Will I Ever Be Okay with This? Will I Ever Stop Crying?

Will I Ever Be Okay with This? Will I Ever Stop Crying?Autism and the Grief CycleCrystal EmeryKaren Fairchild

UVU Autism Conference April 12, 20131What Is Grief?The total response of the organism to the process of change Change = Loss = Grief

A change of circumstance Produces a loss of some kind Which produces a grief reaction

2This definition has changed and evolved over the years. In 1974 grief was defined as the normal response to the loss of a loved one by death. Responses to other kinds of losses were labeled pathological depressive reactions.The process of grief is long-lasting and doesnt follow a fixed patternGrief must be worked through to be able to adjust to and move on with life after lossIt is a wound as real to the person as a broken leg and must heal in much the same way with time and support. When we refer to the pain of grief, that pain is very real.Many physical ailments can be traced back to grief. The body can react to such emotional and psychological trauma.BOOKTear SoupBy Pat Schwiebert

When Do We Experience Grief?DeathDivorceUnmet expectations Loss of a job Move to another cityLoss of control perceived loss of controlHaving a child with special needs4Major life milestones (like a certain birthday or age, starting school, etc.) can also trigger a grief reaction for parents of a child with special needsAny time we have a change of circumstances that we perceive as negative we can go through this process. We go through varying degrees of this process all the time.

There is a positive change cycle as well.Although these losses dont involve death, [people] undergo the same sense of change, disruption, and mourning.

--Maria Trozzi Talking With Children About Grief, 1999 Non-overt Losses5Maria Trozzi researched the psychological issues of families living with youngsters who have a disability as one area of her research on grief and loss.

She calls children in such families the forgotten mourners. We often dont realize that families experience this grief together not just the parents.How Does This Apply To Parents of Children with Autism?Most parents will go through some form of this process.Mourning their lost expectations for their child.Sometimes the process occurs again and again with each missed milestone.

We need to understand the process so we can recognize the signs and plan ways to go through it well. 6It is important to normalize these feelings for parents to help them feel less isolated by their feelings of grief.

You may know that a parent is behaving a certain way because of their grief what the behavior means or is trying to accomplish but talking about it is not helpful until the person vocalizes it herself. They have to be ready or the conversation may drive a wedge in your relationship.Who experiences grief when a child is diagnosed with Autism?ParentsSiblingsGrandparentsAunts and UnclesIndividual with AutismTriggers that can set off GriefMilestonesPromReligious AdvancementsYounger siblings surpassComparisonsComments/AdviceUnmet expectations (even modified expectations)

When a child is born with or develops some problems, parents mourn the loss of a healthy son or daughter. Grieving is one of the first experiences people have when they become parents of children with special needs. It can be scary. If people are unaware of the different feelings and stages of grieving, they can become frightened by their sudden, unexpected, strong emotions. --Judith Loseff Lavin Special Kids Need Special Parents: A Resource for Parents of Children With Special Needs, 2001

The myth is that it is a cycle and that it ends.Myths About The Grief CycleIt is a cycleA person must go through all stages to resolve their griefA person who isnt progressing through the stages in sequence and in a timely manner needs professional helpYou can recover from grief111. The word cycle implies that you come back to the beginning. This is impossible with grief as the persons world will never be the same as it was before the loss.4. Recovery implies that you get over your grief. The pain may lessen over time and you may learn to adapt to the loss in a positive way, but it will always be with you.The Stages Of GriefShock: Initial paralysis at hearing the bad news

Denial: Trying to avoid the inevitable

Anger: Frustrated outpouring of bottled-up emotion

Bargaining: Seeking in vain for a way out

12Notice how the stages or phases fluctuate between active and passive until they reach acceptance which is the active phase of moving on with life after loss.The Stages Of GriefDepression / Grieving: Final realization of the inevitable usually the longest stage

