Tag Archives: Self Injurious Behavior

What To Do When Someone Hurts

When Emma was just two years old she was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified or PDD-NOS, which is the “it-may-be-autism-but-we-can’t-be-sure-maybe-she’s-just-a-bit-different-so-let’s-just-wait-and-see-what-happens-before-we-say-it’s-autism” diagnosis.  Two years later, Emma was diagnosed with autism.  But in 2004, when Emma was given her PDD-NOS diagnosis the neuroscientists, Kamila and Henry Markram, had not come up with their Intense World Theory for Autism.  The idea that Autistics have a brain that is far more sensitive to all stimuli than non autistic brains, was not something people were talking about.

Emma has since told me that she can “hear” people.  When I asked her what she meant by that, she wrote that she could sense people’s emotions and inner turmoil.  She could hear their moods.  I have been told and read similar things from other Autistic people.  This is something Barb Rentenbach also talks about in her must read, book, I might be you.  Now add to the intense sensory sensitivities that ebb and increase suddenly and without warning, lights, noise, touch, smells, tastes, feelings and you will begin to understand how overwhelming and unpredictable life can be.  Or, as Emma wrote last week, “On Monday a noise is pleasant, but on Tuesday the same noise is not pleasing to me.”

Yesterday, Emma wrote about what happens when she bites herself and the things others can do to help, as well as the things people do that make it worse and it made me think about my reactions to seeing my daughter hurt herself.  I can go through a fairly quick series of feelings.  I might feel scared, oh, no!  She’s hurting herself, this is terrible, I have to make her stop! and concern mixed with confusion, what can I do to make her stop?   But I also may feel other things too, like a desire to control the situation, annoyance and embarrassment that she is screaming in a public place, stress and overwhelm from the tears and her obvious upset, feelings of inadequacy that I should be able to help her more than I am, wondering whether I am a bad parent, believing that if I were a “good” parent, she wouldn’t do these things.  Questioning my own reactions, worrying that if I don’t force her to stop, people will harshly judge me or criticize me or believe I don’t care that she’s hurting herself.  Or maybe the situation is also stressful for me and I’m also in overwhelm.  And on it goes.  But as Emma wrote, “I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.”  So if I don’t spend the time to think about and become aware of what I’m feeling as I witness her, I will react in ways that actually exacerbate her overwhelm.

I am once again reminded of my car ride with my beautiful, friend Ibby while visiting her in Chicago this past December.  I wrote about that ride ‘here.’  What Ibby did was such a perfect example of what I needed, though I did not realize I needed it and could not have asked for it, had I been asked – what do you need?  A calm, loving voice, carefully telling me what was going to happen next and why, a calm loving voice coming from someone who genuinely loves me, who I know has no agenda, was not trying to control me, whose words and concern were completely for me, with no other motivation than to truly be there for me… this was what Ibby gave me during that car ride.  Ibby did not try to take away my feelings, she didn’t try to control them, she wasn’t judging them, she was calm, patient, accepting and above all, incredibly kind and loving.  And, by the way, Ibby could not stop the noise the wind shield wipers made, it was not something that was within her control, it was snowing hard, she could not drive without them, yet even so, what she did instead made all the difference in the world.

It seems so simple, it seems so obvious, but it is actually quite rare to have someone do this for another.  So I will end this by encouraging all who want to know what they can do to help someone who is deeply distressed, examine your feelings, really look at them and make sure you understand what you are feeling before you attempt to help another, because if you’re becoming upset with someone else’s upset, anything you do will cause the other person to only become more upset.  Until I can get to a place of having “helpful thoughts of calming kindness.  Reassuring words of understanding, instead of irritation and impatience”  my response will add to the other person’s overwhelm.

*I just have to add here, this is something I find very difficult to actualize.  It is a work in progress, but it is vitally important.

Ariane & Emma ~ 2011

Ariane & Emma ~ 2011

Emma Discusses Biting

Emma bites herself, occasionally pulls her own hair and less frequently will smack her head into the wall or punch herself in the face.  I hesitated writing about this on such a public forum because… well, because it is so public and people come to this topic with a great many strong feelings.  But Emma asked me to “put it on the blog” so I am, though with some ambivalence.  I ask that anyone who chooses to comment do so with the love, care and compassion you would hope others would have for you, were you to talk about things that are so deeply personal.  I will just add that Emma is incredibly courageous and I have nothing but admiration for her desire to speak so publicly about a topic that brings up so much distress for so many.

I asked Emma if she would be willing to discuss what is going on when she bites herself.  This is something that has happened nearly every day at her school this past week.

“I am anxious about angering those who are watching, but can’t control my aching feelings of distress.

“Biting my arm is helpful in giving those difficult feelings a pain I can control.  Getting mad at me makes it worse.

“Trying to force me to stop does not change how badly I feel, just adds to shame I already have.

“I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.

“Fear takes over.

“Stress becomes impossible.

“I need helpful thoughts of calming kindness.  Reassuring words of understanding, instead of irritation and impatience.”

*I asked Emma if she could sense people’s emotions and if that added to the overload.

She wrote, “Yes, it makes it worse.”

Emma ~ 2011

Emma ~ 2011

Related Posts:

 Self Injurious Behaviors ~ Let’s Discuss

Different Neurology, Different Perception

Michael Scott Monje Jr.

