• TABLE OF CONTENTS
HIDE
 Letter from the director
 Back to school
 Current research projects...
 24/7
 Training information and library...
 Hurricane emergency informatio...
 How do I decide what approach to...














Title: PostCARD
ALL VOLUMES CITATION PDF VIEWER THUMBNAILS PAGE IMAGE ZOOMABLE
Full Citation
STANDARD VIEW MARC VIEW
Permanent Link: http://ufdc.ufl.edu/UF00087039/00014
 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: Summer 2005
 Record Information
Bibliographic ID: UF00087039
Volume ID: VID00014
Source Institution: University of Florida
Rights Management: All rights reserved by the source institution and holding location.

Downloads

This item has the following downloads:

PostCARD24 ( PDF )


Table of Contents
    Letter from the director
        Page 1
    Back to school
        Page 2
    Current research projects at UF
        Page 3
    24/7
        Page 4
        Page 5
    Training information and library additions
        Page 6
    Hurricane emergency information
        Page 7
        Page 8
    How do I decide what approach to take with my child who has autism?
        Page 9
        Page 10
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
Margie Garlin, Program Assistant
Leannis Maxwell, Program Assistant
Kathy Robinson, Visual Supports Specialist
Carole Polefko, Public Education Coordinator
Kurt Clopton, Computer Consultant
Laura Pruitt, Student Assistant

Parent Partners
Wendy Baugh, Marion County
Cheryl Brenner, Putnam County
Pam Kissoondyal, Alachua County
Sylvia Miller, Marion County
Pam Veith, Citrus County

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


Contact Information
The Post CARD
CARD UF/Gainesville
PO BOX 100234
Gainesville, FL 32610-0234
352/846-2761 or 800/754-5891
352/846-0941 (fax)
cpolefko@mbi.ufl.edu
www.card.ufl.edu


Summer 2005


I hope you are having a summer that is positive
and at least somewhat relaxing. We know that summer
time, especially for families with school-aged kids, is often
a challenge and a disruption and a time to search for
ways to keep our children occupied, engaged, learning,
and happy. Please remember that we at CARD will try to
be here for you and do whatever we can to help you
through the summer months. Although some of our staff
will not be available at certain times due to maternity
leave or vacation, our office is open 12 months a year
and we are continuing to work with schools to provide
teacher training this summer as well as work with our
adult constituents and families across our region.
Our 3rd annual Literacy in Augmentative and
Alternative Communication summer institute was a great
success again and 30 parents and professionals learned
new skills for teaching their children over 5 very full days
from June 27 through July 1. We are very grateful to Drs.
Koppenhaver and Erickson for helping us create more
and more literacy expertise for individuals who have
autism and related disabilities.
Although we were hopeful that the CARD Centers
in Florida would receive additional funds from the Florida
Legislature this year, unfortunately, only the CARD Center
at Florida Atlantic University in Boca Raton was awarded
additional funds. The other six Centers including ours
were given the same funding that we have had for the
past five years. Because the costs of everything we do
have continued to rise over the past five years we are all
in a position of having to try to serve more and more
constituents with fewer personnel (there are more and
more of you and less and less of us). So, if you do not
receive the services from CARD that you were expecting,
please talk to us and we will try to find some way to
support you. Thanks for your patience and understand-
ing.


Sincerely,


Page 2 10 Tips for Transitioning Back to School
School Starting Dates
Page 3 24/7


Page 4


Current Research Projects at UF


Page 5 Training information
New Library Additions
Page 6 Summer Institute Update
Making It Through a Day at the Theme Park
Inserts Hurricane Emergency Information
How Do I Decide What Approach to
Take With My Child Who Has Autism?