Testing: Seeking realistic solutions

Acceptance: Finally finding the way forwardThis is where the work of grief begins13Depression stage manifests in many of the same ways as clinical depression: extreme sadness, crying, flat affect, lack of enjoyment in life activities, lack of appetite, etc.The five stagesare a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed orderThey were never meant to help tuck messy emotions into neat packages. They are responses to grief that many people have, but there is no typical response to loss as there is no typical loss. Our grief is as individual as our lives. --David Kessler

14Elisabeth Kubler-Ross said that although many people may not experience all of the stages, most people will experience at least two of the stages of grief when experiencing a loss.We can skip a stage altogether or go through two or three simultaneously. It is a very individualized experience.We can go through them in different time phases, too. The dead battery may take 5-10 minutes while the death of a loved one may take years.Grief Is WorkGrief work is the process of overcoming grief and adapting to life after loss.

The goal of grief work is not to find ways to avoid or bypass emotional turmoil, but rather to work through the tasks and emotions of each stage of grief.

15People who specialize in grief work break the different phases of the grief process into tasks. The completion of the tasks using that term broadly is how a person does the work of grieving and is then able to move forward.

The next three slides denote the three major phases of grief work and the tasks that are associated with each as described by Phil Rich, Ed.D., MSWGrief Is WorkThe purpose of grief work is not to get over loss, but to adjust to its consequences, and restore balance.

The work of grieving begins where the grief cycle leaves off acceptance.

16The grief cycle is the acute response to loss. Grief work is where the deep healing takes place.

It is much like breaking your arm: you have the short-term, acute pain and treatment of casting to stabilize the break and relieve the pain. Then you have the long-term care and support over the next six weeks that allows the break to heal. The grief cycle describes the acute reaction to the event and grief work is the long-term healing.

This is not a passive process.Three Stages of Grief Work Acclimation and Adjustment

Emotional Immersion and Reconstruction

Reclamation and Reconciliation17Handout: Three Stage of Grief WorkCommon Reactions to Grief Thoughts and Physical SensationsThought PatternsDisbeliefConfusionPreoccupationPhysical SensationsFatigueNauseaTightness in the forehead, throat, chestHypersensitivity

Common Reactions to GriefEmotionsThe Feeling Checklistshockedanxiousunhappyfumingremorsefuljoy

Married with Special-Needs ChildrenLaura E. Marshak and Fran Pollock Prezant19Common Reactions to Grief BehaviorsBehaviorsSleep DisturbancesAppetite DisturbancesAbsent-Minded BehaviorSocial WithdrawalCryingRestless Over-Activity

Take Care of YourselfUnderstand that setbacks are normal. The only cure for grief is time.Take care of yourself:Through self-expressionThrough physical self-careThrough emotional self-careThrough good social supportDetermine who really is part of your support system, moving beyond who you think SHOULD be part of your support system.

Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.21Parents of a child with special needs may go through this process with every newly missed milestone. It is normal to grieve over and over again when the loss is not as permanent as death like in the case of divorce or having a child with life-long disabilities.

Healing happens from the inside out, not the other way around. You cannot speed it up or affect its course from the outside. You can only be supportive as the wound heals.

Grieving is hard work and it requires a lot of energy. Encouraging parents to take care of themselves is important to keep the energy reserves filled for this important work.

22DEMANDS over timePROCESSover timeOUTCOMEFamily Crisis Situation

Family TypesAndNewly Instituted Patterns of Functioning

Family Schema Appraisal Family Meaning Family ResourcesProblem Solving and CopingMaladaptationBonadaptationFamily AdaptationPile-up: Stressors Strains TransitionsSocial SupportSituational AppraisalFamilys Capability (McCubbin & Patterson, 1983)MCCUBBIN, H. I. & PATTERSON, J.M. (1983a) The Family Stress Process: The Double ABCX Model of Adjustment and Adaptation, in H. I . MCCUBBIN, M. B. SUSSMAN & J.M. PATTERSON (eds) Social Stress and the Family: Advances andDevelopments in Family Stress Theory and Research, pp. 737. New York: Haworth.22Differences between Parents in Emotional ResponseIt is crucial to accept that your partner will deal with his or her emotions very differently from you.First, accept differences in coping style without drawing conclusions about what it means.Second, aim (high) to embrace the emotional difference. If you are unable, aim for nonjudgmental tolerance.