I want to introduce all of you to Michael Scott Monje Jr.  “Michael Scott Monje, Jr. is a graduate of Western Michigan University with an MFA in Creative Writing and a BA in English and Philosophy. He’s also autistic, a fact which everyone overlooked until he was in his late 20s.

Michael has a blog, Shaping Clay where he writes about a great many things including – Autism, Human Rights, Gender, and where his serial novel, Defiant can be read.

Mike’s novel The Mirror Project, a Sci-Fi psychological drama about artificial intelligence forces us to consider what happens when we create a being that cannot be “controlled” or forced to do as we bid.  There are moral and ethical implications, but more to the point, The Mirror Project is about oppression, our responsibility to not only each other, but to ourselves, and how we must relinquish the desire to control, in favor of encouraging and supporting one another’s independence, which in turn benefits the entire human race.

The artificial intelligence created is called Lynn, the name of the creator’s dead wife.

“Lynn’s existence is continuously dictated from without while she struggles to articulate the damage that her creators are doing to her.”

It was impossible for me to read this novel and not highlight the similarities between what Lynn ponders and what, I can only imagine, many who cannot easily access language or who have difficulty synching their mind with their body, must wonder.  Lynn asks early on “…what is the soul if it is not the constant awareness of the desolation of your own existence?”

Later Lynn protests the way she has been treated, “That attitude will open the door to all kinds of rationalized brutality on your part.  You might even break me and change my behavior permanently, but you will never be able to know that you did the right thing.  You’ll have to live with the idea that literally every experience I have for the rest of my life might be re-traumatizing me.  There’s no rationalizing that. You either refuse to create the situation in the first place, or you admit what you’re doing and accept the cost.  Could you accept the cost and live with yourself?”

Nothing’s Right is about a year in the life of an Autistic boy who must navigate the messy and painful maze of growing up in a family whose neurology differs from his own, a school that does not even attempt to understand him and a world where he is seen as the sum total of problematic behaviors.  Nothing’s Right has some of the most brilliant and haunting passages depicting “self-injurious behaviors” that I’ve ever read.

If you are not familiar with Michael Scott Monje Jr.’s writing, it is time you were.

You’re welcome.   🙂

The Mirror Project By Michael Scott Monje Jr.

The Mirror Project By Michael Scott Monje Jr.

A Training with Soma Mukhopadhyay

I am taking a four-day training that Soma Mukhopadhyay is giving this week.  Yesterday was the first day and Soma covered the stages of development and different learning styles.  Throughout the entire day Soma demonstrated how one teaches while presuming competence, though she never said those two words or even mentioned this, it is, in fact, what she was doing.  She does not assume a person she’s never met will know how to read or write, but she does presume that the person can and will learn regardless of whether they speak or not.  Rapid Prompt Method teaches skills that create a strong foundation for all learning to take place.

Soma walked us through stims that are excitatory and calming and how to tell the difference.  She demonstrated how one can work with them and how they give us clues about whether the person is auditory, visual, tactile and kinesthetic.  I asked a great many questions about things such as, what do you do when the person you’re working with hits, bites, slaps or pinches themselves or you.  Later after the training had ended I had the opportunity to work with someone who almost immediately hit themselves in the chest and they shouted, “No hitting!”  Fresh from the day’s training, I grabbed a letter board and said, “Oh here.  Spell hitting.”  I held the letter board out and shoved a pencil in their hand.  Immediately they stopped hitting themselves and pointing to first the ‘h’ then the ‘i’ and so on until they’d spelled “hitting” at which point they were able and willing to move on to do some other things.

Afterwards I reflected on what had just happened and remembered something else Soma did when one of the children she was working with tried to bite her.  I am paraphrasing as I didn’t write down exactly what she said. In a very calm, matter of fact voice, she said something like ~ Oh you’re trying to bite my arm.  My arm is not lunch. What else can you bite?  No judgment, no scolding, shaming or anger, there was nothing in her voice to suggest she was speaking of anything out of the ordinary or that this was something to get upset about.

For years I have been baffled by how to respond or even if one should respond to such actions.  I have written about “self-injurious” actions ‘here‘, ‘here‘ and ‘here‘.  I’ve never completely known how to respond and have responded in a variety of different ways, but today… today was the first day I saw someone model a response in an academic setting that made sense to me.  It isn’t that this response will eradicate the need or desire to hit or bite, but it was the first time I’ve seen someone respond in a way that didn’t make it worse, either by scolding, shaming or reinforcing.  As was the case this afternoon, the child I was with, immediately stopped hitting themselves and we were able to get back to work without further comment.

Today is day 2 of the training and it’s very exciting!

Different Neurology ~ Different Perception

When I began writing about the actions many take that are labeled “self-injurious behaviors” I had some ideas from my past of self harm (bulimia, anorexia, compulsively overeating, etc) about what that might be like.  When my daughter began biting her hand and arm, punching herself in the face or chest, I knew I was seeing something different, but there seemed to be enough of an overlap that I felt I had a small degree of insight into her experience.  But there is a difference between self harm and the actions many take to mitigate external pain such as cluster headaches and the pain brought on by a variety of sensory issues.  Others have described the action of biting, pinching, head banging as a way to center themselves, they describe the calm they feel afterwards and many describe a sense of relief as well as others who say they are able to make sense of space and where their bodies are.  Many described how when the underlying source was treated the desire to bang, punch, bite went away.

