Caregiver Workshop Coping with the Unique Challenges of Adults with Brain Disease University of California, San Francisco Mission Bay Campus

Today’s Agenda (30min) Understanding who is here What the research has to say How brain disease affects children’s development A Framework for Parenting with a disability What is out there for help

Who is here?

Research: Brain Disease and Parenting Very few studies that address brain disease and parenting Immediate impact of impairment significantly affects the children and caregiver. Depression – in child and/or parents Altered routines Lack of attention Increased marital conflict Loss/altered personality/disability Increased stress (time, money, uncertainty) “My kids were born before my brain injury. Now I’m afraid I’m not a good enough parent.”

Long term effects of Brain Injury Long term there is little evidence that brain injury effects parenting skills or children's adjustment (one exception is higher levels of depression). However, parents saw themselves as less accepting of their children, less able to express positive feelings toward their children, less encouraging of their children’s skills putting less pressure on their children to be orderly and conforming. Their spouses rated themselves as less loving and accepting Children DISAGREE, except less insistent on the child’s following rules and standards

Silverlinings Every study mentions the possibility of benefits that come to the children. “Well, I’ve found that in some ways my TBI has turned out to be useful. For example, I have to keep myself so well organized that my kids are learning this from me.”

A Framework for Parenting Developmental Tasks 0-6 Developmental Tasks 6-12 Developmental Tasks Disease Impact and Course

Example 1 Symptom: Difficulty organizing 18 month – 3 years Importance of routine Dependence on care (food, hydration, hygiene) 6 – 12 years developing a sense of mastery Internalizing rules developing responsibility learning many new skills, 13 – 18 years establishing identity separating emotionally experimenting with different values and deciding their own values

Example 2 Symptom: Difficulty with Emotional Control 18 month – 3 years Learning Self regulation Dependence on care (food, hydration, hygiene) 6 – 12 years developing a sense of mastery Internalizing rules developing responsibility learning many new skills, 13 – 18 years establishing identity separating emotionally experimenting with different values and deciding their own values

Example 3 Symptom: Parental Depression 18 month – 3 years Learning Self regulation Dependence on care (food, hydration, hygiene) 6 – 12 years developing a sense of mastery Internalizing rules developing responsibility learning many new skills, 13 – 18 years establishing identity separating emotionally experimenting with different values and deciding their own values

Aspects of Parenting Emotional State of Parent Physical State of Parent Parent Skills

Aspects of Parenting Emotional State of Parent Physical State of Parent Parent Skills

My Internal State What was I thinking? “My child/ I shouldn’t act that way.” “There is something wrong with my child/me” ““My child is bad.”, “I am a bad parent.” “I can’t be a good parent because of this %^$^% disease.” “My child won’t be okay because of the %^$^% disease.” How was I feeling? Angry, Sad, Anxious, Worried, Helpless, Hopeless, Guilty, Inferior, Lonely, Ashamed, Embarrassed What do I do? Withdraw, lash out, beat myself up, apologize,

Breaking the Cycle ThoughtsFeelingsBehaviors “I am useless as a parent.” “Sad, hopeless, helpless Withdraw, Lax parenting style, “Its true that I have significant challenges. But I have also developed tremendous resilience that I can pass on to my kids.

Aspects of Parenting Emotional State of Parent Physical State of Parent Parent Skills

Learning New Skills

Video Segment Triple P Example of Learning New Parenting Skills

Problem Solving Physical Challenges Energy Level Physical impairments that interfere with affect Example ability to pick up or huge a child Motor impairments Solutions require: Support Creativity, thinking outside the box. Collaboration Accessing resources

Conclusion and Summary Significant, intense and difficult challenges facing caregivers that have neurological impairment Emotional, Behavioral and Systemic Developmental needs of children are affected by the nature and the stage of the illness. Opportunities for seeking help Emotional Realm Parenting Skills Support resources

Helpful Resources Therapy Support Groups Peer support Social Support