Tag Archives: progress

“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

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Posted in Autism, emotions, Parenting

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How We Got Here

Posted on January 8, 2014 by | 48 comments

I was asked recently to talk about the process that led to my daughter being able to write the insightful posts she’s been writing of late.  And while I initially thought I HAD written about all of this and so much more throughout this blog, upon further reflection I realized I have not written about the process in a condensed form, so will attempt to do so now.  (Wish me luck.)  For those of you who are interested in a more detailed, chronological version of what we’ve been doing that has led to Emma writing posts like ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this‘, ‘this’ and ‘this‘ for this blog (and to see the daily progress) you can enter terms such as, RPM, Halo, Soma, communication and non-speaking in the “search” box or just begin reading the posts starting in mid-September until now.   For those of you who are REALLY curious, you can go back to October, 2012 when I went to the Autcom Conference.

There’s no way to say that on such and such date everything changed.  Like so much in life it was the incremental, seemingly, not-so-important things that occurred one after the other that then allowed for the next thing and the next until there was that moment we remembered and now look back upon and say, “oh yes, that was when everything shifted.”  Our version of having a – Helen Keller moment –  the day when W-A-T-E-R suddenly made sense, didn’t happen.  At least not like that.  There wasn’t any ONE moment when it all changed, but more a series of moments one after the other that led to a number of “OH!” moments.

One of those “OH!” moments was when Emma went to see Soma Mukhopadhyay (I wrote about that session ‘here‘) and we sat with tears streaming down our cheeks because Emma knew how to spell October and that it was a month in Autumn.  Another moment, previous to that, was when Emma was working with Pascal (documented ‘here‘) over a year ago.  Pascal “asked Em what she would do if she went into her own bedroom and found baby bear in her bed, Em typed, “I would be scared and I would watch his mother.”

I read that sentence several times.  How can I describe the feelings that came with reading it?  How can I express the surge of hope I felt?  How can I possibly describe the feeling of euphoria?  This sentence, this idea was beyond what I have come to expect.  It suggested a whole other level of thinking, a thought process far beyond anything she has been able to express before.”

In retrospect it seems incredible that all of this came as such a shock to us, but it did.  As I’ve said before, we knew nothing.  Literally.  Nothing.  But we thought we knew a great deal.  We knew what we’d been told up until that point and then it seemed as though over night, we realized everything we thought we knew was wrong.  So it was little moments just like these, over and over and over again, that continued to happen leading up to the first time I took Emma to see Soma in Texas (described in more detail ‘here‘, ‘here‘, ‘here‘ and ‘here‘) last September and then returning home and not being able to replicate what Soma was doing. But I was so determined and had to fight how depressed I felt because Emma seemed unable to write words that I’d just seen her write with Soma and yet with me, nothing.  Nothing at all.  There was self-doubt and fear, just tremendous fear that I wouldn’t be able to learn how to do this.  Fear that I would never be able to communicate with my daughter in the way I witnessed her communicating with others like Soma and Rosie and Pascal and Harvey and Leah.

So I had to begin at the beginning with simple choices and felt so impatient and so worried that this was how it was going to be for the rest of our lives.  But I kept showing up each day and making us do our “study room” together setting a timer for ten minutes and then 15 and then 20 and eventually up to 45 minutes and making lesson plans and wondering, wondering, always wondering whether she would be able to get to the point where she could trust me and write with me as I saw her writing with Soma.

I found a woman in NYC whom Soma had trained and we began taking Emma to see her too and I studied the videos of Soma working with Emma and I made notes and spent hours and hours pouring over them and making lesson plans and practicing.  I wrote out scripts of exactly what I would say during our “study room” session, leaving nothing to chance and I kept at it. Finally, after what seemed like an eternity, but actually it was more like six weeks, I arranged to have a Skype call with Soma, having sent her a video of me working with Emma.  Soma advised me to ask her one open ended question at the end of each lesson, which I hadn’t dared do as the one session I had, it was a disaster and she wouldn’t answer me.  I said as much to Soma.  I told her I didn’t think we were ready for that and Soma said, oh yes, but she’s ready.  You must ask something simple at the end of each lesson. So I did.  I did because Soma was so matter-of-fact and sure that this was what needed to happen next.

