Presentation is loading. Please wait.

Presentation is loading. Please wait.

Effective Practices for Supporting Individuals with Fetal Alcohol Spectrum Disorder (FASD) Presented by Nancy Hall on behalf of The Southern Network of.

Similar presentations


Presentation on theme: "Effective Practices for Supporting Individuals with Fetal Alcohol Spectrum Disorder (FASD) Presented by Nancy Hall on behalf of The Southern Network of."— Presentation transcript:

1 Effective Practices for Supporting Individuals with Fetal Alcohol Spectrum Disorder (FASD) Presented by Nancy Hall on behalf of The Southern Network of Specialized Care

2 Presenter Information Currently, Facilitator for The Southern Network of Specialized Care Currently, Facilitator for The Southern Network of Specialized Care Previously, FASD Community Development Facilitator representing 29 service delivery agencies, doctors and parents working in the Hamilton, Burlington, Niagara and H/N communities Previously, FASD Community Development Facilitator representing 29 service delivery agencies, doctors and parents working in the Hamilton, Burlington, Niagara and H/N communities Worked in social services for over 20 years as program manager supporting individuals with physical, developmental and mental health issues Worked in social services for over 20 years as program manager supporting individuals with physical, developmental and mental health issues Specializing in behavioural consultation and intervention Specializing in behavioural consultation and intervention Member of the FASD Ontario Network of Expertise Member of the FASD Ontario Network of Expertise

3 The information presented here is, primarily, the results of a research paper produced by the Support and Intervention Working Group of the The information presented here is, primarily, the results of a research paper produced by the Support and Intervention Working Group of the FASD Ontario Network of Expertise (FASD ONE) See www.fasdontario.ca to find this document, as well as documents dedicated to Respite Needs and Education. See www.fasdontario.ca to find this document, as well as documents dedicated to Respite Needs and Education.www.fasdontario.ca Towards a Provincial Strategy Advancing Effective Service Provider Practices in Fetal Alcohol Spectrum Disorder (FASD) 2010 Intervention and Support Working Group

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/literature To determine what practices are most effective with individuals affected by FASD- resulted in a review of existing resources/literature To determine if service providers in Ontario are using these practices- survey of the parents/caregivers of children with FASD in Ontario To determine if service providers in Ontario are using these practices- survey of the parents/caregivers of children with FASD in Ontario

5 Results Eight primary effective practices were identified as critical in the successful support of this population; Eight 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 supports 30 service providers in Ontario were identified as effective and all 30 confirmed their consistent support and/or use of these eight practices 30 service providers in Ontario were identified as effective and all 30 confirmed their consistent support and/or use of these eight practices

6 Acknowledgements Stephanie 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 2002 Stephanie 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 2002 Ann Streissguth, 1997 Ann Streissguth, 1997 Dan Dubovsky from SAMHSA FASD Center for Excellence, Rockville MD Dan Dubovsky from SAMHSA FASD Center for Excellence, Rockville MD Nathan Ory, M.A. Nathan Ory, M.A. Diane Malbin, MSW from FASCETS, Portland, Oregon Diane Malbin, MSW from FASCETS, Portland, Oregon

7

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 damage pFAS- Partial Fetal Alcohol Syndrome- 2 out of 3 features, neurological damage ARND- Alcohol Related Neurodevelopmental Disorder- no facial features, neurological damage

9 FAS – only the tip of the iceberg FAS & pFAS> Collectively represent approx. 15% of those affected approx. 15% of those affected ARND>Represents 85+% of those affected- most will go unrecognized Current 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, 1996 FASD 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 performance Poor regulation of emotion- acts immature Poor memory-erratic (esp. short-term) Lack of abstract reasoning Failure to predict Do not understand cause and effect Fails to generalize Tendency to be oppositional or boastful with figures of authority Poor self-monitoring Poor sense of self Strong verbal expression Poor receptive language Short attention span- erratic/impulsive Difficulty with time concepts Difficulty with transitions Appears unmotivated/ lazy (cannot ‘walk the talk’) or manipulative Sensory 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 problems Disrupted 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%)

