Table Of ContentSupportive Parenting
ofrelatedinterest
Speaking Up
APlainTextGuidetoAdvocacy(4-volumeset)
JohnTufailandKateLyon
ISBN9781843104742
Building a Joyful Life with your Child who has Special Needs
NancyJ.WhitemanandLindaRoan-Yager
ISBN9781843108412
The Complete Guide to Asperger’s Syndrome
TonyAttwood
ISBN9781843104957
Mothering Special Needs
ADifferentMaternalJourney
AnnaKarinKingston
ISBN9781843105435
Parenting Across the Autism Spectrum
UnexpectedLessonsWeHaveLearned
MaureenF.MorrellandAnnPalmer
ISBN9781843108078
Parenting the ADD Child
Can’tDo?Won'tDo?PracticalStrategiesforManaging
BehaviourProblemsinChildrenwithADDandADHD
DavidPentecost
ISBN9781853028113
Parenting a Child with Asperger Syndrome
200TipsandStrategies
BrendaBoyd
ISBN9781843101376
How to Live with Autism and Asperger Syndrome
PracticalStrategiesforParentsandProfessionals
ChrisWilliamsandBarryWright
IllustratedbyOliveYoung
ISBN9781843101840
Asperger Syndrome and Bullying
StrategiesandSolutions
NickDubin
ForewordbyMichaelJohnCarley
ISBN9781843108467
Supportive Parenting
Becoming an Advocate
for Your Child with Special Needs
Jan Starr Campito
Jessica Kingsley Publishers
London and Philadelphia
Firstpublishedin2007
byJessicaKingsleyPublishers
116PentonvilleRoad
LondonN19JB,UK
and
400MarketStreet,Suite400
Philadelphia,PA19106,USA
www.jkp.com
Copyright©JanStarrCampito2007
Allrightsreserved.Nopartofthispublicationmaybereproducedinanymaterialform
(includingphotocopyingorstoringitinanymediumbyelectronicmeansandwhetheror
nottransientlyorincidentallytosomeotheruseofthispublication)withoutthewritten
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Copyright,DesignsandPatentsAct1988orunderthetermsofalicenceissuedbythe
CopyrightLicensingAgencyLtd,90TottenhamCourtRoad,London,EnglandW1T4LP.
Applicationsforthecopyrightowner’swrittenpermissiontoreproduceanypartofthis
publicationshouldbeaddressedtothepublisher.
Warning:Thedoingofanunauthorisedactinrelationtoacopyrightworkmayresultin
bothacivilclaimfordamagesandcriminalprosecution.
LibraryofCongressCataloginginPublicationData
ACIPcatalogrecordforthisbookisavailablefromtheLibraryofCongress
BritishLibraryCataloguinginPublicationData
ACIPcataloguerecordforthisbookisavailablefromtheBritishLibrary
ISBN9781843108511
ISBNpdfeBook9781846426636
PrintedandboundintheUnitedStatesbyThomson-Shore,Inc.
To Marcus and Michael
I’m so happy and proud to be your mom
Contents
Preface 9
Acknowledgements 11
1. Why This Book? 15
Howtousethisbook 20
2. Pre-diagnosis:Is it Normal for Everything to be so Hard? 25
Ourlongjourneytoinitialdiagnosis 26
Whywasn’titobviousthatwehadaproblem? 30
Howgoodparentingcanactuallymaskdevelopmentalabnormality 33
Anoverloadtoourfamily’sfunctioning 39
Myadvicetoyou? 41
3. Obtaining a Formal Evaluation 44
Referringyourchildforevaluation:anoverviewoftheprocess 44
Canstartingtheevaluationprocesshurtmychild? 52
Howdoyoubringtheschoolintotheprocess? 54
Selectingevaluatorsforyourchild 55
OurexperienceobtaininganevaluationforMarcus 59
Whatifyou’renotsatisfiedwithanevaluation? 60
Yourroleintheformalevaluationprocess 68
HavingourMichaelevaluated:aworkstillinprogress 69
Before,during,andafterthediagnosis:emotions! 74
Usefulresources 80
4. What Next? What Does This Diagnosis Mean? 81
Donningyouremotionalarmorasyouworktomasterthecold,hardfacts 83
Myboysandhypotonia:apersonalexampleoflearningwhatadiagnosismeans 90
Knowledgewithapurpose:acquiringaneffectiveunderstandingofyourchild’s
diagnosis 98
Whattotellyourchildabouthisorherdiagnosis 106
There’salwaystomorrow 108
