Tag Archives: Special Education

Have Your Voice Heard!

Posted on December 5, 2016 by | 23 comments

For my Research and Writing English class this year I have to write a paper on a topic of my choice that weaves data and data analysis with factually based interpretation of that data. My research question for this paper is:  To what extent is it possible to compare the ways in which methods of communication are being taught to autistic students who cannot use spoken language to communicate their complex ideas?

Because many existing communication methods are underrepresented in most schools, I created a survey to find out what methods students use, what they are being taught to use and how successful each is.  Additionally I am curious to know whether a student’s school allows the communication method chosen by each student to be the most beneficial, and if not, how the student then communicates their complex thinking and knowledge.

This survey uses a google form and is completely anonymous.  You will not be asked for any contact information, your name or the name of your school.

Who I’m hoping will participate:

  • Anyone, anywhere in the world, who cannot use spoken language to convey their complex thoughts.
  • Anyone who cannot rely on spoken language most of the time.
  • If you are no longer in school you can fill the survey out by remembering your experience when in school.
  • If you are homeschooled or are doing a combination of online, non-traditional-school or other learning experiences, please consider participating.
  • Parents whose child/offspring fits the description above can fill out all factual questions and those questions that are subjective can choose “other” and explain you are a parent or give your opinion and explain that it is yours.

This is the link to my survey:  Survey

I hope you will add your voice and experience by participating in my survey.  I am glad if you do.

Have your voice heard!

Banding together with our typed words,

Emma NYC

emmaschool

That’s me, Emma, at school this morning.  Photo credit: Mom aka Ariane Zurcher

 

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Posted in Autism, Autistic communication, communication

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Can Speech Challenged Students Get an Appropriate Education?

Posted on February 9, 2016 by | 60 comments

     What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who cannot speak or who have limited speech would not immediately be labeled “intellectually disabled” and “low functioning”. We would live in a society that would embrace diversity and welcome all people, regardless of race, culture, religion, neurology or disability. Our education system mirrors our society and in both, we come up short.

     In New York City kids like me are not attending mainstream schools because we are believed to be unable to learn complex subject matter. I was sent to both public and private special education schools, specifically created for speaking and non-speaking autistic students and those believed to have emotional issues. Because I cannot voice my thoughts and so rely on favorite scripts, my spoken language causes people to assume my thinking is simple, I am unable to pay attention and cannot comprehend most of what is said to me. As a result, none of these schools presumed that I, or the other students, were competent and their curricula reflected this. At the private school I attended for six years, I was regularly asked to do simple equations such as 3 + 2 = ? When I said “two”, because that was the last number spoken and my mouth would not form the word “five”, my teachers believed I could not do basic math. It was the same with reading and something as simple as being asked to define the word “cup”. I clearly know what a cup is, but when I could not say it, I was marked as not knowing. This school used the same fairy tale, “Three Billy Goats Gruff”, for three years as the foundation of a “curriculum”. At another school, this time public, while my older brother was learning about World War II and writing essays on whether the United States should have dropped an atomic bomb on Hiroshima, my class was planting seeds in soil and asked what kinds of things were needed for the seed to take root and grow. When my classmates, many of whom could not speak at all, and I could not answer with the words “sunlight” and “water”, it was assumed we did not know the answers or understand the question. At another public school I spent months going over how many seconds are in a minute, minutes in an hour, hours in a day, but when I could not demonstrate that I understood either in writing or spoken language, it was believed I had no concept of time.

     There is no test that allows me to show the creative ways in which I learn. I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type. My mind is lightning fast. I can hear a song and then replay it note for note with my voice. I have an incredibly large capacity to listen, learn and feel. I listen to conversations around me regularly and often wish that some parents would appreciate their children more. The other day on the subway a Mom said, “Shut up, you’re being stupid!” to her son. The boy was silent and put his head down. The Mom proceeded to play a game on her phone. I have learned that everyone is delicate. In that moment my body felt tremendous sadness. I see patterns in unrelated things, such as I am able to notice every article of clothing that someone wears on a given day. People’s attitudes are reflected in their choice of clothing. When the same clothes are worn over and over, I have the feeling the wearer is stuck. People’s self-confidence increases when wearing new clothing. My expansive vocabulary is impressive. I’ve listened to how people put words together my entire life. As I have made sense of the words used, I have been able to understand their meaning, though I am unable to ask for definitions. I notice people’s sadness, even when they are smiling. I almost feel like I am violating someone because I can see inside of them and know their feelings. I’m told I use the written word in unusual and interesting ways. I have been published in magazines and blogs. I give presentations around the country on autism and gave the keynote address at an autism conference this past fall. I am co-directing a documentary, Unspoken, about my life and being autistic and I hope, one day, to be a performer.

