Author Archives: arianezurcher

What Others Had to Say: Love, Overwhelm, Violence

Yesterday I wrote a post entitled, When Upset Turns Violent.  I wrote it hoping for feedback from those who may have at one time, or currently have felt so overwhelmed they strike out and from parents who are on the receiving end of children who become violent.   I wanted to get a better idea of the kinds of support that might be beneficial to all involved.

As the comments came in, both here and through email, I realized a few things.  One was the shared feeling of shame so many felt. Tremendous shame was described by almost all the parents of kids who express themselves violently, as well as some who become so overwhelmed they become violent.  Exacerbating, or perhaps a part of the shame, was the feeling that this should not be spoken of for fear of ridicule, blame and judgment.   Many people remain silent, which serves to further feelings of isolation and disconnect from community.

Another thing I realized as I read, was how both parents and those who are in overwhelm are actually feeling similar feelings of powerlessness and wanting a safe place to go.   I identified mightily with all the feelings described and thought it might be most helpful to reprint a number of the things people have written, both from the comments section on this blog, but also from some of the emails I received.  (For those who asked that I not reveal what you wrote, don’t worry, I haven’t.)   There are too many wonderful thoughts, comments, advice and experiences to publish here in a single post, but you can read, at least some of the comments in the comments section of yesterday’s post and a few that came in on Emma’s Hope Book Facebook page.

What follows is a sampling from some of the terrific comments received.  There are many more and they are all insightful and wonderful.  So please do read the related articles at the end of this as well as all the comments from those who so generously wrote in on this blog.  Obviously, there is a huge need for more conversations like this…

A few quotes from parents –

“I just want a safe place where I can talk about this stuff.  Not publicly.  I don’t ever want to be “one of those moms”  but I want to be able to talk about what’s going on with other parents who know what it’s like.”

” I know what it is to sit in an IEP meeting begging for help for my child with my eye swollen shut and bite marks and scratchs covering my arms.”

“I am scared of ____ and that makes me feel terrible.  What kind of parent is scared of their own kid?  A kid I love with all my heart.  A kid I want to help…”

“It changes you when you live in a state of perpetual fear and not having any place to talk about that makes it  harder.”

“I would love a support group, but not where everyone sits around blaming all their problems on autism and their kid.”

Comments from others:

Emily K. wrote:  “Remove yourself from “their” space but do not leave. Defend yourself but do not leave. Let your child Leave/ escape and do not block his/her path. Follow but do not intrude. Allow space and time do not react but respond in the opposite, we need peaceful and loving parents.”

Autisticook wrote a number of really powerful and wonderful comments, this is but one of them:  “I have given some thought to what I would have needed as a child to cope with my violence. I would like to start with a caveat: first of all, anyone who knows me in real life would be shocked at my description. The only people who believe I can be violent are the people I’ve actually hit. That’s about 4 or 5 people. The rest of the world calls me sweet natured and a good person and empathic and supportive of others. I’m also just over 5 feet tall and present as extremely non-threatening.

Second of all, my parents are still the most important two people in my life. A lot of people in the autism community weren’t so lucky with their parents and have a lot more to deal with as a result. I’ve been incredibly lucky to have such generous, loving people prepare me for the outside world. I have a lot of emotional stuff that’s coming out now that I know about autism, but I don’t blame them for any of it. So here goes: the things I needed as a child and didn’t get.

1. Don’t blame yourself. Don’t punish yourself for not being a perfect parent. I can tell when you feel bad and what I’m learning is that I need to be perfect as well. When I’m not, I feel as if I’m disappointing you and making you feel bad. I want you to be happy with me. But when I make you feel bad, I feel bad as well and that is making me even more stressed out because I’m still learning to deal with my emotions.

2. It will get better. I’m trying to learn how to walk. You can show me how it’s done but you can’t force me to walk. It might take me a bit longer to learn this, or I might do it a bit later than others. But it doesn’t mean I will never learn. I just need someone to show me and teach me and support me. This is as true for feeling upset as it is for walking. Teach me how to be upset. Show me there are other ways of being upset, instead of only telling me the way I have chosen is wrong and leaving it at that.

3. Help me recognise my triggers. I might come home from school cranky and tired and overwhelmed. My brother sticking his tongue out at me might simply be the last drop. If I am not saying much, if I’m curled up in the big chair kicking my legs out, or if I seem to be absorbed in an activity like playing with my toys and not paying attention, it might be because I’m trying to self-regulate and deal with all the stuff that’s coming at me. Help me recognise that this is what I am doing. Maybe you need to learn how to read my behaviour first, like hanging upside down in the chair (vestibular stims) and kicking my feet (propioceptive stims) and the attention on my toys (visual or tactile stims). You’re the adult, so I’m depending on you to explain to me what I’m doing and why. I won’t be able to correct you on your assumptions until I’m an adult myself. So please be careful in learning my behaviour and don’t label it until you’re absolutely sure. It’s also OK to ask my input on this when I’m calm and happy.

4. Allow me a way out. If my self-regulating isn’t allowed, I can guarantee you I will get a meltdown. And once I am in that space, all I can think of is making the thing stop that made me go into meltdown. I only have short term memory and very limited reasoning power when I go into meltdown, so I will latch onto whatever trigger I see in front of me. First it will be my brother who stuck his tongue out at me. And then it will be you for restraining me from hitting my brother. Or myself for being in the way. Triggers triggers triggers. I will keep triggering until the world is empty of triggers or until I am utterly exhausted. So if you hold me down, you’re actually keeping me in the world of triggers. I need a different world that is practically triggerless. But I’m too young to know this, which is why I will sometimes keep following you and hitting you even though you try to remove yourself. Because I want the upset feeling to stop and the only way I know how to stop something is to hit it until it stops moving.

5. Don’t ask me questions. If you want to know how I’m feeling, please ask me afterwards, when I have calmed down and can find my words again. Ask me too soon and it will just be another trigger. I am dealing with my overload, with my own feelings of anger and guilt and frustration and sadness and pain, and there’s so much going on that there’s no room for words. It’s hard enough for me to even understand, LITERALLY understand, what you are saying. Formulating an answer is simply not going to happen. However, if you talk about it with me afterwards, that might be a really big help for me in learning how to understand emotions and how my mind works. I may sound resistant to questioning, but that’s also because I’m afraid of going into another emotional meltdown.