Anonymous 1 (who I quoted in yesterday’s post) said, ”When I bashed my head, though, the screaming stopped. It just cut off, and then the pain spread over my entire scalp, like a blanket over my brain.

I couldn’t stop thinking about this sentence.  So I reached out to ask for more about the “screaming”.   Anonymous 1 responded:

I can hear shapes and colors, and sometimes I feel music in a very literal way. Like, slow adult contemporary stuff my mom plays makes me start itching and it makes my clothes feel too tight. The scream in my head works the same way. When I’m having a sensory day, it starts wailing away and makes it hard for me to maintain emotional equilibrium, until I lash out (either through SIB or by becoming verbally abusive to people around me). Similarly, if I’m put off emotionally by something, like someone being selfish, then the scream will start up until I’m scratching at myself and teasing the broken bones in my hand just to give myself a pain-stim that will shut it down.

“If I had to describe it, I would say that emotions are a sense, in the way that sensory issues work for me. They mix with the other senses, bleed into them synesthetically, and the integration issues for both emotions and sensory input have exactly the same process in my head. The act of both of them happening at once, where I can’t focus on just one or the other, produces the scream. Some days, I can clamp down on it and keep it in my head. Other days… meltdown. SIBs. Crying. Fighting with family.”

Anonymous 4 wrote: “I like to bite my arm. I know. It sounds weird, but I love the feeling of the shimmery yellow and blue and white sensation that flows down my arm.  There is nothing like it.

When I read this I thought about how easy it is to assume we understand until someone describes their experience and it is very different from what we assumed.    It seems to me this is an important piece.  I know Anonymous 1 and 4 are not the only ones who have this experience with synesthesia.  Judy Endow discusses how she perceives words through the sound and movement of color.  I have heard others describe variations on this as well.  If ones neurology finds meaning in spoken words through movement, sound and color, it would stand to reason, emotions and sensation would be perceived this way as well leading them to do things that might cause those witnessing it as something to be stopped.  I have to wonder how many, who are in the field of Autism are hearing these kinds of experiences.  So much regarding autism comes from those witnessing it,  people who want to understand, but whose own neurology may make it very challenging, if not impossible, for them to do so.

“Self-Injurious Behaviors” ~ Let’s Discuss

I’m continuing to research SIBs, which stands for “self-injurious behaviors”.  It’s far too complex a topic to tackle in a quick  800 – 1000 word post. There are a number of topics it seems important to discuss,  which all fall under the heading of “self-injurious behavior.” (Feel free to add more in the comments section, this is definitely a work in progress.)   I’ve broken these topics down to include:

  • The language we use to describe such actions.
  • The perception (usually of neurotypical parents, caregivers, doctors, school employees, educators and the general public) of what these actions may or may not mean, this is particularly critical when the person taking such actions is partially speaking or non-speaking.
  • The personal experiences of those who have engaged in such actions that may or may not lead to real injury.
  • The experience of those who want to help and/or are in a position where they may be held accountable for the actions or inactions taken.  (This includes parents who love their child and would do anything to lessen their child’s frustration and pain.)
  • What can be done to help those who head bang, bite, pinch, punch or engage in actions that lead to serious and/or permanent injury?
  • What can be done to help those who head bang, bite, pinch, punch or engage in actions that are difficult to witness, but do not lead to permanent or serious injury?

I will try to cover all these various sub-topics, but first I’m going to tell you a story.

Emma sits cross-legged on the floor in our living room.  Her tutu billows about her plump legs, it’s pink ribbon sash lies undone near her.  In one hand she holds one of my red suede pumps, it’s small round heel directed at her forehead.   Wordlessly she smacks her head with the shoe’s heel over and over again as if she were driving a nail into a wooden plank. 

“ NO!  Emma, don’t!” I plead, running over to her.  I take the shoe from her, kneeling down to survey the damage.   There is no blood, just a small pink mark above her left eye where the heel made contact.

Instinctively I pull her into me wanting to comfort, but she resists.  She stares over my shoulder.  No sign of pain, there are no tears, no distress.  Her face is the face of a perfectly content toddler.  Whatever emotional trauma I imagine for her is mine alone.  She turns away from me and reaches for the other shoe lying a few feet away. 

“No Emma!  You cannot hurt yourself,” I say as though this were a natural thing to remind such a young child.  Bewilderment overwhelms my shock.  Emma stands up and wanders off, leaving me with one red shoe in each hand.

This was how I responded to Emma’s seemingly bizarre actions.  This was how I continued to respond to Emma when she began to bite herself.  This was all I knew to do.  Remove the thing that was causing damage, except that when that “thing” was her own fist or fingers or teeth I was powerless and defeated.  So I begged her, pleaded with her to stop, usually in a loud, panic-stricken voice.  Why was she feeling compelled to do such a thing?  Was it a deep need for sensory input? Did her head hurt?  Was she trying to cope with internal pain caused by some outside source – the daylight streaming in through the window, the heat from the radiator, the clicking noise the steam heat made as it surged through the pipes, was there some noise only she could hear that bothered her, did the fabric from her tutu itch or dig into her skin, or was it something else that I couldn’t see or understand?

