Tag Archives: autistic

An Analogy – Communication via Violin

Posted on September 4, 2013 by | 15 comments

*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.

15 Comments

Posted in Autism, communication, empathy

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Sensing Another

Posted on September 3, 2013 by | 39 comments

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

 

39 Comments

Posted in Autism, Barb Rentenbach, communication

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Speaking vs Typing

Posted on August 27, 2013 by | 73 comments

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

73 Comments

Posted in Autism, language, Speech

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Being an Anchor

Posted on August 2, 2013 by | 18 comments

Yesterday I wrote a post, Seeing But Unable to Believe about people who see people like my daughter and assume they are incapable of a great many things.  These are the people for whom presuming competence is not only the exact opposite of what they do, but is something they have trouble wrapping their minds around.  In the comments section of yesterday’s post, someone I adore, Chou Chou, who has been commenting on this blog for almost two years now, wrote, “…if I am walking in a confusing environment, I can hold Doc’s arm and find my way, and even lead the way. He doesn’t guide. He anchors.”  She was relating this to my thoughts about supporting my daughter while she types.   Even though my daughter can type independently, she is able to converse if supported.

“He anchors.”  I thought about this idea ever since Chou Chou left it here.  The idea of anchoring is one I love.  It is exactly what I hope to provide for both my children; to be an anchor.  Solid, stable, grounded, rooted…   Being an anchor, someone who provides both physical and emotional support for another human being.  I think we all need that, I know I do.  I have a number of anchors in my life and I rely on all of them.  In the context of supporting my daughter as she types, I am reminded of something Amy Sequenzia told me once when I asked her about being supported.  She told me it was more than physical support that was needed; she needed to be able to trust the person supporting her.

Trust.  When I am with someone who I do not trust it is impossible for me to relax.  If I feel I am doubted or am on the defensive I have a much harder time getting my needs met.  If the person who says they are trying to help me, keeps ignoring my requests, continues to tell me I should need something else, I become confused.  I do not, for a second believe I am alone in my response to those who say they want to help, but who seem unable to hear me when I tell them what I actually need.

If you’ve ever spent time in a hospital or have been in a situation where you were accused of something you did not do, or have been told that what you’ve stated is not believed, you will have an idea of what I am talking about.  In a world where people are living longer, more and more of us will one day have to consider living without the independence we might prefer.  Many of us will need assistance, many of us will be forced to rely on others.  Being an anchor for those who need support is something each of us can give to another, but it is also something most of us will need at some point in our life, or if you are like me, throughout your life.

One of my anchors…

*Richard

18 Comments

Posted in Autism, independence, Parenting

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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

20 Comments

Posted in Autism, Parenting, presume competence

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Emma’s Story

Posted on July 23, 2013 by | 51 comments

Emma told me I could post her story on here this morning.  This is a story she wrote yesterday with Rosie (Rosemary Crossley).  Rosie developed a technique more than thirty years ago to help people with a variety of issues, specifically those that make speaking difficult or impossible .  Em held onto a tube with one hand while Rosie held the other end as Emma typed.  Rosie began yesterday’s session by asking Emma to write a story that began with either, “once upon a time” or “one day.”  I was standing near Emma, with Richard, Joe and Em’s teacher, Katie, all watching as she typed the following.

“One day there was a boy called george. He had been in afight can’t tell you how he got into the fight but he was bruised all over.  He fought a lot and his teacher was very angry.  The next day he was all purple and his mother said you can’t go to school looking like that.  The very clever boy covered himself in flower and his teacher thought he was sick and sent him home.  The end.” 

Not sure I can actually continue writing here…  but I’m going to try… *Breathe*

I have read this story more than a dozen times already.  I know I’m totally biased, but I’m just going to say it – what an incredible story!  There are so many layers to it.  This story that Emma wrote with great concentration, with little pause is the first story she’s ever written.  She was focused and when asked about the word “flower” she verbally said “powder” in explanation.  Rosie explained that flower/flour are words that sound alike but are different in meaning.  Rosie explained that the powder kind is spelled “flour.”

