Author Archives: arianezurcher

Justifying Our Words

Richard and I have conversations that other people might find odd.  We have little inside jokes we think funny, but that no one else is likely to agree.  We reference conversations we had years ago with a single word or sometimes even a look.  It’s the same with our son and daughter.  In fact, with all of my family and close friends I have at least one or two references that we think funny, but that others witnessing might not understand or see the humor.  With Emma, our inside jokes often come in the form of music.   We will sing to one another or utter a sentence said by someone else years ago, but that now makes all of us laugh.  For no particular reason one of us will say, “Get down Angelo!” and we will collapse in hysterical laughter or instead of saying “Good morning” we will mimic the sound of a quail.  The other will then respond with a similar noise and it is better than any greeting made of words.

When Emma began writing to express her thoughts, insights, and experience of life, I thought she would be so relieved to finally be able to communicate these things to us and the world.  So when she didn’t seem particularly eager to write, I wondered how and why that was possible.  I know communicating in language, whether it is in written or spoken form is difficult and hard work, but I couldn’t figure out why she wouldn’t be overjoyed to finally have this connection with other people.

A few months ago I asked Emma about something and she wrote, “Words are not as meaningful to me as they are to you.”  I think about that sentence a great deal.  Emma then told me she senses people.  She wrote, in reference to a question about someone who works at her school, “I can hear her.”  She then added “I feel her.”  I used to be confused by these sentences, but over time I have come to believe Emma means this literally.  Barb Rentenbach, the co-author of the book she wrote with Lois Prislovsky, I Might Be You talks about this as well.  Emma has an acute sense of people’s inner life and as a result, having to translate all of this into words must be tedious and (this is my interpretation of what it might be like for her) a step backwards.

Richard has a theory that Emma is operating at a “higher vibration” or frequency than either of us.  I have the same thought, but use the words a “higher plane,” which has the same meaning.  We both believe Emma is capable of a more sensitive and intense understanding of people than we are.  If I think about those I am close to, I am in tune to their vibes at a higher frequency than I am to strangers.  But what if I was attune to all people I came in contact with at that same level of intensity?  What if I “felt” them the way I can feel my husband and close friends?  What if I sensed the essence of them before they said a word?  What if the words they then said, rote responses to questions like “how are you?” were untrue?

We, non-autistics, tend to view our neurology as better, more efficient, less socially awkward, but in many ways our word-heavy way of communicating is less truthful.  We say things we don’t mean.  We say things we don’t believe, we agree with people we think are more powerful.  We are easily intimidated.  We are swayed by groups of people who share beliefs, even if those beliefs are not something we agree with.  We learn at an early age to question our instincts, to tamp down our emotions, to apologize when we are not sorry, to say things we do not mean and then, once we are adults, we use words like “polite,” and “kind” to justify the lies we tell.

“Words are not as meaningful to me as they are to you.”

Emma, Barb Rentenbach and Lois Prislovsky

Emma, Barb Rentenbach and Lois Prislovsky

“Talking is Easy, But Saying What I Mean is Hard”

Most of us, who have spent our lives using spoken language as a way to socialize and convey what we are thinking, do not ponder what it would be like if we could not do so.  Most of us who are able to speak do not spend time imagining what it would be like if we could speak, but what came out of our mouths did not necessarily match what was in our minds, or wasn’t what we wanted to say, or was taken to mean something else.  For those of us who speak and have little difficulty having a conversation with another it is difficult to imagine what it might be like if we could not speak at all.  We easily tune out our environment allowing us to focus on what is being said by another person.  Asking questions comes naturally, and without thinking we ask for clarification about things we don’t understand or want to know more about.  When we cannot hear something or lose part of a sentence spoken by another, we ask to have the part we didn’t hear repeated, or request that it be said in a different way.  And even so people misunderstand each other all the time.

But what if we could speak only a little and those hard-earned words we finally managed to say were met with confusion, irritation, even anger and led to misunderstandings.  Or what if speaking words was so difficult it was easier to utter sentences constructed by others, sentences that held special meaning to us because it reminded us of a happy or sad or anxious or frightening time. Whenever one of those emotions surfaced, we would blurt out that sentence from the past, because it so beautifully captured what we were feeling now.  Maybe though, other people who did not understand or know the meaning they held for us, took them to mean something entirely different.

A blogger friend, E. of the fabulous blog The Third Glance wrote an amazing piece, Words, a couple of years ago about trying to participate in a conversation with a group of friends.  I’ve never forgotten that post, it was one of a number of posts that radically changed my thinking.  You can read it by clicking ‘here‘.  She describes wanting to keep up with a conversation that a group of people she knows is having in a busy place, while trying to filter out the noise that comes with being in a public place, the stress of trying to figure out when it would be appropriate to interject a comment, the pressure of knowing some sort of response is expected of her, and not being successful.

