secondary disabilities and fetal alcohol spectrum disorder dr. brenda stade, rn st. michael’s...
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Secondary Disabilities and Secondary Disabilities and Fetal Alcohol Spectrum Fetal Alcohol Spectrum
DisorderDisorder
Dr. Brenda Stade, RN Dr. Brenda Stade, RN St. Michael’s Hospital, Toronto.St. Michael’s Hospital, Toronto.
Introduction: Introduction: Secondary DisabilitiesSecondary Disabilities
Often in the adolescent and adult with Often in the adolescent and adult with FASD secondary disabilities emergeFASD secondary disabilities emerge
Secondary disabilities are believed to Secondary disabilities are believed to result from complications of result from complications of undiagnosed or untreated primary undiagnosed or untreated primary disabilitiesdisabilities
Introduction:Introduction:Secondary DisabilitiesSecondary Disabilities
Mental health problemsMental health problems Disrupted school experiencesDisrupted school experiences Easily victimizedEasily victimized Trouble with the lawTrouble with the law ConfinementConfinement
Introduction:Introduction:Secondary Disabilities Secondary Disabilities
(cont.)(cont.)
Inappropriate sexual behaviour Inappropriate sexual behaviour Alcohol and drug problemsAlcohol and drug problems Needing dependent living Needing dependent living
situationssituations Problems with employmentProblems with employment
Secondary vs. Primary Secondary vs. Primary DisabilitiesDisabilities
Are they the Are they the same or are same or are
they different?they different?
Executive functions ofExecutive functions ofthe prefrontal cortexthe prefrontal cortex
working working memory memory
planning planning time time perception perception
internal internal ordering ordering
self-self-monitoring monitoring
regulation regulation of emotion of emotion
motivationmotivation
inhibitioninhibition
Secondary vs. Primary Secondary vs. Primary DisabilitiesDisabilities
Impulsive and uninhibitedImpulsive and uninhibited
Passive and withdrawn one minute, Passive and withdrawn one minute, switching to volatile temper tantrums the switching to volatile temper tantrums the nextnext
Unpredictable; may need 24 hour Unpredictable; may need 24 hour supervisionsupervision
Depression, Extreme AnxietyDepression, Extreme Anxiety
Secondary vs. Primary Secondary vs. Primary DisabilitiesDisabilities
Hyperactive in non-goal directed activityHyperactive in non-goal directed activity
Unable to stay focused on task: to follow Unable to stay focused on task: to follow rules, finish household chores, school rules, finish household chores, school assignments or keep commitmentsassignments or keep commitments
Genuine innocence and detached Genuine innocence and detached attitudeattitude
Secondary vs. Primary Secondary vs. Primary DisabilitiesDisabilities
Impulsive – sexually inappropriate, stealingImpulsive – sexually inappropriate, stealing
““Short-sighted” Short-sighted”
May expect immediate gratificationMay expect immediate gratification
Engaging and charismatic yet creative at Engaging and charismatic yet creative at re-framing reality.re-framing reality.
Impact of FASDImpact of FASD
Experience of Living with Experience of Living with
FASDFASD 10-year-old stated:10-year-old stated:
““Learning is hard. The teachers Learning is hard. The teachers don’t explain things (in a manner don’t explain things (in a manner that allows her to understand).”that allows her to understand).”
Experience of Living with Experience of Living with
FASDFASD 18-year-old stated:18-year-old stated:
““They (teachers, employers) They (teachers, employers) expected me to do things I expected me to do things I couldn’t. I have a hard time doing couldn’t. I have a hard time doing some things. Others (kids his age) some things. Others (kids his age) do things easier, get through work do things easier, get through work ….” ….”
Experience of Living with Experience of Living with
FASDFASD 21-year-old stated:21-year-old stated:
““It (FAS) really does effect quality It (FAS) really does effect quality of life. It affects, school working, of life. It affects, school working, friendships…. How does it affect friendships…. How does it affect me? Differently. I do things me? Differently. I do things differently…..My brain is rewired differently…..My brain is rewired differently (than others).”differently (than others).”
Experience of Living with Experience of Living with
FASDFASD 8-year-old stated: 8-year-old stated:
““(It’s) hard, hard to keep out of (It’s) hard, hard to keep out of trouble, and I am not that smart. trouble, and I am not that smart. Everybody makes fun of me.”Everybody makes fun of me.”
Hope for Positive OutcomesHope for Positive Outcomes
21 year old stated: 21 year old stated:
““The disability happened, it’s a The disability happened, it’s a disadvantage. It is not a disadvantage. It is not a disability. I don’t like to use it disability. I don’t like to use it as an excuse (for not as an excuse (for not participating in life)”. participating in life)”.