But there’s more…  A little later Rosie brought out a math app called Math Magic where Emma proceeded to zip through addition, subtraction, multiplication and division.  None of this is particularly noteworthy, except that Emma has never been formerly taught division.  She was choosing the correct answers from a field of four.  A sample equation is:  “56 ÷ 8” and the multiple choices available were: 2, 9, 7, 6.  Emma chose the correct answers independently.    Allow me to say that again.  Division.  Emma chose the answers independently.

It was at this point that I felt so many things all at once it was almost impossible to speak.  But more than anything I kept thinking about how we continue to underestimate our daughter.  I had no idea she could do division.  Not only can she do division, she can do it quickly.  There’s another app Rosie recommended – Brain Pop and Brain Pop Jr. which Emma also did as we watched.  Not only did she listen to the short lesson, but then read all the questions silently, read the multiple choice answers and chose the correct answers.  It seems verbal speech is tricky, particularly when she is expected to answer questions verbally.  When asked to read silently and then identify the correct written statement by pointing to it, Emma did beautifully… about Ellis Island, no less!  The only interaction Rosie provided with both the math and Brain Bop was to use a laminated card that she silently moved across the words as Emma read and she did not allow Emma to point to any answer until she’d finished reading all the choices.

I cannot imagine how awful it must be to be so capable and yet treated as though you were not.  I imagine it must feel like being “bruised all over.” I imagine it must feel like you “fought a lot”.  My wish for my daughter is that she may continue to do all that she is doing, while we provide her with every opportunity to flourish and continue to show the world how very “clever” she is.  The only limitations are the ones we provide.

I am incredibly grateful to all who believe in her, all who have helped and who continue to help us so that we can be better parents to our daughter.  The list continues to grow…

Rosemary Crossley

Rosemary Crossley

51 Comments

Posted in Autism, facilitated communication, supported typing

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The Teen Behind the Blog

Posted on July 22, 2013 by | 9 comments

There’s a blog called, TeenTyper, written by someone who describes himself as, “an autistic teenage awesome boy.”  He started his blog two years ago when he was 14 years old.  On a recent post he wrote, “the feeling is bold saturated thimbles of strength.”  Em and I had the honor to meet the young man behind the blog while in Syracuse.  As he also lives in the same city as we do, we got together with him and his mom yesterday.   He is non-speaking, but types and so he and Em typed to each other for a little while and then I asked if it would be okay to talk to him about his blog.  He said it would.  I asked him, “Why did you start writing your blog?”

He typed, “i startd because my aggravation abt my spaz speaking.”

This is from his Subway Poem –

“Subway subculture asserting the stroll
I watch and try to look like another old soul…”

Later I asked him, “Is the blog a place where you want to tell people something specific or is it more a general way to communicate your thoughts, or something else?”

He typed, “neurotypical need to be more conscious abt mean stares and hearing my voice will help them understand who I am.”

From Let me say:

“Before you judge let me say
You need to try being me
Before you judge let me say
I feel awful when you overly stare at me
Before you judge let me say…”

We need to be aware of the harm we do to each other with our judgments and implied criticism.  We need to pause and take our time.  We need to give each other the benefit of our kindness, we need to slow down…  we need to talk less and feel more, we need to give one another the gift of acceptance, we need to stop with our projected fears, our desire for sameness, our impatience, our disregard for another’s humanity…  we need to embrace one another.

From Wasted Words:

“Words wasted on nonsense
Still
Define…”

I urge everyone to go over to TeenTyper and give it, and the “badass awesome” teen who writes it, some love and support!

