Sound Support: 8 ways to Improve Life with Misophonia

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We have now been living with misophonia for almost two years.  Misophonia was a sleeping monster inside my little girl… awakened  during the summer of 2012.

 

Misophonia is condition of extreme sound sensitivity.  It is characterized by an immediate, acute, negative emotional reaction to certain sounds.  People with misophonia experience a fight or flight response to simple everyday sounds like tapping fingers, typing on a keyboard, crinkling wrappers, sounds in speech, eating noises such as chewing, swallowing, or crunching.  The fight or flight response creates panic and rage, and sufferers can become violent and emotionally explosive when they hear these triggers.

 

The easiest way to relate, would be to imagine being trapped in a room with someone who is scratching their nails down a chalkboard and will not stop.  Most people will have a powerful, negative reaction to this scenario… first a cringe, cover their ears… but if the noise persisted,  soon they would flee or get angry and demand that the sound stop.

My daughter feels this intense reaction to small, insignificant sounds.

 

Unfortunately, misophonia triggers can also be specifically focused on one person.  In my daughter, her emerging misophonia presented as an intense aversion to my voice.   In fact, emerging is not quite the right word… misophonia looks more like the sudden transformation from Bruce Banner to the Hulk.  Quick, violent, immediate, and terrifying.

I wrote about that crushing few months in Sound Desperation and Sound Hysteria.

If you have never heard of this condition, you are not alone.  No one seems to have heard of this condition.  Doctors and mental health professionals are unaware.  Which means that as parents and sufferers of misophonia, we are largely on our own, trying to cope with a disorder that looks like a giant temper tantrum.  Without being understood or respected as a true health crisis, misophonia can quickly tear a family apart, destroy relationships, and create a life of isolation and desperation.

Since we began dealing with misophonia, Lydia’s triggers have increased.  She now has powerful reactions to her sister as well, a heartbreaking reality I wrote about it in Sounds of Our Crisis, Living with Misophonia.

Her list of triggers are growing every month.
It has been bad.  Really, really bad.  I will admit here, that there have been weeks of time where my husband and I wondered if we would be able to raise our child.  I have googled  boarding schools in our area, feeling my heart may just disintegrate in my chest like a wet tissue.

 

Two years in, I am relieved to report that things have gotten so much better.
I finally feel like I have something constructive to say!  So, here is what we have learned, and how we are coping.  I want to share it, to help others who are in those really dark places right now.

It seems like every health article out there begins the same way… perhaps because even though we don’t want to hear it, the truth and healing lies in diet, sleep and exercise.

Bleck.  I know.

But essential.

Misophonia is easiest to relate to when you think about irritability.  Moodiness.   It is really hard to understand Lydia raging about the way I say my S’s, but I do understand what it feels like when I am too tired, too hungry, or too inactive.  Human beings are more likely to overreact, say cruel things, tantrum, or embarrass themselves if they are  sleep deprived, hungry, or have a lot of pent up, unreleased frustration.

 

So.

#1.  SLEEP

 

Lydia must have regular, good sleep.  We rarely allow her to have sleep-overs with friends or stay up late on weekends because being tired makes Lydia impossible to live with. We are very, very strict about her sleep schedule.  I am afraid as she gets older this will be harder for us to manage well, but for now, she doesn’t have much flexibility.

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#2. EXERCISE

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We find that she does so much better when she is really active.  We will always have her in a competitive sport that requires exhaustive exercise (like swim and soccer and track) because this makes her feel so much less irritated… and she sleeps better.

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#3. DIET

When she is hungry, watch out.  When we plan poorly and she gets too hungry, or if we get lazy about healthy snacks, Lydia has a much harder time with her misophonia.  It’s an almost guaranteed disaster if she gets into that low blood sugar zone.

 

#4.  HEAVY BLANKETS AND TIGHT HUGS

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Misophonia is worse with overstimulation.  When Lydia is feeling triggered, she will often come get a really tight hug from me.  The squeezing is helpful in reducing sensation and sensitivity, and calms the nerves.