6. Don’t try to distract me. I’m not having a temper tantrum, I’m having a meltdown. Trying to get me to focus my attention on something else means I get even more input that’s getting on top of the input overload and I just can’t deal with that. Fewer triggers, not more. You can try getting me to hit a pillow instead of you, but the pillow isn’t triggering me so I might not listen to that. What’s better once I get that violent is bringing me to a GUARANTEED safe space (I emphasise guaranteed because it needs to be not just a space of your choosing, but a space where I can feel safe no matter what and where I won’t be forced out again). My safe space was the back of my mother’s wardrobe, between her clothes, because even if I had the door to my room closed, people still barged in. Once I’m in my safe space and I know people will no longer ask me questions and I can block out the noises and lights and stim to my heart’s content without someone telling me it’s wrong, I usually calm down within an hour or two.

7. Yeah, it takes that long. Please give me time to process. I will come to you once I’m ready. Because I love and trust you, even if I don’t always show it in a way that you can recognise. Please don’t punish me for not understanding why things went wrong or for losing control. I’m punishing myself already. Trust me on that.

Anon wrote:  “I used to hum to myself for comfort when I was sick (about 7yrs) and my father used to threaten me into silence – it was his ignorance and fear, not malice… but I stopped humming.”

Autisticook wrote:  “It was NOT HAVING WORDS and SO MUCH FEELS and STOP TALKING I CAN’T MAKE SENSE OF THINGS and HELP ME NOTICE MY DESPAIR NOTICE MY NO WORDS HELP ME. And above all just stop stop stop stop stop.”

Ischemgeek wrote:  “Especially big for me was stop yelling at me so I can think and figure out what you want because I don’t even know what you want and why you’re screaming at me I just know you’re screaming and I can’t take it just stop.”

And in another comment wrote:  “For me, violence of the meltdown variety (as opposed to sibling bickering violence, which stopped around age 8) was never so much about getting my way and more about gettingaway, if that makes sense.”

MonkeyPliers wrote:  “I’d be concerned about any child developing the kind of anger towards her- or himself that I learned to have towards myself from not being understood and being accused of “putting on a display” when I couldn’t regulate myself.”

Related articles

When Upset Turns Violent

A number of people have reached out to me privately with questions about how to help their child who is violent.  They fear for their other children’s safety as well as their own, but are frightened to reach out for help because they worry their child will be taken from them.  This is not an easy topic.  If you do not have a child who is prone to violence, it is difficult to imagine what that child is going through.  If you are not and have never been the recipient of violence it is difficult to imagine what that is like.  Similar to self injury/harm this is a hot button topic for many people, not just parents who feel powerless to help their child and feel they have nowhere to turn, but for the person who does not have any other way to express themselves.

So I am asking for all of your help.  If you once were or currently are someone who knows anything about responding to the environment and people in your life with violence, and are comfortable telling me what that experience is/was like for you, please email me at:  emmashopeblog@gmail.com.  Also if you are in a position to tell me what might have helped, what, if anything, might have given you the support you needed/wanted.  Was there anyone you could talk to?  If you cannot speak or cannot rely on verbal speech when upset, were you able to type?  Would that have helped?  Is there anything that might help/would have helped?  Do you have advice for parents?  Do you have advice for those who are under the care of another person?  If you are the parent of a child you are frightened of and want to reach out, please do.  Please describe your situation as best you can, as well as what might be helpful to you.  In other words would a help/hotline (if one were available) be something you would use?  Would you prefer an anonymous support group where you could discuss what you are going through with others?  Would something else be helpful?  Anyone who contacts me will remain anonymous.  Anything you tell me, I will quote as anonymous.  If you prefer that what you write NOT be quoted, please be sure to tell me that.  All names and/or places you tell me about will remain confidential.

I don’t know what can be done, but it seems to me, from some of the stories I’m being told, that something needs to be done/created to help all involved.  Maybe you know of resources that have helped, maybe something you’ve tried helped, maybe there was something/one helped you.  If any of you know of anything, please let me know.  Any and all information is appreciated.  Maybe just talking about what’s going on in a safe place is a start.  You can also write in the comments section anonymously, if you prefer doing that.

Justifying Actions

I just wrote an angry rant.  As I was getting set to publish it, someone tweeted me about something unrelated.  They wrote that in order for people, who may be feeling desperate, to hear what you (the universal/general you) have to say, there is a need for kindness, and it stopped me in my tracks.  Kindness…  In my fury I had forgotten all about kindness and I felt like a balloon that had just been popped. Pfssssst…  All that lovely anger that was protecting me from all those other feelings I have, oozed out.  Pffffffssssst.  And you know what I was left with?  Sadness.  Overwhelming sadness and something else.  Fear.  Tremendous fear.

Sadness and fear do not make me feel powerful.  Instead they make me feel vulnerable.  I don’t like feeling sad and vulnerable.  I want to feel powerful, but all of these things are illusions at best.  Just because I feel powerful does not make it so.  Just because I feel vulnerable does not mean I am.

Someone wrote on a public forum that they were heart-broken over a mother who tried to kill herself and her child.  They followed that thought with this, “she was given a burden she could not bear” and I felt like someone had kicked me in the solar plexus.  You see, I take those words personally.  They may as well have said that they believed that about one of my children.  Please, please, do not say a child, any child is a burden.  Even if you believe this to be true, do not say those words in public.  Do not.  This is what private support groups are for. This is why people see psychiatrists, psychologists, counselors, this is why we call close friends whom we love and trust and who we know will honor what we say in confidence and keep what we say confidential.  In moments of terrible pain all of us can and do say things that upon further reflection we wish we hadn’t.  We think things we do not really believe in moments of upset.  We may even act on these things that we think and say, these are the times we wish we’d said and done nothing.

