Freaking Out? That’s what this workshop is all about

1. Freaking Out?That’s what this workshop is all about Ursula Bowling, PsyD

2. Introductions • Who I am • Class Guidelines • Agenda for the Day • Your approach to the day • Try it on for size

3. What is Your Goal for Your Child’s Behavior • SHORT TERM: • LONG TERM:

4. This is Hard Because It’s Hard, Not Because You’re Doing it Wrong(The brain science of Down syndrome and behavior)

5. Prevalence • About 30% of children with Down syndrome have a diagnosable behavior disorder • This is 3 times the rate of children in the general population • There are specific brain and learning factors that contribute to these challenges

6. Memory and Learning • All learning is the process of moving information from our short-term memory (15-30 seconds) to our long term memory, where it is permanently stored • These functions occur primarily in the temporal lobe and hippocampus • Children with Down syndrome do not transfer information easily from short to long term memory • This is why our kiddos need so many repetitions to learn information: • Reading, tying shoes, talking, counting, etc. etc. all take longer to learn, and our kids can get there • The same is true for learning appropriate behavior and inhibiting problem behaviors • 1000 trial learning

7. Executive Functioning • Frontal Lobe Deficits • Implicated in challenges with executive functioning, inattention, and a tendency towards perseveration • Allow us to plan, keep track of, and complete multistep tasks • Helps us inhibit impulses that derail us from goals • Impacts processing speed • Lowers frustration tolerance • Dr. Barkley – Frontal lobe deficits are “not a disorder of now knowing what to do. It is a disorder of not doing what you know.” • IN ALL PEOPLE, THIS PART OF THE BRAIN CONTINUES TO GROW AND DEVELOP WAY INTO ADULTHOOD

8. Probably Obvious, But Needs to Be Said • Children with Down syndrome are at increased risk for: • Vision impairment • Hearing loss • Sleep problems • Endocrine issues • GI Issues • All of these things can have a profound impact on behavior and need to be checked out

9. LANGUAGE • Receptive verses Expressive Language • Receptive – the ability to understand language • Expressive – the ability to say what you are thinking • There is a huge gap between receptive and expressive language in most kiddos with DS • This is super frustrating! • Anything you can do to reduce this gap is a gift to your kiddos and family • Speech therapy • Sign • Assistive Technology • As communication (not necessarily speech) improves, behavior often improves as well

10. Visual Processing • Parietal Lobe not/minimally Impacted • Strong visual processing skills • IQ testing tends to find our kids do much better at visual tasks then at language tasks • Verbally presented information will not go as well as visually presented information • ROUTINE, ROUTINE, ROUTINE • Visual cues/schedules/reminders • For young children – sign language!

11. Social Functioning • Strong Social-Emotional Radar • Our kiddos tend to be very sensitive to social responses (the style, if not the words of communication) • Desire to be connected and seen • “The child with DS often does not process the actual words. Instead, she only processes the social response. So, the effect is as if the adults’ words are said in the voice….of the Charlie Brown movies, ‘Mwehmwehmweh.’ In other words, the child hears the sound, but the words are meaningless.” – Stein • Big reactions are exciting! • People with DS are “exquisitely sensitive to losses,” far beyond that of typical developers. If behavior is suddenly flaring up, check for losses • Mirror Neurons • Emotional regulation is learned through modeling

12. Emotional Regulation • Is a learned skill (just like every other!) • Is co-created - Mirror neurons • Requires “gas in the tank” for us and our kiddos

13. One Last Factor • Expectations • A huge range of research shows that children tend to adapt to the expectations of those around them • Children with Down syndrome often experience low expectations from caregivers • It is going to take longer, but your child can learn to manage their behavior well • Part of our work as parents is helping to set expectations for our children with other people who interact with them • Church • School • Activities • Extended Family

14. Speaking of Emotional Regulation:Self-Care

15. I Thought This Was About My Kid? • Emotional Regulation & Impulse Control are learned skills • The good and terrible news is that our kids learn these skills primarily from their interactions with primary caregivers • 1000 trial learning is a lot of trials - • Caregivers of kids with DS are at increased risk for burnout because this is hard work! • You can’t pour from an empty cup • None of the parenting principles we are going to talk about are rocket science, but consistently implementing each of these tactics is hard work and requires emotional margin • Ever notice your kids act worse when you’re under stress?

16. You Need Strategies for Keeping Your Cool • ORANGE RHINO by Sheila McCraith • If you struggle with anger/yelling at kids I cannot recommend this book enough • LOWER YOUR STANDARDS ON EVERYTHING BUT LOVE. REPEAT. REPEAT. REPEAT. • No one goes to therapy because they ate a lot of cereal for dinner • Self-care is not one more thing to fail at. It is an essential component of parenting well. • Self-care = anything and everything that increases your sense of well-being/calm/peace • What are your early warning signs that you are under stress/growing impatient? • What are the moments when you’re most likely to “blow your stack?” • What are your pre-emptive strategies? • What are your in the moment strategies? • Where can you go? • Who can you call? • How can you create margin?

