Finding Support - as you care for your child with a serious medical condition

FindingSupport

as you care for your child with a serious medical condition

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It’seasytofeelisolatedandaloneasyounavigateyourchild’sdiagnosis. Evenyourbest-intentionedfamilymembersandfriendsmaynotknow whatyouneed–inwordsanddeeds.Andyoumayfeelit’seasiertostay hunkereddowntoyourselfandinyourhome.

Butisolationisnottypicallyhelpful.Theneedtobeconnectedisapartof humannature.Findingthesupportthatworksbestforyouasyoucare foryourchildandfamilyisimportant.

Withinthesepages,youwillfindinformationonwheretofindsupport*to helpyoumaintainandevenbuildnewconnectionsandsupportsystems.

*Support from people in your family, network and community. This guide does not address finding financial, practical or medical support.

TheRingTheoryofSupportisahelpfulframeworkforunderstandingwhere toseeksupportandwhethertoconsideryourself astheprimarycaregiverof yourchild asasourceofsupportforothers.

TheRingTheorywasdevelopedbyclinicalpsychologistSusanSilk.As illustratedonthenextpage,youandyourchild(andyourparenting partnerifthereisone)areatthecenterofthecircle.Yourclosesttrusted familyandfriendsareinthenextcircleout.Moreremovedfriendsand familyareinthenextcircleoutfromthere.

Youinthecenterring,andinnerrings,canconfideinandaskforsupportof thoseinouterrings,andthoseinouterringsshouldofferonlycomfortand supporttothoseintheinnerrings.Inotherwords,itisnotyourjobto consoleyourmotherorfriendiftheyaredistressedaboutyourchild’sillness. Inshort,itisCOMFORTIN,DUMPOUT.

TheoryofSupport

Source: Illustration by Wes Bausmith

FindingSupportWithin

Achild’sseriousillnessimpactsaparentingpartnershipinmanyways, promptingtheparentstodiscovernewmeansofcopingandcommunicating.

Parentingachildwithaseriousmedicalconditioncanbeall-consuming.It canalsobeanopportunitytogrowtogether.Itisimportanttorecognize evenanticipate howthisresponsibilitywillchallengeyouandyour relationship.Stayingcommittedtoandnurturingthepartnership,asmuchas youareable,mayhelpyoufindevengreaterstrengthandcouragetogo forward.

Youandyourpartnercanbettersupporteachotherwhenyouopenly acknowledgewhatyoueacharecontributing,andwhenyouacknowledge thatyouareinthistogether.Also,bycreatingwrittencareinstructionsheets andcheckliststhatyoubothcanrefertowillprovideagreatersensethatyou areworkingtogethertowardsclearandcommongoalsforyourfamily.

“Tosuckitupandsay,yeah.Ineedhelp; somebodyneedstoliftmeup.We’vehad todothat Wegoseesomeonewhohas beentremendousandhasbeenagreat help.Wetalkaboutsomanyissuesand believeitornotitevenhelpsinthecare ofyourspecialneedschild.”

–LJ,dadofRachel

YourPartnership

“We’reapproachingourrelationshipasfriends thatarebestfriendsthatsupporteachother.He ismybestfriend.HeisthepersonthatItruston everything…itisalotanditisalotofstress. Marriagewithachildthat’scomplex,special needs,andnowontopofitterminalisawhole bagofcrazy.AndwearestilltogetherbecauseI thinkwelearnedtobefriendsandrespecteach otherandrecognizethatthisiswhatwearedoing itfor.Weareinittogether.”

–Jeanette,momofFrankieJr.

Unit:Marriage/ParentingPartnership Guide:StrengtheningYourParentingPartnership Watch:TheMarriage/Partnership IntheRoom:DyadicCoping

FindingSupportfrom

Extendedfamilymembers,includinggrandparents,oftenfindthatthe seriousillnessofabelovedchildbringsouttheirmostwell-intentioned impulses:tolove,tosupport,tofindwaystoexpresssolidaritywiththe family.

Ifyouareluckyenoughtohavegrandparentsandextendedfamilywholive nearbyandwhowanttohelpout,leanonthatsupportasmuchoraslittleas yourfamilyneeds.

Whenyousetexpectationsonwhatisandisnothelpful,youarehelping guideyourextendedfamilyandgrandparentsinwhattheycandotohelp you.

“Havi’sposseoriginatedcompletely spontaneously.AfterHavi’sdiagnosis everyonewasjusthere…weneverhad toaskforanything.They justshowedup.”

