Stress Take a Load Off AUTISM

7/29/2019 Stress Take a Load Off AUTISM

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S P E C I A L R E P O R T Stressisanever-presentrealityinamilieswithautism.Itcolorsthewayweviewthe

world.Iinternalstressesontheamily,mar-

riage,nances,plussaetyissuesdonotgetto

you,therearealwaysexternalstressesthatcan.

Dealingwithextendedamily,educatorsand

medicalproessionalsusuallypresentadditional

opportunitiesorstresstotakehold.

Ihavegainedmuchwisdomovertheyears

bytrialanderror.Hopeully,Icanhelpyou

avoidabitotrialanderrorandencourageyou

tondwaystohelprelievethestressthatyou

andyouramilyexperience.

Internal

StreSSorS on

the FamIly

Theinternalstressesoautismonthe

amilycanrangerompracticalproblemso

achildnotsleeping,toemotionalproblems

oguiltandmaritalstrie.Manypractical

solutionsandtipsortheseissuesareoundin

mybooklet,The Child with Autism at Home

(youwillndinormationaboutmybooklets

atthearticlesconclusion).Iamonlydealing

withtheemotionalissuesorthisarticle.Resolvingthemcanmakethepractical

problemseasiertobear.

I. Stresses on Parents Guiltisoneothegreatestinternalstress-

ors.Mostouseelthatsomehowwemustbe

responsibleorourchildsautismsurelywe

causeditsomehow.Ioncemetamotherwho

blamedherselbecauseshebottle-edherchild.

ItoldherIhadbreast-edmychildrenor

overayear,andIwassurethatIhadhadtoxicmilk!Inanoddway,wewouldeelbetteriit

wassomehowunderourcontrol,butitisnot.

Autismisaworldwidephenomenon.Losethe

guiltandrealizetheonlythingyoucanreally

controlishowyouinteractwithyourchildand

thepeoplearoundyou.

Dreadisanothermajorstressor.Children

withautismdonothaveanappropriatesense

oear.Abunnywithwigglingearsmaysend

themshriekinginterror,buttheythinknoth-

ingotryingtoclimboathird-foorbalcony.

I hAvE A RuLE AT my PubLIShIngCOmPAny: yOu ARE nOT ALLOwEd

TO wRITE unLESS yOu ARE fEELInghAPPy.If you are stressed, you nee d to go out andfInd your joy and then wrIte. LIke most of my good

Ideas, I thoroughLy Ignored thIs one and trIed to

wrIte a guIde to fLorIda theme parks for famILIes of

IndIvIduaLs wIth autIsm durIng a perIod when my son,

who has autIsm, was attemptIng to jump out of second

story wIndows. the re suLt was a bo ok about aLL the

ways your chILd couLd kILL hImseLf at dIsney worLd.

needLes s to say, I had to sc rap that draft.

STRESS: TAkEA LOAd Off!AuTISm, STRESS & wAyS TOkEEP yOuR whEELS OnBy Kathy Labosh

Reprinted fromAutism Advocate, 2005, Vol. 38 No. 2. Autism Society of America


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Aparentconstantlylooksorwaystoprotectachildwith

autismromhimorhersel.Youmayeellikeyourchilds

liedependsuponyourhyper-vigilance.Ihaveconcluded

thatthethreetimesIoundNickywithhislegoutthe

windowwerepuregrace.Itookresponsibilityorxing

theproblemwithwindowalarms,butmysonsliewas

andisinthehandsoGod.Ihavetotrustthatmysonwill

continuetobesae.Iwilldomypart,butIamnotalone.

Guiltandearareyourenemies.Noonecanlivewith

themorlong.Yourchildsautismisnotyourault,nor

canyoupreventeveryaccident.Youcanonlydoyourpart

andmakepeacewithwhatyoucantdo.

