Effective Practices for Effective Practices for Supporting Individuals with Supporting Individuals with

Fetal Alcohol Spectrum Fetal Alcohol Spectrum Disorder (FASD)Disorder (FASD)

Presented by Nancy Hall on behalf of Presented by Nancy Hall on behalf of

The Southern Network of Specialized CareThe Southern Network of Specialized Care

Presenter InformationPresenter Information

• Currently, Facilitator for The Southern Network of Currently, Facilitator for The Southern Network of Specialized CareSpecialized Care

• Previously, FASD Community Development Facilitator Previously, FASD Community Development Facilitator representing 29 service delivery agencies, doctors and representing 29 service delivery agencies, doctors and parents working in the Hamilton, Burlington, Niagara and parents working in the Hamilton, Burlington, Niagara and H/N communitiesH/N communities

• Worked in social services for over 20 years as program Worked in social services for over 20 years as program manager supporting individuals with physical, manager supporting individuals with physical, developmental and mental health issuesdevelopmental and mental health issues

• Specializing in behavioural consultation and interventionSpecializing in behavioural consultation and intervention• Member of the FASD Ontario Network of ExpertiseMember of the FASD Ontario Network of Expertise

The information The information presented here is, presented here is,

primarily, the results of primarily, the results of a research paper a research paper produced by the produced by the

Support and Support and Intervention Working Intervention Working

Group of the Group of the FASD Ontario Network ofFASD Ontario Network ofExpertise (FASD ONE) Expertise (FASD ONE)

See See www.fasdontario.cawww.fasdontario.ca to to find this document, as well find this document, as well as documents dedicated to as documents dedicated to

Respite Needs and Respite Needs and Education.Education.

Towards a Provincial Strategy

Advancing Effective Service Provider Practices in Fetal Alcohol Spectrum Disorder (FASD)

2010

Intervention and Support Working Group

Advancing Effective Service Advancing Effective Service Provider Practices in OntarioProvider Practices in Ontario

Goals: Goals: • To determine what practices are most To determine what practices are most

effective with individuals affected by effective with individuals affected by FASD- resulted in a review of existing FASD- resulted in a review of existing resources/literatureresources/literature

• To determine if service providers in To determine if service providers in Ontario are using these practices- survey Ontario are using these practices- survey of the parents/caregivers of children with of the parents/caregivers of children with FASD in Ontario FASD in Ontario

ResultsResults• Eight primary effective practices were identified as Eight primary effective practices were identified as

critical in the successful support of this population;critical in the successful support of this population;--Emphasis on early diagnosisEmphasis on early diagnosis-Training and education in FASD-Training and education in FASD-A paradigm shift to a positive, strength-based -A paradigm shift to a positive, strength-based approach approach-Structure, routine and supervision-Structure, routine and supervision-Effective communication approaches-Effective communication approaches-Awareness of and supports for Sensory -Awareness of and supports for Sensory

Processing Processing Disorders Disorders--Collaborative servicesCollaborative services-The need for life-long interdependent supports-The need for life-long interdependent supports

• 30 service providers in Ontario were identified as 30 service providers in Ontario were identified as effective and all 30 confirmed their consistent support effective and all 30 confirmed their consistent support and/or use of these eight practicesand/or use of these eight practices

Acknowledgements Acknowledgements

• Stephanie Jones, co-author of the booklet Stephanie Jones, co-author of the booklet “Strategies Not Solutions”. Stephanie has “Strategies Not Solutions”. Stephanie has acted as a case consultant and has been acted as a case consultant and has been training professionals in both FASD and training professionals in both FASD and successful intervention techniques since successful intervention techniques since 2002 2002

• Ann Streissguth, 1997Ann Streissguth, 1997• Dan Dubovsky from Dan Dubovsky from SAMHSA FASD Center SAMHSA FASD Center

for Excellence, Rockville MD for Excellence, Rockville MD • Nathan Ory, M.A.Nathan Ory, M.A.• Diane Malbin, MSW from FASCETS, Portland, Diane Malbin, MSW from FASCETS, Portland,

OregonOregon

Fetal Alcohol Spectrum Disorder Fetal Alcohol Spectrum Disorder (FASD)(FASD)

FASD is an umbrella term referring to a range of FASD is an umbrella term referring to a range of disabilities resulting from prenatal exposure to disabilities resulting from prenatal exposure to alcohol. This includes:alcohol. This includes:

FAS- Fetal Alcohol Syndrome-FAS- Fetal Alcohol Syndrome- all three facial all three facial features, neurological damagefeatures, neurological damagepFAS- Partial Fetal Alcohol Syndrome-pFAS- Partial Fetal Alcohol Syndrome- 2 out 2 out of 3 features, neurological damageof 3 features, neurological damageARND- Alcohol Related Neurodevelopmental ARND- Alcohol Related Neurodevelopmental Disorder-Disorder- no facial features, neurological no facial features, neurological damagedamage

FAS – only the tip of the icebergFAS – only the tip of the icebergFAS & FAS & pFAS>pFAS> Collectively represent Collectively represent

approx. 15% of those approx. 15% of those affectedaffected

ARND>ARND>Represents 85+Represents 85+% of those affected- % of those affected- most will go most will go unrecognized unrecognized

Current research tells Current research tells us that at least us that at least 11 out out of of every 100every 100 people is people is affected by prenatal affected by prenatal exposure to alcohol- exposure to alcohol- this is permanent brain this is permanent brain damagedamage

FASD: Impact on the IndividualFASD: Impact on the Individual““Of all the substances of Of all the substances of

abuse (including abuse (including marijuana, cocaine and marijuana, cocaine and heroin), alcohol heroin), alcohol produces, by far, the produces, by far, the most serious most serious neurobehavioural neurobehavioural effects to the fetuseffects to the fetus” ”

-IOM Report to Congress, 1996-IOM Report to Congress, 1996

FASD is the leading cause FASD is the leading cause of disability and with of disability and with 10% also having a 10% also having a developmental delay, it developmental delay, it is also the leading is also the leading cause of developmental cause of developmental delay.delay.

