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
Each day is a day of discovery with moments of elation and excitement… at least this is my take away from the past few weeks. Here are a few of Emma’s comments along the way that she gave me permission to post.
Discussing black holes (Dr. C and Emma are kindred souls.)
Dr. C: What has happened to the atomic structure within a black hole?
Emma: Opportunity to riot. Structure is chaotic.
Dr. C: Basically this is correct. The gravitational pull is so strong that the atomic structure has collapsed. Thus nuclei and electrons are fused together with no space between them.
Emma: Just like society during a riot.
Dr. C: These societal people have collapsed onto each other to further this analogy.
Emma: Exactly.
After reading Act 1 Scene 1 of Romeo and Juliet
Ariane: So what do you think so far?
Emma: Understand that it is a heady play and play on words that pities human rage and love equally.
Reading and discussing the Texas Revolution
Emma: Because of dissent a culture was born.
Regarding the Trail of Tears and how the Cherokee were the last tribe to make the grueling 800 plus mile trek to the “Indian Territories” I asked Emma to tell me something about this picture.
Trail of Tears
Emma: Exodus. Forced displacement of people with little choice. It tells something about man’s wish for power. Oppression is an ongoing story.
And finally on the topic of being home and not in a classroom setting – Emma typed, “naturally living in world’s infinite candy store of learning is to be in constant awe.”
Posted in Autism, homeschooling, Parenting
Tagged Autism, autistic, Education, history, homeschooling, learning, non-speaking, Parenting, Romeo and Juliet, RPM, science, society, teaching, Texas Revolution, Trail of Tears, typing to communicate, unschooling
*As always Emma gave me permission to post this. Emma typed her words by independently pointing to the letters on a bluetooth qwerty keyboard attached to her iPad.
This morning I asked Emma what she wanted to talk about. She wrote, “How about we talk about communication abilities.”
A: “Okay, that’s a great idea!”
E: “Especially for someone like me.”
A: “Yes, tell me more.”
E: I am able to communicate really well with words, but people don’t expect me to, so when they see me typing, they eagerly watch, but they don’t listen to what I write as much as they listen to the words tumbling from my mouth.”
A: “I think that’s such an amazing observation!”
E: “Know that believing in someone’s ability will be greeted with inward smiles, so you must never give the doubts breathing space.”
We talked about “ability” and the power of believing in both oneself and another versus doubting.
E: “Many insist on finding proof, but when sitting with someone like me they only see the things I do that confirm what they already believe and turn their backs on all that would prove them wrong.”
A: “Is there anything or anyone specific you’re referring to?”
E: “It is what I have experienced, sadly.”
I told Emma how sorry I was. We talked about this more and then I said, “I think your words really do affect many people who are listening and as a result are changing how they see their child. Even if only a few people listen, it’s worth repeating, don’t you think?
E: “Some that change their views, teach others well.”
A: Yes, I think so too. Many people have reached out to us on Facebook and on the blog to tell us. It’s always so wonderful when we hear from them.
E: “Now we must remain patient and doggedly trudge ahead.”
I told Emma, she was leading the way and I would always follow.
E: “Together we will eagerly tether our ideas, so having happy thoughts will woo anger.”
Ariane and Emma ~ May 2014
Posted in Autism, communication, Parenting
Tagged abilities, Autism, autistic, beliefs, Education, language, Patience, presume competence, proof, Rapid Prompting Method, RPM, teaching
Respect. I think about this word a great deal. There are things I do, things I think in any given moment are examples of me teaching respect and yet in the teaching I am not modeling the respect I am trying to teach. Here’s an example of what I mean – (this example is fairly mundane, but it serves my purpose because it’s something that most of us can relate to.)
Let’s say Emma and I are in a new place. Somewhere, perhaps like the place we recently went to give a talk on Autism Acceptance, where most or all of the people are strangers. As we enter the room I notice someone I do know and they walk over to say hello. My upbringing dictates that I introduce this person to my husband and daughter. I do this by saying, “Hello _______, this is my husband, Richard, and my daughter, Emma.” The person nods and says hello, maybe they even extend their hand. My husband without thinking, says something along the lines of “Hello _______, it’s nice to meet you.” Maybe they shake hands. My daughter turns away saying nothing. I am aware that this is not the conventional way (polite) to greet someone so I, without thinking, direct her, “Emma say hello to _________.”
I know enough not to ask her to touch the other person, even if they’ve extended their hand, but I forget that there may be a good reason for her non-greeting. Perhaps the lights are too bright, or all these strangers are too much, perhaps she is overwhelmed, or the noise is making it difficult for her to concentrate on any one thing. Perhaps she senses this person is not someone she gets a good vibe from, perhaps the person is standing too close to her. Regardless of whether I know what could be causing her not to say hello, demanding that she do so, is not the best thing for me to do.
Instead, I might lean down and whisper in her ear, “Do you want to try saying hello to _____?” If she does decide she’d like to and can, fine and if she cannot, for whatever reason, then that’s fine too. But before I say something like this I will want to have done a lesson plan around “social niceties” or the things people say to each other and why they do so. This is the ideal. However this is not what I always do, because I forget, but these are the little things I constantly think about. How can I parent better? How could I have approached that situation more respectfully? How can I use this as a teaching moment, not just for my daughter, but for myself?