A Publication of the Center for Autism and Related Disabilities
at the University of Florida/ Gainesville
Dear Families and Friends of CARD,


t/ve





10 Tips for Bk to S o by 0n Mi O


1) A week before school begins, start working
toward the school sleep schedule. Put your child
to bed 10-15 minutes earlier every night until you
reach the desired bedtime. With the right
amount of sleep, your child should wake up
rested and be ready for school.
2) Attend school orientation so that your child
can meet his/her teacher, visit the classroom
and take a tour of the school. Be sure to check
out the library, lunchroom, bus circle, restrooms,
clinic and office. Look for orientation dates and
times in the local newspaper, the school's
website or call the school.
3) At orientation or before, get the supply list for
your child's grade. You can usually find the list
on the school's website or at local discount
stores. Put your child's name on all his/her sup-
plies.
4) Help your child to learn his/her contact infor-
mation, such as first and last name, address,
phone number and parent's name. If your child
does not know this information, write it on an
index card and put it in their backpack or wallet.
5) Discuss with your child how they will be getting
to and from school each day. If they are to ride
a bus, talk about appropriate bus behavior. If
they are going to "after school care" or "car
pick-up", make sure they know where to go and
who to look for.
6) Discuss with your child what they will have for
lunch while at school. Most schools post their
weekly lunch menu in the newspaper or send it
home on the Friday before. If your child is bring-
ing a lunch box, be sure to pack foods he/she
likes, in containers he/she can open.
7) Set out clothes and backpacks the night
before. Wash newly purchased clothes or uni-
forms before wearing them to school. Have your
child try on the clothes to identify any distracting
strings or tags that may need to be removed.
8) After school, set aside a consistent location in
your house where homework can be com-
pleted. Equip this location with all the necessary
supplies such as pencils, crayons, scissors, pencil
sharpener, dictionary, ruler and calculator.


9) Create a visual schedule of your child's day,
week and/or month. This can be a simple calen-
dar, a written list or pictures showing the se-
quence of the day's events. Review the sched-
ule daily, so that you and your child can plan for
the next day.*
10) Make an appointment with or call your
child's teacher a few weeks after school starts to
check on how things are going. If your child has
special issues or concerns, you may want to
discuss them with the teacher before school
begins. Sharing of information can prevent little
issues from becoming big problems.
* If you have questions or need help with Visual
Schedules contact our Visual Supports Specialist,
Kathy Robinson at krobinson@mbi.ufl.edu or 352/
392-4171 or 800/754-589.

Schol S n Dtes fr C
in th CAR UFGiesl Area


Alachua
Bradford
Citrus
Columbia
Dixie
Gilchrist
Hamilton


August
August
August
August
August
August
August


Hernando
Lafayette
Levy
Marion
Putnam
Suwannee
Union


August 8
August 8
August 8
August 8
August 16
August 5
August 4


SECOND ANNUAL 5K AUTUMN RUN FOR AUTISM
at SILVER SPRINGS
SATURDAY, SEPTEMBER 17 at 7:30 am
WILD WATERS PARKING LOT / OCALA, FL
Benefits New Horizon Academy for Exceptional Children
First 200 entrants receive complimentary custom shirts
Everyone can enjoy a free 1-mile Kids Fun Run/Walk
Post-race raffle and refreshments
Discounted admission to Silver Springs Italian Festival
Race day registration begins at 6 am
Adults $15 / Students $12
All entries after September 13 are $20
To register visit Ocala Sports or Compass Fitness
Online registration available at www.active.com
For additional information call 352-624-3540
Or visit www.ocalarun.org
Part of The Central FL Road Warrior Grand Prix Series





C re R a P at -o i by Gre Valca


Project GATORSS
Project GATORSS is a research grant funded by the
U.S. Department of Education, Office of Special
Education and Rehabilitative Services. The purpose
of the project is to assess socially problematic
behaviors of young children (ages 2 5 years old)
diagnosed with Autism Spectrum Disorder (e.g.,
Autism, PDD-NOS, Asperger's Syndrome) and
develop interventions to increase their appropriate
social behaviors. Participants are young children
diagnosed with ASD who are having social interac-
tion difficulties with other children. Social interac-
tion difficulties may include withdrawn behaviors,
limited play behaviors, lack of appropriate play/
sharing behaviors, and/or behavioral excesses.
Individualized assessments and interventions are
developed and examined in natural settings. For
further information contact: Maureen A. Conroy,
Ph.D. (352-392-0701 x245) or email
(mconroy@coe.ufl.edu).