We also bought Lydia a heavy blanket… these are straight from heaven.   We bought ours here…

http://www.saltoftheearthweightedgear.com

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It is a blanket filled with beads or rock.  They come in various weights and sizes.  Lydia sleeps with hers every night, and the heaviness does the same thing as a tight hug.  It calms her overstimulated nerves and helps reduce sensation.  When she is in a meltdown mode, we will send her to her room to calm down, often under her blanket.

#5.   OVERSTIMULATION

 

We got really focused on the sounds Lydia hates, but the trick is to reduce stimulation while masking the sounds she is triggered by.  Bright lights and lots of noise chaos can make the sensitivity worse. We found these apps that have all kinds of noises… rain, static, chimes, wind…

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We turn down the lights, turn off the t.v. and then Lydia can chose one of these sounds to help distract her from her triggers.  We prefer to have this playing because we want Lydia to be able to manage herself with the most mild forms of intervention possible.  But, many times she still has to eat in a separate room, or use headphones to more thoroughly block sound.  It’s a slow process.  Even our four year old will acknowledge in gratitude the days that Lydia joins us for dinner.

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#6.  NEUROFEEDBACK THERAPY

 

For about a year and a half, Lydia saw a neurofeedback specialist, Rae Tattenbaum.  Here is the link to her practice:

http://www.inner-act.com

We were also featured on a local show, Better Connecticut.

Kara’s Cure: Inner Act and Neurofeedback

 

When the misophonia was nightmarish, Lydia would go at least 2 times a week.  We were able to cut down to once a week, and we did that for a long time.  This treatment did help her enormously, and we saw a huge improvement in her coping ability.  In the beginning,  seeing Rae was the only thing that made me feel like I could raise my daughter, the only thing that made our situation liveable. Once we had things more under control, we began to realize that the neurofeedback was not a long term solution for us.  When we stopped the treatments, she would slowly slip back into misophonia meltdown mode.  Eventually, we felt stable enough to look for alternative answers.

 

#7.   HEARING AIDS

In February, we found a professional who had actually heard of misophonia!  We took Lydia to see  Melanie Herzfeld, an audiologist  at the Hearing and Tinnitus Center in Long Island, NY.

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She recommended a set of hearing aids for Lydia, which emit a white or pink noise.  They help mask all of the small sounds that make Lydia go nuts.  She does not have to wear them all of the time, just when she is feeling triggered.

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The hearing aids have saved us.   I was very nervous about getting them, because they are so expensive and also not covered by our  insurance… but worth every single penny.  We bought her hearing aids one day before we drove from our home in Connecticut to Washington DC for spring break.  It took us eight hours. Normally, this would have been an epic nightmare.   We have been on way shorter trips that have been emotionally scarring for all of us, car rides where I contemplated hitchhiking home.

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She wore her hearing aids and watched movies with her sisters and I talked to my husband in the front seat… It was a miracle, truly.  I had been unable to speak while in a car with Lydia for the last two years.  I was so afraid to believe that it was not some kind of random fluke… but we drove all the way home without trouble, and have been doing well in the car ever since!

 

#8.  PAIN MANAGEMENT

The audiologist also strongly recommended cognitive behavioral therapy with an emphasis in pain management.  She stressed the importance of finding someone who will not try immersion therapy techniques (making Lydia listen to the sounds she hates).  Pain management would help Lydia learn coping techniques to redirect and refocus her attention.

 

We have looked around, but have not been actively pursuing this therapy for Lydia right now.  The techniques in #1-7 have helped get us to such a safe place, we don’t feel it’s necessary right now.  But I also know that things change.  Lydia is going to change.  We will grow and adjust with her, and it’s good to know where we will look next if we need more help.

There are websites and support groups popping up on the internet now that can also be sought out.  Personally, I avoid them, although I am sure they are very helpful for others.I can not bear the stories told in those groups.  Most of them just fill me with heaviness and desolation, wondering if I will raise my daughter and never see her again when she is old enough to leave.  Will she be able to call me?  Visit?  Will she know her sisters and be a part of our lives?  Will she be able to have deep, meaningful relationships?  Love, without feeling tortured?