Not every feeling must be acted upon.  Not every thought needs to be said out loud.  Please, when you say someone’s child is a burden and that it was too great to bear and that this was why they tried to kill that child, it places a stigma on all our children.  This kind of language terrifies me.  I am terrified someone who believes Autistic children are a burden will come into contact with my child and treat her accordingly.  Please if you believe Autistic children are a burden, if you feel their neurology makes them inferior, do not go into the field of autism.  Do not convince yourself that you will be able to help that person, you won’t.  Feeling sorry and pity will not help or make that person’s life better.  In addition, when we believe another person is a “burden” it is being suggested that there are situations when it is acceptable to not be held responsible for what we say and do.  It is being suggested that, to hurt someone we believe is a burden, or worse, take that person’s life, is a reasonable thing to do.  It’s not.  It’s not okay.  We cannot, in our desire for compassion, allow this to ever be okay.   It is not okay.

Finally, if you truly believe someone, whether it is your child, someone else’s child or just in general, is a burden, please talk about these feelings and thoughts with a professional or someone you trust who can help you work through these beliefs with compassion and care.  If you do not know where to turn or do not understand why this kind of thinking is problematic, email me privately so that I can try to better explain or can find someone who will be able to explain this in a way you can hear.  My email is:  emmashopeblog@gmail.com

Dehumanizing

A daughter lies unconscious in a hospital.

Her doctors fear she will have permanent brain damage as the result of carbon monoxide poisoning.

The mother is charged with attempted murder.

We are told the daughter was aggressive.

We are told she was Autistic.

I cannot stop thinking about Issy.  As I write this, she is lying in a hospital bed unconscious.  I cannot stop picturing a photo of her laughing, her blonde hair glimmering in the sunlight, her head thrown back, a look of joy on her face.  

And I am angry.  

We live in a society where news articles with titles like “More U.S. families in the grip of autism” are commonplace.  People equate autism to cancer, refer to autism as a burden, a crisis, and an epidemic.  The Judge Rottenberg Center is allowed to remain open despite their continued use of electric shock as a viable “treatment”.  We live in a society that has allowed schools to put young students in isolation rooms,  “Physical restraints are becoming more prevalent in public schools.”  The word “treatment” is used loosely and covers a great many behavioral plans, some which allow Autistic people to be abused and even killed.  

We have succeeded in dehumanizing a segment of our population.  A segment of our population that includes my daughter.  

Anger doesn’t begin to cover what I’m feeling.  

Related Posts:

Bodies and Behaviors – by Michael Scott Monje Jr. at Shaping Clay

It is Wrong to Murder Your Autistic Child – by Judy Endow at Ollibean

To Issy Stapleton, with love. by K. at Radical Neurodivergence Speaking

Walk in Their Shoes by Paula Durbin Westby Autistic Blog

Blaming the Victim:  An Autism Parent Story – That Autistic that Newtown Forgot

Media Throws “Autism Parents” Under the Bus Again – by Ibby Grace at Tiny Grace Notes (AKA Ask an Autistic)

Peering into the Darkness

Sometimes there is such tremendous darkness, it scares me.  Sometimes my instinct is to go deeper into the darkness.  Sometimes my instincts are not helpful.  Sometimes my instincts lead me the wrong way.  Sometimes…

When I was in my thirties I went down into the darkness, so deep I began to wonder if I would ever find my way out.  There was a moment, a moment when I stood at the edge and contemplated the void.  It felt blissful.  The darkness seemed to hold the answers I sought.  The darkness held the promise of calm and peace and quiet from all the noise and pain.  It beckoned to me and I believed, for a moment, I believed it was the answer.

I would like to report that in a single instant I made the decision to step back from the edge, but it wasn’t like that.  It was hard to move away.  It was difficult and painful and there was nothing elegant or easy about it.  Stepping away was more like an agonizing scramble of falling, tumbling backwards and clawing forward, grabbing on to whatever scrap of hope I could find.  Some days felt like a slow, steady, groveling crawl on my hands and knees just to get through the hours that make up a day.  And on those days I believed this would be my life forever and I wondered how I could continue.  It was on those days, when I believed I knew what the future held, those were the days that were the hardest.

There are tricks I learned, little things I learned to do, some are silly perhaps, but I do them anyway.  When things feel like they are too much, I tell myself I can get through the next hour, just one hour without hurting myself or anyone else.  Just for the next hour, I will not do or say anything that will cause harm.  Just for this next hour.  And when that hour passes, I take the next hour, one hour at a time.  I have done this for many years now and funnily enough, this method of taking one small manageable segment of time and being present for whatever it may bring continues to work.  During those early days when all of this was new to me, I even gave myself permission to do whatever it was that I wanted to do, but knew it would hurt me after the hour had passed.  Then the hour would pass and I would see I had gotten through it and I would say, okay, just one more hour.  I can get through one more hour.  And I did one hour at a time, I did.

I learned to make phone calls or text people I trust and know are safe.  I let them in, I asked for help.  Sometimes help meant listening to another person, sometimes it meant they listened to me.   I learned I had choices, even when it felt that I did not.  People had to remind me to do the thing that everything in my being screamed at me not to do – reach out in kindness to another.  Sometimes even when I could not muster up the strength to be kind to myself I could show kindness to another, so I do at least three anonymous acts of kindness. (Using the present tense now.)  The anonymous part is important.  It’s imperative that my actions are not about getting thanks or being appreciated, but are about actively taking actions where I can be the person, even if only for a few minutes, I would like to one day grow up to be.

I look back on those years, so long ago now and no longer recognize that person who contemplated the darkness.  I do not know her.  She is unfamiliar to me and I’m grateful.  Mine is but one experience, there are countless others.  I have no answers.  All I know is that to keep the life I now enjoy, a life I could not imagine myself ever having, a life that, so many years ago, would have seemed too good to be true, I must do certain things on a daily basis to make sure that tomorrow and the next day will not involve being anywhere near the edge where I am tempted to peer down into that pit of darkness and contemplate its depths.

If you or someone you know is struggling, reach out for help.  Tell someone else, let them help and remember you are not alone.

An Analogy – Communication via Violin

*This is a guest post by a friend of mine who is brilliant and thoughtful and compassionate and patient and, well, all-around fabulous.

