Tag Archives: self injury

The Mean Voice

Posted on May 7, 2013 | 22 Comments

I have struggled with a mean voice in my head my entire life.  ”You messed up,” “You can’t do anything right,” “You’re a failure”, “What were you thinking?” “Why did you do/say/think that?”  ”How could you not have known?”  When I was young I thought I was the only one who had it.  I believed the voice.  I thought it spoke the truth.  I felt crushed by it.  It was a condemning voice and I thought it would help me become a better person if I listened to it.  I was wrong about that.  These days I don’t allow myself to believe it, but now and then I can’t help myself and those are the days when everything is harder.  Those are the days when the people I love will suffer because that voice isn’t content to stay internal for long.  No matter how hard I try, no matter how much I tell myself I’m not going to repeat those hurtful words to someone else, I end up doing so because self-hatred is never kept completely contained.  Those of us who struggle with self loathing tend to hurt others a great deal, which then feeds our self-loathing.

“Self knowledge avails us nothing.”  ~ Big Book of Alcoholics Anonymous.

Awareness, acceptance, action.  These are the steps I know to take if I want to change my behavior.  These are the things I must do on a daily basis, sometimes hour by hour.  These are the things I stumble over, like giant boulders in my path.  Someone else yelling at me to stop listening to the voices does NOT help.  Someone else scolding me for having hurtful voices in my head only ADDS to my stress and the noise, it does not lessen it.  Awareness – I have to acknowledge I’m listening to the cruel voice.  Acceptance – I have to accept I’m in a dark place, that this is what is going on, that this is my reality in this moment, without judgement, without condemnation.  Breathe.   Action – this is the most difficult piece.  What actions can I take now that I’ve become aware and have accepted that this is where I am?  Often action has nothing to do with any of it.  For me action works best in the form of a small or big act of kindness. If I’m in self-pity or when I have tremendous ego, an anonymous act of kindness is by far the most helpful and centering thing I can do.

Feel the pain of the moment but do not be controlled by it.  Feel the anger/irritation/impatience, but do not allow it to take the lead.  Can I do this?  Can I just allow myself to be?  Can I reach out with love instead of anger?  If the answer in this moment is no, then can I just be silent, without turning my anger and frustration inward?  Can I just do nothing at all until this passes?  These things are easy to write about, but so much harder to practice.  And yet I must continue to pick myself up when I fall and practice what does not come naturally or easily because that other road is one I have been down.  I already know where it leads.

For an expanded upon and wonderful post on the mean voice please visit: hereirawr’s Balance Isn’t a Destination and Gray IS Gorgeous!

Road to hell

 

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Posted in Addiction, Marriage, Parenting

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Frustration, Self Injurious Behavior & Autism

Posted on May 16, 2012 | 19 Comments

To all who reached out yesterday – Thank you.  The feeling of  being overwhelmed that I was experiencing, receded and by the afternoon I was feeling back to my old energetic self.  Amazing how something so simple as admitting out loud how you’re feeling can elicit such an outpouring of support which in turn can transform all those feelings into something positive.  It made me think about how we – those of us who are caregivers and autistics should have a place where we could go to get support, ask questions, a place where we could come together as a community and just be, with no leaders or hierarchy, just a place anyone who wanted or needed could gather and reach out to like minded people.   If such a place exists, please let me know.

Hunter College, here in New York City, is hosting the 12th Annual International Conference in Disability Studies in Education, May 25th – 27th and I will be attending one of the presentations – Autistic and Female:  They say That’s Rare, and so many other things – with Elizabeth J. Grace.  I am very excited!

The program looks fascinating and if I could, I would have liked to have attended the entire conference.  Who knows, perhaps next year I will be able to.

On a separate note, Emma became frustrated yesterday while at school and bit herself.  This has been an ongoing issue, one that began when she was at her special-ed ABA based preschool when she was just three.  A boy bit her, on three different occasions, causing the skin to break and each time this happened we would get a call from the school telling us that this same child had bitten her, that they were doing everything they could to monitor him, but that while it obviously hurt her, no real harm had been done.  Not long after that, Emma began biting herself.

