1. MRFASTC Latest Treatment Strategies for Children and Adults with FASD March 22, 2013 University of Missouri Dr. Leigh E. Tenkku MRFASTC Project Director

2. MRFASTC Prologue An individual’s place, and success, in society is almost entirely determined by neurological functioning. A neurologically injured child is unable to meet the expectations of parents, family, peers, school, career and can endure a lifetime of failures. The largest cause of neurological damage in children is prenatal exposure to alcohol. These children grow up to become adults. Often the neurological damage goes undiagnosed, but not unpunished. Faslink website

3. MRFASTC Overview Treatment across the life span By age group Infancy through Adulthood Family issues Lifelong support services and resources

4. MRFASTC Lifespan View of FASD Much of what we know is anecdotal “Behavioral phenotype”: development progresses somewhat predictably IQ may not predict functional performance Prevention of secondary disabilities is paramount Treatment implications follow

5. MRFASTC Infancy and Early Childhood Poor habituation Irritability in infancy Poor visual focus Sleep difficulties Mild developmental delays Distractibility and hyperactivity Difficulty adapting to change Difficulty following directions

6. MRFASTC Middle Childhood ADHD symptoms interfere with learning Academic failure/school trouble Concrete thinking may frustrate relationships Gullible Difficulty predicting and/or understanding consequences Difficulty with memory may bring negative feedback to child Poor comprehension of social rules/expectations

7. MRFASTC Adolescence Poor adaptive functioning Confabulation—lying or stealing often without malice, result of concrete thinking Faulty logic Low self-image and motivation Academic achievement lower than expected Inappropriate sexual behavior Adolescence

8. MRFASTC Adulthood Not as much known about this May seem more capable than they really are Development may continue to be uneven Secondary disabilities may predominate Natural support network may fall away Available services may be crisis oriented, not prevention or support based Employment failure likely

9. MRFASTC Typical Difficulties For Persons With an FASD Sensory: May be overly sensitive to bright lights, certain clothing, tastes and textures in food, loud sounds, etc. Physical: Have problems with balance and motor coordination (may seem “clumsy”).

10. MRFASTC Typical Difficulties For Persons With an FASD Information Processing: Do not complete tasks or chores and may appear to be oppositional Have trouble determining what to do in a given situation Do not ask questions because they want to fit in Have trouble with changes in tasks and routines

11. MRFASTC Typical Difficulties For Persons With an FASD Have trouble following multiple directions Say they understand when they do not Have verbal expressive skills that often exceed their verbal receptive abilities Cannot operationalize what they’ve memorized (e.g., multiplication tables) Misinterpret others’ words, actions, or body movements How do I ‘straighten’ my room? Information Processing :

12. MRFASTC Typical Difficulties For Persons With an FASD Tend not to learn from mistakes or natural consequences Frequently do not respond to reward systems (points, levels, stickers, etc.) Have difficulty entertaining themselves Naïve, gullible (e.g., may walk off with a stranger) Struggle with abstract concepts (e.g., time, space, money, etc.) I’m late! Executive Function and Decision-Making : Repeatedly break the rules Give in to peer pressure

13. MRFASTC Typical Difficulties For Persons With an FASD Self-Esteem and Personal Issues: Function unevenly in school, work, and development – Often feel “stupid” or like a failure Are seen as lazy, uncooperative, and unmotivated –Have often been told they’re not trying hard enough May have hygiene problems Are aware that they’re “different” from others Often grow up living in multiple homes and experience multiple losses

14. MRFASTC Potential Secondary Disabilities Mental health problems (over 90%) Trouble with the law (60%) Sexual misconduct (49%) Disrupted school experiences (60%) Problems with alcohol and/or drug use (35%) Confinement (50%)

15. MRFASTC Universal Protective Factors: Environmental Living in a stable and nurturing home (particularly ages 8-12) Being diagnosed before age 6 Not being a victim of violence Not having frequent changes of household Having received developmental disabilities services

16. MRFASTC Universal Protective Factors: Intrinsic Having a diagnosis of FAS (rather than other effects of alcohol exposure) IQ score below 70

17. MRFASTC Preventing Secondary Disabilities Diagnosis as intervention Protective factors as a guide Family education—convey message of hope and critical need for support Increased supervision throughout adolescence and early adulthood Proactive preparation for adulthood Plan for supported living and employment Proactive mental health services Community education

18. MRFASTC Behavioral and Educational Interventions Strategies traditionally gleaned from other disabilities and practical wisdom gained by parents and clinicians. In general, helpful interventions include: Stable home environment Working with educational staff or therapists and working with social services (e.g., foster care) to determine individualized treatment plans If developmental delay is suspected in a child under age three, refer to early intervention program.

