SurvivingtheRollercoaster:TheJoys&SorrowsofFamiliesof

ChildrenwithDisabili?es

PresentedbyVanessaLohf,L.B.S.W.February2010

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  Conceptof“ChronicSorrow”

  Processesfamiliesusetomanagetheirsorrow

  Waysyoucanprovidesupport

  Waysyoucanprepareyourself

PurposesoftheDay

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Imaginethatyouhadababyyesterdayandthatyouhavejustbeentoldthatthechildhasacondi?onwhichmeansshewillnotgrowanddeveloplikeotherchildrenandwillalwaysrequirecareandsupportfromothers.

 Howdoyouthinkyouwouldrespond?  Whatsortsofprocessesdoyouthinkyoumaygothrough?

PersonalReflec?on

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HollandorBeirut?

Many families find themselves to be more cohesive, stronger, and with a newfound sense of purpose in their lives.

Others continue to hurt profoundly.

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ProlongedGriefisalong‐termreac?ontoasingleloss.ChronicSorrowisareac?ontomul?plelossesover?me.

  Apercep?onofsadnessorsorrowover?meinasitua?onwithnopredictableend;

  Sadnessorsorrowthatiscyclicorrecurrent;   Sadnessorsorrowthatistriggeredinternallyorexternallyandbringstomindaperson’slosses,disappointmentsorfears;

  Sadnessorsorrowthatisprogressiveandcanintensify   Con?nuesaslongasthedisparitycreatedbythelossremains

“ChronicSorrow”

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BasicModel:

 Antecedents–Cause

  Triggerevents

  Internal&ExternalManagementMethods

OverviewoftheChronicSorrowModel

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  Involvementinanexperienceofsignificantloss

  Lossmaybeongoingwithnopredictableend–“livingloss”

  Maybeasingleloss   Includesbothactualandsymboliclosses

 Gapbetweentheactualrealityandidealized   Experiencethelossin“bits&pieces”

Antecedents

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 Circumstances,situa?ons,andcondi?onsthatbringthenega?vedisparityresul?ngfromthelossexperienceclearlyintofocusorthatexacerbatetheexperienceofdisparity.

  Differfromacceptednorms–social,developmental,orpersonal

  Inbereavementsitua?ons,thedisparityiscreatednotbythepresenceoftheindividual,buttheirabsence.

TriggerEvents(“Milestones”)

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  Changesinfamilyfunc?ons:rolechanges,finances,maritalsa?sfac?on.Boththeindividualandfamilyiden?tyhastoberedevelopedortransformed.

  Interac?onswithprofessionals

  Severityofthedisability(i.e.Childrenwhoareunabletoeffec?velycommunicatetheirneeds,areincon?nent,orwhohavesleepproblems,dependentforbasicneedsbeyond“tradi?onal”?melines.)

  Pressuretomakelifeordeathdecisionsocenwithlimitedorconfusinginforma?on

StressorsExperiencedbyFamiliesofCWD

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 Whatarethingsthatyoudotorelievestress?

 Howmightfamiliesofchildrenwithdisabili?esfindthe?metodothesethings?

 Whatiftheydon’t?

RelievingStress

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 Waysinwhichindividualfamilymembersmaychangetheirsubjec?vepercep?onsofstressfulsitua?ons.

  Threedimensionsofcogni?veadapta?on   CausalAdribu?ons   Mastery   EnhancingSelf‐Esteem

Cogni?veCopingTheory

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Thesearchforthecauseofanexperienceinordertoestablishorreestablishasenseofcontroland/orasenseoftheorderlinessandpredictabilityoftheenvironment.   Thesearchfor“meaning”orpurpose   Appearto“shopping”foradiagnosis–especiallyifthechildhasaglobaldiagnosislikea“learningdisability”or“CerebralPalsy”

  Canbeposi?veornega?ve   Even“self‐blame”canbeassociatedwithposi?veadjustmentbecauseithelpsestablishcontrolofthesitua?oninthefuture.

CausalAdribu?ons

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Involvesgainingafeelingofcontroloverthethreateningeventsoastomanageitorkeepitfromoccurringagain.

  InternalControl:   Informa?oncontrol   Behaviorcontrol

 Whatmaybesomewaysthatyoucancontributetoparentsachieving“mastery”?

Mastery

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Achievedthroughselec?velyadendingtotheposi?veaspectsorbenefitsofasitua?on,and/orcomparingoneselfposi?velytoothers.   Establishing“cogni?ve”or“retrospec?ve”controlofasitua?on

  Familyfocusesonthebenefitsofasitua?on–findsa“silverlining”

  Comparingoneselffavorablytoothers

EnhancingSelf‐Esteem

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  Someanimositybetweenparentsandprofessionalstheyworkwithisunavoidable

  Interac?onsmaybestressfulbecauseofbiasesheldbytheprofessional,thefamily,orboth

  Thefamilyis,inpart,the“cause”ofthechild’sproblem

  Thechildisofnoworthtothefamily   Thefamilyisresponsibleforeverythingthathappenstothechild

Implica?onsforFamily‐ProfessionalRela?onships

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  Professionalswhounderstandthefunc?on&valueofthesecopingstrategiesmaynotonlybeabletohelpfamiliesenhancetheiruse,butmaygaininsightintothefamily’sbehaviorthatmayenhanceprofessional’sabilitytorespectandcollaboratewiththefamily

  CausalA6ributes‐don’timmediatelyinferthefamilyisunabletoacceptthechild’sdisability

  Mastery–Ifthereisn’tasensethatinterven?onsorac?onsbythefamilyorprofessionalswillbeuseful,thefamilymaynotpar?cipate

  EnhancingSelf‐Esteem‐Helpfamiliesiden?fytheposi?veaspectsofhavingachildwithadisability.Thecatch…YOUhavetobelievewhatyou’retellingthem.