FASD Behavioural ProfileFASD Behavioural Profile- - Reflects Poor Executive and Adaptive FunctioningReflects Poor Executive and Adaptive Functioning

Inconsistent performanceInconsistent performancePoor regulation of emotion- Poor regulation of emotion- acts immatureacts immaturePoor memory-erratic (esp. Poor memory-erratic (esp. short-term)short-term)Lack of abstract reasoningLack of abstract reasoningFailure to predictFailure to predictDo not understand cause and Do not understand cause and effecteffectFails to generalizeFails to generalizeTendency to be oppositional or Tendency to be oppositional or boastful with figures of boastful with figures of authority authority

Poor self-monitoringPoor self-monitoringPoor sense of selfPoor sense of selfStrong verbal expressionStrong verbal expressionPoor receptive language Poor receptive language Short attention Short attention span-erratic/impulsivespan-erratic/impulsiveDifficulty with time conceptsDifficulty with time conceptsDifficulty with transitionsDifficulty with transitionsAppears unmotivated/ lazy Appears unmotivated/ lazy (cannot ‘walk the talk’) or (cannot ‘walk the talk’) or manipulativemanipulativeSensory sensitivities very Sensory sensitivities very prevalent- watch the prevalent- watch the environmentenvironment

Secondary DisabilitiesSecondary Disabilities

Mental health problems-*research may redefine Mental health problems-*research may redefine this as a primary disability with 95% affected also this as a primary disability with 95% affected also having MH problemshaving MH problems

Disrupted school experiences (68%)Disrupted school experiences (68%)

Confined in prison/treatment centre (55%)Confined in prison/treatment centre (55%)

Trouble with the law (68%)Trouble with the law (68%)

Inappropriate sexual behaviour (52%)Inappropriate sexual behaviour (52%)

Alcohol and drug problems (30-35%)Alcohol and drug problems (30-35%)

Problems with employment (70%) and living Problems with employment (70%) and living independently (82%) independently (82%)

Effective Intervention and Effective Intervention and SupportSupport

DiagnosisDiagnosis

• Diagnosis is critical for Effective InterventionDiagnosis is critical for Effective Intervention• Research indicates that prognosis is best with Research indicates that prognosis is best with

diagnosis before the age of sixdiagnosis before the age of six• Accurate diagnosis assists caregivers to Accurate diagnosis assists caregivers to

understand the disability and adjust intervention understand the disability and adjust intervention strategies- Typical behavioural supports tend to strategies- Typical behavioural supports tend to be ineffectivebe ineffective

• Appropriate support and understanding acts as a Appropriate support and understanding acts as a protective factor against secondary disabilities protective factor against secondary disabilities

Diagnosis Diagnosis (cont.)(cont.)

• To reduce unrealistic expectations-look more To reduce unrealistic expectations-look more capablecapable

• Allows for life long planning for supportsAllows for life long planning for supports• This information may result in the prevention of This information may result in the prevention of

other affected children (education, monitoring other affected children (education, monitoring and support for mom)and support for mom)

• Using a pre-screening tool to identify those Using a pre-screening tool to identify those potentially affected or “thinking FASD first…” in potentially affected or “thinking FASD first…” in the absence of diagnostic services will reduce the absence of diagnostic services will reduce the occurrences of damage to the child through the occurrences of damage to the child through inappropriate interventionsinappropriate interventions

• Early recognition allows for better outcomes for Early recognition allows for better outcomes for both the individual and their familyboth the individual and their family

Comparing FASD, ADHD and Comparing FASD, ADHD and Oppositional Defiant DisorderOppositional Defiant Disorder

Dan Dubovsky, 2008Dan Dubovsky, 2008

FASDFASD ADHDADHD Oppositional Defiant Oppositional Defiant DisorderDisorder

Do not complete tasksDo not complete tasks Do not complete tasksDo not complete tasks Do not complete tasksDo not complete tasks

-may or may not take in -may or may not take in informationinformation-cannot recall cannot recall information when information when neededneeded-cannot remember what cannot remember what to doto do

-takes in information-takes in information

-can recall information -can recall information when neededwhen needed

-get distracted-get distracted

-takes in information-takes in information

-can recall information -can recall information when neededwhen needed

-choose not to do what -choose not to do what they are toldthey are told

Provide one direction at Provide one direction at a timea time

Limit stimuli and Limit stimuli and provide cuesprovide cues

Provide positive sense of Provide positive sense of control; limits and control; limits and consequencesconsequences

Beliefs Dictate InterventionsBeliefs Dictate Interventions

Behaviours are willful =PunishBehaviours are willful =Punish

Behaviours are symptoms =SupportBehaviours are symptoms =Support

**Education and Training in FASD is Education and Training in FASD is critical to this understanding!critical to this understanding!

Behaviors, Misconceptions and Behaviors, Misconceptions and Accurate InterpretationAccurate Interpretation

BehavioursBehaviours MisconceptionMisconception Accurate InterpretationAccurate Interpretation

NoncomplianceNoncompliance Willful misconduct, Willful misconduct, attention seeking, attention seeking, stubborn, everyone does stubborn, everyone does this at timesthis at times

Difficulty translating Difficulty translating verbal direction into verbal direction into action, doesn’t action, doesn’t understand, chronic understand, chronic memory problemsmemory problems

Repeatedly making the Repeatedly making the same mistakessame mistakes

Willful misconduct, Willful misconduct, manipulativemanipulative

Cannot link cause to Cannot link cause to effect, can’t see effect, can’t see similarities, difficulty similarities, difficulty generalizinggeneralizing

Often late or doesn’t Often late or doesn’t attend appointments at attend appointments at allall

Lazy, slow, willful Lazy, slow, willful misconduct, lots of misconduct, lots of people are latepeople are late

Can’t understand the Can’t understand the abstract concept of time, abstract concept of time, needs assistance needs assistance organizing, needs organizing, needs ongoing support and ongoing support and remindingreminding

Behaviors Misconceptions and Behaviors Misconceptions and Accurate InterpretationAccurate Interpretation

BehavioursBehaviours MisconceptionsMisconceptions Accurate InterpretationAccurate Interpretation

Not sitting still/fidgetingNot sitting still/fidgeting Seeking attention, Seeking attention, bothering others, willful bothering others, willful misconduct, normal for misconduct, normal for this agethis age

Neurologically based Neurologically based need to move while need to move while learning/listening, learning/listening, sensory overloadsensory overload

Poor social judgmentPoor social judgment Poor parenting, willful Poor parenting, willful misconduct, misconduct, neglected/abusive neglected/abusive childhoodchildhood

Unable to interpret social Unable to interpret social cues from peers/others, cues from peers/others, can’t control impulsescan’t control impulses

Overly physicalOverly physical Willful misconduct, Willful misconduct, deviancydeviancy

Hyper or hypo-sensitive Hyper or hypo-sensitive to touch & environment, to touch & environment, can't understand social can't understand social cues regarding cues regarding boundariesboundaries

Why Education and Training?Why Education and Training?