Married with Special-Needs ChildrenLaura E. Marshak and Fran Pollock Prezant

23Tips for ParentsLearn to be the best advocate you can.Dont push away your feelings.Try to have some semblance of an adult life.Appreciate the small victories that your child may achieve.Get involved with the Autism Community.

From autismspeaks.orgResearch on Siblings of Children with AutismChallengesForming healthy bond with child with autismVulnerable to behavior problems, speech and language disabilities, anxiety, depression, and other mood disordersHigher risk for ASDMore difficulties than siblings of children with Down syndrome and non-disabled

StrengthsPride in teaching their siblingHigher self-esteem, empathy, maturityTake lead role in relationshipLess quarreling and competition than families without disabilityPositive adjustment, particularly for sisters

Fisman et al., (1996); Kaminsky & Dewey (2001); Mandleco et al., (2003); Royers & Myche (1995), 25Sandra Harris, p. 14-20(Roeyers & Myche, 1995) behaviors(Kaminsky & Dewey, 2001) competition(See research of Mandleco, Olsen-Roper, Dyches, & Marshall)

Some studies show that siblings of children with autism face a particularly daunting task in forming a healthy sibling bond, especially given the lack of social interest likely from many children with ASDs. The adjustment of these siblings varies greatly, with a number of them faring significantly worse than siblings of children with other disabilities. This feeds nagging concerns that typically developing siblings in families with autism may be more vulnerable to behavioral problems, speech and language disabilities, anxiety, and depression and other mood disorders. The genetic component of autism also must be considered, as some studies show that the siblings of children with ASDs are at a higher risk for ASDs and related impairments. 1,2Orsmond, G. I., & Seltzer, M. M. (2007). Siblings of individuals with autism spectrum disorders across the life course. Mental retardation and developmental disabilities research reviews, 13(4), 313-320. View Abstract Shastry, B. S. (2003). Molecular genetics of autism spectrum disorders. Journal of human genetics, 48(10), 495-501. View Abstract

A study spanning three years in the mid-1990s compared the adjustment of siblings of children with PDD, Down syndrome, or no disabilities. The findings were bleak: "Significantly more difficulties were found in the siblings of children with PDD compared with the other two groups." So there it was: siblings of children with PDD struggled more than other siblings, even more than those of children with another disability, Down syndrome. Not only that, but factors that eased stress in the other two sibling groups, such as marital satisfaction and lack of parental depression, had no noticeable protective effects on the group of siblings of children with PDD. 4 However, one study did find that large family size appears to contribute to the healthy adjustment of siblings of children with autism. 5

Fisman, S., Wolf, L., Ellison, D., Gillis, B., Freeman, T., & Szatmari, P. (1996). Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. Journal of the American Academy of Child and Adolescent Psychiatry, 35(11), 1532-1541. View Abstract Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of child psychology and psychiatry, and allied disciplines, 43(2), 225-232. View Abstract

But there is reason for hope. A growing body of research shows that some typically developing siblings outright benefit from their relationships with children with autism. These siblings speak of a certain pride in "teaching" their siblings, and may have higher scores on self-esteem, empathy, and maturity measurements. One study demonstrated that the child with autism was more social with a typically developing sibling than with parents trying to bridge the gap between generations, suggesting that the natural interactions in these sibling relationships potentially benefit both children. Other studies show that siblings of children with autism are likely to take the lead role in the relationship, even when they are the younger in a pair of siblings. They seem to actually tailor their behaviors to maximize the interaction for both themselves and their sisters and brothers.

