The Post CARD
bear Families and Friends of CARDP,
APRIL IS NATIONAL
AUTISM AWARENESS MONTH!
Some of the most important and most fun
things we do here at the Center for Autism and
Related Disabilities are our efforts in the area of
Public Education. Informing the people in our
communities is one of the four missions of CARD
that we are required to address by the legislation
that created our Centers and our contract with the
Florida Department of Education. This year, our
Center staff have planned a variety of exciting
programs and activities to celebrate National
Autism Awareness Month and to inform the public
about autism, and about CARD.
On Wednesday April 9, we will be hosting an
Open House at our NW 16th Avenue office from
2:00 to 7:00 PM. We are hoping many of you will
use this opportunity to meet our staff, learn more
about autism and CARD, browse our lending library
and meet other parents and professionals. We are
looking for a great turn-out from the community.
Burger King is also helping us to get the word out
about autism. Autism posters will be displayed and
information sheets placed in "to go" bags at four
Gainesville Burger King restaurants thanks to the
assistance and support of the Gatton family and
Gina Britton at Burger King of Gainesville, and our
handsome poster boy, Sam.
We also need your help this month. The
more we can educate the public about autism the
better. You are in contact with doctors, dentists,
hairdressers, police officers, merchants, school
principals, parents, day care providers, Sunday
School teachers and many, many other community
members who are not aware of autism and CARD.
You can help us to inform the public by wearing an
autism awareness ribbon, handing out ribbons and
literature, and talking to people in your community.
We have ribbons, literature, videotapes, and
general information available for you to use. Just
come by our office or call us and we will do our
best to get you what you need to promote autism
awareness in your community. The early identifica-
tion of young children with autism can make a
difference for them and for their families. For
older children and adults with autism to participate
in our communities, we need our neighbors, friends,
and community members to know about autism.
Thank you for your help. We hope to see you soon!
Wefc hope Jtoe uo
Inside this Edition
A Week in the Life of
Siblings an Integral Part
of the Family
CARD UF/Gainesville News
Page 7 & 8
Our Lending Library is Growing!
Thanks to a generous donation
of $2000 from the
John Maxwell Biasco Foundation
We have added extra copies of our most
requested books and videosand many new
titles. If you would like to borrow any library
items please stop by our offices located at
806A NW 16th Avenue
or call Carole Polefko at
800/754-5891 or 352/846-3456
for more information.
For more information about the
John Maxwell Biasco Foundation
visit their website at
or contact Tambria M. Biasco at
The John Maxwell Boasco Foundation
5030 Mandavilla Blvd.
Gulf Breeze, FL 32563
A Publication of the Centerfor Autism and Related Disabilities
at the University of Florida Gainesville
A Week in the Life of CARD/UF Gainesville
Have you ever seen something or heard something you thought was a fascinating idea and decided to run
with it? Well, several months ago, I saw a small article in the newsletter from the West Virginia Deaf-Blind
Project, entitled, "A Week in the Life of the Deafblind Project" in which the editor briefly described the
activities conducted by the three staff members throughout the week. I thought it was a wonderful way to
give the reader an idea about what types of assistance the project staff members provide. So the staff here
at the UF CARD agreed to humor me, with some apprehension about what the final product would look like. The
fact that you are reading this now means that the product was worthy of print.
After much discussion, we decided that we would ask all staff members to document their activities
throughout the last week in October. We included evenings and the weekend because some of our activities
occur outside of typical working hours. Of course, in only documenting a one-week sample, we may have missed
some additional activities that occur monthly or bimonthly, but you will get the idea!
To put the article in perspective, of the 12 staff members, only half work full-time for CARD. The staff
members included the Director Greg Valcante (at 90% time); Associate Directors Donna Gilles (60% time) and
Art Wallen (80% time); Support Specialists Robbin Byrd (100% time), Jennifer Nye (100% time), Cathy Zenko
(100% time), Karin Marsh (100% time), and Caroline Raye (50% time); and Program Assistants and Support Staff
Carole Polefko (50% time), Margie Garlin (100% time), Leannis Maxwell (100% time), and Alex Green (38% time).
Also be aware that sometimes the same staff member may have been engaged in more than one activity. For
example, in the last section under "Daily Operations", we really didn't have 15 staff members available. The
staff member who helped put the "Emotions Binder" together may have also been the one to help with the
pictures for the conference and making visual supports.
The article reflects information that never rolls off of our tongues when someone asks "Just what does CARD
do? So, if you have ever wondered about the specifics of what we do, this story may satisfy your curiosity.