*Guest Post by DYMPHNA

This blog post is a brainstorm I had after reading several posts (‘here‘ and ‘here‘) on this blog regarding the idea of communication, particular why spoken language, which seems so natural for some, is more difficult for others.  First, I must own the fact that I have a pretty strong relative privilege in this vein.  Spoken language comes naturally to me, so I am writing all of this with the caveat that I might be totally wrong.  If Autistics who are less inclined to spoken language correct me on anything I write in this blog post, listen to them, not me.  Secondly, this is an analogy and all analogies are imperfect; my hope is that this might provide an accurate framework through which people who grasp spoken language easily might be able to understand the difficulties of those for whom it does not come so easily.  (This process for learning music is way out of order from how people actually learn music.  Please don’t kill me, music educators.)

Okay, so, in this analogy, you are going to take this page of information and realize it into meaningful sound:


[Image description: Picture is the first page of the Chaconne
from Bach’s Violin Partita No. 2 in D Minor, BWV 1004.]

Now, for many of you who haven’t learned anything about musical notation, you are already at a loss.  The picture above is literally meaningless to you.  There are some horizontal lines and there are dot’s connected to vertical lines and there are these weird symbols that look like a lowercase b and a #.  If you haven’t learned to read musical notation, the only things on this page that you even recognize are some arabic numerals that you have no idea how to interpret and this Italian word at the top “Ciaconna”, which the dictionary defines as, “a slow, stately dance of the 18th century or the music for it,” a definition which is not particularly helpful.  With the resources available to you, you have established that this is an Italian dance from the 1700s.  So in order to realize the page I put above you, you need to become fluent in musical notation and have the ear training necessary to understand what the pitches are and how to keep time properly, a process which many people find quite difficult.

So, having learned all you need to know about musical notation, you’re ready to perform the Chaconne, right?  Well, probably not, as you have no idea how to play the violin.  (Violinists, you are playing the piece on the piano.  If you are also a pianist, you’re playing it on the flute.  If you’re also a flautist, you are playing it on the musical saw.  If you also play the musical saw, you need to just accept the premise of this analogy and move on.)  If you are not a violinist, and I imagine that most of you are not, you don’t even know how to set up, hold, or tune the instrument, let alone produce a decent sound and then connect those sounds into a meaningful piece of music.  So now that you understand what the notation means, you need to tackle the actual physical reality of learning how to play the instrument, a skill that takes years to do competently, decades to do proficiently, and half a lifetime to do masterfully.  You need to learn how to hold the instrument and the bow and all sorts of skills about how to make the correct sounds come out of the instrument.  Likewise, before you can do any of that, you have to learn to set up and tune the instrument, skills which are quite challenging to the beginning player.  (As someone who has attempted to play the violin on several occasions, I can attest to this.)  The process usually involves tedious work on many minute elements of technique that are by themselves very difficult, such as using different bow strokes, crossing strings, and pressing the fingerboard in the correct location.  Moreover, you have to keep track of all of these elements of technique while attempting to accurately realize a score of music, so in addition to the difficulty of playing the music, you are simultaneously applying the skills you’ve learned in step one.

Congratulations!  Having done that, you have the skills needed to accurately realize the first page of Bach’s Chaconne, a skill that will land you zero audiences and communicate very little.  What most people don’t realize is that very little information is actually given to the musician by the composer.  Many elements, such as the subtle ebb and flow of time, the varying loudness of any given instant of music, vibrato, etc., the elements that make music expressive and, if you’ll pardon the expression, musical, are not given to the performer by the composer.  If the performer performs the work exactly as written on the page, it will sound mechanical and banal.  This is why proficient musicians spend a great deal of their time focusing on interpretation.  They are trying not only to reproduce the pitches and rhythms indicated on the page, but also subtlety that music needs to be truly compelling and persuasive.

All right, having done all of that, you can now convincingly convey great musical ideas.  Musical ideas written by Johann Sebastian Bach.  While you certainly bring something of yourself to the table, none of these are ideas that you originally had.  The basis for all of these ideas was written almost three centuries ago.  In speaking, this is analogous to someone being able to convincing recite a work by Shakespeare.  A great skill in its own right, but all the while we’ve still fallen short of our actual goal, which is to communicate our own ideas effectively to others.  Right now we are only equipped to communicate other people’s ideas, albeit with our own twist.

I would like to pause here and draw some of the analogies between playing the violin and speaking.  First of all, there is the process of developing a rudimentary understanding of what music is, which corresponds to having a crude and basic understanding of the English language.  I will discuss the full understanding in just a moment.  Next, we have to negotiate the physical reality of playing the instrument.  We might have a fantastic conception of what the Bach Chaconne should sound like, but that means nothing if we lack the ability to realize it on the instrument, which is an inherently physical process.  This, not surprisingly, corresponds to the actual motor process of forming words.  For many of us, those processes seem pretty simple, but imagine what it would be like if they didn’t come naturally to you.  Imagine if everyone seemed to have this innate aptitude for holding the violin and producing pleasant sounds on it while you are struggling to get notes out.  Most people, having able or neurotypical privilege, take this ability for granted, so I want you to imagine a world where, instead of speaking, we communicated by playing the violin, a skill for which many people do not have the natural aptitude.  This is where the Social Model of Disability comes into play.  For those who find speech easy but playing the violin difficult, this world is fine for them while they would be disabled in the violin world.  Likewise, those who find playing the violin easy and speech difficult are disabled in this world but fine in the violin world.

Resuming our violin analogy, there is a lot more to speech than playing the Chaconne by J.S. Bach.  As I stated before, most people seek not to reproduce the ideas of others, but rather to convey their own ideas, which they do in real-time.  In music, this equates to improvising, a skill that isn’t necessarily that difficult provided you don’t seek to convey anything that complex.  However, there are still things to consider.  First, you want to have the semantics of what you are improvising accurately reflect what you are trying to convey.  I cannot think of an accurate analogy for this, so please leave an idea in comments if you have one.  On top of that, you have the elements of music theory, which is essentially the grammar of music.  Certain notes in certain contexts convey specific meanings that might not be conveyed in another context.  Without using this correct syntax, what you are trying to convey will start to sound random and disorganized or possibly just “wrong”.  This process comes very easily to most people, but understanding grammar is no simple task, a fact which anyone who has tried to learn a foreign language can testify.  In our native language, we can just say what “sounds right” without having to put too much thought into it.  In the same way, a native tonal musician might be able to tell you that a C-Sharp and a G need to resolve to D and F intuitively without explaining the theoretical reason behind this in the same way that you know whether to use “me” or “I” in a sentence.  However, just because this process comes to us intuitively doesn’t mean it isn’t going on and it’s something we oughtn’t take for granted when thinking about communication.