9 Comments

Posted in Autism, Autistic Blogs, Blogs By Autistics

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On Being Fallible

Posted on July 19, 2013 by | 45 comments

At the conference Em and I just returned from I was confronted by someone who told me I was being disrespectful of my daughter.  She actually went further and said I had spoken “inappropriately” to her.  Furthermore she said these things to me in front of a room filled with people, all of whom could hear her, because she was leading the presentation.  Yup.  It was one of those moments when you really wish the floor would arbitrarily open up and allow you to slide into its blissful dark, abyss.  It was also the final day of the conference and I was feeling pretty fragile and emotional.  My ability to filter was at an all time low, my ability to think logically was pretty much non-existent, and finally, my ability to hear her and reflect on her words without defensiveness was hovering in the red-high-alert-grab-your-oxygen-mask-we’re-going-down-save-yourself range.  It was one of those moments you wish had never happened, but more to the point you wish you’d never said the thing that was being criticized so publicly.  It was a moment of intense shame.  And my first thought was – defend, defend, defend!

But remember, I was in overwhelm before her words had found their target and I didn’t feel strong or able to fight back, nor did I feel I was in a position to fight back, after all not only was she leading the workshop, she was someone I have a massive amount of respect and admiration for.  This is someone I had looked forward to seeing ever since I was told we would be in her workshop.  This was the person I’d read about and anticipated meeting with eager excitement.  Meanwhile there my daughter was, typing out “I’m happy.”  To which she said, “I’m guessing you’re happy when your mom gets called out on her behavior.” Ouch. Ouch.  Ouch.  Let’s just get a knife while we’re at it and see some real blood.

But here’s the thing…  she had a point.  The details aren’t relevant, what is, though, is that if I am speaking to my Autistic child in a way that I wouldn’t speak to my non autistic child, then that’s clearly a problem.  If I am speaking to my Autistic child in a way that I would speak to my non autistic child, (as was the case in this instance) and someone who has spent their life working with children and advocating for them calls me out on what I’ve just said, I need to, at the very least, consider their words and reflect on my own.  I have never claimed to be an ideal parent.  Years of parenting has taught me that sometimes I get it right, often I get it wrong, but hopefully I will always be willing to look honestly at my actions and behavior without defensiveness, but with a desire to learn and be the best parent I can be one day at a time.

So if someone says something that really hurts, when their words pierce, I’m old enough and smart enough to spend some time thinking about my reaction and at least try to see where the other person is coming from.  Sometimes people say things without the necessary information, sometimes people say things that hurt because they are operating from a set of false assumptions, and sometimes hurtful things are hurtful because there is truth to their words.  I’ve spent the last 36 hours trying to figure out which of these was true or if it was a combination of things, but more importantly, I have reflected on whether the sentence I said to my child was the best way I could have spoken to her and if it wasn’t, what would have been.

Even in my state of overwhelm, I was able to whisper to Em right away, “I’m so sorry, Emmy.”  And I was.  But I was also angry with this other person.  I still felt the need to defend.  I still wanted to “save face” in front of this room filled with people.  But instead I went silent and tried not to cry.  Shame.  Shame is brutal and though all of us have probably felt first hand what it feels like, we also probably, inadvertently have shamed others without realizing it or even meaning to.  I know I have.  The above example is a case in point.  Without meaning to – I had shamed my daughter by questioning out loud what she’d just typed.  I get that.  I have enough humility to know that I make tons of mistakes… every day…  but I also know the beat up job that is my default reaction to making a mistake is not a healthy one.  I’m working toward more measured and thoughtful responses.

One of the things I love about Pascal Cheng, the first person to help me begin supporting Emma with her typing was that when I did something that he saw was unhelpful, he would/will say, “May I give you some feedback?”  He then says things like, “Instead of saying, ‘No!’ ask her if that’s the word she meant to type.”  He has taught me to try and give her just the right amount of resistance (to make sure that she doesn’t go to favorite scripts) combined with the emotional support and encouragement she needs to continue typing with me. Pascal models the same respectful interaction with everyone he comes into contact with.  When I grow up I want to be like Pascal.