Study of children diagnosed with Autism and gas-
trointestinal problems (including chronic diarrhea
or constipation, bloating, gas, abdominal pain)
Dr. Tanya K. Murphy at the University of Florida
Department of Psychiatry is conducting research
to evaluate an investigational medication for
gastrointestinal problems in children with autism. If
your child is between 2 and 17 years old and expe-
riences some of the symptoms described above,
he or she may be eligible to participate in the
study. Research volunteers will receive study medi-
cation and medical care at no cost. To find out
more please call 352-846-1456.

Relationship of motor and cognitive functioning in
young children with autism.
The goal of this research is to link impairments in
motor functioning with specific types of cognitive
functioning in young children with autism. The
reason for this is that if we can more accurately
identify problems in very young children, we can
make better prognostic decisions, and begin
implementing appropriate treatments early. Re-
sults from the study will be among the first to estab-
lish an association between motor and cognitive
functioning. Information gained will lead to further
studies examining early identification of autism, as
well as treatment studies utilizing motor interven-
tions to improve both motor and cognitive func-
tioning in young children with autism. The study will
take a couple of sessions to complete. We will


interview you about your child's behavior. We will
also observe and assess your child's behavior,
including a series of play tasks that help identify the
symptoms of autism and give your child a brief
intelligence ("IQ") test. We will observe your child in
a play room and your child will also play some
simple computer games. On another day, we will
have you return to our motor testing lab where
your child will stand on a special floor that mea-
sures how much he or she moves or "wiggles" while
trying to stand still and we will watch how they
walk across a special floor. All of the assessments
are done in a playful manner to keep your child
from becoming frustrated. Children with a clinical
diagnosis of autism between the ages of 2 and 5
years old are eligible as long as they do not have
known medical, genetic or physical impairments.
For further information contact Dr. Krestin
Radonovich at 352-392-7928 or
kradonov@psychiatry.ufl.edu.

Restricted Repetitive Behavior in Autism (for 6-18
year old children)
Restricted, repetitive, and stereotyped patterns of
behavior comprise one of the core diagnostic
features of autistic disorder. Despite the clinical
significance of repetitive behavior, the literature
devoted to the study of this behavior in autism is
relatively small in comparison to the extensive
literature on other aspects of autistic symptomatol-
ogy. A wide variety of abnormal repetitive move-
ments and behaviors occurs in persons with autism.
Currently we know little about how these abnormal
movements and behaviors are linked in the case
of autism. The primary purpose of this study is to
compare children with autism to comparison
groups on a set of repetitive behavior measures, as
well as motor and cognitive tests. The testing
could be completed in one or more sessions, de-
pending upon what works best for your child. We
will also interview you about your child's behavior
and assess for symptoms of autism and have your
child complete a brief intelligence ("IQ") test. For
further information contact Dr. Krestin Radonovich
at 352-392-7928 or kradonov@psychiatry.ufl.edu.

Attentional Abilities of Children with Autism
Cara Kimberg in the University of Florida depart-
ment of Clinical and Health Psychology is studying
the attentional abilities of children with autism. The


(continued on page 4)







"24/7 A Story of true heroism found not in dramatic events, but in day to day struggles"

These words were expressed by the creators of a documentary film entitled "24/7"; Journalism gradu-
ate students Mary Fallon and Daniel Priest collaborated to produce this film as their master's thesis project
while attending The Documentary Institute in the College of Journalism and Communications at the University
of Florida. The film traces the story of two families' experiences of helping adults with developmental dis-
abilities meet the daily demands of life, all day each day, so they are able to live at home and avoid institu-
tionalization.

Daniel Priest became interested in the plight of families with disabled family members as a young
college student dating a woman whose brother had autism. He was able to see what life was like for the
family, and the difficulties they had accessing services and supports to help with care and teaching needed
skills. He and Mary Fallon contacted the Gainesville CARD to help them recruit families with adult children
with autism who had difficulties accessing and keeping their disability-based services. One of the two families
selected was an autistic adult and his family, longtime Gainesville CARD constituents, and Gainesville CARD
Associate Director Art Wallen provided technical support throughout the making of the film.