There is a prevalent lack of knowledge of FASD There is a prevalent lack of knowledge of FASD and its effects in both the general public and the and its effects in both the general public and the medical fieldmedical fieldIn addition to the problem of no diagnosis we In addition to the problem of no diagnosis we see high rates of misdiagnosissee high rates of misdiagnosisDiagnosis is not enough…we must then Diagnosis is not enough…we must then understand the affects of FASD and what understand the affects of FASD and what supports will result in success- typical supports will result in success- typical behavioural approaches are not usually behavioural approaches are not usually successfulsuccessfulEducation of professionals is equally important Education of professionals is equally important to the education of family and of the individual to the education of family and of the individual themselvesthemselves

Paradigm Shifts- Changing Paradigm Shifts- Changing understandingunderstanding

From Seeing Person as:From Seeing Person as:

-Won’t-Won’t-Bad-Bad-Lazy-Lazy-Lies-Lies-Doesn’t Try-Doesn’t Try-Mean-Mean-Doesn’t Care, shuts -Doesn’t Care, shuts downdown-IS a problem-IS a problem-Acts Immature-Acts Immature

To understanding Person To understanding Person as:as:

-Can’t-Can’t-Frustrated, challenged-Frustrated, challenged-Tried Hard-Tried Hard-Confabulates/ fills in-Confabulates/ fills in-Exhausted/ can’t start-Exhausted/ can’t start-Defensive, hurt, abused-Defensive, hurt, abused-Cannot show feelings-Cannot show feelings

-HAS a problem-HAS a problem-Is dysmature-Is dysmature

Changing What we DoChanging What we DoFrom:From:

--AssumingAssuming

-Punishing-Punishing

-High Expectations-High Expectations

-Failure-Failure

-Changing People-Changing People

-Trying Harder-Trying Harder

ToTo::

-Observing-Observing

-Preventing Problems-Preventing Problems

-Appropriate Expectations-Appropriate Expectations

--SuccessSuccess

-Changing Environments-Changing Environments

-Trying Differently-Trying Differently

Paradigm ShiftParadigm Shift

• UNABLE not unwilling to understand UNABLE not unwilling to understand consequencesconsequences

• ““We must move from viewing the individual as We must move from viewing the individual as failing if s/he does not do well in a program to failing if s/he does not do well in a program to viewing the program as not providing what the viewing the program as not providing what the individual needs in order to succeed.”individual needs in order to succeed.”Dubovsky 2000Dubovsky 2000

• We are changing what We are changing what

WE do, not the personWE do, not the person• ““If they could get it for themselves, If they could get it for themselves,

they wouldn’t need us!” they wouldn’t need us!”

Dubovsky 2007Dubovsky 2007

The Big Picture- Paradigm ShiftThe Big Picture- Paradigm Shift

We know they aren’t doing it on purpose and they We know they aren’t doing it on purpose and they cannot understand consequences, so now cannot understand consequences, so now

what??what??• Get Curious: Get Curious: When you seek to change the When you seek to change the

individual, ask yourself what is it that you also individual, ask yourself what is it that you also need to change.need to change.

• Notice your own reactions Notice your own reactions • Catch yourself assumingCatch yourself assuming• Observe disruptions in routineObserve disruptions in routine• Look at the environment Look at the environment

Think Can’t not Won’t- How Do We Think Can’t not Won’t- How Do We Adapt?Adapt?

FASD FASD looks looks like…like…

What What we we

want…want…

How we How we feel feel

about about it…it…

What What we do… we do…

our our reactionreaction

The The

ResultsResults

Re-Re-frame frame and and

PreventPreventRigid, Rigid, perseveratesperseverates, difficulty , difficulty stopping/stopping/

changing changing activitiesactivities

Stop when Stop when told, no told, no resistanceresistance

He/she is He/she is controlling controlling oppositional oppositional and bossyand bossy

Interrupt, Interrupt, assert assert control, control, require require transitiontransition

Resistance,Resistance,

Anger,Anger,

BIG TantrumBIG Tantrum

Adjust Adjust workload to workload to achieve achieve closure, give closure, give timetime

Sensory Sensory issues- over issues- over stimulated, stimulated, over over whelmed, whelmed, distractabledistractable

Pay Pay attention, Sit attention, Sit still, ignore still, ignore distractionsdistractions

He/she is not He/she is not trying, trying, undisciplinedundisciplinedoff task, off task, ADD, ADD, Irritated, Irritated, AngerAnger

Punish, Punish, more work, more work, medicate, no medicate, no recessrecess

Agitation, Agitation, anger, anger, avoidance, avoidance, anxiety, anxiety, tantrumstantrums

Evaluate the Evaluate the environment, environment, reduce reduce stimulation, stimulation, provide provide breaksbreaks

Start with Seeing SuccessStart with Seeing Success

• Attendance is successAttendance is success• Not having secondary disabilities is successNot having secondary disabilities is success• Having a good day is more important than Having a good day is more important than

completing all assignmentscompleting all assignments• Learning how to self monitor and self regulate is Learning how to self monitor and self regulate is

just as important as learning mathjust as important as learning math• Giving the words is not giving the answersGiving the words is not giving the answers• If he is successful in 1 class than why push for If he is successful in 1 class than why push for

more?more?

Positive Strength Based ApproachPositive Strength Based Approach

Assessment includes determining strengths and Assessment includes determining strengths and weaknessesweaknesses

Includes;Includes;

-what they do well?-what they do well?

-what do they like?-what do they like?

-what are their best qualities?-what are their best qualities?

-what do you like about them?-what do you like about them?