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I have to believe so.  And while I ache for those that are in that pain now, I am not prepared to be a part of the support group.  I can’t.  Because today, things are ok.   I can only look forward and believe that my daughter will be ok, and I will have the privilege of always being in her life.    But I offer all my love and support in sharing our story here.

And I will contact anyone who needs to hear a person say, “I understand.”

We understand.

 

You don’t ‘fix’ your child, you create the conditions for them to RISE.  

-Shefali Tsabary

Poulin, Meganphoto credit: phyllis meredith photography

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The Sounds of Our Crisis: Living with Misophonia

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Everyone has a trigger… that one thing that will make you go apeshit.  The emotion you just can’t cope with.  The monster you were sent to slay.

Mine is feeling silenced, my voice stolen.  Muted. Dismissed.

So naturally, I have  a child that hates the sound of my voice.  She suffers from misophonia, which makes her go crazy if I talk in the car while she is in the back seat.  She can’t stand to hear me talk on the phone, or converse with Rick downstairs on the couch while she tries to fall asleep.

Is that irony?  Divine cruelty?  God’s stab at satire?

Maybe.  But it also gives me clear direction…it demands that I find a way.   I have a little corner here, my own piece of the internet, and all I can do is write about what is happening with honesty.

I’m scared.  Driving home with my girls squabbling in the car, the fear creeps in.  It makes me angry and I am yelling at them before we have hit the driveway.  We have been together for 4 minutes.

We are emptying the dishwasher, setting the table for dinner.  Lydia stomps down the stairs, on the defensive.  She is singing loudly, slamming things to the ground, shoving chairs into the table, she crashes through the kitchen… the fear grabs me by the throat, and I struggle to maintain calm.

Lydia hisses at Carly as we sit in our chairs, and jumps to her feet quickly, almost knocking over the chair, slopping water out of the glasses.  About five months ago, Carly was added to the growing list of things that provoke Lydia’s misophonia meltdowns.  I take in a few gulps, the panic I feel tightens every muscle in my neck, strangling me.  She grabs her plate and kicks the swinging door in, stomping.  She grits her teeth but it doesn’t muffle the  furious screech.  We all freeze in place.   I put my hand on Carly’s back, and the small gesture of compassion breaks her composure.  She whimpers, and then grunts angrily.  Rick hands me Lydia’s  fork and napkin.  I snatch them from him and storm into the kitchen.   I try not to throw them at her.   She is cowering in the corner,  plugging her headphones into her iPod, turning it up so loud I can hear Bruno Mars damaging her eardrums.  She looks at me with disgust.

It hurts.  I can’t help it.  I feel wounded by her posturing.  Her revulsion.  Her aversion.  It’s an old wound now, scarred over and reopened by her sharp looks and high-pitched screeches over the last 18 months.  It’’s raw right now.  Because she is triggered by Carly too.  And every time she hurts my adult feelings, every time I must reach deep into the best, most mature part of myself to process this hurt and turn it into much-needed compassion for my glowering daughter, I think of Carly.  Her inability to process.  Her young spirit, and what this rejection must be teaching her about herself.  The complexity of the emotions swirling around our dinner table is nauseating.

I retreat to the dining room, and we eat, minus one.  While we eat, I struggle to pull my mind out of the next 10 years.  How will we survive this?  What will this do to us?  What will happen to my little girls?  To me?  I look at Rick, my eyes communicating my desperation.  He tries to ground me into the moment.  “Take a bite.  It’s just dinner,”  his eyes say, pleading.

It doesn’t feel like just dinner, it feels like our whole lives are being swallowed by this crazy, mysterious misophonia.

Sometimes, I can not keep the monstrous fear at bay and  I lose it.  Most of the time, it looks like anger.  I rant. I watch Stella’s eyes widen as she hears, “I’m so damn sick of this shitty behavior!”   The words taste terrible as I spit them out, aware of their sharp edges.     This extra loss of control  must do wonders for all three of my girls’  already tender, aching spirits.  Their appetites.   Being angry with Lydia is like being angry when a wounded animal snarls at you.  She is hurting, I know this.