In the words of the filmmakers,
* 24/7 reveals a world invisible to most of us. Yet it is a situation many families deal with today,
and which many more will face tomorrow.
* 24/7 unfolds as a story of frustration, courage and joy, as parents and professional caregivers
cope with Florida's limited ability to provide desperately needed resources.
* 24/7 brings to light their struggle and demonstrates nothing is more potent than love.

The Documentary has been produced on DVD and is making its way to film festivals around the coun-
try and national advocacy organizations. The filmmakers will be releasing the documentary for general
viewing within the next 6 months. Anyone interested in finding out more about the film or the project can visit
www.247themovie.com.


(continued from page 3)


study requires a commitment of two visits each
lasting approximately two hours. Visit one is a
screening visit and your child will be administered
an IQ test and an academic achievement test.
The parent will be asked to complete some ques-
tionnaires. During visit two your child will be admin-
istered a battery of attentional measures. Within 4
weeks of visit two, you will receive a feedback letter
summarizing the results of the tasks and question-
naires at no cost to you. For further information call
Cara Kimberg at 352-273-5281 or
ckimberg@phhp.ufl.edu.

Alternative Treatments Survey
The University of Florida, College of Nursing requests
your participation in a study investigating the use of
alternative treatments in children with autism. The
goal of the study is to identify which treatments are
currently being used and treatments caregivers
might like to use. Information gained should facili-
tate further research into alternative treatments.
For further information contact Dr. Jennifer Elder,
PhD, RN, FAAN at 352-273-6359 or
elderjh@nursing.ufl.edu.


Pain Survey
The University of Florida, College of Nursing is also
investigating how children with autism experience
and express pain. Participation involves completing
a brief survey that takes only 5 to 10 minutes. All
responses will be kept anonymous. For further
information or to participate, contact Melissa Dodd
at 352-846-0724 or mkdodd@ufl.edu.

Project IFCAP (Improving the Future for Children and
Parents)
The University of Florida Department of Clinical and
Health Psychology is seeking families with develop-
mentally delayed children who have behavior
problems to participate in Parent Child Interaction
Therapy. The program helps parents learn skills to
manage their child's behavior and there is no
charge for participating. It is for children 3 to 6
years old. For more information contact Daniel M.
Bagner at the Child Study Lab 352-273-5239.





0 Info rmat i f F al 2005 New Library Adi 0ions


We have several training opportunities
already planned for the fall. We will continue
with our 'Survival Skills Series' format with new
topics in Gainesville and Citrus county and will
do our original 5-part Survival Skills Series in
Hernando County. For those of you who are not
familiar with our Survival Skills Series, they are
geared towards parents and professionals and
provide a basic overview of the title topic. We
hope that you will come out and join us for these
training sessions.
These training are FREE of charge, but we
do ask that you call (352-846-3455 or 800-754-
5891 ext. 5) or email Leannis Maxwell
(maxwell@mbi.ufl.edu) to register for any up-
coming training events so that we can plan
appropriately. Our policy is that we must have at
least five people registered for any training to
make it an efficient use of our staff time. We will
continue to send email reminders to those of you
on our email list. If you would like to be added to
our email list, please email Carole Polefko
(cpolefko@mbi.ufl.edu) .
We also accept training requests from
individuals and groups. Again, there must be at
least five people who will attend the requested
training. We will do our best to meet your spe-
cific training needs. If you would like to make a
training request, please contact Cathy Zenko via
email (czenko@mbi.ufl.edu) or phone (352-392-
4173 or 800-754-5891 ext. 3).
ALACHUA COUNTY
Survival Series Part II
8/23 IEPs
9/13 Literacy
10/11 Technology
11/8 Transition
Location:
CARD Office
806A NW 16th Avenue
Gainesville
6:30-8:30 pm
CITRUS COUNTY
Survival Series Part II
9/8 IEPs
9/22 Technology
10/20 Literacy
11/17 Transition
Location:
Citrus County School Board Bldg
1007 W. Main Street
Inverness
6-8 pm (continued on page 6)