One of the things I’ve learned over the years is that kindness, directed toward myself and others is the single best way most of us learn. When someone yells at me, I don’t learn, in fact, I shut down. Even if the person does not yell, but criticizes me, scolds me, directs me to do something without explanation, I feel myself becoming self-conscious or worse, shutting down. I close in on myself. I can’t hear what the other person is saying. I become engaged in an internal battle. When someone is respectful and kind, I am open and much more likely to listen to them.
People say things like – “oh but that takes such patience,” or “who has the time to do all that?” I understand. But I know that the other way, while easy and perhaps quick, is nothing more than a quick fix, if that. The person may say the words I’ve just directed them to say, but the next time I will go through the same process. But there’s an even more important piece to all of this, because one can argue, who cares about social convention? Why should any of us care? Why should we say hello to one another? None of this matters. And I agree, none of this is really the point, the bigger point is that I want my children to understand that we live in a world filled with other people who may or may not share their neurology and that many of those people when met for the first time may offer their hand, if in the United States, and say hello. I want my children to not be put off by this, but know that they have the option to say hello if they are able to, or not and that I will be respectful of them no matter what their response is.
Directing my daughter to say words that I give her, is not being respectful of her and it also is not presuming competence. When I give her words to say, I am allowing my issues around social convention to take precedence over respect for my daughter and her sensitivities to her environment. I want to do better than that.
*I purposely have used the present tense, as this is something I continue to explore and am trying to do things differently. This is very much a work in progress!
Dressed for spring rain – April 8th, 2014
Posted in Autism, communication, Parenting
Tagged autistic, communication, language, Parenting, presume competence, respect, social niceties, social rules, Speech, teaching, writing
Yesterday while working with Em (we are learning about American Indians) I had a moment of panic. I thought, I have no idea what I’m doing here. I don’t know how to teach this material. I don’t know that she understands any of this.
The more panicked I became, the more impatient I felt. The more impatient I felt the more in touch with my anger I was. When she randomly pointed to the wrong answer I said in a stern voice, “No!” Emma doesn’t respond well to “No!” I know this. But in that moment yesterday, I needed to take a break. In that moment, neither of us were going to be well served by pushing ahead with the material. It didn’t matter that I’d printed out more than a dozen photographs of various American Indians and the living structures different tribes used. It didn’t matter that I’d prepared material to discuss how some planted and became farmers, while others fished and still others hunted buffalo. None of it mattered because I was having feelings about how she should be able to learn it in the way I was teaching it, despite the fact that the way I was presenting the material was not the way I’ve been taught.
I was not, in that moment, able to practice patience and good teaching. In addition to this, my thinking was my own worst enemy. Whenever I begin to think in terms of fearful, projected thinking, and then ask questions such as, “what if she doesn’t understand this?” or “why didn’t she know the answer to that question?” I begin to feel impatient and then angry. In that moment I was not able to see that I was asking the wrong questions. In that moment I was not presuming competence in her ability to learn. I know she can learn the material. I have seen her learn all kinds of material. This is an example of expectations, coupled with impatience and not teaching the material in the best possible way.
It is during moments like this that I need to take a break. I know this. It seems that this would be a fairly easy thing to recognize and then implement by saying something like. “Oh, hey. I need to take a break. Let’s come back to this later.” Or some other equally non-judgmental comment, but this isn’t easy for me nor does it come naturally. I slide quickly into either self recrimination or fear and annoyance that she isn’t attending to the material (and me) in the way I would like. *Breathe* It’s okay. You’re okay. Just take a deep breath. It’s all fine. In moments such as this, it is vitally important that I take good care of myself so that I don’t do harm to those around me. I’ve learned this. I know this. This is fact.
So I am writing all of this out here, not as a public flogging or because I’m seeking absolution, but as a gentle reminder to myself that the way I treat myself is the way I treat others. It’s all practice. My specific practice includes patience, remaining calm in the face of fear and annoyance. Recognizing, without judgement, that I do not always behave the way I would ideally like. Admitting and accepting that I am flawed. And doing everything in my power to be the very best parent (and person) I can be. I can’t rewind the tape of yesterday’s session, but I can acknowledge what happened and that I do have the tools to present the material differently this afternoon.
This lesson of patience and calm when my emotions are running in the red is one I have not yet mastered, but am working toward one day at a time.
Someone asked me why would I teach my child age appropriate topics such as the American Indians, the arrival of Europeans to America, the Roman Empire and the difference between amphibians and reptiles, when tying her shoes, answering (whether verbally or by typing) a why question and riding a two-wheel bike has yet to be accomplished.
The short answer is – they are not mutually exclusive. It is not that one thing gets taught and the other is left to languish. I believe all these things are important for any child to learn; why shouldn’t my child have the opportunity to learn these things too? But just to play devils advocate, let’s say that the questioner still asks, but why? To them I say, because knowledge is freedom. Knowledge gives us context, history provides us with choices, knowing how our government works gives us important information about leadership, honesty and conversely dishonesty. Learning about geography gives us information about the physical world we inhabit. Reading Wordsworth or Shakespeare or Susan Sontag, studying a painting by Rubens or Renoir or Basquiat, listening to music by Rachmaninov or Ray Charles or, my daughter’s personal favorite, Gwen Stefani transports us, encourages us to think both analytically and creatively and enhances our lives.
Ralph Saverese, author of Reasonable People: A Memoir of Autism and Adoption wrote a wonderful piece about a year ago, The Silver Trumpet of Freedom about his non-speaking, Autistic, son DJ who had just been accepted into Oberlin. It’s a terrific piece and I encourage all of you to take a few minutes to read it. I’ll wait.
