BrainSTARS: Weaving a safety net for children and adolescents who have Acquired Brain Injuries

1. BrainSTARS: Weaving a safety net for children and adolescents who have Acquired Brain Injuries Jeanne E. Dise-Lewis, Ph.D. Professor University of Colorado School of Medicine Director, Psychology Programs in Rehabilitation Medicine Children’s Hospital Colorado Jeanne.dise-lewis@childrenscolorado.org Vilans Medical Education June 7, 2012

2. Origins of BrainSTARS Manual Team-based neuropsychological evaluations of children seen in Physical Medicine & Rehabilitation outpatient clinic 10 years of work together as multidisciplinary team; several hundred neuropsychological assessments 85% requests for evaluation were for children who had had previous moderate-severe ABI– common themes and repetitive information About 100 requests/year for consultation from parents and school personnel about pediatric ABI sequelae Critical incidents in lives of children who had had pediatric ABI many years earlier suicide attempt, incarceration, school failure needed to offer more than one point in time evaluation

3. BrainSTARS Manual Empirically developed and field-tested based on 50 team-based neuropsychological assessments. Intended audience: the normal adults in a child’s world. Teaches them to understand how a child’s brain injury causes cognitive changes which in turn affect many areas of development. Teaches them to identify behavior and learning problems clearly. Connects these problems (symptoms) to underlying cognitive difficulties. Guides effective accommodations and interventions.

4. What is BrainSTARS in its essence? • Parent Pediatric manual for parents of children with moderate-severe ABI • Holistic, integrated understanding of moderate-severe Pediatric Acquired Brain Injury • What happens after brain injury in childhood or adolescence? • Interaction effects on development • What child guidance/teaching strategies are effective?

5. Intended use: BrainSTARS Manual A self-paced, stand-alone education about moderate-severe ABI for “regular people” to use in normal environments. 11th grade reading level, tabs, spiral binding, lots of white space, professional editing, multiple stopping points within short chapters. Use like a cookbook– Neurodevelopmental clusters and Index. Our hope: People would be able to understand their child and modify their expectations/features of the environment so that child could be successful in everyday settings in which all children grow, learn and develop.

6. Origins of BrainSTARS Consultation Model Continued requests from parents and/or school personnel for consultation despite having had one education session and manual. Manual still in shrink-wrap/ in Special Education office or library. Most people were in need of basic orientation to using manual, walking through the education provided, and guidance to individualize the material for a specific child. “The Manual is a heavy piece of work” Eric Hermans

7. Mild TBI (Concussion) vs. Moderate-Severe TBI Two different medical syndromes/ two different populations. Require very different types of education, approaches, and expectations. BrainSTARS is for Moderate-Severe TBI or ABI.

8. Mild TBI: Concussion in children/adolescents Brain should recover to full pre-concussion capacity in 3 months. There is an initial impact on neurocognitive abilities, which recover to baseline levels in 4-6 weeks for most children. There also is an impact on general physical and behavioral symptoms. It is important to prevent a second concussion before recovery from the first concussion– especially in <age 20. “Cognitive rest” may play a part in rate and completeness of recovery. Multiple concussions over a lifetime appear to have significant cumulative detrimental effects child vs adult concussion not studied

9. Treatment for Pediatric Concussion Provide family and child with good educational materials. emergency information education about expected symptoms and usual course of recovery Stay home from school/work/social activities for 2 days. Keep your head out of traffic for awhile (at least 8 days). Develop a school-based plan of accommodations providing a safety net for the student. Monitoring Collaboration among school, family, medical personnel Initiation of school-based accommodations for cognitive rest Kirkwood et al., 2007; Dise-Lewis 2011

10. Moderate-Severe Pediatric ABI • Directly alters brain development, which in turn affects: • cognitive development • psychological and emotional development • social development • school success

11. (Chapman, 2007)