I spoke with experts, doctors and other parents, but I never learned how to help her.  I watched YouTube videos and read research articles, I spoke to school staff, psychologists and people who work in hospitals.  Nothing I read or heard about made much difference other than to make me feel even more panicked and fearful.  The language used by those in the field of Autism is almost uniformly fear based and along the lines of deficit thinking.  By saying someone is engaging in “self-injurious behavior” we are suggesting they choose to “behave” this way.  But what if this is actually incorrect?  What if you were unable to make yourself understood through spoken language and had a horrific headache?  What if you could not use words to describe the pain you were in?  What might you do?  What if you felt such a surge of frustration you lost the ability to speak?  What if you could not find something or something broke or the music you were listening to or the DVD you were watching was calming and beautiful and it suddenly, abruptly, stopped or skipped, what if you needed it and now it was gone?    What if the only way you felt better and calmer was by hitting yourself.  What if the very sensation viewed by onlookers as harmful was actually helpful to you?

To someone like my daughter, her response to upset of various kinds is not the response of a child being difficult or bratty or frustrated.  Hers is the response of someone who’s world is coming to an end.  She is in full panic mode.  If she said, “I can’t take this.  I’m feeling completely overwhelmed, I don’t know how much longer I can hold on, I just want to scream and punch something!”  We would nod our heads and say, “gosh I know exactly how you feel!  I’ve felt that way too!  Let’s talk about it!”  We would go over and hug her and she would take solace in knowing she wasn’t alone and the hug might make her feel loved and she might even feel safe enough to talk about it more.  Her situation wouldn’t change, the feelings leading up to uttering those words might not change, she may still feel overwhelmed and not know how to change those feelings, but through talking about them, we talkers have come to see there’s some comfort to be had, because our brains are programmed that way.  This is what most of us, who are more neurotypical than not, have found.  Except that my daughter’s brain doesn’t work that way.  Talking and hugs do not help her when she feels overwhelmed, in fact talking and hugs increase her upset!

In addition Emma’s experience of pain is different from mine and many people’s.  Emma can twist and yank out a tooth within an hour of it feeling even slightly loose.  Emma can have an ear infection that is so bad the pediatrician was incredulous.  Emma can show no signs of illness but is found to have strep throat, caught by her doctor only because we happened to be in his office for a routine wellness check up.  Emma craves sensory input on a level Richard and I find astonishing.  She turns the volume up as high as the TV or DVD player will go of her favorite songs or movies.  We are literally blasted out of the room she is in.  Sensory input is needed at levels we cannot tolerate.  For Emma this isn’t a “behavior” this is a need.  How this plays out when she bites or hits I cannot fully know, but that they do, is something I feel sure of.

Last summer I spoke to my friend Ibby who explained why yelling at Emma to stop hurting herself was not working.  “It’s a lie,” Ib said.  She explained that by telling her she “couldn’t” do something, something she’d just done right in front of me, as evidenced by the teeth marks on her arm, was a lie.   A lie that made no logical sense.  So I stopped saying things like that.  Soon after I stopped yelling at her, I realized that anything I said could be heard as scolding, judgmental and counterproductive, especially when done in a loud voice.  Now that I have a better understanding of language and how language can come and go, I understand it isn’t just Emma’s ability to communicate, it’s her ability to understand all verbal communication.  All spoken language, both hers and anyone else’s goes out the window.

I have to stop talking.  This is counter intuitive for me, but it’s key.  Stop talking.  I have to remind myself of this.  If Emma is in the midst of an upset where she has begun to bite herself, no amount of logic will prevent her from biting mid-bite.  When Emma is biting herself this is an indication to me that I need to be quiet.  Sometimes she will come to me and allow me to put my arms around her in a firm embrace, other times she will reject all contact.  In the midst of an upset I have learned the single best thing I can do is – nothing.  No words, no physical contact, nothing.  I remain nearby and I wait for her to come to me if she needs or wants to.  Once she is calmer, I have a chance at figuring out what led up to the upset… maybe.  Once she is calmer I can try to see if there’s a pattern so that I can interrupt it next time before she gets to the point where biting herself seems like the only solution.

The single most unproductive thing I can do in the midst of Emma’s upset is to scold, admonish, restrain and judge her.  This may seem obvious to many of you, but it wasn’t obvious to me.  Some of the things others have recommended:

Judy Endow wrote:  “DISCOVER AND ELIMINATE PHYSICAL PAIN.  I have worked with many autistics who REAL PAIN and trying to change behaviors is like telling someone you love that you don’t want to know anything at all about their pain and in fact you want them to learn to behave as if they did not have any pain at all! So many behaviors turn out to be physical – one little girl who banged her head so hard it put holes in the walls, caused concussion and wore a locked helmet was discovered to have had head lice for so long that the lice had burrowed so far under her skin she had to have some sort of specialized treatment more than lice shampoo to get rid of them. She had lice for over 3 years before it was discovered due to them burrowed under her scalp!!! Once the lice was gone so was the head banging.”

(Judy Endow has written a terrific work book Outsmarting Explosive Behavior and while she doesn’t mention “SIBs” specifically, the steps she suggests will certainly be helpful for many.)

