Tag Archives: hypo and hyper sensitivities

Travel, Friendship and Sensory Overload

A couple of days ago my friend Ib, of the blog Tiny Grace Notes, whom I was staying with, drove me to the airport.  Ib knows me pretty well and could tell I was nervous, as I have become increasingly as I get older, about getting to the airport, going through security and making my flight, even though we were leaving ample time to do all of that.  Still the combination of nerves due to traveling, my busy work schedule, being away from my family for so long, being tired and going to an unfamiliar airport had me on high alert.

It was snowing a little so we needed to have the window wipers on or Ib wouldn’t be able to see well enough to drive safely.  But the wipers made a scraping noise that I found almost intolerable.  Every time the wipers ran across the window they vibrated and made a noise that was akin to finger nails being raked along a chalk board.  It was jarring and I could feel my body tense, so I gritted my teeth and began an internal dialogue with myself to try to calm and as I did all of this, I thought of my daughter.  I thought about what it must be like to be bombarded with sounds and sensations that she cannot speak of, or if she does speak of them, the words that she speaks are not what she intends to say, so people are left confused, asking questions or simply ignoring.

As we drove and Ib, being Ib, had already sensed my tension and anxiety and was doing everything in her power to take care of me, I thought about how it is only recently that I’ve become hyper aware of certain sounds, sights, tastes, smells, and how things feel to the touch.  It is because of my daughter and other Autistic people I’ve met and/or read and heard speak about such things, that I have begun to see how, things I once learned to ignore are now things I cannot ignore, like those window wipers scraping against the window and making me so upset it was all I could do to sit quietly and not begin to cry.  I am grateful for this as it makes me far more understanding of what my daughter and others might be going through at times.

Ib began to very quietly and gently tell me what she was about to do, before she did it.  So, for example, she would say things like, (I’m making this up as I can’t remember her exact words now) “just up ahead I’m going to slow a little and get into the right lane” or “the exit we want is in another 2 miles to the left” or whatever it was, she would say these things in that lovely, mellifluous voice of hers and I began to calm down.  Ibby was modeling, actively demonstrating what I need to do for my daughter.  She was also being a kind, sensitive and deeply compassionate friend to me and I sat there, my eyes fixed on the traffic around us, feeling so thankful that I know her and am friends with her.

As we drove along and I began to relax a little, I imagined a place where non autistic people would go where they would be given the very real experience of what it might be like for an Autistic person.  I fantasized that there would be all manner of sensations, highly elevated and constantly changing as examples of what might be another person’s experience of daily life.  Just as I found those window wipers so harsh and grating that I could not engage in conversation, I imagined that this place would both bombard the person as well as under stimulate so the person could experience what it is like to alternate between not being able to hear, taste, see, feel, smell and during all of this, demands would be placed on the person.  Not just demands, but the person would be required to answer questions within a specific time frame and if they didn’t answer or got the answer wrong they would be required to go back and start all over again.  However regardless of whether they got the answer right the sensations would remain, the things they would try to do to calm themselves would not be allowed or taken away and they would be forced to stay in this place indefinitely.

As Ibby helped me retrieve my bags from the car I felt tremendous relief knowing that I would be able to manage the curbside check-in, knew I would not lose the ability to speak, knew I would be able to find the correct line to go through for security, find the correct gate and wait for my flight.  All the things I do without thinking, without questioning, things I take for granted.  But I also was aware that this relief is not what others, others like my daughter, necessarily experience.

Emma’s Ears – Autism

Monday night Emma was up at midnight screaming.  Her ears were bothering her.  This has been an ongoing problem for many months now.  She is highly sensitive to the changing air pressure.  As a result of Emma’s sensitivity, I too have become increasingly aware of it and am surprised that I have lived this long without noticing how often it changes, causing my ears to “pop”, as Emma describes the sensation, too.  Still, just to be safe we have taken her to her pediatrician who assured us her ears were fine and referred us to an ear specialist.  To date Emma has gone to the ear specialist three times.  Her ears are fine, we’ve been repeatedly told.  She’s just extremely sensitive to the air pressure which is constantly fluctuating.

“I need help!”  she screamed.  “Ears popping, have to unpop!  Mommy!  Mommy I need help?”

This can go on – as it did Monday night for hours.  That night she was up until past 4:00AM, I don’t know when she finally fell asleep as I eventually lapsed into a kind of restless state of unconsciousness.  When I woke it was just past 7:00AM and Emma was fast asleep, arms spread out like Christ on the cross, blonde hair fanned out on the pillow beside me.  Richard had long since relinquished his place in our bed and gone to her bed.  Merlin, preferring the rocking chair in the living room, was happily curled up away from all of us when I came into the kitchen to begin preparing the children’s breakfast.