Emma began answering these open ended questions, at first with a few words and then with longer, more complex sentences.  I began to ask clarifying questions and now…  now look at her go!  It makes me cry thinking about this actually.  I couldn’t have known it would all happen as quickly as it did.  At the time, the process seemed to take forever, but looking back one’s perspective is different and I see it as very fast and I’m just so grateful for all that work, for all those days I struggled and cried to my husband and didn’t believe it would ever be any other way…

By the way, I DO think those Helen Keller moments that Hollywood then immortalizes, has all of us very impatient and thinking life is like that. Of course you and I know, life isn’t so simple or easy, nothing ever is. There’s work, hard, hard work and hours upon hours of showing up over and over again, and then slowly change occurs and it seems incredible, even miraculous!  But no one sees all that work, all those days when things didn’t go well, all those days when tempers flared, when there were tears and frustration and doubt and even disbelief that it would ever be different… until it is.

To all of you reading this – this has been my experience, as a parent, as someone who has always been terribly impatient, but determined.  Emma’s experience has been different (I’m hoping she’ll want to write about that at some point.) Everyone’s experience will differ, but perhaps, just perhaps, my experience will be useful to those of you just beginning, or will bring a smile of recognition to those of you ahead of me, either way, none of us need do this alone.  I didn’t and I am so grateful to all of you who have helped me help my daughter get to where she is now.

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

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The Snowball Effect

Posted on July 26, 2013 by | 20 comments

The snowball effect began with, what I now think of as, a leap of faith.  Richard and I leapt into that great abyss better known as the unknown.  It turns out this was actually not true, it would be more accurate to say we chose to neither believe nor disbelieve, but instead began to examine all we were being told.  Perhaps it’s better to say that instead of leaping into we jumped out of.  From there it was more of a hop to begin presuming competence.  However, as a commenter on this blog said, “presuming competence isn’t enough.” And knowing what we now know, I have to agree.  It’s the starting point.  It’s like that initial leaping off point, it’s just the beginning.

At the moment we are experiencing something akin to being in free fall.  It’s the feeling of discovery, limitlessness, surprise, and pure ecstasy that comes with being present without expectation or preconceived ideas about what should or will happen.  Our perspective continues to change as we move along.  Like any great adventure, the path is at times rocky, but the triumphs are exquisite.  As we move deeper into this process it becomes easier and more familiar to be solidly in the discomfort of the unknown.  There is bliss in that.  True bliss.

Last fall I wrote a post about how I was worried Emma was not comprehending a story that had been sent home in her back pack from school.  It was a simple story, perhaps 1st grade level reading with some questions that she seemed unable to answer.  In the post I write how I am trying to find ways to help her reading comprehension.  I talk about presuming competence.  What I am struck by now is not Emma’s level of supposed incomprehension, but by my own.  I reread all the comments just now and am amazed, amazed that though I thought I was presuming competence, I was only able to go so far with my presumptions and, as it turns out, wasn’t going far enough.  I could only presume as much as my limited thinking would allow me.  The idea that she was not only comprehending this story, but was so far beyond it, was not something I was capable of fully understanding, let alone considering.  I was much more stuck, as it turns out, than my daughter was.

Now jump forward to yesterday afternoon, almost nine months after I wrote the post I refer to in the above paragraph.  Emma chose to talk about adjectives.  We watched the BrainPop movie about adjectives and then she took the quiz.  I copied what Rosie had done, asked her to read the questions silently to herself while using a laminated card to direct her visually and then quickly guided her to read each of the four multiple choice answers.  She only hesitated once, on a question about a possessive adjective, but otherwise breezed through the quiz with 90% accuracy.  Not only was Emma reading faster than I was able to, but she was accurately answering the questions faster than I could read them, let alone answer them.

The snowball effect:  “The basic workings of a literal snowball effect can be illustrated by taking one’s average baseball-sized snowball and dropping it down the side of a snowy hill. As it descends it gathers more snow and whatever leaves, sticks, etc. are in its way. The snowball accumulates not only size, but speed.” ~ From the Urban Dictionary

Self Portrait

photo

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Progress

Posted on July 9, 2013 by | 22 comments

It’s a little ironic that this blog began as a document of my daughter’s “progress” (which, at the time I defined as – becoming indistinguishable from her non autistic peers) and has evolved into a document of my progress and movement away from exactly that kind of thinking.  I don’t really have a problem admitting the mistakes I’ve made, which is probably a very good thing as I am not going to get to a point where I never make any.  But I do my best to learn from them.  I try hard not to beat myself up.  Sometimes I’m more successful at that than other times, but that too is a lesson I learn from.  I didn’t get to any of this on my own.  The progress I’ve made regarding autism, how I think about my daughter and because of that thinking, how I interact with her, is a result of the help I’ve been given.  Help given to me by those who are Autistic.