12. Overly-documented Outcomes of Moderate-Severe PTBI • Reduced cognitive abilities: significant decrease in Wechsler IQ scores • Performance, or Non-verbal reasoning, IQ more affected than Verbal IQ • Reduced Executive Control (Executive Functions) and…

13. … • …a whole host of psychiatric diagnoses: ADD, ADHD, ODD, CD, I/EPD, Bipolar D, etc.D • Misidentification in school as ADD/ADHD or Significant Identifiable Emotional/ Behavioral Disorder deepens problem • 70 out of 70 consecutive referrals of PABI for neuropsychological evaluation had IEPs/504 Plans but only 4 had ABI/TBI classification

14. Commonly-documented Outcomes of Moderate-Severe PTBI: Effects on behavior • Child is unable to identify the true (underlying neurodevelopmental) source of his problem. • Child will “act out” confusion and cognitive problems behaviorally. • Problems are worst at transitions (change of class, elementary to middle school) and less structured times/settings (lunch room, playground, home vs. school). • Variability in presentation leads to moral/motivational hypotheses: “stubborn, unmotivated, bull-headed” as well as:

15. TBI Cycle Metacognitive Weaknesses Attention Processing Speed Organization Self-Regulation Executive Functions BRAIN INJURY Neurodevelopmental Deficits Specific Learning Disabilities Reading New Learning Note-taking Expressive Language Social Skills Test-taking Problem Solving Long-Range Projects Behavior Problems Has Temper Tantrums Poor Frustration Tolerance Messy Handwriting Doesn’t Follow Directions Looks “Blank” Fights With Others Fails Tests Can’t Keep Up With Peers

16. Important Educational Points: Moderate-Severe PTBI • Initial injury ripples out to cause global developmental deficits because important adults do not understand TBI phenomenon. • Behavior problems result from poor appreciation of cognitive deficiencies and their impact on everyday performance, thus widening the Individual <>Environment disparity. • Consequences-based methods are largely ineffective in teaching/changing behavior of students who have had PABI. Focus needs to shift to Antecedents in A-B-C Model. • The age at which the child sustained the brain injury is key to understanding what neurocognitive deficits likely underlie behavior problems.

17. ABI and Developmental Stages • Cognitive, personal-emotional, and social abilities emerge developmentally • Abilities developed at one stage of life form the foundation for more complex abilities • Capacities in process of development, and those not yet developed, are most vulnerable to brain injury • The earlier the injury, the more pervasive the impact on thinking, emotion regulation and behavior

18. Abilities that are just developing, or have not yet emerged, are the most sensitive and most likely to be disrupted. These areas are likely to be the Achilles heel for a child with an acquired brain injury, even after he grows up.

19. Neurodevelopmental Ability A Brain-based skill or competency that Has an developmental sequence of skill acquisition Piaget, Erikson, Kohlberg

20. Developmental Pyramid: Language 16-19: written language 12-16: reading comprehension 6 - 12: reading decoding 3 -6: expressive language 0 - 3: receptive language

21. Maturation of Temporal RegionSlides courtesy of Ron Savage Ed.D.

22. (Savage, 1999)

23. Developmental Pyramid: Executive Functions 16-19: reasoning, judgment 12-16: organization, working memory, self and task monitoring 6 - 12: attention, initiation, planning 3 -6: mental flexibility, emotion regulation 0 - 3: cause/effect relationships, self-regulation

24. The Diagnosis/Classification does Matter • Typical discipline, parenting, educational interventions, child guidance strategies are based on applying consequences (positive or negative) to behavior. • Behavior development plans are based on applying consequences to behavior. • These work for typically developing children and for children with psychiatric diagnoses. • These are almost always ineffective for children or adolescents who have had TBI • a primary executive function diagnosis (consider Autism)

25. Educate school personnel and family. Keep child functioning in everyday settings in which his/her peers are learning, growing, and developing. Identify primary or underlying neurodevelopmental deficits that are tanking the child’s performance. Especially MPS, executive functions, reading Remediate/ accommodate these deficits. Focus academic program on strengths. Identify and teach age appropriate play/ peer skills. Nurture hobbies and interests through which friendships can develop. Effective TBI Intervention

