My daughter was the kind of baby who startled at the slightest noise. She jumped at the sound of a closing door. Footsteps rattled her. Ripping or tearing sounds sent violent shivers throughout her little body. As a toddler, the sound of thunder or fireworks caused her to flap her hands and cry. Soon, the very threat of a those noises- a distant raincloud or a Fourth of July picnic- would cause her great anxiety, frequently bordering on hysteria.
She also had other little quirks that made her different than my other children. She was messier (always had food on her face and hands), and had to touch everything she laid eyes on. She hated rides at the amusement park. She was difficult to get to sleep and miserable when she woke up. She never really liked to be swaddled or hugged.
She had this super-annoying habit of collecting random items and shoving them into small spaces. Wherever there was a corner, there was a pile of stuff. Backpacks, purses, paper bags, and pockets- always full of collected treasures. But all kids do that, right? Well, no. My younger children didn’t.
I wasn’t able to put my finger on her issues until she was 9 or 10. She was an athletic, straight A student with a ton of friends, but she couldn’t unload the dishwasher in less than an hour. She had a difficult time organizing things- sorting the silverware was usually a battle as she seemed to be careless and intentionally lazy about getting the forks and spoons into the right slot. In fact, she usually would grasp the utensils by the mouth end, instead of the handle. I would explain to her that she shouldn’t touch the end we would be eating from. She continued to do it anyway.
As her mother, I was frustrated and angry every time she attempted this chore. She would be reluctant to start. She would just stand in front of the fully loaded dishwasher and stare. She seemed disconnected from the task, only giving half-effort.
It seemed like and attitude or behavior problem, one that needed stern parenting. Reasoning didn’t work. Yelling didn’t work. Neither did threats of punishment or shaming. In fact, my negative responses only made it worse. She would whine. I would raise my voice. She would cry. I would stomp off. She would shut down.
Nobody felt good about it.
I looked for a different explanation. I wrote down every one of her little “quirks”, and low and behold, I found a pattern:
Visual hyposensitivity + Auditory hypersensitivity + Tactile inconsistencies > Sensory processing abnormalities > Slow mental processing > Organizational problems > Difficult behaviors >Poor caregiver response.
The Ah-ha moment: It’s impossible to organize information if you don’t perceive it correctly.
Now that she is a teenager, she is able to intellectually override most of her little “quirks”. She has developed a sturdy, well integrated sensory-motor cortex around her baby-brain, and she can intentionally reason and make sense of her environment thanks to a fully functional frontal lobe. She doesn’t freak out about storms or fireworks or rollercoasters. She remembers to wipe her face and hands, and can empty the dishwasher without errors. She is a normal happy, healthy, and well-socialized teenager.
Except when she’s really tired. Or sick. Or just run-down and indifferent. I see remnants of those same quirky behaviors whenever she is not at her best. I see her painfully flinch at a rumble of thunder, and miss a gob of food on her lip. It takes energy and awareness to self-modulate, and when her brain is tired or distracted, she doesn’t process sensory information as well.
I fully expect that when she reaches the age when her body starts to degenerate (brain, joints, organs), some of these “quirks” will reappear. Her brain will grow tired. And if she has some form of dementia like Alzheimer’s disease- where her damaged language and memory centers will prevent her from saying “loud noises feel like sandpaper on my raw nerve endings”- she will likely be an anxious, hysterical mess.
I won’t be there to explain any of this. Her children won’t know how she was before her brain was fully developed. They won’t really know that she couldn’t process auditory information in loud, sudden bursts. They will likely say that she’s always seemed fine with loud noises- in fact, the issue of loud noises might not ever come up, completely missed on anyone’s radar. Her higher cognitive centers had done an excellent job regulating her responses throughout her adult life.
If her higher brain centers continue to deteriorate to the point where she needs to live on a dementia unit, her caregivers will not understand how some sensory input is poorly processed and integrated in her “baby brain”. She will react differently to sensory input than the other residents she lives with. She won’t want to sit still. She will be fidgety and grabby and like to hoard things. There will always be something in her hands.
Whenever there is a loud bang or crash, she will have a painful, physical reaction. They will probably try to reason with her unreasonable responses. But she will not be able to understand reason, so she will pace the floors and touch everything she sees, trying desperately to make sense of her environment.
This will frustrate her caregivers, who will then try some behavior modification approach like distraction or reward. Maybe they’ll give her a puzzle to work on or a coloring book, which she will stare at and wonder where to begin. They will prompt her by putting several crayons in front of her and encourage her to get started. She will just stare, indifferent yet completely overwhelmed.
The caregivers won’t know that a sensory motor task- one where she gets to couple sensory information with a gross motor response (like dancing to music or dribbling a basketball)- would do more for her organizational skills than telling her to pick up a crayon.
My daughter will want to please her caregivers. She will want their approval, but be paralyzed by all the materials and steps involved. She will appear indifferent, but feel completely overwhelmed. She will probably pick up 2 crayons at once and touch them at their points, maybe even wondering in the back of her mind which one is the fork and which is the spoon, worried that she may get it wrong.
Down the hall, someone will slam a door, and she will suddenly begin to wail and scream. Her caregivers will not understand this sudden outburst, not see the connection, and think it started because she doesn’t want to color the pages. This will seem silly to them, so they will push her to continue. When the hysteria increases, they will raise their voices and command her to stop. She won’t. She’s failing at the task and her caregivers are upset and that loud bang down the hall felt like sandpaper on raw nerve endings. Someone will try to touch and comfort her. She will likely pull away and maybe even swat at them- because she doesn’t like to be swaddled or hugged.
Eventually, they will medicate her behaviors into submission. Instead of helping her by regulating the sensory information in the environment, instead of letting her experience different sensory information in a safe way with lots of practice and consistent responses, instead of allowing her to move around and touch things so that she can organize her thoughts a little better, they will dull all of her senses with medication, immobility, and lack of stimulation.
This is why it is important to screen for sensory processing disorders in dementia. Because cortical deterioration exposes sensory processing weaknesses. Because there are different and better approaches to managing them. Because I won’t be there to do this for my daughter. Someone will need to.
Postscript: Although I am describing a scenario in which a child with a sensory processing disorder experiences a re-emergence of some of the same symptoms once she is aged and demented, I think sensory processing disorders do not necessarily need to be part of a person’s history in order to be present. I think that many people with dementia may develop sensory processing disorders in reverse- failing sensory systems, poorly integrated vestibular systems, deteriorating communication between areas of the brain… more on that later.