It is horrifying to witness your small child, in such obvious pain, attempting to manage their upset by harming themselves.  Emma bites her arm or hand or in extreme cases will punch herself hard in the face.  We have used a variety of techniques hoping to stop the behavior, but so far none have worked, though she does not bite herself as much as she once did and rarely punches herself in the face any more.

A few weeks ago I reached out to a couple of Autists I know asking for their suggestions and one had some great ideas about things that might help, such as chewy tubes, which we have bags of and had all but forgotten, and having a favorite stuffed animal with her. I decided to ask Emma whether she would like to have a stuffed animal to take with her to school, and while she declined, she did say she wanted to have two chewy tubes in her backpack.  We discussed how when she becomes frustrated she can chew on the chewy tube and Emma nodded and shouted, “I’m so frustrated!” then grabbed the chewy tube I was holding and jammed it into her mouth, gnawing at it furiously.  I took her response as a positive sign.

I don’t know if anyone at her school remembered to remind her about her chewy tubes or if in the heat of the moment they were forgotten, but we will continue to remind Emma that the chewy tubes are with her and she can bite them instead of herself.

Telling her, “We do not bite!”  or “You may not hurt yourself!” while well meaning and said with good intentions has NOT proven remotely helpful.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here‘

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

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Posted in Autism, Parenting, Self Injurious Behavior

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Biting and Other Self Injurious Behaviors – Autism

Posted on September 22, 2011 | Leave a comment

Yesterday Emma came home from school with her forearm covered in bite marks.  I sat down next to Emma on her bed and gently touched her arm.

“You bit!”  She said sadly.

“I can see that,” I said, stroking her arm.

“I want to unlock it,” she said, twirling a scrap of what was once her blanket around and around her index finger.  ”I want cokie,” she added.

I continued to stroke her arm.

“You cannot bite!  Emma!  No biting!”  She shouted.

When Emma is very upset, she begins to script.  In other words she mimics things others have said to her using the same tone of voice and if they have an accent, she’ll say the words with the same accent.  It’s a bizarre experience to listen to your upset child alternate between using someone else’s words, tone and inflections and her own voice, as though she were auditioning for all the roles in a play with an ensemble cast.  Sometimes she’ll throw me into the mix – “Oh sweetheart!”  and then severe and scolding – “You cannot bite!  That is not okay,” with her own pleading, “I want cokie, I don’t want to lock it up,” then the logical, calm tone of a teacher or therapist, “You can have cokie later.  First go to the roof, then you can have cokie.”  Her face crumples up while she fights back the tears, often losing the battle and collapsing into an anguished heap of heaving sobs and cries.

At a certain point, when her frustration, anger and upset become more than she can bear she turns it inward and becomes violent toward herself.  The emotions too great for her to contain, she bites herself, leaving the imprint of a full set of teeth upon her arm or finger or hand.  Once, when I held her arm to prevent her from hurting herself she jerked her other arm away and punched herself hard in the face.  The force with which she did this, took my breath away.

I mentioned on this blog, once before, when I was younger I struggled with bulimia.  A more accurate description would be less a struggle and more a complete and utter surrender to the eating disorder.  A therapist I was seeing at the time talked of the act of vomiting as self inflicted violence and I remember being furious with this description.  I wasn’t being violent toward myself, I was simply pursuing a thinner physique.  But after years and years of therapy and then recovery I came to recognize the violence in what I had done to myself for all those years.  When I see my own daughter hurting herself it is impossible for me not to reflect on those years of frustration and rage.

Emma’s acts of self injurious behavior are expressions of her rage, frustration and there is an added piece to this, I am convinced – the desire to control the pain, coupled with her many and varied sensory issues.  I think the combination is deadly.  But how to help her?

That is the question I have no solid answer to.  For now we are trying to explore other ways for her to get her sensory needs met without hurting herself.  However I know from having engaged in destructive behavior for more than two decades how entrenched and addictive that behavior can become.  There are no easy solutions, but then autism itself is like that.

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

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Amusement Parks & Autism – Continued

Posted on June 17, 2011 | 1 Comment

Emma’s entire system was crashing.

“You have to ask Mommy!  Mommy can I go on the roller coaster with Gaby, please?”   She cried over and over again through screams and tears.