So what is the point in all of this?  I’ve drawn all of these parallels about how spoken language is like playing the violin.  The point in all of this is the following:

First, the process that we think of as intuitive and easy is not necessarily that easy or intuitive for others.  I don’t find playing the piano very difficult, but most people would struggle to play something rudimentary on the piano because they are dealing with all of the things I mentioned above.  Moreover, at the piano, you at least have the reassurance that if you press a key, a musically sounding sound will come out, something that isn’t guaranteed on a violin or when speaking (which is why I chose the violin for this analogy).

Second, I want people who find things to be easy and intuitive to think about what it might be like for those who don’t find the process so intuitive.  As many people are not instrumental musicians, I challenge you to think about what challenges you would face in the world if, instead of communicating via mouth sounds in natural language, we communicated by instrumental music.  Hopefully this exercise will expand your empathic process so that you can understand what it means to be disabled without medicalizing us or assuming we have a deficit.

Third, I want everyone to think about some of the strategies you might employ in this alternative violin world where you are struggling with many of the rudimentary elements of communication.  Maybe, since you don’t want to have to deal with the challenge of writing a syntactically correct and semantically accurate statement while dealing with the difficulty of playing the instrument, you might instead use an existing melody that approximates what you want to say instead of attempting to improvise something of your own.  Maybe in this violin world, you’ll get special education for doing this, seeing that you have musical echolalia and your ability to use spoken natural language, a skill that frustrates you as you want to use it to express yourself while no one uses that skill, is seen as a “splinter skill”, not inherently useful, but rather a means to develop your violin skills, which are the “correct” way to communicate.

I think this exercise in empathy is much more effective than the wholly appropriative and mocking “Be Disabled for an Hour” idea that many people try out.  Of course, you need to recognize that this will not give you a perfect view into our world.  Being that you don’t live in this culture in which you are disabled, there are things that might not occur to you that are realities that disabled folks have to deal with every day.  Thus is the nature of privilege.  But I hope this has expanded your notion about how disabilities impact your life and how society defines what is and is not a disability.

Sensing Another

Last week I wrote a post, Speaking vs Typing, which sparked a terrific discussion about language, communication and how we interpret what others say and do.  My friend Barb, who wrote (with Lois Prislovsky) the not-to-be-missed book, I might be you commented:

“my dear neurotypical friends, first, let me say i love that you all are putting your heads together to break down this truth into practical ideas to help me and my autistic peers who struggle mightily with spoken language communications. em is right, “language is an awkward way to communicate” and i argue that is true for everyone but highly challenging for those of us who are autistically wired in the “vanilla cake” or “mail truck” way that em and i are. it took me years to think in language. but prior to that my thinking was not faulty it was just not language based. thinking in language is not efficient for me. i wish i could give you a pretty little fact package about what works so folk like me could get such treatment and soar socially and academically. of course, the problem is…it is hard to say in language. typing makes it way easier, because i can control the speed of each thought and break it down to smaller parts to be better described by letters one peck at a time. speaking requires a rather unnatural process for me perhaps like you singing a song you heard in another language. u may be able to imitate the sounds but the meaning in each mimic is not precise. since most folk are not yet well practiced in telepathy the best way for me now is to communicate through typing. but still my thinking is not easily translated in to words. feelings, sensations, visions and perceptions that are cleanly processed in my mind dont fit well into letter symbols. there i said it – or something close. thanks for caring. trying b”

Barb’s comment made me wonder whether my daughter is able to “hear” my thoughts, even if just a little.  And that if she were able to, it would make sense that either typing or speaking would feel like an inferior, less efficient form of communication, perhaps it would be viewed as somewhat barbaric, and certainly a less sophisticated way of communicating.  So I asked her, “Can you hear my thoughts?”  To which she answered, “No.”  Not undone, I asked, “Do you feel them?”  To which she did not reply.  This post is not about mental telepathy, but is more about how we sense each other.  Some of our senses we are taught to fine-tune and others society either doesn’t recognize or doesn’t place as much importance on.

But what if we lived in a culture that did encourage sensing another’s presence and feelings?  What if, from the time we were born, our sense of other people’s state of mind, their feelings, was nurtured.  Would that change how we communicated with each other?  What if spoken language took a back seat to our intuition?  What if we lived in a society that placed more importance on our presence, than on our words?

All of this reminded me of a conversation I had with a couple of friends, both of whom are Autistic, about disability and society’s role.  I wrote a post about that, ‘here‘.  One friend said that if we lived in a world where everyone used a variety of alternate forms of communication, where a longer time period was allowed and expected between words, and supports were anticipated and provided, then people who do not speak would not be considered disabled, just as I am not considered disabled because I cannot juggle or jump as high as an Olympic high jumper.

If children were taught at an early age to sense each other without relying on language, would we evolve into a species where language was viewed as unreliable and untrustworthy?  Does my daughter view language as a lesser form of communication?  Is she not as motivated to communicate, either through typing or verbally because her other senses are more finely tuned?  Does motivation even enter into all of this?  My brain is constantly looking for intent, motivation, but what if this isn’t what’s going on at all?  What if this has nothing to do with any of that?  What if she is trying so hard to communicate by typing and speaking because she understands I want her to, but not because she has the same need that I have?  Does music call to her because it is less about the lyrics and more about the beauty of the music, the feelings the music evokes?

Is all of this way too esoteric and ethereal?  EmTypes ICI

 

Memories Evoked

I enter the subway car.  To my delight there is an empty seat near the door.  I sit, rummage through my bag for my book and begin reading from where I left off, but the words are blurry and I cannot concentrate.  I am aware of a powerful odor emanating from the person seated next to me.  I close my eyes and try to concentrate on breathing through my mouth.  My stomach clenches and my eyes begin to water.

