Parenting Your Complex Child: Become a Powerful Advocate for the Autistic, Down Syndrome, PDD, Bipolar, or Other Special-Needs Child PDF
Preview Parenting Your Complex Child: Become a Powerful Advocate for the Autistic, Down Syndrome, PDD, Bipolar, or Other Special-Needs Child
More Advance Praise for Parenting Your Complex Child ‘‘Asaparent-cum-professionalintheautismfieldforover45years,I applaudtheenergyandwisdomPeggyLouMorganhasputintothisbook. Ibelievethebestsuccesscomeswhenparentsassumeprofessionalswant to help,even iftheydon’tyetknowhow.Suchpartnershipsproduce mostofthebestsuccessstoriesinthefieldofautism.Ms.Morganisnot onlyaskilledwriter,butalsoagoodstoryteller. Herbookshouldbea welcomed additionto theautismliterature.’’ —Ruth ChristSullivan,Ph.D.,Founder,ExecutiveDirectorof AutismServicesCenter;FirstPresidentof AutismSocietyof America(1968–1970);author,lecturer,activist, parent ‘‘Thisbookiswrittenfromtheheart.Itpresentsanhonestandopen viewofsomeof themanystrugglesencounteredbytheparentsofhighly challengingstudentswithdisabilities.InherbookParentingYourComplex ChildPeggyMorgansharessomeofthesestruggles,whichincludethose withschools,doctors,socialsituations,andmore.Shepresentsanhonest reflection ofherownfrustrationsandfearsandsharesasolution-focused perspectivethatprovedsuccessful. ‘‘Parentswhoareexperiencingseriouschallengesinadvocatingon behalfoftheirchallengingchildshould readthisbook.Readingbetween thelinesandfindingtheout-of-the-ordinaryphilosophicalapproachto partnershipsbetween parentsandthosewhoprovideservicesandsup- portsallowsparentsandprofessionalsaliketolookathowtheywork together. Ms.Morganremindsus alltokeepthefocusofoureffortson thechildandtomaintaingoodworkingrelationshipsinthefaceofadver- sityanddifferences.Sheisright!’’ —HeidiSchack,Director,SpecialServices,SilverFallsSchool District,210EastCStreet,Silverton, OR97381;Master’sof ScienceinEducationandStandardLicensureinSpecialEducation andSchoolAdministration ‘‘Peggy Morganprovides uswithatouching,sincereaccountof [herson] BillyRay’slife...amostaccurate,invaluableresource,aswell,forfami- liesfacingtheconstantchallengeofdealingwithprofoundlydevelop- mentally challengedchildren/youngadults.’’ —EdRuden,M.D. .................15702$ $$FM 01-09-0611:36:31 PS PAGEi ‘‘PeggyMorgangivesacompellingfirsthandaccountofthechallenges of raisingachildwithadevelopmentaldisability.Sheprovides aunique perspectiveonhowtoadvocateforyourchildwhenthesolutionsseem outofreach.Greatwaytomakeadifferencewithotherparentswhoare strugglingwithsimilarchallenges!’’ —MaryLynnO’Brien,DevelopmentalPediatricianandBoard Member,NW AutismFoundation .................15702$ $$FM 01-09-0611:36:31 PS PAGEii Parenting Your Complex Child .................15702$ $$FM 01-09-0611:36:31 PS PAGEiii .................15702$ $$FM 01-09-0611:36:31 PS PAGEiv Parenting Your Complex Child Become a Powerful Advocate for the Autistic, Down Syndrome, PDD, Bipolar, or Other Special-Needs Child Peggy Lou Morgan AMERICANMANAGEMENTASSOCIATION NewYork ■ Atlanta ■ Brussels ■ Chicago ■ MexicoCity ■ SanFrancisco Shanghai ■ Tokyo ■ Toronto ■ Washington,D.C. .................15702$ $$FM 01-09-0611:36:32 PS