13 Effective Intervention and Support

14 Diagnosis Diagnosis is critical for Effective Intervention Diagnosis is critical for Effective Intervention Research indicates that prognosis is best with diagnosis before the age of six Research indicates that prognosis is best with diagnosis before the age of six Accurate diagnosis assists caregivers to understand the disability and adjust intervention strategies- Typical behavioural supports tend to be ineffective Accurate diagnosis assists caregivers to understand the disability and adjust intervention strategies- Typical behavioural supports tend to be ineffective Appropriate support and understanding acts as a protective factor against secondary disabilities Appropriate support and understanding acts as a protective factor against secondary disabilities

15 Diagnosis (cont.) To reduce unrealistic expectations-look more capable To reduce unrealistic expectations-look more capable Allows for life long planning for supports Allows for life long planning for supports This information may result in the prevention of other affected children (education, monitoring and support for mom) This 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 interventions 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 interventions Early recognition allows for better outcomes for both the individual and their family Early recognition allows for better outcomes for both the individual and their family

16 Comparing FASD, ADHD and Oppositional Defiant Disorder Dan Dubovsky, 2008 FASDADHD Oppositional Defiant Disorder Do not complete tasks -may or may not take in information -cannot recall information when needed -cannot remember what to do -takes in information -can recall information when needed -get distracted -takes in information -can recall information when needed -choose not to do what they are told Provide one direction at a time Limit stimuli and provide cues Provide positive sense of control; limits and consequences

17 Beliefs Dictate Interventions Behaviours are willful =Punish Behaviours are symptoms =Support *Education and Training in FASD is critical to this understanding!

18 Behaviors, Misconceptions and Accurate Interpretation BehavioursMisconception Accurate Interpretation Noncompliance Willful misconduct, attention seeking, stubborn, everyone does this at times Difficulty translating verbal direction into action, doesn’t understand, chronic memory problems Repeatedly making the same mistakes Willful misconduct, manipulative Cannot link cause to effect, can’t see similarities, difficulty generalizing Often late or doesn’t attend appointments at all Lazy, slow, willful misconduct, lots of people are late Can’t understand the abstract concept of time, needs assistance organizing, needs ongoing support and reminding

19 Behaviors Misconceptions and Accurate Interpretation BehavioursMisconceptions Accurate Interpretation Not sitting still/fidgeting Seeking attention, bothering others, willful misconduct, normal for this age Neurologically based need to move while learning/listening, sensory overload Poor social judgment Poor parenting, willful misconduct, neglected/abusive childhood Unable to interpret social cues from peers/others, can’t control impulses Overly physical Willful misconduct, deviancy Hyper or hypo-sensitive to touch & environment, can't understand social cues regarding boundaries

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 field In addition to the problem of no diagnosis we see high rates of misdiagnosis Diagnosis is not enough…we must then understand the affects of FASD and what supports will result in success- typical behavioural approaches are not usually successful Education 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, shuts down -IS a problem -Acts Immature To 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: - Assuming -Punishing -High Expectations -Failure -Changing People -Trying Harder To : -Observing -Preventing Problems -Appropriate Expectations - Success -Changing Environments -Trying Differently

23 Paradigm Shift UNABLE not unwilling to understand consequences 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.” “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 2000 We are changing what We are changing what WE do, not the person “If they could get it for themselves, “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. Get Curious: When you seek to change the individual, ask yourself what is it that you also need to change. Notice your own reactions Notice your own reactions Catch yourself assuming Catch yourself assuming Observe disruptions in routine Observe disruptions in routine Look at the environment Look 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 reaction TheResults Re- frame and Prevent Rigid, perseverates, difficulty stopping/ changing activities Stop when told, no resistance He/she is controlling oppositional and bossy Interrupt, assert control, require transition Resistance,Anger, BIG Tantrum Adjust workload to achieve closure, give time Sensory issues- over stimulated, over whelmed, distractable Pay attention, Sit still, ignore distractions He/she is not trying, undisciplined off task, ADD, Irritated, Anger Punish, more work, medicate, no recess Agitation, anger, avoidance, anxiety, tantrums Evaluate the environment, reduce stimulation, provide breaks

