Wading into the world takes achingly long when comparing the expectation with the reality. Vibrant expectations swirl and dance a tempting flurry of ease and take no time to build the skills needed in real life. Disappointment embraces ecstatic expectation when stories walk along a more difficult path. Finding the wonder and natural tempo in working to achieve shimmers and eventually outlasts fleeting expectation.
Posted in Autism, autistic, body/mind disconnect
Tagged Autism, autistic, challenges, communication, comparing, difficulty, expectation, expectations, life, poetry, reality, skill building, typing to communicate
Needing time to learn, understanding concepts and refining techniques are all done on separate timelines. Best to approach each with curiosity and patience, with a large dose of belief in the other person.
Ticking clocks of expectation become toxic. Learning to believe is the homework for all educators. Belief in another’s humanity, respecting different learning styles and compassion for all makes a great teacher and student.
Having a wonderful teacher is life changing.
Posted in autistic, presume competence, RPM
Tagged Autism, believe, Education, Educators, expectations, learning, Patience, teachers, teaching, unreliable speaker
Yesterday there was some discussion about accepting and rejecting social rules. Asked to talk about the rules she would reject, Emma wrote four that she would prefer were not required and expected of her. When we returned to our hotel we discussed this further and Emma slightly amended what she’d written and added one to the list she’d made during her morning session. I’m guessing there are additions to this list, but these sessions are exhausting and I didn’t want to push for more.
1. “Giving eye contact when I don’t want to.”
2. “Being expected to answer verbally.”
3. “Being happy when I don’t feel up to it.”
4. “Keeping my body still”
5. “Trying to be Temple Grandin”
When Emma wrote “being happy when I don’t feel up to it” Soma asked, “do you feel social pressure to be happy?” Emma wrote, “Don’t you?”
So here’s my question to all of you… if you could change a societal expectation, what would it be?
Oh, and this is the eagle Emma drew after her last session…
Emma’s Eagle ~ January 29th, 2014
Posted in Autism, RPM, Soma Mukhopadhyay
Tagged Autism, autistic, communication, expectations, Eye contact, happiness, keeping still, Parenting, Rapid Prompting Method, RPM, social rules, society, Soma Mukhopadhyay, speaking, Temple Grandin
Someone asked Emma what she’d recommend they say in answer to the question, “how high functioning is your child?”
Emma wrote, “I recommend being patient with them and saying that functioning labels will almost always give the wrong idea to those who are trying to understand.”
I have thought about Emma’s response a great deal since she wrote it and asked her if it would be okay to write a bit more about this, specifically in relation to some of the issues Emma confronts on a daily basis. Emma gave me permission.
“Red car, red truck, red car, red car, red car, red truck, red backpack, red car, red car, red car, red car, red truck, red van, red car…” Emma said as we drove to the airport yesterday.
It is inaccurate to say Emma does not speak. She does speak and her words are accurate in that we did pass all of those things in exactly the order she listed. In fact, a few times when I protested because I did not see a red car pass us, after Emma said, “red car,” Emma will correct me and point to a parking lot father away that I had not noticed, where there was a red car. If there is one thing I have come to understand, it is that my daughter is never wrong about such things. If she says, “red sweater” it is not a fantasy, it is because she just saw someone wearing a red sweater, even if I didn’t see them or notice.
Emma has never lined up toys, but she lines up words. To those of us new to all of this, it can seem strange, even bizarre, but it is her way of taking care of herself and is calming to her, please read more about Emma’s thoughts on self-care ‘here‘. However to people who do not know Emma, they listen to her, try to engage her in conversation and then make assumptions about her intelligence based upon the list of words she utters. If they try to engage in a conversation about the red car we just passed, Emma will typically ignore them and continue with her list.
When it comes to “functioning” labels, people who try to have a conversation with Emma will, typically, come to the conclusion she is “moderately” or “severely” autistic. People take this to mean she is “low” functioning. But if someone reads a post, like this ‘one’ that Emma wrote, pointing to one letter at a time on her stencil board, they may assume she is “high functioning” or they may come to some other conclusion, but they will not assume she is “severe”.
Until we were able to help Emma tell us what she was thinking, we had no idea what she was capable of. A little over a year ago her school sent home “reading comprehension” work. Emma was unable to do any of it. At the time we tried a number of different things, but still Emma was unable to answer the questions as they were written and it was assumed she did not understand the simple story given to her. We had no idea how completely wrong we were in our assumptions. It was the same with the ongoing insistence that she read out loud and that when she could not, this also then meant that she was unable to read silently or at all.
The same thing happened with simple addition and subtraction. It was assumed Emma could not do the math sheets being given, meanwhile she not only knew addition and subtraction, but knew multiplication and division, despite having never been formally taught either one. These assumptions were repeated when it came to telling time and the concept of money or what a penny, nickel, dime or quarter were worth. At her IEP meetings it was assumed these “concepts” were too abstract and difficult for her to comprehend. None of us had any idea just how wrong we were.