But in the meantime, I am looking at my words and seeing how important it is for me to be aware and conscious and respectful of my daughter.  Perhaps the better question I must remember to ask myself is not – would I speak to my son this way, but, would I want someone else to speak to me this way?  The beauty of life is that  we can always improve if we want to.  And I desperately want to.  My goal isn’t to be “right” or never to do anything “wrong” or to make someone else “wrong” when they confront me, my goal is to have the willingness to look honestly at my behavior and the things I say and do, face my mistakes and learn from them.  That’s my goal for this short life I have been given.

Me and Em at the ICI Conference
Me & Em

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The ICI Conference – Day 2

Posted on July 17, 2013 by | 8 comments

Anne DonnallanDr. Anne Donnellan, Professor in the School of Leadership and Education Sciences at the University of San Diego gave the keynote address yesterday morning.  She said,  “I’m very happy to say, when it’s true – I don’t know.”  This sentence should be framed and placed inside of every doctor’s, educator’s and professional’s office.  In fact, this should be in every human being’s home, office, place of work, car… well, you get the idea.  Anne went on to say, “If you don’t know the answer, if you’re not sure, what are you going to say?”  She waited for those in the audience who speak to shout, “I don’t know!”  I have pages of notes from Anne’s speech which centered on how autism is mischaracterized as a communication, behavioral and social deficit, yet the massive sensory-movement issues that most Autistics experience is completely ignored.  Early in her presentation she said, “We didn’t notice people with autism have bodies.”  And a little later she said, “We tend to invent knowledge.”  I will be reading Anne’s book, Autism: Sensory-Movement Differences and Diversity by Martha R. Leary and Anne M. Donnellan.

The bulk of the day was spent supporting Em in her typing.   (I dreamt last night Em had taken over Emma’s Hope Book Face Book page!) Our session with Rosemary Crossley was terrific, with a young woman who is aiding Rosie, and all of twenty years old, came over and expertly supported Em in her typing.  Em proceeded to inform us that “math is not my favorite subject in school” and “The subject I like is english.”  Which… yeah…  because excuse, me young lady, but there’s this blog with YOUR name on it, all set to go!  Trying hard to contain my excitement.  Em then typed, “I am very creative.”  And in answer to my question about whether she’d like to maybe write something for the blog at some point, she typed, “I would like that.”  Yet as I write this, I paused just now and asked her if she’d like to write  something now, to which she gave me a resounding “NO!”  But she did say that she didn’t mind if I quoted her in the sentences above.  This is a work in progress for both of us!

Emily and Mark UtterAfter lunch Em and I watched a wonderful documentary by Mark Utter called, “I am in here.”  Before the movie began Mark typed, “i am totally happy you all are moving with me down this fine river.”  Mark is wonderful, and I have to say, he is one of my new favorite friends, even though we have exchanged few words.  I intend to devote a post to his creative and moving movie about what daily life is like for him and how he would respond to people were he able to talk.  Mark is one of a number of people we have met that I hope to stay in touch with.

PascalLater Em and I met with another family who also live in New York City hoping to have a conversation between Em and a non-speaking teen.  Pascal agreed to help facilitate, but as it turned out, I was able to work with Em pretty well with only a few pointers from Pascal.  It was a great day, though it’s really hard work for Em.  Later she typed with Pascal, “Much of my work with people is patterns and things like spelling is like that…”  And then she added, “And I love to work with Pascal.”
This photograph of Pascal was taken by Emma.

I must end this post now, but not before saying, these conferences are profound.  They are profound because of how they are completely unlike the world we live in.  They include, embrace and celebrate difference.  Every person is treated with respect.  People are allowed to be, without judgment.  It is bittersweet to be here, because this afternoon we will have to leave and return to the world that is not even remotely like this tiny piece, of what can only be described as, paradise.

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Live From The ICI Conference In Syracuse!