I’m five years old.  Mrs. Williams is rustling about in the other room.  The pain in my chest is as much from the ache I feel because my parents have left on their yearly trip as it is from my fear of the woman who has been hired to take care of us for the next few weeks.  Mrs. Williams with her coiffed hair and antiseptic smell, everything about her is no nonsense, business like, a kind of grim resignation that oozes from her every pore.  When angry she uses her hand, like a paddle, it comes down swift and seemingly without emotion, as though the pain I feel upon contact has nothing to do with anything: arbitrary, remote, senseless.

I hate Mrs. Williams and my anxiety and sadness that my parents have left us, even for only a few weeks adds to my hatred of her.  She crinkles and rustles when she moves, her skin hangs from her body like an ill-fitted suit, she smells of soap and perfume that make me nauseous.  She is stocky and seems well rooted to the ground, her movements are steady and purposeful.  She rides out the time my parents are gone like a convict doing time.  I can find nothing pleasant about her.  Just thinking about her fills me with fear.   Her dislike for me and my sister is all the more apparent when my brothers are around as she obviously dotes on them and shuns us.  If ever there is a dispute, it is my fault, no matter that I am the youngest with siblings a full eight and six years older than me.   

We are told she had a son sent to Vietnam who never returned.  We are told it is because of this son that she adores my brothers.  I take this information in stride.  It is fact.  I am representative of something unwanted, something I do not and cannot understand.  She is particularly concerned about my bowel movements.  She takes note of them, even going so far as to stand guard outside the bathroom listening for sounds of success.  As I sit on the toilet I imagine her ear pressed to the door.  Why this is important is something I can’t figure out, but that it is, is evident by the reports she feels compelled to give my older siblings.  Now my brothers and sister are on high alert.  My bodily functions are examined, discussed, they have become a topic.  The more I am closely observed the more  anxious and fearful I become.   

I grip my book tightly and try hard to breathe out of my mouth. I glance over at the woman next to me.  Her eyes are closed and I realize she is asleep.  As the train careens through the darkness, her body sways with its motion.  The train turns.  She leans into me, the smell of soap, antiseptic, and some other odor I cannot identify, but that reminds me of those weeks once a year when my parents left us in the hands of someone who should not have been caring for small children, is over powering.  She is unaware of me or the memories her presence has evoked.

I think of my children.  I see the look of anxiety on my daughter’s face when she says, “No, not going to Katie’s class.  That is the old school.  Emma goes to new school.  Emma goes to new school with Mommy.”  And all I can hope for is that her new school will not be staffed by anyone whose presence gives her cause to remember them decades later with anxiety and a feeling of plummeting through an endless darkness.

Visiting the new school

New School

Presuming Competence & Expectations

Presuming competence is not code for – my kid is a genius and capable of super human abilities.  (Though some may be, it’s not a given.)  One of the things I continue to struggle with is the idea of presuming competence.  Often I don’t go far enough and other times I go too far without meaning to.  I have made assumptions about my daughter’s ability or inability that are incorrect, or at least have been incorrect in that moment.  Whether I expect her to be able to do something that she cannot, or at least cannot do today, but may well be able to do at some point in the future or whether I do not expect her to do something that, it turns out, she is more than capable of, I am treating her as though I know one way or the other.  But the truth is, I don’t know and neither do a great many of the people who come into contact with her.

The best thing I know to do is to remain in the moment with an open mind.  Easy, right?  Yet I don’t think it’s easy at all.  I find staying present very, very difficult, which is why in Buddhism they call it a “practice”.   It takes practice to stay in the present.  It takes practice to remain solidly rooted in this moment without drifting off into some future scenario of what might happen, what should happen, what I want to have happen, what I fear will happen and then all the things I do to control all of that so everything I want will occur the way I want it to, in the time frame I want.  I’m exhausted just writing about this!

My daughter continues to astonish and amaze, just as my son does.  As both my children mature and come into their own, they do and say things on a daily basis that I find utterly delightful and incredible.  But that delight is tempered by expectations.  I know this, yet find it extremely difficult to keep my expectations in check.  My expectations often cause disappointment. I don’t like feeling disappointed, so I try to turn the volume down on my expectations, but if I keep my expectations in check then am I still presuming competence?  I can go around and around with all of this endlessly.  The only conclusion I have come to is that I’m not going to always get it right, but I’m going to do my best to stay aware, stay present and open to whatever happens without preconceived ideas of what should or shouldn’t happen and while I’m doing all of that, I’m going to remember to breathe.

Breathing is good.

 

A wild mushroom growing out of the side of a makeshift bridge – Colorado August, 2013Mushroom

 

Speaking vs Typing

At an Autism Conference last month someone asked my daughter “Have you ever been to Australia?”  Em immediately answered “Yes!”  Yet when this person held up a laminated card with two boxes, one red with the word NO and the other box green with the word YES and asked the same question, Em promptly pointed to the red box with the word “NO”.  When asked what she had for breakfast that morning, she answered, “Vanilla cake!” but when asked the same question and asked to respond by typing she wrote, “I ate cereal, toast and yogurt.”

Many people ask me why we are spending so much time and energy learning to support Emma’s typing.  The most common two questions I’m asked regarding this are – why do you need to support her at all when she can use her two index fingers to type independently  (I will write a separate post on that question) and why do you encourage her to type when she does and can speak?

Ironically I have yet to find accurate words to describe my daughter’s speech.  I’ve said things like, “Her speech is unreliable” or “She can use language, but it often does not reflect what she really means to say” or “When she types we get a more accurate idea of what she intends to say, wants, or is thinking.”  But I’m never sure people understand what I mean or if they do understand, whether it helps them when they try to talk to someone like Emma.  (I have since met a great many people who have some language, but it is “unreliable” in that they will say things that are not necessarily the answer they mean or the words they meant to say.)  Inaccurate speech is not because the person means to evade or is willfully not telling the truth, but is indicative of specific brain function.  Lots of speech therapy, concentrating on spoken language, did not help Emma.

By the way verbal scripts serve as a default and come into play often in context to what is going on, but sometimes they are triggered by a detail.  The script can appear to have nothing to do with the topic being discussed.  For example we had an electrical storm the other night which reminds Emma of the fireworks on both New Year’s Eve and the Fourth of July.  Emma calls both firework displays and electrical storms, “thunder fireworks.”  She also calls rain storms and electrical storms, “firework bubbles” or “motorcycle bubbles”.  But if you didn’t know any of this and were with her when it began to rain, you probably would not understand the association when she said, “Ohhh, look!  It’s motorcycle bubbles!” and then pointed cheerfully out the window.

