1. Impact of having a child with complex needs on the family:
The importance of self-care

2. WHAT WE want to talk to you about...
What research tells us about stress & our ability to cope
Things that can compound our stress & ability to cope
The importance of self-care and knowing your own needs, the needs of your child and your family to create a “Good Life”

3. What we know...
The physiological, psychological, and social relationships between parents and their children “may well be the most intense life can generate.” (Jackson, 1977) And, when a family has a child with complex needs the impact is even greater.

4. Research tells us the following...
Theoretical Models of family stress and adaptation grows from the interaction of family response to a particular crisis depending on the:
Type of stressor (event)
Support systems around the family
Family’s perspective of the impact, and
Prior crises (…and resources/support/perspectives of those events) Hill, 1949; McCubbin & Patterson, 1983

5. Research also tells us…
When families have the resources they need, they are better able to adapt to adversity by coping with stress and minimizing distress. McCubbin & Patterson, 1983 Issue of fight or flight

6. Most importantly, research tells us…
Researchers have concluded that…
parents whose children have any type of disability or illness report higher levels of both emotional and physical stress than parents whose children are healthy.
State of chronic stress?
Carnevale, Alexander, Davis, Rennick, & Troini, 2006; Dellve, Samuelsson, Tallborn, & Lillemor, 2006

7. Traumatic Events and Chronic Stress

8. The Importance of Family Support
Family support ideally benefits all members of a family, builds on existing social networks, enhances coping in response to adverse situations, and maximizes a family’s control over services since the family should be considered the expert regarding their child. Dunst et al., 1993
Be informed
Be supported with choice

9. Family-centered Approach: Family Systems Model
Families are called on to be experts in major areas of the systems they must work with to provide for their child with complex needs.
Each system is complex. Parents must understand their child’s needs and where and why the system will provide for the child’s need, learn the language, learn who and what type of professionals and their roles are, the ‘rules of engagement,’ and the coordination with other systems.

10. Family Leadership Development Change agents (Self-Determination) Bridging the gap between a family’s desire to improve the quality of life for children and building skills to do so. E. Forenza

11. Family Leadership Development (2 of 6) Bridging the gap between a family’s desire to improve the quality of life for children and building skills to do so. E. Forenza

12. Family Leadership Development (3 of 6) Bridging the gap between a family’s desire to improve the quality of life for children and building skills to do so. E. Forenza

13. Family Leadership Development (4 of 6) Bridging the gap between a family’s desire to improve the quality of life for children and building skills to do so. E. Forenza

14. Family Leadership Development (5 of 6) Bridging the gap between a family’s desire to improve the quality of life for children and building skills to do so. E. Forenza

15. Family Leadership Development (6 of 6)

16. IMPORTANCE OF CONNECTION
“Our most basic need in life is for relationships- connection” Brene’ Brown
Your child
Immediate family members
Extended family
Providers
Your community
Other parents and families

17. What is Self-care? Taking time to connect and care for self.
…doing little things here and there, wherever you can, to make sure you are looking after your own wellbeing. CP NOW
Self-compassion: we give ourselves the same kindness and care we would give to a good friend. K. Neff

18. Why is Self-care Important?
Post-traumatic Growth (PTG):
Enables you to be more resilient through challenging times
Provides an opportunity for self-reflection and contemplation
Without taking time out for yourself, it can compromise your physical and mental health and possibly live day to day in a state of chronic stress
How often do you take time for yourself?
What do you do for self-care?
What things do you do with other family members?
What things do you do with friends?
What will it take for you to have time for you to “fill your cup?”
GROUP SHARE OUT: Participants share their favorite thing they do to take care of themselves

19. Thoughts on Self-care…
Acknowledge areas of grief and trauma
Awareness of your own needs and triggers
Work on healthy boundaries

20. Self-care and Healthy Boundaries…
Connection with others includes setting healthy boundaries •Define what responsibility we have to others and •What responsibility we need for ourselves
Take time to think about what responsibilities you have for others and responsibilities you have/need for yourself.

21. Maintaining Healthy Boundaries
Truths – about who you are – values and beliefs, integrity, character
Words – How you use your words gives people a message of how you conduct relationships
Other people – support system
Strength to say no
Strength to receive

22. Why Have Healthy Boundaries?
Keeps us from not blaming others and taking responsibility for our own feelings, thoughts, beliefs, memories, choices, experiences, and actions
Helps us in allowing others to take responsibility for themselves – not for other people’s thoughts, feelings, behaviors
Internal Boundaries are invisible lines in our relationships that we create to protect ourselves.
As family members of an individual with combined vision and hearing loss, these boundaries can often get lost or blurred which, in turn affects relationships and our ability to take care of ourselves.

