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
The following is a conversation Emma, Richard and I had with a friend of ours who works at a school. (DF = dear friend) I have paraphrased DF’s part of the conversation because a) I cannot type as quickly as she speaks and b) she was thinking out loud at certain points, so I just wrote the gist of what she was saying. All of Emma’s words are what she typed. Both DF and Emma gave permission to have their words posted here. As Emma wrote – “People need to understand.”
DF: I’ve been thinking about your presentation (click ‘here‘ to watch Emma’s presentation) and the body/mind disconnect that you talked about during your presentation last week. I was thinking about being respectful and making faces back at you and I know you’re smart, but I was afraid that if you can’t control your body and don’t mean to make faces, is it disrespectful to make faces back?
Emma: Making faces is fun communication in my chosen language.
DF: Is it also the same for the words you sometimes use? So, if you’re saying a word like “peacock”, is it respectful to repeat it back and play with words that way?
Emma: Playing in all ways is my favored way of interacting with people even when they don’t speak silly.
DF: Sometimes I feel bad because I want to ask you questions because I want to know you better, but I don’t want to ask because I know how hard work it is for you to answer.
Emma: Talkers always want words, as though everyone stated exactly what they meant.
Richard & Ariane: (we both asked similar questions, but in different ways, this is a combined version of what we asked) Emma, I’m curious… when you say “peacock” sometimes you are singing in an operatic voice, but other times you are saying the word over and over while also saying “peek-a-boo” so I’m wondering are you mimicking the bird or are you playing around with the words, “peek-a-boo”?
Instead of pointing to the “y” or “n” for yes or no, Emma pointed to the letter, “w”. This led to a quick back and forth between us, talkers, about how Emma rarely just answers yes or no when given the opportunity to, but instead writes much more. I even then joked to Emma, “Em, that was a yes or no question. You can just hit “y” for yes or “n” for no!”
Emma: Word play is joyful and I think obvious joy is had with both associations. Decision to sing while thinking about birds with peek-a-boo tail feathers brings happy feelings.
Ariane: Oh my gosh, Emma! That’s so amazing. The tail feathers look like hundreds of eyes and they are only fanned out at particular times! So this wasn’t a yes or no question after all!
We then discussed peacocks, their beautiful plumage and how we often thought we were asking a yes or no question, only to realize how wrong this assumption is.
DF: Okay, so here’s a problem that many teachers have at school. A lot of times kids your age or older have fascinations with things that talkers think are inappropriate. Things like a teenager who likes Teletubbies or wants to carry around a stuffed animal or wants to talk about Thomas the Tank Engine. We want to be respectful and treat that kid like a mature teenager, but we don’t feel comfortable talking about Teletubbies or Thomas the Tank Engine.
Emma: This is their fear of indulging a mind that they suspect is simple, but someone who is known to be brilliant would be thought eccentric.
DF: Should I defend their right to explore their interest in school?
Emma: Yes, expressions are not threatening and harm none.
*Quick aside – using interests as the gateway to other academics is how many homeschool/unschool .
Richard: In the past, while watching you type, you’ve made faces at me and I’ve made faces back and was told not to do that. But I’ve seen you making faces and you still are able to type, should we feel free to make faces with you while you’re typing?
Emma: This is a difficult answer because I prefer to make faces, but I know how much you want to talk.
R: What I meant was, do you enjoy having someone make faces back while you’re typing or would you prefer they did not?
E: I would love to just make faces and not type.
*Another quick aside – so this is the ongoing struggle of all parents it seems to me. It’s those grey areas when we ask our children to do something, even when they may not always want to. For us, we put boundaries around typing sessions, so there is a clear beginning, middle and end. As with most parents, we hope our decision is the right one.
Ariane: Talk to me about when you say to guests, “good-bye”. Often you say it shortly after they’ve arrived, sometimes immediately after they’ve finished dinner. You can clear the room in seconds because they think you want them to leave. But do you want them to leave?
Emma: Saying good-bye to some is because I think they need to go, but other times I am sad and say it because I don’t want them to leave.
*Emma then made a sad face and pretended to cry.