Sometimes, the tears just roll, drip into chicken orzo pasta, and everyone acts like they don’t notice.

Sometimes, we pretend it isn’t happening.  We spend the meal sharing things we are grateful for in a clockwise, orderly fashion.  Stella gets up, runs to the kitchen, and makes Lydia lift her headphones and give her grateful words so she can report to the group.  The grateful list is building up, the room tightening with tension.

After dinner, when the clicking of the silverware against the plates stops, when the sight of Carly chewing her dinner is gone, when the sound of me taking a sip of water is over, Lydia goes into sweetheart mode.  She is throbbing with guilt and shame, she is not oblivious to the pain she is causing.  She snuggles up to me, she brings me school papers with great marks, she sweetly engages with Stella, offering to help her get her pj’s on. She tries to make Carly laugh.   She leaves us love notes, to smooth out the hurts.

I often find Carly sulking in bed.  The rejection is getting to Carly.  Normally so passive, so unexpressed, so quiet and easily content, Carly is beginning to show her pain.  She is frustrated and pissed off, she cries in an angry fit, kicking at my attempts to hold her.

“She HATES me!  She thinks I am disgusting!  And I am not doing ANYTHING!”

She folds her arms defensively, growling at me.  I try to explain.  But the explaining doesn’t soothe.  I know that, as I ache too.  I feel rejected.  I feel terror about how Lydia’s life will unfold, how she will manage.  I feel the weight of the damage she is doing to her sister, unintentional, but real, slam me in the chest.

Oh my GOD, what are we going to do?

It is not breaking my heart…it is eating me alive.

I think about all the families out there, trying to hold on.  Carrying their own burdens.  Their own hurts.  I am grateful for the health we do have.  That my girls are doing well in school.  They enjoy sports and friends and music and movies.  I think of people I know.  People I know who have children with closed  head injuries.  Autism.  Feeding tubes.  Wheelchairs.  Brain damage.  Schizophrenia.  People I know who have to liquefy their child’s meals and feed him through a straw.  Or are acting like their son’s pancreas, spending sleepless nights on his bedroom floor, praying the numbers go up, one hand ready to summon an ambulance.

These thoughts do calm me.  I do feel genuinely grateful.  I feel relief that it is not me.  And then I cross my fingers, knock on wood, send up a half-hearted prayer.

And please bless that will never be me.

But it does not drain me of my fear.  It does not help me feel capable of handling my own life.  My own daughters.  My own burdens.

I used to have a recurring dream, showing up when I was a small child.  It has haunted me for most of my life.  In the dream,  I am going about a normal day, when I notice that a tooth is loose.  And when I wiggle it, the tooth pops out in my hand.  Horror fills me as I realize that the tooth has come out.  My permanent tooth!  I tell someone… whoever is with me in the dream.  They seem unconcerned.   I dial the dentist’s office.  And while I scramble to tell people what is happening, or make an emergency appointment, my teeth become loose and fall out, one by one.   I feel completely out of control.  Helpless and panicked.  Permanent damage is being done, and there is no reaction, I can’t stop it, I can’t find someone who can stop it.

I haven’t had that dream for many years.  Maybe because I have climbed inside of that nightmare.   I am living in it now.  That feeling of helplessness and desperation.   We are living with something no one has heard of.  There is little known about it.  Our doctors haven’t heard of it.  Psychologists.  Therapists.  The few that know it, can not agree on what it is.  A psychiatric disorder?  A neurological disorder? A hearing problem?  A sensory integration disorder?  An autism spectrum-symptom?  A behavior problem?  The sensation of absolute helplessness is paralyzing.  I have no control.  I have no where to turn.

Why I am writing this?  This private, personal account of what really happens at our house, around the dinner table?

During the summer of 2012, misophonia had already slithered its way into our lives.  It’s presence a snake, coiled and waiting.  Watching us.  I had a sense it was there, but only that unease that comes as a premonition before the strike.   When it struck, here, and here,  I did what most sane, reasonable parents do.  I turned to the internet.  And there, I found almost nothing.  The info that I did find was less than encouraging.  It still haunts me, the things that I read that summer.  About families that can not live together.  About kids who leave home and never come back.  About mothers or fathers or siblings that are lost to each other, unable to overcome these tiny, imperceptible, everyday noises that scratch at Lydia’s brain like nails on a chalkboard.