If I ask, “Em do you want to make vanilla cake?” Em will ecstatically respond, “Yes!”  She happens to love nothing more than vanilla cake with vanilla frosting.  I know this, no further questions are needed.  However, if I ask her, “Em what did you eat for dinner last night?” She might respond with, “Vanilla cake!” or she might respond with what she actually ate.  If I ask her why she was crying on the school bus, she might say, “You cannot scream!  You cannot scream and bite on the bus.  If you bite, no hitting!”  or some other equally cryptic answer that does not answer the question of why, though it does give me a good idea of what was said to her and that she became so upset she began to bite herself.

However if I ask her to type her answer, she might type, “A boy was scratching my seat.  I asked him to stop, but he kept scratching.  He made me mad.  The matron said, no kicking.  Emma’s sad, Emma bit her arm. I don’t like that boy.”  If pressed further, she will type his name and I will be able to tell the bus matron that Emma should not be seated near the boy whose name is X.  Problem solved.  The point is, when typing, Emma will write things she does not say. But to people who are unfamiliar with someone like this, they find it confusing.

When I showed Emma this photograph just now and asked, “what do you see?”  She answered, “Good!”  We went horseback riding while visiting my sister last week.  And it was.  It was “good!”

Horseback riding

People: Interpreting and Responding

Two days ago Emma told me I could write about people’s reactions to her, though it is more accurate to say this post is about my reactions to what I perceive to be people’s reactions.   I asked Em if I could write about that too and she gave me her permission.  My feelings are not necessarily the same as my daughter’s.  I may perceive someone’s curiosity and even confusion as annoyance or impatience or even outright anger, while Emma remains in the moment, without judgment or adding layers of interpretation to people’s responses to her.  Someone who makes a comment or tries to engage her in conversation, a person she then walks away from or answers with, “Emmaemmaemma!” I may decide is judging her harshly or is drawing conclusions about her that they may not be.  Sometimes I decide my daughter is saddened by the reactions she gets from others, yet when asked, she tells me she liked that person and felt happy meeting them.

So it was, a  few nights ago when a dozen or so people came over for dinner.  I knew only one of them, the rest being complete strangers.  Typically at any gathering, either here or at our home in New York City, we know almost everyone who enters our home.   And they, in turn, have met, or at least know we have two children.  Whatever happens is usually met with smiles and kindness.  People might ask questions, some will actively seek to engage, others do not attempt to, but all are friendly and take whatever happens in stride.  We have wonderful friends, and those who are not kind, are not our friends…  but this group was made up of people I’d never met and so when Emma said she wanted to sit at the dinner table with them, I felt a certain degree of trepidation.

I imagined they were confused by her and it felt awful.  I stood nearby, ready to interpret, ready to intervene, ready to take over, ready to control the situation.  But my daughter does not need me to take over, she’s perfectly capable of interacting with people without my intervention.  At one point she thrust her hand out blocking one woman’s view of her, so that the woman could not see Emma, or more accurately, Emma could not see her and the woman immediately made it into a game of peering over and under Emma’s hand.  Emma smiled and began to laugh.  “Don’t look at me!” she said in delight.  The woman stopped and made a big point of looking away.  Emma giggled.

I went into the kitchen briefly and when I returned, one woman I imagined, looked worried.  Another guest I thought seemed annoyed or maybe nervous.  I am sensitive.  I know this about myself.  I think I can “feel” people’s energy, and often I can, but sometimes I decide I know what others are thinking and feeling and I’m wrong.  I have always been hyper aware of people’s vibes, sensing their emotional state, which has caused me problems when I’ve been wrong, as well as kept me safe, when I’ve been correct.

After everyone left, Emma said to me, “Have another dinner party tomorrow?”

“Did you have a good time, Em?”  I asked.

“Yeah!”

“How did you feel when that woman was looking at you and you held your hand out blocking her view of you?”  I asked.

“Playing don’t look at me game!”  Emma answered, laughing.

“Was that fun?” I said, wanting to make sure she was okay with the interaction that had taken place.

“Yeah!  Another dinner party tomorrow!!”

After Emma went to sleep, I lay awake, feeling troubled.  Emma’s experience of people is not the same as mine.  I am fearful of people, or I tend to be.  My daughter does not share my fears.  I sense people’s intent and often believe what I’m sensing, as though it were fact.  I hear and sense people’s words, often read between the lines, take their words, add my interpretation of them from the way they hold themselves, the tone they use, the way they look and draw conclusions from all these factors.  My daughter does not do what I do.  I’m not sure how she interprets others, but I do know it is different from the way I do.  Both my children interpret the world differently from me.  This is a good thing.

Neither of them are as fearful as I am.  Neither of them shrink in fear when someone is angry as I do.  Neither of them physically pull away when someone raises their voice as I do.  I have a physical response to what I perceive people are thinking and feeling.  I feel slightly nauseous when I think someone is angry, even if they are not, or if they’re angry, but not about anything to do with me, I still feel uneasy.  If someone seems particularly upset, my hands will shake, it’s hard for me to speak.  If I become angry, my face will turn red, my whole body feels hot and I will begin to shake.  If very upset I cannot form coherent sentences.  Sometimes, whether angry or hurt, I feel pain in my chest and it becomes hard to swallow, my breathing becomes shallow and it feels as though there is less oxygen in the room.  All of these things are ways of adapting, I understand this, but I also am relieved when I see both my children not interpreting people and therefore not responding to a perception of people’s emotions as I do.

Performing for guestsPerforming

Routines Disrupted

We have been traveling.  Our cell phone and internet coverage has been spotty and in some places we’ve had none at all.  As a result my routine, which usually means I wake up when Emma comes into our room, (anywhere from 5:15AM – 6:00AM) get dressed and go to my studio where I begin the day by writing, has been disrupted.  The beautiful thing about traveling is that there is no room for routines.  We’ve spent a few days with my sister, gone on a rafting trip down the Colorado River, gone horseback riding, gotten lost, spent time with one of my brothers, hung out with one of my cousins, (I have a large and sprawling family that live all over the United States and even world, and my mother’s house is often the only place we get to see one another.)  So it’s been really wonderful and lots of fun.

