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1 Effective Practices for Supporting Individuals with Fetal Alcohol Spectrum Disorder (FASD) Presented by Nancy Hall on behalf ofThe Southern Network of Specialized Care
2 Presenter Information Currently, Facilitator for The Southern Network of Specialized CarePreviously, FASD Community Development Facilitator representing 29 service delivery agencies, doctors and parents working in the Hamilton, Burlington, Niagara and H/N communitiesWorked in social services for over 20 years as program manager supporting individuals with physical, developmental and mental health issuesSpecializing in behavioural consultation and interventionMember of the FASD Ontario Network of Expertise
3 FASD Ontario Network of Towards aProvincial StrategyAdvancing Effective Service Provider Practices in Fetal Alcohol Spectrum Disorder (FASD)2010Intervention and Support Working GroupThe information presented here is, primarily, the results of a research paper produced by the Support and Intervention Working Group of theFASD Ontario Network ofExpertise (FASD ONE)See to find this document, as well as documents dedicated to Respite Needs and Education.
4 Advancing Effective Service Provider Practices in Ontario Goals:To determine what practices are most effective with individuals affected by FASD- resulted in a review of existing resources/literatureTo determine if service providers in Ontario are using these practices- survey of the parents/caregivers of children with FASD in Ontario
5 ResultsEight primary effective practices were identified as critical in the successful support of this population;-Emphasis on early diagnosis-Training and education in FASD-A paradigm shift to a positive, strength-based approach-Structure, routine and supervision-Effective communication approaches-Awareness of and supports for Sensory Processing Disorders-Collaborative services-The need for life-long interdependent supports30 service providers in Ontario were identified as effective and all 30 confirmed their consistent support and/or use of these eight practices
6 AcknowledgementsStephanie Jones, co-author of the booklet “Strategies Not Solutions”. Stephanie has acted as a case consultant and has been training professionals in both FASD and successful intervention techniques since 2002Ann Streissguth, 1997Dan Dubovsky from SAMHSA FASD Center for Excellence, Rockville MDNathan Ory, M.A.Diane Malbin, MSW from FASCETS, Portland, Oregon
8 Fetal Alcohol Spectrum Disorder (FASD) FASD is an umbrella term referring to a range of disabilities resulting from prenatal exposure to alcohol. This includes:FAS- Fetal Alcohol Syndrome- all three facial features, neurological damagepFAS- Partial Fetal Alcohol Syndrome- 2 out of 3 features, neurological damageARND- Alcohol Related Neurodevelopmental Disorder- no facial features, neurological damage
9 FAS – only the tip of the iceberg FAS & pFAS> Collectively representapprox. 15% of those affectedARND>Represents 85+% of those affected- most will go unrecognizedCurrent research tells us that at least 1 out of every 100 people is affected by prenatal exposure to alcohol- this is permanent brain damage
10 FASD: Impact on the Individual “Of all the substances of abuse (including marijuana, cocaine and heroin), alcohol produces, by far, the most serious neurobehavioural effects to the fetus”-IOM Report to Congress, 1996FASD is the leading cause of disability and with 10% also having a developmental delay, it is also the leading cause of developmental delay.
