Parenting a Misophonic: Living With Selective Sound Sensitivity Syndrome

My daughter wears her iPod everywhere. And if the buds aren't in her ears, they are in her pocket. She doesn't eat with any member in the family, instead going to her room to eat with the door closed and the music up loud. The only time we've successfully eaten together is in the living room, on opposite sides, with a movie on uber-loud.

She's not a difficult teenager. She's not going through a phase (which I was once guilty of thinking), and she's not making this up.


She has misophonia. It's also known as 4S, or Selective Sound Sensitivity Syndrome. The term was coined in either 2001 or 2002, depending on the text you are reading, by New York based neuroscientists Pawel and Mararet Jastreboff. There is no cure.

Definition and Symptoms

Misophonia actually means "hatred of sound," but -- from the more descriptive Selective Sound Sensitivity Syndrome moniker -- what really happens is rage or panic when hearing certain sounds, like swallowing or sniffling. The most typical responses to trigger sounds (chewing, clipping nails, clicking a pen) are: anger, rage, irritation, annoyance, and anxiety -- leading to the urge to flee or escape the environment. You can imagine the depression, self-hatred, shame, and negative self image those emotions might create in an individual, especially when coupled with an emotional need to strike back, physically, or using mimicking sounds.

My daughter reacts to the sounds of sniffling and chewing. And not just the annoyance that you or I feel about it. It's panic, it's rage, it's lashing out. 

On a recent cross-country airplane ride, when the flight attendants insisted that all electronic devices be turned off (meaning her iPod, and her only workable defense left to her -- she couldn't get up and leave), I held her in my arms while she cried, her nails digging into her palms, shaking, forearms tensed. I plugged one of her ears with one hand and massaged her head, while she shoved her other ear into my lap and held onto me with terror in her fingertips.

This is not made up. No one can make up misophonia.

Eric McDade, osteopathic physician at University of Pittsburg's department of neurology believes that it's caused by "abnormally strong connections between the auditory and limbic system in the brain." In other words, a mis-wiring in the brain that causes an emotional response to a particular sound. (www.post-gazette.com/stories/newshealth/for-sufferers-of-misophonia-silence-is-golden-664657)

Though my daughter's symptoms started about two and a half years ago, we've only known the name of it for almost a year, and yet I have only tried to find her relief sporadically. She's tried some energy work that helped a little, but not nearly enough. I've bought her noise canceling headphones, but they weren't helpful. Earplugs hurt her ears. Her school teachers in the private school she attended were accommodating, and let her sit in the hallway to do her schoolwork when her classmates all had colds or allergies and sniffed her out of her seat.

Misophonia starts pre-pubescently, which is why I thought it was a phase at first. Chewing never bothered her before, so why can't we eat together as a family now? 

An article from New Republic said it is probably an "old brain" problem, "likely located in the part of the cortex that processes emotion and that evolved a long time ago."

Phonophobia is a specific kind of misophonia, and is present when fear of the sound is the dominant emotion. This is not the type that my daughter suffers from. She's definitely a 4Ser -- though the UK Misophonia website suggests that 4S be considered as a kind of misophonia. Regardless, she fights every day with this syndrome, and I ache with my own helplessness.

Treatments

During my research, I've discovered a bunch of new leads to check out. There is a 4S specialist in Portland, Oregon (Marsha Johnson, audiologist) that I want to get her in to see; the first annual misophonia conference scheduled for October 25 and 26th in Portland, Oregon; a couple of forums that she could join and see that she's not crazy and there are others fighting and living with the same condition, and there's MMP to be hopeful for. MMP is Misophonia Management Protocol, and 85% of the people who do it find some kind of improvement.

Melanie Herzfeld, audiologist at The Hearing and Tinnitus Center in Woodbury, New York says that some of the techniques used for treating tinnitus and hyperacusis (extreme sensitivity to certain frequencies of sound) can reduce the effects of misophonia.

Other treatments might be: earplugs, cognitive therapy, neuro feed back, desensitization therapies, counseling, rotating cycles of pleasant sound therapy paired with unpleasant sounds, and psychoanalysis. Or any combination of these. I'd also consider more energy work or hypnosis.

Theories

Misophonia.com says "a current hypothesis being explored is that misophonia is some type of neurological disorder in which repeated auditory signals trigger a fight or flight reflex."

And apparently there is a genetic component, too.

Most surprising, Wikipedia postulates that misophonia may be another type of synesthesia -- a "neurological condition where one stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway." Like smelling a color, or hearing a shape.

Right now, the strategies that my daughter uses are limited to her iPod, leaving the room, and relying on the safety of her bedroom. She also concentrates really hard on any distractions she can find for herself  in the moment that she sees a potential trigger approaching. She plugs her ears, digs her fingernails into her skin, or sings to herself. Every day is a battle in self-control. She fights her limbic brain response to keep her emotions in check and not hurt herself or others. She's strong, and I believe in her, but I know that she'd welcome any help I can get her.

