Good Grief: Understanding Your Feelings When Your Child Is Identified with a Disability

1. Good Grief:Understanding Your Feelings When Your Child Is Identified with a Disability Lianne Lennert, PsyD Connections Psychological Services

2. Presenter Dr. Lianne Lennert, PsyD Licensed Psychologist Connections Psychological Services 2250 NW Flanders Suite 103 Portland, OR 97229 503.539.4654 Drlennert@connectionsps.com www.connectionsps.com Multnomah Early Childhood Program 14030 NE Sacramento Portland, OR 97230 503.262.4127

3. Introduction • Although parents and programs alike can be uncomfortable with the grief process, trying to avoid grief limits access to energy for healing and transformation.

4. What this talk will cover • What grief is • What grief doesn’t mean • Common feelings and reactions • Suggestions for support and healing • Transformations of grief

5. What Grief Is • Grief is a collection of emotional and physiological responses to a perceived loss

6. If I feel sad, it means that I don’t or can’t love my child as s/he is I’m weak or broken if I “can’t handle it” If I experience the grief, then my worst fears will come true I’ll never stop grieving I don’t have time or energy for that I grieve because I love my child, and letting myself grieve leaves me free to love Grief is a normal part of human experience Feelings connect me with reality so that I can cope realistically No feeling lasts forever It takes even more energy to hold off grief than to grieve What Grief Doesn’t MeanCommon myths or beliefs that lead people to avoid grieving

7. Myths: Dreams and Fears • Getting “news that kills a dream” • Every parent has at least three children: • The dream child • The feared child • The real child

8. Myths: Dreams and Fears • Parents who find out suddenly that their dream child isn’t real often assume that this means the feared child is the one they must learn to love. But no dream or fear is an accurate image. Parents who disconnect out of fear risk never knowing the real child, a child with strengths as well as challenges, who is eager to know and be known, to connect and grow. Grieving the dream and releasing the fears leaves parents free to recognize and love the real child as well as to face the challenges.

9. Grief: Feelings and Reactions • “Stages” of Grief: • Shock and denial • Anger and bargaining • Sadness • Acceptance and transformation • Don’t necessarily occur in this order • Revisited at transitions and milestones

10. Feelings: Energetic Restless Dazed Numb Disconnected Overwhelmed May not feel anything Reactions: “My child is fine”—lack of follow through on appointments, phone calls, etc. Unreflective compliance with program recommendations “Going through the motions” at home Shock and Denial

11. Shock and Denial • Shock and denial help a person to cope with immediate crisis by postponing feelings and reactions • At the shock stage, a parent may decide things that in retrospect aren’t the best choices • A parent who gets stuck at this stage may not get help for a child who needs it • The shock/denial stage takes a huge toll physically, and if prolonged, may leave a person depressed or sick

12. Shock and Denial: How to Support Yourself • Expect it and recognize the symptoms • Take or make time—programs have legal timelines, but parents have final say • Postpone or plan to revisit decisions made at the shock stage • Maintain routines in other areas • Get exercise, eat healthy, and get sleep

13. Feelings Anger Desperation Panic Frustration Rage Confusion Determination Sense of injustice Anger at God Reactions Attack programs and program personnel Seek second opinion Blame self or partner Fight with partner or others Avoid spiritual practices Make many demands Grief: Anger & Bargaining

14. Grief: Anger & Bargaining • Anger mobilizes energy for coping and change • It’s easy to get stuck at this stage, because the next stage is painful and frightening for many people • Parents who get stuck here risk burning out their support systems

15. Anger & Bargaining:How to Support Yourself • Recognize the source of the anger • Understand that angry feelings can distort your perspective • Choose your battles • Recognize your allies

16. Feelings Exhaustion Despair Helplessness Sadness Emptiness Guilt Isolation Reactions: Withdraw from activities Seek close connections or time alone Talk and listen Cry Sleep Grief: Sadness and Mourning

17. Grief: Sadness and Mourning • Sadness and mourning conserve energy, encourage connections with self and others, and allow a person to let go of unrealistic hopes and dreams • Time spent talking, journaling, and connecting plants the seeds for the next stage of creating meaning around the loss • Parents who get stuck at this stage may have trouble moving on to active coping strategies

18. Normal Grief Moves through anger, sadness, and action Feelings of guilt Increased awareness of vulnerability and mortality Slowed activity, reduced energy Focus inward Depression Gets stuck at sadness and hopelessness Pervasive feelings of guilt and shame Thoughts of suicide and death Incapacitating exhaustion Withdrawal from most or all relationships Grief and Depression:How to tell the difference

19. Sadness and Mourning:Taking Care of Yourself • Expect to be tired and take time to rest • Choose nurturing activities such as talking to friends, spiritual practices, journaling, massage, walks, and music • Maintain exercise and healthy eating • Let meaning grow out of your experience rather than forcing it or allowing others to dictate it

20. Connections and Resources • Spouse/Partner • Extended Family • Friends, Neighbors • Church/Community Groups • Parent Organizations • Professionals • Books/Internet

21. Acceptance and Transformation • The first three stages prepare the way and provide the resources for the fourth stage • Research shows that choosing a meaningful response and taking action are important to resolving grief

22. Feelings Renewed energy Hope Identification with others Compassion Competence Appreciation Spiritual connection Actions Create solutions to problems Reach out to others Cherish your gifts Share opportunities and resources Facilitate changes Live and love Acceptance and Transformation

23. Lessons From Grief • Grief is a normal process that frees a person to love more deeply and solve problems more creatively • Grief is a cycle with its own rhythm and flow, and may show up again (often to a lesser extent) at transitions or milestones • Making room for grief is a valuable part of coping with the challenges of having a child with a disability