      The best education I’ve received to date in a school is at a private non special education school, where none of the teachers or administration has been given “training” in autism or what that supposedly means. They do not believe I cannot do things the other students are able to do. In fact, though I am just fourteen-years old and technically should be in eighth grade, I am doing upper level work. I am treated respectfully by teachers and students alike. My typing is slow, but the class waits for me and gives me a chance to express myself. During a recent Socratic seminar where the students were expected to speak on the book we had just finished, everyone waited for me to type my thoughts and gave me time to have my thoughts on an earlier point, read later. In my theater class the teacher began the semester with non-speaking work. We learned about mime, silent theater and the importance and impact of physicality while performing. I have been asked for what I need in order to excel, and accommodations have been made, I know, but I hope and believe that I am not the only one benefitting from my presence at such a terrific school.

     There is a saying in the disabilities community, “Nothing about us, without us.” A complete rethinking about autism and autistic neurology is needed if special education schools or any schools are going to educate those of us who think differently. Believing in the potential of all students is not on any test. Presuming that each and every student, whether they can speak or not, can and will eventually learn given the necessary supports and encouragement is not commonly believed, but it should be. Wouldn’t it be great if autistic people’s ideas were included in designing curriculum and the tests that are meant to evaluate them. Isn’t that what you would want if you were like me?

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Posted in Autism, communication, Education

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Education

Posted on May 13, 2014 by | 37 comments

Yesterday I wrote a post, Your Child’s Been Diagnosed.  Now What?  There are so many things to add.  But something I wondered often during those early years was  – what good is a diagnosis if the “interventions” the professionals suggest and say will help, do not?  Now this is not everyone’s story, but it is ours.  All the recommended “interventions” did little, if anything, to actually help her.  In fact, I would argue that some of the interventions we agreed to, actually harmed her self-esteem.  And the general rhetoric, disguised as factual information, surrounding autism, encouraged her to feel damaged and at fault for the suffering of others.  No child should feel they are the cause of other’s pain and suffering.  And yet, so many do.

Once we began looking for schools that might be a good fit, we were even more horrified.  The choices were not – which one is best? – but became – which one will not harm her?  This shouldn’t be a parent’s guiding question when looking at schools, but for us, it was.  Will the staff be kind to her?  Will they be patient?  Questions like – will she learn?  Will she be taught science, math, english, social studies?  Those questions quickly gave way to – will she be harmed?  Are cameras monitoring what goes on in the classrooms and hallways?   Do they use isolation rooms?  Do they allow teachers to use restraints?  The best case scenario became less about education and more about physical safety and finding a place that did not harm or try to force compliance.

Academics were stripped down as it was “shown” that she could not understand basic concepts.  Because she could not read aloud, she was given picture books.  Because she could not answer the questions asked, the questions were simplified and simplified more and more and more until it was concluded she didn’t understand.  Because it was determined she could not understand a simple story about a boy and his dog going on a trip to visit his Grandmother, she was given less “complex” stories.  She was given “sight” words that were repeated for months and months, even years.  Billy Goat’s Gruff became the center piece for a curriculum that continued for three years, despite our disbelief and protests.  “Oh but we examine all the various characters in the story,” we were assured.  “THREE YEARS??” we responded.  “For three years?”  “Yes,” we were told with pitying looks and the hubris and bravado I’ve come to recognize from those who are convinced they “know” and understand “autism” and therefore my daughter.

