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22EntroSpring2012EssenceDonnieKanterWinokurwithChancer.BuildingBridgestoSuccessforChildrenLivingWithInvisibleDisordersJodeeKulpAnotherofJodeex19sgoalsistocompletelydestigmatizeFASD.x1cThiscanx19tbeashame-baseddisabilityx1dshesays.x1cNoonesetsouttohurtachild.Ittakescouragetocomeforward.x1dAnotherVoicefortheVoicelessTofurtherbroadenheraudienceJodeeformedBetterEndingsNewBeginningsacompanydevotedtoprovidingresourcesandstrategiestohelpfamiliesandchildrenwithFASDcopewithitsvastarrayofsymptoms.RecentlyJodeesteppedintonewterritoryhelpingtotrainthefirstcertifiedservicedogforanadultwithFASDwhichishowshemetDonnieKanterWinokur.DonniefoundChancera90-poundgoldenretrieverforheradoptedsonIyalthrough4PawsforAbilitywhichtrainsservicedogsandmatchesthemtosuitablerecipients.BothsuccessfulbusinessownersbeforechoosingtostayhometocarefortheirchildrenaffectedbyFASDJodeeandDonniebondedinstantly.Jodeerecallsx1cAsamotherofanadultdaughterstrugglingatthetimewithlifeissuesduetothedisabilitymyheartwentouttothismomofamuchyoungerchild.Irememberthinkingx18Whatifaservicedogcouldpreventsomeoftheissuesmydaughterfacedx19x1dDonniehaddiscovered4PawsforAbilityanagencythattraineddogsforspecial-needschildrenandinvitedJodeetojoininthetrainingsessionsandwatch.Thiswasthebeginningofauniquepartnershipforbothmoms.Thetwowomenco-presentedattheInternationalFASConferenceinVictoriaBritishColumbiain2008wheretheybegantalkingaboutwritingbookstogether.Donniex19s11-year-olddaughterwantedtobeinvolvedasaspokespersonforherbrotherx19sdisabilityandMyInvisibleWorldx14LifewithmyBrotherhisDisabilityandhisServiceDogwastheresult.ToldentirelyfromMorashax19sperspectivethischapterbookoffersinsightsintotheworldofamiddleschoolerlivingwithandlovingabrotherwithaninvisibledisabilityTheadditionofChancertothehouseholdwasremarkableIyalwhohaddifficultyexpressinghimselfverballybeganspeakingincompletesentencesaftertwomonthsinChancerx19sgentlesupportivepresence.WhenJodeeKulpandherhusbandKarlagreedtoprovidefostercareforadyinginfant25yearsagotheyhadnoideaJodeewascradlingherdestinyinherarms.BabyLizwhomtheKulpsadoptedthrivedunderJodeex19scarex14althoughherpuzzlingbehaviorsandangryoutburstsleftJodeeexhaustedandconfused.ItwouldbetwelveyearsbeforedoctorsdiagnosedLizx19soddsetofsymptomsasFetalAlcoholSpectrumDisorderFASD.WhenMomDrinksBabyDrinksItx19sunthinkablebutFASDaffectsoneoutofevery100infantseachyear.Thealcoholapregnantwomandrinksgoesdirectlytoherdevelopingchildx14andatthesamelevelofconcentrationthatitentersherownbloodstream.Thisdisordermeansthatthesechildrenx14bornwithahugepropensityforaddictionsx14havebrainemotionalandcognitivedamagethatwillaffectthemforalifetime.FASDchildhoodisdifficultbutwithoutpropercareandservicesadulthoodbringsintheperilofunemploymentsocialproblemscriminalactivityandmanyotherhigh-riskbehaviors.x1cWhatwex19retalkingabouthereisametabolicdisordercausedsolelybydrinkingalcoholx14adisorderthatcausesinjurynotjusttothebrainbutmanyotherorgansaswellx1dJodeeexplains.x1cAnditx19s100preventable.x1dConcernedaboutherdaughterx19slearningissuesanddifficultyreadingsocialcuesJodeebeganworkingfeverishlyfromthemomentLizwasdiagnosedtospearheadeffortsthatwouldhelpchildrenwithFASDlivesuccessfulproductivefulfillinglives.TodayLizisanadultandthankstoJodeex19scareislivingasindependentlyasshecan.ButsaysJodeex1ctheenergysheexpendsdailytoliveherlifebecauseofallthesubtledamageisunjust.x1dx1cWedonotknowwhatifanyamountofalcoholissafeThereforeitx19sinthechildx19sbestinterestforapregnantwomantosimplynotdrinkalcohol.x1dU.S.SurgeonGeneralRichardH.Carmona