450 Strategies for Success by Hammeken, Peggy
All By Myself by Mayer, Mercer
An Unexpected Joy by Sharp, Mary
Answer to Questions Teachers Ask about Sensory
Integration by Koomar et al
Appreciating Critical issues in Sexuality in Autism and
Developmental Disabilities by Kaesar, Fred
Ask and Tell: Self-Advocacy and Disclosure for People
with Autism Spectrum by Hone, R.E. et al
Asperger's Syndrome in Young Children by Leventhal-
Belfer, Laurie
Autism : Heartfelt Thoughts from Mothers by Lynne,
Judy
Bill Newell Show Special on Autism (Video) from
Hernando Instructional Television
CNN Special on Autism (Video)
Deciding What to Teach and How To Teach It by
Castagnera et al
Delicate Threads by Staub, Debbie
Focus on Autism and Other Developmental Disabilities
from The Division on DD of the CEC
Hopes and Dreams An IEP Guide for Parents of Chil-
dren with Autism Spectrum Disorder by Lentz, Kirby
How to Compromise With Your School District Without
Compromising Your Child by Mayerson, Gary
Just Go To Bed by Mayer, Mercer
Let's Talk Emotions by Cardon, Teresa
My First Signs (Video) from Two Little Hands Produc-
tions
My Friend with Autism by Bishop, Beverly
No Hitting! by Katz, Karen
Oliver Onion by Murrell, Diane
Opening Doors: Strategies for Including All Students in
Regular Education by Schaffner, C.A. & Buswell, B.E.
Pathways to Play! by Fuge, G. & Berry, R.
Serving Students with Autism in Inclusive Settings
(booklet) from CARD USF
Solving Behavior Problems In Autism by Hodgdon,
Linda
Songs of the Gorilla Nation by Prince-Hughes, Dawn
Teaching Children with Autism
Teaching Kids with Learning Difficulties in the Regular
Classroom by Winebrenner, Susan
The Hidden Curriculum by Myles et al
The New Social Story Book by Gray, Carol
The Paraprofessional's Guide to the Inclusive Class-
room by Doyle, Mary Beth
The Teacher's Guide to the Four Blocks by
Cunningham et al
The Curious Incident of the Dog in the Night Time by
Haddon, Mark
Views From Our Shoes by Meyer, Donald
Visual Strategies For Improving Communication by
Hodgon, Linda
What Adults with Disabilities Wish All Parents Knew by
5 Matlin, Marlee





(continued from page 5)
HERNANDO COUNTY
Survival Skills Series Part I
8/25 Everything you wanted to know
about ASD, but forgot to ask.
9/8 What are you trying to say? Under
standing and improving your
child's communication skills.
9/29 Why don't I fit in? Helping your
child learn unspoken social rules.
10/13 There is a reason that I am acting
this way. Understanding and pre-
venting challenging behaviors.
11/10 Squeeze me, spin me, swing me!
Meeting your child's sensory needs.
Location:
West Hernando Middle School
Family Center
14325 Ken Austin Pkwy
Brooksville 34613
6-8 pm
For more details about our training and training
offered by other groups in our area please visit our
website www.card.ufl.edu


m^i~Sii mmiiel rl iiiitute Up ida[te


We would like to thank Dr. Karen Erickson, Dr.
David Koppenhaver and Sally Clendon for
another very successful Literacy in Alternative
and Augmentative Communication summer
institute. Also, many thanks to the 30 parents
and educators who worked so hard and
learned so much during the week. We hope to
repeat this great opportunity again in 2006.


I Main It Thog al Da at th Thm *.kb Magi Gai I


For those of us who have kids with ASD and
related disabilities who love going to theme parks,
summers can be very busy and sometimes very stress-
ful. At our house we call Bryan the "Theme Park King",
and believe me, the Garlin's have a lot of experience
with making it through a day at the theme park. So, I
thought I would share some of the tips we use to make
our visit to a theme park much more enjoyable.
Bryan has a hard time waiting in long lines, so
we always get a handicap pass that allows us access
to the rides faster. The "Customer Service Center" at
most theme parks can take care of this for you. It's
usually necessary to get a letter from your doctor or
someone who works with your child stating the reason
you need this pass.
If you have a child for whom going to the
bathroom is an issue, find out where the "First Aide
Station" is located. They usually have a single bath


