Tag Archives: Stimming

Dreams, Love, Loss and Gratitude

I had a dream last night that unsettled me.  I dreamt that I was standing with some other people and saw a woman with her young son.  He was small, maybe five years old at most.  I was fascinated because he was holding what looked to be a “string” like Emma has, but much smaller.  It was proportionately the same size as Em’s given how little he was.  I turned away because Em was saying something to me and when I turned back around the mother and her son had walked away.  On the ground was the little boy’s string.  So I picked it up and ran after them.  As I approached the mother I held out the tiny furl of string and said, “I think this is your son’s.  I wouldn’t want him to lose it.”  The mother stared at me and said, “What is that thing?”

I said, “Oh!  I think it’s maybe his string.  My daughter…”  but before I could finish she interrupted me and said, “That isn’t ours.  It’s garbage.”  I felt as though I had been punched in the stomach.  And then she turned away, carrying her son who gazed at me wordlessly over her shoulder.  I stood there watching them walk away from me and felt stunned and confused.  I wondered if maybe I’d somehow misunderstood and that perhaps it wasn’t important to her child.  And then I felt ashamed for having approached them and said anything.  Ashamed that I’d assumed it was important because my daughter’s string is so important to her.  Ashamed too, that what is considered beloved and of value to my daughter is seen as garbage by another.  I stood there feeling these things and then I turned to find my daughter was no where in sight.  I felt that horrible surge of panic and adrenaline as I began going through the various scenarios of where she could be or what might have happened to her.

When I woke up I wanted to cry I felt such unspeakable sadness.  All morning that dream stayed with me like a shadow.  All morning I have felt fragile and on edge.  And then I read my friend Gareeth’s latest blog post.  You can read it ‘here‘.  It is a daughter’s moving and powerful tribute to her mother.  I cried as I read because it is so beautifully written, but also because it is about profound loss as well as gratitude for what wasn’t lost.  Loss of time, loss of relationships, loss of missed opportunities…  and as I read I realized that dream was also about loss and judgement and denial and how we harm those we love.  And now as I sit here in my studio looking out at the bumper to bumper traffic on the 59th Street bridge, the rain pours down.  I can hear drops splattering the top of the air conditioner that juts out of one of my studio windows in irregular plops and pings.  Rain drops stream down the windows obscuring my view and I am surprised that I hear no angry honking given how treacherous the traffic is, just the occasional siren can be heard in the far distance.

I feel so grateful to all those people driving their cars who aren’t honking at each other.  I feel so grateful that though the traffic is at a crawl, people are being patient and it gives me hope.  Let me be patient today with every person I come into contact with.  Let me give myself the same respect and patience.  Let me be aware and kind and respectful to others today.  Let me feel gratitude for all that I have.  Let me feel my feelings and not behave as though my feelings are facts.  But most of all, let me know the difference.

Em’s string – February, 2013

Em's string

 

An Interview With an Autistic Teacher Who Teaches Autistic Students

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.

A Letter To My Daughter’s Teacher

*I’ve never removed a post before.  But I couldn’t get away from the creepy feeling the original post was giving me.  I have kept much of the original content, but rephrased it so that I’m not speaking as though I were my daughter, which I have no right to do, and am instead speaking as her mother, which I am.

My daughter, Emma will be in your class this year.  A few days ago, Emma told me she was “scared to go to new school.”  Emma loved her teachers and friends from her old school.  So I want to introduce you to her.  I cannot speak for Emma, I cannot know if everything I write here is completely accurate, but these are things that I have learned over the years, things that are specific to Emma and that may be helpful, at least that is my hope.

Sometimes Emma does not look at you when you are speaking to her, but that doesn’t mean she doesn’t hear you.  Her hearing is excellent.  She may not know how to process what you’ve said or she may not know what is expected of her.  Often if you ask Emma a question, especially if it’s a question she knows the answer to she either won’t answer or will say something nonsensical because she isn’t sure what’s expected of her or why the question has been asked.  Sometimes people get nervous and don’t know what to say, so they’ll ask, “Oh Emma, that’s a pretty dress.  What are you wearing?”  or  “What color is that?”  These are questions that aren’t being asked for any real purpose or they are testing questions.  Typically these are the kinds of questions Emma will not answer.