Yesterday Emma wrote, “Talking is easy, but saying what I mean is hard.”  I understand that when she wrote that, she meant it literally.  Emma “has language” yet cannot carry on a spoken conversation.  Emma cannot answer with spoken words questions like, “What did you do in school today?”  Or “What did you think of that movie?”  Or “Which student in your class do you like best?”  Or “What’s your favorite subject?”  Or even “What are the names of the other students in your class?” or “Where do we go to borrow books?”  As a result all those so-called reading comprehension questions are met with silence, or with words that seem to have nothing to do with the question asked.

The other person then draws the conclusion that Emma does not understand the question, or cannot read, or isn’t interested, or doesn’t care or is intellectually disabled, impaired, has a disorder, a disease, is afflicted, suffers from, is a puzzle piece, is locked in her own world or any other word or phrase used to convey what we believe to be true because of our understanding of her and those like her based upon what she can or cannot say with spoken words.  This is the same girl who wrote, ““I can’t talk the way I think.  Where is the label for that?”  The same person who eloquently answered questions about functioning labels, stimming and autism, ‘here‘, ‘here‘, and ‘here‘.

“Talking is easy, but saying what I mean is hard.”

Emma Playing the "My Mouth is Glued Shut" Game

Emma Playing the “My Mouth is Glued Shut” Game

Emma’s Story Written Entirely On A Qwerty Keyboard!

Recently we painted both the kid’s bedrooms.  They each found the colors they wanted.  Emma chose a beautiful sea greenish blue and a luxurious red for the baseboard, exposed pipes and doors.  She picked out a gold-colored mesh to cover her new four-poster bed.  Her new room is beautiful and I have found myself wandering into it, just so I can soak up the beauty of her newly painted walls, her princess bed with golden, cascading canopy and all her stuffed animals filling the floor to ceiling bookshelves.

Yesterday during Emma’s RPM (Rapid Prompting Method) session Emma wrote that she intended to write a story.  I’m including a link here to the post I wrote not long ago entitled “How We Got Here” for those of you new to this blog.  This is the story Emma wrote by typing on a qwerty keyboard attached to an iPad.  This is Emma’s first full story written entirely on a qwerty keyboard!  And as always, Emma approved this post and the accompanying photograph of her room.

                               The Girl Magician

From the bedroom of a house in Southern Georgia, there lived a girl named Judy.  Her room was dazzling.  Her time was spent by herself, and she liked it that way.

She had visiting hours for family to check out the best room in the house.  When visiting hours were over, Judy got to work on secret projects.  She noticed that when she changed the color of her scarf, many other things changed also.  When the blue scarf attached to her, she became very talkative.  The orange one made her laugh and the brown one made her cry.

Judy wore a yellow scarf during visiting hours one day.  Family was calling her name, but they did not see her.  She was invisible.  Judy was someone with magic powers.

The End

The Princess Bed with bookshelf filled with animal friends.  Notice the newly painted blue walls with red trim!

The Princess Bed with bookshelf filled with animal friends. Notice the newly painted blue walls with red trim!

Emma’s Question To You

Last week during Emma’s RPM session with B. they discussed interviews, the act of interviewing another person and the reasons one might interview another: for jobs, schools, etc.  They discussed where an interview might take place, one on one and in person, a group interview, by telephone, over email, etc.  I don’t have Emma’s permission to write about the interview she then conducted with an imaginary person, but as a result of all of this, I decided to continue with this idea of an interview in our session at home.  So I asked Emma whether she wanted to be the interviewer or the one being interviewed.

Emma wrote, “I want to know what you think about autism and am curious to understand why wasted time is spent being against a way of thinking.”  Later she added to that last part, “and being.”  So the sentence read, “I want to know what you think about autism and am curious to understand why wasted time is spent being against a way of thinking and being.”

Whew.  Talk about a great question!  I told her that I believed there was so much more we do not know than we know about all neurology.  I mentioned that with  Autistic neurology in particular, there is a tendency to state as fact a great deal that is not fact, but is really an opinion.   I told her that her writing has so completely changed my thinking about not just her, but autism in general.  I talked about how people fear what they do not understand, how they make up stories and confuse ideas and opinions as facts.  I discussed how assumptions are made because people like to believe they know things, even when they don’t and how people would rather believe something that isn’t true than sit with the discomfort that can come with not knowing.

And then I asked her if she wanted to know what other people thought about her question, or was this a question specifically for me?

Emma wrote that she would like to know what others think.

So I’m throwing it out to all of you… think of this as Emma’s first interview question to you.

“I want to know what you think about autism and am curious to understand why wasted time is spent being against a way of thinking and being.”

