Perception is not just clear precise vision, it is the processing of what you see, what you make of something based on experience and context. Not everyone sees the same thing the same way, even processes information the same way.
I have something in common with Dr. Lucy Jane Miller, founder of the Sensory Processing Disorder Foundation and STAR Center, we both have seen the world differently. Her experience was in her early life as her carrier choices were taking shape, mine started later and is current in my life. We share seeing the world through a distortion, we have the same corneal disorder, Keratoconus. Because she went through a change in vision she was able to see her path more clearly and understand how distortion can play a major role in upsetting daily life. Mine is a nuisance that I try to ignore, my brain fills in the gaps of the blurry images and makes them understandable.
From her early stages of a Corneal transplant she experienced life using less of one sense and more of her others, a challenge for anyone. This is what brought her to learn about Dr. Jean Ayres and later study under her. Years later Dr. Miller would be spending her life helping those with sensory issues, ones that cannot be surgically corrected.
Keratoconus causes distortion in vision through a faulty cornea. Both Dr. Miller and I have seen un-clearly, yet our mind’s eye knew how to interpret fuzzy distorted information. We had experienced vision clearly early on and this experience is how our brains processed the information we received. With SPD it is nearly the opposite. Children, at first glance, appear clear and fit the concepts we have of how a young human is supposed to look. They come in various shapes and colors and different stages of toothlessness.
The fuzzy distorted picture comes from how these children appear to behave, this is where the picture does not match our mind’s eye of what we expect to see as a child. A child with SPD displays signs of physiological problems that are invisible to the untrained eye. Many of the children that Dr. Miller has worked with have moments of ‘normal’, where their surroundings are compatible with their sensory tolerance. When this shifts, the physiological symptoms appear. It is the disconnect between, what appears to be a child who should be in control of their behavior, and what challenges they present. Their world is one of clear images, but distorted processing, creating the physiological responses to an unclear mind.
Right now Dr. Miller’s big push is for SPD to be in the DSM (diagnostic Statistical Manual), here SPD can now be a formal diagnosis and services can then be more available. It will also open up opportunities for further research and increase education among professionals and educators. helping to bring awareness to what is causing the behaviors that seem to worry parents and educators the most.
Parents can have a hard time understanding what SPD is about, each child is very unique in their presentations and challenges. Each family has their own goals for interventions and what is will acceptable and what areas they feel need the most understanding. It is the understanding that is the biggest part for changes to take place.
Daily challenges for children with SPD can be minimized or exacerbated based on interaction they have with family, friends and school. A child will not, “out grow” SPD, they can learn to cope better and the physiological symptoms will decrease with good intervention and therapy. Dr. Miller hopes to educate parents and professionals about the difference between normal childhood mis-behaviors and what can be a symptom of regulation.
“People get confuse and think we are working with their sensory problems and that is the underlying reasons why they have problems in daily life, but we are not working with their sensory problems, we are working with their quality of life”
Quality of life, for the children and for their families. SPD effects all aspects of life, around every corner there could be a sensory challenge, a situation that is not compatible, putting more stress on an already challenged mind, then those physiological symptoms can bubble up. The first steps are to understand them, in their worlds at their level. Showing them you are trying to work with them can give them great comfort that they are not alone. Strategies to avoid escalation is part of the training and education done at the STAR center.
Those physiological reactions can look like aggression when really it is a child who is avoiding being touched by those around them. Flight can look like withdrawal, yet it is a symptom of a child who is over stimulated in an incompatible environment, or with an adult who is places too high demands for that child’s sensory abilities. The tendency is to look at the behavior and judge that child as making a choice, then asking the child to be responsible for this. They are not using all their brain functions, the lowest level thinking takes over when a child is stressed. This is the amygdala, where these physiological behaviors come from; blame the amygdale, not the child.
Dr. Miller understands that parents are looking for help and answers when they see their child is developing differently than other children. She is committed to understanding each child she works with, and each family getting the most education and support for their child’s future. It is through parents that we spread the information about SPD to our family and friends, to educators.
My path to occupational therapy for our child was from a mother of a classmate of our child. It is a difficult conversation to have with another parent, typically a parent who suggests having a child evaluated by an OT sees something in that child that they saw in their own. Each parent of a child with SPD who has been lost and looking for answers knows the relief and the hope when they discover what issues their child faces. Share your experiences, push for better understanding for your medical professionals and the staff members of your child’s school. Help your family understand that compassion will go much further than strict rules and harsh punishments.
Dr. Miller is hoping to get November Symposium attendees to think outside the box when they imagine the future for SPD. What is it that will move Sensory awareness into making sensational classrooms, that more sensory sensitive kids will find more compatibility in their lives and less sensory stress? Both parents and professionals will converge under one roof. There will be inspiration and communication. At the end of the weekend Dr. Miller hopes that there will be new approaches to awareness and education, as I say, start the “Movement” movement.
Knowing the uniqueness of a child’s sensory issues helps them cope with the world around them, gives parents greater bond with their children and allows for others to also benefit. A classroom that is sensory friendly for one child will positively affect the other children in that classroom. The mood will be calmer, the teacher will have more time to focus on academics, the sensory child less stressed, the classmates more accepting and the potentials for all students in that room will rise.
Many other disorders can blend and blur the lines of what is SPD and what is another disorder with a sensory problem. Dr. Miller points out that while children with Autism Spectrum Disorder, Asperger’s Syndrome and ADHD will usually have sensory issues, those are secondary. SPD is all alone, it is not a simple diagnosis and intervention needs to be done with a well trained professional. The goals are not to cure SPD, they are to help the person with the disorder learn to cope and deal with the stress and anxiety the disorder bring to the person. Sensory disorders can be debilitating, with intervention, education and understanding children will function, even flourish, in challenging situations, not at first, but in time.
“We must overcome the notion that we must be regular . . . it robs you the chance to be extraordinary” Uta Hagen
To join Dr. Miller at the upcoming Symposium, click here for more information.
Sensory Processing Disorder Foundation website is here . . .
Here is another article about an SPD event, click here.