26 Start with Seeing Success Attendance is success Attendance is success Not having secondary disabilities is success Not having secondary disabilities is success Having a good day is more important than completing all assignments Having a good day is more important than completing all assignments Learning how to self monitor and self regulate is just as important as learning math Learning how to self monitor and self regulate is just as important as learning math Giving the words is not giving the answers Giving the words is not giving the answers If he is successful in 1 class than why push for more? If he is successful in 1 class than why push for more?

27 Positive Strength Based Approach Assessment includes determining strengths and weaknesses Includes; -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 willful A positive approach; - moves from punishment to understanding and changing the environment or expectations - moves from punishment to understanding and changing the environment or expectations -moves from trying to change symptoms to changing our reactions -moves from trying to change symptoms to changing our 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 service provider strengths to determine strong supports -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 -positive/strength based activities are never used as a treat or punishment resulting from good or bad behaviour

29 Strengths of People with FASD great speakers working with hands friendly caring trusting creative don't give up easily musical artistic

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 shame Talk about FASD – no shame FASD is a disability FASD is a disability The ability to express their challenges and strengths will help them advocate for themselves in adulthood The 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. Supervision is an absolute MUST. All the time- type/intensity dependent on functional level. Structure keeps the person anchored in time and reduces anxiety. Structure keeps the person anchored in time and reduces anxiety. Helps them think less-anticipate/predict more Helps them think less-anticipate/predict more Means 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. Means 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 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. Support means modeling, cueing, prompting and getting everyone on board with it. What is modeling? 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 tasks Step 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)

35 Structure Supervision Support

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.”“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.Show them what the expected behaviour looks like. If time, change the calendar, write a post-it note. Organize for them.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?” 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 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 Be ready. A birthday + long weekend + sharing your attention = disaster

38 Memory Strategies Keep your routine!!! Keep your routine!!! “Tacos on Tuesdays” “House cleaning on Saturdays” Colour-code to a calendar or day timer Colour-code to a calendar or day timer Schedule in locker Schedule in locker Post lists, charts, pictures- visual cues Post lists, charts, pictures- visual cues Review, reteach, remind Review, reteach, remind “Give gentle reminders rather than nags and then watch him like a hawk” faslink “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. 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; 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 -parenting techniques -education -education -justice system and -justice system and -treatment (motivational interviewing, cognitive behavioural therapy, group therapy and AA/NA groups) Dubovsky, 2008. -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. 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. Match your language to that of the level of the person. Consider variations depending emotional state. Use eye contact and exact repetition Use eye contact and exact repetition 10 words or less, simple and clear 10 words or less, simple and clear Come to the end of the thought and wait a few seconds Come to the end of the thought and wait a few seconds Avoid giving instructions in places where you can’t control the environment (the mall) Avoid giving instructions in places where you can’t control the environment (the mall) Body/facial expression exaggerated Body/facial expression exaggerated State directions in positive terms (what they can do vs what they cannot do) State directions in positive terms (what they can do vs what they cannot do) Check for concrete understanding 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-concrete Refrain from the use of sarcasm and ensure individual has jokes explained to reduce misunderstanding and conflict-concrete Always refer to persons in a group not ‘they’ or ‘them’- be concrete Always refer to persons in a group not ‘they’ or ‘them’- be concrete Link one task to another to establish sequences i.e. the bus comes after breakfast Link one task to another to establish sequences i.e. the bus comes after breakfast Use sign language if possible Use sign language if possible Be careful with abstract words (‘get ready’) or generalize (‘watch’) Be careful with abstract words (‘get ready’) or generalize (‘watch’)

42 Abstract Language Why?, Wait, Watch, Listen Why?, Wait, Watch, Listen Get ready, Clean up Get ready, Clean up Join, Get in line Join, Get in line Respond, Choose Respond, Choose Be responsible/appropriate Be responsible/appropriate Do it later, Wait Do it later, Wait Use your words, Ask for help Use 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.”