Emma's "Eyes and I" project

Emma’s “Eyes and I” project

“Picture Day Moments”

Yesterday was picture day at Emma’s school.  Over the weekend I went to the photographer’s website, paid for the photographs online, chose which packet we wanted and then filled out the little envelope that had been sent home and placed it in Emma’s back pack.  Emma and I discussed picture day and she carefully chose what she wanted to wear, a red velvet dress worn with black velvet leggings.  She’d washed and rinsed her hair the night before with particular care, and as she waited for the bus, she smiled at me and said, “Smile!”  I laughed and told her I couldn’t wait to see her photograph. The bus arrived and off she went, sprinting up the steps, with me waving good-bye.

That afternoon I had a meeting at her school with a few people from her team.  I was informed that there’d been some issues in the morning with Emma distressed.  Something about wanting to leave the room.  There was mention of her wanting to leave the room because of it being picture day, but that she had to stay in the room and was not allowed to leave.  I assumed that was because the other children were waiting their turns too and didn’t think to ask for more information.  The conversation veered off to other, seemingly more important, topics.

When I returned home with Emma I opened her back pack to find the envelope for picture day just where I’d left it.  No one had taken it.  Still, I didn’t put two and two together, didn’t think to ask Emma about it and besides, she’d already been asked to write with me that afternoon at school.  I emailed her teacher telling her the envelope was still in her back pack and received a reply that they hadn’t seen it and therefore assumed that I did not want Emma to have her photograph taken, but that she had been included in the class photo.  And I felt that awful feeling when your throat feels swollen and you can feel your heart beating and your chest constricts and your breathing becomes shallow and your vision blurs.

This morning I spoke with Emma about picture day, telling her there’d been a misunderstanding and how sorry I was.  I asked her to talk about it.  She told me how upset she was that she didn’t get to have her individual photograph taken as the other children had.  “I’m so sorry” I kept saying, but I can’t make what happened any different.  I know it’s just one incident, something relatively small and in the grand scheme of things not particularly important, but you see, this is just one example of what occurs regularly for our kids who do not speak, or, as is the case with my daughter, cannot say what she necessarily intends.

There are dozens and dozens of “picture day” moments.  Little things where she is misunderstood, cannot initiate a complaint, is not asked the right questions, cannot “speak up”, cannot protest with a reason why, instead she is thought to have “behaviors” when she tries to leave the room.  Assumptions are made, well meaning staff decide they understand her and know what is going on, and maybe they do, but maybe they don’t.  How many “picture day moments” happen from one day to the next.  Expectations and questions gone unanswered, thoughts and feelings unable to be formulated into words, or words at the ready if others were only capable and able to support enough that those things could be expressed.  How often?

Teachers are trained in a definition of autism, that is incorrect.  A definition that assumes intellectual disability which is connected to an inability to make oneself understood, low IQ, problematic behaviors, unable to read aloud and therefore cannot read, a whole series of assumptions are being made daily about Emma and kids just like Emma, but those assumptions are based on a false premise.  Teachers must give our children state required assessments and those scores are believed to represent capability when, in fact, they do nothing of the kind.  Our children must prove that they are not the sum of what others believe to be true.

There is so much that is wrong with the way we think about autism and Autistic people and it begins with our children and continues from there.  Our children who are then put into schools, most of them ill-equipped to help them flourish, spend their days in classrooms where they protest in little ways all the time.  The Board of Education is a massive machine and it is one that must change from the bottom up.  The premise they are working from – that what our children who have the ability to speak words are saying exactly what they mean, that their spoken language represents what they are capable of, that those who cannot speak, who protest by biting themselves, hit their heads against walls of brick and concrete are demonstrating “behaviors” as opposed to actively protesting a system that is not helping them, curriculum is dumbed down, life skills are taught, a high school diploma is not a given, college is not viewed as a realistic goal, all of this is wrong, so very, very wrong.

How many “picture day moments” does a child have in any given day?  How many?

Picture Day ~ 2008

Picture Day ~ 2008

Words of Truth

“Raw thoughts are like savory understandings of yummy foods.” ~ Emma 03/02/14

Sometimes when Emma and I are working she will write something that I simply cannot follow in real-time.  It is only after multiple readings and many hours of pondering have passed that I can begin to make sense of certain sentences.  As Emma constructs a sentence to reflect her thoughts by pointing to the letters she wants on the letter board, my mind is working on another level.  I am transcribing as she points, so I’m concentrating hard on remembering the letters and figuring out when I can pause to write those letters down.

Will the pause create a disconnect?   Will it break her concentration?   How much will I be able to remember before I have to stop her to write the letters she’s chosen down?  Sometimes she’ll point to “I” then “a” and then “y” and I’ll have to stop and show her the letters and say, do you need to change any of these letters?  Sometimes she will erase all the letters, insert a letter between two others, but other times she’ll erase just the last letter and continue.  Sometimes she will say aloud, “No, keep letters” and we will proceed.  Often she will then write something so astonishing I cannot contain the surge of emotions that rush forward.