Change is difficult for all of us and Emma is no exception.  Having a written or picture schedule for the day and week will reduce her anxiety.  Like everyone, Emma really appreciates having a say in what happens throughout the day.  Whenever appropriate allowing her to set a timer for a one, two or five-minute warning before a change in activity will go a long way in helping her do what she needs to prepare herself.   Usually Emma will go along with any change if she’s given sufficient warning.

General Disposition:

Emma loves people.  She is gregarious.  Her fall back position is one of happiness.  She is also very sensitive.  She can tell if someone is upset, stressed or angry and can become easily overwhelmed by those feelings.

 Particularly good at:

Emma is terrific at leading others.  She can be extremely persuasive and is a great negotiator.    Her negotiating skills are wonderful for math and science and her leadership skills are wonderful motivators.

 LOVES:

Emma loves music, dancing, being on stage in front of an audience.  Give Em a microphone and she will sing and dance.  She loves “talent shows.”  She loves any game involving running, swimming, holding her breath under water, laughing and being silly.  She loves playing versions of “Duck, duck, goose” or as Emma would say, “Raincoat, raincoat, umbrella!”  Musical chairs is another favorite, dance parties, hide and seek, dressing up, bouncing, swinging and going to any playground.  Emma is very athletic and very girly.  She likes cooking and while she won’t eat most of what she cooks, unless they’re pancakes, she will enjoy the opportunity to cook.

Does NOT like:

Emma gets upset if she is told not to do something she has just done.  Example:  “You cannot shout!” after she has just shouted is difficult for her.  Obviously she CAN shout, she just did, with you right there watching.  Telling her she “can’t” is not true and it’s confusing.  Instead say, “You mustn’t shout.” Then in a voice that models what you’d like you can say, “Here is how you can speak instead.”  By doing that, you are helping to give her other choices.  If she is not allowed to do something, be sure to tell her what she can do as an alternative.

Academics:

Emma is fairly new to all academics.  Within the past year she has learned to form the letters of the alphabet and is now reading, writing and typing at a 1st – 2nd grade level, likewise with math.   Emma loves the Hubble Imax movie and her favorite museum is the American Natural History Museum.  She is showing interest in learning about our world, the ocean, the moon, other planets and the universe.  She told me last night that she doesn’t want to be an astronaut though, she said she wanted to be a “singer on the stage!”

Needs extra help:

Emma resists academics.  They are hard for her and she becomes upset when she makes a mistake.  She doesn’t like getting anything wrong.  But if you help her succeed, she will flourish.  If she is reading and doesn’t know a word, give it 15 seconds or so to see if she can work it out on her own, (don’t say “sound it out” or “try again” because she didn’t learn to read phonetically and while she is able to sound some words out on her own, it won’t help her with all those exceptions like limb and thought.)   Emma has a strong desire to learn and an even stronger desire to do things independently.  With your help, she can and will succeed.

Frustration and Signs to watch for:

Emma gets a look of panic on her face.  She may begin breathing with short sharp intakes and she will often talk to herself in a high-pitched questioning voice laced with anxiety. When Emma is overwhelmed she may shut down and withdraw.  She may begin scripting, using set phrases she’s heard. Those scripts may be in context with what’s going on or their connection may not be clear to you, but that doesn’t mean there is no connection, it just means you don’t understand or know what it is.  Emma often has trouble processing her feelings and the feelings of others.  Sometimes she needs help identifying those feelings, just as we all do.  Sometimes she will start repeating things other teachers have said to her in the past in a scolding tone, such as, “No Emma!  You may not __________.  If you ____________ we will take ________________ away!”  When Emma is overwhelmed she has to rely on her scripts as all other words have left her. Try to listen even if the words seem meaningless, she is trying to communicate her feelings of distress to you.  Sometimes she might say, “You have to ask for help!”  This is what she says when she needs help, but sadly this can confuse those who do not know Emma well.  She might also say, “Do you want to go swimming?”  Which means she really, really wants to go swimming.  If you show her on the schedule when she’ll be able to go she will usually calm down.

It’s too late, the storm has hit!

