Making Camp Work for Campers with Autism

1. Lynn Swedberg Sally DePalma Making Camp Work for Campers with Autism United Methodist Camp and Retreat Leader’s Gathering January 29th, 2013

2. Introductions • Speakers • Lynn Swedberg – occupational therapist and disability consultant through GBGM/ UMCOR Health • Sally DePalma – mother, disability ministry director, pharmacist • Participants: why are you here and what do you hope to learn today?

3. Objectives • Develop a system to communicate with parents and screen potential campers for best fit. • Discuss typical characteristics of persons on the autism spectrum and ways to adapt your programs to help them succeed. • Describe components needed to prepare campers, staff, and the camp environment for a successful experience.

4. Demographics • One in every 88 children • In boys: one in every 54 • In the US, a child is diagnosed every 20 seconds What are you seeing at your camp? • Campers • Staff • Future for kids with ASD • How can camp make a difference?

5. Person First Thinking • Autism doesn’t define the person, but is one aspect of their life • Look for the strengths and build on them • As we look at common characteristics of persons on the autism spectrum, be thinking of how these may affect participation in typical camp experiences at your camp

6. What is a “Spectrum” disorder • Range of characteristics, from mild to some that profoundly impact functioning • Each person is an individual and may or may not have specific characteristics • The individual can make functional gains with intervention and maturation • Assessment difficult until language or communication established – always assume competence!

7. Characteristics Motor Cognitive Social Interaction Communication Stereotypic Behavior Anxiety Sensory

8. Language & Communication Differences • May have difficulty processing auditory & visual at the same time • May take longer to process what is heard, or only hear part of the sounds • May understand but not speak, or speak but not understand what they are saying • Doesn’t understand abstract concepts, e.g. jokes and sayings • May repeat speech (echolalia) Communication

9. Challenges in Social Skills and Interaction • Doesn’t usually make eye contact; may stare • Difficulty with taking turns and reciprocating • Can’t read emotions or facial expressions • Has difficulty developing typical friendships • Can’t read social cues or predict outcomes • Tends to avoid touch, cuddling • May have difficulty with appropriate boundaries of personal space/ time Social Interaction

10. Unusual Behavior Patterns • Unusual play and use of toys, e.g. lining up • Lacks variety and spontaneity in play • Focuses on part of object versus whole thing • Unusual attachment to an object or toy • Narrow but strong range of interests • Stereotypical behavior, e.g. spinning object, flapping hands, bounding • May exhibit self-injury • Overall, behavior is “quirky” Stereotypic Behavior

11. Strengths • Many children with autism have normal intelligence • Good rule followers once they learn the rules • Often curious how things work • Non-judgmental • Won’t lie, cheat, or tattle • Usually want to learn how to make friends and interact with others • Contribute a different perspective to group process

12. Common Challenges The following traits are not used to diagnose autism, but some or all of them may be present in an individual on the autism spectrum: • Sensory processing differences • Motor challenges • Cognitive difficulties • Anxiety and fear

13. Sensory Processing Differences • Has difficulty filtering input • May be very sensitive to flickering lights, sounds, smells that others don’t notice • May overreact to touch and texture, e.g. have difficulty tolerating many types of clothing • Even everyday levels of stimulation may cause overload and anxiety • May not react to loud sounds • May seek or avoid sensory input Sensory

14. Motor Challenges • May present as clumsy • Often has poor awareness of body and where they are in space, e.g. bumps into things • May have to watch own feet on uneven ground • May have poor balance and low core strength • May walk on toes Motor

15. Cognitive Difficulties • May have decreased flexibility of thinking • Will have difficulty switching attention • Has problems organizing and planning • Often cannot generalize information • Poor short term/ working memory • Difficulty categorizing and problem-solving • May have no fear of danger and not recognize dangerous situations Cognitive