17. Daniel Siegel and Flipping Your Lid

18. The Best offense IS A GOOD defense

19. ROUTINE, ROUTINE, ROUTINE • We live in a fast paced and chaotic world • Our kiddos with DS feel this acutely • Routine organizes our world, reduces anxiety, and enhances cooperation • A Good Routine • Is co-created • Is easy to understand • Is visual • Includes work and rewards/fun • Balances predictability and flexibility

20. Increased Autonomy/Independence • A sense of control reduces frustration and power struggles • People want to feel capable and independent • This poses some challenges for our kiddos, but can be achieved • What are tasks your child can do to contribute to your household? • Sidebar: The important part here is that the task feels manageable and that your child feels proud of contributing. The actual effectiveness of the activity is secondary. • What are things they can do for themselves? • Dressing themselves • Caring for a pet • Helping make lunch • How can you modify or adapt the environment to increase your child’s sense of independence?

21. Increasing Communication and Choices • Increasing communication and choices • Choices all the time • Strawberry or grape • Now or in 2 minutes • Blue shoes or red • Skirt or shorts • Play a game to see how many choices you can give in a day • Our dinner meltdown/sampler platter story • Give your kid the words – you want the juice. Gradually up expectations as speech improves

22. Let’s Talk through a Morning

23. Increasing Autonomy/Choices Choices I Can Give my Child Starting Now 1. 2. 3. Ways I Can Allow for Increased Autonomy 1. 2. 3.

24. Building a Strong Relationship • Kids who feel secure behave better • Makes deposits in the emotional tank • Teaches emotional regulation/social interaction • Reduces frustration/irritability • Baumrind’s model:

25. Special Time • Adapted from Parent Child Interaction Therapy • 10 minutes daily • Same time every day (routine time, not clock time) • An activity that is not a board game you both enjoy and where you don’t have to micromanage • Coloring • Blocks • Play-doh (you know your heart) • Mr. Potato Head • Duplos, MagnaTiles, etc. • Do activity with your child, without advising your child on how to do it • We should not be able to tell who made/built what – this isn’t art school • NEVER TAKE SPECIAL TIME AWAY AS A CONSEQUENCE FOR BAD BEHAVIOR

26. PRIDE Skills • PRAISE – Make it specific • “I like the way you’re putting the mouth on the potato head.” • “You’re working so hard to balance the block on that tower.” • NOT “Good job.” or “You’re a great kid.” • REFLECTION – Be a fantastic parrot. Reflect back everything your kid says. • IMITATION – • Do what they’re doing. • Follow motions • Use same colors or building choices • DESCRIPTION – Pretend you’re a sports commentator. Describe the situation in as clear a way as possible • “You’re putting the blue eyes on the potato head.” • “You’re using the red crayon to color the tree.” • “That is some fast coloring.” • ENTHUSIASM – Use your most excited voice

27. Pride Skills Continued • Avoid during special time: • Correcting inappropriate behavior (unless it’s a safety issue) • Actively ignore instead • Talk about what you do like • Instead, stop Special Time when these behaviors occur until they stop, or for rest of day if it’s a safety issue. • Questions • Direct or Indirect • This allows child to lead • Criticism • Sadly, this does not decrease bad behaviors • It may actually increase them • Commands • This is not the time for commands • Can create power struggles

28. APPLICATION: How could you implement special time in your house?

29. Play Games – All Sorts • Games are one of the best ways to teach emotional regulation and social interaction • For young children: • Nursery rhymes • Rolling a ball back and forth • Patty Cake • Peek a boo • For young elementary school kids • Red light green light • Simon Says • Tag • Hide and Seek • For older kiddos • Board games • Sports

30. Application: What is a game or activity YOU BOTH THINK WOULD BE FUN that can do with your child to teach emotional regulation/self-control?

31. Looking Deeper: Honoring the Impulse/Need

32. Honoring the Underlying Impulse/Need • We want our kids to know how to get their needs (and even wants) met • Emotional vocabularies promote emotional regulation • So much challenging behavior is an inappropriate way to get a legitimate need met • Let the kiddo borrow your words: • “You are feeling __________________ because ___________________.” • Validate the need/want/feeling EVEN IF YOU ARE SAYING NO • “You love cookies. I love cookies too. We’re all done eating sweets, but I can cut you an apple.”

33. Honoring the Impulse/Teaching the Skill • Think through for yourself what an APPROPRIATE way of expressing the need would be • Operationalize your “policies and procedures” • Teach these skills over and over and over again in moments when the behavior is not a problem – make it a game • For bigger kids, it can be helpful to co-create a plan for these moments • Practice/Do overs are an effective discipline • “I can’t help people who ask me by yelling. Say cookie please instead.” • You slammed the door. Please close it gently three times. I can help you. • IT IS OKAY TO HELP – Your goal here is for the kiddo to be successful and practice a skill, not to have them feel bad.

