Life in Harmony
Dr. Evisha Ford-Sills & Nicole Todd-Melquist
Culture of Stress
30% of
employees often
feel burned out
or stressed by
their jobs
42% feel used up at the end of the work day
27% feel emotionally drained from their work
Source: Five-year study of the American workforce conducted by the Families and Work Institute
Role confusion: Many people are confused
when thrust into the role of caregiver. It can
be difficult for a person to separate her role
as caregiver from her role as parent.
Lack of control: Many caregivers become
frustrated by a lack of money, resources,
and skills to effectively plan, manage, and
organize their loved one's care.
Unreasonable demands: Some caregivers
place unreasonable burdens upon
themselves, in part because they see
providing care as their exclusive
responsibility.
Other factors: Many caregivers cannot
recognize when they are suffering burnout
and eventually get to the point where they
cannot function effectively.
Caregiver
Fatigue
Caregiver Fatigue
Prevention
• Take advantage of respite care
services. Respite care provides a
temporary break for caregivers.
(e.g., Good Shepard, iCan Dream
Center)
• Know your limits and do a "realitycheck" of your personal situation.
Recognize and accept your
potential for caregiver burnout.
• Educate yourself. The more you
know about Autism, the more
effective you will be in caring for
your child.
• Stay healthy by eating right and
getting plenty of exercise and
sleep.
• Develop new tools for coping.
Caregiver Fatigue
Prevention Con’t
• Find someone you trust to talk to about your feelings
and frustrations.
• Set realistic goals, accept that you may need help
with caregiving, and turn to others for help with
some tasks.
• Don't forget about yourself because you're too busy
caring for your child. Set aside time for yourself,
even if it's just an hour or two. Remember, taking
care of yourself is not a luxury. It is an absolute
necessity for caregivers.
Systems Resources
School-Based Resources
Free Appropriate
Public Education
Least Restrictive
Environment
Related Services
Transportation
Extended School
Year
Preparing for life after
school…
Transition Services
• Importance of planning early
o PUNS
o Guardianship
o Individualized Transition Plans – should drive the IEP
• IDEA/Indicators 13 and 14
• Invite people who are/will be part of your child’s support
network (DRS, adult service organization representatives, PAS,
advocates, etc.)
o Understand the difference between entitlement (school) and
eligibility (adult services) programs and prepare
• Investigate funding options
• Be aware of waiting lists
• ADVOCATE
Post-Secondary/
Adult Services
Investigate available options and the types of support
needed for success prior to graduation/aging out:
o
o
o
o
o
o
College
Supported Employment
Developmental Training
Residential services
Recreational programs
Non-traditional supports:
• Microboards
• Cooperatives
• Home-based programs, etc.
Hope in an imperfect system…
Goal: Personal Success
(individual definitions may vary)
Tips for parents:
• Surround yourself with people who can recognize
and appreciate who your child is and what they
have to offer
• Challenge the system when necessary
• Be confident in your knowledge and abilities – you
know your child best and will be his/her best
advocate
• Build a support system and do not be afraid to
access available resources
Tips for parents and professionals:
• Educate yourself about interventions and teaching
methodologies (resource slides to follow)
• Individualize – the autism spectrum is vast and
needs vary; personal interests and strengths should
be integrated into programming
• Presume competence and keep expectations
high…people with autism often know more than
they are able to communicate
• Promote respect and dignity
• Do not be discouraged when you don’t get
immediate results – you must be consistent and
persistent
Treatment/Methodologies
Applied Behavior Analysis (ABA)
• scientific approach to understanding behavior and how it is
affected by the environment
• Principles – reinforcement, prompting, fading shaping, etc.
• Proven effective in improving communication, social relationships,
play, self-care, and academic/work skills
Association for Behavior Analysis International – www.abainternational.org
TEACCH –
•
Structured Teaching
• accommodates individual needs - encourages the instructor to build
on an individual’s interests, strengths, and learning styles
• focus is on organization, structure, modified environments and
activities
• emphasizes use of visual support systems
• structure and predictability promote independence, help reduce
anxiety, and keep expectations clear
Division TEACCH (UNC) - www.teacch.com
Treatment/Methodologies
Visual Suports
•
•
•
•
•
increase an individual’s ability to communicate (receptive and
expressive)
help with processing
reduce anxiety by helping to anticipate what is coming next and
prepare for changes
increase independence by decreasing staff/parent prompting
Examples: schedules, social stories, communication books/boards,
task analysis, choice boards, reinforcement programs, etc.
Communication Training
•
Total Communication • Verbal/written language
• Pictures/PECS
• Sign Language
• Augmentative and Alternative Communication/Assistive
Technology
We also thought you would like
to learn about…
Rapid Prompting Method (RPM)
• An educational tool that, when consistently used,
improves communication
• Prompting competes with self-stimulatory behavior and is
designed to help students initiate a response
• Reinforces choice-making and motor-planning
www.halo-soma.org
http://idoinautismland.blogspot.com
RPM success:
Special Guests - Bob, Sue, and Ann Hamlin
Ann’s Poem
Troubled honest past
Horrifying thought begins
How to not become dark cloud
thundering in the chaos
It begins pounding in my head
How to have someone understand
Wishing to God my voice
opens like a youthful tree in spring
What if the waves inside
never stop rocking the boat of life
How does one live through each storm?
Hope to become understood
Q&A