Right here.
Seriously.
Go.
Read it.
What many believe to be true about Autism is proving again and again to be incorrect. What many believe to be true about those who are Autistic AND non-speaking is proving to be incorrect. Our ideas about someone who has physical challenges AND is Autistic AND does not speak are proving to be incorrect. Our incorrect beliefs are limiting how that segment of the population is taught and what information they are given access to.
This must change.
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
What follows is my interview with a teacher. A teacher who teaches Autistic students. A teacher who is Autistic.
When were you diagnosed with Autism?
I self-diagnosed as having NLD (Nonverbal Learning Disability) (which I mistakenly thought was mutually exclusive to Autism – a good reason to get a professional diagnosis, not a web diagnosis) in college, which brought me a lot of peace of mind and self-understanding. (And helped me make peace with a lot of my past.) I was in my 30s when I finally made the decision to get the formal diagnosis. (I was both right and wrong: I do have NLD, but I’m also on the Autism Spectrum.)
I got the diagnosis because I was having a lot of trouble communicating effectively at work, and I was getting written up for it. My supervisors were trying to work with me, but I was afraid I was going to lose my job. It wasn’t the first job I’ve had that happen at. The problems my coworkers were going to administration about were hauntingly familiar: my voice tone, my inability to read others voice tone, my quick answers that don’t make sense and sound frustrated. It was a pattern I’d seen before and had never had any success stopping or changing. I knew I needed help if I wanted to save this job.
Why do you prefer remaining anonymous?
For now, at least, I want to maintain control over disclosure. Also, privacy. The web is public and it stays there forever. I’m not comfortable with anything about me, disability related or not, being out there like that. I don’t have anything meaningful out on the web under my real name, and I’ll keep it that way, thanks.
How did you get into teaching?
I think it’s in my blood. My dad is a teacher. I remember being in first grade, when everyone wants to be police officers and firemen: I wanted to be a special education teacher. I got a BA in Psychology and spent 5 years doing direct care before moving to work in the schools. I worked as a paraprofessional while I got my M.Ed. I’m certified in intensive special needs and deaf/blind education.
Would you talk about your childhood and how autism affected it?
I did the stereotypical “little professor” thing. My mom says my favorite word as a kid was “actually.” I had friends growing up, and if my parents thought my relationships with them were a little off, I never noticed. I had no other standard of relations, and I was happy with what I had. My mom tried vainly to model more appropriate social interactions (my poor mother) but it all went right over my head (I do not learn from environmental cues or social models.)
Middle and high school were rough. I was the victim of significant bullying. Kids are mean. I considered changing schools (I went to public school) but decided against it. Instead, I dove into my interests: computers, foreign languages, band, technical theater. Bullying happens during the unstructured times of the school day. I was never unstructured, participating in more classes and extracurriculars than there were hours in the day. (I seriously could have used Hermione’s time turner back then….) Not only did it give me structure and purpose, but it successfully buffered me from my would-be tormentors.
Are you concerned that if the school where you work knew you were Autistic your job would be in jeopardy?
I’d be worried about an employer learning that I was Autistic before I had a chance to prove myself as a teacher, yes. The concerns about my communication problems at this job came in the context of “we love your passion, but…” I had already proven myself, multiple times over, as a good teacher getting excellent results with students who are considered difficult. Afterward, I could see I had to re-prove myself because the words of my NT (neurotypical) paraprofessionals (sometimes not just in the area of classroom communication) carried more weight than mine did. I have reason to believe we’ve gotten past that now, but it lingers in the back of my mind. I know I have to work harder and sometimes that makes me mad. Luckily, I have an administration and paraprofessionals who support me in the work I do and who respect that I am approaching it from an Autistic perspective (even if they don’t always understand that perspective.) I haven’t always been that lucky, and I am continuously grateful for it.
You say, “with the right accommodations..” can you give an example of a couple that are helpful?
Using written communication when possible. This frees me up to only address questions that need to be addressed, which is means I am more likely to be clearer because I can devote the needed resources to perspective taking and processing time. Regular meetings. I don’t pick up on things incidentally unless I’m working hard to pay attention to everything that is going on. That’s impossible when your class is spread between multiple locations. Regular meetings give me a chance to make sure we’re all on the same page at the end of every day and put out any fires before they get out of hand. However, the effectiveness of these meetings is predicated on….
Direct communication from staff. This is quite possibly the hardest accommodation to get and the most important. I ask everyone I work with to be direct with me and everyone says they will. But saying and doing are not the same thing. Most NTs find being as direct as I need them to be as impossible as I find reading their non-verbal language. It’s a real communication gap. I’m incredibly fortunate that I have a para that can bridge the gap. Some of my new paras are starting to learn as well, and I’m starting to learn to read their individual cues. Translation is never as good as reading the original, but we get by.
Having communication support people I can turn to. I have 2 coworkers I can trust to run things by when I’m concerned about how I’m coming across or not sure if I missed a cue from someone else. This doesn’t help, of course, when I’m oblivious to the fact that there was something I should be concerned about in the first place, but it reduces the pool of potential landmines, at least. Also, these are people who can listen for what I’m not hearing on the rumour mill (because I’ll never hear it) and potentially warn me of landmines I’m not aware of. They’ve definitely saved me from several potential disasters already this year.
What are the most common misperceptions you face in trying to teach this population?
Top five misconceptions held by administrators, paraprofessionals, parents, and community members that make my job harder:
Have you been surprised by any child’s ability?