This is not the time to engage in a power struggle.  Emma is not trying to manipulate you or upset anyone.  She is simply expressing her frustration in the only way she knows to.  Sometimes if she’s very upset she will bite herself or punch herself, usually on the hand or arm, sometimes if things are very bad, she will punch herself in the face.  Do not exacerbate this challenging time by raising your voice or telling her “You cannot hit!”  or “You cannot bite!”  or even “We don’t bite.”  (See Does not like paragraph above) Restraining her in an attempt to stop her will not prove helpful either.   Emma bites or hits herself because the feelings of frustration are overwhelming her.  The pain she causes herself by biting or hitting is within her control and is therefore preferable.  It things have escalated to the point where Emma is hurting herself, everyone must try to understand what has happened before things became this derailed and try to prevent them.  Sometimes it isn’t possible, but Emma is trying to cope as best she can.  When she is calmer you can work on helping her find alternate ways to cope.

What helps you when you feel overwhelmed?  What things do you do when you feel anxious, scared or upset and no longer feel you’re able to function?  Maybe the things that work for you will help Emma too.  Remember, be patient.  Showing Emma once or twice will not mean she’s learned, she will likely need to be shown numerous times.  Often there is a sensorial component to her upset.  She is overwhelmed with feelings or a sensation or too many sensations.  She may be tired or hungry, too hot, cold or thirsty.  Sometimes a sensory break will do wonders to restore her equilibrium.

Strategies that work well:

Make it into a game!  Music can be incorporated into just about any activity and can change anything.  High affect and silliness can make something that feels difficult seem fun!

Humor:

Emma loves anything silly and ridiculous.  Silly faces, silly dances, playful interactions, games!  She has specific jokes she likes to play with specific people.   Emma loves to laugh.  She loves to make up word games.  She enjoys taking a word like “uncle” and changing it to “Jungle.”  She will happily tell you that she has a “Jungle Andy and a Jungle Victor.”  Come up with silly word games and Emma will join in with glee.

Things that have a tendency to backfire?

If you say, “You have to do ________________.  If you don’t, I’m going to take __________________ away” will make her upset and anxious.  She will have a hard time concentrating because she will worry about having something she wants taken from her.  Instead say, “You can ______________, but first you need to __________________.”  That way Emma can concentrate on having/doing something she loves as opposed to taking something away.

Emma’s String:

 Emma has a string that she loves.  Please do not take away her string or use it as a form of punishment.  Her string helps her focus and it makes her feel safe.  If you take it away or threaten to she will become completely overwhelmed.  Sometimes, when she is writing or typing and needs both hands to do so, you can ask her to set her string near her or in her lap.  If you allow her to control where she puts her string she will feel safe enough to concentrate and do her work.  Also (a little secret) if you get some string or ribbon and copy her movements in a playful way, you might see and feel for yourself how wonderful it can be and Emma will be delighted that someone wanted to interact with her in a way that she loves.

Food:

Emma does not have any allergies or foods she cannot eat.  However she likes to eat the same food everyday.  Some food looks, tastes and smells strange to Emma.  Please do not make her eat anything she isn’t interested in eating.  Please do not tell her she must finish something in order to have something else.  If Emma shows interest in something someone else has or is eating and it’s appropriate, do allow her to smell, lick, taste or eat it if she wants to.  And please do tell me so that I can find whatever it is and offer it to her at home too.  We will pack Emma’s lunch everyday.

One last thing:

 Assume competence and respect Emma’s process.   Emma can and does learn.  She may take longer or less time than another child, but she will learn.  She is extremely independent.  Show her, help her, let her.   You are her role model.  Emma has dreams, just as we all do.  You can help her achieve those dreams by believing in her.

 I am available to talk, discuss and strategize.  I am here to help in any way that I can.  Nothing is more important to me than my daughter.  Please keep in touch with me.  Please let me help in any way that I can.  There is no detail about Emma’s day that is too small.  Do not hesitate in emailing me _____________ or calling  _____________. 