Some of the worst offenders are those who have dedicated their lives to autism.  Those who are so sure they know, and as a result are no longer curious or interested in learning more.  Those are the people who are asked to give presentations at Autism Conferences, they are the ones who write books, that parents, not knowing any better, buy.  They are the ones we listen to and slowly as their voices are the loudest and most plentiful, we begin to doubt our instincts, we begin to soften our protests, we begin, slowly, slowly over time, to believe them.  Our ideas about our child are whittled away.  Our instincts are pushed aside to allow for those who know better, who have been doing this for “twenty years,” who have worked with “this population” and who, from having spent decades among children just like mine, know things I cannot possibly grasp or understand.  (This, by no means, describes everyone, but it does accurately describe a great many, and sadly, often those who were in a position with the most power.)

We parents are told to see our children for what they are: Intellectually impaired, socially inept, incapable, lacking and unable to understand the most basic concepts.  My child, as a result was shuttled off to learn how to tie her shoe laces and wash her face and hands.  While life skills are certainly important they should not take the place of academics.  So many of us are consoled with the idea that at least our child will be able to dress themselves, or not…  in which case we envy those parents who have children who can.  Our focus turns from philosophy, an exchange of ideas, history, english, poetry, literature, science, social studies, math and geography, to making sure our child can brush their teeth.  Until one is accomplished, it is thought, the other cannot be introduced.  A child who cannot dress themselves, surely cannot be introduced to Kant or Socrates or a poem by Yeats.

“Hey Emma, I’m curious, how is it that you know about WWII and Nazi Germany?”

“I hear you, Nic, and Daddy discussing,” Emma wrote over the weekend.

“Do you think it was right for Harry Truman to drop the bomb on Hiroshima?” my son asked.

“I have to learn more to say one way or the other,” Emma responded.

“Do you want to hear some arguments for and against the bombing of Nagasaki and Hiroshima?” N. asked.

“Yes, I can better understand using the bomb if you tell me more,” Emma wrote.

There is so much more to say…

Emma struck this pose while waiting for the school bus - May, 2014

Emma struck this pose while waiting for the school bus – May, 2014

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Posted in Autism, Education, Parenting

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Autism Graphics

Posted on April 25, 2014 by | 66 comments

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

Emma ~ 2010

Related Posts:
Unstrange Mind – Schools Supporting the Idea that…

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Posted in Autism, autism experts, Parenting

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“Picture Day Moments”

Posted on March 4, 2014 by | 72 comments

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

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

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

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

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

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

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

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

Picture Day ~ 2008

Picture Day ~ 2008

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Emma’s Letter to Her Teachers

Posted on January 9, 2014 by | 39 comments

This is a letter Emma wrote yesterday to her teachers.

Dear ____________________,

I would like to teach you how to use a stencil board so that I can show you how much I know and so we can discuss what you are teaching me in class.

I want to learn both syntax and style of diverse writers.  Poetry and prose both interest me.  I love to write stories and welcome the opportunity to do so.

You try to teach me, but not in a way that I can learn.  Try to learn what my mother has learned from Soma and change how you think about autism.

Addition and subtraction are fun, but I have been doing that for many years and numbers are easy for me to understand.  It is boring to do the same thing over and over all the time.

I do not like school and I wish I could go to a regular school where I was treated like other kids.

Sincerely,

Emma

After Emma wrote this letter I sat with my husband Richard, clutching the three pages it took to contain these words that Emma wrote, pointing to one letter at a time on her laminated letter board.  I asked Emma if I had her permission to read her words aloud to her dad, she nodded yes and then said out loud, “on the blog.”

Education for our kids, whatever their neurology, is something every parent worries about.  Our schools are buckling under the weight of mismanagement, bureaucracy, out dated and irrelevant standardized test requirements, politics, and the diverse needs of our children, make any one-size-fits-all method of teaching impossible.

I don’t have any answers, but I intend to get some.

To anyone who has successfully gotten their non-speaking child (or a child like Emma who is able to speak, but says things they do not intend) into a “regular” school, please contact me and let me know how you did it.  Does your child have a one-on-one aide?  Did you train the aide yourself?  Do you do RPM?  Did the school work with you?  If they didn’t, what did you do instead?  Any and all experiences are welcome.  You can also contact me by email:  emmashopeblog@gmail.com.