During all of this, Emma may twirl her string, laugh, say unrelated words, or look at the timer and comment about how much time is left.  Sometimes writing one sentence might take 45 minutes.  Sometimes that one sentence will remain unfinished and when we come back to it, she will simply say, “no” and we will move on to something else.  Sometimes the words are so seemingly unrelated I have to resist the urge to ask for clarification mid sentence.  Sometimes she will write something I cannot understand, but the next day will re-read it and think –  my gosh, that’s brilliant!

“Raw thoughts are like savory understandings of yummy foods.”

Seemingly disparate senses woven together to create a canvas of rich and varied depth and colors has me in awe.  We talk about autism and autistic people as having sensory integration issues, but I look at a sentence like this one and I question whether the sensory integration issues are mine rather than hers.  Emma has a wonderful command of the English language, she is able to express her senses in complex, creative and layered ways.  I am compelled to read and reread her words.  I savor them, exactly as the sentence states so matter-of-factly.   Her words…  painstaking…  one letter at a time, convey truth.

Truth

Truth

Emma Shines a Light on Functioning Labels

“People think I am troubled and can’t decide whether I am low functioning or can’t make sense of the words I say, but either way they are wrong.  So whatever label I am given it is meaningless.  Neither one assumes my intelligence.  This confuses many.  What does a functioning label do for the person it supposedly describes?

“I can’t talk the way I think.  Where is the label for that?

“Why am I punished with a label that only detracts and doesn’t tell the truth about me?”

Earlier this year Emma wrote (from Emma Discusses Functioning Labels):

“Functioning labels are insulting to me.  And people like me do not like to have others label us as though we were meat at the market.

“I do not think Autistics should be given stamps of disapproval.   How would you like to be graded all the time?

“Money makes non-autistic people have a higher functioning label, but it is not a great way to measure the worth of a person or their intellect.

“I am more than any one thing.

“Most people do not behave well under the kind of pressure Autistic people must endure all the time.  A label belongs on a piece of merchandise, not on a human being.

“Do you think you function at a higher level than other people?

“Maybe others would not agree with you.

“Let us all  do the best that we can and stop othering everyone we decide is less capable.”

2010 in Colorado

2010 in Colorado

What We Would Have Done Differently

What We Would Have Done Differently Had We Known What We Know Now is the longer version of the above title for this post.

Someone left a comment on a post I wrote about a year and a half ago – Want to Know About Autism?  Ask An Autistic.  In the comment they asked a number of questions and because they are questions others have also asked, I’m writing a post devoted solely to answering them.

“What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benefit to Emma when she was still too young to type? How would you have gone about learning assuming competence?”

“What would you have done with Emma if you had not fought your seven year war?”

The “seven-year war” they are referring to is one I describe in that post detailing all the things I did upon receiving my daughter’s diagnosis.  To contemplate what we would have done differently had we known what we know now is both exhilarating and painful, but I’m going to give it my best shot…

The short answer is – we would have done everything differently.  The longer answer is vast, so vast I don’t know that I can do it justice in just a few paragraphs, but I will try…

Once we were given her diagnosis I would not have done any of the therapies suggested other than occupational therapy.  I know this will strike many as radical, even negligent, but I am speaking very specifically about my daughter.  Right from the beginning, knowing what I know now, would have changed all of my thinking, reactions and response to my daughter.  All those years spent trying to “help” her were years marked by fear, distress and worry.

I know now how sensitive Emma is to other people’s emotions, how she picks up on all of that easily and how distressing it can be for her.  So there are things I would have done that actually have nothing to do with Emma, but that would have helped me be a better parent to her.  Reducing my fear and constant worry would have been helpful to all of us.  In order to do that I would have had to ignore pretty much everything I was being told about autism and what that meant for my child.  The information we were given in 2004, the year Emma was diagnosed, was presented as fact.  And, as it turns out, it was incorrect.  I cannot think of a single thing we were told that did not prove later to be wrong.  Think about that for a second…  Every single thing we were told was incorrect.  Everything.  (Richard, correct me if I’m mistaken about this.)

A quick aside –  this is where, the way our society is structured has done none of us any favors.  If we lived in a truly inclusive society where autism was not denigrated, but was considered just another neurology, no better or worse than non-autistic neurology, where there was no judgement placed on either neurology, but more was treated as fact, where everyone came into contact with both neurologies on any given day in a variety of settings, “autism” would not be viewed with the fear and worry and even terror that it currently is.  When I say “inclusive” I am using that word literally and not code for “tolerating” or “understanding” or even “accepting.”  I mean a society where all neurologies are treated equal, without comparison of one, which is thought to be superior, to another considered inferior.  An inclusive society would mean “accommodations” would be embedded into our daily lives seamlessly and without fanfare, just as the many accommodations non-autistic people enjoy without even noticing them, do.

