turn my tears
into laughter and get me to see the lighter side of life when things
seemed so grim.) Being the parent of a child living with autism
that was older than mine, she was able to help me decide what I
needed to do next. I was alone and new to the area, so she directed
me to where I needed to go to get those things done. I received
a packet of information from her in the mail that included much
needed information on autism (since I knew less than nothing) as
well as a list of area resources (that included doctors, therapists,
school district, etc.). Then, a short while later, an appointment was
scheduled with an assistant director, to see how our family could be
helped. A few visits with my family, especially my son, led to my
being taught about visual strategies for the home, ways to decide
what I needed and how to make the visuals myself. In addition, I
was given some simple pointers on teaching appropriate behaviors,
and daily living skills, and was shown ways to involve him in family
activities through interactive play. Finally, realizing the need for
parental support, I was put in touch with a local support group,
but when they turned out to be parents of adult children, I was
introduced to one of the few parents of younger children living in
my area, and that mom and I took that emotional journey together
one day at a time.

It's been more than ten years and another diagnosed son since my
experience began, and the number of children living with autism in
our area has grown considerably. So it goes without saying that


the need for more help has also increased, and with it, the need for
more "Margies". In an effort to meet that need as well as extend
CARD's reach directly into the community it serves while getting
help to the families in the shortest amount of time, the Parent
Partner Program was introduced a little over three years ago. I am
privileged to have been a part of the program from the beginning,
giving to others what Margie gave to me. Sylvia Miller


Book Review
Reasonable People: A Memoir of Autism & Adoption On the Meaning
of Family and the Politics N....... i.. ,.: i Difference
Author: Ralph James Savarese
The story is about DJ, a child that was, as the author puts it, "written off
as profoundly retarded". A child abused, non-verbal with autism and in
Foster Care in Gainesville, Florida. With the unconditional love of the
author and his wife, DJ is not only saved, he is triumphant!
The author kept meticulous details about DJ's experiences and struggles as
he progressed into a functional and successful teen able to communicate.
There is even a chapter in the book written by DJ!
The book covers their experience with Florida Foster Care, issues of Adop-
tion, Special Education, Regular Education, Facilitated Communication
(FC), Trauma and Autism.
In the introduction, the author expressed a thought that has lingered in my
mind: "If DJ, a "classic" case ofhopelessness, can achieve, how many other kids
might as well? "
Now when I am teaching my own children with disabilities, and I get frus-
trated and ready to throw in the towel I try to remember that. The best
lesson that I got from reading this book is Hope! Amparo Perales







Ralph Emily, and DJ
Sa\ areis sign copies
of K. unable People in
cGaincis ille this past
pr'ng






The PostCARD 3


The ABA Corner
Many constituents of the UF/CARD ask for information about Ap-
plied Behavior Analysis (ABA) and this section of the POSTCARD
has been reserved for discussion of applications to autism and
related disability issues. An initial plan is to share brief information
about current therapies, assessment techniques, consumer informa-
tion, and current events of interest to CARD constituents in the
area of ABA and Behavioral Support. In addition, we would like to
encourage readers to submit requests for information that we will
do our very best to answer. Topics can include the full spectrum of
Applied Behavior Analysis applications to the needs of individuals
with autism and related disabilities; from principles and methods
that make up ABA, to discussion of issues in the area of ethics and
values, interviews with clinicians and researchers about autism and
related disabilities, how to access ABA services and consumer infor-
mation, as well as sharing information hot off the research presses.

For our first appearance I would like to preview some of the topics
that are on tap for upcoming installments of The ABA Corner. In
our next issue, we will cover the area of motivation; creating learn-
ing circumstances for individuals that are fun, positive, and growth
oriented. Subsequently, given the widespread interest in the Early
Intensive Behavioral Intervention model of early intervention we
will spend some time describing where it came from and what it
is. Other topics that have been suggested include Applied Behavior
Analysis approaches to language development, social skills, "au-
tism"-specific treatments such as teaching joint attention, educa-
tion, and challenging behavior supports. We look forward to your
submissions and will keep you posted on upcoming developments.
And remember, CATCH'EM BEING GOOD! Please address
submissions to me.
Art Wallen


Research Opportunities
Family Training Research Project
Volunteers are needed for an intervention study for children with
autism and their parents. The purpose of the study is to help
fathers of children with autism learn to interact with their children
during play sessions. Fathers will also learn how to train mothers to
use the same interventions. The study is done in your home. This
study is funded by the National Institutes of Health and approved
by the Institutional Review Board of the University of Florida
Health Sciences Center. For more information you can contact the
Principal Investigator, Jennifer Elder, R.N., Ph.D,
Associate Professor, College of Nursing 352 273-6359.