A Session With Soma

A Session With Soma

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A Witness to Her Own IEP Meeting

Posted on February 26, 2013 by | 31 comments

This morning we went to Em’s IEP meeting…  with Emma.  I wrote about this ‘here‘ last week.  It was the first time we’ve done this and while Em chose not to add any goals when asked at several points during the meeting, she did express interest in speaking with me during our typing session together, later.  So I intend to talk with her about what was covered and see what she might like to add or discuss.  Most importantly, she was there to witness and hear the thoughts others have regarding her academic goals for the coming year.

At one point she began parroting every word I said.  It was like being in an echo chamber.  I looked over at her and it reminded me of when I was a kid and my siblings and I would do this to make each other laugh.  I do not believe this was the reason Em was doing this however.   Both Richard and I felt she was trying hard to show that she was listening and an active participant.   A few times when one of us directly asked her  whether she agreed or had anything to add she scripted, “Bertie kitty!  You have to get off the table.”  Or some other equally, (seemingly) unrelated script about my old cat who died five years ago.  I kept reminding myself that Em’s language default is a set of scripts.  The scripts may or may not be related to the conversation, but are most definitely an indication of intent and interest in being part of the conversation.

For almost an hour Em sat in her favorite chair during the meeting.  Not once did she try to get up and go somewhere else.  Not once did she indicate she wanted to leave.  Not once did she say anything to show upset or stress.  I was proud of her.  And I was glad she was there, not because she added any specific goals to the IEP, she did not, but because she was present and witness to a conversation regarding the coming year’s goals for her.   And her presence matters and changes the conversation, even if just slightly, it makes a difference.  As Richard and I continue to move forward in our journey to give our daughter the tools she needs to help us help her, this is an important first step.  I had no expectations going into this meeting regarding her input.  I had no idea what would happen or if she would want to leave.  All I knew was that I gave her the choice to come or to stay with her class and she asked to be present.  So she was and for that I am very grateful.

More will be revealed…

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Posted in Autism, IEP Meeting, Individualized Education Plan

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Goals and IEP Meetings

Posted on February 22, 2013 by | 30 comments

My goals for my daughter have completely changed since she was first diagnosed with Autism more than nine years ago.  I have been thinking about goals a great deal because her IEP (Individualized Education Plan) meeting is coming up and for those of you familiar with IEP meetings, it’s all about goals, both long-term and short-term.  The parent’s goals, the teacher’s and therapist’s goals, everyone’s goals are discussed and written down.  Except for Emma’s.  What are Emma’s goals for herself?  For those who have children with either spoken or typed language this is an easy enough question to ask.  For those of us whose children do not it gets a bit more complicated.  Still, I plan to ask, even if I do not get an answer, whether verbally or typed, I will ask and I plan to talk to her about her IEP and what that means as well.  I may even type out some of the goals we are thinking about and ask her if she agrees with them.

I have to admit that sometimes when I speak to Emma about things, whether it’s about privacy, our bodies and bodily functions, the power of saying no, the importance of self and self-determination, or something like explaining what is going to happen over the weekend or asking her what her goals are at an IEP meeting, I catch myself wondering if she really understands.  What I have learned, what I continually remind myself is that it’s okay to wonder, it’s okay to feel all those feelings, but it’s not okay to act or behave as though she does not understand.  I have to speak to her as though she does understand, even when I don’t know that she does.  In the end I have to do this, because to believe that she can’t/ won’t/ doesn’t understand and to be wrong is a risk I cannot take.

 

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An Interview With an Autistic Teacher Who Teaches Autistic Students

Posted on February 4, 2013 by | 17 comments

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:

  1. That my students cannot possibly be capable of having control over (or a meaningful say in) what will happen with their lives.
  2. That the fact that most of my students may never be fully independent (living alone, working full-time) means that we should not bother teaching them community living and vocational skills.
  3. That my students are unpredictable or dangerous.
  4. That a student who may exhibit challenging behavior in the school environment shouldn’t be allowed in the community because he might exhibit the same challenging behavior.  (This one really makes me angry, because it doesn’t teach the kid anything useful. Give me appropriate staffing to handle the behavior; don’t penalize the kid.)
  5. That my students should be pitied.

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.

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A First Day And Life Continues..