11 FASD Behavioural Profile- Reflects Poor Executive and Adaptive Functioning Inconsistent performancePoor regulation of emotion- acts immaturePoor memory-erratic (esp. short-term)Lack of abstract reasoningFailure to predictDo not understand cause and effectFails to generalizeTendency to be oppositional or boastful with figures of authorityPoor self-monitoringPoor sense of selfStrong verbal expressionPoor receptive languageShort attention span-erratic/impulsiveDifficulty with time conceptsDifficulty with transitionsAppears unmotivated/ lazy (cannot ‘walk the talk’) or manipulativeSensory sensitivities very prevalent- watch the environment
12 Secondary Disabilities Mental health problems-*research may redefine this as a primary disability with 95% affected also having MH problemsDisrupted school experiences (68%)Confined in prison/treatment centre (55%)Trouble with the law (68%)Inappropriate sexual behaviour (52%)Alcohol and drug problems (30-35%)Problems with employment (70%) and living independently (82%)
14 Diagnosis Diagnosis is critical for Effective Intervention Research indicates that prognosis is best with diagnosis before the age of sixAccurate diagnosis assists caregivers to understand the disability and adjust intervention strategies- Typical behavioural supports tend to be ineffectiveAppropriate support and understanding acts as a protective factor against secondary disabilities
15 Diagnosis (cont.) To reduce unrealistic expectations-look more capable Allows for life long planning for supportsThis information may result in the prevention of other affected children (education, monitoring and support for mom)Using a pre-screening tool to identify those potentially affected or “thinking FASD first…” in the absence of diagnostic services will reduce the occurrences of damage to the child through inappropriate interventionsEarly recognition allows for better outcomes for both the individual and their family
16 Oppositional Defiant Disorder Comparing FASD, ADHD and Oppositional Defiant Disorder Dan Dubovsky, 2008FASDADHDOppositional Defiant DisorderDo not complete tasks-may or may not take in informationcannot recall information when neededcannot remember what to do-takes in information-can recall information when needed-get distracted-choose not to do what they are toldProvide one direction at a timeLimit stimuli and provide cuesProvide positive sense of control; limits and consequences
17 Beliefs Dictate Interventions Behaviours are willful =PunishBehaviours are symptoms =Support*Education and Training in FASD is critical to this understanding!
18 Behaviors, Misconceptions and Accurate Interpretation BehavioursMisconceptionAccurate InterpretationNoncomplianceWillful misconduct, attention seeking, stubborn, everyone does this at timesDifficulty translating verbal direction into action, doesn’t understand, chronic memory problemsRepeatedly making the same mistakesWillful misconduct, manipulativeCannot link cause to effect, can’t see similarities, difficulty generalizingOften late or doesn’t attend appointments at allLazy, slow, willful misconduct, lots of people are lateCan’t understand the abstract concept of time, needs assistance organizing, needs ongoing support and reminding18
19 Behaviors Misconceptions and Accurate Interpretation BehavioursMisconceptionsAccurate InterpretationNot sitting still/fidgetingSeeking attention, bothering others, willful misconduct, normal for this ageNeurologically based need to move while learning/listening, sensory overloadPoor social judgmentPoor parenting, willful misconduct, neglected/abusive childhoodUnable to interpret social cues from peers/others, can’t control impulsesOverly physicalWillful misconduct, deviancyHyper or hypo-sensitive to touch & environment, can't understand social cues regarding boundaries19
20 Why Education and Training? There is a prevalent lack of knowledge of FASD and its effects in both the general public and the medical fieldIn addition to the problem of no diagnosis we see high rates of misdiagnosisDiagnosis is not enough…we must then understand the affects of FASD and what supports will result in success- typical behavioural approaches are not usually successfulEducation of professionals is equally important to the education of family and of the individual themselves
21 Paradigm Shifts- Changing understanding From Seeing Person as:-Won’t-Bad-Lazy-Lies-Doesn’t Try-Mean-Doesn’t Care, shutsdown-IS a problem-Acts ImmatureTo understanding Person as:-Can’t-Frustrated, challenged-Tried Hard-Confabulates/ fills in-Exhausted/ can’t start-Defensive, hurt, abused-Cannot show feelings-HAS a problem-Is dysmature
22 Changing What we Do From: -Punishing -High Expectations -Failure -Assuming-Punishing-High Expectations-Failure-Changing People-Trying HarderTo:-Observing-Preventing Problems-Appropriate Expectations-Success-Changing Environments-Trying Differently
23 Paradigm Shift We are changing what WE do, not the person UNABLE not unwilling to understand consequences“We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed.”Dubovsky 2000We are changing whatWE do, not the person“If they could get it for themselves,they wouldn’t need us!”Dubovsky 2007
24 The Big Picture- Paradigm Shift We know they aren’t doing it on purpose and they cannot understand consequences, so now what??Get Curious: When you seek to change the individual, ask yourself what is it that you also need to change.Notice your own reactionsCatch yourself assumingObserve disruptions in routineLook at the environment
25 Think Can’t not Won’t- How Do We Adapt? FASD looks like…What we want…How we feel about it…What we do… our reactionTheResultsRe-frame and PreventRigid, perseverates, difficulty stopping/changing activitiesStop when told, no resistanceHe/she is controlling oppositional and bossyInterrupt, assert control, require transitionResistance,Anger,BIG TantrumAdjust workload to achieve closure, give timeSensory issues- over stimulated, over whelmed, distractablePay attention, Sit still, ignore distractionsHe/she is not trying, undisciplinedoff task, ADD, Irritated, AngerPunish, more work, medicate, no recessAgitation, anger, avoidance, anxiety, tantrumsEvaluate the environment, reduce stimulation, provide breaks
26 Start with Seeing Success Attendance is successNot having secondary disabilities is successHaving a good day is more important than completing all assignmentsLearning how to self monitor and self regulate is just as important as learning mathGiving the words is not giving the answersIf he is successful in 1 class than why push for more?