 Thank you so much,

Ariane

Emma performing at her old school


*The above “letter” was inspired by a form letter Ann sent me by Jene Aviram© http://www.nlconcepts.com

Running with Mermaids

When Emma was a toddler she had a mermaid finger puppet.  It had long black hair, sported a blue bikini top and had a blue sequined tail.  At the time, I thought it was the first of what would be many dolls.  I loved dolls when I was little.  My favorite doll was named Maribelle.    Her left hand, the victim of my rage when I was four and hacked off three of her fingers with a pair of pruning shears was a reminder of anger gone awry.  I immediately regretted my actions and attempted to glue her fingers back on.  Crazy glue was not the common item found in every tool box as it is today.  My options were Elmer’s and rubber cement, neither of which could repair the damage.  I then tried tape with no better results.  At some point the fingers were lost or I threw them away, I can no longer remember.  Mirabelle’s fingers, while physically gone, are forever etched in my conscience, an impulsive act I could not undo.  Still, I loved Mirabelle and though I eventually moved on to a series of other baby dolls, little girl dolls and finally Barbie dolls, my first love was Mirabelle.  All these years later Maribelle resides in the blue and silver striped trunk she originally came in, now in an upstairs closet  in my mother’s house.  I have never been able to part with her, my thinking was that if I had a daughter, perhaps she would one day want to have her.

When Emma showed interest in the mermaid, I had high hopes for Mirabelle’s return.  Only, it turns out, Emma’s mermaid did not hold the same sort of feelings as Mirabelle had for me.  The mermaid was the beginning of a series of objects that Emma was fascinated by.  The item that eventually replaced Emma’s mermaid was The Corpse Bride from the Tim Burton movie with the same name.  Then it was Jessie from Toy Story and after that a long stick picked up from the playground.  From there she gravitated to a series of sticks, balloon strings and her current favorite: packing string.  The packing string is a work in progress, held together in the middle with masking tape, then scotch tape, which was then covered in reinforced packing tape and finally covered in turquoise duct tape.  When we were at Granma’s house, Emma covered the turquoise duct tape in masking tape she found in a drawer in my mother’s kitchen.  When we returned home, Emma covered the masking tape with yet another layer of the turquoise duct tape.  It has a certain heft to it and looks like this.

I know a little more than I did when Emma first ran back and forth from our front door through the house and back to the front door with the finger puppet held between her thumb and index finger, the mermaid’s black hair swinging to and fro as she ran.  Today Emma holds her “string” as we call it, in her hand while dancing.  Her string serves as part security object, part stim object, part something else that I am still trying to figure out.  ”An attachment to peculiar objects…” is one of many characteristics of autism, but when Emma was little, it was just a mermaid.  Who knew?

To read my most recent Huffington Post piece, click ‘here.’

Vestibular & Proprioceptive Movement

From the moment Emma could walk (14 months – she went from crawling to running) she would do what we used to call, Emma’s circuit training.  This was before we knew she was autistic and didn’t realize that this was Emma’s very specific way of trying to get the kind of vestibular and proprioceptive movement she so craved.  In fact, it all looked so “normal” or “not autistic” that it took me a long time to understand this was a kind of stimming.  For more on stimming from previous posts, go to:  Compulsions & The Velcro Strip.

I was always trying to find something that might engage Emma.  When we were at the toy store, I found a mermaid finger puppet with long black hair and a blue sequined tail.  I brought it home and to my delight and surprise Emma grabbed hold of it and ran from the living room down the hallway to the front door.  When she reached the front door she swiveled around and raced back to the living room.  This went on for quite sometime and I was so excited I’d found a toy that she liked, I didn’t spend too much time wondering at the peculiarity of her “play”.  A few weeks later I found another mermaid finger puppet and a doll’s stroller and brought both home, only to have Emma completely ignore the new blonde mermaid finger puppet, but she loved the baby stroller.

Emma’s favorite circuit training, which was also how we came to call it that, was the obstacle course she would do in our living room, over and over and over and over again.  She ran from the living room couch into the TV area, jumped up on the couch there, crawled through a tunnel we had set up, ran into the kitchen, around the butcher block island, down the hall to the front door and back again.  Even better was to do all of this with the baby stroller, which she pushed along her route, knocking things over as she sped along.  I wasn’t alarmed by her circuit training, after all, Emma’s older neuro-typical brother, Nic used to spin around until he became so dizzy he’d fall down.  Kids do these things, right?  Right?!

