Disobedience or Disability?: An Essay on Sensory Processing Disorder

Disobedience or Disability?:  An Essay on Sensory Processing Disorder

by Mary Brandenburg and Tony Brandenburg

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Taking a shower feels like needles stabbing my head. 

The sound of that fan is making my ears hurt. 

I feel like I’m suffocating when you hug me. 

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In 1963 author and artist Maurice Sendak published Where the Wild Things Are. The story is now so engrained on the educational conscious that it is hard to believe that the book was initially panned, and then banned from many libraries ironically. It stands as a classic of children's literature. Besides Max, the boy in the wolf suit, Sendak established many other delightful, but somewhat naughty characters: Pierre who didn't care, the strong-willed Rosie. To this day, nearly fifty years later, parents still debate the merit and intentions of  Where the Wild Things Are- and of the author, as well as the response of the (fictional) adult in Max's world, who responded to Max’s behavioral outburst by sending him to bed without dinner.

Considering that the book is all of 388 words, it is a trump in the over intellectualizing and analysis of behavior by outsiders. Sendak himself would ultimately declare Max's behavior in very real, and very universal terms that any parent paying close enough attention could recognize. Sendak was amazingly astute in his observation of children for a person who had none of his own. (CHECK THAT) During his acceptance speech for the Caldecott Medal in 1964 Sendak stated that

 "… from their earliest years children live on familiar terms with disrupting emotions, fear and anxiety are an intrinsic part of their everyday lives, they continually cope with frustrations as best they can. And it is through fantasy that children achieve catharsis. It is the best means they have for taming Wild Things." (http://www.answers.com/topic/maurice-sendak#ixzz1o0DREdcx)

When an outsider is simply observing a child’s public behavior- especially the challenging ones- it may be difficult  for the observer to separate the behavior from the child. It may also be difficult for the observer to see that the behavior may be an desperate attempt  by the child to communicate, or  even to cope, and thus, it may also be difficult for an observer to step outside of their own world view or paradigm to see the entire picture- including underlying influences that may have set things in motion. How much easier it is to simply blame the child, or even the child’s parents for spoiling and not disciplining the child; to parent the right way, that is, the way the observer believes is the right way. 

When the casual observer is given a badge of distinction and observe from the position of educational power-the school- those casual observations are somehow given mor clout and disinction, and i the worst of scenarios, those schools can pin much more significant and damning of labels onto a child- labels such as oppositional defiant, or conduct disorder- and often do so without properly assessing a child for underlying problems, including neurological differences- but simply basing it on overt behaviors. The result is that instead of supporting the child, the outside forces in these positions work to tame the child, and like Max’s mother, they use the quickest fix tools they have in their toolboxes- the witholding of recess, social opportunities, and desirable activities. 

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Our sensory systems are responsible for detecting sights, sounds, smell, tastes, temperatures, pain, and the position and movements of the body. Sensory integration occurs automatically for most people, and requires minimal effort. You see something you like, you respond positively. You smell something you dislike, you move toward something more pleasant, and away from the thing you dislike. 

Sensory integration is the organization of sensory input and sensations (vision, smell, touch, body awareness, taste, movement) in order to respond appropriately to the various situations, expectations, emotions, and events that are part of our day. Typically, children develop sensory integration through various childhood activities, establishing motor planning abilities and adapting to incoming sensations. When you step into a pre-school, that is what you, the adult observer/parent participant- are actually seeing. You are seeing a number of activities that are sensory based and designed to “train” your child to input a number of new- or familiar- sensory activities into their toolbox. 

For some children, their sensory systems have no trouble interpreting the message. They adapt with no difficulties, or the sensory input can be quickly integrated, or eventually can be trained to do so. Picture the preschool again, and the nice teacher who gently eases a child into an activity that may be disruptive to the child- perhaps too sticky, or too loud. Maybe the child’s response to noise is to sit outside of the singing circle, or to use a brush to keep the tactile interference at bay. The teacher recognizes that sensory activities can, and should be introduced progressively, thus allowing for the child to investigate and interpret ithe input n his or her own unique time and way.

For some Children, however, the sensory system may never interpret the message the way that others do. In the most extreme of situations it can become like an onslaught  of information which is difficult to interpret. It could be that the individual has a Sensory Processing Disorder (SPD) which is a neurological condition that results from the brain's inability to integrate certain information received from the body's sensory systems. 