Enjoy! And thank you, Carole.
During the week of October 26th November 1st.........
9 new constituent intakes were received
8 staff members went on 8 school visits and 12 home/community visits
62 constituents received services
81 people including parents, grandparents, support coordinators, staff of an adult constituent's home, an
occupational therapist, a social worker, a UF Psychiatry Resident, a Positive Behavioral Support Team,
teachers, teachers' aides, a speech language pathologist, an ESE administrator, and other school person-
nel were contacted
CARD Staff tried to help constituents with...
school, housing, health insurance, sensory diet, communication, social relationships, behavior, routines,
visual supports, social stories, shopping, curriculum modification/accommodations, self-injury, peer
empathy, suspension from school, PBS (Positive Behavior Support), eating, classroom environment, inclu-
sion, sleep, English as a second language, IEPs, toileting, restaurant behavior, siblings, foster care,
apartment living, support services, the need for a psychiatrist who can sign, medication outcomes, and
- 2 staff members worked on creating an "Emotions Binder" for constituents
- 2 staff members prepared visual supports for constituents
During the week of October 26th November 1st.........
10 training were prepared Literacy Institute, Asperger Syndrome Inservice, 2 DOE Workshops,
Teacher Training Programs, PBS(Positive Behavioral Support) Training Series, Collaborative Teaming,
Visual Support Training Series, Division of Early Childhood Conference Presentation, Visual Supports (1
2 training were held Positive Behavioral Support Training Series & Collaborative Teaming
During the week of October 26th November 1st.........
The following Public Education activities occurred:
- 485 training reminder emails were sent out
- 1 staff member worked on updating resource sheets that provide information on service agencies for all
14 counties in our region
- 2 staff members collected contact information about early intervention providers
- 1 staff member gave autism information to a physician from Ethiopia and provided information on com-
munication to another physician from Bangladesh whose patient is a 5 year old child with out any support
- 1 staff member worked on creating a CARD UF/Gainesville listserv
- 1 staff member created a bulletin board for sharing information about autism and CARD services with
patients at the Shands Child and Adolescent Psychiatry outpatient clinic
During the week of October 26th November 1st.........
The following Technical Assistance activities occurred:
- 1 staff member attended a Florida Respite Care Meeting
- 2 staff members prepared for a Sibshop
- 1 staff member helped plan for housing for a potential constituent
- 2 staff members created a technical assistance packet to be used for follow up to the our teacher
- 1 staff member contacted the Florida Inclusion Network to plan for the Department of Education
sponsored regional workshops
- 1 staff member prepared for providing technical assistance to a school
- 1 staff member talked with the Yale Child Study staff about sibshops
- 4 staff members prepared for Parents' Night Out
- 1 staff member created a visual supports folder to take on visits
- 1 staff member assisted a parent of a potential constituent with accessing resources and an evaluation
- 1 staff member helped other staff members with data collection strategies for a child with a sleep
- 1 staff member researched the eligibility rule for Vocational Rehabilitation
- 1 staff member spoke with a physician about collaborating with Shands Child and Adolescent Psychiatry
- 1 staff member participated in an Autism Project meeting at the Shands Child and Adolescent Psychia-
try outpatient unit
- 1 staff member talked with a Parent Partner about their duties
- 1 staff member provided consultation to School Board of Alachua County staff
- 3 staff members conducted a Sibshop(continued on page 4)
(continued on page 4)
CONSTITUENT HIGHLIGHT: BRIANNA ROBBINS
Living with a Sibling with Autism
By Jaclyn Robbins (age 10)
Brianna is an 8 year old girl who lives in
Ocala, Florida with her
mom,dad and her older
sister, Jaclyn (the author 5
of this story). Life is very .
different because most
people have a normal sibling.
Well, I don't. What I like
about my sister is she looks
up to me and I help her on
the computer. I wish we
could go to the movies
together. She's the best
bike rider ever. I teach
her to stop, turn and pull over. I wish I could
have a cure for her problem. I help her commu-
nicate by using pictures and talking.
Here are some tips for being a good sibling:
-Never be embarrassed to have a
Sibling with autism. Even when
they do very silly things, don't be
" embarrassed. Never be embar-
rassed because they're humans
just like you.
-If somebody makes fun of your
sibling, stand up for them.
-Give them space, because they
H can hurt you sometimes, even if
you're the older sibling.
I help my mom at home and out
in public. When my sister is
having problems, I help my mom carry stuff and help
my sister get out of the area. She's my best friend
and I love her alot!!