Posted on July 16, 2013 by | 14 comments

IbYesterday began with Ibby, as any proper day should.  Ib, assistant professor, blogger, activist, advocate and all around amazing human being, gave the keynote opening day address at the Institute on Communication and Inclusion here in Syracuse.  The room was packed.  Everywhere you looked people milled about from all over the country, ranging in age from under ten years to over seventy.  Some sat in wheelchairs, others moved their bodies back and forth, from side to side, some quickly in staccato gestures, others more slowly and rhythmically. Verbal utterances were not cause for stares or frowns, this was not a “quiet room” but a room filled with the sound of human beings in all their vibrant diversity, being themselves without censorship, without admonishment.  You can’t go to a conference like this and not get swept up in the beauty of unedited human beings being.

Ib & SteveJust prior to Ibby’s address I met the wonderfully talented, Stephen Kuusisto of the blog Planet of the Blind. Steve is a poet, author, professor, disability advocate and Fulbright Scholar.  Douglas Biklen, Dean of the School of Education at Syracuse University introduced us. This is Doug’s final conference as acting Dean and so I am particularly grateful to be here before he leaves.

This photo of Ibby and Steve Kuusisto was taken during Amy Sequenzia, Ibby and my presentation, “Blogging to Communicate.”

RosieAfter the keynote, we went to our “Hands-On Skill Building Workshop” with Rosemary Crossley.  Rosie is the one who developed facilitated typing more than 30 years ago in Australia, so I was very eager to meet her, finally.  Rosie went around the room and asked people to introduce themselves.  When she came to Emma, Em sat up and said loudly, “I don’t want to type!  My name is Emma.” To which Rosie said, “Oh! Hello Emma, how old are you?”  Em responded with, “I’m nine.” (Em is actually eleven, but tells people she’s nine, when asked.)  “Have you ever been to Australia?” Rosie asked.  “Yes!” Em answered. This time, however Rosie had a small machine that she held with a “yes” and “no” button on it and a laminated square with the words “yes” and “no”.  “Have you been to Australia?” she asked again.  This time Em, without hesitation pressed the “no” button.  A little later Rosie came and sat next to Emma and asked, “What’s your favorite color?”  While supporting Emma’s elbow, lightly with one hand, Em typed, “Pink.  What’s yours?” Then Em astonished me by continuing to type, “I hate yellow.”  Hate?  Seriously?  I hate yellow too, but really, I had no idea my daughter hated anything, much less a color!  Presume competence.  I’m going to reread that post I wrote…

RalphLater in the day Ralph Savarese and Steve Kuusisto presented on “Autism, the Brain and Poetic Creativity”  where they led participants in a poetry writing workshop.  After which Emma typed to Pascal, “really am telling my sameness self that its good to find different ways to that things and watching Ralph is fun.”  So there you go, Ralph.  A solid endorsement from Em.

Amy Sequenzia gave a personal and moving presentation about blogging and why she blogs, followed by me and then Ib who also spoke about why blogging is such a terrific platform, not least of all because it is interactive and immediate.  Ib then opened our presentation up for questions and comments and then…

Ib, Amy & Ariane

well, and then Em indicated that she’d like to say a few words, so Ib introduced her and Em took over, beginning with – “Ladies and Gentleman…” and ending with a list of all the various doctors, therapists, and people we once took her to see, followed by a list of all the people who now help us.  “Now we have Pascal and Harvey and Ibby and Ibbia (because Ibby has been given her own country, apparently) and Soma…”   Take it away Em!

It's the Em show

*I have to interrupt this post as I have to get to Anne Donnellan’s keynote starting in 30 minutes.  Peyton and Dianne Goddard sent me a copy of Anne’s book two weeks ago and I’ve been carrying it with me ever since.  So when I ran into Anne yesterday I pulled it out and showed it to her.  She is lovely and I cannot wait to hear her.  More to come!