Have I have taught a student who had more skills than their assessments claimed? Absolutely. Have I ever had a student make more progress in a year than I anticipated and had to amend the IEP part way through? I love it when that happens! Have I ever taught a student who may not have a lot of skills that can be formally assessed, but who enriched my classroom in so many other ways? All the time. I don’t like the word “surprised” – it’s an autism thing, I guess.
How do you deal with self-injurious behavior?
Behavior does not occur in a vacuum and all behavior is communication. SIB (self-injurious behavior) usually has a sensory component, but a FBA (functional behavior assessment) will give clearer answers. We need to look at the environment, the student’s communication strategies, and antecedents and consequences. What is the cause of the stress? How can we teach the student to deal with it more effectively? Generally, positive behavior supports are most effective, but they have to be individualized in order to be effective. What is reinforcing to one student may be aversive to another. Behavior does not occur in a vacuum, and we cannot try to treat it in one.
Can you describe some of your own sensory issues and how they impact your life and work?
I only recently really mastered reliable daily living skill routines. Showering was a difficult sensory experience for me for years. I still have trouble with toothbrushing and flossing, but I’m working on it. I eat pretty bland foods (though, due to food allergies, my diet is both more varied and more monotonous than average) because I don’t care much for significant smells or tastes. I’ve gotten more tolerant of different clothing textures than I was when I was younger. I still freak out at certain textures, but my repertoire has expanded significantly from the “cotton/poly blend only” I wore when I was younger.
At work, I’m in control over the visual environment, since I’m the classroom teacher. So I keep it pretty visually quiet, both for my own sake and that of my students. Any conversations go out of the room, which really helps all of us focus. My para knows to ignore when I’m self-talking, which is my primary self-calming strategy (I try to take that out of the room too, when I can.) I stim when I need to. So do my students. I don’t see that (the stimming) as particularly impacting our work. I bring figits or sit on the floor during meetings (I sit in the back so it’s not disruptive.)
In previous years, when I was trying to pass and having more communication problems, I needed more sensory breaks and did a lot more self-talk (which in turn cased more communication problems.) Now that I’m not trying to pass, I’m more comfortable and less stressed, which means I’m generally more sensory regulated – and if I’m not, dealing with it is no big deal.
Are there specific things you suggest schools can do to help their students?
I think a lot of schools do the first half of this puzzle really well. They have proactive sensory programs: do this activity after this interval for this amount of time. And they have reactive programs: if you see this behavior, offer these choices for this amount of time. The good ones have a mixture of the two. Where the programs tend to miss the mark is in taking it to the next level: teaching the student to recognize when their sensory system is starting to become disregulated and what to do about it. There are some good programs out there for teaching this skill: The Alert Program(TM) is probably the most popular. I’m a fan, personally, of the Incredible 5-Point Scale, because the students can apply it to more than just their sensory system and because it has a more flexible metaphor (colors, numbers, can use pictures) and it ties into emotional regulation and understanding.
What is your opinion regarding stimming?
I stim. My students stim. I won’t stop a student from stimming. My para (the only NT in the room, poor guy) frequently points out that everyone stims, it’s just that society has declared NT stims socially acceptable and autistic stims unacceptable. That said, there are also students who demonstrate self-stimulatory behaviors that are not self-calming but rather a precursor to or the beginnings of further stressed or out of control behavior. It is extremely important to know your student and to know the difference between these two types of behaviors. In one situation, the student is using their own coping strategies to de-stress, and in the other the student is indicating the beginning of losing control, and the environment or stressors needs to be addressed to prevent further escalation.
Have you ever witnessed treatment of a student that you objected?
I’d love to say “no,” but yes, I have. Most of the time it’s things like not giving enough wait time and over-prompting. I get incredibly frustrated by the way that students who are not socially engaging, especially if they have challenging behaviors, tend to get left out in favor of the “easier” kids. But also, yes, I’ve seen what you’re really asking about. I’ve seen students physically moved or restrained when they shouldn’t have been. I’m trained in the use of physical restraint, and yes, I’ve had to use it. Do I like it? No. Is it ever my preference to use it? No. Will I use it as a last resort to keep students safe? Absolutely. And I would 100x prefer to be called in and asked to do so then to have people who are untrained and don’t know what they are doing try to make do. That way only leads to injury, trauma, and possibly death. And I’m not afraid to call it like I see it. I’ve reported coworkers to administration and when needed I’ve filed 51a reports (reports of abuse or neglect.) There are certain benefits to having an overarching sense of right and fair and not feeling bound by social conventions, at least where the students rights and safety are concerned.
Is there any methodology that you prefer and why is that?
The short answer to this question is no. I am very wary of any program that says that a particular methodology is right for all students with diagnosis x. I don’t believe that to be true. The role of the teacher is to be familiar with the breadth of instructional tools that are out there and to find (or adapt) the right tool for the individual student to learn the specific skill. For one student, that might be Discrete Trial Training to learn to attend to directions given in ASL. For another student, that may be a phonics curriculum to learn to read. A third student might be learning vocabulary in the natural context of a community work placement. The one thing that all of these methods have in common is data. I need reliable data taken daily on student achievement to know if the methodology is effective and the student is making progress, or if the instructional method needs to be changed. There is no right or wrong method; I don’t even believe there is a best method. The question is whether the method being used is effectively teaching the student the desired skill, and there is only one way to answer that question: data.