I would not have sought out the advice of the slew of doctors and specialists we carted her off to.  I would have surrounded her with music, singing, dancing, lots and lots of movement, gymnastics, swimming, trampolines, trapeze, art, literature, poetry (much of this we actually did do.)  Had Soma begun her center at the time of Emma’s diagnosis, I would have begun learning RPM and implemented Soma‘s suggestions for very young children right away.   Beginning with isolating the index finger to point independently and moving on to presenting written choices, for everything and anything – “do you want some M-I-L-K or do you prefer J-U-I-C-E?”  Writing each letter, while saying the letters out loud as I did so.  Encouraging her to point to the two choices I wrote.

There were many things, looking back, that we did right, things we did for both our children, such as getting her on skis when she was just three years old, horseback riding, lots of hiking, carrying her in a back pack, Emma loved being carried in a Kelty pack so she was able to view the world at the same height as me.  We took the children to the theatre, puppet shows, kids concerts, and traveled on airplanes when they were both babies.  I began brushing their teeth the minute that first tooth came in, I cannot tell you how grateful I am that I did that.  I began flossing their teeth the instant a neighboring tooth appeared.  I read to the children and provided both of them with lots and lots of books.  We exposed our children to art and literature; these are all things I would not have changed.

“How would you have gone about learning assuming competence?”

Presuming competence is ongoing.  It’s a practice, a mind set and it requires a leap of faith.  Or at least this is how I have come to view it.  Presuming competence is less about an idea and more about doing.  It’s an action, one I must be constantly mindful of and vigilant about doing moment to moment.  My past thinking is so ingrained, changing that thinking is something I must work hard at all the time.  First I must become aware that I have ingrained thinking that is not presuming in my child’s competence, second, I must accept that my ingrained thinking is unhelpful and hurts my child, and third slowly, slowly work to do, and  think about, things differently.

I’ve written about presuming competence ‘here‘, ‘here‘, ‘here‘ and ‘here,’ but I will just add that this is very much something I continually struggle to do better.  To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do.  It requires actively ignoring the more common thinking about autism and what that neurology means.  It means actively questioning everything I am told by people who present themselves as experts.  It means listening, really listening to my daughter.  It means sitting with the discomfort that I have done so much of this wrong.  It means forgiving myself for my mistakes.  This is the path I find myself on at present.

And truthfully it is Emma who is leading the way, my job is to follow, listen, learn and cheer her on.

Emma ~ January 29th, 2014

Emma ~ January 29th, 2014

“Talking is Hard”

*Emma gave me permission to post some of what she wrote yesterday during a meeting with a few of the people who are part of her team at her school.

Emma wrote, “Talking is hard because I like to say silly things that people take seriously and that is why I am misunderstood.”

In reply to a question about Emma’s thoughts on another class joining hers for a project they are working on together, Emma wrote, “Worrying that I will not be thought intelligent.  I am considered stupid by people who don’t know better.”

One of the staff commented that the more she writes with them, the more people will understand and know how smart she is.  Emma then wrote, “I know, but it’s hard work for me to write.”

This is something I think people may not fully appreciate – that communicating is tough and hard work for Emma.  It isn’t that she doesn’t want to participate in discussions or want to express herself and have conversations with people, it’s that what most of us take completely for granted is, for Emma, not easy and requires tremendous concentration and effort.

Someone else mentioned how Emma understands everything that people are saying and Emma wrote, “People think I can’t understand what they say, but my hearing is excellent.”

And a little later Emma wrote, “I know people don’t mean to be cruel, yet they are when they see someone like me.”

One of the team wanted to know if she was referring to specific people and how she deals with them.

Emma wrote, “They are everywhere.  I try to like them anyway.”

Before people comment on this post, protesting Emma’s words and insisting that people are basically loving and kind and that Emma must be unduly influenced by me, to write such things, I will tell you that from what I’ve witnessed when with Emma – people typically talk about her right in front of her, talk about her instead of to her, do NOT presume her competent, treat her as though she were at least eight years younger than she actually is, and though they may not mean, intend or feel they are being “cruel” this is the word Emma chose to write.  I cannot, even for a moment, really know what it is to be as intelligent as my daughter is and regularly treated as though I were not.  I will just add here that Emma is far more compassionate than I am.  So if anyone is being influenced, I hope it is me being influenced by her.

And for what it’s worth, this is what I think about all of this…  I think human beings tend to be neither saints nor evil, but that the vast majority of the human population has ingrained knee-jerk responses toward those who are different from them.  It is rare to find someone who does not hold some degree of prejudice, often without realizing it.  I believe most people, often unconsciously and without meaning to, respond to people who are different, whether that means their skin color, their accent, the way they dress or look or behave, with either fear, irritation, curiosity, jealousy, impatience or pity.  It is actually quite rare for a person to treat ALL humans they encounter with respect and as complete equals, without any trace of “othering”.  I believe segregation breeds “othering” and that an inclusive society of diverse people is the ideal, but that’s another series of posts.