PAGEv SpecialdiscountsonbulkquantitiesofAMACOMbooksare availabletocorporations,professionalassociations,andother organizations.Fordetails,contactSpecialSalesDepartment, AMACOM,adivisionofAmericanManagementAssociation, 1601Broadway,NewYork,NY10019. Tel.:212-903-8316.Fax:212-903-8083. Website:www.amacombooks.org Thispublicationisdesignedtoprovideaccurateandauthoritative informationinregardtothesubjectmattercovered.Itissoldwiththe understandingthatthepublisherisnotengagedinrenderinglegal, accounting,orotherprofessionalservice.Iflegaladviceorotherexpert assistanceisrequired,theservicesofacompetentprofessionalperson shouldbesought. Variousnamesusedbycompaniestodistinguishtheirsoftwareandother productscanbeclaimedastrademarks.AMACOMusessuchnames throughoutthisbookforeditorialpurposesonly,withnointentionof trademarkviolation.Allsuchsoftwareorproductnamesareininitial capitallettersorALLCAPITALletters.Individualcompaniesshouldbe contactedforcompleteinformationregardingtrademarksandregistration. LibraryofCongressCataloging-in-PublicationData Morgan,PeggyLou,1950– Parentingyourcomplexchild:becomeapowerfuladvocatefortheautistic, Downsyndrome,PDD,bipolar,orotherspecial-needschild/PeggyLouMorgan. p. cm. Includesindex. ISBN0-8144-7316-4(pbk.) 1. Developmentallydisabledchildren—Care. 2. Developmentallydisabled children—Servicesfor. 3. Parentsofchildrenwithdisabilities—Attitudes. 4. Parentsofchildrenwithdisabilities—Psychology. 5. Parenting— Psychologicalaspects. 6. Communicationinthefamily. I. Title. HV891.M73 2006 649(cid:2).15—dc22 2005032514 (cid:2)2006PeggyLouMorgan Allrightsreserved. PrintedintheUnitedStatesofAmerica. Thispublicationmaynotbereproduced,storedinaretrievalsystem,ortransmittedinwholeor inpart,inanyformorbyanymeans,electronic,mechanical,photocopying,recording,or otherwise,withoutthepriorwrittenpermissionofAMACOM,adivisionofAmerican ManagementAssociation,1601Broadway,NewYork,NY10019. Printingnumber 10 9 8 7 6 5 4 3 2 1 .................15702$ $$FM 01-09-0611:36:32 PS PAGEvi ToBillyRay, whohastrainedhisMommiesowell, and toRonaldR. Roy,M.D.(‘‘Dr. Ron’’),deceased. Dr.Ron’swords,‘‘Ifonlytheworldcouldunderstandyou throughyourMom’searsandeyes,’’stillringinmyears asa motivatingforcetocommunicateBillyRaytohis world. .................15702$ $$FM 01-09-0611:36:33 PS PAGEvii .................15702$ $$FM 01-09-0611:36:33 PS PAGEviii C O N T E N T S Foreword xi Preface xiii Acknowledgments xvii PART ONE 9 TwoEssentialWords: THEJOURNEY CommunicateandAdapt 97 Life withaComplexChild 10 CreatingaLifeThatWorksfor 1 TheComplexChild 3 YourChildandYour Family 105 2 BillyRay’sStory 17 11 ServiceDogs 122 3 NotYettheBestofTimes 25 12 DocumentEverything 134 4 FeelingMisunderstood 33 13 GettingtheProfessionalsto 5 WorkingwithDoctors 42 Listen 144 6 Encounteringthe‘‘Dumb-Parent 14 CreatingaCommunityforYour Treatment’’ 54 Child 156 15 Hiring,Training,and PART TWO SupervisingCaregivers 164 CHANGINGCOURSE SolutionsandSuggestions 16 MappingtheJourney 175 7 TurningPoint 71 Appendix 185 8 TheBestTeacher—Your Index 215 Child 78 ix .................15702$ CNTS 01-09-0611:36:35 PS PAGEix
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