I have a piece of writing to share.
When your eyes are drawn to a mirror, what do you see?
Is it familiar or unfamiliar?
Do you like what you see?
There may be a struggle with recognition. Stay with it.
Imagine something beautiful.
Make yourself smile and hold it.
Recite a favorite story or joke. This can be done in silence or in speaking.
Repeat your name however you would like to.
Do you like what you see?
The End ~ By Emma Zurcher-Long
Mirror, Mirror, What do you See?
Posted in Autism, Autism Acceptance, autistic, self-advocacy
Tagged autistic, Beauty, communication, concepts of beauty, RPM, self acceptance, unreliable speaker
Outside looking in on a world with a different reality.
There is room for all.
Benign feelings contradict human thoughts about survival.
We treat others with care and feel the joy that comes with that. We treat others harshly and then pain is felt by both.
Problems arise when people take pleasure in other’s pain. Words cause joy, but also can cause pain.
Better to sing and dance!
This is what Emma wrote this morning in answer to my question, “What do you want to blog about this morning?”
We have been studying gene mutation, evolution, Darwin and how species adapt to their environment. We have also just finished reading Romeo and Juliet. I see the influence of all of these topics as well as Emma’s own unique and exquisitely compassionate take on this world and life.
Emma’s Bowl made in ceramics with cookie cutters and then painted.
“Both of us writing this post is fine. We are working together,” Emma typed just now.
But first a short explanation is needed: Twice a week Emma has an in person typed “chat” with her friend, Joey. Yesterday’s chat was a little different because the person Joey usually writes with on Mondays was ill, so I asked Joey if he’d be okay with me holding the keyboard for both him and Emma. He gave me the go-ahead and so I alternated between them, each taking a turn to type.
During their chat, Emma did what she often does, which is talk out loud. Often she will talk about things that happened in the past, as in, “Maddy needs to sit down. Maddy wasn’t nice to Emma” or it can be about the future as in, “chat with Joey, get groceries, German, Math, Skype call with Granma, see Daddy, have dinner, sleep, wake-up, Skype call with Dr. C….” Emma wrote, “When my brain gets busy it remembers things that have been said to me or what I have heard.” I wrote about this recently – Scripts – A Communication Bridge
As Emma and Joey typed with each other, Emma said aloud her nickname for Joey – JoeyAllison. This is a nickname Emma came up with a few months ago when Joey unexpectedly appeared in the same place that someone named Allison had been, the last time we were in the building.
What follows is their chat, which they both agreed to share on this blog (I added punctuation to clarify with Emma’s approval):
J: I begin this, you go next, not Monday schedule threw me.
(J. has a daily schedule and his and Emma’s “chat” wasn’t listed for Monday.)
E: How was your thanksgiving?
J: Good food I like, how about yours?
E: Thanksgiving in two parts is the best way to celebrate holiday of gratitude.
(Emma kept saying out loud “JoeyAllison”)
J: Liking nickname not much, but tolerating since hoping you will find another more likable.
E: Joeyallison is etched into my brain, so hard to overwrite, but I will try.
J: Knowing you make an effort helps, thanks.
E: I don’t mean to hurt your feelings. It’s meant in friendship.
Later Joey’s mom told me Joey’s middle name, which is oddly similar to the name Emma has taken to calling him. I told Emma what his middle name was and she said it out loud several times, as though she were trying it out and then said, “good.” Then she typed, “I will call Joey by his first and middle name to his face, if my mouth obeys, because he’s my friend while secretly saying JoeyAllison to myself.”
There were few things that led us more astray than the idea of autism being a developmental delay. Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan. (This post is not about Stanley Greenspan or his method. His name is brought up only because of the video that inspired this post.)
Watching that video last night was brutal. The private hell of regret is a cruel place to linger. Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.” In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell. Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood. Because people assumed she spoke what she intended and meant, she was penalized for the words she managed to utter. “Do you want to go fast or slow?” “Do you want to stop or go?” “Do you want to open the door or close it?”