There was a blog, I wish I could remember the name of it.  One blog.  And the mom who wrote it, posted about her son, and his misophonia.  All of the things they had tried.  All of the medication, and therapies and specialists that were not helping.  About dinner time.  But what left the lasting  impression was one sentence.

“We are in crisis over here.”

It was the most comforting thing I have read about misophonia.   I think of her often, and her willingness to admit it.  The crisis.  “Me too,”  I thought.

Knowing I was not alone was everything.

We are trying things.  We are draining our energy, our time, our savings account, trying to find help.  On the outside, we look like a normal, everyday family of five.  Mini van, soccer cleats, playdates, preschool art projects, birthday parties, piano recitals.  On the inside, if you came to visit, you would see a functioning family.  Home cooked meals, sibling squabbles, love notes, piles of laundry, homework unpacked on the coffee table.

Maybe we are a normal everyday family of five.

And everyone has something that makes them feel out of control.  Helpless.  Terrified.  Alone.

Are we all there?  Walking around with our teeth falling into our palms?  Clinging to the stories of the other people?   Gathering gratitude like seashells in a bucket, talismans of the burdens that we don’t have to carry?

The one thing I can do is step forward.  Use my voice, and say it when I can.

Me, too.   Me too.

To learn more about misophonia:

This NY Times article

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The today show segment, here   Warning:  trigger sounds are played.

Stripping down

When worn properly, the garment provides protection against temptation and evil. Wearing the garment is an outward expression of an inward commitment to follow the Savior.    – (First Presidency letter, 5 Nov. 1996).

The garments must be worn day and night.

Mormons are allowed to have sex, (married of course) swim, and shower without the garments, but they should be immediately worn again, as soon as possible.  The prophet and the first presidency of the LDS church are all old men in their 70’s, 80’s and 90’s.  They are not about to advise women on the pleasures of wearing garment bottoms and getting a period, or having a baby. We figure it out.

They make maternity garments, (belly and boob pouches!) and nursing garments (the boob pouches are designed with flap, to give access to the breast once the nursing bra comes down).  They come in different fabrics, and necklines.  I found them all to be drastically uncomfortable.  I was painfully sensitive to lace, and even the simplest styles had trim that rubbed me raw.  It was always hot, even in the winter months, wearing an extra layer under my clothes.  I hated the way the fabric bunched up around the underwire of my bra, and caused my bra straps to slip around.

I hated sleeping in them, I hated golfing in them, I hated never being able to undress or dress in a locker room at the gym.

But, despite the physical discomfort, I wore them diligently, faithfully.  I tried so desperately to embrace the life of a married mormon woman.  I read material about the garments, their sacred nature, the blessing I would get from wearing them.  I taught young, impressionable preteen girls about the importance of wearing temple garments.  I told them how sacred and special they were.  I left the church on those particular Sundays always wondering if they recognized how resolved I was in convincing my own heart.   I wanted my new husband to see me as a valiant, faithful woman.  I wanted Heavenly Father to validate my efforts with a boost of faith.

 Visiting the Oakland Temple

After our daughter Carly was born, we moved to California.  I became pregnant with Lydia just six months after Carly’s birth.  As I  fed and cared for one baby girl, and grew in my womb another.  My spiritual crisis flourished, growing as fast as the new life inside me.

 

Garments are worn as a reminder of the covenants and oaths taken inside the temple.  They are to serve as a constant reminder of who you are, what your purpose is on earth, and the morals and standards you are striving to live.  They keep you dressing modestly and behaving accordingly.  Putting the garments on your body is like dressing in the armor of God.

These were the true reasons the mormon underwear was hard for me to wear.

 

It was an oppressive,  constant weighing reminder of who I was – a latter-day saint (LDS).

 I would step out of a shower in the morning and stare at the blurred outline of my body in the fogged up mirror.