I wrote about some of this ‘here‘ and ‘here‘. Now, just over a year later I re-read those older posts and am so grateful we know better. Knowing better has changed everything, but had someone told me just over a year ago that Emma would be writing the insightful, wise and incredibly philosophical posts for this blog that she has been recently, I would have been incredulous. As I’ve said before, this is much more an example of my neurological limitations than it is of anything else.
“I recommend being patient with them and saying that functioning labels will almost always give the wrong idea to those who are trying to understand.”
Thank you Emma for being patient with us!
“Red Dress”
Posted in Autism, communication, functioning labels
Tagged assumptions, Autism, autistic, expectations, functioning labels, high functioning, low functioning, mild, moderate, non-speaking, Parenting, severe, Stimming, verbal stims
Presuming competence is not code for – my kid is a genius and capable of super human abilities. (Though some may be, it’s not a given.) One of the things I continue to struggle with is the idea of presuming competence. Often I don’t go far enough and other times I go too far without meaning to. I have made assumptions about my daughter’s ability or inability that are incorrect, or at least have been incorrect in that moment. Whether I expect her to be able to do something that she cannot, or at least cannot do today, but may well be able to do at some point in the future or whether I do not expect her to do something that, it turns out, she is more than capable of, I am treating her as though I know one way or the other. But the truth is, I don’t know and neither do a great many of the people who come into contact with her.
The best thing I know to do is to remain in the moment with an open mind. Easy, right? Yet I don’t think it’s easy at all. I find staying present very, very difficult, which is why in Buddhism they call it a “practice”. It takes practice to stay in the present. It takes practice to remain solidly rooted in this moment without drifting off into some future scenario of what might happen, what should happen, what I want to have happen, what I fear will happen and then all the things I do to control all of that so everything I want will occur the way I want it to, in the time frame I want. I’m exhausted just writing about this!
My daughter continues to astonish and amaze, just as my son does. As both my children mature and come into their own, they do and say things on a daily basis that I find utterly delightful and incredible. But that delight is tempered by expectations. I know this, yet find it extremely difficult to keep my expectations in check. My expectations often cause disappointment. I don’t like feeling disappointed, so I try to turn the volume down on my expectations, but if I keep my expectations in check then am I still presuming competence? I can go around and around with all of this endlessly. The only conclusion I have come to is that I’m not going to always get it right, but I’m going to do my best to stay aware, stay present and open to whatever happens without preconceived ideas of what should or shouldn’t happen and while I’m doing all of that, I’m going to remember to breathe.
Breathing is good.
A wild mushroom growing out of the side of a makeshift bridge – Colorado August, 2013
Posted in Autism, Parenting, presume competence
Tagged buddhism, expectations, Parenting, Philosophy, presuming competence, staying present
I am reading Anne of Green Gables to Emma. Three years ago it would not have occurred to me to read her a book that I might have enjoyed at her age. Three years ago I was “reading” picture books to her before bed. Three years ago I did not assume she understood the stories in those picture books. Three years ago I not only did not assume my then eight year old child understood what I read, but I also did not assume she understood 90% of what was being said to her. Because I did not assume she understood I treated her as though she couldn’t understand. I treated her as though what I thought was a fact. Then I learned I was wrong. Not only did I learn my assumptions were incorrect, I began to see how those assumptions caused me to act and treat her as less capable than she actually was. I treated her as though she couldn’t and I didn’t see how this attitude was hurting her. Instead of teaching her to do things for herself, I did them for her. It was quicker, easier…
I wrote a post not long ago ~ Presume Competence, What does that mean exactly? People have a tough time with the idea of presuming competence, let alone putting that idea into action. I get that. I did too. Here was a child, my child, a child we had been told was capable of this, but not of that, a child who was treated by society as much younger than she actually was, a child who, because of her unreliable language did not have conversations with us, did not answer most of our questions, never asked us questions, and so we assumed had little if any interest in such things. We made the mistake of assuming language retrieval issues were indicative of lack of intent and desire. We made the mistake of limiting our thinking and therefore limited our child. We thought we knew, until we didn’t. We behaved as though what we thought was true and our behavior and actions or inactions fed into that erroneous thinking.
I’ve spoken a great deal about the brilliant documentary by Gerardine Wurzburg, Wretches and Jabberers. I continue to urge everyone I know to watch it because it is the best illustration I know of, that explains the concept of presuming competence and what can happen as a direct result of doing so. It is a highly entertaining, moving documentary following two (mostly) non-speaking Autistic men as they travel the world meeting other non-speaking Autistic people who are all far more capable than society believes. Many are in “life skills” programs or work initiatives doing menial tasks like paper shredding and folding towels. They type about their mind numbing boredom and brutal frustration they feel as a result of being treated as far less intelligent than they are.