Again and again the video shows us making assumptions about her actions. We assume she has no interest in engaging. We assume she doesn’t want to spend time with us. We assume she is “in her own world.” We make assumptions and we behave according to those mistaken beliefs. We believed each word was a milestone, paving the way for more language acquisition. We believed it made sense. Lay the foundation, create a strong base of words for more to follow… Use your words, use your words, use your words…
The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed. This idea of a developmental delay bled into every single aspect of her being. It was believed that her speech was delayed, as were her fine and gross motor skills. Therapies were structured around this concept. All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six? At the time we didn’t question any of this. Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.
As it was, we did not know. We listened to the many professionals we consulted. Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter. It never once occurred to me that maybe, just maybe what she said was not what she intended to say. It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider. We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma. Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing. Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:
“Rethinking Your Beliefs About Autism”
When the Body Does not Obey the Mind
Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004. The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between. It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else. One day I hope the professionals parents are introduced to will be Autistic professionals.
My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”
Cynthia Kim, author of Nerdy, Shy and Socially Inappropriate , I Think I Might be Autistic, the blog Musings of An Aspie and owner of StimTastic said, “That waiting to catch up feeling is so insidious and one that I subconsciously lived with for a long time.”
My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”
Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”
So what are the consequences of believing autism is a developmental delay?
Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal). It meant pursuing all kinds of therapies that never questioned the push for spoken language. It meant not considering AAC devices, because she “had language.” It meant encouraging my daughter to “use your words.” It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught. It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.
There are so many things Emma can do, that I cannot. Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it. My daughter amazes me every, single day. As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!
Emma – 2006
Posted in Autism, developmental delay, Parenting
Tagged assumptions, autistic, body/mind, body/mind disconnect, communication, Cynthia Kim, Ibby Grace, Neurology, non-fluent speaker, non-speaking, presume competence, regret, spoken language, Stanley Greenspan, Typing, uncooperative body, Use your words
Something happened yesterday that was hugely helpful and gave me some staggering new insights. I’m hoping this might be helpful to others as well… The details do not matter, so don’t get caught up in them.
Em and I do the same thing every Wednesday morning, we go visit B. whom Emma loves and also types with. But this time someone else asked to join us and when I asked Emma what she thought, she said out loud, “Yes!” She said it with a great deal of enthusiasm, as though she liked the idea. However I have learned to always verify any spoken words with some other type of confirmation so I held my two index fingers up and said, while indicating the left one, “Yes” or, and then indicated the right finger “no”. Emma repeated “Yes!” and pointed to my left finger. Satisfied, we joined the third person and made our way up the street.
A few blocks from our destination, Emma began saying out loud, “City tree house.” This is a place for small children and it has been the cause of a great deal of anxiety. I could see, by both the expression on her face and her tone that she was becoming increasingly upset. By the time we arrived at B.’s Emma was really worried, anxious and very unhappy. I was doing my best to talk to her about city tree house and how it is one of those places that caters to very small children when Emma sat down next to B and typed, “You did not listen to my words last time.” I, thinking she was referring to another conversation we’d had the week before asked if she was referring to that conversation, but she said she wasn’t. She said that she did not want this other person, who was now sitting in the room, there. The person said not to worry and immediately got up and left the room
After they left I said, “But I asked you before we left Emma, so I’m confused,” Emma then wrote, “If anxiety rises after choices are made then it may be inaccurate.”
What followed was an incredible conversation about how a decision can be made only to realize that it is the wrong one. When this happens, go to scripts that are based in memories of anxiety begin. As we talked I suddenly remembered a conversation I had several years ago with my friend Ibby. This was a time before Emma was typing with us and I was asking Ibby for her thoughts about some of the things Emma would say out loud that I found baffling. Ibby told me that I mustn’t try to do a word for word translation, but needed to feel the emotion behind the words and try to understand the context that way. I remember being utterly confused by Ibby’s explanation and suggestion, but now, today, I get it, in a way I have not understood until now.