(continued from page 3)
During the week of October 26th November 1st.........
In addition to the regular office activities such as answering phone and email messages, entering contacts
and visits into our database, picking up and returning rental cars, signing people up for training, prepar-
ing for meetings, recording meeting minutes, filing records, photocopying, restocking our dissemination
file and handouts racks, checking library items in and out, and mailing out information, the following
operational activities occurred:
- 1 staff member contacted several people about overdue library items
- 2 staff members worked on our quarterly report for the Florida Department of Education
- 2 staff members worked on the CARD UF/Gainesville budget
- 1 staff member prepared for an upcoming staff retreat
- 1 staff member gathered addresses for the Autism System of Care research project
- 1 staff member contacted the other CARDs regarding an upcoming Committee Meeting and computer
- 2 staff members prepared pictures and other materials for the CARD conference
- 1 staff member summarized training evaluations
- 1 staff member worked on staff goals and objectives providing each staff member with a list of their
responsibilities regarding CARD Goals and Objectives for 2002-2003
- 1 staff member worked on advertising upcoming training
- 1 staff member updated the database of community professionals who provide service to our constitu-
- 1 staff member reviewed job applications for an open position at CARD
By Greg Valcante
Karin Marsh is a woman on the
move. From Tallahassee to Atlanta,
to Wahsington D.C., to Orlando, to
Charleston, S.C., Connecticut,
Seattle, WA, to Gainesville, FL, her
path has led her to her current role
as Coordinator of Education /
Training Programs for the UF/
Gainesville CARD. Karin has always
been interested in working with
children and families and started
out in education as a substitute teacher and as a para-
professional even though her parents who are both
college professors warned her to "never be a teacher".
After graduating from Agnes Scott College in Georgia
as a Rhodes Scholar Candidate, Karin pursued gradu-
ate studies at the University of Central Florida and
earned her Master's degree in Early Childhood Special
Education at the University of Washington. Karin's
husband and childhood sweethart, Lee, was a Naval
Officer so she was limited in where she could apply to
school. "We had a good feeling because not a lot of
people wanted to go to Washington" Karin says of her
move to Seattle. With Lee busy with his career as a
Jag submarine officer, Karin was finding her own
direction. "It was kind of a good time for me to do my
schooling because I could concentrate on my studies"
she said. Living in Navy housing with a 2 hour commute
to and from school each day that included three
busses and a ferry each way did not deter her.
Karin's first job after being graduated from
UW was at the Holly Ridge Early Childhood Center in
Seattle. While there she began to do home visits, run
parent toddler play groups, use incidental teaching
strategies, teach parents how to use sign language,
teach in a pre-school programs for 2 to 3 year-olds in
the morning and do home visits in the afternoon.
After one year, the Holly Ridge Center opened a new
site in the small finishing village of Poulsbo, Washing-
ton (nearer to home for Karin) and she was put in
charge of the new center. There she began "Mommy
and Me" classes for parents and kids together and
worked with children who had speech and language
delays, Down Syndrome, autism, Cerebral Palsy, and a
variety of other disabilities. At the new center, Karin
teamed with a Developmental Pediatrician and began a
program that was inclusive, serving children with and
without disabilities together. The parents of the
typically developing children "loved it" according to
Karin and she recalls it as "an absolutely wonderful
experience" for all involved.
In 2001, Karin and Lee moved from Seattle
Washington to Gainesville, Florida for Lee to enroll in
the University of Florida Levin College of Law. Karin
had heard about the CARD program at FSU from a
friend in Tallahassee who has a child with autism and
went on a mission to find the CARD at UF/Gainesville as
soon as she arrived in Gator Country. We are fortunate
that she found us at the very time we were looking to
fill an open position. Karin impressed everyone on the
CARD staff so much with her interview that we could
not wait for her to join our team. After a year and a
half at CARD, there are now many more families, chil-
dren and teachers and other professionals who are as
delighted as we are that she is a full time member of
the CARD staff.
Since the last newsletter, we have had
several sibshops for children of a variety of ages.
On June 29th, five siblings (ages 5-8)
attended a sibshop at Faith Presbyterian Church in
Gainesville. This event had a circus/carnival theme.
The kids and staff enjoyed playing many games and
watching a fabulous magic show by B-Magic the
magician. Some other favorite activities included
making gak and mud pie! Thanks to Hungry Howie's
for donating free pizzas for lunch. We are also
grateful to both Faith Presbyterian and B-Magic
for donating the space and entertainment.
