In this 60‑minute video, Janice Agarwal, a Pediatric Physical Therapist, explains how children with PWS have decreased sensory awareness and how you can help your child with sensory integration. The session includes Q&A from participants in the 2021 FPWR Virtual Conference.
Click below to watch the video. If you're short on time, scroll down for timestamps to find the portions you're most interested in.
Presentation Summary With Timestamps
Sensory Integration for Children with PWS
02:43 Janice Agarwal Presents
Overview
- I’ve been working in pediatrics for about 35 years and in the last 20 years, I’ve worked with a lot of kids with PWS. My area of expertise is sensory integration.
- I have a child with PWS who is now 22 years old. We received the diagnosis at eight days of age so we were very blessed that I had seen many kids with PWS.
- We're going to talk about creating a sensory diet for your kids. It looks like 41 percent of today’s participants have children who are 0 to 6 months of age, 21% have children who are 7 months to one year, and 41% have children who are one to two years old.
- The optimal period to work with your children on sensory integration is between 0 to 2 years of age.
06:06 What is Sensory Integration?
- Every time your child moves, they have to both move and feel the movement so it’s important to talk with your therapists about how to integrate the sensory component.
- Our infants with hypomobility do not get all of the input they need, even beginning in utero, so we have to create that environment for them and give them the ability to move.
- Sensory integration is the process of using our senses to take in and organize sensory information for success in everyday activities. For example, when you touch things, it is being able to feel your hands move and the texture of what you’re touching.
- All children with PWS have some element of a sensory processing disorder, which means the brain has trouble receiving and responding to information that comes through the senses.
- Signs of this include an acute awareness of background noises; fascination with lights, fans, and water; a tendency to spin items or take things apart; coordination problems; unusually high or low activity levels; difficulty with transitions; and unusual sensitivity to sounds and smells.
- Sensory integration is foundational for the development of their motor skills and social behaviors, as well as the ability to accomplish more complicated learning tasks both in school and at home.
- The sensory integration areas we're going to study are the vestibular, the proprioceptive, the tactile, and the oral motor.
09:05 The Vestibular
- The vestibular starts in utero. It provides information about movement, gravity, and changing of head position.
- It also helps us to stabilize our eyes when we are moving and tells us if objects around us are moving or remaining still.
- We need to accurately process vestibular information in order to properly see, maintain posture, maintain balance, and learn protective or righting reactions.
- If our children are fearful that they're going to hit their heads when they fall, then they're going to stop trying to move as much.
- At three to six months, a normal child starts to learn forward righting reactions, at six to nine months they learn side to side righting reactions, and at 12 months they learn backwards righting reactions.
- Children with PWS experience delays in learning righting reactions, but we can work with them to get closer to the normal timeline.
- I have a child with PWS and I am a physical therapist so I understand that this can be a little overwhelming, but these are important things to be thinking about. It’s important to recognize your child is experiencing delays and that you can help them catch up.
- They need to go through the natural linear process of learning these things so it’s important to have a plan of action.
- The vestibular also helps us to calm down and regulate behavior.
13:26 Vestibular Issues
- Vestibular issues can cause an inability to use the eyes and hands together. When we are head righting, we are using our hands. This skill becomes foundational for the development of other skills as they grow up.
- Issues with the vestibular can also cause: poor balance, a difficulty paying attention and reasoning, avoiding movement or touch, difficulty maintaining alertness, difficulty organizing self and using self-control, poor understanding of spatial relationships, and poor auditory processing.
- Many children with PWS have a problem with auditory processing, which means that they sometimes have a poor understanding of what is said to them. Often this is because the environment around them requires too much of their attention.
- Auditory processing also impacts a child’s ability to pay attention.
15:10 What Can You Do Now?
- Here are some things you can do now to help with sensory integration skills:
- Rocking, gentle bouncing, slow spinning in one direction.
- Rocking in a rocking chair or on a rocking horse.
- Walking, running, hiking, and swimming.
- Bouncing on large balls and mattresses.
- Rolling, roughhousing, wrestling, and somersaulting.
- Spinning on a swivel chair, “Sit and Spin” toy, or tire.
- Learn to rock your child as much as you possibly can.
- If they don't seem to like it and start to cry, their vestibular issues may be more acute. In that case, I recommend doing a little bit of rocking and when they start to cry, pick them up, and give them a cuddle. Then tell them we're only going to do this a few more times and proceed with rocking.
- It is very important because our bodies crave the vestibular attention. Babies in the normal spectrum are constantly rolling to grab things. Little children love to sit and spin until they fall down and then they get back up and do it again.
- Hypotonia in children with PWS causes them not to move as much, but their bodies need movement. This means we need to create an environment that allows them to move.
- Slow rocking also helps when they get upset, even as they get older, so having a rocking chair is a good idea.
18:00 Proprioception
- Proprioception is a system that gives you information about your position, movement, and balance. It relies on information from other systems, including the peripheral and central nervous systems.
- Proprioception tells you where your arms are or where your head is. The ability to move and the feeling of that movement comes from our joints.