I asked Emma to verify all of this before writing about it and she affirmed that I am understanding it correctly. In the past I would have gotten all tangled up in the specifics of what she was saying. I would have sought to reassure her about whatever it was. But now, I understand that these scripts can serve as so much more. They can serve another purpose. They are less about the words spoken and more about the emotions that are attached to them. So when Em is happy she will often speak of some of her favorite people. She might reference something that happened more than eight years ago, but that made her feel safe, or a specific time when she was really happy. I’ve always thought these memories were nothing more than that. Memories she enjoyed voicing out loud, but nothing more. But now. Now, from what she typed, I understand that they are much, much more than random memories. They are a kind of communication bridge. A way of saying, I’m happy! Or I’m feeling really sad, or this is causing me terrible anxiety, but it’s more than just a vague statement about a feeling, it’s actually a brilliant way of trying to convey much more. It’s a way to communicate a whole series of feelings.
The more I think about the conversation we had, the more I feel I am understanding. Those scripts are like flashbacks in a movie. They give us a tremendous amount of information and are symbolic of so much.
Emma ~ 2012
Cynthia Kim of Musings of an Aspie wrote about scripting too – Echolalia and Scripting: Straddling the Border of Functional Language (funnily enough Cynthia and I have done this before, written about the exact same topic on the same day!)
When I first heard the words “presume competence” I had no idea what that meant. I cobbled together some ideas of what I’d read and thought it meant and did my best to put them into action. I did a great deal of “acting as if” and reminded myself, when my daughter wandered off in the middle of my explaining something to her, to keep talking anyway. When she didn’t seem to look at whatever it was I was showing her I pretended that I knew she was taking it all in. I pretended I believed, even when I didn’t. And when my energy was depleted I would not place demands on either of us. If I wasn’t able to take actions that were centered in presuming competence then I tried not to take any actions at all.
In the beginning the best I could do to show a presumption of competence was to read age appropriate books to her. This was when Emma was eight years old. I still remember the first book I read that wasn’t considered “young” for her age. It was a biography of Balto, the Siberian Husky who raced through a blizzard in whiteout conditions delivering a much needed serum saving countless people sick with diphtheria in Alaska. After Balto, I read a biography of Helen Keller specifically for children and then, because Emma seemed to enjoy it so much, we read the autobiography of Helen Keller, all the Mary Poppins books, followed by The Wizard of Oz, Alice in Wonderland, The Secret Garden, The Tale of Despereaux, Winn Dixie, Bridge to Terabithia, Little Women and on and on we went.
At first I was unsure whether she was even listening, let alone enjoying any of these books. But one night as she settled into bed, and when I didn’t pull out a book, Emma sat up and said very clearly and distinctly, “Helen Keller.” Emma was not typing yet, so I wasn’t completely sure she really wanted me to read Helen Keller or if she was just saying the name because it was what I’d been reading. I distinctly remember questioning whether she really wanted me to read the book because it interested her or because this was just part of an established routine and then I had a moment of guilt for doubting her.
As I said, Emma wasn’t typing yet, so there was little we could point to that backed up our decision to presume competence. There was no “evidence” to suggest what we were doing had anything to do with anything other than a hope and a wish. As presuming competence is not typically done in the general population or at any of the schools she went to, we were definitely doing things differently. There were times when I doubted what we were doing. There were times I didn’t believe. There were times I wondered – what if we’re wrong about all of this. What if what everyone says is true, really is? What if? What if?
In the end I just kept coming back to the thought that presuming competence harmed no one, but to not presume competence and to be wrong would do tremendous damage. As time went on and it became clear just how many mistakes we had made, I became more determined than ever to err on the side of support, encouragement and believing in her rather than the other way around. It is strange that the focus is so often on all that is challenging, rather than encouraging all that is not. Often that thought was the only thought that kept me moving forward. Sometimes one idea, just a single idea is all it takes.
To presume competence became a living amends and a way of life. At the very least it is something I can do that is not going to add another item to that lengthy list of mistakes made.
Emma and Balto ~ 2010
Four mornings a week Emma begins the day with a Skype call with a professor in New England who is a bio-chemist. We call him Dr. C on this blog. They have a close relationship and their conversations flow easily between them. I am very much the observer most of the time.
This is a sample of one of their more typical exchanges:
Dr. C: So if water were linear and not bent what effect would this have on life on Earth?
Emma: Hydrogen would not be able to find connections to create networks, life as we know it could not be.
Dr. C: Right, so there would be no dipole or tiny magnet, thus water would not align with a + or – side….