room where your child might feel more comfortable
and you may feel safer.
Making a schedule of the rides your child would
like to ride is also a good idea. Make sure to help your
child chose the rides he or she wants to ride the most
and try to put them on the beginning of the schedule.
Also, make sure the schedule isn't to long in case you
don't get to go through the whole park.
Lastly, remember to bring the things we need to
make our children happy wherever we take them;
snacks, water, sunscreen, poncho in case it rains and
extra clothes in case they don't like to be wet. And
remember, there are always crying children at a theme
park. Most of the time it's typical ones!
Most theme parks have web-sites with all the
information you need about their parks. Also, AAA has
brochures with the same information. Have Fun!


CAR UFGiesil Ofic Hours
The CARD ofic is "cosd uni 12PMo
Monay 0000 stf etns o ptr


Go t
wwwcad fled
fo inomto abou0t0
*curren news abuats
andreate dsabliie
-Ipor.rop









During a Hurricane call the Florida Emergency
Information Line:

(Durante un huracan Ilame telefonos de la information de Emergencia
de la Florida:)


TOLL FREE HOTLINE


The Florida Emergency Information Line is
a toll-free hotline (Ilame gratis) activated by 1 (800) 342-3557
the Department of Community Affairs /
Division of Emergency Management (Divisi6n de Administraci6n de Emergencias de
La Florida) at the time of an emergency. You can get information on road
closures and alternate routes, available/open shelters, shelters designed for
special needs patients and re-entry information once it is safe to return to the
affected area.


They also provide a website which links to an on-line shelter status database. Here you
can see up-to-date information on public shelters by county including special needs
shelters http://www.floridadisaster.org/citizen emergency info.htm

Disaster typically gives little warning Prepare now.



Before a Hurricane:

(Antes de un huracan:)

The State of Florida, through the Department of Health, has created a Family
Preparedness Guide that outlines steps for making a Family Plan and Supply Kit for
Disasters and Emergencies. It includes advice about special-needs family members and
children. The pull-out section also includes contact numbers for county information and
support.

"family preparedness guide":
httD://www.doh.state.fl.us/rw webmaster/DreDareenalish042.Ddf


"guia de preparaci6n para families" (Spanish):
http://www.doh.state.fl.us/rw webmaster/preparesp04.pdf

"gid pou prepare fanmi nou" (Creole):
http://www.doh.state.fl. us/rw webmaster/preparecreole04.pdf


The Family Preparedness Guides are available online at the web addresses listed
above. The following page contains important pieces of information excerpted from the
Family Preparedness Guides.



Copyright 2005, Department of Health, State of Florda. Produced and distributed by Early Steps, Florda's Early
Intervention System, as a service for families of young children with disabilities or developmental delays, early
intervention staff, and providers.


U


I


ChildirnW. M--lln l S.-'or-.











Those who have family members with special needs must take extra measures
to ensure their preparedness. The following are suggestions from the
American Red Cross and the Federal Emergency Management Agency
(FEMA). Families with special needs must carefully assess their options.
SThey should ask themselves the following questions:

Can we manage the entire needs of our family for three days with little or no outside assistance?
Can we meet any crisis or emergency on our own for that period of time?
Can we make decisions concerning our special needs without consultation or help for three days?
Do we have the supplies and equipment to meet our special needs for three days?

If the answer is "no" to any of the above questions, families must seriously consider evacuation
from their homes in the event of a disaster. Advance preparation should include how to evacuate
and where to relocate. Many areas have special needs shelters that are equipped with medical
staff and specialized equipment. In your preparation, check the shelters in your area and become
familiar with their locations, procedures and policies concerning how many people are allowed to
accompany the family member with special needs.

For more information about shelters before a disaster, call your local Red Cross office, or contact
your local county emergency management office to pre-register for a special needs shelter. See
the Family Preparedness Guide's center pull-out section for helpful county phone numbers.