One last photo though before I leave you…

Me with Amy and Ib – you guys rock!

Me, Amy & Ib

 

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Being the Adult I Want my Children to Become

Posted on July 12, 2013 by | 20 comments

“Are you the adult you want your child to grow up to be?” ~ Brené Brown from her book Daring Greatly.

Are we being honest here?

Because if we’re being honest, then – no, no I’m not.

I could hit the publish button right now and call this a post, but I’ve got a couple of things to add here.

From Daring Greatly – “…we should strive to raise children who:

  • Engage with the world from a place of worthiness
  • Embrace their vulnerabilities and imperfections
  • Feel a deep sense of love and compassion for themselves and others
  • Value hard work, perseverance, and respect
  • Carry a sense of authenticity and belonging with them, rather than searching for it in external places
  • Have the courage to be imperfect, vulnerable, and creative
  • Don’t fear feeling ashamed or unlovable if they are different or if they are struggling
  • Move through our rapidly changing world with courage and a resilient spirit

Now read every one of these things as a directive for yourself, like this:  Embrace your vulnerabilities and imperfections.  Feel a deep sense of love and compassion for yourself and others.  Carry a sense of authenticity and belonging with you, rather than searching for it in external places.  Don’t fear feeling ashamed or unlovable if you are different or if you are struggling.

I am becoming increasingly aware of how often my critical responses to my children are often reflections of my deepest insecurities. I don’t want them to make the same mistakes I’ve made.  I think I can control their future by making sure they understand just how serious all of this is.  I admonish my son for forgetting to feed the cat, while remembering the time my parents left me in charge when I was fifteen, two years older than my son is now, and how I forgot to feed the horses and had nightmares for years afterward.  I try to remember to phrase my sentences as – You forgot to feed the cat, what might help you remember?  Instead of my knee jerk response of “Did you forget to feed the cat again?  Why can’t you ever remember to do that?”  Because, wow, there’s a world of difference between the two…  and yes, I’ve said both.  The first is when I’m being the adult I want my children to grow up to be and the second is the adult I hope beyond measure they never become.

I worry about what a neighbor is thinking when he asks how we are and my daughter responds with, “Yeah, baby Teddy can’t go on the pogo stick.  Baby Teddy might fall and hurt his head.  Baby Teddy will cry and have to go to hospital…” and then describes how the doctors are going to have to put a breathing mask on baby Teddy.  I stand there feeling increasingly uncomfortable, because I care what our friendly neighbor thinks or because I’m afraid of what this might say about me and the things we put her through years ago?  And even as I am writing this, I marvel at how she really was answering his question, far more honestly than I ever would dare.

The truth is my children are closer to the adult I’d like to be, but am not yet.  I figure since my husband is hard at work figuring out the whole anti-aging thing, I’ve got at least as many decades ahead of me as I’ve got behind me to work on this goal.  I’m grateful for that, really.  I’m going to need every year I’ve got left.

“Have the courage to be imperfect, vulnerable, and creative”

Yup, check.

“Move through our rapidly changing world with courage and a resilient spirit”

Yup, check.   I got this.

Reflections in a puddle

Reflections in a puddle

 

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Beauty in Being

Posted on July 11, 2013 by | 26 comments

A couple of years after my daughter was diagnosed with autism, a well-meaning acquaintance said to me, “God must think you very strong.”  It was one of those comments you wish the person hadn’t said.  I understood they meant well, I understood it was some sort of convoluted compliment, I understood they meant to be something like supportive, but it felt awful.  Least of all because I have never gained any solace from the existence or non-existence of the G-word, but mostly because of its obvious prejudice to those who are Autistic.  The person then followed that sentence with this next one, which was like a second jab to the solar plexus.  “I could never handle an Autistic child.”  I stood there in stunned silence.

