Raising Children in Families Affected by Loss

1. Raising Children in Families Affected by Loss Joann O’Leary, PhD CEED, University of MN MNAEYC/MNSACA February 10, 2012

2. Children and Grief A child can live through anything, so long as he or she is told the truth and is allowed to share with loved ones the natural feelings people have when they are suffering. Eda LeShan • This presentation focuses on pregnancy and infant loss but children’s grief responses transfer to other losses

3. Children Suffer Many Kinds of Losses • Adoption • Divorce • Deployment • Moving to a new home • Changing Day Care • Foster placement • Death of parent or sibling

4. Foster/Adopted Children • Suffer from multiple losses that are ongoing. i.e. – loss of birth family, loss of home/environment, loss of support, loss of security, etc. • Faced with unique loss experiences and attachment issues that can represent significant developmental and/or emotional/behavioral issues that can impact the process of creating healthy attachments and bonding resulting in at risk/complicated, chronic, disenfranchised, delayed or unresolved grief • Suffering multiple losses, both physical and symbolic can result in bereavement overload, described as a shut down or “auto pilot.”

5. In 1916 Sophia Fahs, a Unitarian educator, editor, author and minister, with a special interest in the religious education of children, wrote an article for Parent Magazine titled, “What are our children’s thoughts about death?” She describes a scene in her home after her baby daughter Gertrude had died. Her other three children were all under four years of age.

6. “Before the funeral, a special service was held for the three other children in the family and for those of their child friends who cared to come. In a bassinet draped with white dotted Swiss over which were twined sweet peas, the baby’s body lay. Simply and kindly the pastor talked and prayed with the little group of hushed children, and together they sang a child’s song.”

7. Why Include Children Before the baby had come into the world, the sisters and brother had shared the joyous knowledge of her expected birth, and after she went, they shared also with their parents the trust that all was well with the child”(Hunter, pp 91-92).

8. Statistics Around Perinatal Loss • 25 % of all pregnancies end in loss in the form of miscarriage, stillbirth or neonatal death • African American women experience loss 2x more frequently than European Am Women • Miscarriage occurs in 1 of 5 pregnancies • MN has one of the lowest infant mortality rates in the nation yet in the Am Indian population babies die at a rate of two to three times higher than the white population (America Indian Infant Mortality Review Project 2005-2007)

9. Statistics Regarding Sibling Death Just under 2 million children age 18 and under living in the United States have experienced the death of a sibling. 26, 000 stillbirths in U.S. in a year 19,000 Newborn deaths Close to half of these families have other children.

10. Secondary Losses • The parent they knew before the loss • Sibling relationship • Loss of security • Sense of guilt • Will I die too? • Loss of attention • Loss of normality • Parental communication: If the parent can tolerate the pain the child will learn to as well

11. Death is Hard to Talk About • Death isn’t nice • Death makes us uncomfortable • Emotional pain of a grieving person can be frightening • Death forces us to look at our own mortality • We cannot fix death • Often looks like depression • There are no easy answers • We don’t know what to say or do

12. The Families Perception of Loss is influenced by: • Traditions around loss and death, personal beliefs, extent and nature of family support, especially pregnancy loss • Even families that share a common cultural/tribal heritage may have different customs as the result of their own experiences and levels of assimilation • Cultural expressions vary according to education, socio-economic factors, ethnic affiliations and acculturation process

13. Parental Concernsin Telling the Children • Children are too young to understand • In the depth of their own pain they don’t want their children to feel the same • They don’t know how • But…parents need to share why they are sad and be okay crying with them and in front of them

14. Long illness or quick, unexpected death A long illness may mean the child is more prepared for the death, but also means that attention has been devoted to sick sibling for a period of time An unexpected death can be especially frightening, leaves child feeling vulnerable, family in deep state of shock, disbelief

15. At the Time of Loss Assess: Degree to which a child was involved or excluded. A child who has been involved in the process of the sibling’s illness and/or dying will have a better opportunity to grieve, express feelings, gain information A child who is excluded from the process feels left out, does not understand what is happening, may feel less important in family

16. Why Children Need to Know • I remember lots of the miscarriages as a toddler/preschooler and my Mom often feeling sad and alone. I was frightened and often overwhelmed.I still need to hear that what happened was not my fault and I couldn't fix it or make my Mom feel better.