26. Child’s stage of development when TBI happened Child’s stage of development now The What? of accommodations— Likely Achilles’ Heel Likely weaknesses The How? of accommodations— The social milieu The everyday environment The specific skills The materials The personnel Know Two Developmental Stages

27. The ABCs of Successful Behavior and Learning Antecedents hold the key to developing appropriate behavior for the student with BI Behavior specify clearly/ link with underlying neurodevelopmental deficits Consequences consequences-based approaches are ineffective with children who have TBI

28. Antecedents Set the Stage Physical Environment Visual Cues Physical Prompts Modeling of Skills and Positive Behavior Language Environment Instructions and Directions Learning Materials Schedules and Mini-Schedules Child’s Physical and Emotional state

29. Antecedents to new learning Assure optimal physical and emotional state address student’s anxiety good nutrition and energy Provide a “warm-up” before tests, class-work, introduction of new material. Carefully task analyze activity and provide explicit instruction for each component. Don’t quiz or question; teach using the “I do/ We do/ You do” model.

30. Antecedents: Physical environment and workspace

31. Set the stage for success: Increase structure, clarity, and predictability Provide prepared materials Make the task concrete

34. Use the everyday environment Stick to a routine during the day and problem-solve snags in the environment where they occur. Organize work, play, relaxation, and regrouping spaces to support the activity. Prepare your child in advance if there is something you need him to do Focus on the positive: tell your child what to do; avoid telling the child what s/he should stop doing. Rehearse with your child what he/she will be doing during unstructured times or in new settings.

36. Teach new skills Hold a small and clearly defined set of expectations for your child. Use visual reminders and teach their use. Break down complex or multi-step activities and sequence them, using pictures or written phrases to serve as a concrete representation and reminder. Construct, and teach the use of, a daily planner. Role-play specific activities and desired behaviors. Teach play-yard or free time skills. Practice desired responses to stressful events.

37. Index and Neurodevelopmental Clusters • Developed by listing behavioral symptoms/ concerns of parents and teachers associated with Diagnostic Impressions from multidisciplinary neuropsychological assessments. • Provides a way to organize, integrate a host of disparate symptoms into a few main categories. • Provides “cookbook” use of manual.

38. It Definitely Takes Teamwork: Education, Communication, and Using Outside Resources

39. Referenced Works • Chapman S. (2007). Neurocognitive stall: a paradox in long-term recovery from pediatric brain injury. Brain Injury Professional, 3(4), 10-13. • Dise-Lewis JE, Lewis H, & Reichardt CS. (2009). BrainSTARS: Pilot data on a team-based intervention for children who have traumatic brain injury. Journal of Head Trauma Rehabilitation, 24(3), 166-177. • Erikson EH. (1964). Childhood and Society. New York, NY: Norton. • Hendryx PM, Verdun WH. (1995). Diagnosis and treatment strategies for the latent sequelae of head trauma in children. J Cognitive Rehabilitation; 13: 9-11.

40. Referenced Works • Kirkwood, M. W., & Yeates, K. O. (2010). Mild traumatic brain injury in childhood. In V. Anderson & K.O. Yeates (Eds.). Pediatric Traumatic Brain Injury: New Frontiers in Clinical and Translational Research. Cambridge: Cambridge University Press. • Kirkwood MW, Yeates KO, Taylor HG, Randolph C, McCrea M & Anderson VA (2008). Management of pediatric mild traumatic brain injury: A neuropsychological review from injury through recovery. The Clinical Neuropsychologist, 22, 769-800. • Piaget J. (1936). Origins of Intelligence in the Child. London, England: Rutledge and Paul. • Ylvisaker M, Adelson D, Braga LW et al. (2005). Rehabilitation and ongoing support after pediatric TBI: twenty years of progress. J Head Trauma Rehabilitation, 20(1): 95-109.