Siblings of children with autism, Down syndrome, or no disabilities participating in a 2001 Canadian study described less quarreling and competition in the families with a child with a disability, whether autism or Down syndrome, than in families without children with disabilities. 6 A report by the same researchers the following year found that siblings of children with autism were not at increased risk for maladjustment. The researchers noted that more than three-quarters of the families in the study attended support groups, and suggested that siblings' increased access to information and social support may contribute to their positive adjustment. However, the researchers made a distinction between brothers and sisters: "sisters of children with autism had the highest average social competence scores, whereas brothers of children with autism had the lowest social competence scores." 7

Kaminsky, L., & Dewey, D. (2001). Siblings relationships of children with autism. Journal of Autism and Developmental Disorders, 31(4), 399-410. View Abstract Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of child psychology and psychiatry, and allied disciplines, 43(2), 225-232. View Abstract

Other ConcernsOver-identificationEmbarrassmentGuiltIsolation, Loneliness, and LossResentmentPressure to Achieve(Meyer & Vadasy, 2007)

26The risk that the younger sibling of an autistic child will also develop autism or a related disorder is estimated to be around 2 percent to 8 percent, compared to the latest CDC estimate that 1 in 150 children may have autism or a related disorder.Recommendations for SiblingsProvide InformationHold regular family meetings to teach, discuss, and plan.Explain autism to siblings.Developmentally appropriate explanations about autism and implicationsExplain concepts of equal and fair.Fair isnt treating everyone the same; its treating each person the way that they need to be treated.Teach siblings to play with each other.

2727HarrisRole (McHale, Sloan, & Simeonsson, 1986)

MeyerDetermine Family Roles and Responsibilities

Help siblings accept the childs role in the family.Provide the right to not be in the role of the parent. Demonstrate parental love and attention to all children. Provide appropriate share of family resources. Provide the right, particularly in adolescence, of access to time unencumbered by obligation to the sibling with autism.Provide the right to plan for and live a life on ones own, including the right to choose whether or not they will take care of the sibling in old age.

2828Provide Emotional SupportSet realistic expectations for siblings.Spend individual time with each child in the family.Model appropriate expressions of thoughts, concerns, and feelings.Create an open environment where siblings share thoughts, concerns, and wide range of emotions. Provide the right to be free of guilt regarding sibling with autism.

Provide Emotional Support (Cont)Help siblings know they have a right to their own life.Avoid parental favoritism.Provide siblings with private space/time.Demonstrate positive interactions with child with autism.

Assure Social SupportAssure that not everything needs to be done as a family.Encourage activities unique to them. Allow them to enjoy special outings with othersextended family, friends.Solicit help from family, friends, support groups.Provide opportunities to meet other siblings.

Most siblings do very well!More compassionateSelf-control (Dr. Tina Dyches, BYU)Cooperative (Dyches)Sometimes choose helping professions

Tips for SiblingsRemember that you are not alone!Be proud of your brother or sister.Accept your anger but dont live in it.Spend time with mom and dad alone.Find an activity you can do with your brother or sister.

From autismspeaks.orgTips for Grandparents and Extended FamilyAsk how you can be helpful.Seek out your own support.Be open and honest about the disorder. (Liberating!)Put judgment aside.Learn more about Autism.Carve out special time for each child.

From autismspeaks.org Group DiscussionWelcome to Holland by Emily Perl Kingsleyor Welcome to Beirut by Susan Rzucidlo ???

Read the poem Welcome to Holland and discuss Holland and Beirut.Have a reflective listening activity. 2 minutes in pairs for each person to discuss the answer to this question without question or interruption.Come back together as a group to discuss what they learned from listening to each other.Discuss peoples real experiences and real coping strategies as a big group, let them give each other suggestions and support.34Contact InfoKaren Fairchild, LCSW801-221-9930, ex. 160kfairchild@kotm.org

Crystal Emery, EI2801-376-6012crystale@esgw.org