The session before this one, Dr. C asked Emma, as a homework project, to construct a Benzene (C6H6) model, which Emma then did. It looks like this:
Benzene
The final piece of the homework assignment was to draw the corresponding Lewis Bond Structure. This proved much more difficult and took about five attempts before she drew the structure below. (It is awesome and fabulously impressive!)
Lewis Bond Structure
The Lewis Bond Structure is basically a replica of the actual three-dimensional model, so much so that you can literally place the model on top of it and it will pair up. While making the molecular models of things like water, ammonia, methane and carbon dioxide are now fairly easy for Emma, drawing the Lewis Bond Structures are not and it reminds me of a similar problem that writing, handwriting and to a lesser degree typing presents.
I would love to hear other people’s thoughts on why this might be so, but watching Emma cheerfully putting together these models is absolutely fascinating. And it makes me wonder if this isn’t a key to better understanding how teaching methods might take a page from organic chemistry…
If one thinks in a more three-dimensional way, does it then follow that trying to write, formulate the words to correspond with the thoughts, would present a whole series of challenges? Doesn’t it suggest that this is more than a “word retrieval” issue? I’m wondering if there even IS a word retrieval issue, (I plan to ask Emma later) but instead there’s a spatial issue presenting itself as non word based and therefore very difficult to transcribe.
Thoughts?
I think this has been one of the best days of my life. We had a full day of learning. I’m exhausted. Seriously. I feel as though my head is going to explode. We began the day with our daily Skype call with Dr. C. Emma and Dr. C. had great fun teasing me about the fact that every time Dr. C. asked Emma something like, “How many F- will bind to a single Mg^2=?” Emma typed the correct answer while I looked on with befuddlement. Every so often Dr. C explained something incomprehensible and then asked, “Got it?” Emma immediately typed “Yes!” while I muttered, not so quietly, “NO!” As I was continuously slowing them down with clarifying questions, it was suggested, jokingly, that I put a metal bucket over my head. Emma then typed to Dr. C. “Do you have one?”
As Dr. C. gave Emma increasingly difficult and complex questions, I resigned myself to the fact that I didn’t have a clue what they were going on about, but Emma did, and that filled me with unspeakable joy. There was lots of uproarious laughter and shouts of “Go Emma! You can do this!!” after each question and Emma literally bounced up and down with glee.
Science was followed by a break, then math, a break, American history, a break, creative writing, where Emma wrote the most amazing piece that, sadly, I cannot post because it has been submitted to an anthology. (Any who type to communicate are encouraged to submit. Click the link ‘here‘. I believe the deadline is October 1st.) After Emma cranked out her absolutely mind blowing essay, we did German and then she had her book club with K. where they discussed George Orwell’s Animal Farm and the Russian Revolution. Oh and did I mention Emma did all of this dressed in the most fabulous red gown?
Quick aside – We are so incredibly fortunate to have people in our lives who have enthusiastically and generously volunteered their time to help teach. To those people, a million thanks.
Now it’s time to do nothing. Emma? She’s in the back with Richard watching Seven Wonders of the Universe, I kid you not…
Posted in Autism, Education, Parenting
Tagged animal farm, autistic, communication, Education, history, homeschooling, joy, literacy, Parenting, periodic table, science, typing to communicate, unschooling
Emma does not go to school, instead the world has become an enormous classroom. Here are a few snippets from today…
We began the day with our daily Skype call with Dr. C. who begins each call by asking Emma if she has any questions for him. Today she typed, “Inkling of noted capacity of space is to be reviewed?”
Without missing a beat Dr. C. said, “Recall that the inflationary hypothesis predicts that space is expanding faster than the speed of light, thus it has been theorized that if the entire universe is the size of planet Earth, the part of the universe that we can see with telescopes is about the size of a grain of sand.” Emma replied, “Present state of what we understand, but may be limited by our perceptions.”
“Agreed,” Dr. C said and then added, “This is always the way with scientific advancement. Every day new experiments are being run that either support or repute theories and hypotheses, thus theories are continually changing. It may well be that the inflationary hypothesis will be abandoned and some new theory (maybe the Cyclic Universe Theory) will emerge. That is the way of science, Emma! It continually changes.”