At the time I think I probably looked away and tried to untangle the multitude of feelings that surged through me.  But today, now years later, I have a couple of things I want to say.  Let me tell you about my beautiful, perfectly wonderful, very human, child.  She is like the sunlight that glimmers off the leaves of an Aspen tree.  She is that first ripple that appears on a crystal clear lake, extending outward in ever-widening arcs.  She is the sound of rain on fallen autumn leaves, she is the smell of sage brush after an electrical storm, she is the glimmer of morning sunlight when it first appears rising up over snow capped mountains, she is imperfectly perfect and a gift and yes, a blessing.  And if I’m going to be completely, utterly selfish, I must say this:  she has taught me more in her short eleven years of existence than any book, spiritual leader, graduate class, academic study or person I’ve ever read, listened to or met.

I know Emma’s life will have challenges because of her specific neurology.  I know she will often have to fight harder, prove herself more often, work more doggedly and persistently than her non Autistic peers to accomplish things that many do not even consider accomplishments, but assume are a given.  Yet there are some things she can do and will learn to do that will be easier for her than many of her non Autistic peers.  I no longer see autism as a road block, but more as a different road all together.

Every morning I wake up filled with gratitude for my family.   But it is my daughter, my beautiful, beautiful daughter who has introduced me to a world I never knew existed.  A world that is beyond anything I could have imagined, a world filled with other Autistic people who enhance my life and the world on a daily basis because of their existence.  Emma has taught me the true meaning of gratitude.  She impacts my life in ways I will never be able to fully describe or express.  Gifts are like that.  Strength has nothing to do with receiving gifts.  It does not require strength to see the good in others.  It does not require anything actually.

That is another lesson my daughter has taught me –  the beauty in being.

Em testing out her new pogo stick.  Her record?  62 bounces.  

*Blue Pogo Stick

Related articles
  • Reflection (whereartandlifemeet.com – Ariane’s other blog)

 

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We Are Like Your Child: The Blog

Posted on July 10, 2013 by | 27 comments

*To Emma’s Hope Book followers – This post was password protected so that those I quoted could read it first and give their approval before I published.  They have and now it is here for everyone to read!

We Are Like Your Child is a new blog created by a group of people, all of whom have been instrumental in helping me understand autism and what it means to be Autistic.  These are the people I think of as my mentors.  They have helped me more than I can describe.  They are a diverse group in every way, but one.   They all have lived their lives with the same neurology as my daughter.  They are Autistic.  These are the people I often reference when I talk about how our lives changed.  It is their voices, their lives, their stories that have changed mine.  To say I’m excited to introduce their collective blog to all of you, doesn’t really sum up what I’m feeling!  I am grateful.  I am incredibly grateful.

This is exactly the sort of blog I would have devoured, had it existed in 2004 the year Emma was diagnosed.  The year when everything was so terrifying.  The year I began, unsuccessfully, to look for adults who might give me insights into my child’s mind.  We Are Like Your Child is created by those adults.  I will be following eagerly and closely.  Posts so far have included such topics as time agnosia, how one person dealt with having meltdowns as a child, routines and what happens when they are disrupted, and life skills.

A number of the blog’s creators agreed to answer a few of my questions.  (Thank you everyone!)  What follows is a group interview representing the many voices and points of view of its creators.

What is “We Are Like Your Child”?

“We Are Like Your Child is a collective, community blog by disabled, mostly neurodivergent folks.  The name comes from the whole declaration of “You aren’t like my child!  You can X, Y, and Z!” that we hear all too often.  The thing is, my way of doing Z, Y, and X is vastly different from how most people do, because I have a profound inability to do Q, G, and -7 but am absolutely rockin at P, F, and pi or whatever.  So this is kind of a place to write about our self accommodating mechanisms, the workarounds we use to function in a world not even a little built for us.  It’s a collection of coping strategies.  It’s our difficulties.  It’s our strengths.  It’s a collection of awesome people talking about our unique problem solving. ”

“We are more like your children than you know… and while we are all different, we are a roadmap of sorts, a set of guideposts pointing to the many potential directions your child may end up journeying to in the course of their life.”