5. Beginning Therapeutic Interventions for Your Child 110
Selectingandschedulingtherapists 111
Recognizingyourroleinthetherapeuticinterventionprocess 119
Hookingupwithothertypesofsupportiveresources 122
Usefulresources 123
6. Marcus and Asperger’s Syndrome:An Example of How the
Manifestation of a Disorder (and One’s Parenting Role) Can
Change Over Time 125
7. Your Parenting Role,Part I:Promoting Positive Behavior
and Reducing Misbehavior in Your Child 144
Structuringyourhomelifetosupportyourchild 145
Understandingmisbehavior 151
Whenchildren’sbehaviorfallsshort:reactingto(mis)behavior 154
Usefulresources 166
8. Your Parenting Role,Part II:Increasing Your Child’s
Competence 167
Scaffoldingmorecapableperformance 169
Trainingmorecompetentbehaviors 171
Modelingcompetentperformanceandmakingtheimplicit,explicit 175
Theappropriateuseofpractice 176
9. The Special Education Process:Formulating an
Individualized Education or Family Services Plan 179
HowistheIEPortheIFSPcreated? 180
WhatisintheIEP? 183
Pullingitalltogethertocreateanappropriateinterventionplan 199
HowcanyoubestcontributetotheIEPorIFSPteam? 202
Usefulresources 209
10. Monitoring the Progress of Your Child 212
Arethetermsofyourchild’sIEPbeingimplemented? 213
Isyourchild’sIEPworking? 218
Theimportanceofputtingyourselfinthelearningloopwithyourchild 221
Whatshouldyoudowhenyouseeyourchildhavingproblems? 223
Afurthernoteonconflict 227
Usefulresources 231
11. Advocating for Your Child:It Never Ends,or Does It? 232
Helpingourchildrenbecomeadvocatesforthemselves 235
Transitioningintotheadultworld:readyornot,itwillcome! 238
Whenwordsmatter:understandingthepoliticsof“specialneeds”and
howitaffectsyourchild 243
Andno,atsomelevel,itneverends 246
Usefulresources 248
References 250
Boxes
3.1 Thecategoriesofdisabilitieseligibleforspecialeducationandrelated
servicesunderIDEA2004 58
3.2 Asummaryofwhattodoifdissatisfiedwithanevaluation 67
3.3 Yourroleintheformalevaluationprocess 68
4.1 Emotionalstrategiesforsupportingyourselfasyoufacethetaskof
understandingyourchild’sdiagnosis 89
4.2 DoIknowenough?Characteristicsofaneffectiveunderstandingofyour
child’sdiagnosis 100
4.3 Sourcesofinformationaboutyourchild’sdisability 101
5.1 Questionstoconsiderwhenchoosingatherapistforyourchild 111
6.1 CharacteristicsofAsperger’sSyndrome,anautismspectrumdisorder 126
7.1 Michael’s“GetReadyforSchool”schedule 147
7.2 Summaryofstructuralmodificationstomeetmychildren’sneeds 150
7.3 Predictabletriggerstobehavioralissuesinmyboys 152
7.4 MyowntriggerpointsforwhenImaybeleasttolerantofmychildren’s
behavior 153
7.5 Afour-stepmodelfordealingwithyourchild’smisbehavior 157
7.6 Guidelinesforeffectivediscipline 161
8.1 Increasingyourchild’scompetence 172
9.1 EarlyInterventionandtheIFSP,NewYorkState’sversion 180
9.2 ThemainpartsoftheIEP 184
9.3 Relatedservicesmostcommonlyprovidedtostudentswithdisabilities 188
9.4 PresentlevelsofperformanceandeducationalneedsfromMichael’sfifth
gradeIEP 192
9.5 Sampleareasthatare“fairgame”forIEPgoaldevelopment 196
9.6 GoalsfromMichael’sfifthgradeIEP 197
9.7 ThestepstoformulatinganIEP 199
9.8 Questionstoconsiderinevaluatingyourchild’sproposedIEP 201
10.1 Characteristicsofaproblem-solvingapproachwiththemembersofyour
child’seducationalteam 224
11.1 Whatisself-advocacy? 235
Description:When Jan Campito first entered the world of special needs, she trusted the experts to tell her what was wrong, and how to proceed to help her children. Here she was, an articulate, well-educated person, usually confident in navigating whatever situations were required, and yet she became passive and