I feel the child advocate in me awakening. I did this once before with my son, who's on the autistic spectrum. Now it's time for me to be my daughter's champion, and help her understand, and live with, this invisible disorder.

Resources and Education

Misophonia 4S Provider Network 
Here's the provider info for the expert specialist in Oregon:
Marsha A. Johnson, Audiologist
Oregon Tinnitus and Hyperacusis Treatment Clinic, est 1997
825 NE 20th Ste 230
Portland, OR 97232
503-234-1221
tinnitus-audiology.com
tinnitusdoctor@yahoo.com

Sound Sensitivity is a misophonia forum for sufferers only.

http://abcnews.go.com/blogs/health/2012/05/18/safer-for-misophonics-2020s-misophonia-coverage is the BEST "definition" I've ever seen of misophonia. Two video clips show actual triggered responses, so the non-believers (and let's face it, there will always be those that doubt) can see real people affected by this.

Misophonia.com has a forum, too, and there's a section for Tips and Tricks.

A Time of Transition Requires a New Name

This blog started back in 2008 as a mommy blog. Or, more accurately, a place to compile the insanity of my life -- specifically with my son's undiagnosed PDD-NOS, and the unschooling/homeschooling adventures I had with him, and his sister.

The blog was aptly named Insane Parents Unite!

But now my kids are in middle-school. And you can't even buy parenting magazines geared towards kids that old. Not to mention that both my children refuse to be photographed, and what fun is a blog post about teenage angst, hunting for high schools, or the continual battle of limiting video gaming time when you can't even add a picture?!

Grumblegrumble.

So I changed the blog title to Indian-flavored Everything because I love all things Indian, was dating an Indian man, and I was running out of kid topics. (Which isn't really true, but whatever.) I still want to write about my favorite Bollywood movie, and the trip I'm dreaming up for Kerala with my new guy, but I also want to write about homesteading and reading and parenting older kids and cross-cultural dating. And hopefully in an artful-heartful way so that I may bring some joy to the soul along the way.

So now what do I call the blog?

***

And now for something not-so completely different ... I will be starting a BRAND NEW BLOG within the next month (in addition to this one). Something along the lines of Eco Expat. I've bought some land in Costa Rica at an Eco Village (off the grid, self-sustainable, intentional community) and I want to chronicle my experience of readying myself for life in a foreign country, earning income in a foreign country, learning a new language, practicing my homesteading skills -- plus all the logistical things I didn't anticipate happening but I'm sure will.

Stop by here for a link to the new blog.

Pura Vida!

The Ghosts of Unwritten Blog Posts

Makes you wonder
what happens on Thursdays at 11am.
You know?

I woke up in the middle of the night last night and thought of all the blog posts that have been rolling around in my head lately -- unwritten.

First there was the one about my vacation and love and what it's been like in long-distance relationship realm. Then there was the one about abortion and how single parenthood could affect someone's stance on that issue. And then that blog post segued nicely into the one on religion and what last vestiges of power and guilt organized religion still hold over me. Also how my cyber-friends in Portland can make classy barbs at religion -- during Halloween no less -- and still have a following.

Then there was the post on Ikea and secrets.
One on assimilation, and becoming someone else -- how hard it is to stay authentic, especially in relationships.

One on moving yet again.

One on the pros and cons of having a baby later in life. Or more specifically do I want to have another baby. Because being newly divorced means you can ask yourself these questions now.

There was another post I thought about on self-improvement, living in line with your principles, and saying sorry when it's the right thing to do.

But dammit.

I had a conversation with a friend that turned that post on its ear.

Another blog post was going to be about my favorite sweater. The one I love and looks great on me -- like it was made for me -- painted on. With a hood and cool buttons. My Faerieworlds sweater.

But.

How every time I wear it, I think of my ex-boyfriend.

And that's crummy. Because it's coming on winter now and I'll be wanting to wear it all the time. The only thing I can think to do is ... wear it. And hopefully new memories will come from that.

And then there's the post on my son and counseling: more invisible special needs, and my fears surrounding those.

And my fears surrounding the future. Everyone has those fears. That would make a good blog post, too.





But not in the middle of the night.

Dragging My Feet?

I went walking with the kids yesterday. A big long, fat walk. We were gone for about two and a half hours. Our goal upon setting out was timing how long it took for Robert to walk home from school, and if the walkie-talkies could make the distance. Could I hear him on the walkie-talkie if I was at home or work or driving, and he was at the school?

I don't have a complete answer to that yet, but I do know

"Stranger Danger" or "I Was Reminded"

I was reminded today of Joey's vulnerability.  Every day I see him grow a little more and let go with an appropriate amount of fear.  Well.  Maybe a little more than is normal.  I do.  I worry.

When the kids were littler (like 3 and 5), I'd frequently lump them together in my parenting. Same bedtime, same toys, letting them both alone to play while I did housework or took a shower.  I expected (without thinking it through) that he could cognitively, physically and emotionally be able to follow along with his older sister.