–MatthewGoldstein,dadofHavi

ExtendedFamilyandGrandparents

“Ihadamentalcalendarinmymind,soI wasn’ttherephysicallybutIwasaware.In doingthatIwouldcheckin….”

–Robin,grandmotherofTalia

“Wespokedaily.Thebiggestsupportthatshe wastomewastrackingmefromafar Always beingavailable.She(Robin)was responsivetome.”

–Carla,momofTalia

CPNResources

Unit:Grandparents/ExtendedFamily/Friends

Guide:ForGrandparentsandExtendedFamilyofChildrenwith SeriousIllness

Watch:GrandparentsandExtendedFamily

Listen:BeccaandChristine-agrandmotherandmotherreflect onlittleEmma

Havingsupportfromfriendscanhelptolessentheisolationyoucanfeel whilecaringforyourchild.Ifyoualreadyhaveacircleoffriends,theymost likelydowanttohelp,butmaynotknowwhattodo.Andforyou,itcan sometimesfeellikeoneextraburdenonyourshoulderswhenyouhaveto makethecall,sendthetextoreventhinkofthethingthatwouldhelpyou. So,youmayfindyourselfworkingtogetitalldoneinstead–“I’lljustdoit myself”–andfeelingoverwhelmedandunsupported.

Fortunately,therearethingsyoucandotohelpfriendswhowanttohelpbe helpfulinwaysthatcanhavearealimpactonyourday-to-day.

Friendscanchoosewhattheycanhandleandwhattaskstheymightbeable todotohelp:somemightrunerrands,somemightmakefood,somemight helpwithbabysittingorwithyourotherchildren,somemightjustlistento youoverthephoneoronavideocall.

“Haveonepersonyoucancallandcomplain to.Orsomebodywhoyouknowwillboostyou upwhenyouaredown.Whocanremindyouof allthegoodthingsyouhavedoneevenifyou feelliketodayyouhavedonesomething wrong.Haveatleastthatonepersonyoucan reachoutto.”

–Paula,momofLydia

fromFriends

“Iwasfortunateenoughtohaveafewreally, reallygoodfriends,justliketwoinmylifethat hadwalkedthispathandsurvivedit.Andthat wasthekeyforme,theysurvivedit.BecauseI knewIneededtosurviveittoo.”

–Brenda,momofSam

Someparentscopingwiththeirchild’sillnessfindthemselvesinacrisisof faith.Theystrivetounderstandwhytheillnesshasoccurredandwhatcanbe donetochangethecircumstances–tomakethings“right.”Othersfindthat theirfaithisstrengthenedastheyinvesttrustinsomethingoutsidetheir control.Theymayevenfeelthattheyarebeingtestedandmustrespondin faith.

Ifyouarepartofafaithcommunity,youmayfindthatfellowmembersarea sourceofstrengthandhelpforyou.Aswithfamily,however,membersofthe communitymaynotreallyknowhowtohelporsupportyou.Theymaysay thewrongthingsandyoumayfeeljudgedandturnaway.Thatisokay.What mattersisthatyoutakecareofyourselfandfindsupportwhereyoufeelmost nourished.

Ifyouhavethem,youmayseeksolaceinyourfaithtraditions,includingthe ritualsthatarepartofthesetraditions.Justasfamilyhistoryandculture influencedecisionsandcoping,somightyourreligiousupbringingor spiritualconnectionsinfluenceyourvaluesandbeliefs.Thismayhelpyou findsupportwithinadifferentcommunity.

“EverybodyhastheirownflavorofGod. Sothat'showIseeGod.Ifeelyoudon't puthiminaboxandsay,he'sthisway. He'ssogrand.Ifeelit'saninsulttoput himinaboxandsayhedoesn'tlikethis Forme,it'smoreabouttherelationship andnotthereligion.”

–Crystal,momofSydney

YourFaithandSpirituality

“Ourfaithcommunityreallyheldusup. Whenitwashardtopraytheywould prayforus”

–KatherineandNate,parentsofJoey

CPNResources

Unit:Spirituality

Guide:SpiritualityandCaregivinginPediatricIllness

TopList:8ThingstoUnderstandWhenitComestoSpirituality

andCaregivinginPediatricIllness

Watch:WhySpiritualityandReligion

IntheRoom:Doesspiritualityand/orreligionhelp?

FindingSupportWithin

Parentingachildwithaseriousmedicalconditioncanbeall-consumingand canfeelisolating.Youmayturntoyourdiseasecommunityorlocalsupport groupswhereyoumayfindhaveotherscaringforachildwithaserious medicalissueandwhoaregoingthroughsomethingsimilartoyou.Thiscan helpyourealizethatyouarenotaloneandtherearepeoplewalkingthe samepath.