Study of Autism and Severe Behavioral Problems
As many as 1.5 million Americans today are believed to have some
form of autism, and this number is on the rise. Dr. Tanya Murphy
and the University of Florida are conducting an investigational
research study in children and adolescents 6-17 years of age with
Autism and severe behavioral problems, such as tantrums, aggres-
sion and self-injurious behavior. All study related procedures are
provided at no cost to you. Please contact Dr. Jane Mutch at
352 392-7855 for more information.

Study to Indentify Contributing Genetic Factors for ASD
Are you a parent of the child who has Autism Spectrum Disorder
(ASD)? Are both biological parents available to participate in the
study? If so, please help us to identify contributing genetic factors
for ASD. During the study, the child will receive a comprehensive
evaluation for the developmental, adaptive and cognitive function
and behavioral characteristics. We will collect blood samples from
each member of the family (biological mother, biological father,
and the child) for genetic study. Feedback will be provided to the
family summarizing the results of evaluation at the end of study
participation. For more information please contact Soo-Jeong Kim,
MD-Principal Investigator, Department of Psychiatry, University of
Florida at 352 392-7322 or soojkim@ufl.edu.






www.card.ufl.edu


Save the Date! 15th Annual CARD Conference January 26 & 27,2008


The 15th Annual CARD Conference will be held at the
Lake Mary Mariott (Orlando area).
Conference speakers will include:
Dr. Ami Klin Yale University
Drs. Lynn & Bob Koegel University of CA at Santa Barbara
Dr. Pat Rogan Indiana University
Dr. Peter Szatmari
Dr. Maria Bove




Support Groups
Autism Spectrum Disorder Focus Group
Palatka, FL
Contact: Cheryl Brenner 386 467-3820
A support group for parents to network with one another, share
stories and give each other ideas on helping their children succeed.
Occasional training are provided to help parents learn how to help
their children. This month parents will be able to observe
parent/child games developed to improve communication and
sensory issues. Childcare is provided. Meetings begin at 6PM.
Location:
Wiiliam D.Mosely Elementary School Media Center
1001 Husson Avenue
Palatka, FL
(Park in rear of school)
Scheduled Meeting Dates: Please contact Cheryl

Helping Hands Parent Support Group
For parents with autistic/special needs children
Ocala, FL
Contact: Sylvia Miller 352 624-1360
A support group for parents of children with Autism Spectrum
Disorders that welcomes parents of all special needs children.
Meets last Wednesday of each month from 6PM-8PM.
Location:
Ocala Public Library Conference room A
2720 East Silver Springs Boulevard
Ocala, FL
http://phpf-fountain.org
Scheduled Meeting Date: 11/28

Special Parents of Exceptional Children Support Group (SPEC)
Gainesville, FL
Contact: Pam Kissoondyal 352 318-3155
A local parent-formed support group SPEC (Special Parents of
Exceptional Children) meets at the CARD office each month.
The informal meetings are from 7PM-9PM, but newcomers are
welcome to show up at 6PM to meet and discuss their concerns.


