Practical Behavior Solutions for Individuals Who Have Prader-Willi Syndrome

1. Practical Behavior Solutions for Individuals Who Have Prader-Willi Syndrome PWSA (USA) Conference – 10.26.19 Cindy Szapacs, M.Ed. BCBA Amy McDougall, M.S. Cindy.szapacs@gmail.comamy.l.mcdougall13@gmail.com

2. Today’s goals • Review the basics of behavior and behavior change • Review the uniqueness of Prader-Willi Syndrome and how that effects behavior and intervention • Discuss some practical solutions to address common problem behaviors displayed by individuals who have Prader-Willi Syndrome

3. What is “behavior?” Behavior is anything a person does that creates a change in the environment. It can be seen and counted. The term behavior is neutral. The effect the behavior has on the environment determines if the behavior is perceived as acceptable or not. Are “emotional control” and “anxiety” considered behaviors?

4. Emotion and Behavior (Friman, 1998) • In terms of behavior, emotion is not satisfactory to explain behavioral events. • Crying child complains that he or she feels anxious and then runs away. • Running away because of anxiety is an incomplete statement. • Public Events – behaviors we can see • Private Events – internal behaviors, that we cannot see • Frequently this is the controlling variable for those with PWS • Both type of events can co-occur.

5. Behavior does not occur in a vacuum Setting Event: something that occurred in the past that will effect the likelihood that an antecedent will trigger a specific behavior (hunger, fatigue, thirst, trauma, reinforcement, illness, medication change, etc.) Antecedent Behavior Consequence (attention, preferred items, escape, automatic reinforcement) Explains under what circumstance a behavior is likely to occur, and why

6. All behavior has a reason! (i.e. function) • Gain attention – ANY type of attention (praise, reprimand, facial expression, etc.) • Access tangible item • Access sensory stimulation • Escape demand, person, activity, situation (including escaping feelings/internal sensations of anxiety)

7. Behavior as communication • We tend to rely heavily on language as communication (i.e., “Why don’t they just tell me?”) • To have an individual verbally convey information about their wants and needs, they need to not only be self-reflective enough to identify the need, but also have the language skills to put that need into words. • Those with PWS are impacted by cognitive, language and social delays, all of which will interfere with their ability to verbally communicate wants and needs. • We need to problem solve and determine what the behavior is communicating.

8. Respond based on function • If for attention minimize/withdraw attention, ignore the behavior but not the child • If for preferred items  first/then statements, teach communication • If for escape  keep demands on them, chunk work, behavior momentum (start with easy tasks) • If for automatic reinforcement  teach time/place, teach leisure skills, teach alternative/incompatible behavior

9. “RESPECT THE PWS!”Barbara Haas-Givler, M.Ed. BCBA Do not underestimate the power setting events have on the behavior of individuals who have Prader-Willi Syndrome.

10. PWS results from damage to the hypothalamus When external stimuli are presented (for example, a dangerous stimuli), the hypothalamus sends signals to other limbic areas to trigger feeling states in response to the stimuli (in this case, fear). https://courses.lumenlearning.com/boundless-psychology/chapter/structure-and-function-of-the-brain/

12. Some Practical Behavior Solutions

13. Two main categories of behavior interventions • Preventative (Antecedent) • Implemented before the behavior occurs with the intent to prevent problem behavior or lessen the intensity/severity • Recommended method for those who have PWS • Reactive (Consequence) • Occurs in response to the individual engaging in problem behavior • Best when a plan is created before the behavior is observed and implemented with consistency • Includes positive reinforcement (”earning”) as well as punishment strategies

14. Prevention Strategies

15. Behavioral Skills Training (BST) • “a procedure consisting of instruction, modeling, behavioral rehearsal, and feedback that is used to teach new behaviors or skills” (Miltenberger, 2004 p. 558) • Research-based • This method can be applied to many different behaviors https://bsci21.org/behavior-skills-training-in-4-steps/

16. BST Example from “Real Life” Behavior – running away in parking lot • Instruction – Told child he needs to be “safe” in parking lots. Safe means stand with hand on car until Mom holds your hand. When walking, safe means holding adult’s hand or walking next to an adult. • Modeling – I stood with my hand on the car and said, “This is safe.” I then took his hand and we walked through the parking lot while I commented, “This is safe,” every few steps. • Rehearsal – Practiced in parking lot when we did not have time constraints. Reminded him of rules prior to rehearsal. • Feedback – Verbal praise, “Great job being safe!” while standing at car and while walking. Earned small trinket in store. If let go of car, I helped him put his hand back and restarted. If ran ahead of me or let go, I told him, “NOT safe,” and we returned back to the car to restart.

17. BST Example from “Real Life” Behavior – repetitive conversations, talking about inappropriate topics • Instruction – Told child that people only like to talk about something a few times and then move onto a new topic. People like talking to him when he asks a variety of questions and makes comments. I wrote down a visual representation of what conversations look like • Modeling – I initiated a conversation with him, using various different phrases and pointing to the visual I made. • Rehearsal – Using the visual and written scripts, we practiced conversations at home. We also did this immediately before we went to the pool. • Feedback – At the pool, following appropriate conversations/interactions, I praised him. When he made inappropriate or repetitive comments, I reminded him about being appropriate and supplied him with an appropriate phrase/topic. If he inappropriate interacts continued, I ended the interaction.