I was reminded more often than I cared to that Joey needed to be watched more.  Toys down the toilet, soap all over the floor, pushing his screens out the window -- followed by all his toys, books and bedding.  Thank Goddess not himself.

Perhaps this is cognitive and social delay, ADHD, or just personality differences between the two children -- because Aubrey never did any of this.  Or if she did, it was as a follower to him as ring leader.

But today I am reminded of the seriousness of whatever this 'spiritedness' is of Joey's.

We arrived at Tae Kwon Do class and parked behind the building.  Aubrey and I filled the parking meter.  She fished coins out of her silver purse, sequins the size of quarters sewn onto the fabric. 

"I'm going in," Joey said.  I looked to where he was standing.  Less than four feet away.

"No! We all walk together.  Wait for us," I said.  I turned back to the parking meter and Aubrey painstakingly looking through her bag for "silver ones."

"I just wanna peek around the corner."  He means the alley.  We have to walk down the alley to get to the front of the building on Willamette Street. He usually remembers to peek slowly around the corner before barreling into the alley-used-as-often-as-a-street.  I paused.

"OK.  Don't go farther than that pole."  And I pointed.  Did he see me?  I was looking at the pole.

I finished with Aubrey and the meter and turned to the pole.  Not there.  I didn't panic but quickened my pace to a trot.  Sometimes he hides behind the wall and "boos" around the corner, giggling.  I turned the corner.  Not there.

I glanced up the alley and saw him standing at the corner talking to someone.  My initial reaction was irritation.

"JOE!" I bellowed.  Then I noticed he is with a man; large and dressed a little dingy.  I quickened my pace. 

"Come here!"  What if he'd been kidnapped?! The man looked at me and I felt ashamed at my second reaction.  I don't want the man, if he's harmless, to think I've prejudged him.  Which, of course, I have.  

"You were supposed to wait for me back here."  I hoped this softened my prejudice to the man, at least to his ears.  It assuaged my guilt -- but only temporarily.  

I don't want my children to grow up thinking that street people, whether they are homeless or not, are dangerous.  I don't want my children thinking that all strangers are dangerous.  But how to tell the difference?  Even I, as an adult, come up with the wrong interpretations of someone's motives sometimes.  Or get a feeling about someone and have it be totally inaccurate later.  

Who am I to teach them about ... vibes?  Shouldn't they be left to decipher that themselves?  I don't want my prejudices to rub off on them -- not when I try so hard to not have them myself. I pride myself on not being racist or prejudiced in any way, but obviously that can't be true if I worry that just because some man is talking to my son that he wants to do him harm.  And that the only reason he didn't carry through with it was because I thwarted his plans by coming around the corner!

When I reached the corner, holding firmly to Joey's hand now, the amiable -- though dusty and patchworked -- man smiled and said, "I like that boy.  He's smart.  He's a good-lookin' kid."  He waved and walked off.

Before he did, I returned the smile and said, "Thank you."  If I take apart his statement, eeww.  I'm terrified.  "I like that boy ... he's good-lookin'"?!  All is well though.  I was here. Joey's safe.  This is what I'm telling myself, but what I say out-loud is different. 

When I turned the corner, I continued my nasty asides to Joey about not trusting him and having to now hold his hand ALL THE TIME.  Even as I did it I hated the sound of my voice.  I knew it was from fear that my voice goes evil like that, but how did Joey feel?  

Looked from his perspective the encounter might have been something like this:  bored of waiting, can't stand still too long -- it hurts to do that (or maybe creates panic or anxiety for him to be still -- thinking ADHD here), I'll just go to class, so excited about class, here I go, Mom and Aubrey are behind me, skipping through the sun, bare feet on concrete feels neat, 'oh hi nice smiling man that would never hurt me, how are you?' JOE!  uh oh, Mom's mad, why?, sadness, I never do anything right, she's always yelling at me.

I feel so completely ill-equipped to take this job of mom.  I hopelessly make things worse for my children, when I only want to protect them and guide them into compassionate, soulful human beings.  When I stop to think "They are compassionate, soulful human beings," I hold my breath with the crushing fear that I'm ruining it for them.  Ruining them for them.  I make it all worse.  

So who is the vulnerable one here?  Is it Joey, who is seven and trusts openly, and doesn't think it is wrong to try and walk home from a public school without telling anyone, just because he thought it was time to go home?  Or walked out of the bathroom and out of the school building during the middle of the day to wait for me to pick him up, when I never pick him up at that time, or on that side of the school.  He didn't tell anyone where he was going and he was lost for twenty minutes.  

(The principal called us after he was found.  When I questioned her about that she said, " ... if we called every time a child was missing and then turned up ten minutes later, we'd be on the phone a lot and scaring a lot of parents."  There was SO MUCH of this conversation that horrified me .. but that is another story.)

Or am I the vulnerable one?  Because I worry so much and feel guilty so much.  And feel like such a bad parent so much.  I know that 'no one's perfect' --

-- but it's always so astonishing when I'm not.