 I was disappearing.

I pulled the garments on, and the woman in the mirror became visible as the fog cleared.  She looked like all the women in my life…my mother, my grandmother, my aunts and cousins, my ancestors.

 It felt like chain mail under my clothes.

 My underwear was immutable evidence that I was trapped, encapsulated in fraudulence.  I hated when Rick would see me in them each day, knowing my garments were a reassurance for him that I was doing it.  I was complying with the temple promises.  It felt like a bold face lie.

I wanted to fall asleep at night, his skin and my skin unsheathed from our armor…my raw self and his.  But it was against the rules, to spend a night sleeping in our bed, holding onto each other without the barrier between.

The lightweight cotton was becoming so heavy, I could barely get dressed in the morning.

 

It seemed that each passing day, as my belly grew larger, so did my discontent.  I had managed to avoid buying maternity garments while pregnant with Carly, eeking by with my regular sizes and the nursing garments afterwards.  But this second baby, fast on the heels of the first, changed my body quicker.  The garments became uncomfortably tight, rolling up over my abdomen.  Rick would ask me almost daily if I had remembered to order maternity garments, and I would always respond with, “tomorrow.”  I couldn’t bring myself to do it.

 

I had respect for the garments, for the people who wear them, for their sacred and spiritual meaning for my loved ones.  And there came a point where I could not put them on.

 I had outgrown them.

I only had a month or two before Lydia would be born…  I sat on the edge of my bed, Carly calling for me in her crib, and I could not put them on my body.  I stopped wearing them.

 Rick began to ask about it as gently as he could, and I would shrug it off, as if I simply forgot. Both of us knew forgetting was not possible.  I could feel his fear building as the force of our spiritual storm began to build and take shape.   I would try to be nonchalant, tell him, “tomorrow,” and almost gag on my words.  His disappointed eyes and my guilt filled me up like wet cement.

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In that last month, Carly, with her imploring blue eyes, would lift my shirt and pat my bare belly, press against me.  She would squeeze my fingers and leave wet kisses on my cheeks.  My daughter.  My little girl, watching my every move.

And inside me grew a fierce and fearless Lydia, straining against my insides, running out of room, ready to come into the world and become.

 

And… there was…me.

 

A burgeoning woman who knew that the time was coming. The moment where soon, I would no longer be able to hold myself in.

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In the green of a blooming spring, amongst the awakening world, it happened.

I gave birth to us both.

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Sound Gratitude

“We can only be said to be alive in those moments when our hearts are conscious of our treasures.”
― Thornton Wilder

It’s August.

Late August.

 Which means that we have made it one year here in Connecticut.  The thick humid air, charming old houses, light summer nights ripe with singing wildlife, it has me feeling unanchored in time.  The trauma we went through last year is blinking back at me in blimps and flashes… like post traumatic stress disorder.

We moved.  People do.  But during this time, our daughter Lydia, always a child who struggled with sensory sensitivity, burst into a new and life altering mania.  She hated sounds.  Specific sounds, like chewing and swallowing, and sounds of speech, especially S, T, K, P and C.

She hated these sounds, when they were made by me.

 Her mother.

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 This suddenly made every day life a harrowing ordeal filled with angry tantrums and sudden outbursts of rage.  I could barely communicate a simple “it’s time for dinner” without her falling to the floor screaming.  She flinched, grimaced, covered her ears, kicked her feet, jumped away defensively like she had been burned.  She would stomp around loudly and hum, crash things together, sing obnoxiously loud, anything to drown out my sounds.

 

Lydia has Misophonia.

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Desperate, we turned to the internet for help, and the things we read about Misophonia devastated me.  Completely eviscerated me.  The scarcity of good information and the personal accounts were awful.  Stories of families that can no longer live together, or live in the same household but in isolation from one another.

  “My little girl is ill.  Our lives will never be the same” played in my head, a vicious mantra.  No one I talked to about what was happening  would validate my devastation. In well-meaning ways they suggested  it was simply a discipline problem, perfectly normal considering the transitions the move had forced upon my daughter.

That wasn’t it.