Presuming competence is an act, it isn’t just an idea. Presuming competence is the single most powerful action we have taken that has directly helped our daughter flourish and grow. Nothing, absolutely nothing else we’ve done has helped Emma as much as presuming competence. When we stopped limiting her with our limited beliefs of what she is or isn’t capable of and began giving her the information and materials she needed, she has taken off. In school she is being taught grade level science, at home she is being taught grade level geography, I am reading age level fiction and nonfiction, she clears her own dishes, cleans them and puts them away. She sorts her own laundry, helps fold it and knows how to make pancakes without assistance. She takes a shower on her own, has learned to shampoo her hair and brush it afterwards. She brushes and flosses her own teeth with minimal support, she dresses herself. When it is clear she needs help learning to do something, we help her, without admonishment, without distress, but instead with the knowledge that she will eventually learn to do it on her own.
Presuming competence does not mean we expect her to know how to do something without support and instruction, it means we assume she can and will learn with appropriate accommodation. This is is a very different way of thinking than either assuming she can’t do something and never teaching her, or teaching her, but requiring her to prove her knowledge over and over before moving on. With reading comprehension we realized we were asking the wrong questions. Often we were asking her to answer questions that were not obvious to the story. When she couldn’t answer, we’d dumb down the reading material and then wonder why she wouldn’t pay attention.
In the beginning, presuming competence felt like a leap of faith. It scared me. I didn’t want to get my hopes up. I didn’t want to feel the disappointment that I knew I’d feel if I was wrong. It felt like a massive disconnect. But presuming competence is not about my ego, my expectations or anything else involving me. Presuming competence is about respecting my daughter and respecting her process. It is about honoring her. It is about giving her what she needs to flourish. It is about dispensing with what I think, believe and have been told. Presuming competence has nothing to do with my fears of success or failure. Presuming competence is not about me at all. It is all about my daughter.
Emma takes the stages with Pascal, Tracy Thresher and Harvey
I’m impatient. I know this about myself. Impatience serves me to do a great many things. It propels me to take action rather than not. It makes me push harder, try harder. My impatience, which usually begins with tremendous optimism can descend rapidly into disappointment and discouragement. Fortunately I am also fiercely determined and dogged in my reluctance to give up which helps mitigate some of my impatience or maybe it just makes me confused. 😕
However, there are a great many things that are not helped by impatience, things like learning a language, learning to type or learning almost any new skill. These are things that take time, practice and patience. So I have to recognize this and continue despite my impatience. This comes up over and over as I work with my daughter. But in working with her, I’ve also come to recognize something else and that is my expectations. Huge expectations, coupled with impatience can do harm. I see that. I’ve been very aware of how it affects me, but how does it affect Em?
I am learning how to support Em in her communication. For example we will read a story together, such as a book Emma chose recently entitled, Who Pooped in the Park? The story details a family outing where the two kids are upset when they don’t see a great many wild animals on their hike, but learn to identify what animals live in the area by the markings they leave. During our session together I asked Em, “What were some of the animals the family identified? One animal starts with the letter b.” Emma then typed, “There was a bear and ciyoty and a deer.” Other than misspelling coyote, this was a terrific answer and correct. We went on to discuss another name for animal poop, which is scat and that all living things produce “waste” of some kind. After our session was over, Richard asked, “So how did it go?”
“It was fine,” I answered.
“It sounded great!” Richard said with enthusiasm.
“Yeah, I guess,” I replied. And then I had a tiny flicker of realization. I was feeling disappointed in our session. I was hoping for some brilliant, philosophical insight. I was hoping that we would have a conversation that blew my mind and when I realized that, I also realized that my desire, my expectations, my impatience had caused me to not fully take in how terrific our session had been. It also made me see how my response may have felt to Emma. Here she was working hard, doing something that does not come easily and doing it really, really well, yet I had not responded with the kind of unbridled enthusiasm I would have hoped for had our roles been reversed.
During our next session we talked about her birthday, which she is very excited about, and the party and various events we’ve planned for her. I tried hard to be aware of my response to what she was typing. I became increasingly aware of my expectations as they arose and did my best to silently acknowledge them before responding with genuine enthusiasm and appreciation for Em’s work. As a result our session was more fun for both of us. Later when I spoke to a friend about all of this he pointed out that most communication is not wildly brilliant, philosophical or even necessarily enlightening. And of course, he’s right. The majority of our communication with one another is about pretty basic stuff. Learning how to communicate basic things is relevant and important. But my impatience and expectations make me forget that.
I have learned over the years that if I want to change a behavior I need to have awareness that I’m doing whatever it is, I then need to have some degree of acceptance that I’m doing it before I can begin to make little changes to it. Those little changes repeated and added up can, over time, create bigger changes. Admitting aloud I am doing whatever it is can be very helpful as well. Without taking these steps however, I have no hope of changing the way I do something.
There’s a great deal of talk about autism and how our children and autistic adults need to work on a whole range of things, but there isn’t a great deal of conversation in the general population about our own neurological deficiencies. It seems to me that if we are going to continue to have this ongoing discussion of deficits, it’s only fair that we begin to detail our own as well. Now that’s a conversation I look forward to having. And while we’re at it, let’s include the positive aspects of Autistic neurology as well, because a little balance is a good thing!
Posted in Autism, Parenting, supported typing
Tagged autism spectrum, communication, expectations, Neurology, Parenting, Patience, supported typing
Emma's Hope Book 