Defining A Sensory Disorder

Can that actually be done when even medicine and science are unsure?

Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information received through the senses. **Formerly referred to as sensory integration dysfunction, it is not currently recognized as a distinct medical diagnosis.**

Medicine is, in theory, only a practice. Diagnoses are summations of a description of disease processes and anomalies within the body, either acute or chronic.

Diagnoses need consolidating and identifying to categorize happenings in the human body that, in all honesty, doctors do not truly or thoroughly understand.

That is because there are always new, rare, and unique individual responses to conventional treatments and expectations of those outcomes and breaking new scientific and medical discoveries.

Successive generations of the human intellect, (young inquisitive minds with brand new perspectives and experiences,) are also the authors of fresh, innovative ways to explain disease processes, try new approaches, and use research to discover previously unknown information on those diagnoses.

Therefore, with these realities in mind, it is then conceivable that anytime a human being is diagnosed with something, the patient should understand that medicine in its best efforts does NOT have all the answers.

We are created to use the mind we are given. Research, personal stories, and interactions with other humans, experimenting (safely) with alternate theories and practice are all things I encourage as a healthcare provider to patients with either an older or a new diagnosis.

I myself, do this.

I must.

I am raising a special needs grandson whose multiple diagnoses include Sensory Disorder. I have a 19-year-old daughter who has had 2 strokes and a heart implant and 11 years of health crises without a medical diagnosis. I have a 28-year-old son diagnosed with Central Auditory Processing Disorder and finally, I have a 30-year-old son who was severely sexually abused as a child.

I MUST seek answers and resolutions for myself. I have encountered but a handful of providers in my 30 years as a mother and nurse who cared enough in their profession about their patients to ask the right questions or even begin to proceed to actually provide real assistance to any of my children.

Fortunately, I have had more medical success and positive involvement for my 3-year-old grandson, but I still struggle with the peculiarity and sometimes seemingly inconsistent path that his sensory issues follow.


The incongruent path of a diagnosed Sensory Disorder

In talking with another mother at therapy services this week, I was relieved to discover that she, too, sometimes asks herself the same exasperated question about her son’s (very similar) sensory diagnoses that I ask myself at times.

“Am I making this all up?”

The norm for Charlie and me now is not the norm. I have gotten so used to all the odd idiosyncrasies of the many diagnoses he is challenged with, specifically dealing with his sensory issues, that when someone new meets him and says, “Oh, he looks fine,” I immediately second guess myself.

One of Charlie’s Montessori teachers said to me this week, “Oh, what does he need therapy for? He’s Fiiiine!”

Sigh.

Then I remember how last summer how often getting Charlie back into his car seat after a Target shopping run or especially after an hour at the park, was often an incredible nightmare.

It took three of us to hold him down to strap him into the car seat, and that was as a final desperate act after the hugs and redirection and promises of a root beer did not assuage the “tantrum.”

His superhuman, super-toddler strength and propensity to rage comes from being inundated with meth and heroin in the womb, but specifically is a result of his mother’s meth use (according to research) on a daily basis prenatally.

Charlie can floor a grown man, when he is of the notion and if they are caught off guard.

Testosterone development was obviously affected through an excessive increase of the hormone or perhaps overproduction of the human growth hormone.

I do not, however, need to remind myself of the presence of his self-injurious behavior as it is never far from my mind on any given day. I must watch for it any time he begins to anger or tire.

It is much better of late, simply due to very effective and loving therapies he receives and his certainty of his worth and place in the home.

However, during much of the past two years, Charlie’s rage caused him to hit himself in the head and chest with his fists or any object, throw himself face first headlong onto the hard floor and into the bath.

He also engaged in many other dangerous behaviors without comprehension of or regard for his own safety.

Not a “recognized diagnosis” nor an understood one

Given the lightspeed at which the world has lost its multi-aged addicts to heroin and methamphetamines, it is enraging that there are still are so few studies of the effects of prenatal drug use, specifically in those including pregnancies that survived maternal prenatal overdoses.

“Experts” in neonatal and prenatal fields are still so grossly ignorant of the residual damage to the children born out of addiction, that they cannot even properly teach or prepare the caretaking family members with what to expect. Nor is this life-threatening situation taken seriously.

There is an explosive number of children, teens, and now young adults who are victims of their mother’s addictions while pregnant who either struggle to receive proper care and diagnosis or are cared for by family members who do not know to identify the problem or seek help for some of the incongruent behaviors and deviated or delayed milestones they seen in these children.

Charlie and I are fortunate that my medical background as a Neonatal Intensive Care and Pediatric nurse can be utilized every day of his life to recognize, advocate for, and manage his 12 plus diagnoses resulting from his adverse pregnancy.

Untreated, (un) or misdiagnosed Sensory Disorders

If left untreated or undiagnosed, these children quickly become outsiders in their environments and are ostracized from their peers and sometimes their own families, perpetuating the certain devastating behavior down the not so far ahead road.