17. Children Need • Children understand grief within developmental stages • Grief is not linear • Grief is unique • Grief work helps us to achieve reconciliation and healing with loss • There is no right or wrong way to grieve

18. What Helps • Open, honest communication • Reassurance that: • family is a safe place to share feelings • their parents will be there for them • Someone to • Listen to their fears, fantasies, and questions • Validate their individual thoughts and feelings • Safe ways to express their inner feelings • Play • Art • Books

19. Explore • What parents have shared thus far with the child • Is there stress between parents concerning the loss or conflict with extended family • What are their feelings about crying in front of the child • Present them with options, not directives • Support what would be meaningful to them and then help them to make those experiences happen

20. “It was the best of times, it was the worst of times...”Charles Dickens • Twin births rose 70% between 1980 and 2004 • Triplet or higher order multiple (HOM) births increased more than 400% during the 1980s and 1990s (Martin et al. 2009) • 4x the perinatal mortality • 3x the neonatal morality • C-birth in over 80% • Twins are five times and triplets are 15 times more likely to die within 1 month after birth. (Little, 2010)

21. Prenatal Grief • Respect that unborn children carry cellular memory • Implications for survivors of multifetal pregnancy • Children who are adopted • Unwanted pregnancy

22. Infant • Bowlby contended infants as young as 6 months experience mourning in the same ways as adults • Aware of presence, sudden change in physical and emotional climate • If the mother is grieving, the infant senses this and respond with changes in behavior • May have night terrors, colic, or general distress; Need the words for feelings • Separation anxiety can last a long time

23. Verbalize Emotions • Adoption or Foster Placement: loss, fear, abandonment, anger & pain • Allow child to grieve and not “shush” his cries • Acknowledge the pain “It must be so hard for you to leave your mother.” • Ask the birth mother what kind of soap she uses so they can retain some of those same comforting smells.

24. Toddlers/Preschool • Learning the world is safe • Can't conceptualize death but express sadness even when a pet dies • Grieve in spurts, throw temper tantrums, rock for comfort, revert to earlier behaviors • May have a strong desire to control

25. Case: Day Care • 2 ½ yr. old with emotional melt-downs, aggression, defiant behavior • No death in family or divorce but in a period of two months the: • Family had moved to a new home • Girl no longer shared a bedroom with 5 yr. old sister • Sister “graduated to Kindergarten” so no longer with her • Girl had transitioned out of toddler room • Losses: • Her home • Her old neighborhood and friends • Cozy, shared bedroom • Big sister at her day care • Old classroom environment, teachers and friends

26. Case: Death of a Parent • Four year old in car accident where mother died • Remembers waking up in the dark, red light flickering and hearing sirens • Told no information other than her mother went to heaven • For months afterwards she screamed every time she heard a siren

27. Case: Pregnancy Loss • 5 year old (1959) • Saw mother hemorrhage on the floor • Ran for help • Other than father, no one saw the baby • No explanation to the children • I think what he did was to just detach. If I don’t love you I don’t have to be hurt • As a adult: Writes science fiction, many about survivor guilt : A boy on a mountain hiking trip and he comes home and his younger brother doesn’t. It’s always a younger brother who doesn’t survive.

28. Case: Death of Younger Brother • For years I always thought it was my fault because he had a small form of epilepsy. I still remember the day my dad was running down the hall screaming. My parents would not let me hold him, or see him so the last time I saw him was when the paramedics were working on him. • I never talked to anybody about it. My parents never wanted to talk about it. They were the type, “Let’s just not talk about it.”

29. Sibling loss changes order in the family • “It should have been me” • Acting out, destructive behaviors OR • May isolate themselves, become asocial and emotionally insulated

30. Other Signs of Grief • Physical pain, such as a headache or stomach ache • Sleeping problems or bad dreams • Eating problems (not eating or eating too much) • Fear of being left alone • Being very clingy (wanting to be near certain people) or disengage • Regression eg wetting bed, cognitive skills

31. Helping Preschoolers • Discuss death in simple & direct terms • The body stopped working • It has a specific cause • Pregnancy loss “The baby was too small to live outside of mommy” • It is irreversible • Reassurance they are still safe • Keep activities as routine as possible

32. To Help Children Help the Parents • Deal with their own grief. If they’re okay the kids will be okay • Encourage parents not to hide their tears or pain from their children • Be truthful, honest and consistent • Remind the parents to tell their children that the death was not their fault (magical thinking) • We thought it was our fault that Freddie died. • It’s not the child’s job to take care of the parent

33. Giving voice to an experience liberates it from disenfranchisement (Quote from Embracing Laura) Children given the words for what happened fair better as it is not a secret in the family They saw mommy’s tummy getting big and needed to know the baby didn’t just go away Preventing Disenfranchised Grief

34. You Can Help By: • Encourage kids to show their feelings by letting them write a letter, a story, a poem, or drawing • Keeping parents informed of children’s activities • Encourage parents to be lavish with their affection, plenty of hugs • Allow children to be involved in the funeral and other family rituals • Reassure the parents that the kids will be okay

35. When Parents Have Difficulty • You may be the first to observe children acting out the story in play or art work • Discuss the child’s behavior and guide supportive intervention “Have you noticed any changes in your child’s behavior?” • If an early pregnancy loss sometimes pictures of fetal development can be useful • Help build memories • For the long term sibling relationship • To continue the bond with the deceased

36. Support the Twin RelationshipRespect the Loss for the Surviving Baby • Begins before birth with each baby’s innate sense of physical proximity to the other • Respecting the experience of loss for the surviving babies is important • Most surviving children are thankful to have the pictures

37. Other Cultures • The belief of some African tribes is that the spirit of the dead twin must be preserved in order to ensure the wholeness of the survivor(Elniski, 1994). • Yoruba twins from Nigeria carry a wooden image representing their dead twin around their neck or waist, which is said to give at once company to the survivor and refuge for the spirit of his or her dead twin.