16. Anxiety and Fear • Has difficulty regulating emotions • May be scared of unusual things • May have difficulty going to sleep or unusual sleep patterns • Has a strong need to predict and control the situation and avoid change – craves routine and may be upset by even minor changes • Fear is the main emotion: the fear center of the brain is three times larger than in a typically developing child Anxiety

17. Application & Screening Process Assessing what will make a successful experience FL

18. Screening • Given all this information on characteristics, what would you need to know to determine whether your camp could meet the needs of a potential camper who has autism spectrum disorder? FL

19. Gathering Vital Information Know Your Camper • Initial phone contact from parent • Parent complete application forms • Camp makes follow-up phone interview with parent/guardian • Allow time for both parties to process info • Optional: Visiting the camp • Make a decision

20. Initial Phone Contact • How would you characterize where child is on the spectrum? • Is coming to camp something your child desires? • Has your child been away from home before? • Is your child verbal? Ambulatory? • Can your child care for themselves independently or with minimal assistance? • How are your child’s social skills? • Does your child wander?

21. Initial Phone Contact • How does your child react to new situations/people? • Does your child have diet restrictions? (can kitchen accommodate?). • Does your child have behaviors that may interfere with the camping experience for himself or others? • Will your child participate in group activities? • Does your child sleep through the night? Tell me about their bedtime routines.

22. Camp Application: Obtaining Key Information Consider modifying applications for campers needing extra support. Important to elicit info • Sleep habits…sleep through the night? Wanders? • Can dress/toilet self? Needs verbal cues? Needs minimal/full assistance? • Unusual fears? • How does camper communicate? (speaks clearly, speech difficulties, ASL.)

23. Camp Application • Sensory issues? Touch, sound or other environmental triggers (e.g. sand) • What motivates your camper? • Idiosyncrasies? • How does parent deal with the camper’s behaviors when they are stressed? Can camper become physically aggressive? (Some camps ask for behavior plan or IEP)

24. A Parent’s Perspective What do families who have children with disabilities look like? • 80% of marriages involving a child with a disability end in divorce.  • Families living with a member with a disability had a lower median income and are more likely to receive earnings from Social Security and public assistance (Census 2000…no disability data in the 2010 Census).

25. A Parent’s Perspective Being sensitive: What might a parent of a child with a disability be experiencing?  • Exhaustion • Guilt • Hopelessness • Frustration • Isolation • Insecurity • Fear • Sadness/mourning • Stress

26. Your Best Resource Understanding a parent’s perspective and fostering good communication will help lay the foundation for a successful camping experience

27. Impact: Ministering to the Entire Family • Camper • Parents • Siblings FL

28. Preparation is Everything • Suggest a pre-camp visit if possible • Send a social story specific to your camp • Have a picture schedule board of daily activities • Ask parents to send along favorite items to help camper cope and transition • Provide simple accommodations such as headsets and earplugs.

29. Recruiting • Do you need to have special qualifications to be a volunteer? •  Where can volunteers be found? • Churches within your area or conference. • Local universities. • Youth at local high schools.

30. Training Staff What does training look like: From awareness to intensive in-service • Disability overview • Disability etiquette • Behavioral intervention • Safety protocols • First Aid training • Hygienic and daily living care FL

31. When Camp Isn’t a Good Fit If camp isn’t equipped or camper doesn’t meet criteria what are other options? • Disability camps (have referral list) • Weekend/ family camp • Day camp • Plan for the future – keep in touch • Maintain hope

32. Environmental Preparation • Emphasize safety and assess environment for potential dangers • Decrease clutter • Find alternatives to florescent lights • Explore sound-dampening measures, e.g. in the dining room

33. Communication Strategies • Post visual (pictures and words) schedules and signs for the benefit of everyone • Build in flexibility and approximation • Announce transitions – • 5 minute warning • Use a visual timer LS