Emma

Emma

The Result of Trauma

Recently someone commented on this blog, misconstruing a comment made by someone else, attacked that person, made accusations and as I was trying to remember how to block the person from making further inflammatory comments, they managed to write four more focussed entirely on me.   Each comment was more accusatory and hate filled than the next, and though they didn’t get through moderation, I saw them before deleting and successfully blocking the person and their various aliases.  And yet it made me sad to have to block them.

After years of blogging I have learned there is no use responding to such comments, because when someone has made the decision that you are hateful, and untrustworthy, really anything said will be taken as yet another example of what they’ve decided is true and reinforcing whatever it is this person believes.  Ironically, this is what happens to anyone who has been objectified, not treated as an equal or even a human being with respect and dignity, but rather has come to represent something larger than any single person can possibly be.

I have also learned that it is better to remove the offending comments than to allow them, as they do not lead to useful, productive discussion, but instead end up creating a mosh pit of anger and resentment, which can be far-reaching, upsetting and triggering to a great many, as opposed to just the one or two the original comments were directed to.

When a person has been traumatized repeatedly throughout their childhood, made to feel inadequate, told they are inferior, treated cruelly, belittled and teased mercilessly, they grow up believing, at least a little, that they deserved such abuse.  It also is common for that person to then become hyper vigilant of the same sort of cruelty being played out throughout their life with other people. It is a means of survival, as well as a way to protect themselves from more trauma.

For children especially, who’ve experienced on-going trauma, the tendency can be to see this same kind of abusive behavior that they grew up with, in others now that they are older.  Sometimes they may be correct and people really are being abusive, but other times their reaction will be incorrect.  People who wish them no harm, people who even care about them, will be viewed as abusive too, in keeping with all those people who hurt them in the past.  The original trauma will be replayed over and over leading to an unending cycle of trauma, reaction and trauma.

I’m not saying anything new here, you can read about PTSD, trauma and the result of systematic abuse over long periods of time by doing a little research yourself…

The point is, when we as a society, condemn a population of people, whether that is because of skin color, gender, neurology, sexual preference or anything else, we are doing long-term damage.  Damage that will result in an increase in addiction, depression, suicidal ideation, nightmares, anxiety, irritability, anger, difficulties forming close bonds with others and general feelings of isolation are a few of the symptoms documented.

Abuse is like that.  It has long tentacles, reaching out over decades and even entire lives, causing those who have been victimized to respond to others who wish them no harm, as though they were.

There is no easy answer, but if there is a single word that can be used, which will certainly not do more harm, it is love.  I know it sounds trite, too simple and clichéd, but  I believe it is the only answer.  As Emma wrote recently after reading a New York Times article about the ongoing fight for control of a vital highway in Afghanistan, “War is useless for making peace.”  Love has always been the answer.  Even if others cannot hear it, cannot believe it, cannot feel it, those of us who can, must be even more determined and vigilant.  Love.  Embracing those who are in pain, embracing those who are hurting, even and especially when they strike out.  And while we do that, we must protect ourselves and those who need our protection from any who are intent on hurting us with strong boundaries and the help and protection of others.  It’s a tricky balancing act and definitely something I am working on, but I am confident it can be done.

Love

Love

An Essay by Emma

*Emma asked that I post this today.

Yesterday, during Emma’s RPM session (not with me, but with the person who does weekly RPM sessions with her) she was asked to talk about something where she compared and contrasted.

Emma wrote the following…

                             “Part of All Buildings”

“For thousands of years and as long as buildings have existed, walls are covered.

“Generational trends have shifted.  The idea of paint versus wallpaper is one to give attention to.  Ask yourself what has changed in trends.  Did you ever think to believe the walls around you influenced change?

“Wallpaper with precious patterns are torn apart in many current buildings.  Paint has won the walls of this generation.

“If you believe your environment can change parts of you, keep reading.

“I am wondering if those who surround themselves with precious patterns have bigger imaginations than those with simple paint.  It is easier to become friends with colorful patterns.

“They can both get dirty.  In wallpaper the wear becomes welcomed more.

“I can do the research and report back!”

Wallpaper versus Paint

Wallpaper versus Paint

The Opposite of False Hope

Two days ago, Emma wrote her “Letter To the World” and yesterday while doing a throw-the-entire-house-into-disarray spring cleaning, I came upon a scrap of paper where I’d scrawled an enthusiastic note about something Emma had said.  I was so excited by her comment I had thought to write it down immediately lest I forget.  I even dated it.   The note read, 11/20/11 – Emma saw the next word we were about to work on and she said – “today we do “see”!  You see I did not realize then that Emma already knew how to read.  At the time, we had no idea of Emma’s capabilities.