It was heart breaking and anyone with a neuro-typical child would think – oh just let her go on it one more time and then go home.  I even thought this a number of times as I tried to peel her off the pavement where she had fallen in a heap of tears, snot pouring from her nose, her hands made into tight fists while hitting herself in the head, on her chest, legs, arms wherever she could before I, or any of us could stop her.  The biting is horrible because it can break the skin and then there’s blood, and later scabs and enormous angry blue and purple bruises that can last for more than a week, reminding all of us of her agony.  But the hitting – a quick, violent punch to the face is shocking to witness and as a parent, it’s difficult not to feel one has done something horribly, horribly wrong.  How can this sweet, blissful child do this to herself?

Emma waiting for Joe, Nic and Gaby while they ride on the Corkscrew

Richard and I have always said to the children – hitting is wrong.  We don’t do it, we don’t want them to ever do it to each other and until Emma began hitting herself, it hadn’t occurred to us to add – we don’t hurt ourselves.  We don’t hit others or ourselves.  We say it, but I don’t know that it makes a difference.  When Emma’s brain has become set on something, no amount of calm, reassuring logic seems to help her.  No amount of soothing, we just have to vacate the premises.  It’s our only hope.  Kind of like shutting the whole system down, a kind of reboot.  We have tried the other option, which is to let her go on one more ride or do whatever it is one more time and the misery, the abject misery continues.  Like an addict who has to have that drink or that drug even while bringing them no real solace.  There’s no relief to be had at a certain point.

“Emmy it’s going to be okay.  We’re going to go home now.  We can ride the little roller coaster one more time and you can sit with Gaby and then we have to go home,” we told her.

But Emma’s brain couldn’t take in this information it was already in lock down mode.  I gave her a banana to eat and then everyone, our once cheerful little group, now more weary warriors than a family intent on having a lovely day at an amusement park trooped along.  She was able to sit with Gaby on the little roller coaster for one last ride and then we trudged back to the car while Emma kept looking over her shoulder at the wooden roller coaster named Roar.  As we headed home Emma said, “It’s okay, we’ll come back tomorrow.”

“No Em.  Tomorrow we’re going to traintown where there are different rides and then we’re going to Uncle Andy’s wedding,” we told her.

“Different rides,” Emma repeated, sadly.  ”We’ll come back soon,” she said.  There was a wistful tone to her words, and we knew it wasn’t likely that we would ever come back to this part of the world.  But there would be other amusement parks and maybe one day Emma’s massive sensory issues will have abated to such a degree that these kinds of episodes will become rarer.

We can only hope.

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

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Emma and The Peach Gum

Posted on May 13, 2011 | Leave a comment

Last night Emma arrived home in tears.  It turns out she had swallowed a piece of peach flavored gum and her therapist, Joe, who had warned her that if she swallowed the gum he would not give her another piece, wouldn’t allow her to have another.  He offered her two other flavors to no avail.

“No!  Peach gum!” Emma cried when I went into her bedroom to sit with her.

“But Em, you swallowed it and Joe told you, you couldn’t have another piece if you swallowed it,” I said, stroking her hair.

“No!” Emma shouted, tears streaming down her face.  ”NO!  Peach gum!”

“How about a different flavor?  But you can’t swallow it or you won’t be able to have another piece of any kind,” I offered.

“No, no, no, no.  Peach,” Emma insisted.

I often wonder, when Emma is derailed by something, seemingly rather insignificant, if there isn’t a whole series of events – perhaps unrelated – that have lead up to this kind of monumental upset.  It reminds me of days I’ve had, when everything that could go wrong does.  I get to work and my printer won’t scan, the cartridge is out of ink and I don’t have a back up, I can’t remember my password to upload images that have been requested to my FTP site, my merchant account isn’t showing my latest sales transaction, my gem setter calls to tell me he’s chipped a stone, I forgot to bring some documents I need from home, etc.  and then after all that I go home, having put in nine or ten hours of work, tired and grumpy and find a light bulb has blown in the living room. It just seems too much.  Meanwhile my husband wanders in, sees me and says innocently, “Hey, what’s going on?”

Those words are what flip the switch and suddenly I feel nothing but rage.

