Parenting Your Complex Child: Become a Powerful Advocate for the Autistic, Down Syndrome, PDD, Bipolar, or Other Special-Needs Child

241 Pages·2006·0.81 MB·English

by  Peggy Lou Morgan

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.
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‘‘PeggyMorgangivesacompellingfirsthandaccountofthechallenges of
raisingachildwithadevelopmentaldisability.Sheprovides aunique
perspectiveonhowtoadvocateforyourchildwhenthesolutionsseem
outofreach.Greatwaytomakeadifferencewithotherparentswhoare
strugglingwithsimilarchallenges!’’
—MaryLynnO’Brien,DevelopmentalPediatricianandBoard
Member,NW AutismFoundation
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Parenting Your Complex Child
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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.
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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
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ToBillyRay,
whohastrainedhisMommiesowell,
and
toRonaldR. Roy,M.D.(‘‘Dr. Ron’’),deceased.
Dr.Ron’swords,‘‘Ifonlytheworldcouldunderstandyou
throughyourMom’searsandeyes,’’stillringinmyears asa
motivatingforcetocommunicateBillyRaytohis world.
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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
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