What followed was a brief discussion about Cyclic Universe Theory and then the conversation returned to Units and Equivalents where Emma was asked to view a powerpoint slide showing two graphs showing weekly wages, which upon closer inspection were the same data, but because of the way they were shown, seemed very different. Dr. C asked Emma which one she would prefer getting for a weekly allowance and Emma enthusiastically pointed to the one that appeared to be monetarily favorable. Dr. C then explained why it was not and how this was a good example of how data can be changed, while still being legitimate. Emma then typed, “Deceptively similar. We both need a raise.”
After much laughter, Dr. C. talked about how important it is to study data to be sure you are not being deceived. Emma then typed, “Either one is a manipulation. The facts are easier without ego.”
The lesson ended with a discussion about density and Emma was given a homework question where she will need to calculate the weight of a gold brick. She has been given the dimensions, an equivalency chart to convert inches, centimeters, kilograms and pounds and the density of gold.
After our Skype call we went to see B. Emma was asked, “Do you think you are learning more now that you are NOT in school?”
“My mind is expanding as big as a watermelon that feeds an entire school,” Emma typed.
Interestingly, and as a quick aside, earlier in the week we discussed with Dr. C Hubble’s Law and the idea that the universe may be expanding, so I found her choice of words particularly wonderful.
Later B. described a limerick, briefly talked about iambic pentameter (a limerick is typically AABBA) and gave her the “rules” of most limericks. Limericks are five lines, lines one, two and five rhyme, with lines three and four rhyming with each other, they have a distinctive beat with lines one, two and five being longer than three and four, and they are usually humorous.
B. read the following limerick, the writer is unknown, which is about limericks!
“Writing a Limerick’s absurd,
Line one and line five rhyme in word,
And just as you’ve reckoned
They rhyme with the second;
The fourth line must rhyme with the third.”
B. asked Emma what she thought and this was Emma’s reply:
“Dancing each day is a joy,
It’s better than playing with toys,
If you disagree
Come spend time with me,
It’s fun for both girls and for boys.”
After we returned home Emma and I read the first chapter of George Orwell’s Animal Farm in preparation for Emma’s book club with K. on Friday and went on a field trip to the Museum Of Modern Art. Prior to leaving on her field trip to the museum, she was shown the current exhibits and asked which looked interesting to her. Emma typed, “wandering through possibilities is best.”
I don’t know about you, but I want a T-shirt that says that.
“Wandering through possibilities is best.”
“Wandering through possibilities is best.” ~ Emma Zurcher-Long
Posted in Autism, Parenting, unschooling
Tagged autistic, communication, Education, homeschooling, language, limericks, literacy, math, New York City, non-fluent speaker, presume competence, science, typing to communicate
Yesterday we had an interesting discussion about the word “intention.” The word was brought up innocently enough. It was used in the context of asking about a larger project Emma has been working on. “What does having intention mean to you?” Emma was asked.
“To have intention is a skill. To have intention is a hurdle to jump over,” Emma typed.
I was sitting in the room as this conversation occurred, but was not part of it yet. I was surprised by Emma’s answer. I have never thought of intention as a skill or a hurdle. Instead I’ve always thought of intention as being goal oriented. Then Emma wrote, “the mind does not always process it correctly.”
And I realized I have a very different idea of intention. An idea of what it means to set out to do something and then to do it. I come at the word from the point of view of someone who has not grappled with intention as daunting. I have not experienced the word as a series of frustrations, not typically. Sure every now and then I intend to do something, I set out to do it and find I do not have enough information or am not skilled enough or realize I need to do a whole list of other things first before I can accomplish what I had hoped. But this is different from what Emma was talking about.
“Is intention easier for you while you’re going through it, or later afterward when you are looking back?” Emma was asked.
“If I think too much about it the fear is anxiety,” Emma wrote.
Richard said that what he was hearing Emma say was that the word “intention” means something that we do not necessarily mean. He went on to say that if someone who speaks and says things that they don’t mean a great deal of the time, he could see how “intention” would be anxiety producing.