Is that what it’s like for Emma sometimes?  Only she can’t take a deep breath and explain that her day has been a nightmare of frustrations and mishaps, while the other person nods their head and says things like, “God that sounds awful.  Here why don’t you put your things down and let’s talk about it.”  Or “I know just what you mean.  It’s been a hell of a day.”  Poor Emma can’t say any of those things.  She doesn’t have the words to tell me how she’s feeling she can’t keep it together for one more second, so she just screams and cries and if things are really bad, bites or hits herself.

This morning one of her therapists emailed me, telling me about some of her frustrations at school yesterday.  I thought about how upset she was when she came home and it all began to make sense.  She had a bad day.  I can relate to that.  I have bad days from time to time too.  But I can pick up the phone and rant about it to one of my girlfriends or I can call my husband and tell him or I can sit and try to be quiet for a few minutes, “sit with the discomfort of it all”, as a meditation teacher I knew referred to those moments when it all feels unbearable.  The point is I don’t have to be alone with those feelings of frustration.  I can reach out and by reaching out I mitigate the feelings.

“You were frustrated, you scream, you bite,”  Emma told her therapist yesterday.  Emma was doing what we all do when we’re upset, trying to communicate her feelings with another human being.

Emma on a good day when she was seven.

For more on Emma’s journey through a childhood of autism and how that effects her older brother, go to: www.EmmasHopeBook.com

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Posted in Autism, language, Parenting, Self Injurious Behavior

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Transitions

Posted on September 13, 2010 | 1 Comment

Transitions can be difficult for all of us, but particularly troubling for autistic children.  One of the defining characteristics of autism is an insistence on sameness and routine.  When a routine is disrupted the autistic child suffers.  Anything I write regarding this will be an understatement.  How can I describe the abject terror in Emma’s eyes when she cannot adequately communicate her fears and anxiety?  I cannot.

Emma has had meltdowns, several in a day since we returned home.   They tend to increase in intensity in the late afternoon, early evening when she is tired.  When I examine the behavior it continues to baffle.  Last night was a perfect example.  I was preparing to go out when Emma who was listening to a music video suddenly screamed,  “I need help!”  And then bit herself on her forearm.  The bite didn’t draw blood, but it was hard enough that we could see the teeth marks and it immediately began to swell.  She tends to switch arms and so both of her forearms have bruises on them from previous biting.

“It’s not okay to bite, Emma, I said, kneeling down.  “What’s going on?” I asked,

“No biting!” Emma yelled and then said, “I need help!”

“What do you need help with?” Richard asked joining us.

“You have to ask Mommy.  You have to pull on Mommy’s shirt,” Emma said, mimicking Joe.

“Do you want to listen to a different video?” I asked, confused.

“NO!”  Emma wailed.

“Okay. Emma, you have to take your thumb out of your mouth, so that I can understand you,” I said.

“Mommy, I need help to look for it,” Emma said.

“What are we looking for?” I asked.

Emma got down on her hands and knees and began crawling around on the floor.

“Em, tell me what we’re looking for?” I asked, joining her.

“I think she lost the foam to her earbuds,” Richard said.

“Em, are we looking for the foam?” I asked.

“Yes!” Emma wailed.

It turned out Emma had thrown the foam covering one of the ear buds onto the ground, for some unknown reason.  Once the foam was found, I joked to Richard as I left, “I’m leaving, I may not come back.”

“I don’t blame you,” he said.

“My phone will be turned off, text me if you need me,” I said. When I returned home Richard looked exhausted.

“How bad was it?” I asked.

“Bad.” Richard answered.

After I left Emma went from one upset to the next, she cried about the video not downloading quickly enough, once that was fixed there was a missing photograph.  See “Photographs” for more on this.  And on it went through out the night until she finally fell asleep around 8:00PM.

Looking at my husband, I knew how he was feeling.  There’s the thought of – I just need to get through this next hour.  And once Emma’s fallen asleep the sense that the tenuous shred of hope we both desperately cling to is fraying.

“Do you want to talk about it?” I asked.

“I really don’t,” Richard said.

I nodded.

For more on Marriage go to:  “Marriage (Part 1)” & “Marriage (Part 2)”.

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Happy

Posted on May 19, 2010 | Leave a comment

When she first laughed she was a few months old, lying on her back on one of those Gymini mats that have brightly colored cloth arches where you can hang things.

I found a pink pig, which I hung along side the striped star, the mirror and the bell.

