Tag Archives: feelings

“The Mean Voice” – Facts vs Feelings

Posted on January 22, 2015 by | 33 comments

“You get to write about thinking feelings are facts,” Emma typed this morning.  Then she smiled at me, got up, and walked away.

Eight months into this whole homeschooling thing and I’m just now starting to figure out how I can work this blog into our busy schedule.  Emma wrote the other day that she would write a blog post once a week or, she thoughtfully added, “suggest topic for you to write about.”  Then last week she wondered if she might ask questions that she hoped readers would want to respond to.  The first of that series with all the wonderfully considerate, insightful and thoughtful comments and answers to her questions from readers, can be read ‘here.’

My goal is to carve out time Tuesday and Thursday to post something on this blog.  Only time will show how well I do with this goal.

But for today, Emma has given me an assignment.  “You get to write about thinking feelings are facts.”  When she typed this sentence I immediately thought of “the mean voice.” This is the voice in my head whose sole purpose seems to be to give a running critique of everything I’m doing and why it’s all wrong.  The Voice is harsh and can be very, very cruel.  It will say things to me that I would never say aloud to another human being, no matter how angry I might be.  The Voice feels real, it says things in a matter-of-fact way that makes me think the words it is saying are true.  When I believe The Voice all joy is deleted.  Any glimmer of hope is snuffed out.  The Voice tells me I suck and whatever I’m doing sucks.

But I’ve come to understand that The Voice is not to be listened to, which is easier thought than done.  It does not tell me the truth, it is mean and it says things that are not based in fact.  I call it “The Voice” but in fact, it is fear.  It is hopelessness.  It is anger.  It is a whole medley of emotions, some of which I cannot even identify or untangle to identify.  The Voice is feelings and it is most certainly not “fact”.

Feelings are not facts.  Feelings are not facts.  This is something someone said to me early on in my addiction recovery.   It was one of those “slogans” that at the time made no sense to me.  Well of course feelings aren’t facts, I remember thinking to myself.  Anyone knows that.   They’re feelings.  But what I didn’t know then and what I still forget now, is that when I’m upset or scared or angry, the conclusions I come to as a result of having those feelings are also not facts.  They are feelings and the two are very, very different.

So for example, if I’m afraid to do something that I really want to do, like write this book that Emma and I are working on together, I feel tremendous fear.   The Voice kicks in and will say things like, “What the hell are you doing?  Why are you even trying to do this?  The last thing the world needs is a book written, even co-written by you.  Who are you to write about your experience with this?  Who do you think you are?  No one wants to read what you think.  You think this will be helpful to someone else?  What kind of narcissistic, self-involved crap is that?  You can’t do this.  You suck.”  If that doesn’t stop me in my tracks The Voice amps it up a notch and gets even more vicious.

People have suggested imagining a volume control dial and mentally visualizing turning the volume down.  Others have suggested saying, Thank you for your thoughts and then doing the thing I’m terrified of doing anyway.  Others have said – just don’t listen to it or don’t believe it.  But none of that has had much impact or made a difference.  Logically I know this voice isn’t real.  It’s in my head.  I know it isn’t some divine, all-knowing voice.  I know it is mean.  I know all these things, but when the emotions come it is like being pulled under and the energy it takes to keep my head above the water, the energy it takes to just breathe is exhausting and sometimes, most of the time, I don’t feel able to fight it.

When I was an active addict The Voice told me to go and eat.  Go ahead it would say.  Oh go on, you deserve it, The Voice would encourage.  You’ve had a tough day, give yourself a treat, eat a dozen doughnuts.  If I fought it, it only got louder and more insistent.  Oh go on, GO ON!  And I would.  I couldn’t refuse.  I felt out of control and helpless.  I felt unable to stop.  Now, almost two decades later, I know to “out” that particular voice.  I know to tell on it.  The Voice doesn’t like that.  And saying to another human being who understands, who can identify, who can say – oh yeah…  wow, I so get that – is often all it takes now to give me that moment of grace so that I can pull away and not do that thing that will hurt me, the thing that it’s telling me to do.