Are there any methodologies that you believe are harmful?
Aversives, repeated use of any form of punishment (including time outs,) restraint used as a programming tool as opposed to an emergency procedure. If you’re doing it on a regular basis, something is wrong.
How do you work with a curriculum given your student’s disparate needs?
The short answer is good staffing ratios and competent paras. Also, using the principles of Universal Design for Learning. By differentiating how I engage each student, and with paraprofessional support for behavior and data-taking, I can have three students engaged in a group setting. I can have a fourth student, with additional paraprofessional support, engaging in the same material with us and connecting to the group as able. If you’re counting, that’s 3 staff and 4 students. I’ve just described to you what my classroom looks like most days.
In an ideal world where Autism carried no stigma and you were able to be open about being Autistic, are there specific things that would allow you to do your job better?
I would like to be able to work with my students on understanding Autistic culture and the Autism community. My school does very well teaching our Deaf students about Deaf Culture and their Deaf identity. I believe we could do the same for the Autistic students. I would like to make that happen, and I know that no one else will lead it, but it would require being open about being Autistic and I’m not ready for that yet. I trust my administration and those I’ve told, but I am not comfortable working with the rest of my co-workers as an Autistic person, which I’d need to do in order to make that happen for these students. It’s something I want to do, but not yet. One day, I hope.
What do you advise people who are thinking about entering the field of special education? Is there anything you wish you’d known when you were just starting out?
Work with kids with disabilities before you go into the schools. Work at multiple schools (or with kids from multiple programs) before you start teaching. One of the downsides to being in the schools, especially since most teachers work as paraprofessionals while they get their degree, is that you work with one student, or one group of students, for years. There is frequently only one or two special education classrooms in the building, so there aren’t a lot of models to observe. I have had too many experiences of people singing the praises of teachers I know to be mediocre at best, because they have no standard to compare them to. See as many different students and teachers as you can before you settle on a specific subset of the population, a school, and a classroom where you want to work. Most importantly, spend time working with typically developing children. You’ll need that reference to fall back on so you can recognize what’s typical age-appropriate nonsense and what is actually behavior that needs to be addressed. We tend to acquire tunnel vision in special education; make sure you don’t put the blinders on until you have to.
What do you advise parents look for of non-speaking children seeking a good school?
Without knowing the specific student or her goals, it is impossible for me to say what program is best. I can tell you what I look for in a school where I would consider working. The one thing that sends up red flags and makes me stay far away is a school that believes there is one right method to teach all students. Simply put, there isn’t. Beyond that, I look for evidence that the people there know how to use picture supports and both high and low tech communication supports, not just for schedules but integrated into everyday activity: academics, leisure/social time, specials, lunch, etc. For an older student, I look for evidence of functional skills and community based learning, not just using pictures to represent and role-play functional community activities, but actually getting out into the school and local community and learning the skills in the real environment.
If you could create a “dream school” what would it be like?
My dream school would have the physical environment, educational methodologies, peers, and teachers and paras with appropriate training and ratios to give each student access to both the general educational curriculum and any related services she needs to be successful as an adult: whatever that looks like for each individual student. My dream school is not one school, but a range of options for every student so that the right option is always available. That option would naturally change over time as the child grows and her needs change, and no one would question the need for that change.
Have you had parents or other staff question the competence of a child in your class?
I had a former administrator tell me a student didn’t matter because his family would take care of him after graduation and to focus all my attention and resources on another student who, she said, actually had a chance of being fully independent. I basically ignored her. They are now both working in the community with support.
Have you had a parent question their child’s competence?
Not directly, but I certainly have known parents who have underestimated their child’s academic or independence skills.
How have you dealt with that?
I don’t judge, because I can’t. I don’t walk in their shoes. I only see their child at school. I only know what their child does in one environment and I understand well that students will present differently in different environments. I will encourage bridging to home; I will provide support; I will provide information and data. But I will not judge, because I do not, I cannot, really know.
Posted in Autism, Education, teaching
Tagged Autism, autism spectrum, Education, school, Special Education, Stimming, teaching
Sometimes it all feels wrong. You know? We’ve been working with Emma on her literacy, reading, writing, typing and then a couple of months ago I just couldn’t keep doing it. I hit a wall. I kept telling myself, you’re just tired. You’ll get back in the saddle, give yourself a break, you’ll feel more energetic, you will. You just need a little break.
But now it’s several months since I gave myself that little talk and I am no closer to “getting back into the saddle” than the day I said all of that. And here’s the thing… when Em was first diagnosed, we did what everyone advised us to do. We fought and were given 40 hours of ABA, we were trained to continue the ABA after the therapists went home and during the weekends. Emma was bombarded. We called it baby boot camp. It was horrible. I hated it. I remember saying to the diminishing few who’d listen, But I don’t want to be Emma’s therapist. I want to be her mother.
I use to sit with Nic and Em in our big rocking chair, we still have it. We still fight over who gets to sit in it, though these days, Richard has successfully commandeered it as his own. But when the children were still little, it was mine, all mine and I’d sit in it with both children in my lap, holding them, rocking them. Smelling their heads, that smell that only small children have, that smell that no one’s managed to bottle, but that if anyone did, they’d make millions off all us moms. I loved my new role as mom and I wasn’t thrilled to trade it in for therapist/autism mom extraordinaire.
