Transcript the importance of family support and good self-care

Patricia Matestic, Ph.D.
Director & Clinical Psychologist
University of Washington Autism Center Tacoma (UW-ACT)
Lewis County Autism Coalition Conference
October 16, 2015
About Me
 Grew up as a military brat – father in USAF
 Moved to Tacoma in 1985 – South Sound “native”
 Education & Training
 UW, Univ. of Pittsburgh, Seattle Children’s, Madigan
Army Medical Center, UW-ACT
 My autism experience and expertise
 Personal interests
 Travel, gardening, binge watching series, hiking,
cooking
Overview
 Autism Spectrum Disorders – an overview
 Processing the diagnosis
 Changes to the parental role
 Impact of caring for a child with ASD
 Parental stress implications
 Barriers to self-care
 How to practice good self-care
 Self-care tips
 Resources
Autism Spectrum Disorders:
An Overview
 Autism Spectrum Disorders (ASD)
 A neurodevelopmental disorder with lifelong impact on
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Social communication – verbal & nonverbal
Social interaction
Restricted and repetitive behaviors and interests
May include unique skills or strengths
Physical and Medical Problems
which often Co-Occur with Autism
 Genetic Disorders
 Seizures
 Gastrointestinal Disorders
 Chronic constipation
 Reflux
 Sleep difficulties
 Sensory Integration Difficulties
 Pica
Processing the Diagnosis
 Grief Reaction
 Range of emotions & mixed feelings:
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Shock
Sadness
Anger
Denial
Loneliness
Acceptance
 Different for everyone
 When do you need professional help?
Changes in Parenting Role
 Mothers may :
 Feel overwhelmed with everyday responsibilities
 Feel pressure to become autism expert
 Worry about family’s future
 Have difficulty finding life balance
Changes in Parenting Role
 Fathers may:
 Be less inclined to share feelings
 Become stressed about family’s finances
and unknowns of situation
 Worry about child’s long term future
 Develop other problems (i.e., stress/anxiety) which affect
work, marriage
Issues for siblings
 Siblings may
 Not understand what is wrong with their sibling.
 Have feelings of jealousy/resentment
 Feel angry over unequal treatment over discipline and
chores
 Feel embarrassment with friends or in community
setting over sibling’s behaviors
 Feel frustrated they are unable to get their sibling to
respond or interact with them in “normal” ways
 Worry about family members
The Impact of Caring for
a Child with ASD
 Increased parental stress as compared to parents of
typical developing children or children with other
developmental disabilities (Estes, et. al., 2009; Baker et. al., 2002;
Dumas et. al., 1991).
 More symptoms of anxiety & depression (Dunn et al., 2001;
Dumas et al., 1991).
 Less psychological well-being (Abbeduto et al., 2004).
 Less marital satisfaction (Konstantareas & Homatidis, 1989).
 Job related stress and career limitations (Montes &
Halterman, 2008).
 Limited family outings and vacations (Hutton & Caron,
2005)
Factors Associated with
Parental Stress
 Severity of ASD symptoms
 Child characteristics
 Age of child
 Intellectual ability
 Adaptive skills (e.g., toileting, bathing, dressing)
 ADHD symptoms
 Behavior problems (e.g., aggression)
 Caretaking demands
 Lack of therapeutic resources
Negative Outcomes of
Parental Stress
 Increased health risks
 Decreased well-being & life satisfaction
 Less present for your child/family
 Impacts parenting skills
 Does not model healthy coping skills for your children
 Higher parental stress shown to reduce effectiveness of
early teaching intervention programs (Osbourne et al.,
2008).
IF YOU WANT TO TAKE CARE OF
YOUR FAMILY …
YOU MUST FIRST TAKE CARE OF
YOURSELF!!!
Common Barriers to Self-care
 Guilt
 Time management – how to prioritize
 Lack of additional support
 Financial constraints
 Limited knowledge or information
 Self-efficacy
How to care for yourself
 Practice good self-care
 Ask yourself where does my support and strength come
from?
 How am I really doing?
 What do I need?
 Do I know who to ask for help?