While The Voice is usually no longer the boss of me when it comes to food and compulsive over-eating, it has never completely gone away.  It crops up when I least expect it.  It tells me things about myself that make me feel awful.  It makes me believe it’s telling me THE TRUTH.  I’m fifty four years old and I still find myself believing The Voice, not about food and eating, but about other things, healthy things I want to do or accomplish.  There’s another slogan used in addiction recovery – Progress not perfection.  And I am making progress, but it is very, very slow.  And to be honest, far slower than I’d like.  But then if I gauge myself from where I once was, the progress has been nothing short of miraculous, so maybe the next post will be about – progress, not perfection!  Unless Emma has another idea, that is…

I’m turning Emma’s topic over to all of you – “…write about thinking feelings are facts.”

The Mean Voice

The Mean Voice

33 Comments

Posted in Autism, emotions, Parenting

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An Autistic Child is Murdered

Posted on November 6, 2014 by | 45 comments

Another Autistic child has been murdered by one of his parents.  This time it is a six-year old, little boy named London McCabe.  London joins a growing list of Autistic children who have been murdered in recent years.

A psychology professor who runs an “education” group for mothers of autistic children in California said, “quite frankly, I am surprised this doesn’t happen more often.”

Wow.

“I am surprised this doesn’t happen more often.”

The casual nature of this comment stunned me.

She then went on to say, “These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated.”  This horrifying statement is untrue, but beyond that, the suggestion that if our feelings are not reciprocated, it makes sense that we become murderous, is to make us so narcissistic, so incredibly monstrous as to be unbelievable.   This is Bruno Bettelheim’s famous “refrigerator mother” theory reapplied to Autistic children and it is just as awful in this new version as it was in the original.

Most Autistic children feel love for their parents, just as most non-autistic children do.  Even when their parents behave horribly toward them, even when they’ve been treated with contempt, ignored, bullied, ridiculed and publicly shamed by those who say they love them, even then, most children still love their parents.  As they grow older many may have more complicated feelings of despair, abandonment, become distrustful, anxious and terrified.  The idea that Autistic children do not feel intensely is an outrageously, misinformed idea.  Just because someone does not reciprocate in a way non-autistics understand, recognize or expect does not mean the feelings do not exist. 

It is extremely disturbing to read such a statement coming from someone who is treated with deference and as though she is an authoritative voice on the topic of autism and Autistic people.  This professor is one of a number of people who has a degree in psychology and has made inaccurate, misinformed and mistaken statements about autism and Autistic people, yet none stop to ask what the psychological damage is to the Autistic children and adults they demonize with their incorrect statements, not to mention the impact such statements have on a misinformed public.  Unfortunately, few seem to be asking any questions about any of this or even bothering to find out if such statements are true, including the newspaper that published her comments.

There is an increasing number of Autistic men, women, teens and even younger people who are writing about their experience of life, their relationships and the world.  I am surprised when I meet someone in the field of autism who does not follow at least some of the blogs so many Autistic people are writing.  The Resources page of Emma’s Hope Book has dozens of links to Autistic people’s writing.  The first 28 blogs listed are written by non-speaking Autistics.  One of those people is my daughter, Emma.  After a presentation Emma gave in New York City a few months ago, she and I had the following conversation:

Emma:  I hope people will question what they have been told.
Ariane:  I do too.
Emma:  Horrible ideas about people, cause many to do terrible things…
A little later in that same conversation, Emma typed, “Worry and fear are fueled by furious words spoken harshly.  Humor soothes, shining sunny rays spreading hope.”

As the mother of an Autistic daughter who cannot communicate fluently with spoken language, but communicates beautifully by typing, I am continuously shocked by the inaccurate information that is rampant on the topic of autism and Autistic people.  Yesterday Emma typed, “Understanding that all human beings want connection is natural and fundamentally human.”  And last week Emma wrote, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

For people who do not have the ability to communicate with spoken language and/or have sensory issues that impact each individual differently, expecting them to respond the way people who do not have any problem speaking and have never been assaulted by their environment, is relying on a false idea.  It is this false idea that continues to misrepresent so many.  It is this false idea that serves to hurt Autistic people.

The psychology professor told NBC News that mothers do not have the experience of their love returned by their child.   “That is one of the most difficult things for mothers” she told the reporter.

If this were true, it would be hard.  Years ago, when I once believed a great many things about my daughter, that I now know are not true, it was an awful feeling.  But it is far worse to be that child who loves, but is believed incapable of love.  It is far worse to be so thoroughly misunderstood, to be constantly misrepresented in public, to be thought so problematic that people sympathize with the mother who murders you… that is far more horrific than anything I will ever experience in this world.