Children who have SPD, exhibit challenges in how they interpret and respond to sensory input, often leading to learning, developmental and behavioral differences. They may have difficulty in self regulation, difficulty paying attention, they may have excessively high or low energy level, they may respond impulsively, and they may resist change/transitions. 

Sensory Processing Disorder is what is referred to as a hidden disability. It is referred to that because it is not observable to the casual eye of parents, teachers, and pople in the community. Unlike a disability which may be visible to casual observers, parents of children with SPD may not recognize the traits, and find themselves in awkward situations as a result of their child’s behavior. Because SPD is not a visible disability, the child may be treated unfairly for the behaviors associated with it, because observers assume it’s intentionally being exhibited to be disruptive. In fact, many of these behaviors are an effort by the child to regulate his/her nervous systems, which may be on overload. Because it takes extensive effort and focus to integrate input that should come naturally to a person’s nervous system, and because they are not always successful at the process, it becomes even more frustrating for the child- as well as the adults and the child’s peers who often have no idea what the child is experiencing, nor why they are reacting in a specific way.

Children with Sensory Processing challenges may react to sensory input in a number of ways that catch parents and teachers off guard. Some behaviors the children may display include fidgiting, difficulty maintaining an upright position and stabilizing their body position, crashing ito things (often interpreted as clusiness or intentional indifference), diffiiculty with transitions or with modulating emotional responses, avoidance, and extreme sensitivities. Additionally, children with SPD may also appear to be distractible, hyperactive, anxious, impulsive, and inflexible, resulting in difficulty interacting with peers. 

Prior to assuming these are simply behavior problems, and dealing with them via a behavioral approach, it may be helpful to consider other factors. Many of these outbursts and demonstratons are acts of self-advocacy. The role of adults and teachers in these situations can make the difference between calm assessment of situations, or the complete destruction of them. 

Sensory challenges may result in tantrums and are often misinterpreted by student peers and adults who model responses to others in the classroom. If a child is seen as demonstrating avoidance, or as being uncooperative, this can be transfered by adults to children and identifies the child as disruptive. Challenges with poor body awareness are interpreted as intentions of aggression by others, can result in labels which imply intention or purpose (“he meant to do that”), social isolation, and poor self concept.

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In most workplaces and school environments a specific effort is made to provide comfort  to the people who inhabit the areas. For example, there are areas specifically designated to include- or disallow specific allergens or annoyances, be it dust, smoke, noise, or peanuts. Keep in mind, smoke-free environments are a relatively new phenomenon, and were not automatically provided throughout history. This required a re-thinking of past practices, and a progression toward meeting the needs of a specific group of people. Whether that group is a majority, or minority is irrelevant in the eyes of the law.  And yet, while many schools and workplaces don't question the implementation of steps to remedy environmental allergens and their outward physical responses and manifestations - many people are unaware of, or  outwardly hostile toward people who react to sensory overload. This thought process runs contrary to the same laws that provide for other modifications made for people with disabilities in public use facilities. To deny access to these public zones- whether intentional or by default- is the same as denying curb cuts, wheelchair lifts, and other access modificarions. However, people with severe environmental allergens and SPD are expected to simply deal with it, or go away to some other place.

While medication can be useful in combatting some traits of SPD, ethical questions arise. At what point do we as a society determine who should be drugged, and who does not? What is fair? Is it fair to expect our children to be drugged in order to “fit in” to a school system, or into any other public area? Is it fair to drug children on medications frequently never tested on children? In the light of the rulings just handed down on a drug manufacturer who were covering up the use of adult medications on children- would you drug your children simply so they could attend school?

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For a person with sensory defensiveness, environmental stimuli and noise pollutants can be perceived as an attack, or sensory assault which is every bit as dibillitating as a more visible form of disability. The reactions can be as passive as shutting down and falling to sleep, or as intense as a full blown defensive attack on the environment and the people within it. As a response to input, the sympathetic nervous system switches on, and goes into a more primitive protective reaction, “fight or flight”. This type of response has been found to be common in children with sensory processing challenges, who can find their nervous system switching to fight/flight throughout the day.  