Car rides were a nightmare.  Meal times were a nightmare.

And bedtime made me ache.  Even now, the sight of her summer pj’s has me reliving some of those nights with painful sharpness.

 Just a few weeks into our move, I went in to get the girls to sleep for the night.  I decided to just breeze through it, act nonchalant…not expect a battle.  Be positive.  I took some cleansing breaths, trying to wash away the day’s earlier traumas.

I entered with a smile…and the moment I said “hop into bed and I will read you a story” Lydia screamed and cowered on the bed, kicking her feet angrily in my direction.

Palpable disgust radiated from her expression.

When I turned wordlessly to walk away, not knowing how to bear it, she crawled to the end of the bed and hung on my waist, sobbing.  She begged me to stay, and I could feel how rejected she felt as thickly as her disgust, two emotions that I simply did not have the tools to carry together.  I smoothed her hair and wiped the  tears off my face with my sleeve.

I tucked Carly in first, she complied despite the fear I saw in her blue eyes.  I did not dare whisper, so I signed “I love you” and touched my lips with my fingertips, and then hers.  I tucked Lydia in next, and repeated the sign language.

This silent communication  was not a comfort to me but a physical act that seemed to be shredding our futures together.

 I turned away and she grabbed my hand.  She whispered “Im so sorry mommy.”  She tugged me closer.  I climbed into bed with her, pulling her against me, I held her tightly, buried my face in her freshly washed hair, and wept silently until she slept.

*****

Today, my girls are in Vermont with my in-laws once again.  They are enjoying all the brilliant fun of summer at Grandmama and Grandpapa’s  house…the pool, learning flips on the trampoline (gasp) and eating icecream at the fair.

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 And I am here, with Rick in Connecticut, swimming in memories.

 

But, with the PTSD flashbacks comes gratitude, washing over me in great waves.

 

1.  By the time we settled into our new home in Connecticut, my inability to communicate with Lydia had reached a crisis stage.  Rick and I would pour over internet information at night, searching for a tiny glimmer of hope.  We found a post on a message board.  A woman and her son, in Australia, claiming they had found success with a very specific type of neurofeedback therapy.  She cautioned that it must be this specific form of biofeedback, as she had tried many others that had failed to work.  One positive story, one mother who had not been forced to live in silence or away from her child.

Gratitude.

2. We had just moved to a small town, in a small state.  What are the odds we would be able to locate a therapist that performed this type of specific neurofeedback for our child?  I was skeptical.  And we found Inner Act, run by Rae Tattenbaum, a woman who specialized in this neurofeedback.  Her office is less than two miles from our home.

Gratitude.

3. For the first 5 months, I brought Lydia three times a week.  The minute we opened her office door and Rae would inquire about our day, I would crack open, and weep.  Every time.   But it started working.  I was able to kiss Lydia goodnight.  Ask her about homework.  Take her to buy soccer cleats.  Eat (sometimes) together.  We pared it down to twice a week, and eventually, once a week.  Rae saved us.

Gratitude.

4. Lydia has not had regular therapy from Rae since early June.  When summer came, our schedule went.  We’ve been traveling, visiting family, going to summer camps and beaches.  I had hoped the progress we had made was permanent.

It was not.

Lydia is now showing signs of sensitivity towards her sister, Carly as well.   We have not eaten a meal as a family, in the same room, for well over a month.

But I know there is hope.  To get her back to a place where we can manage.  We can be a family.  I will not lose my daughter.  We will find a way to maintain our bond.  There is hope.

Gratitude.

 

5. A few days ago I found out that the young neighbor who used to babysit for us in Colorado has been diagnosed with misophonia.  I called her mom…

Oh, the cathartic nature of a talk with someone who truly understands.  I can not express my gratitude to Lori enough.  She also shared with us that she has found a new therapy… hearing aids that help decrease the sound sensitivity.  Her daughter has found immense relief.   I can’t wait for tomorrow, to seek them out.

 And then maybe,  I can have dinner with my baby.

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Gratitude.

Sound Hysteria

“The ache for home lives in all of us, the safe place where we can go as we are and not be questioned.”  -Maya Angelou

We were homeless the whole month of July 2012.