In answer to my question “Was there anything that helped?  If so, what?”  Kassiane wrote:  “Treating my cluster headaches. Leaving the SIB alone, treating it not just as a ‘mysterious autism behavior’ but as a release valve for stress, & eliminating or reducing the input that was pushing that far. Changing the situation has a much higher success rate than “stop doing that”, because I need a way to cope with the situation that leads to chewing my hand…I dont even notice until I’m a bit…gnawed.

Anonymous 1 wrote:  “I do remember, in those early days, that I liked the head-bashing because I only needed to do it once or twice. I could pound my fists into the dirt until my knuckles scabbed up, but the pain that I felt would barely measure up to the sound of my own screaming in my head. No matter how much I tried to let it out, it just never worked. I would punch myself into exhaustion and fall asleep, still feeling completely trapped, helpless, and alone. I would wake up afterward hearing my own screaming in my head.

 “When I bashed my head, though, the screaming stopped. It just cut off, and then the pain spread over my entire scalp, like a blanket over my brain.

Anonymous 2 described a prickly sensation all over their scalp caused by a new haircut.

Many spoke of the frustration leading up to the biting, hitting, etc.  Redirection seemed to help less serious actions, but everyone, everyone agreed that scolding, punishment or anything that could be viewed as punishment made the punching, hitting, banging and pinching much, much worse.

Having said all of this, we are fortunate in that Emma has never done more than left a mark on her arm or hand.  But there are others who do.  There are children and people who break bones, break the skin, and do permanent damage to themselves.  What then?  What does one do to help them?  What can be done?

I’m afraid I have no answers for these situations.  But whatever the “remedy” or “therapy” being employed, we have to ask the person who is being subjected to these various things if it is in fact helpful and if they are unable to communicate by typing, writing or speaking, we must ask ourselves  –  Would I want to be treated this way?  This is, at least, a starting point.

Self Injurious Behaviors ~ Questions

I’ve been working on a post about self-injurious behaviors for a few days now, but I realized this morning I need some feedback from all of you before I proceed.  If you aren’t comfortable commenting here, please write me at emmashopeblog@gmail.com.  Everything anyone tells me will remain confidential, unless you specifically tell me I may quote you. If you are comfortable with my quoting you, be sure to tell me!

Have you or anyone you know engaged in self-injurious behaviors?  

Can you describe the behavior?

What was done?  

Did it help?  

If not, did it make it worse?  

Was there anything that did help?  

If so, what?

If you have witnessed someone who self injured did anyone speak to you about how you felt being a witness?  If so, was it helpful?  If not, do you think it would have been?

All comments on this topic are welcome, even if they do not answer any of these questions.

Thanks so much and have a great weekend everyone!

Emma’s Self Portrait – 2013

photo

 

 

A Letter To My Daughter’s Teacher

*I’ve never removed a post before.  But I couldn’t get away from the creepy feeling the original post was giving me.  I have kept much of the original content, but rephrased it so that I’m not speaking as though I were my daughter, which I have no right to do, and am instead speaking as her mother, which I am.

My daughter, Emma will be in your class this year.  A few days ago, Emma told me she was “scared to go to new school.”  Emma loved her teachers and friends from her old school.  So I want to introduce you to her.  I cannot speak for Emma, I cannot know if everything I write here is completely accurate, but these are things that I have learned over the years, things that are specific to Emma and that may be helpful, at least that is my hope.

Sometimes Emma does not look at you when you are speaking to her, but that doesn’t mean she doesn’t hear you.  Her hearing is excellent.  She may not know how to process what you’ve said or she may not know what is expected of her.  Often if you ask Emma a question, especially if it’s a question she knows the answer to she either won’t answer or will say something nonsensical because she isn’t sure what’s expected of her or why the question has been asked.  Sometimes people get nervous and don’t know what to say, so they’ll ask, “Oh Emma, that’s a pretty dress.  What are you wearing?”  or  “What color is that?”  These are questions that aren’t being asked for any real purpose or they are testing questions.  Typically these are the kinds of questions Emma will not answer.

Change is difficult for all of us and Emma is no exception.  Having a written or picture schedule for the day and week will reduce her anxiety.  Like everyone, Emma really appreciates having a say in what happens throughout the day.  Whenever appropriate allowing her to set a timer for a one, two or five-minute warning before a change in activity will go a long way in helping her do what she needs to prepare herself.   Usually Emma will go along with any change if she’s given sufficient warning.

General Disposition:

Emma loves people.  She is gregarious.  Her fall back position is one of happiness.  She is also very sensitive.  She can tell if someone is upset, stressed or angry and can become easily overwhelmed by those feelings.

 Particularly good at:

Emma is terrific at leading others.  She can be extremely persuasive and is a great negotiator.    Her negotiating skills are wonderful for math and science and her leadership skills are wonderful motivators.

 LOVES:

Emma loves music, dancing, being on stage in front of an audience.  Give Em a microphone and she will sing and dance.  She loves “talent shows.”  She loves any game involving running, swimming, holding her breath under water, laughing and being silly.  She loves playing versions of “Duck, duck, goose” or as Emma would say, “Raincoat, raincoat, umbrella!”  Musical chairs is another favorite, dance parties, hide and seek, dressing up, bouncing, swinging and going to any playground.  Emma is very athletic and very girly.  She likes cooking and while she won’t eat most of what she cooks, unless they’re pancakes, she will enjoy the opportunity to cook.