Implica?onsforFamily‐ProfessionalRela?onships(cont.)

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Familiesexperienceperiodsofgreatjoyandsa?sfac?onwiththeirchildreninbetweentheboutswithsorrow–otherwisethegriefwouldbecomedebilita?ng.   Amothersaysthatwhensheisalonewithherson,shefeelssheis“inthepresenceofangels”.(Scornaienchi,2003)

  Parentsarelicedupbytheirchildren’sposi?veajtude,theircourageandresilience.(Kearney&Griffin,2001)

BravingtheRollercoaster:TheJoy‐SorrowConcept

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  Helpthempreparefororworkthroughunexpectedrecurrencesofgrief

  Helpthemiden?fywhattriggersmightoccur   Bemindfulwhengivingdiagnoses–goodnewsandbad   Behonestwiththemaboutwhattheycanexpectwithoutbeingoverlydrama?c

  Behopeful   Beencouraging   Sharesuccessstoriesyou’veheard   Listentotheirstories–theyneedtotellthem   Talkaboutthingsthatotherchildreninthefamilyaredoing(askques?ons)

  Introducethemtootherfamilies,thenRE‐introducethem   Empowerthem   Allowthemtogrieve

Howcanyousupportfamilies?

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  Recognizethatwhatmayappeartobealackofinterestmay,indeed,bealackof?meand/orenergy

  Wherearetheparents?BySueStuyvesant   Beresponsivetotheneedsandinterestsofindividualfamilies

  Iden?fywaystohelprelievesomeofthepressureswithin?me‐stressedfamiliessoastofree?meforpar?cipa?oningroupac?vi?es

  Iden?fymeansofpar?cipa?onthataremeaningfultothefamilynot?meandenergyintensive

Howcanyousupportfamilies?(cont.)

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 Remember,theparentsknowtheirchildbest   Youmaybewelltrained,buttheylivewiththechild!

  Encouragebothparentstobeflexibleandassumekeyroles–avoidgenderspecificdu?es

  Askfamilieswhattheirchildrencandounderdifferentcircumstances

  Don’tbaseachild’sabili?esontheirdiagnosisalone

Howcanyousupportfamilies?(cont.)

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  Assistfamiliesinobtainingadequateinforma?on   Helpthemlocateinforma?onresources   Don’tsugarcoatorleavethingsoutbecauseyouthinkitwillbe“misused”

  Helpeliminatecommunica?onbarriers   Appreciatefamilies’successeswithoutsanc?fyingthem

  WeocenimplythatparentsofCWDare“superhuman”   Copingskillsthatfamiliesemployareavailabletomostfamiliesandsimilartothoseusedtoparentanyotherchild.

Howcanyousupportfamilies?(cont.)

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Siblingsshareboththereal&symboliclossesrightalongwiththeirparents,buttheirajtudes,feelings,andconcernsarealsoshapedbytheiruniquerela?onships&roleswithinthefamily.   Feelingsthattheyareignored,displacedorforgoden–thismaycausethemtoactout

  Parentsmayrelyheavilyonthe“well”childforvalida?onandreassurance–butmayalsopresenttriggers

Don’tforgetthesiblings!

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  Inviteandvaluesiblings’perspec?vesandinput

  Serveasasafehavenorfindsomeonewhocan

 Reassurethemthattheirnega?vefeelingsareokay

 Helpparentsrecognizetheindividualstrengthsoftheirchildren

  Encourageindividual?me

Don’tforgetthesiblings!(cont.)

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  Justknowingtheterminology(i.e.“chronicsorrow”,“compassionfa?gue”)

  Developapartnershipwiththefamily   Knowtheresourcesavailableandbeabletosharethem–andrespectthefamilieschoicewhetherornottoaccessthem

  Focusonfamilystrengths   Sharethefamily’sjoysandsorrows   Developasupportsystemofyourownofsomekind

  Developpersonalritualsandkeeptothem

Howcanyouprepareyourself?

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  Kearney,PenelopeUnit10–ChronicGrief(OrisPeriodicGrief?)GriefinaFamilyContext.Obtainedfromwww.indiana.edu(Seepresenta?onforfurtherreferences)

  Parrish,RosalieChronicSorrow,Joy&StrengthinFamiliesofChildrenwithDisabiliIes.PresentedtoSmartStartNa?onalConference,May2008

  Redding,Susan(1998)Middle‐rangeTheoryofChronicSorrow.JournalofNursingScholarship

  Roos,Susan(2002)ChronicSorrow:SiblingsofChildrenwithDisabili?esHaveNeedsTo(ExpertSpeaksOut).TheBrownUniversityChildandAdolescentBehaviorLe6er

  Summers,J.,Behr,S.,&Turnbull,A(Dateunknown)Chapter2:Posi?veAdap?onandCopingStrengthsofFamiliesWhoHaveChildrenwithDisabili?es.Obtainedfromwww.beachcenter.org

  Tingey,Carol(1989)Implemen?ngearlyinterven?on(excerpt).TheExcepIonalParent.

References

Thankyou!!!!