34. Application: What’s an annoying behavior your child engages in to try to get a legitimate need met?

35. Application 2. What would you like them to do instead?

36. Application: • What fun activities can you do to teach this skill? • What method can you use to “practice” the skill when things are not going well?

37. “When your not sure what to do, do what’s best for the relationship.” - Dr. David Stein

38. EXPECTATIONS AND INSTRUCTIONS

39. Setting Expectations • Do you know what your child should be doing? • If you don’t, they don’t • Our kids need a clear sense of what they should be doing – free time frequently equals trouble • Our kids tend to like helping and connecting – maximize this • How can they be involved in chores/tasks of daily life • Think about the jobs you do and easy ways you can involve them • Having some quick, not super messy go to activities can be really helpful. • “The busy bag.” • A cabinet/storage area with just a couple rotating toys • Minimizing opportunities for problem behaviors

40. Setting Expectations • The Daily Plan • Let your child know what is happening each day in big picture • Let your child know what to expect and what is expected of them in each setting • “Let’s talk about expectations.” • Stated clearly • In the positive • E.g., instead of no yelling say we will use our whispering voices • Start doing this before you think your kid understands you • Think through environmental supports • E.g., Instead of don’t touch anything, can you please hold my book • REPETITION IS THE MOTHER OF LEARNING

41. Expectations, Cont. • Daily schedules – make it visual • For stressful/aversive experiences, lay out first/then set up • “First you will go to the doctor and they will look in your ears. Then we will go eat a doughnut.” • Social stories and books for particularly challenging circumstances • If it is a challenging day, lay that out ahead of time & reward parts of story • http://www.johnson-center.org/downloads/pdfs/blood-draw.pdf

42. Application • How can you create a daily schedule/plan that improves clarity around expectations? • What is a situation/place where you tend to experience problem behaviors? • What are your expectations for that situation? • Must haves? • Would be nice? • How can you communicate those effectively? • What environmental supports could you provide?

43. Principles of Good Instruction • Clear • Simple – no more than one instruction said in one simple sentence • Get close and low as you give • If/then (hold up fingers) • Affirmative/positive • “keep your hands in your pockets, please” or better yet “can you please hold this for me” versus “don’t touch that” • Give choices • “do you want to put on pink or purple pajamas” • “do you want to brush your teeth with mint or sparkle fun” • Count to 10 to give them a chance to respond well

44. APPLICATION You want little Johnnie to get ready for swim lessons, so you yell from the other room, “it’s time for swim, get ready.” When you come in, Johnnie is still playing, so you raise your voice and say “I told you it’s time for swim.” Johnnie just stares. What could you do to create better instructions in this interaction?

45. PRINCIPLES OF BEHAVIOR

46. Discipline • It means teaching (from Latin Disciple) • THE GOAL OF DISCIPLINE IS TO TEACH YOUR CHILD HOW TO APPROPRIATELY BEHAVE AND GET THEIR NEEDS MET • It is not • Punishment • Guilt • Shame • Etc • Ask yourself – what is the function of this behavior? • HINT: It is not to make your life terrible

47. The ABCs of Behavior • Antecedent • What happened right before the behavior? • Behavior • Consequence • What happened right after the behavior? BEHAVIOR IS MAINTAINED BY ITS CONSEQUENCES • Ask yourself: What is the function of the behavior? • Escape? • Avoidance? • Attention seeking? • Sensory stimulation? • Access to tangibles?

48. Reduce Inadvertent Rewards • Tommy is frustrated and overwhelmed by his math homework, so he hits his sister. He gets a timeout. • How is the consequence of this behavior maintaining the behavior? • Susan screams when she wants a toy. Her sister is watching a show, and though annoyed, hands over the toy. • How is the consequence of this behavior maintaining the behavior? • Janet is frustrated that other kids are talking to each other and not her, so she throws a kid’s backpack in the street. All the kids yell and shout about it. The teacher comes over. • How is the consequence of this behavior maintaining the behavior? • Freddy is tired and bored. He pulls mom’s hair, and then she yells, spanks him, and then gives him a hug. • How is the consequence of this behavior maintaining the behavior? • Roger cannot stand peas for dinner, so he throws his plate and gets out of the kitchen. • How is the consequence of this behavior maintaining the behavior?

49. Problem Antecedents • Observe if there tend to be certain events/circumstances/feelings leading up to a problem behavior? • Overstimulated? • Tired? • Hungry? • Frustrated? • Rushed? • Feeling misunderstood? • Used up all their energy/good behavior on a difficult task earlier? • What can you do to reduce those antecedents?

50. Reduce Inadvertent Rewards • Ask yourself- • What tends to happen immediately after the problem behavior? • Where is the payoff in this consequence? • How can I eliminate/reduce the payoff?