Emma loved looking up at that pig, sometimes reaching for it, more often she’d try to grab the pig with her mouth.  Then she’d bite the pig’s snout and chew on it..   She gurgled with laughter at that pig and we would all laugh along with her.

She also loved when one of us would cover our face with our hands then suddenly thrust our face into hers and shout, “Peek-a-boo!”  Emma would break into peals of laughter and one of her first words was, “Again!”

Her innate happiness is something that has never changed.  She loves life.  And so it is particularly heartbreaking when she becomes frustrated, cannot communicate to us what she needs or wants.  Often this ends with her biting herself, usually on her forearm.  She bites herself hard, causing herself to bruise and she screams and cries from the pain.  It is one of the many baffling things she does.

The first time she bit herself she was three years old.  A few months before, she was bitten by one of the children in her special education pre-school.  I often wonder if that child biting her awoke some untold sensation in her.  I have since read countless cases of autistic children who inflict pain upon themselves.

Her self-inflicted pain is something we continue to struggle with to this day.

This past weekend, Emma ran into her room to watch a Gwen Stefani video (she’s a huge fan of Gwen Stefani).  Within seconds we heard the distinct screams that emanate from Emma when she’s bitten herself.  It is a sound that is unlike any other.

When I went into her room, she was seated on her bed holding her red arm, a set of teeth marks imprinted on the skin.

“Emma, what happened?” I asked.

“Emma bit her arm,” she sobbed.

“Why?  Why did you bite your arm?” I asked.

“No Emma!  You cannot bite!  She bit herself,” Emma said, admonishing herself.

“But sweetheart, what happened?” I asked again.

“Ohhhh, sweetheart.  You cannot bite your arm.”  Emma said, mimicking my tone.  Then more sternly in a scolding voice, “You may NOT bite.  No, not our choice! If you bite, it is NOT okay!”  She continued.

“You must come and ask for help, Emma,” I said.

“It’s not okay!” Emma said, shaking her head.

“Emma, do you need help with something?” I asked.

“Want Mommy to come,” Emma said.

“Is that why you bit yourself?”

“You have to ask Mommy.  Mommy can I help you?”  Emma said.

“Okay, but Emma next time just come and get me.  You don’t need to bite yourself, okay?”

Emma nods her head.  “Okay.”

We’ve had this exact conversation many, many times, with a few variations, but the general gist of it is the same each time.  And each time she agrees to not bite herself again.  And each time she bites herself anyway.

At one point Richard and I decided not to respond to the screams.  It took all of our collective strength to ignore the crying.  She just bit herself harder, over and over again.  It was a brutal test of will and her arm bore the brunt of our experiment.  The bruises an angry reminder of our actions did not fade for weeks.

The trick with Emma is to make anything into a game.  I haven’t figured out how to make her biting herself into a “game”, but perhaps there is a way. Or it may be the answer is to figure out a way to make a game out of needing help.  I will have to give this more thought.

Joe, Emma’s therapist is brilliant at turning things she does not want to do into a hilarious activity.  It’s awe inspiring to watch Joe at work with Emma.

It is Joe who came up with one of Emma’s favorite “games”:  the ‘don’t-you-make-me-come-get-you’ game.  I don’t remember when Joe first came up with this method of getting her to do things she doesn’t want to do, but it continues to work beautifully.

“Emma, time to go to Karate,” Joe called to her the other day.

“No!  One more minute,” Emma said, nestling deeper into the rocking chair.

“Oh don’t you make me come get you!” Joe said in an exaggerated angry/silly voice.

Emma immediately began laughing.  “Noooooo.”  Laughing hysterically she said,  “Don’t you make me come get you!”

Joe made a big show of running toward her, swooping her up in his arms, dangling her upside down, while Emma shrieked with laughter.

Now when we need Emma to come and have breakfast or get dressed for school or any other time we need to motivate her to get going, one of us will say, “Hey Emma, you have to get dressed.”

“NO!  One more minute,” is her usual response.

“Come on, Em.  We have to go! Don’t you make me come get you!”

Squeals of laughter as she burrows deeper under the bed sheets.  And then her little voice says in encouragement, “Don’t you make me come get you!”

If we don’t have the energy to hoist all 70 lbs. of her up and into the dining room, we just need to tickle her and pretend to chase her.

Works like a charm every time.

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