43 Visual Cues Visual cues can be used to reduce the amount of verbal communication required. It can be used to communicate; Physical Boundaries Physical Boundaries Rules Rules Personal Routines Personal Routines Schedules Schedules Anger Management Plans Anger Management Plans Etc. Etc.

44 Pictorial Cueing

45 Pictorial/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…..

46 Communicating a Transition Routine and Structure Routine and Structure Pictures on hand (wall, wallet, desk) Pictures on hand (wall, wallet, desk) A Gesture A Gesture Marking on floors Marking on floors Visual clock Visual clock Watch alarm Watch alarm Other concrete object Other 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. 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 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 awareness Includes acute awareness of noise/lights/sound/smells, lowered awareness of pain and temperature, tip toe walking, poor body awareness Integration: Includes hand preference delayed, poor eye- hand co-ordination and problems with motor planning (may have apraxia) 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 colours Pale/ soft colours Bookshelves turned so all information is not ‘in your face’ Bookshelves turned so all information is not ‘in your face’ Limit number of pictures Limit number of pictures Reduce smells/ sounds in the environment (tennis balls on chair legs) Reduce smells/ sounds in the environment (tennis balls on chair legs) Minimalist environment-less knick-knacks, less furniture, less choices 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 chair Seating-exercise ball, rocking chair, bean bag chair Lighting-go natural, watch the glare, lava lamps Lighting-go natural, watch the glare, lava lamps Visual Stimulation-de-clutter, muted colours Visual Stimulation-de-clutter, muted colours Calming tools-fidget toys, lap blankets, bubble wrap, weighted backpack. Calming tools-fidget toys, lap blankets, bubble wrap, weighted backpack. Organizing-big calendar, gum 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-stimulated Why 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 closet A tent Tarp lean Bookcase without shelves secured to the wall Sunglasses, headphones and a hoodie

54

55

56

57 Sensory Diet What is it? A balance of sensory feedback activitiesA balance of sensory feedback activities Includes a combination of alerting, organizing and calming 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.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.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)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)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.Crunching dry cereal, popcorn, chips, crackers, nuts, pretzels, etc. Taking a showerTaking a showerOrganizing Chewing on gum, granola bar, bread crusts, bagels, licorice, dried fruit, etc.Chewing on gum, granola bar, bread crusts, bagels, licorice, dried fruit, etc. Pushing or pulling heavy loadsPushing or pulling heavy loads

59 Sensory Diet Ideas Calming Sucking on a hard candy, frozen fruit barSucking on a hard candy, frozen fruit bar Pushing against walls with hands, shoulders, back, butt, headPushing against walls with hands, shoulders, back, butt, head Back rubbingBack rubbing Taking a bath.Taking a bath.

60 Sensory Ideas Adults may be more subtle but still in need of sensory integration. Adults may be more subtle but still in need of sensory integration. A firm hand on shoulder with medium pressureA firm hand on shoulder with medium pressure 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 need Let 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, 2007 Case 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 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” “Problems translating verbal directions into action” Allan Mountford “I’d rather look bad than stupid” Overly stimulated “I can’t take it anymore” 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 Dubovsky Unresolved grief and loss issue related to time of year “My birth mother gave me up on my birthday” Bill Dubovsky Patterned behaviour with authority (sarcasm) tit for tat constantly Patterned behaviour with authority (sarcasm) tit for tat constantly Negative Blueprint “I’m always in survival mode even when you show me you care about me” Negative 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: Remember that normal teen issues are: a. feel in control b. feel independent from authority Goal: Give the person the idea of what he or she would actually wish to do Goal: Give the person the idea of what he or she would actually wish to do 1 st: Get the idea in their mind 1 st: Get the idea in their mind Create “accidents” that will cue the person to do the desired behaviourCreate “accidents” that will cue the person to do the desired behaviour Then: Agree with them by going in their direction. Then: 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 with What you are comfortable with What it takes to get others on board What it takes to get others on board Have one lead person Have one lead personDon’t: Let others convince you that the truth is best Let others convince you that she has to know everything