And as I listened to this exchange I reflected on how I define “intention” from my perspective of relative ease with spoken language. As someone who has never considered intention a “skill,” but instead as a given and even an expectation, one I’ve not spent much time considering, my daughter has once again given me a great deal to think about. This is the very essence of privilege. Having something, being so used to having it that I do not even know I have it… unless it was taken away from me or when someone else reminds me of how much easier it is for me than it is for them.
“To have intention is a hurdle to jump over.”
Posted in Autism, Parenting, Speech
Tagged Anxiety, autistic, communication, conversation, frustration, goals, intent, intention, non-fluent speaker, non-speaking, RPM, typing to communicate
Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of “recovery.” There were a multitude of different diets, the gluten-free/casein free diet and the GAPS diet, that some said had “recovered” their child, making them indistinguishable from their peers. There were the bio-med treatments ranging from daily B-12 shots, hyperbaric chambers, ointments applied topically, vitamin supplements, chelation, homeopathic and naturopathic remedies to stem cell treatments. There were the therapies that made up the center piece of books claiming full recovery and the many doctors and specialists who supported them.
In the beginning we were terrified. I still remember that feeling. The nights of not being able to sleep, staring at the ceiling and worrying only to finally slip into a semi-conscious state of fitful sleep. The next morning, there were often those first 60 seconds upon waking when I’d forget the worries that had kept me up. Then reality would come rushing back and it was like being thrown into a bottomless pit of worry, stress and terror. The fear was relentless and was fueled by just about everyone we came into contact with. Our child was far too young to have predictions made about her future, and yet people made them and all of them except those stories of “recovery” threw me into further fear.
People compared her neurology to cancer or Parkinson’s and likened the various therapies and treatments to chemo; a necessary horror that no one enjoyed, but that must be done. And I believed them. I had to save my child. I would do anything to save my child. Various things were deemed more acceptable than others, but dig deep enough and you can find any number of people, doctors and specialists who swear by whatever it is they believe will transform a child who does not speak, who seems so frustrated and unhappy into a speaking child who is no longer in pain. Had this not been the case, had they not claimed complete “recovery” we would not have subjected our child to any of it, but instead, we tried all of them.
So much of what we were told seemed to coincide with what we were seeing. My daughter could not use spoken language to speak. She seemed to be in almost constant internal discomfort. She cried, gut wrenching screams of pain, regularly. Her sleep was erratic, her behavior confounding, her distress with things I couldn’t understand seemed constant, her inability to communicate what was going on made it all the more confusing. So many of the professionals we took our daughter to seemed convinced that their treatment or remedy or whatever it was would be the thing that changed everything. I desperately wanted her to not be in pain. I desperately wanted her to be able to communicate. I wanted nothing more than to ease her frustration. For years I never thought – perhaps everyone is thinking about all of this wrong.
So on one hand we were introduced to autism as a horrible thing, but that there were people and things that could “treat” it and if we were lucky she could “recover” and on the other hand we were told no one knew what caused it and there was no cure. It is this, seemingly two opposing thoughts, that many parents are introduced to. It is no wonder so many choose to believe the former and not the later, even when, in doing so, we head into a labyrinth from which there is no end. The third idea, that this is a different type of neurology and to compare Autistic neurology with non autistic neurology is detrimental to all involved and to suggest that one neurology can be trained to become a different one is not only an unachievable goal, but an unworthy one, was not introduced to us until much later.
There is nothing quite so awful as to see your child through the lens of those who are seeing nothing but deficiencies, challenges and problems. Assumptions are made about intelligence based on tests used for a different neurology. I often wonder what we would have done had we been introduced to Autistic people who didn’t use spoken language, but who typed to communicate. Would we have been so frantic? I don’t know. What I do know is that rethinking everything we once believed, refusing to submit to the idea that autism is the source of all that is wrong, seeing how non autistic neurology has its own set of deficits and challenges, and finding a way for our daughter to communicate has changed everything. If we spent even a small percentage of the money currently being spent on autism and autism research, on finding better ways to support our non-speaking kids so that they too could communicate using stencil boards, letter boards and typing keyboards, at least some of the panic many parents feel would subside.