On August 24th, six siblings (ages 12-16)
joined us for an exciting sibshop at the Gainesville
Rock Gym. Although admittedly a little scary at
times, we all had fun learning to climb and "belay."
In addition to the climbing, we played a lot of
really silly games and shared stories about our
siblings. A big thanks to the Rock Gym for giving us
a discount and opening early and to Five Star pizza
for donating our lunch!
On October 26th, eight siblings (ages 8-12)
met at the Reitz Union at the University of
Florida. Here we played games, talked about our
siblings, made crafts and went bowling. We had
some requests to have bumpers in the lanes next
Finally, on January 25th six siblings (ages 5-
8) attended a sibshop at Sun Country Gymnastics.
We had fun doing gymnastics, playing silly games,
doing art projects and decorating (and eating)
chocolate cookies. A big thanks to Hungry Howie's
Pizza in Jonesville for donating free pizzas for our
The next sibshop will be for 12-16 year olds
at Skate Station on March 29th.
If you have attended a sibshop (or are a
parent of a child who has) and you have any input/
suggestions, don't hesitate to contact me. In
addition, if you have any ideas about upcoming
locations or activities, please let me know.
Thanks, Karin Marsh 352/392-4171
____ __ r
Siblings: An Integral Part of the Family
By Karin Marsh
"You are about to embark on one of the most rewarding journeys of your life."
This message was written on the top of a Sibshop manual given to me shortly after beginning work at
CARD. This manual was prepared by banielle Liso, former CARD staff member, and her words were very true!
Over the past few decades, the medical and educational
fields have made attempts to make services "family friendly."
However, the majority of the efforts define family as the par-
ents. Many schools and communities have begun parent support
groups and publications. About 13 years ago, bon Meyer founded
the Sibling Support Project to include siblings in the definition of
family. He acknowledges that brothers and sisters "will be in the
lives of family members with special health and developmental
needs longer than anyone."
One of the initial goals of the Sibling Support Project was
to identify siblings' unique needs. By surveying brothers and
sisters of varying ages, bon Meyer and Patricia Vadasy, identified
some common concerns. These include embarrassment, guilt,
shame, resentment and isolation.
The Sibling Support Project advocates addressing these
needs by providing siblings with information and support. Brothers and sisters can receive information by talking
with parents keep the disability an open topic and attempt to answer questions. Since 1990 many books have
been written for siblings. Many of these materials are referenced on the Project's website: http://
Support can come from parents and peers. Setting aside a special time just for a sibling with Mom or bad
is priceless for many brothers and sisters. Additionally, it is very powerful for siblings to meet their peers and
realize, as one sibshop participant said, "I am not the only person
in the world with a sibling with a disability."
One opportunity for peer support is Sibshops. In Sibshops:
Workshops for Siblings of Children with Special Needs, bon
Meyer and Patricia Vadasy outline the 5 goals of these workshops:
1) Provide siblings an opportunity to meet other siblings in a
relaxed, fun setting; 2) Provide siblings opportunities to discuss
common joys and concerns; 3) Provide siblings opportunities to
learn how to handle commonly experienced situations; 4) Provide
siblings with opportunities to learn more about the implications of
their brother's/sister's special needs and 5) Provide professionals
opportunities to learn more about siblings. Sibshops are designed
to be fun events. Discussion-type activities are dispersed among
games, cooking and crafts. There are over 200 Sibshops in exist-
ence in this country and others.
For siblings who can't or wish not to attend Sibshops, they can
receive some peer support using 2 listservs found on the Project's website. SibKids is for younger brothers and
sisters and SibNet is for older siblings (usually 18 and up). Siblings can chat with brothers and sisters all over the
In graduate school, I was fortunate to hear bon Meyer speak on several occasions. Each time, I promised
myself that some day I would get involved to help honor brothers and sisters. My employment at CARD has given
me this opportunity. Being involved with Sibshops is truly an amazing and rewarding experience. I plan to continue
to celebrate brothers and sisters for their vital roles and valuable contributions!
Are you 16 or older and have a sibling with autism or a related disability? Would you be willing to
share your experiences on growing up with your sibling? If so, we need your help at our Sibshops!
Please call Karin Marsh at 352/392-4171
Children's Association for Maximum Potential
CAMP was founded by doctors and nurses inter-
ested in providing overnight camping experiences
to children with special needs who were not eli-
gible for other camps due to the severity of the
child's condition. Children with tracheostomies,
ventilator support, gastrostomies, central cath-
eters, peritoneal dialysis, overnight drip infusions,
etc. can be served. Many campers have no verbal
or communication or self-help skills. Others re-
quire multiple medications around the clock. Some
children have milder problems but slip through the
cracks and for some reason are unable to attend
CAMP's ultimate goal is consistent with the Ameri-
cans with Disabilities Act of 1990 (ADA) which
states that special health needs will not bar a child
from any camp. However, until other camps are
ready, CAMPs goal is that every child, regardless
of medical or staff supervisory needs, has the
opportunity to experience Camp CAMP now!
