Letter from the director
 Just what is a visual support make...
 CARD/UF Gainesville news
 Holiday letter from a person with...
 Support groups
 Training information

Title: PostCARD
Full Citation
Permanent Link: http://ufdc.ufl.edu/UF00087039/00012
 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 2004
 Record Information
Bibliographic ID: UF00087039
Volume ID: VID00012
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
    Just what is a visual support make and take?
        Page 2
    CARD/UF Gainesville news
        Page 3
    Holiday letter from a person with autism
        Page 4
    Support groups
        Page 5
    Training information
        Page 6
Full Text

The Post CARD

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

Fall 2004

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
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
Cheryl Brenner, Putnam County
Pam Kissoondyal, Alachua County
Sylvia Miller, Marion County
Amparo Perales, Marion County
Pam Veith, Citrus 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)

Dear Families and Friends of CARD,
Happy Holidays! We hope the holidays are peace-
ful and relaxing for you and are not too stressful. Some-
times the disruptions that accompany changes in routine,
travel, no school, family visits etc. can be especially difficult
for persons with autism and related disabilities. A brief
article inside this issue gives the perspective of one person
with autism.
We at CARD are busily preparing for the start of
2005. The new year will start with a bang for us with the
Annual CARD Conference in Orlando on January 14-16
and the Psychiatry Department Autism Conference in
Gainesville on January 21. Look on our website or call our
office if you need more information on these events. We
will also be taking our Survival Skills workshops to Palatka
and Chiefland starting in January.
Further on in the spring, we will be sponsoring our
Florida Department of Education regional training work-
shops. Two are scheduled already and we will get you
more information on them in the near future. But in case
you want to save the dates on your calendar, there will be
a one day workshop on Providing Quality Programs for
Young Children with Autism and Related Disabilities in
Gainesville on February 11, 2005 and a one day workshop
on Inclusion for Students with Autism and Related Disabili-
ties in Ocala on March 18, 2005.
The study of autism spectrum disorders is becoming
more and more attractive to researchers throughout the
world and the University of Florida is keeping pace. There
are currently several research studies that are on-going at
UF and several more getting ready to start up this spring.
We are working with our colleagues in Medicine, Psychol-
ogy, Education and Nursing to keep families informed of
research opportunities and to further our understanding of
autism and related disabilities. We will highlight some of
these research projects in our next newsletter to you. In the
meantime, if you have any questions about research at the
University of Florida, don't hesitate to call us.

Page 2
Just What is a Visual Support Make and Take?
Hurricane Relief
Page 3
CARD/UF Gainesville News
Page 4
Holiday Letter from a Person with Autism
Page 5
Sibshop Update
Local Support Group Information
Page 6
Top Ten Tips for Choosing a Toy For a Child with a Disability
Training Information