When I took the children to the playground, Emma wanted to go on the swings for as long as she could before the lines became so long she had to get off to give another child the chance to swing, at which point she would get off only to get back in line. She wasn’t much interested in playing with other children.  She wanted, needed to swing.  At her special education school she is allowed to go to the sensory gym periodically, the idea being that children who crave vestibular and proprioceptive movement become more regulated when given the opportunity to swing, have their bodies pressed in the squeeze machine, etc.  Only Emma never seems to get more regulated.

The principal at her school laughed and said, “I’ve never seen a kid who didn’t get tired… ever!”

And she doesn’t.  When we are in Aspen during the winter, Emma will ski for five hours, go to the Aspen Recreational Center where she’ll swim for another two to three hours, then climb on the climbing wall before going grocery shopping, where she’ll push the “customer in training” shopping carts, then stop up at the barn where she will do a weight lifting workout before coming home and demanding that we play a couple dozen games of hide and seek.  Even then she’ll get up bright and early the next morning at 6:00AM sharp if we’re lucky, 5:00AM, if we’re not.

Emma – age 5

For more on Emma’s journey through a childhood of autism and our exhausted attempts to keep up, go to:  www.EmmasHopeBook.com

Compulsions

I’ve been thinking a great deal about “stimming” which was the topic of yesterday’s post.  Stimming or self-stimulation is the word used for what many children and adults do who have been diagnosed with autism.  It is the repetitive behavior, often as varied as the personalities of the person engaged in it, used to self-regulate or calm oneself.  Many people with autism suffer from a wide range of sensory issues.  Emma may well experience light and sound differently than I do, for example.  I know she experiences physical pain differently.  A small, seemingly incidental scratch causes her to howl in pain, clutching the injured body part, scratching at it or rubbing it vigorously.  Yet a fall, that looks extremely painful, will be ignored.  Days later a large bruise might appear or swelling, which only makes one that much more aware of how it must have hurt and yet she didn’t seem to notice.

Sometimes Emma will plug her ears with her fingers when someone is speaking, often it is when one of us join her in singing a song.  I’ve noticed she does this when her air conditioner is on as well.  The low hum it makes is something she is unable to tolerate.  All of these examples are specific to Emma.  And it makes me wonder whether there are many other things I cannot know about;  does she see certain colors in a way that is painful?  Are some colors brighter to her, even garish and therefore hurt her eyes to look at?  I know certain sounds hurt her ears, sounds like that hum of her air conditioner, does it merely bother her or is it actually painful?  I can’t know.  What I do know is that if  one was bombarded with images, noise, sensations that I could not verbalize, would I not seek refuge in something I could control?  I don’t know, but I think I would.  Is Emma, when she twirls the plastic backing to the velcro strip around and around, soothing herself from an overload of external senses?  It seems likely.

Yet how is this so different from addictive behavior?  Is it not somewhat similar or in the same general ball park?  If someone engages in hours of video game playing or round after round of Solitaire on their computer or Spider (my particular favorite), how is this not also a kind of stimming?  At the very least it is certainly perseverative behavior.   If the game was just played once or for a few minutes that would be one thing, but what of the person(s) who plays endless games, one after the other?  A friend of mine said to me a few months ago, “Sometimes I ask myself – how many times do I have to win before I’ll stop and say that’s enough?  Because when I win there’s no real satisfaction or feeling that – okay now I’m won, it’s time to stop.  I mean how many hours have I wasted playing a really stupid game on the computer over and over again?”  I’m guessing many people can relate to this.  Even if they aren’t into computer generated games, there are other things many of us engage in, mindless “games” or habits we do that we wish we didn’t.  Consider all the games, video games, obsessive exercising, compulsive eating, compulsive dieting, any and all obsessions, compulsions or habits that get in the way of our lives or health, all the things we do while knowing they aren’t good for us and yet we can’t help ourselves from doing them anyway?