2005
“No one knows how to help us.” This was what I once said to my husband. It was many years ago. So many, I no longer remember the year. Along with that realization was this one – “We are in this alone.” And while, at the time, that thought terrified me, it was the beginning of finding another way. It was the moment when I realized all these people we were looking to for guidance, didn’t know what was best for our daughter, even when they believed they did.
In the beginning we were told how fortunate we were, our daughter was “mild” we were told and if we followed their advice – an aggressive implementation of ABA, Speech Therapy and Occupational Therapy – she would be in a regular classroom by the time she entered kindergarten. She was still two years old when she was diagnosed and we knew nothing about autism. We did as we were told. We were assured she would “skyrocket.” We fought to increase the hours of therapy, we went to the team meetings, we took notes, we learned how to “play” with her using ABA’s techniques, we monitored her and kept charts. We filled notebooks with our observations and we waited for her to “skyrocket.”
When she turned three we enrolled her in an ABA based pre-school. By the end of that school year I no longer believed all that I was being told. The therapists were no longer assuring us she would “skyrocket.” Now words like “red flag” were being used to describe her behavior. She had “behaviors” and these were being pinpointed and noted with alarming frequency. We were getting reports of non-compliance, an inability to “use her words” as though she was being defiant and then she began to self-injure. No one understood why. Everyone was baffled.
And now, so many years later, I look back on those years and it all seems so understandable. They say hind sight is 20/20, that looking back we can easily understand that which was once incomprehensible. I understand now. We didn’t appreciate what was going on. We didn’t think we understood our child, and for the most part we didn’t and we kept looking to others to explain her to us. The explanations they gave us, we believed. We thought, since we didn’t understand and they seemed sure that they did, they must be right. It took several more years for me to realize they didn’t and they didn’t know how to help us or her either. When the methods they believed in didn’t do what they believed should and would happen, they blamed us and they blamed her.
Emma continues to remind me that “regret is not needed” and she’s right. I am working hard on that one. I cannot describe someone else’s experience, I can only write about mine. This was mine. As the mother of a daughter who was once believed “mild” and later “moderate” and finally “moderate to severe” on autism’s vast spectrum, we have learned a great deal. And while many may not derive any solace in what I’m about to say, I would have. No one can predict what life holds for your two, three, four, five, six or seven-year old child. No one can predict another’s future, there are too many variables.
That my daughter has some spoken language is, and was, the single biggest red herring for those who meet her. It never occurred to us that all that speech therapy, focusing on spoken language, would ultimately be unhelpful. I knew nothing of AAC (Augmentative and Alternative Communication) devices or methods and as spoken language seemed to me to be the ideal, the idea of her using something else honestly never crossed my mind. Why would I encourage her to use something else to communicate if she could speak? When, after years of speech therapy focusing on spoken language, she still couldn’t have a conversation with us, our answer was to try more, push harder and it would come.
So many people ask what we would have done, knowing all we know now. This is a question that is specific to my daughter, but I know there are other children who are similar as I’ve met so many of them. I would not have waited so long to begin using other forms of communication. In fact, this would have been the thing I would have concentrated on right away. There is no evidence that using an AAC device will have a negative effect on spoken language acquisition, in fact there are studies showing the opposite is likely to be true. Had my daughter been able to communicate at an earlier age, many things would have changed. The most important one being that we would have understood much earlier all that she knew and understood. This may strike some as a little thing, but I can assure you, had we realized this early on, had we believed this right away, it would have changed every single decision we then made. Not to mention the massive reduction in our stress, anxiety and fear.
There is so much we are learning and still have to learn, but we are no longer alone. We are surrounded by other parents, professionals, educators and, most importantly, people who share our daughter’s neurology, those who are Autistic and who continue to share their experiences with us so that we might better parent our Autistic daughter. And of course, our daughter, Emma whose patience, love, wisdom and endless compassion is teaching us more than any.
One year after the diagnosis
Posted in ABA, Autism, Parenting
Tagged AAC, Autism, autism experts, autistic, communication, communication methods, diagnosis, fear, high functioning, language, low functioning, mild autism, moderate autism, non-speaking, Parenting, severe autism, Stress, worry, writing
A friend of ours sent us a link to a short piece about stuttering and singing as something that has proven helpful for some. After Emma and I read the piece I asked Emma what she thought. Emma wrote, “Singing is the only time words come easily.”
