Reviewing Katie's Sensory Issues

So, as I read through the chapter on the day in the life of a sensory over-responsive kid (LaTanya) in Lucy Jane Miller's excellent book, Sensational Kids, I recalled/learned/summarized these facts/observations about Katie:

Specifically, the type of problem Kate most struggles with is Sensory Modulation Disorder (SMD), which "makes it hard for her to match the intensity of her responses to the intensity of the sensations she feel".  Her system "cannot filter sensations in a way that would allow her to come up with an appropriate response" so when she is "alerted" to a sensation, her brain goes immediately to fight/flight/freeze mode.

Miller writes, "Parents of children with sensory over-responsivity tell me that they feel they're constantly tiptoeing through a minefield- always braced for the next event that will trigger a crisis", and that is precisely my experience.  

Also, "A typically developing child gets a sensory message such as the big bang of a slamming door, figures out the cause, and lets it go.  In children with sensory problems, this ability to let go of past messages sometimes appears to be impaired, leading to a 'backlog' of sensation that accumulates until it overwhelms the  child's coping skills" and "It is believed that the cumulative effect of undisposed sensory messages is what causes children with SPD to eventually fall apart over triggering events that are minor".   What if the reason Kate loses it when another kid calls her a name is a whole morning's worth of sensory alerts she hasn't been able to let go of?  

Miller goes on to describe how "LaTanya" is alerted by the overwhelming fumes of the school bus, the typical noisiness of an elementary school bus, and the inadvertent touching and jostling by other kids that happens on the bus.  Not to mention the sensation of the motion of the bus and its frequent stops and starts, and unexpected, loud traffic noises outside, such as sirens and honking horns.  Little wonder if she prefers to sit in the front seat to minimize some of these, and have visual cues to warn her of upcoming sensations. But sadly, in the example, the other kids won't always let her sit where she's most comfortable, and she is often reduced to tears.  "If LaTanya needed a wheelchair or had another physical limitation that made it hard for her to function on the bus, accommodations like an assigned seat would have been made for her long ago. However, because her handicap is invisible, accommodations are made on a spot basis and only after she falls apart, which just confirms everyone's opinion that this is a kid with big problems."  (my emphasis)

What if Katie is experiencing these same things, and arriving at school already so overstimulated that her system can't calm down enough to focus on the tasks at hand?  How much of what looks like ADHD behavior is actually her inability to take anything more in or process the information in the right part of the brain because she is so consumed with sensory overload?

Fear Where Others Find Fun

Picture an average kindergartener going to a cousin's birthday party.  She looks forward to it with great anticipation, but problems arise where there is supposed to be fun.  The party is at Pump-It-Up, an indoor inflatable play place, and for extra fun, it's a glow-in-the-dark party, so the lights are off and instead there are star-like sparkles and disco lights flashing.  It looks really cool and the pumpin' music completes the scene.  While the cousin and his friends tumble down the inflatable slide and bounce houses, Katelyn is paralyzed with fear.  She cries and clings to me, insisting on being held, and begging to go home.


Katie has always had a serious fear of the dark.  Having difficulty with vestibular input, she can't sense where her body is in relation to her surroundings, so she usually relies on her sight to clue her in, but can't in the dark.  She finds the flashing lights disorienting  The music everyone else finds fun feels like an assault to her sensitive ears, as do the screams and squeals of fun from all the other kids.  While Katie loves the proprioceptive input of bouncing and jumping, she only feels safe doing it on her own terms, with no one else around to bump into her or wiggle the inflatable unpredictably.  At a party, though, she can't get the bounce house all to herself, so she just sits in the corner of it and screams if anyone else gets too boisterous.  Every movement feels to her like being tossed on a stormy sea.  She is in perpetual fight-or-flight mode as her body tells her she is in great danger.

Symptom- Bothered/distracted by background environmental sounds; i.e., lawn mowing or outdoor construction.

It's funny to me how some of the things they list just as examples fit Kate exactly.  Living in a apartment complex, there is a rather larger mower used by the groundskeeper which can be heard from a long way off.  As soon as she hears it Katie insists on closing all the windows and turning up the TV to cover up the sound.  It's not just that it's loud though, she's actually afraid of it and refuses to go outside while it's running.

Last summer the complex had all the apartment balconies replaced, creating very close construction noises.  She was terrified by their footsteps on the roof, but the couple days they were actually working on our own deck we had to leave the house.  She was in perpetual fight-or-flight mode from the moment they arrived 'til they went home for the night.  Even seeing what they were doing that made all the noise didn't help any, she just couldn't cope.  Simple little things you never even think of with typical children.

Symptoms: Fearful of the sound of a flushing toilet (especially in a public restroom), vacuum, hairdryer or dog barking. Excessively startled by loud or unexpected sounds.

All of the above!  For a long time Kate refused to flush the toilet when she went, and still skips it quite frequently.  But public restrooms are by far the worst.  The hollow sound in multi-stall restrooms seems to echo and amplify the sound, causing her to scream.   

These newer automatic flushing toilets add a whole new element of fear, as she's so small the sensor seems to lose her and they wind up flushing while she's still sitting!  Oh the horror!  The force with which they flush has her convinced she's about to be sucked right down. At the library one day she had to go, but it kept flushing prematurely, so she's hop off and claim to be done, but then still have to go about 5 minutes later, so we'd try again, but she'd get freaked before she was finished, again...after about 4-5 attempts we just had to go home so she could finish going in peace.

Hand dryers in restrooms are another source of panic, primarily because of the noise, but also because of the hot blast of air.  She also hides when I use my hairdryer and the vacuum.