Hope for Positive OutcomesHope for Positive Outcomes
19 year old stated: 19 year old stated:
““I don’t have the I don’t have the bestbest brain. … brain. … But it still works”. But it still works”.
Protective FactorsProtective Factors
Being raised in a nurturing stable environment
Diagnosis before age 6
Having a diagnosis of FAS rather than ARND
(Streissguth et al., 2004)(Streissguth et al., 2004)
Interventions:Interventions:DiagnosisDiagnosis
Why Diagnose?Why Diagnose?
New understanding leads to new New understanding leads to new strategies at home and other strategies at home and other environmentsenvironments
Opens doors for servicesOpens doors for services
Better medical management.Better medical management.
Interventions:Interventions:PsychosocialPsychosocial
Interventions: Interventions: Psycho-socialPsycho-social
Mental Health Programs – behavioural, Mental Health Programs – behavioural, social skill developmentsocial skill development
Counselling: family doctors, social Counselling: family doctors, social workers, nurses, adolescent workers, nurses, adolescent paediatricians, psychiatrists, paediatricians, psychiatrists, psychologistspsychologists
Support Groups Support Groups
Interventions: Interventions: PsychosocialPsychosocial
Activities that foster confidence and social development
? Medication
Interventions:Interventions:LearningLearning
Interventions: Interventions: Facilitate LearningFacilitate Learning
Psychological Assessment Psychological Assessment
Modification of School/Job Training Modification of School/Job Training Programs:Programs: Small Size of 8 to 10Small Size of 8 to 10 Individual Educational PlanIndividual Educational Plan Resource Teacher Resource Teacher Job CoachJob Coach
Six Strategies for Teaching Six Strategies for Teaching Individuals with FASDIndividuals with FASD
1.1. Structure and Structure and routine is criticalroutine is critical
2. 2. Less talk and Less talk and more multi-more multi-sensory learning sensory learning opportunitiesopportunities
3.3. Be concrete and Be concrete and don’t assume don’t assume anything. Teach anything. Teach and re-teachand re-teach
Six Strategies for Teaching Six Strategies for Teaching Individuals with FASDIndividuals with FASD
4.4. Facilitate language. Use specialists Facilitate language. Use specialists to help with language development.to help with language development.
5.5. Gross motor programming is Gross motor programming is important These students need to important These students need to move.move.
6.6. Reduce stimulation, use visual cues.Reduce stimulation, use visual cues.
Interventions: Interventions: Facilitate Job SuccessFacilitate Job Success
Work environment that is accepting of areas of Work environment that is accepting of areas of weakness not just areas of strengthweakness not just areas of strength
StructureStructure
SupervisionSupervision
Modified Work Hours Modified Work Hours
Interventions: Interventions: Facilitate IndependenceFacilitate Independence
Identify housing that matches the Identify housing that matches the individuals needs individuals needs
Economic support and protection Economic support and protection The “External Brain”The “External Brain”
A community that caresA community that cares
Interventions:Interventions:Strategies for SuccessStrategies for Success
Strategies for SuccessStrategies for Success
Observe patterns of behaviours Observe patterns of behaviours Identify strengths, skills and interestsIdentify strengths, skills and interests Reframe the interpretation of Reframe the interpretation of
behavioursbehaviours Provide structure rather than controlProvide structure rather than control Establish routines and consistencyEstablish routines and consistency
Strategies For SuccessStrategies For Success Build transitions into every routineBuild transitions into every routine Model behavioursModel behaviours Provide simple instructions or cuesProvide simple instructions or cues Identify behaviours which indicate the Identify behaviours which indicate the
accumulation of frustrationsaccumulation of frustrations Help develop skills for expressing feelingsHelp develop skills for expressing feelings
Strategies for SuccessStrategies for Success Provide specific support for social Provide specific support for social
skill developmentskill development Understand the various forms of Understand the various forms of
communicationscommunications Include as many sensory Include as many sensory
modalities as possible to modalities as possible to facilitate integration of facilitate integration of information and experienceinformation and experience
Strategies for SuccessStrategies for Success
Consider information processing abilities Consider information processing abilities
Reevaluate expectations and goals for Reevaluate expectations and goals for the individual: Clarify whose needs are the individual: Clarify whose needs are being met by the goalsbeing met by the goals
Clarify goals and values for education/job Clarify goals and values for education/job training and independencetraining and independence
Strategies for SuccessStrategies for Success
Advocate - Anticipate - Advocate - Anticipate - Co-ordinate – AcceptCo-ordinate – Accept
Integration of culturally relevant Integration of culturally relevant values and traditionsvalues and traditions
EnvironmentEnvironment