The Sibling Experience: What Parents Need to Know Presenters EmilyRubin
JohnKramer
JenniferWeisman
Why sibling issues matter to parents Whenwe,asparents,learnthatourchildhasadisabilityweoftenrespondby
learningeverythingwecanaboutthedisabilityandactivelyadvocatingtoensure
thatourchild’sneedsaremet.
Sometimes,weunintentionallyoverlooktheneedsofourotherchildren.
Ifourchild’sdisabilityrequiresservicesorsupportintoadulthood,weoftenarethe
onesresponsibleforensuringthatourdisabledadultchildistakencareof.
Sometimes,weneedtopassthatresponsibilityontoourotherchildrenandwe
don’talwaysknowhowtoprepareourselves–orourchildren–forthisshiftin
roles.
Purpose of this call Thepurposeofthiscallistohelpyouunderstandkeysiblingissues,understand
howtofosterapositivesiblingexperience,howtosupportyoungandadultsiblings,
andwhatresourcesareavailabletohelpyoualongtheway.
Parents: helping yourself helps your child Dealingwithachild’sdisabilityandmanagingtheassociatedfamilydynamicsis
difficulttodoalone.Themoresupportedyouare,thebetterableyouaretosupport
eachofyourchildren.Weencourageyouto
 Connectwithotherparents/caregiversofsiblingswhosharecommon
experiences.
 Getinvolvedinthesiblingsupportmovement.
The young sibling experience Whatisitliketogrowupwithabrotherorsisterwhohasadisability?
 Thesiblingexperienceisinfluencedbymanyfactors,includingtheattitudeof
parents/caregiversandthetypeofdisability.
 Siblingsofchildrenwithdisabilities/specialhealthcareneedshaveunusual
opportunitiesforgrowth,andmanyofthesesiblingsdevelopintocompassionate,
loyalandinsightfulindividuals.
 Siblingsofchildrenwithdisabilitiesfacedailychallenges;parentsandpeersmay
overlookormisunderstandthese.
 Siblingsoftengrapplewithdifficultandconflictingemotionssuchasconfusion,
shame,worry,angerandresentment.
The Sibling Experience: What Parents Need to Know, Continued How to support young siblings Whenchildrenareyoung,parentsdirectlyimpacthowachildrespondstotheir
brother/sister’sdisability.Youcanhelpyourchild
 acknowledgetheircomplexfamilylivesandtheirconflictingfeelingsearlyon.
 understandthattheyarenotresponsiblefortheirbrother/sister'sdisability;they
didn'tcauseit,notcantheyfixit.
 havetheopportunitytoexpresstheirfeelingsinasafeandnurturing‐encourage
themtoparticipateinasiblingsupportgroup.
What happens as siblings get older Theshiftfromchildtoadultcanbechallengingineveryfamily.Forsiblingsof
brothers/sisterswithadisability,thesecanbeespeciallycomplextimes.Asparents,
wemayhaveavisionofhowwewanttodefinetheirroleinthefamily.Sometimes,
thatisatoddswithwhattheywanttheirroletobe.
How to support your teen/adult child Oldersiblingsmayneedhelpandsupportinorderto
 Balance their own lives & their role as a sibling.
 Navigate a world that often defines “family” as “parents” and leaves out
siblings
 Seek opportunities to connect with other siblings informally or formally
Transitioning caregiver role to siblings Asyougetolder,youmayfindthatyouneedtotransfercaregiverrolestoyour
children.Atthisstage,youradultchildrenneedhelp
 Learning how to navigate the system;
 Understanding legal and financial issues.
 Working together as a family to make a plan for future care
Overwhelmed yet?  Forparentswhoarefocusedonmanagingasonordaughter’sdisability,learning
aboutsiblingissuescanseemdaunting.
 Acrossthestateandacrossthenation,peopleareworkingtoensurethat
siblingsaresupportedacrosstheirlifespan.
Sibling Support movement Forthelast10+years,adultsiblings,researchers,policymakers,andservice
providershavebeenworkingtoraiseawarenessofsibling‐relatedissues.
Asleadersinthismovement,weareactivelyengagedin
 supportingsiblings
 encouragingsiblingstotakeonleadershiprolesintheircommunitiesandwithin
thefieldofdisabilities,and
 promotingfamilypolicyinitiatives.
The Sibling Experience: What Parents Need to Know, Continued Since2006,TheSiblingLeadershipNetworkhasheldanannualconferenceto
discusssibling‐relatedissues,developyearlyactionplans,andsupportfamilypolicy
initiatives.
Core values/beliefs of the SLN  Wevaluefamilysupportinitsfullestextent.Thismeansthatsiblingsneedtobe
involvedtothefullestextenttheycanbe/wishtobe
 Webelievethatbrothersandsistershaveauniqueunderstanding/perspective
oftheoppressionofpeoplewithdisabilities.
 Wevalueself‐determinationofourbrothersandsisterswithdisabilitiesand
vowtosupporttheminbeingasindependentaspossible
 Webelieveinthe“dignityofrisk.”Thismeansthatwevalueprovidingour
siblingswithopportunitiestotrythingsout‐evenifitmeansfailure‐aslongas
theyhavethenecessarysupportstodoso.
MSSN: Supporting siblings in Massachusetts ThegoalofTheMassachusettsSiblingSupportNetwork(MSSN)istosupport
siblingsofpeoplewithdisabilitiesinMassachusetts.Thissupportisofferedacross
thesibling’slifespanandincludesprovidinginformation,creatingwelcoming
communitiesforsiblings,andimprovingaccesstosiblingservices.
MSSN current programs  Meetupsforadultsiblings…buildingnetworks
 Adultsiblingpaneldiscussions
 ParentAdvisoryCommittee(PAC)presentations
 Connectedwithlocalserviceorganizationsthathavesiblingsupportgroups,
suchastheARCs,etc.
MSSN future programs Toachieveourmission,wewill
 Educatesiblingsabouttheirroleinthefamilyandascaregiver
 Createcommunitiesforsiblingsthatsupportthemthroughtheirlifespan
 Improveaccesstoexistingsiblingservices
 Expandrangeofsiblingservices
Resources MassachusettsSiblingSupportNetwork
[email protected]
6178070558
Ourwebsiteandsocialmediapresencewillbecomingsoon.
SibParent–alistservjustforparentscangototalkabouttheir“other”kids.
http://www.siblingsupport.org/connect/sibparent‐a‐listserv‐just‐for‐parents
The Sibling Experience: What Parents Need to Know, Continued SiblingLeadershipNetwork
[email protected]
3397075215
www.siblingleadership.org
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