SUPPLIES TO CONSIDER FOR SPECIAL NEEDS INDIVIDUALS
for respirators, other electric-dependent medical equipment or oxygen-make prior
arrangements with your physician or check with your oxygen supplier about emergency
plans
two-week stock of disposable supplies such as dressings, nasal cannulas, suction
catheters, etc.
two-week supply of medications, prescription and non-prescription
electrical backup for medical equipment
copies of prescriptions for medical equipment, supplies and medications-ask your
physician or pharmacist about proper storing of prescription medications
contact lenses and supplies or extra eyeglasses
extra batteries for hearing aids, communication

Assemble a kit for your children. Some suggested items:
few books, crayons and paper, puzzles, deck of cards
favorite small toy or a stuffed animal
favorite blanket, pillow
pictures of family and pets

Children's immunizations should be up-to date as early in life as possible to protect from vaccine-
preventable diseases, including an unexpected outbreak during a disaster.
Keep a copy of your children's complete immunization histories in your disaster kit
attached to the family emergency information.
All family members should also record the date of their last Tetanus-diphtheria shot in
this record.


Advice on communicating with children about Disasters is available from the American Academy Of
Pediatrics at www.aap.org.


Child-. M-ll-.nl SirI.


Copyright 2005, Department of Health, State of Florida. Produced and distributed by Early Steps, Florida's Early
Intervention System, as a service for families of young children with disabilities or developmental delays, early
intervention staff, and providers.



















That's a big question, and a very important ques-
tion. Your decisions can have a life-long influence on
your child's life.
First, picture your hopes for your child's future.
Start at his death and work backwards. I'll share the
picture for my son. On David's deathbed, I hope he'll
think thoughts like these:
I had a wonderful life. I'm proud of what I
accomplished. I have helped others. I felt loved
by my family and friends. I was lulfilled.

During David's adult years, I hope he'll think
thoughts like these:
I make a difference in this world. I have a
meaningful job that is important to me. I have
family and friends who love and support me. I am
respected for my opinions and I'm responsible for
my choices. I am happy with where I live.

During David's childhood, I hope he'll think
thoughts like these:
I love school. I love to learn. I enjoy my friends. I can
communicate with my friends, teachers, and family.
I can get my point across! I have fun! I am included
and never feel separated. I feel whole. I do not feel
I am "sick" or "inferior to others, just because I am
different. My family loves and respects me for who I
am. I am David-maybe I'm a little different, but I'm
just as beautiful and wonderfully-made as all other
kids. So I have autism-you wear glasses and have
a goofy nose!

Second, think about what it will take to turn
hopes into realities. What are the barriers? What will
your child need to learn to achieve the pictures you've
described?
My process went like this: David has two particular
needs that may be potential barriers: communication


skills and social skills. I know that behaviors are tied to
social skills. I also know that his behaviors are considered
"less socially acceptable" when he cannot communicate
with others. I know he's smart. I need to support his
thinking skills, while simultaneously enhancing his
communication and social skills.
If David cannot communicate with everyone-not
just people who know him well-he won't have a chance
in the real world. If he cannot maintain "socially ap-
propriate behavior," he will not be successful outside of
our home or other "protected" environments.
Third, what kind of environments will be needed
to support the development of your child's needed
skills? In our case, environments must be responsive to
David's needs. Sometimes he needs simplification, such
as reduction of sensory distractions and transitions, as
well as not overloading him with too much information.
Sometimes he needs to be encouraged to achieve a goal,
while simultaneously having a support to fall back on
if he feels over-challenged. Environments need to sup-
port his successes, not failures. Whatever enables him
to experience success needs to be in place.
Most of the time, David needs to be with others,
including people who know him and those who don't,
as well as people who know how to support him, and
those who don't. That's the real world! He needs to
learn, in his own time and space, how to succeed in
the real world. He needs to learn to recognize when he
is being overwhelmed and how to take appropriate ac-
tions. We need to respect his communication in this so
he will not fail. That is the best method for achieving
"socially appropriate behavior." Will it always be pretty?
No. When is the best time to work on it? When he is
young and the world is the most forgiving. This is one
thing we cannot save until later, because learning "social
appreciation for others" is a long process.
David needs an environment that requires him
to communicate. Does he need supports? Yes. Visual
supports, communication supports, and continuity