27 Positive Strength Based Approach Assessment includes determining strengths and weaknessesIncludes;-what they do well?-what do they like?-what are their best qualities?-what do you like about them?A good program should have a ‘no eject’ policy because of brain based behaviour
28 Using a Strength Based Approach Effective programs understand behaviors are the result of permanent brain damage- it is not see as willfulA positive approach;- moves from punishment to understanding and changing the environment or expectations-moves from trying to change symptoms to changing our reactions-has no negative carry-over from one day to the next-the inventory of strengths includes family and service provider strengths to determine strong supports-positive/strength based activities are never used as a treat or punishment resulting from good or bad behaviour
29 Strengths of People with FASD trustingdon't give up easilycaringfriendlyartisticmusicalgreat speakerscreativeworking with hands
30 “Find something that the person does well (that is safe and legal) and arrange to have the person do that regardless of behaviour”
31 A Positive Outcome Means Talking about FASD Talk about FASD – no shameFASD is a disabilityThe ability to express their challenges and strengths will help them advocate for themselves in adulthood
32 Structure Supervision Support Supervision is an absolute MUST. All the time- type/intensity dependent on functional level.Structure keeps the person anchored in time and reduces anxiety.Helps them think less-anticipate/predict moreMeans doing the same thing, in the same order, in the same manner (with the same cues and prompts) and with the same expectations. These are the rules.Make a plan of things he is good at/enjoys- for activities when there is none
33 Structure Supervision Support Support means modeling, cueing, prompting and getting everyone on board with it.What is modeling?-Think Aloud-give key self talk phrases-Follow through-Write out pro / con lists-Make the connection again later when they are ready
34 Support (continued)Focus on what they can do; ensure expectations are within their capacity. -If they fail to follow through on a task, shows signs of anxiety or frustration, some form of accommodation is required -Consider inconsistent performance on tasksStep in early to prevent escalation of problems -Poor problem solving skills means they have limited capacity to adapt their responses -Brain impairment means they cannot self-correct and will repeat mistakes (perseverate)
36 If there is Going to be a Change “I have an announcement, there is going to be a change. Sometimes that happens but I’m not going to have a big hairy fit about it.”Show them what the expected behaviour looks like.If time, change the calendar, write a post-it note. Organize for them.
37 Repeat after me: Prevention (Overall) lock up your purse, cupboards and fridge. Colour code her things. Sew up/rip up pockets. Ask “Should we search your pockets?”Be their external brain. If you know something bad is going to happen if…. Don’t let it happen.Be ready. A birthday + long weekend + sharing your attention = disaster
38 Memory Strategies Keep your routine!!! “Tacos on Tuesdays” “House cleaning on Saturdays”Colour-code to a calendar or day timerSchedule in lockerPost lists, charts, pictures- visual cuesReview, reteach, remind“Give gentle reminders rather than nags and then watch him like a hawk” faslink
39 Communication Supports Individuals with FASD tend to be very verbal with little content.Receptive language is more impaired than expressive. This presents as a larger problem when we consider that successful outcomes are reliant on receptive language in many situations. Including;-parenting techniques-education-justice system and-treatment (motivational interviewing, cognitive behavioural therapy, group therapy and AA/NA groups) Dubovsky, 2008.Consider the total communication approach. Pairing words with pictures, photos, gestures and signs.