Does NOT like:

Emma gets upset if she is told not to do something she has just done.  Example:  “You cannot shout!” after she has just shouted is difficult for her.  Obviously she CAN shout, she just did, with you right there watching.  Telling her she “can’t” is not true and it’s confusing.  Instead say, “You mustn’t shout.” Then in a voice that models what you’d like you can say, “Here is how you can speak instead.”  By doing that, you are helping to give her other choices.  If she is not allowed to do something, be sure to tell her what she can do as an alternative.

Academics:

Emma is fairly new to all academics.  Within the past year she has learned to form the letters of the alphabet and is now reading, writing and typing at a 1st – 2nd grade level, likewise with math.   Emma loves the Hubble Imax movie and her favorite museum is the American Natural History Museum.  She is showing interest in learning about our world, the ocean, the moon, other planets and the universe.  She told me last night that she doesn’t want to be an astronaut though, she said she wanted to be a “singer on the stage!”

Needs extra help:

Emma resists academics.  They are hard for her and she becomes upset when she makes a mistake.  She doesn’t like getting anything wrong.  But if you help her succeed, she will flourish.  If she is reading and doesn’t know a word, give it 15 seconds or so to see if she can work it out on her own, (don’t say “sound it out” or “try again” because she didn’t learn to read phonetically and while she is able to sound some words out on her own, it won’t help her with all those exceptions like limb and thought.)   Emma has a strong desire to learn and an even stronger desire to do things independently.  With your help, she can and will succeed.

Frustration and Signs to watch for:

Emma gets a look of panic on her face.  She may begin breathing with short sharp intakes and she will often talk to herself in a high-pitched questioning voice laced with anxiety. When Emma is overwhelmed she may shut down and withdraw.  She may begin scripting, using set phrases she’s heard. Those scripts may be in context with what’s going on or their connection may not be clear to you, but that doesn’t mean there is no connection, it just means you don’t understand or know what it is.  Emma often has trouble processing her feelings and the feelings of others.  Sometimes she needs help identifying those feelings, just as we all do.  Sometimes she will start repeating things other teachers have said to her in the past in a scolding tone, such as, “No Emma!  You may not __________.  If you ____________ we will take ________________ away!”  When Emma is overwhelmed she has to rely on her scripts as all other words have left her. Try to listen even if the words seem meaningless, she is trying to communicate her feelings of distress to you.  Sometimes she might say, “You have to ask for help!”  This is what she says when she needs help, but sadly this can confuse those who do not know Emma well.  She might also say, “Do you want to go swimming?”  Which means she really, really wants to go swimming.  If you show her on the schedule when she’ll be able to go she will usually calm down.

It’s too late, the storm has hit!

This is not the time to engage in a power struggle.  Emma is not trying to manipulate you or upset anyone.  She is simply expressing her frustration in the only way she knows to.  Sometimes if she’s very upset she will bite herself or punch herself, usually on the hand or arm, sometimes if things are very bad, she will punch herself in the face.  Do not exacerbate this challenging time by raising your voice or telling her “You cannot hit!”  or “You cannot bite!”  or even “We don’t bite.”  (See Does not like paragraph above) Restraining her in an attempt to stop her will not prove helpful either.   Emma bites or hits herself because the feelings of frustration are overwhelming her.  The pain she causes herself by biting or hitting is within her control and is therefore preferable.  It things have escalated to the point where Emma is hurting herself, everyone must try to understand what has happened before things became this derailed and try to prevent them.  Sometimes it isn’t possible, but Emma is trying to cope as best she can.  When she is calmer you can work on helping her find alternate ways to cope.

What helps you when you feel overwhelmed?  What things do you do when you feel anxious, scared or upset and no longer feel you’re able to function?  Maybe the things that work for you will help Emma too.  Remember, be patient.  Showing Emma once or twice will not mean she’s learned, she will likely need to be shown numerous times.  Often there is a sensorial component to her upset.  She is overwhelmed with feelings or a sensation or too many sensations.  She may be tired or hungry, too hot, cold or thirsty.  Sometimes a sensory break will do wonders to restore her equilibrium.

Strategies that work well:

Make it into a game!  Music can be incorporated into just about any activity and can change anything.  High affect and silliness can make something that feels difficult seem fun!

Humor:

Emma loves anything silly and ridiculous.  Silly faces, silly dances, playful interactions, games!  She has specific jokes she likes to play with specific people.   Emma loves to laugh.  She loves to make up word games.  She enjoys taking a word like “uncle” and changing it to “Jungle.”  She will happily tell you that she has a “Jungle Andy and a Jungle Victor.”  Come up with silly word games and Emma will join in with glee.

Things that have a tendency to backfire?

If you say, “You have to do ________________.  If you don’t, I’m going to take __________________ away” will make her upset and anxious.  She will have a hard time concentrating because she will worry about having something she wants taken from her.  Instead say, “You can ______________, but first you need to __________________.”  That way Emma can concentrate on having/doing something she loves as opposed to taking something away.