However,youmayalsofindthatthesupportgroupsthatseemlikethey wouldbeagoodmatcharenotinfactmakingyoufeelbetter.Ifthisistrue foryou,understandthatthisisokay.Youwillfindsupportinotherways.

“Ithinkitishumannaturetohavea diagnosisandwanttofindpeoplewiththat samediagnosis.Ithinkthatmakestotal.If youarenotfindingwhatyouneedinthose communities,Ithinkitisimportanttokeep lookingandfinditsomewhereelse.Itcould verywellberightthereinyourhouse.It couldverywellbeanotherfamily.”

–Sarita,momofElijah

YourLocalCommunity

“Findingdifferentpocketsofpeople,and reallyworkingtonotisolate.AsIshowup formyself,Iinviteotherfamiliesandother peopletoshowupwithme.”

–Naomi,momofNoah

CPNResources

Watch:SaritaandKareemtalkaboutfindingoutsidesupport

Watch:Naomitalkaboutgriefandfindingsupport

Socialmediawarrantsitsownpagegiventhehugeroleitplaysinsociety today.Itshouldbenotedthattherearebothprosandconstosocialmediaand itisanindividualdecisiononwhetheryoufeelsocialmediaissomethingthat feelshelpfultoyouinyourcaregivingjourney.Socialmediaprovidesaccessto information,whichcanbeoverwhelmingtosomeandcomfortingtoothers. Somefeelthatparticipatinginsocialmediaisaburdeninthatitissomething elsetokeepupwith.Itcanbeaddedpressureandonemorethingonyour alreadyfullplate.Butforothers,theconnectionsandfriendshipstheybuild throughsocialmediaareworthit. Hereotherparentsreflectonhowtheyusedsocialmediaintheircarejourney.

“Itdidbecomeasourceofbuilding realfriendshipswithpeopleandhaving realconnectionswithpeople.Italso madeitveryeasytoallowour extendedfriendsandfamilytoconnect withwhatwasgoingonwithus.”

–Kerri,momofKai

“Thevoicesonsocialmediacanbeincrediblyhelpfulwhenitcomesto findingresources,beingasoundingboard,justhighlightingwhat’s availableforthisparticularcondition.Buttheycanalsobehurtfulin generatingguilt,becauseyouarenotgoingtousesomeofthose resourcesthatpeopleshared ”

–Dr.NatashaHenner

ofSocialMedia

“IdidfindsomeonlineFacebook groups.Theywerenotforme…the conversationsthatwerebeinghad–it wasn’twhatIwaslookingforatthe time…Ifoundthateventryingto respondtoquestions…itfeltlikea senseofcompetition…”

–Sarita,momofElijah

“Supportiskey.Reachingoutandfinding groups,thatformeinparticularwasa lifeline.Beingabletocommunicateto otherfamiliesandgettheirperspective ondifferenttreatmentsormedications.”

–Kate,momofBrook

CPNResources

Watch:ProsandConsofSocialMedia

Watch:Dr.NatashaHenner,perinatalandpalliativecaredoctor atLurieChildren’sHospitaltalkaboutsocialmedia

Purpose

Toorientandempowerparentsandotherscaringforchildrenwithaserious medicalcondition,byprovidingresourcesandtoolsthatreflecttheexperienceand perspectiveoffamiliesandclinicians.

Vision

Parentsandotherscaringforchildrenwithaseriousmedicalconditionhave confidencethattheyaredoingtheverybesttheycanforthechildandfamily.

WhatWeOffer

CPNisanonprofitorganizationthatprovidescurateddigitalresourcesand programmingtohelpcaregiversadvocateforchildrenlivingwithseriousillness andnavigatetheillnessjourney.AtthecenterofCPNareparentandclinician voicesthatilluminatethelivedfamilyexperienceandfocusonpsycho-socialand emotionalneeds,regardlessofdiagnosisandwithoutbias.

CPNresourcesincludevideos,podcasts,newsletters,ablog,socialmediaposts, educationalguidesandlearningpathwayswrittenforfamilies,andaclinician portalofferingmaterialsforuseinself-andcolleagueeducation.Programsinclude virtualevents,andvirtualandin-personpresentationstoclinicianaudiences, industryandpatientorganizations.CPNalsopartnerswithotherstobringthe familyperspectivetoclinicalresearchandawiderangeofcommunication(or media)outlets.