London McCabe

London McCabe

45 Comments

Posted in autism experts

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There Once Was A Girl…

Posted on August 13, 2013 by | 28 comments

There once was a girl who was in tremendous pain.  Her pain was so great she couldn’t manage it.  She tried, believe me, she tried.  She immersed herself in books, particular those dealing with people’s neurology, but also dabbled in science fiction, mysteries, thrillers, horror, romance, this was before the age of memoirs, so she devoured studies of other people written by psychiatrists, therapists of every ilk and doctors.  Losing herself in reading was thrilling, but it didn’t help her sort through the intense feelings she had.  All those books couldn’t begin to heal her often overwhelming feelings, anxiety, sadness and fear.

She thought that moving away might help so she did that, and then she moved farther and farther still and eventually she found herself living in another country and all those intense feelings moved right along with her.  By this time she was using substances to quell the pain, on a daily basis.   She knew she could zone out and for a little while anyway she would feel nothing at all and it was a great relief.  But as soon as the substance wore off she was left, once again, with herself.  She went from seeking relief, to needing relief, to feeling that if she didn’t do those things that gave her even momentary solace she might die.

There is no other way to describe what she went through when she could not indulge in certain behaviors.  SHE WOULD DIE.  She did not know this for a fact, but she felt sure that she could not exist without the things that changed her consciousness.  She was convinced that these substances helped her cope and that without them she would not be able to, and all those feelings would overwhelm her, suffocate her.  She lived in terror of this.  Years went by and she did the best she could, but her need for calm and peace was never satiated.

As time went on she knew that if she was going to continue living in this world she would have to change, she would have to find other ways of coping, of just being.  And again her fears both mesmerized and caused her to stay stuck doing the same things again and again that now did not give her the relief they once did.  She knew in her heart she would die if she continued doing what she had been doing.  She knew it was only a matter of time now.  The thing that she once thought was keeping her from dying, was the very thing that would kill her.  Still, how to change?  What could she do?  How would she stop?

At first she sought help from doctors and therapists and the medical profession.  She tried the various things they told her to do.  She made charts and ate specific foods and took supplements and lots and lots of vitamins, but nothing she did made a difference.  She went to psychologists and talked and talked, for years she talked, and while that helped her understand some of what ailed her, all that talk didn’t help her stop hurting herself.  One therapist, someone who loved her very much and had been trying to help her for many years said to her, you must find others who do what you do, they will help you.  So she found them.  Hundreds of people just like her who did the same things she was doing.  They listened to her pain and shame and they nodded their heads and told stories of their own and they said, “Here. Grab our hand.  We will help you.  We will show you the way through because you cannot do this on your own.  This isn’t about will power, this isn’t about desire, this is about needing help.”  And so she did, though she was filled with abject terror and was not at all sure she would be able to follow them, she did.  They taught her to breathe when she was scared and they took her calls in the middle of the night and they came to her when she was too frightened to leave her apartment and they sat with her when she was too overwhelmed to move.  They taught her that she alone could not help herself, she needed others.  This was both a great relief and also her greatest fear.

Over time she learned to tolerate all those feelings she once believed would kill her.  It was incredible!  She could not believe she was able to sit with feelings!  This was a revelation and she grew stronger and more able to be in the world.  She learned to ask for help and she found some people were safe and others were not.  She learned to be in a relationship with another person and to respect them and to honor their boundaries and she experienced the joy of kindness and acting in kindness for no other reason than because it was a part of who she was – to be kind.  She experienced the joy of helping others who were in pain and came to believe there is no greater gift in this life than to offer a hand to another being who is in the depths of despair and pain.

(To be continued)

28 Comments

Posted in Addiction, fear, Gratitude

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Mistakes Will Be Made

Posted on February 12, 2013 by | 18 comments

Over the weekend something happened.  I did something I regretted.  It was one of those “jokes” that isn’t funny.  One of those things that afterwards you wonder why you ever thought that was even remotely funny, because it wasn’t.  Instead it was hurtful and nobody thought it humorous.  I immediately apologized, but my apology wasn’t enough to make the hurt disappear.  Apologies are like that.  They’re certainly better than nothing, but they don’t erase the regrettable action.  So there I was holding this child who was understandably upset because I did something without thinking or stopping to ask myself “is this a good idea?” “If someone did this to you, would you think it funny?” I felt terrible.  The child felt terrible, but allowed me to tell them how sorry I was.  They allowed me to hold them.  They allowed me to witness their upset and it took everything in me to stop talking, to give them the space to feel their feelings without tramping all over them with words.