- Proprioceptive input provides unconscious awareness of body position. It tells us about the position of our body parts and their relationship to each other, other people, and objects. It also communicates how much force is needed for muscle contraction and allows us to grade our movements.
- Problems with proprioception can manifest as: clumsiness, the tendency to exert too much or too little pressure, tantrums where they throw themselves on the ground, seeking enclosed spaces for boundaries, hugging tightly, poor writing skills, difficulty coloring in lines, and difficulty stopping activities.
- Treatments include: weighted items, clothes, or blankets; carrying heavier items; pushing and pulling items; crawling through tunnels or boxes; hanging; jumping on trampolines or mattresses; pounding nails; rolling play dough; tight clothes that help them feel their bodies; getting them in water; and “Tug of War” with blankets.
23:18 Tactile
- The tactile system is our primary protective system. It includes our skin, which gives us the feeling of our body in our environment.
- Sensory dysfunction is often detected in this area because it is exposed to the most abuse, but it can be resolved at a young age so that it doesn’t manifest as skin picking at an older age.
- Tactile input provides us with information about light touch and deep touch, pressure, vibration, temperature, and pain. Children with PWS struggle with all of these inputs.
- Feedback from this system contributes to the development of our body awareness and motor planning abilities.
- The tactile system distinguishes between light touch and deep touch. When you lightly touch a child with sensory issues, it is uncomfortable for them. Instead, it is important to touch them deeply. As opposed to touching the skin, think about touching the bone so they can feel it and start to learn light touch.
- Problems with light touch can manifest as an insensitivity to cuts, pain, and temperature; a dislike of having teeth or hair brushed; a dislike of wearing hats or gloves; flicks or shakes of the hands; chewing on lips; picking at skin; a need for extra personal space; sloppy eating and dressing; intolerance of new clothes or tags; insect bites may make them scratch until they draw blood; and touching activities such as finger painting or glueing items may be uncomfortable.
27:28 Treatments
- Treatments for issues with the tactile system include: brushing, rolling, and deep massage, as well as deep pressure and joint compression.
- Massage is very important: massage their heads, hands, feet, ears, backs, etc. Massage babies’ gums. It helps them build body awareness.
- As they get older, other things that can help include: dress-up boxes, hand and foot massages, hand painting, brushing and petting pets, and sensory toys.
32:00 Oral Motor
- Eating is the most sensory intensive activity and we need to use it to regulate our children. The oral motor system can help a child calm or alert themselves so they can play and interact with peers.
- In the 0-2 age range, a lot of children with PWS don't like to bring things up to their mouth or suck, but we have to encourage them to do so because it teaches visual skills, textures, and enables learning.
- The oral motor is important for multiple reasons:
- Sucking promotes trunk flexion.
- Blowing promotes trunk extension.
- Biting promotes jaw, neck, shoulder, and pelvic stability.
- Crunching and chewing promote balance, stability, and mobility in the jaw, neck, shoulder, and pelvis.
33:00 Treatments
- Treatments include:
- Blowing bubbles or whistles.
- Learning to make noises with their mouths.
- Introducing cold or warm items, such as frozen grapes, popsicles, or bananas.
- Introducing tougher food items, such as chewy bagels, dried fruit, and fruit roll-ups to strengthen the jaw
- including crunchy food items in the diet
- adding foods with strong sour or tart flavors to the diet
- providing foods that can be sucked, such as hard candies, citrus fruit wedges, lollipops
- Sucking is a natural way for infants to soothe themselves and children with PWS need to be taught how to suck so they can regulate their behaviors.
36:07 Managing Behavior
- If your child has a tantrum, let them have the tantrum, but don’t give in to the demand. You need to teach your child that their actions have consequences even at a young age.
- Sometimes our intervention in the middle of a behavior cycle makes things worse. Try to stay away from negative reactions and use positive reinforcement to encourage good behavior.
37:42 Conclusion
- All children with PWS are born with abnormal tone and have sensory integration deficiencies.
- The deficiencies involve the Oral Motor, Visual, Tactile, Vestibular, and Proprioceptive systems.
- In the 0-2 age range, these activities are important:
- Oral Motor - encourage sucking
- Visual - teach them how to bring things up to their mouth and learn distances
- Tactile - massaging, deep touch, and wearing tight clothes
- Vestibular - rock and spin
- Proprioceptive - move them around a lot
- Our children are delayed, but it’s important for them to still follow the natural course of learning activities. For example, do not move a child into a standing position if they are unable to move from the ground to a seated position on their own, because the muscles around the spinal cord need to be sufficiently developed to support them being upright.
- With intervention, all of our children with PWS can grow up to have fulfilling and active lives.
- Sensory diets should be carried over from therapists to parents to caregivers. They should be based upon observations and treatment team member collaboration.
- Identification of the correct diet requires the correct recipe and will change over time.
- In the 0-2 age group, you should have a speech therapist for oral motor and feeding skills, an OT for sensory skills, and a PT for core stabilization and sensory work. All of your therapists should include sensory skills as an area of focus.
- Let's have fun because our kids are the greatest.
42:08 Q & A