What was so wild about those early days was how all the “experts” I listened to, I believed they knew better than me. Despite the fact I kept reading the masses of research saying how little we actually knew, how much we had to learn, there was never any shortage of people who seemed to think they knew it all. Funny that I never thought to question them in the beginning. Or more accurately, I did question them, but I tamped those questions down because I so wanted to believe, I needed to believe that someone somewhere knew what the hell they were talking about.
But they didn’t. Not really. They certainly didn’t know about Emma. Every single thing anyone in the field of autism predicted about Emma has proven incorrect. Everything. It’s kind of astounding. But it’s true. “Oh, she’ll be mainstreamed by the time she’s in kindergarten” they assured us, always with the codicil, “if you keep doing ______ (fill in the blank).” “You’re fortunate she’s so mild. She’ll be one of those kids who loses the diagnosis,” they’d say with a tone of certainty. And so we put our better judgment aside, we tamped down our questions, we trained, we worked with her, we questioned her, we showed her the flash cards with the bike and the green t-shirt and the yellow car, we played umpteen games of peek-a-boo and sang the ABC song and Head, shoulders, knees and toes for the nine hundredth time, never questioning why we were doing this. Never asking ourselves, is this really the best way to spend our time with her? Are any of these things remotely meaningful to her or are we doing this because this is what a neurotypical child would sing or play? That Emma was not a neurotypical child was, evidently, not the point.
Now Emma’s ten. If you ask her, she’ll tell you she’s nine. I keep meaning to teach her the old, don’t-you-know-its-rude-to-ask-a-lady-her-age routine, thus letting her off the hook. Because really, who cares? We ask each other questions like “how old are you,” which is equivalent to the adult question, “what do you do?” but it’s really a way to fill in the silence. A silence that can be painful. A silence that doesn’t right the feeling that it’s all wrong. So we fill it in with words and ideas and studies and tests, but we don’t stop to think, what exactly are we testing? What exactly are we studying? What exactly are we doing? If we test someone and make conclusions based in neurotypical thinking aren’t we missing the point?
I spoke with an Autistic friend yesterday. She told me she was given a standard IQ test where she proceeded to get every single answer right, so they kept giving it to her, trying to figure out how it was that she was getting all those answers right because she presented as having so many other “issues” and was clearly autistic, they concluded that something was wrong with the way the test was being given. Meanwhile she thought it all great fun and each time they gave the test to her, she just dug in and cheerfully gave all the correct answers again and again, confounding them.
Which brings me back to all these therapies that require parents to become teacher and therapist. I’m not a teacher for good reason. I do not have the skills or the desire to be. And while I’ve stepped up to the proverbial plate again and again to do what needed to be done, I don’t want to continue. I want to be Emma’s mom. I like being Emma’s mom. I love reading to her and playing with her and dancing with her and being silly and making stupid faces and making up ridiculous sounding laughs and running around pretending to be a monster and cooking with her and showing her how to fold and sort the laundry and how to brush her hair and give her pedicures and manicures and run through the sprinklers together. I don’t want to be her teacher too.
And maybe, just maybe I don’t have to be. Maybe all those experts and autism specialists are wrong. Maybe I can just be her Mom and that’s enough.
Posted in Autism, literacy, Parenting
Tagged autism spectrum, Emma, Intelligence quotient, literacy, neurotypical, Parenting, teaching
When Emma was a year old, in a moment of impatience we bought her a baby doll for Christmas. Despite the fact she showed no interest in dolls of any kind, despite the fact she showed little interest in any of the toys we tried to entice her with. Emma was much more of a doer than a child who sat happily playing with a toy. This was a kid who liked to move. Take her to the playground and she made the other kids look lethargic. I admit, I took a certain degree of pride in her rejection of all toys and her desire to move and run and slide instead. Emma’s disinterest reminded me of my father who shunned all holidays, grousing that they no longer celebrated what they were intended to, but instead fed the insatiable Hallmark Greeting Card’s appetite for cheap sentimentality and had become a financial boon for ad agencies. His grumpiness about it all, increased with his age. Emma’s resolute rejection of all toys, her disinterest in videos, movies, and anything else that required her to sit still, would have made my father proud.
The baby doll we purchased was pudgy, with blonde pigtails, and came with a little toilet, hairbrush, mirror, bathrobe and towel. All that was missing was a mani/pedi kit and perhaps some massage oil. I bought a couple of little playsuits for the doll and wrapped everything up in pretty paper with a big satin ribbon. We had to help Emma as she showed no enthusiasm in her gifts piled under the Christmas tree. She begrudgingly humored us by tearing open the present, but showed no excitement, it was as though it were a chore, something that was expected of her. When she saw the baby doll, securely fastened in it’s box with a clear window so that she could see it, but not actually reach it, she lost all interest and wandered off. “Emma, look! It’s your very own baby doll!” I exclaimed. “What are you going to call her?” Being ignored during those early years was something we had grown used to. Still, I persisted, carrying the baby doll over to her, I said, “What’s her name?” Emma refused to look at me or the baby doll.
Years later, during out DIR (Developmental, Individual Difference, Relationship-based Model, also known as floortime) phase, the baby doll, now joined by a number of other baby dolls, groovy girls, Jessy and Woody from the Toy Story, Tim Burton’s Corpse Bride, each one evidence of our ignorance and dogged determination to engage her in the world of make believe, lay untouched in a pink plastic bin near her bed. In a moment of inspiration I yanked the baby doll from its bin and thrusting it in Emma’s face, asked, “Oh look Em! What’s her name?” Emma said nothing, but I persisted. “What do you call her, Em?” And then Emma spoke. “Doll,” she said. “Yes, but what will you call her?” I was nothing, if not determined. “Is her name, Tabitha or Katherine, Anastasia, Cynthia? What’s her name, Em?” The idea that naming something was not a concept Emma fully grasped, never occurred to me. When Emma then repeated the names I was throwing out, I eventually gave up and as I was leaving, Emma said, simply, “Doll.”
