Tag Archives: guilt

Once Upon A Time (Part 3)

Part one and two are ‘here‘ and ‘here‘.

So this woman who was once a troubled girl, now the mother to two small children, one of whom was a beautiful little girl with curly white/blonde locks and chubby cheeks and dimpled knees, wondered how she ever gave birth to such perfection.  She was filled with gratitude and felt each of her children were gifts, tiny gifts that she was being given the opportunity to influence and even direct, but who were their own people, with their own temperaments and personalities, unique and wonderful in their own right.  She believed this fiercely.  But do not forget, this woman lived for many years of her adult life, prior to giving birth to her two wonderful children, believing she was bad.  She imagined that inside of her there was darkness, as though there was a bad seed deep within her soul and for many, many years she had tried to purge that badness from her being.  She believed she needed to be “fixed” and that left to her own devices she was fundamentally flawed and that if people got to know her, they too would learn this truth about her and it was only a matter of time before she was found out until others who had once felt similarly about themselves, convinced her that this was untrue.  These people showed her over time that in fact there was tremendous goodness within her and they taught her how to nurture that goodness and how to behave in ways that fostered it and encouraged it to grow and even flourish.

But then, now years later, she saw aspects of herself in her daughter.  Behaviors she used to do, but no longer did.  Her daughter loved to look at photographs and there were a great many to view.  Her daughter liked to sit on the floor with more than a hundred photographs piled in front of her and quickly scan them.  If one was missing, her daughter knew instantly and began to howl in great distress.  The mother watched in confusion as this scene unfurled.  The daughter, perfectly happy one minute, and then in terrible agony the next could not be consoled and would hurt herself by punching herself in the face or biting her hand or arm.  And something inside the mother clicked.  She recognized this desire to control her pain.  It took her back to a time when she needed things to be a certain way and when they were not she felt her entire life was unraveling and that her very existence was put into jeopardy and the only release from the horror was to hurt herself.  There was a kind of twisted logic to all of this, her self-induced pain, a pain that at least she could control, though awful, was not as terrible as her rampant and erratic feelings and somewhere along the way that self-induced pain made her feel she could endure, at least for a little while.

Now here was her daughter behaving, it seemed to her, in similar ways, expressing the agony she once knew so intimately.  She had no words to describe what she was witnessing, but she thought she could feel what her daughter was feeling, the despair, the pain, the fear that if the photograph was not immediately found she might die.  The mother believed this was what her daughter was going through and because she had lived through similar feelings she thought she would be able to help her.  She would provide her with the same sort of safety net she had been given.  A place to land, as it were, a safe space where her daughter could feel comforted, except that the things she said and did, did not provide her daughter with the comfort the mother expected and hoped she would feel.

You see, the mother forgot that her daughter was not a mirror of herself.  The mother forgot the thing that she knew when she gave birth to each of her children – that they were their own unique beings, quite separate and individual from anyone else.  She forgot all of this in her fear and worry over what she was witnessing and imagined her child was feeling and doing.  So she began to look outside herself for answers.  People, many, many people told her that they knew what would help and she listened to them.  These people spoke of her daughter using language all too familiar to the mother.  They used words like “broken,” “disorders,” “pervasive” and likened her neurology to cancer, which to the mother sounded a great deal like what she once thought of herself.  They said her daughter was part of an epidemic and that various methodologies would “treat” her disorder and might even reverse and cure her if done quickly and everyday for many, many hours.  The mother listened to all of these people and nodded her head as these people put into words what she had once believed to be true about herself.

Had she done this to her child?  Had she somehow passed along the worst aspects of herself to this beautiful, innocent child.  Was this some sort of karmic payback for all those years the mother had spent living a selfish, self-involved life?  Was her daughter the direct result of every mistake she’d made?  Was this really how life worked?  She could not believe this, at least not logically.  She refused to believe her daughter was being sacrificed for the sins of her mother.  She refused to believe there was some greater omnipotent power that would cause her daughter so much physical, emotional and psychic pain and yet she was terribly, terribly confused and somewhere she could not fully let herself off the hook.  Somewhere, unconsciously, she believed she was to blame for all that was causing her child pain and turmoil.  And if she was to blame, then she knew she, and she alone must make it right.

(To be continued) contemplation

On Autism, Honesty and the Art of Not Yelling

Be honest.  This is what Richard reminds me when I feel stuck.  Whether its regarding my writing or when we are discussing something that is difficult or when I simply feel confused.

Be honest.

Sometimes it’s easy, like when I feel sad and a little frightened that Richard threw his back out again and is in so much pain he can barely walk or I’m annoyed because while waiting for the subway this morning a woman cut me off and sat in the only vacant seat, forcing me to stand or how happy I felt last night when Nic asked me to watch an episode of ‘Chopped’ with him and then pulled a blanket up around us both and said, “I love this, Mommy.  We’re having a son and mom moment.”  Or the sadness that tempered that joy because my next thought was – Emma cannot say that, does not say that, has never said that and then scolded myself for having had that thought because Emma can and does talk, while so many other kids cannot speak, let alone express more complex thinking.

Be honest.