I would be dishonest if I didn’t admit to times I’ve felt confused, afraid, unsure of myself, and incredibly vulnerable more often than I’d like, but that’s progress too.  There was a time in my twenties and early thirties when I did pretty much anything not to admit I ever needed help, let alone asked for it.  Thankfully I’ve progressed.  So last night when Richard told me about running into one of Emma’s early intervention therapists and how it seemed she was surprised that Emma was not able to carry on a conversation with her, I felt a wave of something I couldn’t immediately identify.  First I cycled through thoughts of “I don’t want to hear your feelings on this,” to “I wish you hadn’t told me about this” to the overwhelming urge to stick my fingers in my ears and yell, “LALALALALALALALA I CAN’T HEAR YOU LALALALALALALALA!!!”

Yeah.  I know.  That would have been childish of me.  And by the way, I’m 52 years old.  You have no idea how much I wanted to do that.  *Shrugs, then smiles. 

Progress…

So after all that, after we got into a fight about something unrelated that I can no longer even remember what the topic was, I realized what I was feeling.  I felt the weight and force of my feelings.  Feelings I really prefer not to have or feel.  Ever.  Shame.  Feelings of shame.  Yup.  Shame.  Like a massive metal door closing in on me, I felt shame.  And then I felt shame for feeling shame.  Fade to black.

Because that’s how this works right?  We feel something and then instead of being able to sit with the feeling, work through it, we add to it by feeling shame for feeling the initial feeling of shame.  Who came up with this stuff?  If it wasn’t so damn painful it would be beautiful in its perfection!  As a friend of mine and I like to say, it’s a “pick your poison” situation.  Whichever way you go, it’s going to hurt.  So yeah, I chose to feel the initial shame and tried hard to be aware of my judgment and that really loud, obnoxious, critical voice that loves to shout at me given the slightest opportunity.  “Shame.  Feeling shame.  Lots of shame,” I said.  Meanwhile Richard had moved on to the New York Times Crossword puzzle and looked at me with confusion.

To be clear – This isn’t about my kid.  This has nothing to do with her, who she is, her neurology, what she did or didn’t say.  This has nothing to do with Richard running into one of her Early Intervention therapists or perceived expectations, either mine, his or the therapist’s.  This isn’t about autism.  This isn’t even about parenting.  This is about perfectionism.  This is about my shame for being an imperfect human being.  That’s what this is about.

Progress…

Reflection

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Autism “Experts”

Posted on July 5, 2013 by | 57 comments

Yesterday Emma asked Richard a question.  It was a question she’d never asked before.  It was a question that made us both inwardly gasp and later discuss at length.  It was one of those things that was noteworthy and made us both rejoice.  It was an example of progress, not just Emma’s, but as I’ll explain, our’s too.  Emma’s reaction to Richard crying out when our impish kitty, Merlin leapt onto his back, was what one might expect, except it wasn’t.  As all four paws, claws extended made contact with Richard’s flesh, Richard howled out in considerable pain.  Emma ran into our bedroom and asked, “What happened Daddy?”

Had we been in the midst of some “therapy” or “treatment” protocol, as we almost always were a few years back, we would have attributed this new, never-before-heard question to that therapy or treatment.  We would have felt a wave of euphoria, believing, even if only briefly, that this new treatment or therapy could be credited for her voicing such a question.  We would have remarked to each other that this was proof and only later, perhaps the following day or day after that, we might have questioned our conclusions.  We might have discussed any other significant thing that might have occurred or we might have waited with guarded excitement for the “next” wonderful thing that would prove to us, once and for all, without a doubt that this thing we were doing was making a difference.  As though our daughter would otherwise stagnate without our constant tinkering.  As though she would not make any “progress” without our various interventions.  As though autism meant complete stagnation and no movement of any kind.

Since we no longer adhere to this line of thinking, we simply spoke of what we’d just witnessed with joy, while shaking our heads at how fabulous it was that we are making progress along side our wonderful daughter.  And as we mutually applauded ourselves for the headway we’ve made, we attributed all of it, her question and our reaction, to what it was – life, maturity, learning, growth and the fact that we humans have a tendency to change and progress and how wonderful is that?!

No one told us this seemingly obvious fact when Em was first diagnosed.  No one told us this, probably because no one thought it necessary to.  Except that in my case anyway, it was necessary.  It was more than necessary.  It was required.  Because with all the misinformation we received upon Emma’s diagnosis, one of the implications was that massive amounts of intervention, forced interaction and jumping through a million hoops was more than necessary, it was required if we wanted to see any “progress.”  It was suggested that if we didn’t do all these things, we might as well resign ourselves to the idea that our child would never move beyond where she currently was.