Posted on September 7, 2012 by | 44 comments

Bounce, bounce, twirl!  Bounce, bounce, twirl!  I’d provide a visual, but I don’t have one, so you’re going to have to take my word for it…

Yesterday was Emma’s first day at her new school.  Emma was scared and anxious.  I was scared and anxious.  Every time I tried to do the breathing exercises we’ve been practicing, Emma begged me to stop, “No Mommy.  I don’t want to do breaths!”  So I did them quietly to myself hoping she wouldn’t notice.  We did exactly what we planned.  I took her to school.  I brought her up to her classroom where she joined three other children, two non-speaking and one verbal.  I stayed with her longer than I should have, but seated across the room out of her line of vision.  Her head teacher, who’s been teaching for more than ten years, and special ed for six of those ten, was kind, respectful yet reassuringly authoritative without seeming intimidating.  I set the timer for three minutes, gave it to Em and told her I’d leave when the timer went off.  She said, “Go sit with other kids when Mommy leaves” and I cursed myself for not having set the timer for 10 seconds, at the same time congratulating myself that I hadn’t set it for 10 minutes.  But that was the kind of day it was.  A day of juggling opposites.  Emma’s favorite book kept up a steady patter in my head…  Matman stands, matman sits, let’s say opposites!  Staaaaaannnndddd!   Siiiiittttt!  Staaaaaannnnndddd!  Siiiittttt!

And in between matman’s curious chant, I watched and listened.  I could see Emma relaxing.  I could see her watching.  She began to join in.  The timer beeped, I stood up, Emma walked over to the table to join her peers, just as we’d mapped out and I left.  When I returned to have lunch with her she was happy and laughing.  As we sat in the cafeteria with her teacher, aides and other kids I mentioned the “letter” I’d written.  I said, “I hope you didn’t feel it was condescending, I didn’t mean it…” and one of the teacher’s aides interrupted me and said, “Not at all!”  She then went on to tell me she’d gotten out a highlighter and made notes.  She and the head teacher reassured me that they appreciated it and credited it with the success of Emma’s first day.  I was relieved and grateful for their kindness.  When Emma was finished with lunch, she turned to me and said, “Go with Mommy to the big carousel?”  This was what I’d promised and I nodded yes.  As we got up to leave, Emma turned, said, “good-bye” and then said each person’s name and blew each a kiss (the ultimate compliment from Emma and not something she usually does.)  It was all I could do not to openly weep with relief.

There’s a great deal of talk about us parents.  How we feel, what we think, our emotional state, our perceptions, our understanding of events as they occur, what we think our child may or may not be feeling, thinking, understanding.  All of it is through the filter of our own experiences, what we’ve learned or been taught.  It takes a leap to realize what we think we know or believe may be incorrect.  That’s a hard concept to digest.  It’s taken me eight years and there will always be more for me to learn and understand, I’m still very much at the beginning of this journey.  This fall will mark eight years since Em’s diagnosis.  Eight years ago when I believed I knew things about my daughter, only to learn how very wrong I was.

I think I understand and then find I really don’t.  I don’t “own” Emma, she isn’t “mine” in the sense that she is not my possession.  She is a being in her own right, with her own ideas, opinions and thoughts.  I have ideas about what constitutes a quality of life, I have opinions about other people I meet, I view their lives through the lens of my life, my hopes and dreams.  It’s easy to fall into the idea that my views are the correct views, but I know how often I am incorrect.

I began this blog to record Emma’s journey, but have found I am increasingly uncomfortable making the assumptions necessary to actually do that.  In recent months I see this more accurately as a record of my journey.  I find myself not wanting to talk about Emma as much and when I do, I ask myself is she okay with what I’m writing?  I have her photo splattered all over the internet and while I am perfectly fine divulging the gory, messy details of my past in a public way, I haven’t given Emma the choice.  I’ve just done it.  I don’t know where to go from here.  Just because she often cannot communicate her ideas and opinions doesn’t mean she doesn’t have any.  I know now how incorrect this assumption is.  I’ve asked her about this blog.  I’ve shown it to her.  A few times she’s asked me to read her a post I’ve written.  I’ve asked her which photo is okay to post, but just because she points to one, doesn’t necessarily mean it’s okay.  It’s a dilemma and one I am not clear on, though increasingly I’m uncomfortable with the choices I’ve made.