Richard: That’s a good face to make when you’re sad that they must go!
DF, Richard and I circled back to DF’s question about students who have interests in things that the non-autistic educators deem not age appropriate.
Emma: It’s hypocritical though, because I was often given very young books, more suited for a toddler.
I asked Emma what image she wanted with this post, she typed, “google – “talking” and then chose this.
Yesterday we had to rent a car (we New Yorkers often do not own cars, one of the many wonderful benefits of living in such a vibrant city!) to go see Soma, who was about an hour outside of the city. (For more about Soma, you can click on her name above, which will take you to her website for the Halo Center. You can also read more that I’ve written by typing either Soma and/or RPM into the search box on this blog.) We thought we’d given ourselves plenty of time by renting the car almost two hours prior to our appointment, but as luck would have it a lane was closed due to an earlier collision and coupled with the ongoing and seemingly never ending road work on all and any highways in and out of Manhattan, we realized we would be lucky if we made our appointment at all.
When we pulled up, Soma was waiting, we were exactly two minutes late(!) so we jumped out of the car and raced in to begin Emma’s session. Emma wrote, “What happens if traffic never gets moving?”
Pause.
“You are stuck in a rut. It’s like autism. When you have the diagnosis you are stuck in stims and cannot proceed where your actions want to be. It is always clogged like a caged mind driving through traffic.”
This morning I asked Emma if we could talk more about this as I’ve not heard her talk about autism and stims in this way before. In fact, Emma has referred to stimming as self-care ‘here‘ and ‘here‘ and I wondered if she’d be willing to talk a bit more about this with me. She wrote that she would. She wrote, “Circular stimming begins in self-care and can aid focussed mind, but samples hasty stress when consumed by the stim.”
“So what I hear you saying is that the stim begins as a way to self-care, but can also become the cause of stress. Is that accurate?” I asked.
“Understand that I cannot always filter all that is going on easily. My string grounds me. Not having it can cause horrible stress, but it can also distract me.”
I asked Emma if there was anything that another person can do that would feel supportive and encouraging, but that might also make that struggle easier.
Emma wrote, “Don’t force me to put it away, but instead gently remind me to stay in the task asked.”
“Is it okay to suggest you hold the string in your left hand or wrap it around one hand so that you’re still free to type?” I asked.
“It is nice to be helped with kind suggestions, not nice to be stripped of any say in what is being done.”
“Okay, I totally get that,” I said. “With Soma you wrote, “What is wrong with the world?” Then you answered your own question by writing, “In fact nothing is wrong with the world. We are the problems. We are not right. We see things and create a problem. I don’t have autism label on my forehead like Soma’s dot.”
(Emma was referring to Soma’s “bindi” the red dot Hindi Indian women often wear. Soma, being Soma, made a joke and did not take offense.) Emma then wrote, “But I have to walk around all my life with this label.”
I asked Emma if she’d talk a bit more about this and asked, “Do you feel if you didn’t have a diagnosis, people would treat you differently?”
“People see me, think she is different, forgetting that I have feelings like they do. If people understood what autism really is, it would not matter, but people don’t, and so it makes life much harder.”
“So it isn’t the label or the word “autism” that bothers you as much as what that seems to mean to so many people?”
Emma wrote, “This is the biggest problem and causes mistreatment and misunderstandings.”
“Thank you so much for clarifying all of this Emma. Do you have anything to say to parents and educators who are trying to understand?”
“Keep your open mind and listen to the people who are Autistic for information about autism,” Emma wrote.
Soma and Emma ~ June 12, 2014
Posted in Autism, communication, diagnosis
Tagged attention, autistic, Educators, focus, New York City, non fluent speakers, non-speaking, Parenting, presume competence, Rapid Prompting Method, RPM, self-care, Soma Mukhopadhyay, Stimming, stims, Stress
In the last two days I have been sent two different graphics supposedly about autism, but that upon reading take my breath away because of their blatant inaccuracies and biases. The last one was in the shape of a pyramid in a shade of blue I’ve come to despise with the heading, “Impairment in Imagination” and I just wanted to cry. Impairment in imagination?