And of course, she was right. It was a doll. To Emma that was all she was. A doll. For a child with little or no ability to understand the world of make believe, the idea of naming a doll, must have seemed bizarre. Why would one do that?
Last weekend, at Barnes & Noble, I showed Emma a book called Biscuit, a beginning reader book. Emma took the book from me, sat down on the carpet and pointed to the first word. “Biscuit, that word says Biscuit. That’s the dog’s name,” I said. Emma nodded and continued to read the book, stumbling over a couple of unknown words, but for the most part being able to get through it with little help from me. As I sat with her I remembered her baby doll and it occurred to me, she does not fully understand the concept of naming. It is something I will attempt to teach her this weekend.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book.com
Posted in Autism, Parenting, Pretend Play
Tagged Autism, autistic, autistic behavior, literacy, Parenting, Pretend Play, reading, teaching
I have maintained in previous posts, that I continue to believe in my daughter’s brilliance. Current IQ tests do not account for children who are non-verbal or with limited or impaired speech. I have no way of knowing what Emma’s IQ is, but I can tell you there are things Emma does, on a daily basis, indicating her mind is capable of some pretty astonishing leaps. What follows are a number of examples.
Our refrigerator light is out. The first thing I did was replace the bulb, only to find that wasn’t the problem. A little later Emma opened the refrigerator door and pressed a switch on the ceiling of the refrigerator and immediately all the lights came back on.
“Wow Em! How did you know to do that?” I asked incredulous.
“Lights broken,” Emma said, nodding her head up and down as she removed her caramel yogurt from the frig.
“Yeah, but how did you get them back on?” I went over to her and watched as she reopened the door and pressed on the little white button that activates the lights when the door is opened, something I did not realize until Emma showed me. The lights flickered for a second and then went out. Emma reached up and matter-of-factly jiggled the switch and the lights came back on.
“There,” she said, with a certain degree of satisfaction.
After a few days of all of us wiggling the switch, the lights flickered on and off feebly one last time before remaining permanently off and I had to call the company to get the light switch replaced. Now to many of you, this may seem completely commonplace, but I can tell you, I had spent quite a bit of time trying to figure out what was causing the problem. I should have saved my time and just asked Emma.
Yesterday while Emma and I worked on her literacy program requiring her to choose the word “leg” from several options, she positioned the cursor over the correct button then clicked on the space bar. Then she looked over at me with a mischievous grin as if to say – did you see that?
Again, hitting the space bar instead of clicking on the mouse or the return key never would have occurred to me.
Another thing I’ve noticed while working with Emma is that she has an amazing ability to see patterns. So, for example, if I show her a series of “words” but with only parts of the letters showing such as: _a_s, r_ _ _, _e_ _, _ _s_ and ask her to find the one that can be “eats” she will find the correct one immediately, less than a second, faster than I am able to. I am consistently amazed by this. It is in keeping with her ability to know instantly when a photograph is missing from her pile.
Emma’s box of photographs – over 200
The other day Emma was singing while shooshing around on her scooter. Richard was reading in the rocking chair, Merlin happily nestled in his lap. “You know what she’s doing right?” Richard said looking over his reading glasses at me.
“Yeah,” I said without looking up.
“She’s created her own carousel. Do you hear her? She’s singing all the songs they play on the carousel. And watch. She’s going around and around on her scooter in the same direction as the carousel.”
I stopped reading and watched and listened. Emma was currently singing “Georgy Girl” one of the many songs they play at the Central Park Carousel.
“I wonder if she’s singing the songs in the correct sequence,” he wondered out loud. “We’ll have to make a note of that next time we go.”
Emma riding on the Central Park Carousel
These are only a few examples of Emma’s brilliant mind. There are countless others.
We, as a society have a tendency to view ourselves and others with a critical eye. We are taught early on to look at our deficits and then do all we can to take corrective measures to make up for those deficits. I don’t believe this kind of thinking is helpful with children diagnosed with autism. The deficits pile up unbidden until that’s all we can see. Our children are routinely viewed as “less than” as we struggle to help them. I feel strongly a more balanced approach is necessary. Our children are often brilliant. If I approach Emma with this in mind, I am able to more fully help her, by focussing on her talents, on the things that are easy for her and using those assets to help her with the things that are more difficult. In addition I find I can learn a great deal from her.
For more on Emma’s journey through a childhood of autism, go to: www.EmmasHopeBook.com
Posted in Autism, Parenting, reading & writing
Tagged Autism, autism children, autistic, autistic children, autistic kids, IQ, IQ and autism, kids with autism, learning, learning disabilities, literacy, literacy and autism, living with autism, Parenting, parenting and autism, teaching, teaching autistic children, teaching special needs children
Since the family is now here, I’ve been getting up with Emma, so everyone else can sleep. Emma typically wakes by 6:30AM and often a bit earlier. Usually we go downstairs and sit together on the couch.
“Go to other pool?” Emma said this morning.
“Okay, but Joe just drove in from Denver last night, so maybe tomorrow.”
“Go to Glenwood pool tomorrow,” Emma said, nodding her head.