When I watch Emma twirling her strip of plastic, while jumping up and down and singing I am reminded of my own perseverative behaviors, the hours I’ve spent doing mindless activities, all to what end?  Am I too, calming myself?  Is this my own brand of self soothing?  I have harsher judgements about my activities, particularly computer games, than I do of Emma’s activities.  I have even, periodically deleted all games from my computer or mechanical device, only to reinstall at a later date.  Certainly there is a compulsiveness to my behavior and I would even go so far as to say an obsessiveness.  I do not mean to suggest my OCD tendencies are remotely the same as what Emma must go through on a daily basis, that would be insensitive and dismissive of her very serious sensory and neurological issues, but I throw this out as something I’ve noticed and can relate to in a very superficial way.  Of course I could be completely wrong about all of this and anyway I have to hurry so that I can finish today’s crossword before starting my day.

For more on Emma’s journey through a childhood of autism and obsessive behavior go to:  www.Emmashopebook.com

The Velcro Strip

Emma’s balloon string has been officially replaced.  She now carries a long plastic strip, the kind you peel off a self adhesive velcro strip.  How such a bizarre and unlikely item came into her possession is anyone’s guess.

Emma with her plastic velcro strip this morning before going to school.

Over the past year or more Emma has become attached to an assortment of long, thin objects.  The first was a stick she picked up on a playground near the Bronx Zoo.  One can never know when an object will become a coveted one.  But I remember that stick because she wouldn’t let go of it, even when she swung on the monkey bars at the playground.  It was an odd thing to watch her movements so clearly hindered by her refusal to let go of that long stick.  When we made our way to the subway for the long ride home, we told her she could not bring the stick with her.  She didn’t put up a fight and I thought nothing more of it until I saw her, upon our return home, reach down to pick up another stick from the planter outside our building’s front door.

” No Em.  The stick stays outside,” I told her and she complied.

But it became a habit, each and every time we left the house she would find a stick and carry it with her.  A few months later she found a long plastic strip used to bind packages and began carrying, twirling and waving that around while inside our home.

Emma’s assortment of “strings”.

There are a few thoughts on this sort of behavior with autistic children.  Some believe the items should be removed.  The idea being the child should not be allowed to have them as they increase “stimming”.  Stimming – shorthand for self-stimulation is a word, which is much used when speaking of autism.  It is the repetitive behavior the child/person uses to soothe, calm or regulate themselves.  The objects are varied and can be anything from spoons to things like running water.  But some children do not engage an object at all.  These children do things like  hand flapping, twirling, spinning, rocking and even head banging, while others stare at their own fingers that they wave in front of their eyes, others tap their fingers rapidly, hum or grunt, bite or twirl their hair, lick surfaces or smell things.  What marks their behavior from so called neuro-typical behavior such as pacing, doodling and thumb twirling is the child who is autistic may engage in these behavior for hours at a time, often getting in the way of daily living and learning.

Others believe the child should be allowed to stim and feel it is better to allow the child to self regulate.  They believe it is, in fact, cruel to remove the source of comfort for these children/adults who are autistic.  Many people believe learning can take place despite the stimming.

I don’t fall squarely into either camp.  Richard and I have done our best to give her the freedom to have some objects – balloon strings, velcro strips etc. while telling her she cannot bring sharp, pointed or objects we think might accidentally hurt her into the house.  We do not allow her to have her “Coqui” aka scraps of blanket outside her bedroom because she can sit for hours at a time sucking her thumb, which is doing untold damage to her teeth.  When I am working with Emma she may not have anything in her hands as I need her hands free to type, write etc.  But when she has gotten dressed, brushed her teeth, straightened her room, she can race around the house on her scooter, carrying whatever long piece of string/plastic/packaging tape she likes.  It’s difficult to know whether we are doing the right thing, but for the moment this middle ground seems to work or, at the very least, not cause too much damage.

Earlier this morning when I was trying to take a picture of Emma with her velcro strip, she wouldn’t look at the camera.

“Hey Em.  Can you look at the camera?” I asked.

“Say cheeeeese!”  Emma said scrunching her face up into a hapless and obviously forced “smile”.

“No not like that.  Think of something happy.  What makes you happy?” I asked, pointing the camera at her.

“Mommy makes me happy,” she whispered.

And that makes me happier than she can ever know.

For more on Emma’s journey through a childhood of autism and arbitrary items that hold her interest go to:  www.EmmasHopeBook.com