Latham Centers Hits the International Press

April 7, 2015


Latham Centers prides itself in our international partners. Our PWS specialists understand that in order to make the largest impact in the global PWS community we need to reach past our US borders. Below, please read Patrice Carroll’s article in March’s People With Strength, the Prader-Willi Syndrome of South Africa’s monthly newsletter.

Sensory Processing

Sensory processing is how we respond to the information that comes to our brains through our senses. A sensory processing disorder is the brain’s difficultly receiving that information coming to it through the senses. Each of us struggles with sensory processing difficulties in some way to varying degrees. For example: some people struggle with crowds, some struggle with noise or tight clothing but the person with a sensory processing disorder reacts negatively or avoids those situations altogether.

Schools place children in classroom with loud noises or lights which are far too bright. We then look to the child to correct their behaviour when it is unwanted or otherwise negative. The truth is that some children simply feel itchy in some types of clothing. A child’s fidgeting is not always a result of ADHD, non-compliance or attention seeking as we often label them. In this example the child has a sensory processing difficulty and we should look to reduce their discomfort rather than using medication or using behavourial interventions to reduce what we see as disruptive behaviour. Of course in some cases children or adults do require medications or other interventions to reduce unwanted behaviours, but first we need to look at the basics:

-Are they comfortable?

-Can they see?

-Can they hear the background noises?

-Are they too cold or hot?

-Do they feel physically grounded to the floor or are they dizzy or off balance?

Because people with PWS are so good at compensating for that which they struggle they often go on for a long time before anyone picks up on the true issues. A registered occupational therapist can tell you if your child has needs in this area.

People with PWS do not always develop their senses in a typical way. This is a result of poor muscle tone with dysfunction of the endocrine system. Often it is not until they reach school age, that we see the struggles they are having. Early work with a registered OT can save a lot of time in meetings later on with teachers and administrators telling you that your child can’t seem to sit still or can’t focus, won’t follow directions or is disrupting the group. Before you let anyone tell you that your child needs medication or a special plan needs to be put in place, especially if that involves restrictions, ask yourself: is he comfortable? Is she grounded in space (not dizzy feeling like she’s tipping)? Does he feel constricted or not constricted enough? Does she always seem to bump into things; is he “clumsy” or tripping more than he should? Does she cover her ears even at the slightest noise? Is he only happy when he’s moving or is she fearful of any movements other than walking? These are all signs of sensory processing disorder and the great news is that there is a lot that you can do about it.

Types of Sensory Issues/Disorders:

Tactile people who need further development of their tactile senses often seek out or avoid contrasting textures. These will be kids who constantly rub the fabric of their clothes or furniture. The avoider will refuse to wear any clothing with tags or stiff fabrics. Tactile kids and adults will benefit from stress balls, sand or water tables, bubble wrap, small stones or rocks (careful for those that ingest objects), play dough, finger paints, etc.

Auditory people who react strongly to loud noises. Earphones that block out background noise can be extremely helpful in allowing the person to remain focused without becoming agitated by extraneous noise.

Proprioception this is the ability to sense muscle strength and position in space. People who need further development with this sense often appear clumsy or heavy footed. People will report that they often break objects by walking into them or use too much or not enough strength in picking up or moving objects. Using items such as weighted lap blankets or vests, small weights or bean bags will help improve this sense.

Vestibular this sense controls balance. I have personally seen marked improvement in some of the most problematic behaviours when I have focused on increasing vestibular enhancing activities. When our children feel more balance, less “off center” they appear to be calmer in different environments. People who struggle with vestibular sense often refuse to walk on any surface that isn’t perfectly flat, they often refuse to bend over which is sometimes mistaken for laziness but in reality they fear falling over. Any activity that promotes balance will enhance this sense, e.g. horseback riding, walking on a balance beam close to the ground (this will require someone holding their hand initially), yoga, learning to juggle and participation in most sports will be effective.

Oral any activity that involves chewing or intense flavours improves this sense. Gum chewing (sugar free) has proven to be effective for lessening teeth grinding, excess drooling and also improves digestion.

Interoception this is the sensitivity to stimuli inside the body such as body temperature and heart rate. Deep breathing and mindfulness activities are effective.

Olfactory this is your sense to small. Scents can be both calming and alerting depending on the need.
Visual people with PWS are often visual learners and can also become overwhelmed by too much visual stimulus. Using visual schedules as well as written schedules can be helpful. If the person becomes easily distracted or shuts down often try allowing them to wear a hat or visor they can pull down over their eyes when they want to “get away.”


What Specific Sensory Activities Are Useful?

There is no easy answer. It is specific to each individual’s preference. It also is dependent upon which behaviour one is trying to decrease. That being said, here are some ideas for sensory tools and activities that have had great results for different needs:

For the person who picks all tactile tools including stress balls, sand and water tables, silly putty, bubble wrap, chewlery (these are bracelets and necklaces that are designed to be chewed on), strips of material to shred and therabands. All of these also work well for decreasing agitation and increasing focus.

For daytime fatigue therabands used under feet so the individuals can bounce; scents that are strong such as citrus or patchouli; and all activities that involve bouncing, jumping or climbing.

Reducing agitation all activities that require muscles in a positive way such as lifting objects (not too heavy), sucking thick liquid through a straw, stretching, blowing bubbles or jumping.

Preparing for transitions we know that many children and adults diagnosed with PWS struggle with transitional times (before and after school or work, before bed, any time one activity changes to another). Counting, colouring, tapping or clapping to a rhythm or rocking can be effective in decreasing anxiety during these times.

Winding down calming scents such as lavender or sandalwood, deep breathing, a warm bath or band soaks. Due to poor muscle tone it is often difficult for the person with PWS to take an effective deep breath. Blowing bubbles or making a game of blowing a ping pong ball across a table can ensure that they are taking a deep breath.

It is always recommended that you consult an occupational therapist before starting a sensory program. After a consultant, you can experiment on what works best for your child. A rich array of sensory techniques can ease many of the typical behaviours seen in PWS as you and your child master long-term coping skills.

Your child does not have to live their life being uncomfortable or feeling out of control. Sensory integration as part of daily life will make an enormous improvement to your child’s quality of life. Always consult a registered occupational therapist before incorporating sensory integration but do it early and do it often. I have seen firsthand the transformation that takes place once we target and treat problematic areas.

Patrice’s Tip:

Remain calm. Your adrenaline is high, you are upset and if the incident was in public you are embarrassed and angry. Don’t let those emotions get in the way of the final goal of keeping your child calm and teaching the appropriate tools for preventing this in the future.


Submitted by Patrice Carroll
Manager of PWS Service

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