“I can’t stress strongly enough the importance of diving into action immediately. Every expert in the field agrees that early intervention is essential and critical. The “wait and see” approach is detrimental to your child.” ~  Lynn Koegel and Claire LaZebnik

It should be noted, “Every expert” who is NOT Autistic, may believe this, though I’d argue with the word “every.”  It wasn’t until I began reading blogs written by Autistic people and talking with my Autistic friends, that I started to seriously question this idea.  I also began questioning the whole idea of what “progress” really meant, but that will have to be tackled in another post.  It wasn’t until I began questioning the idea, that I then began also questioning who exactly were these people calling themselves “experts” and how none of them were Autistic, nor did they seem particularly interested in hearing what Autistic people were saying.  Do any of you find it curious that so many of these so-called “experts” do not seem to personally know any Autistic people outside of a clinical setting?  The very people they say they are experts on?  Don’t you find that odd?

Can you imagine if a number of men claimed to be “experts” of women and what it is to be female, but none actually knew any women outside of their professional setting?  Can you imagine that when women spoke up or suggested these views were in direct contrast to what they, as women, lived on a daily basis, these male “experts” ignored them or suggested they couldn’t possibly know what they were talking about because women couldn’t be relied upon to make sense of such things?  Perhaps even suggesting that women tended toward hysteria and being overly emotional? Can you imagine laws being enacted that directly affected women’s lives and their bodies, with a complete disregard for how women felt about such laws?  Any of this sound vaguely familiar?

“What happened, Daddy?”

Em dressed as a pink poodle ~ 2007

Em- poodle

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Posted in Autism, diagnosis, Parenting

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The Dentist and Tiny Steps

Posted on February 28, 2013 by | 17 comments

“Take it out!” Emma said.  “Take it out!”

We were at the dentist’s office where she had just had a baby tooth pulled because it was obstructing the adult tooth from descending.

Five years ago when Emma had two cavities that needed to be filled on two baby teeth, we had to take her to the hospital and have her anesthetized as she could not tolerate having an x-ray let alone having a cavity filled.  The two baby teeth were capped and while she was unconscious the dentist applied a sealant to all her teeth as they are unusually porous and susceptible to cavities and plaque.  When she regained consciousness she cried, “Take it out! Take it out!  She then tried to pull the metal caps off her teeth.  I still remember sitting with her at the hospital, horrified as she screamed and cried and pulled at the caps on her two teeth, wondering what we were going to do.  After a few days, when she realized the capped teeth were not going anywhere anytime soon, she grew accustomed to them and stopped trying to pull them off.

Over the years Em has grown used to the dentist and dental visits and allowed him to clean her teeth without protest.  A year ago she sat still long enough to have multiple x-rays taken of her mouth and teeth.  This was a first!  Em was ten years old.  Now Em has four braces on her four front teeth and has a palate expander in place that she tolerates, though doesn’t much like.  (Who would?)  Two days ago she tolerated the dentist giving her a novocaine like numbing agent allowing him to pull her baby tooth.  This was a first and a huge milestone.

“Take it out!” she kept saying.  At first the dentist thought she was eager to have him pull her tooth, but I had a feeling she meant the numbing sensation.  “Do you mean take out the tooth or take away the strange sensation?” I asked.  “Take it out, Mommy.  This,” and she pulled at her upper lip, twisting it with her fingers.  “I know it’s an awful feeling, but it will wear off, Em,” I told her and then asked the dentist how long he thought the numb feeling would last.  The dentist told me it should wear off in about an hour, so I set a timer on my phone and handed it to her.  She held the phone and watched the minutes tick by.  Meanwhile I hoped beyond hope the dentist had given me a correct estimate and wasn’t being optimistic.

After the tooth had been pulled and the bleeding had stopped, he came by to check on her and saw Em with my phone and the timer counting down the seconds and minutes.   He laughed, “Uh oh, you’re going to hold me to it!”  Then he said, “You better give her something hot to drink, that will speed up the process.”

“Good to know,” I said.  “Hey Em, when we get home, I’m going to fix you some hot chai.  It will help that weird feeling go away.”  “Take it out!” Em said.  “Yeah, it’s going to make the numb feeling go away faster.” Em nodded her head and off we went with Em clutching my phone watching the seconds tick by.

By the time we arrived home there were about ten minutes left and Em kept repeating, “Take it out!  It’s okay, it’s okay.  Timer goes off and it’ll be gone!”

I fixed her some hot tea, told her to drink it and when the timer went off the numbness must have abated enough to make her less panicked.  About an hour and a half after the first shot she said she felt fine.

Tiny steps, taken one after the other over time, can and do take us far…

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