Professionals can attend Camp C.A.M.P. too!
Physicians, nurses, physical therapists, occupa-
tional therapist, speech therapists, educators,
and graduate students can earn CEUs or graduate
school credits. They attend classes every morning
taught by experts in the field from all over the
nation. By living side-by-side the campers, profes-
sionals learn first-hand what it is like to be a par-
ent of a child with special needs. As a result, they
gain new insight regarding the needs of the chil-
dren and their families. This will hopefully enable
them to be better service providers when they
return to their communities.
Check out Camp C.A.M.P.'s website for details -
www.campcamp.org or contact them at:
CHILDREN'S ASSOCIATION FOR
P.O. BOX 27086
SAN ANTONIO, TEXAS 78227
PHONE NUMBER: (210) 292-3566
FAX: (210) 292-3576
What are the Benefits of Receiving the
CARD UF/Gainesville Newsletter by Email?
+ Cut down on paper clutter in your home and office
+ Receive information faster
+ Receive periodic updates about our training
Please Note: We do not include attachments with our emails. In addition to the text of our emails we
include links to websites where you can find our current newsletter or more information about training.
If you are interested in switching over to email delivery contact Leannis Maxwell at
email@example.com. Please be sure to give her your current delivery address.
CARD UF/Gainesville Library News
Due to a large number of unreturned library
items we have recently implemented a new
library policy. Lenders may borrow library items
for a three week period. If at 4 weeks the
library item is not returned borrowers will
receive a reminder call. If the item is still not
returned by 7 weeks then a Suspension Letter is
mailed out. The purpose of our new library
policy is not to punish anyone, but to
be sure that library items are available to all of
Your Input is Neededl
Sleep Study at UF Department of Psychiatry
Dr. Jodi Star is conducting a research study
documenting sleep problems in children with au-
tism spectrum disorders and exploring the effects
of this on family members. She will also be looking
at the effects of various medications and other
supplements (especially melatonin) on children with
ASD. She would like to know...
1) Does your child have sleep problems?
2) If so, do these problems in turn affect other
family members' sleep?
Please email your replies to Dr. Jodi Star at
April is Autism Awareness Monthl
What Can You Do to Educate Autism Facts You Can Share
Others About Autism? With Others:
Wit a l t y local Autism is a lifelong developmental disability
1. Write a letter to your local .
Snewpaer resulting from a neurological disorder that
2. Pass out autism information affects the way the brain functions.
2. Pass out autism information .
bookmarks. People with autism have difficulties interacting
3. with others, behaving in socially appropriate
3. Give a presentation on autism
at your child's scool.* ways, using language and communicating. They
at your child's school.*
Sk your ci s tend to develop narrow interests, repetitive
4. Ask your local library to set up .
Ask yr loal liba to set u behaviors, and intense attachments to routines,
a display of available autism
a dsay o aaae asm r r They can seem too sensitive to sights, sounds,
smells, or physical contact or not sensitive
CARD UF/Gainesville can enough.
SanThe Autism Society of America estimates that
provide you with bookmarks and 1
provide you with bookmarks and as many as 1 in every 500 children is born with
other materials to help with
other materials to help with autism. It affects more people than town's
presentations. Please contact Syndrome, Muscular Dystrophy, or Multiple
Leannis Maxwell by phone at Sclerosis.
352/846-3455 or 800/754- Sclerosis.
5891 or by eail at Autism is more common in boys than in girls.
firstname.lastname@example.org to request Autism affects people of all races, religions,
materials be sent to you. ethnicities, and social backgrounds.
materials be sent to you.
In celebration of Autism Awareness Month
is having an Open Housel
+ Learn more about CARD's services
+ Browse our lending library
+ Ask our staff questions
+ Chat with other families and professionals
Date: April 9, 2003 For more information
Time: 2PM 7PM contact Leannis Maxwell
Place: 806A NW 16th Avenue 352/846-3455 or 800/754-5891
Gainesville, FL email@example.com
The Post CARD
PO BOX 100234
Gainesville, FL 32610-0234
352/846-3455 or 800/754-5891
for information about:
*current news about autism and re-