You have no idea how much I wanted to hit the delete button and scream or bite someone, which always reminds me of a scene in the British comedy, Shawn of the Dead where the main character’s mom is bitten by a zombie, but she doesn’t say anything until her son asks, “Mom, are you okay? Did he get you?” And the mother smiles weakly, as blood gushes from her arm and replies, “Well, he was a bit bitey.” Hilarious. Only what I was feeling when I read “Impairment of imagination” was not hilarious. No. Not at all.
Underneath that unfortunate heading was written, “Deficits in flexible thinking regarding interests, routines, perspectives and rules.” Two key words are used in these first two sentences “Impairment” in the heading and “deficit” in the second. The first is just incorrect and the second is a stereotype that while it may be true for some people it certainly cannot be stated as fact for ALL people. I purposely did not say “Autistic” people because rigidity and a reluctance to see another’s point of view are things many human beings have trouble with and this is not something that can be pinned on one specific neurology.
Below this, the graphic reads, “does not understand other people’s points of view or feelings.” Again I could list a number of non autistic people in the news who would certainly be terrific examples of this sentence. To suggest that this is a defining characteristic of Autism is inaccurate and plays into the whole “lacking empathy myth” that so many believe as fact about Autistic people. Please read Drs Kamila and Henry Markram’s Intense World Theory of Autism for another thought regarding autism. And by the way, the Markram’s, both of whom are neuroscientists, call it a “theory” because they understand that it is not scientifically proven fact, but a theory they developed and continue to tweak as they learn more. They are highly regarded, acclaimed, well published and the two people working in the field of autism whose work I believe will eventually change how autism is viewed.
The next line of text on the graphic reads, “Agitated by changes in routine.” This line would actually be fine if it weren’t for all that precedes it. But I would also suggest that this line could be said about all young children. And in the end this is my criticism of the information that is being given to people about autism. Autism as defined by a list of deficits that added up does little other than to create panic in parents of Autistic children. I’ve written about this before ‘here‘, ‘here‘ and ‘here.’ These posts are just a few examples of things I’ve written describing what fear did to me and why terror does not motivate people to make good decisions or help them decide how they can best support and encourage their children to be all they can be.
This particular graphic goes on with headings of: “Impairment in Social Relationships,” “Impairment in Social Communication” and at the base of the pyramid the heading says: “Additional Difficulties” where they list, among other things, “Appears to enjoy being held/restrained…” NO! This is absolutely wrong. You cannot write that someone “appears” to “enjoy” “being restrained” thereby justifying sadistic behavior done by staff/therapists/parents/ANYONE. And again, I want to SCREAM! Who is writing something like this? This is a graphic that is being used by a school for Autistic children. It is a graphic that is stating things as though proven fact. A graphic that parents, children, educators are seeing.
We have to ask ourselves – WHAT ARE WE DOING? How is it okay to publish such statements as though they are fact about a neurology that the best neuroscientists in the world are baffled by?
Please. If you are confronted with a graphic that is anything like what I’ve just described, do NOT share it. Do NOT believe that these things are a fact, just because they are written as though they are. Do not add to the misinformation by repeating it. DO NOT. It is statements like this, one page info graphics written by non autistic people, who are not neuroscientists, who seem to know very little about autism that cause tremendous damage to the Autistic population.
We must all become critical thinkers when it comes to information about autism. We know very little about the human brain. The best and smartest neuroscientists in the world are working hard to gain a better understanding. Most of what we are being told are theories, please let’s not treat these as fact.
Emma ~ 2010
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Posted in Autism, autism experts, Parenting
Tagged Autism, autism schools, autistic, autistic children, deficits, Educators, graphics about autism, Henry Markram, impairments, info graphics, Kamila Markram, neuroscience, neuroscientists, Parenting, Special Education, The Intense World Theory of Autism
Having had a downright, dreadful experience at our daughter’s ABA based preschool that was publicly funded and had come highly recommended, we were determined not to make the same mistake twice. We found a private school, the only non-ABA based school around at that time and for the next six years she went to it. She was loved, she was well taken care of and she learned almost nothing. It wasn’t that no one tried to teach her, it was that the way she was being taught was not a way she was able to learn. So we hired a private literacy specialist and over the next two years, Emma learned to read and write. But there was a “behavioral” piece to this person’s program that came at a cost. I don’t mean a financial cost, though there was that too, I mean a different sort of cost, the kind you can’t completely assess or gauge until years later. It was the cost that comes with being put into an emotional strait jacket. So, at a certain point, as I learned more about autism from Autistic people I realized we could not continue, despite her terrific gains in learning to read, write and type.