40 Communication Supports Match your language to that of the level of the person. Consider variations depending emotional state.Use eye contact and exact repetition10 words or less, simple and clearCome to the end of the thought and wait a few secondsAvoid giving instructions in places where you can’t control the environment (the mall)Body/facial expression exaggeratedState directions in positive terms (what they can do vs what they cannot do)Check for concrete understanding
41 Communication Supports (cont.) Refrain from the use of sarcasm and ensure individual has jokes explained to reduce misunderstanding and conflict-concreteAlways refer to persons in a group not ‘they’ or ‘them’- be concreteLink one task to another to establish sequences i.e. the bus comes after breakfastUse sign language if possibleBe careful with abstract words (‘get ready’) or generalize (‘watch’)
42 Abstract Language Why?, Wait, Watch, Listen Get ready, Clean up Join, Get in lineRespond, ChooseBe responsible/appropriateDo it later, WaitUse your words, Ask for helpWhat are you feeling?“When you’re done, take a cab home.”
43 Visual CuesVisual cues can be used to reduce the amount of verbal communication required. It can be used to communicate;Physical BoundariesRulesPersonal RoutinesSchedulesAnger Management PlansEtc.
45 Pictorial/Visual Cueing When can we stop using cueing?When can we stop using pictures?Sample…..
46 Communicating a Transition Routine and StructurePictures on hand (wall, wallet, desk)A GestureMarking on floorsVisual clockWatch alarmOther concrete object
47 Sensory Integration Dysfunction Individuals with SID have difficulty processing and interpreting sensory information resulting in over or under-stimulation and behaviours.Defensiveness:Includes impulsivity, self injury/aggression, avoid contact, picky eater, wears same or inside out clothing, dislikes face washing, hair brushing etc.Modulation:Includes distractibility, activity level extremes, difficulty with transitions and low tolerance levels
48 Sensory Integration Dysfunction (cont.) Registration:Includes acute awareness of noise/lights/sound/smells, lowered awareness of pain and temperature, tip toe walking, poor body awarenessIntegration:Includes hand preference delayed, poor eye-hand co-ordination and problems with motor planning (may have apraxia)**OT identification is vitally important as often behaviours are seen in all 4 areas with children affected
49 Sensory Integration Dysfunction Behaviours resulting from SID should cue us to determine the cause for behaviours rather than targeting the behaviour itself.To reduce the effects of SID it is important to Modify the Environment. This will;-Reduce Over Stimulation-Increase ability to attend-Increase prediction and ease of transition with posted schedules-Increase ability to self-regulate with boundaries identified and prepared ‘comfy corners’
50 Possible Environmental Modifications Pale/ soft coloursBookshelves turned so all information is not ‘in your face’Limit number of picturesReduce smells/ sounds in the environment (tennis balls on chair legs)Minimalist environment-less knick-knacks, less furniture, less choices**When unsure what will help…ASK!
51 Think About His/Her Home and Other Environments Seating-exercise ball, rocking chair, bean bag chairLighting-go natural, watch the glare, lava lampsVisual Stimulation-de-clutter, muted coloursCalming tools-fidget toys, lap blankets, bubble wrap, weighted backpack.Organizing-big calendar, gum
52 Comfy Corner/Quiet Area What is it?A space that has objects to decrease the feeling of being overwhelmed or over-stimulatedWhy is it Important?The person affected may not be able to vocalize the feeling of getting over- stimulated and suddenly there is a behaviour. They need to learn what activities calm them and practice them to develop life long skills in self monitoring and self regulation
53 Comfy Corner Ideas Reading cabin made out of washing machine box A closetA tentTarp leanBookcase without shelves secured to the wallSunglasses, headphones and a hoodie
57 Sensory Diet What is it? Why? When? A balance of sensory feedback activitiesIncludes a combination of alerting, organizing and calming activitiesWhy?Affected individuals often can’t feel when they are getting wound up or lethargic or just right.Teaches them how to recognize where their engines are at and how to keep feeling just right.When?Often throughout the day (consider time of day- after school, before test or other stressful activity)Eventually, they will ask for it (keep items on hand when leaving home)
58 Sensory Diet Ideas Alerting Crunching dry cereal, popcorn, chips, crackers, nuts, pretzels, etc.Taking a showerOrganizingChewing on gum, granola bar, bread crusts, bagels, licorice, dried fruit, etc.Pushing or pulling heavy loads
59 Sensory Diet Ideas Calming Sucking on a hard candy, frozen fruit bar Pushing against walls with hands, shoulders, back, butt, headBack rubbingTaking a bath.