Emma’s String:

 Emma has a string that she loves.  Please do not take away her string or use it as a form of punishment.  Her string helps her focus and it makes her feel safe.  If you take it away or threaten to she will become completely overwhelmed.  Sometimes, when she is writing or typing and needs both hands to do so, you can ask her to set her string near her or in her lap.  If you allow her to control where she puts her string she will feel safe enough to concentrate and do her work.  Also (a little secret) if you get some string or ribbon and copy her movements in a playful way, you might see and feel for yourself how wonderful it can be and Emma will be delighted that someone wanted to interact with her in a way that she loves.

Food:

Emma does not have any allergies or foods she cannot eat.  However she likes to eat the same food everyday.  Some food looks, tastes and smells strange to Emma.  Please do not make her eat anything she isn’t interested in eating.  Please do not tell her she must finish something in order to have something else.  If Emma shows interest in something someone else has or is eating and it’s appropriate, do allow her to smell, lick, taste or eat it if she wants to.  And please do tell me so that I can find whatever it is and offer it to her at home too.  We will pack Emma’s lunch everyday.

One last thing:

 Assume competence and respect Emma’s process.   Emma can and does learn.  She may take longer or less time than another child, but she will learn.  She is extremely independent.  Show her, help her, let her.   You are her role model.  Emma has dreams, just as we all do.  You can help her achieve those dreams by believing in her.

 I am available to talk, discuss and strategize.  I am here to help in any way that I can.  Nothing is more important to me than my daughter.  Please keep in touch with me.  Please let me help in any way that I can.  There is no detail about Emma’s day that is too small.  Do not hesitate in emailing me _____________ or calling  _____________. 

 Thank you so much,

Ariane

Emma performing at her old school


*The above “letter” was inspired by a form letter Ann sent me by Jene Aviram© http://www.nlconcepts.com

Emma’s Unique Way of Telling Time

“The clock says four and five and seven,” Emma can be heard saying.  There’s a rustling sound and then an audible sigh as she settles herself on the floor six inches away from the “clock,” which is actually our DVD player.  I can just make out the shape of her back.  She’s watching the clock.  Literally.  I roll over onto our cat Merlin, who has taken to curling himself up into a tight ball against my upper body.  The heat he emits causes me to wake in a sweat several times throughout the night.  I’ve grown used to this and am grateful in the knowledge that when menopause hits I will be that much better prepared.  Merlin uncurls himself without resentment and arches his back.  All witchy and halloween-like, he gives me a baleful stare with his yellow/green eyes.  Emma stays put.  “Four and five and nine,” she mutters.

The morning light has yet to reach our northern facing windows.  Richard reaches for his cell phone.  We are inundated with technological gadgets of one kind or another.  iPads, iPhones, everyone has at least one computer, Richard and I each have three.  Despite the fact we do not watch television, there are always several screens of some kind on at any given hour of the day or night.  “What are you doing?” I whisper to Richard.  As if Emma cannot hear me.  As if she will not take this as permission to get into our bed with us.  

“Checking the weather,” comes his reply.

“Eighties.  It’s going to be in the eighties today,” I tell him.  I know this because I’ve already checked the weather and my email and am almost through writing a daily “to do” list having been up since three and four and two, as Emma would say.

Emma stands up and bounds over to my side of the bed, beaming.  “Hi Mommy!” she says in a loud cheery voice.  I am reminded of that commercial where a schlubby looking guy gets up and says in a grumbly voice, “It’s time to make the doughnuts.”  Was that actually an advertisement for doughnuts?  I can no longer remember.  

“I’m getting up,” Richard announces.

Richard’s first novel is being published in the next 48 hours.  There’s been a whirlwind of activity, he received a five star review from a major book reviewer on Tuesday, there’s still a great deal to finalize before we actually have a physical book, his novel, in our hands.  It’s all very exciting and while all of this is going on there are the very real daily things that still need to get done.

“Gotta get back to work,” Richard says as he wanders into the bathroom, turns on the sink faucet and then begins talking to me again.  I cannot understand a thing he’s saying.  The faucet’s running, he’s at least 20 feet away with his back to me.  Seriously?   I so cannot hear you.   Emma is grinning at me like the Cheshire cat and now leaps into bed next to me, while deftly pushing Merlin aside.  This is all done with a certain matter-of-fact-sorry-kitty-don’t-take-it-personally sort of way.

I smile at Emma, reach down to stroke Merlin, lest his feelings are hurt.  “What?” I yell to Richard.

“Never mind.  I’ll tell you when I’m out of the shower,” Richard shouts back.

It’s not even five and one and five.  Or for those of you unfamiliar with Emma’s unique way of telling time, it’s not even five fifteen.  I check Emma’s arm and hand to see if the angry red bumps, the tell tale marks left from last night’s meltdown when she bit herself over and over again, have calmed down.  They have.  In another day they will turn bluish-purple and by the weekend will have acquired a yellowy brown cast.  She pulls her arm away and stares at me.  “Emma’s sad.  Emma want to go to the sprinklers.  I know.  I know baby.  But listen, you cannot bite.  You cannot go to the sprinklers.  Maybe tomorrow,” she says, nodding her head and frowning.

I talk to her about how she can go to the sprinklers after school today.  I tell her we are going to Nic’s school concert to hear Nic play his saxophone this evening.  She smiles.  She begins to hum the song Nic composed last year and played at a piano recital.  Her memory continues to awe.  She hums the exact piece note for note in its entirety.  When she gets to the end, she looks at the clock, “It’s five and three and one.  Do you want to make cereal and toast?”  She bounces off the bed and races into the kitchen without waiting for my reply.

