Life in Life in HarmonyHarmony

Dr. Evisha Ford-Sills & Nicole Todd-Melquist

Culture of StressCulture of Stress

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

Caregiver Caregiver FatigueFatigue

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 Caregiver Fatigue Fatigue

Prevention 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 "reality-check" 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 Caregiver Fatigue Prevention Con’tPrevention 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 ResourcesSystems Resources

School-Based School-Based ResourcesResources

Preparing for life after Preparing for life after school…school…

Transition Services•Importance of planning early

o PUNSo Guardianshipo 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/Post-Secondary/Adult ServicesAdult ServicesInvestigate available options and the types of support needed for success prior to graduation/aging out:oCollegeoSupported EmploymentoDevelopmental TrainingoResidential servicesoRecreational programsoNon-traditional supports:

• Microboards• Cooperatives• Home-based programs, etc.

Hope in an imperfect system…

Goal: Personal SuccessGoal: Personal Success(individual definitions may vary)(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 Tips for parents and professionals: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/Treatment/MethodologiesMethodologies

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/Treatment/MethodologiesMethodologies

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 We also thought you would like to learn about…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.orghttp://idoinautismland.blogspot.com

RPM success:Special Guests - Bob, Sue, and Ann Hamlin

Ann’s PoemAnn’s PoemTroubled honest pastHorrifying thought beginsHow to not become dark cloudthundering in the chaosIt begins pounding in my headHow to have someone understandWishing to God my voiceopens like a youthful tree in spring What if the waves insidenever stop rocking the boat of lifeHow does one live through each storm?Hope to become understood

Q & AQ & A