18. Positive Reinforcement Systems • Should be portable, flexible and easily seen by individual (“reminder”) • Clearly define what is expected • Start small and increase expectations • Immediate rewards will be more effective than delayed. May be able to add in delay over time. If system decreases effectiveness as you increase time/demand, move back to previous successful system. • Choose a system and consequences that can be implemented feasibly. • Get creative with rewards! Use your child’s restrictive interests or social personality.

19. What motivates us? Extrinsic Motivation (motivated to perform an activity to earn a reward or avoid punishment) VS Intrinsic Motivation (motivated to perform an activity for enjoyment and personal satisfaction) • Which is more motivating to your child at their developmental level?

20. Pause and reflect: Do you consider positive reinforcement to be “bribing”?

21. Examples of Positive Reinforcement Systems

22. “Catch them Being Good!” • How I earn marbles: • Sit at table for meals. • When asked to do something, I say “OK” and then do it. • Use a strategy. • Let someone help me. • Do something kind – give a compliment, help someone • Move quickly to next activity when one is over. • When my jar is filled, I earn: • Holden Daschel • Pokemon setGame D H

23. Garmin Vivofit Junior 2

25. Self-Monitoring with Positive Reinforcement Self & Match (Salter & Croce, 2014) www.selfandmatch.com This specific system should only be implemented by someone who has been trained or has Solid background in applied behavior analysis.

26. Use Visual Supports to Help with Consistency and Decrease Arguing room checklist - home

27. Use Visual Schedules to Increase Independence and Compliance “on the fly” schedule First Then app Choiceworks app

28. Social Stories • Note: Behavioral research does not show strong evidence that social stories alone are effective interventions. When used as part of a bigger package, they can be a helpful tool. Can be part of the rehearsal phase of Behavioral Skills Training, for example. • The goal is to make “gray” situations “black and white.” • Read when individual is calm, NOT in reaction to the problem behavior. • Should only be written in positive language – define what is expected, why it is expected, how the individual can engage in the behavior, and the expected behavior’s effect on other people • Wearing CPAP example. • Part of a bigger system.

29. Set Limits and Stick to Them! • Hoarding • Choose a container or containers that the individual can store their favorite “hoarding” items in. • When the container(s) are full, the individual chooses some to get rid or chooses to get rid of the newer items that do not fit. • Set limit as to how many things the individual can bring with them. Allow the individual a choice, but you decide the options. • Donating extra items may help the individual part with the items • Repetitive Activities • Set time limit or number of times/day individual can engage in activity • Receipt example

30. Repetitive Statements/Questions • Teach alternative statements – “I’m happy . . .” example • Set limit “I will answer 2 times and then I am done talking about that.” • Can use a visual – mark something to indicate how many times the individual has made a repetitive statement • Ask them to answer their own question based on your response “You’re going to want to pay attention, because I’ll answer once, then ask you what I said.” • Develop a mantra to assist with coping skills, for ex. “Mom will always take care of me”, “Mom has never let me go without a meal”

31. Created by a PWS Warrior Mom prior to a family vacation

32. Replacement Behaviors • Don’t expect to simply eliminate a behavior, but take steps toward the desired outcome. • Consider, what is an intermediate step you can live with that will still meet their need? • Examples:

33. Prevention of Confabulation (i.e. telling untrue stories) • Emphasize that individual needs to tell the truth so they can be kept safe • Use story telling abilities to write stories • Teach alternative statement – “I wish . . .” example • Teach “story” v “truth” • When you suspect this is done to avoid punishment for behavior, especially if related to food incidents, emphasize that when they tell the truth there is no or a less severe consequence because safety is the number one priority.

34. Practical Reactive Solutions General rule of thumb – Respond based on function

35. Rule out Medical Causes • When behavior change is sudden and usual techniques are not working, rule out any medical cause. • Overall examination by family doctor. Stress that even though the individual does not have fever/vomiting/pain/etc., a full exam is needed based on behavior change. PWS changes the presentation of usual symptoms. • Consider a sleep study. • In PWS, a “soft belly” upon physical examination does not always mean a clear bowel. • Trust your “gut.” Be persistent if there are tests the doctor doesn’t want to order because of lack of symptoms.

36. General Reactive Solutions • Maintain calm and neutral tone of voice and facial expression. • This is especially true in response to confabulation. • Offer “truth or story” and then move on. • If a set reward system is in place, the consequence of earning less/nothing is what is important. If we give too much attention we undermine the power of the system. • “Let it go!” • Develop your own mantra / saying to remind yourself what to do. • Limit words said to student. Use gestures, pictures, written words instead of spoken words. • This is when visual supports come in handy • When talking to individual, state what is expected, “Put your hands in your pockets,” ”Ask for a break,” rather than “Stop hitting,” “No biting.” • Phrasing the expectation in the positive “plants the idea”. When we say what not to do, they likely do not know what to do instead.

37. General Reactive Solutions con’t • Limit number of people interacting with or around individual • Remove items that can cause harm to individual or others. Do so quietly. • As long as individual is safe, “wait him/her out” • Once an individual reaches the “acting out” stage where they are not responsive to redirection, our job is to maintain safety and welfare. The goal is not about “winning,” bur rather making sure the episode ends so all are safe. • After the episode, think about how this can be avoided in the future. • setting events, function, skill deficits, medical cause

38. Thank you for your attention!