What does fight or flight look like? It can take many forms. It can be as simple as trying to run, or to escape from the situation, to retreating to find a place to avoid visual/auditory input, including eye contact- to more complex escape such as shutting down completely by not responding,  to not speaking at all for indefinite periods of time. It can be as non invasive to others as the child covering his/her ears or eyes, or as outwardly “disruptive” as crying, screaming. It can take the form of  seeking proprioceptive/deep pressure input such as hiding in a cozy/tight space. Though it is rarely viewed as such, it can manifest as self protection in the form of hitting, kicking, pushing as a response to new/overwhelming situations such as standing in noisy crowds and lines. It is rarely seen as self advocacy, however, and children with SPD are seen as the aggressor- again, treating the symptom and the child as the same thing, in this case, as being naughty.

Keeping in mind that children  often don’t possess the communication tools to relate their experiences, and children with other manifestations- such as speech challenges, autism, or intellectual challenges, even more so- flght or flight is the only tool that they have to advocate for themselves. It is absolutely critical for adults and especially teachers to recognize the communicatiove intent of these tools. It should be no surprise that for a child with SPD, especially with tactile sensitivities- standing in line, walking through crowded hallways, walking around on a busy playground with children running, crashing, balls flying can be a very unnerving experience, sometimes resulting in a response that is misinterpreted by some as simply “bad behavior”.

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As a family, we have lived with sensory processing challenges for more years than we have had children. Like many people,we didn’t recognize its effects until its manifestations were too obvious than to simply ignore, or attribute to developmental inexperience. Our youngest child showed many of the more socially disruptive forms of SPD, and  prior to being petitioned out of his 2nd grade classroom, our son’s nervous system was switching to fight/flight multiple times throughout the school day as a response to the many complex classroom noises, classroom overcrowding, unexpected touch from unknown individuals,  and being handed stacks of meaningless and pointless tasks involving paper/pencil work which caused him physical pain. Rather than allowing him to avoid (flight) by retreating under a desk, he had been physically restrained and removed from the classroom- at the request of other parents and the principal for years. Ultimately, he was blamed and punished with what amounted to expulsion- for the alternate primitive neurological response- the only ne he had left- fight.

Now, consider the rationale of a seasoned educator placing a child with sensory processing challenges, including personal space and coordination issues, right in the middle of a group of 20+ seven year olds on the floor. A misjudged physical movement where an elbow bumps another child’s nose, a child prone to nose bleeds already- can be immediately interpreted as intentional when the children who, lacking the specifics of communication refer to a bump as “hitting”  which should come as no real surprise. But in Sierra Madre, California,  where we live,   when that child in question has already been labeled a “threat” - such a minor incident can end up as reported to the police as an assault with the result being that the child is eventually segregated and removed from his education.

We wonder how many children with SPD and their parents have faced the stares, and glares, from people watching these children whose nervous systems are on overload.....simply assuming that these children are manipulative brats, and that their parents are completely ineffective and useless role models? We ask, how many people watching such children in crisis have offered a helping hand, or understanding smile, or words of support and encouragement? 

We wonder how many have instead have stood by in judgement, or  spreading their misguided perceptions to others in the form of hateful, hurtful gossip, whereby perpetuating the belief that these outbursts are due to these children as being “bad or naughty” and that they require special “handlers” to control them? How many have assumed that children like this should be physically restrained during overload, irregardless of their tactile and other sensory aversions? How many have blamed the parents abilities? 

One day at our son’s school while he was in crisis, a parent volunteer stood sentry- watching our son through a window. She clearly expected the worst of this child, having heard and distributed misinformation for months previously, and he obliged her narrow minded vision of children with neurological differences by behaving exactly as she desired he would. Instead of treating this child with respect, or even better, offering a helping hand, she devalued this child’s humanity by asking whomever was in the vincinity to respond, “So who do you think will pay for the damage?” 

Who pays for the damage? 

Well, technically we all do. We pay for the damage in a number of ways. It is paid for in terms of money- in the form of lawsuits against the school districts for their failure to adquately address the challenges by providing Occupational Therapy and adequate behavioral supports; the teachers do, in the form of stress and lost trust; and all of the families do, in the form of toxic living and learning environments. We pay for the damage when these providers and protectors and gate-keepers are placed into our schools in the form of leadership. Who pays for the damage? Ultimately, it is the children who pay. All of them. They pay for the ignorance of their elders to recognize that there is more   to our world than test scores and achievement gaps. They pay with our common humanity because they have been taught to build up walls and borders to keep people who do not look or act the same in some other place. This is mine, and that is yours.

Maybe in your world, but not in ours.