 Give yourself time to adjust
 Continue family rituals
 Talk to family and friends
Self-care tips:
 Start with the basics:
 Sleep
 Exercise
 Nutrition
 Find your Bliss
 The Big List of Pleasurable Activities
 Improve the Moment Skills
 Quick things to make a moment better
Improve the Moment
 Imagery – imagine relaxing scenes, imagine things going
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well, imagine difficult emotion draining out of your body
Meaning – find some purpose for situation. Make lemons
out of lemonade
Prayer – turn things over to your higher power; utilize
religion
Relaxation – tense and relax large muscle groups, exercise
hard, take a hot bath, drink warm beverage, breathe deeply,
create a relaxation plan
One thing in the moment - Focus your entire attention on
just what you are doing right now. Keep yourself in the
moment, mind in the present
Self-soothe using your 5 senses
 Taste – have a good meal, tea, coffee, smoothie, treat
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yourself to dessert, put whipped cream on your hot
chocolate or coffee
Touch – Take a bubble bath, have a massage, soak your
feet/pedicure, put lotion on your whole body
Vision – buy one beautiful flower, enjoy nature, fix your
nails, look at pictures in a book
Hearing – Listen to soothing music, books on tape, pay
attention to sounds of nature (bird songs, rain, leaves
rustling)
Smell – use your favorite perfume or lotion, spray
fragrance in the air, light a scented candle, bake cookies
More Self-care Tips
 Utilize respite care or childcare options
 Explore interests outside of autism
 Therapy – individual, parenting, marital
 Focus on positive
 Get involved with Autism Community
 Form a Support Network
Building a Support Network –
Marital Relationship
 Keeping Your Marriage Strong
 Communicate!
 Talk openly about problems
 Be kind to yourself and your spouse
 Work together
 Stay in the present
 Spend time together
 Share responsibilities at home
 Get help if you need it
Building a Support Network –
Sibling Support
 Provide siblings with resources to better understand
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autism
Help siblings learn how to play and form relationships
with their brother or sister. For example, show them
how to get their brother or sister’s attention.
Find local sibling support groups (e.g., sib shops)
Provide quality alone time with parents
Consult a professional, if needed
Building a Support Network –
Friends and Community
 Extended family – move closer to family for extra
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support
Nurture friendships
Faith based support - church
Social Networking –find support online
Local support groups
Recreational programs for children with autism
Resources - websites
National Autism Support Agencies:
 Autism Speaks
 www.autismspeaks.org
 Autism Society
 www.autism-society.org
Local Autism Support Agencies:
 PAVE – Partnerships for Action, Voices for Empowerment
 www.wapave.org
 FEAT – Family for Effective Autism Treatment
 www.featwa.org
 ARC – For people with intellectual and developmental disabilities
 www.thearc.org
 WAAA – Washington Autism Alliance and Advocacy
 Legal counsel and advice; www.washingtonautismadvocacy.org
 Autism Outreach Project
 www.nwesd.org/autism
 Exceptional Families Network –
 www.exceptional-families.org
 Lewis County Autism Coalition–
 www.lcautism.org
Resources – online support groups
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www.myautismteam.com
http://www.treatmentdiaries.com/
http://specialneedsmomsformoms.com/
http://mdjunction.com
Yahoo groups – Autism lifespan project
 [email protected]
 The Square Peg Social Club Adult Asperger’s and
Other Misfits
 http://www.meetup.com/squarepegs/
Resources - books
 The Autism Mom's Survival Guide (for Dads, too!): Creating a Balanced and
Happy Life While Raising a Child with Autism by Susan Senator
 More Than a Mom by Amy Baskin and Heather Fawcett
 Finding Our Way: Practical Solutions for Creating a Supportive Home and
Community for the Asperger Syndrome Family by Kristi Sakai
 Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special
Children by Gina Gallagher and Patricia Konjoia
 Helping Your Child with Autism Spectrum Disorder: A Step-By-Step Workbook for
Families by Locksin, Gillis, and Romanczyk
 Thoughts and Feelings: Taking Control of Your Moods and Your Life by McKay,
Davis, and Fanning
 The Relaxation and Stress Reduction Workbook by Davis, Eshelman, and McKay
Questions
My Contact Info:
Patti Matestic, Ph.D.
Director & Clinical Psychologist
University of Washington Autism Center- Tacoma
Office: (253) 692-4719; Fax: (253) 692-4718
Email: [email protected]
http://uwautism.org