II. Stresses on Siblings Siblingsotheautisticchildareotendeeplyaected

bytheamilydynamics.Sometrytobeextragoodsothat

theydonotaddstresstothehome.Theycanassumea

parent-likeroletoboththeirsiblingandparents.Such

childrenotendenyveryrealeelingsolosswhentheir

siblingdestroystheirprojectsandtoys.Parentscanaddto

thisburdenbynotallowingthesiblingstodisplaythenor-

malgive-and-takewiththechildwithautism.Tokeeppeace

inthehousehold,thetypicalchildisaskedtomakemajor

behaviormodicationstoavoidupsettingthechildwith

autism.Iapplaudtheirmaturityandsensitivity,butas

parentsweneedtorelievetheirstressesasmuchaspossible.

Siblingscanbehelpedinmanyways.Carveoutspecial

timewiththemandprovidealockedclosetorchestwhere

theycankeeptheirspecialthings.Everychildghtswithhisorhersibling.Donotuseguilttostopit.Findoutwhatthey

areupsetaboutandndawaytopositivelyaddresstheir

concerns.Eveniyoucantseeawayoutothesituation,it

meansalottosimplybeheard.Providingsympathycan

maketheinevitableeasiertobear.

III. Stresses on the Marriage Somecouplesareblessedwithlargesupportiveamilies

thathelpoutwiththechildrenandallowparentstohave

individualtimeapartorcoupletime.Many,however,do

notallintothatcategory.Ourparentsmaybetooelderlytomeetthephysicaldemandsoachildwithautism,orsimply

tooaraway.Formanyous,ourprimarysourceosupport

isourspousebutthisaddsconsiderablytothestresswithin

themarriage.Liketwodrunkards,theexhaustedcouple

leansoneachotherastheystaggerorward.

Theyearsbeorethechildgoestoschoolareparticularly

dicultonastay-at-homemother.Theonlytimeyoucan

haveabreakiswhenyourhusbandreturnshomerom

workbutthatishisonlytimeo,too.Everythingrom

haircutstoshoppingorgrocerieshastobenegotiatedand

someonealwayshastobehomewiththekids.

Thestressolivingwithachildwithautismcanbe

overwhelmingattimes,too.Itiseasytoeellikeothersarenot

doingtheirpart.Thetruthisthatevenieveryonedidtheirpart

toyoursatisaction,itwouldstillbeoverwhelming.Spouses

needtostopblamingeachotherorwhattheyarenotdoing,

andstartthankingeachotherorwhattheyaredoinggoing

towork,puttingoodonthetable,eedinganddressingthe

children.Youmightthinkthatyoushouldnthavetothank

somebodyorjustdoinghisorherjob,butbeingappreciated

buoystheheartandhealsmanywounds.Peoplewhoeelunap-

preciatedcangetresentul,andthatcreatesatoxicenviron-

ment.Thecouplebecomesphysicallyandemotionallydistantat

best,openlyhostileatworst.

Andwhataboutintimacy?Dontlaughyouremember

whatitis.Unortunately,stressandintimacyareincompatible

orbothmenandwomen.So,youneedtomakespecialeorts

torelax;otherwise,itwilleellikeonemoredemanduponan

emotionallytappedoutperson.Intimacycanrechargeyour

emotionalbatteriesandstrengthenthebondsomarriage. Ibelieveitiscrucialtothehealthothemarriagethat

eachspousehasonenighteachweekthattheycanabsolutely

countontogetoutothehouse.Moneyspentonababysitter

ismoneywellspent,iyouhaveittospend.Otheroptions

aretobarter,ortoaskorassistanceromalocalchurchor

synagogue.Timespentonyourmarriagewillalleviatestress

andhelpthetwooyouacethesituationsyouencounter

daily.Youmayeelyoucantaordthetimeoryourrela-

tionship.Theactis,youcantaordtoignoreit.Making

timenowwillavoidmorestresslater.



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IV. Financial Stresses Autismcanplacenancialstrainsonamiliesinseveral

dierentways.Someamiliesspendortunesontherapies

andtreatmentsortheirchild.Wevespentmoneyadapting

ourhouseorNickyandreplacingsomeothethingsthat

hesbrokenovertheyears.