A good program should have a ‘no eject’ policy A good program should have a ‘no eject’ policy because of brain based behaviourbecause of brain based behaviour

Using a Strength Based ApproachUsing a Strength Based ApproachEffective programs understand behaviors are the Effective programs understand behaviors are the result of permanent brain damage- it is not see as result of permanent brain damage- it is not see as willful willful A positive approach;A positive approach;

- moves from punishment to understanding and - moves from punishment to understanding and changing the environment or expectationschanging the environment or expectations

-moves from trying to change symptoms to changing -moves from trying to change symptoms to changing our reactionsour reactions

-has no negative carry-over from one day to the next-has no negative carry-over from one day to the next -the inventory of strengths includes family and -the inventory of strengths includes family and

service provider strengths to determine strong service provider strengths to determine strong supportssupports

-positive/strength based activities are never used as -positive/strength based activities are never used as a treat or punishment resulting from good or bad a treat or punishment resulting from good or bad behaviourbehaviour

Strengths of People with FASDStrengths of People with FASD

great speakersgreat speakers

working with hands

friendlycaring

trusting

creative

don't give up easily

musicalartistic

““Find something that the person Find something that the person does well (that is safe and legal) does well (that is safe and legal) and arrange to have the person and arrange to have the person do that regardless of behaviour”do that regardless of behaviour”

A Positive Outcome Means A Positive Outcome Means Talking about FASDTalking about FASD

• Talk about FASD – no shameTalk about FASD – no shame

• FASD is a disabilityFASD is a disability

• The ability to express their challenges The ability to express their challenges and strengths will help them advocate and strengths will help them advocate for themselves in adulthoodfor themselves in adulthood

Structure Supervision Structure Supervision SupportSupport

• Supervision is an absolute MUST. All the time- Supervision is an absolute MUST. All the time- type/intensity dependent on functional level. type/intensity dependent on functional level.

• Structure keeps the person anchored in time and Structure keeps the person anchored in time and reduces anxiety.reduces anxiety.

• Helps them think less-anticipate/predict moreHelps them think less-anticipate/predict more• Means doing the same thing, in the same order, Means doing the same thing, in the same order,

in the same manner (with the same cues and in the same manner (with the same cues and prompts) and with the same expectations. These prompts) and with the same expectations. These are the rules.are the rules.

• Make a plan of things he is good at/enjoys- for Make a plan of things he is good at/enjoys- for activities when there is noneactivities when there is none

Structure Supervision Structure Supervision SupportSupport

• Support means modeling, cueing, Support means modeling, cueing, prompting and getting everyone on board prompting and getting everyone on board with it.with it.

• What is modeling?What is modeling?-Think Aloud-give key self talk phrases-Think Aloud-give key self talk phrases-Follow through-Follow through-Write out pro / con lists-Write out pro / con lists-Make the connection again later when they are -Make the connection again later when they are

readyready

Support (continued)Support (continued)Focus on what they can do;Focus on what they can do; ensure ensure

expectations are within their capacity. expectations are within their capacity. --If they fail to follow through on a task, shows If they fail to follow through on a task, shows signs of anxiety or frustration, some form of signs of anxiety or frustration, some form of accommodation is required accommodation is required -Consider inconsistent performance on tasks-Consider inconsistent performance on tasks

Step in earlyStep in early to prevent escalation of problems to prevent escalation of problems-Poor problem solving skills means they have -Poor problem solving skills means they have limited capacity to adapt their responses limited capacity to adapt their responses --Brain impairment means they cannot self-Brain impairment means they cannot self-correct and will repeat mistakes (perseverate)correct and will repeat mistakes (perseverate)

Structure Supervision Structure Supervision SupportSupport

If there is GoingIf there is Goingto be a Changeto be a Change

• ““I have an announcement, there is going to be a I have an announcement, there is going to be a change. Sometimes that happens but I’m not change. Sometimes that happens but I’m not going to have a big hairy fit about it.”going to have a big hairy fit about it.”

• Show them what the expected behaviour looks Show them what the expected behaviour looks like.like.

• If time, change the calendar, write a post-it note. If time, change the calendar, write a post-it note. Organize for them.Organize for them.

Repeat after me: Repeat after me: PreventionPrevention(Overall)(Overall)

• lock up your purse, cupboards and fridge. lock up your purse, cupboards and fridge. Colour code her things. Sew up/rip up pockets. Colour code her things. Sew up/rip up pockets. Ask “Should we search your pockets?” Ask “Should we search your pockets?”

• Be their external brain. If you know something Be their external brain. If you know something bad is going to happen if…. Don’t let it happen.bad is going to happen if…. Don’t let it happen.

• Be ready. A birthday + long weekend + sharing Be ready. A birthday + long weekend + sharing your attention = disasteryour attention = disaster

Memory StrategiesMemory Strategies• Keep your routine!!! Keep your routine!!!

““Tacos on Tuesdays” Tacos on Tuesdays” ““House cleaning on Saturdays”House cleaning on Saturdays”

• Colour-code to a calendar or day timerColour-code to a calendar or day timer

• Schedule in lockerSchedule in locker

• Post lists, charts, pictures- visual cuesPost lists, charts, pictures- visual cues

• Review, reteach, remindReview, reteach, remind

• ““Give gentle reminders rather than nags and then watch him Give gentle reminders rather than nags and then watch him like a hawk” faslinklike a hawk” faslink

Communication Supports Communication Supports • Individuals with FASD tend to be very verbal with little Individuals with FASD tend to be very verbal with little

content.content.

• Receptive language is more impaired than expressive. Receptive language is more impaired than expressive. This presents as a larger problem when we consider that This presents as a larger problem when we consider that successful outcomes are reliant on receptive language in successful outcomes are reliant on receptive language in many situations. Including; many situations. Including;

-parenting techniques -parenting techniques -education-education -justice system and-justice system and -treatment (motivational interviewing, cognitive -treatment (motivational interviewing, cognitive

behavioural therapy, group therapy and AA/NA behavioural therapy, group therapy and AA/NA groups) groups) Dubovsky, 2008.Dubovsky, 2008.

• Consider the total communication approach. Pairing Consider the total communication approach. Pairing words with pictures, photos, gestures and signs.words with pictures, photos, gestures and signs.

Communication SupportsCommunication Supports• Match your language to that of the level of the Match your language to that of the level of the

person. Consider variations depending person. Consider variations depending emotional state.emotional state.