Free Pre-Conference Day for teachers and adult service
providers on Friday January 25th:
Dr. Karen Erickson University of North Carolina
Presentation on teacher/CARD collaborations

Brochures will be available soon. You may also visit this
website for updates http://doepartnership.usf.edu/





Parents of children with any disability are welcome.
Location:
CARD Offices
1405 NW 13th Street
Gainesville, FL 32601-4058
Scheduled Meeting Dates: 11/9, 12/14, 1/11, 2/8, 3/14, 4/11, 5/9
(2nd Friday of the month from September May)

Support Group for Adults on the Spectrum
Gainesville, FL
Contact: Robin Byrd 352 846-3700 or byrd@mbi.ufl.edu
This is a discussion group for adults with ASD. Meetings are the
last Thursday of every month at 12:00 noon. Please feel free to
bring your lunch!
Location:
CARD Offices
1405 NW 13th Street
Gainesville, FL 32601-4058



Event Highlight

Communication Development for Persons Who are Nonverbal
and/or Challenged Communicators
Presenter: Dr. June Downing
November 15- 17, 2007
Orlando, FL
Dr. June Downing is a national leader in the field of education for
students with severe and multiple disabilities, including deaf-blind-
ness. As a professor of Special Education, at California State Uni-
versity, Northridge, and prior to that, at the University of Arizona
in Tucson, Dr. Downing prepared teachers to work with students
who have moderate to profound disabilities. She currently contin-
ues her training efforts as an independent educational consultant.
She has published numerous articles, chapters, and books on com-
munication, literacy, assessment, vision use, and tactile strategies.
Her work and writings emphasize the benefits of inclusive educa-
tion for students with disabilities. Contact: Pam Kissondyal
800 667-4052, 352 846-2757, or pam.kissoondyal@mbi.ufl.edu


The PostCARD 4






The PostCARD 5


Tech Tip How to Override Internet Browser Settings

Our last Tech Tip was about accessibility features in Windows and Mac OS. Sometimes you may want to change only the fonts in your Internet
browser (make them larger, for example). Using Internet Explorer on a PC you would click on 'Tools' then 'Internet Options'. Look for buttons
that say 'Fonts' and Accessibility'. You can change font options there. In Firefox (my browser of choice for both Mac and PC) you click 'Firefox -
- Preferences' (Mac) or 'Tools -- Options' (PC). The 'Fonts and Colors' section is where you can select font sizes, styles, and colors of your choice.
For Safari users, click 'Safari Preferences' and use the Appearance' and 'Advanced' tabs to change font settings. There are many Internet brows-
ers, so consult the Help file of your browser for more information.
John Polefko


Nex TchTi -Scee Cptre


Websites in the Spotlight


This month our "Websites in the Spotlight" will focus on fun
and safety, especially in regard to the upcoming holidays which
can sometimes be unpredictable and stressful for families dealing
with ASD. Also, while we are in the height of hurricane season, I
thought it would be good to tell you about some websites pertain-
ing to handling emergencies.

Holidays
About.com has several pages about the holidays and autism. There
are also links to information about parenting typical children
as well as parenting children with special needs.
How To Enjoy Halloween with Your Autistic Child
http://autism.about.com/od/autismhowtos/ht/halloween.htm
Before You Celebrate Thanksgiving with Your Autistic Loved One
http://autism.about.com/od/copingwithautism/bb/beforeturkey
Handling the Holidays with a Child on the Autism Spectrum
http://autism.about.com/od/copingwithautism/f/holidayfaq.htm

This link will take you to a letter written to family and friends by
the mother of a child with ASD, explaining why her child may act
or react to the situations that children are often introduced to dur-
ing family gatherings.
http://www.danasview.net/holidayl.htm

Safety
Having critical information available in an easily accessible form,
prepared ahead of time could save worry and perhaps a life. You
may want to consider downloading the form from this website, fill-
ing out the information, and putting it in a safe location. You may
even want to keep a copy in the glove-box of your car. It includes
a place for you to answer questions about your special needs child
that you would not find on a typical health needs form.
Family Network on Disabilites (FND) of Florida's Take and Go
Emergency Form
http://www.fndfl.org/takeandgo.pdf


The National Autism Association's website has an article on emer-
gency preparedness, some tips, and links to more helpful websites.
www.nationalautismassociation.org/safetytoolkit.php

The Indiana Resource Center for Autism also has a good article
about emergency preparedness.
http://www.iidc.indiana.edu/irca/communication/Emergencies.
html