38. Involving Siblings • Support the children’s story about their deceased sibling • Grief can be more intense as parents realize what they have missed in not having all the babies.

39. Pregnancy After Loss: What we know already Overprotective parenting style and poor parent/child affectional bonds can impact on children’s later mental health (Armstrong & Hutti 1998, Parker 1983, Shoebridge & Gowers 2000) Bereaved parents in their subsequent pregnancy after the death of a baby often delay emotional attachment to their new baby for fear of another loss, (Cote-Arsenault & Marshall 2000, Robertson & Kavanaugh 1998; O’Leary & Thorwick, 2006) Subsequent child called ‘replacement’ ‘vulnerable child,’ under influence of ‘Ghost’ or 'penumbra baby' , may be subject to increased risk of psychopathology including attachment disorders (Ainsfield & Richards 2000, Kempson, Conley & Murdock 2008, Powell 1995, Reid 2007, Sabbini 1988,) When raising subsequent children, bereaved parents can be overprotective (Lamb 2002, Pantke & Slade 2006; Warland, et.al.2010; O’Leary & Warland, 2011)

40. Involving the Children in the New Pregnancy • Children can have the same fears as the parents: “Is this baby going to die too?” • Loss of innocence: “When the second baby died we didn’t believe that a baby’s actually going to live when they were born” • May worry about the health of the mother. • Need reassurance that the doctors are taking good care of the baby and their mother

41. Children born after Loss • Empathetic • Strong connection and need to have a continued relationship with deceased sibling • Understand the concept of death “Loss of magical thinking” • Child: They’re very comfortable with death. They don’t go into the fear based stuff around death, more into what happens spiritually to people when they die (3 & 5 yr. old subsequent girls) • Adult:I grew up knowing that all of this is transient and in a moment could be gone

42. Protective Parenting • Understand they will be more protective parents: I check on the kids in the middle of the night and always have…put my hand on their chest or my finger under their nose to feel that they are breathing • Acknowledge you understand their fear and provide reassurance: “She’d tell me how her day was. She actually wrote something up every day about what her day was like.”

43. Parent Suggestions • You can’t focus on the negative, worrying about what could be but focus on what is good today • I keep myself in check by watching friends who I think are doing a good job raising their kids and haven’t had the same experience • I practice teaching them to do things alone in case I’m not there to help

44. What Families Need From Teachers and Care Providers • Put away all pre-stigmatized thoughts on the subject and know that in the minds of these families and the hearts of these families there’s a substantial and significant loss that is always part of them that they carried. • Parents don’t always know what the best way is to teach our kids about that loss and move forward. We might not do every thing right and unless they have support like I had from other parents in the same situation it feels like it’s a secret that we have to carry and one that stays quiet. • Parents really need to know that people aren’t going to sit in judgment of how they’re parenting their kids.

45. When caring for families accept that you: Don’t know everything Don’t know all the answers Don’t need to know what to say Won’t help everyone Aren’t perfect Can be open Can say no Have both strengths and weaknesses Believe the family will survive and YOU WILL make a difference

46. NUTURE YOURSELF SO YOU CAN SUPPORT & NUTURE THE FAMILY • Care providers must grieve too. If your own grief issues are unresolved it may cause difficulties. • There is evidence showing that people working under major stresses without relief are at risk of physical as well as emotional illness. • Rely on peers to avoid taking on the families pain

47. Resources • www.plida.orgfor updated bibliography on grief issues with children and parents • http://cehd.umn.edu/ceed/profdev/onlinecourses/htm

48. Adoption/Foster Care • Axness, M. (1998). Painful lessons, loving bonds: The heart of open adoption. • http://DrMarcy@QuantumParenting.com • Axness, M. (1998). What is written on the heart: Primal Issues in adoption. • Ganz, S. Video: Unlocking the heart of adoption. • Mann, J. & Kretchmar, M. (2006). A disorganized toddler in foster care: Healing and change from an attachment theory perspective. Zero to Three, 26(5), 29-36. • Resources by Michael Trout at the Infant-Parent Institute • MTrout@infant-parent.com • The Hope-Filled parent: Meditations for foster and adoptive parents of children who have been harmed • Breaking Peaces: Babies have their say about domestic violence • Gentle transitions: A newborn baby’s point of view about adoption • Multiple transitions: A young child’s point of view on foster care and adoption • Is anyone in there? Adopting a wounded child