• Use eye contact and exact repetitionUse eye contact and exact repetition• 10 words or less, simple and clear10 words or less, simple and clear• Come to the end of the thought and wait a few Come to the end of the thought and wait a few

seconds seconds • Avoid giving instructions in places where you Avoid giving instructions in places where you

can’t control the environment (the mall)can’t control the environment (the mall)• Body/facial expression exaggeratedBody/facial expression exaggerated• State directions in positive terms (what they can State directions in positive terms (what they can

do vs what they cannot do)do vs what they cannot do)• Check for concrete understandingCheck for concrete understanding

Communication Supports Communication Supports (cont.)(cont.)

• Refrain from the use of sarcasm and ensure Refrain from the use of sarcasm and ensure individual has jokes explained to reduce individual has jokes explained to reduce misunderstanding and conflict-concretemisunderstanding and conflict-concrete

• Always refer to persons in a group not ‘they’ Always refer to persons in a group not ‘they’ or ‘them’- be concreteor ‘them’- be concrete

• Link one task to another to establish Link one task to another to establish sequences i.e. the bus comes after breakfastsequences i.e. the bus comes after breakfast

• Use sign language if possibleUse sign language if possible• Be careful with abstract words (‘get ready’) or Be careful with abstract words (‘get ready’) or

generalize (‘watch’)generalize (‘watch’)

Abstract LanguageAbstract Language• Why?, Wait, Watch, ListenWhy?, Wait, Watch, Listen• Get ready, Clean upGet ready, Clean up• Join, Get in lineJoin, Get in line• Respond, ChooseRespond, Choose• Be responsible/appropriateBe responsible/appropriate• Do it later, WaitDo it later, Wait• Use your words, Ask for helpUse your words, Ask for help• What are you feeling?What are you feeling?• ““When you’re done, take a cab home.”When you’re done, take a cab home.”

Visual CuesVisual Cues

Visual cues can be used to reduce the amount of Visual cues can be used to reduce the amount of verbal communication required. It can be used verbal communication required. It can be used to communicate;to communicate;

• Physical BoundariesPhysical Boundaries• RulesRules• Personal RoutinesPersonal Routines• SchedulesSchedules• Anger Management PlansAnger Management Plans• Etc.Etc.

Pictorial CueingPictorial Cueing

Pictorial/Visual CueingPictorial/Visual Cueing• When can we stop using cueing?When can we stop using cueing?

• When can we stop using pictures?When can we stop using pictures?

Sample…..Sample…..

Communicating a Communicating a TransitionTransition

• Routine and StructureRoutine and Structure• Pictures on hand (wall, wallet, desk)Pictures on hand (wall, wallet, desk)• A GestureA Gesture• Marking on floorsMarking on floors• Visual clockVisual clock• Watch alarmWatch alarm• Other concrete objectOther concrete object

Sensory Integration DysfunctionSensory Integration Dysfunction

Individuals with SID have difficulty processing and Individuals with SID have difficulty processing and interpreting sensory information resulting in over or interpreting sensory information resulting in over or

under-stimulation and behaviours.under-stimulation and behaviours.

DefensivenessDefensiveness::

Includes impulsivity, self injury/aggression, avoid Includes impulsivity, self injury/aggression, avoid contact, picky eater, wears same or inside out contact, picky eater, wears same or inside out clothing, dislikes face washing, hair brushing etc.clothing, dislikes face washing, hair brushing etc.

ModulationModulation::

Includes distractibility, activity level extremes, difficulty Includes distractibility, activity level extremes, difficulty with transitions and low tolerance levelswith transitions and low tolerance levels

Sensory Integration Dysfunction (cont.)Sensory Integration Dysfunction (cont.)RegistrationRegistration::

Includes acute awareness of Includes acute awareness of noise/lights/sound/smells, lowered awareness of noise/lights/sound/smells, lowered awareness of pain and temperature, tip toe walking, poor body pain and temperature, tip toe walking, poor body awarenessawarenessIntegrationIntegration::

Includes hand preference delayed, poor eye-Includes hand preference delayed, poor eye-hand co-ordination and problems with motor hand co-ordination and problems with motor planning (may have apraxia)planning (may have apraxia)

**OT identification is vitally important as often behaviours **OT identification is vitally important as often behaviours are seen in all 4 areas with children affectedare seen in all 4 areas with children affected

Sensory Integration DysfunctionSensory Integration DysfunctionBehaviours resulting from SID should cue us to Behaviours resulting from SID should cue us to

determine the cause for behaviours rather than determine the cause for behaviours rather than targeting the behaviour itself.targeting the behaviour itself.

To reduce the effects of SID it is important to To reduce the effects of SID it is important to Modify the Environment. Modify the Environment. This will;This will;

-Reduce Over Stimulation-Reduce Over Stimulation-Increase ability to attend-Increase ability to attend-Increase prediction and ease of transition with -Increase prediction and ease of transition with

posted schedulesposted schedules-Increase ability to self-regulate with boundaries -Increase ability to self-regulate with boundaries

identified and prepared ‘comfy corners’identified and prepared ‘comfy corners’

Possible Environmental Possible Environmental ModificationsModifications

• Pale/ soft coloursPale/ soft colours• Bookshelves turned so all information is Bookshelves turned so all information is

not ‘in your face’not ‘in your face’• Limit number of picturesLimit number of pictures• Reduce smells/ sounds in the environment Reduce smells/ sounds in the environment

(tennis balls on chair legs)(tennis balls on chair legs)• Minimalist environment-less knick-knacks, Minimalist environment-less knick-knacks,

less furniture, less choicesless furniture, less choices

**When unsure what will help…ASK!**When unsure what will help…ASK!

Think About His/Her Home Think About His/Her Home and Other Environmentsand Other Environments

• Seating-exercise ball, rocking chair, bean Seating-exercise ball, rocking chair, bean bag chairbag chair

• Lighting-go natural, watch the glare, lava Lighting-go natural, watch the glare, lava lampslamps

• Visual Stimulation-de-clutter, muted coloursVisual Stimulation-de-clutter, muted colours• Calming tools-fidget toys, lap blankets, Calming tools-fidget toys, lap blankets,

bubble wrap, weighted backpack.bubble wrap, weighted backpack.• Organizing-big calendar, gumOrganizing-big calendar, gum