“Yeah. Maybe tomorrow. Joe’s probably pretty tired today.”
“Joe’s coming,” Emma replied.
“No. He’s here!” I said pointing upstairs. “He got in late last night. He’s sleeping,” I explained.
“Joe’s sleeping. Joe! Can we go to the other pool? I want to go to the Glenwood pool!”
“Okay, Em. We’ll ask Joe when he wakes up. How about doing our work in the study room?” I asked.
“Do study room in Mommy’s bed,” Emma said. Before I could answer she added, “No, not going to do study room in Mommy’s bed. We have to go to Mommy’s office just with Joe!”
“Exactly, Em. We have to show Joe what we’re doing.” I told her. “We have to wait until Joe wakes up.”
“We have to wait,” Emma said.
After Emma made her toast and ate it, she said, “Go see Joe.”
“We have to wait, Em. He’s tired. We need to let him sleep. Okay?”
“We have to wait,” Emma said sadly.
Eventually Joe appeared and Emma jumped up and down, “It’s Joe! Joe’s here! Go to study room with Joe?”
Emma and I are doing the next level of her literacy program. It’s a big step from what we’d been doing and it’s difficult for Emma. We watch a video and then do some computer work spelling one word. It is the same word repeated over and over in the story. Emma then must find the right letters on the keyboard to spell the word as well as find the word within the story. Emma does pretty well with all of that, but when we go to handwriting, it’s as though Emma has forgotten all her letters that we’ve been working on over the past few months.
The first day I found myself becoming frightened and by yesterday I felt abject terror. Terror at the idea she won’t be able to do this next level, frightened that it’s more than her mind can retain. I imagine she senses my fear in addition to her own anxiety and the whole thing snowballs, making it even more difficult for her. I am relieved Joe is here, so that he can work with her a few times. Perhaps his calm demeanor will have a positive effect on her, allowing her to relax enough that she can just concentrate on the work.
“Your fear is palpable,” Richard observed last night.
“I know it is,” I answered. “I am terrified she won’t be able to learn this. And then I go off to the next thought and the next, it’s horrible.”
And it is. But it’s my fear and has little to do with anything that is actually happening. I must learn to manage this fear as it’s getting in the way of Emma’s learning. I must compartmentalize it. My worries are not helping Emma. I say this in my head while I am working with her – these are my fears, they are not real, they are just thoughts. They do not mean anything, they are just fears. They are not real, they are not real.
Repeat as necessary.
Posted in Autism, literacy, Parenting
Tagged Autism, autism children, autistic, autistic children, children with special needs, Dr. Marion Blank, literacy, Parenting, reading, teaching, writing
Every morning, since we arrived in Aspen, Emma wakes up somewhere between 5:30 – 6:00AM and comes into my bedroom to snuggle and sing songs. At around 6:30AM I will say, “Ready to go to work?”
“One more minute,” is Emma’s usual response.
After a few minutes I’ll say, “C’mon. Let’s go!”
“Time to go to the study room!” Emma will say in a sing-songy voice.
Emma’s “study room” is the room adjoining my bedroom with a desk, my computer, a fax/scanner/copier machine and a twin bed, where one of the children often sleep if they don’t feel well. Though neither of them has chosen to sleep there for over a year now.
We go into Emma’s “study room” to work on writing individual letters, sequencing, and typing. The letter “s” is difficult for Emma and she still needs occasional wrist support, but otherwise her handwriting is coming along beautifully.
“Good!” she’ll say after she’s made a particularly good looking “e”.
“Beautiful!” I’ll agree.
“No,” she’ll say after trying to make a “c” but the lower part ended up below the line.
Sometimes she’ll self correct and I’ll say, “No. It’s okay Em. That’s a fine looking “t”.
“Okay,” she’ll say.
Typically we then move on to typing. I hold up a series of letters, which she then points to the corresponding letters on a sheet resembling the pad on a computer. Same formation, same positioning of letters except they are all in lower case, just like the letters I hold up. The letter “q” she confuses with a “p’, but other than that she’s doing incredibly well. Then we move onto the computer itself, which is much trickier as the letters are all in upper case and she must translate them from the lower case letters I hold up to the correct upper case letters on the keyboard pad of the computer.
Finally we end with a series of sequencing exercises using colored tiles and letter tiles. Sometimes I have to cover the letters or colored tiles and she must remember what they were. If they are random, say – red, white, yellow – she often can’t remember what they are. But if the colors are in a pattern – yellow, black, black, yellow – she almost always gets them right.
“No, no, no,” she said, yesterday when she put the wrong tiles down, after I covered the four tiles.
“Try again,” I said.
“There,” she said when I lifted the paper covering the four tiles and she saw she’d gotten them right.
As the sessions go on they become more difficult, until eventually we will move on to reading.
We almost always end our sessions with quietly sitting opposite each other for a few minutes. Emma calls this “deep breathing time.” Except we don’t breath deeply, we just sit, hands in our laps and stare into the mid distance. After we’ve sat for a few minutes, I’ll put my hands on Emma’s shoulders and say, “Good!” She always gives me a huge grin, before running off.
A year ago, I would have been dismayed, had I been able to peek into the future and seen Emma doing these exercises. Which just goes to show, I should never try to predict the future and never underestimate what she is capable of.
Posted in Autism, Parenting, reading & writing
Tagged Autism, autism and parenting, autism children, autistic children, Parenting, reading, teaching, writing
Emma's Hope Book 