19. MRFASTC Reframing From interpreting behaviors as To understanding the individual Won’tCan’t BadFrustrated, challenged LazyTried hard LiesConfabulates, fills in Doesn’t tryExhausted or can’t start MeanDefensive, hurt, abused

20. MRFASTC From To Fussy, DemandingOversensitive ResistingDoesn’t get it Trying to make me mad Can’t remember Trying to get attention Needing contact and support Acting youngerBeing younger Reframing

21. MRFASTC “Age–Appropriate Behavior” Chronological age w/expectations Age 5 Sit still for 20 min Age 10 Know right from wrong Age 18 Be independent Developmental age expectations Age 5 going on 2 Sit still for 5-10 10 going on 6 Developing sense of fairness Age 18 going on 10 Needs structure and guidance

22. MRFASTC Spectrum of Capacities Expressive Language20 Reading: decoding16 Reading comprehension 6 Money and time concepts 8 Emotional maturity 6 Physical maturity18 Social skills 7 Living skills11 Skill/Characteristic Developmental Age

23. MRFASTC Set appropriate expectations that are: Based upon cognitive functioning Developmentally appropriate Understood by the child Attainable FASD Toolbox for Teachers, www.do2learn.com; Trying Differently: A Guide for Daily Living and Working with FASDs and Other Brain Differences, Fetal Alcohol Syndrome Society Yukon, 2005.www.do2learn.com

24. MRFASTC Safeguarding Think “younger” Think “more supervision” Make no assumptions about understanding Watch for vulnerability

25. MRFASTC 8 Magic Keys: Guidelines for working with students with FAS Concrete – Speak in concrete terms; Avoid using words with double meanings Consistency – Students with FAS do best in environments with few changes. This includes language; Use the same key words each time. Repetition – Teach and re-teach and re-teach. Routine – When students with FAS know what to expect, they experience less anxiety and are better prepared to learn FAS Alaska, by Deb Evenson & Jan Lutke, 1997

26. MRFASTC 8 Magic Keys (cont ’ d) Simplicity – Keep it short and sweet Specific – Say EXACTLY what you mean Structure – An environment with structure and boundaries helps keep students with FAS on track; It ’ s “ the glue. ” Supervision – Provide constant supervision to model and help develop appropriate behavior

27. MRFASTC “Trying Differently…” Things that don’t work: star charts time-outs taking things away bribes rewards missing important events as punishment reducing structure and support over time Trying Differently: A Guide for Daily Living and Working with FASDs and Other Brain Differences, Fetal Alcohol Syndrome Society Yukon, 2005.

28. MRFASTC Words to Use: “Show Me” “Get your body in control” (instead of “calm down”) “Let’s start here” (then demonstrate) “It’s time to go when…” (provide concrete example) “Now” “Focus” “Trying Differently…”

29. MRFASTC Give specific, positive feedback immediately Minimize materials in a lesson – too much on a worksheet can over-stimulate Encourage the use of “fidget toys” Reinforce routine and structure with visuals Use color coding for different subjects Clearly define boundaries with color tape When lining up use tape to mark space or paper footprints to mark how far apart to stand Label areas and materials with words and visuals at eye level Make accommodations where needed “Trying Differently…” Key Strategies

30. MRFASTC Resources for Educators Do 2 Learn : http://do2learn.com/disabilities/FASDtoolbox/index.htmhttp://do2learn.com/disabilities/FASDtoolbox/index.htm FAS Alaska: 8 Magic Keys http://www.fasalaska.com/8keys.htmlhttp://www.fasalaska.com/8keys.html NOFAS: http://www.nofas.orghttp://www.nofas.org Reach to Teach: Educating Elementary and Middle School Children with Fetal Alcohol Spectrum Disorders, DHHS Pub. No. SMA-4222. Rockville, MD: Center for Substance Abuse Prevention, Substance Abuse and Mental Health Services Administration, 2007. Fetal Alcohol Syndrome Society Yukon (FASSY): “Trying Differently: A Guide for Daily Living and Working with FASDs and Other Brain Differences” (e-mail fascap@klondiker.com)

31. MRFASTC Evidence-based interventions for children with FASDs Project Bruin Buddies – social skills training Georgia Math Interactive Learning Experience – math knowledge and skills training ALERT program – behavior regulation and executive functioning Parent therapy program – improve parent effectiveness and reduce behavior problems

32. MRFASTC Project Bruin Buddies Parent Assisted Child Friendship Training Compared a Child Friendship Training (CFT) group to a Deferred Treatment Control (DTC) group Parents and children attended 12 - 90 minute sessions over 12 weeks Outcomes Children in the CFT group showed improved social skills and fewer problem behaviors than children in the DTC group Social skills gains were maintained over a 3-month follow up Ed Riley Presentation Online