Comfy Corner/Quiet AreaComfy Corner/Quiet Area

What is it?What is it?A space that has objects to decrease the feeling of A space that has objects to decrease the feeling of

being overwhelmed or over-stimulatedbeing overwhelmed or over-stimulated

Why is it Important?Why is it Important?The person affected may not be able to vocalize The person affected may not be able to vocalize

the feeling of getting over- stimulated and the feeling of getting over- stimulated and suddenly there is a behaviour. They need to suddenly there is a behaviour. They need to learn what activities calm them and practice learn what activities calm them and practice them to develop life long skills in self monitoring them to develop life long skills in self monitoring and self regulationand self regulation

Comfy Corner IdeasComfy Corner Ideas

Reading cabin made out of washing Reading cabin made out of washing machine boxmachine box

A closetA closet

A tentA tent

Tarp leanTarp lean

Bookcase without shelves secured to the Bookcase without shelves secured to the wallwall

Sunglasses, headphones and a hoodieSunglasses, headphones and a hoodie

Sensory DietSensory DietWhat is it?What is it?• A balance of sensory feedback activitiesA balance of sensory feedback activities• Includes a combination of alerting, organizing and Includes a combination of alerting, organizing and

calming activitiescalming activities

Why?Why?• Affected individuals often can’t feel when they are getting Affected individuals often can’t feel when they are getting

wound up or lethargic or just right.wound up or lethargic or just right.• Teaches them how to recognize where their engines are Teaches them how to recognize where their engines are

at and how to keep feeling just right.at and how to keep feeling just right.

When?When?• Often throughout the day (consider time of day- after Often throughout the day (consider time of day- after

school, before test or other stressful activity)school, before test or other stressful activity)• Eventually, they will ask for it (keep items on hand when Eventually, they will ask for it (keep items on hand when

leaving home)leaving home)

Sensory Diet IdeasSensory Diet Ideas

AlertingAlerting• Crunching dry cereal, popcorn, chips, crackers, Crunching dry cereal, popcorn, chips, crackers,

nuts, pretzels, etc.nuts, pretzels, etc.• Taking a showerTaking a shower

OrganizingOrganizing• Chewing on gum, granola bar, bread crusts, Chewing on gum, granola bar, bread crusts,

bagels, licorice, dried fruit, etc.bagels, licorice, dried fruit, etc.• Pushing or pulling heavy loadsPushing or pulling heavy loads

Sensory Diet IdeasSensory Diet IdeasCalmingCalming• Sucking on a hard candy, frozen fruit Sucking on a hard candy, frozen fruit

barbar• Pushing against walls with hands, Pushing against walls with hands,

shoulders, back, butt, headshoulders, back, butt, head• Back rubbingBack rubbing• Taking a bath.Taking a bath.

Sensory IdeasSensory Ideas• Adults may be more subtle but still in need Adults may be more subtle but still in need

of sensory integration. of sensory integration. • A firm hand on shoulder with medium A firm hand on shoulder with medium

pressurepressure• Need to go to a quiet place to thinkNeed to go to a quiet place to think• Needs many smokes to calm downNeeds many smokes to calm down• Needs sun glasses while in the carNeeds sun glasses while in the car• Loves to push, pull, lift heavy loadsLoves to push, pull, lift heavy loads• Likes to wear heavy work coat and hatLikes to wear heavy work coat and hat

• Let adults guide you to what they needLet adults guide you to what they need

A Focus on Collaborative ServicesA Focus on Collaborative Services

FASD is complex and often requires a variety of FASD is complex and often requires a variety of different support servicesdifferent support services““Agencies working together synergistically tend Agencies working together synergistically tend to increase the effectiveness of services to increase the effectiveness of services provided to clients with FASD” provided to clients with FASD” Dubovsky, 2007Dubovsky, 2007

Case managers can survey all service provider Case managers can survey all service provider supports, coordinate the services, arrange for supports, coordinate the services, arrange for collaborative planning and the modification of collaborative planning and the modification of supports through educationsupports through education

Life Long Interdependent Life Long Interdependent

Support Support

Brain impairment is life long.Brain impairment is life long.There is consensus among experts that There is consensus among experts that

individuals with FASD are unable to stay individuals with FASD are unable to stay organized or focused and are easily organized or focused and are easily influenced by others. There is a limited influenced by others. There is a limited capacity to exercise good judgment, capacity to exercise good judgment, anticipate consequences and stay safe. anticipate consequences and stay safe.

Therefore, they will need long term external Therefore, they will need long term external structure, support and supervision- an structure, support and supervision- an external brain or brainsexternal brain or brains

Dealing with Dealing with ResistanceResistance

~~

Building the Relationship Building the Relationship Letting it be their ideaLetting it be their idea

“Maneuvering” for Success“Maneuvering” for Success

Resistive Behaviour Has Many Resistive Behaviour Has Many RootsRoots

• ““Problems translating verbal directions Problems translating verbal directions into action” into action” Allan Mountford Allan Mountford “I’d rather look bad than stupid”“I’d rather look bad than stupid”

• Overly stimulated Overly stimulated “I can’t take it anymore”“I can’t take it anymore”

• Unresolved grief and loss issue Unresolved grief and loss issue related to time of year related to time of year “My birth mother gave “My birth mother gave

me up on my birthday”me up on my birthday” Bill Dubovsky Bill Dubovsky

• Patterned behaviour with authority Patterned behaviour with authority (sarcasm) (sarcasm) tit for tat constantlytit for tat constantly

• Negative Blueprint Negative Blueprint “I’m always in survival mode “I’m always in survival mode even when you show me you care about me”even when you show me you care about me”

Overcoming Resistive Overcoming Resistive Behaviour by Letting It Be Behaviour by Letting It Be

Their IdeaTheir Idea ~ Nathon Ory www.fasdconnections.ca~ Nathon Ory www.fasdconnections.ca

• Remember that normal teen issues are: Remember that normal teen issues are:

a. feel in control b. feel independent from authoritya. feel in control b. feel independent from authority

• Goal: Give the person the idea of what he or she Goal: Give the person the idea of what he or she would actually would actually wishwish to do to do

• 11st:st: Get the idea in their mind Get the idea in their mind • Create “accidents” that will cue the person to do the Create “accidents” that will cue the person to do the

desired behaviourdesired behaviour

• Then: Agree with them by going in their direction.Then: Agree with them by going in their direction.

Maneuvering the Maneuvering the Environment for SuccessEnvironment for Success

Creating an optimal environment for compliance, Creating an optimal environment for compliance, self-confidence and success.self-confidence and success.