Most of you have probably heard of a Visual Supports Make and Take and many of you have probably won-
dered about what they are. I would like to take this opportunity to explain them to you and encourage you to come to
one sometime if you think visual supports would be helpful for someone in your family or classroom.
Visual supports are any type of picture, schedule, calendar, environmental cue, body language, sign language,
or specially designed tool. We ourselves use visual supports everyday often in the form of words written as "to do" lists,
day planners, appointment cards, etc. For those with Autism Spectrum Disorder (ASD) visual supports often involve
pictures or objects that are easily recognized and universally understood. A weekly calendar with pictures showing
which days are school days, which are weekends, days for going to speech or O.T. appointments can help to make life
more predictable and understandable for everyone involved. A visual calendar that is set up and viewed daily can be
a big help, especially when a change in the usual schedule will be taking place.
People often think that you have to be creative or have computer skills to make a visual support. When you
come to a "Make and Take" you will find that this is not true. You can easily make something to take home with you
within an hour or two without needing to be either creative or a computer wizard.
The most common visual support that people make is a morning or bedtime schedule. This is a series of pictures
that represent the steps taken to prepare for school or going to bed. The pictures are chosen from a computer pro-
gram, printed and laminated, and then Velcro is applied to the back. A strip of poster board is then laminated and the
pictures are placed (with the Velcro) in the correct sequence on the board. A "stop" or "finished" pocket is placed at
the end of the schedule where the pictures will be placed as each step of the schedule is completed. This way each
step of the sequence has a visual reminder and as each step is completed it is easy to see what comes next and how
much ( or little) is left to do to finish the task.
Another simple but effective visual support is a "first/then" schedule. This is a laminated piece of construction
paper that has the words "first" written above one column and "then" written above the other.
A piece of Velcro is applied below each word and then pictures representing the desired sequence are placed ac-
cordingly; i.e. first = homework, then = play outside.
Other types of visual supports that can be made at a Make and Take are choice boards, people locators show-
ing who will be where and when, communication boards, calendars and daily planners. Also rules for home or school
can be represented visually. These are just a few examples of the most commonly made items. You can learn how to
make any of these with a little help from the CARD staff who also attend these workshops.
There is no charge for attending a Make and Take or for using any of the needed materials. Laminating supplies,
Velcro, magnets, computers and software are all available for your use. The only thing that you need to bring is an idea
of what you need to make and possibly some pictures of people or favorite toys.
Make and Takes have also turned out to be a nice way for parents to share ideas, network and find mutual
If you have the opportunity and would like to learn more, please register to attend a Make and Take near you!
They are scheduled for the first Tuesday evening of the month at our Gainesville location and on the third Tuesday of the
month in other counties on a quarterly basis. If you have questions about the date for a Make and Take in your area or
would like to register for a workshop please call Leannis Maxwell at (352)846-3455. The exact dates can be found on our
website (www.card.ufl.edu) or on our training calendar.

Escambia County Schools News Release, December 3, 2004
Workman Middle Receives Donation
D.J. Savarese, a sixth grade student at Grinnell Middle School in Grinnell, Iowa, recently spearheaded a campaign to
raise money to aid a school that sustained damage from Hurricane Ivan and to replace some of the materials lost in
the school's media center.
D.J., a former Florida resident, wrote an announcement using his talker and then played it over the intercom asking
his fellow students to bring in 250 each. The students brought in enough quarters to raise over $330, and the student
council, led by President Merritt Meyer, then voted to match the sum. Grinnell Mutual Reinsurance Company also
donated over $300. The total sum collected and donated to Workman Middle School was $1,100.
For more information contact Jeff Pomeroy at 494-5665.

Editor's Note: DJ is a former Gainesville resident whose mother, Emily Savarese, worked for CARD.

CAR 0FGiesil News
by Cah Zen0

Last year we had the CARD baby boom.
As of December 2004, the baby boom is almost
officially over. We wanted to share with you
what all of our CARD babies are doing now.
We start with Robbin Byrd's son,
Nathaniel Lee Justin Byrd. He started
this CARD "pregnancy epidemic"
coming into the world on June 26,
2003 weighing 7 Ibs 5 oz. He is now a
very big, busy 19 month old. He's
weighing in at a full 32 pounds and he
loves to run, dance and play with his
friends, Wyatt and Spencer.
Next up is Hannah Elizabeth
Marsh, daughter of Karin Marsh.
Hannah joined our CARD
family just over a year
ago, on December 2,
2003 weighing 8 Ibs 13
oz. She is now getting
into everything a:; he
crawls around her ne1..
house just outside of
Chicago, IL. Hannah and
all her family are adju;t- Hnn
ing to the cold
weather in
Illinois since
they moved in
October 2004.
Karin reports
that Hannah j
loves playing
with her
Chester (the
dog) and affectionately calls him "Good Boy".
Isaac Nye Flanagan, son of Jennifer
Flanagan was the first baby of 2004. He made
his debut on January 20, 2004 weighing 7 Ibs. 14
oz. The name Isaac means "he laughs" and
according to Jenn, he does so even in his
sleep. He's now climbing on everything and
rapidly learning the meaning of the word "no"
and can tell you "no" by shaking his head
when he's about to get into something dan-
gerous. His favorite game is being pushed
around the house in the laundry hamper by
his daddy.