“Aw….”  Emma said as she embraced the child.  “_____’s upset,” Emma said, looking at me with concern.  “_____’s sad.  He wants to go to Sydney’s playground.”  Emma was doing her best to make sense of the situation, citing a playground long ago closed.

“No, that’s not it, Em.  I hurt ____’s feelings and….”  I looked over at Richard.  “Well I shouldn’t have done that,” I finished.

“Aw….”  Emma said again, wrapping her arms more tightly around the other child’s torso.  “It’s okay.  Take a deep breath.”

“I’m okay.  Thanks Emma,” the child said.

“Aw…” Em continued.  “Here.  Take a deep breath… It’s okay.”  Em looked over at me and said, “Then time to do yoga!”

It was one of those moments.  A moment where there are lots of feelings, lots of different emotions.  Sorrow and remorse for doing something hurtful to another person.  Proud of my daughter for being so kind.  Concern for the hurt person’s feelings.  It was one of those moments when you know you’re never going to do it all beautifully or elegantly or even well, but that you, like everyone else on this earth does things you wish you hadn’t and you can sit with that and hopefully learn from it so you don’t repeat it.

I watched Em hugging this child.  I watched this child feeling their feelings and I knew the biggest apology I could give was not one of words, but of honoring and respecting their feelings, without trying to undo or change or make light of it.  I know, once I make a mistake, I must not make more mistakes in an attempt to cover up the original one.  Once I make a mistake I have to own it.  I have to acknowledge the other’s feelings and respect them enough to give them space and the time they need to process, while being there if they want or need me to be.

As a friend of mine said –  if you don’t want someone to have bad memories of you, don’t do things to give them any.

Nic reading to Em – January, 2013

Nic & Em

18 Comments

Posted in Autism, forgiveness, Parenting

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From Anthropological Duty To Love Or Things Not to Say to Your Sister-ln-Law by Kis Brink aka Gareeth

Posted on November 29, 2012 by | 14 comments

What follows is a guest post by Kis Brink (for those who follow this blog you will know her as Gareeth).  When she sent it to me, I was so taken with its insights, the power of her writing that I asked her if I could post it here.  Kis gave me her permission for which I am honored.  It was this piece by Kis that inspired yesterday’s post:  Yes, These Are Things I Think About, What About You?

“Love is a very controversial word in the history of autism. Hurtful ideas that autism was caused by the failure of parents to love their children and equally as hurtful ideas that autistic people were incapable of loving were put forward. Many still believe them. For me love was something I learned over time and it is still a word I use cautiously and sparingly. I do not say, “I love you” unless I am sure. The word is never used to express a strong preference for something. I think love is like many other aspects of Asperger’s and autism where our take on it may be slightly different but this in no way renders our love less real. It took time for me to learn this though.

Society has rules about love. Who you should and shouldn’t love. Who you should love the most and so on. I like rules. I wrote about my adherence to them and creation about them in a previous article. As a child when the word love was mainly a word devoid of emotional content I had no problem meeting the norms for when to use it. It was only as my range of emotion increased that this became a problem. 

Anyone who knows me well knows that unless you are prepared for honest answers don’t ask me a question. I know some people with Autistic Spectrum Disorders who have learned to use socially useful lies of the kind society expects. While seeing how they may be handy in many situations not only is this against my rules, I even have theory about why this is wrong.  I tell those unfortunate people trying to help me by explaining that sometimes you need to tell small harmless lies that I do not believe there are degrees of truth. I expect that some autism experts would be quick to label my thinking on this topic black and white thinking, but it is the way I think. I tell people trying to convince me it is useful to lie that I don’t believe in white lies. To me there is truth and non-truth. This is the reason why I must think very clearly and sometimes long on what may seem like a “no-brainer” to most people.