67 Maneuvering the Environment for Success - Examples Setting up his first apartment and/or job Check it out first, have her drop by spur of the moment. Check it out first, have her drop by spur of the 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, cleaning staff, landlords, etc.) Get others saying the same thing (bus drivers, 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 with Alzheimer's Remember it’s like you are dealing with a youth with Alzheimer's

68 Time Visual timer, ticking timer or time timer Visual timer, ticking timer or time timer Be careful when you say 2 o’clock. It could mean 2:01 to 2:59 Be careful when you say 2 o’clock. It could mean 2:01 to 2:59 Use charts to link time and activities I.e. clocks, words, activity (bathroom chart) Use 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 curfew Give adults in SIL a watch that can be programmed to go off at curfew Gadgets that have hourly chimes or pill containers that can be set for up to 5 alarms (Circuit City) Gadgets 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 Teach money association to objects Point out good spending decisions Point out good spending decisions Create a learning savings in class and keep track on a white board, where appropriate Create a learning savings in class and keep track on a white board, where appropriate Before going in to the store, talk about what’s going to happen, make a list and stick to it! Before 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. 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 money Always give a ticket rather than money Never give a credit card or gas card-make up a reason why you can’t have one either Never give a credit card or gas card-make up a reason why you can’t have one either Own up to your mistakes. Think aloud. Own up to your mistakes. Think aloud. Get a Power of Attorney Get a Power of Attorney

70 Life 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 machines Have instructional pictures on machines Make a shopping list and go at low times Make a shopping list and go at low times Buy food mixes that have pictures Buy food mixes that have pictures Use the microwave when ever possible Use the microwave when ever possible Pictures or words for all shelving and cupboards Pictures or words for all shelving and cupboards

71 Self Care/Hygiene Create Bathroom charts with pictures of clocks and matched activity for morning routines Create Bathroom charts with pictures of clocks and matched activity for morning routines Practice shaving with a razor, putting on a condom Practice shaving with a razor, putting on a condom Encourage practicing for feminine hygiene Encourage practicing for feminine hygiene Use egg timer for teeth brushing Use egg timer for teeth brushing Teach/model how to use soap, shampoo, toothpaste- don’t assume they know how. Check regularly to see if they have forgotten Teach/model how to use soap, shampoo, toothpaste- don’t assume they know how. Check regularly to see if they have forgotten

72 Rages Poor emotional control 0-100 in 3 seconds Poor emotional control 0-100 in 3 seconds Frequently does not understand social cues until it is too late Frequently does not understand social cues until it is too late Unable to verbalize the issue in the moment Unable to verbalize the issue in the moment----------------------------------------------------------- Prevent it. Low stimulation, lots of breaks Prevent it. Low stimulation, lots of breaks Be gentle and direct when it is escalating Be gentle and direct when it is escalating Coach others not to engage or push back during a rage Coach others not to engage or push back during a rage When it is over make apologies and move on When it is over make apologies and move on Later review calming strategies for next time. Later review calming strategies for next time.