We got a beagle a year ago, and thankfully she's not too much of a barker, because Katie screams and practically jumps out of her skin at every little yelp, and nearly hyperventilates if Tess actually barks.  This extreme reaction to loud sounds was one of the first things that got me thinking of SPD.  Sometimes it's not even that a sound is too loud as much as if it's unexpected.  Where another kids might jump, Katie's whole body convulses and she's in tears.

Symptoms- Distracted (bothered) by sounds not normally noticed by others.

•   Kate can be acutely aware of the humming of some electronics or ticking of clocks and can find it hard to ignore them once she has noticed.  Frequently an excuse for not being able to fall asleep.  She is terrifies of bugs, and nearly had a heart attack when she could hear a fly near her bedroom window that I could not locate and kill.

Grooming Groans

From infancy Katie had a serious aversion to having her nails trimmed.  (Probably not helped at all by the time I cut a huge chunk out of the tip of her finger while she was flailing around trying to elude me, poor thing!)  At first I thought it was just because her little infant nail beds were a little irregular, and they'd get better as she grew.  But it didn't, she continued to scream like I was taking off the fingers (or toes) themselves.  I started having to clip them while she was asleep.

Combing/brushing hair was much the same.  Thank goodness she was so bald for so long, because as soon as there was anything to comb out it was like torture.  She wanted to have long "princess" hair, but couldn't stand for me to touch it.  As mentioned in the post about bathing,  she absolutely could not cope with having her hair washed either, so her scalp got a thick brown waxy build up all over it.  It was truly disgusting and embarrassing.

She never had a real haircut at a salon until she was almost 4, because I knew she'd flip out if anyone tried to come near her head.  We finally managed it by going to Kid's Cuts, where she could be pampered and distracted by movies.  Shampooing there, of course, was out of the question, as was the noisy hair dryer.  But all in all we managed without too many tears.  She still cries every morning when I brush out her hair, and though her fingernails aren't so sensitive anymore, she still swears it hurts when I have to do her toes.

Bathing Battles

In her journal I wrote that Katie enjoyed water play throughout the summer before her second birthday.  I can't remember when or how things started to go south, but within in a few months bath time became an all out war.   Katie developed an intense dread of bathing, an abject terror of the water or even the suggestion of it.  I wondered if something traumatic happened at their dad's house to cause the sheer terror, but I never heard of anything.

When bath time came around Kate would absolutely LOSE IT!  I always ran the water before she came into the bathroom to avoid the rushing water being loud and frightening, and I never filled it very full at all.  But the minute Kate saw the tub she just freaked out.  As I lifted her over the edge of the tub she'd pull her legs all the way up to her body in a tiny ball to avoid any part of her touching the water.  She'd cling to me, scratching and clawing and trying to climb out of the tub, screaming frantically for her life. It was unbelievable!  Heartbreaking!  As if I was dropping her into acid or boiling water!  My ears would ring for half an hour after it was over.  And it took her almost that long to recover from the sobbing and hyperventilating.

Thankfully Katie had very little hair, so it didn't need frequent shampooing.  I resorted to basically just giving her sponge baths, saving tub baths for rare occasions.  When we moved to our apartment I hoped maybe things might be a bit better, (maybe Mom's bathroom had something to do with the terror?) but no such luck.  Every time I gave her a bath I feared a knock on the door from child services, imaging what it must sound like to the neighbors.  Gradually, the terror of the water itself ebbed, as long as I kept it very shallow, but shampooing continued to be a nightmare.  She developed horrible cradle cap because I just could not wash her hair frequently enough or well enough.  It became really disgusting and embarrassing.

Early morning blowup

Rough start this morning  for seemingly no reason.

Katie has been sleeping in my bed for a couple weeks now since she was really sick and fussing all night.  Then, once she was better, she continued to want to sleep in my bed, and actually goes to bed voluntarily and stays in the bed in there, so I've let her stay rather than have our nightly battles.  She's easy to sleep with because she doesn't like to be touched in her sleep (and neither do I!) so she stays as far away from me as physically possible, so it's almost like she's not even there.  Poor Melanie is jealous, as she likes to snuggle and always wants to sleep with me,  but she is very clingy at night, and thrashes and kicks so I get no sleep!  Trying to point out to her that at least this way it's like she has her own bedroom.

Anyhoo- with the brighter light in the mornings, Kate's been waking plenty early (6:30-7:00 instead of 8:00 or later).  6:50 this morning she decided she wanted the Kid's Cuisine frozen meal she had refused last night.  I, however, was not willing to make said meal for breakfast and told her she could have it for dinner.  This was highly objectionable to Katie and she absolutely lost it!  She sat on the bed and screamed at the top of her lungs!  "I want it! I want it! I want it!'  and just plain all-out blood curdling scream.  I picked her up and placed her in the hall, telling her she could not be in my bed if she chose to act that way.  So she screamed even more forcefully, as I closed my eyes to pretend to ignore her.

In a few seconds she gave up on impressing me and went into the other room to scream at Melanie, hoping to get a reaction I'd have to respond to.  Mel did well though and didn't get sucked in (way to go baby!) and pretty soon Kate was back in my room, complaining that she just could not stop crying, which I did not fall for, and eventually asking me not to say anything if/when she calmed herself down.  This is quite an improvement from a year ago at this time when she would have carried this fit on for an hour or more.  Sucks that it happens at all, and in the moment my eardrums were about to burst it felt like an eternity, but she is finally learning to calm down on her own in a comparably short time.

This is one of the incidents where I can't see a clear connection to the SPD, she shouldn't have been overwhelmed first thing in the morning.  These incidents still make me think there might be something more underlying the SPD, and still shake my self confidence as a parent, wondering if she really is a brat too.  Believe me, I don't have all the answers yet, this blog is about my ongoing journey.