60 Sensory IdeasAdults may be more subtle but still in need of sensory integration.A firm hand on shoulder with medium pressureNeed to go to a quiet place to thinkNeeds many smokes to calm downNeeds sun glasses while in the carLoves to push, pull, lift heavy loadsLikes to wear heavy work coat and hatLet adults guide you to what they need
61 A Focus on Collaborative Services FASD is complex and often requires a variety of different support services“Agencies working together synergistically tend to increase the effectiveness of services provided to clients with FASD” Dubovsky, 2007Case managers can survey all service provider supports, coordinate the services, arrange for collaborative planning and the modification of supports through education
62 Life Long Interdependent Support Brain impairment is life long.There is consensus among experts that individuals with FASD are unable to stay organized or focused and are easily influenced by others. There is a limited capacity to exercise good judgment, anticipate consequences and stay safe.Therefore, they will need long term external structure, support and supervision- an external brain or brains
63 Dealing with Resistance ~ Building the Relationship Letting it be their idea “Maneuvering” for Success
64 Resistive Behaviour Has Many Roots “Problems translating verbal directions into action” Allan Mountford “I’d rather look bad than stupid”Overly stimulated “I can’t take it anymore”Unresolved grief and loss issue related to time of year “My birth mother gave me up on my birthday” Bill DubovskyPatterned behaviour with authority (sarcasm) tit for tat constantlyNegative Blueprint “I’m always in survival mode even when you show me you care about me”
65 Overcoming Resistive Behaviour by Letting It Be Their Idea ~ Nathon Ory www.fasdconnections.ca Remember that normal teen issues are:a. feel in control b. feel independent from authorityGoal: Give the person the idea of what he or she would actually wish to do1st: Get the idea in their mindCreate “accidents” that will cue the person to do the desired behaviourThen: Agree with them by going in their direction.
66 Maneuvering the Environment for Success Creating an optimal environment for compliance, self-confidence and success.Do:What you are comfortable withWhat it takes to get others on boardHave one lead personDon’t:Let others convince you that the truth is bestLet others convince you that she has to know everything
67 Maneuvering the Environment for Success - Examples Setting up his first apartment and/or jobCheck it out first, have her drop by spur of the moment.Make safety issues part of the lease/contract.Get others saying the same thing (bus drivers, cleaning staff, landlords, etc.)Let them think… “Yes, of course you will….”Remember it’s like you are dealing with a youth with Alzheimer's
68 Time Visual timer, ticking timer or time timer Be careful when you say 2 o’clock. It could mean 2:01 to 2:59Use charts to link time and activities I.e. clocks, words, activity (bathroom chart)Give adults in SIL a watch that can be programmed to go off at curfewGadgets that have hourly chimes or pill containers that can be set for up to 5 alarms (Circuit City)
69 Money Teach money association to objects Point out good spending decisionsCreate a learning savings in class and keep track on a white board, where appropriateBefore going in to the store, talk about what’s going to happen, make a list and stick to it!Stay on top of important purchases with care givers. If the buying day is coming, keep reminding her of the expectation.Always give a ticket rather than moneyNever give a credit card or gas card-make up a reason why you can’t have one eitherOwn up to your mistakes. Think aloud.Get a Power of Attorney
70 Life Skills Make one day a week cleaning day and don’t change it! Have instructional pictures on machinesMake a shopping list and go at low timesBuy food mixes that have picturesUse the microwave when ever possiblePictures or words for all shelving and cupboards
71 Self Care/HygieneCreate Bathroom charts with pictures of clocks and matched activity for morning routinesPractice shaving with a razor, putting on a condomEncourage practicing for feminine hygieneUse egg timer for teeth brushingTeach/model how to use soap, shampoo, toothpaste- don’t assume they know how. Check regularly to see if they have forgotten
72 RagesPoor emotional control in 3 secondsFrequently does not understand social cues until it is too lateUnable to verbalize the issue in the momentPrevent it. Low stimulation, lots of breaksBe gentle and direct when it is escalatingCoach others not to engage or push back during a rageWhen it is over make apologies and move onLater review calming strategies for next time.