34. Communication Strategies • Get the camper’s attention first • Use short, simple directions • Break tasks down into 1-2 steps at a time • Be concrete- say what you mean • Limit questions • Pause and wait for a response • Don’t expect eye contact • Incorporate simple sign language

35. Sensory Strategies • Avoid light, unexpected touch • Offer sound-dampening headphones • Reduce glare- tan paper, sunglasses, visor • Rubber exercise bands • Occupy the hands – “fidgets” • Provide tasks – sweeping, carrying or holding things LS

36. Sensory Strategies For sensory seekers, restless kids • Pushing, carrying heavy objects • Sand play – sensory boxes • Swings • Mini-trampolines • Vibrating toys • Rhythm instruments • Gym balls or air cushion seats LS

37. Creating a “Safe Place” • Portable tent with squishy air mattress, sleeping bag, weighted snake toy • Keep a table covered with tablecloth (like a fort) in adjacent room

38. Setting up a Sensory Room Two ends of sensory room at University United Methodist Church in San Antonio How could these elements be built into a camp setting and look more like a natural part of camp? LS

39. Sensory Wall Sensory walls can be designed to communicate faith stories Textured mural at St. James U.M.C. in Tampa Textured carpet mural at University U.M.C . in San Antonio LS

40. Calming Strategies • Rocking chair • Breathing techniques • Firm pressure, e.g. push down on shoulders, push against feet • Human “sandwich” between cushions • Weighted blanket • Calm down bottle • Apply lotion

41. Behavior Strategies • Remember that behavior communicates a need • Stay neutral and calm • Model and praise positive behavior • Tell them what to do, not what not to do • Be proactive • Look for cues: illness, overstimulation, fear, needs • Play detective- what happened just before?

42. Behavior Strategies • Teach self-awareness – taking “temperature”

43. Creative Programming You may have great success with: • Art • Drama • Dance • Music • Group problem-solving • Incorporating animals • Finding new ways to play familiar games • Building on the campers’ interests FL

44. Meeting the Need • Aim for inclusion; plan for diversity. • Understand the potential impact you can have on these camper’s lives. You are truly making a difference! • Recognize the benefits of all campers learning how to work and serve as a community of believers.

45. Spiritual Development I praise God because I am fearfully and wonderfully made (Psalm 139: 14) • Focus of camp is helping each camper feel God’s love, grow in relationship with Jesus, experience Christian community, and learn to serve others • Camp shouldn’t be “therapy” – your setting and your program are needed and can’t be substituted with a secular camp

46. Teaching Bible Stories • Use simple but age-appropriate words • Emphasize the most important points • Define abstract concepts • Draw/ find pictures to illustrate • Act out the story • Use rhyme and song • Use repetition http://canada.ntm.org/firm-foundations-resource

47. Teach Us How to Pray • Incorporate actions and hand motions • Write down prayer requests • Save an empty chair for Jesus FL

48. Each Child is a Child of God • Help me find and use my gifts and strengths • Focus on what I can do • Don’t try to fix me – be my friend • Challenge me and help me master new skills • Don’t take away my passion – expand it! • Speak to me, not about me • Love me unconditionally • My spirit doesn’t have a disability • Teach me how to be a disciple of Jesus

49. Leu gardens: Morten’s Poem Luscious palms that have enormous leaves Elegant fronds which I can tap as I please Unbelievably tall bamboo trunks thrusting up to the sky Great wonders of nature that make me not want to die Almost every plant imaginable created by God Realms of the miraculous, others just odd Delicate roses pleasant to sniff and to stroke Each one scented uniquely, giving me hope Now I realise we weren't meant to all be the same Surely there must be some place for me in life's game? By MortenCernoch, age 10, London, England Used with permission for this presentation only. Please contact Sally Depalma if you wish to use this poem in any form.

50. Questions and Discussion • Thanks for coming, and for your interest in this new frontier of camping! • Feel free to contact us for more information, and to share your successes and questions with us. We are all in this together, learning as we go. Morten C.