A year ago we found a public school (most no longer adhere to any one methodology, thankfully) where Emma is loved and well taken care of AND is learning. Her teacher is wonderful. The kind of teacher all parents dream of for their child. Loving, patient, kind, observant, respectful, presumes competence of all the children in her class, smart, has a sense of humor and open to anything that may prove helpful in teaching. The sort of teacher who takes time out of a Sunday afternoon to sit in on a session with Soma Mukhopadhyay and Emma and takes notes and then asks to borrow books written by Soma on her method. The sort of teacher who then comes over to our house to do a strategy session and begins to incorporate what she saw and has learned into her teaching. Suddenly Em’s backpack is filled with material from a grade level curriculum she is now doing at school with this amazing teacher. The sort of teacher who seems too good to be true. The sort of teacher you wish you could clone… The sort of teacher who is better than Xanax, Wellbutrin and Prozac without any of the side effects. Except that the school year is almost over and this amazing teacher is leaving to teach somewhere else and Emma is entering middle school, so we must say goodbye to her wonderful school and her incredible teacher.
This morning we toured a middle school. And guess what? It emphasizes the performing arts AND it looks wonderful, with a fantastic sensory gym and a “theatre room” with photos lining the hallways of the children performing their own musical that they wrote and performed in. Could we have created such a place more perfectly suited to Emma? It could be a little closer to where we live, but that would be nit-picky of me. So come this September, Emma will go to yet another school. That’s three different schools in three years. For any kid, that’s a lot of change. For Em, who was such a trooper about her “new” school last September, I am keeping my fingers crossed the transition will be as positive. Anyone have a cloning machine perfected? Because if her current teacher could just be cloned and her head teacher in this newer new school, I’d have no stress at all!
In the meantime, Em will visit her “new” school a couple of times over the summer months. From what we’ve seen so far, we are filled with hope!
Posted in Autism, Parenting, Soma Mukhopadhyay
Tagged Education, Educators, Methodology, Middle school, new school, Teacher, Transitions
Yesterday was the last day of Soma Mukhopadhyay‘s 4-day training. I wrote about it ‘here‘, ‘here‘, and ‘here‘. Soma packs an enormous amount of information into four days. She discussed everything from neural pathways of the brain to which parts of the brain are used during specific activities, to how to devise lesson plans and ways to physically position oneself in relation to the student. There were so many surprising moments, but one that I never could have anticipated, was how helpful it was to learn about the actual brain function during moments that are emotionally charged or OCD. Learning some of the basics in brain function demystified a great many things in a way I hadn’t before considered.
Given what we now know, and granted it isn’t much comparatively speaking, but is so much more than we knew even twenty years ago, it is astonishing that certain older therapies continue to be popular and used for autism. Two of the most destructive phrases used with an Autistic person are the dreaded, “Look at me!” and “Use your words!” I cannot list how many times Emma has been instructed to “use your words” only to do so and be ignored. It seems those who say “use your words” really mean, “use the words I want to hear”. Add to that the insistence that an Autistic student have “quiet hands” and not stim because it is believed learning cannot take place while stimming even though by removing the stim no learning can or will take place because we’ve just taken away the one thing that was allowing the student to stay focused and attend, even if it did not “look” that way to us. We non Autistics have a tough time understanding anything or anyone who is vaguely different from ourselves. Before we start calling ourselves “experts” in Autism, we might want to become “experts” in our own neurology first, at least we’d have a better handle on our own limitations and see how those can so easily dovetail into how we are interpreting what we’ve decided is “the truth” about someone else.