When Emma was very young many of her therapists would sing various songs to her, but usually repeated the same ones, “Head, shoulders, knees and toes” and “The wheels on the bus” being the two that feature most prominently in my memory of that period. I was curious about Emma’s memory about those songs and so asked her.
“The mistake people made was in not using music more. Music was more beneficial than anything else,” Emma wrote.
“Even though you couldn’t articulate the few words you spoke back then, I’m talking about when you were just two and three years old, you loved singing and sang a lot. Did you understand the meaning of the words of the songs you would sing?” I asked.
Emma wrote, “Yes.”
Did you purposefully choose songs that communicated what you were feeling?
“Music conveyed my feelings more than anything else. I might feel something that no words can describe. Music is the language of the soul,” Emma wrote.
Yesterday Richard, Emma and I were discussing consciousness, thinking and different ways of communicating our thoughts. Emma wrote, “Can you think about how I sense the world and then try not to use words? My pacifist’s stance is the only way. Fighting requires words, pacifism does not.”
Richard then asked, “Are you saying that from your perspective you see all intelligence as being linked and one, and we, who use words, fight because we cannot see and understand this?”
Emma wrote, “You are trying to define knowledge and intelligence with inadequate words. Intelligence is not word based. Music and words used in song come closest.”
Summer – 2009
Posted in Autism, communication, Parenting
Tagged autistic, communication, consciousness, Head, knees and toes, language, music, music therapy, non-speaking, pacifism, shoulders, singing, stuttering, word retrieval
“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience. Those families are in an ongoing battle.”
The above is a version of a comment I’ve read countless times over the years.
Aside from the curious conflation of the first part of the sentence discussing Autistic people’s sense of themselves, to the last part, which discusses the family’s point of view, as though the “low functioning” individual is incapable of having a point of view, there is no point arguing with anyone about their lived experience. However, do not make your experience mine. This is NOT my experience of my child. This is NOT my family’s experience. This is not the experience of many, many families I know. And do not assume this is my daughter’s experience either. Just because this is the way you view your child or sibling or relative or the person you know, does not mean that is their experience of the world or their family member’s experience.
I do not assume that because I choose to celebrate my daughter, every family and every Autistic person will agree or feel the same. Nothing is as simple as any one-word descriptor. The ongoing battle I find myself in is with the inaccurate information about autism and Autistic people. The ongoing battle is not my daughter’s neurology, it’s the misperceptions people have that they then apply to my daughter. The ongoing battle is not about her at all, it’s about functioning labels, what people continue to say and believe autism means, how people view disability, the stigma attached and how people fear, reject and punish what they do not understand.
That quote? That is exactly what I am battling – the idea that because someone cannot use spoken language, they do not have an experience of the world, the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy, and therefore excluded. Exclusion is the battle. Non-acceptance is the battle. Intolerance is the battle. Hatred is the battle. Prejudice is the battle. Discrimination is the battle. Misinformation, inequality, superiority, arrogance, ignorance, and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon, that’s the battle.
Emma’s story, which she edited slightly from the original:
There were three boxes that were left on three different doorsteps. They appeared to be identical in physicality. The size, shape, and color made them far from unique. The way they each arrived is still unknown. Assuming they are identical on the inside would be ignorant.
When the people opened their doors and saw the boxes left, their reactions varied. One questioned why there were no markings on the box. The other tripped over the box when leaving, but did not pay it more attention right then. The third opened it immediately since she loved getting mail.
Inside the boxes were lives – a kitten, a puppy, and a baby. We will never know who abandoned these precious lives. The focus is on how these lives adapt to new environments. The easy answer is not that easy. The longer version is that once the boxes were opened – the kitten quickly scampered out, easily scaling the box’s cardboard sides, the puppy tried to get out, but the box was too deep and he was too little, so he looked around for help, and the baby lay there, too young to even roll over and simply cried.
Luckily the enthusiastic mail-lover became the baby’s new mother.
That is food for thought.
The End
The box with the kitten
Emma's Hope Book 