A few months later, Spencer Alexander
Zenko was born on Cinquo de Mayo (May 5,
2004) weighing 8 Ibs 6oz. He is a happy-go-lucky
little guy and loves watching his big brother and
laughing. He is now 7 months old and belly
crawling all over the place. He has
a lot to say (ma, da, ba) and his
favorite Christmas carol this year is
"All I want for Christmas is my two
front teeth" (we all hope they
come in soon!).
Patrick Thomas Polefko was
left out of last year's article, but he
was already in his mommy, Carole
anelI Polefko's tummy waiting to
join his other CARD broth-
ers and sisters. Patrick was
born on June 10, 2004
weighing 7lbs. 15 oz. He is
now 6 months old and
rolling ov.er. trying to sit up
and loves watching his big
brothers (Alex and Jack)
,- and sister (Julia).
Finally, Julian Luc
Gustavo Clopton,
son of our com-
puter consultant,
Kurt Clopton, was
born July 6, 2004
,, weighing 8 Ibs 4.5
oz. Julian is now in
his first few weeks
-, : n of eating solid
foods, an ability
he took no time in mastering. He's pictured in
official Packers clothing, an item that all babies
born in the state of Wisconsin are required to
We cannot say the CARD baby boom is
officially over until Caroline Raye, our former co-
worker gives birth to her second child, due any
day now.
Editor's Note: A little surprise for the rest of
the staff the CARD baby boom is alive and well.
Jennifer Flanagan just informed me that she is
expecting her second child in May!

This article appeared in the holiday 1999 issue of ASAP News! (Volume 3.5) The Autism Support and Advocacy Project,
and Potential Unlimited Publishing. It was written for the purpose of being sent to relatives and hosts of holiday gather-
ings who might need a crash course in what to expect from their guest with autism.

Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year. Sometimes these visits can be very hard
for me, but here is some information that might help our visit to be more successful. As you probably know, I am chal-
lenged by a hidden disability called Autism, or what some people refer to as a Pervasive Developmental Disorder (PDD).
Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I
have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at
the same time, make myself understood. People with autism have different abilities: Some may not speak, some write
beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making
friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily
frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how
and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as
much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to
relearn the situation all over again! It is very hard.
When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I
have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you--I am not.
Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that
are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can
be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a
private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting
in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds,
and people--I just have to get up and move about. Please don't hold up your meal for me--go on without me, and my
parents will handle the situation the best way they know how.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder
eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated
mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I
am not being picky--I literally cannot eat certain foods as my sensory system and/or oral motor coordination are im-
Don't be disappointed If Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and
frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to some-
one else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit
into the world around me (which is so hard to figure out)! Things have to be done in a way I am familiar with or else I
might get confused and frustrated. It doesn't mean you have to change the way you are doing things-just please be
patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes
me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The
grown ups call it "self regulation," or "stimming." I might rock, hum, flick my fingers, or any number of different things. I am
not trying to be disruptive or weird.
Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from
talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kinda like self regulation or
stimming. I do this only because I have found something to occupy myself that makes me feel comfortable.
Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me "stim" for a while as they know me best and what helps
to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for
my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being overprotec-
tive, or condemned for not watching me close enough. They are human and have been given an assignment intended
for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive
place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way
that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to
follow some social rules. I am a unique person--an interesting person. I will find my place at this celebration that is com-
fortable for us all, as long as you'll try to view the world through my eyes!

SIBSHOPS ARE BACK!!! On Saturday, January 22 we will have a Sibshop for ages 8 12 at SunCountry Sports
Center West in Gainesville. There will be rock climbing, gymnastics, food and fun! If you have a sibling 8- 12
years of age who would like to be invited please call me at 352/392-4172. Keep an eye out for upcoming
sibshops in the Post CARD.

Contact : Jennifer Flanagan
Email : jnye@mbi.ufl.edu
Phone : 352/392-4172

If you would like to learn more about Sibshops please see our website.
You will find our brochure on Sibshops and an article about the relationships of autistic children and their
siblings and the increase of sibling support groups across the nation.