33. MRFASTC Georgia Math Interactive Learning www.Do2learn.com

34. MRFASTC University of Chicago - Neurocognitive habilitation program focused on improving child’s executive functioning Focused on self-regulation Car engine metaphor: brain is a like a car engine and can make their body run in high, low or just-right gear Intervention included 12 weekly 75-min group therapy sessions with parents participating in a parent education group Results indicated significant improvement in executive functioning skills of children in the program www.alertprogram.com

35. MRFASTC Families Moving Forward http://depts.washington.edu/fmffasd/ Tab: Publications and Links Slide 26

36. MRFASTC New pilot interventions for youth and young adults with FAS/FASDs UCLA – Substance Abuse Intervention for youth and young adults with FASDs St. Louis – Partners for Success Intervention for Youth and Young Adults with FASDs

37. MRFASTC St. Louis Project Recruit 100 youth and young adults ages 16-25 and their families Diagnosis of FASDs provided Designing the intervention (Year 1) Testing the intervention (Year 2) Test for sustainability of the intervention (Year 3) Analyze results (Year 3)

38. MRFASTC Partners for Success Intervention In-home therapy visit 2xs a month for individual youth and their families Mentor “coach” for the young person Parent education support session Ongoing support for both family and individual

39. MRFASTC FAMILY ISSUES

40. MRFASTC Antecedents of Family Stress: Child Characteristics May “look good”-others may not understand challenges and fail to support family Difficulty learning from experience-need to endure frustrating “re-learning” Distractibility/impulsivity-need for constant vigilance and supervision Social difficulties-may lead to isolation of the entire family Sleep disturbances-disrupted sleep for parent

41. MRFASTC Antecedents of Family Stress: Parent Issues Alcohol use and parenting child with FASD are a poor fit Prior parenting strategies may not work— leading to frustration and blame Exhaustion plays role in parental decision- making Relationships with spouse and other children may deteriorate

42. MRFASTC Antecedents of Family Stress: Community Issues Lack of knowledgeable medical providers and school personnel—may lead to delayed diagnosis and inappropriate interventions Lack of needed resources Child care programs Small classroom sizes Appropriate after-school programs Financial assistance Supervised living and employment arrangements Lack of appropriate criminal justice options

43. MRFASTC FAMILY INTERVENTIONS

44. MRFASTC Family Stress Intervention: Respite Care Short-term, temporary care of children with disabilities Provided in the home or in a variety of out of home settings Helps families avoid burnout, stress, etc. See resource list for National Respite Locator Service information If no program available, suggest creating an informal network of parents for respite care

45. MRFASTC Parent Stress Intervention: Support Groups Provide a safe, non-judgmental and confidential outlet for sharing Help parents cope and develop positive attitudes about the future Allow members to help each other through sharing of knowledge and experience Offer resources and information not easily available outside the group

46. MRFASTC Family Stress Intervention: Therapy Family therapy Help modulate stress Assist with relationship issues Behavior therapy “Talk” therapy not appropriate Assist family with providing structure and appropriate redirection and consequences Assist family in planning environmental modifications Finding a therapist—utilize professional with developmental disability experience

47. MRFASTC Family Intervention Strategies A combination of behavioral and environmental modifications may produce the best results Early and intensive alcohol and substance abuse education for the child Advise the family to model alcohol-free living

48. MRFASTC Family Education Advocacy education/resources Developmental progression and prevention of secondary conditions Increased supervision Sex education Planning for adulthood Supervision & Financial Employment & Housing

49. MRFASTC Other Types of Approaches to Treatment: Complementary Alternative Medicine Biofeedback Recreational therapy Relaxation therapy Creative art therapy Yoga/exercise Vitamins/herbal treatment

50. MRFASTC Parental Strategies “Strength-based parenting”—search for, affirm, and build on child’s strengths “Reframe” negative behaviors Use concrete language Use repetition and build routines Maintain high level of supervision, despite chronological age Educate all family members on FASD issues School and community advocacy

51. MRFASTC Disability Services Search for appropriate services never ends! Some individuals may be eligible for SSI Early intervention and childhood therapy services Occupational, physical, speech therapy Family education and support, respite care Services through state systems of care Supported living Supported employment Social and leisure programs

52. MRFASTC Special Topics: Alcohol Addiction and Parenting FASD and parental addiction a dangerous mix Parent characteristics & alcohol use: Impaired response time Impaired judgment Irritability Life stressors Money worries Job stress Interpersonal stress

53. MRFASTC Special Topics: Adults with FASD as Parents Impulsivity and poor judgment—poor fit with care of child Vulnerable to model ineffective parenting practices High risk for child neglect and abuse Will need extensive support Behavior management Home management Multi-generational alcohol use during pregnancy may occur

54. MRFASTC Epilogue Our job is to help these young people to be as successful as possible…..we just have to find the right tools to give them, their families and their environments