During our cross country move, we spent some time on the shore, waiting for a million flying puzzle pieces to fall into place. My brother from New York came to visit us and stay in the beach house a couple days after the Lydia’s first major voice-induced tantrum, found here.  He is a much loved uncle, one of my greatest supports, and amazing with the kids.  Gardner was a welcome distraction from the mounting tensions in our little “moving vacation.”  I picked him up from the train station alone, filling him in on the move and the situation developing with Lydia.  He was quick to reassure me that it was just the move aftermath…I just needed to show patience and love.  He stayed with us for three days.  On the third day, Rick had begun his new job and I had to take the three kids with me to the train station to drop my brother off. I made every effort to make the drive easy for Lydia.  I handed them cue-ball sized gobstoppers on a stick.  The treat was a true vacation prize,  the smooth shiny surface inviting their little tongues to bore a hole through the center.  It would take weeks to eat. Genius!   I turned a movie on that Lydia in particular would enjoy, and we were on our way.

Within a mile of our ride, every time I spoke, Lydia would react.  Five minutes into the drive, she politely demanded that I stop talking to Uncle Gardner.  Annoyed, I told her that she had a movie to watch, candy to lick, and I wanted to talk to my brother.  I was not going to sit in silence for the 45 minute drive.  She interrupted me constantly.  She began seething, spit bubbling between her gritted teeth as she hissed at me.  She made fists at her sides and began ramming into the back of Gardner’s seat with both feet.  Gardner tried to intervene, reason with her.  I tried to discipline her.  I got more firm, and then angry.  Finally, I was silenced.  Tears streamed steadily down my face, desperate and impotent.  I was white knuckling the steering wheel, anger towards her behavior was furiously fighting to be unleashed.

When we came into town, we had intended to get some lunch.  I needed to ask my brother what he preferred to eat, the exact time his train arrived, if he had time.  During these necessary exchanges, Lydia lost it.  Completely.  She was suddenly a feral animal, tied down in the car with us.  She bucked and screamed like she was being beaten.  Carly and Stella burst into bewildered tears.  Lydia screeched in panic.  She kicked the seat in front of her so hard I thought she would puncture the leather.  “You hate me!”  She roared, over and over.  “I know it!  You HATE me mommy!  YOU.  HATE.  ME!”  she screamed it like she was fighting to the death.  My anger quickly became horror.  Her words shredded me.  I choked on my anguish, my throat throbbed. I drove into a strange city I was about to get lost in, I was lost.

“I hate me!  I don’t want to be me!  I hate myself!”  She howled and then wordlessly screamed.  I found a street off the freeway and pulled the car over.  I turned to Gardner in despair.  “What do I do?”  I risked speaking, totally lost and fighting panic. Carly, her nine year old sister, lunged forward in the car. “We need to get out of this car right now and leave Lydia alone!”   Of course.  We all scrambled to the sidewalk.  I threw Stella at Gardner after rescuing her from her carseat.  I walked back to the van, opened the door, and risked speaking to my rabid daughter.

“I love you Lydia.  We will wait here for you.”

The door slid firmly shut, muffling her animalistic fury.  Exhaustion and fear for our future burst like fireworks in my mind.  We stood hand in hand on the sidewalk, and she raged in a way I did not know was possible.  The car shook.  I shook.

It had to happen.  I had to hear her tell me I hated her, that she didn’t want to be her, for me to understand.  This is not a discipline problem. The sound of my voice is an assault.  My little girl can not bear the sound of my voice.  The enormity of what that means for her life, my life, our family …swallowed me like a giant hole in the ground.  Gardner slumped  on a store front stoop, the shock glittering in his eyes. My body held the small hands of my two year old and eight year old daughters as we stood on that sidewalk,  but my spirit lay down flat and wailed. An unbearable something stood on my bared throat, its weight crushing my voice, our silent barrier pressing me into the hard concrete.

When Lydia finally emerged from the van, still sobbing, fists clenched at her sides, the world was not the same.

Home is in the loving arms of mother…we had lost our home.