Sometimes I just want to yell and say exactly what comes to mind, because, after all, wouldn’t THAT be more honest?  I already know the answer.    Not yelling is highly underrated, it seems to me.

Be honest.

I want people to love Emma exactly as she is.  I want people to understand when they meet her that in her short life she has already known more pain and discomfort than any young child should have to feel.  I want people to speak to her as they would any ten year old and not like she’s an animal.

I want people to be nicer to each other, which means I have to do my part.  A recent study came out saying autism may be due to older male sperm.  That evening I said to Richard, “Well that gets me off the hook.  It turns out all of Emma’s suffering is your fault.  It’s a huge relief.”  Luckily Richard loves me anyway, even when I say things like that and replied, “I’m so glad I could help you out with that, honey.”

And he did and does.

I’ll end with the conversation I had with Emma last night, showcasing her negotiating skills, inherited from her amazing dad.


“Yes Emma?”

In a sing-songy voice, she said, “Mommy takes me to the zoo tomorrow?” (It’s from a picture book entitled Going to the Zoo, from the Peter Paul and Mary song of the same name.)

“Not tomorrow, Emmy.  I can’t take you tomorrow, but you and Joe could go.”

“No!  Just Mommy,” she pointed to me and then pointing to herself, she added, “and me.  Go to the zoo together.  Maybe this weekend?”

“Yes.  We can go this weekend.”

“Just Mommy.”




“Time to read a story now.”

“Okay, Em.  I love you.”

“So much.”

(As my mother pointed out after I posted this, this conversation was a perfect demonstration of Emma expressing her desire for a – Mommy and daughter moment!)

To read my most recent Huffington Post, click ‘here.’

To read my guest post on Special Needs.com, click ‘here

The Fallout

I was thinking about how we had to take Emma to the hospital last week because she was complaining about a pain on the right side of her abdomen.  Once there they took an x-ray, told us she was constipated and that we should give her an enema.  Everyone became focused on the “constipation” issue, us included and while I wouldn’t agree to the hospital restraining her and giving her an enema no one said much about the fact that she had a fever and that the pain she was complaining about may have been due to the stomach flu.  That night when her fever spiked, her body burning up and the following morning when she threw up, it was pretty evident that in fact she did have a case of stomach flu, just as her brother had three days before.  But the doctors at the hospital didn’t mention the flu, even though we told them her brother had had it.

What happened in the hospital is an example of how quickly things can derail with an autistic child.  The idea that an enema was considered an appropriate next step for a child with a fever, complaining of a stomach ache who’s brother just had a bout of stomach flu, seems somewhat incredible now looking back.  I don’t know how many people have experienced an enema, but it is not pleasant.  When I was in labor with Nic, I was given one to speed up my contractions.  I was in labor for 38 hours.  I was determined to give birth naturally and it was thought that the enema would help.  I have no idea if it did, but it was both horrific and memorable.  I no longer have any memory of being in any real pain during labor, though Richard assures me I was, but I can still vividly remember the enema.

Emma hates enemas.  She has had many of them.  The minute the word enema was said, she began to cry.  The idea that we were going to allow a group of strangers to restrain her as she tried to fight them off (all the while with a fever and the stomach flu) seemed, if not abusive, damn near.  I just couldn’t give the okay.  I couldn’t.  But then once home I began monitoring her bowel movements and that didn’t seem like a good idea either.  There is so much talk, articles and books have been written about the relationship between autism and GI tract issues.  The whole leaky gut theory adds to the concern that if allowed to continue constipation may even cause neurological damage.  With this in mind the word “constipation” when applied to an autistic child feels loaded and it is difficult to step away from the feelings of panic long enough to gain any perspective on what is happening.

Last night, having, until then, somewhat successfully tamped down my feelings of uncertainty, worry, concern, rage and guilt (there is always the guilt lurking) I came in touch with all those feelings and more.  But instead of feeling each of these things, initially I just felt guilt.  Tremendous guilt that I had begun monitoring her trips to the bathroom, that I hadn’t seen right away that she had the stomach flu, that I had allowed the doctors suggestion that her pain was due to constipation (a hot button for us, as it was such a daily concern for so many of her early years) to override all the other evidence, this was my crime.  And last night, I became judge, jury and prosecutor, the only thing missing was my own attorney.  I forgot to bring along someone to defend me.  Years of blame, years of condemnation came bubbling up as though they had always been there.  As though I hadn’t done any work on any of this, as though blaming myself for Emma’s pain would somehow lessen it for her.  Let me take her pain.  Let me bear the brunt of it.  If only I could, I would.  If only this was how it worked.  Give it to me, just please, please remove hers.  She’s just a little girl.  I can take it.  But it doesn’t work that way, does it?  I can’t take her pain from her.  I have held on to guilt, the feeling that somehow I am at fault for Emma being born autistic, for the pain that causes her, it is somehow my fault.  A kind of mental contortionist, I have found ways to always blame myself.  I thought I had gotten better at this.  I thought I had let go of most of it.  But last night showed me, I have not.  It’s all there, waiting.  Waiting for the first sign of weakness.  This is the fallout.

For more on our journey through Emma’s childhood marked by autism, go to:  Emma’s Hope Book