“An everyday example of something I give more thought than others is the simple, “How are you?” that comes up everyday. I have even concluded from experience that most people’s automatic answer of fine is seldom the truth. This whole ritual seems illogical to me. If you care about the person you then have to ask more questions to determine what the truth is and if you don’t, well to put it bluntly, why ask in the first place? I know it is a normative behavior in our society.  How this applies to love is it is also taken for granted that you will love your family and any offspring they produce. This, I think for most members of my family, would be reasonable. The part that gets me is, it is assumed that the onset of this love will be immediate. I don’t do immediate love. It seems illogical to me and perhaps even untruthful although it may be the truth for those who say they do. I have questioned some people on the subject but have yet to get a clear enough sample for a definitive conclusion.

“This brings me to the subtitle of this piece: Things Not To Say to Your Sister-ln-Law. I’ll say right off the bat that I am lucky to have an extremely understanding and kind one or looking back I suspect I provided ample opportunities for our relationship to grind to a complete and permanent halt. Almost ten years ago now my first nephew was born. He was in fact the first member of the next generation for our branch of the family tree. I was happy for my brother and sister-in-law and glad to be a Fasta (Danish for father’s sister). Society however expects more immediately. It seemed no one else had any reluctance to express love for this new scrap of humanity. I live some distance from my brother but planned a trip to see this child for the summer.

“When my nephew was four months old I made the trip to see him. On the coast I had been spared much questioning beyond his height and the usual things like that. I had none of his other kin to compare myself to. I had a new role as a human and I was going to figure out what it entailed.  The first night of my visit after my brother went to bed, my sister-in-law and I were in the kitchen together. She asked what I thought of my nephew. It was a question I was still working on internally. I had these vague feelings that I could not quite name. I didn’t feel it would be correct to call these new feelings love at that point so I commented that I felt a sense of responsibility and commitment to the first member of the descending generation. This was a concept I had learned in anthropology that, to me, seemed to best sum up what was happening inside of me.

“Well it was quickly apparent that this was not quite the answer she had been expecting. I don’t remember if she was near tears or merely frustrated or both when she told me, “You know it’s okay just to love him.” This didn’t really make sense to me. I suspected I would grow to love him. I had hopes about what our relationship would be like. I knew people love their nephews and nieces and that his other aunts and uncles were able to say they did without batting an eye. I went to my room feeling frustrated and confused. I had been looking forward to being a Fasta and it seemed I was already messing up at it.

“People have called me a kid magnet. Children seem to gravitate towards me and enjoy being with me. I enjoy them as well. Despite the fact that my nephew was only 4 months old I did feel a certain sense of pride as I observed how well he kicked his legs around at the gym-toy babies have for kicking. I felt more feelings which I couldn’t identify when I looked at him sleeping, I even took my friends in to admire the marvel of him asleep. Maybe if I didn’t have autism I would have concluded that all this did in fact constitute sufficient grounds to say I loved him.

“Pictures taken at that time with he and I show a softening in my face that is positively maternal. Journal entries reflect a marvel for even his simplest behavior. I spent a lot of time walking with him in the neighborhood, thinking about all the things I would teach him as he grew older. I felt equipped to handle my anthropological duties towards him. It was only when others spoke about him that a fear in me would surface that I was an inferior brand of aunt. That no matter what I had to teach him and how fierce my desire was to protect him until I could repeatedly say how much I loved him in a conversation I would not make the grade.

“Fortunately time passed. My own range of breadth of feeling was on a steep learning curve at this same time. With each subsequent visit I moved closer to knowing I loved him. I started to be able to do some of the things I had imagined. He learned to speak and could express marvel over issues that I did not really expect a child so young to notice or have thoughts about. One day at the zoo we passed the exhibit that explains poaching. I thought that he was way to young to really understand how bad it was and tried to explain it in a way that would make sense to him, but when his eyes filled with tears and he asked why repeatedly I knew he had a special soul. A soul that would require more diligent protecting and nurturing than I had thought.

“There were other signs in those days. He had an obsession for whales. One Christmas everyone seemed to know that they had better get him some form of whale or not even bother with a present..  All seemed well in his world until he opened up a whale that had the wrong color tongue. Most of us were surprised that he knew so much about so many kinds of whales but his action regarding this whale was decisive. Into the garbage it went. No amount of explaining that it was wrong to throw out a present or offering to correct this error would convince him that something horrible had not happened. He asked the perennial question of childhood although his whys were a little more detailed. Why would someone even make a model of a whale and not get the tongue color right. Well the kid had a point on that one.