Along with this note were books on counting, a whole book devoted to telling time, another that dealt with coins and the value of a penny, nickel, dime and quarter.  There were kindergarten level readers and books featuring simple addition and subtraction, along with multiplication and division flash cards that remained wrapped in their original cellophane wrapping, having never been opened because it was not believed Emma had mastered addition and subtraction yet, so how could we possibly expect her to move on to multiplication and division?

There have been other notes over the years, just like this one; little bits of paper where I jotted something down because I didn’t want to forget.  Usually noting things Emma said or did that proved to me that what people were saying about her were wrong, but often they were just moments, moments I wanted to record so that when I was feeling sad or discouraged I could see that there was progress, little glimmers of progress no matter how infinitesimal, they were undeniably there.

For those who have read what Emma is currently writing, all of this will seem a little strange.  You see, Emma has told us that she already could read more than two years ago when we were breaking everything down to its most basic, going over one word at a time, over and over, making sure she knew it before building on to the next and then the next.  All those years spent going over the concept of addition or subtraction, only to have her flounder when asked what 6+5 equaled.  Or when asked, “how do we spell “cat” she would remain silent or if asked to write the answer by hand or to type it, she could not and so we assumed she hadn’t learned the word yet.

We believed that because she could not read aloud a level one reader, or answer a question about the contents of that story, it meant she was unable to read or understand.  When she was unable to answer us, little things like, “where do we go to buy milk?” and she would giggle and say something completely unrelated like,  “it’s Mommy’s turn” I would then despair, look at my husband with fear and believe this proved, yet again, just how far we had to go.  There were other fears too.  Fears about what all of this meant to my child for her future, but increasingly I would try to head those off with a kind of stoic resolve to not give into them and to review once more the concept of quantity, or time, or value, or the spelling of a single-syllable word.

Of course looking back I see how wrong we were.  I understand now that the problem was she had no way of communicating to us what she knew.  She could not “tell” us, she could not “show” us in any way that we were able to see.  All those reading comprehension questions, all those work sheets, all that fear, all those days, months, years spent in terror…   I see this now.  I “get” it.  Now.  Now I get it, but for so long I did not.  For so many years I didn’t understand.  I kept thinking she couldn’t learn.  I kept thinking what was being said to her wasn’t understood.  I kept thinking that I had to use more basic language, that I was complicating things, that the answer was to dumb it down, to do more review, more repetition, more of the same, over and over until she could answer me in the way I believed showed she’d learned.

Meanwhile Emma patiently waited for me to understand.  Years went by and Emma continued to do her best, hoping, hoping we would finally catch on.  With Soma, Emma wrote how  grateful she was to us, her mom and dad, for “not giving up on me, I was so scared.”  And as I sat watching her type those words I wept.  Tears of gratitude for her, for not giving up on us, but also tears of sadness for all those years… years of misunderstanding, years when we just didn’t know.  Every time I would read about a child who did not speak, or did not have conversations using spoken language, but who typed incredible insights, thoughts and opinions, I believed they were an anomaly.  I didn’t dare believe my child could be like those few who were speaking out.  I didn’t dare hope.  I couldn’t.  It was too painful.

“They say hope is cruel for the hopeless, but maybe they are the cruel ones.”  Emma wrote this the other day and as she wrote those words I reflected on the irony of it all.  One day I hope this idea – that we mustn’t raise false hopes – will no longer be what parents like me are told.  One day I hope those people, the therapists, the educators, all those people, many of whom are in the field of autism, who mean well, but who do not know what our children are capable of, will realize how wrong they are and will stop trying to protect parents like me from what they believe is “false hope”, but it turns out is simply what they do not know and have not yet come to understand.

The hundreds of worksheets...

The hundreds of worksheets…

During the years when we labeled things

During the years when we labeled things

in large print before we knew she could read...

in large print before we knew she could read…

“A Letter To the World” ~ By Emma

                     “A Letter To The World

“I want to tell you that I am capable.  Daring massively, eager to prove my intelligence, I will work tirelessly so that Autistic children younger than me won’t be doubted the way I am.

“Plea-ing to the world, I ask that those who are not able to restrain their doubts, at least not mute voices like mine.

“Deciding stupidity bolsters egos while crushing lives with angry words disguised as kindness.

“They say hope is cruel for the hopeless, but maybe they are the cruel ones.”

Emma wrote this in response to my question, “What do you want to learn about?” (I gave her a number of choices ranging from people like Joan of Arc and Eleanor Roosevelt to geography, history, literature, creative writing or current affairs) “…or would you like to talk about something else?”  Emma wrote, “I want to talk about autism.”  When I asked her what, specifically, she wanted to discuss, she wrote the above letter.

*For all who would like to share Emma’s words with your friends and followers – we ask that you quote a sentence or two with a link back to this blog, and not all her words.  Thank you so much for your support, encouragement and enthusiasm.