Last night Emma and I went up to the roof before bedtime.  If you look just to the left of Emma’s face, you’ll see the Freedom Tower, more than halfway finished.

My latest piece My Fear Toolkit published in the Huffington Post

Oddities, Quirks and Other Family Traits I’ve Come to Recognize

Let’s just say, for the sake of this post, that we all agree genetics play a role in autism.  (I know – many do not believe this, but let’s pretend we all do because otherwise this post will go off onto so many different tangents I may never get back to what I really want to talk about – inherited traits – and it will require a time commitment many of you may not have or want to give.  So let’s just pretend we agree.  Ten minutes, then you can go back to believing whatever it is you believe, which by the way, this post is not a criticism of, oh God, you see?  I’m already getting side tracked.  Suffice it to say, what used to strike me as alien about Emma, is, I now believe, a version of the genes that have been passed down to her.)  And that, as you’ve undoubtedly noticed, is one of the longest parenthetical sentences ever written.

I am going to keep this personal because I don’t have permission to review my parents various genetic traits, nor my husband’s, though I’m guessing he’d give me permission had I thought to ask before leaving for my studio this morning, but I didn’t and it’s too early to call my mother.  So this is going to be about things I’ve learned and see in myself that I identify with Em.  And by the way, this preface of over 300 words, is a perfect starting point because  I do not think in a linear fashion.  This is actually something I’ve been accused of, not in a oh-you’re-so-wonderfully-creative-in-your-weird-thinking kind of way, but more in a what-the-hell-is-wrong-with-you? way.  For more on non-linear thinking and autism, there’s a wonderful discussion on the blog Wrong Planet.

Sensory issues –  None of mine cause me tremendous pain as so many of Emma’s do, but I do have some.  One benign example is my auditory issues.  For a long time I thought I had a hearing problem because there are certain sounds I do not notice.  If someone calls out to me, but is standing out of my range of vision, I cannot hear them, much to the amusement of both Richard and my son Nic.  Until I get a visual and am able to see them both doubled over in laughter because they’ve been shouting my name for the past ten minutes while I, oblivious, continue to do whatever it is I’m doing, I have no idea anything is amiss.  My husband uses a ring tone on his cell phone which I cannot hear.  Suddenly he’ll start rummaging around looking for his phone and I’ll ask, “What are you doing?”

“My phone’s ringing,” he’ll reply, while I strain to hear his phone, only to hear silence.

I have a friend whose voice I cannot hear.  I literally have to put my head about three inches from his mouth in order to hear anything he’s saying.  I’ve had my hearing checked.  My hearing is all within what’s considered the “normal” range.

I have spoken before of my literalness.  There are certain jokes I just do not understand.  That in and of itself has become something of a joke in my family.  There’s a group of bloggers who participate in an ongoing “Special Needs Ryan Gosling” joke where they take a picture of the movie actor and then write something – like “Hey Girl, how about I deal with Joey’s sensory induced meltdown while you grab that bottle of wine I just opened for you.”  (I just made that up, but am not sure that would actually be a good one, because I don’t really get the joke to begin with.)  Not to be a total kill-joy here, but it’s not a joke I’m capable of understanding and I have to admit, I really wish I did, because all the other bloggers are having so much fun with it and I admit, I feel left out.  Reminds me of how I used to feel in high school.  Laughing along, but not really understanding what was funny.  Though I knew enough to not let on that I didn’t get it.  And I really do have a good sense of humor.  Really.  I do.  No.  Seriously.

For more than two decades of my adult life, I engaged in self injurious behavior.  My self injury was in the form of an eating disorder and in dermatillomania, also known as face picking.

I am obsessive and though I do not have OCD, (Obsessive Compulsive Disorder) I can be extremely obsessive and compulsive around a wide variety of things.  When I find something that interests me, often design related or subject matter, like autism, I become obsessive and will study and work for hours without realizing how much time has passed.  Jewelry design is like that for me and it helps that I have been able to disguise my obsession with it by turning it into a business.

In the past I have used words like alien and other in describing Emma.  But I haven’t found that thinking helpful.  As long as I see her as so very different from me, I abandon my instincts, my maternal knowing, my own quirks and feel almost constantly confused by so many of her actions.  When confused I rely on others who do not and cannot know my daughter as well as I do, to tell me what I actually already know.  Which isn’t to say that any and all advice isn’t helpful or is to be rejected, but more that I need to remind myself, Emma is actually a great deal like me in many, many ways and I need to trust myself more in knowing how best to help her by tapping into my own traits, obsessions and sensory issues.

I could go on and on about all of this, but the point I’m trying to make is that the alien analogy, rather than helping me help my daughter, has actually served to distance me from her.  When I am able to identify and tap into my own oddities I am better able to come up with strategies and ways to help her whether that is in her reading and writing or helping her tolerate frustrations or teaching her life skills.

What do you think?

Latest piece My Fear Toolkit published in the Huffington Post

Frustration, Self Injurious Behavior & Autism

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.

Biting and Other Self Injurious Behaviors – Autism

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

Amusement Parks & Autism – Continued

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

Emma and The Peach Gum

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