73 Confabulation If I think it, it must be true If I think it, it must be true I hope this is what happened I 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 problems Perception is complicated by long-term memory problems He must persist in the story no matter what He 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___ whenever there is confusion about and event. We need to get this issue cleared up”. 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 Teach the moral lesson much later- no punishment

74 Stealing If no one is around it, it is not owned by anyone If no one is around it, it is not owned by anyone Finders Keepers Finders Keepers I see other people doing this I see other people doing this I NEED this ___ to survive I NEED this ___ to survive----------------------------------------------------------- Prevent it. Label all her things Prevent 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 backpack Have her dump out her backpack Gently point out what is not hers Gently point out what is not hers Give back immediately Give back immediately Give the lesson later- not about punishment Give the lesson later- not about punishment

75 Accommodations 1. FASD is an invisible physical disability 2. Brain structure and function is changed 3. Behaviours are symptoms 4. Trying harder to change behaviours makes things worse 5. Recognizing the disability and providing accommodations prevents problems 6. This is what we do with people with visible disabilities 7. It 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) 1. Develop & Promote Relationships Across All Sectors 2. Develop Specialized Clinical Skills & Services 3. Education 4. Research 5. Recruitment & Retention 6. Data – Gap Identification 7. Unified Community Voice For more information contact Nancy Hall at nhall@bethesdaservices.com or 905-684-6918 X312 nhall@bethesdaservices.com

77 Resources Edmonton and Area Fetal Alcohol Network. (2004). FASD strategies not solutions. Published by The Government of Alberta Children’s Services. www.region6fasd.ca Edmonton and Area Fetal Alcohol Network. (2004). FASD strategies not solutions. Published by The Government of Alberta Children’s Services. www.region6fasd.ca www.region6fasd.ca Graefe, Sara. (2006). Living with FASD: A guide for parents. Vancouver: Groundwork Press. 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. 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. 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, 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. 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. 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.ca "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.ca http://www.skfasnetwork.ca/Network%20Resources%20&%20Materials.h tml http://www.skfasnetwork.ca/Network%20Resources%20&%20Materials.h tml http://www.skfasnetwork.ca/Network%20Resources%20&%20Materials.h tml http://www.skfasnetwork.ca/Network%20Resources%20&%20Materials.h tml http://www.come-over.to/FAS/faslinks.htm Best FASD Sites http://www.come-over.to/FAS/faslinks.htm Best FASD Sites http://www.come-over.to/FAS/faslinks.htm Fetal Alcohol Spectrum Disorder, by Toronto FASD Coordinating Network 2008 Fetal Alcohol Spectrum Disorder, by Toronto FASD Coordinating Network 2008 http://www.torontocas.ca/wp-content/uploads/2008/09/FASD.pdf http://www.torontocas.ca/wp-content/uploads/2008/09/FASD.pdf http://www.torontocas.ca/wp-content/uploads/2008/09/FASD.pdf Strategies Parents find Helpful in Raising Children Living with FASD, prepared by Czaee Rajwani. Toronto: St. Michael’s Fetal Alcohol Spectrum Disorder Clinic, 2007. Strategies 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) http://come- over.to/FAS/PDF/TorontoStrategiesParents.pdf http://come- over.to/FAS/PDF/TorontoStrategiesParents.pdf http://come- over.to/FAS/PDF/TorontoStrategiesParents.pdf http://come- over.to/FAS/PDF/TorontoStrategiesParents.pdf 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 to http://listserv.rivernet.net/mailman/listinfo/fas-link 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 to http://listserv.rivernet.net/mailman/listinfo/fas-link http://listserv.rivernet.net/mailman/listinfo/fas-link Olderfas 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 to http://groups.yahoo.com/group/Olderfas/ Olderfas 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 to http://groups.yahoo.com/group/Olderfas/ http://groups.yahoo.com/group/Olderfas/ Picture This: Life as a Parent of Children with FASD (podcast): http://citizenshift.org/picture-this Picture This: Life as a Parent of Children with FASD (podcast): http://citizenshift.org/picture-thishttp://citizenshift.org/picture-this


Download ppt "Effective Practices for Supporting Individuals with Fetal Alcohol Spectrum Disorder (FASD) Presented by Nancy Hall on behalf of The Southern Network of."

Similar presentations


Ads by Google