“One day a few months after his maternal grandfather had died my sister-in-law phoned to report what he had said at pre-school. It was the final and convincing evidence I needed to conclude that his soul was so special that not only did I love him with all my heart, I was prepared to do battle against any who might attempt to hurt this soul.  His pre-school had a no-violent-toys rule that was enforced quite strictly. A boy had ignored this rule and had a toy sword with him. My nephew told him, “Sword all you can while you are young, because you can’t take your sword to heaven because when you go to heaven you are flat.”

“Well the first two parts of what he said amazed me. The part about being flat also made sense in the context of his life. His grandfather had been cremated and scattered in the mountains. This is where the flat notion came from. I couldn’t have been prouder of him if he had discovered a cure for cancer. I thought and felt all the things that I had worried about not feeling for the first few years of his life. I rushed to get the exact quote and pinned it to my bulletin board in my most sacred spot – right above my computer. I listed his age and his title: Philosopher and Theologian.

“I have always identified with the song by Don McLean, “Starry Starry Night.” The line where it says, “the world was never meant for one as beautiful as you” hits home to me. When the world hurts mostly because it fails to understand people like myself and people with other differences I think of this and there is some comfort in the idea that it might be a question of being an excessively beautiful soul for the world in which we live. I knew immediately that my nephew too was one of these people and any last question about whether the feelings that had strengthened overtime qualified as love vanished.

“Yes it was a journey to this point. Not a love that I could say I felt with confidence on his birth but this does not make it a conditional love. I love everything about him. Many of my happiest hours are spent in his company. His excitement when I come, hearing him brag about me to his friends, his joy in the simple things in life would make any aunt proud. I know longer worry that my brand of “Fasta-ing” (pardon the creation of a word) is inferior. It is clear from his response that it is not.

“This Christmas he bought gifts for other people for the first time. About mine he kept saying it was small but precious. I had no doubt that it would be. Like myself he too seems to need symbols to represent people who are absent and his feelings for them. I was delighted to receive a piece of pyrite from him on Christmas morning. He has one similar to it. I told him that I would keep it by my bed the way his was so we would both always be reminded of our love for each other as we fell asleep and woke up. I hardly need reminding at this point though. Still that once mysterious feeling of love fills me completely when I look at this precious stone and contemplate the beautiful relationship I enjoy with my nephew.

“For those of you who may have relatives with high functioning forms of autism, when they give you not quite the answer you expect, I hope you take into account our unique perspective on the world. Particularly in the realm of emotion we may be embarking on a whole new voyage. I feel so lucky to have a sister-in-law who could forgive my atypical response, who brings it up now and then with humor, but especially for having a nephew with a soul so beautiful he brought me into new waters.”

Emma reading her favorite book – The Way I Feel – 2008

14 Comments

Posted in Autism, Autistic Role Models, love

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Dionne Warwick, Somersaults and Feelings

Posted on March 8, 2012 by | 3 comments

Every morning after her breakfast, Emma listens to music, which she dances and sings to.  This morning she played Dionne Warwick.  Emma has choreographed specific dances for specific songs and in one she has even incorporated a series of somersaults; it’s a kind of Cirque Du Soleil goes disco moment.  When one of us dances with her she will sometimes dance with us while laughing, but just as often will turn her back or, as she did last night yell, “No Mommy.  Sit down!”  So horrified was she by my undulations.  At other times she will hold an arm out in front of her with her hand held like a shield blocking her eyes from us, although I think from her perspective we are the ones being blocked from her.  We’ve made a game out of this and will dart around her so that we are within sight while Emma shrieks with laughter.

“She wants to engage with others,” one of the many specialists noted during an evaluation when Emma was just three years old.  “No one can teach a child that.  You’re way ahead of the game.”