Do: Do: What you are comfortable withWhat you are comfortable with What it takes to get others on boardWhat it takes to get others on board Have one lead personHave one lead person

Don’t:Don’t:Let others convince you that the truth is bestLet others convince you that the truth is bestLet others convince you that she has to know Let others convince you that she has to know everythingeverything

Maneuvering the Maneuvering the Environment for Success - Environment for Success -

ExamplesExamplesSetting up his first apartment and/or jobSetting up his first apartment and/or job

• Check it out first, have her drop by spur of the Check it out first, have her drop by spur of the moment.moment.

• Make safety issues part of the lease/contract.Make safety issues part of the lease/contract.

• Get others saying the same thing (bus drivers, Get others saying the same thing (bus drivers, cleaning staff, landlords, etc.)cleaning staff, landlords, etc.)

• Let them think… “Yes, of course you will….”Let them think… “Yes, of course you will….”

• Remember it’s like you are dealing with a youth Remember it’s like you are dealing with a youth with Alzheimer's with Alzheimer's

TimeTime

• Visual timer, ticking timer or time timerVisual timer, ticking timer or time timer

• Be careful when you say 2 o’clock. It could Be careful when you say 2 o’clock. It could mean 2:01 to 2:59mean 2:01 to 2:59

• Use charts to link time and activities I.e. clocks, Use charts to link time and activities I.e. clocks, words, activity (bathroom chart)words, activity (bathroom chart)

• Give adults in SIL a watch that can be Give adults in SIL a watch that can be programmed to go off at curfewprogrammed to go off at curfew

• Gadgets that have hourly chimes or pill Gadgets that have hourly chimes or pill containers that can be set for up to 5 alarms containers that can be set for up to 5 alarms (Circuit City)(Circuit City)

MoneyMoney• Teach money association to objectsTeach money association to objects

• Point out good spending decisionsPoint out good spending decisions

• Create a learning savings in class and keep track on a white Create a learning savings in class and keep track on a white board, where appropriate board, where appropriate

• Before going in to the store, talk about what’s going to Before going in to the store, talk about what’s going to happen, make a list and stick to it!happen, make a list and stick to it!

• Stay on top of important purchases with care givers. If the Stay on top of important purchases with care givers. If the buying day is coming, keep reminding her of the expectation.buying day is coming, keep reminding her of the expectation.

• Always give a ticket rather than moneyAlways give a ticket rather than money

• Never give a credit card or gas card-make up a reason why Never give a credit card or gas card-make up a reason why you can’t have one eitheryou can’t have one either

• Own up to your mistakes. Think aloud.Own up to your mistakes. Think aloud.• Get a Power of AttorneyGet a Power of Attorney

Life SkillsLife Skills

• Make one day a week cleaning Make one day a week cleaning

day and don’t change it!day and don’t change it!

• Have instructional pictures on machinesHave instructional pictures on machines

• Make a shopping list and go at low timesMake a shopping list and go at low times

• Buy food mixes that have picturesBuy food mixes that have pictures

• Use the microwave when ever possibleUse the microwave when ever possible

• Pictures or words for all shelving and cupboardsPictures or words for all shelving and cupboards

Self Care/HygieneSelf Care/Hygiene

• Create Bathroom charts with pictures of clocks Create Bathroom charts with pictures of clocks and matched activity for morning routinesand matched activity for morning routines

• Practice shaving with a razor, putting on a Practice shaving with a razor, putting on a condomcondom

• Encourage practicing for feminine hygieneEncourage practicing for feminine hygiene• Use egg timer for teeth brushingUse egg timer for teeth brushing• Teach/model how to use soap, shampoo, Teach/model how to use soap, shampoo,

toothpaste- don’t assume they know how. Check toothpaste- don’t assume they know how. Check regularly to see if they have forgottenregularly to see if they have forgotten

RagesRages• Poor emotional control 0-100 in 3 secondsPoor emotional control 0-100 in 3 seconds• Frequently does not understand social cues Frequently does not understand social cues

until it is too lateuntil it is too late• Unable to verbalize the issue in the momentUnable to verbalize the issue in the moment----------------------------------------------------------------------------------------------------------------------• Prevent it. Low stimulation, lots of breaksPrevent it. Low stimulation, lots of breaks• Be gentle and direct when it is escalatingBe gentle and direct when it is escalating• Coach others not to engage or push back Coach others not to engage or push back

during a rageduring a rage• When it is over make apologies and move onWhen it is over make apologies and move on• Later review calming strategies for next time.Later review calming strategies for next time.

ConfabulationConfabulation• If I think it, it must be trueIf I think it, it must be true• I hope this is what happenedI hope this is what happened• I don’t want to get into trouble so…I don’t want to get into trouble so…• Perception is complicated by long-term memory Perception is complicated by long-term memory

problemsproblems• He must persist in the story no matter whatHe must persist in the story no matter what----------------------------------------------------------------------------------------------------------------------• Do not confront a minor lie (exaggeration)Do not confront a minor lie (exaggeration)• Be gentle but firm. “I am mandated to call___ Be gentle but firm. “I am mandated to call___

whenever there is confusion about and event. whenever there is confusion about and event. We need to get this issue cleared up”. We need to get this issue cleared up”.

• Teach the moral lesson much later- no Teach the moral lesson much later- no punishmentpunishment

StealingStealing• If no one is around it, it is not owned by anyoneIf no one is around it, it is not owned by anyone• Finders KeepersFinders Keepers• I see other people doing thisI see other people doing this• I NEED this ___ to surviveI NEED this ___ to survive

----------------------------------------------------------------------------------------------------------------------• Prevent it. Label all her thingsPrevent it. Label all her things• Ask “Do you need to show me your pockets?”Ask “Do you need to show me your pockets?”• Have her dump out her backpackHave her dump out her backpack• Gently point out what is not hersGently point out what is not hers• Give back immediatelyGive back immediately• Give the lesson later- not about punishmentGive the lesson later- not about punishment