You guessed it. Addiction.

Sensory disorders are very serious because they affect the way a child receives, processes, and responds to his own needs, to people, and to a conversation, and to the way he sees, manages, and understands his environment. and his self…his place in the world.

Please read this whole article. It hurts my heart to know that medicine is so far behind the facts and conditions from which so many children and adults suffer.

Day to day nuances of this diagnosis

I have discussed in other articles that the nuances in Charlie’s reactions, responses, and day to day behavior are alternate to what I am used to in childrearing.

There are things I see he does one day in response to an event or action that he does not do the next time that event or action occurs.

There are abilities he exhibits at times that do not fall into the category of the sensory problems he has.

Charlie does not have trunk strength. Even after a year of his therapies, this remains an issue. This is not because his therapies have not been effective… he has improved.

This is because the substance abuse caused a vestibular imbalance (another sensory disorder) and trunk strengthening is even difficult to achieve due to the imbalance he experiences when participating in the very exercises treating the diagnosis.

He is off balance when he walks and especially when running…to the point that it is dangerous for him to be left to do either on his own. He will and does fall daily.

I have been so frustrated for him many times when just walking from the car to the inside of a doctor’s office he has tripped over “nothing,” holding my hand and then subsequently circled around in a tangled mess in front of me.

Recently, attempting to get inside the children’s professional building to see one of his specialists, this occurred 15 times before we got to the door. I counted. And I walk his pace, not mine when we are out and about.

After that appointment, I made another appointment with the ENT to confirm or deny a possible ear infection or wax impaction, which could heighten this problem to that degree.

He also asks “what” to many, many sentences in our conversation. And not because he cannot hear me. His ENT checked that.

His brain rewires certain phrases and wording and seemingly the meaning of some words and sentences becomes fragmented. The concept is not delivered to his brain as it is intended.

These are but a scarce few examples of sensorial deviation that Charlie and I maneuver through in daily life.

Medical indifference? Why are professionals afraid of studying and addressing the real causes of these and other abnormalities?

In our case, I want to know why medicine refuses to overtly recognize addiction and all the outcomes for those affected.

What angers me is that the high risk specialist OB/GYN that delivered Charlie in 2016 told his biological mother that she saw no reason to worry about Charlie after 28 weeks of severe substance abuse and several heroin overdoses and that he “should be fine.”

Is that willful, neglectful ignorance?

Are we to just expect our medical providers to supply us with only the known and readily available googleable book information on a subject or should we expect them to know their field and the subsequential care required to restore and maintain our health?

As a nurse, I not only deliver the latter kind of care, I demand as such.

That doesn’t mean I will get it, unfortunately.

Good days for Charlie and I and his sensory issues are when a meltdown in the car is soothed through the massaging of the sole of his right foot. This is while I am driving.

That has always been a winner of a solution for us because it is a positive sensory touch that his body needs to defer the “unruliness” within him.

Bad days are when he refuses to let me carry out that sensory input because he is controlling the situation and is not ready to be soothed.

I cannot effectively define the sensorial disorder we are treating. I can only say that it is multifaceted, changes at times and reverts at times.

Without therapy, we would be so much worse than I could imagine. It has been the lifesaver that has brought Charlie peace, calm, and the knowledge that he can learn to understand his sensory needs and attend to them independently one day.

This works to prevent addiction, which is a major goal of mine.

To sum it all up

Sensory Disorder can be missed or it can be dismissed as a true and active diagnosis.

It can be misdiagnosed or can be dismissed as clumsiness, low intellect, or as a trait of emotional or mental disorder or many other ridiculous negligent passovers by undereducated medical professionals.

For parents or caregivers of a child or family member with a Sensory Disorder, we know all too well the inconsistency of the diagnosis, but parents of caregivers observing things in an undiagnosed child’s behavior, such as intense and long-lasting anger outbursts, delayed milestones (ex: not potty trained within parameters of two years of age in a female and three years in a male, or child not eating many foods or easily choking) or inadvertent and odd responses to textures, sounds, tastes or verbal prompts/directions.

To properly define a Sensory Disorder one would have to look to each individual family caring for a child diagnosed with the condition, rather than perhaps the medical community.

Each child responds to his/her sensory issues differently, but the commonality in the diagnosis is the need for proper and appropriate diagnosis, support and guidance for the caregivers.

Only when this occurs successfully, can medical providers, through their acceptance of the peculiar and intriguing diagnosis, begin to see the issues as intimately as the caregivers and children experiencing Sensory Disorder and embark on defining true, relevant and googleable diagnoses.

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Christina Vaughn: Pedi/NICU Nurse freelance writer

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My unique English upbringing as a missionary’s daughter deeply shaped my service-minded character, my choices in men and sculpted my view on humanity.

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