23. Consequences of Unhealthy Boundaries
Burn out
Compassion Fatigue
Secondary Trauma
Trauma Exposure Response

24. More Thoughts on Self-care…
Reflection and writing your story
Share your story – connect with others
Practice empathy – reach out to others

25. More Thoughts on Self-care continued
Search for gratefulness and celebrate with joy and compassion
Be kind to yourself – Self Compassion Test:
Practice mindfulness – STOP – breath

26. Mindfulness Defined
…Awareness that results from purposefully paying attention to sensations, thoughts, and feelings in the present moment while suspending judgement.
Kabit-Zinn, 2003; S.R. Bishop & L.M. Shapiro, 2004

27. Benefits of Mindfulness
Stress
Anxiety
Blood pressure
Depression
Pain
Immune system
Relaxation response
Executive functioning
Ability to sustain attention
5 weeks of mindfulness training for parents and teachers of children with special needs resulted in significant reduction of stress and anxiety. Benn, et al. 2012

28. Neuroplasticity ‐ Brain changes that occur in response to experience
Benefits to higher order cognitive functioning:
Attention regulation
Body awareness
Emotion regulation
Changes in perspective on self

29. An Informal Mindful Practice
•Stop •Take 3 mindful breaths •Observe •Proceed

30. Your calm is your most powerful intervention!
If you are in tune with yourself, you can be in tune with your child.
If you are in tune with your child, you are supporting brain development in a very real way. You are teaching self‐regulation. You are decreasing family anxiety and fear.

31. In Closing… Be kind to our self Be present, STOP and breath
Tend to our own worthiness – love and belonging
Practice making connections
Be engaged. Are we paying attention? Thinking through our choices? Curious and willing to ask questions? Open to learning and being wrong?

32. “Courage transforms the emotional structure of our being
“Courage transforms the emotional structure of our being.” Brene’ Brown, Rising Strong
A few rules of engagement for being courageous – trying, falling down, rising stronger:
The journey belongs to no one by you; however, no one successfully goes it alone
We are wired for story
Creativity embeds knowledge so that it can become practice

33. More rules of engagement for being courageous Brene’ Brown, Rising Strong
Comparative suffering is a function of fear and believing you are not enough.
Courage is contagious
“Grace will take you places hustling can’t.” Liz Gilbert

34. Resources and References
Boundaries: When to Say Yes, How to Say No to Take Control of Your Life, Henry Cloud & John Townsend, 1992
Brown, Brene’, Daring Greatly, 2012
Brown, Brene’, Rising Strong, 2017
Center for Healthy Minds ‐ movement
Greater Good ‐
Guided Practice Apps:
Calm – Meditate, Sleep, Relax
Headspace: Meditation & Mindfulness
Stop, Breathe, & Think: Meditation & Mindfulness

35. More Resources
Harvard Health:  - healthy/understanding-the-stress-response
Trauma Stewardship: An Everyday Guide to Caring for Self While Caring for Others, Laura vandernoot Lipsky with Connie Burk, 2009
Speaking the Truth in Love, Ruth Koch & Kenneth Haugk, 1990
UCLA Mindful Awareness Research Center:

36. Other References Benn, et al. 2012 Bishop, S.R. & L.M. Shapiro, 2004
Carnevale, Alexander, Davis, Rennick, & Troini, 2006
Dellve, Samuelsson, Tallborn, & Lillemor, 2006
Doka, K.& TL Martin, 2011
Dunst et al. 1993
Hill, 1949
Jackson, 1977
Johnson, B. & Patrick, T., University of Arkansas Medical Sciences, Department of Family and Preventive Medicine, Research and Evaluation Division (RED).
Kabit‐Zinn, J., 2003
McCubbin & Patterson, 1983
Weiler, N. W & Schoonover, M. D., 2001

37. Contact Information
Jana Villemez, LCSW Family Consultant CAYSI – Children And Youth with Sensory Impairment
The content of this publication was developed under a grant from the US Department of Education, #H326T However, the contents do not necessarily represent the policy of the US Department of Education, and you should not assume endorsement by the federal government. Project Officer, Susan Weigert