AccommodationsAccommodations

1.1. FASD is an invisible physical disabilityFASD is an invisible physical disability2.2. Brain structure and function is changedBrain structure and function is changed3.3. Behaviours are symptomsBehaviours are symptoms4.4. Trying harder to change behaviours makes Trying harder to change behaviours makes

things worsethings worse5.5. Recognizing the disability and providing Recognizing the disability and providing

accommodations prevents problemsaccommodations prevents problems6.6. This is what we do with people with visible This is what we do with people with visible

disabilitiesdisabilities7.7. It worksIt works

The Southern Network of Specialized The Southern Network of Specialized CareCare

Purpose: To promote and enhance services for individuals with Purpose: To promote and enhance services for individuals with developmental disabilities who need specialized care for co-developmental disabilities who need specialized care for co-existing mental health issues and/or significant behaviours existing mental health issues and/or significant behaviours (Dual Diagnosis)(Dual Diagnosis)

1.1. Develop & Promote Relationships Across All SectorsDevelop & Promote Relationships Across All Sectors2.2. Develop Specialized Clinical Skills & ServicesDevelop Specialized Clinical Skills & Services3.3. EducationEducation4.4. ResearchResearch5.5. Recruitment & RetentionRecruitment & Retention6.6. Data – Gap IdentificationData – Gap Identification7.7. Unified Community VoiceUnified Community Voice

For more information contact Nancy Hall at For more information contact Nancy Hall at nhall@bethesdaservices.comnhall@bethesdaservices.com or 905-684-6918 X312 or 905-684-6918 X312

ResourcesResources• Edmonton and Area Fetal Alcohol Network. (2004). Edmonton and Area Fetal Alcohol Network. (2004).

FASD strategies not solutions.FASD strategies not solutions. Published by The Published by The Government of Alberta Children’s Services. Government of Alberta Children’s Services. www.region6fasd.cawww.region6fasd.ca

• Graefe, Sara. (2006). Graefe, Sara. (2006). Living with FASD: A guide for Living with FASD: A guide for parentsparents. Vancouver: Groundwork Press.. Vancouver: Groundwork Press.

• Kranowitz, Carol. (1998). Kranowitz, Carol. (1998). The out-of-sync child: The out-of-sync child: Recognizing and coping with sensory integration Recognizing and coping with sensory integration disorderdisorder. New York: Skylight Press.. New York: Skylight Press.

• Malbin, Diane. (2002). Malbin, Diane. (2002). Trying differently rather than Trying differently rather than harder. harder. FASCETS, Portland, Oregon.FASCETS, Portland, Oregon.

Resources Resources (cont.)(cont.)

• Streissguth, Ann. (1997). Streissguth, Ann. (1997). Fetal alcohol Fetal alcohol syndrome: A guide for parents and families.syndrome: A guide for parents and families. Baltimore: Brookes Publishing.Baltimore: Brookes Publishing.

• Streissguth, A., & Kanter, J. (1997). Streissguth, A., & Kanter, J. (1997). The The challenge of fetal alcohol syndrome: Overcoming challenge of fetal alcohol syndrome: Overcoming secondary disabilities. secondary disabilities. Seattle, WA: University of Seattle, WA: University of Washington Press.Washington Press.

• Trudeau, Debbie (Ed.). Fetal Alcohol Syndrome Trudeau, Debbie (Ed.). Fetal Alcohol Syndrome Society Yukon. (2002). Society Yukon. (2002). Trying differently. A guide Trying differently. A guide for daily living and working with FAS and other for daily living and working with FAS and other brain differencesbrain differences. 2nd Edition.. 2nd Edition.

Resources recommended by Ontario Resources recommended by Ontario Service ProvidersService Providers

• "Once Upon a Time: Therapeutic Stories that Teach and Heal" and "Once Upon a Time: Therapeutic Stories that Teach and Heal" and "Once Upon a Time: Therapeutic Stories to Heal Abused Children "Once Upon a Time: Therapeutic Stories to Heal Abused Children (revised edition) by Nancy Davis PhD. (revised edition) by Nancy Davis PhD. Saskatchewan FASD Tip Sheets Saskatchewan FASD Tip Sheets www/skfasnetwork.cawww/skfasnetwork.ca

• http://www.skfasnetwork.ca/Network%20Resources%20&%20Materials.http://www.skfasnetwork.ca/Network%20Resources%20&%20Materials.htmlhtml

• http://www.come-over.to/FAS/faslinks.htm Best FASD Siteshttp://www.come-over.to/FAS/faslinks.htm Best FASD Sites

• Fetal Alcohol Spectrum Disorder, by Toronto FASD Coordinating Fetal Alcohol Spectrum Disorder, by Toronto FASD Coordinating Network 2008Network 2008

• http://www.torontocas.ca/wp-content/uploads/2008/09/FASD.pdfhttp://www.torontocas.ca/wp-content/uploads/2008/09/FASD.pdf

• Strategies Parents find Helpful in Raising Children Living with FASD, Strategies Parents find Helpful in Raising Children Living with FASD, prepared by Czaee Rajwani. Toronto: St. Michael’s Fetal Alcohol prepared by Czaee Rajwani. Toronto: St. Michael’s Fetal Alcohol Spectrum Disorder Clinic, 2007.Spectrum Disorder Clinic, 2007.

Resources recommended by Ontario Resources recommended by Ontario

Service ProvidersService Providers (cont)(cont)• http://come-over.to/FAS/PDF/TorontoStrategiesParents.http://come-over.to/FAS/PDF/TorontoStrategiesParents.

pdfpdf

• FASlink Discussion Forum is an Internet mail list for FASlink Discussion Forum is an Internet mail list for individuals, families and professionals who work with individuals, families and professionals who work with FASD. This provides support and information 24/7. To FASD. This provides support and information 24/7. To join FASlink go to join FASlink go to http://http://listserv.rivernet.net/mailman/listinfo/faslistserv.rivernet.net/mailman/listinfo/fas-link-link

• Olderfas is a support group and discussion list Olderfas is a support group and discussion list for for parents onlyparents only. They welcome family . They welcome family members/parents/caregivers supporting for older teens members/parents/caregivers supporting for older teens with FASD who are transitioning to adulthood. Diagnosis with FASD who are transitioning to adulthood. Diagnosis is not required. To join go to is not required. To join go to http://http://groups.yahoo.com/group/Olderfasgroups.yahoo.com/group/Olderfas//

• Picture This: Life as a Parent of Children with FASD Picture This: Life as a Parent of Children with FASD (podcast): (podcast): http://http://citizenshift.orgcitizenshift.org/picture-this/picture-this