Bite Me: sensory disorders in a nutshell
"Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. Formerly referred to as sensory integration dysfunction, it is not currently recognized as a distinct medical diagnosis..." (WebMD) and even if it was, it would just be the eighth, ninth, tenth effort to put a label on complex, co-morbid conditions that equal shitty days on occasion.
One way I coped with sensory issues was to write Social Stories. I authored this one and many more of these for different real life scenarios to front load information for my children; but Carol Gray gets credit for creating the concept of the Social Story.
Ironically, she's the only one of my three offspring who's never bit me. "Studies by the STAR Institute suggest that at least three-quarters of children with autistic spectrum disorders have significant symptoms of Sensory Processing Disorder" (wait, I thought this wasn't a diagnosis?)
(understanding-sensory-processing-disorder by STAR Institute)
"Sensory Integration Dysfunction: will be so severely affected by their sensory preferences that it interferes with their normal, everyday functioning. Sensory issues are usually defined as either hypersensitivity (over-responsiveness) or hyposensitivity (under-responsiveness) to sensory stimuli. Below, find some common signs of Sensory Processing Disorder.
"Hypersensitivities to sensory input may include:
Extreme response to or fear of sudden, high-pitched, loud, or metallic noises like flushing toilets, clanking silverware, or other noises that seem unoffensive to others
May notice and/or be distracted by background noises that others don’t seem to hear
Fearful of surprise touch, avoids hugs and cuddling even with familiar adults
Seems fearful of crowds or avoids standing in close proximity to others
Doesn’t enjoy a game of tag and/or is overly fearful of swings and playground equipment
Extremely fearful of climbing or falling, even when there is no real danger i.e. doesn't like his or her feet to be off the ground
Has poor balance, may fall often
"Hyposensitivities to sensory input may include:
A constant need to touch people or textures, even when it’s inappropriate to do so
Doesn’t understand personal space even when same-age peers are old enough to understand it
Clumsy and uncoordinated movements
An extremely high tolerance for or indifference to pain
Often harms other children and/or pets when playing, i.e. doesn't understand his or her own strength
May be very fidgety and unable to sit still, enjoys movement-based play like spinning, jumping, etc.
Seems to be a "thrill seeker" and can be dangerous at times
"Does your child have sensory issues that inhibit his or her daily functioning?"
(signs-and-symptoms-of-sensory-processing-disorder Brain Balance blog)
Quick little tangent - I love this chick on Instagram @borderlinepersonalitymum - she's the rockstar of commiseration.
So yeah. "Although sensory processing disorder is accepted in the Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood (DC:0-3R), it is not recognized as a mental disorder in medical manuals such as the ICD-10 or the DSM-5." Thanks, Wikipedia.
"As for autism, studies demonstrate that behavioral signs can begin to emerge as early as 6 to 12 months. However, most professionals who specialize in diagnosing the disorder won't attempt to make a definite diagnosis until 18 months." (Mar 15, 2013, Autism Speaks)
You bet your ass it does. Some call it colicky but hindsight is 20/20.
Anyway, here is a real view of sensory issues by the ages:
Your kid nursed, my kid's eyes followed a dust spec and he unlatched.
Your kid relaxed to the sound of your voice, you laid them down, they stayed asleep; my kid required my voice as a constant through the entirety of their nap.
Your kid pointed, made eye contact, checked to make sure you looked in the direction they had pointed; my kid stood shaking, screaming and red-faced in front of the cupboard until I picked the correct object.
Your kid smiled and laughed; my kid looked through me.
Your kid wore the matching outfits, shoes and accessories they received as gifts; my kid screamed if there were tags inside or lines on sock toes.
Your kid fussed during their first haircut; my kid writhed in pain, screaming through each shampoo.
Your kid potty trained a little late; my kid smeared his feces requiring 40 hours a week of ABA and 8 hours a week of respite care.
Your kid protested through their first dental visit; my kid bit down and shattered a metal and glass instrument the moment it entered his mouth.
Your kid learned "stop, drop and roll"; my kid's principal would call me the day before a fire drill requesting my child be absent from school the next day.
Your kid looked forward to circle time; my kid refused and sat in the back of the room with their shadowing aide just in case another student sat on the same letter of his first name.
Your kid could sit in restaurants through a meal; my meals outside of my home looked like I'd kidnapped three kids who were trying to find their parents by screaming.
Your kid had to hurt a few classmates' feelings because you couldn't host a party with 32 kids; my kid left her own birthday party for an impromptu birthday gift shopping spree because the one kid who showed up had to leave early. (Bounce house for one, anyone?)
Your kid went to circuses, Disneyland, movies, monster truck rallies; my kid could leave the house as long as we had her biting guard, shooting-range noise limiting ear muffs, and two cars (for quick departures).
Your tweenager enjoyed surprises; my kid had a meltdown in aisle six because I put something in the grocery cart that wasn't on our shopping list.
Your teen looked forward to 3-day weekends and Spring Break; my kid tearfully (without sports practice and school) "doesn't know what to do, mom."
Your teen looked forward to high school graduation; my young adults have both experienced academic probation (despite straight-As in high school, academic scholarships for their secondary educations and high Intelligence Quotients).
This world was not built for my kids; it was built for yours.
"In the 16th century,...most Western cultures deemed it important to separate those whose behavior or abilities seemed abnormal from the rest of society. Governments built large institutions....as those with mental disorders were considered to be more like animals than people." (excerpt from MyAutismTeam.com posted Aug 11 2018) The DSM-5 published in 2013, corrected many of the misconceptions about the abilities, strengths and criteria used to diagnose the "Worldwide population of 1 to 2 percent of people believed to be on the Autism Spectrum." I know no other world; Autism affects 100% of my three children.
When she was little it was reported as "spoiled," "likes being bossy with her peers," "forces crayons until they break," "whispers to herself." As a teen it was evaluations and IEPs full of "she talks too much without guidelines for sharing," "likes to have the leadership role," "...continues to struggle with the regulation of her emotions," "reassess higher level of care." As an adult it is "voluntary termination [due to] abandonment of job," and "recommending intensive outpatient," and "beyond our scope of care [because our program] doesn't have lock-down services." Today she faces accusations and guidance from her extended family that "she should just wear more makeup," "her life is out of control," and "has dysmorphia." After 17 years of evaluations, assessments and reports and recommendations from medical experts, her extended family has diagnosed her with having #FOMO.
She is the bravest person I have ever known for the simple fact that for 20 years, 10 months and two days has chosen to wake up with overwhelming sensory dysregulation; that every light, every sound, every instruction barked at her (according to multiple medical professionals) at full volume and warped yet jumbled speed. That these sounds and lights cause physical pain she reports to her care providers as "the physical pain of grief."
Yet, she continues to waken.
Yet, she continues to (occasionally) smile.
Yet, she chooses to live.
My children are my heroes. I still, daily, always only aspire to be theirs.
"You have to know the past to understand the present." ~ Carl Sagan
To support my mission to support others within the 1-2% population of Caregivers to those affected by Mental Disorders, Developmental Disabilities, Mental Illness, please take a moment to visit HoldMyBeerFoundation.org and review our programs and the ways you can support other families struggling on similar journeys.
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