Itcanseemalmostblasphemoustoplacemoneycon-

cernsaboveyourchildswelare.Youprobablyeelthatiit

helpsyourchild,theneverypennyisworthit.Thetroubleis

thatmanythingsdontwork.Ihavetriedsometreatments

thatIamconvincedcausedmychildtoregress.Beoreyou

spendalotomoneyandsubjectyourchildtoquestionable

andperhapsdangeroustreatments,wait.Askotherswho

havedoneit.Watchtheirchildoraewmonths.Isthe

childdoingbetter?Couldtheimprovementbetheresulto

someothertherapy?

Stressspendingcansinkanancialship.Somepeoplespendmoneyonclothesortrips,buthonestly,moststress

spendingthatIhaveseenisonthekids.Peoplebuyevery

toy,video,gadgetandcomputergamethattheythinkmay

interesttheirchild.Whentheeelingohopelessnessover

autismthreatenstooverwhelmthem,theyholditatbay

withanewsetotoysthatmightmakethedierence.O

course,toomanychoicescanoverwhelmthechild,butas

parentsweeeltheneedtodosomething.

Abettersolutionwouldbetosetupatoyexchangewith

otherparents.Iyouhavetoysthatyourchilddoesntwant,

exchangeitwithanotherparentoradierenttoy.Thetoys

donotgotowasteandyourchildgetsavarietyogadgets

toplaywith.Rememberingthatmoneywontsolveallo

yourchildsproblemsmaybethekeytoalleviatingsomeo

yournancialstress.

external StreSSorS

on the FamIly Theinternalstressorsmaybesomewhatunderyour

control,butwhenitcomestodealingwiththeoutside

world,everythingismoredicultorparentsoautisticchildren.Icouldwriteabookaboutthosestressesandhow

todealwiththem.Inact,Idid.The Child with Autism Goes

to Townisatipsbooklettohelpamilieswithautismdeal

withthosenecessaryinteractionswithsociety.Thoseissues

areonlycoveredlightlyinthisarticle.Instead,Iwantto

ocusonhowtointeractwithotherstogetthephysicaland

emotionalsupportthatyouandyourchildneed.

I. Stresses from the Extended Family Probablythestresswithyourextendedamilybegan

beoreyoueverheardthewordautism.Whenitbecame

obviousthatthechildwashavingbehaviorissues,your

extendedamilyprobablygaveplentyohelpuladvice.

Andthatadviceotendoesntendaterthediagnosis.Ocourse,ithelpstorememberthatthoseoeringtheadvice

trulywanttohelp.Theyloveyourchildandyou.

Muchothestressoconstructivecriticismcouldbe

alleviatedipeoplewouldlearntosandwichtheiradvice

betweengenuinecompliments.Forexample,Idonot

knowhowyouhavethestaminakeepingupwiththatkid

nightaternight.Ithinkiyoukeptyourhousewarmer,

hewouldsleepbetteroryou.Youaresuchagoodmom;

youdeserveagoodnightssleep.Itisreallyhardtoget

oendedwhensomeonearmsyourworthanddignity

whiledeliveringadvice.

II. Stresses with the Medical Community Whenmyhusbandwasinmedicalschoolinthelate

1980s,hewastoldthatautismwassorarethathewould

probablyneverencounteracaseoitinhislietime.

Pediatricianswerenotevenrequiredtostudyit.Thesedays,

peopleshouldnotencounterthereluctancetodiagnose

autismorpervasivedevelopmentaldisorder(PDD)that

thosewitholderchildrenencountered.Nevertheless,

gettingtreatmentnotjusttreatmentorautismbut

treatmentorhealthproblemsthechildcannotdescribeisonlyslowlyimproving.

