Sensory Integration Therapy for PWS [2019 CONFERENCE VIDEO]

Most people with PWS struggle with sensory processing, either seeking or avoiding sensory input. In this 54-minute video, occupational therapists Ashley Waguespack and Jessica Boudreaux explain the sensory issues common to PWS, then dive into sensory integration therapy. They describe in detail activities and solutions to implement at home, including fielding questions during an in-depth audience Q and A. Click below to watch the video. If you're short on time, scroll down for time stamps to find the portions you're most interested in.

Timestamps and topics are provided below the video for easy viewing of specific content. A partial transcription of the session is also available below.


Presentation Summary With Timestamps

0:30 Definition- what is sensory integration?

0:58 Our [7] Senses

  • Tactile sense: it tells us whether we are actively touching something or passively being touched.  It helps us identify between threatening and nonthreatening touch sensations.
  • Vestibular sense: provides information regarding gravity and space, balance and movement, and our head and body position in relation to the surface of the earth.
  • Proprioceptive sense: provides information through our joints, muscles, and ligaments about where our body parts are and what they are doing.

3:48 Dysfunction in Sensory Integration

  • Dysfunction occurs when the brain inefficiently processes messages from the person’s own body and environment in one or more of the senses listed.
  • There has been little research done on Sensory Integration theory and its impact on the individual with Prader Willi, but the topics we will discuss are supportive of all individuals.

5:58 Praxis – how we interact with the physical world

  • A uniquely human skill that enables us to interact effectively with the physical world.  It’s the ability of the brain to conceive of, organize, and carry out a sequence of unfamiliar actions.

6:28 Clinical Picture of Dyspraxia

  • Clumsiness
  • Disorganization
  • Longer than average to learn new motor tasks
  • Frustration, low self-esteem
  • Doesn’t know how to conceptualize the motor execution

7:32 Intervention Approaches for Learning

  • Bottom-Up Approach: remediation of underlying neurological mechanisms to improve functioning
  • Top-Down Approach: emphasis on use of cognitive attention to a task to improve function with no attention to underlying mechanisms

8:33 Arousal & Internal Rhythm

  • This is the baseline where all learning begins
  • Teach the child to be aware of their own arousal state
  • Be aware that working on arousal and internal rhythm can’t happen initially if the environment is chaotic
  • Don’t think that the child can control behavior if they are constantly in a state of high arousal

10:40 Strategies for Arousal and Rhythm

  • The Rocking Game: have the child rock a baby or stuffed animal to sleep in a small rocking chair
  • Make a Fort Game: use pillows, chairs, and blankets to help the child create a “hide away” that limits overloading sensory input
  • The Breathing Game: Find a quiet spot and have the child breathe slowly and fully while saying something rhythmical to themselves, such as “I am calm”
  • This is the Way We…this song has an organizing rhythm and can be used to incorporate many actions that provide heavy work for the child (stomp our feet, jump up and down)
  • Oral Motor Activities: Activities such as sucking, blowing, and chewing can help decrease a heightened arousal state
  • Yoga: these activities focus on breathing and positions that stretch the muscles and provide heavy work

14:50 Strategies to Develop Rhythmicity and Sequencing

  • Body Rocking: on a swing, therapy ball, lying over a therapy ball back and forth
  • Bouncing: on a therapy ball or swing with bungee
  • Jumping: up and down, on a trampoline, forward in a sequence of hoops, over ropes
  • Rhythm Sticks: use both hands to tap on a drum or therapy ball, alternate hands to beat the drum
  • Clapping Games: patty cake, clap in time to a song
  • Crawling Along: crawl over pillows or cushion path using same side or opposite side arm/leg movements

18:20 Sensory Strategies

  • What works for my child? When she or he is most calm or organized, what activity is taking place? Rocking, swinging, reading a book?

19:00 Calming or Organizing Activities

  • Deep pressure activities are almost always calming to a child, such as back rubs, hugs, lotion rubs
  • Slow, rhythmical, repetitive activities, such as rocking or swinging back and forth, rhythmical singing
  • Having the lights low. Flickering or bright lights are arousing.
  • Set up a quiet, “get-away” area such as a tent or playhouse. This is a good place for calm down, not a place used as punishment.

19:57 Deep Pressure Activities

  • Bear hugs, back rubs, or body massages
  • Building a “sandwich” with your child in the middle of two bean bags, heavy blankets, or sofa cushions
  • Have your child wrap up tightly in a blanket
  • When your child is sitting, place a heavy blanket or weighted sock snake across their hips
  • “Steamroller” with siblings, where they take turns rolling over each other

21:05 Heavy Work Activities

  • Wash desks
  • Help arrange desks in classroom
  • Fill egg crates with books to take to other classrooms
  • Take chewy or crunchy food break
  • Sharpen pencil with manual sharpener
  • Carry books with both hands hugging to the chest
  • Staple paper on the bulletin board
  • Move books or packs of paper for the teacher
  • Use squeeze toys when sitting quietly

22:10 Proprioceptive Activities

  • Provide opportunities for “adult work”, such as digging, lifting, pushing, and pulling to give great amounts of input to your child
  • Pulling a wagon with weighted objects or a sibling
  • Games of tug-o-war
  • Wearing a weighted vest or belt

23:00 Vestibular Activities

  • Rocking chairs, gliders, rocking horses all provide calming, linear vestibular input
  • Playing on a scooter board to propel self
  • Swings are the most popular form of vestibular input.
    • Spinning will be the most alerting type of vestibular input
    • Linear movement will be the most calming/organizing input

24:00 Sensory Strategies for the Classroom

  • Heavy Work/Proprioceptive Activities
    • Carry books
    • Push chairs
    • Open doors for others
    • Wear a heavy backpack
    • Move a trash can to another location
    • Squeeze stress balls or fidget toys
  • Movement Activities
  • Sit in a rocking chair when reading or during floor time
  • Sit on an inflated air cushion placed on chair or floor
  • Help teacher hand out papers
  • Push your feet into theraband placed on chair legs
  • Take a stretch break after sitting for a long time
  • Breath deeply

27:33 Q&A

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Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.