73 Confabulation If I think it, it must be true I hope this is what happenedI don’t want to get into trouble so…Perception is complicated by long-term memory problemsHe must persist in the story no matter whatDo not confront a minor lie (exaggeration)Be gentle but firm. “I am mandated to call___ whenever there is confusion about and event. We need to get this issue cleared up”.Teach the moral lesson much later- no punishment
74 Stealing If no one is around it, it is not owned by anyone Finders KeepersI see other people doing thisI NEED this ___ to survivePrevent it. Label all her thingsAsk “Do you need to show me your pockets?”Have her dump out her backpackGently point out what is not hersGive back immediatelyGive the lesson later- not about punishment
75 Accommodations FASD is an invisible physical disability Brain structure and function is changedBehaviours are symptomsTrying harder to change behaviours makes things worseRecognizing the disability and providing accommodations prevents problemsThis is what we do with people with visible disabilitiesIt works
76 The Southern Network of Specialized Care Purpose: To promote and enhance services for individuals with developmental disabilities who need specialized care for co-existing mental health issues and/or significant behaviours (Dual Diagnosis)Develop & Promote Relationships Across All SectorsDevelop Specialized Clinical Skills & ServicesEducationResearchRecruitment & RetentionData – Gap IdentificationUnified Community VoiceFor more information contact Nancy Hall at or X312
77 ResourcesEdmonton and Area Fetal Alcohol Network. (2004). FASD strategies not solutions. Published by The Government of Alberta Children’s Services.Graefe, Sara. (2006). Living with FASD: A guide for parents. Vancouver: Groundwork Press.Kranowitz, Carol. (1998). The out-of-sync child: Recognizing and coping with sensory integration disorder. New York: Skylight Press.Malbin, Diane. (2002). Trying differently rather than harder. FASCETS, Portland, Oregon.
78 Resources (cont.)Streissguth, Ann. (1997). Fetal alcohol syndrome: A guide for parents and families. Baltimore: Brookes Publishing.Streissguth, A., & Kanter, J. (1997). The challenge of fetal alcohol syndrome: Overcoming secondary disabilities. Seattle, WA: University of Washington Press.Trudeau, Debbie (Ed.). Fetal Alcohol Syndrome Society Yukon. (2002). Trying differently. A guide for daily living and working with FAS and other brain differences. 2nd Edition.
79 Resources recommended by Ontario Service Providers "Once Upon a Time: Therapeutic Stories that Teach and Heal" and "Once Upon a Time: Therapeutic Stories to Heal Abused Children (revised edition) by Nancy Davis PhD. Saskatchewan FASD Tip Sheets www/skfasnetwork.caBest FASD SitesFetal Alcohol Spectrum Disorder, by Toronto FASD Coordinating Network 2008Strategies Parents find Helpful in Raising Children Living with FASD, prepared by Czaee Rajwani. Toronto: St. Michael’s Fetal Alcohol Spectrum Disorder Clinic, 2007.
80 Resources recommended by Ontario Service Providers (cont) FASlink Discussion Forum is an Internet mail list for individuals, families and professionals who work with FASD. This provides support and information 24/7. To join FASlink go toOlderfas is a support group and discussion list for parents only. They welcome family members/parents/caregivers supporting for older teens with FASD who are transitioning to adulthood. Diagnosis is not required. To join go toPicture This: Life as a Parent of Children with FASD (podcast):