When Emma was first diagnosed I read about how autists are unable to understand emotions and have little if any desire for interaction.  I then reached the conclusion that were this true Emma didn’t feel the full range of emotions we neuro-typicals do.  But I quickly found this to be false.  In fact, I would say the opposite is true.  Emma feels the full range of emotions available to any of us in high-def.  I have seen the look on her face when she thinks she will get to see one of her cousins, but is told they are not coming after all.  Emma’s feelings get hurt, she feels tremendous disappointment, she prefers being with her family more than anything in the world, she finds comfort in specific people just as any other child does.  She has favorite friends at school whom she seeks out.   If anything Emma is an extremely sensitive child, just as her brother is, the difference is she isn’t able to talk to us about her feelings, at least not yet, and the way she conceptualizes situations may be different, I don’t know.  What I do know is that Emma feels a great deal.  Her feelings are easily hurt, she feels tremendous frustration, disappointment, sadness as well as happiness, joy, excitement, anticipation and love.

Before Joe took the kids to a giant indoor water park two weeks ago, Emma said, “I’m so excited!  Mommy and Daddy come too?”  Her full range of emotions were obvious in those two utterances.

Regarding our IEP meeting yesterday – thank you to all who reached out.  These meetings are never fun and this one proved to be no different from the rest.  We did insist that Emma’s sensory issues be noted, though we were told the words “sensory diet” could not be used as they were a specific methodology and therefore could not be included in the report.  We found this somewhat baffling as a sensory diet is not a “methodology.”  It’s a bit like saying someone’s wheelchair is a “methodology,” but rather than quibble with them, we made sure specific references were made throughout her IEP, which should help, if anyone actually bothers to read it.  At least they didn’t say – “Oh yes, I see here that she eats a limited number of foods,” which was what was said to us several years ago during another IEP meeting when we spoke of the need for a “sensory diet.”

I will end with a series of Prepper acronyms WTSHTF (When The S**t Hits The Fan) at least we’ll have our BOB (Bug Out Bag – enough supplies to last a week or so) or at the very least our GOOD kit (Get Out Of Dodge) so that we’ll be prepared for TEOTWAWKI (The End Of The World As We Know It).  I am not making these up.  They exist.  I swear.  Gotta love that.  And for all of you as amused by The Donald’s (TD’s) “hair” as I am, he claims it is NOT a weave, though some have speculated that it’s a “double comb over” (DCO) which is one of the funniest things I’ve ever heard, so I’m going with that theory.  I promise I’m done.  OAO.  (Over And Out.)

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Posted in Autism, Parenting, sensory issues

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Feelings

Posted on January 6, 2012 by | 2 comments

Emma’s friend, Charlie was upset yesterday.  No one knew what was wrong or why he was so sad.  However Emma went over to Charlie and comforted him.  These are the kinds of things parents are always pleased to hear.  As our children grow older, we come to expect such displays of empathy, even questioning our children when they do not respond this way.

In 1985 Simon Baron-Cohen developed a theory he called mindblindness, suggesting that children with autism have an impaired ability to make sense of others and their own feelings.  He has since amended mindblindness to E-S theory (empathizing-systemizing theory.)  Many people, when confronted with an autistic person’s inability to acknowledge or respond appropriately to their emotional state, assume that person does not care.

Before Emma was diagnosed, I learned of a friend’s death and was crying.  Nic ran over and immediately asked what was wrong and why was I crying, while Emma continued to look at a book.  At the time I thought she was more interested in her book or perhaps didn’t notice I was upset, but I remember feeling a certain uneasiness about, what I believed was, her lack of empathy.  As I have read more about autism and the problems in reading people’s emotions, I see her non-responsiveness as an inability to make sense of  my emotional state rather than indifference.  As Emma grows older, she has become increasingly curious about emotions of all kinds.

“Rip Good Night Moon, make Becky angry.  No you cannot rip Good Night Moon!”  Emma has said, referring to something that happened well over a year ago at her school.  One of Emma’s favorite books is “The Way I Feel.”   A book describing emotions with illustrations reflecting those feelings.  When Emma’s brother Nic is upset Emma, much to Nic’s annoyance, will attempt to make sense of Nic’s upset. “Nicky’s crying.  Nicky wants to go on the carousel,” Emma will say.  Or “Nicky’s angry.  Nicky doesn’t want to go to bed.”  Emma will apply her own reasons for being sad or angry with things that make her feel those things and becomes confused when we explain that Nic is upset or angry about something entirely different.  Still, she is doing her best to make sense of what she is seeing.  She will almost always try to comfort Nic, even if she has come to incorrect conclusions regarding the reasons for his feelings.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

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Posted in Autism, Simon Baron-Cohen

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