“There are difficulties and sometimes they are very difficult. I actually do talk about them on tinygracenotes fairly often but since it is in the context of relating to what someone else is asking, perhaps that does not stand out the way it needs to. In this blog, we want to have our stories show that things are sometimes difficult and sometimes very difficult, and yet we live lives.” ~ From the post Lost, Mistimed and Melty.

Why did all of you create this blog?

“The most common stories in the media about disability tend to be inspiration porn or people who have a disability but have never had any problems ever (a subset of inspiration porn) or are the tragedy, doom, gloom narrative.  We are presenting a bit more reality than that.  Reality is sticky and messy and complicated and beautiful and difficult and sparkly all at once.”

“We love your child.  What?  You say we do not know your child?  No, maybe not.  But your child is a member of our tribe, our neuro-tribe, our extended family of those who share similar types of brains and similar ways of being in this world and so we do love your child and we want to try to help the Hard Knocks in their School of Life fall a little softer than they did on us.”

” The number one most important thing to guide you in your journey of parenting an Autistic child is your child.  Listen to your child – really listen.  The number two most important piece of your map in the huge love you have for your child.  Feel that love, feed that love, let that love guide you toward doing the best for your child.  We want to be the third big resource for you.  We are the grown-ups who used to be your child.  We want to help your child.  We want to help you.  We created this place as a bridge between our world and yours where we can meet and conspire.  Our collective job is to make the world a better place for Autistics and , specifically, for the Autistics you know and love.  Let’s work together to make that a reality for all of us.”

Yay!  Who among us doesn’t want to work together to make this world a better place?  I do!  I do!  *Jumps up and down.

Ahem.  My next question:  Who do you want to reach?

“I’m hoping to reach other disabled folks, really.  But I am also hoping to provide a resource for people who know and love disabled kids.  If we’ve tried 8,000 things, none of which are “well don’t be autistic then” and had some success, then maybe that’ll mean some kid doesn’t have to reinvent the wheel.”

“We want to reach other adults who are looking for ways to be in this world that suit their needs better.  We have advice from our own experience.

“We want to reach those who love autistic adults and want to help make their lives better.  We can tell you what kind of help we appreciate and explain why help that is not very helpful is… not very helpful.

“We want to reach parents of Autistic children.  Your child’s diagnosis was not the end of the world!  It was the beginning of a new and beautiful life as a member of our tribe.  Your child is not a tragedy!  Your child is beautiful and we want to rejoice with you in the diagnosis that will help your child get their needs met in ways you never dreamed possible.

“We want to reach anyone who wants to know that the lived experience of autism can be difficult, yes, but can be indescribably beautiful as well. We want to reach anyone who is open to learning about Autistic people and how to accept us, how to live co-operatively with us, or even how to be a happier Autistic yourself.”

The guidelines for submissions can be found ‘here‘, but in addition to what a couple of the creators had to say, I just had to quote from their blog:  “So you think you want to submit to We Are Like Your Child? Great! We want to hear from a large number of people, about how you manage to exist in a world that isn’t made for you, and yet like yourself anyway.”

Who can submit?

“We do not take submissions from not disabled people.  Well, I mean, they can send them, the system won’t explode, but we only print submissions from disabled people.”

“We also don’t print submissions that amount to “I just decided to act normal yay me” or “woe unto me life is terrible bc disability.”  Those markets are pretty saturated.”

Do you encourage people to ask questions?

“Yes!  Please ask questions!  We have a facebook page and we also are all reading comments on the blog itself.”

A wonderful new blog has been born.  Let’s welcome it into the world!

The Blog:  We Are Like Your Child

The Facebook Page:  We Are Like Your Child

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Protected: “We Are Like Your Child”

Posted on July 9, 2013 by | Enter your password to view comments.

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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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