Iheardastoryaboutadoctorwhosawachildwith

autismbroughtinorconstantlybitinghishand.Thedoctor

tookthetimetolookdownhisthroatandsawthatitwas

ulloulcersromacidbackwash.Aprescriptionoantacids

xedtheproblem.Manydoctorswouldhavejustsaidthat

thehandbitingwasasymptomoautismandprescribedan

anti-psychotic.Thisandotherdoctorsarestartingtoswap

symptomsthatautisticchildrenmaydisplaywhentheyare

ill,soperhapsthereisanewdaycomingorourchildrenin

themedicalcommunity.

III. Stresses with Educators Whenitcomestogettingappropriateeducationor

theirchildren,someparentsliterallybetthehouse.They

setuptheirownin-homeprogramsorprivateschools,

undingitwithhome-equityloansandundraisers.They

usuallyendupsuingtheschooldistricttocoverthecost

otheprogrambecausethedistrictsprogramwasnotap-

propriate.Ihonestlydonotknowhowtheydoit,butI



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knowIowethemahugedebtogratitude.Onemotherin

ourschooldistrict,JaeDavis(see accompanying article by

Jaes husband, Bill),whosesonisoneyearolderthanmy

oldest,oughtlikecrazybecausetherewasnoautism

programinLancasterCounty,Pa.Shemadethempayor

herin-homeprogram.Thenextyear,mysonSamentered

therstclassspeciallydesignedorchildrenwithautism

usingABA.Everyyearshekeptuppingtheanteonthe

schooldistrict.Whenshediedatage43,mysonswere

gettingABAandVerbalBehaviorTherapyandherson

wasnallyinourschools.Iyouknowosomeoneinyour

communitystrugglingnanciallytoeducatetheirchild,

gototheirundraisers.Itreallybenetsusall.

Ontheotherhand,pleaseremember,nobodygoesinto

specialeducationbecausetheyhatechildren.Theywishmore

thananybodythattheyhadabiggerbudgetandmoresta

toworkwithbuttheyareworkingwithbudgetsdeter-

minedbyelectedocials.Autismeducationreormneedstostartinthelocal,stateandederalbudgets.Familiesdonot

havethepoliticalcloutordeeppocketsoaNationalRife

AssociationorNationalOrganizationorWomen,butour

childrenonlyhaveourvoice.Untilautismeducationis

properlyunded,sharingservices,moneyandstawith

othersisareality.Usesomeoyourstressenergytomotivate

youtobeavoiceorchange.

IV. Take a Break Getoutothehouseandawayromthekidsorawhile.

Askamilyorriendstohelp.Say,Ireallyneedabreak.Isthereatimeinyourschedulewhenyoucouldgivemeone?

Thatchangesthequestionromcanyoutowhencan

you?Iamilyandriendscannothelp,askyourchurchor

synagogue.Somementalhealthandmentalretardation

agencieshaveundsoramilyrespiteandthenameso

peopleintheareawillingtowatchchildrenwithspecial

needs.Ask,ask,askandsoonenoughyouwillreceive.

Mutually Rewarding Opportunities IwillbeoeringmytipsbookletsThe Child with Autism

Goes to Town, The Child with Autism at Homeandmyuturebooklet,The Child with Autism Goes to Florida,through

theAutismSocietyoAmerica.Youwillgethundredso

practicaltipsoneveryareaoliewithachildwithautism,

ASAwillgetneededundstocontinueadvocatingorour

childrenandIwillgettheundstokeepdevelopingnew

resourcesortheamily.YoucanbuythemromASA,or

atmyWebsitewww.laboshpublishing.com. TypeinASA

inthecouponcode,andIwillsendadonationtoASA.

Now,gondyourjoy.

AbOuT ThE AuThOR KathyLaboshisthemotherotwoboyswith

autism.

Sheisalsotheounder

oLaboshPublishinginEastPetersburg,Penn.,which

producestipsbookletsor

amiliesandisdeveloping

adaptedacademictextbooksortheautistic

learner.Sheistheauthoro

twobooklets,The Child with

Autism Goes to TownandTheChild with Autism at Home.


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Stress Take a Load Off AUTISM