True Lives

How Do I Decide What Approach to

Take With My Child Who Has Autism?
by Dee Blose

Revolutionary Common Sense from Kathie Snow







2 Dee Blose on Autism

across all environments are critical while he's learning
to communicate effectively.
Fourth, what approaches will provide your child
with the tools he needs to be fulfilled and happy in the
real world?
In our case, the people in David's life who are re-
sponsible for "helping" him (teachers, service providers,
family members, and others) need
to support him to be successful in The ones wl
all that he does. Support techniques are th<
must always be respectful of him, They al
and his needs and wants-never humal
humiliating, demeaning, abusive, Lakot
harmful, or hurtful. Others should
be respectful of the fact that each of us has "a bad day"
now and then. Approaches must always be humane,
and must never resemble the inhumane methods that
are sometimes used on prisoners or animals.
David needs to be included in everything with
other kids his age, including school and other activi-
ties-and not stuck in a corner with adult helpers. And
he needs individually-designed supports to ensure his
success. He does not need to be singled out as "special;"
that contributes to him feeling "different."
David also needs to be given the same opportuni-
ties as other kids: the opportunity to "mess up" and to
learn from mistakes so he knows that failure is part of
life. He needs the opportunity to be "laughed at" (just
like other kids, and within reason), so he can strengthen
his backbone. David needs the opportunity to be with
others who have wants and needs, so he can learn the


world doesn't revolve around him. He needs opportuni-
ties to be helpful, so he can learn concern for others.
Children without disabilities learn these things
through typical life experiences in natural environments.
David needs to learn these things in the same ways. He
will not learn real-life experiences in an artificial, fake
environment. We all learn by really "being there." Any
child, if isolated from the real world, will suffer the
consequences. David is no different.
matter most The key to his success is to ensure
children. he's supported in the natural envi-
the true ronments of the real world.
eings. Finally, the best gift you can
overb give your child is love-and not just
love for him, the love for your family
and friends. One day you will be gone. Will you leave
him a lasting legacy of family and friends who love and
care about him after you're gone? Or will he be alone,
because he depended only on you for everything, and
neither he nor anyone else has any idea how to support
his needs? Worse, will you leave bitter children who
feel, "All Mom ever cared about was my brother with
autism."?
Think about the future and consider all these
things. Think about your whole family. You may feel
your other children don't need you as much as your child
with autism does. But that's not true. They need you
just as much, and their futures are also at stake.
Listen to your heart. Don't embrace
information you feel uncomfortable with. Take care of
all your children. And when you die, you can say, "I
gave it my best. I had a good life. I am fulfilled."


Dee and Keith Bose are the parents of Amy, David, and Justin. David is a 13-year-old seventh grader whose favorite subject
is science. He loves video games (especially Harry Potter), books, and shopping at thrift stores! Dee is Executive Director of
Youth and Family Services in her Oklahoma community, and is also a Family Faculty Adjunct Professor and co-instructor in the
web-based PTIOT Master's program at the University of Oklahoma.
Dee originally wrote this article at the request of OU Early Intervention personnel, to provide parents of young children
with autism with information that can promote long-term thinking. Dee added, "I have been dismayed at much of the information
distnbuted to parents of children with autism. I feel many of the interventions being promoted are short-sighted, don't consider the
entire family, and are basically inhumane to the child. My thoughts are not meant to bash any program or intervention method,
but to ask parents to think about the future of their whole families in making long-term decisions." Dee can be contacted via Email
at dab333@wans net My thanks to my friend, Dee, for allowing me to share her article with others.

@ 2003-2005 Kathie Snow. Permission is granted for non-commercial use of this article: you may photocopy to share with others.
As a courtesy, please tell me how/when you use it: kathie@disabilityisnatural.com. Please do not violate copyright laws: request
permission before reprinting in newsletters or other publications To learn more new ways of thinking, to sign up for the Disability
is Natural Email newsletter, or to see products that promote positive imas, visit:
^Qa -a 0s


ho
I cl
re
nb
a Pr




University of Florida Home Page
© 2004 - 2010 University of Florida George A. Smathers Libraries.
All rights reserved.

Acceptable Use, Copyright, and Disclaimer Statement
Last updated October 10, 2010 - - mvs