I reminded myself that Emma used to regularly wake up at around 2:00AM only to finally fall back asleep somewhere between 4:00 or 5:00AM.  How we managed to get through those middle of the night awakenings month after month is something I cannot fathom given how exhausted I was yesterday.  The combination of crying in pain and screaming for help, help I am unable to give, is what breaks my heart.  I try to remind myself that being there, just sitting with her, even though I cannot change the air pressure, is a kind of help too.  Still it’s difficult not to feel the rising panic and accompanying helplessness that come with witnessing ones child in such obvious pain.

“Please Mommy.  You have to unplug.  Ears!  Ears!”  she continued to cry while twisting her blanket up and trying to push it down her ear canal.

“Em, try to yawn,” I told her opening my mouth in an exaggerated yawn.

“NOOOOOOOO!”  Emma screamed, pounding the side of her head with her hand.  “Nooooo!  Mommy!  Mommy!  I need help!”

It is during moments like these that I want to scream.  I want to hit the wall with my fist.  I want someone or something to help my daughter.  So I go wake up my blissfully sleeping husband, Richard and get him to help me.

“I got this,” he told me after I woke him, waving me away.  “Go back to sleep.”

Only I couldn’t go back to sleep so I followed him into her bedroom where he had ingeniously pulled out a balloon and told her to blow into it for a few seconds.  He also had the foresight to bring some nasal spray which the ear specialist had given us for her.

And while none of these things were “magical” cures for her popping ears, his calm demeanor helped settle her and me down.

“I’m going to lie down with her, you go back to bed,” I told him.  As he got up to leave, I said, “And thank you.”  To say I feel gratitude that I have a husband who is so completely in the trenches with me, who is more than willing to do his share and often does much more than that, who isn’t afraid to submerge himself in all things that make up our crazy family, would be a vast understatement.

An hour later, Emma, still in pain, but at least not screaming like an air raid siren, whimpered, “Ears still popping.  Go to Mommy’s bed?”

“Okay Em.  Come on.”  I led her through the hallway into our bedroom and climbed into bed with her.

Last night, exhausted and concerned that we might have a repeat episode, I went to sleep early.  Miraculously Emma slept until almost 7:00AM.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

More on Emma’s Ears…

The good news is Emma’s ears look fine.  The bad news is her throat is a little red and evidently strep continues to make its way through the New York City schools.  So we had yet another strep test done.  The immediate results were negative, but we’ll know more today or tomorrow once the culture has had a chance to grow.  So Emma is staying home today on the off chance she does have strep and so she won’t needlessly contaminate her fellow students.

As I write this, Emma is leaping around the living room singing, while waving a thin strip of plastic around like some sort of experimental ribbon dance.   Every now and again she stops and stands very still while twirling the plastic around and around, seemingly mesmerized by it only to continue jumping, singing and dancing a few minutes later.

It’s impossible to know what Emma is thinking or feeling.  I watch her and make assumptions, much as I did yesterday regarding her ears, only to find that perhaps she has strep.  I think I’ve said this before, but autism throws all maternal instincts right out the window.  Whenever I think I have an idea of what’s going on with Emma I am almost consistently proven wrong.  She complains of her ears, look at her throat.  She complains of her ears, I suspect her throat (pride myself in being a quick learner) and it turns out it’s her ears.  It’s as though there’s some sort of “Emma’s Law” out there, whatever I think is going on – I’ll be wrong.   You think you’ve figured this out?  Ha!

Yesterday I did what many parents do when confounded by their child’s ill health.  I went to the internet and googled – ear pressure, ear popping and a number of other things.  All of which was fine until I read about a troubling condition some children are afflicted with called – Blocked Eustachian Tube – a decongestant was recommended followed by a visit to the doctor and Barotrauma, the only suggestion being a doctor’s visit.  Emma’s pediatrician didn’t mention either of these things.  But now I’m convinced Emma has some horrific condition which will only be remedied with invasive procedures, possibly surgery and I’m traveling for work tomorrow, so it’ll be up to Richard to cope with all of this in my absence.  No one has said any of this to me, these are the conclusions I have come to after going onto the Internet for an hour.

All of which is to say – I must avoid the internet when it comes to diagnosing my child’s ear problems.