This site sells car or window stickers & magnets that can alert
emergency personnel that an individual with autism may be inside
a vehicle or home during an emergency.
http://www.buttonsandmore.com/decal/ulthm.htm

Customized honk or whistle for locating lost children, etc.
I'll close with a tip from another mom...
Yesterday I was downtown enjoying lunch with a friend and my
daughter and several of her friends. After lunch, the girls started walk-
ing towards what they thought was the direction oftheir parked car.
They got lost downtown. I jumped in my car and drove around looking
for them, but couldn't locate them. Then I began honking our special
customized honk. While Mary and her friends were trying to find me,
she said "I hear my Mom" Her friends couldn't understand, but Mary
knew exactly where to go to find me. Our customized honk saved the
day. You can make up your own customized honk. Mine was simply
left over from my high school years. The honk went to the rhythm ofa
cheer: "Rangers, Rangers, we are the Rangers. "I use it for school pick
ups, football game pick ups, etc. Practice it on the kids ifl'm waiting
in the driveway just so they know the honk and will respond to it when
necessary.
This same method could be used with a whistle or other noise-
maker when not in the car. Great way to find kids in an amusement
park I would think. Kathy Robinson






rIn CA R UG Uines Uil Staff- PareInt Partners


Robbin Byrd, B.S. CARD Consultant
Meghan Fabrizi Student Assistant
Margie Garlin Program Assistant
Jordan Ginsburg Student Assistant
Brittany Gudaitis Student Assistant
Susan Hill, A.R.N.P CARD Consultant
Mark Lewis, Ph.D. Executive Director
Margaret Maddox Student Assistant
Leannis Maxwell Program Assistant
Melinda Morrison, RN, BSN
Sibshop Coordinator
Tanya Murphy, M.D. Clinical Director



Training News
We are off to a fantastic and busy start in
many of our school districts! After a produc-
tive meeting with several of our Exceptional
Student Education (ESE) directors and
other agency representatives in May, we are
expanding our professional development
for educators in Alachua, Citrus, Hamilton,
Levy, Gilchrist, and Union counties.

We are also offering training for parents or
any other interested parties in Putnam, Mari-
on and Citrus counties. Topics include: Potty
Training, Individual Education Programs
(IEPs), Visual Supports/Communication
and Behavior. Please see our website calendar
(www.card.ufl.edu) for more details.

Susan Hill, our resident psychiatric nurse


Ann-Marie Orlando, M.S. CCC-SP/AATT
CARD Consultant
Carole Polefko Public Education Coordinator
John Polefko, M.Ed. CARD Consultant
Kathy Robinson Visual Supports Specialist
Mallerie Sherr Student Assistant
Kevi Sirgo Receptionist/Intake Coordinator
Greg Valcante, Ph.D. Director
Art Wallen, M.S. Associate Director
Cathy Zenko, M.S., CCC-SLP
CARD Consultant


Cheryl Brenner Putnam County
Heidi Jennison Hernando County
Pam Kissoondyal Alachua County
Sylvia Miller Marion County
Amparo Perales Marion County
Trish Thoburn Alachua County


Cover Artwork Lauren Wooley


practioner, conducted a great training on
medications that children and adults with
ASD may encounter. The workshop helps
caregivers understand the implications of
the medications and possible side effects.
Susan expressed an interest in having this be
a recurring training for caregivers. Please call
352 273-0581 if you are interested in having
this training in your area.

We are in the process of scheduling our
Regional Department of Education (DOE)
workshops for this 2007-2008 school year.
We plan to bring back Marilyn Volker in
November to present her workshop on
Sexuality: "Honoring All People: Addressing
Sexuality, Body, and Relationships Issues."
The workshop will be in Gainesville on


November 15th. We plan to have another
all day workshop on Transition issues on
December 3rd in Ocala. Please check our
website for updates and registration forms
when they become available.

We have a training request form on our web-
site under the "Forms/Contact Us" section.
If you have training needs in your area, we
are always willing to fill your requests to the
best of our ability. We do ask that a mini-
mum of five people register for any training
that requires us to travel out of town. We ask
that you RSVP so we can contact you in case
of any time, date, or location change.
Leannis Maxwell


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