When I have gotten up early enough to write AND the internet is cooperating, I have begun a post only to have Em say she doesn’t want me to write about the topic I began writing about.  In fact, I have started three different posts, and Em has shot down every single one of them.  This could be seen as a bad thing, but I don’t view it that way.  I see this as an incredibly good, no, a great thing.  The first time I told her what I was starting to write about and asked her permission, she said no, I was surprised.  The second time I began writing about something else and asked her permission, I was surprised and amused when she typed “no, I do not want you to write that.”  The third time I thought – this is great!  Great because this blog began with no thought of her opinion and has evolved to represent only what she agrees to and may well end because of her thoughts and opinions.

What all of this means is that I haven’t been writing every morning.

So I will end with something Em typed to me the other day and told me I could post.  She typed, “Language is an awkward way to communicate.”  She would not elaborate further and why would she, as that sentence says it all.

The Rocky Mountains

View From Cabin

The Quest

The quest for various potions and remedies kept the mother  separate from her child, though she did not know this at the time.  The mother believed it a valiant quest, and prided herself in her vigilance and determination.  She would single-handedly conquer what had thus far proven unconquerable to vast numbers of scientists, neurologists, neuropharmacologists, researchers and all those who had devoted their lives to finding a cure for autism.  She would save her daughter and she would prevail.  Call it arrogance, a lack of humility or simply being unable to understand; she would reflect on her own near miss with death as justification for her belief in her ability to do what no one else to date had.  (And yes, she began to forget that her sobriety and abstinence were not due to will power or because she tried harder, but was because of the help she received from a larger group/ a power greater than herself.)  All thoughts of something being more powerful than herself were temporarily forgotten, or put on hold, or, depending on the day, justified as being part of what she was trying to do.  As I said before, she was veering from the path laid out for her by thousands of addicts who had years of sobriety and abstinence and practiced humility, honesty, openness, willingness and acceptance as the basic tenets of their ability to stay clean one day at a time.

“Courage to change the things I can…”  she would often repeat this to herself during particularly tough times, neither saying the first part, “Grant me the serenity to accept the things I cannot change,” nor the last, “and wisdom to know the difference.”  She believed herself to be courageous.  She knew herself to be courageous.  And she had learned over the years how to tap into her innate kindness, to foster it, encourage it and nurture it, though in her quest for a cure she felt increasingly out of touch with all that and began to struggle mightily with what it meant to take “the next right action”  or know what it meant to know any will other than her own.

Whether there is a G-O-D piece to all this is not something I can speak of, nor can she, as this is a word that never brought solace, so in the midst of all of this she abandoned even saying the word and stopped trying to make sense of what it may or may not mean.  She did, however, believe in something larger than herself, a power whose meaning shifted over the years and eventually evolved to mean – kindness, love, appreciation, gratitude – these were the things she knew to do and act upon when feelings began to feel factual, when feelings served to confuse her and make her believe them, despite what was happening and what she was witnessing.  Acts of kindness were the mainstay of her “practice” for no other reason than she knew her life was better when practicing kindness than when she did not.

So it was not a leap for her to believe that finding a cure for all that ailed her daughter was an act of kindness.   It’s important that I interject here that to this girl who had grown into a woman, had spent more than two decades of her life being an addict, found abstinence and sobriety through another way of being in this world, became a mother to two beautiful children, a “cure” meant removing all those things that caused her daughter pain.  A cure meant that her daughter would be able to carry on a conversation, the way non-autistic children do, that she would not have GI issues, she would not have sensitivities to texture and noise and pain, but that she would be relieved of all of that.  She told herself these were all things her daughter would want to have removed and be “cured” of if only she could tell her.  The mother believed this wholeheartedly and comforted herself that she was doing the right thing.  The only thing.  The best thing.  Not for a moment did she think of a “cure” as an eradication of her child, but more a version of her child.  A kind of fantasy, similar to believing in Santa Claus, of who her child would be if she were relieved of all or most of her physical pain and had the ability to get along in society and this world with ease.

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

There Once Was A Girl (Cont’d)

The first part is ‘here‘.

This woman, who was once a girl, learned a great many things once she stopped trying not to feel.  This was a huge surprise to her as she believed she already knew a great deal.  She learned that people terrified her for they were capable of doing tremendous harm and she came to realize she had spent many years avoiding all people as a result.  Most of her pain in her adult life came from the expectations she held and not from the actual people or things they did or didn’t do.  She learned that no one person could ever be all she wanted and hoped for, but that a group of people could.  She learned that a community with a shared goal was more important than individual grievances and that her ego often pushed her from the path she’d chosen.

She met a wonderfully, flawed human and together they had two beautiful children.  With each child her world expanded and grew.  She often reflected on all she’d learned during those terrible years of her earlier life and tried her best to apply what she was learning to her new life as a parent.  But her youngest child, a strong, independent, baby girl who held an uncanny resemblance to her mother had a dreadful time tolerating certain feelings, sensations and the world.  She could not communicate through words and her mother watched her in helpless despair as she saw herself, her early self, her former self reflected in her child’s upset and frustration.  The mother would do anything to take that pain away so her daughter would not have to go through what her mother once had.  The mother would walk to the ends of this earth if it meant she could alleviate even some of her daughter’s massive physical and emotional discomfort.

And so, without even realizing it, the mother veered off the path laid out for her by so many others.  She did not begin using substances again, but slowly over time, she found herself moving away from one of the key tenets of her new life –  she began to believe she had power over another human being’s neurology and that she knew what was best for another.  Instead of helping her child, she began to fight against her child.  She did not think of it in this way at the time.  She thought she was fighting FOR her child and for many years this is what she told herself and others who asked.  She was fighting for her child and it was a noble fight, she would go to her grave fighting, and, by the way, in fighting she avoided a great many feelings.  She did not know this at the time, but in fact this is what happened.  And while she was busy fighting and desperately trying to keep all those messy feelings at bay, her child was hurting and feeling increasingly separate from her mother, (we cannot know this for a fact, but in retrospect the mother sensed this to be true).

More to follow…