I have written about methodologies before on this blog. There are some that I find more troubling than others, but in the end, the thing I care about more than anything else is: is it helping my child? Is she learning? Is she safe? Will the short-term gains be at the cost of long-term pain and even trauma? What is this doing to her self-esteem? Is respectful interaction being modeled? Is she being humiliated, shamed, made to feel badly for the way her brain processes information? Is she being taught by people who believe in her ability to learn? Are her teachers believing her capable and giving her the tools she needs to flourish and be all that she can be? Is she assumed to be competent or is she being forced to prove her competence? Is she being taught the same equation, story, concept and terms over and over? Is she seen as a human being with the same rights as any other person? Would YOU want to be treated the way you are treating and teaching this person?
I don’t care what the methodology is, who created it or how many people believe in its efficacy, if it isn’t taking these questions into account, I am not interested in it. I do not care what others believe, I don’t care what the “experts” say, I don’t care how many letters a person has after their name or who created the methodology or the various papers and/or books the person has written, if the methodology is not attempting to consider these other ideas, I am not interested in it. I, as a parent, am not invested in any particular methodology unlike so many schools. And for that reason I have far more leeway than most schools do, to keep trying different things until we (I’m including my wonderful husband) find the thing or a combination of things that will best help our daughter learn, grow and become all that she can be. In the end that is what we care about more than anything.
This weekend I will create a lesson plan for my daughter with age appropriate materials for next week’s RPM session. I am hoping I will be able to demonstrate, at least some of what I’ve learned, to Emma’s therapist and her teacher. But I also know I will make mistakes, I do not expect that after four days of an intensive training I will do Soma’s method well, but I think I have a fairly good understanding of the basics so that I can start, at least, trying.
Wish me luck!
Soma Mukhopadhyay – March, 2013
I’m halfway through a four-day training with Soma and I have filled more than half a legal sized notepad with notes. Yesterday we covered Mental Mapping/ the different stages of RPM and Implementation. I told Soma about my encounter with the child who didn’t want to work and immediately hit themselves. I described how I’d had them spell “hitting” on the letter board and how this had immediately diffused the situation. Soma then gave me more terrific suggestions on how to devise a lesson plan around an action such as hitting. An example of this is (I”m making this up) “I would like to know more about hitting. What else can you hit? Do you hit the sky or a ball?” Soma spoke of how when emotions are running high, switching to numbers and math, which have no emotion can be helpful during emotional outbursts. “How many times can you hit the ball? Here let’s count. 1, 2, 3, 4, 5. You hit 5 times and if you hit once more, that would be 87 times or 6 times?”
We spent a great deal of time discussing the ways in which one can learn about a student through their preferences, stims, what they’ve been exposed to, skill levels and abilities, tolerance levels, acquired knowledge and defenses. Soma then covered how one goes about implementing all of this through lesson plans. Each step of the way one presumes competence in the student’s ability to learn and be taught without presuming that they already know how to read, write, add and subtract. Through the various activities it quickly becomes clear whether the student needs to be shown how to spell a word such as “hitting” or whether they already know the word. On the first day one of the students, whom Soma had never met before, sat down and after working with her for fifteen minutes or so, was asked what his favorite color was. She had him choose from one of two stencil boards for the first letter. From that board he chose the letter “r”. He then proceeded to type ‘r’, ‘e’, ‘d’. The following day a number of the people taking the training expressed skepticism that the student actually could read or write. One suggested that red may not have been his favorite color.
When asked how they knew that he couldn’t read or write, they weren’t able to give specific reasons, it seems many just assumed he could not. It reminded me of the years and years I spent believing a whole variety of things about my own child, which turned out to be untrue. I had no proof that the things I thought were actually true, I had just assumed and then behaved toward her as though it were fact. Perhaps one of the single most destructive things we can do to our children, students, the people we meet is to make assumptions about their intelligence and abilities. Beliefs based in nothing other than unfounded assumptions and our own biases of those who look or seem to us as not being capable. These assumptions are dangerous and can do real harm. As I’ve said before ~ to presume competence and be wrong will do no harm, to presume incompetence and be wrong can and will do tremendous damage.
Soma – 2013
Emma's Hope Book 