Someone once said to me, “We give birth, the umbilical cord is cut and from that moment until we die our job is to learn how to let go.”  The timer hasn’t beeped yet, but I know it’s ticking.

Chalk Art on 7th Avenue – “Happiness”

“Step Inside”

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Emma’s New String And A New School

Posted on August 15, 2012 by | 23 comments

Emma will be attending a new school this fall.  We were given a placement by the Department of Education mid June that was not over an hour from our home. This new school seems to understand the concept of sensory issues and needs, or at least they’ve heard of the idea and appear willing to consider that this is important to Emma.  They seem interested in my desire to be involved.  We will be working together on a transition.  I plan to meet with her new teachers and the assistant principal.  I will photograph all of them as well as the interior and exterior of the school to put in a book that Emma can look at prior to her first day.

The school has a large gymnasium and a huge auditorium with a stage.  There’s a roof playground and a little area filled with books.  It’s a special education school within a larger “regular” public school.  They seem interested in having Emma do at least some things, like PE, with the kids from the larger school, so she’s not completely segregated out.  It’s by no means ideal, but we have yet to visit a school, private or public, that is.

I took Emma to visit the school in July.  She was anxious, kept saying, “No, I don’t like the new school.  I don’t want to go to new school.”  We talked about how new things are scary.  I told her that at this school she would be able to go swimming in the pool across the street once a week and that there would be new teachers and children.  I could see how anxious she was, just visiting.  I felt the tightness in my heart and stomach.  That feeling hasn’t left me.  I am as frightened as Emma.  This is a big change.  It is an enormous question mark.  Emma has been dealing with her anxiety by saying goodbye to all her old teachers and classmates.  “Lauren is gone.  Charlie is gone.  Soufien is gone.  Rachel J. is gone…” Emma will go through the lengthy list and then always ends with, “Emma goes to a new school!”  I’ve asked her whether she’d like to visit her old school to say goodbye, she is adamant that she does not.  I’ve asked if she’d like to see some of her old friends, she has shaken her head no.

Emma has a new string that she loves.  I’ve written about her string before.  Unlike her scrap of blanket (cokie) which works like a sedative and makes her sleepy, her string seems to help her focus.  She twirls it or will hold it in her hand as she runs, jumps on the trampoline and plays.  Since we’ve been in Aspen she has lost her string three times now, leading to shrieks of terror and screams of “You lost it.  You cannot throw it.  Have to look.  Mommy!  I need help!”  And then tears.  Lots of terrified crying.  Each time we’ve turned the house upside down and eventually found it, but it’s been traumatic for all of us.  This last time it went missing, Richard and I began to think we’d have to place limits on it to ensure it didn’t get lost.  A couple of friends suggested alternate strings, a kind of backup string.  So I asked Em if she’d like to find an “outdoor” string.  She easily chose a long piece of purple ribbon.  She cheerfully took it out with her when we went for our morning ride on the 4-wheeler yesterday.

It occurred to me then that she could have a number of alternate strings.  I thought about her new school and realized she could have a special “school” string too.  I asked her if she liked this idea and she nodded her head vigorously.  “How about a school string and a Saturday string, a back up string and we can find another indoor string,” I said.  “Yes!” Emma replied, clasping her new purple string in her hand as she got on the 4-wheeler.

At her old school several years ago one of her teachers introduced a school “cokie” to detrimental effect.  Emma would sit in the corner with her scrap zoning out.  Over the years her various teachers tried to curtail her use, put limits on her cokie, but nothing they did worked.  Every few months I would get a call from her teacher describing melt downs, her inability to attend, her desire to have it with her all the time.  Each time my heart ached for her as I put the phone down knowing I’d been unable to help alleviate the situation.  At her new school we are hoping by providing her with a school string some of her anxiety may be mitigated. I am hoping she does not latch on to a “school cokie” I am praying some well-meaning teacher does not introduce her to one.  We will see.  In the meantime if any of you have suggestions about how to help us help her with this transition – let loose!

Emma’s Cokie

Emma’s old string

Emma’s new string

Emma’s purple string

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