Emma ~ 2014

Emma ~ 2014

“Crayons Have Feelings” By Emma

I’m always so excited when Emma tells me “put it on the blog” because my dream has been that this blog will be something she wants to, one day, take over as her own and where she will permit me to, occasionally, make a “guest” appearance.

What follows was Emma’s response during her RPM session to write about something she cares about in a persuasive manner.  She skillfully demonstrates theory of mind, empathy and an abundance of compassion I wish the rest of the world would try to emulate.

                     “Crayons Have Feelings

“The colors are many in a box of crayons.  All over the world people use crayons to make them happier.  It is never used as a way to punish.

“Did you ever think of what the box of crayons felt like when they were opened?

“Notice which colors are used the most.  They are ripped and sometimes broken.  The less popular colors, like brown, look so new they can be displayed in a museum.  Nobody plays with them.  They watch the other colors play and roll with their friends in the mud.

“Brown crayons are lonely.  Red crayons get the most attention.

“You should show the lonely colors on the front of the box.

“Do you have questions?”

I am persuaded,  Emma.

A Box of Crayons

A Box of Crayons

“Love Not Fear”

“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.”  ~  Emma on the topic of the three stem cell treatments we did in 2010

Fear.

This post had to begin with Emma’s words.

I’ve written enough to fill a book on fear and where that took us.  Stem cell treatments, spending all night on the internet searching for the next great “miracle” cure, taking my child from one specialist and doctor to the next, this is where fear took me.  I’ve deleted a great many posts where I express my tortured fear, but if you go to the first post, the post that began this blog almost four years ago, you will see in excruciatingly slow detail where fear took me.  Fear caused by those “alarming statistics” used ad nauseam by organizations like Autism Speaks, drives many like me to go to incredible lengths to “help” our child.  Blinded by abject fear we pursue things that can cause our children real harm, both physical and emotional.   The toll our fear can take on our children cannot be overstated.

I abhor Autism Speaks.  As the single largest organization claiming to know what autism is and is not, and worse, suggesting they “speak” for autism and those who are Autistic, Autism Speaks does more damage to my Autistic child than any other.  They have done a brilliant job marketing fear.  For transparency’s sake they should rename their organization ~ Fear Autism.  Donations pour in, large companies lulled into believing they are “helping” give their support.  Autism Speaks uses so much of their vast resources to hurt my child and Autistic people with that fear; what little good they accomplish in other areas in no way can counter the long-lasting and devastating damage they have done and continue to do to families who live in the kind of fear we once did.

I’ve written a great deal about fear on this blog, such as this post where I wrote about what I once believed:

What did the future hold for my daughter?  How was she going to get through life?  How would we be able to keep her safe?  How would she fend for herself?  Would she be able to fend for herself?  Who would take care of her once we were gone?  Fear.  Fear.  Fear and more fear.  And then, without even realizing it, I would find myself furious.  Enraged.  And my rage found the perfect target.  Autism.  Autism was what I was furious with.  Autism was what the problem was, so it stood to reason that if I could remove it, all would be well.  So this is what I set out to do.  Except that my daughter happened to be Autistic.  But if I didn’t say it that way I could continue to separate the two.  I could continue to tell myself I was fighting the autism and not her.  I could continue to believe that my anger with autism would not affect her.”

And this post where I wrote:

“When my daughter was diagnosed with autism, my fear of  institutions was the one fear, outstripped by any other, that brought me to my knees.  For years it was this vision, that horrifying gothic institution, dark and forbidding that I became convinced would be the inevitable conclusion of not my life, but hers once my husband and I died.  It was this looming image in my mind that made me hurl myself headlong into various remedies and treatments.  For years I felt sure that anything we could do to save her from such a bleak future was surely a worthy goal.  It just never occurred to me that what I thought was inevitable was not. And this is where I thank my Autistic friends for courageously sharing their stories with the world.  Because of them, their lives, their stories, I no longer believe this is my daughter’s inevitable future.”

Richard and I live a very different life than we did just three years ago and it is all because we stopped being afraid.  If you think, even for a second that we stopped finding ways to support our daughter, encourage her, cheer her on to be all she can be, then I encourage you to read the last six months of this blog. These last six months, specifically, show how Emma has increasingly taken over this blog, just as I once did not dare dream possible.  It is her voice that sings out, every day a bit louder, every day more powerfully, every day…

A few more posts on Fear:

The Impact of Fearing Autism
Where Fear Leads Us
How My Fears Drove Me to Pursue a Cure
Murder, Fear and Hope

Love Not Fear.  Tomorrow is the Love not Fear Flashblog.

For submissions email:  info@boycottautismspeaks.com

Love.  Just a whole lot of LOVE!  Emma's Halloween Costume ~ The Love Monster

Love. Just a whole lot of LOVE! Emma’s Halloween Costume ~ The Love Monster