Alachua County
Alachua County parents, please join a new parent support group. This informal group will give you an opportunity to
meet other parents in similar situations. You will get to share your struggles and triumphs and learn other ways to cope
and move forward. The dates, times and locations are as follows:
1/21/05 7PM-9PM CARD Office
2/18/05 7PM-9PM CARD Office
3/18/05 7PM-9PM CARD Office
4/15/05 7PM-9PM CARD Office
2/4/05 10AM-12PM Millhopper Library
3/4/05 10AM-12PM Millhopper Library
4/1/05 10AM-12PM Millhopper Library
Please call the CARD office for contact information.
Columbia County
In January, we'd like to help parents form a group for Columbia and possibly surrounding counties that would meet at a
central location in Lake City. If you are interested in helping to get this started, please call Jennifer Flanagan at 352/392-
Hernando County
H.A.P.P.E.N The Hernando Autism Parenting and Personal Experience Network will be meeting on the 3rd Wednesday of
every month to discuss a different topic pertaining to Autism Spectrum Disorder. Grandparents, as well as parents of
children who have yet to receive a diagnosis are welcome to join the discussions.
Location: Pediatric Therapy Works
Time: 7:00PM- 8:30PM
Please note that there is no childcare, however, the meetings are free of charge.
For more information, and to register, please contact Leslie Bolen at (352) 683-0209
Marion County
Helping Hands This parent support group is open to parents of all special needs children. You are invited to join your
peers to gather valuable information and share thoughts, feelings, experiences and ideas. Please call Sylvia Miller at
352/687-2257 if you have any questions.
Last Tuesday of every month, 6:00PM 8:30PM
Location: Green Clover Hall
Marion County Governmental Complex
319 SE 26th Terrace
Ocala, FL
If you have information about other support groups in our area please
let us know so that we can add them to our website.

Selecting a toy for a child with disabilities? Here are the questions that the play experts at the National Lekotek
Center ask when choosing developmentally appropriate toys for differently-abled kids.

1. Multi-sensory appeal Does the toy respond with lights, sounds, or movement to engage the child? Are there
contrasting colors? Does it have a scent? Is there texture?
2. Method of activation Will the toy provide a challenge without frustration? What is the force required to activate?
What are the number and complexity of steps required to activate?
3. Places the toy will be used Will the toy be easy to store? Is there space in the home? Can the toy be used in a
variety of positions such as side-lying or on a wheelchair tray?
4. Opportunities for success Can play be open-ended with no definite right or wrong way? Is it adaptable to the
child's individual style, ability, and pace?
5. Current popularity Is it a toy that will help the child with disabilities feel like "any other kid?" Does it tie in with other
activities like books and art sets that promote other forms of play?
6. Self-expression Does the toy allow for creativity, uniqueness, and making choices? Will it give the child experi-
ence with a variety of media?
7. Adjustability- Does it have adjustable height, sound volume, speed, and level of difficulty?
8. Child's individual abilities Does the toy provide activities that reflect both developmental and chronological
ages? Does it reflect the child's interests and age?
9. Safety and Durability Does the toy fit with the child's size and strength? Does it have moisture resistance? Is the
toy and its parts sized appropriately? Can it be washed and cleaned?
10. Potential for interaction Will the child be an active participant during use? Will the toy encourage social en-
gagement with others?

Trin(ingII. Infor Imate io[n

January 4, 2005
January 11,2005
January 11,2005
January 14-16, 2005
January 18, 2005
January 21, 2005
January 25, 2005
January 27, 2005
February 11, 2005
March 18, 2005

Communication Make & Take (Gainesville)
Medications and ASD (Gainesville)
Benefits and Employment in 2005 Medicaid, Medicare, Social Security, and SSI (Gainesville)
12th Annual CARD Conference (Orlando)
Communication Make & Take (Lake City)
University of Florida Department of Psychiatry 6th Annual Autism Conference (Gainesville)
Providing Quality Programs for Young Children with Autism and Related Disabilities (Gainesville)
Inclusion for Students with Autism and Related Disabilities (Ocala)

Please see our website http://www.card.ufl.edu/cardcalendar.html for complete details on the training
listed above. If you do not have access to the internet please call Leannis Maxwell at 352/846-3455 or
800/754-5891 and she can mail you the information.

CAR UFlGinesv"i~mll

PO -o

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